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Devastated Beyond Belief **UPDATED 11/10**
Well today we are leaving for Boston for an appointment tomorrow morning with one of the best doctors in the country that specializes in this terrible eye disease. We were supposed to go in December but thank God they had a cancellation and bumped us up.
Please keep my daughter in your prayers.
*******************************
Thank you everyone for all of your prayers and kind words.
I had to take my post down because a family member was lurking, put 2 + 2 together, and chose to make my personal business known to other family members, which I decided I was not ready for. As I said, my daughter doesn't know and I don't know when we will tell her. It might not be necessary for awhile, and I would hate for her to find out from others about her disease.
Message edited 11/10/2010 2:07:44 PM.
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Posted 8/9/10 9:19 AM  |
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Long Island Weddings
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CathyB
Member since 5/05 19403 total posts
Name:
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Re: Devastated Beyond Belief
 
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| Posted 8/9/10 9:22 AM |
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ladybug8
LIF Adult
Member since 3/07 2660 total posts
Name:
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Re: Devastated Beyond Belief
I'm so sorry you are going through this. You mentioned that this could happen 20 or 30 years from now. A lot can happen in the medical field--new medicine, surgery, etc. I will keep you in my thoughts. Please keep us posted.
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| Posted 8/9/10 9:30 AM |
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nrthshgrl
It goes fast. Pay attention.
Member since 7/05 57538 total posts
Name:
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Re: Devastated Beyond Belief
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| Posted 8/9/10 9:32 AM |
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LoriH
There's no place like home
Member since 8/07 4110 total posts
Name:
Lori
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Re: Devastated Beyond Belief
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| Posted 8/9/10 9:36 AM |
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saraH
happy birthday sweet kate!
Member since 5/05 16555 total posts
Name:
I know that God exsists, I held her in my arms...
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Re: Devastated Beyond Belief
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| Posted 8/9/10 9:36 AM |
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CrankyPants
I'm cranky
Member since 7/06 18178 total posts
Name:
Mama Cranky
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Re: Devastated Beyond Belief
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| Posted 8/9/10 9:37 AM |
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LuckySV
LIF Adult
Member since 10/05 4675 total posts
Name:
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Re: Devastated Beyond Belief
I'm so sorry you're dealing with this. Many hugs and prayers
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| Posted 8/9/10 9:38 AM |
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Finally1108
My two boys
Member since 12/08 3541 total posts
Name:
Angela
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Re: Devastated Beyond Belief
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| Posted 8/9/10 9:39 AM |
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lvdolphins
My Loves!
Member since 5/05 46292 total posts
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Re: Devastated Beyond Belief
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| Posted 8/9/10 9:39 AM |
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MarathonKnitter
HAPPY
Member since 2/07 17374 total posts
Name:
EMBRACING CHANGE
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Re: Devastated Beyond Belief
you're very smart and brave to know that you need to talk to a professional about your feelings.
please keep us posted
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| Posted 8/9/10 9:41 AM |
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mathteach
Roll Tide!
Member since 8/08 3169 total posts
Name:
Christine
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Re: Devastated Beyond Belief
My step-father has this. Please FM with any questions you may have.
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| Posted 8/9/10 9:43 AM |
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Tulips915
................
Member since 8/08 6851 total posts
Name:
Me
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Re: Devastated Beyond Belief
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| Posted 8/9/10 9:44 AM |
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PaddysGirl
Little princess is here!
Member since 4/07 5923 total posts
Name:
Crystal
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Re: Devastated Beyond Belief
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| Posted 8/9/10 9:46 AM |
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FireBelle10
LIF Infant
Member since 5/10 300 total posts
Name:
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Re: Devastated Beyond Belief
I'm so sorry you are dealing with this. Lots of prayers and hugs for you and your daughter.
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| Posted 8/9/10 9:49 AM |
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Deeluvsvinny
DONE
Member since 10/08 4952 total posts
Name:
Whatever
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Re: Devastated Beyond Belief
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| Posted 8/9/10 9:51 AM |
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summerBaby10
let's be nice
Member since 9/07 10208 total posts
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Wifey
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Re: Devastated Beyond Belief
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| Posted 8/9/10 10:11 AM |
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Kara
Now Zagat Rated!
Member since 3/07 13217 total posts
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They call me "Tater Salad"
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Re: Devastated Beyond Belief
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| Posted 8/9/10 10:13 AM |
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eddiesmommy
best buds!
