Today I learned that I now have a third disease - lymphocytic colitis. This was discovered after perhaps the most painful and under-drugged colonoscopy in the history of gastric diagnostics. Lymphocytic colitis is linked to --- guess? Celiac Disease, as well as rheumatoid arthritis. According to the Mayo Clinic website, folks with Lymphocytic Colitis (wow, that's a hard one to type - from now on I'm calling it LC) has an increased amount of White Blood Cells in the lining of the colon. This can be caused by too many NSAIDs (motrin, asprin - my drugs from April - July to fight the PsA), as well as immune response. It is treated with a special diet... get this... no dairy, caffeine, alcohol, and raw fruits and vegetables.
I refuse to let this get me down. I'm making a pie and planning a trip to Germany in April. Blackberry and apple are cooked when they are in pie, and by the time April rolls around my Humira will have kicked in and will not yet have kicked out.
Why do these diseases hang out together like the Sharks from West Side Story? I'm tired of all this auto-immune graffiti...
Tuesday, October 14, 2008
Monday, October 13, 2008
I'm canceling everybody
I've decided that I'm in charge now. I kept looking for the right doctor. I wanted a savior who would walk me gently through the halls of pain and point me to the right exit. But so far, that person hasn't shown up in my life. My acupuncture, with my substitute acupuncturist, feels like a spa treatment with absolutely no staying power. My primary care doctor keeps making me cry. My old rheumatologist makes me wait 90 minutes for 9 minutes of his time. So I'm canceling all of them. I've decided that I'm in charge now. They work for me, I don't work for them.
I'm keeping my therapist, my new rheumatologist, and my physical therapist. My primary care doc is on notice (but she doesn't know it). My acupuncturist, bless her, is in the ICU with a brain bleed (please everyone reading this send her a good thought).
I'm also buying back my time. 4-5 appointments a week is exhausting. I've been doing this for three months with little progress, and way too many co-pays. I'm leaving it all to the humira, whenever that is...
I'm keeping my therapist, my new rheumatologist, and my physical therapist. My primary care doc is on notice (but she doesn't know it). My acupuncturist, bless her, is in the ICU with a brain bleed (please everyone reading this send her a good thought).
I'm also buying back my time. 4-5 appointments a week is exhausting. I've been doing this for three months with little progress, and way too many co-pays. I'm leaving it all to the humira, whenever that is...
Wednesday, October 8, 2008
"Not doing well"
Yesterday I saw a new Rheumatologist - she had wild hair and a very abrupt manner, but managed to be warm and empathetic in her haste, which I appreciated. She confirmed that I do have Psoriatic Arthritis, and informed me that in her eyes, I was not doing very well.
She also said that with the new biologic drug she wants me on (Humira) she expects that I can be pain free. She says our goal is to "be pain free, stiffness free, depression and fatigue free, doing whatever I want when I want", and she says this goal is very achievable.
I've been feeling so down ever since that appointment. She gave me such a mixed bag of news. Doing poorly, great prognosis, super drug, give myself a shot every other week for the rest of my life. Maybe every three weeks if I'm lucky.
Her confidence made me take this diagnosis much more seriously. The words "chronic" and "not doing well" resonate in my head. I am staggering. I am awed. I am numb. It was a hopeful meeting but hope has not yet reached me.
The PsA chat rooms are full of people like me - struggling, depressed, and in pain, and weighed down by our own misery. Immobile. Desperate. Taking one step at a time. This is no way to live. Humira should give me a light at the end of the tunnel. I just have to get my head around it, I suppose.
She also said that with the new biologic drug she wants me on (Humira) she expects that I can be pain free. She says our goal is to "be pain free, stiffness free, depression and fatigue free, doing whatever I want when I want", and she says this goal is very achievable.
I've been feeling so down ever since that appointment. She gave me such a mixed bag of news. Doing poorly, great prognosis, super drug, give myself a shot every other week for the rest of my life. Maybe every three weeks if I'm lucky.
Her confidence made me take this diagnosis much more seriously. The words "chronic" and "not doing well" resonate in my head. I am staggering. I am awed. I am numb. It was a hopeful meeting but hope has not yet reached me.
The PsA chat rooms are full of people like me - struggling, depressed, and in pain, and weighed down by our own misery. Immobile. Desperate. Taking one step at a time. This is no way to live. Humira should give me a light at the end of the tunnel. I just have to get my head around it, I suppose.
Thursday, October 2, 2008
The chair inventory
In my world, today is about pain. Every morning I wake up to a new day, a new set of symptoms. Some days I have a slight twinge in my knee when I hop in the shower, or notice a bit of stiffness as I scurry up the stairs to wake up the kids. That is a good day, a great day. I love the scurry. When I catch myself scurrying, I have my own little celebration.
Today is a bad day. I hurt EVERYWHERE. Ok, the tip of my nose does not hurt. But, both knees are burning, my R ankle is stiff, my back and hips ache, my shoulders hurt, and all the joints in my right arm and hand are in on the game. Just took some coedine - I'll talk about my new relationship with drugs later. I'm hopeful that in an hour the pain will be dulled a bit.
But, in an attempt to turn lemons into lemonade, I've decided to create a new pain measurement, called "the chair inventory".
