[ewmb]

#1068824

Kit,
I don’t know how you can get benefits but wanted to say this is a great place to find out. I am sorry that you’ve had such a time. What do you do in the schools? I gave up on teaching earlier in my life when I got fibromyalgia as I never knew how I would feel from day to day. It can be hard to stop doing what you love.

Hope you get some help soon.

ewmb

[kit1960]

#1068825

ewmb,

Thanks for your reply. I work in a clerical position in an elementary school. I truly love my job, especially working with the children and would be so sad to give it up. However, it is becoming a daily struggle just to function with Graves’ Disease. I never knew a thyroid condition could be so life altering. Hopefully, a few other sufferers on this site can assist me in navigating the SSI process. I hope all works out for you too.

Kit

[ewmb]

#1068826

Kit,
I know from working in the schools that they will miss you terribly if you have to go. With the economy the way it is I’m sure you need your job but maybe they would be willing to work with you on scheduling or fewer hours to keep you so you could have more flexibility with your health until it gets under control. Have you used the search engine here to look for past posts on benefits, being out of work or phrases like that? I know lots of people have written on it in the past.

ewmb

[kit1960]

#1019048

I was diagnosed with Graves’ Disease in October 2006. At the time my TSH level was 0.01. After undergoing a Thyroid Uptake and Scan, using RAI-123, my Endocrinologist’s recommedation was Thyroid Oblation, using RAI-131. The oblation was performed in December 2006. After several blood tests to monitor my Free T-3/FreeT-4 levels, as well as adjustments to my daily dosage of Synthroid (I’m currently at 175 mcg/day of Synthroid), my Graves’ Disease is still not under control. It is becoming increasingly difficult to function on a daily basis. I’m employed by my local school district, as a 10-month employee, which affords me with the summer months off from work. I’m due to return to work on September 1. However, the way I’ve been feeling, I’m at a loss as to how I’m going to return to work. This disease has affected the remainder of my body with the following: my jaw joints need to be replaced due to a breakdown of bone (I may not be a viable candidate for this type of surgery, as the prosthetic joints are attached, or "screwed into", the jaw bone); fermoral nerve entrapment of my left hip and and upper leg, leading to permanent numbness; periformis syndrome of my right lower back; hand tremors of both hands; extreme fatigue; and twitching/tearing of my right eye. I’ve done some research via the Internet to learn more about Social Security Disability Benefits qualification for suffers of Graves’ Disease but am finding it to be a bit of a "gray area". While my mind says "don’t give up", my body is telling me otherwise. By the way, I’m a 48 year old female. While my intention is to keep fighting, I would appreciate any feedback that any of my fellow sufferers of this disease can provide me with regard to Social Security Disability Benefits. Thank you.

[kit1960]

#1068827

Hi ewmb — Thanks for the info. I will try the search engine. I’ve only been on this site for a few hours and already feel like I’ve made some friends that truly understand what it’s like to live with this disease. Please stay in touch and let me know how you are doing. Thanks again for your advice.

Kit

[kit1960]

#1068828

Hi again ewmb — In re-reading your reply to me, I noticed that you reside in North Carolina. It’s truly funny how things work out. I just visited the Charlotte area last week (the week of August 3, 2009) to tour a technical school for my adult son. We fell in love with the area and did not want to return to New York, where we currently reside. We are considering relocating to the Charlotte area in the near future. We stayed at the Doubletree Suites in the Southpark section of Charlotte. Would you happen to know of the availability of townhome communities and employment opportunities in and around that area? One of my concerns in relocating was the fact that I have Graves’ Disease and worried about finding the proper doctors to treat this disorder. Finding out there’s a support group in Charlotte is like a gift from God! Any information you can send me would be greatly appreciated. Thank you so much!

Kit

[ewmb]

#1068829

Kit,
I grew up in Charlotte and my parents still live in the area. I don’t know about employment opportunities but the Charlotte Mecklenburg School system is the largest in the state. Charlotte is one of the big banking centers too. Bank of America started out as North Carolina National Bank years ago. Wachovia was here too. Don’t know how that’s all going now. The newspaper in Charlotte that would have want ads and housing ads would be the Charlotte Observer. I’m sure they are on line. When we were moving back to NC from the west coast we used things like the REMAX home finder on line to see about what was available. I grew up on the other side of the city near UNC-Charlotte, the university. My dad was a professor there. The GDF conference will be in Charlotte in October. You can find out more information about that on the home page. Click on the top green section here.

