What did you just say?

Dr. Z: Did I give you that paperwork for Humira?

Yes. I have been thinking about what it is holding me back from pursuing that. I have a diabetic child at home whose immune system is as vulnerable as mine, maybe more so. I really don't want to take anything that is going to further compromise my immune system than I am now. I may have aches and pains but I'm functioning.  I can't risk getting really sick and then her getting really sick.

Dr. Z (with a disapproving frown): How old is your daughter?

Six.

Dr. Z:  The methotrexate may make you feel like you can function and "be fine," but the disease is still progressing. You're more likely to get sick from the disease than from the biologic medicines. You're going to want to be around when she's 13 or 14.

Hm. (Silence. Thinking, did you just tell me I have less than 10 years to live on my current course?)
Why is there no treatment that won't further compromise my immune system?

Dr. Z: That's the way it is.

Nature of the beast?

Dr. Z: Yes. You have an auto-immune disease. To stop it, the drugs must suppress the immune response. You were doing better during the study than you are now. Humira or another study is no different than what you did before. Methotrexate compromises your immune system.

(Thinking, well that sucks ass ... she is telling me I have no choice other than take the meds or die young.) I know it does. I don't want to take more. I was desperate for any treatment when I did that study.

Dr. Z: You need to think about it. Most of my patients on biologics are doing very well and aren't sick.

(Thinking, most ...)
I'll think about it.

****end of recap****

So, I'm thinking about it. I'm thinking I hate going to the doctor. I'm thinking my weight is up to the highest it's been in 14 years (pregnancies aside), and that is not helping what's left of my self-esteem. I'm thinking it's time to get serious again with the avoiding of dairy and sugar, for my self-esteem and for my disease. I'm thinking I'm going to go ahead and ask my daughter's acupuncturist next week for her input. I'm thinking my doubting of any higher power is strong as ever because she just told me if I don't take some sort of immune-suppressing injectible drug, this disease is going to kill me sooner than later. I'm thinking I am not even 40 years old. I'm thinking I have three very active children who need me right now and I can't afford to be sick, and I certainly can't afford (nor live with myself) if my uninsured, diabetic baby gets sick. I'm thinking I have to teach her NOW how to take care of herself LATER. I'm thinking of the hypocritical irony of that. I'm thinking this really makes me mad. I'm sad. I'm alone in this. I'm responsible. I hate this. Fuck you, rheumatoid arthritis.

Ouch

I get my MTX shots mid-week, and I've noticed by the weekend, some joint is hurting more than the rest. I suspect one that's been overworked. (I'm a little stubborn about asking for help.) I try really hard not to complain. This weekend, it's my right wrist. I just have to say, "EEEEERRRRRGH. IT REALLY FREAKING HURTS."

I Decline, Thanks Anyway

I fasted for 12 hours in preparation for a screening visit for a new clinical trial. The rainfall my area has received in the past month is crazy, and it has wrought havoc on me. So, after not sleeping well for over a week, lacking coffee this morning (which gave me a headache), and my Facebook exploding with people irritating me over their need to see the dead body of The King of Terror, I was decidedly cranky. Over the weekend, I tuned into that little voice telling me this study wasn't the right direction for me, but yet, I fasted just in case.

My visit began with the normal find-your-initial-cup-to-pee-in, but this time the cup had instructions taped to it, and a strip of sanitary wipes. Despite being pretty confident in the cleanliness of my lady parts, I followed the instructions using all three wipes and eeked out a little tinkle for them (not an easy task when you're fasting). I sat in the waiting room freezing my toes off for a few minutes until my ultra-cool (read: tattooed and laid back) research nurse Laura sat down beside me. As I took the consent papers from her, I shared my uneasiness with her. I didn't know she has RA, too. I'm pretty sure she's younger than I am, and I wanted to cry and smile all at the same time when she shared that with me. She knew exactly how I was feeling with all the rain (and offered to take me with her if she ever goes back to Arizona, lol). She left me to read through the study information. She was obligated to be non-biased in the discussion about the study because she can't legally advise me one way or the other. She did, however, encourage me to listen to my gut instinct, and I *really* appreciate that.

This study offered compensation at $40/visit and they would also pay for medical treatment if I am harmed by the drug. I think that is strange, and it heightened my anxiety over the study.  This study differed from the last one I did in several ways. It's further along in the clinical study process than Okra was and already has the Open Label Extension started (but I wouldn't be eligible for it until 52 weeks of the first phase). The administration of the drug is via shots I can do at home instead of an infusion in the office. The drug isn't named except by a series of letters and numbers (LY2127399) - which explains why I couldn't find any online information about it since its slang name is "Lillyflex". The list of claimed side effects was long and disturbing.

