Re: adult stem cell study-Rose, etc.

[Guest guest]

Hi Y'all,

I'm sorry we've been silent for so long. Life has been terribly overwhelming

and we had to move during Gregg's last hospital stay because he's not lost the

use of his legs entirely and the old place was not at all wheelchair accessible.

We've had no computer (or phone) for weeks and I have about 600 emails saved

up... I do have the answer to some of your questions, though:

It's Dr. Burt at Northwestern University in Chicago.

It's an autologous stem-cell transplant. He appears to have " cured " an MS

patient this way.

When last I checked, there was no funding for the study, so it would have to be

fought out with your insurance company to get it approved (God knows how long

that could take...). If approved, you would have to get yourself to Chicago and

live there for days to weeks at a time. If they decide you're a good candidate,

They will inject you with something to stimulate stem-cell production, then

harvest the new stem-cells. After that they will use chemotherapy to kill all

the stem-cells in your body. The final step is to reintroduce the new, healthy

stem cells they harvested from you back into your body.

We, too, have the information and application. I went so far as to gather

Gregg's medical records as well, but then we had to move and I have no idea

where it all is now. Not only that, but I'm afraid we will never have the money

to do such a thing even if we were approved... We finally were approved for

disability, but when the check arrived, it wasn't even enough to cover a quarter

of our debt built up because of this illness. It sounds terribly ungrateful to

receive a check for thousands of dollars in the mail and be pissed, but that's

what happened. IF they had just begun sending the monthly amount 6 months after

Gregg had to quit working, we would never have gotten into this predicament.

Our new house payment is $1100.00 per month, and we were counting on the

back-pay to significantly pay down our debt so we would be able to afford that.

Now, I don't know what we will do. It took almost 2 years and a lawyer and the

involvement of our congressman in an election year to get it in the first place.

They did not pay anything for the first 5 months he couldn't work (which

wouldn't have been so terrible if they hadn't waited so damn long to begin in

the first place). My new/old favorite oxymoron is " Government Assistance " . I'm

afraid I've been quite ungrateful and quite depressed (I'm beginning to come out

of it now) because I really had hung my hopes on the disability back-pay as

allowing a " fresh start " with enough resources to pay our bills and live at the

same time. I'm sure the monthly amount will help, but I don't know how we will

deal with our new, much higher, rent payment. It's a 2 year lease with option

to buy (which we originally intended to do - at least, then, we might be able to

get a consolidation loan against our equity). And it's absolutely crushing to

think about possibly having to move again. I, pretty much, accomplished this

move on my own. If not for the guardian Angel who took us under his wing and

got us into this house, I have no idea what we would have done.

I'm sorry I was gone for so long... I can't, even now, promise I'll be very

present right now. Thank you for listening, and Reneness - if you wouldn't

mind, we could sure use a case of purple bootstraps out this way!

Lots of Love to everyone!

Jeri

[Guest guest]

Hi Jeri... it is so good to hear from you. I have been wondering about you and Greg. I am so sorry about the disappointing amount of money you received. I don't think most people understand the financial burdens that the chronically ill have. I wish I could be of more help. My prayers will certainly go out for both of you and the situation you are in. I wish I could add a few gold coins in with those bootstraps. My prayer/wish is that somehow what you need will come your way. love and hugs S.KangiKanti7@... wrote:

Hi Y'all,I'm sorry we've been silent for so long. Life has been terribly overwhelming and we had to move during Gregg's last hospital stay because he's not lost the use of his legs entirely and the old place was not at all wheelchair accessible. We've had no computer (or phone) for weeks and I have about 600 emails saved up... I do have the answer to some of your questions, though:It's Dr. Burt at Northwestern University in Chicago.It's an autologous stem-cell transplant. He appears to have "cured" an MS patient this way. When last I checked, there was no funding for the study, so it would have to be fought out with your insurance company to get it approved (God knows how long that could take...). If approved, you would have to get yourself to Chicago and live there for days to weeks at a time. If

