"That doesn't make any sense, but we'll keep an eye on it." Not quite something you want to hear from your doctor. Granted, I should be used to this by now, but still... my primary doc assumed it was from the Plaquenil (an anti-rheumatic med) I've been taking to reduce the serious joint swelling, but it turns out she was wrong. All it's done is give me a kind of slight fake tan. Not really a laying on a beach all summer or living in a tanning bed tan, but just enough to keep me from my usual Casper paleness--minus the extra freckles. Except all my scars are changing colours. They're turning light pink and white. Even scars I had from childhood that were long forgotten--and long forgotten how I got them. Others? Well, they've been kind of funny to remember how I got them. Like the 2 broken, split knuckles in a fight, the dog bite because I was a dumbass, or the one on my elbow from the car accident that broke my neck and several other bones. For a 25mph crash into a giant rock, I did a lot of damage that day--including putting my elbow through the dashboard. F*cking spiders. But my rheumatologist has absolutely no clue as to why the sudden change in colour. So it's more lab tests, an "huh, that's odd, I really don't know, it doesn't make any sense, but we'll keep an eye on it." Then it's off to worry about other things. Like doubling my Imuran, for instance.
When I first started on the immunosuppresant, I was given a 5 page "warning" pamphlet of possible side effects (including lymphoma) and precautions in addition to a consult by my pharmacist that was reinforced when I developed bronchitis and had to call my doctor. The whole OCD hand sanitizer, hand washing, avoiding sick people, masks... basically, I had to do everything possible to avoid getting sick--even funnier? Avoid injury. I love my new rheumatologist, but she has NO idea just how creative I am when it comes to injuring myself without even trying. I haven't noticed any difference since I started the medication except I'm in a lot more pain than I was, but I'm not as stiff in the morning.
Why that is, again, she doesn't know. She suspects my disease is progressing a lot more rapidly now that I have no steroids in my system. It could also be that as the swelling is going down and I'm losing weight (taking more stress off my joints), they're adjusting to the lack of pressure and the pain is temporary. A third scenario? The pain is from permanent damage. I have no idea what to think other than hoping that my organs aren't affected or starting to become affected. But she goes and doubles the Imuran. Turns out I was on a "baby" dose for autoimmune diseases. I can go up to 5 times the dose I was on. Fantastic, right? I get to double my germophobic efforts now. I don't even want to THINK about what I'll have to do if I have to go up to the highest dose--live in a climate controlled, germ free bubble maybe? Haz Mat suit? I'm open to suggestions..
Monday, August 13, 2012
Friday, August 10, 2012
Saved From a Mother's Curse. Kind Of
"I hope you have one just like you one day!!!" That wonderful phrase uttered by mothers all over the world across generations to their children. Except in my case, it was both my parents, my entire family, AND family friends. To say that I was a handful growing up would be a bit of an understatement. Give me 2 seconds and I could guarantee you at the very least: a pretty creative injury (that probably required an ER visit), something destroyed beyond any hope of repair, something that caused one of my parents to do an immediate, split second remodel for safety reasons (such as tearing out closet rods, molly bolted, plastered over plant hangers, etc.), fire extinguishing, and the constant "what the hell were you thinking?" as a few examples--all at an extremely young age. I'm not entirely sure how old I was when I finally had a real bed again and furniture in my bedroom. I had my bedroom windows locked (I think my dad nailed them shut after he caught me leaning on the screen at 5am, over the garage roof one morning), a mattress and box spring on the floor once I learned how to escape from my crib, bells on the outside of the door (not the door handle, because I quickly learned that if I held the bells, I could escape the room without mom hearing), and the rest of my furniture was locked in my closet because I'd turn it into a jungle gym at night when I was supposed to be sleeping. Keep in mind this was all before I turned 2. And I didn't get any better from there. :)
I think God knew what he was doing when he decided the odds of me ever being able to have kids is almost impossible. Conceiving is difficult. Carrying to term is almost impossible. I've already had several miscarriages. To carry to full term would be very high risk and would require a LOT of extra vitamins and almost constant injections, but even then, the chances are slim. Then there's the risk to me. But now I would have to consider the possibility of passing on this disease to my child--and raising a child with this disease. I know many women who do and bless them for it, but there's days I can barely make it through, let alone having someone depend on me like that. I just honestly don't know. Everything happens for a reason, right?
