frustrated

[Guest guest]

, I would give you a hug if I knew it wouldn't hurt so bad... I get

down at times too. I don't think we would be normal if we didn't... I've

been scared too... RP can be very scarey in the beginning...

I'm sorry if I've asked this before( my memory is the pits...if it is there

at all) Are you on anything for the flares? Sounds like whatever you are on

aren't controlling the flares. You shouldn't have to be in that much

pain... You MUST get your flares under control.

You just go ahead and vent any time you want... That's why we are here... You

may also call me any time if you need to talk ... Call me

collect.

I have had my share of pity parties and there is nothing wrong with them...

We have that right...It is discouraging, but I think once you get your flares

under a little better control you will feel better.

Your bed sounds wonderful!!! What a great sister you must have...

Be sure to let us know how you are in the morning.... There are plenty of

shoulders to lean on here.

Sending all my love and gentle hugs

[Guest guest]

, I would give you a hug if I knew it wouldn't hurt so bad... I get

down at times too. I don't think we would be normal if we didn't... I've

been scared too... RP can be very scarey in the beginning...

I'm sorry if I've asked this before( my memory is the pits...if it is there

at all) Are you on anything for the flares? Sounds like whatever you are on

aren't controlling the flares. You shouldn't have to be in that much

pain... You MUST get your flares under control.

You just go ahead and vent any time you want... That's why we are here... You

may also call me any time if you need to talk ... Call me

collect.

I have had my share of pity parties and there is nothing wrong with them...

We have that right...It is discouraging, but I think once you get your flares

under a little better control you will feel better.

Your bed sounds wonderful!!! What a great sister you must have...

Be sure to let us know how you are in the morning.... There are plenty of

shoulders to lean on here.

Sending all my love and gentle hugs

[Guest guest]

Hi, we all HATE IT AND ARE SCARED....I wish I had a magic wand!

There are medications for pain and also for depression. This is a major deal

with us RP'ers.

This disease is very hard to deal with. For me is the uncertainity of it. The

family expects us to be " normal " because there isn't any real thing they can

see.

Just please, please, know you are not alone. We are all in the same boat,

just kind of different. These problems your having will go away and you may

be pain free.

Please see your doctor again and explain what's going on.

Your friend...Sue M

[Guest guest]

Hi, we all HATE IT AND ARE SCARED....I wish I had a magic wand!

There are medications for pain and also for depression. This is a major deal

with us RP'ers.

This disease is very hard to deal with. For me is the uncertainity of it. The

family expects us to be " normal " because there isn't any real thing they can

see.

Just please, please, know you are not alone. We are all in the same boat,

just kind of different. These problems your having will go away and you may

be pain free.

Please see your doctor again and explain what's going on.

Your friend...Sue M

[Guest guest]

, I'm so glad you are a bit better today... Gosh I worried about you

last nite. A good cry does wonders, doesn't it??? I'm so glad you have a

supportive partner. I'm lucky too... I have a very supportive family. Just

remember to take " baby steps " .

One little step at a time... It will get you through.

Please don't forget we are all here for you.

hugs

[Guest guest]

, I'm so glad you are a bit better today... Gosh I worried about you

last nite. A good cry does wonders, doesn't it??? I'm so glad you have a

supportive partner. I'm lucky too... I have a very supportive family. Just

remember to take " baby steps " .

One little step at a time... It will get you through.

Please don't forget we are all here for you.

hugs

[Guest guest]

--- mmjw3 wrote:

I

> HATE THIS! AND I'M SCARED!

Welcome to the club! We all have days (week, months)

like this. I get this way everytime the doctor wants

to start me on a new medication-like now.

It does get better as you get on the right medicines

and begin to feel better physically, your outlook gets

better too.

Hang in there. Sharon

=====

__________________________________________________

[Guest guest]

--- mmjw3 wrote:

I

> HATE THIS! AND I'M SCARED!

Welcome to the club! We all have days (week, months)

like this. I get this way everytime the doctor wants

to start me on a new medication-like now.

It does get better as you get on the right medicines

and begin to feel better physically, your outlook gets

better too.

Hang in there. Sharon

=====

__________________________________________________

[Guest guest]

thank you and I'm doing better this morning. I don't think I'd

emotionally let go enough after being diagnosed with this and I think

I needed to cry last night, which I did. My partner, Jeaneen, was

very supportive and I know I'll get through this. Thanks and take

care!

> I

> > HATE THIS! AND I'M SCARED!

>

> Welcome to the club! We all have days (week, months)

> like this. I get this way everytime the doctor wants

> to start me on a new medication-like now.

