Hello everyone.

[Guest guest]

I do!

Now that I have the permanent spinal stimulator in place I was very

disappointed to find out I'll never be able to pick up anything on the

floor or the ground as you can't lean over! I had no idea that I'd

have this limitation.

So now my husband must load and unload the bottom rack on the

dishwasher, turn on and off the garden hose-pick up the hose nozzle

from the ground and hand to me, put the clothes in and out of the

dryer, feed the dogs and give them fresh water, and so on.

Before my back injury I had a very successful career-designing and

sourcing home and garden items all over the world. Now I am lucky to

drive for 10 minutes. I was very independant and did everything

myself including gardening, carrying my luggage, you know normal

everyday stuff.

Going again today for another reprogramming, this is the 6th time,

hope they get it correct as my ribs are so dang sore. This didn't

happen with the temporary inplant.

-Anne

>

>

> I hope everyone is doing well. I have not posted in awhile. This

> coming Wednesday I'm having the trial surgery. If anyone can give me

> advice as to what to expect it would be greatly appreacheated (sp).

> Also if anyone has any clue what to do in the meantime. It's just

> that the nerve pain has gotten so bad and, of course with no sleep

> things are extra bad. Also does anyone ever feel like they are a

> burden on any or everyone.

>

> Thanks so much.

> If everyone could keep me in their prayers for Wednesday I would

> geatly appreacheated (sp)(again).

[Guest guest]

Hi -Anne,

I'm sorry you're having so many problems but I don't understand what you mean

about not being able to bend, or lean over. That's true for the first 6 weeks

after surgery, but I've never heard of that at all as a long term effect.

Possibly the extent of your injury is such that prohibits you from bending over,

but I do that all day long, and also am able to drive over an hour at a time

where before the surgery I couldn't drive for more than 15 minutes without

having to stop and get out and stretch.

Take care,

Jeff-NY/PA

Moderator

Re: Hello everyone.

I do!

Now that I have the permanent spinal stimulator in place I was very

disappointed to find out I'll never be able to pick up anything on the

floor or the ground as you can't lean over! I had no idea that I'd

have this limitation.

So now my husband must load and unload the bottom rack on the

dishwasher, turn on and off the garden hose-pick up the hose nozzle

from the ground and hand to me, put the clothes in and out of the

dryer, feed the dogs and give them fresh water, and so on.

Before my back injury I had a very successful career-designing and

sourcing home and garden items all over the world. Now I am lucky to

drive for 10 minutes. I was very independant and did everything

myself including gardening, carrying my luggage, you know normal

everyday stuff.

Going again today for another reprogramming, this is the 6th time,

hope they get it correct as my ribs are so dang sore. This didn't

happen with the temporary inplant.

-Anne

>

>

> I hope everyone is doing well. I have not posted in awhile. This

> coming Wednesday I'm having the trial surgery. If anyone can give me

> advice as to what to expect it would be greatly appreacheated (sp).

> Also if anyone has any clue what to do in the meantime. It's just

> that the nerve pain has gotten so bad and, of course with no sleep

> things are extra bad. Also does anyone ever feel like they are a

> burden on any or everyone.

>

> Thanks so much.

> If everyone could keep me in their prayers for Wednesday I would

> geatly appreacheated (sp)(again).

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

[Guest guest]

HI Ilena, Welcome to a great group of people.

I cannot give advice, but I read most of the emails and know that there are some very smart members here. Jo Lynne being one of them. And they do chime in as time permits regularly.

For me I am fortunate at this time, I have very little complaints, although I am on constant contact with the doctors. My Fattty Liver Disease, NASH ( nonalcoholic steatohepatitis ), which may or may not be combined with PBC (Primary Biliary Cirrhosis) is constantly keeping me allert. I definitely have all kinds of autoimmune disease problems, like diabetes, tiredness, sometimes annemia, asthma, itchy skin ( diagnosed at one time as Discoid Lupus) etc. The last occurence that all is still not perfect was a three inch scrape on the side of my leg that would not healwith the best bacterial ointment, and Hydrogen Peroxide etc. It was just getting bigger and bigger and reder at the edges, when I remembered that this happened about 2 years ago also and I started using my lupus ointment,( I forget the name). Ah and lo and behold 3 days later it is healed.

