Tuesday, January 18, 2011

Tap Dancing through Wet Cement...(Or What M.S. is really like )


Bear with me....Sometimes I feel small in All of this...this is only my 4th Blogpost on M.S. in many years of blogging.....
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It's pretty isn't it ? I love that you can tell someone carved it and painted it, worked the wood with love. I love that a friend gave it to me, that she bought it at Zoo in California and that it is made by a woman....I love that it is from a Baobab tree of Kenya...I love that it is to look like a Zebra....Which for me is so horse like...I love that it is a gift,but somehow it is the exact height for me, even though my lovely friend is an online friend and she was not so sure how tall I was...I love that it is So Arty...So well crafted....that it is so strong and so sturdy...I even named it...KENNY...( from Kenya...)....And in Winter I am so grateful to have Kenny...because well...Getting through Heavy Snow is like Tap Dancing through Wet Cement...But..

BUT....

But I wish it was for Someone Else...I wish it was not for me.....

In 2004 I was first diagnosed with MS when a disturbing pattern of symptoms collided in on me..actually it turned out to be a Multiple Diagnosis...but that is a much longer story for another time..Suffice it to say......A lovely neurologist on West Coast, said that she was concerned I had MS , perhaps ALS. She wanted to order Another MRI and she wanted to do Tests. But my Insurance at the time said no. I had had an MRI in 2002, and that was recent enough, that they would only cover one every 5 years. And yes there was some concerning "things" on it, some "spots", and yes it did warrant followup, but not another $1500 MRI they said. I remember joking well, Homer Simpson had crayon in his head, so maybe we should make sure of What the Said Spot was, make sure it was not a crayon...I was desperately trying to not have to really know what the Spot was...But.......( She didn't share my sense of humor...) If one wakes up with numb gripless hands and trouble swallowing one clings to Humor...and prays that their Insurance Company will do the Right Thing...But....

And about the Insurance Company....Gee it's not like I was asking to buy myself something of a Luxory, a damn Cruise or ill deserved Prada Shoes.... this was a Real Doctor asking to Look further at my Innerds because there was Something Wrong... And Since I had other symptoms the Doctor said it would be good to be evaluated further. And the Insurance Company said "Well if that is the case...We need you to go to one of our Centers of Excellence for further evaluation, we have Eight Hospitals in the Country you can choose." ( Yeah., because we know that when someone is Really sick they really want to travel ??? ) Long story short, for anyone who cares THIS is part of How I ended up in Cleveland....

Longer Story within 14 months of seeing her I was canceled by Insurance, not because of the MS, but because of Breast Cancer in my family. Yup....totally screwed over by TWO different companies...It amazes me...a Nurse what Crappy Insurance Companies we have Determining Level of Care and access of Care in this country..... A Thorough Doctor ordered some bloodwork related to Family History ( BRCA testing ) and Voila, within 4 weeks canceled....*POOF* No More Insurance, No More Medical Care...$440 dollars /month....swept away...( Which is damn ironic, because if anything Someone with a gene situation, a family history should be getting screened and checked and monitored...NOT Cancelled...and frankly damnit I think millions of Women are being discriminated against.......but that is a Beef for another day....)

So I have coped quietly with it...Ignored it, cursing it ever so silently.Other times fighting it...or even trying to Make Nice with it... But the last few years it has not been something I could ignore, not something I could curse so silently. I feel like I have the flu, all the time. "Fatigue " Is a REAL thing...I feel like I am drowning in it...its all encompassing..like a bed of quicksand a cold heavy sensation that requires a wrestling match to get out of bed.....And I don't cope with Temperature changes well, if I get Cold, I can not get warm. And if I wake up and my leg is "Numb" I know it will be like that all day, that I will drag it around like an old rotted piece of luggage.

And other nights , especially when I have been working that I will have leg cramps all night. And Stiffness, I wake up in the morning and give orders out to my limbs and Nothing happens, I lay there like a giant lump of Stale Playdough. I move through the day like the Tinman from the Wizard of Oz, creaking and getting stuck...Except there is no magic Oil Can....Other times I have fallen asleep and then when I wake up my arm is trapped underneath and I can't roll to get it out. It sounds almost comical, but it isn't.....And My Brain seems fine, ticking along and I know it still gives orders" Get up the Stairs"....but there are little dendrites down there ignoring the Orders...

