5:15 p.m. - 2007-11-12
You Say Tomato, I Say Fuck You
Hey, I'm averaging one entry per month! Way to do the very least I can do.
I keep getting the urge to write and vent on here, but when I think of all the crap I need to update everyone on, I get overwhelmed and bored and never wind up doing it. Because I've been sick for so long, I now report every appointment, test, and finding to a thousand different people-- my husband, my grandmother, my in-laws... It's great that people are giving a shit about how I feel, but I haven't felt like writing a story on here because it's already been repeated word for word previously. I just can't seem to make it interesting, since I'm sick of it myself... and it's been so difficult to concentrate lately. I'll try to do a Readers' Digest version though, so that I can go back to blogging on more current happenings in my life.
Ok, when I last wrote, I had undergone a load of blood tests and CT-scans ordered by my infectious disease doctor. He said they were all normal-- or rather, I didn't have an infectious disease that he could deal with. My blood tests still showed elevated C-Reactive Protein and ESR levels, which had also been high when my physician had tested me two months prior. All it means is that there is "inflammation somewhere in the body." The other thing I saw was that my white blood cell count was about as high as it could be without crossing out of the normal range.
The infectious disease doctor kept asking me if I had joint pain or rashes. I was just confused and frustrated, and replied, "Uh, no... not really. I've had problems with my hand and wrist for, like, a year and half. Sometimes my elbow hurts, but I think I sleep on it wrong."
He sent me out of the door with a recommendation to see a rheumatologist (I know I spelled that wrong, but I could give a fuck) because they could check my muscles for antibodies. And he gave this helpful advice, "Sometimes people just run fevers... Six months is a long time, but... it can go away on its own. Try not to get upset."
FUCK YOU. (Oh, by the way, my usage of the word fuck has increased by about a gatrillion perecent. There are just no other words to convey my anger and frustration and fear lately.)
I felt like I was just being passed off to another fucking doctor. I wasn't going to make an appointment with the fucking rheumatologist. I was fucking sick of tests and being treated like having a fever and feeling like I have the energy of a tortoise for six months was no big deal. If they didn't care, I wasn't going to fucking care.
A few days later, I was watching one of my brain-candy shows, ("How Do I Look?" on the Style network), and the woman nominated for a makeover had lupus. The host had her explain the disease, and I got increasingly worried with each sentence she spoke. Later that night, I looked up the Lupus Foundation of America on the web, and found that I matched almost all of the symptoms on the list. Most people diagnosed with lupus first knew something was wrong because they ran a persistent fever of about 100 degrees, they felt fatigued, their ESR and C-Reactive Proteins were high, joint pain, some even tested positive for Mono over and over (which I did), despite later finding out they didn't have Mono. Other things included experiencing hair loss and super-sensitivity to the sun, which has been a complaint of mine in the last year. Most people diagnosed are women about my age. The only thing that didn't fit was that I didn't have the skin rashes that are common with lupus. But the website said that there is a decent percentage of people diagnosed with lupus that never had skin rashes.
And rheumatologists are the doctors that deal with lupus. I started to think about the questions the infec. disease dr. was asking me, and it seemed like he suspected something that he didn't share with me. Ok, fine, I'd go see what this guy knew.
I had to wait more than two weeks for an appointment. In that time, everything started to go physically downhill for me. Every night like clockwork, at about 6pm, I'd start to squirm. I couldn't sit because my knees hurt so badly. I wanted to lay flat, because it seemed to be the only way that the pain was tolerable. My wrist/hand continued to burn, but I had gotten used to that, so it wasn't as scary as having other parts of my body starting to give out on me. Erik took pictures of my right ankle bone one morning, once he saw that it had swelled to about 3 times its size. In the nights just prior to seeing the rheumatologist, the pain was so bad I couldn't sleep, I was howling and writhing on the bed. And no amount of Aleve, Ibuprofen, Tylenol helped even in a minimal way.
Finally, Erik and I got to see the rheumatologist (I'm sick of seeing that I keep mis-spelling that fucking word, so I'll just call him Dr. K. from now on). Erik came in with me in case I forgot anything, which was likely considering how cloudy my mind has been lately. It was a good, long appointment, about 45 minutes, which was a relief. It seemed like I needed to talk at warp speed and fit all my complaints into a tidy 10 minutes with my other doctors.
