[brawson]

in reply to: The impact of GDATF conference #1180425

I now have a date for my orbital decompression surgery, Oct 10. I am excited and nervous about this. I have impatiently waited for the time that I might get some relief and it is finally right around the corner.

Barbar

[brawson]

in reply to: double vision #1175197

My double vision came on instantly and then as quickly as it came, it went. I woke up one morning and the double vision was gone. I was wearing prisms and the images were all scattered. It came back a few days later, then was gone completely and has been since last May. Driving was very hard and I needed to drive to work so I had prisms ground into my lenses. Because of the changes, it took 3 sets of lenses during the 1 1/2 years I was experiencing double vision. I understand that they have stick on prisms as well.

[brawson]

in reply to: Graves’ in “seniors” #1174667

Boy can I relate on the aging issue. When I first went to the opthamologist about my double vision, his response was that I was aging. (I was 58!) I said, “Hmm, my mom is older than I am, she doesn’t have double vision. Is double vision a normal aging process?”. Clearly something is causing it and I explained that I had been treated with RAI a year earlier. He still insisted it was that it was that I was getting older. He was going to give me prisms. I asked to see a neuro-opthalmologist and was given the diagnosis of TED.

Barb

[brawson]

in reply to: Quitting my job #1174702

I understand your challenge of work and the need to get out. I am sorry that you had unsupportive workers. I have noticed that people do want you to get on with it (as if you could). Some people have asked me if I should just get another doctor to fix it. They don’t understand that the waiting is necessary when you are in the active phase.

While I didn’t have unsupportive coworkers, my job last year as an Assistant Principal of a middle school was extremely stressful and I had to change. Going out on the schoolyard hurt my eyes. The challenges of discipline at the middle school was just too much. My school district was amazing in creating a job at the same level as a coordinator at the Central Office. It is still such a struggle dealing with this disease. In this new role, I am constantly presenting to groups of people and I have noticed that I am so conscious of my appearance. It used to be no problem for me to get up in front of people but now my confidence is shaken. I try to forget about my appearance and when I do, I can become myself again but it is fleeting. Going around the district, I am expected to enter classrooms and observe students, talk to them, etc. What is most devastating is that they are frightened of me. The outgoing students will ask me about my eyes and I can tell them I have a disease and that someday I can get better but I see the look on the student’s faces and it pains me. I can retire this year although I intended to stay another one or two years. I still have active TED after almost two years and hope to be able to get surgery within this year but my TSI was 520 in July. The idea of retirement, even with a little less money than I had hoped for seems so pleasing because I could focus on my personal health. I imagine myself getting up and taking a walk as opposed to rushing around to get ready to face the day with this disease. I have some big decisions to make.

Barb

[brawson]

in reply to: Struggling to stay patient and optimistic #1174405

Thanks for the thoughtful response. I will look into the tinted glasses. I know that I do not want to have surgery until I am sure to be in the cold phase. What I wonder is if there is some way to quell that immune response and speed the process up.

I have been happy with my HMO for years and I would not continue with them if I didn’t think the treatment was appropriate. My worry is down the line with the surgery. I have had to be my own advocate but I accept that it is my responsibility to get as much info as I can. I had to insist that I be referred to the neuro opthamologist and recently when I had a torn retina, a retina specialist. When the time for surgery gets closer, I will definitely explore all options including the Shiley Center.

Thanks again,
Barb

[brawson]

in reply to: Save the Date – San Diego Conference & San Francisco Patient Education Event #1172434

I will look for you, Kimberly. You have been a great source of information through this forum and I would like to thank you in person.

Barbara

[brawson]

in reply to: Save the Date – San Diego Conference & San Francisco Patient Education Event #1172430

I have my reservation for the “Let’s Face it together” meeting and am very excited about it. I also made hotel reservations for the October event and look forward to networking. I feel a great need to gather information from a variety of sources. I am 1 1/2 years with TED and still in the active stage. I don’t like to complain but my discomfort is great. The light sensitivity and burning gritty eyes have limited my driving and enjoyment of the outdoors and life in general. My appearance robs me of my confidence with people. I am facing surgery if I can get past this active stage and I want information. I want to take reins and not let this disease take control of my life. I anticipate learning a great deal and expanding my sources of information and options.

Barbara

[brawson]

in reply to: overnight correction of double vision #1171277

Hello All,
I was so excited that the double vision was gone and that my pupil seemed to be directed straight forward as opposed to down and to the right. Then as quickly as it changed, I had the double vision again. Yikes I hate what this disease does to me. I am always second guessing what a symptom means. My doctor just told me that it is a sign that my disease is still active and told me to hang in there. I was wishing that this was a sign of remission. I need to get the array of glasses out for whatever my vision is day to day.

Barb

[brawson]

in reply to: Eyes do not close-need all suggestions, especially for sleep #1170228

My dry eye symptoms are very painful as well. Sometimes I just feel like pulling my eyes out. When I use the Restasis, it burns. I thought, Gee that’s not good, perhaps I shouldn’t use it. The Dr. said I should continue using it because it helps the tearing. I use hourly Celluvisc and that helps. I find the days I am really busy and miss make the next day worse. Taping my eyes at night has helped but the morning removal is painful. I have tried patches, paper tape, and smooth medical pads with the paper tape. When I was told to tape my eyes, I had no idea how to do that at first and I continue to experiment. My doctor gave me a book on TED and it recommends applying a thick layer of tear supplement then while keeping the eye shut, squeeze the cheek below the affected eye moving it upward and placing mild millipore tape vertically from eybrows down to cheek. This technique allows for the cheek to assist in keeping the eye shut. Before that, I would pull from the top down. It seems easier this way and less painful to pull tape off. The tape I use is a paper bandage tape. I need to look into what millipore tape is. Anyone know a brand of tape that doesn’t hurt when removed?

Barb

[brawson]

in reply to: Two Questions- Stress and Rituximab #1170333

Thank you for the link on rituximab. All the studies I have read seem to be very limited in scope with only a small sample of patients. I have had two infusions of corticosteroids and it has not been effective in reducing the proptosis. The Dr. said he would not recommend another infusion of steroids because the solmedrol is strong medicine and hard on the body. I have to choose to try the rituximab or be more conservative and wait for the active phase to pass and see if my eyes recede on their own. Decisions like this are part of the challenge of this disease.

I ordered the sunglasses from eyeco today. I am hoping they can be worn over my glasses since my double vision is significant and I can’t be without my prisms.

This forum has been such a help for me. I have been going it alone too long. It’s good to know how others are dealing with it.

Thanks,
Barbara

[brawson]

in reply to: Graves Disease &TED difficult time : ( #1170317

Please share your experiences at the Shiley Eye Center. I have been contemplating making an appointment there for second opinion. I live in Northern CA. but have relatives in Orange County. I read on their website that they treat the whole person and have done some research on the psychological impact of TED. I would be interested in hearing how it went for you.

Barbaraq

[Author]

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