This year is finally ending--in about an hour and a half! I didn't think a year could feel both endless and short at the same time. So now it's time to reflect on the past 12 months and shut the door. So I have no idea how long this might come out. I'll try to keep it kinda short-ish, but sorry if it's not.
It's been just over a year since I've spoken to my brother or seen his daughters after our last argument that he ended with a comment (paraphrased) about if my father had a kid like me, he'd want to die. The new year started with my father going in for high risk back to back heart surgeries and set the tone for the rest of the year. My health went to hell in a hand basket, forcing a medical leave from college (which is now an official withdrawal because leaves of any kind are allowed for 2 semesters only--no exceptions). Seven months of poking, prodding, labs, tests, and reviews of 15 years of tests I learned that I had been misdiagnosed for the past decade. I never had Fibromyalgia, Chronic Fatigue Syndrome (which was a diagnosis that came and went, depending on the year), nor did I have Chronic Lyme Disease--I have an autoimmune disease. Of course it doesn't have a "real" name. "Unspecified Inflammatory Mixed Tissue Disease." Doctorspeak for "science doesn't know what to call it yet." But it's an orphan of Lupus and a mix of a few others. At first, I was overjoyed and relieved that I wasn't crazy (my symptoms weren't biopsychosomatic or something), then angry at my original primary dr and previous specialist for missing the diagnosis. My primary blew me off as a hypochondriac, sent me to the specialist to prove me wrong, that there was nothing wrong with me, fired me as his patient after the specialist diagnosed me, then CHANGED my medical records to cover his arse. My specialist stopped listening to me/was afraid to admit he was wrong after several years. But because there were treatments to get my illness under control, I took on a fighting attitude until the gravity of this hit me. The medications I'll be on for the rest of my life, I can't donate blood, I can't donate my kidney to my mother (which I'm a match for), I'm so cold intolerant, I wear long sleeves in 80 degree weather (which is probably a good thing, considering I can't be out in the sun at all, even with strong sunscreen and long sleeves to protect my skin from burning in less than 5 minutes), it has no cure, it can be fatal, and if it's not, complications from it can be. And it could have been brought under control a decade ago.
Then there's my mother and her kidney failure/dialysis. At least she's no longer on blood pressure medication. In the course of 5 years since her kidneys began to fail until now (end stage renal failure), she has gone from 15 prescriptions and 58 pills a day plus vitamins to one prescription--a phosphorous binder all dialysis patients have to take after every meal. Now to finish getting her healthy and wait for a transplant.
But I did get to "meet" some amazing people this year. Chris, Caitlin, and Nadine. I met Chris first on an invisible illness site. We hit it off instantly. Like me, she seems to live in an insane asylum between her family and her pets (although I don't have ducks or chickens--I just have parakeets and a smartass, backtalking, revenge seeking dog). Through her I met Caitlin and Nadine. We all live with the good, bad, and ugly of "invisible" illnesses. They're invisible because we look normal on the outside (lmao!). It was Chris who opened my eyes about how bitter I was becoming. She took away something that was important to me after an argument with someone, but it took awhile to understand why and I'm better for it (like most lessons learned from friends). I don't know where I would be if I hadn't met the 3 of them this year.
I also reconnected with some old friends from what seemed like a lifetime ago. It's funny how with true friendships years and years can pass, but once the basic "hey, how's it going?" and catching up is done, all the years melt away and distances don't matter. Especially this past year. We've all gone through hell. But all of us have laughed, cried, screamed, cursed, and laughed some more while crying together--both old and new friends. And that's something that can't be put into words.
I'm no longer bitter, but part of me is still a little angry at those doctors for taking so much time away from me. I lost almost all of my 20s--many chances and choices were taken and made for me because of incompetence and ego and that's something that's slowly fading. Things like that take time (and maybe a few more "crash test dummy" days). I just know that I'm glad I finally have real answers behind why I'm sick, beyond grateful and thankful for the amazing friends I've made this year and those who have stood by my side, and I can't wait until 2013 starts. Lucky number 13.
Monday, December 31, 2012
Saturday, December 29, 2012
How Being a Crash Test Dummy Reminded Me of Questions I Meant to Ask My Rheumy
I'll get back into regular blogging eventually (it's on my list) and the whole New Year's recap/resolutions in my next blog. I'm usually pretty good at remembering everything I want to ask my rheumatologist during my appointments, but since I found out I don't have Fibromyalgia and I don't have Chronic Lyme Disease (I definitely had the disease once, possibly twice, but because my former rheumy used cheap, unreliable tests, odds are, I did not have it 9 times. The 2nd diagnosis is in question because my neurologist tested me for babeciosis--a rare bacterial disease also found in deer ticks that can be transmitted at the same time as Lyme Disease, but Doxycycline does not kill the infection and can lead to a false positive Lyme test). I asked plenty of questions about my medications, vitamins, interactions with foods, the warning labels on my medications (the immunosuppressant carries a TON of scary warnings, including avoiding germs, injury (lmao!), people who've recently received live vaccines, etc.) and what do I need to do to protect myself/any special precautions, best times to take them... Then this past week has me writing a list in my little notebook.
It all started last week when I wanted a good picture of my dog for Christmas. She doesn't do the whole antler/headband thing. Even if I could get a pair on her head, she'd have them ripped off her head and chewed apart before I could get my camera up. With the help of my father, I managed to get a blurry picture of a snowman headband thingie, but they were destroyed in about 45 seconds. So, when I bought her toys and treats for Christmas, I couldn't resist the reindeer costume on clearance. It took a bit of wrestling, quite a few times being zapped by static electricity, but I was able to take a cute picture:
The following day, she carefully set up her runner so it would get tangled around my ankle and I would fall on my paverstone sidewalk--HARD. Yes, she is that smart and that vindictive. I twisted my back, seriously bruised and scraped up my elbow, and jammed my shoulder something fierce. All for that one picture. And ended up in a sling for 4 days. It should've been longer, but the sling was annoying. But I did notice my overall pain went up a bit. I was just recovering from a 3+ week flare my rheumy had to break by a medium/high, three day dose of prednisone 10 days earlier.
