Get a Grip. And Keep It.

May 9, 2012 at 12:49 pm (Uncategorized)

This is so hard. I am trying to hang onto what I can of a normal life while the chronic, auto-immune disease I’ve been fighting for over eight years lays claim to more of me.

It feels like I’ve done this a thousand times before. I lose ground to sarcoidosis when the disease flares up. I lose my ability to work, to read, and to drive. It feels like I lose a little more with each flare. I clutch at what I can, and try to cope with losing what I can’t keep a grip on with dignity and resilience. As mysteriously and capriciously as the flare started, it will ease. There is no pattern or rhythm to it. The disease takes over for as long as it wants, for as often as it wants. When it chooses to back off, I have a few weeks or, more rarely, a few months to rebuild my life. Cautiously at first, but then with resolution, I barge my way back into my old life. And then, without warning, the sarcoidosis roars back into my body. The cycle starts again.

I am in the worst part of the cycle—yet again. I can speculate about what rattled the disease’s chains, about what caused the sarcoidosis to break through the pharmaceutical padlocks and deadbolts I endure to keep it at bay. But my best guess at what caused this flare doesn’t really help me with the reality of it. And the reality feels pretty grim right now. The effects of the sarcoidosis in my nervous system are debilitating. I’ve had a nasty, often migraine-like headache, for the better part of the past three weeks. Along with the headache, like dour ladies-in-waiting accompanying a vicious queen, come vertigo, temporary episodes of vision loss, and—new to the royal family since last weekend—constant distortion of the vision in my left eye.

Since Saturday, everything I see with my left eye is cast with a grainy film, almost like the “snow” you’d see on televisions when stations used to go off the air late at night. I feel like I should be horrified at a new sign of the sarcoidosis’ encroachment, especially since it’s with something as fundamental as my eyesight. I’m sure a healthy dose of horrified is in me, but I can’t feel it just yet. It’s buried beneath mountains of exhaustion and garden-variety overwhelmed.

Along with the flare up of neurological problems, the disease has moved aggressively into the bones and soft tissue of my left foot. Sarcoidosis in your foot is less dramatic than sarcoidosis in your brain, but the new osteosarcoidosis is making it hard for me to rehab the bad ankle sprain I had in January.

I tell myself that I have been here before and that I’ve emerged from the worst part of the cycle to an easier place. But it doesn’t help to know I’ve been here before. Maybe to other people this grinding through from more sick to less sick to more sick is beginning to seem routinized. But it feels anything but routine to me. I have no faith that this too shall pass. Although the disease has backed off before, I have no guarantee that it will do so again. “What if this never ends?” is something I ask myself a lot, when I’m really hurting. What if the headache doesn’t loosen its grip? What if my vision doesn’t return? What if my bones fall apart? What if I can never drive again? What if I am a bedridden invalid for the rest of my son Andrew’s life? What if this is all that’s left for me?

My husband, Jay, zealously believes—or, at least, he tells me he does—that I will one day cycle out of disease into relative health and stay there, before getting better and better. He assures me that I will be well, that things are hard right now but they will get better. He doesn’t know how, just that they will.

When I’m two weeks into a bad headache and worried I’m going blind, I often want to crack open his bottomless optimism (along with his head) and make him see how ludicrous it is. Lucky for him, I happen to like his head. So I’ve decided to let him do all the hoping for both of us. I am putting all my energy into hanging on. I can’t trust there are better days ahead. But I can keep a grip on this one.


  1. Leanne Shirtliffe said,

    Sending hugs across the border. You are strong, even when your body is weak…this shows in your writing.

    May this cycle be short-lived, R.

  2. Marianne said,

    I can’t even imagine. I agree with Leanne, though. You are one of the strongest people I know even though your body isn’t.

  3. Nedra Chandler said,

    “Although I am tired, I will keep climbing until I can’t.”

    That’s a line from one of your spring entries that reading today’s entry brought me back to.

    Hey there Rebecca. I am thinking of you. And being inspired by you. It’s true! It’s tough to be so damned inspiring huh?! Well suck it up. That’s why we pay you the big bucks for Chronicville.

    In DC for a week, and tomorrow is Willa’s 13th birthday. I am both glad to be away with some nights to myself and sorry to miss a really important day at home.

    Well! We do what we can, go where we need to go, consider our options, make choices. Jeez! How does anyone pull this life thing off gracefully? Life is so damned messy and laden, yes, fraught, with so many choices every damned day! Thank you for sharing your reality with us and how things are. Gnight Rebecca. N

  4. Barbara Barnes said,

    What a courageous blog… to share when life is being such a sucky scary drag! Remember there are lots of us sending prayer.. so when you cannot keep a grip… let us help, lean on the strength in those many prayers. I love you!

  5. nan said,

    Oh Girlie – what a blog! I love to read your blogs – this one was heart aching. A very clear message came thru. I have been moved by your writing many, many times – a treasured group reveals your heart. Thanks for being so brave. I am a call away – nan

  6. Randy Bekkedahl said,

    Rebecca, Sorry this is so late but I am finishing up a bad period of my own. The Ankylosing Spondylitis, the Psoriasis, Psoriatic arthritis and the Sjgrens. all conspired to keep me down these past few weeks. I didn’t read my email, facebook, nothing. It just seemed so useless. And as a result, I missed your breathtaking post. It made my heart ache to read, but also made me proud of you and glad I found chronicville. I know the cycle of good/bad periods and I hate the start of bad periods, mostly because I have by that time gotten used to feeling good and when the first signs of a flare occur, I know exactly what is coming my way and I despair.

    I don’t know if I mentioned it before, but my athletic, supportive wife was just diagnosed with MS (multiple sclerosis) and Lupus. So now it is a family affair. She now knows what you and I have been dealing with, especially the fatigue, but also like you, some mornings she will wake up blind in the left eye (the MS is worse on her left side), or her arm won’t work or something equally scary. The medicine she takes keeps it from being permenant, at least that’s what the doctor tells her, but it still sucks.

    My thooughts are with you, keep writing my friend.

    Randy Bekkedahl

  7. Paul said,

    Rebbeca (WPWCTAF)

    Thinking of you Warrior Princess – Keep hanging in there

    I’ve been thinking about posting lyrics from a song I came across a couple of months ago. But I have hesitated as it seems negative now seems as good as any time. The band is a folk duo called April Maze and the song is called ‘Will I Ever’ seems to sum up life in Chronic Town (pretty sure theres a recording on youtube).

    Stuck in the middle with nothing in nowhere/the grass is always greener/and nothing’s ever fair/freedom is in the hope that lies under the ground/the only way is up/but I’m headed down/Will I ever leave this town?/My shoulder is a breakin my heart’s already broke/my back is always aching and I’m heading for the smoke/freedom is in the hope that lies under the ground/the only way is up/but I’m headed down/Will I ever leave this town?/As the clock gets older the hands will wilt away/my memory gets colder/there’s nothing left but to pray/freedom is in the hope that lies under the ground/the only way is up/but I’m headed down/Will I ever leave this town?

    Again Keep hanging in there


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