they decide you're a good candidate, They will inject you with something to stimulate stem-cell production, then harvest the new stem-cells. After that they will use chemotherapy to kill all the stem-cells in your body. The final step is to reintroduce the new, healthy stem cells they harvested from you back into your body. We, too, have the information and application. I went so far as to gather Gregg's medical records as well, but then we had to move and I have no idea where it all is now. Not only that, but I'm afraid we will never have the money to do such a thing even if we were approved... We finally were approved for disability, but when the check arrived, it wasn't even enough to cover a quarter of our debt built up because of this illness. It sounds terribly ungrateful to receive a check for thousands of dollars in the mail and be pissed, but that's what happened. IF they had just begun sending the monthly amount 6

months after Gregg had to quit working, we would never have gotten into this predicament. Our new house payment is $1100.00 per month, and we were counting on the back-pay to significantly pay down our debt so we would be able to afford that. Now, I don't know what we will do. It took almost 2 years and a lawyer and the involvement of our congressman in an election year to get it in the first place. They did not pay anything for the first 5 months he couldn't work (which wouldn't have been so terrible if they hadn't waited so damn long to begin in the first place). My new/old favorite oxymoron is "Government Assistance". I'm afraid I've been quite ungrateful and quite depressed (I'm beginning to come out of it now) because I really had hung my hopes on the disability back-pay as allowing a "fresh start" with enough resources to pay our bills and live at the same time. I'm sure the monthly amount will help, but I don't know how we will deal

with our new, much higher, rent payment. It's a 2 year lease with option to buy (which we originally intended to do - at least, then, we might be able to get a consolidation loan against our equity). And it's absolutely crushing to think about possibly having to move again. I, pretty much, accomplished this move on my own. If not for the guardian Angel who took us under his wing and got us into this house, I have no idea what we would have done.I'm sorry I was gone for so long... I can't, even now, promise I'll be very present right now. Thank you for listening, and Reneness - if you wouldn't mind, we could sure use a case of purple bootstraps out this way! Lots of Love to everyone!Jeri~~~~ *** ~~~ *** ~~~ *** ~~~~The Neurosarcoidosis CommunityNS CHAT:- Has been cancelled for now.Message Archives:-http://groups.yahoo.com/group/Neurosarcoidosis/messagesMembers Database:-Listings of locations, phone numbers, and instant messengers.http://groups.yahoo.com/group/Neurosarcoidosis/database

[Guest guest]

Original Message:

-----------------

From: KangiKanti7@...

Date: Wed, 03 Nov 2004 14:19:20 -0500

To: Neurosarcoidosis

Subject: Re: adult stem cell study-Rose, etc.

Hi Y'all,

I'm sorry we've been silent for so long. Life has been terribly

overwhelming and we had to move during Gregg's last hospital stay because

he's not lost the use of his legs entirely and the old place was not at all

wheelchair accessible. We've had no computer (or phone) for weeks and I

have about 600 emails saved up... I do have the answer to some of your

questions, though:

It's Dr. Burt at Northwestern University in Chicago.

It's an autologous stem-cell transplant. He appears to have " cured " an MS

patient this way.

When last I checked, there was no funding for the study, so it would have

to be fought out with your insurance company to get it approved (God knows

how long that could take...). If approved, you would have to get yourself

to Chicago and live there for days to weeks at a time. If they decide

you're a good candidate, They will inject you with something to stimulate

stem-cell production, then harvest the new stem-cells. After that they

will use chemotherapy to kill all the stem-cells in your body. The final

step is to reintroduce the new, healthy stem cells they harvested from you

back into your body.