The day after Christmas, my nephew came over to spend 3 days. We had about 3" of snow on the ground from a small storm on Christmas Eve, so he wanted to go sleigh riding, except our sleds are MIA. we're good at improvising, and my mom's great at making "death sleds" (re: super fast, should probably wear full safety gear on top of extra layers of clothes not just to keep warm, but for extra padding). Attempt 1 was with the flat lid of a plastic tote, rubbed down with a candle, 2 coats of butcher's wax, and sprayed with Pledge for good measure. I don't need to post the video here. I couldn't get enough footing to push him, tried to kick the tote a few times to get him started, accidentally kicked him the arse (not hard!), burst out laughing, lost MY footing because I was laughing too hard and fell right on my arse. Twice. Only to find out not only did it not work, but there just wasn't enough snow, or the lid wasn't flat enough. So we tried candle wax and Pledge on a flattened cardboard box. That too, was a failure. But while we were trying cardboard, snowstorm #2 was hitting us and the boy wanted to try the big plastic tote--which my mom was waxing with butcher's wax, pledge, candle wax, and something else (I don't remember). 2 hours later it was time to try the tote. It acted more of a plow. And I learned how to fly. While we tried to at least lay down a decent sled track, I had to keep pushing him down the hill because I couldn't get my footing. As soon as the tote (with all 100lbs of him in it) stopped dead, I ended up doing a high flying airborne somersault, once again landing on my back in the snow. (Thankfully, there's no video of THAT!). You'd of thought I learned my lesson that day. Nope!
Day 2 brought out the hunt for a decent sled. We HAD to have something! There was now 8"+ on the ground and it was perfect skiing/sledding snow! Of course my brother never adjusted my skis after the last time he borrowed them, so my boots don't lock in the bindings, or I would have let him use those (and I would have most likely tried them for the first time in at least 11 years, just because) when we spotted it--an archaic plastic sled disc. It had a bit of a crack, a little warped, but it was a sled. 3 coats of butcher's wax, 3 coats of acryllic floor wax, and a quick coat of Pledge for good measure, off we went. It didn't quite work, and I ended up showing him how to do a running "Superman Sled Dive" to gain more speed. As if I didn't learn enough... I landed halfway down the hill, winded (or out of breath, considering I'm horribly out of shape, but I'm not sure which), lying there like a camo'd slug, trying desperately to catch my breath, knowing I had to stand up because it wasn't like I could roll UP the hill, bruised in places I didn't know COULD bruised, and aching in places I forgot existed. What the hell was I thinking (Besides it was fun)? But I learned I could sled surf! When we were out Friday, we did find a brand new sled disc, waxed it up perfectly for him and sent him out. I didn't even put my boots on. After 2 hours, he crashed it into a tree and broke it. But hey, he did take this picture of me because he thought it was just the funniest thing ever: Yep, that's me in about 6 layers, laying there as a snow slug.
But I did think of something to ask my rheumy when I see her next as I'm sitting here with heating pads, pain medication, and fine as long as I don't inhale too deeply or make any sudden movements (or try to move too much at all)--if overdoing it or injury can trigger a flare. Obviously it's painful. I have the aches, pains, and bruises to prove it. But my joints are swollen and it feels like I'm on the edge of another flare similar to the one I just barely crawled out of. And I do think that's a very good question to ask...
It all started last week when I wanted a good picture of my dog for Christmas. She doesn't do the whole antler/headband thing. Even if I could get a pair on her head, she'd have them ripped off her head and chewed apart before I could get my camera up. With the help of my father, I managed to get a blurry picture of a snowman headband thingie, but they were destroyed in about 45 seconds. So, when I bought her toys and treats for Christmas, I couldn't resist the reindeer costume on clearance. It took a bit of wrestling, quite a few times being zapped by static electricity, but I was able to take a cute picture:
The following day, she carefully set up her runner so it would get tangled around my ankle and I would fall on my paverstone sidewalk--HARD. Yes, she is that smart and that vindictive. I twisted my back, seriously bruised and scraped up my elbow, and jammed my shoulder something fierce. All for that one picture. And ended up in a sling for 4 days. It should've been longer, but the sling was annoying. But I did notice my overall pain went up a bit. I was just recovering from a 3+ week flare my rheumy had to break by a medium/high, three day dose of prednisone 10 days earlier.
The day after Christmas, my nephew came over to spend 3 days. We had about 3" of snow on the ground from a small storm on Christmas Eve, so he wanted to go sleigh riding, except our sleds are MIA. we're good at improvising, and my mom's great at making "death sleds" (re: super fast, should probably wear full safety gear on top of extra layers of clothes not just to keep warm, but for extra padding). Attempt 1 was with the flat lid of a plastic tote, rubbed down with a candle, 2 coats of butcher's wax, and sprayed with Pledge for good measure. I don't need to post the video here. I couldn't get enough footing to push him, tried to kick the tote a few times to get him started, accidentally kicked him the arse (not hard!), burst out laughing, lost MY footing because I was laughing too hard and fell right on my arse. Twice. Only to find out not only did it not work, but there just wasn't enough snow, or the lid wasn't flat enough. So we tried candle wax and Pledge on a flattened cardboard box. That too, was a failure. But while we were trying cardboard, snowstorm #2 was hitting us and the boy wanted to try the big plastic tote--which my mom was waxing with butcher's wax, pledge, candle wax, and something else (I don't remember). 2 hours later it was time to try the tote. It acted more of a plow. And I learned how to fly. While we tried to at least lay down a decent sled track, I had to keep pushing him down the hill because I couldn't get my footing. As soon as the tote (with all 100lbs of him in it) stopped dead, I ended up doing a high flying airborne somersault, once again landing on my back in the snow. (Thankfully, there's no video of THAT!). You'd of thought I learned my lesson that day. Nope!