Over 8 years ago, my nephew was born, though and after a couple of months, his parents split up; my brother and him moved back home so that my brother could return to college, get his career started, and build a good life for them. His mother was getting her life together as well. For almost 3 years my mother and I helped raise him while his parents got their lives together. And I realized that that little boy was just. like. me. Eight years later? He still is. And I find I'm the one asking "what the hell were you thinking?" And realizing after over an hour of arguing with him I realized I was staring at myself. Except it's a male, eight year old version of myself. And I have absolutely NO clue how my mother survived my childhood.
He came to stay here for a few days this week and I found myself apologizing to my mom--and his. That boy is bruised, scratched, cut, and scraped from head to toe because of his "brilliant ideas" that sounded good at the time. Aside from trying to kill himself by death defying stunts, he loves archery and hunting, so he's learning how to use a compound bow. It was a bit weird teaching him stuff my dad taught me. Except I know I listened better. We'd of spent more time with his new duck hunting game if I didn't break it--I kind of dive bombed the dog by accident with the duck and killed it on my first try. So archery kept him out of trouble for at least a little while--until he almost shot me by accident.
The hardest part of it all was that I haven't been able to spend time with him in months--long before I had a diagnosis--before the worst of my symptoms really started. I couldn't take him to the beach swimming because I can't be out in the sun. There is no shade down there, so there wasn't anywhere I could even seek refuge out of the sun. There's still a lot of things I can't do between the swelling and adjusting to the medication, or not being able to do certain things because of the high risk of injury. He was fine with a lot of it, but I had no idea how to explain that this disease isn't going away when he responded "that's okay, we'll just do it when it's gone." I didn't even tell him what I have, or what kind of disease it was. How do you explain that to an 8 year old? Hell, I'm still trying to explain that to myself, considering I don't even know what the next few months are going to bring.
I think God knew what he was doing when he decided the odds of me ever being able to have kids is almost impossible. Conceiving is difficult. Carrying to term is almost impossible. I've already had several miscarriages. To carry to full term would be very high risk and would require a LOT of extra vitamins and almost constant injections, but even then, the chances are slim. Then there's the risk to me. But now I would have to consider the possibility of passing on this disease to my child--and raising a child with this disease. I know many women who do and bless them for it, but there's days I can barely make it through, let alone having someone depend on me like that. I just honestly don't know. Everything happens for a reason, right?
Over 8 years ago, my nephew was born, though and after a couple of months, his parents split up; my brother and him moved back home so that my brother could return to college, get his career started, and build a good life for them. His mother was getting her life together as well. For almost 3 years my mother and I helped raise him while his parents got their lives together. And I realized that that little boy was just. like. me. Eight years later? He still is. And I find I'm the one asking "what the hell were you thinking?" And realizing after over an hour of arguing with him I realized I was staring at myself. Except it's a male, eight year old version of myself. And I have absolutely NO clue how my mother survived my childhood.
He came to stay here for a few days this week and I found myself apologizing to my mom--and his. That boy is bruised, scratched, cut, and scraped from head to toe because of his "brilliant ideas" that sounded good at the time. Aside from trying to kill himself by death defying stunts, he loves archery and hunting, so he's learning how to use a compound bow. It was a bit weird teaching him stuff my dad taught me. Except I know I listened better. We'd of spent more time with his new duck hunting game if I didn't break it--I kind of dive bombed the dog by accident with the duck and killed it on my first try. So archery kept him out of trouble for at least a little while--until he almost shot me by accident.
The hardest part of it all was that I haven't been able to spend time with him in months--long before I had a diagnosis--before the worst of my symptoms really started. I couldn't take him to the beach swimming because I can't be out in the sun. There is no shade down there, so there wasn't anywhere I could even seek refuge out of the sun. There's still a lot of things I can't do between the swelling and adjusting to the medication, or not being able to do certain things because of the high risk of injury. He was fine with a lot of it, but I had no idea how to explain that this disease isn't going away when he responded "that's okay, we'll just do it when it's gone." I didn't even tell him what I have, or what kind of disease it was. How do you explain that to an 8 year old? Hell, I'm still trying to explain that to myself, considering I don't even know what the next few months are going to bring.
Tuesday, August 7, 2012
Flying Dogs...& Other Randomness
After my last blog, I read a friend's "un-aversary" blog and realized something. I'm not exactly depressed. I mean, I am, but I'm nowhere near where I used to be, but something has definitely been off and something she said clicked--I'm angry. Okay. More than just angry. I'm a lot of things: depressed, angry, lost, confused, relieved, hopeful, pissed off, scared, and many other emotions I just can't quite name yet. The past few years have been anything but easy. Just when I begin to put my life together, something comes and blows the hell out of it. I'm not talking a few setbacks here; I'm talking about a few nukes and a shit ton of napalm dropped right in the middle of everything. Granted, I've never been the type of person to do anything on a small scale, so if a bomb is going to be dropped on my life, why should that be any different, right?
