Tuesday, August 25, 2009

que sera sera

Whatever will be, will be....

How I have learned to live that way~!

Today I am going to share more health stuff. I no longer read much about my "issues". I have a forum I visit from time to time but for the most part I try hard to pretend there is nothing going on.

Every now and then I need to talk to someone so I chose you this time (you who still check in). I am past frustrated, I am numb. I can only live as if nothing is wrong until my leg or my body collapses. A little over a week ago I was told by my neurologist that he and my other neurologist (the MS specialist) feel that I have primary lateral sclerosis. Yes, I should have capitalized that but why give it any more importance?

In a way this would be better than the other stuff. However, there is no cure. Progression can be slow or fast and basically what happens is that you lose your ability to move your limbs adequately. Eventually it can affect your mouth. I won't bore you with my own physical challenges but I will say that it is already affecting me from head to toe and from time to time I have parkinson like symptoms.

My cardiologist asked if I would consider going to the Cleveland Clinic. There are a lot of them but this one is actually in Cleveland, OH. So if my insurance will pay, that is where I will go. He (cardiologist) also has me on another med and says eventually I will need even more. I have autonomic dysfunction which typically accompanies ALS (Lou Gehrigs disease) and ALS and PLS are both motor neuron diseases. As long as there is little pain and I can function "enough" then I am happy! And if that changes, I will still be happy! Happiness is a choice and I chose it!!

My life is good. I am so happy to have my wonderful children, friends and a flexible schedule. Money is very tight, sometimes I wonder how I will pay the bills but all I can do is turn it over to God and work hard. Balancing parenting, work and my own needs (and limitations) is a challenge at times but I have such great kids (yes, I am bragging) that it makes it much easier!!!

Thank you so much for visiting!

No comments: