Journey On
I haven't updated anyone medically in a very long time. I think I needed to come to terms with everything myself.
Here we are. July 2022. I really thought I had it all figured out. Back in 2018 when my health started to decline and then in 2019 when things rapidly picked up. I fought so hard to find answers as to why everything was happening.
I was met with many diagnosis and took them head on. Seeked out specialists and treatments on my own and learned everything I could to connect as many dots as I could.
I am so grateful for all I have learned, but we were no closer to finding an answer to why I was declining, and why my body was suddenly failing.
No matter what I was faced with I remained positive and hopeful that I would find THE answer. THE missing piece. In 2021, I thought I did. I thought I figured it all out. I figured out the answer to my symptoms to why everything was happening and a way to slowly bring me back to what I once was. To what I thought was truly my baseline.
I thought cervical instability was the answer. Maybe this was the cause to my rapid decline. If you don't know Ehlers-Danlos Syndrome is a genetic condition that affect connective tissues supporting the skin, bones, blood vessels, and many other organs and tissues throughout the body.
This could very well be the cause to my symptoms going back to 2018 and how they started, which all made sense!! I truly thought this was it, this is what started everything declining!
Cervical Instability and where your nerves and spinal cord are, etc. Well if any of it are touched, misaligned, etc. It can cause a TON of problems! This is also rare unless you have had a severe whiplash injury or have a medical condition like EDS where your joints tend to be at risk of subluxing.
In simple terms my neck is hypermobile and moves too much putting pressure on neighboring ligaments and nerves. This is also a risk, due to the spinal cord. This is causing a TON of other symptoms but also making other conditions worse. The condition of my hypermobility is pretty significant.
In January 2022 I drove over 2 hours to have a specialized X-ray done which showed I do in fact have cervical instability. I was correct! Pretty much my whole neck is hypermobile except in 1 spot (gotta be the unicorn and stick out from the zebras). Due to the severity its unlikely this started only a few short years ago and is something that this has been on going for many years.
This was the result of Ehlers-Danlos Syndrome and likely the Mitochondrial Disease I have making my muscles weak, causing the instability. Given the severity on one side, it wasn't the side of the vagus nerve which I assumed or thought it was because of the symptoms that progressed first. Initially I was hopeful this might give further insight as to why my symptoms are as bad and how my life declined as rapidly as it did.
My entire spine has been straightening. Meaning I am losing the natural curve you're supposed to have. I've had severe neck and back pain for so many years. This has now been explained. Its believed entire spine is hypermobile and is subluxing as I move and change positions. This is why I have nerve pain and numbness throughout my body. Why my legs have grown weaker over the years. I've just ignored the signs and brushed it off.
The pelvic floor physical therapist who thought it was a tethered cord back in 2019 causing the paralysis. She actually wasn't far off. We just didn't do the right test, and didn't expect my spine to be subluxing or putting pressure in such a way, that something like that was possible.
I am putting off spinal fusion for as long as I can, but that is the next step in this. The pain is getting much worse as are the migraines, and daily pain. When I stand, its like my center of gravity shifts at times and its a feeling I can't even explain.
My oldest has a condition with her spine, and is at that age she is starting to experience pain in her spine, neck, joints and is having muscle fatigue at times. I don't publicly talk about my children's medical stuff much, but these conditions are genetic. Both kids have varying things going on even if I don't ever speak on them. Its difficult to see them going through it. Please keep them in your thoughts too.
My body is what it is and there isn't anything I can do. I have the answers and the reasons as to why everything is happening. The cause and I can't fight my own genetics or why life happens this way. All I can do is learn to accept it, grow from it, and be the best version of myself I can be!
I hit a dark period this year learning this news and not knowing what to do with it and where to go. Learning this is it, there is simply no other cause then genetics and timing. Things will progress and I just have to be prepared for that.
I'm nothing without the journey. I'm still here for a reason. I'm slowly pulling myself up. I appreciate those who have remained by my side. I'll be updating more. I have a few appointments coming up on starting the process for my spine. Stay tuned!
Keep Fighting to Breathe Another Day! 💜
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