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Thanks ,

My vent and a general meltdown yesterday afternoon helped relieve the tension a good deal. If the hurricanes all cooperate, I'll be able to go to Florida weekend after next and see the close friends I have there who have been with me through the challenges of the last couple of years. That will be a welcome treat. I haven't wanted to lean on them the last few weeks as they have had their hands full with storm preparations, survival and recovery. It will also help with I have my things here; it is all just stuff but it is stuff that adds comfort and diversion to life.

I am sorry you are struggling physically and emotionally now too. While the root conditions may be different it sounds like we are struggling with the same sorts of feelings. I hope things improve for you soon too.

Shirley

Checking in

Hi everyone,

I hope you are having a good first weekend of autumn (it is my

favorite season). The weather here in NC has been wonderful this week.

Mostly wanted to check in to say I am alive and still here in the

shadows even though I have been very quiet the last week and half.

The doctor's appointment on the 14th left me feeling very defeated and

I needed to retreat into myself for a while. The short version of the

appointment outcome is that I am dealing with a change in hormone

treatment strategy to see what effect that has on the pain. This means

a few weeks of a weird combination of some pregnancy like and some

menopause like symptoms. After my body has time to adjust, I'll

figure out what to try next.

Other than that, classes are keeping me busy. I am still essentially

out of a suitcase but hope to go retrieve my belongings from Florida

in two weeks; assuming the hurricane gods don't destroy the stuff and

cooperate in terms of travel plans.

A long grumpy update and vent are below. I debated whether or not to

delete them as they are both grumpy and whiney.

Shirley

Long Update:

I left the appointment on the 14th feeling unheard, rather hopeless

and very much like I had wasted $200. The bottom line of the

appoitnment was being told that with endo there are no easy answers

(no news there). The doctor laid out things we could try and said

"tell me what you want to do and I'll do it." In his opinion the

treatment developed by the last doctor was making matters worse not

better. That meant my options were: stop the hormone treatment I had

been follwing and see where things are after my body resets itself;

start Lupron for six months to a year(has serious side effects and

only a temporary solution in the best of cases); have another

laparoscopy to vaporize the implants they can and clean up adhesions

(another temporary fix at best and that might create even more

problems, to really be effective the endo would need to be excised but

only a few doctors in the country use that procedure. I have had two

laps in the last 18 months); plan a hysterectomy which might or might

not offer substantial relief.

What I want is someone to help me develop a plan for dealing with the

pain and fatigue so that my life is about more than struggling to

exist. My experience with gynecologists is that they want to focus on

short term bandaids to the problem. I know there is no cure for endo

but there have to be ways to minimize its symptoms and/or cope with

the symptoms better.

Anyway, I opted to take the most reversible and least dramatic option

(my usual strategy when I am unsure what decision to make). I stopped

taking the aygestin and started taking some more herbs and vitamins.

Now it is a matter of waiting for my hormone levels to settle down and

see what happens and how bad things are without the aygestin. I was

warned several times that the next few weeks may be unpleasant.

In the meantime, I am going to try even harder to control the pain and

fatigue through diet and nutrition. I will also try to find some

complimentary treatment options (e.g., accupuncture, herbalism) to

help. If things don't improve by late winter, I am going to seriously

consider a hysterectomy as soon as classes end in May. Even if I

wanted to have it sooner I couldn't because of the amount of recovery

time needed.

For the record, no one here has made me feel the way that is behind

this vent. This group has been wonderfully supportive. The vent is

about general attitudes no one and no group in particular. It is

mostly just a way of getting this out of my system:

I wish the public and the medical profession took endometriosis more

seriously. It is true that it is very seldom life threatening but

that doesn't make the effect it can have on the lives of some people

any milder. It is most likely to be treated as a problem when it

causes infertility. Given my life situation I can't even remotely say

that it is doing that. For me it doesn't even cause uncontrollable

bleeding. For me it is about pain and fatigue the things you can't

measure objectively; things that don't show up on lab tests or x-rays.

That means that to many doctors they are things that don't matter. It

matters to me because it has affected every aspect of my life personal

and professional. It has cost me friends and my research career (or

at least put it at serious risk). I see myself more negatively

because of the things I don't do as well and the things I can't do at

all now. It has taken the last hopes I had for motherhood away. Yet

to many people endometriosis will never mean anything more than "oh

you have PMS and bad cramps" and the fact that it affects by mood and

behaviors is weakness and whining on my part not a real problem.

