- 6 years ago
- Wedding: October 2012
I hate being sick. I know I’m not the only one on these boards with unpleasant things going on, and I know that mine aren’t the worst, by any stretch of the imagination, but right now, it’s just too much to keep in. I’ve talked to Paul (mostly trying to explain, not complain, and to apologize for letting what’s going on make me crabby) and I’ve talked to my mom (same reasons), but as neither one has ever been particularly ill, all they can do is listen and give me a hug. And I appreciate all of that, I really do! But sometimes I just need to bitch and moan without bringing down the mood in the whole house.
For years now, since I graduated from high school in 2003, I’ve been on-again / off-again sick. Really, it was only for the two years after high school, but everything that happened then continues to affect my health today.
After I graduated, I got a summer job at Kmart to make a bit of money before college started. I didn’t mind the job. It wasn’t fabulous, but it was sociable and people were friendly. Toward the end of July (we graduated in May and started college in August), I was housesitting for my friend’s familiy while they were on vacation. They had a few dogs and a huge house and I got to enjoy the perks of all of it for a couple of weeks.
Now, I have to reach back a little further to summarize that I had been having a lot of dizziness, “grey-outs” (I didn’t lose consciousness, but I did lose my vision) when I’d go up a flight of stairs or stand up from lying down, and severe nose bleeds. Like, hours at a time with the faucet turned up high kind of nose bleeds. I’d seen doctors, had my blood tested, all of that good stuff. I only ever came back “slightly anemic” and was told to up my iron intake (especially when I tried donating blood after one successful donation and my blood never sank during the iron test).
During spring break of my senior year, my dad was teaching me how to ride a motorcycle using dirtbikes. I did great, until he wanted me to go down something steeper than I was comfortable with. I turned the handlebars and, brilliantly, hit the brake at the same time and stopped hard and fell to the ground. I didn’t hit hard, by any means, but I did slam my right knee into the ground. Within a minute, it was swollen to the point that I couldn’t bend it. We called it a day and did a very slow ride back to the truck, where I stripped down to check out the damage. My knee was twice its usual size and already blue and I had a bruise of the inseam of my jeans running down the inside of my knee. It took two months to heal. I went to the doctor to make sure everything was okay, and there was no damage. But they couldn’t explain the bruising, how the bruise continued to grow and spread for those whole two months, going up my thigh and all the way down in a line to my ankle, where a bruise pooled near the arch of my foot. Clearly something was off, but nobody had any idea what, since tons of tests showed that there was no physical damage in the knee.
Anyway, back to housesitting. I got my period. For two weeks straight, using super-plus tampons that I had to change every 15 minutes. This didn’t bode well for my job. When I got dizzy at work and kept bleeding through my tampons while working the register, they sent me home. This was Friday. I went home and called the doctor, but couldn’t get in until Monday. It never dawned on me to go to the ER and I’d never even heard of urgent care. And as for my mom, I didn’t really explain very well how bad it was. I wasn’t scared or anything, I just didn’t know that all of this was that big of a deal, so I didn’t make it one. When I called my work to tell them that I couldn’t come in on Sunday, they told me that was unacceptable. So I quit.
I saw the doctor the next day and they did blood work. The day after that, they called my mom with the results (I have no idea why they called her) and she called me to tell me that I had to go the ER. I needed a blood transfusion because, well, I barely had any left in my body. They did some bleeding time tests and I never clotted for any of them. They transfused me, admitted me for observation and another unit of blood, and then the next day were dumbfounded as to how my counts could be just as low as the day before. And I still wasn’t clotting. No wonder, my platelets (the clotting factor of blood that should never be below 110,000 when working properly) were at 12,000. Nobody told me until a couple of years later that I was dangerously close to organ failure and bleeding into my brain and, well, dying. Being 18, I was still in the pediatric ward, because that’s how it works here, and apparently nobody felt the need to communicate the little details to me.
Yadda yadda, they did a million tests, including a bone marrow biopsy to check for leukemia, all negative. More blood, no increasing numbers, they decide it’s ITP, a disorder where the spleen destroys all of the blood cells, not just the ones that need it (like old ones or bad ones). They tried some medication that seemed to help a bit, kept my numbers at a safe level, told me I could go home but that I needed to see the hematologist to work out a treatment plan. I was there for eight days. I looked like a bruised, plucked chicken from all of the needle marks from all of the blood draws (every four hours).
Then I was out for five when the stuff started coming back. I went back to the hospital, was re-admitted and had my spleen removed two days later. August 15, 2003. I was to start college on August 25, move into the dorms on August 20. I was starting to lose hope that any of it would actually happen.
But the splenectomy helped. My numbers went up, I was released. The next day, our 10-month-old puppy died. It’s not possible to cry with a 12-inch incision down your abdomen.
I started college. Six weeks later, I was in the ER again for severe pain in my left hip. I couldn’t move my leg above my knee. I had no control over it whatsoever. Eight more days, no diagnosis, but they found a medication that worked. Fast forward to December, where xrays show that my femoral head had gotten dangerously thin for no reason they could come up with. They had tested the joint for infection, but there was none. I was on crutches because I couldn’t move my leg again. They decided to put three six-inch pins in my hip to stabilize the bone and promote bown regrowth. I had five days left in the semester, then finals. It was an out-patient procedure. I left the hospital and within 24 hours was in so much pain that I couldn’t even raise myself to use a bed pan. If I fell asleep, my muscles relaxed and I was gripped in such agonizing pain that I’d wake up screaming every time. The ambulance came to get me and I was readmitted.
