I try to wake up around the same time every day. It doesn't always work because most nights I spend up all night staring stupidly at the television, the glow in the dark stars on my ceiling, or reading. It's not that I don't want to sleep, it's just that my body and mind have other plans. Some nights it's because my mind won't shut off, others is because I'm in too much pain, it's too hot, it's too cold, too humid, can't get comfortable, or lately it's because a local station that used to play one or two decent shows (re-runs and literally 1 or 2 episodes of a show) a week (I'm not kidding--I'm talking about 2 hours of one show a week, maybe one or 2 B movies, and the rest of the time would be filled by infomercials) now plays hours of awesome television. I'm talking Criminal Minds, Cold Case, Leverage (the one with Timothy Hutton and the super sexy Christian Kane, not the boring Glen Close series), and the drool worthy Flashpoint. And they play 4-8 hour marathons of these shows. Until 2-3am. And it's been well over a year since I've been on a date (my own choice and I don't really want to date right now), but still.. beautiful actors like that are just too difficult to change the channel on, even if I wasn't single. Especially since they're all good guys. And all heroes. But I digress...
I had to break down and call my GP Friday. I've had a sore throat for a few days, but ignored it like I always do. Then I started getting congested and noticed that my lungs were also pretty congested and I was coughing quite a bit, but it wasn't going away; it was getting worse. Normally, I'd ignore it and see what happens. (Re: blow it off as long as possible until either I'm a day before I drive myself to the ER, or I end up in the ER because of an asthma attack I can't get under control and either my bronchitis has already developed into pneumonia, or it's only a matter of hours before it does so). Except I can't do that anymore. Aside from the fact that my immune system doesn't have the superhero powers it used to since my new medication stopped it, there's also a giant warning on the medication to call my doctor at the first sign of infection. But hey, at least my superhero immune system isn't turning it's powers on me as much anymore, either. I did feel like an idiot debating whether I should call the doctor on Thursday because my sinuses and lungs were congested for a few days and I was coughing. That evil "h" word kept creeping into my mind. Yes, I'm supposed to call her at the slightest hint of a cold, infection, blah blah blah. But some sniffles and a cough? Am I overreacting? I don't know. Then I figured I'll take my temperature and call her anyway. I took some Advil 3 hours earlier, but what the hell. 100.2. Whoa... that explains the headache, but I didn't feel quite so stupid calling her anymore. My normal temperature falls somewhere around 97.4, so 100.2 for me is actually kind of high. Certainly didn't take my body long to pick up a bug, now did it? But hey, I didn't hurt myself!
Then I'm sitting there having coffee with mom yesterday and like any other mother/parent, she HATES that I'm sick. Not just the cold thing. The disease. She wishes there was something she could do about it--take my place, find a cure.. something. Anything. I know the feeling, even though I don't have kids of my own. I do have 5 nieces and a nephew, and I did help raise my nephew until he was about three. But there isn't anything I wouldn't do for any of them--especially him. As long as he doesn't puke down my shirt into my bra again. That was the first time I knew what true love was--when you're holding a baby in your lap and he not only pukes on you, but down your shirt, in your bra. And as you hold him out, completely in shock because there was NO warning, you find yourself staring into these huge baby blue eyes and see that he's laughing at you. And you're not mad or upset, but you find yourself laughing hysterically at it. (He's the female version of me.... I feel bad for his mother). But again I digress. As my mom is talking, she explains she realized in a way she is helping me. Kind of. While so far I've managed to avoid injury, she's taking my place on that front: she stubbed her toe pretty fiercely on the kitchen table leg--didn't break it, but it's all kinds of pretty colours--, she scratched her arm on the bushes out front untangling the dog the other day, and has a pretty good-sized hole in her arm from being pounced on by the dog that morning. They were playing and it got a bit crazy. She was trying to keep her quiet and in her room so that I could get some sleep when it happened. Those are the kinds of injuries that would usually happen to me. It's not like she's doing it on purpose. It's just kind of happening that way.
Now if I can just find a way for her to not get hurt and me to keep from getting hurt and neither of us to get sick, even though it's already too late for me at this point this time....I'll figure it out eventually...
Sunday, July 29, 2012
Monday, July 23, 2012
I Think When I Was Warned to Avoid Injury it Wasn't A Challenge
Other than my blog, sometimes I think I should walk around with one of those mini spy cams and talk to myself throughout the day. I just can't make this stuff up. My life would just blow any reality show or sitcom right out of the water. (And may get me arrested if I actually said out loud most of the time some of the things I was thinking...) I'm still getting used to the whole serious life changes/adjustment thing. Not to mention laughing hysterically at the whole "avoid injury" warning that comes with having to take a pretty high dose of Imuran. I mean, you know it's bad when not only your primary doctor (and her staff) laugh at you and ask how well does your rheumatologist really know you, but your pharmacist has the same reaction when he's giving you the required first consult. That's pretty much a giant red flag telling you: a) you're screwed, b) you should start looking online for one of those ginormous inflatable hamster balls for humans, or c) put the ambulance AND your hospital of choice on speed dial. Because getting hurt is pretty much second nature to me. It's not like I wake up in the morning and say to myself "hey! This looks like the perfect day to injure myself!" It just.. well.. happens. A lot. And unless I have no other choice, well, I avoid hospitals and doctors' offices. Yes, they are professionals who have probably heard it all (or close to it), but let's face it. when it comes to injuries, I've found some pretty creative ways to hurt myself by accident.
For example (and this is just one): the first time I was supposed to go horseback riding, I was at my then fiance's father's farm for the weekend in the late fall. It was a few hundred acres, surrounded by woods. He and his father had to take care of some chores, so I figured I'd go wandering through the woods to get some great pictures before my lessons, no big deal, right? Then I found a beautiful doe up the path a way. She knew I was there, but wasn't running away. I decided I wanted to climb a tree to get a better picture. Up the V shaped tree I went, hanging my camera on a branch above me. I grew up climbing trees, so it wasn't like I didn't know what I was doing.. until my leg slipped. And I got stuck. Upside down with my thigh stuck in the V. For 2 hours. Of course my cell phone was back at the house, they were cutting up tree trunks with chain saws, so they couldn't hear me and my leg began to swell. As if to add insult to injury? The doe came right up to me--as I hung helpless, upside down. She stood less than half an inch from my face for what seemed like forever before she sauntered off (probably laughing at me). Me? I did eventually get myself unstuck, but not before I managed to bruise the inside of my thigh from my knee all the way up to.. well.. you know.
Then there was the time I was changing the brake pads on my old car. The caliper bolt was stuck, the guy I was seeing at the time was offering to help me, but I had done the job so many times before (and I'm stubborn like that), I refused to let him help me. Suddenly, the bolt came loose. So did the wrench. And considering I was using my entire body to loosen it when it gave, I ended up smashing my face into the car's fender, not only leaving a good sized dent, I almost gave myself a concussion. After the stars cleared from my vision, I looked up to see that I was flat on my back with him out of swinging distance, laughing his ass off at me. I'm sure it looked pretty funny..
Those are just 2 instances as to how gifted I am. Then today happened. I mentioned yesterday about my car's door. Good news? I didn't melt anything. Bad news? It doesn't always want to close. It requires me using a screwdriver to play with the latch and slamming it a few times, while hoping my mother is far enough out of the way so that I don't hit her. (Because THAT'S not asking for a way for me to get hurt, right?) Hopefully, it'll be fixed by the end of this week. So, for now, My mom gets to be driven around like Miss Daisy because after 3 times of dealing with the door and tempting fate, I'm not touching that handle until it's fixed. But the day gets better!! Did I also mention the part about avoiding germs as much as possible, too? Yeah. I'm supposed to try to avoid germs too while on Imuran.
It turns out my dog doesn't like the rain. And when we get pouring rain like we did at the end of last week, she does her business on our sidewalk and front deck to avoid the rain. (Easy enough to avoid, but still... looks like my dad will be out there with bleach and a hose, unless I can find a HazMat suit). Her other gift? She loves to get tangled in the bushes in front of the house. Which would be fine, since most of the time she's smart enough to either untangle herself, or follow directions to untangle herself. Not today! She has either chewed back most of the bottom branches of the bushes, or broken them off (sharp pointy things!! Not good for me!) Another thing? Ticks are really bad this year and Lyme Disease as well as other tick born illnesses are off the charts. So naturally she's playing stupid as I'm trying to avoid dog crap and pull her leash while avoiding going near the bushes. As if to add insult to injury to my morning--did I mention it's still not even 11am yet? Oh. Yeah. It's not even 11am yet. There's obviously a hornet's nest nearby as I'm noticing the black and white predators slowly buzzing about. And I'm not talking just one or two... In less than 5 minutes, I've spotted at least 6. And there's just soooo many ways one tangled dog in a bush surrounded by sharp, broken branches, near ticks, in front of a porch that has dog crap on it, obviously near a hornet's nest can go wrong when the person trying to unstick the dog is not supposed to be exposed to germs OR get hurt. Oh yeah.. and my dog LOVES to dig holes.. so going out in the yard also means dodging more mutt patties and holes bigger than the 50lb mutt herself. Add that to the car with the door that doesn't want to stay shut (and the transmission that acted up again until I called the mechanic--of course). I had to have my mother get the dog because I finally lost it. I couldn't stop laughing. My rheumatologist tells me I need to try to avoid germs and I HAVE to avoid situations where I can get hurt (obviously injuries are going to happen, but some can be avoided--maybe), but since I was told to avoid getting hurt, I have found myself in more situations that can land me in an ER without even trying. This disease will never kill me. The treatment certainly won't. But that warning? That warning will. Tell the world's biggest klutz to avoid injury and it's like the cosmos and every God and Goddess are laying out every possible trap just to see what happens. It's the only logical explanation I can think of. Friday? My dog fell down the stairs while I was at the bottom, sending five- 1 gallon water jugs flying at me. She ran up the stairs at my mom, slammed head first into the doorway, and bounced backwards. How does that happen?
This is the kind of stuff you see on television sitcoms, or read in books. Not real life. Yet, there it is. Again. And again in my life. Why? Because it's my life. I just can't make this up if I tried. And this is the kind of stuff that happens to me all. the. time. Like they don't already know I don't need help finding a way to hurt myself. I have plenty of scars to prove it. Not to mention the arthritis from all the broken bones...
For example (and this is just one): the first time I was supposed to go horseback riding, I was at my then fiance's father's farm for the weekend in the late fall. It was a few hundred acres, surrounded by woods. He and his father had to take care of some chores, so I figured I'd go wandering through the woods to get some great pictures before my lessons, no big deal, right? Then I found a beautiful doe up the path a way. She knew I was there, but wasn't running away. I decided I wanted to climb a tree to get a better picture. Up the V shaped tree I went, hanging my camera on a branch above me. I grew up climbing trees, so it wasn't like I didn't know what I was doing.. until my leg slipped. And I got stuck. Upside down with my thigh stuck in the V. For 2 hours. Of course my cell phone was back at the house, they were cutting up tree trunks with chain saws, so they couldn't hear me and my leg began to swell. As if to add insult to injury? The doe came right up to me--as I hung helpless, upside down. She stood less than half an inch from my face for what seemed like forever before she sauntered off (probably laughing at me). Me? I did eventually get myself unstuck, but not before I managed to bruise the inside of my thigh from my knee all the way up to.. well.. you know.
Then there was the time I was changing the brake pads on my old car. The caliper bolt was stuck, the guy I was seeing at the time was offering to help me, but I had done the job so many times before (and I'm stubborn like that), I refused to let him help me. Suddenly, the bolt came loose. So did the wrench. And considering I was using my entire body to loosen it when it gave, I ended up smashing my face into the car's fender, not only leaving a good sized dent, I almost gave myself a concussion. After the stars cleared from my vision, I looked up to see that I was flat on my back with him out of swinging distance, laughing his ass off at me. I'm sure it looked pretty funny..
