Bigger isn’t always better in life.
I’m not talking about weight size or the size of your bank balance or home, I’m talking about bigger bones.
If you research bone disease on “Dr Google” you’ll find copious amounts of information about Osteoporosis, low bone density & the importance of having good healthy bones.
Try researching high bone density & there is such limited information.
There is a small amount of information on rare bone diseases, like Osteopetrosis that causes extreme high bone density & low bone turnover but not a great deal. I guess the word “rare” is the reason for that. So much research needs to be done in this area.
My case is being used for that research purpose & I pray that my story will eventually help others in the future who find themselves walking this unknown path.
My disease is closely linked to Osteopetrosis but it is too severe for the benign adult version & my bones are doing things that my medical team have never seen or heard of before.
While being a Leader has always been a big part of my personal & working life, being a disease pioneer is however not the best position to be in when you need to find a way to halt the progression of the disease now.
So what is considered healthy bone density? A Bone Density Scan provides you with a T Score which lets you know if you are in the healthy bone density range or if you require treatment or further investigation.
The criteria of the World Health Organization is: Normal is a T–score of −1.0 or higher. Osteopenia is defined as between −1.0 and −2.5. Osteoporosis is defined as −2.5 or lower, meaning a bone density that is two and a half standard deviations below the mean of a 30-year-old man/woman.
I had a follow-up Bone Density Scan last week to see how my bone disease is progressing. We know the nature of my bone disease is causing my bones to be excessively dense, it’s affecting my bone marrow, muscles & it causes my bones to break & not heal. It’s pattern is the complete opposite to the well known Osteoporosis. It is a rare disease. It is a conundrum to my medical team. It has no treatment & no cure. We hope & pray that it will at least stop progressing but my physical disability & pain levels seem to be increasing on a daily basis.
So when my husband & I headed off to the xray department last week, we did so with a little trepidation of what those results would be.
It’s not great news. My spinal bone density from L2 to L 4 has increased significantly since my 2014 scan. Normal range is -1.1 to +2.5. Remember, anything under -1.1 is Osteoporosis or Osteopenia. Anything higher than +2.5 is a rare bone disease or possible cancer. I had a full cancer review last year & the Oncologist was comfortable that my bone disease was mimicking a malignant pattern.
So my score card was I guess at least impressive, if you’re looking for high scores, but in reality it is a good example of bigger not being better:
My T Score is +4.34
My L3 disc is sitting at + 5.40. 😯
They couldn’t scan my femurs because of the rods but that doesn’t matter, they scanned my spine from L2 to L4 & my wrist. Two areas need to be scanned. The spine however gives all the info my Specialists need.
I see my Endocrinologist for full review on 12th September unless she contacts me earlier.
We have no idea what next steps are or even if there are any. We imagine my medical team will be scratching their heads. We’re not that thrilled ourselves!😢
The Radiographer couldn’t believe what she was seeing but she, like so many others who treat me, was fascinated by my case & I enjoyed chatting with her. She apparently works closely with my Endocrinologist on difficult cases which I didn’t know so that was handy!!
As a new week starts & I look ahead to what the week holds, I know it will be full of pain. I know I will have to plan carefully every movement, every activity around the home. I thankfully have no appointments to try & attend. I’d like to get out to a cafe with my husband at some point & pretend I’m semi normal for 30 minutes but I can’t guarantee that’s even possible.
Nothing changed last week with the results but everything changed. My circumstances are the same but they are different.
My symptoms tell me daily that my disease is progressing & I live happily enough with it but seeing the facts of that reality on paper did change things slightly for my husband & I.
Silly that numbers on a piece of paper can make something even more real but they did.
My feet fracture & re-fracture regularly & my broken femurs grate bone on bone with the slightest movement. My jaw bone pain makes talking difficult and painful & my spine looks like it now has a compression fracture on top of countless disc herniations.
So it’s not like I wasn’t aware that things weren’t great but I was holding out hope that maybe the results would be stable…not bigger.
Bigger is not always better.
What hasn’t changed is my resolve to enjoy the simple things in life at home with my husband.
What hasn’t changed is my faith in God & the knowledge that He is with me every step of the way, encouraging me to look to Him for strength & peace & not dwell on the things that I can’t change.
What hasn’t changed is my desire to reach out to others living with complex diseases to provide support & understanding.
I love my forum, Medical Musings with Friends . It’s a safe place to connect with others living with chronic & complex diseases, who truly understand the constant challenges. The 1370 plus members from around the world are amazing. They inspire me daily & give me a wonderful purpose for which I am so grateful.
My big bones might not be great & weigh me down physically but my big ideas of living a fulfilling life despite disease are well worth growing 😊