From Liz W/AZ:

CAN I REALLY EXPRESS INTO WORDS WHAT FUCHS' SUPPORT HAS MEANT TO ME? I DON'T THINK SO... I DON'T BELIEVE IT CAN ALL BE PUT INTO WORDS. BUT...

WHEN I FOUND FUCHS' SUPPORT, I WAS ELATED!!! NEVER HAD I BEEN SO LONELY, EVENTHOUGH I WAS SURROUNDED BY PEOPLE. NO ONE UNDERSTOOD WHAT I WAS/AM GOING THROUGH. NO ONE I TOLD EVER HEARD OF FUCHS' DYSTROPHY. MY GOODNESS, NEITHER HAD I. TRYING TO EXPLAIN IT WAS A "NO GO". I DIDN'T REALLY KNOW WHAT IT WAS ALL ABOUT MYSELF. BEING TOLD YOU CAN GO BLIND AND TO JUST USE MURO DROPS AND BE FOLLOWED BY A DOC(NEVER TOLD WHAT KIND OF DOC) WAS ALL I KNEW. 

BUT ONE DAY...

ONE DAY I FOUND FUCHS SUPPORT!!! WHAT A GLORIOUS DAY FOR ME! I JOINED IN 2004. AND IT HAS BEEN A SAVIOR. I LEARNED THAT I HAD A DISEASE THAT WAS ACTUALLY INHERITED. I NEVER KNEW THAT IN ALL THE 9 YEARS I'D KNOWN I HAD THE DISEASE. WHAT A DOOR OPENING FOR THE KNOWLEDGE THAT I DIDN'T HAVE! WHAT A BLESSING TO ACTUALLY UNDERSTAND WHAT WAS GOING ON WITH MY VISION. WHAT A BLESSING TO LEARN THAT THERE WAS HOPE FOR THESE EYES OF MINE!  WHAT A CHANGE FROM DISPAIR OF NOT KNOWING HOW TO EXPLAIN THIS DISEASE TO THE KNOWLEDGE I NOW POSSESS. THE SUPPORT I NOW HAVE IS IMMEASURABLE.  TO NOT BE ALONE AND TO BE ABLE TO SHARE MY GRIEFS AND DISAPPOINTMENTS, WITHOUT JUDGEMENT, PERTAINING TO THIS DISEASE, HOW CAN I EXPRESS THAT INTO THE WORDS OF MY HEART THAT I REALLY FEEL? I CAN'T.

I THANK GOD THAT HE PUT INTO THE HEARTS OF JMAN AND KAREN P/WI THE BURDEN OF A SUPPORT GROUP FOR THOSE WHO SHARE THIS DISEASE. THE LONELINESS HAS BEEN REMOVED. I HAVE THE SUPPORT OF THOSE WHO UNDERSTAND.

WHAT DOES THIS GROUP MEAN TO ME? I CAN'T EXPRESS IT.

THANKS TO MY NEW FAMILY; AND I LOVE YOU ALL!!!!!!!

 Liz W/AZ

_____________________________________________________________________

From Caro in Canada:

What Fuchssupport means to me and the changes it has made in my life.

At first when I learned that I had this disease I was completely terrified and

in tears.

The group helped me to understand that it’s something curable, unlke to

some other eyes diseases that aren’t.

Talked to some people who ohave had transplants to one or both eyes helps

me to realize that it’s something that I could also going throught.

I know now how to cope with the desease and I know now that I willl be able to

face a T when the time comes.

Knowledge is the remedy against fear.

Thanks Karen and Jman who have

started this group

From Karen L/CA:

If I had not joined the group when I did, i would have continued to put
off the transplant,  Joining in April of 2004, transplant 7/15/04

another tribute, what this group has meant to me.:

  it is always here and is very supportive of me, and when I seemed to be
lost for a while,

 when I had my terrible fall, quite a few of the members hunted me down.
that meant so very much as i lay in the hospital with a concussion for
three weeks.  You really cared, that is REAL SUPPORT

Karen L/CA

____________________________________________________________________-

From Georgeann Ky/FL:

Karen, I think it is wonderful what you, Jay and the leaders have done with this group in one year's time.  I really enjoy reading all the post even though I don't post often.  I really wish I could have found a group like this before I had my first T, it would have been such a great help.  You feel so alone and think you are the only person with this disease, but with this group everyone can relate to the same problems.

