I was going to start chronologically when it came to updates but I think I’m going to start with the most recent and then work back logically from there. I’m starting with the most recent because it’s the most painful and biggest obstacle right now.

For several years, I have had a high white blood cell count and a high platelet count. Every doctor has dismissed it as not relevant or useful or meaningful. My current GP sees it for what it is, a symptom of something, and sent me off to a hematologist. My great GP reminded me that she did not think I had anything serious or life threatening but did give me a heads up that she was sending me to a cancer center. I appreciated the warning although I admit my blood pressure was STILL through the roof when I got there.

So I was tested for various autoimmune diseases and simple anemia, as well as leukemia. Eveything was negative. I was tested for a proliferation disorder (where bone marrow just makes too many of certain cells), also negative. So the next test needed was a bone marrow biopsy.

This is sound logic and I appreciate that simpler blood tests were run first. However, I have a disease that makes me hypersensitive to pain and prevents me from recovering from trauma and stress in a timely manner. I expressed my concerns and, to be honest, I don’t think these people have ever worked with a fibro or cfs patient before. The assured me that lidocaine would be sufficient and absolutely would not sedate me, despite having read that sedation is not uncommon these days. The nurse practicioner was understanding and offered me morphine by mouth beforehand, because that was the best she could do.

So I went in for this procedure on September 3. I will spare you the details because they are upsetting but the gist of it is this: the pain was as close to unbearable as I ever want to get. I felt everything they did. I was in tears and I suspect I screamed. And on top of it sycking in general, it took 3 tries to get the bone sample out of my pelvis.

In hindsight, there wasn’t a lot of sympathic gestures. There wasn’t even a wheelchair offered to get us to the valet parking (walking was so very painful, and still is). They did not know I was allergic to latex until I got my husband to ask about the bandage they were putting on after. They were quick to offer benadryl. Pls dont sue us. They did bring orange juice when they found out I hadn’t yet eaten and the pain was making me sick to my stomach.

I think they were surprised at how I responded. I know I was. You know how you get all stressed about certain things and they turn out fine? Yeah… This was the worst experience i’ve ever had. And I didn’t think it’d be all that bad and believed most of my stress was fear of the unknown.

Since that day, I’ve been mostly in bed. I’ve taken a lot of naps and sat on the (uncomfortable and temporary) couch a little. I’ve been regularly taking vicodin that I use for my back. And that barely touches the pain.

Today is the first day I feel I can say “the pain has decreased,” but that puts it at an 8 out of 10 when it was 10 (or 100, it doesn’t matter) before. However, I’m still so tired. Like coping with pain is exhausting. And if only I could sleep enough, maybe it will stop hurting.

I’ve been useless at home, which is guilt-inducing. I also keep having hospital flashbacks (which are not uncommon for me but it’s never this severe). I jolt physically and remember the pain no matter what I’m doing when the memory is triggered (it’s often just feeling the current pain that makes me relive the experience). They give me nightmares. I hear people often saying that we forget pain. But I never do. I still remember how I felt when I broke my leg when I was 7. And how it felt to walk through 3 airports, return a rental car, and drive myself to a clinic with a broken foot. I remember this pain in my pelvis like it just happened.

I guess technically it did just happen.

I have a follow up appointment to go over the biopsy results on the 16th. I’ll let you know what happens.


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2 Responses to “Hematology”

  1. Terry Says:

    When I have Fibro flares I’m in bed all the time. The best thing I’ve found is my ChiliPad – a mattress pad that lets you cool down (or heat up) your bed, mine lets me set any temperature between 46 and 118 degrees. It helps with pain and I have been getting more sleep because I’m not woken up by pain as easily. Plus it’s so luxurious to be able to have any temperature you want in bed. Hope this helps!

    • fibrofatty Says:

      It sounds lovely :)

      Perhaps other readers might be interested in checking out your product.

      I’m not sure it’s something that would work for me personally, as I share a bed with a human furnace, but staying warm is definitely something that helps my pain levels, since being cold stiffens me up something fierce.

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