Hi all. I'm sorry it has been so long, but things have been a bit up in the air for me lately. As you can see from the title, I am not at home, but I am Mayo Clinic in Minnesota. I was admitted to the hospital when I was still in Michigan nearly a month ago, but they were unable to do anything more to help me. We requested a transfer to University of Michigan, but they flat out refused to see me after seeing my records. So, the next request was to Mayo and thankfully they said yes. After a round of testing, they decided that surgery was going to be necessary. On Monday, I am scheduled to have surgery - a skin graft - to my abdomen, but they won't be repairing the fistula at this time. They say that I will have to come back in about a year to have that done. So, as long as they don't worry about the infection that I currently have, I will be having surgery on Monday around noon.
Sorry this is fairly short, but I am getting tired and should get back to my room. I'll try to update more later. If you really want info, just send me an email at SallyLovesSnow@sbcglobal.net and I will include you on the email list.
Sally
Saturday, August 25, 2007
Saturday, August 4, 2007
It's been a little while...
Hi there. Sorry I have been MIA for a bit. Things aren't going all that well around here for me and I have been reluctant to share because sometimes saying it outloud makes it seem more real than one wants to deal with.
As you know, I have been using the wound VAC on my abdominal wound for about 2 weeks now. Well, on Wednesday, we took off the VAC to find that I have developed a fistula in that area where the abdominal wall ruptured this winter. It isn't a large fistula, but it is a fistula, nonetheless. For those who are unfamiliar with fistulas, let me explain. I have an area of my abdominal wall in the wound bed that was thin due to a coughing spell when I was hospitalized for bronchitis this winter. We knew it was a thin area and the wound clinic has been trying to repair the area for several months with no success. The way the wound VAC works is that it is a sponge that is laid on top of the wound bed and then suction is applied to it to pull out drainage and promote healing of tissue. Because we knew the entire wound bed was thin, they placed a contact layer over the wound bed before applying the sponge so the suction would be less apt to create fistulas. Unfortunately, in this one small area the contact layer was not enough and a fistula has formed.
A enterocutaneous fistula is an opening between the intestine and the skin whereupon bowel contents leaks from the intestine out through this opening. So, when we removed the sponge on Wednesday, we were greeted by my bowel contents (i.e. crap) leaking out. As I said, this is a very small fistula which has not matured and really is not all that severe. The problem is that it is going to be difficult to get it to heal and not get any larger being that we have been trying to get this area to heal for months and that was without the additional complication of an actual fistula.
For right now, they are reinforcing the area with additional products and then have reapplied the VAC because the rest of the wound is looking really good. Like the nurse said, she would rather be dealing with a smaller hole, even if it is a more complicated hole. So, if we can get it to heal up a little more with the wound VAC and have a smaller surface area to treat, all the better.
What is frustrating to me is that I kind of feel like this is the beginning of a very long and trecherous road that I don't want to go down. I always feared that if I started developing fistulas that it was a sign that my body just couldn't keep up anymore. After having the problem with the fistula tracts a couple months ago that just came out of the middle of no where and then to have this happen, I don't know what to think. Is my body just wearing out?
The good news is that I feel like things are starting to come together in terms of having myself set in a financial sense. Now that I have been approved for disability, I have a little money coming in. My bankruptcy was filed last week and I anticipate that it will be discharged within the next couple weeks and then I will no longer be responsible for that debt. I ended up filing for $40,000 in medical debts. As much as I hate to think this way, if something were to happen to me, I am glad to say that my family would not be put in the horrible position of having to struggle to pay my debts or even having to deal with them. I have no debt beyond my student loans at this point and my life insurance would cover the cost of my last expenses. No matter how morbid it is, it is nice to know that you are set and your family will not have to carry the burden of your expense.
I am enjoying a quiet night at home tonight. I was going to go out to a movie this afternoon, but instead decided to get some chinese (I love subgum fried rice!!!) and rent a few movies. Right now, I am watching Capote. It's very interesting. I know very little about Capote and have never read "In Cold Blood" so I am intrigued by it. I am also working very diligently on my cross-stitch. I got the stuff back from Dimensions this week and they have sent me a new project to do for them. My problem right now is that they want me to fill out tax papers. I was under the impression that the money they sent you for doing the pre-production projects was a "gift" and so I have to find out how that is classified because I don't think I can earn any money without jeopardizing my SSDI. I only have 14 days to get the project done, so I am going to start on it tonight and if all else fails, I will just end up sending it back to them without completing it if they won't let me do it for free. I have to check with social security though because I just don't see how making approximately $100-150 a year from craft work should make a difference.
Anyway, I better get to it or I will be sitting here all night. I hope you all have a wonderful day!
Sally
As you know, I have been using the wound VAC on my abdominal wound for about 2 weeks now. Well, on Wednesday, we took off the VAC to find that I have developed a fistula in that area where the abdominal wall ruptured this winter. It isn't a large fistula, but it is a fistula, nonetheless. For those who are unfamiliar with fistulas, let me explain. I have an area of my abdominal wall in the wound bed that was thin due to a coughing spell when I was hospitalized for bronchitis this winter. We knew it was a thin area and the wound clinic has been trying to repair the area for several months with no success. The way the wound VAC works is that it is a sponge that is laid on top of the wound bed and then suction is applied to it to pull out drainage and promote healing of tissue. Because we knew the entire wound bed was thin, they placed a contact layer over the wound bed before applying the sponge so the suction would be less apt to create fistulas. Unfortunately, in this one small area the contact layer was not enough and a fistula has formed.
A enterocutaneous fistula is an opening between the intestine and the skin whereupon bowel contents leaks from the intestine out through this opening. So, when we removed the sponge on Wednesday, we were greeted by my bowel contents (i.e. crap) leaking out. As I said, this is a very small fistula which has not matured and really is not all that severe. The problem is that it is going to be difficult to get it to heal and not get any larger being that we have been trying to get this area to heal for months and that was without the additional complication of an actual fistula.
For right now, they are reinforcing the area with additional products and then have reapplied the VAC because the rest of the wound is looking really good. Like the nurse said, she would rather be dealing with a smaller hole, even if it is a more complicated hole. So, if we can get it to heal up a little more with the wound VAC and have a smaller surface area to treat, all the better.
What is frustrating to me is that I kind of feel like this is the beginning of a very long and trecherous road that I don't want to go down. I always feared that if I started developing fistulas that it was a sign that my body just couldn't keep up anymore. After having the problem with the fistula tracts a couple months ago that just came out of the middle of no where and then to have this happen, I don't know what to think. Is my body just wearing out?
The good news is that I feel like things are starting to come together in terms of having myself set in a financial sense. Now that I have been approved for disability, I have a little money coming in. My bankruptcy was filed last week and I anticipate that it will be discharged within the next couple weeks and then I will no longer be responsible for that debt. I ended up filing for $40,000 in medical debts. As much as I hate to think this way, if something were to happen to me, I am glad to say that my family would not be put in the horrible position of having to struggle to pay my debts or even having to deal with them. I have no debt beyond my student loans at this point and my life insurance would cover the cost of my last expenses. No matter how morbid it is, it is nice to know that you are set and your family will not have to carry the burden of your expense.
I am enjoying a quiet night at home tonight. I was going to go out to a movie this afternoon, but instead decided to get some chinese (I love subgum fried rice!!!) and rent a few movies. Right now, I am watching Capote. It's very interesting. I know very little about Capote and have never read "In Cold Blood" so I am intrigued by it. I am also working very diligently on my cross-stitch. I got the stuff back from Dimensions this week and they have sent me a new project to do for them. My problem right now is that they want me to fill out tax papers. I was under the impression that the money they sent you for doing the pre-production projects was a "gift" and so I have to find out how that is classified because I don't think I can earn any money without jeopardizing my SSDI. I only have 14 days to get the project done, so I am going to start on it tonight and if all else fails, I will just end up sending it back to them without completing it if they won't let me do it for free. I have to check with social security though because I just don't see how making approximately $100-150 a year from craft work should make a difference.
Anyway, I better get to it or I will be sitting here all night. I hope you all have a wonderful day!
Sally
Sunday, July 22, 2007
AMAZING week!
Hi there! This has been an amazing week. It started on Sunday when we left to go camping. We went to Gun Lake (only about 30 minutes from home). This was a good choice so if something happened we weren't too far from home. Being that I woke up on Friday morning to go to see my PCP and found that I had cellulitis again, close to home was a good choice for vacation. The good news was that I was seeing my PCP anyway, so we started ointment and antibiotics and it cleared up quickly with no complications.
Anyway, we went camping Sunday through Tuesday. It was Andrew's first camping experience. He had a wonderful time and can't wait to go again. When he got home, he informed Becky that he had to go to sleep so that he could get up and have breakfast at the campsite! I had a great time too. I got to read until my heart was content. I enjoyed just sitting in the great outdoors and experiencing nature while I was reading. We had great food and an amazing time with each other. Each night, we sat around the campfire mezmorized by the glow of the fire.
When we came back, I got a delightful call from a gentleman at Social Security. For the first 5 months of disability, you are not eligible for any money, which meant that I didn't start getting money until July. I had learned this information last week when I got the notification that I had been approved. Well, this gentleman was calling to tell me that I qualified for Social Security Income for those first 5 months and I would be getting a check for those 5 months! YEAH! MONEY!!!
Friday, I went to the Wound Clinic and we decided to try the Wound VAC. I had contemplated not doing it because the idea of complications such as fistulas in the bowel due to the suction scare the crap out of me, but Mary Beth was very convincing that she was taking every precaution to keep that from happening. It is a very quiet machine. It is basically silent, but it does occasionally make a sound like it is burping. It is a little heavy and does throw my back off when I am walking, which is making me a bit uncomfortable. It is also a little awkward to have the drainage tubing hanging out all the time where people can see the drainage. I didn't think that it would have much, but it is draining more than I had anticipated. Mary Beth said that we would know within the first few dressing changes if this was going to work or not. She is really just looking for some granulation tissue so that the Applegraf has something to attach to. We will see what happens, especially with the news listed below. It will complicate things a bit.
Yesterday, I checked my bank account and the social security income money was there and I was able to write mom a check to start my repayment of all the money she has loaned me and I was also able to invite her out for a nice dinner which I paid for. So, we went to Red Lobster and had shrimp and crab legs. It was very tasty and it was even more tasty knowing that I was not having to ask for money to pay for it.
Then when we got home, I went out and got the mail. I was nervous to find 2 envelopes from the state in the mail. The first envelope revealed that my food stamp money had been reduced from $155 to $113 a month. I thought, oh no, how am I supposed to do this??? Well, I opened the next envelope to find that the reason my food stamps had been reduced was because I had been approved for state disability assistance and am now receiving a cash benefit which was more than they reduced my food stamps. In addition to the cash benefit, I have also been approved for medicaid as of January 1, 2007. So, I will now be able to have all these places bill medicaid and I can also stop paying COBRA benefits as well. It looks like I am going to have to pay the COBRA bill for July because I haven't been able to get anything pre-approved by medicaid and I don't want to end up with a bunch of bills that I have to sit on for a year, but I will get everyone working on pre-approval for August so I can get rid of that bill.
So, this has been a great week. We had such a good time camping and then to end the week with the high note of getting all my disability approved and the medicaid situation finally approved. It is such a relief to know that I have insurance and that everything is approved. I am still in awe that I got my social security disabiltiy approved on the first try. It is a little disconcerting to know that my situation is so dire that they approved it so quickly, but I am trying not to focus on that. I am just looking at the positive side of this situation.
So, I am off to WalMart to get a couple things, including the new Harry Potter book. I am looking forward to getting that read and learning how Harry's life continues on. I am hoping to go see the movie some time this week, but it is a very busy week for me. I have to go to the Wound Clinic on Monday, Wednesday and Friday for dressing changes and then I also have an appointment on Thursday to see Dr. Borozan and then on Friday I have my IVIG infusion. Like I said, a very busy week. On Tuesday, I am hoping to catch up with my Aunt Sue and have breakfast with my sister as well as dinner with "the girls" on Monday evening. YIKES! I am tired already!
Anyway, hope you all have a great day! I think that I shall go take my movie back, go to WalMart and then maybe take myself out to dinner! Such fun!
Sally
Anyway, we went camping Sunday through Tuesday. It was Andrew's first camping experience. He had a wonderful time and can't wait to go again. When he got home, he informed Becky that he had to go to sleep so that he could get up and have breakfast at the campsite! I had a great time too. I got to read until my heart was content. I enjoyed just sitting in the great outdoors and experiencing nature while I was reading. We had great food and an amazing time with each other. Each night, we sat around the campfire mezmorized by the glow of the fire.
When we came back, I got a delightful call from a gentleman at Social Security. For the first 5 months of disability, you are not eligible for any money, which meant that I didn't start getting money until July. I had learned this information last week when I got the notification that I had been approved. Well, this gentleman was calling to tell me that I qualified for Social Security Income for those first 5 months and I would be getting a check for those 5 months! YEAH! MONEY!!!
Friday, I went to the Wound Clinic and we decided to try the Wound VAC. I had contemplated not doing it because the idea of complications such as fistulas in the bowel due to the suction scare the crap out of me, but Mary Beth was very convincing that she was taking every precaution to keep that from happening. It is a very quiet machine. It is basically silent, but it does occasionally make a sound like it is burping. It is a little heavy and does throw my back off when I am walking, which is making me a bit uncomfortable. It is also a little awkward to have the drainage tubing hanging out all the time where people can see the drainage. I didn't think that it would have much, but it is draining more than I had anticipated. Mary Beth said that we would know within the first few dressing changes if this was going to work or not. She is really just looking for some granulation tissue so that the Applegraf has something to attach to. We will see what happens, especially with the news listed below. It will complicate things a bit.
Yesterday, I checked my bank account and the social security income money was there and I was able to write mom a check to start my repayment of all the money she has loaned me and I was also able to invite her out for a nice dinner which I paid for. So, we went to Red Lobster and had shrimp and crab legs. It was very tasty and it was even more tasty knowing that I was not having to ask for money to pay for it.
Then when we got home, I went out and got the mail. I was nervous to find 2 envelopes from the state in the mail. The first envelope revealed that my food stamp money had been reduced from $155 to $113 a month. I thought, oh no, how am I supposed to do this??? Well, I opened the next envelope to find that the reason my food stamps had been reduced was because I had been approved for state disability assistance and am now receiving a cash benefit which was more than they reduced my food stamps. In addition to the cash benefit, I have also been approved for medicaid as of January 1, 2007. So, I will now be able to have all these places bill medicaid and I can also stop paying COBRA benefits as well. It looks like I am going to have to pay the COBRA bill for July because I haven't been able to get anything pre-approved by medicaid and I don't want to end up with a bunch of bills that I have to sit on for a year, but I will get everyone working on pre-approval for August so I can get rid of that bill.
So, this has been a great week. We had such a good time camping and then to end the week with the high note of getting all my disability approved and the medicaid situation finally approved. It is such a relief to know that I have insurance and that everything is approved. I am still in awe that I got my social security disabiltiy approved on the first try. It is a little disconcerting to know that my situation is so dire that they approved it so quickly, but I am trying not to focus on that. I am just looking at the positive side of this situation.
So, I am off to WalMart to get a couple things, including the new Harry Potter book. I am looking forward to getting that read and learning how Harry's life continues on. I am hoping to go see the movie some time this week, but it is a very busy week for me. I have to go to the Wound Clinic on Monday, Wednesday and Friday for dressing changes and then I also have an appointment on Thursday to see Dr. Borozan and then on Friday I have my IVIG infusion. Like I said, a very busy week. On Tuesday, I am hoping to catch up with my Aunt Sue and have breakfast with my sister as well as dinner with "the girls" on Monday evening. YIKES! I am tired already!
Anyway, hope you all have a great day! I think that I shall go take my movie back, go to WalMart and then maybe take myself out to dinner! Such fun!
Sally
Thursday, July 12, 2007
APPROVED!!!
Hi there! Amazing news! I just got my approval from Social Security Disability! I actually got approved on the first try and in only 5 months! This is unheard of to be approved on the first try. Everyone had warned me that I would be declined and have to appeal and had said that I should get a lawyer for the appeal because it is easier to get approved that way. I was concerned because I didn't know how I would pay for a lawyer. Well, now I don't have to even worry about it!
So, as of the second week of August, I will start getting money!!! It will be so nice to get a monthly income. I really appreciate mom loaning me money for all these months, but I am soooo thankful that I won't have to be asking for money anymore. It is so very degrading to have to ask for money when you are a grown woman. This will do amazing things for my self-esteem.
Hard as it is to believe, I have been approved for SSDI before I got approved for Medicaid! Hopefully I will get good news from the state soon and get my medicaid. I will also have to file my bankruptcy in the next couple weeks too because I don't want to take a chance on anyone garnishing my precious SSDI checks!
Hope you have a great day! Goodness knows that I am!
Sally
So, as of the second week of August, I will start getting money!!! It will be so nice to get a monthly income. I really appreciate mom loaning me money for all these months, but I am soooo thankful that I won't have to be asking for money anymore. It is so very degrading to have to ask for money when you are a grown woman. This will do amazing things for my self-esteem.
Hard as it is to believe, I have been approved for SSDI before I got approved for Medicaid! Hopefully I will get good news from the state soon and get my medicaid. I will also have to file my bankruptcy in the next couple weeks too because I don't want to take a chance on anyone garnishing my precious SSDI checks!
Hope you have a great day! Goodness knows that I am!
