Re: Re: books about neurosarcoidosis

[Guest guest]

I guess i am looking for answers. I feel like i need and want to know every thing i can about this disease so i can deal with what comes. And

,

I so totally understand. Like you, I'm just trying to help put the puzzle pieces together in a format that we can use. I do like the brochures at FSR-- they are the exact wording I used way back when I first joined, and some of what the original founder of this site put together.

I do believe they've put together the best- and it is still just for the layman that wants to say that sarc is a multi-system autoimmune disease that changes the structure of our organs so they don't work like they should. YADA YADA

We all know the story-- it starts every article we've ever opened and is straight from the Merck Manual- around the early 1950's.

One of the immediate reactions I had reading your post is that you are in that wonderful place of BARGAINING. In Kubler-Ross-- 5 STAGES OF GRIEVING-- we find ourself dealing with the grief of chronic illness.

We get the diagnosis, and immediately go into DENIAL. This can't be happening to me-- I eat right , exercise, work, get the kids to soccer, and on and on.

Next we end up in BARGAINING. We look under every nook and crany to find answers. We seek out numerous doctors, tests, xrays, mri's lab studies, EEG's EKG's, EMG's, Neuropsych testing, herbs, vitamins, minerals, snake oil-- you get the picture. We see psychologists, pyschiatrists, MD's, PhDs, Chiropractors, Acupuncturists, Naturopaths, and more.

From this point, we get ANGRY. No one has all the answers, and each of the providers-- especially in our wonderful world of Western Medicine-- a doctor for each body part-- and they aren't going to agree or even talk to the others-- so we are out big bucks-- and not much better. We do weigh more-- the prednisone they've treated us with has made that possible (ok, insert cynisym) and we are still sick.

So, what next-- DEPRESSION kicks in. Yep, we end up depressed because we don't have the answers, we're financially strapped, physically and emotionally exhausted, and we are dealing with a fatigue that makes us realize that getting the worst possible case of the flu would be a step up. At least the fatigue from that will go away. Our brain chemistry is screwed up by the meds we're on, our hormones may be seriously screwed up from the sarcoidosis and the chronic systemic inflammation that invades every inch of our being. Our jobs, careers, relationships, marriages, social life and friendships have all been forceably redefined. We will have to fight with our insurance carriers and our MD's to get the meds that might help. After all, they aren't FDA approved for "sarcoidosis-- the benign, nothing to it, ignore it, in 2 years you'll never know you had it disease." Oh, and you've not slept for months, and those brain chemicals that regulate mood are out of balance, and you are depressed!!

That being said-- you come to a place of ACCEPTANCE. This is where we finally say- wow, I've done XYZ and I've seen every guru and I'm still sick with sarcoidosis. We finally allow ourself to take that deep breath, and slow down. We start learning to accept that we have to pace ourself, and that we won't be at all the games, and we won't be at church each weekend and we won't be the one to do Thanksgiving and we realize that we have to cancel that lunch date. We don't like it-- but we do what we have to do.

The silver lining-- we go in and out of all these states multiple times over, and each time we re-enter where we've been before, we can choose to take what we learned the last time we were there-- how to handle these issues, again. And that's ok. It is ok that we keep looking for more answers and a better idea on how to deal with what the future might bring.

So-- ask the questions, and I'll try to put some more stuff in one spot that says if this happens, then.... Rose, is it already in your folder????

Blessings to us all,

Tracie

NS Co-owner/moderator

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