Re: DRYNESS! Pretty Md visit

[Guest guest]

says the reason my legs are swollen so bad is because I'm so dry.... "OH MY GOODNESS" you don't get edema from being dry, its due to fluid build up..

,

I think what she feels is happening is that if you are dehydrated--then your body goes into salvation mode-- and keeps the fluids you drink in your extremities--generally hands and feet (fingers and toes)-- so that it will have it when you aren't getting enough fluids down.

You know how when you get into that bag of chips, and the next day- you're hands are all swollen --well this is her line of thought.

My problem with that is that with us, when our hearts become involved with the sarcoidosis, along with our livers, kidneys and lungs-- we just don't process the fluids like we should.

Also, if you have lymphatic involvement, then the lymphnodes can't clear the fluids either.

So-- you've got a couple of things going on. First is dehydration! Yep-- I said it. Our blood volumes and tests show up goofy if we're dehydrated. There just isn't enough water to help the body generate all the blood cells we need. So it can show up as an electrolyte inbalance.

Second is your heart and lungs are working overtime to just save your vital organs. (Rapid heartbeats, or irregular heartbeats is a sign again of dehydration) Your body thinks it has to store whatever fluids you give it-- and it's doing it in your legs and feet. This is damaging the lymphnodes in those areas-- by having that fluid sit there-- it becomes septic. The lymphs are already involved in sarcoidosis- so they're scarred, and can't clear these fluids.

If your heart is over burdened-- then it can't work hard enough to clear the fluids from your extremities.

The challenge is to find the balance that works for you. If you don't like drinking water-- drink suntea's. Use decaf herbal teas-- chamomile, green tea- (mint), peppermint, MilkThistle!!!, (tablets or tea or both) to cleanse your liver and get it detoxed.

Stay away from Cokes, Pepsi or sodas. Also, if you can do fresh vegetable juices (Carrot/apple) or RiceDream Smoothies with fresh fruit and yoghurt--that would help. It doesn't require alot of work from your liver. (With juices be careful to monitor your blood sugars).

No Coffee. No caffeine. No sodas. No artificial sweetners (use a tsp of honey in your tea as it's brewing on the porch-- and it's wonderful!

Soy products are hard to digest-- so rice or almond milk is a good choice. (It tastes good too!)

Dr. Pretty needs to learn to explain herself better-- and needs a crash course in systemic sarcoidosis. Tell her you either expect her to get on board with you-- or push her ass overboard.

Unfortunately, she's not a look at the whole picture doc-- and isn't putting any of the puzzle together- and I suspect she doesn't care much right now. You deserve better.

Take my notes in with you-- you can keep the comments about pushing her ass overboard if you want-- and ask her to go over this with you.

All of what you've described is the effects of sarcoidosis messing with your heart and with your lymphs and liver.

BTW--Esterized Vit C is a great detoxifier, get 500mg tablets or powder, and go up 500mg until you get the runs, then back down to where you no longer have the runs. DRINK, DRINK, DRINK, DRINK- it will dehydrate even more if you don't.

T-- I've got a bunch of stuff in the LINKS and FILES that deal with hydration. Read up. It's an eye opener!

Love ya,

Tracie

NS Co-owner/moderator

[Guest guest]

Thanks Tracie for the information, I do feel I need an antioxidant as I use to take grape seed tablets and I did feel better while taking them.. I think little ms pretty pants is gonna run me through the mill now, her nurse has called and set me up three appointments this week, one for pulmonary functions test, once is for pulmonary rehab evaluation, a pain clinic referral because 1 lortab a day for 4 years, she can no longer write my prescription.

I tried my damndess to explain to her that I had been trying to tell her what my symptoms are and not making individual complaints, I still don't think she got it. It is a good thing that she didn't say anything out of line today though, my mom sat back in the corner with both barrels ready to fire at the first sign of her being disrespectful to me.

Listen I hope I explained the chatrooms ok, I don't want to over step my boundaries but I want everyone to know it wasn't to divide us...

Big Hugs,

T

-- Re: DRYNESS! Pretty Md visit

says the reason my legs are swollen so bad is because I'm so dry.... "OH MY GOODNESS" you don't get edema from being dry, its due to fluid build up.. ,I think what she feels is happening is that if you are dehydrated--then your body goes into salvation mode-- and keeps the fluids you drink in your extremities--generally hands and feet (fingers and toes)-- so that it will have it when you aren't getting enough fluids down.You know how when you get into that bag of chips, and the next day- you're hands are all swollen --well this is her line of thought.My problem with that is that with us, when our hearts become involved with the sarcoidosis, along with our livers, kidneys and lungs-- we just don't process the fluids like we should.Also, if you have lymphatic involvement, then the lymphnodes can't clear the fluids either. So-- you've got a couple of things going on. First is dehydration! Yep-- I said it. Our blood volumes and tests show up goofy if we're dehydrated. There just isn't enough water to help the body generate all the blood cells we need. So it can show up as an electrolyte inbalance. Second is your heart and lungs are working overtime to just save your vital organs. (Rapid heartbeats, or irregular heartbeats is a sign again of dehydration) Your body thinks it has to store whatever fluids you give it-- and it's doing it in your legs and feet. This is damaging the lymphnodes in those areas-- by having that fluid sit there-- it becomes septic. The lymphs are already involved in sarcoidosis- so they're scarred, and can't clear these fluids. If your heart is over burdened-- then it can't work hard enough to clear the fluids from your extremities. The challenge is to find the balance that works for you. If you don't like drinking water-- drink suntea's. Use decaf herbal teas-- chamomile, green tea- (mint), peppermint, MilkThistle!!!, (tablets or tea or both) to cleanse your liver and get it detoxed. Stay away from Cokes, Pepsi or sodas. Also, if you can do fresh vegetable juices (Carrot/apple) or RiceDream Smoothies with fresh fruit and yoghurt--that would help. It doesn't require alot of work from your liver. (With juices be careful to monitor your blood sugars).No Coffee. No caffeine. No sodas. No artificial sweetners (use a tsp of honey in your tea as it's brewing on the porch-- and it's wonderful! Soy products are hard to digest-- so rice or almond milk is a good choice. (It tastes good too!) Dr. Pretty needs to learn to explain herself better-- and needs a crash course in systemic sarcoidosis. Tell her you either expect her to get on board with you-- or push her ass overboard. Unfortunately, she's not a look at the whole picture doc-- and isn't putting any of the puzzle together- and I suspect she doesn't care much right now. You deserve better.Take my notes in with you-- you can keep the comments about pushing her ass overboard if you want-- and ask her to go over this with you. All of what you've described is the effects of sarcoidosis messing with your heart and with your lymphs and liver. BTW--Esterized Vit C is a great detoxifier, get 500mg tablets or powder, and go up 500mg until you get the runs, then back down to where you no longer have the runs. DRINK, DRINK, DRINK, DRINK- it will dehydrate even more if you don't. T-- I've got a bunch of stuff in the LINKS and FILES that deal with hydration. Read up. It's an eye opener!Love ya,TracieNS Co-owner/moderator