Sally
Quiet Thursday afternoon
Hello all. I am just having a quiet Thursday afternoon. I had planned to go see Harry Potter today, but changed my mind. My neck/shoulder is considerably more sore than I anticipated and so I decided that I would just stay home and relax today. I will go see the movie next week instead. Fortunately, this is one of those movies that I don't feel like I need to rush right out to see because I know how the story goes...no matter how many previews and interviews I see on TV about the movie, they can't spoil it because I have read the book and know the story. So, waiting until next week is no big deal. Besides, I would rather relax today so that I have the energy and strength for tomorrow.
I am very excited about tomorrow. I am picking Andrew up from school and we are going to see Ratatoille. I am so looking forward to taking him to the theater and seeing the movie and so is he. We had such a good day yesterday. There are many times that he really doesn't want much to do with me when we are together, especially if grandma is there. He generally will curl up with her over me and, I admit, sometimes it hurts my feelings a bit (I am human, you know) even though I know that he doesn't mean to do that. Yesterday though, he wanted me...he wanted to sit next to me at dinner and he wanted to sit with me when we got home, curled up in my lap and we read a few books together. He had a ton of energy last night though and was running around the living room in circles, did summersaults, was showing me his stunt falls, etc. He was so funny. I was so tired after the procedure and he was just running like his tail was on fire!
So, my plans for today are pretty minimal. I am going to tidy up the kitchen here in a minute and then I am going to go and cross-stitch for a bit. I'll likely take a nap too, just because I can!
Oh, Social Security called yesterday while I was gone and wanted to know when he could call me on Friday. So, I left him a message today that he could call me in the morning. It will be interesting to see what he has to offer. I am hoping that he is calling to tell me that they have sent my file in and we are just waiting for a response. I am hoping that he might even be calling to give me some good news!!! Wouldn't it be nice to hear some positive news? Wouldn't it be nice to hear that someone is going to give me some money finally??? I'll let you know what they have to offer after I find out.
Anyway, hope you all have a great day. I'm off to the kitchen!
Sally
I am very excited about tomorrow. I am picking Andrew up from school and we are going to see Ratatoille. I am so looking forward to taking him to the theater and seeing the movie and so is he. We had such a good day yesterday. There are many times that he really doesn't want much to do with me when we are together, especially if grandma is there. He generally will curl up with her over me and, I admit, sometimes it hurts my feelings a bit (I am human, you know) even though I know that he doesn't mean to do that. Yesterday though, he wanted me...he wanted to sit next to me at dinner and he wanted to sit with me when we got home, curled up in my lap and we read a few books together. He had a ton of energy last night though and was running around the living room in circles, did summersaults, was showing me his stunt falls, etc. He was so funny. I was so tired after the procedure and he was just running like his tail was on fire!
So, my plans for today are pretty minimal. I am going to tidy up the kitchen here in a minute and then I am going to go and cross-stitch for a bit. I'll likely take a nap too, just because I can!
Oh, Social Security called yesterday while I was gone and wanted to know when he could call me on Friday. So, I left him a message today that he could call me in the morning. It will be interesting to see what he has to offer. I am hoping that he is calling to tell me that they have sent my file in and we are just waiting for a response. I am hoping that he might even be calling to give me some good news!!! Wouldn't it be nice to hear some positive news? Wouldn't it be nice to hear that someone is going to give me some money finally??? I'll let you know what they have to offer after I find out.
Anyway, hope you all have a great day. I'm off to the kitchen!
Sally
Wednesday, July 11, 2007
I am the proud owner of a port-a-cath!
YAY! I had my port-a-cath placed today. For those that don't understand the concept of a port-a-cath, I will try to explain. It is a small port that is placed just under the skin in my upper chest just below my right collarbone. This is covered by skin and can be accessed by a needle. You can imagine that it is like when they access a regular IV site into that little rubber piece that dangles at the end of the IV line. They go through the skin and can draw blood, give medication, etc. without having to search around for a vein now because this port is connected directly to a vein at all times. This means that I will no longer have to have regular IV lines and they won't have to go searching for a vein each time I go in for my IVIG infusions or into the hospital for an admission! This should save me lots of poking, bruises and discomfort. Now you can likely understand why I have been looking forward to this for so long.
The procedure went well today with no complications. My arm/shoulder really hurts tonight. It feels like someone has been yanking on my arm and trying to shove their foot through my shoulder. I assume that I will be in less pain tomorrow and that by the weekend all should be fine.
Yesterday, I had the unpleasant experience of having my first acute pancreatitis attack. I was in so much pain it was unbelievable. It started around 4:30am and by 7am, I had all I could take and went upstairs in hopes of getting comfortable in a recliner. Mom saw me before she left and I burst into tears because I was in so much pain. I assured her that I would be fine and that if I wasn't, I would call Becky because she was off. So, mom went off to work with the promise from me that I would call if it got worse. I probably should have gone to the ER because my home pain meds weren't working in the slightest. I refrained from eating and did very little drinking all day and by the end of the night, it was a little better. I did have a little bowl of soup since I knew I wouldn't be able to eat today because of the procedure and that didn't seem to make things too much worse. It was a very uncomfortable night in bed, but I managed to get a little sleep and was feeling better this morning. I talked to my surgeon about it today and he said I was right in not eating and giving my pancreas a rest. He also agreed I probably should have gone in, but understood why I didn't. I was afraid that if I did, they would admit me and cancel my procedure for today and also that it would ruin our camping trip for the weekend. I will definitely admit that it scared the crap out of me. I was also hesitant to go in because I didn't want to hear that it was all back again. Nothing scares me more than the idea that my pancreas will try to eat me alive again. The GI doctor told me that it was inevitable that it will and now I live in fear that he is right. I know that I could not go through all that again - neither physically nor mentally/emotionally. I have already made the decision that if it happens again, they are to just let me go. I can't do it. It is too much for both me and my family to go through again. I literally live in fear of when it will happen. It is what wakes me in a cold sweat in the middle of the night. It is what pushes me to make the most of the time that I have with my family now - especially with Andrew - because I am so afraid that there will come a time in the not so distant future that I won't be around. I cherish the time I have with everyone now. It has made me appreciate my family so much more and all they do for me. I hate thinking that I won't be there for my sister when she needs me and that I may miss out on the important moments of Andrew's life as he gets older. It isn't fair that I should even have to think about those things.
Anyway, on a more cheerful note...I am planning to scrounge together $3 so I can go see the Harry Potter movie tomorrow. Then, Andrew and I are going to see Ratatoille on Friday. They needed me to pick him up from school on Friday, so I said I would pick him up after my doctor's appointment and we would go see the movie. He told me tonight that he didn't want to go, but then I told him that I really want to see it, but don't want to go alone...I need a date. So, he decided that he would take me to see it. How cute is that? After the movie, we will go back to his house to play until his parents come home.
Well, I am sore and tired, so I am off to bed. Hope you all have a great day!
Sally
The procedure went well today with no complications. My arm/shoulder really hurts tonight. It feels like someone has been yanking on my arm and trying to shove their foot through my shoulder. I assume that I will be in less pain tomorrow and that by the weekend all should be fine.
Yesterday, I had the unpleasant experience of having my first acute pancreatitis attack. I was in so much pain it was unbelievable. It started around 4:30am and by 7am, I had all I could take and went upstairs in hopes of getting comfortable in a recliner. Mom saw me before she left and I burst into tears because I was in so much pain. I assured her that I would be fine and that if I wasn't, I would call Becky because she was off. So, mom went off to work with the promise from me that I would call if it got worse. I probably should have gone to the ER because my home pain meds weren't working in the slightest. I refrained from eating and did very little drinking all day and by the end of the night, it was a little better. I did have a little bowl of soup since I knew I wouldn't be able to eat today because of the procedure and that didn't seem to make things too much worse. It was a very uncomfortable night in bed, but I managed to get a little sleep and was feeling better this morning. I talked to my surgeon about it today and he said I was right in not eating and giving my pancreas a rest. He also agreed I probably should have gone in, but understood why I didn't. I was afraid that if I did, they would admit me and cancel my procedure for today and also that it would ruin our camping trip for the weekend. I will definitely admit that it scared the crap out of me. I was also hesitant to go in because I didn't want to hear that it was all back again. Nothing scares me more than the idea that my pancreas will try to eat me alive again. The GI doctor told me that it was inevitable that it will and now I live in fear that he is right. I know that I could not go through all that again - neither physically nor mentally/emotionally. I have already made the decision that if it happens again, they are to just let me go. I can't do it. It is too much for both me and my family to go through again. I literally live in fear of when it will happen. It is what wakes me in a cold sweat in the middle of the night. It is what pushes me to make the most of the time that I have with my family now - especially with Andrew - because I am so afraid that there will come a time in the not so distant future that I won't be around. I cherish the time I have with everyone now. It has made me appreciate my family so much more and all they do for me. I hate thinking that I won't be there for my sister when she needs me and that I may miss out on the important moments of Andrew's life as he gets older. It isn't fair that I should even have to think about those things.
Anyway, on a more cheerful note...I am planning to scrounge together $3 so I can go see the Harry Potter movie tomorrow. Then, Andrew and I are going to see Ratatoille on Friday. They needed me to pick him up from school on Friday, so I said I would pick him up after my doctor's appointment and we would go see the movie. He told me tonight that he didn't want to go, but then I told him that I really want to see it, but don't want to go alone...I need a date. So, he decided that he would take me to see it. How cute is that? After the movie, we will go back to his house to play until his parents come home.
Well, I am sore and tired, so I am off to bed. Hope you all have a great day!
Sally
Friday, July 6, 2007
No more random poking!
YAY! I got a phone call this morning with the date of my port-a-cath insertion. It is going to be done on Wednesday, July 11 at 2:45pm. I am very excited because this will mean that there will not be any random poking at the end of the month when I go in for my infusion! I saw Dr. Borozan on Tuesday and he said that he had no problem doing the surgery and that my subclavian on the right is open and appears to be ready for the port.
In other news, we went to the fireworks on Wednesday night. This was Andrew's first fireworks exposure and he enjoyed it to begin with, but then decided he was scared. He didn't like the noise, but he sat very quietly on grandma's lap and waited until it was over. Before the fireworks, he was running around playing duck, duck, goose with us and just running around in circles for the sake of running! He is just so adorable!
In other news, we went to the fireworks on Wednesday night. This was Andrew's first fireworks exposure and he enjoyed it to begin with, but then decided he was scared. He didn't like the noise, but he sat very quietly on grandma's lap and waited until it was over. Before the fireworks, he was running around playing duck, duck, goose with us and just running around in circles for the sake of running! He is just so adorable!
Otherwise, things are about the same as usual. I will be babysitting tomorrow for the adorable little Andrew. I had planned to take him to see Ratatoille this week, but he went last week with his school friends. It was his first movie. I can just about see the 20 or so of them walking down the sidewalk to the theater and then all sitting in a row. So cute! It's just as well that he went then though because I won't be able to take him this week like I had planned because of the port insertion. So, I think that we will still go together, but it will be a couple weeks...unless we go tomorrow on a whim! He can't actually tell me what the movie was about, but he did say that part of it scared him. I don't think he was so much scared by the movie as by being in the dark without an adult to cuddle up with. So, hopefully he will enjoy it even more the second time around.
Healthwise, I am still struggling with abdominal pain since that weird event last week. I don't know what is going on, but it could stop any time now! Lungs are doing okay, a little better than last week, but still not great. The major changes in weather and all the heat with humidity doesn't help any! The skin tears are healing and I don't seem to be getting as many of them these days. I am hoping that is getting better and will not cause problems.
Well, I had better find some lunch. I have chicken defrosted and marinating for dinner, but lunch is still up in the air...perhaps a sandwich and chips again...
Sally
Saturday, June 30, 2007
Me and my iPod
Hello. I am just sitting here loading songs onto my iPod. I have finally straightened it all out and seem to have all the songs that we have purchased and am currently loading all my CD music onto the library. It will be nice to have a full iPod finally. My plan is to take it with us when we go camping and so I wanted it to be fully loaded and ready to go. I now have something like 25 hours of music ready to sync to it.
Otherwise, it has been a busy week. I had my IVIG infusion on Tuesday. The nurse lacked math skills and ran it way too fast. As a result, I have just felt pretty lousy all week. We actually had to stop the infusion for a while because I had a pounding headache like none other and was getting really cold and feeling funky. I saw Dr. Batts on Thursday and he told me to make sure that they don't run it so fast again. It should be run at half speed - no faster. He said that everyone who has it run too fast ends up with that horrible headache and feels bad. There is no need to go so fast. The appointment with Dr. Batts went really well. He said that we can go ahead with both the port and the Aplegraf (skin graft) as my infection rate is definitely better than it was. My IgG was 569, which all he is looking for is over 500, so we are doing well there. He did say that we will have to continue with pre- and post-levels because I am a little too close to 500 to just go willy nilly... I can see that and appreciate that he keeps such close track. I don't have to go back to see him for another 6 months, but as he put it "you know where I live if you need me!"
I called Dr. Borozan after I left Dr. Batts' office so that we could get the port going. They said they needed a fax from Dr. Batts and so I called them back and she said that she would send the office note over when it was done. I figured I would have to call people again next week to see where we were at, but low and behold, Dr. Borozan's office called me yesterday and told me that he would like to see me on Tuesday morning. So, hopefully we can get that set up fairly quickly and I won't have to be poked at next month for the infusion. We are running out of good veins - the one we used last week was small and burned throughout the infusion.
I babysat for Andrew today. We had a really good day together. He had no accidents and was just as cheerful as can be. He ate like a little piggly-wiggly! It was so cute - he just kept asking for more pizza and then he even ate a couple cookies, which I never see him do! He was also very cuddly today...who doesn't want to cuddle with such an adorable little guy?
Well, the iPod is done with its sync and I need to go sit down for a few minutes before we go away. I am kind of struggling with my abdominal pain. I woke up the other night with a very sharp pain and I was sure that it was all starting over again. Since then, I have been having a hard time eating and my abdomen just hurts all the time in a way unlike the normal pain. I am hoping that it will just go away, but I fear that it won't and that this is the start of something that I don't really want to deal with again.
Anyway, hope you have a great day.
Sally
Otherwise, it has been a busy week. I had my IVIG infusion on Tuesday. The nurse lacked math skills and ran it way too fast. As a result, I have just felt pretty lousy all week. We actually had to stop the infusion for a while because I had a pounding headache like none other and was getting really cold and feeling funky. I saw Dr. Batts on Thursday and he told me to make sure that they don't run it so fast again. It should be run at half speed - no faster. He said that everyone who has it run too fast ends up with that horrible headache and feels bad. There is no need to go so fast. The appointment with Dr. Batts went really well. He said that we can go ahead with both the port and the Aplegraf (skin graft) as my infection rate is definitely better than it was. My IgG was 569, which all he is looking for is over 500, so we are doing well there. He did say that we will have to continue with pre- and post-levels because I am a little too close to 500 to just go willy nilly... I can see that and appreciate that he keeps such close track. I don't have to go back to see him for another 6 months, but as he put it "you know where I live if you need me!"
I called Dr. Borozan after I left Dr. Batts' office so that we could get the port going. They said they needed a fax from Dr. Batts and so I called them back and she said that she would send the office note over when it was done. I figured I would have to call people again next week to see where we were at, but low and behold, Dr. Borozan's office called me yesterday and told me that he would like to see me on Tuesday morning. So, hopefully we can get that set up fairly quickly and I won't have to be poked at next month for the infusion. We are running out of good veins - the one we used last week was small and burned throughout the infusion.
I babysat for Andrew today. We had a really good day together. He had no accidents and was just as cheerful as can be. He ate like a little piggly-wiggly! It was so cute - he just kept asking for more pizza and then he even ate a couple cookies, which I never see him do! He was also very cuddly today...who doesn't want to cuddle with such an adorable little guy?
Well, the iPod is done with its sync and I need to go sit down for a few minutes before we go away. I am kind of struggling with my abdominal pain. I woke up the other night with a very sharp pain and I was sure that it was all starting over again. Since then, I have been having a hard time eating and my abdomen just hurts all the time in a way unlike the normal pain. I am hoping that it will just go away, but I fear that it won't and that this is the start of something that I don't really want to deal with again.
Anyway, hope you have a great day.
Sally
Thursday, June 21, 2007
Just a normal day...
Hello. I'm just having a lazy day with nothing in particular planned. I would like to run to the store, but that will wait until tomorrow. I want to make a quiche or a fritata, but I don't have a good recipe yet. I would also like to make some shepherd's pie, but again, no recipe. As for the quiche, I want to make a chicken and broccoli quiche. I did find a recipe yesterday on Food Network, but I need to keep looking because that had a weird crust that included things like rice and I just want to make one with a store bought crust. I am not looking to make this complicated - just something different from the usual.
Becky and I went to a movie last night when she got out of work. We saw Knocked Up. It was good. I really liked it. The language is a bit rough, but it wasn't anything that I found to be all that bad - I guess it seemed more in context. As I recall, this film is made by the same people that did 40-year-old Virgin. I found the language in that one to be really rough, but the context just wasn't there, in my opinion. Maybe I just didn't care for the subject of the latter film though. I don't see why it is such a big deal if someone doesn't run around having sex with anything that moves. Personally, I think sex is something to have with someone you love, not something you do just to say you did it. Okay, off my soapbox...
I really didn't feel well yesterday. There is a possibility that I forgot to take my meds though. I know that sounds strange to say that there is a possibility, but I really can't remember. When I was at the wound clinic, I suddenly realized that I couldn't remember. The problem is that I don't have a method that I can confirm or deny if I did, so I just assumed that I did because I always do. So, either I was just having a bad day in terms of how I felt or I forgot my meds...Under any circumstances, I feel a little better today. I'm just feeling slow and sore.