Member since 5/09 11524 total posts
Name:
Melissa
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Re: Devastated Beyond Belief
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| Posted 8/9/10 10:24 AM |
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Goobster
:)
Member since 5/07 27557 total posts
Name:
:)
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Re: Devastated Beyond Belief
I know when times are tough, you feel like you are going crazy. That's it's just a bad dream that you will wake up to find everything's ok. But it's real, not a dream. What you are feeling right now is normal, you are in shock. It's just so hard to believe something so awful could happen. As some time goes on, and you aren't in shock anymore, you may be able to see the glimmers of hope. Medical progress in today's society is truly amazing. You cannot believe how a year can change things re treatment for various conditions that are degenerative. I am FMing you also.
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| Posted 8/9/10 10:34 AM |
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Diana712
RIP my beloved Brother Richard
Member since 5/07 6710 total posts
Name:
Diana
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Re: Devastated Beyond Belief
Dear Devastated,
I am a friend of the person whose account I am responding on.
I am a 53 year old woman whohas been dealing with eye disease since I was 4. The condition was not what your daughter has but I am going to give you a little history and try to give you the support and encourgement you need.
I started with a diease called uvitis. this is an autoimune diease that causes the eye to attack its self. I started having totake steroids and have mulipule surgerys over the next 10 years. This diease is one of the leading causes of blindness. By the time I wass 13 the steroids caused me to develope cataracts. Theydid not have to be removed until I was 22 and over the course ofthouse years they had developed new procedures that were far advanced from when I was 13. In my late 20,s The uvitis and cataracts along with the medication caused me to develope glacoma which is the #1 cause of blindness. Neeless to say I was tired of all ofthis but I was a good patient took my medication as directed some times ever hour on the hour for weeks I had 3 invasive glacoma surgeries and I could still see and drive for many years. However over the next 20 years I developed corneal edema which causes the cornea to swell. This is the one that really took me by suprise and it did cause me to become legally blind. However because time allowed doctors to continue to develope new procedures I was able to have new corneal transplant last year and can see again. While I donot see like I used to and I could bearly see at all and I am stilly legally blind, I got in touch with the NYS commision for the blind who got me services to help me lead a normal life. I go out I take busses I shop one ofmy mobillity trainers (the person who taught me to use the white cane and navigate safely) told me and I know it is true thier is nothing a sighted person can do that a blind person cannot learn to do. I have gotten compputer software that allowes me to use the computer and they are now helpping me to find work. I am on ssd but I can still be a paroductivee member of socity.
My mother went through what you are going through and I am a mother and I know how I would feel if this was my son and not me. However if you are strong and positive and encourging and assure your daughter she will have a full and productive llife and she accepts this and lives this way she will. It is not as easy for vissually challenged people at all, but keep in mind there are others wth worse problems. Find the gratitude in just having visual problems and not something worse. I thought I would killl myself yearsm ago when I had to stop driving but you know what I did'nt. I learned to adapt and kept moving forward. I did spend many years in my younger years fearing blindness and I still went blind and I wasted a lot of time being afraid. You know what it was a waste. I lived through the 4 eyes and other teasing that kids do and came out on the otherside a stronger independant person with a beautiful son a full life, people who love me and generally good health for a 53 year old. Blindness is not the end of your daughters life it is just a new begining with different adventures and life obsticles we all go through.
So your husband is right, keep on top of it find the best doctors you can for her condition, try to get associated with a hospital with a good eye department (NY eye and ear, Mt sini etc)
Depending where she is at anytime these are the places that will have best research, the new treatments in trial, etc.
I hope this helps. I have been there lived this and my life has gone on.
I wish you the best of luck. Hang in.
Regards,
Diana's friend
ps as you will note I can't spell at all.
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| Posted 8/9/10 10:47 AM |
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Christine
2nd verse same as the 1st
Member since 5/05 15287 total posts
Name:
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Re: Devastated Beyond Belief
eta....Diana's friend. Thank you for sharing your story.
Message edited 8/9/2010 10:51:06 AM.
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| Posted 8/9/10 10:50 AM |
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LadyBug1209
Mommy to FOUR little men!
Member since 8/08 9655 total posts
Name:
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Re: Devastated Beyond Belief
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| Posted 8/9/10 10:51 AM |
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CouponKT
Our family is complete
Member since 6/06 16494 total posts
Name:
K
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Re: Devastated Beyond Belief
hugs to the OP and that was very kind of Diana's friend to write.
There is hope, there is treatment and there is motherly love that cannot shadow this condition
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| Posted 8/9/10 10:52 AM |
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Aga
hello baby Albert
Member since 9/05 7750 total posts
Name:
Aga
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Re: Devastated Beyond Belief
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| Posted 8/9/10 10:54 AM |
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