OT: Need a little help from my friends.

I'm now on a very quick taper of my normal Prednisone dose in order to get me in shape for my infusion treatments (we'll know if it's possible in three weeks). If any of you guys have been on long term Prednisone, you'll know that the tapers are horrible. I'm having constant panic attacks, hurt like someone hit me with a baseball bat, and am shaking out of my shoes. I can't even bead, because I'm shaking too much to hold a needle. Bob is staying here with me, because I'm so afraid.

I need some support. Help me through this, guys. Tell me it's worth it, that I'll get approved for the infusions. (Right now, I have to lower the Prednisone because I am outside the very narrow window that the insurance companies insist upon for paying for this ungodly expensive treatment) If I am not approved for this drug, my only other choice is a modified form of chemotherapy, and I really, really don't want that. The rationale behind the chemo drug is that it will beat down the part of my immune system that is causing my lungs to overreact to any stimulus. The down side is that it beats down your immune system, leaving you vulnerable. It's not something that they do as a matter of routine -- this last ditch thing is to try and improve my quality of life.

It's gonna get worse before it gets better, and I'm scared. Hold my hand, please.

Kathy N-V

P.S.: Damn, it's hard for me to ask for help.

Reply to
Kathy N-V
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I'm now on a very quick taper of my normal Prednisone dose in order to get me

Reply to
Kandice Seeber

Kathy,

I'm holding your hand and giving it gentle squeezes from time to time so that you know I am there and that I care. Please let me bear some of the pain for you.Visualize the transfer of some it from your hand to mine.

And ask for help when you need it, please, You've been a rock for so many of us so many times. Let us be there for you.

Linda2

Reply to
Linda2

Kathynv, you are not alone. Jan in NZ here and I do not usually put finger to the keyboard to send out messages, just send out thoughts as they are needed but I am sending vibes your way. It is a glorious day here and almost summer. When you are better come and bring your family. I feel that I know you all. Cheers, Jan

Reply to
Jan NZ

You got it, sweetie. I do know (in a very small way) what you're going through. You'll get through this...if RCB has anything to do with it...and you know how strong our "vibes" are.

Don't be afraid to keep letting us know how you're doing, and just hang in there...we'll be here for you.

Gentle hugs...and healing prayers

Reply to
Jalynne

I know I speak for everyone when I say we're here for you!!

Reply to
Barbara Forbes-Lyons

vj found this in rec.crafts.beads, from Kathy N-V :

]It's gonna get worse before it gets better, and I'm scared. Hold my hand, ]please.

Kathy - you are always in my prayers. from the typing i do, i know you're not exaggerating. all i can tell you is that it does seem to work for the MDs here.

hang in there, sweetie!

----------- @vicki [SnuggleWench] (Books)

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's not what you take, when you leave this world behind you;it's what you leave behind you when you go. -- Randy Travis

Reply to
vj

Prednisone withdrawal is no fun at all. Have you tried a hot bath? Soothing music? Screaming? Funny movies? A massage?

Lots of virtual hugs ... you can get through this and you will get through this.

Elise

Reply to
EL

On Wed, 19 Nov 2003 14:22:10 -0500, vj wrote (in message ):

Nope, not exaggerating even a little. The reality was that the appointment was much scarier than I wrote. I don't know if it's because I actually had to come face to face with what's really happening or that it was really that scary. I think it might be a little of both. I asked Bob if he felt that I was laying it on a little thick when I talked to the doctor, and he said, "Oh Jeezus! No!"

Its really hard for me to be objective about all this. I feel like if I try hard enough, I can overcome this, dammit. But after almost three years, my best efforts just aren't doing it. I feel like I had no choice but to ask for help. And that kills me -- I'm the one that does the helping!

Thank you all so much. I'm feeling the strength pouring my way.

