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.
Tuesday, September 20, 2011
Monday, May 30, 2011
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."
Monday, May 2, 2011
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.
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.
Tuesday, January 4, 2011
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.
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.
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