Our bodies are crazy, and all different, and reactions can be as many as there are patients. so learn everything you can about your own tolerance, and do not be affraid that you are "whinning" to the doctors. I do believe they need all the help they can get, and sometimes you have to go to different ones, because the one you went to is not looking with new eyes.

And we are here to listen to you, even if we cannot help. Clara from OR

ps. You are not Hungarian by any chance? Your name sounds like you might be.

[ ] Hello everyone. I am new to the group...

Hello all. I came across your group a few days ago and "lurked" a bit before working up the courage to join. Many thanks to Jo Lynne and Joanne for being so welcoming.In short, I am 42 years old, and had my transplant on August 2 2004. I have PSC, related to IBD which I have had for 20 years or so. My PSC was diagnosed 4 or 5 years ago - so much has happened in the interim, I can't remember all the dates! My sister's husband was my generous donor.There were various complications during the past year, stricture etc and have had MANY procedures and medication changes. I feel like I am on the mend now, and I am thinking about returning to work part-time sometime in the Fall. I am particularly interested in hearing about other peoples experiences, reactions to medications etc. as I always feel as if I am whining to the doctor and I dont think that I can bore my family and friends with the day to day details any more!!!Well, that wasnt short...so, thank you for listening and I look forward to "meeting" you all.Ilena

[Guest guest]

Hi Clara, thanks for your note. Yes, I am an autoimmune nightmare as well, psoriasis, arthritis etc. As you know, it is a never ending story. I am not a complainer in general, so I probably read more into the situations than is there!! I'll listen to you guys, and I'm sure that will make me feel better about it! Hungarian, no,but some Russian heritage in my family history.

Clara Shelton <cshelton33@...> wrote:

HI Ilena, Welcome to a great group of people.

I cannot give advice, but I read most of the emails and know that there are some very smart members here. Jo Lynne being one of them. And they do chime in as time permits regularly.

For me I am fortunate at this time, I have very little complaints, although I am on constant contact with the doctors. My Fattty Liver Disease, NASH ( nonalcoholic steatohepatitis ), which may or may not be combined with PBC (Primary Biliary Cirrhosis) is constantly keeping me allert. I definitely have all kinds of autoimmune disease problems, like diabetes, tiredness, sometimes annemia, asthma, itchy skin ( diagnosed at one time as Discoid Lupus) etc. The last occurence that all is still not perfect was a three inch scrape on the side of my leg that would not healwith the best bacterial ointment, and Hydrogen Peroxide etc. It was just getting bigger and bigger and reder at the edges, when I remembered that this happened about 2 years ago also and I started using my lupus ointment,( I forget the name). Ah and lo and behold 3 days later it is healed.

Our bodies are crazy, and all different, and reactions can be as many as there are patients. so learn everything you can about your own tolerance, and do not be affraid that you are "whinning" to the doctors. I do believe they need all the help they can get, and sometimes you have to go to different ones, because the one you went to is not looking with new eyes.

And we are here to listen to you, even if we cannot help. Clara from OR

ps. You are not Hungarian by any chance? Your name sounds like you might be.

[ ] Hello everyone. I am new to the group...