As a lot of us know, it is nothing to be afraid of.  All of this group seems like family as you seem to get to know them so well.  Keep up the good work, you all are doing great.

From Diane M/WA:

The group to me is like a family.  We can kid around with each

other and have a good laugh.  But, most importantly, we can ask for prayer and support for whatever it is for, not just Fuchs'.  There is love and concern for each one in this group and it lifts ones spirit when one is down.  It supports the whole person.

Thanks so much for the Ownership and Leadership team and for each and everyone in the group.

Diane M/WA

What Fuchs Support has meant to me
by
Nancy /VA

I learned about Fuchs support group after being diagnosed for the second time.

I had been diagnosed years before with a corneal problem but not much was said about it so I thought it was something that may or may not happen; and if it did, it would be in my old age.

After suffering with continued vision loss and going from doctor to doctor for five years, I was beside myself.

No one would tell me why my vision continued to go downhill. They said it was due to my age. They said that I needed new glasses. But no matter what I tried nothing helped.

At last in 2004, I heard that corneal diagnosis again. This time it had a name, Fuchs Corneal Dystrophy.

The doctor that diagnosed me didn't seem too concerned at this time either, but I knew that I could not see and was not willing to just let it ride.

I started the drops that he recommended but wanted to find out more about the disease since he really did not tell me anything about it.

I came home and went to the computer to see what I could find out. There were a number of articles on it and two groups that offered support.

I had never been in a support group or any other group online. I was always a little afraid of things like that. Now I was desperate to find out what this disease was all about. So I signed up with the group that seemed to be more to my liking with what they said on their site.

This is when I met Karen P and Jman. I found out that it was a new group and had only around 20 members.

All of the members had this disease and they all seemed to know a lot about it. Everyone was very friendly and willing to answer questions that the doctor hadn't or couldn't answer.

The first thing they told me was it was genetic. So I asked my family members about it but no one had ever heard of it before let alone be diagnosed.

The next thing they told me to do was to find a doctor that specialized in Fuchs, as the symptoms that I described sounded like I was pretty far along in the disease.

They told me that they had a list of questions to help me find a doctor that really knew about this and was able to take care of me.

The first thing I did was write the doctor from years ago and ask him about a doctor that he would recommend. I knew that he had worked with the corneal transplant board. He gave me two names that he said were very experienced in the disease.

I wrote both doctors that he had recommended and sent the questions from the library along with some of my own.

I heard back from both doctors but one was much more informative than the other.

He told me that he would be happy to see me and to call the office.

I did and from there I felt that I had made a good choice.

I would never have been able to learn so much about the disease if it had not been for the support group.
They had more time and patience to answer a lot of the questions and since they had been through the disease themselves they were more able to understand what I was talking about.

The members have been so encouraging and supportive during the time that I have been with them. Every posting brings me closer to them. They have become like family.

For the most part, they are good Christian people and depend on the spiritual aspect as well as the physical. In this I have felt a great deal of comfort.

I do not know what would have happened had I not taken the chance and joined the group. They are such a part of my life today that I can't imagine life without them.

I only hope that I can help someone else that felt like me on that fateful day.

The Lord has truly blessed me in leading me to Fuchs

Support Group.

Nancy P/VA

From Barb D/TX:

I just wanted to thank you for your generous spirit and for all your efforts on behalf of this support group. As a new member it is comforting to know that I am not alone. I try to read all the posts because I feel that even if the

 information doesn't apply to me now , it may sometime down the road.

I appreciate the humor along with the FACTS because if we were grim all the time our lives would be pretty miserable. Sight is so important, because the world is full of beautiful images. I am thankful for the group.  You and the members have provided me with much more information than is available elsewhere and have made me understand that while I can see fairly well now that may not be the case in the future and I have to make the important decisions about my eyesight now !

