October was a mixed bag…the Manipulation Under Anesthesia (MUA) was postponed from the 05th to the 19th. There was already so much uncertainty surrounding the procedure that I was not sure if the delay was a positive or negative omen but I was so emotionally exhausted that “Que Sera, Sera” was the only reaction I had to give.
I instead tried to focus on making progress in my physical rehabilitation. The thought process was that if the MUA was a success, I needed to be strong enough to start walking immediately to avoid a recurrence of the Neurogenic Heterotopic Ossification (NHO), as such, I worked on strengthening my core and lower back muscles and bringing myself to a standing position independent of the partial weight-bearing harness. I used the parallel bars for support and balance and with minimum assistance I was able to pull myself up; despite the fact that I was bent over at the hips and had a death grip on the bars I was standing…I cannot find the words to express how it felt to be able to stand on my own for the first time in 8 months, in that moment the fact that I was not moving was unimportant.
In addition, my arm strength was definitely improving, I was able to use a medical trapeze bar to pull my upper body off the bed and provided the bed and wheelchair were at the same level I could transfer from one to the other using a transfer board. I would only get pain and stiffness in my hands and fingers if I over-worked them or if it was rainy.
On the flip side, the pain and stiffness in my left shoulder and the shock-like sensations, tingling, numbness, burning and cramping in my lower back and legs was just as constant and severe as before. My ankles were swelling periodically and I was hypersensitive to touch, any contact would send searing jolts of pain through my feet which made something as simple as applying lotion unpleasant.
If I had to list the worst things that I have experienced because of GBS, lack of bladder and bowel control would be in the top 10. It was huge relief when I was finally able to stop using adult diapers, again words fail me but if I were able to smile, it would have been beaming!
I believe the anxiety and emotional stress I felt triggered another episode with vomiting and stomach pain but I was able to recover quickly and be physically able to undergo the procedure.
October 19th, 258 days with GBS & NHO – I desperately wanted the MUA to be added to the list of milestones that left me without words…
*** hope is the little voice that whispers “maybe” when the entire world is screaming “NO” ***