Those are just 2 instances as to how gifted I am. Then today happened. I mentioned yesterday about my car's door. Good news? I didn't melt anything. Bad news? It doesn't always want to close. It requires me using a screwdriver to play with the latch and slamming it a few times, while hoping my mother is far enough out of the way so that I don't hit her. (Because THAT'S not asking for a way for me to get hurt, right?) Hopefully, it'll be fixed by the end of this week. So, for now, My mom gets to be driven around like Miss Daisy because after 3 times of dealing with the door and tempting fate, I'm not touching that handle until it's fixed. But the day gets better!! Did I also mention the part about avoiding germs as much as possible, too? Yeah. I'm supposed to try to avoid germs too while on Imuran.
It turns out my dog doesn't like the rain. And when we get pouring rain like we did at the end of last week, she does her business on our sidewalk and front deck to avoid the rain. (Easy enough to avoid, but still... looks like my dad will be out there with bleach and a hose, unless I can find a HazMat suit). Her other gift? She loves to get tangled in the bushes in front of the house. Which would be fine, since most of the time she's smart enough to either untangle herself, or follow directions to untangle herself. Not today! She has either chewed back most of the bottom branches of the bushes, or broken them off (sharp pointy things!! Not good for me!) Another thing? Ticks are really bad this year and Lyme Disease as well as other tick born illnesses are off the charts. So naturally she's playing stupid as I'm trying to avoid dog crap and pull her leash while avoiding going near the bushes. As if to add insult to injury to my morning--did I mention it's still not even 11am yet? Oh. Yeah. It's not even 11am yet. There's obviously a hornet's nest nearby as I'm noticing the black and white predators slowly buzzing about. And I'm not talking just one or two... In less than 5 minutes, I've spotted at least 6. And there's just soooo many ways one tangled dog in a bush surrounded by sharp, broken branches, near ticks, in front of a porch that has dog crap on it, obviously near a hornet's nest can go wrong when the person trying to unstick the dog is not supposed to be exposed to germs OR get hurt. Oh yeah.. and my dog LOVES to dig holes.. so going out in the yard also means dodging more mutt patties and holes bigger than the 50lb mutt herself. Add that to the car with the door that doesn't want to stay shut (and the transmission that acted up again until I called the mechanic--of course). I had to have my mother get the dog because I finally lost it. I couldn't stop laughing. My rheumatologist tells me I need to try to avoid germs and I HAVE to avoid situations where I can get hurt (obviously injuries are going to happen, but some can be avoided--maybe), but since I was told to avoid getting hurt, I have found myself in more situations that can land me in an ER without even trying. This disease will never kill me. The treatment certainly won't. But that warning? That warning will. Tell the world's biggest klutz to avoid injury and it's like the cosmos and every God and Goddess are laying out every possible trap just to see what happens. It's the only logical explanation I can think of. Friday? My dog fell down the stairs while I was at the bottom, sending five- 1 gallon water jugs flying at me. She ran up the stairs at my mom, slammed head first into the doorway, and bounced backwards. How does that happen?
This is the kind of stuff you see on television sitcoms, or read in books. Not real life. Yet, there it is. Again. And again in my life. Why? Because it's my life. I just can't make this up if I tried. And this is the kind of stuff that happens to me all. the. time. Like they don't already know I don't need help finding a way to hurt myself. I have plenty of scars to prove it. Not to mention the arthritis from all the broken bones...
Sunday, July 22, 2012
Victory!! Almost.
What if I can't do this? Yes, I'm going to get dirty, but I don't care. I have at least 2 pairs of nitrile gloves if I really need them, but all I should need is one. If I get that far. It was hard enough having to give up the uniform. Giving up the career. The bullshit. Yes, I miss the bullshit. "But, you're a girl!" "Yeah, and?" I knew what I was doing. In most cases, more than my male counterparts. I also had to stay on my toes. I mean, I did have tools thrown at my face, my fair share of fist fights (not started by me, just ended by me), shattered windshields, ruined lunches, destroyed clothes, and there was that one serious attempt on my life (not kidding--antifreeze in coffee would have been fatal if I wasn't paying attention). But there were the days I could still fix my car. At least when it was something serious enough that I couldn't rig it with duct tape, coat hangers, gorilla glue, or other creative means. The jobs did take a bit longer than they used to, but they got done. And it was at least something. Hell, I was only 5 years old when I helped rebuild my first car. And I never looked back. Until yesterday.
My personal record is 3 minutes. Driver's side? 5 minutes. That's how long it takes to change a headlight in my car. The driver's side takes a bit longer because I have to move the air filter box and pull off the battery cover. The headlight has to be unlocked and a lever has to be pushed down (but not too hard, because if it breaks, the headlight won't lock back in place) so that the entire headlight comes out.. then I have to take the back cover off the light, unclip the bulb (which requires pliers), unplug the bulb, put the new one in (did I mention having to put gloves on for this part? You can't touch the bulbs at all, because the oils on your skin can cause the bulbs will explode.. fun, huh?), and put everything back together. It's a bit tedious, but considering I find myself having to replace them every summer, I have it down to a science. Until yesterday. Until this disease took even that away from me. My fingers and hands are still very swollen and stiff. They're also weak and shaky, not to mention painful. I didn't know if I could even change the bulb this time. I knew my 5 minute record was out the window. I stopped timing myself after an hour. But I was doing it. And I finally did it. My hands swelled so bad, the gloves became a second skin. Every joint and muscle screamed at me, but I actually did it. I took my time putting my tools away, proud of myself that at least yesterday I had one part of my "old life" I still had--at least then. I don't know if I could change a flat tire, but hey, I could still change a headlight, right?
Then I went to close the door and lock my car up. And the door wouldn't close. The handle wasn't stuck, it was unlocked, but the latch was stuck and wouldn't catch. Of course... My car has been doing nothing but giving me trouble for the past 2 weeks--I see my mechanic for work I can't do on my own, bring it in for a transmission problem, only to get there and it works fine. Every time. And of course I couldn't find the WD-40.. or anything like it (well, I could, but nothing had a cap on it.) The only thing I could find was some industrial strength metal lube spray that has more warnings on it than my college chemistry lab. Use in open areas, use masks, gloves, can cause CNS damage, brain damage, liver damage... you name it, it can cause it. But hey, it should free up my door, right? It worked. I think. The latch did free up and the door closed. I don't feel any different. And hopefully the door will open and close right, but I have no clue what the stuff is supposed to be used on (it was in my dad's work truck and he works on industrial equipment), but I do have a small bungee cord in my car as a backup plan just in case I may have melted everything that's not metal in the door (which, considering the 5,000 warnings on the can, is entirely possible) and the door doesn't want to close again. Or, well, open for that matter. But I was just in entirely too much pain, too tired, and by that point, it was either put my foot through the door out of anger and pay for body work I can't afford plus the cost to fix the stupid door, or risk melting the door and sealing it shut semi-permanently. So, I fell back on what I knew and hoped for the best. I guess I'll find out tomorrow. Worst case? There'll be a size 9 foot print in the door...
My personal record is 3 minutes. Driver's side? 5 minutes. That's how long it takes to change a headlight in my car. The driver's side takes a bit longer because I have to move the air filter box and pull off the battery cover. The headlight has to be unlocked and a lever has to be pushed down (but not too hard, because if it breaks, the headlight won't lock back in place) so that the entire headlight comes out.. then I have to take the back cover off the light, unclip the bulb (which requires pliers), unplug the bulb, put the new one in (did I mention having to put gloves on for this part? You can't touch the bulbs at all, because the oils on your skin can cause the bulbs will explode.. fun, huh?), and put everything back together. It's a bit tedious, but considering I find myself having to replace them every summer, I have it down to a science. Until yesterday. Until this disease took even that away from me. My fingers and hands are still very swollen and stiff. They're also weak and shaky, not to mention painful. I didn't know if I could even change the bulb this time. I knew my 5 minute record was out the window. I stopped timing myself after an hour. But I was doing it. And I finally did it. My hands swelled so bad, the gloves became a second skin. Every joint and muscle screamed at me, but I actually did it. I took my time putting my tools away, proud of myself that at least yesterday I had one part of my "old life" I still had--at least then. I don't know if I could change a flat tire, but hey, I could still change a headlight, right?
Then I went to close the door and lock my car up. And the door wouldn't close. The handle wasn't stuck, it was unlocked, but the latch was stuck and wouldn't catch. Of course... My car has been doing nothing but giving me trouble for the past 2 weeks--I see my mechanic for work I can't do on my own, bring it in for a transmission problem, only to get there and it works fine. Every time. And of course I couldn't find the WD-40.. or anything like it (well, I could, but nothing had a cap on it.) The only thing I could find was some industrial strength metal lube spray that has more warnings on it than my college chemistry lab. Use in open areas, use masks, gloves, can cause CNS damage, brain damage, liver damage... you name it, it can cause it. But hey, it should free up my door, right? It worked. I think. The latch did free up and the door closed. I don't feel any different. And hopefully the door will open and close right, but I have no clue what the stuff is supposed to be used on (it was in my dad's work truck and he works on industrial equipment), but I do have a small bungee cord in my car as a backup plan just in case I may have melted everything that's not metal in the door (which, considering the 5,000 warnings on the can, is entirely possible) and the door doesn't want to close again. Or, well, open for that matter. But I was just in entirely too much pain, too tired, and by that point, it was either put my foot through the door out of anger and pay for body work I can't afford plus the cost to fix the stupid door, or risk melting the door and sealing it shut semi-permanently. So, I fell back on what I knew and hoped for the best. I guess I'll find out tomorrow. Worst case? There'll be a size 9 foot print in the door...
Thursday, July 19, 2012
Another Learning Curve
Life is funny. And hard. And scary as hell. And it doesn't always go the way you want it to. I had plans, and backup plans, and back up plans for the backup plans. And somehow, it all went to hell anyway. It wasn't anything I did. It was taken out of my control. But how I handled it all was in my control. I admit that there's some things I could have handled better, but fear has a funny way of skewing things. So does anger. And now? Now comes some of the hardest changes, hardest decisions because there are a lot of unknowns coming. And with unknowns come fear.
I had to make the choice this week about returning to school in the upcoming fall semester. Most of me wanted to. I finally received a diagnosis, I started treatment last week, and well, I was told by an administrator that I couldn't do it because I was sick. And that chronic illness and education couldn't be balanced because the end result never works out well. And I've always been the type of person that if you tell me I can't do something because of who I am, I'll do it to prove you wrong out of spite. I'm just that stubborn and determined. By not returning, I felt like I would be admitting failure, and admitting that the administrator was right. Except I know he's not. The truth is, I have to make some serious lifestyle changes. I also don't know how the new medication is going to affect me, if it's going to work, or if I'm going to have to change treatments mid-semester. I also don't know how I'm going to respond to treatment--if I'm going to feel any better, what to expect... anything. And, of course, adjusting emotionally and physically to this "new life." I decided that after four semester attempts that ended in either full or partial medical withdrawals before taking a leave of absence, I would remain on leave. It was far from an easy decision. School gives me something to do than rattle around the house coming up with a million and one projects--stuff that has to be fixed, ideas to redecorate or update, stupid arguments with mom.... I interact with other people, stimulate my brain in different and challenging settings...I miss it. Not to mention that it's a serious goal of mine. I want a Master's Degree. I'm over halfway towards a Bachelor's Degree. I know I may never be able to work, but it's a goal I intend to finish. I just know I need the extra few months to adjust to the transition without the added stress of homework and dealing with a university that doesn't understand how to accommodate a student with a chronic illness--especially an autoimmune disease.
