Tuesday, July 11, 2006

If I Didn't have Bad Luck, I'd Have No Luck At All...

This is what my newest Dr, a Rheumatologist said to me, before giving me my diagnosis. Ankylosing Spondylitis. Basically arthritis of the lower spine. Let me just run y'all through a time line here, because I'm really not a moaner, but I'm hoping this might help to put whatever is happening in your life into better perspective.

7.5.04- Marry the man of my dreams

7.12.04 Get sick on honeymoon. Think it's a stomach bug or the exotic food

9.04 Diagnosed with Crohn's disease after CAT scan and colonoscopy biopsy

11.26.04 Start Prednisone. Get Moon face, gain insane weight, going from a size 4 to a size 20 in less than three months. A third of my hair falls out, but I get facial hair to compensate. I get stomach ulcers, and take medication to sleep and stop shaking. I take 16 anti-inflammatories, plus the steroids and related meds, adding up to over 40 pills a day.

03.07.05 Fall and crush my right ankle. Have to keep it elevated for 4 months. Trying to hobble around on crutches with 80 pounds of extra weight is no one's idea of a good time.

5.05 Start to taper off the prednisone

7.05 totally off prednisone, and dropping weight very quickly. My first anniversary!

8.6.05 My husband is hit by an elderly driver, has many broken bones but is expected to make a full recovery

8.8.05 My husband dies due to complications from his injuries. I am in a state of total shock and grief and my amazing family and friends gather round me and pull me through it.

1.06 I begin to feel sick again. Doesn't seem like Crohn's, no tummy problems, but after months of exhaustive testing it turns out it is a flare. Only this time it's joints and exhaustion. Begin remicade treatments.

6.06 Have extensive latent food allergy and other testing done, ruling out the main foods I can comfortably eat. Also find out I have the Epstein Barr Virus.

6.06 Learn that one of the people in my life I am closest to has cancer.

7.06 Finally see the rheumatologist specialist and learn I also have a disease called
Ankylosing Spondylitis.

So there we are. Can it get worse? Of course it can. I have a lot of people who I love, so very much, and they're tremendously supportive, and unbelievably wonderful. I am so lucky to be surrounded by so much love. I can't work, and I'm stir crazy. The worst is when I have a really good day. On a really good day I have 5 or 6 really productive hours in a day. But I never know when one of these days might be, and they're not very common. And it's hard. I'm in pain. All the time. I try very hard to hide the amount of pain I'm in to my loved ones, because I know it makes them worry for me even more. I miss my husband in ways I cannot even begin to describe, and I know I always will. But I'm trying my best to move forward with my life, because I have to.

But it could be worse. I could have no one who loves me. I could have no one in my life to love. I could be much more sick than I am. The prognosis for my loved one with cancer could be worse. It could always be worse. And I laugh about these things as much as I can.

So if you're having a bad day, a bad week, or like me, a bad year- remember... it could always be worse.


Anonymous Kim said...

Thanks for that reminder.

I hope the best for you!

7:40 PM  

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