[Sue_Conard]

in reply to: Memory Loss #1069972

OMGosh Amberlynn…you UNDERSTAND where I’m coming from. I’ve had dbl. vision since December ’08, and my family, the other day, said for me to stop "making excuses" for the fact I can’t see what a "normal" person can see. I’ve spilled coffee on the counter top (missing the cup), burned my hands from pouring hot water on my hands (missing the cup) for hot cocoa (not to mention the TREMORS and WHERE DID I PUT THE COCOA?), but my dear family says "stop making excuses"…WHAT!! I’m exhausted too, physically & mentally from this disease, from my own family not understanding or interested in what I’m going through!! I don’t know what "normal" is anymore for me. Because I get up every morning and still able to work and bring an income into my family, they think I’m as normal as they are and I’m NOT!!

[Sue_Conard]

in reply to: NAME THOSE FOODS…The Good/The Bad/And The Maybe #1070178

Ski…THANK U so much for claryifying the sea salt issue for me!! Labels can be soooooooo confusing too and this is GREAT information!! We appreciate you!!

[Sue_Conard]

in reply to: NAME THOSE FOODS…The Good/The Bad/And The Maybe #1070176

Thank U so much for your recommendation…I’ve taken a close look at a lot of labels and most of them have sea salt which is also not recommended for GD patients. Along with dairy not being recommended for GD patients, I’m a estrogen-receptive breast cancer survivor so it not recommended that I have soy products either. I’ll ck. out the almond milk and appreciate your recommendations!! I’m finding it difficult to find a mean with nutrition for my health…I do take calcium, Vit D, multi-vit supplements myself too.

[Sue_Conard]

in reply to: double vision #1070085

Just so you know, I almost went out of work too on a short leave of absence; however, invested in the prism glasses and it’s allowed me the freedom of driving safely back and forth to work. My vision insurance PAID everything; however, I’ve not had the prism replaced yet and my vision is still changing. The GD dr. just tells me I’m "unstable" (imagine THAT statement… )…so I sit and wait for the day I can be "stable" again!!

[Sue_Conard]

in reply to: double vision #1070083

Hello Bobbi!! The TED has been the MOST FRUSTRATING part for me. I enjoy beading/scrapbooking & that’s been taken away from me unless I use a magnifying glass and bright light. Last August I wrecked my husband’s car b/c it was early on and I didn’t understand what was going on until I started having, what I describe, as "blackness". It was like someone pulled a shade down over my one eye and that’s when I ended up going for 2 rounds of IV infusions of Solumedrol and ended up in radiation. I was very afraid of losing my vision and opted for the treatment. Since my radiation treatment in Feb. 09, my vision has been coming and going, quite like yours is now. I was blessed to find an opthamologist in my area that studies/researches GD and he keeps me on a very close watch & see monthly appt. where he measures my eyes. Best of luck with your choices…I found with GD, it’s very individual and you just never know when it’s going to rear it’s ugly head with symptoms. I had breast cancer 4 yrs. ago and told my Endo that I would take THAT DISEASE back tomorrow with the chemotherapy, etc. over GD. He told me it was a very strong statement, but that’s the way I FEEL, EVERY DAY.

[Sue_Conard]

in reply to: Hyper / Exercise / Joint Pain ? #1070157

Back again…I’ve been on Tapazole since last October, on/off prednisone and had 2 IV Infusions on Solumedrol and radiation b/c I also have the eye disease. I wish that there was some explanation about muscle tissue literally being stripped away from your body with GD on the internet. Ski – If you have a link on the internet that you could send me to better educate me with this explanation, I’d appreciate it. I too would like to read the scientific explanation since I’m currently studying to be a nurse. Thanks a ton!!

[Sue_Conard]

in reply to: no dairy products? #1070109

Somehow ewmb I’m not surprised by anything this disease causes, including lactose intolerance. Great information, THANK YOU!! Sue

[Sue_Conard]

in reply to: NAME THOSE FOODS…The Good/The Bad/And The Maybe #1070173

Hello "sick of graves" (ME TOO!) I truly appreciate all your input and I just had a Trader Joes open in my area a month ago….YEAH!! Come to think of it, I bought "goats milk" there too, but only used it to make homemade soap for my family, so I’m going there THIS WEEKEND and ck. out the labels!! I’m so happy your responded, THANK YOU!! I don’t want to get too crazy with my diet over GD, but there’s enough "hidden" items in today’s foods that anything I can personally do to help myself, I’m going to do it!!

