amy

[Guest guest]

Thanks for the encouragement. There are times when it is so hard to get out of bed and I need the extra push to get going.

On Monday I am going to start pool therapy. That is the only alternative I have left now. I saw a new dr. yesterday and he says that he has had good results with this. I hope it works.

thanks,

the WV hillbilly

[Guest guest]

,

Hope the pool therapy helps. Sorry to hear you are feeling so poorly. I

have to go see the Hepatologist on Wed. I always get nervous before this

trip. My joints ache so much these days, I don't know what's going on. Will

talk with him about Lupus and arthritis testing. So I do understand, on a

small scale what you are going through. Hang in there. I bet it is

beautiful up there. I know that you and Cheryl and Randy live a little

closer to God because it is such a lovely State.

Hang in there.

Thinking of you in VA.

[Guest guest]

With all due respect..(I'm not trying to be a smart ass) but fluid in

the lungs is NOT ascites. Ascites is the build up of fluid in the body

cavity of the abdomen. It is fluid that has been leaked into the spaces

outside of your organs in your belly region

It affects the lungs by applying pressure from the OUTSIDE of the lungs

making it difficult to breathe. I know a bunch about this... I suffered

with it for over a year before my transplant.... it even ruptured my

belly button. It's pressure is also hard on your heart. I'm sending a

couple of sites....one of them has a picture that you can enlarge. ( I

sent another photo earlier...i'll try to find it.

love jerry

[Guest guest]

Dear Joan,

Thanks for asking. Boy I read my own e-mail from Sunday and could hardly decipher it myself. I guess that taking those night meds in the really whacked me out. I slept most of the day but don't tell my dr. she doesn't like the solution of sleeping it off because one might not wake up! It felt like major encepalopathy but since I knew I had taken my Ambien in the morning I didn't worry too much. I even put my meds in a box with days and three slots for each day and I still blew it. Now I think I have to go to first grade methods - color code!

I never could decide who to pass this illness on to so I decided that I couldn't quit just yet - just hanging in there. The fatigue really pulls on me...

Thanks for all you do!

Amy

[Guest guest]

Dear Ruth,

Yes, I'm fine. I've mixed things up before but not this much. I get tired and just don't do details well - as we can all relate to.

Yes, I'm waiting for a transplant but low on the MELD score because those numbers are fairly stable - it's the encepapathy, acites, varicies and the acites fluid in the lining of the lung that pushed me over. I have great doctors who are very proactive so I'm sure that is why I'm doing as well as I am. The waiting is supposed to be good but every so often I wish something could happen instead of this limbo I'm in but generally I'm good to go!

Thanks!

Amy

[Guest guest]

Amy,

So glad they found out about the ulcer and that things are getting better for you! It is amazing how often we are right about our bodies! It's kind of scary, too, though. I try to trust my doctors, but there have been many times I've been told not to worry about something only to find out it was something to worry about after all!

W

[Guest guest]

Dear Amy,

Wonderful news that the new meds are helping you so much. It is always a triumph if you can lessen your pain and anxiety levels.

Keep after the doctors.... you know your body better than them.. and dont let them tell you it is all in your head... you know better.

Great news!!

Cheryl & Randy

[Guest guest]

Amy: Where ya been? I haven't heard from you in forever. How are things

going?

Do you need for us to pick up that computer? Phyllis

[Guest guest]

I'm here! Just very busy!!! Yes, we'd love to see you, and yes, you can

pick up the computer. Call me!

Amy

Re: Amy

Amy: Where ya been? I haven't heard from you in forever. How are

things

going?

Do you need for us to pick up that computer? Phyllis

[Guest guest]

" What do you make of this.......

Okay, maybe I'm dreaming this, but seems to have caught every bug

under the sun since we started on all these supplements. He's had 2 ear

infections (according to former foster mom, he never had any), strep throat,

and several colds. Anyone else experience this? "

Thanks,

Amy

Amy,

The same thing has happened to us, except that my son has been on diet and

supplements for nearly 3 years now, but last Fall I decided that " I " needed

to start taking better care of MYSELF too. So, cleaned up all our diets,

eating much healthier foods, taking nutritional supplements (vitamin/min.),

and I have been soooo sick this year. I mean, I got sick in October and have

been sick every 2 weeks since. Same thing with my son. I am beginning to

think I have some weird cancer or house infected with weird mold or

something. We have never been a " sickly " family. Maybe 2 colds per year. But

this year, never-ending bronchitis, runny or clogged noses, etc.

The healthier we try to be, the sicker we get.

Let me know if you have any solutions. I am thinking go back to junk food

and no vitamins (just kidding).

[Guest guest]

on 24/4/03 12:12 PM, randallwade at RANDALLWADE@... wrote:

> " What do you make of this.......

>

> Okay, maybe I'm dreaming this, but seems to have caught every bug

> under the sun since we started on all these supplements. He's had 2 ear

> infections (according to former foster mom, he never had any), strep throat,

> and several colds. Anyone else experience this? "

>

> Thanks,

> Amy

>

> Amy,

> The same thing has happened to us, except that my son has been on diet and

> supplements for nearly 3 years now, but last Fall I decided that " I " needed

> to start taking better care of MYSELF too. So, cleaned up all our diets,

> eating much healthier foods, taking nutritional supplements (vitamin/min.),

> and I have been soooo sick this year. I mean, I got sick in October and have

> been sick every 2 weeks since. Same thing with my son. I am beginning to

> think I have some weird cancer or house infected with weird mold or

> something. We have never been a " sickly " family. Maybe 2 colds per year. But

> this year, never-ending bronchitis, runny or clogged noses, etc.

> The healthier we try to be, the sicker we get.

> Let me know if you have any solutions. I am thinking go back to junk food

> and no vitamins (just kidding).

>

>

This could be a die off period of bugs and virus's because your body is

getting better imput and the supplements and good foods containing vitamins

etc might be causing a die off.

It might all settle but if not then I would go get some tests done.

marion

[Guest guest]

Amy, That is great news about your husband. Maybe this will help keep you

from working part time. Being home with your family has probably helped

build up your immune system to keep infections away. Are you nearby the

hospital you need to go to? I'm assuming you are on the transplant list

too. I agree with your husband on the work issue. I would think you

would get over tired even working just part time. There is plenty of time

to work later. I think it's wonderful that you and your husband do rug

hooking together. Do you do your own designs? A woman who lived here sold

her house and moved out of state and gave me a hugh amount of stuff that

involves rug hooking. Also many books. I haven't had the time yet to try

to figure out what is what. I'm sure it would be better if I took a class

to learn. I have always wanted to learn. There are many things I wish I

had the time to learn. I just don't have the time, energy, or the money.

I have never seen classes listed for rug hooking. Have you ever braided

rugs? What do you knit? I did knitting when I was real sick. I started

to try to learn how to do socks but haven't gotten to far with it.

Working with four needles is not easy. I find hobbies like these are good

for the soul. I find it very relaxing to make things. I have always

wanted to learn things about pottery, ceramics, jewerly making,weaving,

etc, etc...I'm hoping for a better energy level so I can get back to my

art stuff and projects..Do you take your classes through a high school or

college? The college near here has some classes that I would like to try

but it is to expensive for me right now. Anyway take care! Stay home with

your family. Everything else has a way of working its self out.

-NH

[Guest guest]

In a message dated 7/23/2003 4:09:35 PM Pacific Daylight Time,

amyms@... writes:

> To those of you with older

> children (mine are two and two months), how prevalent would you say

> the condition your child/children have are in your daily lives?

> Right now, it seems the therapy facing us the next couple years is

> time consuming, and I just don't know what the future holds.

>

Hi Amy,

Mine are almost exactly 2 years apart (4.5 and 2.5) within 2 days of each

other! How's that for timing? I started noticing something was up at 18 mos,

but at that point I was already pregnant and about to have Sam. My older son's

immaturity has played a major part in our daily lives and at times it feels

more like I have twins:) Sam is not at all like Joe, but he is a VERY INTENSE 2

yr old. I'm going to read Raising Your Spirited Child from cover to cover (I

skimmed it with Joe). Try to focus on the immediate future as best you can,

especially since you just have a 2 month old. I remember the first year with

two was one of the hardest! When I start to think about Joe going to school

etc., and all that will follow, its just too overwhelming and frankly I have no

idea how it will go! Sometimes thats a good thing.

Johanna

mom of 3, wife of a self dx aspie

[Guest guest]

Amy,

My two are 10 DS (As) and 8 y/o DD (NT). If anything my DD has helped

with DS. She can remind him ( take your bookbag), help with speech, being a

friend and what is expected or not.

AND...he has helped her with homework and other things.

At 8 she is now beginning to become fustrated with him and I am now explaining

to her about AS. Otherwise she opinion is " that's just my brother " .

As for me as a parent and the extra running with him ( therapist) I am used to

it and so is she. DS started speech therapy at age 4 so she was 2. The

therapist had tons of toys for her to play with. Now, she always has a book,

books or music on tape ect. If were not needed sometimes I give her a treat

while he is at the appointment we'll run out for ice cream.

in NJ

[Guest guest]

Dear Amy:)

Thanks for the words of encouragement. He really was a 'twit' and a jerk. I

have a letter written to him and will

send a copy to the College of Physicians and Surgeons telling him just what I

think of his treatment. I've kept a list

of all his stupid comments and his bad attitude. Actually, since the new hep

cut my pred in half, down to 25 and the

Imuran down to 200 from 250 I am feeling so much more normal, you know what I

mean, normal compared to

weird and so tired and shaky etc. I am actually sleeping through the night some

nights and have been able to go back

to doing normal things that take concentrtion. It is amazing.

Keep well,

Dianne

[Guest guest]

Amy,

I know your post was to Patty but I totally agree. 2 weeks ago things didn't look too horribly bad for me and one little virus drives everything ski high. It does make daily living a big roller coaster. I've just decided last night, I'm not getting to hung up on numbers. What is, is. There is nothing more I can do to change it other than take my meds and follow doctors orders.

I too, send Patty gentle hugs, and know that a liver will come soon. Fortunately, you and I are just at the start of this big waiting game. Who knows, maybe soon there will be some break through that will improve the outcome for both of us. We have to have hope.

Hang in there.

[Guest guest]

Amy,

It is not crazy to miss your first graders. You sound like you are an awesome teacher and it is a shame that you are not able to be in the classroom at this time. I hope that you will be able to return to teaching at some point in the future. I don't know if you are up to it, but have you thought about maybe volunteering for just an hour or so a week? My sis spent two hours a week last year working with two little girls in her son's class that were having trouble learning to read. they were in the first grade and the rest of the class was rapidly leaving them further and further behind. My sister doesn't have a teaching degree but she taught preschool and is very good with children. She was apprehensive about working with the little girls at first since she didn't have any formal training in teaching children to read. Her son's teacher reassured her that mostly the girls just needed extra time reading aloud and needed to be in an environment where they wouldn't be embarrassed when they struggled with words. In a matter of just a couple of weeks, these little girls flourished. By the end of the year, they had caught up with the rest of the class and the teacher felt sure they would do fine in second grade. One of my friends, who does have a teaching degree, worked with a couple of students 4 hours a week last year because she hadn't gotten a teaching job. These children also flourished with the individual attention. They were in the 3rd grade and were not even reading on a 1st grade level. These were also girls and when my friend first started working with them, they told her that they were just stupid and that they would never be able to read. She assured them that they were far from stupid and that she knew they could and would learn to read. The first time one of the girls read a story without stumbling over any words, she beamed as though she had won the lottery. My friend said that smile was worth more than a year's salary!

I don't know if you are up to even an hour or so a week, but if you are, I have a feeling there are many teachers that would love to have you help a struggling student. Only you know if you are up to that or not. It might not be good for you to be exposed to all those 1st grade germs at this point. If you're not up to it, just try to hang in there until you can get your new liver and recover enough to get back in the classroom.

