Tuesday, August 6, 2013

Living on a prayer...

We're going to see the Wizard!
 I haven't written for a while, life has gotten difficult and to be honest, I just forgot. I went to see Dr. Grubb in Toledo. If you have POTS and you are even considering it, go. It is worth the trip, the expenses to stay nearby, and he is truly amazing. At my appointment he explained to be the cause of my particular case of POTS is actually something different, a connective tissue disease called Ehlers-Danlos Syndrome or EDS. It is a connective tissue disease that has several types, my type is hyper mobility. With hyper mobile joints, tendons, ligaments, and everything else, it causes a whole lot of symptoms that were previously unexplained. I will leave you to research that on your own, but if you have adult onset POTS and EDS, your chances are a lot less likely that you will ever get completely better. My research suggested this while i was reading medical journals recently, and my doctor confirmed my fears, I probably will never get better. I had that idea in the back of my mind, but I kept hoping that one day I would outgrow it or spontaneously recover. Wouldn't that be a great day. My doctor told me that she thinks I need to take some time to grieve the life I expected and the life I had and work towards acceptance of my POTS and EDS as my new normal. I'm not ready to do that. To me thats giving up.
New Pacemaker
New Pacemaker scar...
 While I understand that this may never get better, I still have hopes that if I get a service dog, I won't be stuck in the condition I'm in right now. I won't be fainting all the time because the dog will alert me so I can lie down. I won't need to wear a helmet all the time, because I won't be fainting. I won't be getting constant concussions and dealing with the injuries from fainting, because I won't be fainting. I won't require a wheelchair as much, because the dog will help with my fatigue and will prevent me from fainting. I guess I have a lot of eggs in this one basket, but its the only thing we have left to try.
 My new pacemaker is pacing 60% of the time (I'm in bed the rest so it doesn't need to pace). We had hopes after my surgery that this new Evia Pacemaker by Biotronik would work, but I'm still fainting. We've tried all the drugs that are used for POTS. We have tried the high salt diet, the high liquids, the gatorade, the weight gain, all to prevent me from fainting and all its done is make me gain weight. We're at the end of the line for options as far as I know. I should find out soon if I will get a dog for the next class, crossing our fingers and saying lots of prayers. I'm not ready to grieve the life I used to have. I'm ready to get a partner who will help me live a life I'll love.