Re: Seasonal flare

[Guest guest]

One thing that you'll all get to know about me is that I preach hydration. What I notice in myself, as well as my family-- is that we all slow down how much we drink in the way of water and decaf teas this time of year. Since it's cooler-- we don't think about that extra glass of water. Since we run a constant low grade fever all the time-- with just the systemic inflammation that goes on with sarc-- we sit on the edge of constant dehydration.

Someone had said they deal with bladder control issues, so they try not to drink too much. The last two years, I've started having problems with that issue, and what I discovered is that the more dehydrated I am, the more problem I have with bladder control. My hands and feet swell, they are the "natural" place for fluids to sit when you are dehydrated. Your body has to go into survival mode-- and so it stashes fluids in places it doesn't belong.

If you can put up with the bladder issues for a week or so, while you get back into drinking enough fluids to not be in survival mode; the first couple of days, your hands and feet will swell even more, then your body realizes it doesn't need to operate that way. So on the 3-5th days, you'll start peeing. Alot. The swelling in your hands and feet will decrease- and those rings will finally fit comfortably. You will find that your urine is less concentrated-- lighte in color and almost without smell-- and you will find that you don't hurt near as bad as previously.

All of our joints and ligaments need to stay hydrated so that they act as cushions for our bones. Our muscles and ligaments are protected by a myelin sheath, which holds a fluid that is comprised of the vitamins and minerals and proteins and electrolytes that our muscles need to keep from spasming. (Mitch, you're welcome to step in and explain this if you'd like.) If this balance is off in the least little bit-- we get more spasms-- and more pain.

Once your body relaxes and realizes that it's not going to have to put water into storage-- your kidneys, liver and bladder can all start working correctly-- and with the Kegel exercises-- you will get back some of that bladder control.

If you hvae been dehydrated for an extended period of time, you will have some rebound from getting the electrolytes back into balance-- in the way of sore muscles or ligaments. This is because you are washing out the toxins that have been laying in these places. Milk Thistle capsules or tea (again-- the health food store will have it on hand) as well as Vit C - will help with both the detox and getting your liver back into shape.

I can't begin to tell you how much better my pain levels are when I'm on board with my own issues of hydration. If I want to go into a pain cycle-- I just have to cut back on my fluids. Even with the severely advanced sarcoidosis that now effects my nerves (small nerve fibre neuropathy where my skin hurts with just the air touching it) Stage 4 pulmonary sarc with pulmonary hypertension and 3 heart valves involved-- if I follow my own advice-- I can get away from using pain meds and go with Motrin 800mg and Flexeril and Plaquenil daily and be comfortable. Yes, the Remicade and Methotrexate help so that I have to use the ones I listed-- but I'm not on opiods-- for that I'm truly grateful.

So, when you read this-- read it completely, then go microwave a cup of your favorite tea-- and reread will you enjoy that cup of tea.

Bottoms up,

Tracie

NS Co-owner/moderator

To: Neurosarcoidosis Sent: Wed, November 11, 2009 3:09:07 PMSubject: Re: Check in time

Is the flare up that seems to be affecting us all related to the seasonal change?...is there something that can be done to lessen this?

From: tracie feldhaus <tiodaat2001@ yahoo.com>Subject: Check in timeTo: neurosarcoidosis@ yahoogroups. comDate: Saturday, November 7, 2009, 8:48 PM

Wow-- the group is really quiet! Really quiet! What is going on out there-- are you all as wiped out as I am? This last week, I've had something to do everyday, and I'm enjoying my Saturday hanging out in my jammies. I hope that when gets home, he decides that we don't have t go anywhere.

I know we've gotten quite a few new members this last couple of weeks, so I hope you've found the MESSAGE ARCHIVES AND LINKS section of our wonderful site-- so that if you've got some questions- you are finding answers. We do have alot of information there, that you can use and take to your doctors.

For some reason, the moderators and Darlene and I are all exhausted-- from flares of our sarcoidosis- - and that makes it hard on all of us.

Please, if you've got questions or concerns ---ask. If we post publically on this site, your questions are the same ones that everyone else has-- so we are able to use this forum to reach alot of people at once. (More than 600 now!) Don't be shy, we're here and the mods and owners are checking multiple times a day-- so that you aren't overlooked.

Take care,

Tracie

NS Co-owner/moderator