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

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

When nothing is sure, everything is possible.

--- Margaret Drabble

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

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Don't ever feel like you are a whiner!

It does tend to make one feel horrid when doctors and those close to you just blow off your symptoms like they were nothing.I am going through the same thing right now.They may just be symptoms to them but to me they rule my every day life.

Hang in there and feel free to write whatever is on your mind.I know everyone here is always willing to listen and offer support.

-- Checking in

Hi everyone,

I hope you are having a good first weekend of autumn (it is my

favorite season). The weather here in NC has been wonderful this week.

Mostly wanted to check in to say I am alive and still here in the

shadows even though I have been very quiet the last week and half.

The doctor's appointment on the 14th left me feeling very defeated and

I needed to retreat into myself for a while. The short version of the

appointment outcome is that I am dealing with a change in hormone

treatment strategy to see what effect that has on the pain. This means

a few weeks of a weird combination of some pregnancy like and some

menopause like symptoms. After my body has time to adjust, I'll

figure out what to try next.

Other than that, classes are keeping me busy. I am still essentially

out of a suitcase but hope to go retrieve my belongings from Florida

in two weeks; assuming the hurricane gods don't destroy the stuff and

cooperate in terms of travel plans.

A long grumpy update and vent are below. I debated whether or not to

delete them as they are both grumpy and whiney.

Shirley

Long Update:

I left the appointment on the 14th feeling unheard, rather hopeless

and very much like I had wasted $200. The bottom line of the

appoitnment was being told that with endo there are no easy answers

(no news there). The doctor laid out things we could try and said

"tell me what you want to do and I'll do it." In his opinion the

treatment developed by the last doctor was making matters worse not

better. That meant my options were: stop the hormone treatment I had

been follwing and see where things are after my body resets itself;

start Lupron for six months to a year(has serious side effects and

only a temporary solution in the best of cases); have another

laparoscopy to vaporize the implants they can and clean up adhesions

(another temporary fix at best and that might create even more

problems, to really be effective the endo would need to be excised but

only a few doctors in the country use that procedure. I have had two

laps in the last 18 months); plan a hysterectomy which might or might

not offer substantial relief.

What I want is someone to help me develop a plan for dealing with the

pain and fatigue so that my life is about more than struggling to

exist. My experience with gynecologists is that they want to focus on

short term bandaids to the problem. I know there is no cure for endo

but there have to be ways to minimize its symptoms and/or cope with

the symptoms better.

Anyway, I opted to take the most reversible and least dramatic option

(my usual strategy when I am unsure what decision to make). I stopped

taking the aygestin and started taking some more herbs and vitamins.

Now it is a matter of waiting for my hormone levels to settle down and

see what happens and how bad things are without the aygestin. I was

warned several times that the next few weeks may be unpleasant.

In the meantime, I am going to try even harder to control the pain and

fatigue through diet and nutrition. I will also try to find some

complimentary treatment options (e.g., accupuncture, herbalism) to

help. If things don't improve by late winter, I am going to seriously

consider a hysterectomy as soon as classes end in May. Even if I

wanted to have it sooner I couldn't because of the amount of recovery

time needed.

For the record, no one here has made me feel the way that is behind

this vent. This group has been wonderfully supportive. The vent is

about general attitudes no one and no group in particular. It is

mostly just a way of getting this out of my system:

I wish the public and the medical profession took endometriosis more

seriously. It is true that it is very seldom life threatening but

that doesn't make the effect it can have on the lives of some people

any milder. It is most likely to be treated as a problem when it

causes infertility. Given my life situation I can't even remotely say

that it is doing that. For me it doesn't even cause uncontrollable

bleeding. For me it is about pain and fatigue the things you can't

measure objectively; things that don't show up on lab tests or x-rays.

That means that to many doctors they are things that don't matter. It

matters to me because it has affected every aspect of my life personal

and professional. It has cost me friends and my research career (or

at least put it at serious risk). I see myself more negatively

because of the things I don't do as well and the things I can't do at

all now. It has taken the last hopes I had for motherhood away. Yet

to many people endometriosis will never mean anything more than "oh

you have PMS and bad cramps" and the fact that it affects by mood and

behaviors is weakness and whining on my part not a real problem.