I am sending this directly to you so that you will know what the group means to me for your anniversary post. Feel free to share as much, or as little with the rest of the folks.  I do not know how you do it all. you have been through so much but still offer so much encourgement to the rest of us.

I appreciate you posting the picture of me and my daughter Lauren. I really

 enjoy seeing pictures of all the members. So far my son doesn't show any

 signs of Fuchs and I plan to have my daughter tested soon...she doesn't wear glasses so she doesn't go for regular check-ups  but I know the importance of catching this early. 

One thing you said that really made me think is that no one except someone that has this disease knows how you really see. That is so true...my husband has has bad

vison all his life but he can't understand why I have so much trouble seeing at night when my presciption is so much milder than his.  Driving at night scares me, but my family doesn't believe/understand this. Thanks so much to you and  all the other members...now I know I am not crazy! 

Take care and God Bless,

Barb D/TX

From Elaine A/MN:

Karen,  I was going to send a Fuchs story but changed my ,mind at the last minute.  I hope the anniversary turns out great.  I am leaving early tomorrow morning.  Will let you know when I return. 

Happy Anniversary Fuchs Support - I discovered Fuchs Support last spring (2004) before I had my first transplant (5/27/04).  This group has become another family to me, sharing concerns and light hearted moments.  The knowledge I have gained has been so important in helping me and my family cope with Fuchs.  My thanks to everyone who makes this group so special.  Elaine A/MN

From Little Bit VA/FL:

I am so very thankful for this website and

appreciate all the time and work that has gone into

it.  When I had my first T in l993, I knew no one that had Fuchs, did not have a computer then, and felt so alone.  But, thankfully I had a good Dr., and he answered all my questions. (The questions I knew to ask!) But with the T on 11/08/04, and having been introduced to this group, it has been so much easier.......more information, more knowledgeable about what to ask, and not as afraid.  And, all the prayers sure do help.....Thank you all

From Lucy B/MN:

Dear Fellow Members - Friends,

I was so thankful to find this group when I went online in early October.  My optometrist had told me when I had my annual checkup the last two years that I have guttata.  He told me that my corneas were degenerating and I would probably need corneal transplants some time far into the future.  He said that I have cataracts and cat surgery is very bad for Fuchs corneas.  I saw a ophthalmologist who told me exactly the same thing.  When I had my checkup this last October 2004, he said that my cataracts were advancing and that he would send me to the U. of MN for surgery.  He also told me that there was no need to see a Fuchs specialist at that time as they couldn't do anything for me now.  I pressed him for more information and finally got him to write down some information for me.  Fuchs Corneal Dystrophy....I've never heard of that.  Actually he had four things written about my eyes.  Fuchs, cataracts, Drusens and congenital cataracts in my right eye (I already knew that.)   

I went online that evening after my appointment and did a search on Google.  The first place it took me was to Dr. Koop where I was then taken to Fuchs Support.  I was so happy to see that there was a support group.  I immediately made out the application and was accepted.  What a relief to finally be able to get some good information on this strange condition that I have!  I have been reading information in the library and reading the posts everyday and feel so much better about the condition.  The people in the group are so friendly that I feel that I know many of the people.  I like the fact that the whole person is supported no matter what the problem.  Fuchs can and does cause other problems such as depression, fear and many others.  Many of us have other problems with our eyes as well as other physical and emotional problems.  I also like the fact that we can ask for prayer knowing that the Lord does hear us and answer prayer.

I saw a specialist in Mpls. in November, but don't think I will stay with him as he doesn't do cataract surgery himself.  He told me that one of his associates would do it.  That's not good enough.  I want a Fuchs doctor who will take care of me with cataract surgery too.  How do I know how good his associate is a far as not disturbing my cornea any more than necessary during the cataract surgery?  Dr. Sher didn't do a cell count on me either.  He doesn't keep the machine for doing the count at his office. He told me that my count would be about 1,000 just by looking.  He did measure my cornea and said that the thickness is normal. He said my Fuchs is a 2 on a scale of 1-10. I have all the problems with driving at night that others talk about, but he says it's my cataracts and definitely not the Fuchs.  Other doctors have told me that also.