But at least I've learned to appreciate the little things, no matter how little. Like a free cup of coffee on Monday. I've recently become addicted to iced coffee. And sweetened flavored iced coffee at that. Me... the same person who drank straight up, melt your spoon, probably could be used by NASA as rocket fuel black as night hot coffee for ages, except for the occasional latte. Except the guy goofed and made a hot coffee by mistake. Then told me to just take both. I certainly wasn't going to complain--especially since I had only slept 20 minutes that night.
I haven't seen my nephew in months. I talk to his mother on a regular basis, so I know how he's doing, but between their life and mine (as well as my parents), things have happened during his summer break that have kept him from spending as much time over here as he usually would. I found out late this morning that he was coming over for a few days, which was/is just awesome. I bought him this really cool duck hunting game back in June and I've been dying for him to come over and try it out. It's this battery operated laser shot gun with a foam duck that launches off the end of it. The duck flies around through the air (or is supposed to) and you have about 30 seconds to shoot it 3 times. Except the duck flops straight to the ground. I'm hoping it's just crappy batteries and I didn't buy a defective game. So tomorrow we're going to the store to buy new batteries. Duracell's suck. We did have to hide the duck, though, so that my dog wouldn't get at it. It's sitting on a top shelf, way out of even my mom's reach. While we were hunting for his baseball card collection, he turns around and asks me "Do you think we put the duck high enough away from Gracie? [my dog] I mean, what if she builds an airplane or something and flies up and gets it?" I'm pretty sure that if my dog was either able to build an airplane or starts flying, the foam duck would be the least of our problems at that point. She is a smart dog and everything, but airplane building and flying? I seriously hope not. But given my life? I really wouldn't be surprised. But hey... I have a duck to get flying tomorrow.
But at least I've learned to appreciate the little things, no matter how little. Like a free cup of coffee on Monday. I've recently become addicted to iced coffee. And sweetened flavored iced coffee at that. Me... the same person who drank straight up, melt your spoon, probably could be used by NASA as rocket fuel black as night hot coffee for ages, except for the occasional latte. Except the guy goofed and made a hot coffee by mistake. Then told me to just take both. I certainly wasn't going to complain--especially since I had only slept 20 minutes that night.
I haven't seen my nephew in months. I talk to his mother on a regular basis, so I know how he's doing, but between their life and mine (as well as my parents), things have happened during his summer break that have kept him from spending as much time over here as he usually would. I found out late this morning that he was coming over for a few days, which was/is just awesome. I bought him this really cool duck hunting game back in June and I've been dying for him to come over and try it out. It's this battery operated laser shot gun with a foam duck that launches off the end of it. The duck flies around through the air (or is supposed to) and you have about 30 seconds to shoot it 3 times. Except the duck flops straight to the ground. I'm hoping it's just crappy batteries and I didn't buy a defective game. So tomorrow we're going to the store to buy new batteries. Duracell's suck. We did have to hide the duck, though, so that my dog wouldn't get at it. It's sitting on a top shelf, way out of even my mom's reach. While we were hunting for his baseball card collection, he turns around and asks me "Do you think we put the duck high enough away from Gracie? [my dog] I mean, what if she builds an airplane or something and flies up and gets it?" I'm pretty sure that if my dog was either able to build an airplane or starts flying, the foam duck would be the least of our problems at that point. She is a smart dog and everything, but airplane building and flying? I seriously hope not. But given my life? I really wouldn't be surprised. But hey... I have a duck to get flying tomorrow.
Friday, August 3, 2012
Running Into Walls
No, not literally. Unless you count the fire extinguisher incident. Don't ask, but no one was injured. Not even the fire extinguisher, the bracket, or the wall. Metaphorically speaking I'm running into walls. I usually blog several times a week, read at least one of my magazines (I'm still several weeks behind), and read at least one book--usually two or more. That's excluding the random cleaning, cleansing, and organizing sprees, creative projects, and online stuff. Lately? Nothing. Unless you count the boring, mature, required grown up stuff. Basic cleaning, grooming, bills, schedules, making tough choices.. but that's about it.