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

The Being Sick Community

Message Archives-/messages

Chat:- Scheduled Chats at

/chat

Bookmarks:-

Add a website URL you have found useful.

/links

Personal Complaints or problems:-

Please contact a moderator

email: -owner

Subscription Details:-

1) Individual email - means that every email sent to the list you receive.

2) Daily Digest - sends you 25 messages in one single email for you to browse. This is an excellent option if you receive alot of email.

3) Web only/No mail - means that you can pop into groups at your convenience and receive no email.

To modify your subscription settings please visit:-

/join

To subscribe or unsubscribe please email:-

-subscribe

-unsubscribe

This group is not intended to diagnose or treat illnesses. No one on this group is qualified to diagnose medical conditions. If you feel you need medical attention, seek the advice of a qualified physician.

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

When nothing is sure, everything is possible.

--- Margaret Drabble

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

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  • 2 months later...

Hi De, nice to hear from you...I bet your just dragging, poor dear...KB Motley <dmotley@...> wrote:

Hi, family. I'm alive & well, but just got home from work (almost this late last night) so I'm going to bed shortly.

WWD

When we get tangled up in our problems, God wants us to be still so He can untangle the knot. ~unknown~

Kathy Brunow

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hey colleen. yeah, I had a couple of unplanned cheats last week too. Just

remember, it

probably could have been a lot worse.....:) And isn't it somehow a relief to

get back

to plan, and also, " one holiday down, two more to go " , plus of course the

dreaded

holiday parties... Wow, I think I'm going to try to maybe try the " eat a protein

bar right

before " plan, to keep all of the tempting goodies to a minimum. Does anybody

have

any other little tricks like that? Surely there is going to be some off plan

eating, ( I

mean lets be realistic) the trick is to not let go of bfl altogether,- hell. I'd

be really

proud of myself just to maintain until january 2nd. I guess I better make a plan

for all

these get-togethers and cookie tins and such, otherwise - " if you don't plan, ya

plan

to fail! "

>

> Hello there. It's been a week I think since I've been able to check

> in. The holidays were ok. Workout wise I was 100%. Eating...well

> Thursday want as planned. I stayed on track all day, even made BFL

> dinner but let myself have a piece of pie. Friday I did great...then

> we went to a friends to play cards...hd one drink, then two and then

> shots. Drats. Then Saturday and Sunday I was attacked by Milk

> Duds :( Double drats. This week I have been back on plan tho!

>

> Hope everyone is doing great!

>

> Colleen

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>

> Wow, I think I'm going to try to maybe try the " eat a protein bar

right before " plan, to keep all of the tempting goodies to a

minimum. Does anybody have any other little tricks like that?

Surely there is going to be some off plan eating, ( I

> mean lets be realistic) the trick is to not let go of bfl

altogether,- hell. I'd be really proud of myself just to maintain

until january 2nd. I guess I better make a plan for all

> these get-togethers and cookie tins and such, otherwise - " if you

don't plan, ya plan to fail! "

I only have a " semi-plan " and that is not to do an entire free day

if I have an event/party to go to. I'll be doing free meals instead,

which are mentally harder for me. But I CAN DO IT :) I've also

increased my cardio one more session a week until the end of the

year. I also plan/allow for certain treats, like the pie on

Thanksgiving. It helped me not feel guilty and not over do it...that

day anyway!

Colleen

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  • 4 months later...
Guest guest

Good girl !!!

Steve and I went on our 1st, believe it or not, overnight outing without

and last night. One of the lady's that I babysit for gave us a free one

night's stay at a nice motel in our area. My friend who has 2 children close to

the ages of and Nate took care of them for us. They had a blast and so did

we.

It's good to see you back with us!!!! How is your Mom, your sister and her

husband doing? Are you still working for your sister?

Love ya!!!

Liz

--

Hi everyone,

Yesterday I did 50 LL breaths and today I did 50.

Love,

C

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Guest guest

Thanks Lizzy,

Sounds like you had a great time!!! you deserved it!