Kathy N-V

Obligatory Bob Reference: It occurred to me last night that even though I said I was going to Germany come hell or high water, someone I to whom I am married might sabotage the trip. So I asked. After much hemming and hawwing, my husband started blushing (!). Turns out that he decided to sabotage the trip, and was going to call Lufthansa and tell them that I was flying against medical advice. Since I've had to provide written clearance from my doctor before, I know that Lufthansa would have refused to transport me.

I'm torn between kicking him in the behind or being glad that he was so creative in trying to be protective of me. I might just do both.

Reply to
Kathy N-V

Anything you need.... calming vibes...sending boatloads... we are here, holding you... you can get through this... thoughts of lessening pain wafting through to you .. If its bad enough youre asking for help it must be pretty horrid. I am not sure what else I have to offer but its yours... Gentle Hugs Kathy! Diana

Reply to
Diana Curtis

vj found this in rec.crafts.beads, from Kathy N-V :

]Turns out that he decided to ]sabotage the trip, and was going to call Lufthansa and tell them that I was ]flying against medical advice. Since I've had to provide written clearance ]from my doctor before, I know that Lufthansa would have refused to transport ]me. ] ]I'm torn between kicking him in the behind or being glad that he was so ]creative in trying to be protective of me. I might just do both.

be glad that he CARES that MUCH! [and do both!]

----------- @vicki [SnuggleWench] (Books)

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's not what you take, when you leave this world behind you;it's what you leave behind you when you go. -- Randy Travis

Reply to
vj

Kathy -- being another strong woman I can completely relate to how hard it is to ask for help. I would rather cut off my left tit than to tell people that I can't handle something by myself.

Here is something that has always been used in the recovery community -- one day at a time. You take the hard parts one day at a time, one hour at a time or one minute at a time. Just have to get through this, what is going on now, and there is nothing in front of it. Just now. It has always helped me immensely.

Sounds like there is great help for you in completing the taper, a really good reason to do it. Talk all you want to, here or in email. I will listen and I will support.

Love you -- Becki

Reply to
BeckiBead

I was on a heavy load of prednisone for a bad allergy reaction a couple of years ago. Carol freaked out when she heard how they were taking me off it -- there was no tapering at all, just quitting. She told me to cut pills in half and taper it, making sure that it was an easy process instead of a hard one. I haven't been on it the way you have, but I know others with that experience. It is very serious and should be taken seriously.

Becki "In between the moon and you, the angels have a better view of the crumbling difference between wrong and right." -- Counting Crows

Reply to
BeckiBead

Kathy,

Please take good care of yourself, and please let other people (your family and people here) take care of you too!

And try not to worry about what's going on with the rest of your family. Or at least, try not to feel RESPONSIBLE for it. It sounds like Oma has lots of relatives to help take care of her, and I am sure that she and all of your family there would understand that with serious medical issues of your own you can't just hop over there... if you call and send your news, that shows you are thinking of them.

marisa2

Reply to
Marisa Exter

Delurking to say I am here to hold your hand kathy! You can make it! )))))))))))))))))))))Loving Vibes((((((((((((((((((((((((( Jennifer

Reply to
jennifer tax

That firm grip you feel is my hand holding yours. The weight is my other arm around your shoulders. Believe it. Barbara Dream Master

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Autumn is a second spring when every leaf is a flower. ~~ Albert Camus

Reply to
Barbara Otterson

Kathy, *ANYTIME* you need help, Call Me, PLEASE!!!

I will be there. and blast it, I am mostly up at night, and I don't care if Ken *is* home then, if you need help at 3am, call me!

I am going to send you my phone numbers by private email., just PLEASE, CALL!

Mary

Reply to
meijhana

btw, even though I haven't sent your Bali yet (probably tomorrow???), look in the mail. Tomorrow, hopefully!

Mary

Reply to
meijhana

Reply to
roxan

Cheeee.... Even the vet gave me detailed instructions re: tapering off prednisone for dear old Bob. (He's been having arthritis problems since the weather started cooling, so he got a shot and a bottle of pills). Kaytee "Simplexities" on

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Reply to
Kaytee

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