Last week was an interesting week in the health part of my world. It’s weird because I’ve been diagnosed with a lot of “rare” things. Some of them not so rare in 2018, but at the time I was diagnosed – yes. In April of 2018, I had major neck surgery. The surgery is the reason I started this blog – to keep myself in a calm place. Recovering my surgery was hard, but easier because I shared my experience with my friends on Facebook. I don’t have a lot of patience.
As time went on, I started talking about the emotional part of recovery, and how it affects me and talked to the “audience” to let them know they weren’t alone. I mean – if I’m going to talk, then I want to talk to someone who can benefit, even if I don’t know who they are… I’m in the process of moving all my blogs from Facebook to my website, but it’s time consuming.
It’s been a little over 2 months since surgery, and I’m still healing. I’m back at work, but I still have limitations, but they’re GETTING BETTER. I’ve noticed that my recovery has plateaued, but that’s OK. Below is the before and after of my surgery (from the inside).
I had my first neck surgery in 2004. This was my 2nd. I have another fusion surgery under my belt in my lower back that I had in 1999. That’s right, dissolving discs that can’t be prevented!
The above is how my incisions currently look. So, still healing, but doing SO MUCH BETTER. I’ve been back at work full-time for about 3 weeks. My employer, who is like family, allowed me to work from home, and take my time. He still tells me to slow down, but I don’t really know what that means. Sometimes you have to push through to see how far you can go. My body lets me know when I’ve crossed the line, and I listen.
During my surgery, my doctor (best doctor ever! – Eeric Truumees), he noticed that my bones were softer than they should be. He said it should have been like driving a nail through Igneous rock (for your info – Igneous rock is formed under intense heat from volcanic origins, where rocks crystallized by the cooling of the molten magma). It was more like Sandstone, and the screws went into the bone too easily. This led him to send me to get a Bone Density scan. He simply knew something wasn’t right. I’m 45, so having soft bones just isn’t normal. Off to get a Bone Density scan I went. It has been the least painful (no pain at all) test I’ve gotten in years! The test results are given to the bone scan doctor to review, and they told me my doctor would have it in 3-4 days. 4 hours later, my doctor was calling to tell me that I had Advanced Osteoporosis in my spine, and Osteopenia in my hips. They didn’t test any other areas, but I would hazard a guess that I have it in my jaw bones, as well. My jaw constantly pops these days. My lower back is also popping where I had my fusion in 1999. I know what that means. Surgery. It took 6 weeks after my Bone Density scan to get into an Endocrinologist’ office. I saw him last week….finally. He’s a very nice guy, but he seems worried about how to treat me. I’m 45. Not only should my bones be healthy, but I shouldn’t have HAD to have 3 spinal surgeries by the time I was 45. I asked my Endocrinologist how rare it is for someone my age to have Advanced Osteoporosis. He said he’d only seen 2 people in the last 2 years, and I was one of them. So, it’s pretty rare. I honestly didn’t believe the doctor who read the Bone Scan. I mean – I’m 45. That’s dumb, right? So, I have to get blood drawn and test for all these possibilities because why do I have it in the first place?
See below for the scale.
I have a -2.7 in my Spine, and a -1.6 in my hips. In order to get a handle on my spine, my doctor wants me to take 2 specific medications. More Information on Osteoporosis
Boniva is used to prevent and treat certain types of Osteoporosis. This medication works by slowing bone loss to help maintain strong bones and reduce the risk of broken bones (fractures). med info
Tymlos is the newest osteoporosis medication. Like teriparatide, it has the potential to rebuild bone. In a research trial comparing these two treatments, abaloparatide appeared to be as effective as teriparatide but was less likely to cause an excess of calcium. med info
From what my doctor tells me, I can take Boniva for 5 years, and then I have to pause. I can only take Tymlos for 2 years and then never again. So, once he gets my bloodwork back, he’ll determine next steps. No matter what, I have to start one of the meds in the next month.
I was talking to my boss about all these weird things I’ve been diagnosed with since I was 13-ish, and doctors have been treating the fallout for years, but have never been able to tell me if there is a main issue causing all these rarities or if all these rarities have happened as separate ailments. Most of these fall under – “you’re too young to have that.” mentality. It’s maddening sometimes. BUT, here’s the good news! I have always and WILL always live my life the way I want to. I’ve been dealing with this stuff my whole life, and I’m still here. Honestly, why would any doctor think to look for things that only happen to women who are substantially older? They wouldn’t. I wouldn’t. I blame no one. But, I couldn’t be more thankful that my neck surgeon took the time to look a little deeper into why my bones might be soft. I’ve NEVER had a doctor take the time to see what’s wrong outside of this domain. It’s just not a thing.
If you’ve been diagnosed with some uncommon things, I would make sure you get a 2nd opinion, and do your research. Make sure you trust your doctor. It’s YOUR body. You need to understand what’s going on inside it. I can’t say I’ve always made sure I understood. I was young when some of my stuff occurred and I just simply trusted my doctors. But, now, I’m not even remotely willing to just “take someone’s word for it”.
So, I’m in LIMBO until I get the blood test results back. Holding Pattern! I’ll update when I know something! Until then, I’m going to continue to work, play and live w/in reason due to healing from surgery!