Anyhow, I will definitely be looking for another Fuchs doctor before the cat surgery. 

I want to thank Karen P, Nancy P, Paula B and all the others who work so hard for this Group.  You are all very special and we are very blessed to have you.  May the Lord continue to richly bless and help this wonderful Fuchs group.  It is wonderful to have nearly 300 very special people to call upon for information and support.

God's richest blessings,  Lucy B/MN

From Paula B/VA:

When first I was told about Fuchs Dystrophy, my body went numb.  I asked the doctor to spell it out for me.  He wrote it down and handed me the paper. I looked at the name Fuchs Dystrophy. I got up and walked out of office, my head swimming in fear, fear of being blind.  I can tell you from there I felt as if I was in the middle of the ocean, alone.  Not a soul could understand.  Not a soul had ever heard of such a disease.  I decided to research for myself.  I was searching for information, when Karen P. reached out and made me part of this group.  She and Jman helped me to understand this disease.  I finally had someone who could understand, who knew what my eyes were doing to me.  I have tried many times to get my family and friends to read the many papers to explain my situation and so far only my mother has read the info. 

      My husbands had taken me to the specialist and I was sitting quietly going over all the information the doctor had given me, Larry said out of the blue, at least you have an eye disease that something can be done about it.  He was right, I should count my blessings, but you know at that moment I could not see the blessing.  I felt totally alone, drowning in a pool of knowledge and not even wanting to accept this.  I was in denial.  I felt as if the life had been sucked out of me and only a shall remained. I have always been the strong one.  I climbed every mountain and faced all as if I could conquer all.  I am a doer,  I have never allowed myself the time to have a pity party,  I just plowed head on into all and conquered all, but Fuchs Dystrophy really rocked my world, reduced me to severe depression and overwhelming fears, fears that has taken me into places that no human should have to go.  I call it the belly of Hell. This group gave me back my life and the will to live. Yes, I had thought about ending my life, I now know this was foolish.  This group shared and touched me in ways that only each member could begin to understand.  The emptiness is no longer there, even in times of illness.  I can still remain positive through all the storms.  There are no words that can explain the depth of support that each member has shared with me.  No words to express the love I have found here.  We are all truly blessed that two people, Karen P. and Jman felt the need and the desire to start this group.  I know with out a doubt that God has guided them and he gently made the pathway for me to go down so Karen could find me.

I am only one of the members and we all have had so much pain but as we grow I find that each member is a big part of my life and that each has a profound way of touching others.  We are truly blessed for I have many friends that have never experience such a gift of life, such a touch of friendship.  I am so thankful I have each and everyone of you in my life.  Gods Blessings are here with us as we celebrate our one year Birthday.  I want to thank Karen P. and Jman for following Gods words and giving each of us our Fuchs Family.  I am so thankful that God loves us enough to carry us through a storm like this and give us people to help us along the way. 

Paula B/VA

From Jessie/PA:

WHAT FUCHSSUPPORT GROUP MEANS TO ME. 

WHEN I FOUND OUT I HAD FUCHS . I HAD NO IDEA THAT YOU COULD GO BLIND. I CRYED FOR 3 DAYS,AND IN DENIAL.THATS WHEN I FOUND THIS GROUP.THANK GOD FOR KAREN/JAY.I HAD NO PLACE TO TURN. AND THIS GROUP WAS A GOD SENT.THIS GROUP IS MY SECOND FAMILY.THAT IS ALWAYS THERE FOR YOU DAY AND NIGHT.AND ANY QUESTIONS I HAVE SOMEONE IS RIGHT THERE WITH THE ANSWER. OR SOME KIND OF HELP. NOT FROM ONE PERSON BUT FROM ALL IN THE GROUP.THAT IS WHY THIS GROUP HAS A SPECIAL PLACE IN MY HEART.    GOD BLESS EACH AND EVERYONE.                            JESSIE/PA   

