Re: Pulmonary Hypertension.

[Guest guest]

,

Have they put you on oxygen to give your heart and lungs a break. With pulmonary hypertension-- it is so important that the heart doesn't need to send the distress signal that it's not getting enough oxygen from the lungs-- this is what causes the PH. As the lungs try to send extra blood to the heart, that primary vein from the lungs to the heart has to thicken to handle the extra blood pressure. As it thickens, from the inside becoming narrower; the chances of a clot forming on either end becomes greater.

Now, even with PH -- you can live a fairly normal, productive life. With the aid of supplemental oxygen-- even if you need a wheelchair or scooter to get around, you can be higher functioning that what is going on now.

Both the steroids and the MTX wipe out the red blood cells, creating anemias. I can't stress enough how important it is to make sure they are giving you large doses of Folic Acid-- at least 1mg daily. This is actually low even for us-- as studies now show than anti-inflamatories, ie. Ibuprofen, Motrin, Advil, Tylenol, Naproxen sodium, all lower the B vitamins in our body. Glucophage-- for blood sugar control, also creates a B12 defiency. All of the immunosuppressants deplete our B storage-- and most of us have settled on a simple food diet--- that has very little true nutritional value. So we aren't getting what we should from diet alone. Processed foods also wipe out the B's-- and guess what, when they "fortify" our foods adding back in what should be there naturally, it's not in a form we can assimilate.

It is also imperative that we learn what vitamins and minerals work together, and which ones to take later so that all we get into our body can be utilized.

Dr. "Schwarzbein's Protocol is the best book I've found that explains all this. You can often find copies in used book stores--and I know and Noble have older releases (same info) for a few bucks each.

, if you can get to a good health food store with knowledgable staff-- they can stear you in the right direction. I know first hand how much better you'll feel-- as I too am digging out of the pulm hypertension issue. My love to you,

Tracie

To: Neurosarcoidosis Sent: Tue, June 8, 2010 10:12:18 AMSubject: To everyone miss posting

Yes I miss posting also ..but it just seems one thing after another as we all know..I do not know about anyone else who is taking metho injections but mine has been increased twice and will be increased again at the end of June when i am weaned off the steriods.. but i take my shot and Saturday morning and Saterday nite i go to bed and sleep from then to Monday morning.. i get up to pee and to put down a yougart or something lite. but my body is sooooo tired and weak . so i miss one day out of the week and we all know each day to us is very special since we don't know how many we have left,

i was dxd with portal hypertention ..i just had another echo on my heart due to the pressure being up . so they think my pumunary hypertention is out of control too so waiting for my results on that. than two weeks ago i end up in the er with what i know now is a kidney stone.. it was worse than giving birth.grrrrr

than sherifs father just passed away so it has been crazy here..i am waiting for the upswing ya know

so everyone i think of you daily even though i don't get to post everyday..

many blessings to you all..

lots of love

In a message dated 6/8/2010 11:25:34 A.M. Eastern Daylight Time, tiodaat2001@ yahoo.com writes:

,

We miss you posting! Truly. This disease can bring you down, and the one thing I've found that I can control-- is whether to LIVE with this disease, or start dying.

Like the rest of you I fight to keep my spirits up. I love humor, and even a good laugh at myself-- especially when the "red train" spaghetti sauce, applesauce, issues come in.

and I both consider it an adventure-- hmm, what is Tracie really trying to say-- adventure. If he's making sphaghetti, I sure don't want to have him ask the same question 'honey, where's the spaghetti sauce? We always keep a couple of jars in the pantry cupboard-- so not sure why it's a repeat question-- but it is... LOL!

Last night I made Gazpacho. I took tomatoes, onions, celery, cucumbers, protein powder, garlic, Trader Joes low sodium vege juice (V8's competition) and we drank our dinner! The funny part was that the soup was sitting on the kitchen counter in my biggest mixing bowl-- and he asked where I'd put it! Believe me, this mixing bowl can't be missed-- so he had to admit he'd not even looked. AARGH!!!!!!! !!!!!!

I know it's tough-- crazy and we can be our own worse enemy-- or not.

