The best way to move forward is to let go of the past and accept the present. I've accepted most of my current situation; I have an overlapping autoimmune disease that has most likely evolved into both RA and lupus--or very close to full blown lupus and RA. (I'll leave all that implies and entails for another blog). Just like everyone else, I have a past. Except every time I think I've made peace with it and put it completely behind me, it worms its way back into my present. No, I wasn't a drug addict, alcoholic, prostitute, hit man, mob boss, under cover secret double agent or anything like that. I don't even have anything that could come back to bite me in the arse (except a few old injuries and broken bones that help me better predict weather). It's just that even as I knew I was getting sicker and fighting through pain that was getting worse, I thought it would get better. Until one day it didn't. Then everything I knew, everything I was, my life as it was just stopped. At 22 years old. And it's been a long, hard battle since then.
Six years ago I thought I had finally stopped running into the circular brick wall of "what do you want to do? I want to be a mechanic. you can't anymore, so what do you want to do?" when I made the choice to return to college to get my degree in psychology. I had hoped that by the time I finished college, my doctors and I would have found the right combination of treatments so that I could return to work. I've been on medical leave now for a year and a half.
Last month was the first time in ages I truly missed being a mechanic and the reality hit home. While my car was in the shop, I was put in a position that made me realized I'm not a mechanic anymore. I can't fix my car--not even a small job (which was something I could do until last year). Then while I was at my rheumatologist's yesterday for a check up, she again recommended a pulmonary specialist because I have COPD and began the required lecture since I'm one of those dumbasses who also smokes. Except I was diagnosed with COPD BEFORE I started smoking. She didn't see that one coming! She stopped mid lecture as if she heard me wrong. Nope. I started after it was brought under control. Why? Because it was the only way to get a break working in the garage. Yes, there are labor laws that require a certain number of breaks for certain lengths of time plus lunch. But I was a woman working in an all male shop, in a very male dominated field. Spouting labor laws would've gotten me breaks, but would not have gotten me very far in my career. Working my ass off and being one of the guys (even if it stupidly meant smoking to get a 5 minute break here and there during 10-12 hour work days), however, would. And it made me miss the job. Again. It wasn't just a job to me. It was who I was. I was on my way to becoming one of the best. It was a family legacy, albeit I was the first female in the family, but still. I had come across guys who hated me simply because I was a woman and took everything they threw at me and then some. It was my passion. I may have been only 22, but I spent from the time I could walk learning and working on cars. Not many people can say they have a job, a career that they love. No two days were the same, but every day was challenging. It was more than a paycheck and it wasn't a job to me. And just like that, it was gone.
I figured I'd become a therapist to help others like myself who've lost their careers because of chronic illness or injury navigate through all that entails. I finished 2 Associates Degrees with an almost perfect GPA in 2 years before I became too sick and had to withdraw (temporarily). Like any endeavor I put my mind to, I excelled in the classroom. Except math, but I suck at word problems. But in recent weeks my mind keeps going back to the garage. I'm sure I would be a good psychologist, but the passion isn't there. It's fascinating. I've always found people interesting and have always loved helping people, but even if I become healthy enough, do I want to make a career out of it? I love school. It keeps my mind engaged, I get to meet new people, I get out of the house when my body allows it, but a career in psychology? I just don't know. I don't feel the same way I did when I decided to become a mechanic. And it scares me a bit. I've thought about maybe getting an associates degree in chemistry just to be able to do something.
Yesterday was just an unintentional eerie deja vu/walk down memory lane. I took a different route home from the rheumy's to avoid construction traffic and found myself passing the garage, taking the same route home when I still lived with my parents from the garage, driving past the technical school I went to after high school, the places my classmates and I would stop after class, the tiny side streets we used to race down trying to beat each other to the highway.... All these years later, I just don't know how to lay to rest that part of my past. How do you bury part of who you are, or should I say were?
Wednesday, May 29, 2013
Wednesday, May 22, 2013
I Know I'm Going to Pay For This...
It's a little after 7am, I'm milking my second cup of coffee (when I go out in a little while, I know I'll be getting another one, so I don't want to overdo it on the caffeine and decaf just sounds like a waste of money), have my Pink Blossoms candle burning, and some Doors playing. The mutt's laying at the bottom of the bed, occasionally giving me that "will you turn that down?" look; I guess she's not much of a Doors fan. Or she's still a bit pissy because until about a half hour ago I kept disturbing her and the loud-ish music is just another disturbance to her usual lazy morning routine. That's what she gets for waking me up at 4am barking her foolish furry head off at who knows what. After a poor night's sleep, I gave up trying, poured a cup of coffee and got to work.
