5 untetherings??

July 25, 2006

Hi (BTW - The way your messages begin makes me laugh every time you send a

post...)

I had my last one (I think) about eighteen months ago, maybe two years ago?

I've had chemical meningitis with one, two very large spinal fluid leaks...one

completely under the skin, the other leaked to the outside for three long months

before surgery was done..both needed long surgeries to correct. I woke up from

one surgery unable to move my leg - not one movement at all for a few days, then

it was back as quickly as lost. My first one...no pain at all previous to it.

Well, some lower leg pain. But, nothing to really write home about. Never

stopped one thing except walking once in a great while. It would just lock up -

the muscles. Weird, but after the surgery, I had horrible pain and it never

left. My bladder went completely and I had to self-cath. That was why I kept

having more and more untetherings. The decline kept coming and coming...

I too have Chiari, no surgery thankfully though (only one nsg out of all I've

seen over the years recommended it...I'm very fortunate.)

The only thing about this that is sad for me is my youngest...he's my only son.

We have three girls also. They were in high school when I was diagnosed and

started the decline. I had already done the backyard baseball games with them

and the driveway hoops, running around the block four times a week with a

couple, diving into the water from boards and boats, snowmobiling, cross country

skiing, you name it, I had already done it with our daughters.

Our son though was only nine. Extremely sensitive to what I went through,

although silent about it until a few years ago. When I asked him once about him

and me playing catch at the beach (we were looking at old pictures), he said it

was funny, he couldn't remember me " healthy " or playing hard with him. He has

absolutely no recollection of me doing anything vigorous, rigorous or

breath-enducing. I find that the saddest, that he only remembers me as " sick " .

Always having doctors' appt.s, although he admits when it first started he

didn't understand it (in the beginning I wouldn't allow anyone in our house to

tell anyone outside of the house that I was dealing with anything, which in

turn, made it impossible for anyone in the house to admit what they were dealing

with...my one life regret...)

That's truly the only thing that bothers me about having this stupid thing.

Well, that and my grandchildren will not know any different either. I know I

can do a million other things with them, but activity was so important in my

life before this came along, it's hard to change stripes when it's ingrained.

But, there are so many people that have it so much worse than me with physical

problems. (Although their attitudes toward what they go through is better than

mine...a thousand times better.) I had a normal childhood, not having clue-one

that anything was wrong with me. Didn't everyone pee when they laughed? Wear

two left shoes for four years because of feet problems? Have constant

bladder/kidney infections until I reached the impossible height of 5'10 " . But,

honestly, strangely, once I reached full height...all the problems I had that no

doctor could diagnose, stopped almost overnight.

No more problems until about eight years before my diagnosis, I was running down

my cellar stairs (oak) and fell, landing on my butt on one,- landed so hard that

the stair broke in half (not due to my weight, I'm not over-weight.) The pain

was unbearable for quite a while, but I didn't go to a doctor because my husband

kept telling me that if I broke my tailbone there was nothing that could be

done. So, for eight years I declined not knowing that all my strange problems

were one big problem. I never complained about one of my strange symptoms to a

doctor (the leaking, the fact that I was doing aerobics 4-8 times a week and

couldn't get a muscle in my left leg to even flex, etc.)

But, all that aside. I am so very grateful for not knowing I had this when I

was pregnant with all four of my children. I probably wouldn't have become

pregnant four times knowing what the pregnancy and birth can do to us (right

? Well, actually, like , I probably would have done it and just

hoped and prayed for the best...I really wanted a large family desperately to be

honest.)

I'm terrible in some respects. I don't think about my condition. The pain is

something that stops me from doing certain things. It keeps me from wanting to

walk on carpets barefoot because the pain from my feet touching the carpet is

completely unbearable at times (that's what I'm dealing with today, that and

vomiting so it's what is on my mind, but in isolation if that makes sense).

But, it's an isolated thing...I don't think of this during the day the way I

think of other things. Strange...I always wonder if other people are the same.