Where do you live in NY? My sister in law is from the Astoria and my step- mother in law is from upstate. My brother and his family live in the city now.

How are you feeling today? There are several large hospitals in the Charlotte area. I don’t know about Graves endos but you could probably search on some of the endocrinology society web sites. I live closest to UNC-Chapel Hill area. My endo is head of the endocrinology dept. there at the hospital. I have to go about 1.5 hours to get to him. There are others that are a bit closer I’m sure. We live out in the country. I knew that he treated Graves patients so I tried him. He’s not perfect but I have become so much more informed from this BB that I ask a lot of questions. I just had RAI in May and am still waiting for a big change. There are lots of transplants from up north here in the Raleigh area. What does your son want to study? My oldest is headed off to college next week.

ewmb

[npatterson]

#1068830

Dear Kit,

Are your doctors telling you that jaw joint breakdown, femoral nerve entrapment of your left hip and upper leg-and its’ atendant numbness, and periformis syndrome in your lower back are Graves’ related? Certainly your tremors,fatigue and eye involvement are likely to be related to your Graves’.

As far as disability is concerned, there are people with Graves’ who are on disability, but the disabilities are usually horribly severe. Would a different approach be to look at it from an orthopedic perspective?

Have you talked to HR at your job? There are many reasonable accomodations that can be made. What things might help you? Different computer screen, different ergonomic chair, somewhat more flexible hours, do some work from home (like paperwork that doesn’t involve interaction with the students)? If you make a list of the things that are difficult down one side of the page, you might be able to make a list of corresponding possible solutions down the other side.

Take care,

Lastly, a reminder that the Conference will be in Charlotte. There are excellent health facilities and physicians in Charlotte, and there is a NGDF Support Group there! If you go back to the Home Page, you can click on the Charlotte Support Group and be in touch with them.

[kit1960]

#1068831

Hi Nancy,

Thank you so much for responding to my post. While my endocrinologist doesn’t feel that the femoral nerve entrapment or periformis syndrome are symptoms or causes of Graves’ Disease, she does feel there is a "link". She referred me to an orthopedist, who ordered an MRI and EMG. The MRI came back clear; however, the EMG did show nerve damage. The orthopedist then referred me to a neurologist, who diagnosed the femoral nerve entrapment and periformis syndrome. He, in turn, agreed with the endocrinologist that, while neither condition is a cause or symptom of Graves’ Disease, it is related to it. The neurologist told me that it is probably due to the fact I gained 20 pounds after the RAI-131 treatment. Please note, I was not overweight to begin with. I’m 5 feet tall and weighed 115 pounds when my Graves’ Disease symptoms began. My weight did go up to 135 pounds, but has since gone back down to 120 pounds. The neuro wanted to put me on Neurontin or Lyrica, but I declined. We decided on lidocaine patches and a muscle relaxer. Each take the edge off the pain, but neither stop it completely.

As far as the TMJ goes, my maxillofacial surgeon feels there is a direct relation between the Graves’ Disease and the breakdown of the tmj. He recommended that both joints be replaced; however, he uses bone grafts from the hip. Due to the relationship between Graves’ Disease and osteo conditions, he suggested artificial replacement. He does not perform artificial replacements and is sending me to another surgeon in NYC next month. He’s not certain that I’m a candidate for the artificial joints though.

As far as my employment goes, I’m not ready to give it up yet. I plan to continue my fight against this disease! The disability questions are a ‘"just in case" measure. I work for my local school district as a security monitor, so working from home is not an option. I am fortunate, in that the school is 5 minutes away from home. I truly love my job and would miss the students if I left. The principal has been wonderful, as her mother had Graves’ Disease, so she is very understanding about "good days" and "bad days". Any guidance you can provide me with how to cope with this disease would be greatly appreciated.