Wehn we share our trials and depression and our humor-- we lift ourself out of our darkness and back to light!

Shine on my friends,

Remember, a single candle only gives off a small amount of light, but add it to another and another-- and a room, a home, a world can be lit up!

Tracie

From: "JessicAbouhamama@ aol.com" <JessicAbouhamama@ aol.com>To: Neurosarcoidosis@ yahoogroups. comSent: Tue, June 8, 2010 6:37:03 AMSubject: Nicely put tracie..

I have been so down with this ns and have not been able to post a lot lately. but have been part of this group for many years.

and we all have way to many problems to worry about someone posting something religious.. if you don't like it HIT DELETE!!!

No one should fee bad for posting something like that...

and come on who ever said it should not have been posted....don' t you have more serious things to worry about..

ok..that was my rant on this subject..

everyone have a pain free day and many blessings

from PA

In a message dated 6/7/2010 8:13:30 P.M. Eastern Daylight Time, tiodaat2001@ yahoo.com writes:

Thanks to all,

Love ya

Tracie

From: Marla Bramer <mebramer (AT) gmail (DOT) com>To: Neurosarcoidosis@ yahoogroups. comSent: Mon, June 7, 2010 9:59:19 AMSubject: Re: Atheist Holy Day-please read

Thank you Rose, yes she's had a long difficult year for sure, wish I lived closer:) It's so nice having you back too, and glad you are feeling better. much love, Marl a

On Sun, Jun 6, 2010 at 9:30 PM, Rose <mamadogrose@ hotmail.com> wrote:

Marla, you are so perceptive & have such a nice way of expressing yourself. You are absolutely right--Tracie needs & deserves a shower of love & encouragement right now!

Ramblin' RoseModerator

To: Neurosarcoidosis@ yahoogroups. comFrom: mebramer (AT) gmail (DOT) comDate: Sun, 6 Jun 2010 19:20:49 -0600Subject: Re: Atheist Holy Day-please read

I am so behind Tracie, and just want to say that we have been down this road before; of people feeling offended by someone's post, and we all decided the best thing to do is: read and delete, or don't read and delete. When discussing Religion or anything that others might take offense too, put it in the Subject line, that way anyone that doesn't want to read, or get into a certain subject, just delete it. We have tried to keep the peace, but as you see, it's wearing many of us down. We come here all of us, even Tracie for each others support, right now she needs are support and Love more then ever, so lets give back to her what she has given to us. If your offended by what you've read, PLEASE just delete it and move on. If your offended by email, I'm sorry, but again I would say just delete it. If however you have something positive to say please do

so, we need positive around us, this disease has given all of us more negative attention then we can deal with.I hope you see that I am writing this out of love and respect for ALL that Tracie and many other Mods has given all of us. PLEASE give her your full support and respect by staying positive. I'm not saying you can't rant and vent here, and yes we do sometimes say negative things in our rants, but there usually about ourselves not about another post. I hope I make sense, I know some times I just go on and on. Tracie, we love you, and hope you get something to help make you feel better soon. Lets shower her with our love:) Blessings, Marla

On Sat, Jun 5, 2010 at 11:08 AM, tracie feldhaus <tiodaat2001@ yahoo.com> wrote:

Sorry guys, I'm on major overload and making huge changes to my meds-- (I'm off all of them..) and I'm tired of having to be the one to sit on the fencepost, trying to find a way to make all of you feel wanted, cared for, and not offend any one persons belief system.

Personally, my relationship in faith is wonderful and yes, I found this funny.

This last week, I've had "friends" decide that I had the energy to sit with someone local and volunteer my time-- and I don't have any energy to take care of me-- yet alone others.

I've been jumped by my family for not "taking" the time for my parents. Sadly, I don't have the energy.

I'm looking, needing, and wanting to find some humor in living with chronic illness-- and those of you that have been around for years--- know how many hours and days, and weeks, and months-- that I've been assisting all of you with this journey.

Neurosarcoidisis, in my case, affects the Executive Function part of my brain, that's where we make decisions and handle the day to day challenges in personality, relationships, problem solving, multi-tasking, etc.