I have a million things I want to finish by Friday morning. Except now it's more by the end of today, since I'll be spending most of my time at the shop tomorrow getting maintenance done on my car and a huge cold front is due to come through sometime tomorrow afternoon, so I know by the time I get home, I won't feel like doing much of anything. Why Friday morning (besides it's Memorial Day weekend)? Because it's my next Humira injection. If this one is anything like the next one, I'll pretty much be a useless rag doll until at least Tuesday. I'll be somewhat functional Monday, but the entire weekend is shot--between the dizziness, nausea, achiness--kinda like having the worst flu ever. It's like it takes all the crappy side effects of the medications I'm already on that I barely feel and intensifies them times 1,000 for a few days. Which, apparently is normal for awhile. Don't ask me what awhile is, because even my doctor isn't sure, except if in a few months my overall pain level isn't any less, the medication is a failure.
So what am I paying for? It's been in the low 80s the last few days, so my overall pain levels have been down a bit--okay, so instead of a steady 8-9ish on a scale of 1-10, they've been a 7-8ish, but I'll take it. So I decided I wanted to get a bunch of crap done that has been driving me nuts. Like getting the boxes of Christmas decorations in the attic that have been taking up 2 rooms in the house. I planned it out carefully as to not aggravate my back and shoulder. Of course that all went to hell when I discovered there are wasps living in the attic. My back is fine. My shoulder? It's a bit sorer, but it'll be fine. I did learn I can still shot put--I probably could've launched that box the length of the house if those support beams weren't in the way. :) (I was standing at the base of the ladder at the time because one wasp turned into about 7 or 8 at that point.) I went grocery shopping, did some cleaning... slept like hell. Then was up at 4am today.
Just this morning I've opened a bunch of storm windows, put my winter coats away, moved a few piles of books off my office floor (I WILL have my office at least 90% done or at least the back storage room 100% done by the end of this summer), pulled out my summer sheets and began washing my bedding, did some more light cleaning, and washed some dishes. I know I'm overdoing it. My body is slightly revolting at this point and my brain is screaming at me to knock it off already, but after being so inactive for the last almost 18 months and being in such incredible, unrelenting pain for at least that long, to have that little break brings with it an energy that makes me want to get up and do stuff. Yes, the pain level is still pretty high, but it's amazing what can be blocked out. Until that crash comes because I've overdone it. But I'll deal with paying for it later.
I have a million things I want to finish by Friday morning. Except now it's more by the end of today, since I'll be spending most of my time at the shop tomorrow getting maintenance done on my car and a huge cold front is due to come through sometime tomorrow afternoon, so I know by the time I get home, I won't feel like doing much of anything. Why Friday morning (besides it's Memorial Day weekend)? Because it's my next Humira injection. If this one is anything like the next one, I'll pretty much be a useless rag doll until at least Tuesday. I'll be somewhat functional Monday, but the entire weekend is shot--between the dizziness, nausea, achiness--kinda like having the worst flu ever. It's like it takes all the crappy side effects of the medications I'm already on that I barely feel and intensifies them times 1,000 for a few days. Which, apparently is normal for awhile. Don't ask me what awhile is, because even my doctor isn't sure, except if in a few months my overall pain level isn't any less, the medication is a failure.
So what am I paying for? It's been in the low 80s the last few days, so my overall pain levels have been down a bit--okay, so instead of a steady 8-9ish on a scale of 1-10, they've been a 7-8ish, but I'll take it. So I decided I wanted to get a bunch of crap done that has been driving me nuts. Like getting the boxes of Christmas decorations in the attic that have been taking up 2 rooms in the house. I planned it out carefully as to not aggravate my back and shoulder. Of course that all went to hell when I discovered there are wasps living in the attic. My back is fine. My shoulder? It's a bit sorer, but it'll be fine. I did learn I can still shot put--I probably could've launched that box the length of the house if those support beams weren't in the way. :) (I was standing at the base of the ladder at the time because one wasp turned into about 7 or 8 at that point.) I went grocery shopping, did some cleaning... slept like hell. Then was up at 4am today.
