The life you want vs the life you get...

I know..... many people have written about their own lives and stuff like this.... what your life is about, what happens to you.... why... why... why.... and all that....

I'm making my lists, making goals and not taking this proverbially laying down.

I also have a sneaky feeling my new medications are making me more daring or more opinionated....?  I have tried as many medications as I have seen doctors !

I have been told by specialists I have Chiari, I don't have "real" Chiari; I have syringomyelia, I don't have syringomyelia, I have hydromyelia instead....

I finally just got fed up with it and accepted the heavy duty drugs to help with the pain, the doofiness with the drugs is just going to have to be the "new me"....  :)

I also sent my MRI information to two renowned specialists in Syringomyelia and Chiari as well as Tarlov cyst (as I'm lucky enough to have one of those, too).

I wish I had a different life, but then what would I wish for?  Everyone has their own problems.  I used to live on Miami Beach back in the late 1980s, early 1990s and I worked for a very well-respected bank and ended up making money deliveries to the weathy people in the condos who lived within walking distance of the bank..... I met a woman, who got $1500 a week from her account (think of this , back in 1987? WOW)... well, she was the most miserable thing I have ever seen, so that proved to me that money isn't everything and I think I needed to learn that lesson when I did.

I didn't pursue the education that I should have and now I am nothing and do nothing, waiting to be approved for disability.  That  makes me feel like a huge failure, that I did "nothing" with my life... but how does one quantify nothing?  What makes a person a success?  What makes them a failure?

In my case, moving straight down to Miami Beach 1 week after graduating high school really didn't give me much of a chance of success.... there was so much going on and coming from a very very very small town, it was overwhelming!!!   I went to several different colleges (with promises from my father that he would pay).... and that never happened... so I did community colleges, adult education centers... etc.

Moving back home 8 years later to start over didn't help.

At any rate, I'm here now, feeling like my life is over but I know it's not.  I was telling a dear friend that she has to now re-invent herself and I have to do that, too.  It's going to be frikin hard at 41!!!!!!!!!

The combination of pain medication I'm on now seems to help so that makes me happy..... but being on heavy-duty drugs does not.

There is alot of stuff rolling around in my head... and having a chronic illness only brings these things to the forefront and into clearer focus... like someone knowing they are going to die and saying, "Gee, what did I DO with my life?".... 

I think that is uniquely human to want to DO something with our lives, to want to make an impression (duh, or we wouldn't be human, would we?).

To be continued.....

Long over-due update

I always thought I was a strong person.... and then my symtoms started to get the better of me.   I don't like to refer to myself in the past tense, but that is what I do now when I refer to my "old" life.

I was an avid bike rider, riding up to 30 miles a day on my bike around town.  I loved kayaking, hiking, snowshoeing and anything outdoors.  You couldn't keep me in the house!

My symptoms started around the time after I had surgery to repair a crushed clavicle with right arm symptoms that I attributed to my accident and surgery.  These symptoms never really went away and only seemed to intensify and now I have a constellation of symptoms that seems to never go away.

I have been to over 30 doctors for my condition and I am warned by my PCP (who I feel is clueless) that if I keep going to doctors, I will find someone willing to operate on me and possibly make me worse.  What I am doing is looking for the doctor who is going to tell me what is causing my symptoms and what I can do to help myself.   I ALREADY know what it is... the CM and SM of course.. but no one wants to tell me straight out that either of these is causing any issues..... this condition is so rare that many doctors are clueless.  Of course, leave it to me to get something off the wall like this!!!!

I have a very difficult time walking, standing, wearing socks and shoes.  My feet and legs are very painful along with horrible muscle spasms and spasticity.  I would think I had MS with these crazy things, but I was assured that I do not... at this time, I am unsure if I believe that.

My syrinx (syringomyelia) runs from about C4 to the end of my spinal cord and varies in width from 4 mm to 2 mm.  My brain herniation is about 3 mm (Arnold-Chiari) at this time as diagnosed from the specialists in NY, at The Chiari Institute.  I am deeply disappointed in this facility and I don't recommend them at this point.  However they have helped thousands of patients (to the best of my knowledge, at least they say they have) and I'm not going to say anymore than that.

I also have degenerative disc disease in my entire spinal cord.. which is a huge shock to me.  I was also told that I have a Tarlov cyst at C7-T1, which will be evaluated when I go to Tufts in Boston at the end of September.

I am really excited about this upcoming trip to Boston....I have got my fingers crossed that they will be able to help me.

Currently I have episodes of dizziness so severe that I can't get off the couch and nausea to the point that I am not eating very well, yet the medicine I am on seems to be causing me to gain weight..... which if I was healthy, I would not be on any medication... so this just adds insult to injury.

I have an appointment today with a neurologist so I'm bringing my symptom list and my MRI reports from last year to see what he has to say about it.

I will do better at keeping updated, but my main blog is on myspace.

Been a long time!

So, While I'm still trying to incorporate Humor every day.... there is now a glitch in the works. I did end up going to NY, The Chiari Institute Jan 09, and was told that yes, I have an extensive syrinx throughout most of my spinal cord. (cyst in my spinal cord, along with a hemangioma at T2 and Arnold-Chiari malformation).

I had never heard of this until last year! (when I was diagnosed).

I am just so distraught, angry, scared, and disappointed that my life has turned out this way.

The myriad of symptoms I have would fill a book; as well as the feelings that go along with them.

I am resigned to the fact that the rest of my life will be spent dealing with constant pain.

I cannot possibly describe that in terms that will convey understanding to people who have not experienced some sort of trauma in their lives.

There is a very real possibility that I will not be able to walk at some point which terrifies me. I am also concerned about the hemangioma I have in my T2 vertebra. This can burst causing a whole terrible range of problems, even more so, this particular area has nerves that run through it that regulate my heart/lungs.

While none of us ever knows the future ..... we usually can plan it with a small sense of security that all will be well.....

I would also like to add that since I was diagnosed with this condition, 99% of my family members do not speak to me. Not only am I dealing with this condition, I am ALONE dealing with this condition. Which translates to feeling like nothing matters any more.

I have made a few really dear friends from the support group at ASAP.org. Great community as it was when I joined last year.

Syringomyelia is rare; there are people that have it and don't know it and they have no symptoms. There are people like me who have it and are miserable. There are people who have it and it does not bother them that much...

I am not one of the lucky ones.