Re: Hope

[Guest guest]

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> I pray that each of you sees a miracle, however small, this week,

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> , Mom to (5, autistic) and (6, NT)

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>

Hi ,

So glad to hear about 's miracles this week (and everyone

else's). Want to hear Tom's miracles this week?

Today I was talking on the phone while Tom (6yo, Aspie) was upstairs

playing in his room alone. His younger brother Ben (4yo, NT) kept

trying to talk to me while I was trying to hold a conversation with

the person on the phone (I'm sure you can all relate :-) ). I told

Ben to go up and play with Tom. Six months ago, I would *never* have

done this. Pre-enzymes (and some other supplements), if Ben tried to

interrupt Tom's " alone " play, Tom would have probably slammed the

door in his face, and Ben would have ended up screaming and crying

(not very conducive to a phone conversation). Today, Tom let him in

his room and included Ben in his play. Soon, they were coming down

the stairs to play something together in the play room. Perhaps some

of you can relate to what a miracle this is!

Earlier this week, Tom wanted to watch a movie on Animal Planet about

a dog in the Vietnam war. Again, 6 months ago, he would have been

scared to death of something like this and not interested in it at

all. He watched the whole movie, understood it, and enjoyed it! I

kept telling him, this is just pretend, these people are just actors,

the dog will probably pretend die at the end of the movie. He

understood all that and (thank goodness) the dog didn't die!

Just wanted to share... and again, I'm so happy for .

God Bless,

Sally

[Guest guest]

, Aren't these things so wonderful to see? I agree. We will take

progress one step at a time. Enjoy the day! DonnaC

[Guest guest]

Hi June,

Just wanted you to know that I had a cataract done on my right eye a little over

a year ago. I know what you mean, I am a big baby when it comes to my eyes but

it really isn't bad at all-I was not completely knocked out but so sedated that

it really didn't bother me and I can see again!!!! Good luck- you will be fine.

June Dixon <juner24@...> wrote:

Thanks for this one Jan. Just wanted to say how much I enjoy all your different

posts, recipes, etc.Keep up the good work as it makes a difference.

Have not been on line since I have been running around making appointments to

have cataracts removed. I had no idea how much was involved. My right eye is

being done on March 3 and the left on March 22. If there is anything that freaks

me out, it is someone touching my eyes.

This week I have done some teaching with Ed Keystone who is an absolute delight

to work with. Hope everyone is having a little pain relief. It was nice to see

Elaine posting, I wondered how you were, Elaine. Has anyone heard from Elf?

Hugs

June

[Guest guest]

Hi June: Thank you for your kind words. I enjoy sending things...it's therapy

for me.

I would like to reassure you that your cataract surgeries will go fine. I had

one eye operated on last September 2 and the other one on the 9th. I felt

pretty much the same way you do, however, by the time it rolled around for the

second one, I was looking forward to it. They had my eyes sedated for about two

hours before I went into the operating room and I was awake for it with a local

anesthesia that literally kept me in lalaland but was perfectly aware what was

going on. And this is no joke....on the first one after what seemed to be just

about 2 or 3 minutes...the doctor put down his tools, walked away and removed

his gloves and left the room. I was bewildered that he would walk away in the

middle of the surgery and leave it to the operating room personnel so I remarked

on it to the nearest attendant who replied...... " you're all finished and the

doctor has gone into another operating room to do another one. " And sure enough,

they finished putting things away and immediately

rolled me back in the recovery/preparation room. After I " recovered " , the

doctor returned to instruct me on the care and feeding of my new eye. It was

repeated the following week. I had never been without glasses since the 8th

grade on (should've had them before but my mother didn't believe me when I said

I couldn't see) My vision was 20/600 at the time of the surgeries and now I am

blessed with 20/25 as I just came from a follow up today and do not have to seen

again for 1 - 2 years. I am able to go without glasses for the first time in 50

years but still have to wear them when reading or driving. A side note on the

cataracts. I am only 63 years old and was told in June of 2002 (61) I had

cataracts but not to worry as they would take at least 10 years to be considered

a problem. Less than 6 months later, my eyes were very bad and I was having

problems driving night or day. In June, I made an appointment to see the eye

Dr. (I wasn't due to return for another year) and she

said when I told her what I was there for, she didn't seem concerned, however,

as soon as she looked at my eyes, she said my right eye was covered with the

cataract and the left was almost. It took about 6 weeks for the ins company to

approve it and I really lucked out. I have Tri-Care Prime through the military

and usually the top doctors (in our region) are not providers. There were only

three doctors approved in this area including the Shandley Eye Center at

UCSD...a renown Eye Center. I had Dr Brown who is one of the top men in the

field plus being known all over the world and is one of the two Dr's who run

this eye center. And after having him as a doctor, I know why he is

renown.....would you believe I was his only patient? That is the way he made me

feel and was never busy enough to not answer any questions I had. He also told

me that the FMS I have is the reason the cataracts grew so fast and that FMS has

the tendency to make the body older than the chronological age.

If you have any questions that you think I might help you on, don't hesitate

to ask me.