Day 2 brought out the hunt for a decent sled. We HAD to have something! There was now 8"+ on the ground and it was perfect skiing/sledding snow! Of course my brother never adjusted my skis after the last time he borrowed them, so my boots don't lock in the bindings, or I would have let him use those (and I would have most likely tried them for the first time in at least 11 years, just because) when we spotted it--an archaic plastic sled disc. It had a bit of a crack, a little warped, but it was a sled. 3 coats of butcher's wax, 3 coats of acryllic floor wax, and a quick coat of Pledge for good measure, off we went. It didn't quite work, and I ended up showing him how to do a running "Superman Sled Dive" to gain more speed. As if I didn't learn enough... I landed halfway down the hill, winded (or out of breath, considering I'm horribly out of shape, but I'm not sure which), lying there like a camo'd slug, trying desperately to catch my breath, knowing I had to stand up because it wasn't like I could roll UP the hill, bruised in places I didn't know COULD bruised, and aching in places I forgot existed. What the hell was I thinking (Besides it was fun)? But I learned I could sled surf! When we were out Friday, we did find a brand new sled disc, waxed it up perfectly for him and sent him out. I didn't even put my boots on. After 2 hours, he crashed it into a tree and broke it. But hey, he did take this picture of me because he thought it was just the funniest thing ever: Yep, that's me in about 6 layers, laying there as a snow slug.
But I did think of something to ask my rheumy when I see her next as I'm sitting here with heating pads, pain medication, and fine as long as I don't inhale too deeply or make any sudden movements (or try to move too much at all)--if overdoing it or injury can trigger a flare. Obviously it's painful. I have the aches, pains, and bruises to prove it. But my joints are swollen and it feels like I'm on the edge of another flare similar to the one I just barely crawled out of. And I do think that's a very good question to ask...
Saturday, November 24, 2012
A Very Different Thanksgiving
So it's technically Saturday and 2 days after Thanksgiving, but it's taken me a few tries to get this blog right (and 2 days to come up with a title). Almost all families have traditions on Thanksgiving that evolve over the years as families move farther apart, expand, grow older; my family is no exception. In our case, our dinner went from being held at my grandparents' house to my aunt's house, but everything else stayed the same. Every other year, my uncle would be there since he would spend every other year with his wife's family instead of splitting the day between both families and still does. Since my older cousins married and started families, they split the day between both families, but the oldest cousin doesn't always get holidays off of work, so he and his wife do what they can to make it--they both work at the same restaurant/bar. Then there's my brother. He used to split time between his wife's family and ours, but that seems to have just stopped entirely and he spends all holidays with his wife and her family now. But very little else has changed. Thanksgiving, like all other family get togethers, is a typical family "dysfunction."
Last year was kind of weird for its own personal reasons, but it was a typical family dysfunction. The men standing around outside frying the turkey and getting drunk (before turkey frying, they'd find some excuse to do so), at least 10 different conversations going on with all of us involved in all of them, all of us trying to talk over each other, interrupting, trying to finish at least half a sentence, reliving embarrassing moments from early childhood (no one is immune except my grandfather), and my favourite--the lectures. When am I going to settle down? Am I dating anyone? If I am, is he a good guy this time? I'm not getting any younger. I told you you shouldn't have been a mechanic; that's not a proper career for a lady; I should've gone to school for something more lady like; I could've found a nice, wealthy man, settled down and started a family by now. But at least I'm starting to dress a little better, but can't I leave my hair down just once in awhile? You get the idea. haha
But I actually miss it all. I missed Easter this year because I was just too sick to go. I was running a fever, my lymph nodes were swollen, my pain level was about a 12 on a scale of 1-10, my joints were still extremely swollen I could only really fit into a pair of slippers and most of my pants didn't fit right because of the swelling in my hips and I could barely move. So by Thursday, I hadn't seen the family in over a year. I barely slept Wednesday night because of the pain and couldn't take anything since I was the one who had to drive Thursday. It was a little over an hour, mom wasn't having a bad day, but she wasn't having a great day either and I couldn't take the chance my dad was going to stay sober enough to drive home (some traditions are harder to break--especially when there are 2 turkeys to fry!). But at least I could move, my comfortable dress pants and shoes fit, and one of my good rings fit, so I was going to try to tough it out for the day. Except for getting up early to pick mom up from dialysis Friday morning, I could spend the weekend in bed with my pain meds resting and trying to get the flare under control. By 11am I was in tears wondering how I was going to make it through the entire day in that much pain, why my illnesses couldn't give me just one day of mild enough pain so I can spend time with my family, and angry that I know I should be thankful for a lot of things that day, but no one should ever have to live like this--and I wasn't just talking about myself--my mother, friends I've made over the past year going through the same thing, and the millions of others who are going through the same thing I am. Not being able to fully enjoy (or enjoy at all) holidays with family, not being able to have a "normal" life the way most people have, having to pace ourselves so that we don't overdo it--all of it. Then as we were leaving my mother had one of her dizzy spells in the driveway and did a face plant in the driveway. The good news is she's okay AND she didn't even tear her stockings (how I have no idea, but serious bonus points to Target and their $1 clearance designer lace stockings!), but she skinned it pretty good and is keeping an eye on it because the pain is a little strange now for just a skinned knee. But she swapped her 7" heels for her Dr. Scholl's "Fast Flats" in the car in case it happened again so at least she wouldn't completely lose her balance and fall again--and totally freak the rest of the family out. Her being on dialysis and needing a new kidney has them on edge to begin with, but the slightest hint of something off sends them panicking.
