Posts Tagged ‘Adrenal Insufficiency’

The Stress of Wellness

Thursday, March 22nd, 2012

A strange topic, I know.

I was doing very well for the past several months. It was starting to look very much like remission. I was able to go out and have fun with friends, to enjoy playing with my son, to go for long walks. I was even able to get back to Irish dancing, something I had to give up when I first got diagnosed. I experienced bursts of creativity the likes of which I haven’t had in years.

And you know what? It stressed me out.

For years, I’ve been telling myself, “If only I didn’t have RA, I would do this and this and this and this…” So eager was I to get back to “my life” that when I finally hit a point where it looked like I could, I was overwhelmed. So many possibilities! So many choices! So much pressure to seize the day, to make every beautiful pain-free moment count.

I danced, I sang, I played the piano, I fiddled around with my guitar, I jammed with a friend, I contacted old friends, I hosted a game night, I took long walks, I got errands done… And every night I lay awake, unable to relax, riddled with anxiety.

When you have RA, you know that there isn’t a cure. You know that the good times may not last. Sure, some people have remission that lasts for years. Still, even these people can wake up one morning, suddenly unable to move. I know one woman who had a 25-year remission, and the beast still came back. I’ve also seen this theme showing up on a lot of the blogs I read lately – people whose periods of remission, or something like it, have come to an abrupt end.

Anyway, it may be coming to an end now. I’ve been in something strongly resembling a flare for the past two days – low-grade fever, extreme fatigue, trouble walking, a big ganglion cyst on my left wrist. My interstitial cystitis, too, has been miserable after a very long period of quiet. I had to miss dance class tonight, to my heartbreak. I am hoping that this is just a bump in the road, that it will pass and I will get back to the state I’ve been (sort of) enjoying for the past few months. Stress or not, it has been so wonderful just to feel good.

Hard to say if it’s a flare, because there are other things going on – for example, recent lab tests showed that my adrenal insufficiency has returned with a vengeance, and I know that this can sometimes cause symptoms very similar to those of RA. (More on all of that in another post.) Either way, I’m no longer well. Maybe, oddly, this will relieve some of the stress?

Nah, maybe not.

Nope.

Sunday, September 19th, 2010

I’m sorry it’s been more than a month since I wrote.  It’s been a tough time and I’ve been very sad. 

For those of you who were left hanging by my last post, the doctor declared it not remission, but a “near-remission experience.”  My bloodwork did look great, and my symptoms were on the whole SO much better, but joint examination showed that there were still just a few joints that were in a state of active inflammation.  That’s still great, amazing progress for me, and we were both in a very hopeful place.

Then the flare hit.  It began with an IC (interstitial cystitis) flare that wouldn’t get under control and soon triggered a full-on RA flare.  Fevers every afternoon, swollen fingers and knees, brain fog, exhaustion, the whole nine yards.  It’s far from being the worst flare I’ve ever had – the IC was actually much more difficult and painful to deal with this time around than the RA – but it’s not a good development.  Whether I got rundown from the IC or from stress (there’s been a lot of it lately, which I won’t go into) isn’t clear, and maybe isn’t even important.  The point is that I’m back in a bad place now.  I’m also back on prednisone, which I worked so hard to eliminate.  This really broke my heart, especially since it’s not a good step in the battle against adrenal insufficiency, which I was winning beautifully.  On the bright side, the adrenal problem was really caused by long-term daily pred usage.  Since this is intended to be a short-term pred taper, and since my adrenals have recovered almost completely, it’s not likely that it will trigger the same problem again so quickly. 

My Remicade infusion is on Thursday, and I hope it will quiet this down.  I also had labwork done on Friday, so we’ll see if it shows anything new, and talk about medication changes if it does.  In the meantime, I guess all I can really do is hang on.  I’ve been here before, and I can do it.  I’m just disappointed.

Lucky Seven?

Saturday, July 17th, 2010

642736_lucky_seven

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…

Becoming Visible

Thursday, April 8th, 2010

invisibility-cloak

For the most part, my illnesses are invisible.  I’m not in a wheelchair, I don’t need to walk with a cane except on rare occasions, and I don’t have visible deformities.  I’m the type of person who gets dirty looks when I use my disabled parking tag.  There have been huge (massive, really) changes in the way I look since my onset, but only people who knew me before would know that.  People seeing me for the first time would probably just see a fat woman, unless they’re really familiar with the distinctive look of steroid puffiness.  (I find that I can now spot it on other people.)  And although it rankles that most people who knew me before probably just think I’ve really let myself go in the past few years, I appreciate the fact that I can choose whether to disclose my illness or not – it’s not obvious.