Hello all. I came across your group a few days ago and "lurked" a bit before working up the courage to join. Many thanks to Jo Lynne and Joanne for being so welcoming.In short, I am 42 years old, and had my transplant on August 2 2004. I have PSC, related to IBD which I have had for 20 years or so. My PSC was diagnosed 4 or 5 years ago - so much has happened in the interim, I can't remember all the dates! My sister's husband was my generous donor.There were various complications during the past year, stricture etc and have had MANY procedures and medication changes. I feel like I am on the mend now, and I am thinking about returning to work part-time sometime in the Fall. I am particularly interested in hearing about other peoples experiences, reactions to medications etc. as I always feel as if I am whining to the doctor and I dont think that I can bore my family and friends with the day

to day details any more!!!Well, that wasnt short...so, thank you for listening and I look forward to "meeting" you all.Ilena__________________________________________________

[Guest guest]

Hello

I have never been a member to any type of chat before, however I feel the need

to talk with other people dealing with CML. I am not a person who has this

disease myself, but my loving step-father of 17 years has been diagnosed. He was

diagnosed with this disease 3 years ago and I supose for the most part, I spend

my days ignoring it and pretending it isn't happening. When first diagnosed, no

one in his family could be a possible donor, and with other health problems

inclkuding severe arthritis and ankylosing spondylitis ( arthritis and curvature

of the spine.) his chances of survival duing a bone marrow transplant would only

be 50%. So it was an option he had chosen not to take..Instead he went on

Interferion which did not work for him, so he switched to Gleevec. Which has

been working, but it is so costly and is fearing that it could stop working for

him within the next year..I am 21 years old and care about my father greatly.. I

have a wonderful boyfriend, however he

does not understand what I am going through, and lately I have been facing the

fact my father might not be around to see my graduate university or walk me down

the isle to get married. I am getting very stressed out and thinking of it

often, and he just does not understand. He figures I can't change anything so

when it happens, " it " happens..I am so close to my father, and he is such a good

person, working 6 days a week with this disease and his other diseases and never

complains a day in his lilfe..Eevn though you can tell he is constant pain. It

hurts me to see the father I love so dear getting more feeble each time I see

him..And no one seems to want to talk about it and no one understand why I get

so upset, when it's going to happen anyway. So I wanted to talk to other people

with the disease and who are dealing with loved ones having it for maybe some

advice.

thank you so much.

charla.

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

All new

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

Get news delivered. Enjoy RSS feeds right on your Mail page.

[Guest guest]

Dear Margaret,

thank you for taking the time to write me an email. I wish you luck on your

journey.

Charlotte

Margaret Peake <mpraymond@...> wrote:

Dear Charlotte,

I'm sure someone from the chat group will contract you. I'm a newbee and have

just been diagnosed with CML only 4th day on gleevec so I can't tell you much.

Hopefully you and your dad can find others here to help you through these

difficult times.

Margaret

charlotte kerwin <charcur12@...> wrote:

Hello

I have never been a member to any type of chat before, however I feel the need

to talk with other people dealing with CML. I am not a person who has this

disease myself, but my loving step-father of 17 years has been diagnosed. He was

diagnosed with this disease 3 years ago and I supose for the most part, I spend

my days ignoring it and pretending it isn't happening. When first diagnosed, no

one in his family could be a possible donor, and with other health problems

inclkuding severe arthritis and ankylosing spondylitis ( arthritis and curvature

of the spine.) his chances of survival duing a bone marrow transplant would only

be 50%. So it was an option he had chosen not to take..Instead he went on

Interferion which did not work for him, so he switched to Gleevec. Which has

been working, but it is so costly and is fearing that it could stop working for

him within the next year..I am 21 years old and care about my father greatly.. I

have a wonderful boyfriend, however he

does not understand what I am going through, and lately I have been facing the

fact my father might not be around to see my graduate university or walk me down

the isle to get married. I am getting very stressed out and thinking of it

often, and he just does not understand. He figures I can't change anything so

when it happens, " it " happens..I am so close to my father, and he is such a good

person, working 6 days a week with this disease and his other diseases and never

complains a day in his lilfe..Eevn though you can tell he is constant pain. It

hurts me to see the father I love so dear getting more feeble each time I see

him..And no one seems to want to talk about it and no one understand why I get

so upset, when it's going to happen anyway. So I wanted to talk to other people

with the disease and who are dealing with loved ones having it for maybe some

advice.

thank you so much.

charla.

