[rapunzel]

in reply to: Concentration/problemsolving/tests #1173028

I have walked miles in your moccasins. I went through my BA, MA, and now my PhD with Graves. It developed two years into my BA. Grad school has been tough. Now, after a three-year bout with severe hypothyroidism, I’ve got mere weeks to finish writing my dissertation and my concentration is awful. Also, I’m plagued by self-doubt about my ability to do this, because I feel like Graves will pull the rug out from under me any minute.
Am I letting this stop me? Hell, no! I keep getting up, walking around, feeling my doubts, and then sitting down again and writing some more. I get up, make more coffee, call a friend for encouragement (often they just whine to me about their problems) and then sit down and write some more.

I’ll be your encouragement buddy, if you like. I promise you that you can do this. I’m doing it, little by slowly, and I might not meet my deadline, but I refuse to worry about this. Graves has taken a lot from me but it’s not getting my PhD!

Email me if you like. I would love to inspire you with my experience, strength, and hope because that will help me stay inspired, too — we can help each other.

Best,
Rapunzel

[rapunzel]

in reply to: to those who had OD-did it help you a lot? Glad you did it? #1173220

Yes, I had orbital decompression on the right eye only (I had the rare condition of having proptosis in the right eye only) performed at the Jules Stein Eye Center at UCLA in Westwood. The surgeon was Robert Goldberg, Chief of the Orbital and Ophthalmic Plastic Surgery Division, did the surgery. He did an amazing job. From what I hear, he’s one of the top surgeons in the world for this particular surgery. I am now eleven years past the surgery and my eyes look great.
He followed up with two smaller surgeries to get the right eyelid to close as much as it possibly could. He is precise and exacting. The results are phenomenal.
I have to say that, since my left eye remained unchanged, it must have been an even greater challenge, since he had to get the right eye as close to its original condition as possible or risk me walking around with mis-matched eyes. I think it’s a credit to his professionalism that people are still shocked when I tell them that my right eye used to look like Marty Feldman’s.
I hope you have the success I have had with this. It gave me back my confidence in meeting people.

[rapunzel]

in reply to: 27 year old from Pa overwhelmed with Graves #1171165

Sounds like you and your team of medical experts are still in the “let’s figure out which combination of treatments is going to work best on this patient” phase . Many of us go through this phase. Sorry you are experiencing so much discomfort. Biochemically, it’s not likely that you are finding much peace of mind right now.

Hold onto this thought: It gets better. Although it might take a while to find the right treatments, the doctors have effective treatments that will improve your life. Right now, your thyroid is producing hormones that affect your emotions and thought. It’s okay to rely on others to help you. Treat yourself very gently. Try not to “believe” your own fears. It gets better. It gets better. It gets better.

Blessings,
Rapunzel

[rapunzel]

in reply to: weird eye sensations should I worry? #1172023

You have a right to ask to be seen if you feel your condition might have worsened. If he says no, he says no. Ask him when he reasonably expects to see you again. Ask him what symptoms/signs (and what level of severity) would indicate that you should call him sooner than that. He might not respond to your anxiety (shame on him) but he should respond to your specific questions for clear guidelines on how to be proactive about your own medical care.

If he won’t answer reasonable questions, consider finding a doctor who will.

Information beats fear every time. A total lack of information can be terrifying. Get information from your doctor. The last thing a Graves patient needs is more stress.

[rapunzel]

in reply to: how long till brain is back? #1172005

My heart goes out to you. Our stories are very, very similar. What I can report from farther along the road is that, while my brain is very different than it was before Graves, I have learned how to use my now-different brain in ways that accomplish what I want to accomplish. If anything, being incapable of the kind of detailed, highly-systemized organization I used to produce so easily, my thinking has become more insightful and creative. It’s not the brain I had before, but it’s still powerful and can do anything I ask it to.
It needs more sleep than it did. It demands better nutrition than it did. It simply refuses to produce if I haven’t been taking care of myself. However, that is certainly partly due to the fact that I’m 13 years older than I was when I came down with Graves!

