Today Is The Big Day And I Need To Ask A Favor

"Earnestly I Seek You"   10" x 10" original collage by Crystal Marie Neubauer

It has been seven months this week since I first shared my health diagnosis and it's time for an update. 

If you hadn't caught it back then, you can read the original post at this link, the one that I shared with you that I had been in a rapid decline since the summer before, losing over a third of my body weight in less then six months with an escalation of symptoms from a host of auto-immune and chronic illnesses that I have been dealing with most of my adult life. It all came to a head during my long teaching trip at the beginning of 2019, when my symptoms flared and left me bedridden in my hosts home, where I just managed to pull off teaching my workshops, but left the gracious host at my first stop bewildered on how to care for me. 

I've written a few updates since that time. I saw one specialist who ordered some tests and recommended a few prescriptions that have helped me to stabilize while I wait to see the big specialist. I've gained about a third of the weight I lost back, going from just hanging on to 98 pounds in April, to a more healthy looking 115 pounds today. I can eat more of the trigger foods most of the time, thanks to the meds, but they still cause symptoms and the meds seem to be taking a toll on my kidneys and liver function, which have both been damaged over the years from both Lupus and Lyme disease, and most likely the mold exposures that have contributed to the severity of my symptoms.

Physically, most days are difficult still. I am worn out from normal activities, and deal with daily chronic pain to varying degrees, which escalates later in the day until I hit a wall and can't push through. The wall changes daily, but I'm grateful that on many days, I can still manage to put in my time at the studio, and perform the tasks at home that need to be done to care for myself. 

My recent teaching trip to Arizona, while rewarding in the connections that were made there, was difficult and a reminder to me that I am not capable of managing the level of physical work that I used to be. I have been turning towards creating smaller, shorter workshops that are easier for me to manage, while beginning the process of creating a series of videos on the use of encaustic wax with alternative substrates, which I hope to be able to release as an online course by spring. 

There are still a lot of questions as to the stage of the disease and, I'm praying, still solutions to be found towards improvements in my day to day quality of life. And today is the day. The long awaited appointment with the top specialist of this more rare form of mast cell disease, mastocytosis. Doctors who specialize in Mast Cell Diseases practice in multiple disciplines. This one is an endocrinologist, a thyroid specialist, which is the perfect fit for me, since I lost my thyroid to disease activity some years ago. There seems to be some connection between hormones and mast cell activity that she will hopefully help shed some light on.

As of end of May, I lost my insurance. I've been paying for most tests and appointments since that time out of pocket, and foregoing certain appointments while I waited for the promised new insurance to kick in. Except that the promised new insurance isn't happening now. I don't want to muddy the waters of this share with the details, except to say that I am devastated to be told this just a week before my appointment. 

I have been waiting for this appointment for six months. It cost a hefty deposit up front just to make it, with another hefty amount due when I check in. The insurance would have covered the extensive lab work and tests the doctor will need to order and that I have been holding on waiting for. 

So today will be out of pocket, and I'll ask the doctor to map out a reasonable plan to pay for labs out of pocket and see what tests can be put off until I can secure insurance or funds to move forward. 

And this is where I need your help.

I have taken measures to get the healthcare and funds I need to support myself in the future, but today is the big appointment, with the labs and the tests and new meds, that I am hoping I will not have to put off any longer. With your help, I can move forward in my medical care, and in my quality of life without losing more precious months waiting for new insurance to kick in.

If you feel so inclined, here is how you can help: 

So many kind and generous people responded to the original gofundme campaign when my friend Jana launched it back in April. It was exactly the boost I needed to get myself moved to a new home, treat the air in the mechanicals when I got moved in, cover the fat deposit for the specialist I'll be seeing today, and provide me with the funds needed for meds, labs, special food, and all that I needed for that major transition point in my life. But it was so much more than funds for the needs that were met. It was a life changing display of how much support and love there was surrounding me. So much so that it wasn't just my physical body that benefited, but my emotional self began to heal at a much deeper level too. I am resurrecting the account for a time. You can find it by clicking this link. 

If you are an admirer of my art and have wanted to add an original work to your collection, I have a pop up shop on Facebook at this link, with works that are retired, were book or class samples, have been in my personal collection, and works that have been reimagined. Directions for purchasing works are included in the album.

Locals may be interested in my December Friday Night Lite. Details and registration can be found at this link.  

I have a print sale with a concurrent raffle opportunity at this link. 

And finally, for the long term, my only longer workshop of 2020 on the calendar will be happening at Way Art Yonder in California in March. Details and registration can be found at this link. 

My Shields show came down on Sunday and what wasn't sold will be hanging in my studio for the December Holiday Open House at my studio. You can still purchase at this link before much of what remains heads off to my gallery in Scottsdale. Simply choose the design you are interested in and message me at crystal@crystalneubauer.com for a shipping estimate and invoice. 

It isn't easy to ask for help. Everything in me resists this. It is humbling and uncomfortable, but it is also the most incredible feeling to know how many people are out there, who want to see me get well and succeed. With your help I know I can make it through this difficult year and find a way to continue to provide meaningful content and art for years to come.

With so much love and gratitude. Thank you.