It amazes me that it's ok for you to choose your way of expression-- but when it's one of the owners (me) or (moderators) -- we aren't supposed to be as human as the rest. It's not ok for me to share this humor, but it's ok for all of you to share your stuff-- the fears, tears, etc.

None of you realize how little support your owners and moderators get-- we are expected to answer all your posts, and I'm feeling quite alone in my battle.

TRacie

From: tracie feldhaus <tiodaat2001@ yahoo.com>To: Neurosarcoidosis@ yahoogroups. comSent: Sat, June 5, 2010 9:41:27 AMSubject: Re: Atheist Holy Day

YOU ALL SAID YOU WANTED TO BE ABLE TO EXPRESS YOURSELF. I'VE FOUGHT, MONITORED, LAUGHED, CRIED, SHOUTED, YELLED, BEEN YELLED AT-- BOTH BY THOSE WHO BELIEVE AND THOSE WHO DON'T WANT TO HAVE THIS BE A RELIGION FORUM--

EVERY SINGLE TIME I'VE ASKED FOR OPINION-- HONEST OPINION-- THE CHRISTIAN'S TAKE OFFENSE AND RUN AWAY AND DECIDE NOT TO POST -- AND THOSE THAT WON'T TAKE A STAND, AREN'T POSTING ANYWAY.

I DON'T KNOW WHAT TO DO-- AND YES, I RECIEVED IT FROM MY MOTHER-IN-LAW, WHO DOESN'T MISS A SINGLE MASS-

AND YES, I THOUGHT IT WAS FUNNY! HILAROUS IN FACT!

LIGHTEN UP GUYS, LIFE CAN BE SHORT, FILLED WITH PAIN, EMOTIONAL, PHYSICAL, SPIRITUAL-- AND WE ARE ALL WAY TO SERIOUS!

TRACIE

NS CO-OWNER/MODERATOR

From: Rick Jack <jack11973 (AT) yahoo (DOT) com>To: Neurosarcoidosis@ yahoogroups. comSent: Sat, June 5, 2010 5:45:39 AMSubject: Re: Atheist Holy Day

It's nonsense, but everyone has the right to believe or not believe. IMO, this group is about N.S. and we should keep religion out of it.

From: tracie feldhaus <tiodaat2001@ yahoo.com>Subject: Atheist Holy DayTo: neurosarcoidosis@ yahoogroups. com, " Bettis" , Robosan (AT) sbcglobal (DOT) net, "Skot Stribolt" <Skotsteven@sbcgloba l.net>, "June Wittwer" <mzwitt01 (AT) yahoo (DOT) com>, "Steve and Sue Kirkwold" <iphoto (AT) comcast (DOT) net>Date: Saturday, June 5, 2010, 1:19 AM

This is excellent !!

Florida Court Sets Atheist Holy Day!

Gotta love this Judge!

You must read this.......a proper decision by the courts...for a change.

FLORIDA COURT SETS ATHEIST HOLY DAY

In Florida , an atheist created a case against Easter and Passover Holy days.

He hired an attorney to bring a discrimination case against Christians and Jews and observances of their holy days. The argument was that it was unfair that atheists had no such recognized days.

The case was brought before a judge. After listening to the passionate presentation by the lawyer, the judge banged his gavel declaring,"Case dismissed!"

The lawyer immediately stood objecting to the ruling saying, "Your honor, How can you possibly dismiss this case? The Christians have Christmas, Easter and others. The Jews have Passover, Yom Kippur and Hanukkah, yet my client and all other atheists have no such holidays.."

The judge leaned forward in his chair saying, "But you do. Your client, counsel, is woefully ignorant."

The lawyer said, "Your Honor, we are unaware of any special observance or holiday for atheists."

The judge said, "The calendar says April 1st is April Fools Day. Psalm 14:1 states, 'The fool says in his heart, there is no God.' Thus, it is the opinion of this court, that, if your client says there is no God, then he is a fool. Therefore, April 1st is his day.

Court is ad jo urned.."; You gotta love a Judge that knows his scripture!

This is too good not to forward

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