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Hey Donna -

It's great to hear from you and if your daughter is going to AU? That's

REALLY GREAT! I live two minutes (at the most) from AU and would love to

meet you and your family. Please, please know that you have an open

invitation to come and stay when you visit. Also, if your daughter or her

friends as she gets to know other girls needs extra cash? I'd be beyond

thrilled to have her babysit sometime - I'm looking for a college girl to

help me on a regular basis every other Saturday starting in the fall. I pay

well - it's worth the best for my kids and I especially value sitters who can

feel comfortable and enjoy my Dunc -

Also, please know that if she needs anything? I have quite a few wonderful

" nieces " in town - one at town Law that was a babysitter for me in

Chapel Hill - she has been adopted by my whole extended family up here ( my

mom is here now and lives with my sister and her husband and three teenage

kids). , my adopted niece so to speak - she worked on the US Senate

Judiciary Committee for my brother-in-law and was so inspired she went on to

law school! She helps me with the kids from time to time and they all adore

each other.

Our help, support and another homefront is here for her and I'm a phone call

away if she needs anything or a homecooked meal!

In Philly, another sweetheart of a young woman - who lived with me for a year

helping me with the kids and she now lives in - area of DC, her

dad is the Chief of Anesthesia at CHOP. Bill Greeley - he's wonderful and

headed up Duke's Pediatric Critical Care Unit for years. I was up at CHOP a

few months ago when I was working as a consultant for a nonprofit about

family-centered care. They had just been awarded the Child Magazine top

hospital in the nation....

Anyway - I really love to see ya'll sometime and hear about Maddie's

experience with this therapist. Maybe she can recommend someone in this area?

Thanks again!

Ann

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  • 1 year later...

Hello Ann

Sorry to tell you that most of us are going to say that there's not merely a 'chance' that it will get worse and cause complications but that it definitely will. However slowly it seems to be moving at the moment, it's never static and it isn't a self-limiting disease. Left indefinitely, it would start to destroy all the other delicate structures in and around your ear. Besides the hearing loss that usually means ear discharge (when it gets infected), severe headaches, ear and mastoid pain, facial paralysis and extreme loss of balance etc. You also become a much greater risk of deadly serious brain complications. I wonder if you if you've been told that not having surgery is even an option. It's only ever possible to try to control a few kinds of c-toma in the very early stages without surgery. Even then, surgery comes round eventually. However unpleasant the operation may seem, it's always useful to remember that it's to prevent something much worse occuring. So welcome to the group - you'll find some good cyber friends here with whom to share your experiences and ask questions etc.

If you don't mind I'm curious to know one thing. Almost all c-tomas start in the middle ear but if yours was in the ear canal and went in from outside did the doctor actually refer to it either as a 'Canal' or an 'External' cholesteatoma.

Good Luck

Phil

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  • 1 year later...

----- Original Message -----

From: " nomorechipsforme " <nomorechips@...>

>

> I hope your child is better soon. What disease is it? I would love to

lose the 50

> pouonds because I got stuck in a booth at a restraunt once. And I broke a

chair at a

> friends house. That was so awful and she felt as awful as me.

Lynn has a cough and sore throat. The doc swabbed it and it's not strep.

Yea! She's had strep several times this winter. My sister won tickets to

Stars On Ice for Saturday night so she really wants us to come up to Dallas.

Hopefully Lynn will feel better soon. I can't keep her home from school

unless she is really sick because her teacher is such a hard ass. Lynn has

trouble staying caught up when she is there. :( I'll be glad when second

grade is over.

Let's see.... 50 pounds would put me about 220. That would be nice. I

haven't seen 220 in a long time.

Ann

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  • 7 months later...

By " Coles notes " I mean the short version of my A story.

:) Kat

> Dear Kat,

>

> Please can you tell me what " coles notes version " means?

>

> Dear ,

>

> Lovely to hear from you. I live in Huddersfield, West Yorkshire.

> Nearest city is Leeds (although if you are a footie fan you will

> have heard of Huddersfield Town).

> Can you tell me something about yourself and where you are in your

> journey through this daft disorder we all have?

> I am on the waiting list for keyhole surgery and am pleased to

know

> that at last I might see an improvement in my eating abilities. I

> don't look ill. In fact I am a normal weight and look healthy. I

> know that in this respect I am very fortunate.

> But i would LOVE to look forward to going on holiday instead of

> dreading it because of the meal arrangements. (bet that statement

> sounds familiar).

> Looking forward to getting to know you.

> Love from ANN

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  • 6 months later...
Guest guest

Hi AnnI would do anything to have the A rather than her - you feel so helpless.As she has a baby it might be easier to meet up locally - I am on half term end of May beginning of June - perhaps we could fit something in then?I spoke to Hannah yesterday - I will try and get her to post sometime this week - she is up for meeting you - I think the opportunity to speak to someone who knows exactly what she feels. She very rarely tells anyone about her condition as people have not heard of it - it takes a lot of explaining - I think that is the hard part - plus she feels she is attention seeking by trying to explain.I have to say she is a lovely girl, even though she is my own, and her illness has brought us very close...But although she was 19 when real symptoms started she projectile vomited from birth and has a child and teenager would only eat things in tiny amounts - I wonder if those are significant in A?Thanks again Ann

