Pains and Aches

December 6, 2011 at 4:08 pm (Uncategorized)

I just got some bad health news. It’s amazing to me that after nearly eight years in Chronic Town I still get shocked and overwhelmed and sad when I suffer a setback. I suppose it’s a testament to my capacity for hope (as well as my steadfast commitment to denial.) Nevertheless, it sucks.

A few days ago the joints in my left hand started aching. I thought perhaps I’d slept on the hand funny. Then my other hand started hurting. Then my knee. By the early hours of last night—when I lay awake, in pain, until 4 AM—it felt like every joint in my body was aching and thrumming.

I knew that the sarcoidosis was flaring back up in my joints, but I didn’t really want to admit it to myself. Nevertheless, I forced myself to go to the doctor this morning. He ran some labs and then sat me down. I was devastated when he told me that I have very suddenly had a major disease flare-up. My blood work was a little weird at the end of October, but it looked like that was being controlled by my host of meds, and two weeks ago it was about as normal as it gets. Today, all the markers the White Coats use to measure inflammation are way, way up. And they’ve rocketed back up despite my persevering with the monthly infusions of Rituxan and Remicade, and me taking my heavy-duty daily cocktail of those other immunosuppressing big guns, CellCept and prednisone.

So now there’s a new plan. Well, actually, it looks a lot like an old plan – one I was very happy to have left behind me (or so I thought). Think of it as a prednisone bomb – back up to 80 mg. of prednisone a day from the 10 mg/day I had worked myself down to. If you’re one of my readers who’s been on (or is on) 80 mg/day of what one of the White Coats calls the Devil’s Wonder Drug, you’ll understand why I’m daunted. If you haven’t experienced the mood swings, bottomless hunger and exhausted jitteriness of life on high doses of prednisone, count your blessings. The doctor also x-rayed the most painful joints to make sure the disease isn’t damaging them too much. He’s going to call my sarcoidosis specialist in Ohio, too, and if I’m particularly lucky maybe learn there’s a brand-new, symptom-free treatment for the rheumatic symptoms of sarcoidosis. Otherwise, I’ll have to stay up on the prednisone for the time being.

I feel like I’ve been whonked upside the head with a very large rock. The speed with which this disease has (again) moved through my body is terrifying. To be honest, it’s the utter rapidity of this flare-up that has prompted me to write this today, even though my fingers ache on the keyboard and my mind is buzzing in ever tighter circles with the bad news and the huge hit of prednisone. Life changes so damn quickly—even when you think you’re prepared for bad news and practiced at living with a chronic illness. But the same radical transformations can happen to all of you. I hate to be preachy and sentimental. There’s enough of that in the world. Yet I have to say this. Be aware of the wonders and the joy and the possibility in your life. It’s so easy to take for granted. And it’s also so easy to lose.

Send me your prayers, healing thoughts, and good vibes. I need them.

As always, thanks for reading. By accompanying me on this journey, you all make it so much easier.

25 Comments

  1. Leanne Shirtliffe said,

    Oh, Rebecca. What horrible news. Horrible. I cannot imagine. I once had a very bad reaction to prednisone (a measly 30 mg a day for a week I think), so I cannot imagine 80 mg.

    I am praying. And holding you up to the light. And hugging you from afar.

    Love Leanne

    • Rebecca Stanfel said,

      Thanks Leanne. I really appreciate your kind words. And, yes, you can imagine 80 mg. of prednisone if you were on 30 and had a bad reaction. Prednisone is an amazing, life-saving drug. I’m glad it’s in the world. I just wish that no one needed to take it.

      Thanks for reading and taking the time to comment

  2. Randy Bekkedahl said,

    So sorry to hear the news. Hope the medicine man in Ohio drums up something wonderful for you. Going back on the prednisone bomb is awful news, what a weight to carry, knowing exactly what it will bring.

    I’ll be sending good karma thoughts your way and hoping for some improvement.

    Being in Chronic Town sucks.

    • Rebecca Stanfel said,

      Thank you Randy. Yes, it does suck being in Chronic Town. I know you’ve had a bad patch recently too. The challenge for those of us dealing with ongoing health challenges is maintaining resilience. I’m definitely feeling like I’m lacking that now. I feel emotionally and physically brittle, as if each bit of bad news might shatter me. This isn’t helping me, though. I’m in this for the long haul. So, I’m trying to take a few deep breaths and remember that I’ve done this before and made it through. I can do this.

      Hoping you are feeling able to live with and through your current challenges. Let me know if I can help.

      rebecca

  3. Rayna said,

    Ugh! I enjoy reading your blog so much! But, I hate hearing news like this. Hope you catch the positive vibes coming your way from Atlanta.

