[Marpo]

in reply to: BLOODWORK when to do it. IMPORTANT #1071345

I never knew this . I would think it would also be a good idea to be hydrated before getting an IV for surgery put in also. But since you can’t have anything after midnight, I would guess it would be a good idea to drink plenty of water the day before. If there is any other suggestions for when you will need an IV put in , that would be appreciated. I am sure I am not the only one that hates the thought of an IV.

[Marpo]

in reply to: Ponder this….. #1071787

I invited 3 families that live in apartments to plant a garden next to mine. Now I will have to go out there every day because I have people back there working in their garden. My husband made the garden in the back acre, 1/2 block from the house. Is that a reason to walk or not?
Sometimes we have to make a reason to go walk or just get out.

[Marpo]

in reply to: Eye Muscle Surgery #1071834

I had upper muscle retraction eye surgery last year on my right eye. Last January I had lower retraction on both eyes. It sounds worse then it is. They told me I would have to be awake for part of the surgery to move my eyes around. This was to make sure they had it right. I was in a panic about it. I did not want to be awake for any of it. I was asleep for the decompression. They said they would give me something that would make me forget the whole thing. That I would not even know what happen.

For the first one they woke me up. Told me to move my eyes and because I was doing so well I was not put back to sleep as they finished. I didn’t feel much except a little pulling , like when you rub your eye. I only saw fog. I had no pain at this time. The 2nd time I don’t remember waking up at all. I remembered the first one because I did not go back to sleep. I don’t remember the 2nd one because I did go back to sleep. I was talking to the doctor and the next thing I knew I had brain freeze and was talking to the nurse. I had an ice bag on my eyes and didn’t know it. I had pain meds and only took them for a few day’s. I hope this helps.

You will have black eyes and swelling for awhile. My eyes are still healing but look pretty normal.

[Marpo]

in reply to: Lack of Support #1071884

RNFQueen

I am also in Colorado. I had my husband read your post. He said he will gladly speak to your husband about Graves’ Disease. So many men and women seem to have this problem. I am one of the lucky one’s that has a husband that wants to learn all he can about this disease. Some times it helps to have the spouse’s talk to each other and compare notes. Drop me a line

[Marpo]

in reply to: Decompression Surgery April 15th #1072150

I just wanted to add my two cents worth. The decompression sounds worse then it really is. It is understandable to be afraid of it. After all it is your eye’s . I had both of my eye’s done at the same time. The pain was not as bad as I thought it would be. But, there is pain after. I went in the morning and was home that evening. My eye’s were so swollen I could not see. I did need help going to the bathroom. I was still a little groggy the next day. Every day was better. I had a swollen face and black eye’s for almost two weeks. It did get rid of the bulgy eye’s and my double vision. I have since had upper lid retraction on one eye and lower lid retraction on both eye’s.

Remember we are all different. Some of us need more surgery and some don’t. You will be glad you had it done. I wish you luck. You will be fine.

[Marpo]

in reply to: Family Education Material #1072274

I am so glad you and your daughter liked the book. The cartoons really helped my grandkids understand me. The cartoons were of things that I went through or people I know. Kids just need a simple explanation and I could not find one in all the books I looked at.

Thank you for your kind words. If it helped one child I am happy. ” title=”Very Happy” />

[Marpo]

in reply to: POLL: what positive things have come about in your life… #1072374

I actually wrote a list a while back called "What has Graves’ ever done for me?" I have 26 items but these are a few of my favorites.
1. I have learned patience
2. I have learned things about myself I didn’t know
3. I have found out I am a strong person
4. I have met people I would never have met if not for Graves’
5. I have learned Graves’ is not the end of the world
6. I have learned to appreciate the smallest things
7. I have learned there are others worse off then I am
8. I have learned to accept myself for who I am
9. I have learned to accept my appearance
10. I have learned to not judge people by how they look
11. I will survive

[Marpo]

in reply to: Could this be EYE DISEASE????? #1072436

I agree. When ever I would go in for an eye exam I would tell the person giving the exam that I had Graves’ Disease. Depending where you go you may have a different person examining your eyes. I know they read your chart but it does not hurt to also mention it. The person that did my exam the day they told me I had Thyroid Eye Disease said she was glad I mentioned it because then she started asking me questions she might not have asked even though she saw I had Graves’. She said that it is a good thing to mention your Graves’ and if your eyes are watery or itchy at an exam. Not everybody that has Graves’ Disease gets the Thyroid Eye Disease.

[Marpo]

in reply to: Eye surgery #1072608

You are not alone here. I get real bad panic attacks before any surgery. This was before I had Graves’ or TED. I have had 5 eye surgeries. No where near Dianne’s number. I did what she advised you to do. I wrote my will and a letter to my husband children and grandchildren. It seems a bit much, but it made me feel more in control.

I had decompression on both eye’s and was put to sleep for it. I don’t remember anything about it. I don’t even remember going home. I had the surgery in the morning and was home be evening. For my upper and lower eye lid retraction’s they said I would be awake for part of it . They would need to wake me up so I could move my eye’s. I was really in a panic over that. As it turned out everything went pretty smooth. They did wake me up but everything was foggy. They told me to look side to side and I felt a little pull. Like when you rub your eye. Also felt like I had a little something like dust in my eye or sand. No pain. I stayed awake , went to recovery for a short while and went home.

They pain was not very bad. I did have some nice black eye’s and swelling each time. It was not as bad as I thought it would be. I did have real good doctor’s that have a sense of humor and are easy to talk to. That helps. Good luck with your eye surgery. You will feel better after.

[Marpo]

in reply to: Bilateral Orbital Decompression #1072520

I think Dianne would be the person to talk to. She has a website with pictures of other people that had the eye surgery. Because of her I made a DVD of my facial changes with Graves’ and TED and how I looked the day’s after my five eye surgeries till now. My eye’s are now about normal. If for no other reason it helped me see what my family was seeing all these years. I think it is a good idea to keep some sort of record.

[Marpo]

in reply to: Feeling good :-) #1073068

Hopefully this feeling good will catch on. Yesterday My granddaughter and I played dress up and took pictures. I have not been comfortable in front of a camera for years. We were laughing so hard my ribs hurt. I can’t even remember the last time I had a good laugh. With Graves’ Disease it seems we tend to forget how good it feels to just laugh and take a picture without thinking about it. These are just little things to everybody …..but not to us.

DId I mention this was my 18 year old granddaughter? There is Hope for us yet.

[Marpo]

in reply to: Family Education Material #1073152

I made a coloring book for my young grandkids and a friend of mine in Ireland kids. I will send you a copy in the mail Nancy ” title=”Very Happy” />

[Marpo]

in reply to: Feeling good :-) #1073066

If nothing else we learn to appreciate a day of feeling good. We appreciate the little things. As tired as I was getting back from training I sat down with a nice cold tea and put my feet up and I was content. It was an AHHHHH moment that does not come enough.

[Marpo]

in reply to: Support Group Leadership Training Feb 26-28 #1074117

Could you tell me what airport I would have to book my flight to.
Elaine

[Marpo]

in reply to: I’d like to start a support group in Alameda County, Calif. #1074613

Nancy will there be a training session soon for support leaders? I had just joined when you had the last one. I am sure others support leaders are interested also.

Elaine

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