lying "flat"
at rest
grasping/fist
Wednesday, February 3, 2010
SS/Disability Progress Update
Thought I'd share a quick update on the SS/disability progress. Pretty slow going, but STILL GOING and that's what's important. My dear Dr. Z had very little in the way of records to share since most of my treatment has been at the whim of a foreign drug research firm. This presented the SS office with difficulty in making a determination, so they set up an appointment for me to see a doctor at their expense. I wouldn't have a problem with this except for three little things - 1) it's over an hour's drive away, 2) I have a Type 1 diabetic child who would not be allowed to accompany me, and 3) they couldn't see me until the end of February. The social worker assigned to my case seems sympathetic to my issues but her hands are tied by a fair amount of red tape. However, she mailed me a couple of "Third Party Function Reports" which I had my husband and sister complete, and she also requested photos of my hands. It took me some time to get all that completed and together, and she should have that stuff back by the end of this week. She has also sent more specific questionnaires to Dr. Z, which have been completed and returned. I do believe she's trying to have a determination made before the scheduled appointment. It was interesting to read the answers of my loved ones, and my husband's brutally honest answers made me aware that perhaps I've been a bit modest about my disabilities. Here are the photos my daughter took of my hands - these are a couple of the ones I'm sending in.
Wednesday, October 21, 2009
Apple Pie
That number is 202-224-3121. Senators Inhofe and (especially) Coburn know who I am. I email them a lot. They never listen, but that doesn't stop me. I called after seeing this video. I emailed them, too. Then, I emailed President Obama begging him not to sign any healthcare reform that does not include a public option. I *need* a public option. The United States needs universal healthcare, and the public option is the right step toward that.
Monday, October 19, 2009
It's a Pig's Life
I've been looking forward to my next infusion because my pain and swelling have been increasing lately. (I'm finger-pecking here, so this may be brief.) I ran into my nurse at Wally World a few weeks ago, and even told her as much. She called me today "with bad news". The Powers That Be have pulled the plug on my clinical trial. No infusion in 3 weeks for me. No explanation, no info yet on how much, if any, Okra I've been getting. My consolation prize is 12 months of 12-week interval labs and office visits (and probably some paperwork for my crippled hands to complete each time). If they get (or have secured) FDA approval, infusions can resume at no charge until Okra's on the market. As of right now, though, for all we know, they won't pursue approval based on the data they've collected. Thanks, Guinea Pig, we appreciate your blind desperation and cooperation ... we'll call ya.
Lit a fire under me. I submitted my disability application and will mail in the rest of it tomorrow. Need to get the TB test done, too - I can at least keep paying for the MTX, and shouldn't incur any other office visits outside of what The Powers will pay for. Hopefully I'll have a favorable decision before the 12 months is up. The one thing this study has taught me is that I cannot function without treatment. I fear going there again, even as my hand cramps now.
Universal Healthcare Now!!!
Lit a fire under me. I submitted my disability application and will mail in the rest of it tomorrow. Need to get the TB test done, too - I can at least keep paying for the MTX, and shouldn't incur any other office visits outside of what The Powers will pay for. Hopefully I'll have a favorable decision before the 12 months is up. The one thing this study has taught me is that I cannot function without treatment. I fear going there again, even as my hand cramps now.
Universal Healthcare Now!!!
Tuesday, October 6, 2009
Folic Acid warning
I don't have a prostate, but I do know more than one male with RA taking MTX - protocol for MTX is 1 mg/day folic acid supplement. This post is for them.
Excess Folic Acid May Raise Cancer Risk
Where a little may be good, a lot may be hazardous... such may be the case with folate, and its synthetic form folic acid, the B vitamin that helps protect the nervous system and prevent anemia. For years now, the US government (along with Canada and Chile) has required that most breads, flours, cornmeal, rice and some other grains be fortified with folic acid as a way to reduce birth defects known to be caused by folate deficiency.