Just this morning I've opened a bunch of storm windows, put my winter coats away, moved a few piles of books off my office floor (I WILL have my office at least 90% done or at least the back storage room 100% done by the end of this summer), pulled out my summer sheets and began washing my bedding, did some more light cleaning, and washed some dishes. I know I'm overdoing it. My body is slightly revolting at this point and my brain is screaming at me to knock it off already, but after being so inactive for the last almost 18 months and being in such incredible, unrelenting pain for at least that long, to have that little break brings with it an energy that makes me want to get up and do stuff. Yes, the pain level is still pretty high, but it's amazing what can be blocked out. Until that crash comes because I've overdone it. But I'll deal with paying for it later.
Friday, May 17, 2013
I Did It!
I don't do needles. Even with my tattoos and after having had my ears pierced multiple times, my tongue pierced for several years, and my navel pierced (all I have left are 2 piercings in each ear and the tats left--I got bored with the rest and removed them. Except the eyebrow. I lost that in a softball incident and chose the sport over risking having it ripped from my eyebrow again). But if you're in a lab coat coming near me with a needle, I freak. I'm not so bad that I scream, cry, or like some people I've heard, pass out. It's more like whimpering, whining, squirming in my chair, cringing, and looking away waiting for it to be over. That includes any form of vaccine. My rational mind knows there's no difference, but still. For the last 18 months, I've had labs done at least once a month; some months two or three times. It still isn't any easier. So when my UCTD began to worsen and evolve into what my rheumatologist believes to be Rheumatoid Arthritis and Lupus and I was sent for a full spinal MRI to look for signs of at least RA (lab tests would be skewed from the anti-rheumatics and immunosuppressants, most likely leading to false negatives except for the climbing inflammation rates), the next step was to add Humira to my ever growing regimen of medications. One little catch: it's a self injectable medication. Awesome.
The good news, at least, is it does come in an injectable pen form, so I don't actually have to see the needle. Naturally, I'm on the higher dose and the more frequent injection--every other week. Many of my friends joked about a pool they had going as to whether I was going to puke, pass out, or go running to my mother to inject me when I had to start it. It was a pretty safe bet any of the above was going to happen, so it was decided that upstairs was the safest place for me. That and there was an excellent chance the side effects were going to be more intense because of my other medications. So my mother and I debated where upstairs as I impatiently waited for my TB test results. I could use her room, since I could keep the dog out and sit on the edge of her bed. That way if I did pass out, the bed was right there, but if I was going to puke, well... that would be a bit of a problem. The bathroom was a better choice because it's smaller and obviously if I did get sick, the toilet (or worst case, the bath tub) was right there. Downside? The bath tub was right there if I passed out and would prove painful. But I chose it anyway, figuring I'd take my chances.
The tests came back negative as expected, I'd start on a Friday since the side effects could last a few days and losing a whole weekend was fine. I do that all the time now because of pain. I psyched myself up, preparing to do this on my own. Then I opened the box and there were these 2 HUGE 3-4" syringes. What.The.Fuck!?!? Totally not the pens I was expecting and nothing like the practice pen I was given! I almost passed out on the kitchen floor!! The pharmacy screwed up and gave me the wrong injection! Of course by this point I can't drive, so I have to wait for my dad to come home from work in a few hours to exchange them. A Xanax later and with the right injection in my hand, I'm sitting there, my thigh prepped, hand shaking, holding the pen in my hand. I can't do it. I can't watch, but I have to, because I have to watch and wait for the indicator to fully show up to let me know it's finished. But I can't. Mom has to. But she can't, because I have to get used to doing this myself. I haven't touched anything, so it's still all sterile. Deep breaths. It only takes about 10 seconds. I can't do this. I have to do this.... It took me 10 minutes to finally inject myself, but I did it. Three times I almost called my mom in there to do it, but I did it. I managed to stay conscious, keep my stomach contents, and resisted the urge to call my mom. So I spent the entire weekend in bed feeling like a rag doll that had been tossed around in a tornado, but by Wednesday afternoon, I was okay. So far, I don't feel any different, except by Sunday I noticed it takes me less than 10 minutes to get out of bed. It normally takes me about 45 minutes because my joints are so stiff. It's a start. It will take months for the medication to fully take effect and hopefully my body will adjust to the injections so I'm not completely down for 3 days and kind of functional for another 2, but I conquered the hardest part--I did it myself. This time. We'll see if I can do it again next week.
