Monday, September 21, 2009

Johns Hopkins...Here I Come...Again!

Unhappy anniversary to me.

It will be five years this week that I left the highly stressful daily life of the corporate world and went out on disability. FIVE YEARS.

It's bad enough what that fact has been doing to my head all of these years, but five years on disability...ME...the work-a-holic for more than 25 years? Ugh.

And to top that off, I really don't know how I am supposed to feel now with my latest news. Numb? Depressed? Anxious? Angry? Confused? Digusted?

That basically describes the feelings I have been experiencing since one of the top neurologists at Johns Hopkins said, "there is no evidence now or in the past to support a diagnosis of myositis."

For more than two years, I have been receiving chemotherapy to treat my "muscle disease." And to find out that I never had a muscle disease is indescribable.

As I wrote briefly in my last blog post, there is a suggestion of a possible autoimmune process. An elevated anti-proteinase 3 antibodies level and C-ANCA suggest a possible Wegeners.

Given the likeihood of an autoimmune process, as well as the fact that I had some improvement with immunosuppressant therapy, I am heading back down to Johns Hopkins for a consult with the top vasculitis physician in the United States!

To top it off, my body is starting to break down at an extremely rapid rate. I am getting weak, very shakey and yesterday my one leg gave out on me in front of my son while we were standing outside of our house. He immediately yelled to make sure I was alright. I guess it shook me up more than I realized...I couldn't calm down for quite some time.

It is six months since my last chemotherapy treatment, and obviously I need some type of treatment. But what? Research on vasculitis/Wegener's basically discusses immunosuppressants, so that may be the route. I just want to find out "what I have" so that I can continue my fight to live.

My schoolwork has been on hold since late March...and I am so close to the finish line. My doctorate degree is in sight...all I need is a clear head and a few months to complete it.

So I am off to the Johns Hopkins Bayview Medical Center Vasculitis Center to find out if they can determine a new diagnosis and, most importantly, a new treatment plan. In between the deep depression and crying bouts, I have realized that I am a truly strong woman who can continue this fight, no matter what. Sure, I was knocked down for a few weeks, but I am up again and ready to take on whatever I need to face.

So bring it on...I am ready.

"L'Shanah Tova. May we all immediately be inscribed and sealed for a Good Year and for a Good and Peaceful Life." Amen.

4 Comments:

Blogger Sharon said...

i say a prayer for you every day and will continue to do so until i forget the words. hopefully you will get the answers you need this week.
love ya kid.
sharon

4:26 PM  
Blogger Rich Freundlich said...

This comment has been removed by the author.

4:33 PM  
Blogger Rich Freundlich said...

How should you feel? I think every emotion you described is accurate and valid. I'm (we're) with you all the way Bev and you're always in our prayers. All my love! Rich.

4:34 PM  
Anonymous Anonymous said...

Please give us an update. We are praying for you and care about what is happening. God Bless you.

10:27 PM  

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