A friend of mine shared this article, "Obama's Plan to Change U.S. Health Care System Will Cost Nearly Two TRILLON Dollars". First of all, "trillion" is spelled wrong ... I'm supposed to take this article seriously? Now, generally, I like Dr. Mercola - he often offers very practical advice. However, this article tells me that he's fallen from his Common Sense Pedestal, clearly drug down by the added weight of Ron Paul in his pocket.
"One of the problems in our current system, he says, is the lack of competition, partly due to too much government intervention." The only lack of competition is among drug companies - there are plenty of insurance companies, plenty of care providers ("conventional" and "alternative"). What's lacking is regulation of the insurance companies & costs. I'm not saying the Obama Healthcare Plan is perfect, and I usually agree with Dr. Mercola, but this article is full of broad, propaganda statements. "There is NO PILL that can make you healthier!" As someone who took charge of her health and tried every AFFORDABLE alternative therapy I could manage, I DO take a pill that makes me healthier (8/week) - much more so than any of the alternative therapies I tried over 4 years - my disease just kept worsening. As for the doctors leaving "in droves" maybe if more of them hadn't gotten into it to make big $, if they had more of a backbone & stayed true to "wanting to help people," "alternative" medicine would be more norm. (Dr. M should have drawn much more focus on Pamela Wible than Ron Paul.) Historically, holier-than-thou physicians created this mess by convincing people that they didn't know how to keep themselves healthy - the demise of natural childbirth, the "fear" that has been ingrained in women in the past 80 years (a monumental change in America in less than a century), is an under-appreciated example of this. We aren't dirt-poor, but we live barely better than check-to-check, sacrificing to raise our children into productive and responsible citizens, and can't afford basic medical care (or even many "alternative" treatments) for my disease because of unregulated insurance companies and greedy physicians - a disease that affects well over a million people in the US alone. I'm a drop in the pond of people in the same situation.
Thursday, July 2, 2009
Wednesday, July 1, 2009
Here, Piggy Piggy Piggy
I'd gone off the Ketoprofen with the doctor's okay. I've been quite proud of myself, too. Sure, I admit I've taken it a few times on an as-needed basis. I'm not "reliant" on it like I was for 4+ years, and that - at least to me - is something worthy of cheers.
I've been doing things in the last few months, pushing myself perhaps, things that I have been unable to do in several years. I planted some new flowers in my flower bed. I even constructed a new small wildflower bed for my youngest child. (I enlist the help of my husband and kids, but I'm doing a lot of the work I couldn't before.) I've gotten in the floor to play with my sweet baby niece, and I didn't get stuck there waiting for someone to pull me off the ground. The doctor has warned me, specifically with my hands, that I need to take it easy. That means, activity = pain. As much pain as I have felt over the course of my disease progression, not to mention the emotional distress of the disease and sudden (and gradual) lack of mobility, I am confident I can deal with the pain in exchange for the ABILITY to do these things.
A couple of days ago, I was standing in my house, talking to one of my kids, and I must have shifted my weight because I heard and felt a big pop in my left knee and left foot/ankle. (It didn't hurt.) Popping has been occurring more and more, which is another thing that seems "normal" to me again. My joints have always readily (and often involuntarily) popped. (I cannot bring myself to actually purposely pop any of my fingers for fear that I will faint from the shock of it.) Despite it not hurting in the moment, bedtime was another story. Both the knee and foot were aching, but not enough for me to get out of bed to take a pain med or anti-inflammatory - I was too sleepy. The morning of my next doctor visit, I could hardly bear weight on my foot when I woke up. Dammit, should have taken the ketoprofen. Fortunately, I had to get a few things done before shuffling the kids off and going to the doctor, so I pushed through the pain and within minutes my foot was feeling better - not healed, but better. I noticed that the more I walked, the less pain there was. After sitting for a few minutes, getting up and bearing weight hurt again. I had to drive to the doctor's office, so - despite my best efforts to appear normal - I hobbled into the office where my chipper nurse noticed right away that I was limping.
The consensus of both nurse and doctor was I shouldn't be off the ketoprofen. DAMMIT. Doc's logic was that I started the study taking it, and since I was actually having pain while in the office (first time for that in a while), that could be mistakenly attributed to "the study drug" rather than the lack of a med I had been certainly-taking. She wants me to take it through the course of the study so as not to "muddy the study results". That was a big, fat reminder of my status as a Guinea Pig.
My labs from last visit were all "great" and I really think I will wait until the next visit before I fully cave to resuming the ketoprofen. I'll take it more often between now and then, but not every day. I don't need it every day, and even if they aren't confident in that, I am. I know that something - either just the MTX or the MTX/study drug combination - is enabling me to be active again. I am fully aware that it is easy for me to overdo things, and to expect pain after certain activity (like a normal person). I am still reliant on a medication, but it's giving me so much more than the ketoprofen alone did, I'm okay with it.
I've been doing things in the last few months, pushing myself perhaps, things that I have been unable to do in several years. I planted some new flowers in my flower bed. I even constructed a new small wildflower bed for my youngest child. (I enlist the help of my husband and kids, but I'm doing a lot of the work I couldn't before.) I've gotten in the floor to play with my sweet baby niece, and I didn't get stuck there waiting for someone to pull me off the ground. The doctor has warned me, specifically with my hands, that I need to take it easy. That means, activity = pain. As much pain as I have felt over the course of my disease progression, not to mention the emotional distress of the disease and sudden (and gradual) lack of mobility, I am confident I can deal with the pain in exchange for the ABILITY to do these things.
A couple of days ago, I was standing in my house, talking to one of my kids, and I must have shifted my weight because I heard and felt a big pop in my left knee and left foot/ankle. (It didn't hurt.) Popping has been occurring more and more, which is another thing that seems "normal" to me again. My joints have always readily (and often involuntarily) popped. (I cannot bring myself to actually purposely pop any of my fingers for fear that I will faint from the shock of it.) Despite it not hurting in the moment, bedtime was another story. Both the knee and foot were aching, but not enough for me to get out of bed to take a pain med or anti-inflammatory - I was too sleepy. The morning of my next doctor visit, I could hardly bear weight on my foot when I woke up. Dammit, should have taken the ketoprofen. Fortunately, I had to get a few things done before shuffling the kids off and going to the doctor, so I pushed through the pain and within minutes my foot was feeling better - not healed, but better. I noticed that the more I walked, the less pain there was. After sitting for a few minutes, getting up and bearing weight hurt again. I had to drive to the doctor's office, so - despite my best efforts to appear normal - I hobbled into the office where my chipper nurse noticed right away that I was limping.
The consensus of both nurse and doctor was I shouldn't be off the ketoprofen. DAMMIT. Doc's logic was that I started the study taking it, and since I was actually having pain while in the office (first time for that in a while), that could be mistakenly attributed to "the study drug" rather than the lack of a med I had been certainly-taking. She wants me to take it through the course of the study so as not to "muddy the study results". That was a big, fat reminder of my status as a Guinea Pig.