<lilac_blossom_lady@...> wrote: Dear , I actually atempted to reply to your message earlier today, but I think it disappeared into cyberspace. So much for my computer skills! It would be nice to hear from your daughter on the Board, but I understand that it's a matter of confidence and she may prefer to stay in the background. However, I want to say that it would be an honour for me to meet up with you both and have a chat, in the hope that I could help you in some way. If you feel that borough is too far to venture, maybe we could have our own private meet-up somewhere more local. Ask your daughter what she thinks. By the

way I have an adult daughter too. I am glad that it is I who has (me who have) I who have (can't believe I did well in English Grammar at school LOL), I am glad that I am the one who has Achalasia and not my child. I think it is harder for you than it is for me. With love from Ann in Yorkshire xxx Dear ,> There is no doubt whatsoever that she will benefit from being part of this Group. I believe that the worst part of all is feeling like you are the only one in the World who is coping with it, which, of course, is not true, but that is how it feels when you don't know anyone else. And to actually meet up with another person is surreal. The day I met I regard as one of the most important days of my life. And if you think that is far-fetched, show her this post. She will understand.> I live in Huddersfield, West Yorkshire. She could come to our next meet-up. You could come too. It would be extremely informative and wonderful for her and for all of us. So the answer is yes, tell her to dive straight in. She will be welcomed with open arms.> Love from Ann xxxx> > >

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Dear ,

Your plan sounds fine to me. We can sort out some proper arrangements nearer to the time. Both Hannah and Meghan sound to be just lovely.

Lots of love to you all from Ann xxxx Dear ,> > There is no doubt whatsoever that she will benefit from being part of this Group. I believe that the worst part of all is feeling like you are the only one in the World who is coping with it, which, of course, is not true, but that is how it feels when you don't know anyone else. And to actually meet up with another person is surreal. The day I met I regard as one of the most important days of my life. And if you think that is far-fetched, show her this post. She will understand.> > I live in Huddersfield, West Yorkshire. She could come to our next meet-up. You could come too. It would be extremely informative and wonderful for her and for all of us. So the answer is yes, tell her to dive straight in. She will be welcomed with open arms.> > Love from Ann xxxx> > > > > >

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  • 2 weeks later...
Guest guest

-

Hello Ann, may I also suggest that you don't have any plant fertiliser,

in the plant sprayer too. I think that current researches have found

that the fertiliser doesn't do us any good he he he.

About the weather girl thing, I don't know about the cute thing though.

I just saw a's photo. Mine are similar except that the four line up

accross the stomach and one at the breast bone.

The fact that a's are separated more makes them less

distinguishable. Thats great a. Your lookin good girl.

Also sorry I missed it Happy Mothers Day. We have it in May so we can

do the rounds again then.

Regards

-- In achalasia , " Ann " <lilac_blossom_lady@...> wrote:

>

>

> Dear ,

>

> Can I just add to the very good point you made about wetting the mouth

> to get some water? A good idea is to use a small plant sprayer, so

that

> the water comes out in a fine spray. Apparently water can be absorbed

> to a certain extent through the membranes of the mouth and throat.

That

> would be better than nothing.

>

> And incidentally, I think you make a very cute weather girl. I think

> you should audition for your local TV station. [;;)]

>

> Love from Ann, so far away from you. xxxxx

>

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  • 4 months later...
Guest guest

Ann,

That dinner sounded amazing! I'm glad you had such a wonderful

time.

I hear the Greek Islands are amazing. As a hobby I do photography,

and scenery is mostly my primary focus. When I mentioned " Plus I

don't know the first thing to do once I'm there " I really ment that

I'm overwhelmed by the amount of places to see to see in Europe. I

don't want to miss anything! I'm planning a trip to Mexico in April

2007, so maybe in late 07 to early 08 I will plan a trip to Europe.

When is the best season to go?

My shoes will be ready for the 17th. I will be practicing in the

meantime. Can't wait!

in Michigan

>

> You said, :

>

> I am looking forward to Aug 17, where shall we meet? Perphaps in

> England, I think there may be some beautiful gardens there. I

don't

> know of any nice gardens here in Michigan. We do have some scenic

> Great Lake views though! Speaking of which, I've never been to

> Europe. I've always wanted to go there, espically England, France,

> Belguim (I have distant family there) and Greece. Someday when I

> make the trip, we will have to meet. Plus I don't know the first

> thing to do once I'm there :).

> You are right about the gardens in England. Our climate is

perfect for flowers. Even our own garden is spectacular at this time

of the year.

> I have been to Belgium, on a quick trip to Bruges and to ,

which is a Greek Island. Stuart and I are planning to go to two

other of the Islands in Autumn, Santorini and Mikonos. They are

fabulous for a holiday. Stuart revels in the history and I love the

walking and scenery. We also visit Malta regularly. Amazingly, I

have never been to France yet, but that is going to be remedied in a

few weeks time with a short visit to Paris. That will be so special.

> What do you mean when you say " I don't know the first thing to

do once I'm there " ? I am intrigued by that comment.

>

> Meanwhile I hope you are polishing up your dancing shoes for our

cyberdance on the 17th. Everyone can join in. (LOL). perhaps you

and I should have dance cards as they did in England a couple of

centuries ago when the men had to write their names in them to

reserve a dance with a lady. Any offers out there? I promise not

to tread on your feet.

>

> Love from your fellow feel-good friend, Ann XXXX

>

>

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

> All new " The new Interface is stunning in its

simplicity and ease of use. " - PC Magazine

>

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  • 2 years later...
Guest guest

I read your note about he the total knee and the quads and hamstring area.

I have that problem. It is why my dr and Pt will not let me go back to work

yet. I go 3 times a week and he works that area at the beging of the PT

appointment and then he rubs that area to. He spends at least a good 12 to 15

min. I notice a big difference after that. I have learned you just take each

day wiht the new knee.

katie

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