Give Sheila Her Life Back

03/12/2022

Due to this condition, and the struggle to get treatment I’ve had to say goodbye to the job I loved for the last 9 years. The History Museum at the Castle was wonderful in working with me. They decreased my responsibilities until they just couldn’t decrease them anymore to allow me to continue to be part of the team.

I’m angry and frustrated. I’ve lost one more thing in my life due to my health and the insurance company doesn’t care and won’t approve the IVIG that I need to control my autoimmune mediated neuropathy.

The disability insurance company doesn’t believe my doctors and physical therapist that I shouldn’t be working so I’m fighting them along with the health insurance company.

I’m also trying to get Social Security disability, which is taking forever. Why does it all have to be so hard?

25/07/2022

We began the bathroom remodel in May. It is finally finished. Our goal for the bathroom was achieved; I can safely move around, take a shower or bath safely, and the washer and dryer are now upstairs. The bathroom was remodeled with my walker in mind and the possibility of being in a wheelchair. This improvement will make my life a little easier as we continue to try to get treatment.

Thank you to everyone who financially assisted by giving to our Go Fund Me page and everyone who assisted with physical labor. Especially my Dad who did a lot of the work to help make the remodel affordable. My Mom who painted the trim, cleaned up during every stage of remodeling, and was Dad’s assistant. And finally my niece, Emilie, who is helping us to combine our unique styles into a comfortable decor.

02/03/2022

Update: I’m still struggling from day to day. I’m now working less then 15 hours a week. Physically it has helped to decrease my work hours, mentally it is difficult.

In February, I had two wonderful things happen.

1. We found a companion for Annie. His name is Milo. And he is a bundle of energy.

2. We found a study I may be eligible to participate in. And it is only 3 hours away.

10/01/2022

Back in October, I had to decrease my work hours even more due to this illness. My hands were shaking and having difficulty typing, holding a pen or moving the mouse. I was falling almost every day, because I was always so exhausted from trying to work 30 hours a week.

I am now only working 14 hours a week, which seems to be the right amount for now. My hands still don’t work all the time but they are a little better. I’ve also stopped falling so much. But I have a lot of time on my hands, so I started doing puzzles to keep my mind active and give my hands some therapy. I routinely drop pieces onto the table, but it doesn’t matter because they won’t break. When I’m dropping pieces it is frustrating, but it feels really good when I complete a puzzle.

These three puzzles are the ones I put together over Christmas.

05/12/2021

Three years ago I could have made these coffe ganache tarts. Now I need “help.” Today my friend Angie Justman came and helped me make these tarts. Her “help” means she did most the work because my hands would not stop shaking.

It was lots of fun to spend the day together and do one my hobbies, that without a lot of assistance I can no longer enjoy.

11/10/2021

Today, the insurance denied the necessary infusion therapy for my condition for the third time. I have seen three different neurologists about my small fiber neuropathy. Each neurologist has come to the same conclusion that I have a antibodies attacking my nerves causing me to have balance issues, problems walking, swallowing, talking, writing... the list goes on and on because the small fiber nerves go everywhere in our body. The only way to stop the antibodies is to suppress my immune system, which means either plasmapheresis or IVIg (both are infusion therapy). Due to my liver, the last neurologist feels plasmapheresis is the better route.

The insurance however, doesn't care how many doctors say I need it. They only care that I don't have one of the "approved" diseases for immune suppression. Plasmapheresis is not something that we can just decide to pay for out of pocket, it is way to expensive and is something I will need to have for the rest of my life.

Please contact your state and national representatives and demand they start to make changes to our health system. I can not be the only person who has this situation. The health insurance company should not be able to deny coverage of a treatment that three specialists are saying I need.

16/09/2021

Today, I received notification the second attempt to get me treatment has been denied by the insurance company. The treatment is the only chance I have at stopping the antiFGFR3 antibodies from attacking my nerves and making my symptoms worse.

I was diagnosed 4 months ago and have continued to have my health decline without treatments. Meanwhile the insurance plays the game of saying the treatments are medically unnecessary because this autoimmune condition is so newly discovered. The longer I go without treatment the less chance I have of my nervous system healing. I only one possible treatment for this autoimmune due to other underlying conditions and the treatments are being denied to me by the insurance company.

06/09/2021

06/09/2021

06/09/2021

If you would like to help...

My Hope My name is Paul and I’m hoping to raise money to help Sheila and her husband make their… Paul Frazier needs your support for Make Sheila's Home Safe