    This, too, shall pass.

    • Rebecca Stanfel said,

      Thanks Rayna. I’ve got my catcher’s mitt out. I’m getting them.

      Sorry for delivering bad news. But I really appreciate your kind words. And you’re absolutely right. This is going to pass. I’ve done it before. I can do it again. It sure helps to know that you and my other wonderful readers are with me.

      rebecca

  4. Wendy Barron said,

    Oh, Rebecca, what rotten news. I’ve been on pred before, but only low doses. Bah, ick, ptooey.

    Has your doc (or anyone?) talked about what you eat, with an eye to reducing systemic inflammation? I am wondering if eliminating some of the common digestive irritants (grains, sugars, legumes, processed foods) and switching to whole foods (meat, fat, vegetables, some fruit) might help you. I know that not everyone in the medical community is informed about the (proven) benefits of eating this way, but I’m hoping there’s someone in your caring circle that might be.

    Unless you’re already eating that way, in which case I have nothing to offer but prayers and moral support. Chin up, lovely. *hugs*

    • Rebecca Stanfel said,

      Thanks, Wendy, for the prayers and the thoughtful suggestion.

      You’re absolutely right that White Coats (as I call traditional medical practitioners) aren’t always informed about all the positive health changes that eating with an eye towards healing and nurturing can bring. I could definitely do a better job of this. I am resolved not to gain any more weight on this latest prednisone boost. I had my husband stock the house yesterday with green, leafy veggies and lots of citrus. I am cutting out junk food and trying to follow a “clean eating” plan my all-around wise diet coach Sandra Ahten taught me–brown rice, unlimited fruits and non-starchy veggies, and non-meat protein. It’s hard though. Not only does prednisone make me really hungry, but it causes me to feel this nauseous–and simple, starchy stuff helps with that. So, I am doing me best, but not letting the perfect be the enemy of the good.

      Interestingly, there seems to be more and more evidence that nightshades (tomatoes, peppers, and eggplants) boost inflammatory problems for folks with rheumatoid arthritis and sarcoidosis and other auto-immune diseases.

      I really appreciate the reminder of the role of good food. And for your kind words. And for reading and commenting. 🙂

      rebecca

  5. Sandra Ahten said,

    That is rotten news.I wonder how much a prayer/ healing ceremony would help? I have a teleconference line you could use, and although I’m not a “healer” per se, I’ve can send energy…and I have a friend who is a “healer” I bet I could get her to conduct it. Where two or three are gathered.!

    Let me know. We could do it with or without you, on the line with us. You would just need to send a note to your friends and family to join us on the teleconference line.. or in thought at that time.
    What say you?

    • Rebecca Stanfel said,

      That is amazingly and wonderfully kind of you to think of Sandra.

      A few years ago a good friend recommended I try a healing ceremony with a Native American healer in Wyoming. I was in a very negative and doubtful place. I was all about how much science and medicine I could cram into my body to get well. (Hyper-rational and emotionally shut off). Since then, I’ve tried to open myself up to radical new ideas, thanks in part to your input and the wise advice of my friend Barb. So…let me think about it. I am definitely open to it. Just not sure if many of my friends and family would be. I can’t thank you enough for the invitation. I am flattened today (another sleepless night with the pain and the prednisone buzzing), so let me get some rest and go from there.

      Thank you SO much.

      rebecca

      • Sandra Ahten said,

        Your family and friends don’t really have to do it. I bet I could get 3 or 4 or 5 people to do it…and you might be surprised at who would respond,just from a blog post or facebook message. Let us love on you a little! Take your time and no pressure though.

  6. Anne Bauer said,

    Damn, this looks like bad news, and I’m sorry to hear it. Yet, just as life can change negatively, it can change positively. Maybe there is something just around the corner for you that will effect a significant change. Until then, take it a minute or an hour at a time. Let me know how we can help.

    • Rebecca Stanfel said,

      Thanks, Anne. You are absolutely right. Radical positive changes are equally as possible negative ones. I’ve learned this lesson literally hundreds of times in my 8 years in Chronic Town. My only thought in getting kind of preachy (I just couldn’t help myself!) at the end of the post is that being open to those positive changes sometimes requires appreciating the lives we have. Whenever I get bad and scary health news I feel–so viscerally–how wonderful life is. And I want to kick myself for taking it for granted–for sweating the small stuff and not spending more time staring at the night sky with my jaw dropped in awe. I did that (the latter) last night. So, I guess sometimes the bad news breaks you open for the possibility of seeing more good and more beauty.