Part of my problem is that I did a typical Sally on Monday evening. I took a shower in the evening because I was warm and sticky. Well, I thought that I had the shower on cooler water, but when I got in, I quickly realized that I had it on entirely hot. So, I flew out of the shower as the water scalded my body and unfortunately only 1 foot made it out of the tub and slid across the floor allowing me to do a lovely split. In case you wondered, my body is not designed to go in that direction. So, I have been a bit sore this week from that little escapade.
Well, my pizza is done and I shall go have some lunch! Hope you all have a great day!
Sally
Becky and I went to a movie last night when she got out of work. We saw Knocked Up. It was good. I really liked it. The language is a bit rough, but it wasn't anything that I found to be all that bad - I guess it seemed more in context. As I recall, this film is made by the same people that did 40-year-old Virgin. I found the language in that one to be really rough, but the context just wasn't there, in my opinion. Maybe I just didn't care for the subject of the latter film though. I don't see why it is such a big deal if someone doesn't run around having sex with anything that moves. Personally, I think sex is something to have with someone you love, not something you do just to say you did it. Okay, off my soapbox...
I really didn't feel well yesterday. There is a possibility that I forgot to take my meds though. I know that sounds strange to say that there is a possibility, but I really can't remember. When I was at the wound clinic, I suddenly realized that I couldn't remember. The problem is that I don't have a method that I can confirm or deny if I did, so I just assumed that I did because I always do. So, either I was just having a bad day in terms of how I felt or I forgot my meds...Under any circumstances, I feel a little better today. I'm just feeling slow and sore.
Part of my problem is that I did a typical Sally on Monday evening. I took a shower in the evening because I was warm and sticky. Well, I thought that I had the shower on cooler water, but when I got in, I quickly realized that I had it on entirely hot. So, I flew out of the shower as the water scalded my body and unfortunately only 1 foot made it out of the tub and slid across the floor allowing me to do a lovely split. In case you wondered, my body is not designed to go in that direction. So, I have been a bit sore this week from that little escapade.
Well, my pizza is done and I shall go have some lunch! Hope you all have a great day!
Sally
Monday, June 18, 2007
Technology for dummies?
Okay, that's it...I give up - the IPod is beyond me. I finally figured out how to download some purchased songs, but the only problem is that they are only the ones that Becky purchased. I can't even FIND the songs that I purchased over the course of the last 2 years! I am hoping that Becky has them on CD and I can just copy them because I can't find them...
Anyway, today is very warm. It is supposed to be the hottest day of the year so far...94 degrees. I am staying inside...my lungs HATE the weather. My lungs aren't even happy being inside today! Dr. Duranceau added Singulair to my regimen with the hopes that it would help and I could avoid having to increase my Medrol, but I don't know if it is going to work or not. I am trying really hard to hold out because if I increase the Medrol, then my sugars will increase and goodness knows I cannot take that. My sugars have been way too high as it is lately.
Mom and I went out last night to get my prescriptions for the week and then we went to get a little dinner. I had a nice chicken wrap, but at the end of the meal, I was blessed with that "OMG, I'm going to puke" feeling. I love that feeling. As I am getting up to run from the table, mom asked if I was okay and I said "I hope so." I don't know exactly what causes that to happen, but I wish I could figure it out and stop it!
Today has been a bit of a lazy day. I have done some laundry, but that's about it.
Oh, Thursday was lovely at the beach. The rest of them went down to the beach for about 2 hours and I sat up at the trailer just reading and taking a nap. I got a bit of sun on one side of me because I fell asleep and the shade moved. Oops. Then, we bbq'd dinner and headed for home. It was a really nice day though and very nice to be with Sue and Jim.
Saturday, Andrew and I spent the day together. I stopped and got some movies for us to watch and he was all excited to get here because he had heard that I got a Wiggles video. He sure does love the Wiggles. It was basically a video of one of their live shows, so lots of music and dancing. We also saw The Berenstein Bears go to the Dentist, which was very helpful because he is going to the dentist soon. After the video, he said - see! the dentist don't hurt! I want balloon! (the bears get a balloon at the end of their visit). I told him that maybe he would get a sticker after his visit.
Well, that pretty much sums up the last few days. I have a fairly slow week planned, which is a good thing because I think that if I push it, my lungs will revolt for the week. I only have wound care on Wednesday. Next week will be busier...wound care, Dr. Batts, IVIG, lunch with the girls...busy week!
Have a great day!
Sally
Anyway, today is very warm. It is supposed to be the hottest day of the year so far...94 degrees. I am staying inside...my lungs HATE the weather. My lungs aren't even happy being inside today! Dr. Duranceau added Singulair to my regimen with the hopes that it would help and I could avoid having to increase my Medrol, but I don't know if it is going to work or not. I am trying really hard to hold out because if I increase the Medrol, then my sugars will increase and goodness knows I cannot take that. My sugars have been way too high as it is lately.
Mom and I went out last night to get my prescriptions for the week and then we went to get a little dinner. I had a nice chicken wrap, but at the end of the meal, I was blessed with that "OMG, I'm going to puke" feeling. I love that feeling. As I am getting up to run from the table, mom asked if I was okay and I said "I hope so." I don't know exactly what causes that to happen, but I wish I could figure it out and stop it!
Today has been a bit of a lazy day. I have done some laundry, but that's about it.
Oh, Thursday was lovely at the beach. The rest of them went down to the beach for about 2 hours and I sat up at the trailer just reading and taking a nap. I got a bit of sun on one side of me because I fell asleep and the shade moved. Oops. Then, we bbq'd dinner and headed for home. It was a really nice day though and very nice to be with Sue and Jim.
Saturday, Andrew and I spent the day together. I stopped and got some movies for us to watch and he was all excited to get here because he had heard that I got a Wiggles video. He sure does love the Wiggles. It was basically a video of one of their live shows, so lots of music and dancing. We also saw The Berenstein Bears go to the Dentist, which was very helpful because he is going to the dentist soon. After the video, he said - see! the dentist don't hurt! I want balloon! (the bears get a balloon at the end of their visit). I told him that maybe he would get a sticker after his visit.
Well, that pretty much sums up the last few days. I have a fairly slow week planned, which is a good thing because I think that if I push it, my lungs will revolt for the week. I only have wound care on Wednesday. Next week will be busier...wound care, Dr. Batts, IVIG, lunch with the girls...busy week!
Have a great day!
Sally
Wednesday, June 13, 2007
A tale of 2 doctors...
Okay, so it was really one doctor and one nurse practitioner, but that didn't have quite the flash that the title did.
I was at the wound clinic this morning where we found new wounds and old wounds. The old wounds look good...the new wound looks like it could cause trouble. Add to that, I was running a bit of a temp while I was there and the nurse practitioner was less than satisfied with my progress for the day.
Then, I took myself to lunch and then came back to see Dr. Valitutto. We got a bit of a chuckle over the hospitalist that called him frantically while I was in the hospital declaring that I was on waaaay too much insulin. Dr. V's comment was, well, how is her sugar??? High, duh. So, he apparently told the hospitalist to put me on an insulin drip, but he didn't do that. I told Dr. V that I never even heard about the possibility of a drip, but he did at least increase my insulin a bit that day and then the resident bumped it back to normal the next day. You know, it seems that the hospitalists could get it through their heads that not all patients are the same. I don't have a functioning pancreas and then when you add infection, my sugars get crazy and hard to control! Why they won't listen, I just don't understand.
Anyway, because my sugars are still way off, we are increasing my insulin even more. We are going back to daily emails so he can see my numbers and then I see him again in 3 months or sooner if a problem arises. Of course, I can again demand that the hospitalists call him if I am inpatient in the mean time!
Last night, we went to meet Becky, Matt and Andrew at Culver's for a snack around 8ish. Around 9:30, I got the most intense abdominal pain I have had in quite some time and it really hasn't gone away. I feel like someone has a knife in my front left side and central abdomen. I'm having to take more Dilaudid and am still not comfortable. I don't know what the deal is.
Tomorrow, I am going to South Haven with Becky and Andrew to meet up with Sue and Jim at their trailer. It sounds like I am going to spend some quality time alone at the trailer because apparently the beach is down about 50-60 steps (actual stairs) and there is just no way that I could get up that many steps. So, I will have to stay at the trailer while they all go play at the beach. I am bummed because I would like to play in the sand with Andrew, but it is probably just as well because the last thing I need is sand in these wounds. Becky and Sue were worried that I would be bored, but like I said, it's no different than sitting alone at home! At least this way I will be able to socialize and have fun when the are back at the lot and we are fixing dinner and stuff. It sounds like Matt is going to join us after he gets out of work in the evening for dinner.
Oh, the other big news for tomorrow is that it looks like I am actually going to get my bike back after all this time. I emailed Lindsay last night and asked her if we could come get it tomorrow morning and she said yes. So, after giving up on the idea of ever seeing it again, looks like it will be mine after all!
Anyway, I am falling alseep here. I did not sleep well last night due to pain and so I think I will take some more meds and take a little nap...
Sally
I was at the wound clinic this morning where we found new wounds and old wounds. The old wounds look good...the new wound looks like it could cause trouble. Add to that, I was running a bit of a temp while I was there and the nurse practitioner was less than satisfied with my progress for the day.
Then, I took myself to lunch and then came back to see Dr. Valitutto. We got a bit of a chuckle over the hospitalist that called him frantically while I was in the hospital declaring that I was on waaaay too much insulin. Dr. V's comment was, well, how is her sugar??? High, duh. So, he apparently told the hospitalist to put me on an insulin drip, but he didn't do that. I told Dr. V that I never even heard about the possibility of a drip, but he did at least increase my insulin a bit that day and then the resident bumped it back to normal the next day. You know, it seems that the hospitalists could get it through their heads that not all patients are the same. I don't have a functioning pancreas and then when you add infection, my sugars get crazy and hard to control! Why they won't listen, I just don't understand.
Anyway, because my sugars are still way off, we are increasing my insulin even more. We are going back to daily emails so he can see my numbers and then I see him again in 3 months or sooner if a problem arises. Of course, I can again demand that the hospitalists call him if I am inpatient in the mean time!
Last night, we went to meet Becky, Matt and Andrew at Culver's for a snack around 8ish. Around 9:30, I got the most intense abdominal pain I have had in quite some time and it really hasn't gone away. I feel like someone has a knife in my front left side and central abdomen. I'm having to take more Dilaudid and am still not comfortable. I don't know what the deal is.
Tomorrow, I am going to South Haven with Becky and Andrew to meet up with Sue and Jim at their trailer. It sounds like I am going to spend some quality time alone at the trailer because apparently the beach is down about 50-60 steps (actual stairs) and there is just no way that I could get up that many steps. So, I will have to stay at the trailer while they all go play at the beach. I am bummed because I would like to play in the sand with Andrew, but it is probably just as well because the last thing I need is sand in these wounds. Becky and Sue were worried that I would be bored, but like I said, it's no different than sitting alone at home! At least this way I will be able to socialize and have fun when the are back at the lot and we are fixing dinner and stuff. It sounds like Matt is going to join us after he gets out of work in the evening for dinner.
Oh, the other big news for tomorrow is that it looks like I am actually going to get my bike back after all this time. I emailed Lindsay last night and asked her if we could come get it tomorrow morning and she said yes. So, after giving up on the idea of ever seeing it again, looks like it will be mine after all!
Anyway, I am falling alseep here. I did not sleep well last night due to pain and so I think I will take some more meds and take a little nap...
Sally
Tuesday, June 12, 2007
A better day...
Hello. I'm having a better day than yesterday. I guess that it all just piled up on me at once and I was starting to lose it. My abdomen really hurt and it seemed like people were mad (or as it was put to me, not mad, but frustrated) at me and I hadn't done anything to deserve it. I readily admit that I do things to piss people off quite frequently, but I didn't see it coming yesterday. So, that added to my pain just left me feeling quite lost.
Today is a better day though. My abdomen doesn't hurt as bad and it seems that all those that were frustrated with me yesterday have moved on from that and we are all okay again.
I had breakfast with my aunt this morning. We had a lovely time. I was really proud of her - she rode her bike to Bucky's! It was a good 20 minute ride from her house. I wish I had that kind of stamina. My plan is to go out and pump up the bike tires tonight when it cools down a bit. I really want to be able to start riding and getting some exercise. It isn't so much that I want the exercise for weight loss or anything, but I just want to be able to get out and feel the wind through my hair... Anyway, we had a nice breakfast.
It sounds like Becky, Andrew and I are going to go visit Sue and Jim in South Haven on Thursday. They have their trailer on a lot there and so we are going to go see the new digs.
Mom and I are going to have dinner tonight. I think we are having brats. It will be nice to have dinner with mom because it has been a while and it means for a quiet night at home. I stopped at the store today to get more brats because I got the wrong kind yesterday and mom won't eat those, so I had to get regular ones.
I also had to get some cool whip because Andrew and I are going to make Watergate Salad on Saturday. It's this delicious jello salad with fruit cocktail that Carol made last week when the girls came up to the hospital for our lunch. I got sugar-free jello and cool whip and lite fruit cocktail, so this is really something I can eat without getting myself into trouble.
Speaking of trouble, I have to get my log together because tomorrow is doctor day. I have my appointment at the wound clinic at 10 and with Dr. Valitutto at 1. Guess I will have to see if I can get a couple bucks from mom so I can get lunch while I am out there. I was really excited today because I got gas for only $2.87 a gallon!!! So, I spent my last $10 to get a half tank of gas...I couldn't resist for that price. So, now I have to ask for more money just to have lunch. Can you see where a person could get stressed out in my situation? I mean, I can see the frustration of constantly being asked for money, but can you see the frustration of always having to ask? It's totally demeaning to have to ask for $10 here and there so you can get gas or have lunch with your friends...I can't mail a package or buy shampoo without having to ask someone else for $. It does nothing for one's self-esteem or self-worth.
Anyway, I better get to cross-stitching. I know I say that most days, but it really is what I do. Oh, I did go downstairs and get to cleaning for about a half hour. I got my books from work put away, but I couldn't find my stacking file boxes. I will have to look for them again later. I am going to try to put in a little time each day cleaning and reorganizing down there and eventually it will get done. As for the cross-stitching, now that I am cross-stitching for Dimensions, I have timelines and have to get the projects done. I have it over half done and figure it should take me another 6 hours approximately to finish it. I will then send it back and see if they will use me as a consumer tester. I really hope that they find it acceptable...
Sally
Today is a better day though. My abdomen doesn't hurt as bad and it seems that all those that were frustrated with me yesterday have moved on from that and we are all okay again.
I had breakfast with my aunt this morning. We had a lovely time. I was really proud of her - she rode her bike to Bucky's! It was a good 20 minute ride from her house. I wish I had that kind of stamina. My plan is to go out and pump up the bike tires tonight when it cools down a bit. I really want to be able to start riding and getting some exercise. It isn't so much that I want the exercise for weight loss or anything, but I just want to be able to get out and feel the wind through my hair... Anyway, we had a nice breakfast.
It sounds like Becky, Andrew and I are going to go visit Sue and Jim in South Haven on Thursday. They have their trailer on a lot there and so we are going to go see the new digs.
Mom and I are going to have dinner tonight. I think we are having brats. It will be nice to have dinner with mom because it has been a while and it means for a quiet night at home. I stopped at the store today to get more brats because I got the wrong kind yesterday and mom won't eat those, so I had to get regular ones.
I also had to get some cool whip because Andrew and I are going to make Watergate Salad on Saturday. It's this delicious jello salad with fruit cocktail that Carol made last week when the girls came up to the hospital for our lunch. I got sugar-free jello and cool whip and lite fruit cocktail, so this is really something I can eat without getting myself into trouble.
Speaking of trouble, I have to get my log together because tomorrow is doctor day. I have my appointment at the wound clinic at 10 and with Dr. Valitutto at 1. Guess I will have to see if I can get a couple bucks from mom so I can get lunch while I am out there. I was really excited today because I got gas for only $2.87 a gallon!!! So, I spent my last $10 to get a half tank of gas...I couldn't resist for that price. So, now I have to ask for more money just to have lunch. Can you see where a person could get stressed out in my situation? I mean, I can see the frustration of constantly being asked for money, but can you see the frustration of always having to ask? It's totally demeaning to have to ask for $10 here and there so you can get gas or have lunch with your friends...I can't mail a package or buy shampoo without having to ask someone else for $. It does nothing for one's self-esteem or self-worth.
Anyway, I better get to cross-stitching. I know I say that most days, but it really is what I do. Oh, I did go downstairs and get to cleaning for about a half hour. I got my books from work put away, but I couldn't find my stacking file boxes. I will have to look for them again later. I am going to try to put in a little time each day cleaning and reorganizing down there and eventually it will get done. As for the cross-stitching, now that I am cross-stitching for Dimensions, I have timelines and have to get the projects done. I have it over half done and figure it should take me another 6 hours approximately to finish it. I will then send it back and see if they will use me as a consumer tester. I really hope that they find it acceptable...
Sally
Monday, June 11, 2007
A little less frustrated...
Okay, just thought I would post a quick note to say that I am not quite as frustrated and down as I was earlier. I am still frustrated with someone, but I suppose that will take care of itself with time - it usually does. She likely has something going on in another environment and I am just getting the brunt of it - that's what usually is the case.
Anyway, I am still unhappy with life, but things seem a little less desperate than they did before...
Sally
Anyway, I am still unhappy with life, but things seem a little less desperate than they did before...
