Sorry I’ve been absent from my blog for so long. I’ve been taking a kind of “vacation” from all things RA, while I am also literally on vacation. The RA vacation was unintentional. I’m spending the month at my parents’ house, across the country from where I live, and ever since I got here, I just haven’t felt like dealing with RA. I’m still taking my meds and everything, but I’ve stopped keeping my health journal, and I’ve been pushing myself a little too hard, trying to feel “normal.” It’s starting to catch up with me a bit… so here I am, reminding myself that I need to give the RA a little attention. (Damn… this really interferes with the nice denial streak I had going!)
My rheumatologist recently made the decision to increase my Remicade to seven vials. I know there have been people on higher dosages, but still, this seems pretty high to me. It also makes me one of his highest-dosage patients. I have my fingers crossed that seven will be my lucky number. I think I’ve been really determined to prove that this is the case, so I’ve been ignoring the slow, creeping return of my symptoms since the infusion. (The first week, I think, really WAS good.)
Because of back-to-back UTIs, I wasn’t able to get my infusion when I was supposed to, right before my trip. So I ended up having to make arrangements to see a new rheumatologist here in the state where my parents live. My hometown rheumatologist was great about sending him my records and labs, and I also came to the visit prepared with copies and information for him. I’ve written before about my infusion experiences, and this was a chance to see yet another environment. But I’ll write about that another time… long story short, it was a basically good experience.
This was the first time I’ve had seven vials, and I was absolutely determined that this time it would work. I had also just had a landmark birthday the day before the infusion, which doubled my determination. I feel that in general things have been on an upswing, and the new rheumatologist seemed to think so too. It’s nice to have fresh eyes looking at your case sometimes, and he said that from my most recent labs and my joint examination, I actually look like things are beginning to be controlled. There are just two stubborn blood numbers that are going up and not down, but that doesn’t necessarily mean that I am getting worse – sometimes blood numbers just do funny things. I’ve also been questioning things lately, wondering how much of my fatigue and achiness is really the RA as opposed to my recent problems with adrenal insufficiency, or even muscle weakness due to not exercising. (The adrenal insufficiency, by the way, seems to be reversing itself beautifully, and I am finally off prednisone! Yay for something good!)
So all of this determination and pondering and questioning have led to a kind of thinking that goes something like this: My blood numbers look basically very good. My joints look great. My AM cortisol and ACTH levels are now in the low normal range instead of the basement. Going off prednisone, shockingly, did NOT result in a major flare (Hallelujah!). Therefore… Maybe my RA is not really active right now. Maybe I need to start testing this a little and find out what’s really up. Maybe I need to build up some strength after being unable to do things for so long.
I really don’t know whether this is denial or not. All I can tell you is that I’m not doing so well right now. And it’s giving me a chance to look at something else: my deep need for an EXPLANATION. I can’t just accept that I’m feeling tired and achy and cranky – I need a label to put to it. I can’t make sense out of feeling this way while my inflammation markers are low. I’ve always had aggressive sero-positive RA. I am realizing that it must be damn frustrating to be sero-negative, when you feel like crap and know something is wrong and nothing is showing up on labwork.
Interesting… this blog entry has taken a completely different turn than I expected. I was just going to come on and write a brief note about hoping that seven will be my lucky Remicade number. Who knew all of this was going on?
I guess that’s why we do this blogging thing…
Tags: Adrenal Insufficiency, Denial, Doctors, Medications, Remicade
Aggravating to be feeling bad when you were feeling so much better. I wonder if some of your fatigue etc. right now might be, simply, a result of your increased activity? RA does fluctuate, though, and different symptoms show up at different times. I don’t think you’re in denial at all. You’re just looking for answers, and we all do that. It’s healthy. It means you’re engaged, actively working toward wellbeing in all senses of the word.
Welcome back, RD. Missed your “voice” here in the blogosphere. I hope that you’ll start feeling better again once the meds even out and you establish a new daily routine.
-Wren
Wouldn’t a vacation from RA be nice? That would be one vacation that would make me decide to retire permanently!
I hope 7 is your lucky number!
Great to hear how you are doing. Was looking forward to hearing from you. Yeah, no more prednisone! Boo to not feeling great and blood work looking better. That’s me though. : ) Perfect blood work, but pain so bad lately I don’t want to even be on my feet. Doctors thought it was amazing that I could have so much visible inflammation, yet not a suggestion of it in my blood work. My hands have never hurt so badly either. Going to try antibiotic route soon with new doc. But feeling awfully crummy like you lately. I find it very interesting that you had two UTIs, but your adrenal insufficiency is reversing itself. I had a UTI after last pregnancy and it turned into a horrible kidney infection. Antibiotics cleared it right up. Also had a crazy rash on my trunk that disappeared beautifully on its own after weeks of it gradually getting worse just recently. I believe it was RA related and connected to function of lymph system (my theory–not doctors) due to it’s location. It is connected to the adrenal system since both are a part of endocrine system–which means we both had an endocrine issue that reversed itself, but reeked a bit of havoc while it was present. Read that our adrenals are ” the chemical policemen that regulate the functioning of our bodies and minds”. Wow! Here’s hoping seven is your number. It’s the number of perfection in the Bible. : )
Glad to have you back on line and even better to hear the good news. (Don’t we always fear the worse when there’s radio silence?) Happy birthday and warm wishes that this year, and the number 7, will prove both lucky and healthy for you. All the best – C