Nelle’s Care

10/19/23:

Nelle spent 3 weeks in June at The Bridge Recovery. She still lives with Complex Regional Pain Syndrome and in pain every day. She continues to do all she can to improve her health daily.

05/17/23:

It is with great, serious, urgency and not taken lightly that I provide this update asking for your help!

Nelle is ready to kill herself!

She has become convinced that me, our kids and granddaughter would be better off without her.

*It does NOT have to do with anything related to all the amazing things you have done and our experiences with Cheer Choice.

I’ve been taking off work to stay with her. I’ve been arranging her to stay for 21 days at The Bridge Recovery Center, in St. George Utah. They are the only facility in the world that is equipped to help her with her very rare cranial Complex Regional Pain Syndrome (CRPS), past traumas and more.

We have secured a spot for her for now. But, we need to come up with the rest upfront before the first of June, or she gets pushed to July, if not by then, pushed again and so forth for a period of 6 months. Our insurance may reimburse some of it. But, we need your help! Nelle can’t wait that long!

We also can’t afford to have her go to the wrong treatment options with other local facilities, as they would treat her case in error because it’s not a good fit and make matters worse.

I am also trying to free up home equity, but if that’s not approved, if I don’t raise the rest, things can get even scarier with her being at an even higher risk with more time she has to hold on while waiting.

I’m on standby often with just her at our home so if something were to escalate, for me to be ready to call 911.

We need your help!

This is my Nelle! Our Nelle! All she wants to do is serve her family and friends, help others in the Chronic Pain Community, to help save lives. So, it is torment for her to even consider needing to take time for herself if that means taking time away from all of us or for any of this to hurt or burden any of us.

Will you please help in any way you can! She is my world! Sharing my video post, this GoFundMe, asking for people to help donate, whatever you can do. I cannot thank you enough!

Most sincerely with a broken heart and reaching for all angels and Gods blessing to help save our Nelle!

Rex

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Original Message:

Nelle is one of the most giving, caring people I know! She has always been there to support any of our family in need and through these last hard years supports us through texts and emails from mainly her darkened bedroom because of the pain. She has never asked for help and she doesn’t ever respond when we ask how she is doing. She has kept all the pain and despair to herself. Now it is time to step up and help her....get the surgery and support she needs! She has tried EVERYTHING to get insurance to pay but to no avail. This is Nelle’s exact original letter that she has sent to the insurance along with several Drs support in that this was medically necessary and that she needs this 100%.

It has been read and denied now 4 times. We thought the best way to speak on behalf of Nelle is to use her own words as she fights the best she can....

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Letter Sent to Provider Asking for Medically Necessary Coverage Approval:

To whom it may concern,

First, allow me to thank you for taking the time, and for your careful consideration in this matter.

After much careful thought about what would be the best next possible step in giving myself a better chance at life, as the options are extremely limited now, especially after the denial of Ketamine treatments (which I can understand).

I have come to believe strongly, and certainly hope that 'weight loss" surgery is not just needed, it is critical in me being able to perform as a wife, mother, new grandma, and overall a woman of service, who simply has the ability of "doing"!

As you can clearly witness, I have been on and through many, many surgeries, procedures, and medications...all with the aim to win back some of my health and life after three tumor removal surgeries that have been very damaging to several nerves around my left eye and in my head.

I also have damage to nerves in the right side of my neck from a procedure meant to help my head.

So with that extremely summed up version, you may try and imagine the pain that I go through as many nerves scream in my everyday life. This has only been compounded by a few other things...CRPS being one, and the others...bone deterioration from lack of movement (mostly in my shoulders, and weight gain.

In my life before tumors and all that followed I was a woman that adored living and doing. Loving health and exercise, and the gifts they gave me!

Now, while I still count my many blessings, I cannot get up and do whatever my mind or heart might desperately want. I have little control of what my nerves choose to do and for what reason, how long and how hard it hits. And on most every attempt to give my body what it needs through exercise, I end up in a very hard, fevered, pain flare up. And while in bad flare up, I cannot do the simplest exercises, or even cooking the most simple meal.

I am very aware that there most likely will never be a "cure" for my extremely serious pain, especially around my eye. But I do firmly believe that with the aid provided me of the Lap Band by an amazing surgeon Dr Darrin Hansen, I can then relieve my body of excess weight pulling on my already tired and worn shoulders and neck and the very upset nerves there.

But I am further confident this will prove helpful with my overall pain in a significant capacity, as often my neck and shoulders trigger nerves that travel to my head and eye, which in turn put me straight back down, not able to move for hours and even days.

I have considered breast reduction, because if I lift or hold the weight for a moment with my hands, significant pressure is released from my shoulders and neck. But that surgery is far more invasive and risky, and can only address one issue.

It has been a very difficult 8 years (putting that very lightly). And one things adds to another, and then another, and so it goes. I am caught in a wheel of hell! I need relief, my body needs relief so I can help it get stronger, and my shoulders need extra help so I can build muscle to protect from further deterioration...and the more weight I can lose, the more I can move, and the more I can move the more I can protect it all!

I will always have to deal with some pain, but it doesn't have to be suffering so deeply, so very often!

I need a hand or a few to reach out now and help me. And this, I truly believe, is a very worthy case to be considered as absolutely 100% a medical necessity! Had I not had the trials I have been dealt, I simply would not be lying here (while in horrible pain) taking a leap of faith, requesting for some good souls to approve this to be covered under the umbrella of our insurance and supported fully in the endeavor.

I would be living!!!

If you only covered 1% of existing cases out there, I can say without a single doubt or issue, that I and all my loved ones are worthy of that assurance and blessing! They all suffer with me!

Lastly, I would ask each of you this...

Have you ever dreamed of flying??

Well, I have!

Only it looks alot like walking out my front door, allowing the sun to soak in!

It looks like being able to take road trips, or just having simple game nights with friends!

It looks like being able to visit my family and parents especially without seeing the endless worry on their faces for me!

It looks like having the freedom to serve, build up, and to love how I was born to!

It looks like continuing my role as a wife and mother, and relieving my husband and children of some of the massive role of "care takers"!

It looks like holding my sweet granddaughter (Indy Grey) and SHOWING her the world, instead of only dreaming of it!!

It looks like knowing myself again!!

The worst thing about my circumstance is not the pain itself, it is what it robs me of!

Please allow me to show you what putting faith in this procedure, Dr Hansen, and myself can accomplish and prove!

Thank you again for using some of your precious time walking with me down a little of my path, and hoping with me for better!

Most sincerely,

Nelle Muhlestein

PLEASE GIVE BACK TO NELLE AND HELP HER FLY!