The good news, at least, is it does come in an injectable pen form, so I don't actually have to see the needle. Naturally, I'm on the higher dose and the more frequent injection--every other week. Many of my friends joked about a pool they had going as to whether I was going to puke, pass out, or go running to my mother to inject me when I had to start it. It was a pretty safe bet any of the above was going to happen, so it was decided that upstairs was the safest place for me. That and there was an excellent chance the side effects were going to be more intense because of my other medications. So my mother and I debated where upstairs as I impatiently waited for my TB test results. I could use her room, since I could keep the dog out and sit on the edge of her bed. That way if I did pass out, the bed was right there, but if I was going to puke, well... that would be a bit of a problem. The bathroom was a better choice because it's smaller and obviously if I did get sick, the toilet (or worst case, the bath tub) was right there. Downside? The bath tub was right there if I passed out and would prove painful. But I chose it anyway, figuring I'd take my chances.
The tests came back negative as expected, I'd start on a Friday since the side effects could last a few days and losing a whole weekend was fine. I do that all the time now because of pain. I psyched myself up, preparing to do this on my own. Then I opened the box and there were these 2 HUGE 3-4" syringes. What.The.Fuck!?!? Totally not the pens I was expecting and nothing like the practice pen I was given! I almost passed out on the kitchen floor!! The pharmacy screwed up and gave me the wrong injection! Of course by this point I can't drive, so I have to wait for my dad to come home from work in a few hours to exchange them. A Xanax later and with the right injection in my hand, I'm sitting there, my thigh prepped, hand shaking, holding the pen in my hand. I can't do it. I can't watch, but I have to, because I have to watch and wait for the indicator to fully show up to let me know it's finished. But I can't. Mom has to. But she can't, because I have to get used to doing this myself. I haven't touched anything, so it's still all sterile. Deep breaths. It only takes about 10 seconds. I can't do this. I have to do this.... It took me 10 minutes to finally inject myself, but I did it. Three times I almost called my mom in there to do it, but I did it. I managed to stay conscious, keep my stomach contents, and resisted the urge to call my mom. So I spent the entire weekend in bed feeling like a rag doll that had been tossed around in a tornado, but by Wednesday afternoon, I was okay. So far, I don't feel any different, except by Sunday I noticed it takes me less than 10 minutes to get out of bed. It normally takes me about 45 minutes because my joints are so stiff. It's a start. It will take months for the medication to fully take effect and hopefully my body will adjust to the injections so I'm not completely down for 3 days and kind of functional for another 2, but I conquered the hardest part--I did it myself. This time. We'll see if I can do it again next week.
Wednesday, May 1, 2013
April Fools!
Thank God April is over!!! Three MRIs, an X-ray, a mammogram, three doctors appointments, a few serious curveballs, and a massive car repair from hell, it couldn't end fast enough. I got my car back, was screwed over by the junk yard who sold me the "fake" transmission, drained my entire "dammit fund," and was forced to face the reality that I'm not a mechanic anymore. I just have the knowledge of one because I can't physically do the work, even if it's in the driveway or a friend's garage.
But I found out that my UCTD was most likely evolving. Into what? My rheumatologist wasn't (and isn't) sure. She suspects RA and/or lupus at the very least. The problem is because of the medications I'm on now, the tests would be (and are) inconclusive, but the symptoms are there and my inflammation rates are climbing again. So she ordered a STIR sequenced, weighted spinal MRI to look for clues. I should have realized something wasn't right when her office called me to tell me the hospital never scanned my SI joint, but I had asked that I be called with the results they had on my thoracic and lumbar spine at the very least, since it was another three weeks until my appointment. I never received a call. As it turns out, the MRI didn't give any clues as to the direction of my illness, but revealed compression fractures in all of my thoracic vertebrae and all but one lumbar vertebrae. It explains the back pain. But the fractures are all fully healed. I just went numb as she read the results--after she asked me if I had injured my back before because she couldn't believe what she was seeing. I've always been proud of my height. At 5'7, I'm the tallest female (except for one aunt who married into the family) on both sides of my family. I should actually be about 5'8, 5'9! What the fuck? I suppose it's easier to focus on something so stupid as height instead of the fact that there's nothing I can do about the back pain. The damage isn't bad enough right now and surgery isn't an option for at least another decade or two, depending on degeneration.
