Re: WHAT a Week! (Semi-OT)

[Guest guest]

Hi Marilyn,

I so enjoy your posts and appreciate your wisdom and experience.

A couple of years ago a client of mine who is a chiropractor said

that gargling with plain water for 30 seconds in the morning and 30

seconds in the evening will help with sleep apnea. The gargling

strengthens the muscles in the back of the throat, so he

said. Tilting the head way back to get the back throat muscles to do

the work is apparently important.

Since I don't have sleep apnea and don't know anyone who does, I have

no verification that this little trick works. It might be worth a

try, though, since it only takes one minute per day ...

All the Best,

Hannah

IBS-D

SCD 08/08

>The results say I have sleep apnea.

[Guest guest]

Thank you for your update and yeah!!!! Cancer free!!!!!________________________________________Loving Care, Gay CD-1994,SCD-1997

Subject: WHAT a Week! (Semi-OT)To: BTVC-SCD Date: Sunday, September 28, 2008, 5:40 PM

Well, last Sunday evening, I'm sitting here typing away, and the phone rings. It's my mom, gasping for breath, and telling me that she thinks this is the end.For those who don't know, my mom has congestive heart failure, and requires a daily diuretic. Over the last 21 days, my father discovered, she has only taken half her pills. Reason? Her knees were hurting and it was too difficult to get up to go to the bathroom. Also, they were traveling for the Hurricane Gustav evacuation, and she didn't want to have to stop and pee the way she's supposed to. (I had asked my lymphedema specialist about this issue, and she recommended a female urinal, but mom didn't want to go get one, and didn't ask either me, my sister (to whom they went), or my dad to do so.)I told mom to get the <bleep> off the phone so Dad could call 911. Which he did. I grabbed my belt pouch and car keys and a book, and drove over to their house.

911 had gotten there first -- and their house is only 3 blocks from mine. Guess I drove too slow!Oxygen did not help. She was loaded on a gurney and taken to the ER in an ambulance, with my Dad riding along. I locked up the house (not without a minor mishap: one of the firemen who were first responders had left his bag inside, and I'd locked the door -- then realized I did not have a key to their front door, and had to call Harry who brought them over) and headed for the hospital. I called our church's prayer chain and explained the circumstances, and called the pastor at home, and explained the circumstances, and by that time, I was at the hospital.I went in, and Mom had already been given injections of the diuretic she'd skipped, and was on oxygen, but she was still gasping, coughing, white as a sheet, and cold. The nurse threw Dad and me out while she inserted a catheter, and put Mom in a clean robe. That was when Dad told me

he'd discovered how much of her meds she'd skipped. I looked at him, and said, "Dad, I swear that if she dies from this, I will find a way to resurrect her so I can kill her myself!" It took him a couple minutes to parse this -- his mind being on other issues -- then he grinned wryly and admitted that he could agree with that.I intended to stay until Mom was in a room, but Dad threw me out around midnight-thirty, commenting that, "One of us has to be awake enough to stay with her tomorrow."I told the emergency room people I was leaving as I did so, and that Dad was staying with Mom. They looked concerned, and said that if Mom ended up in a semi-private room, Dad couldn't stay with her over night. I gave them my home phone and my cell phone, and said to call me, regardless of the time, and I would come back if Dad couldn't stay with her because Mom gets panicky if she's by herself, ie, without a family member with her.My blessings

on them -- they managed a private room for her.Mom came home on Wednesday -- I was pretty tired, and Dad was darn near exhausted. She's much better now. There will be a home health nurse to check on her twice a week and make sure she is taking her medications. There will also be a home health assistant in three times a week to make sure she gets a bath. The assistant can also prepare light meals.The Thursday before all this, I had my first post op examination with my oncologist, and the various labs were done. Then I got to wait for the results.On Friday, I saw the pain management doctor who sent me on 9/11 for a sleep test. Which sleep test was an NOT entertaining experience. We'll skip over the fact that I was folded in an unnatural position all night because of the wires and the extra-soft bed they had. We'll also eliminate the fact that my hips were killing me because I couldn't get into a decent position. I

