She finally answers your posts

[Guest guest]

Hello,

Just an update on what has been going on. I’m still in the hospital and

hope that I might be able to leave sometime next week.

I wanted to thank all of you who have written me.

Vera: The poem accident post was really helpful but from what you said, I

should rescind my thanks and forward them to Shirley for the posting it to

begin with. So I guess I must change what I am thanking you for. Here it

goes, Thank you Vera for having an online accident. LOL

Shirley: Now that I have been corrected by Vera, Thanks for posting that

beautiful poem so that could Vera accidentally reposted it. It helped me a

lot.

Jeffery: Thanks for the good wishes

Barb: Thanks for the prayers and did you call me? I think it was you but it

might have been the Barbara from another group that I am a member of.

Anyway, if it was indeed you, thank you very much, if it wasn’t, you don’t

have to tell me and I’ll never know the difference. LOL.

Bill: Thanks for the info on the gall bladder. The test came back negative

so I’m happy about that. I am not on any antibiotics for this. Because of

the drug reaction in February, I have left in a state of hypersensitivity to

antibiotics. I have been told that I probably will not be able to take

them, in any form, again in my life because of the botched job of treating

my staph infection and my hyperactive immune system. My blood workup looks

good, nothing out of the ordinary. Don’t have the flu, no blood disease…

and let me tell you, they checked for disorders so rare I had to look them

up. The pain is from the MSA. I’m not sure what you meant when describing

body temperature to me. My normal temp is 97.4 and a temp of 100.4 will

leave me feeling terrible, at 99, I am tired and achy. It really doesn’t

matter that that the doc who argued with me should be drop kicked or not..

my PCP’s father had atypical PD and he took care of him for 16 years and has

put on my medical records here at the hospital to give me Tylenol if my temp

goes above 99.

Carol & Rob: Yes, they did find out what was causing the rash. The

complications that I developed after the brain surgery and the progression

MSA has caused my immune system to be hyperactive. Anything that I try to

take that I have taken before is being rejected by my body resulting in this

rash. It got so bad yesterday that I finally gave into the doc’s request

that I start steroids again. He knows how much I dislike the steroids and

waited for me to accept them. He had been offering to put me on them since

I got here but stubborn me wanted it to just go away on its own (which was a

possibility, I was told).

Marilyn: Thank you for the information. I now have something to give me

hope that I might find a med that I won’t react to. I took a new medication

yesterday for edema and had NO reaction. I tried another pain med this

morning and wham, back cam the rash in virulent form. I will write down all

my medications that I am reacting to and look for a common thread… wouldn’t

it be just about right if I have spent all this time in the hospital because

of a “filler” in the medication.

Sally: I don’t think that I am latex sensitive. You are correct that I

have been exposed to it a lot lately. I did a count and have been in the

hospital 33 days since Dec. 20. My immune system is just whacked out from

everything and I was going to give in and just quit trying to find a pain

pill because of my fatigue from drug reactions but Marilyn gave me a new

reason to search and that is exactly what I am going to do. We talked to

the PCP, an internist, yesterday about an allergist. He told us that if I

were healthy maybe we could risk having me tested to find out what is

causing all of this but because of the shape I am in, it would be dangerous

to expose me to their tests and just to make me giggle, he asked me if I

really thought it was possible to have an allergist come in and look at me

and tell me what I was allergic to. The dermatologist did run some kind of

allergy test using my blood test but they all came back negative.

Timo: My dermatologist ran some blood tests and told me that I have hives

because I am allergic to something. We have seen the rash come and go

depending on what medication I take. That is one reason that they are still

keeping me here… trial and error. It doesn’t appear to be related to

anything environmental because the only time that I react is about an hour

after taking certain drugs.

Aletta: I agree, I’m going with the allergy theory as is my PCP. I’m going

to do some hunting and digging today to find the common thread and will talk

to my doctor about it.

Pam: You are so sweet. I don’t give up easily but I just about did on the

pain med thing. Everyone here is of so much value. Ya’ll actually spent

the time to think about the question that I posed and have provided me with

NEW AND WORKABLE info to take to my doctor to try and solve this riddle.

WOW, ya’ll are GREAT!

Belinda: I had a smart-ass remark to make about your post when I first read

it but wasn’t feeling good enough at the time to respond. Now that I have

gone back and re-read it, I can’t remember what I was going to pick on you

about. Whaa! Oh well, guess I will have to wait till next time. Yep, the

laptop is with me here in the hospital. I haven’t felt well enough to use

it until today. Thanks for the prayers, they do help.

