Confessions of a sick lupus boy

Now where was I? Oh yes. My ever increasing health problems. I didn't end up in the hospital, thank god. I went to see my primary doctor a week after the initial inquiry. He ran an EKG, took blood and urine (always a fun time) and called the rheumotologist, who promptly booked me for the next day. Yes, that's right. A specialist wanted to see me immediately. We all know that's never a good sign. The good news is that it wasn't an infection or pericarditis. The bad news is that the active lupus is back and my kidney function is failing. Again. The explanation for this is that my body was recovering from ending the cyclophosphimide monthly infusions and maybe I wasn't receiving enough Cellcept. Great. He moved my prednisone from 5mg to 30mg and doubled the Cellcept. I'm also waiting to hear back from them to schedule an infusion of another type of medication. All the while my joints are visibly swelling, I can't sleep, and I'm an irritable crank pot. I'm mad because once again I'm stuck doing nothing because I physically can't do much. I get tired, I get cranky, and nobody wants to be around that mess.

I sent in my SSI appeal. This time I did my homework. I went onto their website and looked at what they classify as "disabled" under the autoimmune disease section. What I have 100% fits the description. I also took out books on lupus from the library. I was excited to fin ally realize that all the symptoms I thought were either just me or in my head were actual lupus symptoms. (At one point I thought the random numb sensation in my hands and fingers, muscle atrophy in my arms, and frequent dizzy spells/difficulty seeing were symptoms of a brain tumor.) As much as it sucks to realize you do indeed suffer from a chronic illness, it makes me feel better to know I'm not nuts and don't have a tumor ;P I tried to make my appeal sound as to the book as I could.

I try to go to the library as much as possible, although reading is a pain because hardcover books hurt my joints. (I know, I sound like I'm about 80.) I've also taken to browsing their CD collection. Don't laugh, sometimes they have recent stuff! I found a bunch of Boston Pops CDs that I'm currently uploading. When I was in high school I was convinced I was going to be in the Boston Pops. My brass group played at the state house once when Keith Lockhart was there and I was truly beside myself. I didn't dare speak. I'm hoping that this much will do what it always does and make me feel better. I will always be a band geek at heart.

My sleeping is getting worse. Not only can I never fall asleep, I've become even more irritable. I can be close to falling asleep and then the smallest sound will jolt me awake. I usually end up throwing in the towel and reading until I lull myself into sleepytime. A few weeks ago I didn't sleep at all and went to the library without eating anything. I nearly passed out and almost fell, but a nice man caught me. Luckily I was able to get back in one piece. I learned my lesson and never go out if I'm not fit to.

Another reason I can't sleep is my constant back pain. I think it might be the swelling in my kidneys. I tried Tylenol PM but that doesn't really do much of anything. I'm afraid to take too much over the counter stuff with all the prescriptions I'm on. My doctor prescribed lorazepam for the insomnia but that doesn't work at all. It just makes me more tired in the morning and slightly anxious.

I am up to my ears in student loans. Without a job, I am unable to pay them. I finally got all my ducks in a row and have all the paperwork to send out. I'm hoping that this experience will teach me not to wait until the last minute and that sometimes following up with a phone call can make all the difference.

The Biggest Loser season 6 premieres tonight. I'm hoping it gives me a kick in the pants to start eating correctly again. I was doing well for quite sometime. It seems that whenever I get sick I let myself eat whatever I want, the ultimate in comfort food. Then it's more difficult to get back on track, esp. when I don't feel good.

Speaking of which, I'm going to eat a brownie. Right now. I never said old habits were hard to break, did I? ;)

Sick of Being Sick

I was very proud of myself. I spent an entire day in the library and pounded out a resume. I even bookmarked a bunch of jobs I was interested in applying to. All I needed was a cover page and I figured I'd be applying to jobs by the end of the week. And then the chest pain started.

I called my doctor on Wednesday and he immediately double booked me for the next day. At my appointment he told me I made the right move in calling him. After listening to my chest and hearing nothing exciting, he checked my oxygen saturation. It was at 92% which I guess isn't awful but isn't good either. He sent me for x-rays at Beth Israel, so once again I waited outside for a cab that the doctor's office pays for and then rode to the hospital. I was the only one in the waiting room bc it was after 5. I was really out again in 10 minutes. I love Beth Israel for a number of reasons. One being I can get my chest x-ray taken in an undershirt and a binder. No awkwardness in being told to take my shirt off. I appreciate that. I barely made the 6:25 train back to Lowell. I missed my phone ringing but got a voicemail from the doctor. He said the wet read of the x-ray looked fine but he would check out the actual x-ray in the morning. The next morning I got a call from my rheumotologist who told me my doctor was going to put me on antibiotics just in case and watch it. So I had to stop the Cellcept while taking the antibiotics because it's an immunosuppressant. My doctor called ten minutes later to tell me the same thing. Good news, right?

Negative. This is the same thing that happened last time. The clinic took x-rays and nothing came up so they treated me for pneumonia. Twice. And then I ended up in the hospital. I think I'll give it a few days just to prove the antibiotics didn't work. Or who knows, I could feel better soon. I'm trying to stay optimistic, but I really don't see this ending without another stay in good ole Beth Israel. Hopefully it won't be as long this time because they'll have a better idea of how to treat it.

So for now I'm being bored in the house watching the 3 channels I get and surfing the net when the stolen wireless works. I'm also having trouble sleeping. Greatness ;P