caregivers

[Guest guest]

Judy, we have a link to the Nat. Family Caregivers Assoc.

There is much useful & comforting info there.

http://www.nfcacares.org/

Ramblin' Rose

Moderator

From: tiodaat@...Reply-To: Neurosarcoidosis To: Neurosarcoidosis Subject: Re: MethotrexateDate: Mon, 12 Feb 2007 22:51:53 EST

Judy,I know how hard this is, both on you and your husband. There are several sites for "caregivers" where he could go and get some support also. Also, if it's ok with you-- he is welcome on our site. We've had and still have several caregivers that actively participate. I'm glad that he can tell you his fears-- and that you can talk about this.What I'd like you to try is a good calcium supplement- and see if putting back some of the calcium that the prednisone is leaching from your bones helps with that pain. For me, it truly helped.Do you have hypercalcuria or hypercalcemia?That would be the only reason not to take a supplement. I know prior to starting the Remicade-- that my bone pain was so much worse. I did find that with the supplement, that it backed down somewhat.Methotrexate will be something that you want to take with food, and it will make you tired, maybe feel like you've got a touch of the flu. The maximum dose they use is 15mg a week, and if you get the shots instead of the tablets, it will bypass your liver and so you won't have the liver toxicity buildup. Your MD's should do a CBC and Liver Function Test monthly to make sure you aren't getting toxic. Most of us haven't had that problem, but like I say-- the shots will bypass that problem. Your hubby sounds like a great guy-- I know that for all of us, the thought of having to have someone take care of our personal hygiene is humbling-- so say the least. I had a friend that just recently passed from MS-- and I have to tell you-- she had such a great attitude about all these issues. It may not be what we dreamed of -- and most of us are in our 40's and 50's-- so we all thought we'd not be dealing with these things until we were 80 and senile. It sure sucks. You may want to get a copy of Piburns book-- ONE MANS J0URNEY ALONGSIDE HIS CHRONICALLY ILL WIFE. Many of us have read it, and I don't know anyone that didn't get some insight into chronic illness. If your husband continues to have difficulty dealing with your illness- you might want to suggest he see the Md, sometimes our caregivers develop depression that can be helped with a mild antidepressant. It can truly help.Love to you,TracieNS Co-owner/moderator

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