So yesterday was the conclusion of my “Cleveland Adventures”. After driving out there in the pouring rain for most of the trip, I had a rather uneventful appointment with my CC Dr. It wasn’t completely pointless as I’d feared, because she did explain MCTD some more so I have a better understanding of what it is and know a little better what to expect. Although, the very nature of MCTD is the fact that it has no specific features or symptoms of its own, but instead includes a combination of symptoms and manifestations of a variety of other connective tissue diseases: RA, Lupus, Scleroderma, and Polymyositis (some people also include Sjogrens). For me it’s mostly RA and Lupus.
We also discussed treatment options. However, because I had already discussed with her the fact that I can’t keep driving out there—I have to take an entire day off work, not to mention gas is ridiculously priced right now—she didn’t prescribe anything. She has a rule about seeing patients for follow-up when she prescribes medications so she is sending my dr. here in Erie her recommendations.
Basically, she’s convinced that the Plaquenil is my best option. Apparently, she’s not convinced that any of the problems I listed were actually connected to my Plaquenil use—she said I wasn’t on it long enough for me to be having any type of vision or other problems. It apparently doesn’t matter that a few days after I stopped taking it things got better and eventually seemed to go back to normal. I think she believes I was overreacting and being a touch paranoid…but whatever, I’m pretty sure I’m the best judge of what symptoms/problems I was actually experiencing. Anyway, she believes that if I try the brand name version of the medication, I should be able to tolerate it better and she believes it’s my best option to decrease flare-ups and put it into “remission”.
Right now, all of my clinical features are lupus related, so she doesn’t feel that going back on the Enbrel would be beneficial—as it’s an RA medication and not for the treatment of lupus. If the Plaquenil doesn’t work, she suggests I try Methotrexate (MTX) or Imuran. I’ve taken MTX before, was on it for a few years in fact, and while it worked for a while, I’m not exactly crazy about going back on it. MTX is a form of chemo, and while the doses an RA/lupus patient use are much lower doses, it still makes me nervous. I’d very much like to have kids one day, and even with the folic acid, there were still some serious hair loss issues. Thankfully, I’ve always had thick hair, so it wasn’t really that noticeable, but pulling out handfuls of hair in the shower is disheartening regardless of how little it shows or how much you have left. I don’t know much of anything about Imuran, so I guess I have some research to do, but she did say that its very similar to MTX, so who knows…
I guess my next step is to call my dr here in Erie…who I just saw two weeks ago…and see if he wants to see me sooner than my next scheduled appointment in June. It doesn’t seem that continuing with just my current course of treatment was something she recommends, as she suggested adding any of three other medications to help control and try to eliminate the recurring flare-ups that I’ve been having the last year or so. So, that’s basically all I know so far…I’ll keep you posted!
As a side note: if you noticed on the sidebar, I’ve listed a bunch of RA and Lupus related blogs that I like to follow. Two of my favorites would have to be The Single Gal’s Guide to Rheumatoid Arthritis by Sara Nash and A Chronic Dose: A Blog about Chronic Illness, Healthcare and Writing by Laurie Edwards. I’m currently reading through Laurie’s book Life Disrupted: Getting Real about Chronic Illness in Your Twenties and Thirties. It’s a great book and I highly recommend it. She has a very honest and relatable way of communicating what it is we’re going through as young adults facing, and living, with chronic illness. She’s also very open about her own personal life and shares a lot about her own experiences with dr’s, treatments and life in general following her own diagnosis. It’s definitely a must read!
Saturday, March 27, 2010
Thursday, March 25, 2010
"Normal" is a relative term, right?
