As usual, things have been a bit chaotic. I've had multiple tests, retests, medications adjusted, changed, stopped, and started. I finally broke down and saw a pulmonary specialist. Luckily, the initial tests, although panic inducing, came back looking pretty good. The doctor did order a blood test unlike one I've never had before and I should be seeing those results when I return to the practice--now that I can reschedule the follow up appointment. After 4 months, I FINALLY got my car back after a major meltdown. The good news is, the repairs were not nearly as expensive as I feared and I had the money put aside to fix it. Unfortunately, there are still a few things left to fix, but my car is safe to drive. I also have to schedule other follow up appointments that have been put on hold because of my car. With exception of my rheumatologist, everything was put on hold; part of it was because the car I was borrowing wasn't comfortable to drive, but the bigger reason was to make sure that I did not accrue any debt until I knew what I owed in repair bills.
Not having a car for a few months proved to be a good thing. It gave me time to think. Over the last few years a lot around the house has been left unattended and let go. Small repairs fell by the wayside, some of the rooms that we use for storage were left to pile up with "stuff." The tough, thorough cleaning didn't get done as often as it used to. So I created list. Room by room, I wrote down the repairs that needed to be done, the overhauling required, etc. And I took that list a step further and broke it down into small, manageable tasks in such a way to ensure that they would get done. I figured I'd start in the worst room that needed the most work--the storage room. We've had Christmas decorations packed up in that room for the past 2 years and there was 4' of junk from one side to the other, except for a few inches in front of the doorway. The bottom of the closet was destroyed, insulation torn apart, light bulbs blown out. Over the last 2 and a half months, nine contractor bags full of trash (now ten), several boxes for donation and counting, and then there was today--starting to fix the closet wall.
In theory, it shouldn't have been too difficult. My mother and I decided to go with a spray insulation instead of buying an entire roll of it. We weren't certain it would work, but worst case scenario, it was a failure and we had to buy a roll of insulation. It sounded insane, but we had several cans of it laying around from another project last fall, so what the hell? Who knew the most difficult project would be in cutting out what was left of the cedar lining on the bottom of the closet. A razor/box cutter didn't work. The cedar paneling was too thick and entirely too hard. A hand saw did not work because the teeth, while almost sharp enough, did not provide enough space to work with, nor did it provide the right angle in which to saw. The Sawzall was missing, so that left the circular saw. Yes, I am fully aware they are generally supposed to be used on vertical surfaces, but unless that cedar could be cut down, no work was going to be done. That's when the real problem began. I've noticed that the biologic I was put on has helped tremendously with joint stiffness and swelling on everything but my hands. The more I use my hands, the more they swell and the stiffer they become. But I was not expecting to have difficulty in using something as easy as that saw. It's quite simple, really, use one finger to push the safety in, another finger to push the trigger, while the other hand grips the guide. Except my hands and fingers were so swollen, stiff, and WEAK that it was extremely difficult to operate the saw, regardless of which hand I used. (I'm ambidextrous.)
I did finally get the job done, including removing the sheetrock and the insulation (which is curing), but it forced me to take a step back and look at what I've been doing and how long I've been doing it. When my hands act up, or begin to "fail," I never realized until today that I compensate by using other muscle groups to accomplish the task at hand. It's a power saw. I've already had to accept that I can no longer be a mechanic, which I still struggle with sometimes. I cannot work. I'm still too sick to return to school. I cannot sit around the house all day reading or watching television. I'm trying to keep myself physically busy as my body permits to take care of what I can, yet I found myself struggling with a basic power saw. There's no other muscle groups to use to get around fingers that won't work. I'll continue over the next several months to finish off my list, but at this rate of degeneration, I honestly don't know how to adapt, deal, or even think about could mean for the future. It's not like a leg, or an arm, or my spine... it's my hands. Maybe RA was taken off the table a little too soon.