But this family dysfunction was the quietest ever. It was subdued, polite, and well, quiet. It was odd. I almost felt like I was spending time with the wrong family. I know it's been a tough year for all of us in terms of health, but we've had our share of tough years. It was almost like we were all in partial turkey comas long before the birds were even fried. Quiet or not, though, I'm incredibly thankful and love the fact that I did get to see many of them--and just that fact makes this latest flare, partially dislocated hip and all--easier to bear. There'll be another chance at Christmas after all. :)
Last year was kind of weird for its own personal reasons, but it was a typical family dysfunction. The men standing around outside frying the turkey and getting drunk (before turkey frying, they'd find some excuse to do so), at least 10 different conversations going on with all of us involved in all of them, all of us trying to talk over each other, interrupting, trying to finish at least half a sentence, reliving embarrassing moments from early childhood (no one is immune except my grandfather), and my favourite--the lectures. When am I going to settle down? Am I dating anyone? If I am, is he a good guy this time? I'm not getting any younger. I told you you shouldn't have been a mechanic; that's not a proper career for a lady; I should've gone to school for something more lady like; I could've found a nice, wealthy man, settled down and started a family by now. But at least I'm starting to dress a little better, but can't I leave my hair down just once in awhile? You get the idea. haha
But I actually miss it all. I missed Easter this year because I was just too sick to go. I was running a fever, my lymph nodes were swollen, my pain level was about a 12 on a scale of 1-10, my joints were still extremely swollen I could only really fit into a pair of slippers and most of my pants didn't fit right because of the swelling in my hips and I could barely move. So by Thursday, I hadn't seen the family in over a year. I barely slept Wednesday night because of the pain and couldn't take anything since I was the one who had to drive Thursday. It was a little over an hour, mom wasn't having a bad day, but she wasn't having a great day either and I couldn't take the chance my dad was going to stay sober enough to drive home (some traditions are harder to break--especially when there are 2 turkeys to fry!). But at least I could move, my comfortable dress pants and shoes fit, and one of my good rings fit, so I was going to try to tough it out for the day. Except for getting up early to pick mom up from dialysis Friday morning, I could spend the weekend in bed with my pain meds resting and trying to get the flare under control. By 11am I was in tears wondering how I was going to make it through the entire day in that much pain, why my illnesses couldn't give me just one day of mild enough pain so I can spend time with my family, and angry that I know I should be thankful for a lot of things that day, but no one should ever have to live like this--and I wasn't just talking about myself--my mother, friends I've made over the past year going through the same thing, and the millions of others who are going through the same thing I am. Not being able to fully enjoy (or enjoy at all) holidays with family, not being able to have a "normal" life the way most people have, having to pace ourselves so that we don't overdo it--all of it. Then as we were leaving my mother had one of her dizzy spells in the driveway and did a face plant in the driveway. The good news is she's okay AND she didn't even tear her stockings (how I have no idea, but serious bonus points to Target and their $1 clearance designer lace stockings!), but she skinned it pretty good and is keeping an eye on it because the pain is a little strange now for just a skinned knee. But she swapped her 7" heels for her Dr. Scholl's "Fast Flats" in the car in case it happened again so at least she wouldn't completely lose her balance and fall again--and totally freak the rest of the family out. Her being on dialysis and needing a new kidney has them on edge to begin with, but the slightest hint of something off sends them panicking.
But this family dysfunction was the quietest ever. It was subdued, polite, and well, quiet. It was odd. I almost felt like I was spending time with the wrong family. I know it's been a tough year for all of us in terms of health, but we've had our share of tough years. It was almost like we were all in partial turkey comas long before the birds were even fried. Quiet or not, though, I'm incredibly thankful and love the fact that I did get to see many of them--and just that fact makes this latest flare, partially dislocated hip and all--easier to bear. There'll be another chance at Christmas after all. :)
Thursday, November 15, 2012
Bad Policies/Poor Choices
When I returned to college a little over four years ago, I was aware of a few things: I might be putting myself into debt (possibly serious debt) for degrees that I may never use because my health would never improve enough to return to work; my doctors and I may have found that right combination of medication, exercise, and diet that would allow me to at least work in the field part time; and with everything I had gone through the previous 6+ years (well, honestly, my life until that point, but mostly since I had to leave the workforce), I knew I wanted to help others who were chronically ill.
Almost all doctors look at the physical self. How do they make that feel better? How to fix it? If it can't be fixed, as is the case sometimes, but rather at least controlled, how do you give the patient a comfortable "quality of life?" Even the specialists I have now, as amazing as they are, are more concerned with my symptoms, the diseases, the labs--the inner, physical workings. What gets lost is just how life changing something like this can be. I had a career. I had a life. Then all of that drastically changed in just a few short months.
I have yet to find a psychiatrist (misdiagnoses there aside as well) to understand, or psychologists to understand. I found one, but I realized the reason she understood was because she herself was sick--she had to leave the practice on permanent medical leave after about 12 weeks. In her place, I saw a young woman whose solution to everything was to take at least 90 minutes a day to myself and tell everyone not just how I'm feeling, but how they're making me feel and what I think about it. (All of my doctors laughed at that one.)
Community College went well. The school and my professors--all but one or two who eventually came around--worked with me and I graduated with an extremely high GPA and 2 AA degrees, honor society, and I had at least accomplished one goal. When transfer time came to finish my Bachelor's Degree, I was playing on a whole different field and the game had changed. I was forced to withdraw from entire semesters before the administration would allow me to finish at least one class if the professor would allow it; I learned that after a decade I did not have fibromyalgia and chronic Lyme Disease, but 2 autoimmune diseases that were by then pretty bad as far as out of control and wreaking havoc on my joints and surrounding tissues forcing a medical leave; and became the lab rat for the school.
Four year schools have disability offices to help students with disabilities receive the accommodations they need and help them navigate through any problems. Essentially, these offices become the advocates for and with the students. My school, however, has no idea how to help me. Autoimmune, or "invisible" illnesses are just not something they've ever dealt with before. Physical and learning disabilities are easy. There are policies and protocols for those. There are policies and protocols for everything: absences, time off, leave, withdrawals. Everything is very black and white, wrapped up in neat little packages. Which would be great, if say, I was in a wheelchair, needed crutches, or had a severe learning disability. Or had to take time off for a severe injury or something (the maximum time allowed for leave is 1 year--I'll get to that gem in a moment). I fall into that grey area and the school has admitted that I'm the first case they have had that they do not know how to handle. I have had to take time off to adjust to treatment, get my symptoms under control (almost there, but not quite yet), but I know that, just like before, there will be flares--times when I simply will not be able to make it to class because of pain and swelling. And there are policies against that both by professors and the school that punish students for that. If there were online classes offered, that would be awesome, but there aren't. It's too small of a school. And to transfer to a larger school, I'd get lost in the shuffle (not to mention the whole strong immunosuppressant, sitting in a classroom with 75+ other student thing--not good).
