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

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

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

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

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

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

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

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

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