      I’m just deeply bummed I’m going to miss your book party tonight. I’m feeling too punky to venture out tonight. Just know that I am pleased for you and excited at the possibility of teaching/working together.

      Thanks for reading and taking the time to comment.

      rebecca

  7. Basil Rene said,

    So sorry to hear your news. I got some news myself last week that my sarcoisosis is once again active in the heart, and I too will be going back up on those high doses of prednisone, but not until I have an echocardiogram to see what my heart function is before I start. It is a frustrating disease for those with it chronically because we seem always to be making more steps back than we do forward. Yet still I continue to hold on to hope. Once we keep the hope alive in us, there is always something positive to look forward to. Fell better soon.

    • Rebecca Stanfel said,

      Thanks, Basil. And I am so sorry to hear about your problems with cardiac sarcoidosis and more prednisone.

      Do you have an AICD implanted yet?

      It took the doctors 6 years to go from monitoring my cardiac sarcoidosis and periodically bombing me with prednisone and freaking me out with dire predictions about heart attacks before they finally implanted the defibrillator last year. I have to tell you. It has been such a relief to have the device, instead of having to go through periodic heart carths, cardiac MRI, echos, stress echos, and pet scans. Of course, the sarcoid hasn’t yet infiltrated the heart muscle and has instead screwed up my heart’s electrical function, so the AICD was a good remedy for me.

      I’m rambling on here just because the specialist I see told me last year that the thinking on cardiac sarcoidosis has really changed in the past five years. When I was first diagnosed with cardiac sarcoidosis in 2004, everyone wanted to take a “wait and see and give her tons of prednisone” approach. They did 2 heart caths where they tried (in that clinical setting) to put me into ventricular tachycardia. They said if they couldn’t do this easily during the heart cath procedure it was unlikely I’d experience “sudden death” in the real world. However, the specialist I now see told me last year that this theory has basically been debunked and that now the common recommendation for anyone with cardiac sarcoidosis who experiences any troubling symptoms (like my passing out), should have an AICD implanted immediately.

      PLEASE know I am not trying to freak you out or undermine your doctor. I was just totally shocked when I learned this last year–and also a little angry at all the senseless and invasive testing I went through for nothing. I guess that’s just part of having a weird form of a weird disease. We get to be guinea pigs.

      I am passing all this along because I figure more information never hurts.

      Let me know if I can helpful in any way with the heart stuff. Hang in there on the prednisone and with the testing.

      Thanks so much for reading and taking the time to comment.

      rebecca

  8. Patricia said,

    I’m so, so sorry. Lighting a candle for you right now…

    • Rebecca Stanfel said,

      Thank you so much, Patricia.

      It means so much to know you are reading.

      rebecca

  9. Allyson said,

    Thanks, Becky, for giving me some positive words to remind me of the good in my life, even through the ordeal you’re experiencing.

  10. Rebecca Stanfel said,

    Thank YOU Allyson. I cannot tell you how wonderful it is to read your comments. It is so kind of you to keep up with all my recent posts and to keep me in your heart. I so appreciate all of your thoughtful comments–and your friendship.

    rebecca

  11. Dorothy said,

    Becky… what horrible news. My thoughts are with you and hope that this damn disease goes back into its box. You are a testament to perseverance in dealing with this terrible, but somewhat fiendishly clever opponent.

    • Rebecca Stanfel said,

      Thanks, Dorothy. It does feel like a fiendishly clever opponent right now. And it’s disheartening too that it seems like there aren’t many other pharmaceutical options out there for caging the beast. I appreciate your kind words and thoughts and for you reading and taking the time to comment.

      love,
      rebecca

  12. Marianne said,

    If you need anything, let me know. Like you need someone to buy you a pedicure. That always helps me.

    • Rebecca Stanfel said,

      Thanks, Marianne. Actually, Jay’s mom has bought me a pedicure. But I haven’t gotten out of my inertia to go and get it. Want to come along?

  13. Paul said,

    Rebecca

    Don’t know what to I say – the Pred monster. Still can it be worse than chemo? Are you still on the chemo drugs?.

    Hang in there
    Lots of hugs
    Paul

    • Rebecca Stanfel said,

      Hi Paul,

      Yes, I am still on two chemo drugs. One isn’t too bad. It’s a pill called CellCept. The Rituxan is the doozy. It’s frustrating that these weren’t enough to cage the sarcoid beast. I’m hoping the prednisone helps with this current episode of the sarcoid beast rattling its chains. But this is life for all of us in Chronic Town. We do better for a while and then we have bad patches, right? I just need to get through this now.

      Thanks for keeping up with my blog, staying in touch, and taking the time to comments.

      rebecca

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