He sent me for more tests, including initial screens for lupus and rheumatoid arthritis, as well as X-rays. I only had the blood work done on Friday, and since today is a holiday, I don't know any results. In the past, I would have just waited until my next Dr.'s appt. to hear the results, but now I want a copy sent to me as well. I really need to be more proactive with my health and be more informed about it all.
Dr. K. also prescribed me Vicodin for the pain at night. I was kind of nervous to take it, because you hear so much shit about people buying/stealing it to get high, getting addicted, etc. But all it did was make me a tiny bit drowsy, a little bit queasy, and made the pain about 30% less horrible. I had been hoping for much more relief than that.
The next two nights after the appt. with Dr. K. were relatively uneventful. I felt achy, as usual, and weak, but nothing I couldn't handle. And then Saturday came. I washed my hands in the morning, and the water came out cold... and the pain hit my hands like a thousand nails. I couldn't curl my fingers, or make a fist. Long after I turned off the water, my fingers were gnarled and burning, numb but somehow still aching.
A couple of hours later, I was inconsolable. My toes hurt, I couldn't flex them. My feet were stiff, my knees ached, my ankles ached, but the worst was my hands. How could I be 26 years old and not be able to make a fist? This wasn't supposed to happen for fifty years! What was happening to me?!?! The pain was bad enough, but my panic was out of control.
I couldn't believe I was somebody taking vicodin before noon. And all it did was take the pain out of the level where I stopped crying. (I should note that I am not a baby when it comes to pain. I have six tattoos, one of which is on my backbone, and another of which is on my achilles heel-- a spot where the tattoo artist said even he wouldn't get a tattoo. This from a guy with tattoos covering his 90% of his body. And I never shed a tear or yelped or anything during any of those.) Anyway, I was determined to get some enjoyment out of my Saturday with Erik. I made myself shower, and the hot water seemed to help a small bit. Erik had to help me with things like putting my socks and shoes on, and tying the laces. But we got out for a couple hours in the later afternoon, and my spirits had picked up.
But that evening, it all returned with a vengence. Everything ached like it had that morning, but it also now felt like I was on pins and needles, and my feet looked like over-inflated white balloons. I couldn't walk on them. I had to cover my mouth so I wouldn't scream, as I am in an apartment building, and don't want my neighbors to hate me. Or call the police and report us. There was a long discussion that night about whether Erik was going to make me go to the emergency room. We just didn't know what was going to happen next, and the tremendous swelling was really scary.
Later Erik and I had researched rheumatoid arthritis when we saw that I was being tested for it, and I am so scared about it right now. It's so close to Lupus, it's unbelievable. Both diseases have no cure, only treatments, and those afflicted have to deal with flare-ups/relapses for the rest of their lives. I thought for some reason, that R.A. was just, uh, really bad arthritis. But it turns out it's actually a disease in your blood. Like lupus, your cells can't tell good from bad, so good cells attack and kill other good cells, thinking they are diseased and need to be fought off. Both lupus and R.A. can be fatal, but they generally aren't, with treatment and careful monitoring by a doctor. Both diseases involve swelling, arthritis, and chronic pain and exhaustion. R.A. is different from lupus because it doesn't have skin rashes. And both diseases (although lupus to a greater extent) are some of the most difficult diseases to diagnose that exist. It can take weeks to even (gulp) years.
Right now, I feel really depressed and angry. I don't know what I did in a former life to deserve the cards I'm being dealt. I thought I already was dealt my "challenge"-- my abusive childhood, my PTSD. If I have one of these diseases too, it seems like I'm never going to have a time in my life that involves peace and happiness. I know I'm also in a bit of a self-pitying stage, but I'm sure it will pass once I have some answers.
It's the not knowing that is so frightening for me right now. Everything is changing, getting worse so fast, I have no idea what's going to happen next. I'm afraid of every morning and night, because it seems like some part of my body hurts more and more every minute. I don't know what's coming next.
I thought the fever, the general feeling like crap was the problem, the heart of what was wrong. Now it seems like it was just the first couple ingredients in a complicated recipe. And maybe only now am I approaching the boiling point.
I hope I made some sense in this entry. My head is so fucking foggy right now. This just fucking sucks.