[Sue_Conard]

in reply to: no dairy products? #1070107

THANK YOU KATHERINE!! I never thought about rice or almond milk!! I’ll take a look at the label on both and report back what I find!! I appreciate your input. ” title=”Razz” /> Sue

[Sue_Conard]

in reply to: Thank God for GDF (new to GD and GDF) #1070266

Hello Lakeview! I feel your pain. I’ve had double vision since last August (off & on until October). Since December I’ve had 2 IV infusions of Solumedrol treatment & Radiation, only to continue having the double vision. The reason for the Solumedrol & Radiation is because my symptoms were overwhelming with pain in my head (temples) and darkness (like someone pulled a shade over my one eye, I believe it was pressure on the optic nerve). With this said, I hope that you will seek an eye specialist in your area that deals with GD ophthalmology. I’ve been blessed, in that, I have a one in my area that works with my Endo to treat me. I call him my "monthly"…I’m too old for a monthly except the eye specialist!! Every month he measures my eyes for changes and watches my symptoms very closely, then works with my Endo on treatment. My eye specialist has been researching GD for over 20 yrs. and I feel very blessed to have found him in my area. Until I go into remission, he doesn’t see the need to do surgery to realign my eyes. It’s been a real struggle for me to have the eye disease because I enjoy beading and scrapbooking. This disease has taken away my sanity & my hobbies. It’s a struggle without a large light & magnifying glass to enjoy what I used to do. Good luck on your eyes…I MISS MY PERFECT EYESIGHT!!!

[Sue_Conard]

in reply to: no dairy products? #1070105

I heard that same comment on this site Emily, so I was looking at Soy milk to put on my cereal in the morning and when reading the label, SOY MILK HAS SEA SALT and my understanding is that we shouldn’t have Sea Salt either. When answering Emily’s question can anyone tell me what they use to put on cereal in the mornings or a brand of Soy Milk that doesn’t contain Sea Salt?? THANKS SO MUCH…I’m a cereal girl and ready to give up or cut back on dairy products to help myself and this could help Emly too !! ” title=”Very Happy” />

[Sue_Conard]

in reply to: NAME THOSE FOODS…The Good/The Bad/And The Maybe #1070171

I have a QUESTION for anyone that can help me on NAMING THOSE FOODS. I understand that GD patients shouldn’t have dairy products; however, I was looking at Soy milk to put on my cereal in the morning and when reading the label, SOY MILK HAS SEA SALT and my understanding is that we shouldn’t have Sea Salt either. Can anyone tell me what they use to put on cereal in the mornings or a brand of Soy Milk that doesn’t contain Sea Salt?? THANKS SO MUCH…I’m a cereal girl and ready to give up or cut back on dairy products to help myself. Sue

[Sue_Conard]

in reply to: Thank God for GDF (new to GD and GDF) #1070264

Justin: You’re in our thoughts and prayers. Release the butterfly (Christi) and if you’re meant to be together, she will recharge her batteries while you’re away and come back. Sometimes all we need is space. I know that even after 30 yrs. of marriage, I need my space from time to time. I never really understood how married couples took separate vacations until this year when I went to CA to see our son alone and it was really nice to be away and have that time to think. I will admit to you that I believe now, looking back on my marriage, that I’ve had Graves a lot longer than this past year (when diagnosed) and it caused a lot of stress in my marriage around 15 yrs. ago. Without any details, I look back at what transpired and know in my heart, it was Graves. I have faith that things will turn around for you two. Take care of YOURSELF FIRST and everything else will fall into place. Please let us know how you feel when you return from your week away and how things are going for the two of you.

[Sue_Conard]

in reply to: Hyper / Exercise / Joint Pain ? #1070150

OH MY GOSH LACIE!! That’s WHY my legs look cheesy, right? I looked at myself in the mirror the other day and couldn’t believe how tone I used to be and my legs looked like cottage cheese. So you’re saying that my muscles are "wasting away" into fat?? Do you think I’ll get the muscle back once I get out of "hyper"ness and start exercising more or is this something that can be permanent?? I don’t know much about it…THANKS for anything you can offer me.

[Sue_Conard]

in reply to: Hyper / Exercise / Joint Pain ? #1070148

Thanks Susan for responding!! I have an Endo appt. coming up early July and will consult him. I appreciate your advice. One thing my Endo did tell me is that he didn’t want me to become lethargic from this disease!! I do have to say though, I took a motrin last night after reading Cathy’s post and it did help my symptoms this morning…I didn’t feel as rough!! Thanks ALL for helping me through this phase!! Sue

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