Bigger Isn’t Always Better In Life

~ Sam

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 and the importance of having good healthy bones.

Try researching high bone density and there is such limited information.

Walking An Unknown Path

There is a small amount of information on rare bone diseases, like Osteopetrosis that causes extreme high bone density and 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 and 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 the rare disease Osteopetrosis, but it is too severe for the benign adult version and 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 and 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.

What Does Bone Density Actually Mean?

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 recently had a follow-up Bone Density Scan, 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 in a malignant pattern, my muscles are atrophised and it causes my bones to break and 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 and no cure. We hope and pray that it will at least stop progressing but my physical disability and pain levels are increasing on a daily basis and I am now being treated as a palliative patient.

So when my husband and I headed off to the xray department on the day of my bone density scan, we did so with a little trepidation of what those results would be.

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It’s Wasn’t Great News.

My spinal bone density from L2 to L 4 had 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 in 2016 and 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 and my wrist. Two areas need to be scanned. The spine however gives all the information my Specialists need.

My medical team are scratching their heads.

The Radiographer couldn’t believe what she was seeing but she, like so many others who treat me, was fascinated by my case and I enjoyed chatting with her. She apparently works closely with my Endocrinologist on difficult cases which I didn’t know so that was handy!!

Nothing Changed But Everything Changed!

As a new week stared and I looked ahead to what the week held, I knew it would be full of pain. I knew I would  have to plan carefully every movement, every activity around the home.

Nothing changed the week of the scan. The results were expected but everything changed. My circumstances were the same but they were different.

My symptoms tell me daily that my disease is progressing and I live happily enough with it but seeing the facts of that reality on paper…….it did change things slightly for my husband and I.

Silly that numbers on a piece of paper can make something even more real but they did.

My feet fracture and re-fracture regularly and my broken femurs grate bone on bone with the slightest movement. My jaw bone pain makes talking difficult and painful and my spine has countless disc herniations impacting nerve roots. More recently I have been diagnosed with severe central and lateral spinal stenosis at L4/L5 and L5/S1 with bone spurs compressing the spinal cord. The pain is disabling and excruciating and recent spinal surgery has fixed one area but made others worse.

So it’s not like I wasn’t aware 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

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 and the knowledge that He is with me every step of the way. God encourages me to look to Him for strength and peace and 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 and understanding.

I love my forum, Medical Musings with Friends . It’s a safe place to connect with others living with chronic and complex diseases, who truly understand the constant challenges. The 1600 plus members from around the world are amazing. They inspire me daily and give me a wonderful purpose for which I am so grateful.

My big bones might not be great and weigh me down physically but my big ideas of living a fulfilling life of faith, despite disease, are well worth growing.

Take care

Sam xx

If you’re looking for genuine support, care, understanding & friendship, you are so welcome to join my closed Facebook support forum, Medical Musings with Friends . It’s a safe place to connect with others living with chronic & complex diseases, who truly understand the daily challenges. A warm welcome awaits.

I’m a regular Contributor at “The Mighty”. You can check out my published articles at My Author Page

I also write @ Blogs by Christian Women

I’m a member of  the Chronic Illness Bloggers Network and the  Grace Girls Facebook Group

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23 thoughts on “Bigger Isn’t Always Better In Life”

  1. Sam you are such a testament to your strong faith. You teach the rest of us how to handle our pain with hope and a sweet spirit as you do. I will continue to pray for healing and less pain for you and feel comfortable in knowing you have a loving man at your side. Sending you warm hugs!❤

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    1. Thank you so much for your beautiful comment. Your loving words have encouraged me enormously today. Such perfect timing. God bless xx 💗

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  3. I’m sorry it wasn’t better news but you are doing fantastically when it comes to raising awareness (I have osteopenia and before your blog knew nothing of higher bone density) and in cultivating a positive attitude. You’re right, enjoying the smaller things and keeping your faith and hope alive are so important, though it’s easier said than done. You rock, and you are an inspiration. Sending hugs your way!
    Caz x

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      1. No no, I didn’t mean to make it about me – I simply meant I knew the opposite side of things (thinning) rather than what you’re going through, so I think it’s great you’re raising awareness of the lesser known problems with ‘bigger not always being better’. Take care, Sam 🙂 xx

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  4. Lol…you were definitely not making it about you in any way. I knew that 😊💗I loved your comment because not many people clearly understand the different types of bone diseases. You were nicely highlighting that differentiation so your comment was perfect. Thank you xx

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  6. Your faith despite your circumstances is inspiring! Thank you for sharing your story. May God make His presence known to you in incredible ways as you walk this road with Him.

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  7. Thank you for sharing your testimony. I can’t imagine what your experience has been like, but I appreciate you sharing your story and how it has grown your faith. Thanks for sharing your perspective and insights!