You are in my thoughts and prayers.

W

[Guest guest]

I will let you know as things progress with the transplant listing. Now my doctor said he thought we could wait awhile. I'm so confused I don't know what to do. I'm still collecting records and talking with Cleveland Clinic. I definitely want a second opinion as my Hepatologist seems so uncertain which way to go. We know I will have a low MELD score in relationship to others here waiting but now I'm really confused. (He just mentioned this on Friday when he called as I was driving down the road. Not a good place to get your thoughts together.) I will talk more with him next week when he calls as I'm having weekly labs now.

.

[Guest guest]

THANK YOU AMY AND I WILL PRAY FOR YOUR COUSIN. YOU ARE RIGHT THIS DISEASE IS ALOT LIKE AIH WITH ALL ITS TWISTS AND TURNS.

GOOD LUCK TO BOTH OF YOU.

the WV hillbilly

[Guest guest]

Amy,

Sorry to hear about the ascites. I'm sure the procedure is not much fun. You are braver than I am. I wouldn't let them do it to me without sedation. I have been fortunate in the fact that the multiple diuretics I have taken have so far been able to deal with the fluid. I know that I am bordering on having to have my abdomen taped but so far I have been lucky. You hang in there and keep on fighting. I plan to.

I'll "run for higher ground" in the middle of the field at my sisters if it gets to bad here. I just don't like all the tall trees that are very close to my house. I can't stop the rain or the wind but I can run. That's my plan. I'm not one of those brave souls that will stay and stick it out. Don't like excitement that much.

Stay well and hope you feel better soon.

[Guest guest]

My Doc says just about the same thing. Oh you don't look pregnant. Spoken from a 120 LB person who looks definitely like a distance runner. Probably 0% body fat.

We are just like Rodney Dangerfield aren't we. "We don't get no respect."

I'll invite you to my shower if you'll invite me to yours. All we can do is laugh, right?

Have a good night.

[Guest guest]

My platelet count is in the same range. I too can only take up to 2 Tylenol (regular strength a day). Hepatologist wound lay an egg if he thought I took anything with aspirin in it.

As I sit here with ice on my knee. I tripped over a cart at work and I have a bruise that is swollen and covers the whole back of my knee and leg. The Orthopedic Surgeon I work for just about flipped when he saw it. He said. "Go home put that thing up and ice it. What was your last Protime?" I told him 18 and I thought he was going to stroke. I guess I'll call the Hepatologist tomorrow and see what he thinks I should do. Boy does it hurt.

It really scares me that such a small bump could cause such massive bruising. Now I know why they tell me to be careful driving. If I were in an accident, I don't even want to think what could happen. I guess I'll slow down and not drive like Petty anymore.

No vices at all. Can't drink, can't eat, cant take drugs, can't drive recklessly. Boy I've turned in to a very boring person. I guess all of this is a small price to pay for still breathing. I'm elevating and icing tonight. Doesn't that sound exciting?

Talk to you later.

Chilling in VA

[Guest guest]

What a thoughtful gift. Sounds like you have done something very right in your life. Be proud of her. You helped develop that sensitive caring young adult. Job well done.

[Guest guest]

Just wanted to say Amy, you are so good with words.. And you are a special person, so caring. Hope you are doing good, these days, yourself.

Love Gaynel & Cliff

[Guest guest]

Hi Amy, Thanks for response reg. holistic treatments. I do not even know if there is a good Nauturopathic Dr. in my town, but YES!! I will be very carefull...Thanks again and a Happy New Year to you!

Shirlee (wa state)Dear Shirley, I know that once you get on the transplant list, which would be nice to avoid, they do not allow you to take anything that they don't approve of or you're out of the program, just like alcohol and illegal drugs (even the medicinal one you can smoke ) I know that Joanne went for massages and Reiki (?) treatments which she said really helped her and those are certainly holistic. Explore, question and weigh your options carefully, it's you who is going through this.Take care!Amy