But now…

I’ve written before about the fact that I’ve now been diagnosed with adrenal insufficiency.  This is probably a direct result of the RA, in one way or another - whether it’s because of prednisone overuse or because my adrenals have been attacked by the RA isn’t clear at this point.  (Probably the prednisone.)  But the bottom line is that because I have shown no improvement in the two months since it was discovered, I am now on hydrocortisone, and will be for quite some time.  And since adrenal insufficiency is a dangerous thing to have, it means that last night I had to buy one of these:

medic alert  

Yes, I know that lots of people wear these – most diabetics have one, and people with things like peanut allergies wear them too.  But can I be honest here, and tell you how much this step bothers me?  It announces to the world, “Something is wrong with me.”  It takes something private and makes it public.  It takes away a small piece of my choice – I know that I still don’t have to discuss my illness with anyone, but I can no longer pretend I don’t have one.

And yes, most people are pretty unobservant, but I teach piano.  I sit right next to students and they look at my hands.  There is no way they won’t see this.  And I just don’t want to talk about it.  I’ve worked hard to keep my health situation private at work, and I plan to keep on doing so.

I just feel as if another little piece of my “normal” has fallen away.

Yesterday I had a long, long, conversation with my husband (okay, more like a vent TO my husband) about feeling as if there’s a sharp dividing line in my life between the old me (pre-RA) and the new me.  My husband and I have been married for three years and four months, and we dated for two years before that.  Next week marks the three-year “anniversary” of my diagnosis, and for some reason, this made me realize that we are past the tipping point – he has known me for longer with RA than without it.  I wonder if he even remembers me the way I was.  (He tells me that he does, and that he still sees so much of the “old me” in me today – isn’t he sweet?)  But it really, really bothered me to realize that the dividing line is getting farther and farther behind me, and I feel as if all of my achievements, all of the good things about me, are behind it.  I don’t know why, but this bracelet just feels like a symbol of that, a visible daily reminder that I am not who I once was. 

In one of those weird acts of synchronicity that frequently happen in blog-land, I saw this post from RA Warrior yesterday, AFTER this conversation.  And it was comforting.  It reminded me that whatever I am feeling, whatever I go through in this crazy funhouse called autoimmune disease, someone else has been there too, and understands.  And that may not make it all better, but it sure helps.

P.S. – I recently saw a friend that I haven’t seen since the summer, and finally told her about my RA.  She said, “Yeah, you really looked sick last time I saw you - I wondered what was wrong.”  So much for my cloak of invisibility!

Insufficient

Wednesday, February 3rd, 2010

funny-pictures-cat-is-losing-energy

My doctor is a smart man.

I knew this about him, but I was reminded of it this week.  When I called him with the symptoms I described in my last blog post, I really thought it was because my liver enzymes were elevated.  Last time they were elevated, I felt about like this.  But he knew what to look for.

The tests are back, and the answer is, in fact, adrenal insufficiency.  Both my cortisol and ACTH levels are in the basement, really alarmingly low.  While this can mean something more serious, like a pituitary tumor, the most likely explanation is prednisone overuse.  I’ve done three high tapers since December.  The sad part is, I am still flaring.  So I’ve been exhausting my adrenal and pituitary glands, and it’s not even working.

For right now, the answer seems to be to finish this most recent pred taper, then begin the process of getting off the stuff.  My doctor says that we will have to be very careful about my prednisone use from now on, and he will be monitoring the adrenal situation.  I’m not looking forward to the next several weeks (or, more likely, months).  I am already beyond exhausted, and getting off pred is never a picnic, even when there isn’t this sort of problem.  I know that I can expect a rough road ahead.  And even though I’ve always had a love/hate relationship with prednisone, and some part of me is delighted to put it behind me, it’s still scary wondering how I will cope with flares without it.

There’s also the bigger issue – why is my RA out of control right now?  I’m due for a Remicade infusion in a week and we are going to increase the dosage yet again.  If this doesn’t work, it may be time to say goodbye to this drug.  I am growing concerned that I’ve developed an immunity to it – it almost seems as if it was working better at lower doses.

But for the last week or so, it’s been all about the adrenals.  Yes, my RA is flaring and there’s pain, but the adrenal thing scared the heck out of me.  For a period of several days, I knew that my cortisol was low but was waiting on the ACTH.  All sorts of scary possibilities presented themselves, like Addison’s disease (which, thankfully, I do not have).  So I’ve been tense and exhausted and moody and impossible to live with.

Anyway, we’ll see where things go from here.  I’m seeing the doctor on Monday to talk about all of this.

Oh, and by the way, I wasn’t entirely wrong – my liver enzymes ARE elevated.  But they’re not as high as they were when I was suffering from symptoms last time, and they don’t seem to be responsible for this recent bout of exhaustion.  Still, something else to think about…