My labs from last visit were all "great" and I really think I will wait until the next visit before I fully cave to resuming the ketoprofen. I'll take it more often between now and then, but not every day. I don't need it every day, and even if they aren't confident in that, I am. I know that something - either just the MTX or the MTX/study drug combination - is enabling me to be active again. I am fully aware that it is easy for me to overdo things, and to expect pain after certain activity (like a normal person). I am still reliant on a medication, but it's giving me so much more than the ketoprofen alone did, I'm okay with it.
Friday, May 8, 2009
So long, Ketoprofen!
When I had my third infusion (1st of 2 this second round) last week, I decided it would be the perfect time to try to go off Ketoprofen. I have been taking it for 4 and a half years, once at bedtime, to fend off morning stiffness. The last time I stopped taking it was during the study screening last fall. I was absolutely miserable and my body was pretty much useless. The times in the past when I have forgotten to take it, I would wake in the middle of the night, begging and crying for my husband to please bring it to me with a drink of water. NOT ANYMORE! I am thrilled to announce that, after a full week without it, I am fine without it. So, whether it's just the MTX or the MTX/okra combination, it's doing something right. My last labs were "very good" ... my weight is NORMAL (hooray!) ... inflammation levels are down. If it weren't for the damage already done, a stranger might not even know I have RA. Go, me!
Thursday, March 26, 2009
my hands
It's been 5 months since my initial Okra-or-Placebo infusion. The next one is a month from now. I've been taking MTX and Folic Acid for almost 6 months. The doc gave me Tylenol 3 for any aches that weren't being handled. It made me groggy so she gave Ultram instead. I've only needed anything like that a couple of times, and honestly I just took it because it was there; I could have dealt with it but was really just not motivated to do that. I am seriously considering taking myself off the Ketoprofen for a few days to see if I really need it. I hope I don't. I feel so much better now than I have been in early spring in 4 years. Feeling better isn't always the same as getting better, though.
(4 years and 2 months after diagnosis)
I noticed that some of the surveys I have to complete for the study have pages of questions about emotional aspects of my life. The practical side of me suspects these are C-Y-A questions the drug manufacturer must pay attention to, given the dramatic mental/emotional side effects of various drugs. The Bohemian side of me wants to believe that they are asking because they care about my well-being, that they know what it feels like to look at my 35-year-old hands and feel like I do. Isn't emotional distress a given with this disease? Being the over-thinker that I am, I am constantly questioning whether The Blues I feel sometimes are as natural as my disease (did I just say that?), or a side effect of medicine, or my age ("Advanced Maternal Age" as I'd be defined in an OB's office, as if), or something else I can't even think of.
I am concluding that my ever-growing interest in and need for body art is not only cathartic but grows from the demise of my hands. Long story short, my father was absent a big part of my life, but told me he'd always remembered my "lovely hands" during his absence, that they were etched in his memory because that was the first part of me he ever saw when I was born, that they hadn't changed in all the years. Somewhere along the line, I stopped thinking of my father every time I looked at my hands, and instead of feeling love and sadness for him, I am embarrassed and weak, and ugly. If I can counter that with a meaningful, permanent and beautiful reminder for myself, what's the harm? It can't be any more offensive than my knobby claws.
(4 years and 2 months after diagnosis)I noticed that some of the surveys I have to complete for the study have pages of questions about emotional aspects of my life. The practical side of me suspects these are C-Y-A questions the drug manufacturer must pay attention to, given the dramatic mental/emotional side effects of various drugs. The Bohemian side of me wants to believe that they are asking because they care about my well-being, that they know what it feels like to look at my 35-year-old hands and feel like I do. Isn't emotional distress a given with this disease? Being the over-thinker that I am, I am constantly questioning whether The Blues I feel sometimes are as natural as my disease (did I just say that?), or a side effect of medicine, or my age ("Advanced Maternal Age" as I'd be defined in an OB's office, as if), or something else I can't even think of.
I am concluding that my ever-growing interest in and need for body art is not only cathartic but grows from the demise of my hands. Long story short, my father was absent a big part of my life, but told me he'd always remembered my "lovely hands" during his absence, that they were etched in his memory because that was the first part of me he ever saw when I was born, that they hadn't changed in all the years. Somewhere along the line, I stopped thinking of my father every time I looked at my hands, and instead of feeling love and sadness for him, I am embarrassed and weak, and ugly. If I can counter that with a meaningful, permanent and beautiful reminder for myself, what's the harm? It can't be any more offensive than my knobby claws.
Wednesday, January 14, 2009
So long "underweight", hello "normal" ... I'm up 3 pounds! I have to throw in here a question, why do total strangers (however well-meaning) feel compelled to comment on the weight of thin people? Jealousy is not a good excuse.
I brought up the various side-effects I've experienced: last week's nausea, metallic taste, acne (UGH). My options for nausea are a) wait & see if it goes away with continued use (doc has her bets on this one), b) reduced dose (doc doesn't want to do because of the severity of my disease), and c) self-shots instead of pills (EWW). The metallic taste wasn't really acknowledged, just that it goes with the nausea. Doc blames the steroid (from the infusions) for the acne. I don't buy that, I think it's the MTX, however, it has prompted me to change up my face-washing regimen and research some anti-wrinkle moisturizer (that stuff isn't cheap, but I feel the need to at least save my face since my joints are a lost cause). So, we wait it out.
I was also given an as-needed Rx for Tylenol #3 (which will have to be strictly safeguarded here at home since at least one of my kids has a known allergy to codeine like their Dad). If I don't find my missing right wrist brace soon, I fear that I will end up needing to take this. I don't like taking any more medication than I have to, so I need to find that brace!!
We discussed the deforming of my left hand quite a bit. I can be fitted by a physical therapist for finger/hand splints which won't be cheap and won't allow much use of my hands during wear. It won't "correct" the problem but may prevent further deformity. I'm going to think on that one a bit. I was urged to pay more attention to how my hands are used and to not do anything more than necessary with them. THAT'S practical advice for a busy mom of 3! I already conciously straighten my fingers and hands when "at rest" and I also take every opportunity when cleaning my hands to stretch the fingers under the warm water.
My labs were all good, so I have that to be grateful for.
I did have to sign an updated consent for the study. They added more specific information regarding infection risk. What choice did I really have? None, really. I signed it. If I could cross my fingers against infection, I would. Since I can't, I just have to keep avoiding illness.
I brought up the various side-effects I've experienced: last week's nausea, metallic taste, acne (UGH). My options for nausea are a) wait & see if it goes away with continued use (doc has her bets on this one), b) reduced dose (doc doesn't want to do because of the severity of my disease), and c) self-shots instead of pills (EWW). The metallic taste wasn't really acknowledged, just that it goes with the nausea. Doc blames the steroid (from the infusions) for the acne. I don't buy that, I think it's the MTX, however, it has prompted me to change up my face-washing regimen and research some anti-wrinkle moisturizer (that stuff isn't cheap, but I feel the need to at least save my face since my joints are a lost cause). So, we wait it out.
I was also given an as-needed Rx for Tylenol #3 (which will have to be strictly safeguarded here at home since at least one of my kids has a known allergy to codeine like their Dad). If I don't find my missing right wrist brace soon, I fear that I will end up needing to take this. I don't like taking any more medication than I have to, so I need to find that brace!!
