It seems that my condition might be a bit confusing to people so I am posting to shed light on what exactly is wrong with me. I have radiation myelitis.
It is defined as: damage to a portion of the spinal cord from exposure to x-rays or other high-energy radiation; most often affects the cervical segments; depending on their time of onset and persistence, two forms are recognized: the early type which appears within 6 months following irradiation and may be transient, and the late, delayed type, which appears more than 6 months after radiation and is typically chronic and progressive.
The damage to my spinal cord is exactly where they did my rads. Since my diagnosis and recent set back I have had several MRI scans and steroid infusions. To date my scans and treatment have stopped the progression of my damage however it has not improved my situation.
Exactly how this damage to my spinal cord messes up my mobility and such can be better explained by the Transverse Myelitis Association at http://www.myelitis.org/. My myelitis isn't transverse but is very similar and I am given much the same treatment options and use their discussion boards as a resource for my symptoms and on the look out for drugs that could help.
I often get asked if I am better.......I feel the need to explain that this condition will not just get better overnight after a hospital stay or drip of drugs. My neurologist has told me that it could take several years to see improvements. So like the cancer I guess I am in this for the long haul. At this point I pray that my condition doesn't get worse and at some point gets better. Right now I need a cane to walk, I drag my right foot, the stairs are very difficult to maneuver, I have to sit to dress myself since I can barely bend over and I can't drive since I can hardly lift my right foot.
I am frustrated and emotionally spent these past few days. I need time to adjust to my new normal and move on with life. My priority is always the little z's and making sure my disabilities don't impact their lives. They are great, helpful, and mindful of my new issues. I just wish they didn't have to deal with all this bs.
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3 comments:
Heather: Churchill was right....keep right on going. You have endured way too much but you have done it with such grace and determination. I admire you for all of that and for always keeping the little z's front and center. They are so blessed with both their parents. We treasured sharing the weekend with you Mom....and yes, I did share Tyler with her. ( I had him to myself all day Monday so I caught up!)
Keep looking forward and if the only road to better times is the long one then stay the course. I looked at the faces of your three cherubs and there indeed is your motivation. Can't wait to toss Tyler into the mix and let him learn the ropes from your darlings! There could not be a better threesome for him to learn from.....and that is a tribute to you.
Love you BIG! Aunt Joyce
One of the moms here in the neighborhood has been confined to a wheel chair since 2 weeks after having her 3rd child.
She camps, plays sports, swims, and keeps them on their toes... Her kids are normal and don't look at their mom any different than the rest of us walking on 2 feet.
No matter what the outcome... better or worse you'll give those little Z's a run for their money :)
Yes exactly, in some moments I can say that I jibe consent to with you, but you may be making allowance for other options.
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