Kit

[ewmb]

#1068832

Kit,
You might want to read up on some fibromyalgia books and sites about how to help the nerve intrapment. This is quite common in some fibro patients. I have had it for almost 15 years now. My great husband massages me each night and I stretch each morning. It has been hard to not be able to exercise with my hyper state. I remember something about tennis ball massage for this????? I also think that some people respond to ice treatments or to heat or both. I have a rice bag that I can heat up in the microwave. You can make one with two old socks and cheap rice from the grocery. Just don’t put too much rice in the socks before you sew or tie them up. Use a small towel to cover the socks and heat them up slowly until you learn what setting and time on your microwave gives you the desired results. You can put them in the freezer too.

Have you had a bone ( DEXA) scan done yet? I would think you would do that before any kind of bone replacement real or artificial. I found out just a few months ago that I have osteoporosis already in my spine and osteopenia in my hip. I am waiting to do something medication wise about it after I am stabilized on my thyroid. That was another reason that I decided on RAI over drug therapy. I am not yet menopausal, heading that way for sure, and my gyn told me that my osteo was certainly a result of my Graves.

Hope tomorrow is better for you.

ewmb

[kit1960]

#1068833

Hi ewmb – We live on the North Shore of Long Island, approximately 2 hours away from Astoria. However, my mom grew up in Astoria and my dad in Jackson Heights, so I’m very familiar with that area. My son is interested in attending UTI/NASCAR Tech, so we will see how that goes. Thank you for all the info you provided regarding the Charlotte area. I will check out those websites you mentioned. Right now, I’m having some Graves’ Disease related "intestinal issues", so it hasn’t been a great day. Still not quite ready to give up and apply for SSI though. Please keep in touch and let me know how you are coping. Kit

[ewmb]

#1068834

Kit,
My son wants to be an artist now but in his early teenage years became very interested in NASCAR. If you go back to Charlotte you’ll have to take your son out to Concord to the Lowe’s Motorspeedway. That’s out past the university where I grew up on highway 49. My parents live in Davidson which is near Mooresville which has a lot of the big garages. I knew a boy here who went to UNC-Charlotte I think who was interested in the car industry. You might get your son to check out their curriculum or CPCC- which is Central Piedmont Community College. Sounds small but it is a really big college. I wrote you a post about your intestinal issues. Try the coconut cookies and see if they work for you and the acidophilus or other bacteria. I have a theory that the Graves can kill off a lot of the good bacteria as they can’t grow fast enough for some reason and that causes issues. I was also very sensitive to dairy when I was hyper, never had been before, and that all went away too with the things I mentioned.

My brother and his wife live in Manhattan now. I went to LI once for a wedding of a friend from high school, almost 25 years ago now! The area is beautiful.

Keep in touch about your job.

ewmb

[kit1960]

#1068835

Hi ewmb — Thanks for the advice on the coconut cookies for the intestinal issues. They worked great and were delicious also. Hope things are good for you and that you are feeling well. Talk soon! Kit

[ewmb]

#1068836

Kit,
Glad to know that the coconut worked for you. I wish I knew why it worked but I am just grateful that it does. How are the job preparations going?

ewmb

[kit1960]

#1068837

Hi ewmb,

The preparations for going back to work are proceeding nicely. I just received the letter today from the school superintendant regarding opening day. I truly cannot wait to go back. As lousy as I feel, it will be great to be back with the children and co-workers. Somehow, children have a way of making me feel better. I can be having the worst day, and something as simple as a big smile from one of the kids, makes the day brighter. I can’t forget to mention the wonderful group of people I work with. We’re a small staff of about 75 employees and consider ourselves to be "family". When one of us is having a "bad" day, everyone else pulls together to "get the job done". One co-worker has MS, another has fibromyalgia, another Hasimoto’s, not to mention those with back problems, migraines, etc. I know I’m fortunate as a GD sufferer, in that I do get a lot of time off from work, i.e. summer, long weekends, holiday breaks, etc. Without these benefits, I don’t think I’d be able to work. How are things with you going? How have you been feeling lately? Talk soon!

Kit

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