It's official

[Guest guest]

Just back from the Dr's office. It's official...neuro sarcoid. The

Doc started the conversation like I already knew the diagnosis…guess

he was somewhat surprised that I hadn't been told by the

dermatologist who did the biopsy…probably because she actually told

me that I had non-caseating granulomas (correct) but sarcoid

granulomas were caseating (oops!). Just goes to show, everyone

makes mistakes every now & again and Drs are no different. Glad I

took it upon myself to schedule a follow up with my primary.

So, after 14+ long years of searching for an answer, I finally come

to know the beast by name. I'll take some comfort in the thought

that I wasn't off my rocker for all that time...the illness is

real. Trust me when I say that there were times...especially after

each time I heard " your tests were all normal " ... I truly began to

question my own sanity.

So, one chapter in life closes while another opens. Tomorrow brings

another adventure as I'm off to the ophthalmologist for an

evaluation of my eyes. I'd be lying if I said I wasn't anxious…

heck, I'd be lying if I didn't admit that I was shaking in my boots

as my vision has degraded drastically since an event 4 years ago

which left me diplopic…OK, enough of that…I can't change the past

but I can live for each tomorrow…

I'd like to thank you all for sharing what you have learned, for the

compassion in your words, and for helping me know that I am not

alone in this. May you find peace during the holiday season and

hope in the new year…Tony

[Guest guest]

Tony,

Your words really touched me. and you have said once again, what all of us have or are experiencing. It is sad that we end up questioning our sanity-- because our tests are "normal."

What this really says is that numbers mean squat, and sometimes we really have to fight for ourself in order to get the care -and respect- we need to go on with our life.

I do want to assure you that there is treatment. We don't yet have a cause or a cure-- but with the journey and recognition that we are creating by being willing to continue our fight, prayerfully- we will find the answers - and future generations won't have to walk thru the flames to get treatment.

Know that as you go down this path, that we are here, we are still fighting, and no one here is giving up. We all want our life to be as rewarding as it can, even in the face of chronic illness.

There is a book that I'll recommend that you and your wife read together. It's called ONE MANS JOURNEY ALONGSIDE HIS CHRONICALLY ILL WIFE. The author is Piburn. It was such a gift for both my husband and me.

Do pick it up either online or at the bookstore.

Wishing you many blessings,

Tracie

NS Co-owner/moderator

[Guest guest]

I looked for the book online, found this and wanted to share it with everyone. This is from Amazon.com used books. The full title is Beyond Chaos, One Man's Journey Alongside His Chronically Ill Wife. 2.42 + $3.49shipping LOW ITEM PRICE Used - Like New Seller: goldiekay Rating:99% positive over the past 12 months (895 ratings.) 3031 lifetime ratings. Shipping: In Stock. Ships from AZ, United States Expedited shipping available. See shipping rates. Comments: Clean, tight binding, no markings. Excellent condition. Ships immediately. Buy with confidence from sellers with five fullly filled gold stars. (« less ) Judy in Pa