Sally
Frustrated with life
You know, frustration can be frustrating for many people all at the same time. I am caught in a situation where one person is frustrated regarding the actions of myself and someone else, but I am frustrated because of the financial situation that has put me in this situation that frustrates the first person. Does that make sense? I'm tired of having no money and not being able to do anything without asking for money from someone else or having someone else pay. I realize that it is not fair to expect other people to pay for everything for me and, don't get me wrong, I don't think that my financial instability is the responsibility of others either. The problem is that I can't do anything about it unless I go back to work, which everyone agrees is not the answer either.
What I don't understand is how a person is expected to be able to survive like this. Social Security Disability says that I should get approximately $1000/month, but it won't arrive until I have been approved, which takes no less than 6 months and can take literally years to get approval. How are you supposed to survive on no money? How do those people you see on TV that spend thousands of dollars a month on junk food get that money? I've paid into the system and I am not trying to purpetrate fraud with a faux disability - I deserve that money...I paid in and now I need to redeem it - GIVE ME MY MONEY!
I have to call the state people again this week. I am going to check when I go to my other doctors on Wednesday, but apparently my family doctor still has not even gotten a request from the state for records. They got the request in April from SSDI, but nothing from the state. That means that not only has my case worker been lying that he was waiting only on records from Bronson, but he is also lying about even sending out the other requests! No wonder I have gotten no where with this! So, I am still waiting for my medicaid. Apparently, Borgess is paying my COBRA again since I was hospitalized and had a few added expenses. It appears that they have actually paid through September, which I find amazing, but I am very thankful for. They may not be my favorite hospital in terms of the care I receive or their loving collections department, but I do appreciate that they are helping out with the COBRA situation. At least I have insurance that will cover those expenses and also my prescriptions. The copays are still too much, but it is better than paying cash for them all!
I am also frustrated with my health. I went to the grocery store today (at least that lousy case worker did get me the food stamps) and got food. We were running low on food before I went to the hospital, but it was really bad by the time I got out. Mom doesn't ever bother to dump food out of the fridge - there were 2 gallons of rotten milk in the fridge and she didn't bother to dump either of them. Anyway, I was talking about my health. I get so frustrated when I go to the grocery and I am so covered in sweat by the time I leave that people stare at me. I had wet hair when I arrived (I had just taken a shower) and was just as wet when I left. Mom came home 2 hours later and my shirt was still wet from all the sweat. My stomach hurts and I am so tired. I am just tired and frustrated and all I want to do is cry, but that doesn't help anything - I know because I have tried that several times tonight. I don't know what to do. Everyone seems to be mad at me, or at least frustrated with me. I don't know how to make it better. I feel like I am trapped in a hell that I can't get out of. The only answer seems to be to go back to work and make it work because I can't keep disappointing people. I am disappointing everyone and I hate it. I feel like crap and it doesn't seem to get any better, so why not go back to work...the worst that will happen is that it will kill me - my luck, it will just make me miserable though. I wish my life could go back to the way it used to be. Turns out, the life I thought was tough 5 years ago was nothing in comparison. I want to go back to a world where my dad was here to tell me what to do and to give me a big hug and tell me it will all be okay...but he can't. It's not fair. What did I do to deserve this? Am I really that horrible a person? Have I been that wretched to people that this is what I get in return?
So, obviously, I am just frustrated with everything. It will get better, I have to believe that it will because otherwise, there is nothing worth going on for. I know though, that there is something to live for. If nothing else, Andrew makes it worthwhile. He spent the weekend with his grandparents and I missed him so much. He was gone Thursday night until Sunday and I just talked to him a little while ago for the first time since he got back. He can put the smile on my face no matter how desperate I feel. He informed me that he played with toys and with Snowy (their dog). He also told me that he had a good time. I'm glad that he went and I'm really glad that he had fun. He did fall out of bed, again, but seems to be no worse for wear.
I guess I better get to my cross-stitching. I haven't worked on it today yet. This stamped pattern cross-stitch really is a lot harder than I thought it would be. I always thought it was kind of cross-stitch for dummies, but turns out I am the dummy! I think I have spent more time taking stitches out than putting them in! I have to have it done by the end of the month, so I better get working!
Sally
What I don't understand is how a person is expected to be able to survive like this. Social Security Disability says that I should get approximately $1000/month, but it won't arrive until I have been approved, which takes no less than 6 months and can take literally years to get approval. How are you supposed to survive on no money? How do those people you see on TV that spend thousands of dollars a month on junk food get that money? I've paid into the system and I am not trying to purpetrate fraud with a faux disability - I deserve that money...I paid in and now I need to redeem it - GIVE ME MY MONEY!
I have to call the state people again this week. I am going to check when I go to my other doctors on Wednesday, but apparently my family doctor still has not even gotten a request from the state for records. They got the request in April from SSDI, but nothing from the state. That means that not only has my case worker been lying that he was waiting only on records from Bronson, but he is also lying about even sending out the other requests! No wonder I have gotten no where with this! So, I am still waiting for my medicaid. Apparently, Borgess is paying my COBRA again since I was hospitalized and had a few added expenses. It appears that they have actually paid through September, which I find amazing, but I am very thankful for. They may not be my favorite hospital in terms of the care I receive or their loving collections department, but I do appreciate that they are helping out with the COBRA situation. At least I have insurance that will cover those expenses and also my prescriptions. The copays are still too much, but it is better than paying cash for them all!
I am also frustrated with my health. I went to the grocery store today (at least that lousy case worker did get me the food stamps) and got food. We were running low on food before I went to the hospital, but it was really bad by the time I got out. Mom doesn't ever bother to dump food out of the fridge - there were 2 gallons of rotten milk in the fridge and she didn't bother to dump either of them. Anyway, I was talking about my health. I get so frustrated when I go to the grocery and I am so covered in sweat by the time I leave that people stare at me. I had wet hair when I arrived (I had just taken a shower) and was just as wet when I left. Mom came home 2 hours later and my shirt was still wet from all the sweat. My stomach hurts and I am so tired. I am just tired and frustrated and all I want to do is cry, but that doesn't help anything - I know because I have tried that several times tonight. I don't know what to do. Everyone seems to be mad at me, or at least frustrated with me. I don't know how to make it better. I feel like I am trapped in a hell that I can't get out of. The only answer seems to be to go back to work and make it work because I can't keep disappointing people. I am disappointing everyone and I hate it. I feel like crap and it doesn't seem to get any better, so why not go back to work...the worst that will happen is that it will kill me - my luck, it will just make me miserable though. I wish my life could go back to the way it used to be. Turns out, the life I thought was tough 5 years ago was nothing in comparison. I want to go back to a world where my dad was here to tell me what to do and to give me a big hug and tell me it will all be okay...but he can't. It's not fair. What did I do to deserve this? Am I really that horrible a person? Have I been that wretched to people that this is what I get in return?
So, obviously, I am just frustrated with everything. It will get better, I have to believe that it will because otherwise, there is nothing worth going on for. I know though, that there is something to live for. If nothing else, Andrew makes it worthwhile. He spent the weekend with his grandparents and I missed him so much. He was gone Thursday night until Sunday and I just talked to him a little while ago for the first time since he got back. He can put the smile on my face no matter how desperate I feel. He informed me that he played with toys and with Snowy (their dog). He also told me that he had a good time. I'm glad that he went and I'm really glad that he had fun. He did fall out of bed, again, but seems to be no worse for wear.
I guess I better get to my cross-stitching. I haven't worked on it today yet. This stamped pattern cross-stitch really is a lot harder than I thought it would be. I always thought it was kind of cross-stitch for dummies, but turns out I am the dummy! I think I have spent more time taking stitches out than putting them in! I have to have it done by the end of the month, so I better get working!
Sally
Sunday, June 10, 2007
Shop 'till you drop
Well, I think I did that yesterday! Mom and I were looking for something different to do other than sit around the house all day and we finally decided on going to Michigan City to the outlet mall. Sadly, our reason for going was to go to the Jockey store...I wanted new underwear and she wanted new bras! How's that for strange reasons to go shopping? Of course, we found a few other things to get too. I got a couple t-shirts from Nautica and one from Timberland and then I got a couple dress shirts to wear when going out. They all look really nice and the dress shirts are flattering and comfortable.
Anyway, it is really good to be home from the hospital. You know, I really don't like being there. I try to make it as homey as possible and try to make it as tolerable as possible, but it's hard. I get so lonely. I know that people think there are staff members constantly in your room, which does seem to be the case sometimes, but they are there to perform a task and get out - they aren't there to sit and talk to you. So, it gets very lonely and quiet. I just wish that there was another way to deal with things so I wouldn't have to go so often.
Well, I had better try to get some things done. I have a couple things to do today and then I have a bunch of stuff on my agenda for tomorrow - including grocery shopping!
Have a great day!
Sally
Anyway, it is really good to be home from the hospital. You know, I really don't like being there. I try to make it as homey as possible and try to make it as tolerable as possible, but it's hard. I get so lonely. I know that people think there are staff members constantly in your room, which does seem to be the case sometimes, but they are there to perform a task and get out - they aren't there to sit and talk to you. So, it gets very lonely and quiet. I just wish that there was another way to deal with things so I wouldn't have to go so often.
Well, I had better try to get some things done. I have a couple things to do today and then I have a bunch of stuff on my agenda for tomorrow - including grocery shopping!
Have a great day!
Sally
Friday, June 8, 2007
Paroled from the pokie...
I'm home. Didn't even notice that I was gone, did you? Ha Ha Ha. I was back in the hospital. I was admitted following my appointment at the wound clinic last Friday and was discharged today (1 week). I ended up with cellulitis as well as wounds from where the stretch marks had torn and tracts had formed that at one point were 5 inches deep - yuck. So, after a week of packing the tracts and IV antibiotics, I am doing much better and was deemed ready for discharge today.
I am a bit tired tonight though and so this is going to be a short little message and I will try to catch up with everyone later this weekend. Just wanted to let you all know that I am home!
Sally
I am a bit tired tonight though and so this is going to be a short little message and I will try to catch up with everyone later this weekend. Just wanted to let you all know that I am home!
Sally
Wednesday, May 30, 2007
Not the day I had planned...
So, I had an appointment at 9:30am at the wound clinic this morning. I thought I would go there and be home by 11 at the latest and then go out with Carol this afternoon/evening. Well, you know what they say about the best laid plans of mice and men... I just got home at 4:30pm.
As I believe I had mentioned before, I am having a problem with stretch marks getting thin and tearing. Well, I have several that have torn and one is especially large. I was concerned that it had developed a tract/fistula (tunnel) and that was confirmed this morning by the nurse practitioner. She was concerned though because she was able to go 5 cm with a q-tip and didn't hit the end of the tract. So, she sent me for a CT scan to see if the fistula goes to the bowel and I have to return there on Friday to have it repacked and to get the results of the CT scan. If it does connect to the bowel, then my surgeon will have to be contacted and I guess I would have to have it surgically repaired. I don't really know all the repercussions of what can happen here, but I am trying to just look at the easy end of this. I am just going with the idea that it doesn't connect and that it will be no problem.
Otherwise, things are going okay. More abdominal pain lately, but in hindsight, this is probably related to this fistula problem. Lungs are doing a little better...but, I am working hard at keeping out of the heat and humidity because when I go out there, things get a little tougher.
Hope the rest of you are having a good day. I will update again when I have more information about the CT scan...
Sally
As I believe I had mentioned before, I am having a problem with stretch marks getting thin and tearing. Well, I have several that have torn and one is especially large. I was concerned that it had developed a tract/fistula (tunnel) and that was confirmed this morning by the nurse practitioner. She was concerned though because she was able to go 5 cm with a q-tip and didn't hit the end of the tract. So, she sent me for a CT scan to see if the fistula goes to the bowel and I have to return there on Friday to have it repacked and to get the results of the CT scan. If it does connect to the bowel, then my surgeon will have to be contacted and I guess I would have to have it surgically repaired. I don't really know all the repercussions of what can happen here, but I am trying to just look at the easy end of this. I am just going with the idea that it doesn't connect and that it will be no problem.
Otherwise, things are going okay. More abdominal pain lately, but in hindsight, this is probably related to this fistula problem. Lungs are doing a little better...but, I am working hard at keeping out of the heat and humidity because when I go out there, things get a little tougher.
Hope the rest of you are having a good day. I will update again when I have more information about the CT scan...
Sally
Friday, May 25, 2007
Made it through the first heat wave...
Man, did it get hot here this week. Okay, so I suppose it wasn't all that bad, but for May, it was pretty darned hot. It got up to the high 80s - low 90s for 3 days. Fortunately, I turned the AC on Tuesday when the house got up to about 76 and I said - okay, that's it! I just don't seem to tolerate the heat very well anymore. I am told that this is yet another glorious effect of my malfunctioning pancreas and that I am going to find more and more that I don't tolerate extremes in temperature in either direction. I definitely noticed it with the heat. I mean, I sweat a lot even on a good day...let's not discuss how sweaty I was in the heat!
Tomorrow, I have to get up and be at the hospital around 8:30am for my next IVIG infusion. I am less than thrilled to be up so early for the infusion being that I would rather be here playing with Andrew, but what choice do I have? I could have rescheduled it, but I hate to be a pest to the infectious disease office. So, my cross-stitch and I will be off and headed to the hospital nice and early. I have tried reading there, but it never works...they have TVs in the room and it is just easier to watch TV and cross-stitch.
On the cross-stitch front, I had lunch with my aunt Sue this week and she was telling me about an opportunity with a craft company, Dimensions. She met a woman who does consumer testing for them. So, I emailed them and they responded back that they don't have openings in counted cross-stitch, but they do in stamped cross-stitch. So, I replied back that I would be willing to do stamped cross-stitch. What happens is this - they send you a kit (either one that has not gone into production or one that just needs to be reviewed) and you do it and send it back to them. They then examine it to determine if the pattern is the way they want it and if there is enough floss (thread) for the project. Then, they send it back to you to keep! So, it's a great opportunity for me to do some cross-stitch with a purpose! I mean, I am sitting here doing it anyway, I might as well have a purpose! I'm going to check with a couple other companies that I order products from and see if they do it as well. It's a good thing for me to have something to do. The project I am taking for tomorrow is actually a sippy cup for a friend who just had a baby...
In terms of my health, I'm not really feeling all that great. I have been trying to hide it from everyone, but I think mom is starting to catch on. Food doesn't like me. I had been throwing up for the last few weeks, but that has stopped - thankfully. Unfortunately, it seems though that I eat and am in the bathroom within about 10 minutes. It's like the food doesn't even stop and say hello to my intestines! I feel like I am gaining weight though like a crazy person. I am feeling more and more bloated and fat. I am to the point that I wish it would either get better or worse, but please don't stay the same! My back hurts and I am just so worn out. I can't walk for very long before my body just revolts. To make matters worse, my lungs aren't enjoying the changes in weather, so that just adds to the trouble. 'Tis the season...
Anyway, enough whining from me! I think that I shall grab my book and go outside for a while. Ugh - that reminds me...this will make you laugh. I went to the library today for the first time since before I was originally hospitalized. I knew that there was a fine because I had books out when I went into the hospital and, funny enough, my family's first concern was not returning my library books while I was lying in the ICU. So, I get to the counter and said that I wasn't sure if my account was even open because it has been 2 years. She looks and says - oh, you owe $29 on your primary account and then on your Ready to Read account (the children's book account I had from when I volunteered for the library) you owe $375. Apparently, they are charging me for the books that are still out on that RTR account even though they said that the books were never "due" because of the program I was working with and that as long as kids were enjoying the books, it didn't matter. Andrew has the books and loves them, so I just didn't worry about it. So, now I have to return all those books - no big deal because they are still all with Andrew and Becky has already found them. The other account though, I asked her if there was someone I could talk to about the fine because there were extenuating circumstances and I was wondering if they would wave the fine - I have ALWAYS paid my fines before and I admit that I regularly turn them in late, but I never ask for any leniency because I know I am late. This was different though. She looks at me and says "no, I'm the branch manager." Okay...I'll just wait and go downtown another day and talk to someone there...Did they really think I would be writing a check for $400 to check out 2 library books??? Good grief!
Anyway, that was my funny for the day...
Have a great day!
Sally
Tomorrow, I have to get up and be at the hospital around 8:30am for my next IVIG infusion. I am less than thrilled to be up so early for the infusion being that I would rather be here playing with Andrew, but what choice do I have? I could have rescheduled it, but I hate to be a pest to the infectious disease office. So, my cross-stitch and I will be off and headed to the hospital nice and early. I have tried reading there, but it never works...they have TVs in the room and it is just easier to watch TV and cross-stitch.
On the cross-stitch front, I had lunch with my aunt Sue this week and she was telling me about an opportunity with a craft company, Dimensions. She met a woman who does consumer testing for them. So, I emailed them and they responded back that they don't have openings in counted cross-stitch, but they do in stamped cross-stitch. So, I replied back that I would be willing to do stamped cross-stitch. What happens is this - they send you a kit (either one that has not gone into production or one that just needs to be reviewed) and you do it and send it back to them. They then examine it to determine if the pattern is the way they want it and if there is enough floss (thread) for the project. Then, they send it back to you to keep! So, it's a great opportunity for me to do some cross-stitch with a purpose! I mean, I am sitting here doing it anyway, I might as well have a purpose! I'm going to check with a couple other companies that I order products from and see if they do it as well. It's a good thing for me to have something to do. The project I am taking for tomorrow is actually a sippy cup for a friend who just had a baby...