>

> It does get better as you get on the right medicines

> and begin to feel better physically, your outlook gets

> better too.

>

> Hang in there. Sharon

>

> =====

>

>

> __________________________________________________

>

[Guest guest]

thank you and I'm doing better this morning. I don't think I'd

emotionally let go enough after being diagnosed with this and I think

I needed to cry last night, which I did. My partner, Jeaneen, was

very supportive and I know I'll get through this. Thanks and take

care!

> I

> > HATE THIS! AND I'M SCARED!

>

> Welcome to the club! We all have days (week, months)

> like this. I get this way everytime the doctor wants

> to start me on a new medication-like now.

>

> It does get better as you get on the right medicines

> and begin to feel better physically, your outlook gets

> better too.

>

> Hang in there. Sharon

>

> =====

>

>

> __________________________________________________

>

[Guest guest]

hello

Don't be ashamed; I 'm sure all of RP'ers have had the same feeling than you.

Yesterday my daughter Coralie who's in flare cried in her bed.

She said "why me, why often for christmas" I'll say you what i said her

"beleive, in god, in your mother (or your family) and specaily in you"

We are all around you an we all try to help each other.

Coralie is 14 years old and was dx rp since 7 years.

The doctor gave her a new medication and she''s taking "morphin".

Now she feels better, less pains.

AN happy christmas for you from France.

Marie-Pia

[Guest guest]

hello

Don't be ashamed; I 'm sure all of RP'ers have had the same feeling than you.

Yesterday my daughter Coralie who's in flare cried in her bed.

She said "why me, why often for christmas" I'll say you what i said her

"beleive, in god, in your mother (or your family) and specaily in you"

We are all around you an we all try to help each other.

Coralie is 14 years old and was dx rp since 7 years.

The doctor gave her a new medication and she''s taking "morphin".

Now she feels better, less pains.

AN happy christmas for you from France.

Marie-Pia

[Guest guest]

Hi Loriann sorry to hear about Lucas, I wish I could offer more but I afraid I cant. But I will be thinking of all of you. Sometimes I think dealing with Doctors is worse that this darn disease. Take care, hope it gets better.

Patty farm girl you know who!!!

[Guest guest]

April- Well it sounds like your posting here and going and getting weighed shows that deep down you want the surgery and you dont want to give up, maybe its just going to take you longer than you thought. Hang in there < Best of Luck Colleenlynnethomas42 wrote: Hello everyoneI'm still working on my 10% about a yearand I gained 5lb over the holiday---and the last time I weight in was Nov-- and I just weight in again last week---- I know it not a race-- but I am ready for the surgery---I feel like giving up--- but I not.April

Colleen

[Guest guest]

April- Well it sounds like your posting here and going and getting weighed shows that deep down you want the surgery and you dont want to give up, maybe its just going to take you longer than you thought. Hang in there < Best of Luck Colleenlynnethomas42 wrote: Hello everyoneI'm still working on my 10% about a yearand I gained 5lb over the holiday---and the last time I weight in was Nov-- and I just weight in again last week---- I know it not a race-- but I am ready for the surgery---I feel like giving up--- but I not.April

Colleen

[Guest guest]

April, your thought process is right on track. This

is NOT a race and just like the rest of us that have

gone before you, we too wanted to hurry up and get the

10% off to have our surgery. While you are in this

phase of the process, just take this time to do as

much research as you can and attend as many support

group meetings prior to having the procedure. Also,

remember that everyone's 10% is different. While one

person may have 20 something pounds to lose, others

have had to lose much more than that. There is a

gentleman on here that has to lose 125 pounds or had

to lose 125 pounds but I think he might be very close.

If I can offer any suggestions to help you try and

accelerate your loss, it would be to eat protein,

protein, protein, drink water, and stay away from

sugar and a lot of the carbs (I personally would say

eliminate them but not everyone can do this). If you

can get some exercise in, then get in a minimum of 20

minutes...30 if possible. That could be something as

simple as taking a walk. Walk for 15 minutes then

turn around and come back, letting it take you 15

minutes to get back. That is how you can achieve the

30 minutes. Or you can break your 30 minutes up into

3 10 minute walks or 3 10 minutes of activity.

Although I think it would be better to try and do it

all at one time if possible.

Kaiser has given us the 1200 calorie diet plan but I

personally did not do it. I did Atkins. I stayed on

the induction phase. I lost my 24 pounds in 4 weeks

but I did not have my surgery until well after that so

I stayed on the induction phase until I had surgery

which was from November 16, 2004 until February 8,

2005 (day of surgery). I got approved the last week

in October and November 16th was my orientation. This

was about 3.5 months for me and even though it was

short from start to finish, it seemed like a lifetime.

