Re: [SPAM] Re: books about neurosarcoidosis

[Guest guest]

I know what you mean. I got all the records from ALL the doctors I have been to so I could try to learn more about the disease. I sat down and began to read-----then I got a book telling me the definitions of the words I was reading. I still don't understand anything. All I want to know is How I got it.

What it is and what it is doing in my body. I want to know what each med I take (there are 23) does and which part of the body it is taking care of. Why my right side is so much worse than my left. Why some days I can't see out of my right eye and why in the Hell I can't walk without falling over. I use a walker and can only go about 12 feet before I get tired.

I guess this is one of those days I just feel like sitting crying, and then yelling and throwing things while yelling WHY ME!!!!!

So if anyone does find books that the regular person can read and understand please pass it on. I only get gibberish from the medical community. Like being a Certified Nursing Assistant I should know all those 50 cent words.

Ok Ok I guess I feel a little better.

Another day has passed and I am still alive. I should be thankful I guess.

Keep smiling and rock on.

Jackie

From: karen phillips

To: Neurosarcoidosis

Sent: Wednesday, November 14, 2007 3:57 AM

Subject: [sPAM] Re: books about neurosarcoidosis

Tracie,

Thanks i will check the posts.. 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 at this moment even though i have had this for several years i feel like it is my first day on the block. That some where there is some thing that i don't know that could maybe help keep me going just a little longer. Sounds silly i know but, i think that's what i am looking for. My Neuro is wonderful but, i am the only person she is treating with my disease. I feel like i need to know every thing i can so i can help her help me. I guess i am looking for someone like you who will put all of the things we know and don't know in one big book instead of a 1/4 of a paragraph in 13 different medical books. My sarcoids started in my brain and they say that is the rarest... it must be because it took them 7 years to figure it out. They worked dilligently and hard but, like you said it is very rare.

Thanks for what your doing, your doing what i talked about, some thing to make it better for the next person who has this disease so maybe their life will be a little easier. I am keeping a journal of what happened,all of the misdiagnoses and meds that i have tried and what happended hoping that someone will have it a little easier. I am also sharing the facts, that i know, no opinions with anyone who doesnt know. Hoping that i can help the mext person.

Thanks for your reply,

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[Guest guest]

I have NS also. It too started in my brain and I am the only one in this area who has it. I understand truly what you are going through. I have a wonderful PCP, Ruhmotoligest, Neurologist, and all the rest. I take so much meds I am feeling like a lab. animal. lol Yes it is rare and wouldn't you know I would get it.

I too am keeping a journal of all that has happened and the mistakes we all have made.

In 05, just before Christmas I was told I had a sinus infection, then a couple other infections. Even en Bells Palsy and a Stroke. On Feb 27 of 06 I was asked to come to Madison University Hospt. I was poked, prodded, had so many spinal taps, biopsies and pictures taken. After 30 days I was all but dead ----really----. I was sent to the Nursing Home to die. My family and I insisted on going to the place I worked at until I got sick. I received the best care and my friends/co-workers gave me the best care. My sister insisted on my getting therapy. Physical, To and mental. She pushed me and my friends pushed me until I got mad enough to take control of my life and I worked my butt of. In Aug. of that year I was told to go home and do what I could. There was no more they could help me with.

I have been in PT all along, and now am doing water exercise. I can walk, with a walker, I can do all my own cares and things ,most anyway, around the house. This last week I started to drive again. I am sure I am going to have my car adjusted. Hey I just bought it a week before I got sick. What a coincidence huh?

So If I can come back from near death and drs. giving up on me anything can happen. I still see the same drs because they are the only ones in my area. They have learned a lot from me and about me since we all met. And they keep learning and trying.

I am no way back to where I was and know I will never be but when I think Why me???? I think Why not???!!!

I hope your support at home, in family and with your phycians are there for you like mine. Some days stink and some days are great. All days I thank God he made me strong enough to fight so I can be here for my Grandkids.

I got a letter from the 2 granddaughters the other day, they are 10 and 11. It said and I quote "Gramma Mac. We don't care if you are in a wheel chair, we are just so happy you are here to tell us we are special and love us. Don't ever think you are not needed." That out of 2 young ladies made me proud and happy. I will continue to fight.

Thank you for putting up with my rantings.

I really am thankful for this group, they understand what we are all going through. God Bless you all.

Jackie Please excuse the spelling.

[sPAM] Re: books about neurosarcoidosis

Tracie,

Thanks i will check the posts.. 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 at this moment even though i have had this for several years i feel like it is my first day on the block. That some where there is some thing that i don't know that could maybe help keep me going just a little longer. Sounds silly i know but, i think that's what i am looking for. My Neuro is wonderful but, i am the only person she is treating with my disease. I feel like i need to know every thing i can so i can help her help me. I guess i am looking for someone like you who will put all of the things we know and don't know in one big book instead of a 1/4 of a paragraph in 13 different medical books. My sarcoids started in my brain and they say that is the rarest... it must be because it took them 7 years to figure it out. They worked dilligently and hard but, like you said it is very rare.

Thanks for what your doing, your doing what i talked about, some thing to make it better for the next person who has this disease so maybe their life will be a little easier. I am keeping a journal of what happened,all of the misdiagnoses and meds that i have tried and what happended hoping that someone will have it a little easier. I am also sharing the facts, that i know, no opinions with anyone who doesnt know. Hoping that i can help the mext person.

Thanks for your reply,

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