[Marpo]

in reply to: Congratulations Nancy and Ski #1067519

Congratulations to both of you. Meeting you both this past year has made me want to continue the fight to help others understand what GD is all about. Of all the other places to ask questions about GD or TED, this one is the best. I think you two are at the top of the list for the most caring people. You give so much of your time and self. It is wonderful that you are recognized and told how caring we all think you are and how much your being here has helped others.

Thank you for being great teachers and examples to us all.

[Marpo]

in reply to: New to here, Graves, and life #1067646

I just got back last night from the conference. There was so much to learn in a short time. I am sure there will be some kind of information here for those that were not there. But, it will not be the same as being there. Amazing people….doctors, supporters, family, Graves’ and TED people and of course the people that put it all together. No, there is still no cure but with the researchers and people like Steve and Kathleen I am sure it will come soon.

A big "Thank You" to Peter, Nancy, Steve, Kathleen all the Doctors and supporters and all the speakers. I learned so much at the conference. Antonio Richardson a great Hip-Hop artist who was there and has Graves’ Disease is going to really get the word out for us and I am proud to call him my friend. I was so glad to meet all of you special people. Congratulations to our very own Ski for being the "Volunteer of the Year". You deserved it and more for all you do. Congratulations to all that got awards. Thank you Kathleen and Steve for the beautiful bracelet I was awarded and to the foundation for the "Star Fish" Medallion my husband and I received.

I miss you all, already, and look forward to seeing you all soon. This is a wonderful foundation to belong to. I really believe this foundation and supporters "WILL" find a cure one day soon. In the mean time the information the foundation and the volunteers give us will help us all while we wait.

[Marpo]

in reply to: Driving? Directions to the conference #1067867

I googled Earth map and there is a gas station across from the first entrance to the Balantyne. There are a few stores nearby but not many. Also a few restaurants near by. Not much for shopping as far as I can see. You are right Nancy, better to do your shopping else where.

[Marpo]

in reply to: Debating Upcoming Conference… #1067887

Even after surgery, your journey with Graves’ Disease will not be over. I had RAI not the surgery, but I know a few people who had the surgery. Some are doing well some not so well. You will not just wake up from surgery and have your old world back. It will take time and there is still a lot you can learn. I recommend you go to this conference. Being that you want to have a baby, I think it is important that you go and learn more about what to expect after your surgery. I am sure others here will tell you the same thing.

Good luck with your surgery and to a speedy recovery

[Marpo]

in reply to: Conference Update #1067995

I would add these things to your list Nancy:

A camera and plenty of film. You may not be able to find the film you need. If you use a digital bring an extra memory card.

A tote bag to put in all that extra information you will get. Easier then a brief case you have to keep opening and that may not have a shoulder strap.

A new address book for the address labels or for new friends to write in.

A pair of gloves. I was soooo glad I took mine to NC in February

An umbrella. I wish I had one the last time I was there.

Slippers or crocs . To use when you have to run down the hall for a minute.

Medication. You would be surprised how many people forget this.

A map of Charlotte and the area will also be helpful if you plan to do some sightseeing.

Be sure to leave the phone number and name of where you are staying with someone at home. Also your flights or route you are taking. I also leave information with my daughter where important papers are and my doctors number. Also special instructions. You never know what can happen on a trip. Better to be safe then sorry.

[Marpo]

in reply to: Car pool from Denver #1068139

Thank you both for your kind words. We are looking forward to the drive. We are looking at two different routes. One across Kansas to St. Louis and one across Oklahoma to Nashville.

[Marpo]

in reply to: I could use some help… #1068130

Ski and mama are both right and have given good advice. I was a photographer and I have used all these things to take a good picture of people. I always would suggest the good side. Half closed eyes sometimes work. Sunglass’s do wonders. The kiss is the best one. I know how you feel about pictures . I hardly ever would take a picture after I got TED. I am glad I did take some as I put together a DVD with my Journey with TED. Now that my eyes are normal I can look at this DVD and really appreciate how I look now. Not a movie star, but normal.