But my brain is still ok...It is Still ME...still Thinking too much ...Worrying too much ...Reading too much....But on another level I know I am too sensitive...about ALL of THIS....A Friend sent me a video of a Model or a Beauty Queen falling....and I know she thought it was funny ...but for me it hit...it hit hard...it made me cry....It reminded me of that Sensation of falling...that OH NO sensation....and then the announcer on the video laughing too loudly ...it felt Cruel...it felt Real....for me I have fallen and people laugh....and been the Only One not laughing....So yeah, I guess my Sense of Humor is now damaged...and I tried to explain it to the friend....but I was left feeling empty and More Alone...off in the distance with my lack of Humor...my fear of falling...

Now back to The Cane. I don't use it all the time, only when I have to. So I wake up and I look out the window and there is new fresh snow,and it looks ever so pretty..... but I also know there is old snow and ice underneath Lurking. I use the cane because I know if I start to fall I have no way to get up. And I fall more now, even inside I fall. It happens when I am really tired, for no reason. It is like Someone came up and pulled the rug out from under me... KaPAM...Boom ...down I go before I can think or stop it. and then getting up depends on what is near by, what I can use to leverage myself. It becomes a Process thinking it all through...And I even joke with my son asking if I should yell Timber....

I used to have this amazing "Walk", I had this way of walking that people would look at. It was this way of entering a room. A way of being Strong even if doing so silently. I really miss that...Miss having people look at me when I enter the room, miss feeling that buoyant ...that Strong...that Indestructible. In my dreams...sleeping i still have that Look, that Walk....and the cane is never in the Dreams....



And I know that there are times I am really really tired and I know Stairs are getting harder and harder...and I know that someday I won't be able to do them. Even now there are certain days I start limiting the trips up and down the stairs, because if I get too tired I know I fall more, on the stairs, up or down....it doesn't even matter. And yes for anyone who knows it's true I moved this year because we lived on a house on a Hill. I called it Hell Hill 29 steps to the Front Door.....it was too much ...So Now I am on a flat street and 5 steps to the front door. Even Steps, and NO Hill.

It is so funny....No one would know I used to run Half Marathons or that I swam and was a lifeguard..I stare at my legs or my arms and I don't see any of that anymore..I see ??? Mashed Potatoes ? I think what happened to the Tone, where did it go ? From 2004 on I tried to work with hand weights, and that became laughable, from 3 to 2 to 1 pound. Now I use a Bean Can.....

When you don't have insurance you get Creative. You do things like a bean can as PT. You order antibiotics from Vet Companies ( for fish). And you go to the Doc in the Box for basic meds, and pray you are self medicating properly. When I sprained my ankle working at the market I used Duct Tape, and it worked like a charm....But it all becomes like a bad movie....except it is your life...

I know this is about Letting Go and Control and Letting the Changes come and Coping and Still trying to have some dignity and some grace and Learning to Cope and that Everyone has Something they are trying to Cope with....But I don't know ME anymore or my body...and I feel like I am letting go of pieces of me...in 20 directions...vision and hearing and coordination and I miss going for LONG walks and I hate always looking...SEARCHING for benches when I go for a walk.... I hate that I feel like I have just run 14 miles...all the time....that I wake up feeling like that .......


I hate that I can't run anymore....and that I can't even dance...and yoga ...well trying to hold poses is almost impossible...definitely something I can't do around others....that everything has become Watching...That I am too sensitive now...That Someone posts a Crass Joke about "Scooters" and I can't laugh...because I KNOW there is a scooter waiting for my in my future.,..just around the corner....And that I will have to move again to a place with no stairs....but I have to get my son to NYC...so that can't happen yet...not yet....