I have no idea why. I have lived with severe depression for so long, I honestly don't know a time that I wasn't depressed. Grade school, high school... it's just always been a part of my life. Medication never worked. It always made it worse--some even led to suicide attempts. After trying all but maybe two on the market (and refusing medications that require frequent and regular blood tests to make sure they're not frying my organs or otherwise killing me and/or have "serious weight gain" as the #1 side effect) I gave up and accepted this as part of life. Until I was put on an anti seizure medication to control complex migraines and noticed that while I still deal with some depression, it eases it considerably. Which is why I know (mostly) that I'm not really depressed. So I don't understand why I'm running into walls.
I'm in the middle of reading 3 books right now. It's not uncommon for me to read several books at the same time. Depending on my mood depends on which book I'll pick up at the time. I'm reading "The Prince & The Art of War" by Machiavelli, a historical book about Islamic Martyrs, and "The Burly Man" by Zachary Lewis, a biography by a health activist I know online who talks about his journey from a normal and healthy life, getting sick, and finding out he has not one, but two autoimmune diseases. None of them are books that would take more than a week to finish--I'm on a month and counting. My art? Still staring at blank pages. I find myself doing a lot of pacing. I'm restless. I'm not online much anymore because I'm not sure what to say. Then there's my typical go-to feel better cure--shopping. I couldn't be bothered. Oddly enough? I'm reasoning with myself as to why I shouldn't shop. I'm trying to clean the house out and de-clutter it, so why would I buy more crap? When the hell did I grow up? Yet I don't feel depressed. I don't feel sad, hopeless..
If this is a depression, this is definitely new to me. Granted, I am feeling a bit lost. Normally by now I'd be complaining about the price of textbooks and preparing for the fall semester. But I decided to remain on a medical leave of absence at least until the end of the year. I don't know if the medications are going to help, or if I'm going to have to change treatments. So far, the constant low grade fever is going down, the constant joint swelling is a bit less during the day, but the joint pain is still getting worse and at night I seem to blow up again. I also don't know how the Imuran is going to affect me in the long run (5 pages of warnings and precautions and all, not to mention lab tests and such). I'm less than a month in and I already have bronchitis. So does that mean I'm going to be spending a lot of time at my doctor's office constantly sick? There's so many unknowns and so many changes that maybe that's why I find myself running into walls every time I turn around. But hey, I haven't injured myself yet so that's a start, right?
I have no idea why. I have lived with severe depression for so long, I honestly don't know a time that I wasn't depressed. Grade school, high school... it's just always been a part of my life. Medication never worked. It always made it worse--some even led to suicide attempts. After trying all but maybe two on the market (and refusing medications that require frequent and regular blood tests to make sure they're not frying my organs or otherwise killing me and/or have "serious weight gain" as the #1 side effect) I gave up and accepted this as part of life. Until I was put on an anti seizure medication to control complex migraines and noticed that while I still deal with some depression, it eases it considerably. Which is why I know (mostly) that I'm not really depressed. So I don't understand why I'm running into walls.
I'm in the middle of reading 3 books right now. It's not uncommon for me to read several books at the same time. Depending on my mood depends on which book I'll pick up at the time. I'm reading "The Prince & The Art of War" by Machiavelli, a historical book about Islamic Martyrs, and "The Burly Man" by Zachary Lewis, a biography by a health activist I know online who talks about his journey from a normal and healthy life, getting sick, and finding out he has not one, but two autoimmune diseases. None of them are books that would take more than a week to finish--I'm on a month and counting. My art? Still staring at blank pages. I find myself doing a lot of pacing. I'm restless. I'm not online much anymore because I'm not sure what to say. Then there's my typical go-to feel better cure--shopping. I couldn't be bothered. Oddly enough? I'm reasoning with myself as to why I shouldn't shop. I'm trying to clean the house out and de-clutter it, so why would I buy more crap? When the hell did I grow up? Yet I don't feel depressed. I don't feel sad, hopeless..
If this is a depression, this is definitely new to me. Granted, I am feeling a bit lost. Normally by now I'd be complaining about the price of textbooks and preparing for the fall semester. But I decided to remain on a medical leave of absence at least until the end of the year. I don't know if the medications are going to help, or if I'm going to have to change treatments. So far, the constant low grade fever is going down, the constant joint swelling is a bit less during the day, but the joint pain is still getting worse and at night I seem to blow up again. I also don't know how the Imuran is going to affect me in the long run (5 pages of warnings and precautions and all, not to mention lab tests and such). I'm less than a month in and I already have bronchitis. So does that mean I'm going to be spending a lot of time at my doctor's office constantly sick? There's so many unknowns and so many changes that maybe that's why I find myself running into walls every time I turn around. But hey, I haven't injured myself yet so that's a start, right?
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