So here's where I am now: I was told that my leave time is up. I have to either register for classes next semester, when I'm physically not ready to return and seriously risk screwing up another semester and/or my GPA (a rocking 3.9), or withdraw from the school entirely and have to go through the application process all over again--which should be interesting, considering after all of the fighting, discrimination, and threats of lawsuits on my behalf, I don't know what my odds would be about returning. Ever. Or to another school, since I do have credits completed, and schools talk. I'm 3 semesters from graduation and whether I get to work in the field or not, it is a goal of mine to finish it, but to do it half assed isn't the way (re: return and tank my GPA). Or walk away now (risk closing that door), return to community, pursue an AS in chemistry (an old goal/love of mine and I'd still be going to school, making sure my brain doesn't atrophy), then hope to return to finish my BA. I just don't know. I find it grossly unfair that it is bad enough to be punished with a body that has turned against me, but to be punished by institutions for it out of ignorance makes me feel like more of an outcast. I'm not being paid for what I do. I'm paying them. I'm not asking for preferential treatment, or pity, or anything extra. I just didn't think asking to extend leave, or to be able to do the work (such as showing up/missing class) within the limits of what my body can handle was too much. Especially when I have proven for over 3 years that even when I am not in the classroom, my comprehension of the material far exceeds that of what is expected.
Almost all doctors look at the physical self. How do they make that feel better? How to fix it? If it can't be fixed, as is the case sometimes, but rather at least controlled, how do you give the patient a comfortable "quality of life?" Even the specialists I have now, as amazing as they are, are more concerned with my symptoms, the diseases, the labs--the inner, physical workings. What gets lost is just how life changing something like this can be. I had a career. I had a life. Then all of that drastically changed in just a few short months.
I have yet to find a psychiatrist (misdiagnoses there aside as well) to understand, or psychologists to understand. I found one, but I realized the reason she understood was because she herself was sick--she had to leave the practice on permanent medical leave after about 12 weeks. In her place, I saw a young woman whose solution to everything was to take at least 90 minutes a day to myself and tell everyone not just how I'm feeling, but how they're making me feel and what I think about it. (All of my doctors laughed at that one.)
Community College went well. The school and my professors--all but one or two who eventually came around--worked with me and I graduated with an extremely high GPA and 2 AA degrees, honor society, and I had at least accomplished one goal. When transfer time came to finish my Bachelor's Degree, I was playing on a whole different field and the game had changed. I was forced to withdraw from entire semesters before the administration would allow me to finish at least one class if the professor would allow it; I learned that after a decade I did not have fibromyalgia and chronic Lyme Disease, but 2 autoimmune diseases that were by then pretty bad as far as out of control and wreaking havoc on my joints and surrounding tissues forcing a medical leave; and became the lab rat for the school.
Four year schools have disability offices to help students with disabilities receive the accommodations they need and help them navigate through any problems. Essentially, these offices become the advocates for and with the students. My school, however, has no idea how to help me. Autoimmune, or "invisible" illnesses are just not something they've ever dealt with before. Physical and learning disabilities are easy. There are policies and protocols for those. There are policies and protocols for everything: absences, time off, leave, withdrawals. Everything is very black and white, wrapped up in neat little packages. Which would be great, if say, I was in a wheelchair, needed crutches, or had a severe learning disability. Or had to take time off for a severe injury or something (the maximum time allowed for leave is 1 year--I'll get to that gem in a moment). I fall into that grey area and the school has admitted that I'm the first case they have had that they do not know how to handle. I have had to take time off to adjust to treatment, get my symptoms under control (almost there, but not quite yet), but I know that, just like before, there will be flares--times when I simply will not be able to make it to class because of pain and swelling. And there are policies against that both by professors and the school that punish students for that. If there were online classes offered, that would be awesome, but there aren't. It's too small of a school. And to transfer to a larger school, I'd get lost in the shuffle (not to mention the whole strong immunosuppressant, sitting in a classroom with 75+ other student thing--not good).
So here's where I am now: I was told that my leave time is up. I have to either register for classes next semester, when I'm physically not ready to return and seriously risk screwing up another semester and/or my GPA (a rocking 3.9), or withdraw from the school entirely and have to go through the application process all over again--which should be interesting, considering after all of the fighting, discrimination, and threats of lawsuits on my behalf, I don't know what my odds would be about returning. Ever. Or to another school, since I do have credits completed, and schools talk. I'm 3 semesters from graduation and whether I get to work in the field or not, it is a goal of mine to finish it, but to do it half assed isn't the way (re: return and tank my GPA). Or walk away now (risk closing that door), return to community, pursue an AS in chemistry (an old goal/love of mine and I'd still be going to school, making sure my brain doesn't atrophy), then hope to return to finish my BA. I just don't know. I find it grossly unfair that it is bad enough to be punished with a body that has turned against me, but to be punished by institutions for it out of ignorance makes me feel like more of an outcast. I'm not being paid for what I do. I'm paying them. I'm not asking for preferential treatment, or pity, or anything extra. I just didn't think asking to extend leave, or to be able to do the work (such as showing up/missing class) within the limits of what my body can handle was too much. Especially when I have proven for over 3 years that even when I am not in the classroom, my comprehension of the material far exceeds that of what is expected.
Friday, November 9, 2012
Oh, Sandy
Early in the evening on October 29, the hybrid superstorm hurricane known as Sandy made landfall around Atlantic City, NJ. I'm about 120 miles northwest of there. In the days before, my mother and I made sure that we had everything we needed in case the power went out (which in our area does happen, considering it is a heavily wooded area that is poorly maintained by the power company) and when we lose power, we also lose heat and most importantly, running water. The radar pictures were both awesome and terrifying--800 miles across and 2,000 miles long--and the evening before captured an historic image of what was going to make Sandy such a superstorm--the powerful, energized cold front just to the west of it that was going to be absorbed into the storm. And, might I add, oh the pain as she came closer and hit!!
Then around 6pm we lost power that Monday. It had gone off twice earlier, but quickly came back on and had been flickering the rest of the day. For 11 days, we lived off of generator power. It was about 2 days before I got my first glimpses of what Sandy had done to the Jersey Shore, 4 days before we had heard from my uncle and cousins who live close to the shore, and an additional 2 before I heard from the rest of my friends. My brother? I heard about him through his ex. He still hasn't called my parents to see if they're okay. It's not like my mother wasn't almost rushed to the ER and still might end up back in the hospital or anything.