We discussed the deforming of my left hand quite a bit. I can be fitted by a physical therapist for finger/hand splints which won't be cheap and won't allow much use of my hands during wear. It won't "correct" the problem but may prevent further deformity. I'm going to think on that one a bit. I was urged to pay more attention to how my hands are used and to not do anything more than necessary with them. THAT'S practical advice for a busy mom of 3! I already conciously straighten my fingers and hands when "at rest" and I also take every opportunity when cleaning my hands to stretch the fingers under the warm water.
My labs were all good, so I have that to be grateful for.
I did have to sign an updated consent for the study. They added more specific information regarding infection risk. What choice did I really have? None, really. I signed it. If I could cross my fingers against infection, I would. Since I can't, I just have to keep avoiding illness.
Friday, January 9, 2009
ugh
This week I took the max dose of MTX I've been prescribed, and the entire next day I was nauseous. I had a nasty metallic taste that my toothbrush and paste would not cure. I eventually started checking side effects online, yes to the nausea, yes to the damned acne, but nothing about the taste. Hmmm. Gotta be sure to ask the doc about these things.
Tuesday, January 6, 2009
To apply or not to apply
Yesterday's mail brought my annual Social Security statement. Woo hoo, it's always nice to see just how little earnings I have had in the past 10 years ... not that I'm complaining, mind you, staying at home with my kids is a privilege. This spurred a conversation and some surfing about disability. My doctor told me 4 years ago to apply for it. I looked into it then and I'm pretty certain the fear of rejection is what's kept me from applying. (Mostly. I have made all sorts of excuses.) I went ahead and got the disabled parking placard last year, so I'm past the "pride" bit. The statutes and rules for disability are vague as ever, but I think there should be no denying it. If I could just send them a pic of my decrepit hands, that should do it, right? I did notice, during the conversation last night, that my left one is angling off now like the right one ... when did that happen, exactly? Tom, the guy who does my joint count at Dr. Z's asked me about the deforming last month ... was it gradual or did I just wake up one day like that. Gradual, I guess, or maybe like the left one, it just happened. I'm rambling now ... I need to just apply and get it over with.
Sunday, December 28, 2008
Damn cold weather
The temperature and humidity here has been more up and down than normal lately and it's beginning to take a toll on my joints. That's damned frustrating. I'm certain, if I were not on the MTX, I would be much worse, but it's still frustrating. I haven't slept well the past couple of nights, and I noticed yesterday some stiffening in my left hand. I have misplaced my right wrist brace and it's pissing me off because that's the one area I have yet to feel much relief in at all.
I suppose I shouldn't blame it all on the weather because I've been silently stressing over the holidays, and I know stress irritates my body. I am torturing myself (still) over not having a beer whenever I want to. I'd decided to "be good" and save drinking (just a little) for special occasions, like New Year's Eve. After I made plans for our family for that occasion, I started stressing over it being a Wednesday, which is when I take MTX. I hate doubting myself, not knowing how things will affect me, and then it all snowballs in my head ... resulting in just being angry again that I have this stupid disease. I'm not in a good place today, and I wish I could be.
I suppose I shouldn't blame it all on the weather because I've been silently stressing over the holidays, and I know stress irritates my body. I am torturing myself (still) over not having a beer whenever I want to. I'd decided to "be good" and save drinking (just a little) for special occasions, like New Year's Eve. After I made plans for our family for that occasion, I started stressing over it being a Wednesday, which is when I take MTX. I hate doubting myself, not knowing how things will affect me, and then it all snowballs in my head ... resulting in just being angry again that I have this stupid disease. I'm not in a good place today, and I wish I could be.
Saturday, December 20, 2008
It's working!
Despite the self-inflicted emotional stress of not allowing myself to have a brewski whenever I want to, the medicine - whichever one - is working! I reported to Dr. Z yesterday that morning stiffness has not really been much of an issue for the past few weeks, and I am generally feeling good. She confirmed that my last labs were all still good, and I was relieved to know that liver enzymes are being checked with every blood draw. I was also pleased to learn that, even though my voracious appetite is a strange and uncomfortable feeling, I have gained 2 pounds - which I needed. I also ventured to the eye doctor last week and discovered my vision, thus far, seems unaffected by my health. Now if I can just get my skin under control, I'll be almost normal!
Sunday, December 7, 2008
Weeks in now
The virtually pain-free time ended about 10 days after my first infusion. I suspect it is the Prednisone (steroid) that was providing the immediate relief. In any event, I was ready for Round Two. I have now been on Methotrexate for 3.5 weeks, so I'm hoping that's going to pick up where my second steroid dose leaves off. I'm sleeping and moving really well. I'm not quite as good as I was after the first infusion, but better than a month ago for sure. It dawned on me yesterday that it has been a full month since I've even thought about taking Advil - that's a very good thing. The only side effects I have to complain about are my skin and my appetite. I don't know if either is even attributable to any of the meds, but I'm fighting pimples like a teenager and I can't seem to ever get full.
Even though my liver enzyme test indicated my liver is in good shape, I still worry about damaging it. "No drinking while on Methotrexate is the rule of thumb." I'm having a hard time with that. I've only given in one time, at a concert, since beginning treatment, and even then I only had one beer. It just sucks to hang out with friends and family in situations where I enjoy a drink or two, and now all I do is sulk because I can't do what I want to. (Now that I put that in black and white, I appear to be a whiney tit!) I'd been hoping to begin a Milk Thistle supplement to help keep my liver healthy but have since learned that it's a gut-buster, so I'm still looking.
Overall, I'm good. Much better than would have been without treatment.
Even though my liver enzyme test indicated my liver is in good shape, I still worry about damaging it. "No drinking while on Methotrexate is the rule of thumb." I'm having a hard time with that. I've only given in one time, at a concert, since beginning treatment, and even then I only had one beer. It just sucks to hang out with friends and family in situations where I enjoy a drink or two, and now all I do is sulk because I can't do what I want to. (Now that I put that in black and white, I appear to be a whiney tit!) I'd been hoping to begin a Milk Thistle supplement to help keep my liver healthy but have since learned that it's a gut-buster, so I'm still looking.
Overall, I'm good. Much better than would have been without treatment.
It's a good day!