So, it’s been a few weeks since I posted on my amazingly wonderful week. It's been awhile, because the fun didn't end there...it just got better... After sticking it out for the rest of the week...and hibernating for the weekend...I once again, crawled out of bed and dragged myself to work. By this time I'd had some serious sinus issues and was coughing on a regular basis...fun stuff right? Apparently, not fun enough.... By the end of the day, I was so miserable, I had already called my dr--two of them in fact, because one wanted the advice of the other before treating me. Yeah, it was awesome. I was advised to go to the ER--neither of them wanted to play around with my fun symptoms. At this point I should probably mention that not only was out of my mind tired, but at this point was also having trouble breathing--shortness of breath and it hurt to take a deep breath...or cough...or laugh... So, knowing that going to the ER was seriously going to cost me....I decide to go to Urgent Care. Who after collecting my copay, making me wait for over 20 min, and taking vitals, told me that they weren’t equipped to run lab tests and all they could do for me was take a chest x-ray--and I should really go to the ER. They were also concerned because my heart rate was really high--they checked it three different times and it was between 125 and 133 each time. Awesome--could they not have told me that before wasting my time and copay? Seriously...So off we go to the ER--I should mention that my younger brother was home from school on spring break and was being amazing and driving me around--because he's thoughtful like that. And because my mom had to work, and she didn’t want me driving myself--not sure why, but whatever. I did have to pick him up from the ER once at 1am after he "broke his butt" pulling some stunt at the Peak on his snow board...so I guess we're even. :)
Anyway, after the initial check in, we settle in the waiting room for what appears to be a good wait. An hour later they call me back--not to be seen, because they weren't to me yet, but because my heart rate was so high they wanted to be sure it hadn’t gotten worse while I was out there waiting, apparently, that would get you priority. It hadn't gone up (or down either) so back to the waiting room I go...for another hour and a half. When I finally get back there, and get to change into the awesome hospital gown...seriously, they can't come up with something that will close in the back?...the nurse comes in and takes all my vitals again. After a while the dr comes back and the fun begins. I'm going through my last week and such and explaining that I have RA and MCTD--and he actually seemed to know what that is! And listing the different medications I was on...and explaining that I'd discontinued the Plaquenil that Saturday, and why. ( I was having some blurry vision issues and some serious pressure around the eyes, putting in my contacts was even painful--not to mention the nausea) They get the chest x-ray from urgent care, and he tells me that he's not sure if they'll run any blood work or not, he hadn't yet decided, but he wanted me to have an EKG because of the heart rate issue. After that the nurse comes back to put in an IV, they were going to give me a CAT scan, with the reactive dye to check for blood clots in my lungs. Before they do this though, they need to be absolutely positive I'm not pregnant....Apparently not everyone believes its possible for a 26 year old to be a virgin...whatever... So they send me down the hall to the bathroom (in the amazing flowy nonclosing hospital gown) to pee in a cup. If having that stupid gown, three sizes too big and all over the place was not bad enough, they still had lines from the vitals machine that they didn’t detach but unplugged hanging down as well as my IV line...so needless to say that was an adventure... So after they had confirmed that I had not immaculately conceived, I was detached again and wheeled around to x-ray for the CAT scan. Once back in my room a Phlebotomist comes back to draw some blood. After a while (by this point the IV bag was pretty much empty, so it had been awhile...) the dr came back to tell me that my CAT scan was clear and I didn't have any clots, and they didn’t notice anything on the chest x-ray, so they think I just have a serious sinus infection. He also told me that my blood work showed some irregularities in my kidney function that was most likely caused by my connective tissue disorder. He wrote me a script for a Z-pack, gave me orders for more blood work to do in two days to check my kidneys again, and told me to follow up with both my PCP and my Rheumatologist.
I wasn’t much phased by this new development, and after getting home at 2am and finally getting to bed, I actually got up in the am to drop off my rx on the way to work...yup, I still went...Another miserable day at the office...to which I eventually gave up and went home around 2:30 when I seriously had depleted my last drop of energy. I also told my boss that I would not be in the next day either. After staying home all day Wednesday...bored out of my mind I might add...I went back to work Thursday. All in all, a crazy and tiring week. Now, two weeks later, I'm feeling back to normal--or at least, my version of normal. Tomorrow is my follow-up appointment at the Cleveland Clinic. I'm worried that they will try to put me on another medication and then insist on seeing me again for another follow-up. Its insane having to take an entire day off to drive out there (it takes 2 hours) not to mention the gas money...not to mention the CC itself is ridiculously expensive. I managed to hit my $750 deductible by Feb 4th...seriously...that’s insane...35 days and I'd already surpassed it...So, yeah...while I may only have my copay to worry about since I've already satisfied my deductible...I'd still rather not waste my time and my gas money driving all over creation when I have a perfectly fine dr right here in Erie. Have I mentioned I'm using my last sick day to go out there tomorrow? Yeah, so I'd really rather not have to go again. So here's hoping...