Everyone here is doing weel, mom is getting a little slower but she just

keeps trucking!! She'll be 87 this summer and considering all the illnesses

she has stacked up against her, she never feels sorry for herself. I hope I

can be half as strong as she is when I'm that age. Hubby is fine, and I am

still at the coffee shop and working harder than ever but still loving it,

at least most of the time!!

How are your mom, Kista, Steve and the little ones and your brothers?

Love,

On 4/17/05, lizkins9@... <Lizkins9@...> wrote:

>

>

> Good girl !!!

>

> Steve and I went on our 1st, believe it or not, overnight outing without

> and last night. One of the lady's that I babysit for gave us a

> free one night's stay at a nice motel in our area. My friend who has 2

> children close to the ages of and Nate took care of them for us. They

> had a blast and so did we.

>

> It's good to see you back with us!!!! How is your Mom, your sister and her

> husband doing? Are you still working for your sister?

>

> Love ya!!!

> Liz

> --

>

>

> Hi everyone,

> Yesterday I did 50 LL breaths and today I did 50.

> Love,

> C

>

>

> What can changing the way you breathe do for you? Everything!

> See why tens of thousands agree, Life Lift is the best!

> http://www.oxygenzoo.com

>

>

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

> *

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Guest guest

Steve, , and are fine. Steve still has his burping problems and I

guess he always will.

My Mom has carpal tunnel so she has to have her hands operated on. She's afraid

because of the anestesia with all of her other health problems. Kista's doing

great!!!! She has a very nice man in her life, no wedding date has been set, but

I'm sure that it will. She also just bought a house and she's very excited about

that.

Skeeter is a little better. He has lost quite a bit of weight and has actually

been exercising some, which is a miracle. All of my other brothers are doing

pretty well. I sure miss Pete and though. I need to pray that they move to

Ohio.

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Guest guest

Lizzy

Glad to things are on the uP!!!!

You deserve it!

R

Re: checking in

Steve, , and are fine. Steve still has his burping problems and I

guess he always will.

My Mom has carpal tunnel so she has to have her hands operated on. She's

afraid because of the anestesia with all of her other health problems. Kista's

doing great!!!! She has a very nice man in her life, no wedding date has been

set, but I'm sure that it will. She also just bought a house and she's very

excited about that.

Skeeter is a little better. He has lost quite a bit of weight and has actually

been exercising some, which is a miracle. All of my other brothers are doing

pretty well. I sure miss Pete and though. I need to pray that they move to

Ohio.

What can changing the way you breathe do for you? Everything!

See why tens of thousands agree, Life Lift is the best!

http://www.oxygenzoo.com

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

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Guest guest

Thanks for the update

I was wondering about your MOM and the coffee shop just wish it was closer

My mom has been going down hill alot this year! Especially with living with us

I see it more

It is hard to watch.

Love ya

R

Re: checking in

Thanks Lizzy,

Sounds like you had a great time!!! you deserved it!

Everyone here is doing weel, mom is getting a little slower but she just

keeps trucking!! She'll be 87 this summer and considering all the illnesses

she has stacked up against her, she never feels sorry for herself. I hope I

can be half as strong as she is when I'm that age. Hubby is fine, and I am

still at the coffee shop and working harder than ever but still loving it,

at least most of the time!!

How are your mom, Kista, Steve and the little ones and your brothers?

Love,

On 4/17/05, lizkins9@... <Lizkins9@...> wrote:

>

>

> Good girl !!!

>

> Steve and I went on our 1st, believe it or not, overnight outing without

> and last night. One of the lady's that I babysit for gave us a

> free one night's stay at a nice motel in our area. My friend who has 2

> children close to the ages of and Nate took care of them for us. They

> had a blast and so did we.

>

> It's good to see you back with us!!!! How is your Mom, your sister and her

> husband doing? Are you still working for your sister?

>

> Love ya!!!

> Liz

> --

>

>

> Hi everyone,

> Yesterday I did 50 LL breaths and today I did 50.

> Love,

> C

>

>

> What can changing the way you breathe do for you? Everything!

> See why tens of thousands agree, Life Lift is the best!

> http://www.oxygenzoo.com

>

>

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

> *

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Guest guest

Lizzy

So glad you had a evening away

It has been awhile since you had some special time

Awesome! I hope it was great

love ya

R

Re: checking in

Good girl !!!