Saturday, October 26, 2013
Friday, July 5, 2013
It's a Good Thing My Neighbors Know I'm Nuts
So this week has been, well, interesting. My life is like a deranged sitcom most of the time. I just can't make this shit up. On Monday, I was driving through torrential downpours and flooded roads. The first thing I thought as I pulled out of my driveway was "I'm so glad I put new tires on my car!" Except she started acting up. At first, it felt like there was moisture or water in the gas tank--until the car slipped out of gear into neutral. And I started to panic because I just laid out close to $3,000 to replace the transmission at the end of April. Luckily, it's still under warranty, but still.. could it be failing already!?! Then the real fun began--the shuddering, jerking, slipping out of gear, going into emergency mode (staying in 3rd gear...). Trying to drive an oversized tractor trailer with a bad suspension would've been easier. I run into the building, pick up what I need, get back in the car, and the gear indicator shows that it's in low--while it's in Park. And the battery light's on. The battery light flickers a bit and goes out just before all the gear lights go on along with the check engine light and the car locks in 3rd gear again. I manage to get it out of 3rd gear and the fun begins again. (I still can't believe the possibility of my transmission failing in less than 1,500 miles). I wrangle it to a local garage on Tuesday to get the error codes and I'm given an entire page of them, including what's wrong with my air conditioner. (I found out it didn't work during the first heatwave last summer, but I never use it.) In addition to the transmission problems, the main computer for my transmission isn't communicating with anything, my dashboard cluster isn't communicating with the car, and my airbags aren't communicating, either. Oh, and somehow the fuse for my reverse lights blew. So I'm a little upset and pissed off by the time I get home and as I go to slam the car door, it comes flying back at me--it picks THEN to break, too. SLAM, SLAM, SLAM, SLAM, SLAM!!! It still won't close. Awesome. But I can't bring myself to kick my car. The truth is, I still love my car and I don't want to damage the almost perfect exterior.. so after several more loud profanities, I go get the mail and kick the mailbox. You see, my dad is the original Tim Taylor--the world could fall to pieces and that thing would still be standing. Which is probably a good thing, or I'd be looking for it on the next block. Did I mention all of my neighbors were not only home, but outside during all of this?
So I'm stuck driving mom's car. My dad bought it from a friend of his, who bought it for next to nothing from a college student. A college student who either a) needs serious driving lessons, b) needs to learn the definition of "designated driver", or c) used the car for playing bumper cars. There are dents in every single panel in that car--including the roof and hood. And not the typical door ding type dents. They're pretty good size dents! It doesn't help that dad hit it with the snowblower this winter, either. But I get in the car Wednesday to pick mom up and see her sock monkeys on the passenger seat looking like I caught them in an obscene act. Great. I just chucked them in the back seat and pretended I didn't just see what I just saw. It's bad enough driving that car.. with sock monkeys in it, but fornicating sock monkeys? Then realize dad replaced the rearview mirror with the one from his work truck--which he cracked the mirror. (I don't know how--it's a straight crack down one side, which is oddly fitting considering the rest of the car). The radio doesn't work because the antenna broke, so I have to listen to the only CD in the car. Then I notice that no one cleaned the marinara sauce that exploded last month--so it looks like blood stain splatter. And the steering wheel and control console is sticky. (I don't know with what, but I used a LOT of hand sanitizer). And as if I hadn't used the phrase "What the fuck?" enough that morning, by the time I got to the entrance to my community, I began to notice my arse was wet.. someone left the window open, allowing the seat to absorb the 3"+ of rain we had gotten the previous 48 hours.
So on the 4th, my dad fixed my car door (turns out the interior handle stuck--some mechanic I am), and went to see if he couldn't find some physical evidence of the problem for my car. Ironically, we were supposed to throw a BBQ this weekend, but had to postpone it because of my dad's work schedule. Turns out, my car decided to throw her own little BBQ. The entire wiring harness for the transmission shorted and melted. It's a good thing it was raining, or there's a good thing my car would've gone up in flames.
So I'm stuck driving mom's car. My dad bought it from a friend of his, who bought it for next to nothing from a college student. A college student who either a) needs serious driving lessons, b) needs to learn the definition of "designated driver", or c) used the car for playing bumper cars. There are dents in every single panel in that car--including the roof and hood. And not the typical door ding type dents. They're pretty good size dents! It doesn't help that dad hit it with the snowblower this winter, either. But I get in the car Wednesday to pick mom up and see her sock monkeys on the passenger seat looking like I caught them in an obscene act. Great. I just chucked them in the back seat and pretended I didn't just see what I just saw. It's bad enough driving that car.. with sock monkeys in it, but fornicating sock monkeys? Then realize dad replaced the rearview mirror with the one from his work truck--which he cracked the mirror. (I don't know how--it's a straight crack down one side, which is oddly fitting considering the rest of the car). The radio doesn't work because the antenna broke, so I have to listen to the only CD in the car. Then I notice that no one cleaned the marinara sauce that exploded last month--so it looks like blood stain splatter. And the steering wheel and control console is sticky. (I don't know with what, but I used a LOT of hand sanitizer). And as if I hadn't used the phrase "What the fuck?" enough that morning, by the time I got to the entrance to my community, I began to notice my arse was wet.. someone left the window open, allowing the seat to absorb the 3"+ of rain we had gotten the previous 48 hours.