I can say this about my choice. It sucked. It was hard. And while I know I made the right decision, it doesn't make it any easier. I guess this is just one of many difficult choices I have to start making from now on. It doesn't mean that I can't reach my goals, but it means that many of my goals are going to be like my life thus far: full of detours, speed bumps, road blocks, and scenic routes.
I had to make the choice this week about returning to school in the upcoming fall semester. Most of me wanted to. I finally received a diagnosis, I started treatment last week, and well, I was told by an administrator that I couldn't do it because I was sick. And that chronic illness and education couldn't be balanced because the end result never works out well. And I've always been the type of person that if you tell me I can't do something because of who I am, I'll do it to prove you wrong out of spite. I'm just that stubborn and determined. By not returning, I felt like I would be admitting failure, and admitting that the administrator was right. Except I know he's not. The truth is, I have to make some serious lifestyle changes. I also don't know how the new medication is going to affect me, if it's going to work, or if I'm going to have to change treatments mid-semester. I also don't know how I'm going to respond to treatment--if I'm going to feel any better, what to expect... anything. And, of course, adjusting emotionally and physically to this "new life." I decided that after four semester attempts that ended in either full or partial medical withdrawals before taking a leave of absence, I would remain on leave. It was far from an easy decision. School gives me something to do than rattle around the house coming up with a million and one projects--stuff that has to be fixed, ideas to redecorate or update, stupid arguments with mom.... I interact with other people, stimulate my brain in different and challenging settings...I miss it. Not to mention that it's a serious goal of mine. I want a Master's Degree. I'm over halfway towards a Bachelor's Degree. I know I may never be able to work, but it's a goal I intend to finish. I just know I need the extra few months to adjust to the transition without the added stress of homework and dealing with a university that doesn't understand how to accommodate a student with a chronic illness--especially an autoimmune disease.
I can say this about my choice. It sucked. It was hard. And while I know I made the right decision, it doesn't make it any easier. I guess this is just one of many difficult choices I have to start making from now on. It doesn't mean that I can't reach my goals, but it means that many of my goals are going to be like my life thus far: full of detours, speed bumps, road blocks, and scenic routes.
Monday, July 16, 2012
A Few Basics--And A Thank You
I cannot believe just how many amazing people are there for me. I knew I wasn't alone when this last flare started, I began setting records for not only the number of doctor referrals I was given, doctors I had seen, appointments I had, tests I was given (lab tests, imaging scans, you name it, it was either suggested, or I had it done), diagnoses put on the table and crossed off the list, and my health got worse--again. What I had no idea was just how many people were there. As my new specialist got closer to a diagnosis, some people disappeared (which I expected to happen--it usually does when a person gets sick or sicker and doesn't have the time to do things for a certain kind of person), but others came closer and really reached out. Many to my surprise. Then the diagnosis came, the tests started to find out about treatment, and reality started to sink in and even more family, friends, and loved ones reached out. I honestly don't have the words to thank everyone enough or how I feel for what they've done. For being there, their prayers, positive energy, encouragement, and putting up with my temporary insanity while I adjust to all of this (mostly the medication and all of the warnings, precautions, and changes that come with the treatment).
But there are a few things that some need to understand. First of all, this disease is real. I've had it for at least the last decade, if not longer. It was never Fibromyalgia, I was never faking anything, being over dramatic, nothing. I was misdiagnosed. Laziness had nothing to do with it. Still don't believe me? Not my problem--go crawl in a hole somewhere, drive off into the sunset, do what you want, but stay out of my life, forget I exist, do whatever you want; I'm done with you.
I'm in pain. Every day, all day. I have been my entire life. It wasn't until a decade ago that it got to the point that I couldn't work because of it. And it got worse from there. Now I have 3 different medications to control it: Advil and 2 narcotics. Some days are better than others. Some days I can't even get out of bed it's so bad. It's something I can't control, but it's not like I don't fight it. Nothing changes that fact. All I can do is continue to fight it and see how I respond to treatment. Hot baths, heating pads, ice packs, "getting out more," losing weight, and a thousand suggestions won't make it stop. It's from the disease. I know most people mean well, but it is what it is. I've accepted that.
Like every other autoimmune disease, mine has no cure. Only treatment. And like many, steroids is one option. Except my last specialist tried steroids to treat pain flares and they didn't really work, except to worsen my vitamin deficiencies, cause some kidney damage, and higher cholesterol. Which means that my current specialist was left to try immunosuppressants. Also because I'm at the very least 10 years behind the ball in getting a proper diagnosis. So I'm on a higher dose right now.
What does THAT mean? A lot. It means I have to make serious changes in my life. I have to be conscious about germs, cleanliness, injury... It's not where cleanliness or germs wasn't something I wasn't mindful of before, but I have to be very vigilant now. (Think military clean and germophobe). And injury? Never gave it much thought. Now I have to think hand sanitizer, surgical masks, rubber gloves, all possible ways I can possibly injure myself. And what happens if I do get injured? What exactly constitutes and injury? A paper cut? Bruise? So I'm a bit of a neurotic, emotional, anxiety riddled mess and probably will be for awhile. Not to mention I have no idea how the treatment is going to work. If I'm going to start feeling better, or if this is as good as it gets. My doctor doesn't even know. But those are the basics of it.. or at least a few of them.
I know many things are said to make me feel better, or out of the need to say something to show support and I love that there are so many awesome people there for me. And I am not only incredibly thankful, grateful, and blessed for that, but I also want to use this to help raise awareness of autoimmune disorders (and my own disease). I will fight this. I may not have a clue what's going to happen, or where this is going to take me, but knowing how many people are there for me right now (and knowing those same people aren't going anywhere) is what's going to keep me fighting this no matter what happens next.
But there are a few things that some need to understand. First of all, this disease is real. I've had it for at least the last decade, if not longer. It was never Fibromyalgia, I was never faking anything, being over dramatic, nothing. I was misdiagnosed. Laziness had nothing to do with it. Still don't believe me? Not my problem--go crawl in a hole somewhere, drive off into the sunset, do what you want, but stay out of my life, forget I exist, do whatever you want; I'm done with you.
I'm in pain. Every day, all day. I have been my entire life. It wasn't until a decade ago that it got to the point that I couldn't work because of it. And it got worse from there. Now I have 3 different medications to control it: Advil and 2 narcotics. Some days are better than others. Some days I can't even get out of bed it's so bad. It's something I can't control, but it's not like I don't fight it. Nothing changes that fact. All I can do is continue to fight it and see how I respond to treatment. Hot baths, heating pads, ice packs, "getting out more," losing weight, and a thousand suggestions won't make it stop. It's from the disease. I know most people mean well, but it is what it is. I've accepted that.
Like every other autoimmune disease, mine has no cure. Only treatment. And like many, steroids is one option. Except my last specialist tried steroids to treat pain flares and they didn't really work, except to worsen my vitamin deficiencies, cause some kidney damage, and higher cholesterol. Which means that my current specialist was left to try immunosuppressants. Also because I'm at the very least 10 years behind the ball in getting a proper diagnosis. So I'm on a higher dose right now.
What does THAT mean? A lot. It means I have to make serious changes in my life. I have to be conscious about germs, cleanliness, injury... It's not where cleanliness or germs wasn't something I wasn't mindful of before, but I have to be very vigilant now. (Think military clean and germophobe). And injury? Never gave it much thought. Now I have to think hand sanitizer, surgical masks, rubber gloves, all possible ways I can possibly injure myself. And what happens if I do get injured? What exactly constitutes and injury? A paper cut? Bruise? So I'm a bit of a neurotic, emotional, anxiety riddled mess and probably will be for awhile. Not to mention I have no idea how the treatment is going to work. If I'm going to start feeling better, or if this is as good as it gets. My doctor doesn't even know. But those are the basics of it.. or at least a few of them.
I know many things are said to make me feel better, or out of the need to say something to show support and I love that there are so many awesome people there for me. And I am not only incredibly thankful, grateful, and blessed for that, but I also want to use this to help raise awareness of autoimmune disorders (and my own disease). I will fight this. I may not have a clue what's going to happen, or where this is going to take me, but knowing how many people are there for me right now (and knowing those same people aren't going anywhere) is what's going to keep me fighting this no matter what happens next.
Friday, July 13, 2012
THAT...Was a Warning I Never Saw Coming
Last night I wrote about the reality of the whole actually having an autoimmune disease/diagnosis/starting treatment thing and the difference between being told about having been misdiagnosed, being properly diagnosed, treatment, what to expect during treatment, and the hundreds of possible side effects and precautions of treatments (including having to become a germophobe) and the reality of all of that actually hitting home. It's still sinking in. And today it sank in a bit more because I had to pick up the Imuran from the pharmacy. With the first pick up comes a consult with the pharmacist in charge. Most of it is the same thing I heard from my doctor: special precautions about germs, avoiding infections, live vaccines, what to do should I become sick... but it will take about two weeks before I actually have to worry about all of that fun stuff. It's just a good practice to get into now. And of course a brief coverage of the 5 pages of warnings that come with the drug--from the possibility of it causing lymphoma, the regular lab tests, side effects, etc. (All kinds of seriously scary stuff...) Then came the 10 ton Acme cartoon safe (which he told me to read when I got home), proving just how little my doctor truly knows about me.
At the end of the precautions/warnings is a funny little warning: "Avoid sharp objects, contact sports, or any situation that you could knowingly become injured." Really? Me? A walking clusterf*ck. Contact sports are pretty easy to avoid right now because my energy and mobility aren't anywhere near what they used to be. Sharp objects? Are forks included in that? Staplers? What am I, a newborn? And there's the "any situation" part. Does my doctor realize just how truly gifted I am? I gave myself whiplash in the shower!! I tore my meniscus chucking a treat at my dog! If you can think of it, odds are, I've probably managed to find a way to hurt myself doing it. I'm just glad in 3 weeks I will have been one year sober. (Which at least takes some of the danger out it.. some, but nearly not enough) At least for a little while my mom and I had a great laugh at this warning. Even better because we still have my nephew's old baby/toddler tableware. Most of it is Winnie the Pooh. And laughed even harder at some of the memories of just how many ways I have so giftedly hurt myself. Stairs, doorjambs, tripping over my own feet, falling out of or off of furniture (when I haven't missed it entirely, stapling myself to stuff, attacked by things falling out of cabinets and closets.. the list is pretty long. Hell, I fell down my basement stairs just last week...again.
But I have been trying to stay positive. It has its moments. Until the eggsplosion. All I did was open the fridge to get my iced tea and a dozen eggs fell out. All over the bottom of the fridge, the slate floor, and my feet. Granted, today is the first day on the Imuran, but I still freaked. Normally I'd get pissed off because of the mess (which I did to a point), but raw eggs have germs and diseases--LOTS of them. And the mess was everywhere, including on me. It wasn't pretty. I know this is going to take awhile to adjust to, but I never expected this. I never expected to be that afraid of a broken raw egg, or realize how dangerous something like a paper cut might be, let alone a small cold. And it's going to be a HUGE adjustment. But at least I can say I didn't try to warn the doctor about my many accidents. And I refuse to use kiddie utensils--no matter how cute a pink, plastic Piglet knife and fork set is. Although I may not be beyond using the metal Eeyore and Piglet sets..
At the end of the precautions/warnings is a funny little warning: "Avoid sharp objects, contact sports, or any situation that you could knowingly become injured." Really? Me? A walking clusterf*ck. Contact sports are pretty easy to avoid right now because my energy and mobility aren't anywhere near what they used to be. Sharp objects? Are forks included in that? Staplers? What am I, a newborn? And there's the "any situation" part. Does my doctor realize just how truly gifted I am? I gave myself whiplash in the shower!! I tore my meniscus chucking a treat at my dog! If you can think of it, odds are, I've probably managed to find a way to hurt myself doing it. I'm just glad in 3 weeks I will have been one year sober. (Which at least takes some of the danger out it.. some, but nearly not enough) At least for a little while my mom and I had a great laugh at this warning. Even better because we still have my nephew's old baby/toddler tableware. Most of it is Winnie the Pooh. And laughed even harder at some of the memories of just how many ways I have so giftedly hurt myself. Stairs, doorjambs, tripping over my own feet, falling out of or off of furniture (when I haven't missed it entirely, stapling myself to stuff, attacked by things falling out of cabinets and closets.. the list is pretty long. Hell, I fell down my basement stairs just last week...again.
