RE: shingles vaccine/where I've been

[Guest guest]

Hey, Kay! I've been wondering & worrying about you, for good reason it seems. I had considered going to Tennessee, but I've got a lot of family stuff going on this weekend so I'll have to pass. It's hard, knowing how beautiful it would be right now.

Re: your husband. I have a friend whose husband Danny went to the doctor several years ago with shortness of breath. He was about 50. The doctor did xrays, etc. & told him his chest was full of cancer. He saw a surgeon that day who drained about 2 liters of fluid from around his lungs. He told me friend to just take him home & that he probably wouldn't make it through the night. Well, of course he did. That night, and the next, etc. Jane had taken emergency leave & then FMLA to spend all her time with him. But the sucker didn't die! He would periodically have to go in and get the fluid drained off, and they finally put in some kind of port so that they didn't have to stick him again. Jane insisted on having him seen by an oncologist, who agreed that there was nothing to be done but keep him comfortable. So they both sat around waiting for him to die. After a few weeks, she came back to work. He had already taken early retirement, so he just puttered around the house & worked on his cars (they were into the classic car thing) for 3 MORE YEARS! I was half-hoping Jane would put something in his obituary about the doctors sending him home that first day & saying he probably wouldn't make it through the night.

A spectular example of miracles, or medical misdiagnosis, probably miracles.

Ramblin' Rose

Moderator

Reply-To: Neurosarcoidosis To: Neurosarcoidosis Subject: shingles vaccine/where I've beenDate: Mon, 26 Mar 2007 20:16:57 -0700 (PDT)

Hey Rose and all my sarc friends----

I know it's been ages since I've been on here. Between June 29 and Mar. 2, I spent 220 days(yes, 220 days) either in a nursing home/rehab center, with @ 6 weeks of that time hospitalized. I've been to hell and back. The earliest problems came from gout(which I had never had before) and osteoarthritis. I was in horrible pain when the doc took me off Celebrex>My legs and feet swelled and turned red and looked and felt like they would explode.

I was well enough to get out in Oct. to attend the Indy Sarc Retreat and then was back with the pain again. I made it home for 3 weeks and then went back to the hospital, this time with a combined heart, sleep apnea, and medication dosage problem. This time I was on a respirator for a week and my husband bought us cemetery plots! Well, I rallied and it was back to the nursing home for half of Dec. - Mar. 2. Knock on wood, I want to stay here. While I was there in Jan., my husband had a nasty flare in his cancer(doubled in size and wrapping around his colon). The doctors basically said there was nothing to do. He signed a DNR. They brought in Hospice and then sent him to the same nursing home I was in. Well, he showed them all. He's stronger and healthier than he's been in months.

Now to the topic of shingles. Gout was very painful and then while I'm in the h ospital I picked up the MRSA virus. After that shingles hit mid-Jan. and I'm still dealing with it. I had scabs in my right eyebrow up to 4 inches into my hairline. Luckily it didn

't go into my eye itself, but I dealt with the neuropathy associated with it. Pain would shoot from the top of my head and curve around to the side of my eyelid. Several weeks into the shinges, I saw an ad for Lyrica, but the ##%% nursing home doc didn't even bother to see me until I was dismissed. I've been on it a couple weeks and do see improvement. He didn't know if someone who'd already had shingles(this was my second time) could get the vaccine. I'm going to check with more dependable doctors.

Is anyone going to the TN sarc retreat this weekend? I want to, but now I have pink eye to get over. I think my immune system is just shot.

Everyone take care!

Kay Pullen

Re: numbness and painDate: Wed, 21 Mar 2007 15:32:00 -0000

>I agree, that numbness will be the start of a flare-up and the PAIN I also avoid pain killers i donot want anymore meds in my system. And I refuse presc. pain killers. I am in a flare up now and i also find a chickenpox type of rash. does anyone else experience this? Anne> Marla, numbness is usually a sign for me that a flare-up is on the> way. If not controlled (steroids are what work for me) then paralysis> of something is on the way. Pain is a constant. It's the hardest part> for me. Coping with pain every day. I am loath to take pills and tend> to put up with it, rather than be doped up. I am so sorry you are> having to go through this. It is very hard when every day activities> are made so difficult by disease. Hugs to you.>Exercise your brain! Try Flexicon.

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[Guest guest]

Kay,

I’m

sorry to hear of tough times, and glad you are on the road to recovery, the Lyrica

works great for me! Good to hear from you, Marl a

Marla

Bramer

" Faith

sees the invisible, believes the incredible and receives the impossible "

From: Neurosarcoidosis [mailto:Neurosarcoidosis ] On Behalf Of Kay Pullen

Sent: Monday, March 26, 2007 9:17

PM

To: Neurosarcoidosis

Subject:

shingles vaccine/where I've been

Hey Rose and all my sarc friends----

I know it's been ages since I've been on here. Between June 29

and Mar. 2, I spent 220 days(yes, 220 days) either in a nursing home/rehab

center, with @ 6 weeks of that time hospitalized. I've been to hell

and back. The earliest problems came from gout(which I had never had

before) and osteoarthritis. I was in horrible pain when the doc took me

off Celebrex>My legs and feet swelled and turned red and looked and felt

like they would explode.

I was well enough to get out in Oct. to attend the Indy Sarc

Retreat and then was back with the pain again. I made it home for 3 weeks

and then went back to the hospital, this time with a combined heart, sleep

apnea, and medication dosage problem. This time I was on a respirator for

a week and my husband bought us cemetery plots! Well, I rallied and it

was back to the nursing home for half of Dec. - Mar. 2. Knock on wood, I

want to stay here. While I was there in Jan., my husband had a nasty

flare in his cancer(doubled in size and wrapping around his colon). The

doctors basically said there was nothing to do. He signed a

DNR. They brought in Hospice and then sent him to the same nursing home I

was in. Well, he showed them all. He's stronger and healthier

than he's been in months.

Now to the topic of shingles. Gout was very painful and then

while I'm in the h ospital I picked up the MRSA virus. After that

shingles hit mid-Jan. and I'm still dealing with it. I had scabs in my

right eyebrow up to 4 inches into my hairline. Luckily it didn

't go into my eye itself, but I dealt with the neuropathy associated

with it. Pain would shoot from the top of my head and curve around to the

side of my eyelid. Several weeks into the shinges, I saw an ad for

Lyrica, but the ##%% nursing home doc didn't even bother to see me until I was

dismissed. I've been on it a couple weeks and do see improvement.

He didn't know if someone who'd already had shingles(this was my second time)

could get the vaccine. I'm going to check with more dependable doctors.

Is anyone going to the TN sarc retreat this weekend? I want

to, but now I have pink eye to get over. I think my immune system is just

shot.

Everyone take care!

Kay Pullen

Re: numbness and

pain

Date: Wed, 21 Mar 2007 15:32:00 -0000

>I agree, that numbness will be the start of a flare-up and the PAIN I

also avoid pain killers i donot want anymore meds in my system. And I

refuse presc. pain killers. I am in a flare up now and i also find a

chickenpox type of rash. does anyone else experience this? Anne

> Marla, numbness is usually a sign for me that a flare-up is on the

> way. If not controlled (steroids are what work for me) then paralysis

> of something is on the way. Pain is a constant. It's the hardest part

> for me. Coping with pain every day. I am loath to take pills and tend

> to put up with it, rather than be doped up. I am so sorry you are

> having to go through this. It is very hard when every day activities

> are made so difficult by disease. Hugs to you.

>

Exercise

your brain! Try Flexicon.