 From Rosemary O/WI:

  Dear Karen, Happy Anniversary and Thank you for letting me be a part of this group. You and the group have been a God send to me and I thank all of you. You must be proud of what you have done for so many people. I just want you to know you are appreciated all of you. Again Happy Annniversary and a job well done.              Rosemary O/ WI  

  T FOLLIES

Funny moments in a Post-T'rs Life

From Karen P/WI:

I think the funniest time I had was about 3 or 4 months after my first T.  My dr had broken 2 blood vessels during the surgery and from the day of the T until about 5 months later my eye was red... right after the T it looked HORRIBLE!

My dr had just prescribed my first new glasses lens for the T eye and I went to Shopko Optical to order it.  Now, for those of you not familiar with Shopko Optical, it's MAINLY a place to buy glasses, but there IS an optometrist on staff (I've never seen him).  They are busy there and you take a number and sit down and wait... even if you're just getting glasses adjusted!  So... I'm sitting there waiting for my number to be called... and one of the optometrist's assistants walks by me and SCREAMS!  She exclaimed "My GOD DON'T JUST SIT THERE.... YOU CAN'T WAIT... I'VE GOT TO GET YOU IN TO SEE THE DR NOW"!!!!  I almost died laughing!  I knew she was reacting to my red T eye!!!  I told her the situation and she calmed down immediately.  I told her that if she thought THAT was bad, she should've seen it right after the surgery!  This wasn't bad at ALL!!!

Karen P/WI

_______________________________________

From Paula B/VA:

Cheyenne, my 4 year old granddaughter and I were in the flower garden picking flowers.  I told her to smell her bunch 'cause they smelled good!  She looked at me and told me "Stop smelling them Meemaw!!!"  I said "Why?  They smell so good!"  and she she said "because you're going to smell a bee up your nose!"  which I hadn't seen!!!

This was after my first T, when my fuchs' eye was bad and the T eye was worse!

Paula B/VA

_________________________________________________

Hi Karen,
I am always thinking and wondering.

I took off for a bus ride today, it took a lot of miles and my legs
walking for about 5 miles.

Yet while i was waiting, i was looking just out of the t eye, and again I
just saw three people walking where there was only one walking.

Then the t eye was so clear and it lasted for about 15 minutes, and then
i noticed the right T eye was taking over for the left fuchie eye.  as I
have noticed the fuchie eye is failing more and more.

so i continued to look out of the T eye and images stayed crisp, clear,
good color and then it faded.  i tried blinking the right T eye and it
just was not there, ( the sight)  I turned and about 20 feet was a sign
for "We have Gas for you" in big letters and I could see it clearer with
the T eye than the fuchie eye.

I think at times the T eye is the dominate eye, yet I have not always
paid attention to it,

 yet i had nothing to do but wait for the bus for about 35 minutes so i
just kept looking with one eye, then the other eye, always closing one.

anyone that is a good one for me!!  Your choice.
Karen L CA

Paula B/VA wanted me to add this to the T follies… she had both of her T’s (one 8 months old, the other only 2 months old), and was in charge of putting material in the FuchsSupport group calendar.  She couldn’t see that when she entered Little Bit’s appointment to get a YAG treatment done she had typed YAK instead.  This created quite a bit of posting excitement on the posting board!  These are clips taken off our posting board just as they appeared on the board (including the colors, fonts, and animations that were on them!):

one, Little Bit!!!     

Anyone else notice that Little Bit's having her first

 

yaK tomorrow?  I hope you never need another one,

 

Little Bit.  A Yak is kinda hard to feed and take care

 

of, I would think....    

Karen P/WI
- - - - - - - - - - - - - - - - - - - - - - - - -- - -- -

Ok, got one!  I THINK this is a YAK....

