And now, in medical news…..

Ah, yes, it’s been a while since we’ve had a medical update.  But first, let’s catch up the new people on where we are in my medical saga.  It all started in the mid ’80s when I began feeling pain whenever I moved.  Then the tiredness slowly crept in.  I began seeing a rheumatologist around 1988.  A few years later, I had a diagnosis of fibromyalgia.  Fast forward to the last couple of years or so.  I’ve always been anemic.  Now I’m very anemic.  It’s not iron deficiency.  It’s nothing similar to sickle cell anemia.  I can take heavy-duty doses of iron and I’m still very anemic.  I also have pain now that’s 5 times worse than the fibro and getting more and more painful every day.  I take Cymbalta for the fibro and Areva for what I now fondly refer to as “the mystery disease.”  I’ve had 3 biopsies on my head; more CT scans, MRIs, ultrasounds, bone scans, and x-rays than I can count; and then there’s all the blood draws to monitor the numbers and attempt to figure out what in the heck is going on.

I give blood to my current rheumatologist every 2 months because the Areva can do some real damage to my liver if it isn’t monitored.  We also check the SED rate and the C-reactive Protein levels.  I don’t know what the CRP is all about and I don’t feel like checking it out even though I should.  The SED rate is the rate at which red blood cells sink in a liquid solution and is a very good indicator of an auto immune and/or arthritic condition.  The normal SED rate for women is 30 or below, ideally 20.  My SED rate likes to hang out around 124.  The lowest it has been in the last 2 years is 65.  According to my primary care doctor, my local rheumatologist, the rheumatologist at the Cleveland Clinic, and my hematologist, with numbers like that I should be so crippled that I’m either bedfast or in a wheelchair.  I’m neither.  What I am is exhausted all the time, I have little energy, and I’m in some rip-roaring pain from head to toe every darn day of my life.

I have what I call “normal pain days” and “bad pain days.”  On a normal pain day, I can pretty much not think about it.  I’ll still be dead tired and half-lifeless, but I function fairly well.  On a bad pain day, I just want to lie in bed in the fetal position.  I get really cranky.  I hurt like hell and I can feel every little node of pain.  My muscles, joints, tendons, and ligaments feel like they’re on fire and being stuck with ice picks.  It hurts to inhale; it hurts to exhale.  Some days I can’t close my hands all the way.  I can no longer turn my head as far to the right as I used to.  It’s very painful trying to put my hands behind my back.  I can’t sleep on one side of my body for very long because it starts hurting too much, so I have to turn over to the other side.  There are days when I think, “It’s okay, I can handle this.”  But there are also days like today, a bad pain day, when I think, “I’m never going to get better.  I’m going to be like this the rest of my life.  I can’t do this anymore.”  So I have a pity party, feel sorry for myself, cry like a baby, and stuff myself with food that isn’t healthy for me but tastes oh so good.  The next day, I pick myself up and I’m ready to do battle again because I refuse to let the mystery disease win.  If I ever once believe what the numbers tell me, I will never get up again.  So I keep going and going and going.  I’m just stubborn that way.  And lest you all think that my life sucks, it really doesn’t.  I just went to Paris, for pete’s sake!  France.  Not Kentucky.  I work full time.  I go to movies, plays, concerts, my nieces and nephews sports games, out to eat.  I do pretty much what I want to do.  I just have to make sure I take my meds, get enough rest, and don’t overdo.

Anyhow, the latest update is that I gave up several more tubes of blood the Friday before I left for Paris.  We’re now up to the magic number of 125 tubes.  The results showed the usual:  the SED rate is still high, my liver is still fine, I’m still in a boatload of pain, and all is right with the world.  Everything is what is now “normal” for me.  I give blood again the last week in October.

The last thing to do here is to introduce all you newbies to my medical team.  My primary care physician is Dr. Meany.  She is called Dr. Meany because she told me to lose weight.  Ha-ha!  However, she is a wonderful person, a fabulous doctor, I adore her and will always see her until she retires or I die, whichever comes first.  My hematologist is Dr. Dracula.  He’s been known to take up to 8 tubes of blood at one time.  I think he sells it to vampires on the black market.  My rheumatologist is Dr. OhMyAchyBody.  Every time I see her, she checks my mobility and then I have bad pain days for at least 2 days in a row.  But she is an outstanding doctor and always tries to be as gentle with me as she can.  All 3 of my doctors also make me laugh a lot and that’s very important.  Like when Dr. Meany told me to lose weight, I laughed my head off!  🙂

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7 Comments (+add yours?)

  1. Chiaki
    Sep 20, 2013 @ 00:48:40

    I admire your tenacity Debby. I really enjoy your blogs. They are so personal, but relatable. The previous blog really hit home. Keep writing!

    Reply

  2. Sheri
    Sep 22, 2013 @ 17:34:06

    With all the medical research you’d think they could help you more! You are so positive and that is wonderful for your health. Thanks for sharing, you are wonderful!!

    Reply

  3. Sara
    Sep 22, 2013 @ 19:05:52

    It sucks to be you (channeling Avenue Q here…lol) but the way you handle what life throws at you is beyond amazing. I always knew you were a strong woman but you passed strong miles ago, my friend! Keep on keepin’ on!

    Reply

  4. Anita Abner
    Sep 22, 2013 @ 19:39:16

    I know about the pain. It is bad but we can handle it with God’s help! I will be waiting with baited breath for the Paris blog!

    Reply

  5. Donna Sanders
    Sep 23, 2013 @ 11:52:17

    Your positive outlook and humor are inspiring ..Most folks in your shoes would curl and and cry. I have similar joint pain, but mine is from a vitamin D deficit. I just keep on moving, have good and bad days, and try not to let it slow me down..As always I really enjoy reading what you write!! Till next time 🙂

    Reply

  6. Carolyn Roeper
    Sep 25, 2013 @ 21:12:02

    My dear friend, you are one of the strongest and bravest women I know. I admire your courage to face each day with the pain, knowing that it’s a never ending battle. You are always in my thoughts and prayers and forever in my heart. I love you dearly.

    Reply

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