darn near froze to death because the air conditioning was on so cold. Oh, and I had a major allergy attack from whatever detergent it was that they'd washed the sheets in. I came home from ostensibly sleeping all night, crawled back into my nightgown and got six hours of REAL rest. If I have to have one of these again, I have a whole list of things which I will request, including a smoke-free, allergen-free room. File this under "I needed to do a whole lot more research before I had the test," except that there was this Hurricane, name of Gustav, and his bigger brother, Ike, that got in my way of doing research.The results say I have sleep apnea. Which means, once it's cleared with my insurance, I get to go BACK to the lab and have a CPAP titration. CPAP is "constant positive air pressure" and it's the gold standard for sleep apnea treatment. It will involve sleeping, from here on out, with a rig of straps all over my head, and a mask on

my face, attached to a thing like a hosed hair dryer, blowing air in my nose.Needless to say, I'm checking into alternatives. A CPAP is relatively benign as modern medical treatments go, but for someone who is claustrophobic and can't tolerate anything on her head or face (it's taken me six years to tolerate light reading glasses), this not an entertaining prospect. Still -- if I must, I must, and I'll find a way to deal with it. After all, 8 years ago, if you'd asked me, I'd've said there was no way in Hades I was going to give up bread, pasta, rice, and potatoes! Let alone chocolate!The pain management doc thinks getting it might solve the pain in my hips and knees. Huh? I understand that chronic pain can make it hard to get to sleep, but that's not my issue. My issue is being awakened by the pain, having to wake up enough to take something for it, and then waiting for the meds to kick in so I can go back to sleep. As I told the

doc, interrupted sleep may cause chronic pain, but chronic pain can, fer darn sure, cause interrupted sleep.Oh, and for the Australians amongst us, check out this articlehttp://tinyurl.com/4ntluu about how playing a didgeradoo (sp) may help sleep apnea.The GOOD NEWS in all this is that when I got home from the appointment with the pain doc (and in shock, trying to figure out how best to deal with this latest health challenge), there was a small envelope with a card in it from my oncologist. First set of lab tests to see that the cancer has not come back are negative. Wahoo! Only four years and eight months before I can be declared cancer free....

— Marilyn New Orleans, Louisiana, USA Undiagnosed IBS since 1976, SCD since 2001 Darn Good SCD Cook No Human Children Shadow & Sunny Longhair Dachshund

[Guest guest]

Hi Marilyn,

What a week you had!

Halleluya about being Cancer free!!!

I am so sorry about your mom- I'm sure she had her reasons as you

explained. I think it's hard crawling into their head and figuring

all of this out- I wish her the best. My grandparents have pulled

crazy schtick as well.. Not going into the bomb shelter, stopping

meds during war time etc. They are Holocaust survivors they have a

completely different perception about things. I get so frustrated!!

They put my dad through hell sometimes.

Be strong- you're a trooper. Words fail me when life throws multiple

curve balls all at once to people that are important to me.

Doesn't sleep apnea also contribute to obesity? Is there any

connection in your case?

Jodi

SCD 12 months

Crohn's/Colitis

>

>

> Well, last Sunday evening, I'm sitting here

> typing away, and the phone rings. It's my mom,

> gasping for breath, and telling me that she thinks this is the end.

[Guest guest]

Jodi,

Yes, it's been a week -- I probably wouldn't be so upset if I didn't care

about my mom as much as I do. Butthe good news on my labs really helped

perk me up!

I've done some reading on the Holocaust for something I'm writing, and I

think that people who lived through that period of what, to us, is

history, do have a different perspective on many things.

Sleep apnea is related to obesity and IBS and a whole raft of other

things. So far, all I have found on the relation to obesity is the fact

that being fat can contribute to the mechanics of the situation, not

whether or not resolving the apnea will assist with losing weight.

http://www.sleepapnea.org/info/patient.html

has quite a bit of information on the subject. I recommend reading the

information for the patient and some of the personal testimonials about

what getting the sleep deficit caught up did for people. (The sound a lot

like our SCD miracles.)

—

Marilyn

New Orleans, Louisiana, USA

Undiagnosed IBS since 1976, SCD since 2001

Darn Good SCD Cook

No Human Children

Shadow & Sunny Longhair Dachshund

[Guest guest]