I took part in a study today with a doctorate student doing his disconcertion

for his doctorate. It is research into FMS patients and mood and will be a part

of a larger research project when it is completed. He plans to practice after

he receives his PhD as a specialist with FMS patients and in such fields as

depression, etc. He told me there are very few such psychologists that

specialize in FMS patients exclusively and the ones who include it in their

practice seem to focus on what other patients feel and do rather than the FMS

patients. He is having a hard time locating FMS patients in SO CA as when I

made the remark that this area doesn't have much put together to help FMS

patients, he agreed. He is sending me a list of people that he has found

through his study of FMS yoga instructors, pain control specialists for FMS,

people specializing in FMS Massages and support groups including water therapy

groups among others. If anyone in the SO CA area would like to take part in

the study...it is only a one time 2 hour meeting with him to answer questions

relating to mood and FMS (you cannot have RA because it is a focused research

study but there are some other things such as IBS and other related diseases you

may have). If you would like to participate, please feel free to email me.

I continue to keep everyone in my prayers and positive thoughts. May you always

look forward to a pain free tomorrow.

Love...Jan =^..^=

June Dixon <juner24@...> wrote:

Thanks for this one Jan. Just wanted to say how much I enjoy all your different

posts, recipes, etc.Keep up the good work as it makes a difference.

Have not been on line since I have been running around making appointments to

have cataracts removed. I had no idea how much was involved. My right eye is

being done on March 3 and the left on March 22. If there is anything that freaks

me out, it is someone touching my eyes.

This week I have done some teaching with Ed Keystone who is an absolute delight

to work with. Hope everyone is having a little pain relief. It was nice to see

Elaine posting, I wondered how you were, Elaine. Has anyone heard from Elf?

Hugs

June

[Guest guest]

Great summary. Well said. I saved it.

[Guest guest]

I am glad it is helping , it has really helped me too.

Talking to other people with CMT and other parents with CMT kids makes me feel a

little more 'normal'.

The hard days are hard no doubt about that. I can't help but think our

children will have some really good days ahead They will know what it is like

to have a disability and they will have a treatment. What a fun time that will

be for them.

[Guest guest]

At 02:55 PM 10/6/06 +0200, you wrote:

>I am Jalloh I am a patient of CML and i am using AMN 107.

>

>I am using AMN 107 since 3 months and the results are very good. the

>treatement is responding in a good way and i hope that it wil continue in

>that way.Up to now i have no probleme with the side effects of the Amn 107

>and i feel better and better.

>Has anyone some experiences with AMN 107? Can we talk about it? Please let

>me now.

>I wish you all good luck.

Hi Jalloh,

There is an AMN group on Jerry's website, it is not very active, not that

many people involved yet, but you might try it.

go to www.newcmldrug.com

click on (left side) AMN-107 TALK

go luck to you,

C.

[Guest guest]

,

If you don't mind me asking, how did you meet him and how & WHEN did you spring

CMT on him?

I'm curious, because it is hard to (physically) get out & about to meet someone,

and then if I do I always have that dilema of weather to tell him about CMT

right upfront, or let him get to know ME first.

Donna in Indy.

[Guest guest]

Hello dear Randy. Thank you so much for sharing your life story. I see the spiritual person you are and rejoice in your past. It helped shape you into who you are now. You are most definitely a treasure. I believe that we all choose our paths and major life experiences before we came into this life for the purpose of building up our "tool boxes". Tests, and character shapers if you will. That in return enables us to become way showers for others, using the gifts we have to express our wisdom. Whether it's speaking, writing, painting, or just being a wonderful person to talk to. Your poem "Hope" is a very intimate expression of a person who refuses to get knocked down. Someone who plays by their own rules in order to survive, and can still find the magic in a life of compassion. "A candle burning in the rain."Here's my most recent blog I posted on my myspace page. I think it fits perfectly:You have stopped me before. Now

I look into your dangerous eyes and say: "I welcome you into my arms.

My experience full of pain and sadness. I comfort your struggle. I

lighten your dark. You are my suffering child and I Love You. Heal and

reside as my friend and teacher. Hate is released. Confusion is now

clarity. Sadness is now compassion. Pain is now love." My friend. My

teacher. You are one with me. We are kin of spirit creating a way of connection. Thank you Fate.Thank you Life.The divine tests of Compassion. Much MUCH love and compassion to you dear Randy.Stefanie>> > > > > Hope> > > > Since birth I have been a shadow,> and while walking the path of life,> I have always seen hope;> > A dying tree with one bright green> defiant leaf.> > The rose reaching for the sun> on the cloudiest of days.> > A candle burning in the rain.> > Never knowing the source;> The essence which kept me dark> yet let me see> hope.> > Hello!> I can see you.> I can hear you.> I can carress your hand> or your words.> I have become light,> from the light which is you.> > The word "hope" and you> share the name.> The strength.> The radience and magic.> A oneness I have found within you,> and I now am me.> > > > > -Randy>

[Guest guest]

Ann,

I hope you are right and medical science can help heal the nerves in our feet

and ankles. I guess we have to keep as informed as possible.

Dawn