Belinda, I also want to say something on a more serious note. I am not

angry with anyone I have met or anything that I have gone through because of

this disease. I do use the word frustrated because I am not in control of

the situation and seem to be pulled along some magic carpet ride that I had

no voice in taking. I don’t like not being in control. But anger is not

something that I have given in to. I know from the bottom of my heart and

soul that God has a reason for me going through all that I am. I also know

that it does not necessarily have to have anything to do with me but may

just be a way to bring others to him through my experiences. So far, I have

been led to 2 other members of my church and have received 2 letters from

people that were just about to commit suicide but changed their minds after

reading my story. That information was almost too intense to be told. I

have prayed over this and have even asked God if he knows what he is doing

in this case. Proof always comes when I start to doubt again. For

instance, I had written a letter to the editor of the Charlotte Observer and

it was published in yesterday’s paper along with my picture which resulted

in even more people emailing me and telling me their story and perpetuated

me retelling once again the origin of, “My strength, courage, and stamina

comes only from 1 place…. God’s Grace.” So you see, I experience many

emotions with this disease but can usually dig deep enough to find some good

from it and when I falter, someone on the list always comes through in time

to kick my hiney out of whatever mode it is in and jump start my tired

little battery again. Guess you might say that instead of being like a

disposable battery, I am the rechargeable kind. Now all I have to do is

figure out what brand. Think I would rather be an energizer than a generic

one. LOL.

I do have another hospital horror story to tell (bet ya can’t wait) but will

do it in a separate post. Thanks again everyone for all of your support.

To the new folks here…. You will find this group to be a wonderful source of

courage, support, help and information. I don’t believe you will regret

finding these people.

For those that have lost someone dear to them, I admire your continued

support for those of us still in need of answers and assistance. I wish

each of you peace of heart and joy or mind for standing by the ones that you

love.

Deborah

aka TenacityWins

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[Guest guest]

Deborah,

Thank you! I just got home from church and jumped on here to see if

you replied to my post. Yeah! you had. I am glad you explained that

to me because I don't always remember what I post but I always know I

have good intentions. LOL (God bless me, I surely need it)I guess you

didn't get my saying I was starting my own saying " It's a wonderful

thing " I figured I would grab it since Martha has " Its a good

thing " hehe I am definitely not a Martha wanttobe LOL. Even I

don't believe Martha can be what Martha wants us to

believe she is! We could start our group in here though with our own

sayings " It's a wonderful thing " especially because there is so much

love here! That aint no lie! There is always a rainbow if we look

hard enough. Oh me, someone in here had a wonderful saying and it

might have been you Deborah (excuse my brain farts) but I can't even

remember what it is but I do remember it was a wonderful saying. Ok

so why did I even bring it up? Who knows? Only because I know it was

a wonderful saying and my fingers needed exercise. LOL

God Bless us all,

Belinda

> Belinda,

>

> You never hurt me in any way, shape or form. You had said, " I can

imagine

> the anger you must have over all of this. I would also if I had to

go

> through all that

> you have been through " I just wanted to let you know I am not

angry and

> why.

>

> I met a lady shortly after my dx that was angry at the world for

her

> having an incurable disease. I prayed that I would always remember

to use

> her as my mentor. She inspired me to know exactly the type of

person that I

> NEVER wanted to turn into because of this disease. She motivated me

to keep

> tabs on what I say and do and I wanted to respond to what you said

in case I

> came across that way.

>

> Thank you and your family for all the prayers. I do know that

prayer

> works.

>

> Lastly Belinda, you make posting fun. In reference to your

saying, " I

> wish I could help you with suggestions like the others but I don't

know

> enough to give you suggestions. " I'M BLOWING YOU A BIG RASPBERRY

HERE!!!

> Each person contributes what they have and help in different ways.

You dear

> lady, always make me smile with your quick wit and intellect.

Honey, you

> and I would be great fun together if ever given the opportunity to

be

> deliberately put together in the same room for any length of time.

Think

> about it, no one would forget us, I'm sure. Never again do I want

to hear

> you say that you don't have anything to suggest. You have a great

big heart

> and one wry wit about you and i love you dearly for it.

>

> Hugs and Warm Fuzzies,

> Deborah

>

>

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