In terms of my health, I'm not really feeling all that great. I have been trying to hide it from everyone, but I think mom is starting to catch on. Food doesn't like me. I had been throwing up for the last few weeks, but that has stopped - thankfully. Unfortunately, it seems though that I eat and am in the bathroom within about 10 minutes. It's like the food doesn't even stop and say hello to my intestines! I feel like I am gaining weight though like a crazy person. I am feeling more and more bloated and fat. I am to the point that I wish it would either get better or worse, but please don't stay the same! My back hurts and I am just so worn out. I can't walk for very long before my body just revolts. To make matters worse, my lungs aren't enjoying the changes in weather, so that just adds to the trouble. 'Tis the season...
Anyway, enough whining from me! I think that I shall grab my book and go outside for a while. Ugh - that reminds me...this will make you laugh. I went to the library today for the first time since before I was originally hospitalized. I knew that there was a fine because I had books out when I went into the hospital and, funny enough, my family's first concern was not returning my library books while I was lying in the ICU. So, I get to the counter and said that I wasn't sure if my account was even open because it has been 2 years. She looks and says - oh, you owe $29 on your primary account and then on your Ready to Read account (the children's book account I had from when I volunteered for the library) you owe $375. Apparently, they are charging me for the books that are still out on that RTR account even though they said that the books were never "due" because of the program I was working with and that as long as kids were enjoying the books, it didn't matter. Andrew has the books and loves them, so I just didn't worry about it. So, now I have to return all those books - no big deal because they are still all with Andrew and Becky has already found them. The other account though, I asked her if there was someone I could talk to about the fine because there were extenuating circumstances and I was wondering if they would wave the fine - I have ALWAYS paid my fines before and I admit that I regularly turn them in late, but I never ask for any leniency because I know I am late. This was different though. She looks at me and says "no, I'm the branch manager." Okay...I'll just wait and go downtown another day and talk to someone there...Did they really think I would be writing a check for $400 to check out 2 library books??? Good grief!
Anyway, that was my funny for the day...
Have a great day!
Sally
Monday, May 21, 2007
Death by procrastination...
I think that is what the state of Michigan is going for...if they procrastinate long enough with regards to my medicaid application, I will die before they have to pay! It's the new budget solution!!!
I just spoke with my case worker after leaving yet another message for him and he informed me that he still doeesn't have all the paperwork from the hospitals. He is waiting for records from Bronson and Select. This is the same thing he told me 2 weeks ago and said that he would take care of it then! Well, he informed me today that he still hasn't gotten the records, so he will go ahead and send out a second request today/tomorrow. He said that either they didn't get it or maybe in the shuffle of everything he just didn't get the request out for those 2 hospitals...you know, he says, you did have a lot of places to send requests to. UGH! He then told me that once he gets those records, he will take my records to the MRT (medical review team) and see if it can be expedited. I tried to express to him that I am getting desperate. The hospital called me today to tell me that they won't be paying anymore COBRA, so as of the end of the month, I am out of insurance, which means I have no way of paying for prescriptions as of May 31. I asked my case worker what I am to do and he said that there is nothing he can do other than try to get me approved as soon as he can and that even once I am approved, there are likely medications that I take now that won't be covered. I realize that is the case, but it will cover some and we will try to make changes to get the others covered or try other medications that are covered. Until I get approval though, I am screwed!
I am also trying to decide what to do about my bankruptcy. I feel like I should wait until I have my medicaid approval before I file for bankruptcy because if by some chance I am not approved, I will end up with a bunch of other bills that will need to be included. The problem though is that I really need to get it filed so I can get some of these people off my back.
In addition, I have to decide what to do about school. If I include my school loans in my bankruptcy, I am done going to school. If I want to go back, then I can't file against them, but I still can't afford to pay them. I don't know if I am ready to admit that I can't do the work and thus there is no need to finish school. It's been a big step admitting that I can't work right now - I don't know that I am ready to say that I will never be able to go back into an office...
So, I went to the PCP today and discussed with him a couple problems I am having. One of them is that I keep falling asleep. There are days that I am so exhausted that I sleep probably 18-20 hours a day - it's ridiculous. For instance, I was watching American Idol last week with mom and kept falling asleep even while talking to mom and then I would wake up and be completely disoriented. Other days, it is no problem at all. So, we are trying another medication, Provigil, to see if that helps. It is likely a side effect of the pain meds because it has gotten worse since we had to increase the dose of the meds. Hopefully this will help, although I probably can't afford it after this month! I am also going to start checking my blood pressure upstairs on a more regular basis. I have been having an increasing problem with my legs getting very spaghetti-like and then a head rush after taking a few steps. Yesterday, it was so bad that I slammed into a cupboard in the kitchen and bruised myself. It had been happening on an infrequent basis, but in recent weeks it has gotten worse. I didn't want to worry anyone here, but I felt like I had to address it with the doctor because it has gotten worse. I worry that I am going to get hurt. Hopefully, we can figure things out. I don't know if it is a BP issue or a sugar issue.
On my way home, I took myself out to lunch. Today is the only day I had an appointment scheduled (other than my weekly wound care appointment) and so I thought it was fair to do that. I had a lovely sandwich and strawberry shortcake and read my book. I am currently reading "The Innocent Man" by John Grisholm. It isn't my favorite book, but it's okay. It definitely started out slowly, but it does seem to be picking up. I am looking forward to my next book to read - "Dear John" by Nicholas Sparks. I have started reading it a little (I wanted to read out on the deck and the other book was downstairs) and it seems like a great book. After that, I think I will try to get my hands on either the new Maive Binchy or Jody Piccoult book...I want to read them both. I need to get to the library and pay my fine so I can read. I still have a fine from when I was in the hospital last year. I had a bunch of books out when I was admitted and somehow returning my library books were not on the top of my mind as I was laying there in the ICU! Go figure!
Anyway, that's about it from here. It's supposed to get really warm here this week (86-90 degrees!) and so I figure the AC will be turned on soon...I just don't tolerate the heat very well - never have, but these days it is even worse. I sweat bad enough on a cold day...imagine the puddles I can produce in the heat and humidity!
Hope you all have a great day!
Sally
I just spoke with my case worker after leaving yet another message for him and he informed me that he still doeesn't have all the paperwork from the hospitals. He is waiting for records from Bronson and Select. This is the same thing he told me 2 weeks ago and said that he would take care of it then! Well, he informed me today that he still hasn't gotten the records, so he will go ahead and send out a second request today/tomorrow. He said that either they didn't get it or maybe in the shuffle of everything he just didn't get the request out for those 2 hospitals...you know, he says, you did have a lot of places to send requests to. UGH! He then told me that once he gets those records, he will take my records to the MRT (medical review team) and see if it can be expedited. I tried to express to him that I am getting desperate. The hospital called me today to tell me that they won't be paying anymore COBRA, so as of the end of the month, I am out of insurance, which means I have no way of paying for prescriptions as of May 31. I asked my case worker what I am to do and he said that there is nothing he can do other than try to get me approved as soon as he can and that even once I am approved, there are likely medications that I take now that won't be covered. I realize that is the case, but it will cover some and we will try to make changes to get the others covered or try other medications that are covered. Until I get approval though, I am screwed!
I am also trying to decide what to do about my bankruptcy. I feel like I should wait until I have my medicaid approval before I file for bankruptcy because if by some chance I am not approved, I will end up with a bunch of other bills that will need to be included. The problem though is that I really need to get it filed so I can get some of these people off my back.
In addition, I have to decide what to do about school. If I include my school loans in my bankruptcy, I am done going to school. If I want to go back, then I can't file against them, but I still can't afford to pay them. I don't know if I am ready to admit that I can't do the work and thus there is no need to finish school. It's been a big step admitting that I can't work right now - I don't know that I am ready to say that I will never be able to go back into an office...
So, I went to the PCP today and discussed with him a couple problems I am having. One of them is that I keep falling asleep. There are days that I am so exhausted that I sleep probably 18-20 hours a day - it's ridiculous. For instance, I was watching American Idol last week with mom and kept falling asleep even while talking to mom and then I would wake up and be completely disoriented. Other days, it is no problem at all. So, we are trying another medication, Provigil, to see if that helps. It is likely a side effect of the pain meds because it has gotten worse since we had to increase the dose of the meds. Hopefully this will help, although I probably can't afford it after this month! I am also going to start checking my blood pressure upstairs on a more regular basis. I have been having an increasing problem with my legs getting very spaghetti-like and then a head rush after taking a few steps. Yesterday, it was so bad that I slammed into a cupboard in the kitchen and bruised myself. It had been happening on an infrequent basis, but in recent weeks it has gotten worse. I didn't want to worry anyone here, but I felt like I had to address it with the doctor because it has gotten worse. I worry that I am going to get hurt. Hopefully, we can figure things out. I don't know if it is a BP issue or a sugar issue.
On my way home, I took myself out to lunch. Today is the only day I had an appointment scheduled (other than my weekly wound care appointment) and so I thought it was fair to do that. I had a lovely sandwich and strawberry shortcake and read my book. I am currently reading "The Innocent Man" by John Grisholm. It isn't my favorite book, but it's okay. It definitely started out slowly, but it does seem to be picking up. I am looking forward to my next book to read - "Dear John" by Nicholas Sparks. I have started reading it a little (I wanted to read out on the deck and the other book was downstairs) and it seems like a great book. After that, I think I will try to get my hands on either the new Maive Binchy or Jody Piccoult book...I want to read them both. I need to get to the library and pay my fine so I can read. I still have a fine from when I was in the hospital last year. I had a bunch of books out when I was admitted and somehow returning my library books were not on the top of my mind as I was laying there in the ICU! Go figure!
Anyway, that's about it from here. It's supposed to get really warm here this week (86-90 degrees!) and so I figure the AC will be turned on soon...I just don't tolerate the heat very well - never have, but these days it is even worse. I sweat bad enough on a cold day...imagine the puddles I can produce in the heat and humidity!
Hope you all have a great day!
Sally
Saturday, May 19, 2007
Unexpected blessings...
I had an unexpected blessing this morning land on my doorstep! Andrew came to see me for the day. He was supposed to have a babysitter at home today, but she never showed up. So, Becky called me about 9:35 and said - Andrew is on his way over! So, I quick jumped through the shower and threw on some clothes and made it upstairs before he got here. We have had a nice day - coloring, watching cartoons, etc. Grandma even went and got us McDonald's! It's just been a nice day together...he is currently taking himself a little nap because they are having some friends from out of town tonight and so he is likely going to be up a bit later than usual.
As for me, I am doing okay. I saw Dr. Dewan again this week (the GI doc) and I still don't like him. He just isn't a nice guy - at least not to me. He acts like I am not worth his time and that I am just a bother to him. I told him that I am not interested in going to Indiana for the ERCP and he said fine. When the PA came in before him and asked me about the ERCP, I told her no and she enquired as to why. I told her that I am tired of being poked at when there is no obvious reason for it and that my research has also shown that the ERCP often leads to an acute pancreatitis attack, which I have no desire to egg on! She said she completely understood that, but figured that Dr. Dewan would give me grief for it. He didn't...once again, he didn't seem to care one way or the other.
At the end of the appointment, I asked him what I should expect from chronic pancreatitis, although I realize he has no crystal ball, I figured he could give me some idea. He informed me that this is it - pain, nausea, vomiting - basically, hell. I said...so, life sucks and it will just get worse? This is all you have to offer me? and he said...yes and turned to leave. Nice, huh?
So, I guess I am going to look for a new GI. I mean, I realize that there is really nothing that can be done for me because I am not willing to have a pancreatectomy (removal of my pancreas) or other surgeries and invasive procedures, but I could stand to have someone who is at least supportive and friendly. Does that seem unreasonable?
I wasn't feeling all that great last night. I have been having a problem with vomiting for the last week or so. It seems like every 4th-5th meal, I throw it up. Apparently, this is because the gastroparesis is getting worse. The GI doc did start me on another medication this week to see if we could get my digestion moving a little faster.
The good news is that my lungs seem to be pretty happy. I don't like the fact that I am on 24 mg of Medrol because of all the negative effects of it, but I am so grateful that I can function without gasping all the time. It is so nice not to be in the ER struggling to breathe every few weeks. Maybe in time, I will be able to reduce the dose, but for now, it seems to managing things. Each time I have tried to taper, things go bad and I end up bursting. So, I would rather stay on a steady dose than keep bursting.
Anyway, that's about all that is going on here. I think I hear Drew singing in the other room, so I better go check up on him. Have a great day!
Sally
As for me, I am doing okay. I saw Dr. Dewan again this week (the GI doc) and I still don't like him. He just isn't a nice guy - at least not to me. He acts like I am not worth his time and that I am just a bother to him. I told him that I am not interested in going to Indiana for the ERCP and he said fine. When the PA came in before him and asked me about the ERCP, I told her no and she enquired as to why. I told her that I am tired of being poked at when there is no obvious reason for it and that my research has also shown that the ERCP often leads to an acute pancreatitis attack, which I have no desire to egg on! She said she completely understood that, but figured that Dr. Dewan would give me grief for it. He didn't...once again, he didn't seem to care one way or the other.
At the end of the appointment, I asked him what I should expect from chronic pancreatitis, although I realize he has no crystal ball, I figured he could give me some idea. He informed me that this is it - pain, nausea, vomiting - basically, hell. I said...so, life sucks and it will just get worse? This is all you have to offer me? and he said...yes and turned to leave. Nice, huh?
So, I guess I am going to look for a new GI. I mean, I realize that there is really nothing that can be done for me because I am not willing to have a pancreatectomy (removal of my pancreas) or other surgeries and invasive procedures, but I could stand to have someone who is at least supportive and friendly. Does that seem unreasonable?
I wasn't feeling all that great last night. I have been having a problem with vomiting for the last week or so. It seems like every 4th-5th meal, I throw it up. Apparently, this is because the gastroparesis is getting worse. The GI doc did start me on another medication this week to see if we could get my digestion moving a little faster.
The good news is that my lungs seem to be pretty happy. I don't like the fact that I am on 24 mg of Medrol because of all the negative effects of it, but I am so grateful that I can function without gasping all the time. It is so nice not to be in the ER struggling to breathe every few weeks. Maybe in time, I will be able to reduce the dose, but for now, it seems to managing things. Each time I have tried to taper, things go bad and I end up bursting. So, I would rather stay on a steady dose than keep bursting.
Anyway, that's about all that is going on here. I think I hear Drew singing in the other room, so I better go check up on him. Have a great day!
Sally
Monday, May 14, 2007
It's been a few days...
It's been a few days since I posted last. I guess that things got a little busier than I realized. Actually, I think it has more to do with the fact that I just haven't been at my desk in a few days.
Friday afternoon, I realized that I had cellulitis, so I was off to the doctor to get some antibiotics and ointment to get rid of that. The amazing part of this story is not that I got cellulitis AGAIN, but that for the first time, I seem to be getting rid of it without being admitted to the hospital! Let's all do a little dance for this bit of good news! Maybe the IVIG is working after all!!!
Unfortunately, the pancreatitis still seems to be flaring a little, though I do think it is a little better now than it has been the last week or so. The pain has not been quite as bad, though I am still very uncomfortable, quite nauseated and extremely tired. Yesterday, I went to bed at 9:30pm and was sound asleep until about 10am today! That is a freakish amount of sleep for me. It seems like I go a couple nights with very little sleep because I am just too uncomfortable and then one night where I sleep like a log. Wonder what that means for tonight? I'm tired...but, we shall see as that doesn't always mean anything.
We had a very nice Mother's Day. We went to Matt, Becky and Andrew's for dinner. Matt made a really tasty dinner for the 3 ladies of the family and then Andrew presented us with our gifts. I got an adorable frame with a picture of him and I that says something about Aunts being like Mommies, only better. :o) I also got a card that said that I am the "funnest grownup" he knows. Becky is always really good about acknowledging me for Mother's/Aunt's Day and I really appreciate it.
So, that's about it from here. I am still waiting to hear from my caseworker about my Medicaid. I guess I will be calling him yet again tomorrow to see what is up. Wednesday and Thursday are filled with doctors appointments. Friday, I have nothing scheduled because Alice and I have changed our plans to Saturday. I don't know if I am babysitting, but if not, we will probably go for lunch and then maybe to a movie or something. The local theater runs movies for $3, so we might do that.
Anyway, hope you all have a great day!
Sally
Friday afternoon, I realized that I had cellulitis, so I was off to the doctor to get some antibiotics and ointment to get rid of that. The amazing part of this story is not that I got cellulitis AGAIN, but that for the first time, I seem to be getting rid of it without being admitted to the hospital! Let's all do a little dance for this bit of good news! Maybe the IVIG is working after all!!!
Unfortunately, the pancreatitis still seems to be flaring a little, though I do think it is a little better now than it has been the last week or so. The pain has not been quite as bad, though I am still very uncomfortable, quite nauseated and extremely tired. Yesterday, I went to bed at 9:30pm and was sound asleep until about 10am today! That is a freakish amount of sleep for me. It seems like I go a couple nights with very little sleep because I am just too uncomfortable and then one night where I sleep like a log. Wonder what that means for tonight? I'm tired...but, we shall see as that doesn't always mean anything.
We had a very nice Mother's Day. We went to Matt, Becky and Andrew's for dinner. Matt made a really tasty dinner for the 3 ladies of the family and then Andrew presented us with our gifts. I got an adorable frame with a picture of him and I that says something about Aunts being like Mommies, only better. :o) I also got a card that said that I am the "funnest grownup" he knows. Becky is always really good about acknowledging me for Mother's/Aunt's Day and I really appreciate it.