So on the 4th, my dad fixed my car door (turns out the interior handle stuck--some mechanic I am), and went to see if he couldn't find some physical evidence of the problem for my car. Ironically, we were supposed to throw a BBQ this weekend, but had to postpone it because of my dad's work schedule. Turns out, my car decided to throw her own little BBQ. The entire wiring harness for the transmission shorted and melted. It's a good thing it was raining, or there's a good thing my car would've gone up in flames.
Wednesday, May 29, 2013
Chasing Ghosts
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?
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 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.)
Thursday, April 18, 2013
A Painful Reality Check
Ever since I first got too sick to work about 10 years ago, I never really accepted it. Not very many people know what they want to do "when they grow up" as a kid and don't change their minds. For me, it was to follow in my grandfather's, father's, and uncles' footsteps and become a mechanic. I was only about 4 or 5 when I helped my dad rebuild a 1958 Jaguar. I wasn't boring cylinders, welding, or anything like that, but I learned what tools were what, what they were used for, all about engine components, suspension components, and that getting greasy, oily dirty was WAY more fun than playing in mud. I also learned the proper way to throw a temper tantrum and how to keep my baby doll safe. There's no place safer than in an oil pan full of used motor oil. (After searching for weeks, my father found her when he was emptying it.) My love of cars only grew. I even got a chance to work on a race team for a few years. When I made the official announcement I was going to school for it, I had my mother's and grandfather's full support. My father wasn't surprised, but his biggest reservation was that he didn't want me to wake up one day in my 40s sore, achy, and tired from working my ass off doing such a physical job. It took its toll on the body and he was starting to feel it. My grandfather felt it. It comes with the territory. But I was prepared. I knew what I want and went for it. I was coming from a family of top mechanics. Some of the best in their fields, so I had a lot more pressure should I fail. Turns out, I had nothing to worry about. I worked 10 times harder than my peers to prove I was not only just as good, but better. If I was pushed, I pushed back harder. Sure I put up with a lot. My car was damaged, threats, physical attempts to harm me, death threats, and in one instance, someone put antifreeze in my coffee. But it just made me work harder, through exhaustion, injuries, and pain. I was making a name for myself and climbing fast in the industry. And I was respected by most--the ones who counted. Very few tried to screw me over. It was the hardest thing to have to leave that behind when I got sick. But at least I still had respect and weight in the field.
And in the last week it came crashing down around me. The transmission in my car started to go earlier this year and it turns out it wasn't an easy (yet expensive) fix. I needed to either rebuild or replace it. Naturally, these transmissions are prone to failure, expensive, and difficult to find. After several months of searching, I found 2--one out of state with low mileage, but a few hundred dollars more than I anticipated, and a slightly higher mileage one that was at the very top end of my original purchase budget. I stayed local with the higher mileage one.
It was frustrating enough to be sidelined on this project, but I understand why. It's a very labor intensive job in a large shop full of hazards just begging for me to find a way to injure myself. It's not like slipping on the stairs, or burning myself while cooking. We're talking grease, dirt, etc. The kind of injury that could lead to a serious infection. Then I find out that the salvage yard swapped the transmissions on me for a very high mileage transmission that's beginning to fail with the hopes I wouldn't notice. Why? Well, I'm a woman and my father picked up the part, so I was an easy target to screw over. Then things went to hell from there.