 

    Let us know where you're going to

 

keep it Little Bit!  Karen P/WI

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

Paula, the surgeon's office just called and my YAG has been re-scheduled for March 3, as he has to attend a funeral tomorrow.....I guess I just have to wait another week>>>>

Little Bit / Va,- Fla.

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

Paula's laughing right now (we're still on the phone)

 

and she's saying "Lord help me!".... LOL...

 

Little Bit, hope your YaK doesn't starve to death

 

while waiting!  

 

Karen P/WI

 

ps- hope you're getting a laugh out of this like

 

WE are... and aren't hurt by it!  It was a vision

 

problem of Paula's... LOL..... she didn't do it

 

on purpose.

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

Help !!!!!  What do I feed this yaK for a week????  He is 5 feet tall !!!!  Just my height !!!

 

 Paula, bless her heart, as bad as she feels, she is still trying to do her part in

helping>>>>>She does not need to apologize......I will still send prayers her way....even thought she did send me a YAK>>>>  Maybe next week, my YAG will turn out even better than if I had it done tomorrow.

Little Bit / Va. - Fla

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

Oh, and what the heck are you going to feed

 

that yak???????  And will it keep you up all

 

night yaking??????

 

Mike B/FL

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

Very good Mike !!!!!!!  I guess it will be a WEEK of yaking!!!!!!  Paula sure made me "giggle" today !!!!!!!

Little Bit / Va. - Fla

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  Hadn't thought of THAT one, Mike!  Good one!

 

Karen P/WI 

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

Can we borrow your Yak

 

for some Yaking tomorrow night in chat, Little Bit??? 

 

Karen P/WI

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

Maybe Karen.......I will think on it !!!!!!

Little Bit / Va. Fla

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That's Little Bit for you.....Yakkity yak, don't talk back.

Nancy/VA

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aren't we??   

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

ADVERTISEMENT Nancy, say the prayers for me anyway...although my surgery has been rescheduled for next Thurs.  With all this YAKKITY Yakking, I will probably need it to stay out of trouble............ Little Bit / Va. - Fla. - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - I hope mine IS A YAG AND NOT A YAK.LOL.    KATHY G.\MA              IS THIS A YAK??? - -- - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - -

Kathy G., it looks like a yak to me !!!!!!  If the YAG does not work, I might go back and ask the doctor for a yak !!!!!  Don't you have one on March 16 ?   Before you know it, we will all be seeing real good !!!!  We might even send Nancy P. to have one, YAG or yak !!!!!!!!!!!!!!!!!

Little Bit / Va. - Fla.

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HI EVERYONE,
THIS MESSAGE IS TO PAULA, I LIKE HER "TYPO AND TO LITTLE BIT/FLORIDA. IS
THAIS NOT WHAT ALL OF US ARE DOING BY WAY OF E-MAIL, "YAK, YAK, YAK"

( ANOTHER FORM OF TALKING.)

TALK, TALK, TALK, OR YOU ARE "YAKING TOO MUCH ON THE TELEPHONE" !!! i
LIKED THE COMMENT.


AS FOR THE WATER BUFFALO, SHE CAN KEEP IT IN HER BACK YARD AND WE WILL
ALL FEED IT.
KAREN L CA
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Little Bit, I think I will pass on the YAG and the YAK and go straight for the YAP!

Nancy/VA

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

Well, ......we may have to look into that also.......Whatever we can get to work!!!!!!!!!!!!

Little Bit / Va. - Fla.

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I do not want anyone yagging or yakking on me. I want to just SEE! LOL!

Nancy/VA

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

AND IF YOU'VE MADE IT THIS FAR

YOUR POOR EYES ARE PROBABLY ALL WORN OUT!!!  HAPPY ANNIVERSARY FUCHSSUPPORT!  I WISH ALL THE MEMBERS CLEAR, CRISP VISION WITH NO BLURRIES, NO FOGGIES, AND NO GLARE!

LOVE,

KAREN P/WI

CO-OWNER fUCHSsUPPORT!!

WHAT A GREAT GROUP!

WHAT WONDERFUL PEOPLE!