Still winning this uphill battle

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Still winning this uphill battle

Postby BabyHead » Fri Feb 25, 2011 11:43 pm

Good news is something we can all use for a change. A friend recently called and reminded me of how blessed I am..."freaking amazingly, lucky", was what she said exactly. I am and need to share with those whom have lost sight...This happened when I was at a low point and was really going thru those horrible what if thoughts everyone with cm/sm gets.

I am steadily approaching my 42nd yr & nice to say that over the past 5yrs I've been treating my cm/sm, it's been a haze of sorts & can't remember much, so really feel as if it's closer to my mid 30's. This isn't something that matters as each year is another one that I beat this thing and it didn't hurt me too bad.

Since my cm/sm dx in 08/2005, I've endured PFD 08/05,tear in my sub-arachnoid tissue, allowing an 1100cc CSF leak to my mid brain 09/05, LPS 04/06,LPS rev 07/06, LPS removal 04/07, VPS 04/09, VPS rev 04/10, 19 LP's (to prove I was over pressure), and last but not least Gastric Bypass 12/10. All of these surgeries were to try and alleviate the increasing pressure in my head...some of them have worked so well, others not so.

This is a success story after all and without the joys and wonders of modern medicine I would not be here to tell this one. Just over 2 yrs ago I was pushing a walker, with a child's bucket on the handle so I could vomit, nearly blind in one eye, over 275lbs & on more drugs than some dr's will prescribe in a month!! A prime example of how horribly cm/sm rips your health and well being from your very soul and leaves you a shell with just enough sense to know it's not you any longer...

In April of 2009 I enjoyed something I hope all with this disease will experience, pure relief, joy beyond my wildest dreams, my vision, my memory, reduction in pain, a new life. I had the quality I never knew exisited for the first 6 months, spent the next 6 trying to convince my ns something was wrong...he revised my shunt in April of 2010 and again, I awoke from a very long, foggy, dream...

Though I've had my ups and downs, I am not just living with cm/sm, I am surviving it. Many doctors told me to eat whatever I could, when I could...that it wouldn't make a difference, the outcome would be the same. They were wrong in my case. I have found that eating to support a body that is in a constant battle, well you have got to fight with the best weapons to win!!

The pain?? This too is something I am no stranger to. A dear friend, and roommate at the time adopted a 2yo Weimeraner, and drug me with them to exercise every nite...taking pictures of the dog as he ran and jumped and made me wish I were more spry to run with him....he got me walking..soon he got me forgetting the pain and enjoying the life I have.

I live alone now, in the shadow of the Redwoods. I no longer have a walker or the bucket, my vision has not improved much since the initial LPS..I did pass my eye test & have a valid CA dl, a vehicle and insurance, I am down to 1 pain medication prn, have done some volunteer care-giving & found there's a world out there and I/we CAN get to it if we WANT.


There are some things I will never be again, yet recently realized I need to be happy with whom I have become as I have battled and won, I keep getting back up, keep trying...visualizing the boss that fired me for having this disease, the people whom said it was impossible to come back from the way I was, the labels people give when they figure you wont hear or live long enough to say anything....all the negative! I know in my heart i am the only one whom can make me happy, so I do...every day.

I get down to the beach, I play with the neighbor's dog, dig in the garden, shoot pictures, enjoy the weather, laugh, smile more than frown...may sound silly, to me the biggest success is the ability to live through this and enjoy some part of every day.
BabyHead
 
Posts: 6
Joined: Sat Apr 18, 2009 8:18 pm

Re: Still winning this uphill battle

Postby bee40 » Tue Jun 28, 2011 7:39 pm

I just want to say, I needed to read this.........you are an inspiration.......Good luck, but I dont think you need it....your your own good luck charm.God Bless
bee40
 
Posts: 15
Joined: Sun Jun 07, 2009 8:15 pm

Re: Still winning this uphill battle

Postby BabyHead » Tue Jun 28, 2011 7:52 pm

Oh, but I do need it...we all do and the more we spread..."good luck", the better...I tried to log on when I saw you were on-line to catch up with you...but, I was too slow & forgot my password...day late...anyway, I hope your not doing as badly as you could be??? Thanks for reading my post, and your kind words...God bless you too...if there's one thing I have gained since my dx, it is FAITH...I am doing this well for a reason...maybe it's to show others it can be done??? Maybe it's to show "how" it can be done...either way I will win & share the rewards!!
BabyHead
 
Posts: 6
Joined: Sat Apr 18, 2009 8:18 pm


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