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Joined: Jun 2003
Posts: 2,884
Presidential_AS_Kicker
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OP
Presidential_AS_Kicker
Joined: Jun 2003
Posts: 2,884 |
Hello, Kickers!! Yes, I am alive!  It has been a while since I have posted but KA has never been far from my thoughts and will always be in my heart. My 23 yr old daughter was diagnosed with AS today. She has a case of iritis so acute that her iris has attached to her retina. We are hoping that steroid drops will detach the iris but we are not sure of the prognosis. She needs a rheumatologist in the Greensboro/High Point area of North Carolina. Does anyone have a rheumy in the area? I would truly appreciate any suggestions. I am heartbroken. Although my brain says that I am not responsible, my heart feels so guilty. I just want to kiss it and make it go away like I did when she was a baby. I never truly thought that I would have to help my own child manage life with AS. I had hoped that their dad's genes would prevail.  Thanks for letting me vent! Holly
[color:"#006666"]Life itself is the most wonderful fairy tale. ~~Hans Christian Andersen
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Joined: Jan 2004
Posts: 9,848 Likes: 6
Very_Addicted_to_AS_Kickin
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Very_Addicted_to_AS_Kickin
Joined: Jan 2004
Posts: 9,848 Likes: 6 |
Holly - Great to see you here after such a loooong time - have missed you - and your photography - but...what a sad event to have you posting. Am so sorry to learn that AS has affected your daughter. Positive thoughts and prayers that she finds a rheumy in her area and an ophtho who will manage the iritis problems. (((HUGS))) and prayers my dear  Molly C
MollyC1i - Riding OutAS
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Joined: Jul 2012
Posts: 74
Active_Member
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Active_Member
Joined: Jul 2012
Posts: 74 |
Hi, Holly! I'm so sorry about your daughter also having AS. I can recommend a rheumy in the Durham/Chapel Hill area, maybe an hour drive away. I actually drive 4 hours to see her. She really cares and listens well. Every 6-8 weeks, she schedules 40 minutes for my appointments, perhaps because she knows how far away I live.
When my case became more difficult, she set up an appointment for me with a specialist at Duke, to get another opinion on my treatment options. When my disease became steadily severe and I could no longer handle even a part-time job, she was very helpful and supportive when I had to apply for disability.
Can your daughter be seen by a specialist at the Duke Eye Center in Durham? They handle very difficult cases, although it can take months to get an appointment.
PM me if you would like her name. I wish you and your daughter the very best!
Psoriatic spondylitis for just 3 years, already on disability. Failed with anti-TNF's and methotrexate; can't take NSAIDS; not on any regular pain meds. On the autoimmune protocol of the Paleo diet, with pretty good results so far. Also have to avoid high-oxalate foods.
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Joined: Mar 2002
Posts: 9,552 Likes: 10
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Joined: Mar 2002
Posts: 9,552 Likes: 10 |
Hello Holly,
Great surprise to see you posting, wish it were under better circumstances.
Cannot help with doctor unfortunately, best to your daughter that all turns out well.
Tim
AS may win some battles, but I will win the war.
KONK - Keep ON Kicking
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Joined: Jul 2010
Posts: 1,191
Steel_AS_Kicker
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Steel_AS_Kicker
Joined: Jul 2010
Posts: 1,191 |
I am very sorry for you. I will pray for your daughter and for you too. I hope her eye heals well without any damage, take care.
Diet change has improved my RA. I feel best eating raw veggies and some fruits and avoiding grains, sugars, nightshades, beans and dairy. Sed rate dropped from 65 to 19, but it took over a year. www.fatsickandnearlydead.com excess fat/oils = pain for me recipes for raw food on Youtube "raw food romance" and "healing josephine" Josephine is in remission from RA after two years by change diet/exercise
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Joined: Jun 2003
Posts: 2,884
Presidential_AS_Kicker
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OP
Presidential_AS_Kicker
Joined: Jun 2003
Posts: 2,884 |
{{{MOLLY}}}}
I have missed you too!!
Great news today from Chelsea! Her retina and iris have parted ways and the optho is positive that there will be no long term affects!!
I hope you are doing well my friend!! Huge hugs and Happy Holidays!
[color:"#006666"]Life itself is the most wonderful fairy tale. ~~Hans Christian Andersen
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Joined: Jun 2003
Posts: 2,884
Presidential_AS_Kicker
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OP
Presidential_AS_Kicker
Joined: Jun 2003
Posts: 2,884 |
Sundance,
THANK YOU!! I saw my rheumy today and he is asking a friend of his at Duke so maybe it is the same rheumy?
We received good news on Chelsea's eye today. It is healing well and optho doesn't think there will be permanent damage.
I would be greatly appreciative if you would PM your rheumy's name. Thanks so much!!
Happy Holidays! Holly
[color:"#006666"]Life itself is the most wonderful fairy tale. ~~Hans Christian Andersen
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Joined: Jun 2003
Posts: 2,884
Presidential_AS_Kicker
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OP
Presidential_AS_Kicker
Joined: Jun 2003
Posts: 2,884 |
TIM!!!!
How are you my friend? I hope life is wonderful for you!!! I have often wondered how you are!!
We need to catch up!!
Big Bama Hugs!!!! Holly
[color:"#006666"]Life itself is the most wonderful fairy tale. ~~Hans Christian Andersen
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Joined: Jun 2003
Posts: 2,884
Presidential_AS_Kicker
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OP
Presidential_AS_Kicker
Joined: Jun 2003
Posts: 2,884 |
Thank you, ValsMum!!
It seems your prayers were heard. Chelsea's eye is doing great and no permanent damage is anticipated, as of today!!
I really appreciate your prayers!!! Happy Holiddays! Holly
[color:"#006666"]Life itself is the most wonderful fairy tale. ~~Hans Christian Andersen
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Joined: Jan 2010
Posts: 2,105
Major_AS_Kicker
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Major_AS_Kicker
Joined: Jan 2010
Posts: 2,105 |
good news! hope you can get onto really excellent long term follow up for her.
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