Everyone I saw knew there was a problem, they just couldn't figure out why. I'm a why person. I want to know why something works or doesn't work. I want causes. I want answers. No one could give me those answers.
I got a lot of assumptions. I also got a lot treatments based on those assumptions. Sometimes they were like a bandage, giving me ability to move for a little while but not fixing the problem; sometimes they made it much worse leaving me unable to move for days at a time. A surgery was thrown at me as a fix. But it didn't fix it. Medications, therapies, specialists, injections, exercises, tests, scans, enough radiation to literally make my bodily fluids glow...Have you ever had your pee or poo glow? It's very interesting. Alarming but interesting.
It became our mission to find my Dr. House because I was obviously just a walking mystery.
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| Source |
Being the stubborn Eddi that I am, I wasn't going to take "I don't know" for a final answer & I wasn't accepting 1 specialist's prediction that I'd be in a wheelchair within 5 years (3 years ago). If I was going to be in a wheelchair, I was going into it fighting. And I wasn't going to go into it not knowing what sent me there.
Fighting is painful. It's exhausting. It's physically, emotionally, mentally draining.
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| Eddi: Drained Version |
I don't think I'll ever forget the day I got that fateful call from my doctor. He was sending me to a specialist that a select group of people get referred to, simply because this doctor does not take just anyone; he enjoys the mysterious cases that are stumping other physicians. Not only that, but he figures all of them out. I asked my doctor's nurse, who I love so very much, what kind of doctor he is. Before telling me his official title, she said, "Can I just say he's a Doctor of Amazing? You are so lucky to be sent there because he will be the one that has the answer you've waited so long to hear. He is your Dr. House."
After weeks of waiting for my appointment, I went on my nervous way to this new guy. When I got there I was put into the Dr. Amazing Clothing Line, complete with shorts. Yay! I pranced down the halls in that outfit, waving at the nurses and doing spins for other patients. The laughs of appreciation for my modeling abilities were wonderful to hear. So many appreciative people! I just wish I had been better prepared for the clothing they put me in, because I could have worn accessories that complimented the outfit better. But, hey, it was a learning experience. I know which purse, understated jewelry, and shoes to wear to my next appointment.
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| "I can totally rock this." |
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| "Ooh, shorts!" |
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| "Hope he's a better doctor than fashion designer." |
O. M. G. Forget his official title, whatever letters are after his name, he does have a doctorate in Amazing. He's apparently also studied at the School of Humility because he blushed when I told him that he should add Doctor of Amazing to his credentials.
Less than an hour with him & he knew exactly what was wrong & how to treat it. The news that I had to accept was that it will never be cured. The news I have chosen to focus on for the last 6 weeks since he told me was that, with aggressive treatment & a lot of work on my part, it can improve. I won't live in pain, unable to function as the person I want to be, being disabled for my entire life. I'll have limitations, but not as many as I've had for the last almost 4 years; it will get better.
The 3 years of fighting the diagnoses based on guesses were well worth my effort.
Official diagnosis: my SI joint is effed up. And angry. I don't know which came first: angry SI joint or effed up SI joint, but it's both for sure. It's so angry that it has decided to spread its misery to other parts of my body. Angry body parts are a bitch, I tell ya.
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| The sacrum is the end of the spine, the ilium are where the hips are.Source |
The muscles that support that joint are stressed, in part, from a trauma that occurred over 10 years ago. What ticks...that word is not strong enough...me off is that this is something someone else did to me & I get to live with it. They don't have to live with it. When I get that thought, I remind myself that getting angry at this person will only stall my healing & cause a flare-up that I don't want or need.
There are other factors that play a role: hyper-flexibility in my joints prevent proper support, stress causes already angry muscles to become too tight, 2 broken bones in my pelvis, 7 pregnancies in 6 years, & then 6 surgeries in 3 years all contribute to not recovering from that trauma.
While talking to Dr. Amazing, he told me he would be sending me to physical therapy. When he said the name of the physical therapist that is the best in her field to deal with this, I said, "Awesome! That's a friend of mine." I was overjoyed. What could be better than having your friend on your health care team, rooting you along, having a significant role in bringing you back to life?
After my time with Dr. Amazing, I told his nurse, "I found my Dr. House." As I cried like a baby, she handed me a Kleenex, smiled, & said that was a common reaction that she got from his patients; although it was the first time he was called Dr. House.
| Not my doctor & not my heart. |
I thought it'd be great fun to have a friend be my physical therapist. And...whoohoo!...it is. While she's creating all sorts of pain in my body, we talk about all the things friends talk about: annoying husbands, annoying kids, annoying things in our lives. Big milestones & achievements with our kids, our hobbies, how much we are over winter. Having things to talk to her about gives me something to focus on instead of the pain which means that I don't punch her. We both appreciate that. And having a connection with her before I went in meant that I didn't have that awkward time of getting to know the person who is manipulating my body into positions it doesn't want to go in.
Some of the muscles contributing to my evil back issue, muscles that need to be repaired & worked on continually, are only reachable internally. There is no other way to get to them. There is no other way to create function in other areas without getting to them. Internally reaching muscles next to my hips.
Internally.
I love Mrs. PT. I love what she has done to improve my health and my quality of life over the last 6 weeks. I think she's just as amazing as Dr. Amazing & I adore her. But, seriously, ain't nothin' more awkward than a friend donning gloves & lube &...
Awkward, yo.
Last week I had the best week I've had in 2 years. The last 2 years have been filled with constant, unrelenting, excruciating pain. After just 5 weeks of working with Ms. PT, my pain was lowered to 50% of what it had consistently been for 2 years. I was able to be active for hours at a time without crashing & burning when my body protested from me ignoring the increasing pain until it couldn't be ignored any longer. There was still pain but it was manageable.
It was freeing.
I've been documenting everything about my journey with Evil Back. These are just a few pictures from last week, starting with the first day of feeling so good.
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| Day 1: feeling like I got my life back. |
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| First day I felt like me again. |
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| Day 2: I felt like I'd been given a gift. I never dreamed I'd get 2 days in a row like this. |
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| I can't believe I get to do wonderful things like walk pain-free for 2 days in a row! |
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| 3 whole days in a row of feeling human! |
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| Celebrating how great I feel with one of my biggest fans. |
All the traveling to appointments, all the demands of physical therapy, all the exercises at home, all the struggles, all the pain, all the tears, all the awkwardness of working on internal muscles around my hips...it is all worth it. So very worth it.
There will be painful flare-ups (I'm in the middle of 1 now) but they are mentally easier to deal with when it's not a constant, non-ignorable presence dictating how I live my life. Rather than my pain controlling my life, I'm once again in control & get to decide what I do & when I do them. I will always have some limitations, but they're a heck of a lot easier to deal with when I can work around them instead of being out of commission due to them.
I can't wait to see what the next 6 weeks & more have in store for me.
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