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Post by elaine on Aug 10, 2015 22:19:41 GMT
Just a quick update for those following my thyroid eye disease. The Opthamologist at Walter Reed decided he wasn't experienced enough in TED to continue to treat me, so he referred me down to Ft. Belvoir to an opthamologist that has some thyroid eye experience. The IV Steroids didn't work - they stopped things from progressing temporarily, but the TED flared back up after the last treatment. So, today the new Opthamologist set up a referral to radiation oncology for two weeks of daily radiation to my eye muscles to see if that helps. He also gave me cortisone shots directly to my eye muscles - ouch! Quite painful and it looks like my husband used my face as a punching bag - I think there may be bruising when the swelling goes down. We may need to do this monthly for a while. They can't schedule the series of surgeries to repair things and try to fix the double vision until my eye disease calms down and dies out. It can take anywhere from another 6 to 18 months. I'm trying not to get too down about it, but I hate not being able to schedule things like runDisney races, because I just don't know when the surgeries will be. That, and my face really hurts from the shots today - and I'm dreading taking my son to the orthodontist tomorrow and having them see me like this. If I could pull off sunglasses indoors, I totally would!
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Nicole in TX
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Jun 26, 2014 2:00:21 GMT
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Post by Nicole in TX on Aug 10, 2015 22:20:55 GMT
Goodness! You are a tough cookie! I will pray for healing for your eyes and that they can do the surgery soon.
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Post by peano on Aug 10, 2015 22:23:50 GMT
Elaine! Shots directly into your $u@king eyes! I can't even imagine. Well, it sounds like the next few weeks are going to be a challenge and I can understand why you're feeling down. We're here for you.
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Post by KelleeM on Aug 10, 2015 22:25:24 GMT
I'm so sorry you have to deal with all of this...eye issues are horrible! I would totally wear the sunglasses indoors. If anyone asks just say you are having a bad light sensitivity problem.
I wish you well!!
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moodyblue
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Jun 26, 2014 21:07:23 GMT
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Post by moodyblue on Aug 10, 2015 22:26:44 GMT
My former hairdresser had major eye problems due to thyroid disease and she had surgery to fix the issues - a major improvement but it was a long process and quite the ordeal. I'm sorry you have to go through all of this.
And, I'd totally do the sunglasses inside if you can.
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Post by KikiPea on Aug 10, 2015 22:30:30 GMT
What they said. Yikes! I'm sorry, and hope the disease heals up quickly for you so that you can move on.
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marianne
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Jun 25, 2014 21:08:26 GMT
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Post by marianne on Aug 10, 2015 22:30:50 GMT
Wow, I'm so sorry you're having to deal with this. Hey, if Roy Orbison could get away with it, so can you... wear those sunglasses inside! Sending good and healing thoughts your way. Take care...
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Post by snappinsami on Aug 10, 2015 22:34:59 GMT
Oh my goodness... I'm so sorry you're dealing with this. I've been dealing with a scleritis for almost 5 months now that's not responding to steroids and I've been incredibly frustrated. I cannot imagine having to deal with what you're going through. I do hope that your treatments and surgeries give you some relief. And yes, do wear the sunglasses inside if they help.
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purplebee
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Jun 27, 2014 20:37:34 GMT
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Post by purplebee on Aug 10, 2015 22:35:53 GMT
Yeah, Elaine, keep those shades on. Prayers and hugs for you, stay strong, hopefully your new Drs will come up with a better plan to speed your recovery.
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Post by pierkiss on Aug 10, 2015 22:50:16 GMT
I'm so sorry! It sounds so painful! You should totally wear the sunglasses inside tomorrow. If anyone says something to you just tell them they're prescription and you left your regular glasses in the car!
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Post by SabrinaM on Aug 10, 2015 23:09:16 GMT
Ouch!! I hope you're well soon. ((Hugs))
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MaryMary
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Post by MaryMary on Aug 10, 2015 23:14:26 GMT
Oh gosh, that sounds horrible. I'm sorry you are going through this.
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GiantsFan
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Jun 27, 2014 14:44:56 GMT
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Post by GiantsFan on Aug 10, 2015 23:17:38 GMT
Yowza! I hope your new doctor can help.
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Post by elaine on Aug 10, 2015 23:25:10 GMT
Thank you, everyone! I told my husband over pizza dinner that the peas said I should wear sunglasses tomorrow and he asked if I posted a picture (he winces every time he looks at me) and I said " H3ll No! I like those women - no need to traumatize them with a pic of my face!" He had the wherewithal to laugh. I'm going through my sunglasses to see which will be best for indoor-wear tomorrow. FTR - I'm not going to contradict the rumors that I DID stop by the Army Exchange on the way off-base and pick up a new Brighton necklace for myself.