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

All new

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

Get news delivered. Enjoy RSS feeds right on your Mail page.

[Guest guest]

Charla:

How thoughtful of you to worry about your step-father. He must be quite a

guy. I too have children, although they are much younger than you. Mine are

10, 7 and 20 mos. My long term goal is to walk both my daughters down the

aisle and I constantly tell them to wait as long as they want to get married.

There is not much you can do to make his pain go away, but there is a lot

you can do to lift the spirits of someone dealing with any sort of cancer,

including Leukemia. Mostly, they are low cost things that would be in the

" thoughtful " category. Just calling him to have lunch during the week or

setting

aside special time to go out to dinner or cook something he likes. These are

things that would really lift his spirits. When you are with him be positive

and focus on anything but his illness. He will bring it up if he wants to

talk about it. You can also grab him to go do something he likes, like

watching a football game at a local sports bar or attending a play.

As far as lessoning his pain, there may be things that you can do. I don't

like massages anymore (I bruise too easily now) but my daughter and I did

enjoy a pedicure last Saturday and I got some minor pain relief and she got a

special outing with Dad. Now I am not suggesting your father would like a

pedicure, but there are alternative healing things like massages, reflexology,

light therapy and other things that may lessen his pain. You could investigate

these together. There are free books from various drug companies that you

can send for that offer all sorts of ideas on relief, although none that I

have found that deal with Gleevec or Leukemia side effects specifically.

Also, know that if he does fall of Gleevec, there are medications in the

works that are more powerful and will offer alternatives to him. He will walk

you down that aisle before you know it.

Matt

I know this might be way off the mark, but I admire what you are trying to

do and hope I have given you something you can work with.

[Guest guest]

HI Charla,

I was dxed April of 04 and I am glad your dad can still work, though I know

it has to be rough on him. Your one hell of a daughter to take care of him

like you do, but remember you have to have a life as well. I am not trying

to say back away or anything, but don't go overboard. I am not able to work

myself but I still like to do things for myself. I just tire very easy, and

have side effects. Otherwise I am a normal(well some might debate

that..hehe) 39 year old male. I commend you and honestly think your one hell

of a girl. If you ever need to talk let me know. Have your dad make sure if

he has disability insurance with his job. I did and that has helped me

allot. I also was able to keep my medical insurance through my employer

which REALLY helps. Just when I was down on big corporations Bank of America

has really been good to me. Take care, and we are here when you need to

talk.

Terry

On 10/29/06, charlotte kerwin <charcur12@...> wrote:

>

> Dear Margaret,

>

> thank you for taking the time to write me an email. I wish you luck on

> your journey.

>

> Charlotte

>

> Margaret Peake <mpraymond@...> wrote:

> Dear Charlotte,

>

> I'm sure someone from the chat group will contract you. I'm a newbee and

> have just been diagnosed with CML only 4th day on gleevec so I can't tell

> you much. Hopefully you and your dad can find others here to help you

> through these difficult times.

>

> Margaret

>

> charlotte kerwin <charcur12@...> wrote:

> Hello

>

> I have never been a member to any type of chat before, however I feel the

> need to talk with other people dealing with CML. I am not a person who has

> this disease myself, but my loving step-father of 17 years has been

> diagnosed. He was diagnosed with this disease 3 years ago and I supose for

> the most part, I spend my days ignoring it and pretending it isn't

> happening. When first diagnosed, no one in his family could be a possible

> donor, and with other health problems inclkuding severe arthritis and

> ankylosing spondylitis ( arthritis and curvature of the spine.) his chances

> of survival duing a bone marrow transplant would only be 50%. So it was an

> option he had chosen not to take..Instead he went on Interferion which did

> not work for him, so he switched to Gleevec. Which has been working, but it

> is so costly and is fearing that it could stop working for him within the

> next year..I am 21 years old and care about my father greatly.. I have a

> wonderful boyfriend, however he

> does not understand what I am going through, and lately I have been facing

> the fact my father might not be around to see my graduate university or walk

> me down the isle to get married. I am getting very stressed out and thinking

> of it often, and he just does not understand. He figures I can't change

> anything so when it happens, " it " happens..I am so close to my father, and

> he is such a good person, working 6 days a week with this disease and his

> other diseases and never complains a day in his lilfe..Eevn though you can

> tell he is constant pain. It hurts me to see the father I love so dear

> getting more feeble each time I see him..And no one seems to want to talk

> about it and no one understand why I get so upset, when it's going to happen

> anyway. So I wanted to talk to other people with the disease and who are

> dealing with loved ones having it for maybe some advice.

>

> thank you so much.

>

> charla.

>

> ---------------------------------

> All new

> ---------------------------------

> Get news delivered. Enjoy RSS feeds right on your Mail page.

>

>

[Guest guest]

Matt :

I would like to thank you for your kind words, they have made me consider a

lot of things and hopefully I can suggest some of them with my father. I just

feel guilt because I left the province and if anything happened I would feel

guilty about not being there all the time. But doing things with him when I do

go back home. I am quite lucky to have him as a father figure. You have really

given me some great ideas and I am sure we will have fun times to come. Good

luck to you and your family also.

thank you very much!

charla

mtmaynor@... wrote:

Charla:

How thoughtful of you to worry about your step-father. He must be quite a

guy. I too have children, although they are much younger than you. Mine are

10, 7 and 20 mos. My long term goal is to walk both my daughters down the

aisle and I constantly tell them to wait as long as they want to get married.

There is not much you can do to make his pain go away, but there is a lot

you can do to lift the spirits of someone dealing with any sort of cancer,

including Leukemia. Mostly, they are low cost things that would be in the

" thoughtful " category. Just calling him to have lunch during the week or setting

aside special time to go out to dinner or cook something he likes. These are

things that would really lift his spirits. When you are with him be positive

and focus on anything but his illness. He will bring it up if he wants to

talk about it. You can also grab him to go do something he likes, like

watching a football game at a local sports bar or attending a play.

As far as lessoning his pain, there may be things that you can do. I don't

like massages anymore (I bruise too easily now) but my daughter and I did

enjoy a pedicure last Saturday and I got some minor pain relief and she got a

special outing with Dad. Now I am not suggesting your father would like a

pedicure, but there are alternative healing things like massages, reflexology,

light therapy and other things that may lessen his pain. You could investigate

these together. There are free books from various drug companies that you

can send for that offer all sorts of ideas on relief, although none that I

have found that deal with Gleevec or Leukemia side effects specifically.

Also, know that if he does fall of Gleevec, there are medications in the

works that are more powerful and will offer alternatives to him. He will walk

you down that aisle before you know it.

Matt

I know this might be way off the mark, but I admire what you are trying to

do and hope I have given you something you can work with.

[Guest guest]

Hi. Welcome to our fantastic group. You can always depend on it to

give you good solid points of dealing with CML either as a care

provider or the one living with the disease. The group is always

ready to provide you with choices. Keep researching so that you may

have discussions with your step-dad regarding what questions need to

be asked or if the particular protocal is effective. When I was

diagnosed Feb. 03 they were telling us that we could expect 5-10

years and now they are telling us 25 years using the same levels of

medication. I think that you be able to share your achievements

along life's journey for many years unless something other than CML

steps in the way.

H.

dxd 2/03

Gleevec 3/03

PCRU 11/03

Q-PCR .0013 11/04

>

> Matt :

> Charla:

>

>

[Guest guest]

Hi Rashelle,

You're so very welcome, sweetheart!! I think that Life Lift is the best, and I

think that you and all our other Life Lifters are the very best people in the

world. The cream of the crop, as they say!! So, Rashelle and Everyone else,

please keep up the great work that you are all doing with Life Lift!! Now and

forever!!! Isn't it nice to be able to breathe deeply and fully? It is the

thing that has been making me the happiest and healthiest for the last 10 or 11

months, and I know that it will be the best thing for me for the rest of my

life. So, come on, everyone!! Please join my on my Life Lift breathing

journey!!!