Medicare is effective for me beginning next month. Honestly, I haven't looked at the paperwork for that since I got it in the mail a couple of months ago. (Note to self, you have to stop procrastinating on these things.) Honestly, I don't know how it will affect my treatment, except that it will enable me to try something already on the market at out-of-pocket cost less than what I'd get it for now as a self-pay. If I start this study, unless I quit the study, I would be prohibited from adding any other medications. I don't know if those other medications will be effective, but I'm hopeful since I know Okra worked for me. Then, there's also that nagging flip side of the coin that reminds me that they stopped Okra because people were getting gravely ill, and Okra is very similar to Remicade. I will listen to my gut when that time comes. In the meantime, I am going to return to my dietary changes - strongly cutting back on dairy and sugar - and just deal with the lack of sleep, fatigue, weakness ... and I will count down to the summertime heat that my joints love so much, and I will beg of Mother Nature to give me a break with the spring rain.

If you're reading this and you have RA, hang in there and don't try to be a hero, and listen to that little voice that guides your choices. If you're reading this and you love someone with RA, be sure they know they can count on you, and pay attention to ways you discretely can help without them asking or feeling like a patient. (By this I mean, for example, if your loved one grabs a water bottle with a screw cap, say, "Can I open that for you?" instead of waiting for them to ask for you to open it (after they've tried in vain for themselves) and instead of asking, "Do you need help with that?") We hate asking for help - we feel like a burden on ourselves and our loved ones. We are trapped in our gnarled bodies, and the damage you can see pales in comparison to the damage you can't see.

happy.new.year.

I had my last research safety follow-up visit to the doc today. No more carbon copy, repetitive questions to answer. No joint counts. Nobody called to let me know this was the last one. My shoulders knew, though. I don't know if I was getting a half or full dose of Okra, but it has worn off now. At least I hope there's nothing more it's masking because I feel like a flare is coming on, and if there is more ... oh, shit ... I think it's been over a year since the last one, and the fear of it is overwhelming.

She switched up my medication in hopes of relieving the constant shoulder pain. (Which began in the left, oddly enough, but is now also in the right but less so.) She added Prednisone. It's cheap. She switched out Ketoprofen (with whom I've developed a love-hate relationship through the past .. man, six years. Hadn't considered that lately.). The new NSAID is Mobic/Meloxicam, the latter, generic, of course, because it's cheap, too.  I am also ordered to start the PAP process for Humira. (Who will "pay" for your MTX for 3 months at the low, low cost of Five Dollars ... even if you don't qualify. ~applause and woooo~) Sigh. Such is life, eh?

Someone stole my urine sample today. I'm actually really weirded out about that part of the visit. I had a new research nurse today. I had a different one last time. Since she promptly informed me this was my last research visit, we got off to an uncomfortable start and I didn't ask for details of the change in staff.  After she took the 5 vials of blood (which really hurt, by the way), stumbled through what she thought she was supposed to do, she left, I presume to do whatever the research girl does with the urine specimen I left outside the bathroom on my way to check-in (like I always do). She came back and questioned if I'd left it. She came back again and asked where I left it; she couldn't find it. It's a cup of pee with my initials on it. Really, you lost it? I left it, the only one with liquid, with the dozen other initialed cups yet to be used that day. She looked again. I went and looked. It was gone. I psyched myself up so that I could produce another. Who Took My Pee?? What is taking the doctor so long to see me? Damn, my shoulders hurt. She returned. She found it "in the bottom of the trash can". WHAT? She claims it was still usable. She showed me with her finger and thumb about the same amount I'd left in it. Strange.

So, that was it.Go back in 8 weeks, on my dime.

Except for that TB test I finally got over to have done afterward. That hurt, too. Plus she squirted it all over the crook of my arm. Nice. We'll see in 2 days.

Methotrexate RECALL

"Sandoz Inc. announced on October 26, 2010 that it is initiating a voluntary recall in the US of all 50mg/2mL and 250mg/10mL vials of Sandoz and Parenta brand Methotrexate Injection, USP product (“methotrexate”) to the consumer/user level. Consistent with its commitment to quality and patient safety, Sandoz is initiating this voluntary recall of all 24 lots of the affected product following the finding of small glass flakes by Sandoz quality control in a limited number of vials and lots."

For more information, click here.