It's working -- incidence of neural tube birth defects has been reduced by as much as 50% in these countries, but at the same time, there has been another, totally unexpected development. All three countries have also seen rates of colorectal cancer rise, an abrupt reversal after years of decline -- with the increase estimated at an additional four to six cases of colorectal cancer per 100,000 people. Adding to that concern were the results of a large clinical trial published in the Journal of the American Medical Association in 2007 concerning folic acid supplementation and colon cancer. The participants, all of whom had previously had colon polyps, were divided into two groups -- one group took 1,000 mcg daily (this is considered the
uppermost safe limit and exceeds the daily recommended intake, which is 400 mcg) of folic acid and the other a placebo. After seven years, the study found that those taking supplemental folic acid were more likely to have multiple polyps, and at higher risk, than those who didn't take it. Even more troubling: A follow-up study of this same group found that after 10 or 11 years, those supplementing with folic acid had a three-fold increase in prostate cancer compared with the group on placebo.
TRADING ONE PROBLEM FOR ANOTHER?
Joel Mason, MD, director of the Vitamins and Carcinogenesis Laboratory at the Jean Mayer USDA Human Nutrition Research Center on Aging at Tufts University, is author of a recent report on this topic in Nutrition Reviews. He told me the report generated controversy because folate fortification has so effectively reduced birth defects -- but his intent, however, was not to be "anti-fortification," but rather to
generate dialogue about a potential risk for one group of people in spite of the clear benefits for another at a time when many countries are considering fortification.
Paradoxically, there is sound evidence that folate, which has a pivotal role in DNA synthesis, protects against colorectal cancer. Dr. Mason speculated that perhaps its
very function of helping create DNA for new cells means that when ingested in large quantities, folate stimulates the growth of existing cancerous or precancerous cells that would otherwise remain stable. Another possibility relates to the fact that folic acid, rather than folate itself, is used to fortify foods because it is cheaper and also more stable. The body must convert folic acid into folate, he says, and ingesting an excessive amount of folic acid may overwhelm the conversion system, leaving a reservoir of synthetic folate that could have detrimental effects. Current research is exploring whether folic acid itself is cancer-promoting, but there's little evidence of this Dr. Mason said, so he believes it's more likely related to excessive intake of the vitamin, regardless of its form.
A FOLIC ACID MEASURE
In no way does this diminish the importance of an abundance of folate, says Dr. Mason, describing it as "healthful and in no way harmful." Dietary folate is available in a variety of foods, including dark green leafy vegetables, legumes, citrus fruits and berries.
And folic acid, for the most part, also is healthful and relatively few people are at risk for getting too much. Dr. Mason says supplementation adds a "fairly modest amount" to typical intake, about 100 mcg to 200 mcg per day. He noted that the situation only gets worrisome for those who routinely exceed 1 mg a day (1,000 mcg) of folic acid
through supplementation in a variety of forms. This would describe a person who takes a multivitamin (400 mcg of folic acid), a B complex (another 400 mcg), and then eats fortified breakfast cereal (typically containing 100 to 400 mcg). It's still morning and we already are at the ceiling of 1,000 mcg folic acid -- but then for lunch there is a sandwich with fortified bread (50 to 120 mcg for two slices), maybe a pasta dinner (another 100 to 200 mcg) and the total is nearly 1,400 mcg, clearly topping the upper
limit of safety. For those who snack on vitamin-packed energy bars and sip vitamin-infused water all day, the folic acid intake goes even higher.
There isn't enough data yet to make an absolute statement about folic acid intake, but the current recommendation regarding the uppermost safe intake level (1,000 mcg/day) continues to be an excellent guideline, Dr. Mason said. Vitamin labels clearly identify how much folic acid they contain, but it's harder to figure out how much is in fortified foods. The law says that all wheat flour, rice and several other uncooked cereal grains labeled as "fortified" must have added folic acid... but there are a few nonfortified examples of these foods on the market. You can look for these, but it might be easier to just be aware of how much folic acid you are ingesting in vitamin
supplements, because these appear to be the major source of excessive intake.
Source(s):
Joel Mason, MD, director of the Vitamins and Carcinogenesis Laboratory at the Jean Mayer USDA Human Nutrition Research Center on Aging at Tufts University, Boston.
