It's my Birthday, I'm a Rock Star!
Monday, September 24, 2007
OOOOOO - a day of ups and downs, and it's only half over. A big realization:
Mom never made it to her 51st. I miss you Mom! And I promise to live enough for the both of us for as long as I can!!!
I spent a lot of time today on a short novella in response to an inquiry on a thread, so I'll put it here for today's journal:
"Elizabeth...I'm curious about your brain injury. Could you tell me how it occurred and what the residuals are? If you feel uncomfortable talking about it, that's ok."
Oh, I have NO problem talking about it! I feel very blessed to have overcome the challenges I've faced, and this is just one of them. If talking about my experiences can help just one person, it's worth it!
In November 1994, I was running upstairs, with my hands full, and caught my toe at the top. It was just one of those freak moments that happen all the time, but you catch yourself before you fall. This time I didn't.
I landed on our dining room floor, linoleum on concrete, first on the left side of my face, then my right hand slammed down, and then the rest of me.
I wrenched my neck, twisting it hard when I landed, causing permanent damage and long-term problems there as well. I hit my hand so hard I couldn't use it for weeks (they were sure it was broken, but it wasn't - I've got very solid bones); so, extending that impact to my head...
Belonging to an HMO, the treatment consisted of "let's wait and see what happens." I was "foggy" for awhile, massive headache, nausea and fatigue, you name it, but when my husband couldn't wake me up about two weeks later, he took me to the ER.
They did a CAT scan (no contrast) and said I had a concussion (DUH), but I'd be fine - oh, and to wait and see how I felt in a few weeks. When I'd go to my PCP and beg for help with my growing symptoms, he'd say head injuries often heal on their own - and just give it a few more months!!!
When I'd demand to see a neurologist or have more definitive tests, my PCP would say he requested the referrals and they were denied (later, the owner of the medical group said the referrals were never submitted).
We'll never know what the delay cost in terms of healing, or if the damage was inevitable. It wasn't the HMO that was limiting my treatment, but the medical group itself; unfortunately, I had to go through the med group's months-long appeals processes over and over, before I could even contact the actual insurance to complain.
Since I was going through a brutal divorce, I was afraid to push too hard on the medical side, for fear I'd be found to be unfit as a mom because of my physical problems. Even though my ex didn't want custody, and they wouldn't have been willing to live with him anyway, that wouldn't have stopped him from using the information to cause me as many legal difficulties as possible. That delayed me from aggressively fighting the system for two years.
After filing a legal complaint against the medical group, the owner and his lawyers got involved and I finally got to see a competent neurologist (actually three), and have CT scans and MRIs. I have to say, he really stepped up to the plate and did all he could (after the fact, unfortunately) to help me, starting with transferring me to a physician with a stellar reputation (I LOVE him!) and blanket approval for any tests, treatment and referrals he felt were necessary.
They say surgery isn't an option, because I do have sensation, and enough control and strength so that the risks and unknowns of surgery aren't worth what improvment may or may not result. Also, the neurologist said it's impossible to sort out how much of my physical effects (partial paralysis, lack of strength and function, muscle seizing and spasms, PAIN PAIN PAIN!) are caused by the spinal damage, and how much is from the brain injury and therefore unaffected by surgery.
The main neuro specialist said he thinks a lot is from the kind of systemic damage (I also have a lot of inflamation in my lower spine) that fixing the impairments in the neck won't help at all.
While the physical effects seem to be permanent, my brain injury had been healing very well - the neurologists have been AMAZED. The effects now are minimal, some speech problems, drooling and lack of tongue control, and short term memory lapses.
At first, I was a real basket case. I couldn't recognize numbers, so I couldn't do basic math or even write down a phone number. I "lost" simple words, unable to remember what to say (like "pot" and "car" and "take" and "up", etc); I'd draw pictures so my kids could understand what I meant. I stuttered uncontrollably, and drooled a lot, and my tongue would fall out of my mouth if I didn't concentrate on it. Later I was diagnosed with sleep apnea, which began suddenly and with a vengence after the injury, which caused its own set of health and quality of life problems!
And yes, through it all (for two and a half years), I was working as a secretary. I gradually cut back my hours from 35 to about ten per week, and I'd have setbacks that would keep me out of work for weeks (once, for three months), but my bosses - the Board of Elders at Immanuel Church - stood by me loyally.
They instructed my assistant to help me in every way; she was my legs, wrote down numbers for me, met me in the parking lot to get me and my wheelchair out, and then put us back in at the end of the day! She took over the hours as I had to work less and less, and continues to be a good friend today.
I've mentioned how my kids and I joke about my brain damage - obviously it was a traumatic and difficult time for them (they were 9 and 14-1/2), but we made it through with few problems between us. They have always been so wonderful and accepting of my faults and limits! And now my (new) husband is the same. I am very very blessed!