Re: TAking care of yourself

[Guest guest]

i am looking for answers about how long i might have tobe able to take care of myself and if there is any thing i can do to beas well as i can be. I have visited this plan several times and realizethat there are only so many things i can do

,

A new granddaughter! Awesome! I know that my reaction when my niece had her twins is that I want my son to find a wonderful woman and make grandbabies for us! It seems to be a long ways off..

As for what the process will be for you-- what I can share is that most of us have a similar path, but it's different for each of us.

Unlike MS, the demilination happens at the end of our nerves and generally goes up to the spine. So we get the neuropathy and small nerve fiber neuropathy where our skin may feel like it's on fire-- and just the air is touching it.

Some of us end up with short-term memory loss. For me, some of it was caused by the need to take Ambien daily for more than a year on end. Weaning off it was no party. I still struggle with it-- but it seems to be a bit better with the Plaquenil and Remicade. We learn to adapt, carry Dayplanners, post it notes on the steering wheel of the car, etc. Others can share their ideas, and if you incorporate them now, maybe they'll be habit by the time you need them.

Some of us have ended up with paralysis-- leg weakness more than arm-- but I know for me, I ended up without feeling in my arms and hands-- so that I thought I'd have ahold of something, only to find out I didn't. So you learn to adapt and really watch when you pick something up-- especially a hot cup of coffee or tea. I also have had to learn to pay attention when I get into the shower. I have lost a lot of sensation in my feet- and so I don't sense when the water is too hot, until I'm in it!

Several years ago, when I first relapsed with multisystem sarc, my friends explained in their letters to SSDI-- that it was like I had early onset Alzheimers. I would tell them the same thing over and over. I'm think I'm better-- but it's not like the days when I would be able to handle so many different things at once. Maybe it's better because I've learned to adapt.

I explain this disease to people as being similar to MS, Peripheral Neuropathy, Dementia, and Rheumatoid Arthritis all wrapped in one. So to prepare for the future-- I've learned to monitor the things I eat, and stay away from the stuff that causes increased inflammation.

Dairy foods, sugars, dehydration are the biggest insults to our systems. So you make an adjustment to these things- one at a time, and see if you feel better. If cutting out dairy doesn't seem to help with your joint pain-- then keep it in your diet. If you hurt after that candy bar, or if your neuropathy is worse after pancakes for breakfast-- you'll know that sugar plays a part in your pain. Dehydration is another huge issue-- we need the extra to keep the muscles and ligaments and vertabrae floating in the correct fluids-- so we have to stay hydrated. Chronic inflammation comes with a daily low grade fever-- and that keeps us slightly dehydrated all the time. For a week, write down what you eat, drink and what effects you have. If you hurt after that beer, or wine-- then cut it back- see if you feel better. If you hurt after that pot of coffee, go decaf, or cut it back-- and see what happens.

this is the approach I've taken to dealing with my pain (along with meditation and guided relaxation) and it has helped tremendously. I highly recommend it. Your MD's won't tell you to do this-- they don't have time--and haven't had to face too many of these issues.

I do hope this helps,

Tracie

NS Co-owner/moderatorSee what's new at AOL.com and Make AOL Your Homepage.

[Guest guest]

Hi Tracie,

I saw my neurologist when getting my prednisone IV last week as his associate doctor was off. My neurologist (Dr. Khatri) goes and talks around the world about MS and runs the regional medical center for MS and other neurological disorders here in Milwaukee. He is having another conference this Saturday relaying the current information about MS and bladder information at this event. He told me he thought it would be good for me to attend because he said NS is just like MS in symptoms. It is hard to hear that even though we explain to people that it is like MS so they understand what we are going through. But, when your doctor tells you face to face it just hits you differently and hard to handle. If I learn anything new I will certainly share it with the group as it is this Saturday from 9 to 12 noon and is free. The last one he had about 2 months ago he did it on spiritual healing. I did not attend that one but I think I will attend in the future. They are also conducting yoga classes one of which is being done in a chair and another one just on the floor which I might start to go to those. I could not figure out when I tried yoga last year why I could not balance but that was because I was starting to come down with NS and did not realize it as you all know.

Kat

See what's new at AOL.com and Make AOL Your Homepage.

[Guest guest]

My neurologist (Dr. Khatri) goes and talks around the world about MS and runs the regional medical center for MS and other neurological disorders here in Milwaukee

Kat

I'm envious that you'll be able to be at his seminar. I can't stress enough that we learn as much as possible about autoimmune diseases, as this will give us a "heads up" on how we deal with the changes and challenges that come up for us.

I'm also glad that your neuro understands how similar NS and MS are. Actually, if you search for autoimmune diseases, all of them-- Rheumatoid Arthritis, MS, Lupus, Diabetes- all have similar symptoms. That is why they insist on ruling out all the others before they give us the NS diagnosis. Sadly, many of us end up with more than one of the conditions.

For me, it has been so empowering to find out what foods, exercise, vitamins and minerals I can add to my regime that have given me a higher quality of life. I know I end up on a soapbox at time-- but I know that I'm better because of the help I've gotten from primarily my chiropractor on these issues. Her secondary speciality is nutrition. I know she's had excellent success in controlling her FM because of the dietary changes she's made.

We'll all be looking forward to hearing about the seminar, so thank you in advance for sharing!

Blessings,

Tracie

NS Co-owner/moderatorSee what's new at AOL.com and Make AOL Your Homepage.