Excess Folic Acid May Raise Cancer Risk
Where a little may be good, a lot may be hazardous... such may be the case with folate, and its synthetic form folic acid, the B vitamin that helps protect the nervous system and prevent anemia. For years now, the US government (along with Canada and Chile) has required that most breads, flours, cornmeal, rice and some other grains be fortified with folic acid as a way to reduce birth defects known to be caused by folate deficiency.
It's working -- incidence of neural tube birth defects has been reduced by as much as 50% in these countries, but at the same time, there has been another, totally unexpected development. All three countries have also seen rates of colorectal cancer rise, an abrupt reversal after years of decline -- with the increase estimated at an additional four to six cases of colorectal cancer per 100,000 people. Adding to that concern were the results of a large clinical trial published in the Journal of the American Medical Association in 2007 concerning folic acid supplementation and colon cancer. The participants, all of whom had previously had colon polyps, were divided into two groups -- one group took 1,000 mcg daily (this is considered the
uppermost safe limit and exceeds the daily recommended intake, which is 400 mcg) of folic acid and the other a placebo. After seven years, the study found that those taking supplemental folic acid were more likely to have multiple polyps, and at higher risk, than those who didn't take it. Even more troubling: A follow-up study of this same group found that after 10 or 11 years, those supplementing with folic acid had a three-fold increase in prostate cancer compared with the group on placebo.
TRADING ONE PROBLEM FOR ANOTHER?
Joel Mason, MD, director of the Vitamins and Carcinogenesis Laboratory at the Jean Mayer USDA Human Nutrition Research Center on Aging at Tufts University, is author of a recent report on this topic in Nutrition Reviews. He told me the report generated controversy because folate fortification has so effectively reduced birth defects -- but his intent, however, was not to be "anti-fortification
generate dialogue about a potential risk for one group of people in spite of the clear benefits for another at a time when many countries are considering fortification.
Paradoxically, there is sound evidence that folate, which has a pivotal role in DNA synthesis, protects against colorectal cancer. Dr. Mason speculated that perhaps its
very function of helping create DNA for new cells means that when ingested in large quantities, folate stimulates the growth of existing cancerous or precancerous cells that would otherwise remain stable. Another possibility relates to the fact that folic acid, rather than folate itself, is used to fortify foods because it is cheaper and also more stable. The body must convert folic acid into folate, he says, and ingesting an excessive amount of folic acid may overwhelm the conversion system, leaving a reservoir of synthetic folate that could have detrimental effects. Current research is exploring whether folic acid itself is cancer-promoting, but there's little evidence of this Dr. Mason said, so he believes it's more likely related to excessive intake of the vitamin, regardless of its form.
A FOLIC ACID MEASURE
In no way does this diminish the importance of an abundance of folate, says Dr. Mason, describing it as "healthful and in no way harmful." Dietary folate is available in a variety of foods, including dark green leafy vegetables, legumes, citrus fruits and berries.
And folic acid, for the most part, also is healthful and relatively few people are at risk for getting too much. Dr. Mason says supplementation adds a "fairly modest amount" to typical intake, about 100 mcg to 200 mcg per day. He noted that the situation only gets worrisome for those who routinely exceed 1 mg a day (1,000 mcg) of folic acid
through supplementation in a variety of forms. This would describe a person who takes a multivitamin (400 mcg of folic acid), a B complex (another 400 mcg), and then eats fortified breakfast cereal (typically containing 100 to 400 mcg). It's still morning and we already are at the ceiling of 1,000 mcg folic acid -- but then for lunch there is a sandwich with fortified bread (50 to 120 mcg for two slices), maybe a pasta dinner (another 100 to 200 mcg) and the total is nearly 1,400 mcg, clearly topping the upper
limit of safety. For those who snack on vitamin-packed energy bars and sip vitamin-infused water all day, the folic acid intake goes even higher.
There isn't enough data yet to make an absolute statement about folic acid intake, but the current recommendation regarding the uppermost safe intake level (1,000 mcg/day) continues to be an excellent guideline, Dr. Mason said. Vitamin labels clearly identify how much folic acid they contain, but it's harder to figure out how much is in fortified foods. The law says that all wheat flour, rice and several other uncooked cereal grains labeled as "fortified" must have added folic acid... but there are a few nonfortified examples of these foods on the market. You can look for these, but it might be easier to just be aware of how much folic acid you are ingesting in vitamin
supplements, because these appear to be the major source of excessive intake.