XPost / Original November 19, 2008
I was very nervous going to the doctor's office yesterday. (Not to mention sleepy, thirsty and hungry from having to fast until the bloodwork was drawn ... ugh, no coffee!) I was given a big spiral with carbon pages and told to complete a specific section. It was a baseline survey of my mobility, pain, strength, inabilities, etc. Tom, the "joint count" guy, went through what's becoming old hat now ... applying pressure and marking on his chart my pain reaction and swelling, head to toe. I really don't like that part of the visits at all. He's nice enough, but I just don't like it. Saw my doc for a few minutes, then finally took the walk into the Infusion Room. *Dun Dun Duuuunnnnnnn* By the time I got to my appointed LazyBoy, 2/3 of the seats were taken. At the busiest, only one seat was left empty. Nobody was there for as long as I was. My left arm veins let me down, so I had to have the IV in my right arm. Dammit. Angie took what seemed like half the blood in body for her vials (she says it really isn't that much, but it sure looks like it to me). I inhaled the granola bar I'd stashed in my lunch bag like I hadn't eaten in a week. Ang got me one of those little styrofoam cups of coffee - you know the ones that aren't any bigger than a shot glass. I knocked back 2 of those before they went cold and decided I better not have more or I'd inevitably have to ask for too many potty breaks. I wasn't comfortable enough to strike up or join any of the conversations around me, so I donned my earbuds and dove into my book. Then, the Benadryl (taken to prevent allergic reaction) started to affect me. I fought it for a while, using my arsenal of sweet snacks, taking a potty break, eating some lunch before I was really hungry for it, but I just couldn't keep my eyes open after lunch. I had a 30 minute break from the 15-minute vitals-checks and I dozed. No bad reactions, no apparent allergies. My blood pressure, pulse and temperature stayed normal. But, man, was I sleepy!
This morning, the moment I woke up, I smiled because my shoulders weren't hurting. I quickly realized the only time I'd woken up last night was when my big girls woke me because Bug had a tummy ache. Not once because I was uncomfortable or in pain. My feet and knees feel good, I can raise my arms over my head, and I generally feel fine today. I know it's either the Benadryl or the steroid, but DAY-AM! Today I begin my regimine of Folic Acid and Methotrexate. The FA is daily, no big deal. The Metho is taken once weekly; I start with 3 today, 4 next week, and work up to 8 by January. At least they're tiny pills. My doctor is hopeful that I will be feeling better (due to the Metho) within a couple of months; she warns not to expect anything from the Okra (that's what Ang calls the infusion drug - Ocrelizumab) for 6 months. I have another Okra infusion in 2 weeks, then not again until April. In the meantime, I'm planning to push my daughter in the backyard swing this afternoon BECAUSE I CAN.
I was very nervous going to the doctor's office yesterday. (Not to mention sleepy, thirsty and hungry from having to fast until the bloodwork was drawn ... ugh, no coffee!) I was given a big spiral with carbon pages and told to complete a specific section. It was a baseline survey of my mobility, pain, strength, inabilities, etc. Tom, the "joint count" guy, went through what's becoming old hat now ... applying pressure and marking on his chart my pain reaction and swelling, head to toe. I really don't like that part of the visits at all. He's nice enough, but I just don't like it. Saw my doc for a few minutes, then finally took the walk into the Infusion Room. *Dun Dun Duuuunnnnnnn* By the time I got to my appointed LazyBoy, 2/3 of the seats were taken. At the busiest, only one seat was left empty. Nobody was there for as long as I was. My left arm veins let me down, so I had to have the IV in my right arm. Dammit. Angie took what seemed like half the blood in body for her vials (she says it really isn't that much, but it sure looks like it to me). I inhaled the granola bar I'd stashed in my lunch bag like I hadn't eaten in a week. Ang got me one of those little styrofoam cups of coffee - you know the ones that aren't any bigger than a shot glass. I knocked back 2 of those before they went cold and decided I better not have more or I'd inevitably have to ask for too many potty breaks. I wasn't comfortable enough to strike up or join any of the conversations around me, so I donned my earbuds and dove into my book. Then, the Benadryl (taken to prevent allergic reaction) started to affect me. I fought it for a while, using my arsenal of sweet snacks, taking a potty break, eating some lunch before I was really hungry for it, but I just couldn't keep my eyes open after lunch. I had a 30 minute break from the 15-minute vitals-checks and I dozed. No bad reactions, no apparent allergies. My blood pressure, pulse and temperature stayed normal. But, man, was I sleepy!
This morning, the moment I woke up, I smiled because my shoulders weren't hurting. I quickly realized the only time I'd woken up last night was when my big girls woke me because Bug had a tummy ache. Not once because I was uncomfortable or in pain. My feet and knees feel good, I can raise my arms over my head, and I generally feel fine today. I know it's either the Benadryl or the steroid, but DAY-AM! Today I begin my regimine of Folic Acid and Methotrexate. The FA is daily, no big deal. The Metho is taken once weekly; I start with 3 today, 4 next week, and work up to 8 by January. At least they're tiny pills. My doctor is hopeful that I will be feeling better (due to the Metho) within a couple of months; she warns not to expect anything from the Okra (that's what Ang calls the infusion drug - Ocrelizumab) for 6 months. I have another Okra infusion in 2 weeks, then not again until April. In the meantime, I'm planning to push my daughter in the backyard swing this afternoon BECAUSE I CAN.
I'm IN!
XPost / Original November 4, 2008
I had one more shot at the RA drug study. The re-screening was scheduled for November 6. My plan of attack was to go off my anti-inflammatory for a week, and throw my sensitivity diet out the window. When they called last Monday and said the company was suddenly closing enrollment as of Halloween, I nearly panicked. I immediately put my plan into play. I hobbled around all last week and went in Friday for the labwork. This morning, the research coordinator called me with the results ... CRP was 1.29 (and everything else was good, too)! I go in this Thursday morning to finish up the paperwork and get a calendar of appointments for the next year. I anticipate beginning new medication before Thanksgiving.
Now, if the election results go my way today, we'll have even more reason to party tonight!
I had one more shot at the RA drug study. The re-screening was scheduled for November 6. My plan of attack was to go off my anti-inflammatory for a week, and throw my sensitivity diet out the window. When they called last Monday and said the company was suddenly closing enrollment as of Halloween, I nearly panicked. I immediately put my plan into play. I hobbled around all last week and went in Friday for the labwork. This morning, the research coordinator called me with the results ... CRP was 1.29 (and everything else was good, too)! I go in this Thursday morning to finish up the paperwork and get a calendar of appointments for the next year. I anticipate beginning new medication before Thanksgiving.
Now, if the election results go my way today, we'll have even more reason to party tonight!
Do-Overs
XPost / Original October 2, 2008
So, I took the CRP test again. I had not taken my medicine the night before and was absolutely miserable the entire day. The idea was, the more miserable I felt, the higher the test result would be. Of course, it can't be that simple, right? Seriously, this is MY life. Not only was it still not high enough, but it was actually LOWER than the first test. WTF, right? Exactly. It's extremely defeating to me .. it's like this test is mocking me, like my blood is arguing with the rest of my body. So, now what?
My doctor really wants me to be a part of this study. I think her reasons are two-fold: one, I am (from what I've seen) one of the youngest people she's seeing, and two, she knows the cost of treatment would be a ginormous burden on my family. So, we begin again. There is a 30-day window between the date of screening (baseline) and the first infusion. (Because the latest date of my initial window is when I'm booked to Seattle - YAY! - it just isn't going to work this time around.) If I am not deemed eligible in that time frame, I cannot participate. So, my next screening is scheduled for November 6. Between now and then, I need to induce a flare that will satisfy all of the tests. Because I absolutely cannot function for an entire month without my medicine, my plan is to be as active as I possibly can be in the next month, bring on the booze and milk and sugar, and stop taking my medicine a few days before the screening. If it doesn't work, then I just am not supposed to be part of this study for whatever reason.