It really is a good idea to educate yourself and your family about Graves’ Disease and all the symptoms. Some will understand and some will never understand. Take care of you and don’t worry what others think. This is not being a brat or selfish. take care.

[Marpo]

in reply to: Is Doing nothing an option? #1068145

I was where you are at one point years ago. I am very bad with taking pills and surgery is something I have to be dragged to. So that did just leave me with RAI. I just had to take one large pill and rest up for a few days after. I never did feel sick , turn green and did not travel that week end.

I do take a pill everyday and will for the rest of my life. I take my pill before bed as part of my nightly routine. I brush my teeth then take a pill since the glass of water is already in my hand , I am half way there. My daughter use to put a big sign on the wall "TAKE YOUR PILL". It worked. Oh, I don’t need the sign any more.

[Marpo]

in reply to: TED – will I have my sight again? #1068329

I saw your post and had to answer right away. I felt like you awhile back. I know that lost helpless feeling. I know how it feels to worry about never seeing right again. You are not alone, yet is is a very lonely place to be. Nobody except those who have been there can know how you are feeling right now.

Yes, you can see normal again. Yes, your eyes can look normal again. Yes, the watery itchy eyes can get better. Yes, you can go out in public again with out being embarrassed about your eyes.

Those of us with TED, like Graves’ Disease can have different degrees of TED. Some will have eyes that will go back to normal after they run the course. Others like me, need to have a few eye surgeries to get the eyes back. I wish I knew back when it started what to expect. When I had double vision, I tried to hide it from everyone by closing one eye. Like they didn’t notice. After decompression surgery , no more double vision. By then my eyes had bulged out so much, I needed other surgery to get rid of the extra skin from the bulging. Some do not need much eye surgery, some need more then a few. It could take a year or more. I just want you to know that there are some of us here on NGDF that will tell you we have our eyes back. Check out the TED support group website http://thyroideyedisease.weebly.com/ Ajay has a very good sight with a lot of information. Dianne also has a very good sight about TED. http://home.rmci.net/deecee/

I truly hope this helps you feel better. Have faith, it can get better. Take very good care of your eyes. Rest them, keep them lubricated, use cool damp cloths to sooth them. There are other things you can do to make them feel better. Nancy can tell you a lot about that too. Take care.

[Marpo]

in reply to: Just a small frustration #1068371

There are many good doctors, nurses and lab people out there. It just seems like we find the ones that do not want to listen, do not think we will understand, do not want to explain, do not seem to spend enough time talking to us or just think we are complainers. I truly believe that many of the ones that have treated us badly may treat us better if we speak out. There will always be the ones that will not get it. I can just see some of you nodding yes. There needs to be a wake up call for all of us. Patients and those in the medical field. We as patients don’t question as much as we should and some of us don’t speak up when we are not comfortable or satisfied with the service we get. Maybe we are conditioned that way.

On the other hand maybe the people in the medical field are just use to doing their job a certain way and do not expect to be questioned about it. Maybe they believe they are doing us a favor and helping us. But, as we all know it is not a favor and we pay to be helped. It is their job to do a good job and our job to make sure we have the best care. Simple as that. I use to blame the doctor, but I have grown up some (if not up then out at least). We are adults and responsible for getting the best care we can. There are many reasons to find a new doctor. The doctor may be great but you and he just do not get along. Then move on. What ever the reason. You will not get better if there is conflict between you and the medical people.

[Marpo]

in reply to: Just a small frustration #1068366

I felt like I was a little kid asking can I do something. When I got a new doctor I decided to go in with confidence. I told myself that I was paying these people and they needed my business and a good review from me. If I was to go have my hair done and wanted blond and they made it brown would I just take it…..NO, NO and NO. If I am not satisfied with the service I will tell them so. We or our insurance pay good money for what ever service the nurse, doctor or lab give us. I found out that I get more respect from them when I respect myself and demand to be treated as a good customer. We are a good customer as we seem to live at their office.