And people say...well...can you still Nurse, and I say , only certain kinds...I can 't be a Floor nurse any more...no more ER....I was a great ER nurse....really...but now everything revolves in planning how long I can stand.....I even worked at a grocery store for a while , attempting to get Health Insurance....and the bottom line is that all of that lifting and bending and standing was so so painful and I would get stiff and stuck...I could barely make it home at night....I would walk home and try to figure out how to get into the house without doing the 29 steps, and I finally found a way to crawl through the backyard bushes...I can laugh at it now...It all sounds so absurd...a Nurse working as a checker to try to get healthcare.....and then crawling through the yard to escape THE Evil Hill.

And people say well Apply for Disability....But if I do that I lose so so much...I lose my Nursing License...ME...I lose ME the Nurse and I lose even my driving License...So I am NOT willing to do that...Not yet....Because even if I am weak and "Stuck"...and laying in bed I can still help someone get the Hospice Care they need or diagnose my best friend's friend 6000 miles away with Typhoid....I still have ALL my nursing skills intact, I have cared for hundreds and hundreds and I am now supposed to LOSE THAT because I have trouble lifting a bag of groceries ? or standing for more than 20 minutes ? that just isn't right.....sorry....but it isn't....

10 comments:

Mary Wallace said...

Do NOT give up! Take good care of yourself, but don't give up! You will eventually get to the point in your life where you will transform who you are, but let that come to you at the right time. You are a beautiful beacon, and you have so much more life to live and to give. I'm so impressed with your spirit... Stay filled with life!

Pink Granite said...

I don't have the words I need.
But my heart goes out to you.
I admire your courage.
I hate how insanely unfair it all is.
Peace and love...
- Lee

enigma4ever said...

thank you ....both of you...very grateful....

candleinthewind69@yahoo.com said...

my hope is that you publish your fierce determination,creativity,stubborness,and articulation of things in life that will not get better.. Disiblity is just what it is, debilitating and fragmenting of all the atributes that define "YOU" this brought tears and aching pain..but also strength and humor @ a time needed..I value you, and thankyou. mar

enigma4ever said...

dear Marlene...
thank you....I am sorry it brought you tears...hope you are ok....I don't want to bring anyone pain...I am just trying to let go and be more honest about things....as they are....

jonraymond said...

You should move to LA instead of NYC. No snow here. Think about that. Plus it is the center of the film industry. Some people actually make a living doing extra work, which requires absolutely no experience or skill at anything whatsoever. Brad Pitt started that way. Not that he isn't skilled. But I digress.

There are rents from around $700 or so. Not the best of places. But they can be in some cool locations. Between $1K and $2K you're on the nice side of town. Anyway, I'd hate to see you have to deal with snow. I know you used to it, but maybe LA weather would get you out and about. Walking is the best exercise. I love your picture of the stairs.

enigma4ever said...

oh jon thank you........
6-6 and I have debated the LA vs NYC thing over and over....sigh.....I loved Cali when we were there before....really did...( still do...miss it...)

I love walking...it's kind of my thing...going for long walks with my dog...and it's a very real part of who I am ..I have always lived where I could walk to a market and library....

We will see what happens....in the end I think I will end up back that way at some point....and I know I hope and pray that 6-6 ends up out there...because that is where his "Work" ...Dream ...drive is ....

Utah Savage said...

Allie, I cry so seldom, so callous I seem some times. So little really moves me to more than anger, and there is anger at the insurance companies and our barbaric healthcare system... But it's your brilliant sensitive writing about your experience with this system that makes me cry. Don't feel bad that this brings tears. These tears remind me that I'm human and still capable of empathy, still capable to feeling connected to a friend I've never met.

We must change the system, must fight the strangle hold the corporations have on our lives. I've had my own battle with an insurance company and know how little power I had to keep them from dropping me once I got a diagnosis they didn't like. It's a great shame that we haven't joined the civilized world when it comes to caring for us, keeping us healthy, treating us when we get sick. It's that shame and rage at that system that makes me cry at this story of yours. Please keep writing about your experience. Yours is a story that needs to be told and you tell it so beautifully. Don't stop.

Bustednuckles said...

You just made me cry.

Best of luck, the frustration is plainly evident.

Busted

enigma4ever said...

I am so sorry...dear Busted...didn't mean to make you or anyone cry..was just trying to be honest...with myself and reality...so sorry...many hugs friend...