So, that's about it from here. I am still waiting to hear from my caseworker about my Medicaid. I guess I will be calling him yet again tomorrow to see what is up. Wednesday and Thursday are filled with doctors appointments. Friday, I have nothing scheduled because Alice and I have changed our plans to Saturday. I don't know if I am babysitting, but if not, we will probably go for lunch and then maybe to a movie or something. The local theater runs movies for $3, so we might do that.
Anyway, hope you all have a great day!
Sally
Wednesday, May 9, 2007
Let's go Kroger-ing, Kroger-ing...
Remember the old song for Kroger? Ah well, maybe I am old... I didn't go to Kroger today anyway, it was Meijer - and it really wasn't any fun.
My day started with going to the wound care clinic and then to lunch and then to Meijer to do the grocery shopping. The wound care clinic was fine. We decided to continue with the same silver stuff for another week and see what happens. It seems to be doing fine for now - the wound isn't getting any smaller, but it isn't getting any bigger either. Honestly, I don't think it will ever get smaller...I think we are just chasing our tails.
This was a lousy weekend. I got a stomach bug on Saturday and was throwing up like a crazy person all morning long. I had to call mom around 7am and ask her to get up when Andrew arrived because I had already thrown up nearly a dozen times in 3 hours and there was no way I was going to get up there to take care of him. I didn't make it upstairs until after noon and even then I was of no use. Mom ended up canceling her golf outing becausee I wasn't safe to leave alone, once again. Fortunately, the throwing up stopped and I was able to start keeping things down by dinner time. I didn't know it, but if things hadn't improved by 7pm, mom was taking me into the ER anyway, so I perkedup just in time!
Fortunately, the bug seems to have passed me by now and I am feeling much better. I am having a lot of pain though in my abdomen and back. It was bad enough as it was, but last night, I was taking the trash out and I was having trouble getting it away from the wall in the garage. I gave it a yank and it came out quick and slammed into my side in the front. Now, that area hurts to the point that it makes me nauseated at times. My back is hurting a lot more too - right straight back like someone has shoved their arm right through me from front to back. I am so tired of the pain.
I did manage to get the groceries today though. I spent $100 on this month's food and hopefully that will hold us out for the most part. That leaves me $50 for the rest of the month, so it should be good. I got some pizza, chicken, turkey, salad, etc. I think I did pretty well. I am still trying to get the hang of shopping on a tighter budget and for 2 instead of 1.
Well, I need to go relax for a bit. My body hurts just sitting here typing, so I need a nap.
Sally
My day started with going to the wound care clinic and then to lunch and then to Meijer to do the grocery shopping. The wound care clinic was fine. We decided to continue with the same silver stuff for another week and see what happens. It seems to be doing fine for now - the wound isn't getting any smaller, but it isn't getting any bigger either. Honestly, I don't think it will ever get smaller...I think we are just chasing our tails.
This was a lousy weekend. I got a stomach bug on Saturday and was throwing up like a crazy person all morning long. I had to call mom around 7am and ask her to get up when Andrew arrived because I had already thrown up nearly a dozen times in 3 hours and there was no way I was going to get up there to take care of him. I didn't make it upstairs until after noon and even then I was of no use. Mom ended up canceling her golf outing becausee I wasn't safe to leave alone, once again. Fortunately, the throwing up stopped and I was able to start keeping things down by dinner time. I didn't know it, but if things hadn't improved by 7pm, mom was taking me into the ER anyway, so I perkedup just in time!
Fortunately, the bug seems to have passed me by now and I am feeling much better. I am having a lot of pain though in my abdomen and back. It was bad enough as it was, but last night, I was taking the trash out and I was having trouble getting it away from the wall in the garage. I gave it a yank and it came out quick and slammed into my side in the front. Now, that area hurts to the point that it makes me nauseated at times. My back is hurting a lot more too - right straight back like someone has shoved their arm right through me from front to back. I am so tired of the pain.
I did manage to get the groceries today though. I spent $100 on this month's food and hopefully that will hold us out for the most part. That leaves me $50 for the rest of the month, so it should be good. I got some pizza, chicken, turkey, salad, etc. I think I did pretty well. I am still trying to get the hang of shopping on a tighter budget and for 2 instead of 1.
Well, I need to go relax for a bit. My body hurts just sitting here typing, so I need a nap.
Sally
Friday, May 4, 2007
TGIF
Thank goodness it's Friday! I can honestly say that this week has been long and I am glad that it is at its end.
I had a really great day yesterday. I spent the day with Becky and Andrew. He and I played Candy Land and then the 3 of us tried to play Chutes and Ladders, but he had worn out his ability to concentrate. So, we will have to try that again later. It seems to me that after kicking my butt at CandyLand that he would have been more than ready to play another game, but fortunately, winning doesn't matter much to him yet - he just wanted to get to the party at the top of the game with Dora!
The funniest part of the day was probably when he wanted me to stay and watch Madagascar with him. So, I whispered to him that he should ask mommy if Aunt Sally could stay for dinner...he looks up and says "Hey mom, Aunt Sally needs food!" Ummm, not quite what I had in mind, but he did get the point across. We had yummy chicken marinated in terioyke on the grill - it was so good.
I have been working on laundry today - actually, I have gotten one load done and I need to go get another one going. The problem is that the clothes is downstairs and the washer is upstairs. I am in major pain today, probably a result of too busy a week and a few too many elbows to the belly yesterday (Andrew, unknowningly, elbows me when he is on my lap and is trying to get down). So, despite all my pain meds, I am in major pain (you know the kind where you sit here sweating and trying not to move because it hurts so much). So, I really need to bring another load of laundry up, but just climbing the stairs myself is hard today. I also need to get the kitchen cleaned.
Cleaning is becoming the bane of my exisitance. I feel really bad about it. I'm a messy person - I always have been and I just don't see that changing. It isn't that I don't want to be neat - I really do, but I just seem to have an inability to be neat. The problem is that it is driving mom nuts and I feel bad about it. I want so badly to clean for her and to be all that she wants of me. I really want to make her happy. The problem is that I hate cleaning. I don't know how the basement gets so messy - I'm never even down there. Actually, that is exactly the problem. I walk down there and toss stuff down and then come back upstairs and the crap just stays right where I put it and I never go back to it. So, I know that I need to get it cleaned up, but I can generally find ANYTHING else to do. I want to make her happy though - I want her to be proud of me and I want her not to be embarrassed to admit that I live with her and that I am her daughter. I love her and appreciate all that she has done for me, especially over the last couple years. It can't possibly be easy for her to go through all this and I realize this. It is extremely stressful having me here and knowing that at any moment I get sick and her life has to change all over again. I know that it is hard for her to give up her dreams of retiring and moving to Florida all because she has had to provide financially for me. I'm sure that she is less than excited about telling people that her grown daughter lives with her - even if there is a good reason. She is a wonderful mom and I couldn't ask for better. I need to do better by her.
So, I shall leave my blog for now and start cleaning and getting my laundry done. It's what I should do and so I shall.
Hope you all have a great day!
Sally
I had a really great day yesterday. I spent the day with Becky and Andrew. He and I played Candy Land and then the 3 of us tried to play Chutes and Ladders, but he had worn out his ability to concentrate. So, we will have to try that again later. It seems to me that after kicking my butt at CandyLand that he would have been more than ready to play another game, but fortunately, winning doesn't matter much to him yet - he just wanted to get to the party at the top of the game with Dora!
The funniest part of the day was probably when he wanted me to stay and watch Madagascar with him. So, I whispered to him that he should ask mommy if Aunt Sally could stay for dinner...he looks up and says "Hey mom, Aunt Sally needs food!" Ummm, not quite what I had in mind, but he did get the point across. We had yummy chicken marinated in terioyke on the grill - it was so good.
I have been working on laundry today - actually, I have gotten one load done and I need to go get another one going. The problem is that the clothes is downstairs and the washer is upstairs. I am in major pain today, probably a result of too busy a week and a few too many elbows to the belly yesterday (Andrew, unknowningly, elbows me when he is on my lap and is trying to get down). So, despite all my pain meds, I am in major pain (you know the kind where you sit here sweating and trying not to move because it hurts so much). So, I really need to bring another load of laundry up, but just climbing the stairs myself is hard today. I also need to get the kitchen cleaned.
Cleaning is becoming the bane of my exisitance. I feel really bad about it. I'm a messy person - I always have been and I just don't see that changing. It isn't that I don't want to be neat - I really do, but I just seem to have an inability to be neat. The problem is that it is driving mom nuts and I feel bad about it. I want so badly to clean for her and to be all that she wants of me. I really want to make her happy. The problem is that I hate cleaning. I don't know how the basement gets so messy - I'm never even down there. Actually, that is exactly the problem. I walk down there and toss stuff down and then come back upstairs and the crap just stays right where I put it and I never go back to it. So, I know that I need to get it cleaned up, but I can generally find ANYTHING else to do. I want to make her happy though - I want her to be proud of me and I want her not to be embarrassed to admit that I live with her and that I am her daughter. I love her and appreciate all that she has done for me, especially over the last couple years. It can't possibly be easy for her to go through all this and I realize this. It is extremely stressful having me here and knowing that at any moment I get sick and her life has to change all over again. I know that it is hard for her to give up her dreams of retiring and moving to Florida all because she has had to provide financially for me. I'm sure that she is less than excited about telling people that her grown daughter lives with her - even if there is a good reason. She is a wonderful mom and I couldn't ask for better. I need to do better by her.
So, I shall leave my blog for now and start cleaning and getting my laundry done. It's what I should do and so I shall.
Hope you all have a great day!
Sally
Tuesday, May 1, 2007
They didn't want me...
I had jury duty today and they didn't want me. I REALLY wanted to be selected. It was a medical malpractice case of a woman who died during the birth of twins (she died in between deliveries). I suspect that my medical background and history of being a long-term patient in the hospital that was involved was the reason that they didn't even call me to the jury box. The trial is expected to last through the end of next week, so I was inspired not only by my desire to fulfill my civic duty, but also by the $40 a day for 9 days...hello??? I could really use that $300!!!
Anyway, I am worn out. The last couple days have been busy. I met with the bankruptcy attorney yesterday and found out that it will be $990 to file. So, hopefully I can get that taken care of next week. I have some paperwork to get and I also have to find the other $400...
After the attorney, I met up with Carol and we went to Battle Creek to the mall for a moment to find some stuff for her and then we went over to Alice's. We went to the little pub again by her house and had a great time chatting and eating. They have great waffle fries there...I don't know what they put on them, but I love them!
Today, I was at the courthouse all day...we didn't get dismissed until almost 3pm, so I guess that I will get paid for a full day of jury duty - hey, it's something...
Tonight, I am in some incredible pain. I think it is a result of overdoing it the last couple days. For some reason, sitting in very stiff chairs really aggravates my abdomen. So, sitting there on the wooden benches all day in the courtroom have set things in motion tonight. Andrew apparently requested that I pick him up tomorrow from daycare, but I asked mom to do it (it's her usual night to pick him up) because I really tink that I need to just come home tomorrow and relax. I have an appointment in the wound care clinic at 9:30 and then I am going to come home and chill. We shall see what they have to offer at the wound care clinic. I am going to not shower in the morning (gross, I know) so that I can avoid changing my dressing before I go. It seems like everytime I go in there, I have just changed the dressing and they remark that there isn't much drainage and it doesn't smell when in fact, it really does drain quite a bit and stinks at times. So, my hope is that by going with the nasty dressing still on there they will see what I see everyday. Maybe that will give them a better idea of how to treat this thing.
Anyway, I am in pain and a bit miserable tonight, so I am headed to bed. I hope that you all have a great day and I will pop back here soon...
Sally
Anyway, I am worn out. The last couple days have been busy. I met with the bankruptcy attorney yesterday and found out that it will be $990 to file. So, hopefully I can get that taken care of next week. I have some paperwork to get and I also have to find the other $400...
After the attorney, I met up with Carol and we went to Battle Creek to the mall for a moment to find some stuff for her and then we went over to Alice's. We went to the little pub again by her house and had a great time chatting and eating. They have great waffle fries there...I don't know what they put on them, but I love them!
Today, I was at the courthouse all day...we didn't get dismissed until almost 3pm, so I guess that I will get paid for a full day of jury duty - hey, it's something...
Tonight, I am in some incredible pain. I think it is a result of overdoing it the last couple days. For some reason, sitting in very stiff chairs really aggravates my abdomen. So, sitting there on the wooden benches all day in the courtroom have set things in motion tonight. Andrew apparently requested that I pick him up tomorrow from daycare, but I asked mom to do it (it's her usual night to pick him up) because I really tink that I need to just come home tomorrow and relax. I have an appointment in the wound care clinic at 9:30 and then I am going to come home and chill. We shall see what they have to offer at the wound care clinic. I am going to not shower in the morning (gross, I know) so that I can avoid changing my dressing before I go. It seems like everytime I go in there, I have just changed the dressing and they remark that there isn't much drainage and it doesn't smell when in fact, it really does drain quite a bit and stinks at times. So, my hope is that by going with the nasty dressing still on there they will see what I see everyday. Maybe that will give them a better idea of how to treat this thing.
Anyway, I am in pain and a bit miserable tonight, so I am headed to bed. I hope that you all have a great day and I will pop back here soon...
Sally
Saturday, April 28, 2007
Happy Saturday!
Hello all! Andrew and I are just here hanging out watching Blue's Clues. It is a little too chilly today to go outside and play "soccer ball" like he really wants to. It was only 54 degrees and very windy when he got here this morning, so we have been watching movies and cartoons instead. It's okay to have a lazy Saturday every once in a while!
I am feeling very lazy today. It isn't as bad as yesterday, but I do think it is a side effect of the infusion. I just wanted to sleep Thursday evening and then I went to bed early again last night. My plan for tonight is to watch a couple movies and clean up some of the basement. Then, I need to sort through bills for my meeting with the attorney on Monday. So, if I can get the main part of the living room cleaned up tonight, then I can sort bills on the coffee table.
Tomorrow, mom and I are planning a jammie day. We don't have anywhere that we need to go and so we are just going to hang out at home, watch some movies and I am going to grill steaks out on the deck. Hopefully, it will be a nice enough day that we can eat outside and enjoy the nice weather. I think it is supposed to be warm, but I don't know how windy it will be - today is very windy.
I was logging my blood sugars today in my log book and noticed that I have not had good control recently. It seems like I am going through an awful lot of insulin and I am just not getting very good numbers. I have been over 200 a majority of the last 2 weeks. I don't know why things have been so out of control. I know that I haven't been the best in terms of diet, but I haven't been all that bad that I should be seeing these high numbers.
I don't know if the abdominal pain is a result of the high blood sugars or the high blood sugars are a result of the abdominal pain, but both are not so good right now. I am getting progressively more and more uncomfortable again. It was so nice having those nice days last week. The pain was actually tolerable and I was able to have some fun without having to constantly think about it. Now, I am back to having to limit what I am doing. I had a really hard time doing the little shopping mom and I did last night. I mean, all we did was wander around WalMart for about 20 minutes while waiting for my prescription and then over to MC Sports to exchange her shoes, but while waiting in line at MC, I felt like I was about to pass out from the discomfort. This is not acceptable.
Anyway, I guess that I should get back to Andrew. He is fascinated by whatever is on TV. It's about time to get the toys cleaned up because Matt will be here in just a little bit. Andrew has been so good today. I love having him over - he is so much fun to play with. I hope that as he gets bigger, he continues to enjoy coming over to see me. I worry that I won't be the fun aunt that I have always wanted to be. I don't want to be the aunt that is no fun because she is always sick and I definitely don't want to be the one he feels sorry for. I want to be fun Aunt Sally...
I am feeling very lazy today. It isn't as bad as yesterday, but I do think it is a side effect of the infusion. I just wanted to sleep Thursday evening and then I went to bed early again last night. My plan for tonight is to watch a couple movies and clean up some of the basement. Then, I need to sort through bills for my meeting with the attorney on Monday. So, if I can get the main part of the living room cleaned up tonight, then I can sort bills on the coffee table.
Tomorrow, mom and I are planning a jammie day. We don't have anywhere that we need to go and so we are just going to hang out at home, watch some movies and I am going to grill steaks out on the deck. Hopefully, it will be a nice enough day that we can eat outside and enjoy the nice weather. I think it is supposed to be warm, but I don't know how windy it will be - today is very windy.
I was logging my blood sugars today in my log book and noticed that I have not had good control recently. It seems like I am going through an awful lot of insulin and I am just not getting very good numbers. I have been over 200 a majority of the last 2 weeks. I don't know why things have been so out of control. I know that I haven't been the best in terms of diet, but I haven't been all that bad that I should be seeing these high numbers.
I don't know if the abdominal pain is a result of the high blood sugars or the high blood sugars are a result of the abdominal pain, but both are not so good right now. I am getting progressively more and more uncomfortable again. It was so nice having those nice days last week. The pain was actually tolerable and I was able to have some fun without having to constantly think about it. Now, I am back to having to limit what I am doing. I had a really hard time doing the little shopping mom and I did last night. I mean, all we did was wander around WalMart for about 20 minutes while waiting for my prescription and then over to MC Sports to exchange her shoes, but while waiting in line at MC, I felt like I was about to pass out from the discomfort. This is not acceptable.
Anyway, I guess that I should get back to Andrew. He is fascinated by whatever is on TV. It's about time to get the toys cleaned up because Matt will be here in just a little bit. Andrew has been so good today. I love having him over - he is so much fun to play with. I hope that as he gets bigger, he continues to enjoy coming over to see me. I worry that I won't be the fun aunt that I have always wanted to be. I don't want to be the aunt that is no fun because she is always sick and I definitely don't want to be the one he feels sorry for. I want to be fun Aunt Sally...