The chair inventory is an inventory of pain levels when sitting in the chair. It's pretty easy. Here's how you do it. Sit in a chair - one that is comfortable, but I don't recommend squishy - squishy can bring out strange aches, surprisingly. Sit for a couple of minutes 'til you feel yourself settle. Then run through every joint in your body with your mind - search for pain when you are at this resting state.
Yesterday, I had soreness in my right knee. Done. A good day. I was scurrying.
Today, my chair inventory is: R ankle, both knees, both hips, spine, both shoulders, R elbow, R wrist. Knees are the worst.
I'm not sure yet what I'll be doin' with this pain inventory. I'm sure I'll find it useful some day.
more soon.
Today is a bad day. I hurt EVERYWHERE. Ok, the tip of my nose does not hurt. But, both knees are burning, my R ankle is stiff, my back and hips ache, my shoulders hurt, and all the joints in my right arm and hand are in on the game. Just took some coedine - I'll talk about my new relationship with drugs later. I'm hopeful that in an hour the pain will be dulled a bit.
But, in an attempt to turn lemons into lemonade, I've decided to create a new pain measurement, called "the chair inventory".
The chair inventory is an inventory of pain levels when sitting in the chair. It's pretty easy. Here's how you do it. Sit in a chair - one that is comfortable, but I don't recommend squishy - squishy can bring out strange aches, surprisingly. Sit for a couple of minutes 'til you feel yourself settle. Then run through every joint in your body with your mind - search for pain when you are at this resting state.
Yesterday, I had soreness in my right knee. Done. A good day. I was scurrying.
Today, my chair inventory is: R ankle, both knees, both hips, spine, both shoulders, R elbow, R wrist. Knees are the worst.
I'm not sure yet what I'll be doin' with this pain inventory. I'm sure I'll find it useful some day.
more soon.
Wednesday, October 1, 2008
Welcome
Hey.
Have you ever fallen into an open sewer hole? One day you're going about your life, packing school lunches and writing grant proposals, thinking about the news and the grocery list, and then... suddenly... you're in free-fall? You can't get a hold on anything to stop your descent, because the walls are clammy and wet (and your hands hurt like hell). You're in the dark, slipping, and calling out for someone to throw you a rope. But strangely, nobody knows what the rope looks like.
Welcome to my last few months.
I'm just like you. Well maybe I'm more liberal and more fond of Swedish Fish than you. But I'm just like you. It started with some pain in my knee 15 years ago. "Bursitis", I was told. "You'll always be able to predict any weather changes - you're lucky!" I was told. Gee. Two years ago I started noticing that those weather changes were happening every morning when I got out of bed, and every time I sat at my desk for too long. I was walking like my grandmother at the age of 39.
So, I did what most of you would have done... I took an Advil and went on with my busy life.
About a year ago I started noticing pain in at the base of my thumb. This pain avalanched into my wrist, my elbow, my shoulder. Soon my ankle wanted in and my good knee decided to party with my bad. And now I'm diagnosed with this disease... Psoriatic Arthritis. It seems that my years of scaly skin have something to do with this pain. I'm just starting this medical journey - and thought I'd take you with me.
Who are you? You're my friend. You're my husband. You're my mom. You're my psychologist who specializes in pain and in so many unexpected things more. You're a random person on the street with some embarrassing scaly skin and an ache in your ankle. You're the fourth doctor who doesn't listen, and you're one of the many who does.
This blog will be a place for me to document what I'm learning about this disease as I struggle through it. I hope it will help me. Maybe it will help others. Welcome.
Have you ever fallen into an open sewer hole? One day you're going about your life, packing school lunches and writing grant proposals, thinking about the news and the grocery list, and then... suddenly... you're in free-fall? You can't get a hold on anything to stop your descent, because the walls are clammy and wet (and your hands hurt like hell). You're in the dark, slipping, and calling out for someone to throw you a rope. But strangely, nobody knows what the rope looks like.
Welcome to my last few months.
I'm just like you. Well maybe I'm more liberal and more fond of Swedish Fish than you. But I'm just like you. It started with some pain in my knee 15 years ago. "Bursitis", I was told. "You'll always be able to predict any weather changes - you're lucky!" I was told. Gee. Two years ago I started noticing that those weather changes were happening every morning when I got out of bed, and every time I sat at my desk for too long. I was walking like my grandmother at the age of 39.
So, I did what most of you would have done... I took an Advil and went on with my busy life.
About a year ago I started noticing pain in at the base of my thumb. This pain avalanched into my wrist, my elbow, my shoulder. Soon my ankle wanted in and my good knee decided to party with my bad. And now I'm diagnosed with this disease... Psoriatic Arthritis. It seems that my years of scaly skin have something to do with this pain. I'm just starting this medical journey - and thought I'd take you with me.
Who are you? You're my friend. You're my husband. You're my mom. You're my psychologist who specializes in pain and in so many unexpected things more. You're a random person on the street with some embarrassing scaly skin and an ache in your ankle. You're the fourth doctor who doesn't listen, and you're one of the many who does.
This blog will be a place for me to document what I'm learning about this disease as I struggle through it. I hope it will help me. Maybe it will help others. Welcome.
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