I haven't been able to really blog that much because I'm struggling with a lot of fatigue because of at least two hours of therapy a day and had some major issues on Friday with my blood sugar. Nutrition is trying to increase my tube feed rate to get me on just overnight. I FAILED today w/ blood sugar issues, so they aren't going to make any more changes until Monday, depending how the weekend goes. One of the goals coming in was to get my tube feeds back up to a rate where I can get them all in overnight. This is so I will have more of an appetite during the day and not have to carry my backpack around with me all day. So, Wednesday evening we increased my rate by 5 cc's so I could be off for five hours a day. I unhook at 10 am and hook back up at 3 PM because they take me for PT/OT at 10 usually and they don't like to disconnect me twice. I'll change that schedule more when I am out of here to fit the schedule I have for my REAL life out of the medical environment.
Thursday went well being off of it for five hours, and I actually felt better because I needed that time off for my gut to clear out some of the formula. When it runs constantly, I get backed up a lot and feel full all the time. Unfortunately, Friday didn't go quite as well. I was so tired on Friday that I slept through breakfast (which is usually half a piece of toast or a bowl of Jell-o) and didn't have a chance to eat my snack (SF, fat free ice cream) before they unhooked me and took me to OT. While in OT, I got really sick, started crashing, and was not feeling well at all. Fortunately, the dietitian came in to ask me some questions and I told her that the problem I had before when trying to increase the rate was that during the time I was not infusing, my blood sugar would go crazy and by the end of the day I was so tired and weak I could hardly get to bed or even do anything at all. She could tell I was not doing well and went to the kitchen and got me some of my SF Jell-o and pudding and brought it back to me to eat in OT so I could get through the rest of it and PT too. She told me from now on to always take my snack to OT/PT if I don't get a chance to eat it before. I told her it was all a fluke because usually I would have at least eaten a little bit for breakfast, but was having a particularly bad day and it just ended up I didn't get anything in all morning. I have to be really conscientious of the importance of trying to eat a little but at regular intervals when I am not infusing so that I can keep my blood sugar stable. She told my nurse, who was very concerned, and as a result all day they keep making sure I have eaten something...some small bite of anything throughout the day. Unfortunately when I eat if my dumping syndrome kicks in, that will make my levels go crazy too. I also get really sick from that, so eating is definitely not a guarantee that I'm going to feel better! It could make me feel worse! In this case, fortunately I did feel better and I thought I probably would because I could tell I wasn't feeling well because of NOT eating. However, with it getting out of whack in the morning it ended up being wacky all day so I had a really rough day on Friday. I have tried to keep it up. Hopefully I have gotten it back under control, although I have a headache now, so I'm not sure. I'll keep working on it. This is the craziest disease!
I don't have a solid discharge (d/c) plan yet, but the therapy coordinator talked to me today about what things I need to work on to get home and asked me a lot of questions about home setup and what I struggled with the most at home. We are starting higher level OT now and planning to work on home "chores" like trying to do some laundry, getting in the car, handwriting, picking things up off the floor (they may give me a "reacher" device), and getting in the shower. I'm not going to take a shower or practice in their shower because I am concerned about the germs, but they are going to help me in other ways to work on that. They are going to get me on the floor and help me work on getting back up. PT is working with me on steps & balance more. I am using a cane to walk and it does seem to help me now, although once in a while I still wobble and they have to grab me and my gait belt to keep me from falling.
I'm stronger and my balance is better with the cane. My endurance is STILL really low. I tire very easily and am still in a lot of body pain and have a lot of numbness in my hands and feet. So, we will also work on energy saving techniques too w/ OT...how to get things done utilizing least energy possible. This includes sitting down as much as possible to do things, getting everything I need together all at once when I am up and putting them close to me so I don't have to keep getting up and down, and basic things like that. The social worker is trying to get me into a program where an aide will come in a few hours day or week, depending on my desires/needs to help w/ things I have trouble with like laundry, vacuuming, cleaning, running errands, any cooking I may want/need, general organization and other work to make life easier. The good thing about this program is I won't have to be "homebound" under Medicare standards because it's not a Medicare program. I can still live life, volunteer, go to church, drive when I feel like it, go to friends, houses, and run errands when I want. I call the shots. It's just some support for things I have trouble getting done and would make my life easier, make me less dependent on my parents, and if it goes well, could lead to my ability to move out on my own someday. It will help me be able to do more things a "normal" person would do since it will take away some of the other pressures and things that can zap my energy and prevent me from doing certain things. I can choose anyone to do this, or the state can recommend someone to match up with me. The social worker suggested that I not choose someone who is currently a friend because, no matter how close I may feel, once they start doing this kind of work for me and getting into some pretty personal stuff potentially, the relationship may change. I agree with that, but am hoping I can find someone who shares my values and it won't be too difficult to find a match, whether through the state or the ideas of others who may know someone who would be good to work with me.
I know they want to do a home evaluation before I leave. This means someone from here (or perhaps a related facility closer to my home) will go to my house and see what accommodations or adaptive equipment I may need to help make things easier and safer when I get back home. I already have a hospital bed. They may suggest a shower seat, I know I will need a cane for a little while, and a reaching device could be helpful too. The SW also wants me to meet with someone from this organization that will provide me with an aide to discuss exactly what I need and how they can help. She's trying to see if I qualify, but doesn't think it will be a problem. I had hoped to be home for my b-day on Thursday because I have been in the hospital my last two b-days, but I don't think that is reasonable at this point. I think I'm getting close to the end, but still have a ways to go with certain things. I plan to have some kind of big celebration though with friends and family once I am home though...I seriously need some time with people outside of the medical environment. This is about to drive me crazy! I need to talk about things not medically related...anything!!! Just ANYTHING!!! Months of this ridiculousness...I've been in almost as much as out since the beginning of June I think. Hopefully, this is going to be the last for a while. I have my tube now for nutrition so that avoids the admissions to replace my tube, admissions for malnutrition (hopefully...if I can tolerate them ok and absorb the nutrients), and this admission for fall related stuff. There's always a chance of complications, bowel obstructions, anemia, and other wacky things, but I hope that with this j-tube I will be at least somewhat more stable, energetic, and able to function more normally!
Thanks for the prayers. There's a lot going on with me medically and a lot going on in G-PACT too. We are making some really cool progress, connections, and doing a lot that has the potential to take us pretty far. We just deposited our $20,000 Chase grant that people worked so hard to help us get, and we have some very cool awareness ideas on that! We are rewriting our Bylaws because we have grown and changed so much it's become necessary and have a number of fundraisers and other activities planned. We are getting a new, very cool website soon. Medtronic is including us in their press releases they send out to patients, Thrive Rx wants to have a G-PACTer to represent DTP on their board, and we have physicians referring us to their patients all the time. Our fan page on FB keeps growing and growing and growing, our support groups are expanding, and we are getting so much interest it's hard to keep up with everything! We are starting to make plans for the DDNC and plan to attend DDW again this year. There is so much I can't remember! Things are moving in the right direction and it's exciting to see patients come together and have such a desire to help us increase awareness of DTP! I'm so ready to be healthier so I can spend more time focusing on G-PACT and getting back to my more normal life at church, with friends, and the other things I enjoy doing.
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