There had been an infection, but it was in the bone. When they put the pins in, it flared up and spread to the joint and was effectively destroying all cartilage and bone it could reach. I was in the hospital for 12 days this time. They took out the pins. I lost 35 pounds that, at the time, I didn’t have on me to lose. I missed the rest of the semester. I was bed-ridden for the next two months, for the most part. I was required to get up and move around as best as I could, but I couldn’t DO anything. Then my orthopedic surgeon told me that I needed to start strengthening the muscle. I’d been doing physical therapy, of course, but using crutches. He told me to use a cane. So I did. He told me I’d need a hip replacement, but, being only 19, no doctor would do it until I was 25. I was going to have to learn to live with the pain for six years. I decided it was time for a new doctor.
Through all of this, I wasn’t miserable. I was depressed, yes, but not to the point where I stopped living. My mom took me on a trip to Cancun, where I swam in the ocean and swam with the dolphins and even walked around the gigantic preseve Xcaret. I took a lot of pain medication, but I did it all. I just wish I could remember more of it.
When I got back, I found a new doctor. He took xrays and yelled at me for using a cane. Doing so had started to erode my pelvis because the cartilage in my joint was completely gone, I had bone spurs, brittle bone and my femur was digging into the cup of the joint. I had a hip replacement 5 months later, as I put it off to go back to school. I wasn’t able to finish that semester, either. Turns out it’s damn near impossible to take a full course load, work on incompletes from the previous year and function on nothing but minimal sleep, excruciating pain, and copious amounts of pain medication.
But I had the hip replacement in December 2004. I had just turned 20. It was a miracle surgery. I went home on Christmas and had an amazing day. I had slept through the one the year before. I went back to school, finished the term successfully and was thrilled with how things were going.
Between then and now, I have had a host of medical issues crop up, and nearly all come back around to having no spleen (comprimised immune system, which is to blame for the infection in my bone in the first place) and the hip replacement. Being 20 when I had it, I’ve had a lot of problems with the fact that my bones weren’t completely through growing and have experienced debilitating pain at the most random of times over the past (almost) eight years. I regularly get shingles and have had MRSA three times (all 28 days apart, NOT on my period, back in August / September / October 2010).
That brings me to this week:
At the beginning of the week, my left leg was so swollen that my toes kept tingling from poor circulation. The pain in my hip was radiating down my entire leg and I could put almost no weight on it or bend my knee. I went to urgent care, where I had the most wonderful nurse practitioner go above and beyond anything I have experienced in a long time. She really, really listened. She helped. She didn’t know if it was muscle or bone, but she gave me some medication, told me to rest and to get tests done next week to check on the prosthesis. I really only needed the rest and the pain relief, because now my hip feels fine.
But there’s something new. Something I haven’t had before. Ever. I woke up on Monday with a burst blister about the size of my thumb nail on the inside of my right thigh. I thought it was just that — a blister. It felt like I’d gotten burned with hot oil or water, but it happened over night. I toss and turn a lot sometimes, especially when I hurt, and I thought maybe I’d somehow given myself rug burn on the crotch / inseam of my pajama pants, which ride low, so the crotch is a few inches down my thigh. Thinking it was just a blister, I didn’t think to mention it to the urgent care folks.
Fast forward to today, when I now have nine of these blisters, some as big as a bottle cap, some tiny, like a stirring straw opening. I can hardly walk again because of the contact with clothing. They burn. They itch. They HURT. I went to urgent care again and they don’t know what the hell these things are. They swabbed one and are sending it out, but they have no idea. They’re treating it as MRSA, though it doesn’t look like it usually does. My entire body hurts because my skin hurts to touch. Paul keeps forgetting and reaches out to rub my back or my arm or my leg to comfort me, and I recoil and feel guilty because I know it hurts his feelings, even though he knows it’s not him. And then he feels bad about causing me pain, and I feel bad for making him upset with himself. It’s all just so stupid.
And the kicker, if you’ve been patient enough to read this far: Today I picked up my wedding dress and I couldn’t even try it on. In the car on the way down there, the largest blister had gotten stuck to my jeans and when I moved to reach for something, it tore away from the blister and just…HURT. Holy crap, did it hurt. So when my mom and I went in and the woman said, “Would you like to try it on?”, I had to say no, thank you. And she froze for a moment and said, “I don’t think anyone’s ever said no before.” She didn’t mean it in a bad way. She wasn’t rude.
But it made me so sad. So sad that I was there picking up my dress, for a wedding that is under two months away, and I had no excitement. I didn’t care that I was getting it. I was just in so much pain that I was totally detached from and apathetic about the entire thing.
And that, my friends, is something I can tell neither Paul nor my mother, because if I do, I will fall apart. I will fall apart completely because it hurts so much not to care about any of it right now. I know it’s only temporary. I know I have reason not to be excited at the moment, and that those reasons are beyond my control, as I’m all hormonal and sick and all. But it still just sucks.
Blah. Vent over.