All I wanted was the transmission I ordered and the labor costs back considering I had to pay for 2 transmission installations. What did I get? Condescension and transferred to a local transmission shop to speak to the manager who was even more condescending, trying to tell me the transmission I received didn't have that big of a problem--I could just take my car (or the transmission to him) and he could fix it with no problem. I don't know what I'm talking about. Then it went to the mechanics don't know what their talking about who worked on my car, followed by "then why are you calling me?" Well, I was told to. I ordered and paid for part A which is this year and has this many miles and he gave me part B because he's hoping I'll just keep it. And it gets even better. The transmission I bought turned out to be BROKEN. And all I'm being offered is a full refund of the purchase price with a "we'll work something out" for the labor and fluid costs because I "need to understand how things work in this field" since there isn't another transmission available. Or I keep the wrong one he gave me, fix it, and risk being in the exact same position I'm in now--looking for another used transmission or a $4000 rebuild fee plus installation. Oh yeah, and I don't know what I'm talking about because the guy at the transmission shop he's so desperately trying to get me to do business with says the problem isn't a big one, the mechanics working on my car don't know what they're doing, and I'm just a fucking moron. Every shop I spoke to to double check something, I dealt with a male mechanic who spoke to me like I was an idiot and in some cases was asked if they could speak to my husband or father. So I have no idea when I'm going to get my car back since it makes no sense to put my broken transmission in it and continue to drive it--it barely made it to the garage as it was.
It just finally hit home this week that I'm not that woman anymore. I have no weight in the field. I can't do the work myself, no matter my skills, experience, talent, I'm "that woman" men in the automotive field see as an easy target, except moreso than before because I do need help sometimes. All the work I did to break down walls, open doors, make a name for myself in a field that women weren't accepted in as anything other than service writers, receptionists, and cashiers means nothing. I've officially become an obscure has been. And with my disease progressing, it's forcing me to face some realities I've spent the last decade trying to face a little at a time. So how do you let go of something that was such a huge part of you for 2/3 of your life?
And in the last week it came crashing down around me. The transmission in my car started to go earlier this year and it turns out it wasn't an easy (yet expensive) fix. I needed to either rebuild or replace it. Naturally, these transmissions are prone to failure, expensive, and difficult to find. After several months of searching, I found 2--one out of state with low mileage, but a few hundred dollars more than I anticipated, and a slightly higher mileage one that was at the very top end of my original purchase budget. I stayed local with the higher mileage one.
It was frustrating enough to be sidelined on this project, but I understand why. It's a very labor intensive job in a large shop full of hazards just begging for me to find a way to injure myself. It's not like slipping on the stairs, or burning myself while cooking. We're talking grease, dirt, etc. The kind of injury that could lead to a serious infection. Then I find out that the salvage yard swapped the transmissions on me for a very high mileage transmission that's beginning to fail with the hopes I wouldn't notice. Why? Well, I'm a woman and my father picked up the part, so I was an easy target to screw over. Then things went to hell from there.
All I wanted was the transmission I ordered and the labor costs back considering I had to pay for 2 transmission installations. What did I get? Condescension and transferred to a local transmission shop to speak to the manager who was even more condescending, trying to tell me the transmission I received didn't have that big of a problem--I could just take my car (or the transmission to him) and he could fix it with no problem. I don't know what I'm talking about. Then it went to the mechanics don't know what their talking about who worked on my car, followed by "then why are you calling me?" Well, I was told to. I ordered and paid for part A which is this year and has this many miles and he gave me part B because he's hoping I'll just keep it. And it gets even better. The transmission I bought turned out to be BROKEN. And all I'm being offered is a full refund of the purchase price with a "we'll work something out" for the labor and fluid costs because I "need to understand how things work in this field" since there isn't another transmission available. Or I keep the wrong one he gave me, fix it, and risk being in the exact same position I'm in now--looking for another used transmission or a $4000 rebuild fee plus installation. Oh yeah, and I don't know what I'm talking about because the guy at the transmission shop he's so desperately trying to get me to do business with says the problem isn't a big one, the mechanics working on my car don't know what they're doing, and I'm just a fucking moron. Every shop I spoke to to double check something, I dealt with a male mechanic who spoke to me like I was an idiot and in some cases was asked if they could speak to my husband or father. So I have no idea when I'm going to get my car back since it makes no sense to put my broken transmission in it and continue to drive it--it barely made it to the garage as it was.
It just finally hit home this week that I'm not that woman anymore. I have no weight in the field. I can't do the work myself, no matter my skills, experience, talent, I'm "that woman" men in the automotive field see as an easy target, except moreso than before because I do need help sometimes. All the work I did to break down walls, open doors, make a name for myself in a field that women weren't accepted in as anything other than service writers, receptionists, and cashiers means nothing. I've officially become an obscure has been. And with my disease progressing, it's forcing me to face some realities I've spent the last decade trying to face a little at a time. So how do you let go of something that was such a huge part of you for 2/3 of your life?