I never imagined getting treatment would be so frustrating. It's taken me so long to just go in the first place, and now I'm just tired of the stiffness, the immobility, the pain, and every annoying aspect of this, I desperately want it to just go away. Dammit.
So, I took the CRP test again. I had not taken my medicine the night before and was absolutely miserable the entire day. The idea was, the more miserable I felt, the higher the test result would be. Of course, it can't be that simple, right? Seriously, this is MY life. Not only was it still not high enough, but it was actually LOWER than the first test. WTF, right? Exactly. It's extremely defeating to me .. it's like this test is mocking me, like my blood is arguing with the rest of my body. So, now what?
My doctor really wants me to be a part of this study. I think her reasons are two-fold: one, I am (from what I've seen) one of the youngest people she's seeing, and two, she knows the cost of treatment would be a ginormous burden on my family. So, we begin again. There is a 30-day window between the date of screening (baseline) and the first infusion. (Because the latest date of my initial window is when I'm booked to Seattle - YAY! - it just isn't going to work this time around.) If I am not deemed eligible in that time frame, I cannot participate. So, my next screening is scheduled for November 6. Between now and then, I need to induce a flare that will satisfy all of the tests. Because I absolutely cannot function for an entire month without my medicine, my plan is to be as active as I possibly can be in the next month, bring on the booze and milk and sugar, and stop taking my medicine a few days before the screening. If it doesn't work, then I just am not supposed to be part of this study for whatever reason.
I never imagined getting treatment would be so frustrating. It's taken me so long to just go in the first place, and now I'm just tired of the stiffness, the immobility, the pain, and every annoying aspect of this, I desperately want it to just go away. Dammit.
Good Morning, you're not quite sick enough
XPost / Original September 25, 2008
My telephone rang bright and early this morning. The research coordinator at my rheumatologist's office (who is a very perky person) was calling about one of the blood tests they did last week. Specifically the CRP Test. My understanding (from her and my own quick googling), it is a test to determine the level of C-reactive protein (produced by the liver) in the blood. The result is an indicator of inflammation, appropriately designed to determine a person's risk for heart problems. The lower the number in the result, the healthier the blood. For RA, it is used to assess the effectiveness of RA medication. This result can fluctuate just like the physical symptoms of the disease - with medication, humidity, barometric pressure, etc. Optimal result is less than 2 (mg/L). In order to qualify for this study, patients have to have a number greater than 1. The morning I went in, I was actually feeling pretty good .. and I scored a .8 (yes, POINT EIGHT, eight-tenths, whatever). Fabulous, now I get to retest, and if I don't get that number up, I'm not in the study group. So, I'm skipping my med the night before, crossing my fingers that it will rain, and waiting until the "bad part" of my day to have blood redrawn next week. This is just ridiculous.
My telephone rang bright and early this morning. The research coordinator at my rheumatologist's office (who is a very perky person) was calling about one of the blood tests they did last week. Specifically the CRP Test. My understanding (from her and my own quick googling), it is a test to determine the level of C-reactive protein (produced by the liver) in the blood. The result is an indicator of inflammation, appropriately designed to determine a person's risk for heart problems. The lower the number in the result, the healthier the blood. For RA, it is used to assess the effectiveness of RA medication. This result can fluctuate just like the physical symptoms of the disease - with medication, humidity, barometric pressure, etc. Optimal result is less than 2 (mg/L). In order to qualify for this study, patients have to have a number greater than 1. The morning I went in, I was actually feeling pretty good .. and I scored a .8 (yes, POINT EIGHT, eight-tenths, whatever). Fabulous, now I get to retest, and if I don't get that number up, I'm not in the study group. So, I'm skipping my med the night before, crossing my fingers that it will rain, and waiting until the "bad part" of my day to have blood redrawn next week. This is just ridiculous.
Screening
XPost / Original September 19, 2008
I completed the screening process for the RA-drug study yesterday. It wasn't as bad as I expected. The worst part was spending so much time in a doctor's office .. in all the four years I've been dealing with RA, I never have felt like a "sick (ill) person," but doing the joint count (and realizing how many of my joints are affected), seeing other patients wander through with their IV poles getting infusions .. Treatment is an ugly word. I have a calendar full of appointments now, ranging from two to eight hours each. A bit of a blow to the ego, I guess.
I completed the screening process for the RA-drug study yesterday. It wasn't as bad as I expected. The worst part was spending so much time in a doctor's office .. in all the four years I've been dealing with RA, I never have felt like a "sick (ill) person," but doing the joint count (and realizing how many of my joints are affected), seeing other patients wander through with their IV poles getting infusions .. Treatment is an ugly word. I have a calendar full of appointments now, ranging from two to eight hours each. A bit of a blow to the ego, I guess.
Dear God, I have a bone to pick
XPost / Original August 29, 2008
I don't go out of my way to offend anyone. Sometimes it happens though, when I speak what's really on my mind. I need to do that now, offensive or not.
I've been pondering my disbelief. In heaven, hell, god, all that stuff. Second-guessing myself, maybe. In the end, though, it comes back to what's held me firm ... it's that "merciful God" part. I'm trying to figure out how to deal with, how to accept how unfair life is, how to cope with the hand I've been dealt. I look at my kids and my husband, and I know I HAVE to do that, but it's the strength and direction I'm struggling with. Every time I talk to my beloved Granny about my disease, she brings The Lord into it. This week, in the midst of my pity-party, as expected, she prompted me to second-guess my lack of faith. Many survivors (for lack of a better word) turn to religion for strength, right? I just can't wrap my head around that.
If a god was actually responsible for everything Earthly, I have a laundry list of bullshit to ask him/her about because I cannot fathom "merciful" and "willful" coming together reasonably. How does someone have faith in, and get strength from a spiritual being that allows, dare I say "causes" such horrific things? Little kids being molested. Cancer. Divorce. "Accidents." Suicide. RA. Mosquitoes. Seriously.
I understand, and have even offered it to others in down times, the logic that we have to have downs in life in order to appreciate the ups. I get that. It doesn't piss me off any less, though, especially when I'm way down in the mud of life.
What I am struggling with is that unanswerable Why Me. (I warned you, I'm having a pity party.) I am a 34 year old, married mother of three daughters whom I educate at home. I pay my taxes. I vote. I survived a nightmarish childhood. I love my family. I am open-minded and respectful. I recycle. So, why did I get the chronic "invisible" disease nobody understands? Why do I have to take supplements and experimental medicines just so that I can have a chance at functioning "normally" and continuing to live? I don't have a choice, not really. This will kill me if I don't try to treat it. I can't very well just ignore that, now can I? I could, but that would be against every bit of who I am - a mother, a wife, the friend who wants to be there for everybody. So, not having a choice hacks me off.
I'm not seeking sympathy. I'm actually needing some fuel, some direction, some help putting on the big girl panties. I saw the x-rays of my hands and feet this week. There are HOLES in my bones, lots of them. There is no synovial tissue nor cartilage left between most of the joints in my hands. I was diagnosed with this less than four years ago. It's officially "very severe" and "very active". It's time for me to shit or get off the pot. When you don't have the strength to even stand up at the end of the day ... well, you get it.