But I have been trying to stay positive. It has its moments. Until the eggsplosion. All I did was open the fridge to get my iced tea and a dozen eggs fell out. All over the bottom of the fridge, the slate floor, and my feet. Granted, today is the first day on the Imuran, but I still freaked. Normally I'd get pissed off because of the mess (which I did to a point), but raw eggs have germs and diseases--LOTS of them. And the mess was everywhere, including on me. It wasn't pretty. I know this is going to take awhile to adjust to, but I never expected this. I never expected to be that afraid of a broken raw egg, or realize how dangerous something like a paper cut might be, let alone a small cold. And it's going to be a HUGE adjustment. But at least I can say I didn't try to warn the doctor about my many accidents. And I refuse to use kiddie utensils--no matter how cute a pink, plastic Piglet knife and fork set is. Although I may not be beyond using the metal Eeyore and Piglet sets..
Thursday, July 12, 2012
When Reality Starts to Settle In
It's one thing to know you're sick. To know your doctor is wrong. Then comes the moment when you finally find out that you find out that you were right and the tests begin and you're back in a holding pattern, waiting to find out what is wrong. Until you get a diagnosis and all the pieces finally fit together. For awhile, it feels unreal, but more than anything else, you feel relieved.
I knew after this last flare started again and I was finally diagnosed with MCTD, I was going to have to change a lot of things. I was going to have to start over in a lot of ways because a lot of damage had been done, I have a 10 year disadvantage, steroids had failed (I was put on prednisone, medrol, and cortisone over the past decade and while it didn't quite work, it didn't entirely fail...it just slowed the progress a bit). But more than anything, it just didn't feel real. Until the past few days.
I discovered a new symptom--I hate the sun. Well, I don't, my body does. Even with a high SPF sunscreen, in less than 5 minutes it feels like someone is throwing acid on my skin. It turns out it's not the result of my medication, but it's the disease and the only thing I can do is wear sunscreen and cover up as much as I can when I am out in the sun. Then I finally got my test results to find out if I can start the immunosuppressant Imuran--I start tomorrow. And I start a very high dose--with a LOT of warnings and precautions. Basically, I have to become a germophobe because if I catch even a common cold, I can end up in the hospital. Granted, I knew all of this weeks ago, but I'm just starting to realize it now.
And it's not only unsettling, it's scary. It's one thing to know something, but something totally different to realize it. I've learned to find the upside of things. If I can't? I find something to laugh about. I mean, my mother and I almost got kicked out of a hospital waiting room because she's on dialysis, I'm a perfect match, but can't donate, and we came up with the idea that I would donate one of my kidneys, go in for the fistula surgery (since my own creatinine levels have been slowly rising), and when my one kidney started to fail, she'd loan it back to me. And we'd go back and forth, depending on our financial situations at the time. Granted, it's not really funny, but we had everything worked out down to the last detail, and found it hysterical. Even funnier? While we hatched our insane plan, my father was in an OR with his chest cracked open having major heart surgery. That's just how we deal with things. Find an upside, or find something outrageously inappropriate and laugh about it. Except I'm still trying to find a way to do either right now. Except maybe I haven't been told I have to quit smoking because every imaging scan I was given showed that my lungs are clear (even though I have asthma and COPD).
Now I'm starting to realize that "normal" will no longer exist. Well, there will be a "normal" for me, but it won't be close to what other people define as normal. I just have no idea what it will be. Will it continue to be this constant horrible pain? Will the pain be worse? Will it be better? Will my range of motion/mobility get better with treatment? I've already lost 60lbs, even though I've only dropped one size (the joint and lymph node swelling has a lot to do with that). I was already warned about sanitizer, germ masks in certain situations, precautions... but what will it be?
I knew after this last flare started again and I was finally diagnosed with MCTD, I was going to have to change a lot of things. I was going to have to start over in a lot of ways because a lot of damage had been done, I have a 10 year disadvantage, steroids had failed (I was put on prednisone, medrol, and cortisone over the past decade and while it didn't quite work, it didn't entirely fail...it just slowed the progress a bit). But more than anything, it just didn't feel real. Until the past few days.
I discovered a new symptom--I hate the sun. Well, I don't, my body does. Even with a high SPF sunscreen, in less than 5 minutes it feels like someone is throwing acid on my skin. It turns out it's not the result of my medication, but it's the disease and the only thing I can do is wear sunscreen and cover up as much as I can when I am out in the sun. Then I finally got my test results to find out if I can start the immunosuppressant Imuran--I start tomorrow. And I start a very high dose--with a LOT of warnings and precautions. Basically, I have to become a germophobe because if I catch even a common cold, I can end up in the hospital. Granted, I knew all of this weeks ago, but I'm just starting to realize it now.
And it's not only unsettling, it's scary. It's one thing to know something, but something totally different to realize it. I've learned to find the upside of things. If I can't? I find something to laugh about. I mean, my mother and I almost got kicked out of a hospital waiting room because she's on dialysis, I'm a perfect match, but can't donate, and we came up with the idea that I would donate one of my kidneys, go in for the fistula surgery (since my own creatinine levels have been slowly rising), and when my one kidney started to fail, she'd loan it back to me. And we'd go back and forth, depending on our financial situations at the time. Granted, it's not really funny, but we had everything worked out down to the last detail, and found it hysterical. Even funnier? While we hatched our insane plan, my father was in an OR with his chest cracked open having major heart surgery. That's just how we deal with things. Find an upside, or find something outrageously inappropriate and laugh about it. Except I'm still trying to find a way to do either right now. Except maybe I haven't been told I have to quit smoking because every imaging scan I was given showed that my lungs are clear (even though I have asthma and COPD).
Now I'm starting to realize that "normal" will no longer exist. Well, there will be a "normal" for me, but it won't be close to what other people define as normal. I just have no idea what it will be. Will it continue to be this constant horrible pain? Will the pain be worse? Will it be better? Will my range of motion/mobility get better with treatment? I've already lost 60lbs, even though I've only dropped one size (the joint and lymph node swelling has a lot to do with that). I was already warned about sanitizer, germ masks in certain situations, precautions... but what will it be?
Wednesday, July 11, 2012
I Need A Warning Label. Or Know When I'm Wearing a Bullseye
Living with chronic pain is difficult enough. Then after 10 years, I finally find myself at the point that I'm barely able to function and one of my specialists who has stepped on my rheumatologist's toes in the past goes all mafia and sends me off to another specialist because it's perfectly clear that I don't have fibromyalgia. And he was right. Several months, several doctors, dozens of vials of blood, imaging tests, and it's finally confirmed I have an autoimmune disease. Except I was told it was Mixed Connective Tissue Disease, but my new rheumy is telling me it's inflammatorypolyarthropathy and polymyalgia rheumatica. One small problem with both of those: neither are treated with Plaquenil and Azathioprine. Oh, and PMR was ruled out during my 2nd visit. But it gets better. Three weeks later, I'm STILL waiting for test results to start the Azatioprine (the lab is backed up, the whole 4th of July thing, and well... my rheumy decided to go on vacation). And I learned that I'm part vampire. Again. Except it's worse. I really haven't been in the sun since last summer. And both times I was, I was burned. Like lobster red, blistered, living off of solarcaine burned. And that was with SPF 80 sunblock. This year, I haven't spent much time in the sun. When I have, I've worn long sleeves, or my exposure was limited to how long it took me to get from my car to the store and back. Until Friday. Five minutes in the sun, in a tank top, and it felt like someone was pouring acid on me. No sunburn, just thousands of tiny, itchy blisters that appeared when I ducked for cover in the shade. Not a good sign. But I have to wait until tomorrow or Monday to find out what the hell THAT was all about. The only medication I'm on that causes photosensitivity is Plaquenil, except a reaction that extreme is unheard of. PMR and a BS diagnosis code of "I don't know wtf you have" appears to be going out the window with that one. Did I mention I've been a bit bitchy this week? Probably because I seem to have a bullseye somewhere on me or a sign that I can't see, but others can and it's daring them all to piss me off.
I still haven't heard back from school as to why I'm on academic probation, when I have a 3.9 GPA, all of my paperwork regarding my disability is in, I've already been in contact with the head of Academic Affairs AND the Disabilities office.. but it seems that "high importance" means nothing. Which puts me in a bad spot. I'm determined to prove to that ignorant, prejudiced jackass that just because I have a chronic, sometimes debilitating illness does not mean that I am stupid and cannot complete my degree. It just means it might take me a bit longer. But if I somehow end up being kicked out of the university, it's going to be difficult to be accepted into another one. If I sue for discrimination (which I have an excellent case for), I'm faced with the same problem. Which pisses me off even more because I'm backed into a corner.
Then there's the IRS. My refund was withheld because my return was flagged for review--in MARCH. I was told I would either receive my money or a notice within 60 days. It's way past that now. Turns out they forgot to review my return and I have to wait another FORTY FIVE days. The bastards. (Did I mention it took me over 3 hours of being looped through their phone system, hung up on, passed from one wrong department to another, and being put on hold for 30 minutes to find this out?)
I won't even talk about 2 doctors and their medical bills, except to say when I found out how screwed up their systems are and told the woman EIGHT times I didn't need a copy of the ledger, she mailed it to me anyway... dumbass tree killer.
Then of course there's my car.. ah, poor Blue. And jackass mechanics. When I tell a mechanic he doesn't have to rush an estimate to fix my car, but I do need it fixed because it is causing my transmission to lock in 3rd gear as a safety precaution, that doesn't mean to take your sweet ass time. Tomorrow would be 6 days and no call. All he needs to do is make a call to find out how much the parts cost, add the labor in, and call me back.. we're talking 15 minutes here... So I'm going to another shop tomorrow. Talking to the guy today, I have some hope. If not, I'm screwed, because that leaves me with only 1 shop left in the entire area I haven't burned through. It's not that I expect mechanics to be the obsessive compulsive perfectionist mechanics I was, but at least try not to be the dumb fuck moronic rip off artist. Don't leave grease in my car. Don't steal things, don't break things, don't lie to me, and no matter how much of a pain my car is to fix, at least try to pretend you want to fix it when I'm talking to you on the phone or standing right there.. curse at her all you want when you're fixing her, but really?
Finally, there's Lennox. The Belfast City Council (as in Belfast, Ireland) decided a dog had to be murdered for no other reason than because he resembled a pit bull. Turns out, he wasn't. He was a labrador/bulldog mix. He was seized by illegal means, locked in a concrete cell, abused, and neglected for over 2 years while his family and people around the world tried to save his live (and while the city council accepted money for his license and registration which even said he was a bulldog) and murdered him overnight.
I can only hope people stop pissing me off and things start to improve. Especially since my pain is getting worse, so my temper is getting shorter. And I have at least 2 more mechanics to deal with. And another heatwave in the forecast.
I still haven't heard back from school as to why I'm on academic probation, when I have a 3.9 GPA, all of my paperwork regarding my disability is in, I've already been in contact with the head of Academic Affairs AND the Disabilities office.. but it seems that "high importance" means nothing. Which puts me in a bad spot. I'm determined to prove to that ignorant, prejudiced jackass that just because I have a chronic, sometimes debilitating illness does not mean that I am stupid and cannot complete my degree. It just means it might take me a bit longer. But if I somehow end up being kicked out of the university, it's going to be difficult to be accepted into another one. If I sue for discrimination (which I have an excellent case for), I'm faced with the same problem. Which pisses me off even more because I'm backed into a corner.