Steve and I went on our 1st, believe it or not, overnight outing without

and last night. One of the lady's that I babysit for gave us a free

one night's stay at a nice motel in our area. My friend who has 2 children close

to the ages of and Nate took care of them for us. They had a blast and so

did we.

It's good to see you back with us!!!! How is your Mom, your sister and her

husband doing? Are you still working for your sister?

Love ya!!!

Liz

--

Hi everyone,

Yesterday I did 50 LL breaths and today I did 50.

Love,

C

What can changing the way you breathe do for you? Everything!

See why tens of thousands agree, Life Lift is the best!

http://www.oxygenzoo.com

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

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Guest guest

I'm sorry to hear about your mom, Liz and hope all goes well. I will

continue to pray for all of you.

Tell Kista that I am so happy for her!! She deserves a great guy and lots of

love and happines!

Love,

On 4/17/05, lizkins9@... <Lizkins9@...> wrote:

>

>

> Steve, , and are fine. Steve still has his burping problems

> and I guess he always will.

>

> My Mom has carpal tunnel so she has to have her hands operated on. She's

> afraid because of the anestesia with all of her other health problems.

> Kista's doing great!!!! She has a very nice man in her life, no wedding date

> has been set, but I'm sure that it will. She also just bought a house and

> she's very excited about that.

>

> Skeeter is a little better. He has lost quite a bit of weight and has

> actually been exercising some, which is a miracle. All of my other brothers

> are doing pretty well. I sure miss Pete and though. I need to pray that

> they move to Ohio.

>

>

> What can changing the way you breathe do for you? Everything!

> See why tens of thousands agree, Life Lift is the best!

> http://www.oxygenzoo.com

>

>

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

> *

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Guest guest

Good for you ! I pretty much did the same thing while sitting here in my

chair. Isn't it awesome that we can do LL no matter what the circumstances?

with love,

Jenni

Proud Air Force Mom!

May God guide and protect our troops!

Checking in

Well, today I didn't get in a full 40 breaths at one time but did 10 at a

time throughout the day whenever I had time.

Love,

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Guest guest

Boy isn't that the truth!!! I have been doing LL for at least 5 years now

and I still don't ever get tired of it. It is the easiest way in the world

to stay in shape!!

Love,

On 4/18/05, The Good Book <the-good-book@...> wrote:

>

> Good for you ! I pretty much did the same thing while sitting here in

> my chair. Isn't it awesome that we can do LL no matter what the

> circumstances?

>

> with love,

> Jenni

> Proud Air Force Mom!

> May God guide and protect our troops!

> Checking in

>

>

> Well, today I didn't get in a full 40 breaths at one time but did 10 at a

> time throughout the day whenever I had time.

> Love,

>

>

>

>

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Guest guest

Thanks !!!!

Love ya!!!

Liz

---

I'm sorry to hear about your mom, Liz and hope all goes well. I will

continue to pray for all of you.

Tell Kista that I am so happy for her!! She deserves a great guy and lots of

love and happines!

Love,

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Guest guest

I think I might have at least a year of 80 to even begin to catch up with

you Lizzy!!!! You're my inspiration!!!!!

Love,

On 4/19/05, lizkins9@... <Lizkins9@...> wrote:

>

>

> Wow !!!! You did better than me today!!!! You go girl!!!!

>

> Love ya!!!

> Liz

> --

> today I did 80 LL breaths.

> Love,

>

>

>

>

>

> What can changing the way you breathe do for you? Everything!

> See why tens of thousands agree, Life Lift is the best!

> http://www.oxygenzoo.com

>

>

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

> *

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Guest guest

On 4/20/05, <diana.clem@...> wrote:

>

> I think I might have at least a year of 80 to even begin to catch up with

> you Lizzy!!!! You're my inspiration!!!!!

> Love,

>

>

> On 4/19/05, lizkins9@... <Lizkins9@...> wrote:

> >

> >

> > Wow !!!! You did better than me today!!!! You go girl!!!!

> >

> > Love ya!!!

> > Liz

> > --

> > today I did 80 LL breaths.

> > Love,

> >

> >

> >

> >

> >

> > What can changing the way you breathe do for you? Everything!

> > See why tens of thousands agree, Life Lift is the best!

> > http://www.oxygenzoo.com

> >

> >

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

> > *

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