My mind keeps wandering back to the days when people finally actually believed the truth of my childhood nightmare. Offering support, everyone would say, "God doesn't give anyone more than she can handle." Well, BULLSHIT. This isn't fair. Not to me, not to my husband, not to my kids. I'm not afraid to die but I love being alive. I can't sit in the floor with my 3 year old. I can't jump on the trampoline with my 10 year old. I can't play Guitar Hero with my teenager. I have to ask my husband to brush my hair and help me dress sometimes. THAT is too much to handle, THAT pisses me off! Why in the world would I even try to find strength in a God who has done this to me?
So, that's where I am, for those of you who care. And, I really do appreciate those of you. You know I don't mean to offend. This is just me, trying to get through the shitty hand I've been dealt. Trying to claw myself out of the mud. If you didn't understand my disbelief before, maybe you do now. I'm not trying to change anyone else's beliefs - I respect that everybody is different and draws strength from their own experiences. I have to find it in myself, but at this moment, I am swimming in anger and pain and this is how I scream.
I don't go out of my way to offend anyone. Sometimes it happens though, when I speak what's really on my mind. I need to do that now, offensive or not.
I've been pondering my disbelief. In heaven, hell, god, all that stuff. Second-guessing myself, maybe. In the end, though, it comes back to what's held me firm ... it's that "merciful God" part. I'm trying to figure out how to deal with, how to accept how unfair life is, how to cope with the hand I've been dealt. I look at my kids and my husband, and I know I HAVE to do that, but it's the strength and direction I'm struggling with. Every time I talk to my beloved Granny about my disease, she brings The Lord into it. This week, in the midst of my pity-party, as expected, she prompted me to second-guess my lack of faith. Many survivors (for lack of a better word) turn to religion for strength, right? I just can't wrap my head around that.
If a god was actually responsible for everything Earthly, I have a laundry list of bullshit to ask him/her about because I cannot fathom "merciful" and "willful" coming together reasonably. How does someone have faith in, and get strength from a spiritual being that allows, dare I say "causes" such horrific things? Little kids being molested. Cancer. Divorce. "Accidents." Suicide. RA. Mosquitoes. Seriously.
I understand, and have even offered it to others in down times, the logic that we have to have downs in life in order to appreciate the ups. I get that. It doesn't piss me off any less, though, especially when I'm way down in the mud of life.
What I am struggling with is that unanswerable Why Me. (I warned you, I'm having a pity party.) I am a 34 year old, married mother of three daughters whom I educate at home. I pay my taxes. I vote. I survived a nightmarish childhood. I love my family. I am open-minded and respectful. I recycle. So, why did I get the chronic "invisible" disease nobody understands? Why do I have to take supplements and experimental medicines just so that I can have a chance at functioning "normally" and continuing to live? I don't have a choice, not really. This will kill me if I don't try to treat it. I can't very well just ignore that, now can I? I could, but that would be against every bit of who I am - a mother, a wife, the friend who wants to be there for everybody. So, not having a choice hacks me off.
I'm not seeking sympathy. I'm actually needing some fuel, some direction, some help putting on the big girl panties. I saw the x-rays of my hands and feet this week. There are HOLES in my bones, lots of them. There is no synovial tissue nor cartilage left between most of the joints in my hands. I was diagnosed with this less than four years ago. It's officially "very severe" and "very active". It's time for me to shit or get off the pot. When you don't have the strength to even stand up at the end of the day ... well, you get it.
My mind keeps wandering back to the days when people finally actually believed the truth of my childhood nightmare. Offering support, everyone would say, "God doesn't give anyone more than she can handle." Well, BULLSHIT. This isn't fair. Not to me, not to my husband, not to my kids. I'm not afraid to die but I love being alive. I can't sit in the floor with my 3 year old. I can't jump on the trampoline with my 10 year old. I can't play Guitar Hero with my teenager. I have to ask my husband to brush my hair and help me dress sometimes. THAT is too much to handle, THAT pisses me off! Why in the world would I even try to find strength in a God who has done this to me?
So, that's where I am, for those of you who care. And, I really do appreciate those of you. You know I don't mean to offend. This is just me, trying to get through the shitty hand I've been dealt. Trying to claw myself out of the mud. If you didn't understand my disbelief before, maybe you do now. I'm not trying to change anyone else's beliefs - I respect that everybody is different and draws strength from their own experiences. I have to find it in myself, but at this moment, I am swimming in anger and pain and this is how I scream.
Gotta keep movin'
XPost / Original September 12, 2008
Thank you, my friends, for all the words, direction, insight, and fuel for the fire since my last blog. I haven't found all of the answers yet, but I'm feeling some better. If anybody knows of a sale on big girl panties, I am in the market for some. Actively shopping now, instead of just pouting. I love you all!!
Next week I begin the screening process for the RA study, and I also should be starting Methotrexate (weekly med, I assume oral rather than injected). The first screening appointment is a long one, 4+ hours of various x-rays, EKG, labs, ridiculously extensive medical history. I'll know more of what's to come after that appointment. Assuming I am approved to take part in the study, infusions will be scheduled for the next year. If I'm not approved, we'll change the course toward an available injectable med to go with the Methotrexate (because it is more effective in combination with something like Enbrel/Remicade/Humira).
In the meantime, I am thankful for a full calendar to keep me moving ... my youngest sister is getting hitched next week, MyLove and I are off to Seattle (him for training, me to visit a childhood friend), I have plans to attend a variety of theater events, all in addition to my busy-ness of raising and homeschooling my girls.
If you haven't already, check out my new default song (thanks to Nat for introducing me to the talented Mr. Fullbright's music!). It's my new theme ... "in the end you gotta grit your teeth and keep movin'."
Thank you, my friends, for all the words, direction, insight, and fuel for the fire since my last blog. I haven't found all of the answers yet, but I'm feeling some better. If anybody knows of a sale on big girl panties, I am in the market for some. Actively shopping now, instead of just pouting. I love you all!!
Next week I begin the screening process for the RA study, and I also should be starting Methotrexate (weekly med, I assume oral rather than injected). The first screening appointment is a long one, 4+ hours of various x-rays, EKG, labs, ridiculously extensive medical history. I'll know more of what's to come after that appointment. Assuming I am approved to take part in the study, infusions will be scheduled for the next year. If I'm not approved, we'll change the course toward an available injectable med to go with the Methotrexate (because it is more effective in combination with something like Enbrel/Remicade/Humira).
In the meantime, I am thankful for a full calendar to keep me moving ... my youngest sister is getting hitched next week, MyLove and I are off to Seattle (him for training, me to visit a childhood friend), I have plans to attend a variety of theater events, all in addition to my busy-ness of raising and homeschooling my girls.
If you haven't already, check out my new default song (thanks to Nat for introducing me to the talented Mr. Fullbright's music!). It's my new theme ... "in the end you gotta grit your teeth and keep movin'."
