Thursday, May 3, 2012

Self confession

It has been a year since I last blogged. In the beginning my reasons for not blogging was I had appts, no energy, was in too pain and the list goes on. These same reasons became excuses. I still have a constant schedule of appts, always suffer from extreme pain which causes a lack of sleep and therefore a lack of energy. We adopted Parker (our Jack Russell) last May, which gave me another reason to avoid writing about my lack of recovery.

I now realize that I was avoiding continuing my blog because writing that my recovery is considered non-successful makes it more real. I have been able to talk about it with others but talking about it is very different than writing it. For example, my employer has us create development plans every year and submit them. If we simply talked about our goals, they can easily be ignored. However, if they are written down, we must face them.

In the past year I have seen countless Drs for 2nd, 3rd, 4th, 5th opinions, hoping someone would say the magic words of "we know why you are experiencing this pain and it's going to go away." I couldn't accept the "I don't know" "This is your new normal and it's never going to go away" "The reason why doesn't matter, the plan to handle it does" The reason doesn't matter???? How could it not matter??? Isn't finding the reason the key to the proper pain management plan?? If they don't know why, how can they say it's forever???

The last Dr opinion I received was hard to take but at least I got an explanation. My pain is caused by Myofascial Chronic Pain disorder, a straight neck (instead of naturally curved), buldging/dehydrated discs and anular tear in my neck, and the damage that Syringomyelia does to the central nervous system.  I am learning to accept this and try to be thankful that at least I finally got an explanation. When you are healthy, you take little things like that for granted, when you aren't, you beg for the simple things in life.

I am sure some of you can relate to this post, whether you have Chiari or Syringomyelia or something else that changed your life forever. I believe in miracles and healing, but this will forever change my life, regardless of how I feel on any level. Chiari and Syringomyelia do not define me but they certainly affect every aspect of my life. It is how I adapt and find my new normal, that makes the real difference in my recovery. 

1 comment:

  1. Dear Jenn, I'm glad to have met you on Facebook, since we share the same diagnosis (except from your MCPD) I know what you mean by writing about how these diagnoses affects our lives every day and minute. It doesn't matter what others say or guess -since doctors seems to say different, and have different experience it's no wonder we like our life afraid. But thanks to great friends and their experience, I'm going to really LIVE my life the best I can, no matter pain or bad results after the surgery. Since we all can die anytime, I'm gonna try my best to live like the old sayin "Live every day like its your last" ;-) I hope you will find some peace although you're in pain every day. If google translate works, welcome to my story ;-) Swedish hugs!