Most of these people will give you more respect when you tell them you expect it. Like any other business that gives you bad service ….you have to let them know You are not happy with their service.

Saying all that ….Why is it that no matter how old we are, going to the doctor or a school makes us feel like a naughty kid……

[Marpo]

in reply to: VIRTUAL COFFEE BREAK #1068608

127……Yes, One Hundred and Twenty Seven. That is how many GD people were at the "Virtual Coffee Break"

People listen if I can do this and get this many GD people together to smile for an hour or two, what else can we accomplish together. We all read the post her and there are so many that feel alone and not understood. They ask for help and a shoulder to cry on and someone to listen to them vent. I know I come here to be with others like me.

Yes we need good medical help, family and friends that understand, to feel better about ourselves and to know we are not alone in this war with GD. How hard is it to have a short coffee break and to unite for 15 minutes, a half hour or an hour.

Good news we now have a chat room at http://meebo.com/ sign up and ask to be a friend to marpolane on the Coffee Break. It is very new and may take awhile for the word to get around but it is there for you to chat to other people with GD. Enjoy and a toast to all of you. "Down with Graves" ‘ ” title=”Very Happy” />

[Marpo]

in reply to: VIRTUAL COFFEE BREAK #1068607

I am so excited. I feel like a kid waiting for Christmas morning. The response and positive emails I have received is unexplainable . It has been suggested from a lady in my support group that we have a chat room for our Saturday "Coffee Break". I am going to look into it. There are so many coming that are alone. I have been told how excited they were to get something besides bills in the mail. I have two friends having coffee and going to talk on the phone. One is in Georgia and one in Ohio. A young lady in Ireland is inviting people over for coffee. They will be having coffee at 10:00 AM their time and 4:00Pm my time.

Another nice thing that came of this is from the people we are getting the coffee from. I have to thank my husband Marty, and Chalene, and Daniel from Organo Gold Healthy Coffee. They have donated coffee, tea, and latte. They have also helped stuff and address envelopes to send out. They have also helped pay the postage, printing, envelopes and paper. I also want to Thank members of our support group for all their help. They do not want to be mentioned, as they don’t think they did anything.

It is not to late to join the coffee break. We are having it every Saturday morning for the next five weeks. But, at this rate we may just keep it going. Please let me know what you think. Also what about the chat room? ” title=”Very Happy” />

[Marpo]

in reply to: Thats when you know how good this site really is #1069833

I agree that laughter is the key. Being carefree and laughing at yourself really does help. If I forget things (brain fog), if I am short tempered, sleep a lot or just don’t act like I should, I blame it on being bratty. I laugh it off and my family is learning how to laugh it off also. We try not to get mad about little things.

Watch kids. They get mad at each other and forget about it a minute later. Like it never happen. We can’t stay mad at ourself for something we can’t always control. It would also be nice if other’s didn’t stay mad at us for the same reason. I want to share with all of you what we will be doing at our end of Summer Graves’ Disease Picnic

Our Graves’ Disease Support Group is not having a regular type meeting next month. Since we are having a pot luck picnic we will also have hula hoop’s, play horse shoe’s, and other kid games. This way the whole family will play together…and yes laugh together again. We are also having a drawing contest. Everyone has to draw a face of Graves’ Disease. Everyone get’s to vote for the best one. Everyone will get their very own box of crayons to take home.

[Marpo]

in reply to: Venting…DENIAL AGAIN! #1071165

It helps to have your work history for the past ten years and also your medical history of the past ten years. I had down every job I had and when I quit I had notations of why. Like the pain in my legs, not being able to concentrate, anxiety, tiredness and not being able to drive. Have every paper you can get your hands on that tells of your disease and your symptoms.

It is possible to get this. My doctor at the time did not think I was ill enough for disability. That did not matter, as it is the Social Security Doctors that helps to decide. It is very important to have as much documentation as you can get. It is also a good idea to go to Social Service and apply for Medicaid. They can probably help you sooner and may get the ball rolling for you. Good Luck

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