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...
Saturday, April 28, 2007
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
Wednesday, April 11, 2007
My first posting!
Hello! Based on the encouragement of others, I have decided to start a blog to keep everyone updated on what is going on in my little world.
I'm sure that most of you know the basics of what has been going on in my life. In the summer of 2005, my world changed dramatically. I developed necrotizing pancreatitis and my pancreas ate 4 holes in my intestine. As a result, I was in the hospital for approximately 12 months before the holes spontaneously healed and I was able to be discharged. Because I was in the hospital for so long, I had nothing when I got out - no car, no house, no cat, no job... So, now I live with my mom in her finished lower level. She has been so wonderful about not only letting me live here, but also with putting up with my moods and unreliable health situation. For the first few months at home, things went well and I was able to get a new job, went back to school and was enjoying the freedom of being "on the outside" again. Unfortunately, in November, everything seemed to have gone downhill again. I have developed chronic pancreatitis, which is very painful and is limiting what I can do and what I can eat. I have also developed an immune disorder that has allowed me to get multiple infections which have required 7 hospitalizations since Thanksgiving. It seems like I can only be home for a few weeks at a time before another infection strikes. I am now receiving monthly infusions of IgG in order to try to boost my immune system. All this in addition to my asthma has left me pretty worn out and tired.
As you can imagine, all this has changed my life dramatically. Last month, the doctors finally convinced me that it was time to stop working and apply for disability and medicaid. So, I am in the process of trying to be determined disabled by both the state and social security. I should hear something from the state in the next week or so, but social security takes 6 months or so before they make a determination. I am hopeful that medicaid will be approved soon because I would like to be able to let my doctors bill someone and also get some prescriptions! Once the state disability is approved, I should be getting some sort of $$$ as well, which I definitely need. I am not accustomed to no paycheck.
On the positive side, I am getting to spend lots of time with Andrew. He is such a joy! He just turned 3 in February and is all 3-year-old boy! We love to play with his tractors and scooper-trucks. Mom and I watch him several Saturdays a month. He and I watch cartoons in the morning...can't go without watching Handy Manny together! We are planning to do some fun things this spring/summer with him. This Saturday, he and I are going to make cookies. He loves to do things with Aunt Sally and is generally happy just to spend time together coloring and playing.
So, that's my world in a nutshell. I am hoping to keep the blog current, so feel free to check back often and leave me comments.
Have a great day!
Sally
I'm sure that most of you know the basics of what has been going on in my life. In the summer of 2005, my world changed dramatically. I developed necrotizing pancreatitis and my pancreas ate 4 holes in my intestine. As a result, I was in the hospital for approximately 12 months before the holes spontaneously healed and I was able to be discharged. Because I was in the hospital for so long, I had nothing when I got out - no car, no house, no cat, no job... So, now I live with my mom in her finished lower level. She has been so wonderful about not only letting me live here, but also with putting up with my moods and unreliable health situation. For the first few months at home, things went well and I was able to get a new job, went back to school and was enjoying the freedom of being "on the outside" again. Unfortunately, in November, everything seemed to have gone downhill again. I have developed chronic pancreatitis, which is very painful and is limiting what I can do and what I can eat. I have also developed an immune disorder that has allowed me to get multiple infections which have required 7 hospitalizations since Thanksgiving. It seems like I can only be home for a few weeks at a time before another infection strikes. I am now receiving monthly infusions of IgG in order to try to boost my immune system. All this in addition to my asthma has left me pretty worn out and tired.
As you can imagine, all this has changed my life dramatically. Last month, the doctors finally convinced me that it was time to stop working and apply for disability and medicaid. So, I am in the process of trying to be determined disabled by both the state and social security. I should hear something from the state in the next week or so, but social security takes 6 months or so before they make a determination. I am hopeful that medicaid will be approved soon because I would like to be able to let my doctors bill someone and also get some prescriptions! Once the state disability is approved, I should be getting some sort of $$$ as well, which I definitely need. I am not accustomed to no paycheck.
On the positive side, I am getting to spend lots of time with Andrew. He is such a joy! He just turned 3 in February and is all 3-year-old boy! We love to play with his tractors and scooper-trucks. Mom and I watch him several Saturdays a month. He and I watch cartoons in the morning...can't go without watching Handy Manny together! We are planning to do some fun things this spring/summer with him. This Saturday, he and I are going to make cookies. He loves to do things with Aunt Sally and is generally happy just to spend time together coloring and playing.
So, that's my world in a nutshell. I am hoping to keep the blog current, so feel free to check back often and leave me comments.
Have a great day!
Sally
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