The best Christmas I could ever receive is the ability now to use my legs longer, stronger. Longer than just going to the bathroom, more often than just those few minutes at a time. Progress continues. Recovery from pain with the hope to re integrate back into society on a full part time basis. Perhaps one day, full time.Thinking back to the end of August when there really wasn’t any hope left inside me and fear still impacted me greatly. Not because of my legs so much, didn’t think that could be changed as much as it has been, but my spine, neck, arms, my hand(s). How would I do anything losing them? That’s what I had left. In 2013, 4 days after surgery, the second one in a year, I was still trying understand other issues internally. My OBGYN suggested burning the lining off my uterus due to increased thickness. I passed on that and instead chose Nexplanon to control those symptoms. I had it implanted in my left arm so that I could reduce any chance of CRPS spread to my worse side. It worked fairly well until new Ovarian cysts began growing at a rapid rate. I dealt with that with repeated ultra sounds for over half the year in 2015. In 2014 I did though have surgery to replace my internal SCS battery for the next 9 years. Choices. Which was more important. This was. Also in 2015, after a colonoscopy where a polyp was removed from inside there and the diagnosis of Diverticulitis and a few other things, I was suppose to have band ligation surgery to repair those problems. I didn’t have it. I had to have Nexplanon removed due to the cysts. I’ve had ovarian cysts since first discovered during an exploratory laparotomy when I was 22. Not that big of a deal. I did allow that to be recorded and used in teaching hospitals.
I was draining so fast. Physically was one thing already, emotionally became it’s own troublesome dilemma. None of this included family. Husband or children. My husbands recovery from quadruple open heart surgery in December of 2012, or our daughters diagnosis of EHE in 2013 or our sons birth defect diagnosis from Shriners hospital in 2014 or our daughters ongoing appointments at Stanford’s liver transplant clinic, or the other things only a handful of people know at all.
I’ve had 2 documented TBI’s. 1 when I was 17 and the other at the time of the same injury that led to my CRPS diagnosis. In 2013 I was diagnosed by overnight sleep studies with central and obstructive sleep apnea (mixed/complex apnea), cheyne stokes respiration and narcolepsy. I’ve actually had 2 overnight sleep studies and a 2 week at home study using a breathing machine. I was prescribed an ASV unit. Auto Servo Ventilator.
My lower back has been incised twice and my right butt cheek 3 times. Each time over previous incisions. Those things I rarely talk about. Those scars look good though. I sometimes wonder if my belly scar that’s over 25 years old, 10 inches wide or about, torn, and my back scars aren’t contributing to discomfort from scar tissue. Or my belly button due to several laparoscopies over the years and the 4 other tinier scars on my stomach that could be contributing. Maybe not the smaller ones, I have little doubts about my belly and my back because they are front and back to each other. How can anything work right around organs in the space between the scar tissue? I really don’t know. I’ve already had part of my liver removed (2013) and I haven’t had the other lesions on the rest of it checked since. One good thing about the liver is it grows back quickly.
Due to strengthening myself, my internal battery is shifting. It was already fairly low and that’s why I often shift to my left butt cheek when sitting. Otherwise I’m constantly sitting on it. Sore. It’s numb over the scar itself, don’t much feel that, but there’s some intensity outside that area like getting stabbed or socked in the butt all day. I can’t have it checked because I don’t have a provider/physician for my SCS anymore. I have to be careful of abrupt shifting and be mindful not to do anything that will tug the 2 leads on my spine. One of which is center and the other to the right. I also cannot not let it get in the way of healing progress, movement, and all these physical accomplishments.
Earlier this week I took 2 walks 2 days in a row. First time with my daughter Kharisma and grandson De’Mantai. The second time, I was heading off by myself, but took ‘Tai with me. I made it a couple of blocks each way. Without having had MLT (Manual Ligament Therapy) via the Gohl Program, or the custom fit orthotics I might have made that first walk, but wouldn’t have even tried the second. Since summer time, when ‘Tai comes over we do go for a walk. I had already started trying just didn’t get that far. I had to do it around pain being leveled off, not just get up and go. When I had to sit, I’d just plop down on the sidewalk. Ha! Oh and I’m sure my new shoes helped. My feet dislike feeling confined. My toes dislike feeling squished even when they really aren’t.
Yeah it’s good Christmas.
Hoping 2017 becomes a brand new start using all I’ve learned and endured on my path for all the years to come.