[angelamercy]

in reply to: Haven’t posted in a very long time #1184482

Your post is exactly what I needed at this time. A good reminder that this disease takes time to become manageable. There are ups downs and downs.

Sometimes I become overwhelmed when I read so many posts. It has only been one week being told of being hyper again. Only three days of being told eye pressure is up again. I have been kicking myself thinking I contributed because of smoking again.

I’m dusting myself off and trying to quit again. This disease is a journey. Thank you for that reminder

Angela

[angelamercy]

in reply to: Confused about blood test No thyroid #1184462

Kimberly,

Thank you for your reply and information. I did meet with a new endo. He laid out all my pass tests and showed me that no test was consistant with another. He has also ordered additional tests due to skin rash, plus antibody and others. All these tests were completed 2 years ago at the Mayo Clinic.

Just being heard is a validation. He explained that doctors are trained to treat the 90-95% and that my case is clearly the extreme 5%.

Again, thank you.

Angela

[angelamercy]

in reply to: methimazole and Hyperthyroidisim #1181315

MJ – I agree with all. I was one of those “RARE” cases of methimazole. Don’t quote me but I do believe less than 4% will have a reaction to methimazole. I happened to be one of the worst case scenarios and my re-action was within 2 weeks of taking.

TSH levels can be very confusing. Testing for the past 22 months, every 3 months has been consistent. I am closer to hypo than hyper in the past 12 but at this point I am still in the “normal” range.

Remember to take your medicine consistently and also close to the same time daily. Sounds like you are doing well.

[angelamercy]

in reply to: Radiation Therapy #1181325

Hi. If you are talking radiation therapy for your eyes – I did have 10 sessions. I only took off of work the first two days to see how I was going to feel. In my case it was more mental than anything else because of the mask I was made to wear and I am claustrophobic.

After that, I went to work early, took off for my session and then returned to work. Everyone at the Medical College hear in Milwaukee was wonderful. I was just thinking last night on how I still have that mask and I STILL plan on making it a work of art. 😎

My Graves Eye disease progressed quite rapidly. The radiation helped slow this down so I was able to have decompression surgery earlier this spring.

Good Luck and let me know how it goes.

[angelamercy]

in reply to: Seeing Endo tomorrow, 9/27/2013 #1181265

Thank you all. So, I had a great visit with my Dr. My TSH levels are on the high-normal range and have been the last 12 months. She will not increase my meds due to the GED and treatments I am getting.

Yes – the depression was discussed. Our insurance only lets you see a counselor once a month. At this time we have chosen not to go there only because of increased medical bills plus we have found out that our insurance is almost doubling starting in January. Frustrating!

I will be tested October 17 because our family has a high number of Type 1 and type 2 diabetes.

Thank you all for you replies. At this time, I will rely more on God, less on myself, more on my family and friends since they always tell me to call when I need to vent, talk or just be. More time on here since it helps me to be able to help others even if it is a mere word of encouragement.

[angelamercy]

in reply to: Just when you think……… #1181139

Oh by the way have you ever been to Benny’s Pub in Hagerstown? They have GREAT food!

[angelamercy]

in reply to: Just when you think……… #1181138

Hi Barbara.

Amazing, huh? I have been dealing with Graves Eye Disease since August of 2011. Thyroid removed, infusions, radiation, two eye surgeries – last one August 2nd of this year.

Anyway – I have those days where I am full of energy and then WHAM – I am so tired I can barely get out of the house. Full weekend and Mon & Tues I took loooooong naps. My thyroid levels are normal. Last week my doctors told me they were delaying last surgery until January. We were hoping to have in November. The reason: Your body has been through a lot and needs more time to heal and rest.

I am sure you are a lot like me, resting is hard. Keeping busy use to be my best medicine. Not so much this past year. I have learned to listen to my body.

Good luck and I hope the additional medications help.