Source(s):
Joel Mason, MD, director of the Vitamins and Carcinogenesis Laboratory at the Jean Mayer USDA Human Nutrition Research Center on Aging at Tufts University, Boston.
__._,_.___
Thursday, September 10, 2009
Doing My Part for Healthcare Reform
My elected officials always disagree with me because I live in redneck country, but you know what ... I'm not giving up. Part of their job is to listen to me, and so I'm going to keep on keeping on. Here's what they got from me today:
As an uninsured, terminally ill and ineligible for Medicaid constituent, I am writing to urge you to help reform the healthcare system. Last night our President challenged you to reject the radical antics of your party and do your part to help us, American citizens. Prove to us that you are not in the pocket of Blue Cross and other big insurance and drug companies by contributing to a healthcare plan that is good for America. He clearly outlined what we need – it’s up to you to get it done. The only truly “bad” thing about what’s been proposed is the potential for fining individuals who choose not to afford any health insurance policy. You should seize the opportunity to better your bi-partisan reputation by offering an alternative to that. American citizens must not be required to have medical insurance; but rather, they should be required to pay their own way if they so choose. This can be accomplished with a waiver of sorts or by noting regular contributions to a medical savings account on income tax returns.
GET 'R DONE!
As an uninsured, terminally ill and ineligible for Medicaid constituent, I am writing to urge you to help reform the healthcare system. Last night our President challenged you to reject the radical antics of your party and do your part to help us, American citizens. Prove to us that you are not in the pocket of Blue Cross and other big insurance and drug companies by contributing to a healthcare plan that is good for America. He clearly outlined what we need – it’s up to you to get it done. The only truly “bad” thing about what’s been proposed is the potential for fining individuals who choose not to afford any health insurance policy. You should seize the opportunity to better your bi-partisan reputation by offering an alternative to that. American citizens must not be required to have medical insurance; but rather, they should be required to pay their own way if they so choose. This can be accomplished with a waiver of sorts or by noting regular contributions to a medical savings account on income tax returns.
GET 'R DONE!
Tuesday, September 8, 2009
Hmmm, something to talk to the doc about
It's no secret that I have had major concerns about the gut-busting side effects of the various drugs I've been prescribed for RA. I'd previously reported my glee at taking myself off the Ketoprofen, and then my annoyance at being urged to stay on it. I'm afraid I may have to fess up about my unwillingness to stop drinking alcohol (though I have cut way back). This weekend, however, I added a pain med (prescribed to me by my RA doc) in addition to having had a bit to drink along with my regular meds. I was really wanting to get some uninterrupted sleep because I've been so tired lately. My concoction backfired. The pain med usually causes me some nausea the day following a dose, but it's short-lived and never productive. This Labor Day combination made me so nauseous, it woke me up. After hacking up what looked like a large blood booger (about nickel sized), the nausea subsided and I was able to go back to sleep for a little bit. I wouldn't say that I really felt bad the rest of the day, but I was a little freaked out by the morning's hurl.
It's time to get my annual TB test. I've had the order for it for several weeks, I must remember to get that done.
It's time to get my annual TB test. I've had the order for it for several weeks, I must remember to get that done.
Friday, August 21, 2009
Nothing Much to Report
... which is good, I suppose! I visited Dr. Z for a check-up and labs yesterday. She reviewed the last labs I had (a month or so ago) and reported "everything looks normal" meaning no inflammation, normal liver & blood count tests, etc. The guy who used to do my joint counts each time is no longer there, so a different nurse did that - I must say she wasn't nearly as thorough (or really as pleasant) as Tom had been, but whatever. I had very little visible swelling, but the normal amount of random, tender joints. My shoulders have been pretty sore over the past week - I may have overdone it outdoors and I also think it might be time to flip the mattress. It is time for my annual TB test, so I will have to do that in the next week or so. My next visit is already time for another infusion in November - it'll be here before I know it.
Thursday, July 2, 2009
Dr. Mercola on the Propaganda Train?!
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.
"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.
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!
Subscribe to:
Posts (Atom)