It gets better. It gets easier, as my friend says, “little by slowly.”

Some concrete things I did to restore my mental powers:
– Gave up TV. Entirely. Got rid of the damn thing.
– Bought a book of NY Times hardest crossword puzzles and worked on it every night.
– Read, read, read, the most interesting books I could find.
– Studied algebra, probability, and logic, using GRE practice material.
– Researched everything I could find on Graves, including material in my local University’s medical library. This required looking up a lot of Latin and Greek roots of words, and looking up “beginner” explanations of some medical terms.
– Took notice of how I solved problems in new ways and worked to get good at those new problem-solving skills and use them.

And, (drum roll, please…) if you play a musical instrument — Play it as much as you possibly can!!! If you don’t, consider learning one.

It gets better. It gets easier. If you do a little each day, and if you miss a day, forgive yourself immediately and do some more the next day, you find results that will amaze you before you are half-way done.

I wish you hope and lots of stick-to-it-ness. You CAN beat this. You will find strengths and “intelligences” that you didn’t even know you had.

Blessings,
Rapunzel

[rapunzel]

in reply to: remission feels horrible #1172099

Hair loss: I’ve had good results from taking a multivitamin called “Hair, skin and Nails” — several vitamin companies make a formula like this — and taking biotin and vitamin D.

Of course you should ask your doctor about taking even over-the-counter vitamins, but if it’s okay, you might get some relief, as I did.

Three of my sisters have hair loss without Graves, and these supplements help them, too.

[rapunzel]

in reply to: Curiousity… #1172049

My pretibial myedema is much milder than yours. A suggestion from an endo has helped a lot. After I shower, I don’t dry off my legs below the knee. I slather lotion on them and walk around bare-legged until the lotion is absorbed. I don’t know why this helps, but it cuts down the itching by 80%! Sometimes I get some red patches and some itching, but overall I have had great improvement with this. As I say, though, my condition is milder than yours, but perhaps you might find a little relief from the worst of the itching. You might find that you would want to repeat the treatment during the day.
Best to you in finding a treatment that works for you!

[rapunzel]

in reply to: First day on thyroid medication…any advice? #1062296

Many thanks — didn’t know about the 1/2 hour wait. Helpful 2 know!

[rapunzel]

in reply to: Hello, Warriors. Rapunzel is back: Hair loss? #1062330

Suz01: My hair loss began long before my Graves because women on both my mother’s and father’s side of the family experience it. Lucky me, I got the gene, too. I’ve tried Rogaine for that kind of hair loss, and it seemed to slow down the hair loss, but not increase hair growth.
There’s my experience, which doesn’t include med school. It’s certainly worth asking your medical professionals about — research and pharmaceuticals are changing all the time, and I’ll bet they know more than I do!

[rapunzel]

in reply to: PHOTOPHOBIA BIG TIME-any help out there? #1062467

Bobbi — You’ve just given me a solution to a problem I’ve tried to solve for years! I love to ride my bike, but the wind blows dust into my eyes, which you know is a problem for us TED gals. I looked at those Fitovers, and they have "side windows", so I can reduce the wind/dust factor without impairing my peripheral vision. Yay!!!

Thank you SO MUCH for the information!

[rapunzel]

in reply to: PHOTOPHOBIA BIG TIME-any help out there? #1062465

When my TED was at its worst, this was quite painful. After things settled down, it remains a problem, though not so bad. I do not believe that you can change this symptom of TED by the method you describe, partly because it’s not a muscle that can be trained. My solution has been to wear the darkest sunglasses I can, wear hats (sometimes a baseball cap with a large bill and sunglasses when driving), and find places to sit where light (sun or man-made) isn’t in my eyes.

It takes a little effort to establish habits, but after that you don’t even notice you’re making adjustments to accommodate your photophobia — it’s just the way you live.

I send you blessings and peace and hope for a rapid recovery.
Rapunzel

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