Marilyn,Congrats on the clean report!!! I'm so happy for you.I'm sorry about your mom. I just had a similar experience with my mom July 4th weekend. She has high blood pressure and has been borderline diabetic for years. They haven't had health insurance for a while because it was really expensive at the company my dad was working for and then he lost his job in April so they had no income and no health insurance. She hadn't been to the doctor in over a year and just stopped taking her blood pressure medicine because she couldn't afford it. I didn't know any of this, of course. July 4th we were over there to celebrate and she hadn't been feeling well since early that afternoon. That night I ended up taking her to the emergency room which is when I found out what she'd done. They got her

blood pressure down. I don't remember exactly what it was but it was high as was her blood sugar. Her blood sugar was extremely high. She's ok now. She's taking her medication and she's on a diet to help control the diabetes and HBP. She's also lost over 30 lbs. Her blood pressure and blood sugar are both in the normal range and she is seeing a doctor that is monitoring her. She scared me to death! I told her if she ever did anything like that again, the diabetes and HBP will be the least of her problems! I guess her making me worry now is payback for all those years I did it to her.....I hope your mom is doing well.Take care,Kim H. WHAT a Week! (Semi-OT)

Well, last Sunday evening, I'm sitting here typing away, and the phone

rings. It's my mom, gasping for breath, and telling me that she thinks

this is the end.

For those who don't know, my mom has congestive heart failure, and

requires a daily diuretic. Over the last 21 days, my father discovered,

she has only taken half her pills. Reason? Her knees were hurting and it

was too difficult to get up to go to the bathroom. Also, they were

traveling for the Hurricane Gustav evacuation, and she didn't want to

have to stop and pee the way she's supposed to. (I had asked my

lymphedema specialist about this issue, and she recommended a female

urinal, but mom didn't want to go get one, and didn't ask either me, my

sister (to whom they went), or my dad to do so.)

I told mom to get the <bleep> off the phone so Dad could call 911.

Which he did. I grabbed my belt pouch and car keys and a book, and drove

over to their house. 911 had gotten there first -- and their house is

only 3 blocks from mine. Guess I drove too slow!

Oxygen did not help. She was loaded on a gurney and taken to the ER in an

ambulance, with my Dad riding along. I locked up the house (not without a

minor mishap: one of the firemen who were first responders had left his

bag inside, and I'd locked the door -- then realized I did not have a key

to their front door, and had to call Harry who brought them over) and

headed for the hospital. I called our church's prayer chain and explained

the circumstances, and called the pastor at home, and explained the

circumstances, and by that time, I was at the hospital.

I went in, and Mom had already been given injections of the diuretic

she'd skipped, and was on oxygen, but she was still gasping, coughing,

white as a sheet, and cold. The nurse threw Dad and me out while she

inserted a catheter, and put Mom in a clean robe. That was when Dad

told me he'd discovered how much of her meds she'd skipped. I looked at

him, and said, "Dad, I swear that if she dies from this, I will find

a way to resurrect her so I can kill her myself!" It took him a

couple minutes to parse this -- his mind being on other issues -- then he

grinned wryly and admitted that he could agree with that.

I intended to stay until Mom was in a room, but Dad threw me out around

midnight-thirty, commenting that, "One of us has to be awake enough

to stay with her tomorrow."

I told the emergency room people I was leaving as I did so, and that Dad

was staying with Mom. They looked concerned, and said that if Mom ended

up in a semi-private room, Dad couldn't stay with her over night. I gave

them my home phone and my cell phone, and said to call me, regardless of

the time, and I would come back if Dad couldn't stay with her because Mom

gets panicky if she's by herself, ie, without a family member with

her.

My blessings on them -- they managed a private room for her.

Mom came home on Wednesday -- I was pretty tired, and Dad was darn near

exhausted. She's much better now. There will be a home health nurse to

check on her twice a week and make sure she is taking her

medications. There will also be a home health assistant in three

times a week to make sure she gets a bath. The assistant can also prepare

light meals.

The Thursday before all this, I had my first post op examination with my

oncologist, and the various labs were done. Then I got to wait for the

results.

On Friday, I saw the pain management doctor who sent me on 9/11 for a

sleep test. Which sleep test was an NOT entertaining experience.

We'll skip over the fact that I was folded in an unnatural position all

night because of the wires and the extra-soft bed they had. We'll also

eliminate the fact that my hips were killing me because I couldn't get

into a decent position. I darn near froze to death because the air

conditioning was on so cold. Oh, and I had a major allergy attack from

whatever detergent it was that they'd washed the sheets in. I came home

from ostensibly sleeping all night, crawled back into my nightgown and

got six hours of REAL rest. If I have to have one of these again, I have

a whole list of things which I will request, including a smoke-free,

allergen-free room. File this under "I needed to do a whole lot more

research before I had the test," except that there was this

Hurricane, name of Gustav, and his bigger brother, Ike, that got in my

way of doing research.

The results say I have sleep apnea.