Then there's the IRS. My refund was withheld because my return was flagged for review--in MARCH. I was told I would either receive my money or a notice within 60 days. It's way past that now. Turns out they forgot to review my return and I have to wait another FORTY FIVE days. The bastards. (Did I mention it took me over 3 hours of being looped through their phone system, hung up on, passed from one wrong department to another, and being put on hold for 30 minutes to find this out?)
I won't even talk about 2 doctors and their medical bills, except to say when I found out how screwed up their systems are and told the woman EIGHT times I didn't need a copy of the ledger, she mailed it to me anyway... dumbass tree killer.
Then of course there's my car.. ah, poor Blue. And jackass mechanics. When I tell a mechanic he doesn't have to rush an estimate to fix my car, but I do need it fixed because it is causing my transmission to lock in 3rd gear as a safety precaution, that doesn't mean to take your sweet ass time. Tomorrow would be 6 days and no call. All he needs to do is make a call to find out how much the parts cost, add the labor in, and call me back.. we're talking 15 minutes here... So I'm going to another shop tomorrow. Talking to the guy today, I have some hope. If not, I'm screwed, because that leaves me with only 1 shop left in the entire area I haven't burned through. It's not that I expect mechanics to be the obsessive compulsive perfectionist mechanics I was, but at least try not to be the dumb fuck moronic rip off artist. Don't leave grease in my car. Don't steal things, don't break things, don't lie to me, and no matter how much of a pain my car is to fix, at least try to pretend you want to fix it when I'm talking to you on the phone or standing right there.. curse at her all you want when you're fixing her, but really?
Finally, there's Lennox. The Belfast City Council (as in Belfast, Ireland) decided a dog had to be murdered for no other reason than because he resembled a pit bull. Turns out, he wasn't. He was a labrador/bulldog mix. He was seized by illegal means, locked in a concrete cell, abused, and neglected for over 2 years while his family and people around the world tried to save his live (and while the city council accepted money for his license and registration which even said he was a bulldog) and murdered him overnight.
I can only hope people stop pissing me off and things start to improve. Especially since my pain is getting worse, so my temper is getting shorter. And I have at least 2 more mechanics to deal with. And another heatwave in the forecast.
Monday, July 9, 2012
Rose Red
Rose Red is a Stephen King novel about a wealthy woman's--Ellen Rimbauer--diary. Shortly after her marriage, her husband bought them a plot of land and began to build a mansion, with the intentions of filling it with not just things they had purchased from their world travels, but the finest of everything. Unfortunately, the land, construction, and the house itself was cursed from the beginning by a series of accidents and deaths. Ellen herself felt the compulsion to ceaselessly build one project, one addition, one improvement after another. It was almost as if as long as the construction never ended, she found a way to keep herself from facing the sorrow and the horrors of what was really going on.
Sometimes I feel the same way. I work online, I write, I draw, I read, I find ways to keep busy. And I'm always trying to find ways to remodel and redecorate. And clean everything out. I have no clue how, but I can fill up over two dozen large boxes of stuff for donation and in no time, I find myself overrun with clutter. And I'm back to filling up boxes. And wanting to redo my office. Again. I just redid my office (kind of) just shy of two years ago. My best friend was given a new desk for Christmas and wanted to know if I wanted her old one. I needed a desk. She also bought me a surge protector and a desk chair to go with it. Then she bought a new entertainment center to go with the television her parents bought her for Christmas and asked me if I wanted her old one, so it too, went into my office. I already had a baker's rack I was using as a book shelf, and when I used the space as a bedroom, I painted the walls that didn't have wall paper (which was picked out by my late grandfather, so I have no intentions of changing it and it matches the paint colour), bought new curtains and I had a new office space. But I was never really satisfied with it. I could only fit so many books in it, one wall is used for storage, firewood, and a plastic tote of books to be put in the attic for storage, I have a treadmill that I intend to sell considering I can't use it and neither can my mom, I really don't have the space for my books to be organized the way I want (or for them to be as accessible as I'd like), the carpet is rather hideous, over 30 years old, the entertainment center would probably fall over if you sneezed too hard on it (it's been taken apart and put back together several times, but it was free, worked for awhile, and considering it's one of those starter Ikea specials, it's not that bad), and the space also doubles as the kiddies' playroom. I have a full tote of Barbies, boxes of legos, Lincoln Logs, stuffed animals, a tea set, match box cars, and a few other toys. And of course, a television, Wii, and a few games. But mostly, the space is constantly a crowded cluster. And I can't stand it. No matter how I figure it, it never works. So it's time for an overhaul. But how?
Then I saw a picture on a friend's Facebook page. It was a bedroom. Except it was a bed, a hanging light, and wall-to-wall books. My dream library. Granted, I couldn't do something like that in my bedroom (which is also on my list of remodeling, but will be a larger challenge and a different blog), but that's when I realized what I can do in my office. I can build my library. My mom has already laid claim to the baker's rack (10 seconds into my idea and she's claiming stuff already--I guess she's all for it!). First I need to clean out and donate a lot of stuff. Next to go is that hideous, worn out, trashed carpet. I'm sure I can find a cheap remnant, since I don't need padding or any fancy stuff to go with it--it's in the basement and a relatively high traffic area. And I can either find or build a book case. But not a small one. One that will take up the entire wall where the small entertainment center is. I just need some space for the few toys, DVD's, my nephew's books (he's totally a male mini-me), the Wii, and the television, but I'll have entire WALL for my books! I can finally seal the leaks in the sliding glass doors, but they won't be blocked by anything anymore. Unless we get new couches in the living room; then I'll have a loveseat, which is fine. I can buy a cover cheap enough. Then when I have the money and the time, I can look into a small wardrobe for the storage corner, so I have a place to put my out of season clothes and bedding instead of giant plastic totes. Workable, affordable (dirt cheap!), easy enough to do since I'm in no rush, and totally what I've been wanting, but couldn't imagine--that is, until I saw that picture. And one more thing to add to my project list. (As if working on at least a dozen other projects right now isn't enough....I can start collecting what I want for the office while I'm packing up stuff to get rid of for donation--except hopefully this time the clutter will stay gone) Now what to do about that interior window, 2 gallon fish tank, and 30 gallon fish tank...
But I know better than to think that this will be done in a short period of time. My pain levels and mobility are still worsening, the fatigue has its days. It's going to be a long process. But I find the process of cleaning things out and redecorating/remodeling to be psychologically good for my mind, body, and soul. It's like closing the door to the past and moving forward towards the future. Remembering the past and all of its lessons is never a bad thing, but sometimes physically wiping the slate clean to prepare for what's to come can be therapeutic, no matter how slow the progress is.
Sometimes I feel the same way. I work online, I write, I draw, I read, I find ways to keep busy. And I'm always trying to find ways to remodel and redecorate. And clean everything out. I have no clue how, but I can fill up over two dozen large boxes of stuff for donation and in no time, I find myself overrun with clutter. And I'm back to filling up boxes. And wanting to redo my office. Again. I just redid my office (kind of) just shy of two years ago. My best friend was given a new desk for Christmas and wanted to know if I wanted her old one. I needed a desk. She also bought me a surge protector and a desk chair to go with it. Then she bought a new entertainment center to go with the television her parents bought her for Christmas and asked me if I wanted her old one, so it too, went into my office. I already had a baker's rack I was using as a book shelf, and when I used the space as a bedroom, I painted the walls that didn't have wall paper (which was picked out by my late grandfather, so I have no intentions of changing it and it matches the paint colour), bought new curtains and I had a new office space. But I was never really satisfied with it. I could only fit so many books in it, one wall is used for storage, firewood, and a plastic tote of books to be put in the attic for storage, I have a treadmill that I intend to sell considering I can't use it and neither can my mom, I really don't have the space for my books to be organized the way I want (or for them to be as accessible as I'd like), the carpet is rather hideous, over 30 years old, the entertainment center would probably fall over if you sneezed too hard on it (it's been taken apart and put back together several times, but it was free, worked for awhile, and considering it's one of those starter Ikea specials, it's not that bad), and the space also doubles as the kiddies' playroom. I have a full tote of Barbies, boxes of legos, Lincoln Logs, stuffed animals, a tea set, match box cars, and a few other toys. And of course, a television, Wii, and a few games. But mostly, the space is constantly a crowded cluster. And I can't stand it. No matter how I figure it, it never works. So it's time for an overhaul. But how?
Then I saw a picture on a friend's Facebook page. It was a bedroom. Except it was a bed, a hanging light, and wall-to-wall books. My dream library. Granted, I couldn't do something like that in my bedroom (which is also on my list of remodeling, but will be a larger challenge and a different blog), but that's when I realized what I can do in my office. I can build my library. My mom has already laid claim to the baker's rack (10 seconds into my idea and she's claiming stuff already--I guess she's all for it!). First I need to clean out and donate a lot of stuff. Next to go is that hideous, worn out, trashed carpet. I'm sure I can find a cheap remnant, since I don't need padding or any fancy stuff to go with it--it's in the basement and a relatively high traffic area. And I can either find or build a book case. But not a small one. One that will take up the entire wall where the small entertainment center is. I just need some space for the few toys, DVD's, my nephew's books (he's totally a male mini-me), the Wii, and the television, but I'll have entire WALL for my books! I can finally seal the leaks in the sliding glass doors, but they won't be blocked by anything anymore. Unless we get new couches in the living room; then I'll have a loveseat, which is fine. I can buy a cover cheap enough. Then when I have the money and the time, I can look into a small wardrobe for the storage corner, so I have a place to put my out of season clothes and bedding instead of giant plastic totes. Workable, affordable (dirt cheap!), easy enough to do since I'm in no rush, and totally what I've been wanting, but couldn't imagine--that is, until I saw that picture. And one more thing to add to my project list. (As if working on at least a dozen other projects right now isn't enough....I can start collecting what I want for the office while I'm packing up stuff to get rid of for donation--except hopefully this time the clutter will stay gone) Now what to do about that interior window, 2 gallon fish tank, and 30 gallon fish tank...
But I know better than to think that this will be done in a short period of time. My pain levels and mobility are still worsening, the fatigue has its days. It's going to be a long process. But I find the process of cleaning things out and redecorating/remodeling to be psychologically good for my mind, body, and soul. It's like closing the door to the past and moving forward towards the future. Remembering the past and all of its lessons is never a bad thing, but sometimes physically wiping the slate clean to prepare for what's to come can be therapeutic, no matter how slow the progress is.
Saturday, July 7, 2012
I Dare You
I have never backed down from a fight in my life. I have, however, walked away from one, but there were extenuating circumstances. I didn't care how much I could have gotten hurt or suffered (which I did and still am), other people that I love would have gotten hurt and suffered more. Not to mention there were children involved. And unlike some people who use children as pawns and shields, I will not do anything to intentionally hurt a child. So I walked away. Obviously, this was not a physical fight, but sometimes verbal and emotional fights leave wounds that never fully heal or leave scars that are far deeper than any physical fight ever could. I have also never lost a fight, physical or otherwise. No, I'm not abusive, but when someone starts a fight with me, or I find something worth fighting for, I don't back down. I may not always see the results I want, but something positive always comes out of it in addition to a learning experience on all sides involved. My disease is, and will always be no different.