I would love to hear you post and say that you lost

if doing the 1200 calorie plan because in my humble

opinion, this preps you to eat the way you will be

eating in sorts post surgery. I just shared the

Atkins things as a suggestion and not necessarily for

you to stop what you are doing and do Atkins.

You can do this. Just keep believing and continue to

tell yourself that you can. Once you turn to self

doubt, you could get yourself in a rut that can

sometimes be hard to climb out of. Everyone here

wants to see you succeed and if you stay here or

attend any support group, the number one concern is

your success and seeing you through this and beyond.

Be encouraged and know that we all know it is not easy

but it is attainable.

Pam Marsh

--- lynnethomas42 wrote:

> Hello everyone

>

> I'm still working on my 10% about a yearand I

> gained 5lb over the

> holiday---and the last time I weight in was Nov--

> and I just weight in

> again last week---- I know it not a race-- but I am

> ready for the

> surgery---I feel like giving up--- but I not.

>

> April

>

>

>

>

__________________________________________________

[Guest guest]

April, your thought process is right on track. This

is NOT a race and just like the rest of us that have

gone before you, we too wanted to hurry up and get the

10% off to have our surgery. While you are in this

phase of the process, just take this time to do as

much research as you can and attend as many support

group meetings prior to having the procedure. Also,

remember that everyone's 10% is different. While one

person may have 20 something pounds to lose, others

have had to lose much more than that. There is a

gentleman on here that has to lose 125 pounds or had

to lose 125 pounds but I think he might be very close.

If I can offer any suggestions to help you try and

accelerate your loss, it would be to eat protein,

protein, protein, drink water, and stay away from

sugar and a lot of the carbs (I personally would say

eliminate them but not everyone can do this). If you

can get some exercise in, then get in a minimum of 20

minutes...30 if possible. That could be something as

simple as taking a walk. Walk for 15 minutes then

turn around and come back, letting it take you 15

minutes to get back. That is how you can achieve the

30 minutes. Or you can break your 30 minutes up into

3 10 minute walks or 3 10 minutes of activity.

Although I think it would be better to try and do it

all at one time if possible.

Kaiser has given us the 1200 calorie diet plan but I

personally did not do it. I did Atkins. I stayed on

the induction phase. I lost my 24 pounds in 4 weeks

but I did not have my surgery until well after that so

I stayed on the induction phase until I had surgery

which was from November 16, 2004 until February 8,

2005 (day of surgery). I got approved the last week

in October and November 16th was my orientation. This

was about 3.5 months for me and even though it was

short from start to finish, it seemed like a lifetime.

I would love to hear you post and say that you lost

if doing the 1200 calorie plan because in my humble

opinion, this preps you to eat the way you will be

eating in sorts post surgery. I just shared the

Atkins things as a suggestion and not necessarily for

you to stop what you are doing and do Atkins.

You can do this. Just keep believing and continue to

tell yourself that you can. Once you turn to self

doubt, you could get yourself in a rut that can

sometimes be hard to climb out of. Everyone here

wants to see you succeed and if you stay here or

attend any support group, the number one concern is

your success and seeing you through this and beyond.

Be encouraged and know that we all know it is not easy

but it is attainable.

Pam Marsh

--- lynnethomas42 wrote:

> Hello everyone

>

> I'm still working on my 10% about a yearand I

> gained 5lb over the

> holiday---and the last time I weight in was Nov--

> and I just weight in

> again last week---- I know it not a race-- but I am

> ready for the

> surgery---I feel like giving up--- but I not.

>

> April

>

>

>

>

__________________________________________________

[Guest guest]

I know your fustration. The only advice I can give you is be patient.

OK, stop calling me names. It does take a while, and things do happen.

If you are close to Sacramento, they will be here this weekend {Point

West on Saturday). Come to the classes, even though you are not on

the list, and talk to (the case manager nurse). She is very

helpfull and you can become a face which helps a lot.

Good luck and try a cleansing breath (Just kidding)

>

> I have no clue whats going on. I've been waiting over a month for

> approval from SSF. It wouldn't be so upsetting if I didn't know that

> people who submitted their paperwork are getting approval letters

within

> days and up to 2wks after..from SSF! I can't understand the hold up

> with my paperwork! Doubt its anymore complicated than others. I

called

> them the end of last week and got someone who was in a huge hurry to

get

> off the phone and just told me " its in review " and then practically

hung

> up on me. So...how much longer should I wait until I really start

> bugging them? I haven't even been to the real orientation yet! Any

> advice? I swear...I'm trying to be patient! Just the fact that others

> are getting approved so fast has me worried now.