As ready as I'm going to be
XPost / Original July 16, 2008
Whew. I finally finished up the stack of reading given to me by the rheumatologist. I began with the 40-page booklet entitled "Rheumatoid Arthritis" put out by the US DHHS, the 4 pages about Methotrexate (a commonly prescribed arthritis drug), and the 17 page Information and Consent form regarding the double-blind clinical trial of the drug ocrelizumab (which, as I understand, is kinda like Remicade but not exactly .. it's at least the second variation of that).
I liken the government-issued booklet to the "What to Expect" series of books (my brief review of the pregnancy one is here). It's one of those little pamphlets that is stapled in the middle, and it falls open to those staples which is where the 10 pages of medication charts begin. Not a good first impression, but I read it anyway. It's divided into sections that discuss what little is known about the disease, its development and progression, and some treatments. Perhaps I have some sort of hang-up on needing to know the Why, but I just can't shake it. In the bit about "Searching for the Causes," it actually says, "Scientists have discovered that certain genes known to play a role in the immune system are associated with a tendency to develop (RA). Some people with (RA) do not have these particular genes; still others have these genes but never develop the disease. These somewhat contradictory data suggest that a person's genetic makeup plays an important role in determining if he or she will develop (RA)." Um, what? Turns out, the most helpful part of it is about the meds ... because that's all they know to do with RA sufferers, throw meds at them and study them. The treatments are for the symptoms (although the newer cell-destroying ones somehow actually slow the degeneration, at the expense of your immune system, of course). Methotrexate is the most commonly prescribed Disease-Modifying Anti-Rheumatic Drug (DMARD) which the government clearly states here, "Exactly how they work is still unknown." Reassuring, huh?
Being given the brochure on Methotrexate (MTX) means that is what my doctor is planning to begin with, which is very common. What I didn't know is that you have to take a folic acid supplement with it. MTX is most effective when used in combination with Biologic Response Modifiers, or what I call "cell-killers". These include all of those drugs you see annoyingly advertised on TV ... Enbrel, Remicade, etc. There are two main types of those, and I suppose the deciding factor in which one you're prescribed depends on which research your doctor favors ... either TNF or Interleukin1 cells are what needs to be targeted. The biggest concern I have with taking MTX (alone or in combination with something else) is the risk of liver disease/damage. I've outlived my dad by over a year now, and I have a hard time believing his liver wasn't weak to begin with. I know he was an alcoholic, and alcoholism is the main cause of cirrhosis which is what killed him at age 33. But, seriously, he spent a couple of years in prison near the end of his life ... he wasn't drinking then. To die that young, he HAD to have some predisposition to liver disease. So, I need to know what shape mine's in before I can feel okay about taking something that is known to bang it up.
Lastly, I got through the study information. It was written very straight-forward and was careful not to sway the reader to or from doing the study. Despite the gloom and doom throughout describing the awful side effects and potential for death, I actually began a list of questions to ask about the study as I read through it. Then I got to the bottom of page 12 (of 17). In a section called "Compensation for Research-Related Injury," it says, "In the event that your participation in this study results in a medical problem, report the problem immediately to your study doctor. Your doctor will explain the treatment options available and where information and such treatment can be obtained. The costs of any such treatment will not be reimbursed, nor will any other financial compensation be provided." (emphasis added by me). I'm pretty certain that I understand that loud and clear: if the experimental meds we give you mess you up, you're on your own. That bit made me feel so much better about how uneasy the whole thing made me. I'm not going to be a guinea pig for this study. Sure, they might pay for some of the labs and x-rays I'm going to need anyway, but the unknown expense to me is just not worth it.
All things considered, I need some treatment - that's why I went in the first place. Today, though, I feel more confident about being an active part of my treatment plan. I'm going to focus on resuming Tai Chi Chih regularly again, and I plan to have a real heart-to-heart with my doctor until I'm comfortable with what we decide is safe enough for me to try, including alternative therapies. Not having all of the labs done yet (having my TB test read today), I'm still a little concerned about the aggression of the disease - the visible damage does seem to have developed pretty rapidly. I'll just have to take it one careful step at a time and hope for the best. Who knows ... maybe the Arthritis Foundation will get its head out of the ass of the drug manufacturers and focus on actually getting unbiased scientists to figure out what actually causes RA so they can find a CURE instead of a bandaid. Having RA still sucks as much today as it did last week, but I have to deal with it because it was another card in the hand I've been dealt.
Whew. I finally finished up the stack of reading given to me by the rheumatologist. I began with the 40-page booklet entitled "Rheumatoid Arthritis" put out by the US DHHS, the 4 pages about Methotrexate (a commonly prescribed arthritis drug), and the 17 page Information and Consent form regarding the double-blind clinical trial of the drug ocrelizumab (which, as I understand, is kinda like Remicade but not exactly .. it's at least the second variation of that).
I liken the government-issued booklet to the "What to Expect" series of books (my brief review of the pregnancy one is here). It's one of those little pamphlets that is stapled in the middle, and it falls open to those staples which is where the 10 pages of medication charts begin. Not a good first impression, but I read it anyway. It's divided into sections that discuss what little is known about the disease, its development and progression, and some treatments. Perhaps I have some sort of hang-up on needing to know the Why, but I just can't shake it. In the bit about "Searching for the Causes," it actually says, "Scientists have discovered that certain genes known to play a role in the immune system are associated with a tendency to develop (RA). Some people with (RA) do not have these particular genes; still others have these genes but never develop the disease. These somewhat contradictory data suggest that a person's genetic makeup plays an important role in determining if he or she will develop (RA)." Um, what? Turns out, the most helpful part of it is about the meds ... because that's all they know to do with RA sufferers, throw meds at them and study them. The treatments are for the symptoms (although the newer cell-destroying ones somehow actually slow the degeneration, at the expense of your immune system, of course). Methotrexate is the most commonly prescribed Disease-Modifying Anti-Rheumatic Drug (DMARD) which the government clearly states here, "Exactly how they work is still unknown." Reassuring, huh?
Being given the brochure on Methotrexate (MTX) means that is what my doctor is planning to begin with, which is very common. What I didn't know is that you have to take a folic acid supplement with it. MTX is most effective when used in combination with Biologic Response Modifiers, or what I call "cell-killers". These include all of those drugs you see annoyingly advertised on TV ... Enbrel, Remicade, etc. There are two main types of those, and I suppose the deciding factor in which one you're prescribed depends on which research your doctor favors ... either TNF or Interleukin1 cells are what needs to be targeted. The biggest concern I have with taking MTX (alone or in combination with something else) is the risk of liver disease/damage. I've outlived my dad by over a year now, and I have a hard time believing his liver wasn't weak to begin with. I know he was an alcoholic, and alcoholism is the main cause of cirrhosis which is what killed him at age 33. But, seriously, he spent a couple of years in prison near the end of his life ... he wasn't drinking then. To die that young, he HAD to have some predisposition to liver disease. So, I need to know what shape mine's in before I can feel okay about taking something that is known to bang it up.
