This afternoon I finally felt well enough to do some laundry and change the bedsheets. With my old bed, I just had a metal frame and even though my back hurt, I never had problems with the sheets.
Somehow in the last year, the pain in my back has become so severe that I can barely lift the mattress in my newer bed. I always dreamed of having a bed with a real frame and now I’m kicking myself for asking for one.
You don’t realize how much of your daily life can be impacted by an injury or joint pain until you have to make a damn bed.
I only recently found out that about a decade ago, I had a compression fracture in my back. This fracture was never treated nor was it communicated to me. I only found out when I got a lung scan and checked the results in September.
When I relayed this to my geneticist that I am waiting to see, he suggested that I probably have osteoporosis. Not just because of the back pain and wedging in my spine, but because I have been living with MULTIPLE fractures for many years.
Compression fractures, if not treated right away, can result in some long-term and serious complications. It can affect your posture, your height and have a great impact on your day to day life.
After some time, the bone becomes more fragile and wedging of the vertebrae becomes more apparent.
It’s normal for people to experience joint degeneration as they age. Arthritis is common for people who had injuries or breaks earlier on in life. But to be almost 45 years old, with multiple fractures?
These injuries that I have are those that serious and pro athletes get. I don’t do sports. Never really have. And therefore, the only thing that makes sense is bone degeneration.
So, what can be done about it?
Early prevention and treatment is crucial
My injuries occurred because I have a rare bone and joint disorder that affects bone growth and healing. Bones become deformed over time. My doctors knew of this condition but often overlooked it and told me not to worry about it.
As I aged, the pain became worse. I complained about back pain from 2010 onwards. Yes, losing weight and exercising helped. But after a while, I had to stop hiking and doing all the things I loved because the pain became unbearable.
I’m still so angry but also relieved – it’s a confusing time in life
I’m angry at my former doctor for not listening to my requests for referrals. I’m angry at myself for not seeking a second opinion sooner. I’m angry at the Rheumatologist who diagnosed with me Fibromyalgia. Apparently this happens a lot with people like me. It’s a diagnosis they often give when they can’t figure out what’s wrong with you.
Instead of ordering more diagnostic tests, or an MRI, they just simply wave their hands and say: lose weight, exercise.
Well, it’s really hard to do that when you’re in constant daily pain.
Healing will take time. First, accept it.
Resistance training has helped me find some relief. I have seen physio therapists over the years and use an exercise ball daily. I also have rubber bands for my knees. I’ve tried braces and other supports. My joints till pop out and cause falls. There’s really nothing that can be done about it – so, I’m stuck like this. In a constant loop of pain, weight loss, weight gain, and suffering.
I’m mostly tired of people offering unsolicited advice
My last family doctor was convinced that my job was making me miserable. It was but so was the pain. She kept telling me to leave my desk job and go do something physical.
“Wait tables!” she said.
Like what? I was in my early 40’s at the time and there was no way I could work in a bar, let alone even wanting to be in a bar. And how do you tell someone with social anxiety that?
The more I learned about my illness, the angrier I get about all the people who though this was in my head. Like my former WCB worker. She was miserable and a bitch to deal with.
She was convinced I was lying about the pain, the migraines and the severe anxiety I got when she called. Literally. Hearing her voice sent me into panic attacks.
In reality, I should have retired or gone on disability years ago. Maybe I could have had some kind of quality life.
But instead, I worked as much as I could. Came home. Slept. Repeat.
I did that for years. And it was slowly killing me.
Onwards and upwards
I’m working hard to on self reflection and letting go of the hurt. I’m slowly forgiving myself and my family too. They don’t know what it’s like living with constant pain and worry like this.
The constant digs like, “some of us work during the day” when I ask if anyone has been to see dad. Or “you should drink more water” or “you need a lifestyle change.”
That’s all I’ve done this past year. I’ve changed my entire life in so many ways. They don’t even know about this blog and how many wonderful bloggers and other “zebras” I’ve met along the way.
And so, I know I’m posting a lot lately. But I just had to write this all out and get the words out there. The past month has been a struggle. I’m reaching out to local supports for more help.
What I am really grateful is the geneticist that I reached out to in September. He’s agreed to schedule a zoom call with me and start treating me ASAP. He’s sending me for another bone scan to check for other injuries.
All it took was ONE person to believe in me and one person to say NO. It’s not all in your head. You have real injuries here. There is something going on – and we’ll do something about it.
That’s all I have needed for the last ten years. I’m so grateful to have him now. And to everyone else who has dismissed this and said it’s in my head…all I have to say is:
You won’t be hearing from me much. Maybe never again.
Grieving the loss of friends and career
And to the woman that I worked with, Aimee, who told me I was a negative person for saying, “no” I can’t do that — I’m glad I’m not working with you anymore. You wanted me to do things that I wasn’t physically capable of doing. It wasn’t that I didn’t want to do them. It was that I legitimately, have a physical disability and CANNOT do them.
It’s because of people like you, I’ll never be able to work again. You have no idea how much that hurt. No idea at all.
And for the rest of you, thank you for being here and reading my drivel every day. But please… stop offering unsolicited advice. Thank you.
I’m working on it. I’ll heal. And eventually, I’ll let go.