>

> Connie

> Sacramento, CA

>

[Guest guest]

Please call patients assistance...........SSF lost my paperwork

twice!!!!!!!!!! I had to call patients assistance to track it down

and finally got them to give ME the in house fax to have my doctor

re send everything! I threw such a fit and was then transferred to

Richmond which was a major blessing.

>

> I have no clue whats going on. I've been waiting over a month for

> approval from SSF. It wouldn't be so upsetting if I didn't know

that

> people who submitted their paperwork are getting approval letters

within

> days and up to 2wks after..from SSF! I can't understand the hold

up

> with my paperwork! Doubt its anymore complicated than others. I

called

> them the end of last week and got someone who was in a huge hurry

to get

> off the phone and just told me " its in review " and then

practically hung

> up on me. So...how much longer should I wait until I really start

> bugging them? I haven't even been to the real orientation yet!

Any

> advice? I swear...I'm trying to be patient! Just the fact that

others

> are getting approved so fast has me worried now.

>

> Connie

> Sacramento, CA

>

[Guest guest]

Over here at Richmond the process is that once you finish your Psych

and nutrition evaluation, your primary get's the results and forwards

it to the approval board. If your accounts has already been sent to

the approval board and your just waiting for the letter that says

you've been accepted into the program, well that can take up to 1

month from what I've heard. And then even when you get the letter, it

can take up to 2 months to get into orientation.

LISA

>

> I have no clue whats going on. I've been waiting over a month for

> approval from SSF. It wouldn't be so upsetting if I didn't know

that

> people who submitted their paperwork are getting approval letters

within

> days and up to 2wks after..from SSF! I can't understand the hold

up

> with my paperwork! Doubt its anymore complicated than others. I

called

> them the end of last week and got someone who was in a huge hurry

to get

> off the phone and just told me " its in review " and then practically

hung

> up on me. So...how much longer should I wait until I really start

> bugging them? I haven't even been to the real orientation yet!

Any

> advice? I swear...I'm trying to be patient! Just the fact that

others

> are getting approved so fast has me worried now.

>

> Connie

> Sacramento, CA

>

[Guest guest]

Hi

I have been having cardiac issues for the past two months. I just got

back from the cardiologist and he said that my EKG (done while there),

echo (done a couple of weeks ago), blood pressure and heart rate were

fine, so come back in two years. I have times when I retain 19 pounds

of fluid over about a weeks time and my breathing gets so bad that I

can't roll over in bed without feeling like I can't breath. It is

different than my mito exercise shortness of breath.

I'm hoping the nephologist will shed some light on this after he gets

my test results. I do have several abnormal tests and labs. My 24 hour

calcium was low as was my creatinine clearance is low (may be age

related) and my ultrasound showed a mass ( probably a cyst), so I am

having a kidney CT on Friday. My arterial blood gas showed a low PO2

as well.

Thanks for letting me vent.

laurie

[Guest guest]

Hi Laurie,

Does misery love company!?! Both of my girls do the fluid balance shift

" thing " . No one has been able to decide why or where it comes form, but they

are treated with Lasix and Potassium. Some docs think it is related to vessel

walls that aren't workign properly, others suspect early cardiac failure (with

normal echos)....no physician will take ownership of the problem as their organ

system. In both girls it causes MAJOR breathing issues different form the

" normal mito " related issues.

How low is your pO2? Are they considering supplemental oxygen?

Laurie Fitzgerald laurie.fitzgerald@...> wrote:

Hi

I have been having cardiac issues for the past two months. I just got

back from the cardiologist and he said that my EKG (done while there),

echo (done a couple of weeks ago), blood pressure and heart rate were

fine, so come back in two years. I have times when I retain 19 pounds

of fluid over about a weeks time and my breathing gets so bad that I

can't roll over in bed without feeling like I can't breath. It is

different than my mito exercise shortness of breath.

I'm hoping the nephologist will shed some light on this after he gets

my test results. I do have several abnormal tests and labs. My 24 hour

calcium was low as was my creatinine clearance is low (may be age

related) and my ultrasound showed a mass ( probably a cyst), so I am

having a kidney CT on Friday. My arterial blood gas showed a low PO2

as well.

Thanks for letting me vent.

laurie

Joanne Kocourek (mom to , lies, and )

visit us at: http://www.caringbridge.org/il/annakris

[Guest guest]

Hi Laurie, just keep going for answers I don't think

that doc did to well on diagnosing you, I would did

further. Hopefully you will find out. sorry you are

having lousy feelings. With ya all the way. Vent

anytime, your always there for me.