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  8. Hi Sam, I found your blog while researching extremely high bone density. You’re the only person I’ve found who has this! My doctors have been stumped by my extremely high bone density since 2014, but they continue to give me the brush off and tell me its fine. It’s clearly not! I haven’t had any major fractures, unlike you. But I have severe RA and OA all over the place. My femoral neck T-score is 4.0 and lumbar spine T-score is 7.0! It has been checked and rechecked, because they told me that was impossible, but it is correct. My endocrinologist told me I am literally one in a million, but also that she has no idea what to do about it, or what it is. I mentioned osteopetrosis to her, after reading your blog, and she said ‘its probably that’ but she doesn’t know what to do next.
    Do you mind my asking which specialties are involved in your medical care, and who diagnosed you? I’m so glad to have found your blog, thank you for writing about this. I’m sorry you have gone through so much, but you are an inspiration and huge help to me. All the very best to you.
    Neen

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    1. Oh Neen, I’m so sorry you have this too! You are honestly the first person I’ve come across whose case is so similar to mine. My Endocrinologist will be very interested to hear there is someone else.
      Your scores are way too high. We discovered mine were high about 4 months prior to my major femur fracture. I had horrible thigh pain 4 weeks prior to the break. I now know what sort of pain to look out for which is bone pain rather than RA pain. It’s what I call a mechanical pain. The limb or foot or pelvis just won’t move as if something is pushing against it.
      My main specialists are my Endocrinologist and my Orthopeadic Surgeon. There is no treatment or cure unfortunately so there is little your Endocrinologist can do. Mine does check my bone turnover markers via blood test every 6 months. I have extremely low bone turnover as well as high bone density and that’s what’s causing my constant fractures.
      Make sure your Endocrinologist checks that as the combination of both results is helpful in predicting a possible fracture could be imminent.
      My Orthopaedic Surgeon is fantastic and he has picked stress fractures in my right femur that radiologists missed. He was prepared to insert a rod in that leg as well to prevent a major break like I had in my left femur.

      Has your Endocrinologist ordered a full skeletal study. That helps see what kind of bone disease activity might be happening. A bone scan is useful too.
      My Endocrinologist is not comfortable calling my disease Osteopetrosis as it’s a bit severe for the adult form. My Specialist are saying it is a rare genetic bone disease with extremely low bone turnover/high bone density.
      I think it’s really interesting that you also have RA & OA like I do.
      There has to be a link with it all somewhere.
      If you would like to privately chat please don’t hesitate to email me @ medicalmusings@bigpond.com
      I’d love to keep in touch xx

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      1. Sam, thank you! I am going to email you in the next day or two. Thanks for all the info you’ve given, maybe we’re two in a million? I totally agree, there has to be a link, and we have a lot in common. I’d love to talk more, share experiences. I too read that the adult form of osteopetrosis was mild, but I don’t understand. I get aching bones…my rheum questioned me all the time asking if it was joint pain, i said no…its in the middle of my leg bone..femur. She said ‘then it must be muscle pain’ but its not…it feels jsut as you describe, like something is pushing against it, preventing it from moving. I’m not sure if I’ve ever had my bone turnover markers checked, but I will pursue that. Thank you again. I will email you! thanks 🙂

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  9. I don’t like the sound of that pain you describe at all. Three weeks before my femur snapped we thought it was muscle pain. If you could get an MRI on your femur it would be well worth it. It will show a stress fracture that won’t be picked up any other way.
    Looking forward to chatting via email. Take care xx

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  10. I am speechless, not sure what to say. But i admire your attitude, fortitude and every thing else. I have many medical challenges, had MRSA Menginitis, was a quadriplegic But now i am totally fused, and can walk with a walker. I have severe osteoporisis, but nothing compared to what U R experiencing. I wish the medical field could really help u. I am so glad u have a spouse for support, companionship. I am alone, with out family, so it can be hard to get support. I tough out the pain, until i can no longer move. I also, try to remain positive, but it can be hard. Having severe illnesses, disability can greatly alter your life. It stops U dead, in your tracks. Then U dust off and keep going……. God Bless and i pray U will get some good news shortly. Keep on and never give up, please. I will walk beside U and try to give U some more strength

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    1. Lauren, thank you for sharing your story and for your beautiful and encouraging comment. You have gone through so much. Severe Osteoporosis is s horrible disease. My heart goes out to you. I will keep you in my prayers too. Like you I tough out the pain until it becomes a situation where I need medical intervention. I have to learn to not tough it out for quite so long as the extreme pain left untreated can cause other issues. Thankfully I do have an amazing medical team which gives both my husband and I some comfort. Lots of love xx

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  11. Sam, My heart absolutely breaks for you and for your husband.

    You are one of my spoonie inspirations because you always have an encouraging word to share with others…no matter what you are going through.

    I do know what it means to not respond to every treatment thrown at you but at least there are others to try. I can not imagine what it would be to have nothing more on the list…or no list at all.

    You are on my prayer list and if you ever have a specific prayer request, please let me know.

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    1. Thank you so much. Such a beautiful comment. Unfortunately my disease doesn’t have any treatment available apart from patching me up as things break or cause issues like my current severe spinal stenosis. Even then my disease causes complicated and often the “patch ups” fail.

      I think one of the hardest things is broken sleep due to the constant pain. Prayer for a good night’s sleep to give strength for the day would be greatly appreciated. Love Sam x

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