Which means, once it's cleared with my insurance, I get to go BACK to the

lab and have a CPAP titration. CPAP is "constant positive air

pressure" and it's the gold standard for sleep apnea treatment. It

will involve sleeping, from here on out, with a rig of straps all over my

head, and a mask on my face, attached to a thing like a hosed hair dryer,

blowing air in my nose.

Needless to say, I'm checking into alternatives. A CPAP is relatively

benign as modern medical treatments go, but for someone who is

claustrophobic and can't tolerate anything on her head or face (it's

taken me six years to tolerate light reading glasses), this not an

entertaining prospect. Still -- if I must, I must, and I'll find a way to

deal with it. After all, 8 years ago, if you'd asked me, I'd've said

there was no way in Hades I was going to give up bread, pasta, rice, and

potatoes! Let alone chocolate!

The pain management doc thinks getting it might solve the pain in my hips

and knees. Huh? I understand that chronic pain can make it hard to get to

sleep, but that's not my issue. My issue is being awakened by the pain,

having to wake up enough to take something for it, and then waiting for

the meds to kick in so I can go back to sleep. As I told the doc,

interrupted sleep may cause chronic pain, but chronic pain can, fer darn

sure, cause interrupted sleep.

Oh, and for the Australians amongst us, check out this article

http://tinyurl. com/4ntluu

about how playing a didgeradoo (sp) may help sleep apnea.

The GOOD NEWS in all this is that when I got home from the appointment

with the pain doc (and in shock, trying to figure out how best to deal

with this latest health challenge), there was a small envelope with a

card in it from my oncologist. First set of lab tests to see that the

cancer has not come back are negative. Wahoo! Only four years and eight

months before I can be declared cancer free....

—

Marilyn

New Orleans, Louisiana, USA

Undiagnosed IBS since 1976, SCD since 2001

Darn Good SCD Cook

No Human Children

Shadow & Sunny Longhair Dachshund

[Guest guest]

At 05:24 PM 10/1/2008, you wrote:

She scared me to death! I told

her if she ever did anything like that again, the diabetes and HBP will

be the least of her problems! I guess her making me worry now is payback

for all those years I did it to her.....

I hope your mom is doing well.

Kim,

Mom is doing better, but we're having trouble with her refusing to do

anything. " I'm too weak, " she says. Duh. Do nothing but sit in

the chair all day, and of course you'll be weak!

I really feel for you with YOUR mom, and I'm so glad she's been able to

get things under control. I'm also glad you were there to take her to the

ER! The situation with insurance and all is just dreadful for so many

people. Harry would be eligible to retire in another two years, but will

now probably be unable to retire until after I am eligible for Medicare,

because it will be all but impossible to get insurance with me having had

a cancer diagnosis.

Mom used to claim that she hoped I would have kids just like me. Well, I

never had any children of my body, but I'm not sure Mom isn't getting her

revenge anyway!

—

Marilyn

New Orleans, Louisiana, USA

Undiagnosed IBS since 1976, SCD since 2001

Darn Good SCD Cook

No Human Children

Shadow & Sunny Longhair Dachshund

[Guest guest]

Mom is doing better, but we're having trouble with her refusing to do

anything. "I'm too weak," she says. Duh. Do nothing but sit in

the chair all day, and of course you'll be weak!Glad to hear she is better. That's a tough situation. After my grandfather had a hip replacement, he was the same way. He refused to get up and do anything. He still doesn't get around very well and it's been years since his surgery. The doctors say there is no reason why he should have as much difficulty walking as he does and if he would work at it, he could get back to almost normal but he refuses. My mom says, I don't know what to do. I can't make him and he's too big to spank.....The situation with insurance and all is just dreadful for so many

people. Harry would be eligible to retire in another two years, but will

now probably be unable to retire until after I am eligible for Medicare,

because it will be all but impossible to get insurance with me having had

a cancer diagnosis.It is horrible. was without insurance for a few years. Thankfully, the diet kept him well and everything was ok. It felt like such a gamble though, not having it. There are resources here for those with no health insurance if it had come down to it. Fortunately, we never had to go that route. I hate that my mom still doesn't have it. My dad did get a new job that has more affordable health insurance and once he gets through his probationary period she will be able to get on it. The doctors have been very good about working with her though and they do their best to give her prescriptions that are on WalMart's $4 list.

Mom used to claim that she hoped I would have kids just like me. Well, I

never had any children of my body, but I'm not sure Mom isn't getting her

revenge anyway!Yeah, mine too..... Take care,Kim