Love always,

Pat

Hello Everyone.

Hello Everyone.

I have been so busy getting ready to leave town for the holidays that I have not

been on line as much as usual. I have missed all of you.

I feel like I am running a marathon, but thankfully I have LifeLift to give me

all the energy I need to keep up with it all.

Thank you, Pat for your uplifting messages. You truly are the best little

LifeLift cheerleader anyone could ask for.

Welcome to all of our new LifeLifters. We have had an abundance of orders from

current LifeLifters who are giving LifeLift as gifts so thank you to all of you

for sharing LifeLift with those you love.

I only have a few minutes before I have to run out to an appointment, but I

wanted to give you all my best wishes and to say thank you to Wanda, Pat and all

of our wonderful LifeLifters who have taken time out of your busy days to write

encouragement to everyone. You are all the best!!!

that was a really sweet message I saw from you.

Meghan, wow! it sounds like you are having the best time traveling all over

Australia. Thanks for sharing your wonderful experiences with us.

Welcome Kisha. I hope by now that you are enjoying the gentle, nurturing ways of

LifeLift.

Molly, thanks for the great story on how you started LifeLift. I loved reading

that you have been a faithful LifeLifter for since 2002. That was the best part

of your message for me. I am so glad you found us. I hope to hear more from you

in the future.

Be Healthy and take good care,

Rashelle

Harness the Powerful Benefits of Oxygen with LifeLift.

Oxygen burns fat, tones muscles, reduces stress

Be healthier with each breath you take with LifeLift

www.oxygenlift. net. LifeLift is the Original Aerobic Breathing

[Guest guest]

Rashelle,

Thank you so much for your welcome to the room. I had never

planned on posting i didn't realize when i did that it was going to

post in the room : O ).

But since i did i want to thank you for your amazing program . I

look forward each day to reading all of the womderful post on this

message board.

And this board keeps me motivated to do my breaths each day.

Molly

>

> Hello Everyone.

>

> I have been so busy getting ready to leave town for the holidays

that I have not been on line as much as usual. I have missed all of

you.

>

> I feel like I am running a marathon, but thankfully I have

LifeLift to give me all the energy I need to keep up with it all.

>

> Thank you, Pat for your uplifting messages. You truly are the best

little LifeLift cheerleader anyone could ask for.

>

> Welcome to all of our new LifeLifters. We have had an abundance of

orders from current LifeLifters who are giving LifeLift as gifts so

thank you to all of you for sharing LifeLift with those you love.

>

> I only have a few minutes before I have to run out to an

appointment, but I wanted to give you all my best wishes and to say

thank you to Wanda, Pat and all of our wonderful LifeLifters who

have taken time out of your busy days to write encouragement to

everyone. You are all the best!!!

>

> that was a really sweet message I saw from you.

>

> Meghan, wow! it sounds like you are having the best time traveling

all over Australia. Thanks for sharing your wonderful experiences

with us.

>

> Welcome Kisha. I hope by now that you are enjoying the gentle,

nurturing ways of LifeLift.

>

> Molly, thanks for the great story on how you started LifeLift. I

loved reading that you have been a faithful LifeLifter for since

2002. That was the best part of your message for me. I am so glad

you found us. I hope to hear more from you in the future.

>

> Be Healthy and take good care,

>

> Rashelle

> Harness the Powerful Benefits of Oxygen with LifeLift.

> Oxygen burns fat, tones muscles, reduces stress

> Be healthier with each breath you take with LifeLift

> www.oxygenlift.net. LifeLift is the Original Aerobic Breathing

>

>

>

>