Early last semester, I was once again facing a medical withdrawal as the worst flare ever set in. I assumed it was Lyme Disease or Epstein-Barr along with Fibromyalgia. I was diagnosed with FMS a decade ago when I was too sick to continue to work, followed by 9 positive diagnoses of Lyme, and at least once with EBV, and for several weeks, the symptoms fit. I was also under incredible stress, so it made sense. I was already familiar with my university's disabilities office, so I spoke to the director to find out what my options were. Several of my professors had no problem with me keeping up from home, but others weren't as supportive. One I understood because it was a workshop type class in which my classmates reviewed my work and gave constructive criticism (I understood completely). Another was a short, online class the professor was completely unprepared and unorganized. The texts weren't ordered until 2 days AFTER the start of the class, the syllabus wasn't available until the day after the class started and changed every day, the professor was never available to answer questions, so I withdrew from the course, considering I had 6 weeks to write four 10 page papers, read 7 books, half a text book, write another 6 essays, answer 12 online forum questions and respond to two other students for each question. (The forums? I had 24 hours to answer the question once it was posted and 12 hours to respond to two other students before the individual forum closed). That allowed no time as my illness got worse and less time to keep up with my other courses. So I spoke to a student Dean about what was happening. It wasn't my first partial medical leave, so I didn't see a problem.
What came out of his mouth turned my blood cold. Students with chronic illness generally have to choose between their health or their education. In the Dean's experience, when a chronically ill student tries to juggle both, it never ends well. Never. Ends. Well. While my attendance backs his statement up, my grades and awards to date prove him wrong. The difference between my previous college and this university is in the way the student laws and campus policy is written. Before I received my Associates Degrees (Yes, I dual majored and graduated with not one, but TWO in 2 years), as long as I had a doctor's note or medical proof for every class that I missed, kept in contact with my professors, and proved that I was keeping up from home, nothing could be done about my attendance. (Basically, a professor could not punish me for missing classes if I had a valid medical reason and showed that I was keeping up with the work, and met the class objective. He or she could not lower my grade, or kick me out of class--and neither could the college). This university is a bit different. I have to have my doctor's provide proper documentation, including what accommodations are required, what my illness is, how it was diagnosed, how it is being treated, what is being done about it to keep it under control--everything--before the university can decide if my required accommodations are reasonable and if they can be done. Did I mention that this university also carries a pretty hefty tuition bill? But the paperwork was turned in, filled out properly, and I went out on a leave of absence. With 2 people to keep in contact until I received a diagnosis, started treatment, and figured out when I will be returning. (Which is still unknown right now).
Then I receive a letter in the mail today from the university. I am on academic probation. With a 3.96 GPA. Complete with a message that if I am having trouble with my courses, health, or at home, I can contact the tutoring center, counseling services (all calls are confidential, of course), or disability services so that the university can extend any and all help they can so that I can become a successful alumni. That letter had better be a computer glitch. It is in their system, on file (both computer and paper--in SEVERAL offices, including that ignorant, prejudiced, discriminating asshole) about my disability. And now I'm on academic probation for a 3.96 GPA?
I can't recall a single time in my life that I haven't had to fight like hell or work my ass off for what I wanted. When I decided to return to college, I knew it would be challenging. I wasn't a kid anymore, I had several chronic illnesses (even though it turns out I have only one, but it's worse than those several combined), and a chronically sick parent. I knew when I finished (not if), I may never be able to work, but earning a graduate's degree is a goal of mine. If I was going to succeed, I was going to have to work harder and fight for it. I was going to have to fight against myself because my body is fighting against itself. I might have to fight against other students because I'm sick, but don't really look it, because I'm extremely intelligent and learn quickly (except when it comes to math), because I'm much older than most of them and I learn better by engaging in classroom discussions, by asking a lot of questions if I'm unclear about something (what many students would consider the class ass kisser), and because I am sick, intelligent, learn quickly, go well above and beyond in all of my work, but miss a lot of class. So when I am in class, I know exactly what is going on, what we were supposed to read, learn, study. And in many cases, I may even be ahead in the required reading if a class spent longer on a lesson than expected but I wasn't there and followed the syllabus from home. I expected all of that. But what I never expected was to fight against a university administration because of my illness. Because they don't know about my disease. If they weren't familiar with how bad Chronic Lyme Disease could get or how debilitating Fibromyalgia could get, how am I supposed to expect them to deal with and understand how bad a rare autoimmune disorder can get? Part of me wants to apply to a different university that can accommodate my needs better, but after what I was told last year about how those who are chronically ill never make it through college successfully, it makes me want to fight that much harder just to prove that asshole wrong. I can't wait to see that Dean's face on graduation day. It may have been a not so subtle suggestion to get me to leave the university (except it sounded more like a threat), but what that Dean didn't realize is 1) I don't take not so subtle hints, especially when I'm a stubborn Irish/Pollock with a very clear goal in mind; 2) I sure as hell don't take threats too kindly; 3) If you tell me I can't do something because I'm a woman, , stupid, fat, sick, or anything (basically tell me I can't?) I'll die proving your ass wrong.
Early last semester, I was once again facing a medical withdrawal as the worst flare ever set in. I assumed it was Lyme Disease or Epstein-Barr along with Fibromyalgia. I was diagnosed with FMS a decade ago when I was too sick to continue to work, followed by 9 positive diagnoses of Lyme, and at least once with EBV, and for several weeks, the symptoms fit. I was also under incredible stress, so it made sense. I was already familiar with my university's disabilities office, so I spoke to the director to find out what my options were. Several of my professors had no problem with me keeping up from home, but others weren't as supportive. One I understood because it was a workshop type class in which my classmates reviewed my work and gave constructive criticism (I understood completely). Another was a short, online class the professor was completely unprepared and unorganized. The texts weren't ordered until 2 days AFTER the start of the class, the syllabus wasn't available until the day after the class started and changed every day, the professor was never available to answer questions, so I withdrew from the course, considering I had 6 weeks to write four 10 page papers, read 7 books, half a text book, write another 6 essays, answer 12 online forum questions and respond to two other students for each question. (The forums? I had 24 hours to answer the question once it was posted and 12 hours to respond to two other students before the individual forum closed). That allowed no time as my illness got worse and less time to keep up with my other courses. So I spoke to a student Dean about what was happening. It wasn't my first partial medical leave, so I didn't see a problem.
What came out of his mouth turned my blood cold. Students with chronic illness generally have to choose between their health or their education. In the Dean's experience, when a chronically ill student tries to juggle both, it never ends well. Never. Ends. Well. While my attendance backs his statement up, my grades and awards to date prove him wrong. The difference between my previous college and this university is in the way the student laws and campus policy is written. Before I received my Associates Degrees (Yes, I dual majored and graduated with not one, but TWO in 2 years), as long as I had a doctor's note or medical proof for every class that I missed, kept in contact with my professors, and proved that I was keeping up from home, nothing could be done about my attendance. (Basically, a professor could not punish me for missing classes if I had a valid medical reason and showed that I was keeping up with the work, and met the class objective. He or she could not lower my grade, or kick me out of class--and neither could the college). This university is a bit different. I have to have my doctor's provide proper documentation, including what accommodations are required, what my illness is, how it was diagnosed, how it is being treated, what is being done about it to keep it under control--everything--before the university can decide if my required accommodations are reasonable and if they can be done. Did I mention that this university also carries a pretty hefty tuition bill? But the paperwork was turned in, filled out properly, and I went out on a leave of absence. With 2 people to keep in contact until I received a diagnosis, started treatment, and figured out when I will be returning. (Which is still unknown right now).
Then I receive a letter in the mail today from the university. I am on academic probation. With a 3.96 GPA. Complete with a message that if I am having trouble with my courses, health, or at home, I can contact the tutoring center, counseling services (all calls are confidential, of course), or disability services so that the university can extend any and all help they can so that I can become a successful alumni. That letter had better be a computer glitch. It is in their system, on file (both computer and paper--in SEVERAL offices, including that ignorant, prejudiced, discriminating asshole) about my disability. And now I'm on academic probation for a 3.96 GPA?
I can't recall a single time in my life that I haven't had to fight like hell or work my ass off for what I wanted. When I decided to return to college, I knew it would be challenging. I wasn't a kid anymore, I had several chronic illnesses (even though it turns out I have only one, but it's worse than those several combined), and a chronically sick parent. I knew when I finished (not if), I may never be able to work, but earning a graduate's degree is a goal of mine. If I was going to succeed, I was going to have to work harder and fight for it. I was going to have to fight against myself because my body is fighting against itself. I might have to fight against other students because I'm sick, but don't really look it, because I'm extremely intelligent and learn quickly (except when it comes to math), because I'm much older than most of them and I learn better by engaging in classroom discussions, by asking a lot of questions if I'm unclear about something (what many students would consider the class ass kisser), and because I am sick, intelligent, learn quickly, go well above and beyond in all of my work, but miss a lot of class. So when I am in class, I know exactly what is going on, what we were supposed to read, learn, study. And in many cases, I may even be ahead in the required reading if a class spent longer on a lesson than expected but I wasn't there and followed the syllabus from home. I expected all of that. But what I never expected was to fight against a university administration because of my illness. Because they don't know about my disease. If they weren't familiar with how bad Chronic Lyme Disease could get or how debilitating Fibromyalgia could get, how am I supposed to expect them to deal with and understand how bad a rare autoimmune disorder can get? Part of me wants to apply to a different university that can accommodate my needs better, but after what I was told last year about how those who are chronically ill never make it through college successfully, it makes me want to fight that much harder just to prove that asshole wrong. I can't wait to see that Dean's face on graduation day. It may have been a not so subtle suggestion to get me to leave the university (except it sounded more like a threat), but what that Dean didn't realize is 1) I don't take not so subtle hints, especially when I'm a stubborn Irish/Pollock with a very clear goal in mind; 2) I sure as hell don't take threats too kindly; 3) If you tell me I can't do something because I'm a woman, , stupid, fat, sick, or anything (basically tell me I can't?) I'll die proving your ass wrong.
Friday, July 6, 2012
Welcome To the Twilight Zone
I woke up at 5am. After falling asleep sometime well after 2am. Seriously. And I was wide awake and in pain. But it was chilly in the house, it didn't take me too long to get out of bed (for the first time all year), so I just went with it. I made my iced coffee, turned on what passes for local news, and started my day. It took me until I left to realize it was Friday. That's not surprising.. unless I have a doctor's appointment, I usually forget what day it is. Especially when a holiday falls in the middle of the week. But I had a plan today: take my car to the local garage, find out what's wrong with it, then take it to get the long overdue oil change. Hopefully it'll stop throwing temper tantrums, especially if it was a quick repair I could afford. That was mistake number one.
My car requires some super expensive specialized computer scanning equipment (yay German technology!!) that some shops don't have. And those that do want an arm and a leg to use their scanners. Then they want you to pretty much sign over your first, second, and third born children to fix anything on your car. (If you're REALLY lucky? They'll even fix it right the first time!) At least the basics are the same, so over the weekend, I started with the basics to try to find the problem. So when the mechanic with the really cool scanner (if I had over $10,000, I'd buy myself one) hooked it up to my car, a random air conditioner code came up. "Does you're A/C work? This might just be coming up if someone was randomly pulling things, but who knows.." Oops. I checked fuses, but not all of them are labeled, so I sorta kinda pulled a few out to check them to see if any were blown... and may have broken my air conditioner in the process. Not that I use it anyway, but still. Then I found out that what IS broken is a $45 part. That runs about $100 in labor. Unless the stuff surrounding it is rusted, swollen, and caused it to break. Then it's a few hundred more. What're the odds given my luck, right? (I'm still a bit pissed I may or may not have inadvertently broken my a/c system..) Then I went and got my oil changed. Of course they had 1 oil filter left, and the box was mislabeled. But I had a coupon for it, and a coupon for them to check the a/c system, so I figured what the hell, right? I can exonerate myself. Or not. "We can't do this. It's going to cost about $140... blah blah blah, unless it's the compressor, but first we'll start by making sure if there's a leak and finding out where the leak is." The guy is usually pretty straight forward with me, but it's a newer car, so I stupidly blurt out without thinking how could my car's a/c system get a leak in it already? "Easy. There must be a hole in it somewhere." If my car wasn't on the lift, I'd of kicked him right off that table. Really. A hole? I never would have guessed. Not to mention I already kinda pissed him off by making a very valid point about asshole customers illegally parking in the handicap spaces, to which he admitted they're pretty lenient about. I brought out my placard registration and ID, and tried to stay calm while I explained to him just how much trouble he could get into by allowing that practice if I needed that spot because he chose to not give a damn that some lazy asshole customer wanted the spot next to the door. (It was always a pet peeve, but since I broke down and got my own blue window card, it pisses me off).
