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Today the limping is not so bad. I don’t feel it is noticeable to others. But the pain is there just the same. Today the pain is in the front of the left thigh radiating down past my knee and the side of my calf; pain level #4, tolerable, and able to ignore. I’ve been functioning in a daze. The migraine meds I took in the middle of the night still have hold of my brain. The headache was the worst I’ve had in a long time; Up to a pain level #8. But, now the temporal artery is only swollen and throbs when I walk in the heat. Doctors say that migraines run in families and that they start at an early age. They’re right about the first part. I was a bit disdainful of my relatives when they complained of migraines until I had my first at age thirty five.

I digress.... back to the thigh. Today the thigh, yesterday, lower back, day before that--I forget. Sounds like a hypochondriac. Right? I used to hate my body for being weak, for hurting me like this. I questioned my sanity, too. How real is all this pain? Why does it fluctuate, and change so? Could I just be imagining it? As a teenager, I only had to worry about the hereditary bone-bumps (benign tumors) all over my body, as being unsightly and nothing more. Time has taught me what scientific research has revealed: that muscles, ligaments and cartilage were not designed to wrap around these cauliflower-like growths without stress and strain, thereby resulting in a chronic condition very much like a cross between arthritis and fibromyalgia. Most of my family has inherited this condition, too. Mine’s a little different. One of my bone bumps became cancerous and I’ve had numerous surgeries over the years beginning in 1967, to try to keep it at bay. I haven’t had a recurrence since 1980. But, the damage is done. About one quarter of the pelvis has been removed. That includes the right pubic ramus and right ischium, all the way from the center to the hip joint with no prosthetic implant to hold things together. Doctors said I’d never walk again. What do they know? I forgot what they said, and walked, albeit with a limp.

But they never told me that one half of my pelvis would flap in the breeze like a hinge on a gate without a lock. They didn't tell me of the years of excruciating pain while the bones rubbed against each other until they wore down the cartilage and began to fuse together. They didn't tell me that the muscles on the side, without the support, would shrink and spasm and need constant stretching. They didn't tell me about a lot of things. I’ve had to find out for myself. Its not too obvious to most people, this gaping hole in my anatomy. Even doctors who don’t know my history, don’t really understand the long term effects. Occasionally, I’ll run into a really good Physical Therapist who documents all the bio-mechanical reasons for my difficulties. Then I produce those records to any new doctor I might have and get some understanding. I’ve made it a point over the years to survive without being drugged. The first couple years I lived in a not entirely pain free stupor. It wasn't worth it. I’d rather feel the pain, cope with it the best I can, and feel alive. What annoys me most are the judges of my life, well meaning friends, family and strangers, alike, not living inside my body, who, when I have made monumental effort to climb a flight of stairs without wincing, say something like: “You look like you do just fine to me. Maybe you’re over-reacting!” I never know whether to cry or strike out in rage. I usually do nothing. I’ve often thought if we were all born with a simple purple dot on the forehead that would intensify in color indicating increasing pain levels everyone would know exactly how everyone else was feeling.


  1. You might want to print out a handout, complete with the drawing of your pelvis and the paragraph below it, and when anyone makes one of those insensitive comments, just hand them one. Even though I know your story, seeing that drawing and reading about the "little things" the doctors never told you about, really made me think about your everyday reality. Sending you gentle hugs and a head massage!

    1. Great idea, Susan!!! I've carried a plastic pelvis keychain thingy for years and have shown it to others when explaining. But, you're right, that picture gives a much clearer picture. The plastic thingy has a spine and oftentimes those who don't have an inkling of anatomy focus on the spine and think the pelvis is a rib cage. Plus the part that is missing on me isn't missing on the plastic pelvis. It's just painted with red nail polish. Perhaps I will write a blog post about that too. Thank you for the suggestion. I will put those hugs and head massage on my list of things to collect from you someday. Let me know when you are coming to California! :)


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