We, too, have the information and application. I went so far as to gather

Gregg's medical records as well, but then we had to move and I have no idea

where it all is now. Not only that, but I'm afraid we will never have the

money to do such a thing even if we were approved... We finally were

approved for disability, but when the check arrived, it wasn't even enough

to cover a quarter of our debt built up because of this illness. It sounds

terribly ungrateful to receive a check for thousands of dollars in the mail

and be pissed, but that's what happened. IF they had just begun sending

the monthly amount 6 months after Gregg had to quit working, we would never

have gotten into this predicament. Our new house payment is $1100.00 per

month, and we were counting on the back-pay to significantly pay down our

debt so we would be able to afford that. Now, I don't know what we will

do. It took almost 2 years and a lawyer and the involvement of our

congressman in an election year to get it in the first place. They did not

pay anything for the first 5 months he couldn't work (which wouldn't have

been so terrible if they hadn't waited so damn long to begin in the first

place). My new/old favorite oxymoron is " Government Assistance " . I'm

afraid I've been quite ungrateful and quite depressed (I'm beginning to

come out of it now) because I really had hung my hopes on the disability

back-pay as allowing a " fresh start " with enough resources to pay our bills

and live at the same time. I'm sure the monthly amount will help, but I

don't know how we will deal with our new, much higher, rent payment. It's

a 2 year lease with option to buy (which we originally intended to do - at

least, then, we might be able to get a consolidation loan against our

equity). And it's absolutely crushing to think about possibly having to

move again. I, pretty much, accomplished this move on my own. If not for

the guardian Angel who took us under his wing and got us into this house, I

have no idea what we would have done.

I'm sorry I was gone for so long... I can't, even now, promise I'll be

very present right now. Thank you for listening, and Reneness - if you

wouldn't mind, we could sure use a case of purple bootstraps out this way!

Lots of Love to everyone!