Lastly, I got through the study information. It was written very straight-forward and was careful not to sway the reader to or from doing the study. Despite the gloom and doom throughout describing the awful side effects and potential for death, I actually began a list of questions to ask about the study as I read through it. Then I got to the bottom of page 12 (of 17). In a section called "Compensation for Research-Related Injury," it says, "In the event that your participation in this study results in a medical problem, report the problem immediately to your study doctor. Your doctor will explain the treatment options available and where information and such treatment can be obtained. The costs of any such treatment will not be reimbursed, nor will any other financial compensation be provided." (emphasis added by me). I'm pretty certain that I understand that loud and clear: if the experimental meds we give you mess you up, you're on your own. That bit made me feel so much better about how uneasy the whole thing made me. I'm not going to be a guinea pig for this study. Sure, they might pay for some of the labs and x-rays I'm going to need anyway, but the unknown expense to me is just not worth it.
All things considered, I need some treatment - that's why I went in the first place. Today, though, I feel more confident about being an active part of my treatment plan. I'm going to focus on resuming Tai Chi Chih regularly again, and I plan to have a real heart-to-heart with my doctor until I'm comfortable with what we decide is safe enough for me to try, including alternative therapies. Not having all of the labs done yet (having my TB test read today), I'm still a little concerned about the aggression of the disease - the visible damage does seem to have developed pretty rapidly. I'll just have to take it one careful step at a time and hope for the best. Who knows ... maybe the Arthritis Foundation will get its head out of the ass of the drug manufacturers and focus on actually getting unbiased scientists to figure out what actually causes RA so they can find a CURE instead of a bandaid. Having RA still sucks as much today as it did last week, but I have to deal with it because it was another card in the hand I've been dealt.
Baby Steps
XPost / Original July 15, 2008
The doc I saw yesterday was nice enough; a little Greek (I think) lady. I don't have anything really definitive to share about yesterday's rheumatology appointment except that I appear to be shrinking. I have yet to have various lab tests done before she can really give me a specific treatment. This wasn't done yesterday because I am eligible for a clinical trial she's doing, and if I decide to do that, I should enroll in it before spending my own money on treatment. Essentially, the treatment she anticipates using is almost the same as the one being studied in the trial - just an improvement on a drug already FDA-approved. The immediate problem I see is that I have a one out of 3 chance of not even getting the med as part of the study. That's just PART of the treatment, though. It's all very complicated and I haven't had enough energy or focus to digest all the reading just yet, so I have more questions than answers at the moment.
I'm still trying to wrap my head around the chronic and unyielding nature of my illness; let alone the various treatments available. I have such a difficult time comprehending how treatment is even begun on a completely alien disease process. If you don't know the cause, how do you possibly hope to cure it? I don't trust "modern" medicine. The risks of side effects of treatment are supposedly less harmful than the disease itself. That's what I keep seeing and hearing. I got a pretty big dose of "you waited a crazy long time" to seek treatment yesterday. Between beating myself up over stubbornly procrastinating, being overwhelmed with reading material, struggling with the decision between guaranteed treatment that's going to cost a fortune (and may or may not work) versus a potential treatment that won't cost a thing (and may or may not work), worrying over the thyroid lab test and the hand & foot x-rays, having to get a TB test which I dread because the last one flared my whole arm, and feeling like I look much worse than I thought I did (grossly freakish, actually), acting like I'm just fine in front of my kids is tough. I just want to sit in my bed and cry. Sleep would be nice, too. I can't do that, though.
Anyway, I really, truly appreciate everybody's thoughts and prayers and vibes. It's hard to talk about right now without crumbling, so when I've had a chance to deal with it and have some better answers, I'll update here. In the meantime, I have too much to do with my kids to stop and have a pity-party on the phone. I have such wonderful friends, I know you understand.
The doc I saw yesterday was nice enough; a little Greek (I think) lady. I don't have anything really definitive to share about yesterday's rheumatology appointment except that I appear to be shrinking. I have yet to have various lab tests done before she can really give me a specific treatment. This wasn't done yesterday because I am eligible for a clinical trial she's doing, and if I decide to do that, I should enroll in it before spending my own money on treatment. Essentially, the treatment she anticipates using is almost the same as the one being studied in the trial - just an improvement on a drug already FDA-approved. The immediate problem I see is that I have a one out of 3 chance of not even getting the med as part of the study. That's just PART of the treatment, though. It's all very complicated and I haven't had enough energy or focus to digest all the reading just yet, so I have more questions than answers at the moment.
I'm still trying to wrap my head around the chronic and unyielding nature of my illness; let alone the various treatments available. I have such a difficult time comprehending how treatment is even begun on a completely alien disease process. If you don't know the cause, how do you possibly hope to cure it? I don't trust "modern" medicine. The risks of side effects of treatment are supposedly less harmful than the disease itself. That's what I keep seeing and hearing. I got a pretty big dose of "you waited a crazy long time" to seek treatment yesterday. Between beating myself up over stubbornly procrastinating, being overwhelmed with reading material, struggling with the decision between guaranteed treatment that's going to cost a fortune (and may or may not work) versus a potential treatment that won't cost a thing (and may or may not work), worrying over the thyroid lab test and the hand & foot x-rays, having to get a TB test which I dread because the last one flared my whole arm, and feeling like I look much worse than I thought I did (grossly freakish, actually), acting like I'm just fine in front of my kids is tough. I just want to sit in my bed and cry. Sleep would be nice, too. I can't do that, though.
Anyway, I really, truly appreciate everybody's thoughts and prayers and vibes. It's hard to talk about right now without crumbling, so when I've had a chance to deal with it and have some better answers, I'll update here. In the meantime, I have too much to do with my kids to stop and have a pity-party on the phone. I have such wonderful friends, I know you understand.
Scared
XPost / Original July 7, 2008
My family doc cut me off the ketoprofen she's prescribed me for the past 3 years; she knew that was the only way to get me to see a rheumatologist. Down to less than 3 weeks worth of meds that enable me to get out of bed in the mornings, I figured I better get to it since I keep reading and hearing that it can take months just to get in to see somebody. There are less than a dozen rheumatology specialists in my area, several officing in the same clinics, of course. I checked patient reviews and narrowed it down to two places to start with. Having timed my call right after a cancellation, I lucked (?) into an appointment next Monday afternoon. The receptionist was friendly and sympathetic to my self-pay status and anxiety over even making the appointment. So, it's done. I'm going. I'm scared out of my mind.
My family doc cut me off the ketoprofen she's prescribed me for the past 3 years; she knew that was the only way to get me to see a rheumatologist. Down to less than 3 weeks worth of meds that enable me to get out of bed in the mornings, I figured I better get to it since I keep reading and hearing that it can take months just to get in to see somebody. There are less than a dozen rheumatology specialists in my area, several officing in the same clinics, of course. I checked patient reviews and narrowed it down to two places to start with. Having timed my call right after a cancellation, I lucked (?) into an appointment next Monday afternoon. The receptionist was friendly and sympathetic to my self-pay status and anxiety over even making the appointment. So, it's done. I'm going. I'm scared out of my mind.
Subscribe to:
Posts (Atom)