Wednesday, April 17, 2013
When I Said Evolution Was Fascinating, This Wasn't What I Had in Mind
So once again, it's been awhile. Part of the reason was writer's block, but mostly it was because as much as things change, they stay the same. I'm essentially a basement dwelling hermit in my parents house. My life consists of doctor's appointments, trips to the grocery store, pharmacy, and occasionally a few other mundane places. Once my symptoms worsened last February/March and I was finally and correctly diagnosed and put on the right treatment by July, I all but shut down. That is except to be angry at the previous specialist who misdiagnosed me for the previous 10 years and at the same time be happy I finally had a concrete, correct diagnosis of UCTD. But of course things change.
The severe swelling has decreased from the Plaquenil (an antimalarial/antirheumatic) to the point that I can wear almost all of my shoes again, wear my rings most days, but most importantly, open my hands back up. The immunosuppressant in combination with it has helped to bring down my SED and C-Reactive protein rates. Except I've had the dosage level on the immunosuppressant raised 4 times now because my inflammation rates are climbing again and my pain levels, once kept to a dull roar, are at a constant scream--including my back and spine. My rheumatologist has even mentioned the word "evolved" during my last visit just before giving me an information booklet for a biologic medication and a script for a full spinal weighted MRI to look for signs of inflammation, degeneration, lesions--anything. (Fun fact: when taking antirheumatics, immunosuppressants, steroids, or any medication to control an autoimmune disease blood test results for specific autoimmune diseases can be very unreliable, as the medication can cause false negatives). In my case, my doctor is suspecting an evolution into rheumatoid arthritis AND lupus right now. Because that's the funny thing about overlap autoimmune diseases: sometimes they never develop into anything if caught early enough and treated (or just never develop if diagnosed late), sometimes with treatment they go into remission, sometimes they develop into only one autoimmune disease, and sometimes they develop into several full autoimmune diseases.
I won't know anything for another few weeks but just knowing that I'm on a higher dose (again) of Imuran (the immunosuppressant) until my next appointment where I will receive my MRI results that will tell me if I have to add a biologic medication to the mix--which I found out is an injection. I don't do needles, yet I might have to learn to inject myself? HA! That should be fun. One of my favorite books might be Darwin's "Theory of Evolution," but I really wish evolution would just stick to the animal world and not the disease world; especially when it comes to autoimmune diseases and my body. I'm pretty sure I have my hands full enough.
The severe swelling has decreased from the Plaquenil (an antimalarial/antirheumatic) to the point that I can wear almost all of my shoes again, wear my rings most days, but most importantly, open my hands back up. The immunosuppressant in combination with it has helped to bring down my SED and C-Reactive protein rates. Except I've had the dosage level on the immunosuppressant raised 4 times now because my inflammation rates are climbing again and my pain levels, once kept to a dull roar, are at a constant scream--including my back and spine. My rheumatologist has even mentioned the word "evolved" during my last visit just before giving me an information booklet for a biologic medication and a script for a full spinal weighted MRI to look for signs of inflammation, degeneration, lesions--anything. (Fun fact: when taking antirheumatics, immunosuppressants, steroids, or any medication to control an autoimmune disease blood test results for specific autoimmune diseases can be very unreliable, as the medication can cause false negatives). In my case, my doctor is suspecting an evolution into rheumatoid arthritis AND lupus right now. Because that's the funny thing about overlap autoimmune diseases: sometimes they never develop into anything if caught early enough and treated (or just never develop if diagnosed late), sometimes with treatment they go into remission, sometimes they develop into only one autoimmune disease, and sometimes they develop into several full autoimmune diseases.
I won't know anything for another few weeks but just knowing that I'm on a higher dose (again) of Imuran (the immunosuppressant) until my next appointment where I will receive my MRI results that will tell me if I have to add a biologic medication to the mix--which I found out is an injection. I don't do needles, yet I might have to learn to inject myself? HA! That should be fun. One of my favorite books might be Darwin's "Theory of Evolution," but I really wish evolution would just stick to the animal world and not the disease world; especially when it comes to autoimmune diseases and my body. I'm pretty sure I have my hands full enough.
Subscribe to:
Posts (Atom)