Thursday, April 26, 2007
It's Infusion Day!
Today was my third IVIG infusion and the first time we were able to do it as an outpatient. It has been scheduled outpatient the other 2 times, but I always ended up back in the hospital with an infection. For the first time, I am actually on the outside world and was able to do it as scheduled! I have been out of the hospital for nearly one full month! It's amazing! They kept asking me how I deal with the infusions, but I was of little help since I have always just gone back to my hospital room and stared at the walls. So, this was a whole new experience. I do have a headache and I feel rather blah and tired, but it isn't so bad. I know other people who have the infusions as well and they also have problems with headaches after the infusion. It seems like it gets better the more hydrated you are, so I will just have to keep drinking and stay hydrated.
Otherwise, I am doing okay. My abdomen has been getting more and more sore this week, unfortunately. I did have a few really good days though, so I can definitely be thankful for that.
Mom's birthday was Tuesday and we had a nice family dinner. We continued on our trend of unusual desserts and had apple pie instead of cake. We have decided that it is silly to keep having cake for birthdays when none of us are all that crazy about cake as it is, so we are trying different things. We had a big cookie for Andrew's birthday. We did have a banana cake for my birthday, but that was my choice - I didn't get a banana cake last year and really wanted one this year. Anyway, we had a really nice dinner and mom was totally surprised by her gift - we got her Crocks (the clog shoes). I know this isn't really all that exciting a gift, but she was surprised by it and said she really liked them, which is all that matters! We just wanted to make her happy! She said she really enjoyed her birthday. We stopped by her office earlier in the day and brought her flowers and balloons. She loved the surprise and was overjoyed to see Andrew there - he brought her a little African violet and a balloon on a stick and said "Happy Birthday Grandma!" She loves it when he stops by the office and she can show him off to all her coworkers.
I went to the wound care clinic yesterday and they put a new dressing on my wound - it looks like a mesh screen like you have on a window. They are being really good about the fact that I can't afford all the fancy dressing supplies. This mesh thing is to stay on for 7 days and then I am going back next week and they said they would change it there if it is working. The hope is that it will be less adherent to the wound, especially the spot where the abdominal wall ruptured last month. They are hoping that area will grow kind of a callous over it so that we don't have to worry about the rupture causing anything to leak out of it. I really don't want any leakage because then I have to call the surgeon and have it repaired...something I don't have any interest in...more surgery. So, hopefully this mesh will work and I won't have to worry about it. The wound care clinic has been great about getting my COBRA paid for by the hospital as well. I took the next statement in today to the financial services department of the hospital. Apparently, they are planning to pay for the insurance for 3-4 months while I wait on the medicaid.
Speaking of medicaid, I got a call from the case worker on Tuesday. He left a message here saying that the hold up at this point is that he hasn't gotten the records from one of the hospitals and that he was surprised by that because they are usually really fast responding to the request for records. Of course, my thought was...if they usually respond faster, wouldn't it seem appropriate to call and find out if they got the request??? It's been 6 weeks for goodness sakes! So, I figure that I will give it until next week and then call him again to find out if he has gotten it yet so that I don't fall to the bottom of his pile again, which is what I suspect is what has happened this time. He said that once he has the records, it will be another 2-3 weeks while it goes to the committee to be reviewed. This is such a frustrating process because it is so slow and there seems to be nothing I can do to speed it up!!! I want to light a fire under somebody's butt and get this moving, but I don't know where to light that fire!
Anyway, I think that is about all that has happened here this week. I have nothing planned for tomorrow, so hopefully I can sleep in a little bit and then I would like to work on cleaning up downstairs a bit. I also need to get my bills and stuff all together so that I am prepared for my appointment with the lawyer on Monday regarding my bankruptcy. I have so many duplicate bills that I need to get that all sorted and figure out how much I actually owe and to whom so we can get that moving. I would like to stop the calls and letters from all the creditors. The good news is that the girl who answered the phone at the lawyers office said that it should be on the lower end of things with regards to cost because it is all medical bills - no unsecured debt like credit cards or the like. It's amazing how much it costs just to file bankruptcy! You have to be wealthy to declare you are poor!
Oh well, hope you all have a great day!!!
Sally
Otherwise, I am doing okay. My abdomen has been getting more and more sore this week, unfortunately. I did have a few really good days though, so I can definitely be thankful for that.
Mom's birthday was Tuesday and we had a nice family dinner. We continued on our trend of unusual desserts and had apple pie instead of cake. We have decided that it is silly to keep having cake for birthdays when none of us are all that crazy about cake as it is, so we are trying different things. We had a big cookie for Andrew's birthday. We did have a banana cake for my birthday, but that was my choice - I didn't get a banana cake last year and really wanted one this year. Anyway, we had a really nice dinner and mom was totally surprised by her gift - we got her Crocks (the clog shoes). I know this isn't really all that exciting a gift, but she was surprised by it and said she really liked them, which is all that matters! We just wanted to make her happy! She said she really enjoyed her birthday. We stopped by her office earlier in the day and brought her flowers and balloons. She loved the surprise and was overjoyed to see Andrew there - he brought her a little African violet and a balloon on a stick and said "Happy Birthday Grandma!" She loves it when he stops by the office and she can show him off to all her coworkers.
I went to the wound care clinic yesterday and they put a new dressing on my wound - it looks like a mesh screen like you have on a window. They are being really good about the fact that I can't afford all the fancy dressing supplies. This mesh thing is to stay on for 7 days and then I am going back next week and they said they would change it there if it is working. The hope is that it will be less adherent to the wound, especially the spot where the abdominal wall ruptured last month. They are hoping that area will grow kind of a callous over it so that we don't have to worry about the rupture causing anything to leak out of it. I really don't want any leakage because then I have to call the surgeon and have it repaired...something I don't have any interest in...more surgery. So, hopefully this mesh will work and I won't have to worry about it. The wound care clinic has been great about getting my COBRA paid for by the hospital as well. I took the next statement in today to the financial services department of the hospital. Apparently, they are planning to pay for the insurance for 3-4 months while I wait on the medicaid.
Speaking of medicaid, I got a call from the case worker on Tuesday. He left a message here saying that the hold up at this point is that he hasn't gotten the records from one of the hospitals and that he was surprised by that because they are usually really fast responding to the request for records. Of course, my thought was...if they usually respond faster, wouldn't it seem appropriate to call and find out if they got the request??? It's been 6 weeks for goodness sakes! So, I figure that I will give it until next week and then call him again to find out if he has gotten it yet so that I don't fall to the bottom of his pile again, which is what I suspect is what has happened this time. He said that once he has the records, it will be another 2-3 weeks while it goes to the committee to be reviewed. This is such a frustrating process because it is so slow and there seems to be nothing I can do to speed it up!!! I want to light a fire under somebody's butt and get this moving, but I don't know where to light that fire!
Anyway, I think that is about all that has happened here this week. I have nothing planned for tomorrow, so hopefully I can sleep in a little bit and then I would like to work on cleaning up downstairs a bit. I also need to get my bills and stuff all together so that I am prepared for my appointment with the lawyer on Monday regarding my bankruptcy. I have so many duplicate bills that I need to get that all sorted and figure out how much I actually owe and to whom so we can get that moving. I would like to stop the calls and letters from all the creditors. The good news is that the girl who answered the phone at the lawyers office said that it should be on the lower end of things with regards to cost because it is all medical bills - no unsecured debt like credit cards or the like. It's amazing how much it costs just to file bankruptcy! You have to be wealthy to declare you are poor!
Oh well, hope you all have a great day!!!
Sally
Monday, April 23, 2007
'Tis Monday...
Another week has arrived and it seems like a fairly busy week. Mom's birthday is tomorrow (Happy Birthday Mom!) and so we are having family dinner tomorrow. I'm fixing cheesy chicken, fresh beans and we are having a surprise for desert (it's one of mom's favorites). I'm going to put the cheesy chicken in the crockpot in the morning so I can hopefully enjoy dinner tomorrow night. My abdominal pain has returned and is making standing really difficult right now, so my hope is that by doing the hard part of dinner in the morning, I will be okay for eating by dinnertime.
Becky, Andrew and I are going to breakfast in the morning and then going to do our normal Tuesday hangout. I need to run a couple errands tomorrow and then it will be back to home to finish dinner.
I also have a wound care appointment and my IVIG infusion is this week, so that should keep me busy.
I'm not really feeling very well, as I eluded to above. All day long my abdomen has felt like it is very bloated and like my stomach area is trying to take over my entire body. I did change my bed tonight (the sheets were NASTY...in my opinion at least) and after that I felt like someone was trying to drive a tree trunk right through me from front to back - wow, that is not a comfortable feeling.
So, now I am going to go to bed and see if I can get rid of the feeling for a while. I was having a hard time staying awake upstairs, but it seems that the moment I crawl into bed, my eyes are wide open and I can't sleep a wink until after 4 or 5. Since I need to be up by about 8:30, that isn't a good plan for today!
Oh, on the medicaid front, I called my case worker AGAIN today, but got his voice mail again with no response...this is getting annoying.
Sally
Becky, Andrew and I are going to breakfast in the morning and then going to do our normal Tuesday hangout. I need to run a couple errands tomorrow and then it will be back to home to finish dinner.
I also have a wound care appointment and my IVIG infusion is this week, so that should keep me busy.
I'm not really feeling very well, as I eluded to above. All day long my abdomen has felt like it is very bloated and like my stomach area is trying to take over my entire body. I did change my bed tonight (the sheets were NASTY...in my opinion at least) and after that I felt like someone was trying to drive a tree trunk right through me from front to back - wow, that is not a comfortable feeling.
So, now I am going to go to bed and see if I can get rid of the feeling for a while. I was having a hard time staying awake upstairs, but it seems that the moment I crawl into bed, my eyes are wide open and I can't sleep a wink until after 4 or 5. Since I need to be up by about 8:30, that isn't a good plan for today!
Oh, on the medicaid front, I called my case worker AGAIN today, but got his voice mail again with no response...this is getting annoying.
Sally
Saturday, April 21, 2007
A spring evening...
I had a lovely time this evening sitting out on the deck reading my book. You know, I realized tonight that although I spend probably 90% of my week alone, I rarely spend time enjoying my aloneness. As I sat outside tonight, I was able to appreciate the sounds of nature around me, the beauty of the sun setting and the joy of just being alone with myself. I need to remember to do that more often because it really is nice.
Tomorrow is Saturday, which means it is Andrew day! My plan is in the morning to go out to the deck and have him play outside for a while rather than just sitting and watching TV...we shall see though if it is warm enough or dry enough first thing in the day. In the afternoon, I am planning to make cookies with him. We are going to make oatmeal butterscotch cookies (yes, we planned to do this last week, but it didn't happen), which are my favorite. So, we will make them and freeze most of them so Aunt Sally doesn't make a fool of herself this week eating cookies! he he he.
I did get a lot done today, though I was a little slower and sore today than I was yesterday. I did manage to get my prescription filled (after an hour and a half on the phone with the insurance company trying to get the COBRA straightened out) and got my packages mailed out (yes, Rebecca and Linda can expect boxes this week!!!) and then after a little time to relax, I cleaned the kitchen before retiring to the deck to enjoy the evening.
Otherwise, the day was pretty much the same as any Friday. I got several appointments scheduled and mailed out more social security paperwork. Mom went out for her first golf outing of the Spring. She had a great time and seems very excited about the upcoming season. She has joined a second league and is really looking forward to meeting new people and playing a different course. I am glad that she has been able to find something that she enjoys so much and people she enjoys playing with. I am definitely not going to be her golf partner, so it's a good thing she has found friends to play with!
Well, it's off to bed for me...gotta get some rest before my little noodle arrives in the morning!
Have a great night!
Sally
Tomorrow is Saturday, which means it is Andrew day! My plan is in the morning to go out to the deck and have him play outside for a while rather than just sitting and watching TV...we shall see though if it is warm enough or dry enough first thing in the day. In the afternoon, I am planning to make cookies with him. We are going to make oatmeal butterscotch cookies (yes, we planned to do this last week, but it didn't happen), which are my favorite. So, we will make them and freeze most of them so Aunt Sally doesn't make a fool of herself this week eating cookies! he he he.
I did get a lot done today, though I was a little slower and sore today than I was yesterday. I did manage to get my prescription filled (after an hour and a half on the phone with the insurance company trying to get the COBRA straightened out) and got my packages mailed out (yes, Rebecca and Linda can expect boxes this week!!!) and then after a little time to relax, I cleaned the kitchen before retiring to the deck to enjoy the evening.
Otherwise, the day was pretty much the same as any Friday. I got several appointments scheduled and mailed out more social security paperwork. Mom went out for her first golf outing of the Spring. She had a great time and seems very excited about the upcoming season. She has joined a second league and is really looking forward to meeting new people and playing a different course. I am glad that she has been able to find something that she enjoys so much and people she enjoys playing with. I am definitely not going to be her golf partner, so it's a good thing she has found friends to play with!
Well, it's off to bed for me...gotta get some rest before my little noodle arrives in the morning!
Have a great night!
Sally
Thursday, April 19, 2007
What a GREAT day!
I had a great day! I felt good and got to go out with Becky and Andrew. I got to their house, went searching for Andrew, swung him around and told him I was feeling great and was ready to play! His response? "YAY!" We went to lunch and did some shopping. My mom's birthday is next week as well as a friend of Andrew's, so we had to find some birthday gifts. We got home and Becky and I watched "Rumor Has It" while Andrew took a nap. After his nap, we felt the need to tickle and torture him into laughing and giggling...not like that is a hard task! When I got home, I finally got the pictures for Christmas for my best friend framed and wrapped as well as getting it all in a box and put it in my trunk so I can mail it out tomorrow. That leaves me with only 2 more Christmas gifts to get out! Maybe I can get another one done tomorrow before I go to the post office. That last one is a toughie because of the framing...I don't know how to do it right and so I need mom's help on that one!
In the world of strange news, there was a "specific threat" made to KVCC (the community college across the street) this morning and they evacuated and closed the campus until Sunday. I didn't know anything about it this morning until I started getting phone calls from friends inquiring if I was okay and needed someplace to stay...boy, was I confused as to what was going on. Fortunately, it turns out that it was just a former student who had made comments on a message board about how he was proud of what that kid did at Virginia Tech did and that he would have done the same. I am guessing they had more than that to go on, but I can see why they would react so efficiently as a result of the what happened earlier this week at VT. They have to do what is best for the safety of the student body and right now, everyone is on edge.
So, I am very happy because I had such a nice day. I can make it through weeks of bad days if I can just have a good day every once in a while. It has been so long that I felt like I was drowning, but today, I can see the light. I know that the likelihood that tomorrow will be quite uncomfortable and miserable because I did a lot today and it seems to be the way things go, but I don't care - I had a good day and I am happy...nothing else matters right now.
In case you need something to make you smile, here is an adorable picture of Andrew...he put himself in this predicament while at Easter in Kawkawlin with his grandparents...what a ham!
I hope that you all had a great day - everyone deserves to have a great day at least once in a while...it makes all the rest of life tolerable. It helps you to see all the good that life has to offer. It makes you appreciate all that you have - family and friends. I have a wonderful family and I need to remember that and tell them more often how much I appreciate them and love them.
Sally
Tuesday, April 17, 2007
A sad state of affairs
It is a sad day when the news is consumed by the acts of one person. I will never understand why it is that a person feels that they should take out their frustration and anger on a group of unrelated individuals. This young man that felt the need to kill his fellow students at VA Tech must have had some rationale, but sadly, I think we will never understand it and as a result, there are a lot of people who have lost their innocent children for no explainable purpose. My deepest sympathies to those families and to the parents of this young man who are likely as at great a loss for how to cope with this as any of the others.
On a brighter note, Sue and Jim came home Sunday night and surprised us by joining the family dinner at Matt and Becky's. We had a wonderful night of laughing and eating. It is so nice to have them back home again. We miss them while they are gone, whether they believe that or not! It was actually quite ironic because Saturday, Andrew must have told me 10-12 times that he wanted to see "Uncle Jim and Aunt Sue" and I had to keep telling him that they would be home sometime this week and maybe we would see them next weekend. Little did I know that it would only be 24 hours!
As for me, I am still hanging in here. I haven't had the best few days. My stomach has been going crazy in the evening and I haven't been able to keep any food in after about 5pm. I seem to do okay at lunch time, but by dinner, all bets are off. The pain is still out of control as well. I wish that if something was going to happen that it just would so I could be done with it for a couple weeks!
Well, I had best be off to bed. I am having lunch with Sue tomorrow and have a couple errands to run. Hope you all had a great day!
Sally
On a brighter note, Sue and Jim came home Sunday night and surprised us by joining the family dinner at Matt and Becky's. We had a wonderful night of laughing and eating. It is so nice to have them back home again. We miss them while they are gone, whether they believe that or not! It was actually quite ironic because Saturday, Andrew must have told me 10-12 times that he wanted to see "Uncle Jim and Aunt Sue" and I had to keep telling him that they would be home sometime this week and maybe we would see them next weekend. Little did I know that it would only be 24 hours!
As for me, I am still hanging in here. I haven't had the best few days. My stomach has been going crazy in the evening and I haven't been able to keep any food in after about 5pm. I seem to do okay at lunch time, but by dinner, all bets are off. The pain is still out of control as well. I wish that if something was going to happen that it just would so I could be done with it for a couple weeks!
