Fw: I am going to take a few days rest

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Lets pray for Kathy!

----- Original Message -----

From: " Kathi " <pureheart@...>

Sent: Tuesday, October 29, 2002 3:08 AM

Subject: I am going to take a few days rest

> I am so miserable! LOL!! This is horrid! Surprisingly, the flares are

> getting further apart and less severe each time but occasionally, one

> gets really strong. My Rheumy was on call and at the hospital tonight

> so he met me there. He said that between the lupus, , Raynaud's

> and Sjogren's, (all acting up at once), my entire system is inflamed and

> the vascular in and around the lung is pretty bad. My entire stomach

> has probably 5-600 little red dots (petichae) and it also looks like

> someone took an extremely fine pointed pen and traced a type of abstract

> design all over it, just a bunch of connected thin purple lines in less

> than dime size shapes; my arms have several of the burst vessels up and

> down them (purpuras-sp?). My entire throat and chest are purple with

> vascular inflammation. My scalp, arms and legs are covered with

> folliculitis, my hands with eczema and my feet with psoriasis. All this

> stuff with trying to take care of a very overly demanding and

> controlling mother along with my own problems has been far too much and

> the last three and a half months of it was just more than I could

> handle, my body he said kind of went into overload and short circuited.

> Anyway, I got pain pills to get me through the night but beyond that

> they cannot do much but watch that I do not dehydrate, start bleeding,

> stroking or need intibation. I can only take the medrol dose pack for

> the breathing because of the Cushings and severe intolerance but it is a

> must, no way out right now. I did find out that that is what is making

> my pain worse though. If a person has fibromyalgia or chronic fatigue,

> prednisone actually works against you prolonging and intensifying pain

> and duration, but they said the new studies show that most people taking

> it for either of those symptoms will choose to believe that it is

> helping when it really is the opposite out of shear desperation for

> relief and they said if the same people believed that strongly in say a

> sugar pill or prayer it would do the same, except that with the

> steroids, permanent, irreparable damage starts immediately with the

> first steroid pill at any dose. As if I needed to hear that when it is

> all that is keeping my airways open right now. So, things are not for

> naught, it is also turning out to be a learning experience. Always try

> to find the good that you can take out of any situation. It is there

> and never allow it to be for nothing! That VICTORY is YOURS and you do

> not have to just except it as being your fate because it isn't. We are

> all where we are by decisions we made, in every area of our lives, and

> yes, we do not walk a straight unblemished path in life so we gather

> some wounds and scars but we don't have to live as victims of them!

> There is good to be gleaned in EVERY situation that we find ourselves in

> if we look for it. Right now, I am learning trust, deepening my faith,

> growing more in patience, serenity, compassion, empathy and awe in the

> multiple mercies of my Lord. With each flare, I learn more about it and

> can use that to research more, and obtain some insight and wisdom and in

> turn I can give more to help others. I am going to rest today if they

> allow me to stay home after the appointment. they are going to do more

> blood work, take a punch biopsy of the skin to try and exactly pinpoint

> the type of vasculitis this is, and after removing a calcified area on

> my elbow for biopsy, they are going to take a slice of muscle. Maybe we

> will have more answers soon that can help some one out there. Always

> remember that you have this situation, it DOES NOT have you! If

> something important comes up, Kathy Nye's email is Kathynye@....

>

> Love and prayers!

> Kathi

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