Then I'm stuck in the waiting room with an old man who reminded me of my grandfather and an almost completely deaf WWII veteran. Turns out, both grew up and worked where my family grew up. And the stories began. Most I knew by listening to my grandparents and mother, but these had a lot more detail---details purposely left out to a growing girl that shone a whole new light on things. It was like going back in time. And straight into a movie. Of course my mom laughed at me because most of it I hadn't figured out by now, but what are the odds that up here, in the middle of nowhere, I run into 2 old men in their 80s from that far away? Seriously?
As if that's not enough to learn in one day, I learned why they're called flights of stairs. Not because stairs fly, but because people and objects fly DOWN them. As I did. I knew I bruised more easily over the last few years, but I look like I went several rounds with every step and lost. How? I'm not sure. My entire side just weakened and next thing I know I'm on all fours at the bottom of the steps on the concrete floor. I ache like hell now, but the next few days are seriously going to suck...
My car requires some super expensive specialized computer scanning equipment (yay German technology!!) that some shops don't have. And those that do want an arm and a leg to use their scanners. Then they want you to pretty much sign over your first, second, and third born children to fix anything on your car. (If you're REALLY lucky? They'll even fix it right the first time!) At least the basics are the same, so over the weekend, I started with the basics to try to find the problem. So when the mechanic with the really cool scanner (if I had over $10,000, I'd buy myself one) hooked it up to my car, a random air conditioner code came up. "Does you're A/C work? This might just be coming up if someone was randomly pulling things, but who knows.." Oops. I checked fuses, but not all of them are labeled, so I sorta kinda pulled a few out to check them to see if any were blown... and may have broken my air conditioner in the process. Not that I use it anyway, but still. Then I found out that what IS broken is a $45 part. That runs about $100 in labor. Unless the stuff surrounding it is rusted, swollen, and caused it to break. Then it's a few hundred more. What're the odds given my luck, right? (I'm still a bit pissed I may or may not have inadvertently broken my a/c system..) Then I went and got my oil changed. Of course they had 1 oil filter left, and the box was mislabeled. But I had a coupon for it, and a coupon for them to check the a/c system, so I figured what the hell, right? I can exonerate myself. Or not. "We can't do this. It's going to cost about $140... blah blah blah, unless it's the compressor, but first we'll start by making sure if there's a leak and finding out where the leak is." The guy is usually pretty straight forward with me, but it's a newer car, so I stupidly blurt out without thinking how could my car's a/c system get a leak in it already? "Easy. There must be a hole in it somewhere." If my car wasn't on the lift, I'd of kicked him right off that table. Really. A hole? I never would have guessed. Not to mention I already kinda pissed him off by making a very valid point about asshole customers illegally parking in the handicap spaces, to which he admitted they're pretty lenient about. I brought out my placard registration and ID, and tried to stay calm while I explained to him just how much trouble he could get into by allowing that practice if I needed that spot because he chose to not give a damn that some lazy asshole customer wanted the spot next to the door. (It was always a pet peeve, but since I broke down and got my own blue window card, it pisses me off).
Then I'm stuck in the waiting room with an old man who reminded me of my grandfather and an almost completely deaf WWII veteran. Turns out, both grew up and worked where my family grew up. And the stories began. Most I knew by listening to my grandparents and mother, but these had a lot more detail---details purposely left out to a growing girl that shone a whole new light on things. It was like going back in time. And straight into a movie. Of course my mom laughed at me because most of it I hadn't figured out by now, but what are the odds that up here, in the middle of nowhere, I run into 2 old men in their 80s from that far away? Seriously?
As if that's not enough to learn in one day, I learned why they're called flights of stairs. Not because stairs fly, but because people and objects fly DOWN them. As I did. I knew I bruised more easily over the last few years, but I look like I went several rounds with every step and lost. How? I'm not sure. My entire side just weakened and next thing I know I'm on all fours at the bottom of the steps on the concrete floor. I ache like hell now, but the next few days are seriously going to suck...
Thursday, July 5, 2012
Why It's Called "Medical Practice"...
Did you know that there's actually a diagnostic code in medicine that more or less translates to "I have no F*cking clue what you have, but your tests and physical examinations show something's there?" Yep. There is. I found out today, that's what my medical chart says. Well, that, or my doctor's tech is an idiot. Or, that's the only way my doctor can get paid. I honestly have no clue. Which is scary. I could almost swear that during my last visit my specialist told me that my autoimmune disease (I remember that much, since all of my visits to her and at least 2 visits to the doctor who referred me to her told me I had an autoimmune disease) was mixed connective something... The only one I can think of (and any search engine comes up with is Mixed Connective Tissue Disease/Disorder). Combine that with the fact that she specifically mentioned the fact that many of my symptoms matched that of Lupus and Polymyositis (two of the triad for MCTD diagnosis), without coming up with positive test results for either...My memory may be a bit hazy sometimes (stress induced, sleep deprived, panic induced, drug induced), but when I remember something, I can recall EVERYTHING--from tone inflection, who was wearing what, right down to the tiniest detail. Ask my mom. It pisses her off when I do that because usually it's how I win the rare argument with her when it's not a matter of whipping out my laptop or cell phone and bringing up my ninja cyber research skills (or my library). But I'm digressing.... back to "practicing."
I'm waiting for the results of an enzyme test to find out if I can start azothyaprine treatment. What is that besides probably spelled wrong and a generic drug? It's a wicked immunosuppressant, commonly used for kidney transplant patients, but also used to treat many autoimmune disorders when steroids either aren't an option or have failed. In my case, it's a bit of both. I'm not entirely sure I would still be here if I wasn't put on steroids so many times over the last decade. As much as my last rheumatologist screwed up, putting me on steroids to treat fibromyalgia and severe bronchitis actually helped slow down the progression of my disease. Steroids did come with a host of serious side effects--extreme weight gain (I went up to 297lbs at one point), extra stress on my lower joints, worsening stomach problems, even lower vitamin levels, tooth and gum problems, and high cholesterol. So azothyaprine it is. Which comes with several pages of warning on its own. Including blood tests to find out if I can take it and based on the labs, what the recommended dosage should be if I can take it. After that, regular blood tests to make sure it's not killing me. (And making sure the disease isn't affecting any other organs.) Except the results still aren't back yet and instead of them flagging the test, calling the script in, then calling me, I have to call the office, then they have to call the pharmacy.
So how did I find out about the diagnostic code? Well, I have several check ups with my other doctors in the near future, so I wanted to make sure I understood I heard my rheumy correctly, and save my other doctors correctly and get the diagnostic code. They can call and verify if they wanted to--the more my doctors talk to each other and cooperate, the more they understand my illnesses, the better they can help me, and I'm more than perfectly fine with that. Until the tech picked up the phone, gave me 2 codes and 2 diagnoses. Then I got upset. MCTD wasn't one of them, but the I have no idea diagnosis (which, if you enter it into any search engine, it gives you the diagnostic code, information about rheumatoid arthritis, ads, and 3 q&a forums that say the same thing--doctors have no clue. It doesn't even warrant a Wikipedia page!! That's how you REALLY know you're screwed--when something doesn't have a Wiki page. The second? Polymyalgia Rheumatica. Seriously? I was referred to this woman 3 months ago because my last specialist suspected I may have had that or Still's Disease. In less than a week, she ruled it out--yes, I had an elevated ESR &CRP, but X-Rays showed nothing, I had a fever, extremely swollen hands, feet, lymph nodes, other joints ached, the neck pain was arthritis due to a broken neck, am not elderly (which 98% of the patients are), of Scandanavian decent (most are), my symptoms did not go away on steroids, I do not have blurry vision, vascular problems, and nothing else to indicate I have it except hip pain. Yet, there it is, in my chart, as a diagnosis.
Neither codes/diagnoses are autoimmune disorders, neither fit my symptoms, yet I'm already on 1 medication that kind of works, and am waiting for results to start a second, more powerful (and seriously scary) medication for an autoimmune disorder that--according to my own doctor's office--I don't have. There's no denying what my test results say. There's no denying that there are real, physical symptoms during an exam. As more tests came up negative, I was more hopeful that my doctors were closer to a diagnosis, but they became more stumped. Until I heard MCTD. All the symptoms fit perfectly (except the malar rash from Lupus). Now I'm even more confused. Do I take the immunosuppressants, knowing that they'll probably work, knowing that even though life will drastically change again, turning me into one of those OCD germophobic crazies I can't stand, but never really find a name for what I have, or refuse to take them and see how much worse this can get because once again, a doctor screwed up paperwork? I guess that's why they call it practice....
I'm waiting for the results of an enzyme test to find out if I can start azothyaprine treatment. What is that besides probably spelled wrong and a generic drug? It's a wicked immunosuppressant, commonly used for kidney transplant patients, but also used to treat many autoimmune disorders when steroids either aren't an option or have failed. In my case, it's a bit of both. I'm not entirely sure I would still be here if I wasn't put on steroids so many times over the last decade. As much as my last rheumatologist screwed up, putting me on steroids to treat fibromyalgia and severe bronchitis actually helped slow down the progression of my disease. Steroids did come with a host of serious side effects--extreme weight gain (I went up to 297lbs at one point), extra stress on my lower joints, worsening stomach problems, even lower vitamin levels, tooth and gum problems, and high cholesterol. So azothyaprine it is. Which comes with several pages of warning on its own. Including blood tests to find out if I can take it and based on the labs, what the recommended dosage should be if I can take it. After that, regular blood tests to make sure it's not killing me. (And making sure the disease isn't affecting any other organs.) Except the results still aren't back yet and instead of them flagging the test, calling the script in, then calling me, I have to call the office, then they have to call the pharmacy.
So how did I find out about the diagnostic code? Well, I have several check ups with my other doctors in the near future, so I wanted to make sure I understood I heard my rheumy correctly, and save my other doctors correctly and get the diagnostic code. They can call and verify if they wanted to--the more my doctors talk to each other and cooperate, the more they understand my illnesses, the better they can help me, and I'm more than perfectly fine with that. Until the tech picked up the phone, gave me 2 codes and 2 diagnoses. Then I got upset. MCTD wasn't one of them, but the I have no idea diagnosis (which, if you enter it into any search engine, it gives you the diagnostic code, information about rheumatoid arthritis, ads, and 3 q&a forums that say the same thing--doctors have no clue. It doesn't even warrant a Wikipedia page!! That's how you REALLY know you're screwed--when something doesn't have a Wiki page. The second? Polymyalgia Rheumatica. Seriously? I was referred to this woman 3 months ago because my last specialist suspected I may have had that or Still's Disease. In less than a week, she ruled it out--yes, I had an elevated ESR &CRP, but X-Rays showed nothing, I had a fever, extremely swollen hands, feet, lymph nodes, other joints ached, the neck pain was arthritis due to a broken neck, am not elderly (which 98% of the patients are), of Scandanavian decent (most are), my symptoms did not go away on steroids, I do not have blurry vision, vascular problems, and nothing else to indicate I have it except hip pain. Yet, there it is, in my chart, as a diagnosis.