We were very lucky that we didn't suffer severe damage, but only some branches and power outages. For us, the challenge was to try to keep conditions as sanitary as possible and temperatures in the house as constant as possible. With my autoimmune diseases and powerful immunosuppressants, on a good day, stress alone causes wreaks havoc on what little immune system I have left now. My mother's immune system is also compromised because of renal failure. I seem to be lucky to only have a minor infection that I am carefully monitoring right now. My mother is a different story.
But I did learn some valuable things from all of this. I am much stronger than I thought I was. With very little sleep, I was able to keep the generator going, making sure that the most important things were taken care of around here (mom kept busy by cleaning stuff up around the house she had been putting off lately), checking with police departments' social networking pages for information, staying in touch with friends to make sure they were taken care of, keeping in touch with family, and finding a way to get through it all.
I also found it incredible that my close knit community of neighbors became closer as we took care of each other, sharing generators, gas, food, wood, information, checking in on each other, watching out for each other when vandalism and thefts started happening, and depending on who could get to what store, supplies.
What I did learn is that I need to find a way in case something like this happens again (extended power outage/stressful situation) is to try to find that balance so that I'm not putting my body into a further compromising position than it has to be. Our house was about as prepared as it could have been before my father found the bigger generator, but it took 7 or 8 days before I was able to find that center, or inner balance I needed for myself to continue to keep going. I realize that my old way of just shutting down, going into auto pilot and getting things done is not going to work--it barely worked now and it won't work in the future as my fever is rising and an infection is setting in. My body is just no able to do that anymore for any real length of time. But for now, I can't even begin to express just how thankful I am, my friends, and my family for having made it through all of it. And for those friends who were there. And I continue to pray for those still dealing with it as I try to get myself back on my feet.
Then around 6pm we lost power that Monday. It had gone off twice earlier, but quickly came back on and had been flickering the rest of the day. For 11 days, we lived off of generator power. It was about 2 days before I got my first glimpses of what Sandy had done to the Jersey Shore, 4 days before we had heard from my uncle and cousins who live close to the shore, and an additional 2 before I heard from the rest of my friends. My brother? I heard about him through his ex. He still hasn't called my parents to see if they're okay. It's not like my mother wasn't almost rushed to the ER and still might end up back in the hospital or anything.
We were very lucky that we didn't suffer severe damage, but only some branches and power outages. For us, the challenge was to try to keep conditions as sanitary as possible and temperatures in the house as constant as possible. With my autoimmune diseases and powerful immunosuppressants, on a good day, stress alone causes wreaks havoc on what little immune system I have left now. My mother's immune system is also compromised because of renal failure. I seem to be lucky to only have a minor infection that I am carefully monitoring right now. My mother is a different story.
But I did learn some valuable things from all of this. I am much stronger than I thought I was. With very little sleep, I was able to keep the generator going, making sure that the most important things were taken care of around here (mom kept busy by cleaning stuff up around the house she had been putting off lately), checking with police departments' social networking pages for information, staying in touch with friends to make sure they were taken care of, keeping in touch with family, and finding a way to get through it all.
I also found it incredible that my close knit community of neighbors became closer as we took care of each other, sharing generators, gas, food, wood, information, checking in on each other, watching out for each other when vandalism and thefts started happening, and depending on who could get to what store, supplies.
What I did learn is that I need to find a way in case something like this happens again (extended power outage/stressful situation) is to try to find that balance so that I'm not putting my body into a further compromising position than it has to be. Our house was about as prepared as it could have been before my father found the bigger generator, but it took 7 or 8 days before I was able to find that center, or inner balance I needed for myself to continue to keep going. I realize that my old way of just shutting down, going into auto pilot and getting things done is not going to work--it barely worked now and it won't work in the future as my fever is rising and an infection is setting in. My body is just no able to do that anymore for any real length of time. But for now, I can't even begin to express just how thankful I am, my friends, and my family for having made it through all of it. And for those friends who were there. And I continue to pray for those still dealing with it as I try to get myself back on my feet.
Sunday, October 7, 2012
It All Started When...
When I first went out of work ten years ago, I was a wreck. I had no idea what was going on. Neither did my primary doctor. As long as my tests were showing something was going on (but not what), he believed and knew I was sick, but had no idea what to do other than pain medication, muscle relaxers, and NSAIDS. And more tests. Scared was one way to put it. As my tests began to return to normal after steroid treatment, but my symptoms didn't, he began to think I just didn't want to return to work and I was a hypochondriac. So he sent me to a rheumatologist with whom he expected to tell me I was fine and to send me back to work. Three of them in fact. They all looked at the labs, the treatment, did a brief physical and came to the same conclusion: fibromyalgia. The first one pretty much said I was screwed. (Not quite like that, but there was no treatment, no cure, just that I would have to suck it up and deal basically. It wasn't ever going to get better). The second? Very similar, except if I had listened to him, I would be living off of a morphine drip for the rest of my life. Then I met the third. He wanted to run additional tests, but told me there are treatments to help control it (medications, exercise such as swimming, stretching, etc., a common sense diet approach [if it causes pain, don't eat it]), and many things that could help so that one day, I "might" be able to return to work." And he suspected that if I was predisposed to it, it was triggered by a virus that was going around in the area. I tested positive for the recent infection. Naturally, my primary was pissed and found a way to fire me as his patient, but I had an answer. I was still scared, still in incredible pain, but it was something.
I used to spend my mornings online before work talking to my best friend and occasionally in a chat room. I began searching online for information about fibromyalgia when I came across an online support group--a chat room that was for fibromyalgia and other invisible diseases. I was one of the youngest--if not the youngest--in the room, but I was able to find out more about the disease and autoimmune diseases (which I had no cause to think I had one then). Other than my mother and the small handful of friends who actually stayed around, no one understood or believed I was sick. I looked normal. Sometimes I almost acted normal. So why wasn't I working or living life like a normal 20 something? I must've been just lazy and liked painkillers. But it was in that forum I realized that they understood because they were living with the same problems I was. And we helped each other through a lot. And we listened. And laughed. And cried. Many of us never met personally, but we all knew each other. That was when I decided if I was ever able to work again, I wanted to help those with invisible illnesses. Because I understood. I still wanted to be a mechanic of course. (Which took me years to realize I couldn't be anymore).
