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.
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