Injectible

My husband gave me my first injection of Methotrexate last night. The needle was quite a big larger than we expected (we are used to diabetic pen-needles we use for our daughter) but it needed to be because .8 cc is A LOT for one shot.  My husband was gentle, and the insertion of the needle wasn't bad at all, but the more he injected, the more it hurt.  By the time he had it all in, I have to say my bottom hurt!! (We opted for the fattiest part of me since the needle was bigger than expected. I'd hoped to do it in my arm, but I don't think that's going to happen, at least for a while.) Fortunately, it went away within minutes.  All in all, it was MUCH better than swallowing all of those pills. I noticed a new warning on the injectible that hadn't been on the oral med: May Cause Dizziness.  I stayed put while the soreness wore off, so I didn't experience that feeling - I suspect the dizziness could be from the volume of the med.  We use a numbing cream before we set my daughter's insulin pump, so next week I'm going to use a dab of that first to see if it makes a difference in the soreness of the injection.  Today I feel like I do on most Thursdays, better than the rest of the week. I am hoping the effect of the injection doesn't wear off as quickly as the oral med does.

I ordered my meds online for the first time, using a website called Health Warehouse. It was MUCH less expensive than any of the local pharmacies, and despite a few snags with getting the prescriptions transferred and verified, they sent my order overnight so I wouldn't miss a dose (or have to fill it locally for the week). I'm pleased and look forward to saving money using the online pharmacy.  I do have some measure of guilt over switching from my local small pharmacy we've used for a decade, but when you have no insurance, your kids have no insurance, and one of your family members is Type 1 Diabetic and one has RA, and the price difference for the same meds is so large ... well, I had to do what I had to do.

B Cells, Meds and More

My most recent visit to Dr. Z revealed what I had suspected ... I was getting Okra. I don't know the dose, but since my B cell count is still low I continue to be followed by the researchers. We'll see what the recent labs show, and how long that will continue.  I also discussed with Dr. Z my increasing gag reflex when I take the MTX every week, and what appears to be a diminished effect (stiffness has been returning a few days before dosing day instead of just a day before). She offered to increase the dose by a pill, which I declined (I am having some serious issues swallowing the little buggers, and I know it's mental). Before my daughter was diagnosed (November 2009) with diabetes, I'd have never dreamed I'd ask about injectible meds. Alas, Dr. Z says the injectible MTX is more effective with less side effects. Sign me up! So, I have another week of pills, then I'm cashing in my new prescription for vials, needles and syringes.  If my 5 year old can endure 1000 shots in just over 6 months, certainly I can endure one a week!

About prescriptions ... since I'm now getting Social Security Disability (but not Medicare yet, waiting period), my children have been terminated from SoonerCare coverage. This has left me scrambling for alternatives to the outrageous costs of cash-pay medical expenses.  (An interesting note, the insurance company was paying $12 for my MTX. Cash pay at the same pharmacy for the same prescription was $40.  So, the next person who wants to argue with me that health care doesn't need reforming, LOOK OUT!)  I've discovered several resources I am happy to share.  First, NeedyMeds.org ... this is a GREAT resource - you can search meds by their name or by the disease they treat. There are lots of programs here.  Next, HealthWarehouse.com ... hello, savings! And, if you call them to order a new Rx or a transfered Rx, mention "First Month Free For Me" and your first month of generic prescriptions is FREE! And, if you "Like" them on Facebook, you get a discount code for a $50 non-prescription order.

As for how I'm doing with my disease ... still no cure. The rain continues to flare it. My fingers continue to morph into useless ugly appendages. My joints still lock up (I couldn't bend one of my toes for a couple of days during the last rainy session we had). Some days I limp because my foot or my knee aches. My typing accuracy is a CHALLENGE.  However, the sun still shines, my children still giggle, my husband still loves me, and I am still here to enjoy it, so I keep movin'.

Labeled

It's official. I've been labeled ... physically disabled. I'm not sure how I feel about it. There's a part of me, somewhere deep inside, beyond my gnarled outer self, a part that is pissed about it, defeated. However, when it's Tuesday morning and it's clear to me that the MTX I took the Wednesday before has done all it can and I have two full days still to get through before I take the next dose, and I know I can't afford to take any other RA prescriptions, I ... am ... disabled, undoubtedly. I am skeptically optimistic that this label and all that goes with it will, indeed, be the relief I need.

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.

 

lying "flat"

at rest

 

grasping/fist

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.

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!!!

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.

__._,_.___

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!

*I* Can't Wait

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.

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.

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.

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.

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!

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.