Anyway, after the initial check in, we settle in the waiting room for what appears to be a good wait. An hour later they call me back--not to be seen, because they weren't to me yet, but because my heart rate was so high they wanted to be sure it hadn’t gotten worse while I was out there waiting, apparently, that would get you priority. It hadn't gone up (or down either) so back to the waiting room I go...for another hour and a half. When I finally get back there, and get to change into the awesome hospital gown...seriously, they can't come up with something that will close in the back?...the nurse comes in and takes all my vitals again. After a while the dr comes back and the fun begins. I'm going through my last week and such and explaining that I have RA and MCTD--and he actually seemed to know what that is! And listing the different medications I was on...and explaining that I'd discontinued the Plaquenil that Saturday, and why. ( I was having some blurry vision issues and some serious pressure around the eyes, putting in my contacts was even painful--not to mention the nausea) They get the chest x-ray from urgent care, and he tells me that he's not sure if they'll run any blood work or not, he hadn't yet decided, but he wanted me to have an EKG because of the heart rate issue. After that the nurse comes back to put in an IV, they were going to give me a CAT scan, with the reactive dye to check for blood clots in my lungs. Before they do this though, they need to be absolutely positive I'm not pregnant....Apparently not everyone believes its possible for a 26 year old to be a virgin...whatever... So they send me down the hall to the bathroom (in the amazing flowy nonclosing hospital gown) to pee in a cup. If having that stupid gown, three sizes too big and all over the place was not bad enough, they still had lines from the vitals machine that they didn’t detach but unplugged hanging down as well as my IV line...so needless to say that was an adventure... So after they had confirmed that I had not immaculately conceived, I was detached again and wheeled around to x-ray for the CAT scan. Once back in my room a Phlebotomist comes back to draw some blood. After a while (by this point the IV bag was pretty much empty, so it had been awhile...) the dr came back to tell me that my CAT scan was clear and I didn't have any clots, and they didn’t notice anything on the chest x-ray, so they think I just have a serious sinus infection. He also told me that my blood work showed some irregularities in my kidney function that was most likely caused by my connective tissue disorder. He wrote me a script for a Z-pack, gave me orders for more blood work to do in two days to check my kidneys again, and told me to follow up with both my PCP and my Rheumatologist.
I wasn’t much phased by this new development, and after getting home at 2am and finally getting to bed, I actually got up in the am to drop off my rx on the way to work...yup, I still went...Another miserable day at the office...to which I eventually gave up and went home around 2:30 when I seriously had depleted my last drop of energy. I also told my boss that I would not be in the next day either. After staying home all day Wednesday...bored out of my mind I might add...I went back to work Thursday. All in all, a crazy and tiring week. Now, two weeks later, I'm feeling back to normal--or at least, my version of normal. Tomorrow is my follow-up appointment at the Cleveland Clinic. I'm worried that they will try to put me on another medication and then insist on seeing me again for another follow-up. Its insane having to take an entire day off to drive out there (it takes 2 hours) not to mention the gas money...not to mention the CC itself is ridiculously expensive. I managed to hit my $750 deductible by Feb 4th...seriously...that’s insane...35 days and I'd already surpassed it...So, yeah...while I may only have my copay to worry about since I've already satisfied my deductible...I'd still rather not waste my time and my gas money driving all over creation when I have a perfectly fine dr right here in Erie. Have I mentioned I'm using my last sick day to go out there tomorrow? Yeah, so I'd really rather not have to go again. So here's hoping...
Thursday, March 4, 2010
A fight I can't win?
For the last three days, I've felt like complete crap. The temps haven't gone above 101.8 but the lowest they've gotten--even with taking those horse pills of IBU the dr gave me--is 99.8. I hurt everywhere. I'm exhausted. And I just want to cry. I don't know how long it will last. I don't know how bad it will get. I don't even know much about the silly disease eating away at me. Little by little, it’s as though the hope seems to fade. Like I'll never have a normal life. A husband that chose me knowing what I have. Having kids and being able to play with them and enjoy their childhood. My family is awesome. They're supportive. They love me. But they don't understand. Granted, that hypothetical husband isn't going to understand it much better. It's just so hard going through the day to day, knowing things can only get worse. That it will get worse. Unless some brilliant Dr. or researcher comes up with some miracle cure of the unknown, things will only decline with time. Unless God decides to heal me, I'm looking at being stuck with this for the rest of my life. I know He can do it. Nothing is impossible with God. I know that. I believe that. I just know and understand that he doesn’t have to. This is the life he gave me. I don't understand why, I don't know how he will choose to use it. But I know it’s a part of his plan for my life. Knowing that, doesn’t make it any easier.