Neither codes/diagnoses are autoimmune disorders, neither fit my symptoms, yet I'm already on 1 medication that kind of works, and am waiting for results to start a second, more powerful (and seriously scary) medication for an autoimmune disorder that--according to my own doctor's office--I don't have. There's no denying what my test results say. There's no denying that there are real, physical symptoms during an exam. As more tests came up negative, I was more hopeful that my doctors were closer to a diagnosis, but they became more stumped. Until I heard MCTD. All the symptoms fit perfectly (except the malar rash from Lupus). Now I'm even more confused. Do I take the immunosuppressants, knowing that they'll probably work, knowing that even though life will drastically change again, turning me into one of those OCD germophobic crazies I can't stand, but never really find a name for what I have, or refuse to take them and see how much worse this can get because once again, a doctor screwed up paperwork? I guess that's why they call it practice....
Tuesday, July 3, 2012
Learning From a Past I No Longer Have
I grew up in a garage. It came as no surprise that when the time came to choose a career, I wanted to become a mechanic. While I had the physical strength, high intelligence, a natural gift for the work, and a knack for thinking outside the box, I admit one area that I had a problem in was the simple fix. I could listen to an engine and diagnose a problem just by the noise it was making most of the time. Big jobs were easy--the more complicated, the better. But if it was something stupidly simple, I'd be stumped for hours--sometimes weeks. I had a problem with my brake lights one time and it took me over 6 weeks to figure out the problem. All my brake lights stayed lit, except the third light (the one in the rear window..), whether my foot was on the brake or not anytime I turned my lights on. I checked the fuses and the entire electrical system several times, but couldn't figure the problem out. It took my dad all of 2 minutes to realize that the auto parts store sold me the wrong brake light when I finally gave up. See my point? Six weeks, countless hours, tearing my car apart at least a dozen times, and it was 1 light bulb. That kind of simple thinking isn't something I'm good at. Or wasn't.
To say it was difficult when I had to go out on disability was (and is) and understatement. It took almost 5 years to come to the realization that I couldn't be a mechanic anymore as a career. It's still something I struggle with. It's who I was, who I am. What I'm good at. It's a puzzle. A car comes into the shop with a problem, and it's my job to figure out what it is and fix it. In some ways, now it's easier--plug a computer into the OBD outlet, a series of numbers pops up and it tells you what's wrong most of the time. Other times, you have to look for the problem, or you can see the problem and fix it. Like what my car, Blue, is doing now. I'm getting a secondary fault code, but nothing telling me a specific problem, other than my ABS (anti-lock brake) and traction control lights are on. And my transmission goes into a safety mode, locking itself in 3rd gear, making it so I can't drive more than 35-40 MPH once in awhile..
As a general rule, I hate mechanics. I'm a female, so most see me as an easy mark until they're put in their place because I WAS a mechanic. (Yes, I actually had one try to tell me my flux capacitor needed repair once.. he's lucky he lived through that moment). Dealerships are by far the worst--I worked at one for a brief period of time and quit because I can't justify ripping people off on purpose for a paycheck. (Also true.. paying all that money for those multi point checkups? It takes all of 10 minutes, and except for maybe the air filter, nothing gets taken apart, just a quick visual inspection, not to mention the pressure sales, scare tactics, and the fact that you go in for a tire rotation or oil change and the mechanic finds things wrong with your car every time.) Blue brings out the worst in all mechanics because she's a Volkswagen--German engineered and NEVER easy to fix, so most mechanics charge more to repair her. The last mechanic I trusted to fix her destroyed the interior because the bastard couldn't be bothered to put the interior back together right (I could've done a better job, but I paid someone to do it so it didn't look like that and it's still not taken care of because the shop never has the time, parts are missing, family emergencies came up, I got sick, etc.) AND one of the techs stole over $200 worth of my father's tools from it. But this time I was given the name of someone who might be able to help if I'm wrong about my theory and can't fix her over the next few days.
I figured I'd look into a few things first.. check the brake fluid. It was okay. Then the fuses..of course the damn thing is labeled in German, so I looked in the owner's manual. To my surprise, both the ABS and ESP (traction control) run on the same fuse circuits.. the interior fuse box in the car checked out fine, but a little digging through automotive manuals revealed that there are at least 6 other fuses in the circuit.. I was only aware of 2 fuse boxes in the car--one in the interior, and one somewhere under the hood, probably near the battery. But at least I knew enough to start by looking for the easy, cheap fix (fluid levels, fuses, then connectors) before thinking bigger (sending her off to a mechanic because I can't do the work anymore). I still might have to if I either can't find the other fuse box, or can't find the other 6 fuses in the system, or it's not the fuses... But I learned. Right? I think since the overall tone of this blog is positive, I'll just shut up now before I end it with a string of profanities (which isn't uncommon when I'm working on a car, especially my own, since I have yet to own a car that's cooperated with me) :D
To say it was difficult when I had to go out on disability was (and is) and understatement. It took almost 5 years to come to the realization that I couldn't be a mechanic anymore as a career. It's still something I struggle with. It's who I was, who I am. What I'm good at. It's a puzzle. A car comes into the shop with a problem, and it's my job to figure out what it is and fix it. In some ways, now it's easier--plug a computer into the OBD outlet, a series of numbers pops up and it tells you what's wrong most of the time. Other times, you have to look for the problem, or you can see the problem and fix it. Like what my car, Blue, is doing now. I'm getting a secondary fault code, but nothing telling me a specific problem, other than my ABS (anti-lock brake) and traction control lights are on. And my transmission goes into a safety mode, locking itself in 3rd gear, making it so I can't drive more than 35-40 MPH once in awhile..
As a general rule, I hate mechanics. I'm a female, so most see me as an easy mark until they're put in their place because I WAS a mechanic. (Yes, I actually had one try to tell me my flux capacitor needed repair once.. he's lucky he lived through that moment). Dealerships are by far the worst--I worked at one for a brief period of time and quit because I can't justify ripping people off on purpose for a paycheck. (Also true.. paying all that money for those multi point checkups? It takes all of 10 minutes, and except for maybe the air filter, nothing gets taken apart, just a quick visual inspection, not to mention the pressure sales, scare tactics, and the fact that you go in for a tire rotation or oil change and the mechanic finds things wrong with your car every time.) Blue brings out the worst in all mechanics because she's a Volkswagen--German engineered and NEVER easy to fix, so most mechanics charge more to repair her. The last mechanic I trusted to fix her destroyed the interior because the bastard couldn't be bothered to put the interior back together right (I could've done a better job, but I paid someone to do it so it didn't look like that and it's still not taken care of because the shop never has the time, parts are missing, family emergencies came up, I got sick, etc.) AND one of the techs stole over $200 worth of my father's tools from it. But this time I was given the name of someone who might be able to help if I'm wrong about my theory and can't fix her over the next few days.
I figured I'd look into a few things first.. check the brake fluid. It was okay. Then the fuses..of course the damn thing is labeled in German, so I looked in the owner's manual. To my surprise, both the ABS and ESP (traction control) run on the same fuse circuits.. the interior fuse box in the car checked out fine, but a little digging through automotive manuals revealed that there are at least 6 other fuses in the circuit.. I was only aware of 2 fuse boxes in the car--one in the interior, and one somewhere under the hood, probably near the battery. But at least I knew enough to start by looking for the easy, cheap fix (fluid levels, fuses, then connectors) before thinking bigger (sending her off to a mechanic because I can't do the work anymore). I still might have to if I either can't find the other fuse box, or can't find the other 6 fuses in the system, or it's not the fuses... But I learned. Right? I think since the overall tone of this blog is positive, I'll just shut up now before I end it with a string of profanities (which isn't uncommon when I'm working on a car, especially my own, since I have yet to own a car that's cooperated with me) :D
Monday, July 2, 2012
Why Dogs Rule
I know my dear friend Chris and a few others have mentioned that they are starting to promote my blog a bit more and I can't thank them enough. For a little while, my blogs will be a little all over the place as I learn to process my new diagnosis of MCTD, start treatments, adjust to life with this, and everything that goes with it. I tend to be funny, sarcastic, positive (most of the time), find humor among the chaotic and insane (which is just about everything lately), but it's going to be a bit of a mixed bag for a little while.
Usually my morning routine is the same.. My alarm goes off, it takes me at least an hour to get out of bed because my joints are in pain and very stiff, so I have to kind of work everything loose before I can get up. Some mornings take longer than others. On the mornings my mother has dialysis, my dog is usually either asleep on the living room couch or in my closet, waits until I pour my coffee, sit back on the bed, then comes to join me. Unless it's really cold. Then I'll find her curled up at the bottom of my bed in the blankets. On higher pain days, she'll usually try to stick close to me because she senses something isn't quite right. This morning was a bit different. I woke up to her curled up against me when the alarm went off. My jaw (along with everything else) hurt more than usual and moving felt almost impossible. I have a tendency to clench my jaw in my sleep if my pain level reaches a certain point, so it's not unusual to wake up feeling like I smashed my face into something, but this morning was pretty bad.
I started my usual routine (after, of course, scratching her nose a bit)... trying to move my fingers, toes, wrists, ankles.. working my way through my joints. As I fought my way through the pain and each joint, I noticed she would lick the area I was trying to move, and nuzzle her nose against it. As I tried to lift my arms a bit, she'd stick her nose under it and help me lift it. She'd do the same for my legs and my head. She was actually trying to help me move and get out of bed! Once I was able to sit up, she calmly laid down next to me, head in my lap and waited until I tried to stand up. Not once did she leave my side as I slowly got ready to head out the door. When I did get home, I went back down to my room, took my other pain medication and she spent most of the afternoon laying at the bottom of my bed, sharing my pink fuzzy blanket.
It is said that dogs can sense when their owners are in pain or don't feel well. I've noticed in the past that when my mother or I are having rough days, she'll stick closer to us than usual, when we're feeling down, she'll pull out her cute pet tricks or act goofy to try to cheer us up. But after this morning, there's no doubt that a dog needs to be trained to sense when something is really off to help its owner. And that is why dogs rule.
Usually my morning routine is the same.. My alarm goes off, it takes me at least an hour to get out of bed because my joints are in pain and very stiff, so I have to kind of work everything loose before I can get up. Some mornings take longer than others. On the mornings my mother has dialysis, my dog is usually either asleep on the living room couch or in my closet, waits until I pour my coffee, sit back on the bed, then comes to join me. Unless it's really cold. Then I'll find her curled up at the bottom of my bed in the blankets. On higher pain days, she'll usually try to stick close to me because she senses something isn't quite right. This morning was a bit different. I woke up to her curled up against me when the alarm went off. My jaw (along with everything else) hurt more than usual and moving felt almost impossible. I have a tendency to clench my jaw in my sleep if my pain level reaches a certain point, so it's not unusual to wake up feeling like I smashed my face into something, but this morning was pretty bad.
I started my usual routine (after, of course, scratching her nose a bit)... trying to move my fingers, toes, wrists, ankles.. working my way through my joints. As I fought my way through the pain and each joint, I noticed she would lick the area I was trying to move, and nuzzle her nose against it. As I tried to lift my arms a bit, she'd stick her nose under it and help me lift it. She'd do the same for my legs and my head. She was actually trying to help me move and get out of bed! Once I was able to sit up, she calmly laid down next to me, head in my lap and waited until I tried to stand up. Not once did she leave my side as I slowly got ready to head out the door. When I did get home, I went back down to my room, took my other pain medication and she spent most of the afternoon laying at the bottom of my bed, sharing my pink fuzzy blanket.
It is said that dogs can sense when their owners are in pain or don't feel well. I've noticed in the past that when my mother or I are having rough days, she'll stick closer to us than usual, when we're feeling down, she'll pull out her cute pet tricks or act goofy to try to cheer us up. But after this morning, there's no doubt that a dog needs to be trained to sense when something is really off to help its owner. And that is why dogs rule.
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