My last post was pretty sad about being written off by another doctor, but as we all have to remember that after darkness, light has to come. It always happens. It’s nature.
After that neurologist totally wrote me off a couple days ago, I cried all night as I am still basically paralyzed without treatment. My regular medical team has been trying to figure it out, but it’s been complicated.
Yesterday, this doctor bursts into my room exclaiming, “I have transverse myelitis too!” I was diagnosed with transverse myelitis 3 years ago, which is a neuro immune disease that causes lesions on the spinal cord and demylenating of the nerves causing paralysis. My initial paralysis was temporary. I walked pretty well after 6 months, but I’ve always had bouts of paralysis and fatigue that no doctor has been able to really explain, even if they were trying really hard.
My diagnosis of transverse myelitis has been disputed, then upheld, then questioned and dismissed, even though I KNEW it was causing me problems. This wonderful doctor studied YEARS of my records, even before my diagnosis to try to get a picture. She absolutely said I have transverse myelitis.
Maybe you would wonder why I would be so thrilled with the news? It’s not so much the diagnosis, but as she lives it, she knows how to treat it.
I’m lying in the hospital with one of those bouts of paralysis now. The doctor told me she is going to push me TODAY to do things I never imagined. She knows the proper physical therapies, medications to treat the nerve pain as well as the debilitating fatigue that accompanies it
I have been lying in bed (mostly) for 14 months barely able to move most days. Today begins a new journey of movement and life.
I live in the mountains. She told me of an adaptive rock climbing group, a women’s wheelchair basketball team, and says she regularly hikes FAR with her hand crutches. She also says she takes her crutches to Zumba, yoga, dance classes…
It’s going to be me. I’m going to move. I’m going to push myself to get out. I’m going to be independent. I’m going to be wheeling around in my new wheelchair that I’m actually excited for.
Some words of wisdom she shared with me that I thought might be useful for anyone, especially people with trauma or chronic illness is that she talked about properly filling your cup. She says hiking and Zumba fill her cup. Being sedentary and not getting out on the days it’s harder drains her cup. She told me I’m going to have to figure out what keeps my cup full. I know blogging does! I’ll figure out the rest too.
Nonetheless, this is the first day in an exciting journey for me to go from being chronically ill to actively disabled. Overcoming so much of my CPTSD and now having an active life is more hope and joy than I’ve ever experienced.
Find a bit of joy that’s happened to you, whether a friend sent a nice text, or you’re wearing your favorite shirt, or you get to eat something yummy this weekend, or you just have some peace.
I would also love if people would comment or email or text me what they do to keep their cup full.
With much love, gratitude, hope, and belief in miracles,
(My picture of my waking up this morning was my little smile knowing my life is changing a lot beginning today!!)