Jeri

~~~~ *** ~~~ *** ~~~ *** ~~~~

The Neurosarcoidosis Community

NS CHAT:- Has been cancelled for now.

Message Archives:-

http://groups.yahoo.com/group/Neurosarcoidosis/messages

Members Database:-

Listings of locations, phone numbers, and instant messengers.

http://groups.yahoo.com/group/Neurosarcoidosis/database

[Guest guest]

',

This was the perfect post to receive during my current state...thank you for your responding to Jeri.

I've realized after being part of this group for several month now, that yes, most of us are/were Type A perfectionist personalities ... hmmmmm, I wonder if that could be included in the "possible causes" for this monster. AND...and as you know, this is a really bid AND ... being Type A makes it even more difficult for us ... we resent losing our ability to live our lives as we want to, we resent being tired and in too much pain to point out the Step one you describe ... I have finally concluded that I can no longer deal with my LTD company ... I can't imagine dealing with SS! During my late-night pity-party on Friday night, I looked around my bedroom at the all the test reports, ins. co. info and forms, SS forms, folders, web sites I had printed, etc., etc., etc. .. my bedroom is crawling with them. It took everything in me from not throwing those away too. I figured ... hell, let everyone else like the doctors, lawyers, and insurance companies battle this and figure out what to do with me on their own ... they are paid enough. My once organized and perfect mind would know what to with all this info and do it ... my sick body and tired mind are finding it very difficult. I have so many dr. appt.s, that I can't even remember when they are or who they are with anymore.

Step two will/is, yes going to be/is now very difficult. I just don't have "it" in me any more to handle the things I need to handle with this disease, dr.s, ins. co.'s, etc., any more ... and no one can help me do it ... and my type A would disallows me to count on anyone to do it "right".

I never did care about the body image thing ... I go up and down rapidly, and have a closet full of many sizes. Joe prefers "chunky", so I never have an issue with feeling uncomfortable about being overweight with him. The way I've learned to see it with the weight up and down thing ... I prefer up, that way, when I started going down, I have something to lose.

I liked myself when I was in my healthy, energetic, helpful to others, and fun stage ... now, I feel like a helpless, useless, unproductive, can't even clean or dress, tired, dependent on all person. My senior parents have so much more energy than I do.

I've always had good relationships with "good" people and bad relationships with "bad" people. I am/was initimidating to some I worked with ... they resented that I was well-liked and very good at my job. Now, that I am gone, they are still resentful ... I get e-mails from "friends" at work who tell me that they get mad when people discuss how much they miss me. They are angry my boss is holding my job while no longer having to do so ... my boss is optimistic that I will recover. In the mean time, the resentful individuals are angry they have to do my job and are even angrier when they are told it was done wrong. They blame me for not teaching them ... but, hell ... it's common sense! Anyway, I can't please those individuals, nor do I care ... they are angry when I am working hard, they are angry when I'm not working.

Oh well...just a little comment to your note..

Well wishes and admiration,

Joan

jeri,I'm going to insert my totally unsolicited and slightly weird advice concerning your closing "I promise to be back to my old self soon."Someone recently printed the steps of grief. I totally agree with those, but there are so many different layers of struggle/disease/loss for those of us with multi-systemic/neurosarc that I have had to broaden those ideas, at least for myself. Think of layer one -- for those of us who are struck fast and hard -- there is the multi-layer struggle that is almost the most unbearable: We don't have our symptoms or pain under control, so we certainly can't keep our emotions under control just when our egos are dealt the biggest blows of our lives -- the doctors, and sometimes even our friends, families, in-laws, doubt our sincerity, our sanity, our competence. Most of us were overachieving type A's (I had a neuro tell me I was a quadruple A and that's why I got so incredibly sick so quickly), and this very well may have been the first time in our lives any one has ever doubted us, or doubted our intuition. On top of all that, we are expected to keep track of test, reports, insurance companies, and the lovely Social Security System. Stop here! I think we all deserve Olympic-style Gold medals for surviving step one (I know many of you are still there -- and like raising children, I swear it does get easier!)Step two: Whether we have come out of step one or not (usually not) we have to face facts that our abilities and our self-image is changing. Again, the more of an overachiever you are, the longer this step will take, since you will continue to chase your tail, making yourself exhausted and stressed out, and no matter how much you pull on those bootstraps you've always depended on, they snap-- a lot like a chinese finger trap.And then there is the body image problem. The weight gain. At first we may yo-yo, trying like hell to get "back in shape" whenever we have any type of small remission. And how long does it take us to figure out that the harder we try to exercise off the weight, the faster we lose that small remission. And then we have to, somehow, accept our new body image. For some of us that self acceptance may never happen. I know it ebbs and flows for me, especially since I had stayed the same size from age 12 to age 36. I was raised to be "fat phobic," and even though I had one year of therapy, and it took me another five years to really deal with it -- just this year.There are so many other stages, but I'm tiring out and I am going to give you all a break and get to the point. I realized, very recently, that I actually like myself much, much better than I ever have in my life. I don't want to get into specifics, but this realization had improved my relationships with everyone around me, especially my husband. And it's great to finally have long-lasting, meaningful relationships with women -- all whom I have met since I have been ill and at least fifty pounds heavier than when I started all this (I'm ninety pounds over right now, and I really don't mind at all -- I know I should, but I'm commfortable like this. Go figure). When I was chasing "perfection" I was intimidating to other women, and I never knew why. Now there's nothing intimidating about me, and I love not spending so much time worrying about a hair being out of place, or every bit of my wordrobe being crisp, stylish, and projecting the "right" image.So, Jeri, what I wish for you is not to get back to your old self, but for you to arrive at a new self that is equipped to kick butt when you need to (and I know you are facing many trials right now) and when you don't, you can spend that time learning to love the new you -- just as we are doing -- you are quite loveable!

[Guest guest]

Well, I doubt? our insurance co.'s will pay unless we convince them this may be a possible end to funding our on-going medical issues, but I wonder if our congressperson can help in getting appropriated funding?...Man, I sure do have lots of answers, don't it?!?! ... LOL!

that's what I did, Joan. She has since called to ask if I was interested. But if I have to pay the cost myself, the answer will be nope. I'm going to talk to my doc about it. rose

Re: adult stem cell study-Rose, etc.

Hi Jeri,

Where did you find the application?...I found the website, but no application. Did you have to contact the dr.'s office?

Thanks very much,

Joan