My mother found a local support group a few minutes from my house a few months after my diagnosis. I learned quickly the difference between online communities/support groups and in person support groups. I went once. At least in this case, unless I had lost my house, my husband, my kids, everything I owned because of my disease, I had no reason to need a support group. I had only lost my career. I was too young. So I stuck with online groups. I always found it amazing how total strangers behind computer screens can be so supportive and caring towards others. I often find myself wondering how they're doing and why something like that rarely exists today.
I used to spend my mornings online before work talking to my best friend and occasionally in a chat room. I began searching online for information about fibromyalgia when I came across an online support group--a chat room that was for fibromyalgia and other invisible diseases. I was one of the youngest--if not the youngest--in the room, but I was able to find out more about the disease and autoimmune diseases (which I had no cause to think I had one then). Other than my mother and the small handful of friends who actually stayed around, no one understood or believed I was sick. I looked normal. Sometimes I almost acted normal. So why wasn't I working or living life like a normal 20 something? I must've been just lazy and liked painkillers. But it was in that forum I realized that they understood because they were living with the same problems I was. And we helped each other through a lot. And we listened. And laughed. And cried. Many of us never met personally, but we all knew each other. That was when I decided if I was ever able to work again, I wanted to help those with invisible illnesses. Because I understood. I still wanted to be a mechanic of course. (Which took me years to realize I couldn't be anymore).
My mother found a local support group a few minutes from my house a few months after my diagnosis. I learned quickly the difference between online communities/support groups and in person support groups. I went once. At least in this case, unless I had lost my house, my husband, my kids, everything I owned because of my disease, I had no reason to need a support group. I had only lost my career. I was too young. So I stuck with online groups. I always found it amazing how total strangers behind computer screens can be so supportive and caring towards others. I often find myself wondering how they're doing and why something like that rarely exists today.
Thursday, September 20, 2012
I Don't Know
"I don't know." "You're right." "I'm sorry." Three phrases that are very simple, but three of the hardest phrases for most humans to say. I can't think of anyone who is an exception to this rule. Myself included. Eventually, many of us sit back, reflect on our actions, and say any (or all) of these. But there's a difference in saying them or meaning them. Just like there are many different meanings behind those phrases. "I'm sorry" could simply be said to get out of trouble, but not be genuine; the same could be said for "you're right." "I don't know" could be said so that no further questions are asked, or so that someone doesn't have to look any deeper into themselves, or simply because that person just doesn't know. "I don't know" is also the scariest of the phrases depending on the use of the phrase because there is always a lot of unanswered questions, unknown scenarios, or just plain unknowns with that phrase. And everyone reacts differently.
A lot of what has happened in the past few days that has had me considering those phrases and much, much more. Insight from a friend (not entirely incorrect, either) has me thinking even more. Yes, I do tend to think sometimes before I fully think about how to say something, or think about how to word something differently (not everything comes across a computer screen, text message, or over the phone the same way it would in a face to face conversation) that leaves a lot of room for interpretation, out of sheer habit I go on the defensive (which has always been part of who I am--many reasons I am fully aware of and have been trying to work on, but still have a long way to go, others is just because of my general nature), and I have always been that kind of person who tries to fix things. I am also very emotional and a fighter--which can be both assets and liabilities. When someone goes after me, I try to look at all sides of the picture. Sometimes I know it's not personal--everyone needs an outlet because of what's going on in their own life. They lash out at everyone. I'm just as guilty at times. But others, I find it hard to stay silent and fight back. Except this last time it cost me. And I can't take it back anymore than I can take back the repercussions of it. I still haven't decided whether to continue my blog or not--or how often to blog, but for now, at least I'm choosing not to continue anything on my Facebook page, save check my messages now and then.
I honestly thought I was helping people, but I guess I really wasn't. I'm actually not sure what I was doing besides distracting myself and staying busy "re: distracted", since the only thing I can do as far as my health is concerned is to essentially sit back and wait. I'm doing everything right at the moment there, so it's a waiting game. So it's time to go back, look back over the past, nightmares included, and see what went wrong where. But at least I have some examples and some perspectives to look for.
A lot of what has happened in the past few days that has had me considering those phrases and much, much more. Insight from a friend (not entirely incorrect, either) has me thinking even more. Yes, I do tend to think sometimes before I fully think about how to say something, or think about how to word something differently (not everything comes across a computer screen, text message, or over the phone the same way it would in a face to face conversation) that leaves a lot of room for interpretation, out of sheer habit I go on the defensive (which has always been part of who I am--many reasons I am fully aware of and have been trying to work on, but still have a long way to go, others is just because of my general nature), and I have always been that kind of person who tries to fix things. I am also very emotional and a fighter--which can be both assets and liabilities. When someone goes after me, I try to look at all sides of the picture. Sometimes I know it's not personal--everyone needs an outlet because of what's going on in their own life. They lash out at everyone. I'm just as guilty at times. But others, I find it hard to stay silent and fight back. Except this last time it cost me. And I can't take it back anymore than I can take back the repercussions of it. I still haven't decided whether to continue my blog or not--or how often to blog, but for now, at least I'm choosing not to continue anything on my Facebook page, save check my messages now and then.
I honestly thought I was helping people, but I guess I really wasn't. I'm actually not sure what I was doing besides distracting myself and staying busy "re: distracted", since the only thing I can do as far as my health is concerned is to essentially sit back and wait. I'm doing everything right at the moment there, so it's a waiting game. So it's time to go back, look back over the past, nightmares included, and see what went wrong where. But at least I have some examples and some perspectives to look for.
Saturday, September 8, 2012
Did I Do That?
Ever since I was originally diagnosed with Fibromyalgia almost a decade ago, I never made it a secret. I did as much research as I could, I joined several support groups (mostly online), and I spread awareness of it, hoping to educate others that yes, it IS real, and yes, it can be extremely debilitating much of the time between the pain and fatigue. I was very open about medications my doctors tried me on, physical therapies, diets... The same held true all 9 times I was diagnosed with Lyme Disease. Then when my health really went south this year, I became more open as my neurologist realized that I have more than Fibromyalgia and I was thrown into "pin the tail on the diagnosis," going from one specialist to another, one test after another. I became friends with an awesome woman named Chris, who in turn asked me to help her start an awareness/activist page, which I continue to work on along with my blog. I see it this way: the more people who are aware of these "invisible illnesses," the less likely they are to judge us because we look just fine and some days we may even act just fine.