Well, I had best be off to bed. I am having lunch with Sue tomorrow and have a couple errands to run. Hope you all had a great day!
Sally
Saturday, April 14, 2007
Saturday night...
So, it is Saturday night and I am happy to say that I made it through another day. We had a wonderful time with Andrew today. He was in such a good little mood and was just having fun playing and talking all day long. We didn't end up making cookies because he needed a nap this afternoon due to the fact that he got up bright and early this morning. He is anxiously waiting for Sue and Jim (my aunt and uncle) to come home from Florida this week though and I told him we could bake cookies next week and make sure we take some to them.
I'm very tired tonight despite my afternoon nap. It seems that this darned pancreas takes an awful lot of energy out of me. I was feeling pretty good most the day, but this evening has taken a bit of a turn. I am in more pain and quite nauseated tonight...not to mention the cold sweats which have left me looking like I just took a shower.
I don't have much planned for tomorrow. I think we are going to have dinner at Matt and Becky's tomorrow night because it has been a while since we had a family dinner. I suggested pizza - something easy and cheap, but Becky thought Matt might want to cook.
I am just hoping to be around for dinner tomorrow...I have that sinking feeling that something is about the happen again. The nausea, pain, fatigue, sweats and general sense of uneasiness are generally not a good sign...it has been almost 3 weeks since I was last discharged from the hospital, so I suppose I should be thankful that we are starting to put a little more time in between admissions...
Hope you all have a great day. I am headed off to bed!
Sally
I'm very tired tonight despite my afternoon nap. It seems that this darned pancreas takes an awful lot of energy out of me. I was feeling pretty good most the day, but this evening has taken a bit of a turn. I am in more pain and quite nauseated tonight...not to mention the cold sweats which have left me looking like I just took a shower.
I don't have much planned for tomorrow. I think we are going to have dinner at Matt and Becky's tomorrow night because it has been a while since we had a family dinner. I suggested pizza - something easy and cheap, but Becky thought Matt might want to cook.
I am just hoping to be around for dinner tomorrow...I have that sinking feeling that something is about the happen again. The nausea, pain, fatigue, sweats and general sense of uneasiness are generally not a good sign...it has been almost 3 weeks since I was last discharged from the hospital, so I suppose I should be thankful that we are starting to put a little more time in between admissions...
Hope you all have a great day. I am headed off to bed!
Sally
Today was a little bit better...
So, today was not as bad as yesterday. I don't know if it is because I was consistently taking extra pain meds for the last day or if it is actually better. At this point, I really don't care what the reason is though! The pain is still worse than usual and I don't understand why, but at least today I can move around a little more comfortably. It still just hurts so much and I hate it.
I was getting very frustrated today because I couldn't get a hold of anyone regarding my old insurance coverage or medicaid. Everyone was apparently out of the office and won't be back until Monday. Well, my problem was that because I have been taking more Dilaudid, I was about to run out. So, I was looking at a very long weekend waiting for pain meds. Then, I decided to call Wal-Mart to see how much it would be to pay for the prescription with cash. Mind you, after the experience with the enzymes being $1200 for the month, I didn't hold out much faith; however, I about jumped out of my chair because they said - $28.32. I said - you mean 28 dollars??? So, mom and I went over there tonight and now I am hopefully going to be a little more comfortable this weekend than initially expected.
I have gotten all the stuff together now to send off for the free long-acting pain meds. I just need to get a signature from the doctor on the application. Hopefully, they will approve that and send it out quickly. I even got the money order for it tonight (you have to pay $5 shipping). So, that should go out Tuesday and that will be all set...
Mom and I had a nice evening. We went to Texas Roadhouse for dinner. That is quickly becoming one of my favorite places to go. They have amazing ribs - they fall off the bone and you don't even get messy! Even their house salad is delicious - it's ice cold and has lots of egg, tomatos, croutons, etc. The only problem is that you have to go so freaking early because they get so busy. We went at about 5:15 and had to wait about 20 minutes...by the time we left there at around 6:45, they were swamped. Becky and Matt tried to go a few weeks ago and were told they would have a 70-80 minute wait! CRAZY! We did see tonight though that they have call ahead seating, so we are thinking that on a Tuesday night after mom is done with bowling season we will go as a family.
Speaking of family, Andrew will be here tomorrow for his usual Saturday with Aunt Sally and Grandma. The plan, as of now, is to bake cookies. I got all the stuff to make my famous oatmeal butterscotch cookies, but I am going to try using Splenda in place of the white sugar. I am still going to use regular brown sugar because I thought it might be good to break us in gently to the idea of Splenda instead of regular sugar. They do have a Splenda brown sugar and if this tastes okay, I will probably try using that next time as well. Mom has a hair appointment at 1pm, so it will depend on if I have enough energy to watch him and bake cookies at the same time. We shall see what tomorrow has in store.
I have been cross-stitching like a crazy person again lately. I have done 6 bookmarks this week. I am doing them so I can give them to caregivers in the hospital who have been exceptionally kind to me. I like to have something on hand that is done already. I plan to do a bunch more, but it has worn a sore spot on my finger, so I had to switch o a different project for a while. I am doing some of these really funny pictures with this woman that reminds me of Maxine from the Hallmark pictures for my bathroom. She is brightly colored and has funny sayings...the one I am doing now says "Go braless...it will pull all the wrinkles out of your face!" They are just crazy funny and will look great in my bathroom.
My other project for the weekend is to get a bunch of stuff framed and boxed up so I can send it out next week. I still have Christmas presents sitting here for people because I fell behind and just haven't caught up yet! By the time I send them, it will be Christmas again!!! Speaking of Christmas again, I should actually start trying to figure out what pictures I am going to do for next year as it does take me a long time to get them done!
Okay, I am going to head off to bed. Andrew will be here in 9 hours and goodness knows I have to lay in bed not sleeping for at least the next 6!
I hope you all had a great day.
Sally
I was getting very frustrated today because I couldn't get a hold of anyone regarding my old insurance coverage or medicaid. Everyone was apparently out of the office and won't be back until Monday. Well, my problem was that because I have been taking more Dilaudid, I was about to run out. So, I was looking at a very long weekend waiting for pain meds. Then, I decided to call Wal-Mart to see how much it would be to pay for the prescription with cash. Mind you, after the experience with the enzymes being $1200 for the month, I didn't hold out much faith; however, I about jumped out of my chair because they said - $28.32. I said - you mean 28 dollars??? So, mom and I went over there tonight and now I am hopefully going to be a little more comfortable this weekend than initially expected.
I have gotten all the stuff together now to send off for the free long-acting pain meds. I just need to get a signature from the doctor on the application. Hopefully, they will approve that and send it out quickly. I even got the money order for it tonight (you have to pay $5 shipping). So, that should go out Tuesday and that will be all set...
Mom and I had a nice evening. We went to Texas Roadhouse for dinner. That is quickly becoming one of my favorite places to go. They have amazing ribs - they fall off the bone and you don't even get messy! Even their house salad is delicious - it's ice cold and has lots of egg, tomatos, croutons, etc. The only problem is that you have to go so freaking early because they get so busy. We went at about 5:15 and had to wait about 20 minutes...by the time we left there at around 6:45, they were swamped. Becky and Matt tried to go a few weeks ago and were told they would have a 70-80 minute wait! CRAZY! We did see tonight though that they have call ahead seating, so we are thinking that on a Tuesday night after mom is done with bowling season we will go as a family.
Speaking of family, Andrew will be here tomorrow for his usual Saturday with Aunt Sally and Grandma. The plan, as of now, is to bake cookies. I got all the stuff to make my famous oatmeal butterscotch cookies, but I am going to try using Splenda in place of the white sugar. I am still going to use regular brown sugar because I thought it might be good to break us in gently to the idea of Splenda instead of regular sugar. They do have a Splenda brown sugar and if this tastes okay, I will probably try using that next time as well. Mom has a hair appointment at 1pm, so it will depend on if I have enough energy to watch him and bake cookies at the same time. We shall see what tomorrow has in store.
I have been cross-stitching like a crazy person again lately. I have done 6 bookmarks this week. I am doing them so I can give them to caregivers in the hospital who have been exceptionally kind to me. I like to have something on hand that is done already. I plan to do a bunch more, but it has worn a sore spot on my finger, so I had to switch o a different project for a while. I am doing some of these really funny pictures with this woman that reminds me of Maxine from the Hallmark pictures for my bathroom. She is brightly colored and has funny sayings...the one I am doing now says "Go braless...it will pull all the wrinkles out of your face!" They are just crazy funny and will look great in my bathroom.
My other project for the weekend is to get a bunch of stuff framed and boxed up so I can send it out next week. I still have Christmas presents sitting here for people because I fell behind and just haven't caught up yet! By the time I send them, it will be Christmas again!!! Speaking of Christmas again, I should actually start trying to figure out what pictures I am going to do for next year as it does take me a long time to get them done!
Okay, I am going to head off to bed. Andrew will be here in 9 hours and goodness knows I have to lay in bed not sleeping for at least the next 6!
I hope you all had a great day.
Sally
Thursday, April 12, 2007
An honest look at my day...
It was suggested that I look at this blog as a journal of sorts...a place to share my personal feelings and what goes on in this crazy head of mine that other people can see and therefore have a better understanding of my world. That is a lot harder to do than it seems on the surface.
I've never wanted to be looked at as a complainer or a whiner, especially since getting sick. I try to find the positive side of things and keep a cheerful demeaner, which I think I am pretty successful at. There are days though that it is much more difficult than others. This has been one of those days.
I was awake several times last night after getting an early start to sleep, which is unusual lately. When I finally woke for the last time at about 7:30 this morning, I felt like you do when you have laid in bed too long and your entire body aches. The nice thing about that feeling is that it goes away after you start moving around a bit. The bad thing about the feeling this morning was that it didn't go away...it actually got worse the more I moved around. So, I took my morning meds and some extra pain meds and came upstairs to sit in the chair and relax before making breakfast because at that time, I was afraid I would throw up if I even smelled food. I sat there in some pretty intense pain for several hours before I finally decided to try a sandwich (yes, it was lunch time by this point). Fortunately, despite a few trips to the bathroom, the sandwich stayed down. Unfortunately, the pain just continued. I probably should have called the doctor's office, but I get so tired of hearing about how no one knows what more they can do for me. So, I just kept taking the extra pain meds as scheduled and made it through the day.
Now I sit here at 11:20pm and am wondering what I am going to do. The pain is better than it was first thing this morning, but I suspect that has more to do with all the pain meds than the pain actually being any better. If it is still this bad in the morning, I will call the doctor and see what they have to say. I suspect the answer will be that if the pain gets to the point that I can't tolerate it anymore, I am to go to the hospital. Let's face it, I really don't want to do that though.
I get so frustrated. It's so lonely feeling like this. I know that mom and Becky try to be as supportive as they can be, but there is no way that they can really understand what it is like to be in this situation. It seems like there are more days than not lately that I wonder why I was left here on this earth. I fought so hard to make it through the last 2 years and I thought things were getting better, but here I am again. Doctors keep telling me all the ways that this stupid disease is going to kill me, but they don't seem to have any ideas on how to make it better or even more comfortable in the interim. This is no way to live.
Now, don't go freaking out that I am going to go off and do something stupid. I would never do that. I would never do that to my family or those that I love. I feel very strongly that suicide is a purely selfish act and I would NEVER do that. I am just saying that I am at the point in my life that if something happened, I wouldn't do anything to stop it. This is not news to my family. They know that is where I stand, as does my doctor. I am tired. Tired of fighting, tired of losing, tired of the entire mess. I can't make plans to do things as simple as going to a play because I don't know if I will be in the hospital or not in a couple weeks. I can't make plans to go see my best friend because goodness knows I can't be that far away from the doctors that are familiar with my ridiculous body! I can't even work anymore because even working from home, I wasn't able to be there consistently enough to call it gainful employment!
So, now that you have taken a visit to the dark side of my brain, are you sorry you went? I know that there are good days to go along with these bad days, but it is very frustrating when the bad seem to outnumber the good. I don't need platitudes about how god doesn't give you more than you can handle or to keep my chin up because there are better times to come. I need answers. I need resolution. I need a break from all this, but that doesn't seem to be in the cards these days.
Well, I will try to continue to be honest and open here in this little blog of mine. Like I said, it is harder than it seems...I feel very naked laying all this out here on the table for you to see. This is the part of my world that I try to keep to myself, for the most part. So, be gentle when you see me - remember, I am fragile and broken. My skin isn't as thick as it once was and sometimes the things people say hurt and make me cry whereas it used to roll off my back. My soul is as bruised as my arms and I don't bounce back as easily anymore. I'm not the Sally you once knew...this Sally has been through a lot and has learned a lot about herself and others. I have learned that friends you thought would be with you through thick and thin have run away into the mist of the night. I have learned that people you may have thought of as casual friends or even acquaintences are the strongest friends you could have and that they will be there for you through anything.
Most importantly, I have learned that my sister is the strongest person I know and that she is there for me anytime I need her - at 2am when she is sound asleep or at 4pm when she is at work and has to scramble to find someone to cover for her. I have learned that she is the best sister I could have ever asked for and I would be lost without her. I love her with all of my soul and appreciate everything she has done more than I could ever express. In addition, she is an amazing mom and wife. She is bringing up the most wonderful little man. He has tremendous manners and a kind heart and spirit that is evidence of his spectacular parents. I am so proud to call her my sister.
Sally
I've never wanted to be looked at as a complainer or a whiner, especially since getting sick. I try to find the positive side of things and keep a cheerful demeaner, which I think I am pretty successful at. There are days though that it is much more difficult than others. This has been one of those days.
I was awake several times last night after getting an early start to sleep, which is unusual lately. When I finally woke for the last time at about 7:30 this morning, I felt like you do when you have laid in bed too long and your entire body aches. The nice thing about that feeling is that it goes away after you start moving around a bit. The bad thing about the feeling this morning was that it didn't go away...it actually got worse the more I moved around. So, I took my morning meds and some extra pain meds and came upstairs to sit in the chair and relax before making breakfast because at that time, I was afraid I would throw up if I even smelled food. I sat there in some pretty intense pain for several hours before I finally decided to try a sandwich (yes, it was lunch time by this point). Fortunately, despite a few trips to the bathroom, the sandwich stayed down. Unfortunately, the pain just continued. I probably should have called the doctor's office, but I get so tired of hearing about how no one knows what more they can do for me. So, I just kept taking the extra pain meds as scheduled and made it through the day.
Now I sit here at 11:20pm and am wondering what I am going to do. The pain is better than it was first thing this morning, but I suspect that has more to do with all the pain meds than the pain actually being any better. If it is still this bad in the morning, I will call the doctor and see what they have to say. I suspect the answer will be that if the pain gets to the point that I can't tolerate it anymore, I am to go to the hospital. Let's face it, I really don't want to do that though.
I get so frustrated. It's so lonely feeling like this. I know that mom and Becky try to be as supportive as they can be, but there is no way that they can really understand what it is like to be in this situation. It seems like there are more days than not lately that I wonder why I was left here on this earth. I fought so hard to make it through the last 2 years and I thought things were getting better, but here I am again. Doctors keep telling me all the ways that this stupid disease is going to kill me, but they don't seem to have any ideas on how to make it better or even more comfortable in the interim. This is no way to live.
Now, don't go freaking out that I am going to go off and do something stupid. I would never do that. I would never do that to my family or those that I love. I feel very strongly that suicide is a purely selfish act and I would NEVER do that. I am just saying that I am at the point in my life that if something happened, I wouldn't do anything to stop it. This is not news to my family. They know that is where I stand, as does my doctor. I am tired. Tired of fighting, tired of losing, tired of the entire mess. I can't make plans to do things as simple as going to a play because I don't know if I will be in the hospital or not in a couple weeks. I can't make plans to go see my best friend because goodness knows I can't be that far away from the doctors that are familiar with my ridiculous body! I can't even work anymore because even working from home, I wasn't able to be there consistently enough to call it gainful employment!
So, now that you have taken a visit to the dark side of my brain, are you sorry you went? I know that there are good days to go along with these bad days, but it is very frustrating when the bad seem to outnumber the good. I don't need platitudes about how god doesn't give you more than you can handle or to keep my chin up because there are better times to come. I need answers. I need resolution. I need a break from all this, but that doesn't seem to be in the cards these days.
Well, I will try to continue to be honest and open here in this little blog of mine. Like I said, it is harder than it seems...I feel very naked laying all this out here on the table for you to see. This is the part of my world that I try to keep to myself, for the most part. So, be gentle when you see me - remember, I am fragile and broken. My skin isn't as thick as it once was and sometimes the things people say hurt and make me cry whereas it used to roll off my back. My soul is as bruised as my arms and I don't bounce back as easily anymore. I'm not the Sally you once knew...this Sally has been through a lot and has learned a lot about herself and others. I have learned that friends you thought would be with you through thick and thin have run away into the mist of the night. I have learned that people you may have thought of as casual friends or even acquaintences are the strongest friends you could have and that they will be there for you through anything.
Most importantly, I have learned that my sister is the strongest person I know and that she is there for me anytime I need her - at 2am when she is sound asleep or at 4pm when she is at work and has to scramble to find someone to cover for her. I have learned that she is the best sister I could have ever asked for and I would be lost without her. I love her with all of my soul and appreciate everything she has done more than I could ever express. In addition, she is an amazing mom and wife. She is bringing up the most wonderful little man. He has tremendous manners and a kind heart and spirit that is evidence of his spectacular parents. I am so proud to call her my sister.
Sally
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