But at least the mammogram was clean. The X-ray showed no signs of dislocation or fracture, either. Then my rheumatologist reads the MRI report from my shoulder. Nothing torn, no bursitis, tendonitis.. just excessive swelling and fluid. It should go away on its own (it's only been 4 and a half months), but I'm starting another medication, so if that doesn't help, she'll give me a cortisone injection. And I learned a fun fact about my illness: this happened because my joints are already inflamed, so when I fell, it swelled up and got all angry and filled up with fluid. Turns out if I fall or jar a joint, it can happen to any of them. But I'll have to get an MRI to make sure there isn't any damage. Awesome.
Then I get a call from my primary doctor the following day about the MRI telling me that the shoulder is excessively swollen, filled with fluid, the tendons and ligaments are stretched, and there looks to be a small tear. But it doesn't look like I need surgery, only a cortisone injection. So its off to the orthopedist to find out what the hell is going on. Two doctors, same report, same scans, two different opinions.
And while all of this is going on, I'm waiting for my TB test results so I can start a biologic medication. Self injections every 2 weeks. On top of the immunosuppressants. Which would be okay except I HATE needles. And now I'm going to have to give myself a shot every other week. This is going to be interesting.
So yeah... April was all about being stuffed into tubes, exposed to all kinds of radiation, getting the girls squished and squashed, sitting in doctors offices, fighting with a scumbag junkyard owner, and laying out ungodly amounts of money to fix my car. May? May looks like a good month to become a pin cushion. And find out if I have the balls to purposely stab myself with a needle, or if I have to go crying to my mother with my pants around my ankles, making her do it. (Which I'm sure she'll be happy to oblige, if only because she'll get the chance to stab me with a sharp object on purpose.)
But I found out that my UCTD was most likely evolving. Into what? My rheumatologist wasn't (and isn't) sure. She suspects RA and/or lupus at the very least. The problem is because of the medications I'm on now, the tests would be (and are) inconclusive, but the symptoms are there and my inflammation rates are climbing again. So she ordered a STIR sequenced, weighted spinal MRI to look for clues. I should have realized something wasn't right when her office called me to tell me the hospital never scanned my SI joint, but I had asked that I be called with the results they had on my thoracic and lumbar spine at the very least, since it was another three weeks until my appointment. I never received a call. As it turns out, the MRI didn't give any clues as to the direction of my illness, but revealed compression fractures in all of my thoracic vertebrae and all but one lumbar vertebrae. It explains the back pain. But the fractures are all fully healed. I just went numb as she read the results--after she asked me if I had injured my back before because she couldn't believe what she was seeing. I've always been proud of my height. At 5'7, I'm the tallest female (except for one aunt who married into the family) on both sides of my family. I should actually be about 5'8, 5'9! What the fuck? I suppose it's easier to focus on something so stupid as height instead of the fact that there's nothing I can do about the back pain. The damage isn't bad enough right now and surgery isn't an option for at least another decade or two, depending on degeneration.
But at least the mammogram was clean. The X-ray showed no signs of dislocation or fracture, either. Then my rheumatologist reads the MRI report from my shoulder. Nothing torn, no bursitis, tendonitis.. just excessive swelling and fluid. It should go away on its own (it's only been 4 and a half months), but I'm starting another medication, so if that doesn't help, she'll give me a cortisone injection. And I learned a fun fact about my illness: this happened because my joints are already inflamed, so when I fell, it swelled up and got all angry and filled up with fluid. Turns out if I fall or jar a joint, it can happen to any of them. But I'll have to get an MRI to make sure there isn't any damage. Awesome.
Then I get a call from my primary doctor the following day about the MRI telling me that the shoulder is excessively swollen, filled with fluid, the tendons and ligaments are stretched, and there looks to be a small tear. But it doesn't look like I need surgery, only a cortisone injection. So its off to the orthopedist to find out what the hell is going on. Two doctors, same report, same scans, two different opinions.
And while all of this is going on, I'm waiting for my TB test results so I can start a biologic medication. Self injections every 2 weeks. On top of the immunosuppressants. Which would be okay except I HATE needles. And now I'm going to have to give myself a shot every other week. This is going to be interesting.
So yeah... April was all about being stuffed into tubes, exposed to all kinds of radiation, getting the girls squished and squashed, sitting in doctors offices, fighting with a scumbag junkyard owner, and laying out ungodly amounts of money to fix my car. May? May looks like a good month to become a pin cushion. And find out if I have the balls to purposely stab myself with a needle, or if I have to go crying to my mother with my pants around my ankles, making her do it. (Which I'm sure she'll be happy to oblige, if only because she'll get the chance to stab me with a sharp object on purpose.)
Subscribe to:
Posts (Atom)