[angelamercy]

#1060141

I was diagnosed with Graves Dec 30, 2011. Symptoms started August 2011. Since then I have had my thyroid removed, liver toxicity, 12 weeks of infusions, 10 days of radiation. First surgery March 26, 2013, second surgery to correct double vision August 2, 2013 and the final scheduled sometime in November or December. All in all I am grateful for my family, my husband, God and of course all the doctors and staff.

I have not been able to work since October 2012. I have applied for SSDI and they still have not made a decision. We have pretty good insurance but we still owe A LOT! So that is why we applied. I was a bathroom & kitchen designer but cannot read for more than 20 minutes without getting a headache or double vision. I am still extremely light sensitive and we are hoping the final surgery will correct that.

All in all we are blessed. I tried to get a support group going in the largest medical clinic(s) in the State of WI. No go. I am so depressed but do not want to add another bill to our growing stream. It hurts to cry. I can not just go into our vegetable garden because even with a hat and sunglasses on I will end up with a headache so bad I am worthless the rest of the day. I can’t read because it causes pain and double vision. Even now my eyes are goring tired. I can’t sew because I can not thread the needle. Cooking new dishes requires reading a recipe and a measuring cup. Shopping is usually under fluorescent lights. Shooting pool requires eye to hand coordination. No yoga or gym because the vertigo that I developed cannot be corrected until after the last surgery has healed. I do walk a couple of dogs for exercise. 😎 Computers backlight bugs my eyes. Any jobs out there for vampires. LOL

Well tomorrow is another day. It was just a very bad day. These to shall pass. Thank you to those who are reading this. It is nice to know that there are people out there who know what I am going through.

Angela

[Kimberly]

#1180713

So sorry to hear you are going through all this. Hopefully, this last surgery will put you back on the path to reclaiming your life.

The GDATF actually had a support group in Baraboo (outside Madison) for a while, but the leader there is no longer active.

If finances are a concern, you might check out the following site, which includes listings for free and low-cost health clinics across the country. I understand that you don’t want to break the bank right now, but at least an initial evaluation would be helpful to sort out whether your current circumstances are causing the depression, or whether there might be an underlying cause that could benefit from separate treatment.

(Note on links: if you click directly on the following link, you will need to use your browser’s “back” button to return to the boards after viewing, or you will have to log back in to the forum. As an alternative, you can right-click the link and open it in a new tab or new window)

http://www.hrsa.gov/index.html

On the disability filing, I attended a presentation last year from an attorney who said that the average time from initial filing of paperwork to getting a final decision in my state (this includes the appeals process) was 514 days! An experienced attorney is your best resource for trying to plow through the system as efficiently as possible. NOSSCR is a national organization for disability attorneys, and they offer referral services. You can visit their site at http://www.nosscr.org/. By law, a disability attorney cannot charge you until your case is settled, although they *can* bill for reimbursement for reasonable expenses such as photocopying medical records.

Wishing you all the best!

[angelamercy]

#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

[Kimberly]

#1180715

Hello – The GDATF recommends that patients *not* start a support group while they are actively dealing with issues such as getting thyroid hormone levels and/or thyroid eye disease.

The reason is that getting a group started takes a HUGE amount of time and energy. Volunteer support group leaders secure meeting space, book speakers, publicize the meetings, communicate with current and potential members, and facilitate the conversation during the meetings. I’ve had 4 different times in my 6 years of dealing with Graves’ where I was so stressed that my levels went hypER again…and one of them was when I was setting up the group that I now lead!

Also, the GDATF wants to make sure that each group has a leader that has “been there, done that” and is in a stable place to offer leadership and support to others.

ThyCA (a support group for thyroid cancer) recommends that people wait 12 months after treatment to start a group. Although the GDATF doesn’t have a specific timetable, we do look for leaders who have not only gotten past any medical issues, but who are NOT dealing with other personal complications (illness in the family, career change, move, etc.) that can drain time and energy.

Once things settle down, we would love to talk to you about going through the application process to a new group! You can contact the GDATF at 877-643-3123, x101 or at info (at) gdatf (dot) org. In the meantime, if your own doctor might be willing to run a group out of his/her office, this might be a good alternative.

Take care!

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