jvstalostgirl

i'm so bad at journalling on here. my last entry posted was when my friend haley passed away. since then i lost two more friends, shea and laura. these diseases really suck. my own health has been in a decline as well. i stopped tolerating my j tube feeds and i've lost 70lbs. and though its nice to fit into smaller clothes (some of my things are actually mediums now!) after being mega chubby my whole life, it sucks that i'm wasting away. my doc started me on marinol, the marijuana pill, about two months ago, so i've been able to eat a bit orally, though not what/how much i need to be taking in, but it has slowed the loss and now i've been bouncing back and forth within the same 10lb margin.

lots of signs are pointing towards mitochondrial disease, so i've been referred out to someone at UPENN to investigate that further. i also got sent to a neurologist last week because i've developed tremors and my muscles give out on me a lot. i got a walker the other day which could have been depressing, but as it's sparkly pink and has a seat with a basket underneath and has made my life so much easier, i'm mostly feeling positive about it. and today (well, yesterday----friday.) i finally got my handicapped placard for my car---no more hiking a mile across parking lots!

i got a bump in my pain meds today too (he pushed my fentanyl from 37mcg/hour to 50mcg/hour) and for the first time i actually feel like the fentanyl is helping. the true test will be when i wake up in the morning, though--that's when my back pain is the worst despite having a fancy 3-inch memory foam mattress pad.

i'm also awaiting the arrival of my new over-the-bed table, because mine broke the other day. the handle, which was welded on, literally just fell off rendering the entire thing useless. (thanks for the quality control, walmart!) the one i ordered is bigger and nicer though, and i paid about the same as i paid for the one from walmart so i'm feeling pretty positive about that too. though until it gets here, im having to limit my computer time as i can't sit with it very comfortably at the moment.

i've been struggling with depression lately, but i've put my foot down about psych meds as i've had nothing but terrible experiences with them in the past. (and, if you know me IRL, you know that i've been on pretty much all of them at one point or another.) all i take is ativan for the aspergers/anxiety---3mg a day, and it keeps me at a pretty even keel anxiety-wise. i've mostly been trying to ignore the depression as much as possible. when i start feeling upset i put something on the tv or nap or whatever.

school's been going pretty well so far. i've dropped down to part time, so i've only got two classes this semester--philosophy in film (the first film we are dissecting is AI Artificial Intelligence, which i really like! and for our final paper we can pick any movie we want to write about!) and elementary algebra. so far i've kept up pretty well with the math, which is super impressive because i suck at math and have mild dyscalculia (number dyslexia). there's only one concept i don't understand so far, but my girlfriend promised to explain it to me. and she teaches elementary school so she's really good at explaining things.

anyway, that's my life at the moment. i hope this entry did a good job of catching up as well as sort of introducing my mess of a self to my new watchers. i'm a bit out of it as its 4:30am and i've taken my melatonin, so i'm off to get some sleep. unfortunately i can't sleep in as my aid is coming at 10am. sundays are the only day i can sleep in now--my aid comes tuesday thursday and saturday at 10, and i have class monday wednesday and friday at 10. i've got to start going to bed earlier or napping more!

anyway... good night! <3

for my friend stopped running today.



my friend haley passed away today. complications due to gastroparesis/dysautonomia.

i feel like i can't breathe.

i went to my GI today. we're going to put the NJ tube back in, and i got in contact with a supply company that also has dietitians to decide on rate, formula, etc. i called my Gi back and let them know what info Apria (the supply company) needs from her, and apria will call me back when they've got their end of it sorted out. in the meantime, i am also waiting for a call back from interventional radiology to schedule my NJ tube placement. i spent most of the day on the phone calling around because no nutritionists even knew what i was talking about and when they figured it out they said, we dont do that. so now all i have to do is await phone calls. IR at least should call me tomorrow, they said. and when i hear back from apria i should know whether i'm going to get a pump (aka if medicare is going to pay for it) and all that kinda stuff. fingers crossed.

just copied from my GP journal:

On June 12 2012 I had a second NJ tube placed. It was an 8french and was more comfortable than the first, but I still had no feeds. In the midst of this, my GI left the practice. Another GI at the practice told me to go to the ER and he would admit me to the hospital and get me set up on feeds. On June 28 2012 I was in the ER waiting for over six hours with no meds. I got really nauseous and threw up my NJ tube in the waiting room. I was admitted for four days, during which my first endoscopy and gastric emptying study since 2006 was done along with a lot of blood tests, by a third doctor at the practice who is now my current GI. The endoscopy showed a lot of bile in my stomach and resting in my intestines, which she attributed to having no gall bladder and having gastroparesis--the bile has nowhere to go and my stomach doesn't empty it. Other than that the EGD was good--I am negative for eosiniphilic esophagitis and h. pylori and I had no ruptures or tears. My prealbumin (the main and most accurate indicator of malnourishment) was 24, a drop from 32 in January when I first became severely ill. Normal range is 17-36. Medicare will not pay for tube feeds until my prealbumin has dropped below 17 or my weight drops below average.

While I was in the hospital, they were giving me 3mg IV dilaudid every 4-6 hours. They blew more than 6 veins with my IV placement, and with my second to last IV, it was left in despite my vein being blown for hours. I now have permanent scar tissue on my arm from it. I was also discharged on July 1 without being weaned off the IV dilaudid and experienced terrible withdrawal symptoms for days afterwards.

The gastric emptying study showed that I had 66.6% of food remaining in my stomach after 2 hours; normal is less than 50%. After four hours I had 54.4% left, and normal is less than 10%. Severe gastroparesis was confirmed for good. (My previous GES years ago was a false normal result, due to them not telling me not to take my reglan the morning of.) I was put on additional meds: a bile-binder called colestipol and carafate, which coats the esophagus and stomach. I also finally got approved for Zofran by Medicare.

    As of July 18 2012, I am scheduled for blood tests in this week to check my prealbumin again, now that I am back to not being able to hold down solids. When/if it drops below 17, my GI will set me up to have a surgical J tube placed.

well that was an adventure. in my building (building B), there is one outside door that least to two apartments, upstairs and downstairs. (mine is upstairs). well the hallways each have smoke alarms that are connected. if your apartment goes off, JUST your apartment goes off. but if the hallway goes off, every other hallway in the building goes off. well, the hallway started going off while i was resting/trying to nap, and i went outside and a couple other people were out there and nobody knew what was going on, well it was going for a few minutes and usually if it goes off from someone smoking in the hall it stops after a minute. so i went to the managers, but he wasnt there so i called 911. well, i called just in time cause just before the fire trucks pulled up smoke started pouring out of one of the upstairs windows (the apartment 2 down from me). apparently the guy there had put a pot of veggies in butter on the stove to simmer and forgot about it and went out. he came home as the firemen were heading in. luckily there was no fire yet, so they just had to pump out a ton of smoke.. and dude probably needs to buy a new pot. the good news is that our FD's response time is SICK. they were there in under 3 minutes. i'm glad i thought to call in cause nobody else did, and they got here just in time. thankful everyone and every cat is okay. ♥