--- Laurie Fitzgerald laurie.fitzgerald@...>

wrote:

> Hi

>

> I have been having cardiac issues for the past two

> months. I just got

> back from the cardiologist and he said that my EKG

> (done while there),

> echo (done a couple of weeks ago), blood pressure

> and heart rate were

> fine, so come back in two years. I have times when I

> retain 19 pounds

> of fluid over about a weeks time and my breathing

> gets so bad that I

> can't roll over in bed without feeling like I can't

> breath. It is

> different than my mito exercise shortness of breath.

>

> I'm hoping the nephologist will shed some light on

> this after he gets

> my test results. I do have several abnormal tests

> and labs. My 24 hour

> calcium was low as was my creatinine clearance is

> low (may be age

> related) and my ultrasound showed a mass ( probably

> a cyst), so I am

> having a kidney CT on Friday. My arterial blood gas

> showed a low PO2

> as well.

>

> Thanks for letting me vent.

>

> laurie

>

__________________________________________________

[Guest guest]

Dear Laurie,

Gentle hugs,

This too is what I am experiencing? We must be cousins? :-) It is so

frustrating and so " Not normal " for our " age " or " size " or whatever they (Dr)

can come up with!

I feel for you sister.

Hugs,

Elle

Laurie Fitzgerald laurie.fitzgerald@...> wrote:

Hi

I have been having cardiac issues for the past two months. I just got

back from the cardiologist and he said that my EKG (done while there),

echo (done a couple of weeks ago), blood pressure and heart rate were

fine, so come back in two years. I have times when I retain 19 pounds

of fluid over about a weeks time and my breathing gets so bad that I

can't roll over in bed without feeling like I can't breath. It is

different than my mito exercise shortness of breath.

I'm hoping the nephologist will shed some light on this after he gets

my test results. I do have several abnormal tests and labs. My 24 hour

calcium was low as was my creatinine clearance is low (may be age

related) and my ultrasound showed a mass ( probably a cyst), so I am

having a kidney CT on Friday. My arterial blood gas showed a low PO2

as well.

Thanks for letting me vent.

laurie

I am only as strong as the coffee I drink, the hairspray I use and the friends

I have.

To the cool women that have touched my life. Here's to you! author unknown

[Guest guest]

Joanne

I guess compnay is nice to have. I am taking Dyazid, but the shift

changes with or without. I am thought to have Ehler Danlos syndrome,

so the blood vessel idea might apply here.

My PO2 was 68 (range 74-108), but my blood gas O2 sat was 92 so they

are just going to repeat all the pulmonary stuff in Oct (pft, abg,

lung CT) and sleep study in Aug.

Do the girls get such severe breathing issues that they can't do

anything at all? My heart also pounds when I am like this. It lasted

for almost 2 weeks and eveyone just said it was due to obesity. When

the weight doesn't change and the symptoms do, then something new is

going on.

I'll be thinging of the girls. It is a horrible feeling.

laurie

>

>

>

>

>

>

> Hi Laurie,

>

> Does misery love company!?! Both of my girls do the fluid balance shift

> " thing " . No one has been able to decide why or where it comes form, but they

> are treated with Lasix and Potassium. Some docs think it is related to

> vessel walls that aren't workign properly, others suspect early cardiac

> failure (with normal echos)....no physician will take ownership of the

> problem as their organ system. In both girls it causes MAJOR breathing

> issues different form the " normal mito " related issues.

>

> How low is your pO2? Are they considering supplemental oxygen?

>

> Laurie Fitzgerald laurie.fitzgerald@...> wrote: Hi

>

>

> I have been having cardiac issues for the past two months. I just got

> back from the cardiologist and he said that my EKG (done while there),

> echo (done a couple of weeks ago), blood pressure and heart rate were

> fine, so come back in two years. I have times when I retain 19 pounds

> of fluid over about a weeks time and my breathing gets so bad that I

> can't roll over in bed without feeling like I can't breath. It is

> different than my mito exercise shortness of breath.

>

> I'm hoping the nephologist will shed some light on this after he gets

> my test results. I do have several abnormal tests and labs. My 24 hour

> calcium was low as was my creatinine clearance is low (may be age

> related) and my ultrasound showed a mass ( probably a cyst), so I am

> having a kidney CT on Friday. My arterial blood gas showed a low PO2

> as well.

>

> Thanks for letting me vent.

>

> laurie

>

>

>

>

> Joanne Kocourek (mom to , lies, and )

> visit us at: http://www.caringbridge.org/il/annakris

>

>