Angela

[angelamercy]

in reply to: advice with labs & 1st specialist appointment #1181209

I agree with Kimberly. You need to be your own advocate. When I was first diagnosed I went to an endro who then referred me to an otolaryngologist. To date, I have two different eye specialists, one endocrinologist, one general practioner, and one ENT doctor. Three of theses doctors are with one clinic and the other two at another.

The most important thing is to be your own advocate, ask questions, keep every doctor informed and keep a journal with all tests, medicines, questions and answers. This may seem like a lot of work but this has helped me tremendously.

Good luck.

“Be kind, for everyone you meet is fighting a hard battle.”

Angela

[angelamercy]

in reply to: Too many doctors & I hate steroids. #1180718

Amanda – your post brought back so many memories. And it was only last year for me. I hated the steroids. HATED them. I’m still waiting to lose the 40 lbs I gained yet it is hard when you are not released to go to gym.

Keep your head up, smile, fake it till you make it – above all vent to those who trust and believe in you. Know that this too shall pass!

Angela
Symptoms started at annual eye exam 8-2011
Diagnosed 12-30-2011
Liver toxicity 1-10-2012
Thyroid removal 1-26-2012
Decompression surgery 3-26-2013
Vertigo 4-2013
Muscle surgery 8-2-2013

[angelamercy]

in reply to: checking in and being thankful #1180762

WOW & Thank you. So nice to know that some day I will get there. I needed that encouragement today.

Thank you.

Angela
Diagnosed 12-30-2011
Liver Toxicity 1-10-2012
Thyroid removal 1-26-2012
Decompression surgery 3-26-2013
Muscle surgery 8-2-2013

[angelamercy]

in reply to: Just venting #1180714

Kimberly, Thank you for your input. I would LOVE to be a volunteer or start a support group in our are of Greater Milwaukee.

As far as SSDI I am going through a very reputable company and I read the 514 days also. They assured me that MOST only take 3-6 months. I am to the point that I am thinking of writing our congressman.

More information on starting a support group would be great. As of now I can only be on the computer on & off before the double vision starts, but I have met MANY people in the same circumstance and all they want is someone to listen to them.

Thank you I will check into your recommendations. Much appreciated.

Angela Mercy

[angelamercy]

in reply to: Quitting my job #1174699

Thank you both. It is nice to have some one to relate to. I am sick to my stomach because I am going in tomorrow monring, giving my resignation, collecting my personal items and leaving.

I was a bathroom & kitchen designer for 20 years. Then four years ago because of the economoy I lost my job. I went back to school for two years, attempting to get a degree in radiology. I did not make clinicals and decided to go back into the work world. I was only working for four months when I was diagnoised.

Our lives have changed so much and my husband is extremely supportive so financially and emotionally I know this is the right thing to do. Part of me feels bad for not giving a two week notice yet it is what it is.

Today is a bad eye day – bulging swollen eyes and eye cramps. Now is the time to concentrate on my health. Thank you ladies very much!

Now to just get trhough today and tomorrow morning.

Angela

[angelamercy]

in reply to: Radiation #1172755

I was diagnoised Dec 30 with Hyper and Graves. The methamozile made me go into liver failure and thyroid storm so my thyroid was removed in January. I did two rounds of infusions which helped but my body can not handle more infusions. I am one of the lucky few whose eyes get worse after having my thyroid removed. Just like I was one of the few who can go into liver failure. I am scared of the radiation only becuase they told me some people (very few) get worse the first couple days of radiation. In just three days my lids have dramatically swollen, so I am sure I will be one of the few who will feel worse. I am also now hypo so that doesn’t help either.

I quite smoking because of this disease and all I want to do is smoke because really? It’s not like it is improving.

I am normally a very positive person, yet lately not even weeding in my garden or yoga is helping. I sent my husband the letter to husbands from this sight. I am THANKFUL I have a wonderful man. I have told him NO, WE are not going to be fine in time. WE don’t have Graves, I do and that isn’t fair to him. I’m just frustrated!

[Author]

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