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ComplicatedLady
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Post by ComplicatedLady on Aug 10, 2015 23:30:35 GMT
I'm sorry you're having to deal with this. I'm another one saying wear the sunglasses indoors. If anyone says anything or gives you a funny look, just shrug and say 'eye procedure.' Keep it nice and vague and you'll be fine. Good luck!
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Post by katiekaty on Aug 10, 2015 23:32:09 GMT
Sorry for the pain and misery. Hope it all goes well over the next months and everything gets fixed!
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Deleted
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May 20, 2024 13:24:35 GMT
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Post by Deleted on Aug 10, 2015 23:46:15 GMT
I'm so sorry Elaine! I know it has to be done, but you are one brave woman. I hope things work out I very much understand how you want to be 100% functioning with your kids.
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tuesdaysgone
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Post by tuesdaysgone on Aug 11, 2015 0:02:42 GMT
Yikes! So sorry you are enduring this. I think I had a nightmare once that involved getting a shot in the eye. Just take the proverbial one day at a time. Hoping for the best for you.
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Post by beachhappy22 on Aug 11, 2015 0:19:15 GMT
Sorry you are dealing with all of this. Those shots sound very painful!! I admire your great attitude dealing with all of this! Go ahead and wear those sunglasses inside and make a fashion statement!
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Post by mollycoddle on Aug 11, 2015 0:19:37 GMT
I hope that your eye disease calms down sooner rather than later! And I would wear the sunglasses indoors.
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Post by elaine on Aug 11, 2015 0:31:02 GMT
Yikes! So sorry you are enduring this. I think I had a nightmare once that involved getting a shot in the eye. Just take the proverbial one day at a time. Hoping for the best for you. Seriously! I'm so glad that the doc had me focusing on a spot across the room so that I didn't see the needle, even though I could feel it. It was the stuff of nightmares! LOL! I'm so sorry Elaine! I know it has to be done, but you are one brave woman. I hope things work out I very much understand how you want to be 100% functioning with your kids. thanks! I know that you know how it is. Since it is summer break until Sept 8, I'm going to have to bring the kids with me for the radiation treatments. I have a feeling that it will be a challenge for everyone the first week. Older son will want to bolt and explore the hospital and younger son will freak that he can't be with me while they are irradiating me.
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Post by lucyg on Aug 11, 2015 0:40:47 GMT
gahhhh. I'm so sorry! Hope the doctors can manage to fix you fast and forever.
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Deleted
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May 20, 2024 13:24:35 GMT
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Post by Deleted on Aug 11, 2015 0:52:10 GMT
I am sorry I wish I had something better to say or had more encouragement. Hopefully the new doctor will know more about it and can treat it successfully!
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Deleted
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May 20, 2024 13:24:35 GMT
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Post by Deleted on Aug 11, 2015 0:52:34 GMT
Ouch!
I hope the surgeries can be scheduled quickly so you can get on with the things you enjoy doing.
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akathy
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Jun 25, 2014 22:56:55 GMT
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Post by akathy on Aug 11, 2015 0:57:13 GMT
That really sounds difficult. I'm sorry you're going through that Prayers for you.
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valleyview
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Post by valleyview on Aug 11, 2015 0:58:22 GMT
Thanks for the mental picture. I'm not sure that seeing could top our imaginations! Seriously, elaine, I'm so impressed that you can laugh about some of this. Sometimes we just have to laugh. I hope you're doing better soon.
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Nanner
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Post by Nanner on Aug 11, 2015 1:09:38 GMT
That sounds AWFUL! Hoping it all comes together for you quickly and you can get this all dealt with and back to normal.
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Post by momof3pits on Aug 11, 2015 1:11:32 GMT
I'm sorry for what you are going through and sure hope you can get some relief soon!
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Post by *christine* on Aug 11, 2015 1:17:49 GMT
Oh my goodness - eye stuff freaks me out - I can't imagine! Are you able to drive with the double vision? I wish I lived closer, I've been out of work and DH and DS are going away for 10 days, I've become a very experienced take people to doctors appointments between my mom and my MIL! I wish I could help! I'd even enjoy some exploring with the boys!
I hope this new plan works for you and you get some relief very soon. Good luck.
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Post by elaine on Aug 11, 2015 1:28:46 GMT
Thanks again, everyone! By the grace of g-d, PBS was airing the Simon and Garfunkle Concert NYC Central Park Concert tonight and I had a great sing-a-along, much to my family's dismay. As long as I look straight ahead, I don't have double vision - it is only when I look up, down, or sideways that I have double vision. So driving is still okay for now. My Opthamologist was honest and told me that I can only hope for the double vision to be corrected for looking down (for reading with glasses) and straight ahead (which is okay for now, but may change if the TED continues). So, here's hoping for some correction!
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