I try to seem normal. I try not to complain. I try not to whine. But sometimes I just feel so horrible I want to do nothing but sleep and wait for it to be over. For the last three days, I've gotten up and gone to work. I've been popping IBU on cue every four hours. I've been checking my temp--when no one is looking--and at the end of the day, I go home and crash. I crank up the electric blanket watch some TV for a couple of hours--till that last dose of IBU--and go to bed. Usually before 9:00. I go to sleep with a temp, I wake up with a temp. I go through my day, trying not to overdo it, knowing it’s too late and trying to act as normal as possible. I made a couple random comments about not feeling that well this morning--as two good friends and coworkers helped me put together my new desk. I got a sub for nursery Wednesday night. My mom hasn't said much about the extra sleep, it never really seems to feel that she understands how bad it is. And I know that’s my fault. I don't talk about it until I can't handle it anymore. When all I can do is go to bed and sleep. It seems like it came out of nowhere. Sometimes it does. Unless you have MCTD or something ridiculously similar--you can't understand what its like. It’s not your grandma's arthritis pain. It’s not like the flu. It slowly sucks everything out of you, and feels like it'll never stop.
I don't talk about it for a variety of reasons. People not being able to understand it is only one of them. I don't want to be a statistic--it’s a rather low number, being it's a rare condition--but I don't want to be a number. I don't want to be remembered as the sick girl. I don't want people's pity. I don't want to admit defeat. I won't let myself give up. I won't let this disease take my future--whatever it may hold. I won't let it hold me back from what God has for me. What I know can happen. I'm fighting--everyday--to feel like I belong, like I fit in. Like I'm normal. I'm fighting back. I am a person with a personality that, while shaped by my disease, is independent of it. I have goals and dreams and hope that I'm not ready--and very unwilling--to let go of. I won't let the disease rob me of a sense of life, feeling of fulfillment, or let it stop me from succeeding. So, I get up everyday, and I fight back. It may be a fight I never win, but I still try. Because if you give up the fight, you're letting go of hope. And I refuse to believe that this is it. God has more in store for my life than this. He's promised never to give us more than we can bear. It’s not something we can do on our own. It takes a strength that only he can provide, sometimes he carries us along. But he hasn’t forgotten me. He's there--I know it, I believe it, I can feel it. So I'm trudging along, knowing it will get better. Hoping for tomorrow. Waiting for His plan, and my own happy ending whatever it may hold.
I try to seem normal. I try not to complain. I try not to whine. But sometimes I just feel so horrible I want to do nothing but sleep and wait for it to be over. For the last three days, I've gotten up and gone to work. I've been popping IBU on cue every four hours. I've been checking my temp--when no one is looking--and at the end of the day, I go home and crash. I crank up the electric blanket watch some TV for a couple of hours--till that last dose of IBU--and go to bed. Usually before 9:00. I go to sleep with a temp, I wake up with a temp. I go through my day, trying not to overdo it, knowing it’s too late and trying to act as normal as possible. I made a couple random comments about not feeling that well this morning--as two good friends and coworkers helped me put together my new desk. I got a sub for nursery Wednesday night. My mom hasn't said much about the extra sleep, it never really seems to feel that she understands how bad it is. And I know that’s my fault. I don't talk about it until I can't handle it anymore. When all I can do is go to bed and sleep. It seems like it came out of nowhere. Sometimes it does. Unless you have MCTD or something ridiculously similar--you can't understand what its like. It’s not your grandma's arthritis pain. It’s not like the flu. It slowly sucks everything out of you, and feels like it'll never stop.
I don't talk about it for a variety of reasons. People not being able to understand it is only one of them. I don't want to be a statistic--it’s a rather low number, being it's a rare condition--but I don't want to be a number. I don't want to be remembered as the sick girl. I don't want people's pity. I don't want to admit defeat. I won't let myself give up. I won't let this disease take my future--whatever it may hold. I won't let it hold me back from what God has for me. What I know can happen. I'm fighting--everyday--to feel like I belong, like I fit in. Like I'm normal. I'm fighting back. I am a person with a personality that, while shaped by my disease, is independent of it. I have goals and dreams and hope that I'm not ready--and very unwilling--to let go of. I won't let the disease rob me of a sense of life, feeling of fulfillment, or let it stop me from succeeding. So, I get up everyday, and I fight back. It may be a fight I never win, but I still try. Because if you give up the fight, you're letting go of hope. And I refuse to believe that this is it. God has more in store for my life than this. He's promised never to give us more than we can bear. It’s not something we can do on our own. It takes a strength that only he can provide, sometimes he carries us along. But he hasn’t forgotten me. He's there--I know it, I believe it, I can feel it. So I'm trudging along, knowing it will get better. Hoping for tomorrow. Waiting for His plan, and my own happy ending whatever it may hold.
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