But after the other day, I find myself questioning my openness of that. It's very rare my parents get to go on vacation. Even rarer for me. So when my mother told me they were going away for a few days, I'm not sure who was more excited-them or me. For me, it meant I had a few days of the house to myself--nothing to do, silence, take out, relaxation at it's peak. And the vet told me how to deal with the dog's severe separation anxiety--some benadryl at night. Perfect! The only thing I had to do (well, not had to, but it should've been 2 hours tops) was take my car to the mechanics for diagnostics and an estimate for an ABS sensor, new tires, and find out why my airbag light is on. It was a LOT more than I expected, but eh, it happens. (And I won't even talk about how I called the school to straighten out another miscommunication and how Starbucks screwed up my iced coffee).
But when I got home, I had a screaming headache from being out in the hot sun in long sleeves, the stress of having an estimate a few hundred dollars more than I expected, and just stress in general, so I ran downstairs to change into shorts and a tank top, not paying much attention. That's when I noticed the back door was slightly open. I didn't think much about it because I open and close the door a few times a day. Maybe I didn't close it all the way, or closed it too hard and it bounced back earlier. I closed it and came back upstairs to discover the dog had eaten both scones I just bought... Almost 7 hours later, I let the dog out before I went to bed and noticed the screen at the front door was pushed in and torn and remembered the back door. Someone was in the house while I was out. After the police showed up, I went downstairs and started looking around. Several of my drawers were open, my jewelry box was overturned, my safe was open, and my pain medication was gone. They never made it upstairs--probably because of the dog.
Nothing else was stolen, though. No jewelry, nothing. Just my pills. It makes me wonder if in my effort to be honest with others and spread awareness, if I didn't somehow invite someone into my home. Many of us with chronic pain illness take pain medications, muscle relaxers, anxiety medications.... sadly, it's not uncommon for family members to steal those medications to get high themselves or sell them on the street, but it does make me wonder just how open does it make us to scumbags in our own community who know we're sick, know we take these medications, and wait for that opportunity like the other day with me? I mean, what if my mother was home? Or if I didn't have the gate up and my dog got downstairs and they were armed? Would they have killed my dog? Or I was home and it was one of those rare days that I had taken my pain meds and the meds had disoriented me? I don't really want to think about it... bad enough I'm washing all of my clothing because some stranger touched it. And my bedding. And I'm scrubbing down all of my furniture and possessions as well.
But after the other day, I find myself questioning my openness of that. It's very rare my parents get to go on vacation. Even rarer for me. So when my mother told me they were going away for a few days, I'm not sure who was more excited-them or me. For me, it meant I had a few days of the house to myself--nothing to do, silence, take out, relaxation at it's peak. And the vet told me how to deal with the dog's severe separation anxiety--some benadryl at night. Perfect! The only thing I had to do (well, not had to, but it should've been 2 hours tops) was take my car to the mechanics for diagnostics and an estimate for an ABS sensor, new tires, and find out why my airbag light is on. It was a LOT more than I expected, but eh, it happens. (And I won't even talk about how I called the school to straighten out another miscommunication and how Starbucks screwed up my iced coffee).
But when I got home, I had a screaming headache from being out in the hot sun in long sleeves, the stress of having an estimate a few hundred dollars more than I expected, and just stress in general, so I ran downstairs to change into shorts and a tank top, not paying much attention. That's when I noticed the back door was slightly open. I didn't think much about it because I open and close the door a few times a day. Maybe I didn't close it all the way, or closed it too hard and it bounced back earlier. I closed it and came back upstairs to discover the dog had eaten both scones I just bought... Almost 7 hours later, I let the dog out before I went to bed and noticed the screen at the front door was pushed in and torn and remembered the back door. Someone was in the house while I was out. After the police showed up, I went downstairs and started looking around. Several of my drawers were open, my jewelry box was overturned, my safe was open, and my pain medication was gone. They never made it upstairs--probably because of the dog.
Nothing else was stolen, though. No jewelry, nothing. Just my pills. It makes me wonder if in my effort to be honest with others and spread awareness, if I didn't somehow invite someone into my home. Many of us with chronic pain illness take pain medications, muscle relaxers, anxiety medications.... sadly, it's not uncommon for family members to steal those medications to get high themselves or sell them on the street, but it does make me wonder just how open does it make us to scumbags in our own community who know we're sick, know we take these medications, and wait for that opportunity like the other day with me? I mean, what if my mother was home? Or if I didn't have the gate up and my dog got downstairs and they were armed? Would they have killed my dog? Or I was home and it was one of those rare days that I had taken my pain meds and the meds had disoriented me? I don't really want to think about it... bad enough I'm washing all of my clothing because some stranger touched it. And my bedding. And I'm scrubbing down all of my furniture and possessions as well.
Saturday, September 1, 2012
I haven't written anything in awhile (and what I have written before the break wasn't really much of anything, except for a few decent blogs) because a lot of things have been happening at once in addition to adjusting to the new medications, allowing my diagnosis to sink in (along with accepting it and letting go of the anger that comes along with it when you find out that the specialist you have trusted for 10 years was completely wrong--whether it was out of sheer ignorance and stupidity the entire time, or fear of a malpractice suit after a certain length of time because there was just too much evidence piling up that really couldn't be explained away, I don't know), and dealing with a multitude of external stressors that I have very little control over. For the most part, it has been those external goings on that have hindered my blogging. While much of it affects my life, and to an extent my health, it's trying to figure out that fine line what should be written about versus what should remain inside or in a private journal offline. In many ways, I feel that I cannot be totally honest with any of my readers in explaining how I live and deal with my illness when there is so much else going on at the same time that affects my life, but say very little about what much of my life is really like. On the other hand, some things are also not my place to tell, no matter how much they affect me. I will resume my writing more regularly as I work through all of this and find a compromising medium. But for now, my blogs will most likely continue to be irregular.
Monday, August 13, 2012
"That Doesn't Make Sense"
"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..
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..
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?
Sunday, July 29, 2012
Splitting the Difference
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...
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...
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.
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