Life with a Flare

I just realized that 3 months have pasted since I last posted on here. They have been a crazy 3 months at that. In my last post I had mentioned uncertainties and hanging on by a thread as I was not tolerating my feeds. I ended up spending a good portion of January inpatient due to ever worsening GI motility. I had some pretty extensive testing that did not give us any answers, which was frustrating. I was finally discharged not tolerating any better but forcing myself to push on with feeds because I wanted to get out of the hospital. I also had to increase my IV fluid to 1-2 liters a day. I now run fluids and/or feeds 20 hours a day, but thankfully I am back up to a healthy weight. I was at such a slow rate at one point in the hospital they used a med pump instead of a feeding one. A few theories were brought up by a GI motility specialist I am now seeing in addition to my normal GI, one being there is an autoimmune issue and the others are all genetic issues which can be contrib...

Remember that time I tried to blog for a week straight and failed miserably? It wasn't totally my fault, I ended up finishing out feeding tube awareness week at CHOP due to an out of place tube, how ironic. On the brightside Valentines day in the hospital is now something I can check off my bucket list along with Halloween and my birthday. I haven't talked much about my attempted transition to adult care. So far I have cardio and a GP and I am not getting very far with the rest. My peds GI had mentioned to me that usually they transition patients at the end of their first year of college but I had been really sick and was still pretty sick so I did not have to transition quite yet. She did want me to see an adult GI at Temple Hospital because he was the top doctor in the country for gastroparesis and might have options not available in pediatrics, and possibly at some point I could transition. He had one non FDA approved medication I tried and failed and then he wanted me to ...

I have been writing less frequently because I am too busy living life. I have had very little pain since starting Voltaren. I must say I much rather be living life then just be blogging about it! Even my hands haven't been getting painfully cold or turning colors lately! This weekend I went to a Temple admitted students day. It was so much fun to see the campus again  and even more exciting since I will be there next year! The fact I am going to be in college next year has not totally sunk in yet. The only think I am freaking out about a bit is orientation, since freshman sign up for their courses when they go to orientation. The earlier you go the better selection you have. The assistant dean of the College of Education was encouraging me to go to the first or second one. The first one is June 27(or that weekend anyway) and I am having surgery on June 24. I was really hoping to wait till after I was off crutches, but after talking to the assistant...

I haven't mentioned much about the doctors appointments I had last week yet so I thought I would elaborate. I mentioned to my new PCP how my hands get really cold, like to the point it is painful and they are a different color. I had thought he would have said it is just poor circulation, but instead he said it was probably Raynaud's which was probably related to what ever autoimmune disease I may have. Totally forgot to mention this to my Rheumatologist the next day. Anyway Wednesday she had called and said she was not sure I should have hip surgery but I needed to stop my medications right away because of the surgery. Anyway she talked to my OS and everything got cleared up I guess because she seemed less worried Thursday. Although she went over the fact that if there was an autoimmune condition the surgery will not make the hip completely better. She also seemed to be leaning towards autoimmune arthritis again, and briefly mentioned starting to treat it more when I...