Help an Artist Paint Again After a Devastating Accident.

Hello, my name is Caryn West and I am a professional artist that hasn’t been for able to work in over seven months. In a freak accident that resulted in extensive surgery on my hand and wrist, I was subsequently diagnosed with CRPS (Complex Regional Pain Syndrome) a couple of months ago.

I have lost all function in one of my hands, a crushing blow. I desperately need to paint in order to support my kids and I, but this disease is an expensive beast to fight. It has already put me in a dire financial deficit so I am asking for help to get the treatments I need; treatments that will give me the greatest hope in an otherwise hopeless situation.

If you don’t know what CRPS is, Im glad, as it means nobody you love has been affected by it. It’s called the “suicide disease” because it causes the worst pain known to humankind. It also causes stiffness in the affected limb typically rendering the limb useless as with my hand. It can spread throughout the body and even jump to the opposing limb wreaking havoc on muscles, ligaments, tissue, bone and virtually every system in the body. As it advances it becomes harder to treat. I am desperate to do whatever I can before this happens.

Little is understood about CRPS, but it can happen to anyone after any extremity injury or surgery, simple or complex. The diagnosis comes with a feeling of complete abandonment. You aren’t given a road map or a treatment plan. I was given the name of a mental health provider to help me process the news.

My Story

On September 4th 2023 I fell roller blading with my son and sustained a total of nine fractures, four in my hand and wrist. My life was turned upside down in a matter of seconds.

Ten weeks after the fall, I was told I needed extensive reconstructive surgery. After the surgery, the pain was unbearable, so bad that I was in and out of the ER multiple times unable to tolerate it. At this point I honestly believed amputation would be better.

I went to physical therapy at my surgeons office and did everything I was told to do at home in spite of the severe pain, but my hand was not improving and instead becoming increasingly stiff. I knew in my gut something wasn’t right.

When the pins were removed nine weeks after the original surgery, the surgeon told me he was going to stretch my hand. I had no idea what this meant. What he did was MUA (manipulation under anesthesia) which I’ve learned since was quite literally the worst thing he could have done. After this procedure, I woke up screaming. It felt as though every single bone in my hand had been pulverized. I was terrified and inconsolable.

As the weeks went by, I continued going to therapy but now my hand was much, much worse. My joints were turning into cement and there was nothing I could do to make them bend or straighten and my wrist was frozen.

For at least two months I was suicidal. Nobody could understand what I was going through and I felt desperately alone and hopeless. The pain was so bad and I couldn’t imagine a life where I was unable to work, take care of myself and my kids or do any of the things that gave me joy. I still can’t but I am determined to fight for my life, my kids and my livelihood. The fight is constant from the minute I wake up until I finally get to sleep. Some days I fall apart, others I seem to muster up greater strength, but I am not living…I’m just hanging on.

My hand is completely useless and extremely painful. Beyond not being able to paint I struggle with simple basic tasks. I cannot do my own hair or even pull it back. I cannot tie a shoe, zip a zipper, cut food, open containers etc etc. Getting through each day is exhausting and I’m left feeling extremely defeated most of the time. I’ve lost my appetite completely, I don’t sleep well, sometimes not at all and I’ve lost interest in doing anything because everything brings on more pain and frustration. The depression that comes with CRPS is as severe as the pain and physical imitations

I have nightmares about my surgeon. I cannot forget being in the recovery room in more pain than I could ever have imagined while he smiled and said, “I just gave you the Cadillac of hand surgeries”. I’ve learned since, from different surgeons, that most of what he did was unnecessary. In fact, every doctor who has seen the surgical notes has told me that they’ve never seen so much done to an “intact” hand in their entire careers. In addition to procedures that apparently weren’t necessary at all, my surgeon removed a bone that could have been wired together and removed part of another bone because he said it showed signs of arthritis, a decision he made while I was under anesthesia. I have never suffered from arthritis in my hands at all and I was painting six days a week before this happened. My heart is broken knowing these things and feeling like where I am now could have been avoided. Everything he did from excessive surgery, MUA and hand therapy that ignored the obvious signs of CRPS, made my hand worse. His attitude toward me was unprofessional and at times unforgivable. I think he knew he messed up.

The below photos (in order) are before the pins were removed, then after when he also did the Manipulation Under Anesthesia and finally where I am now almost four months later. My hand is now fixed in the classic CRPS claw position where I’m unable to straighten it or close it.

I know that people live with far greater losses than the use of one hand, but I’m an artist who doesn’t just paint because I love it, it’s my livelihood, it’s all I’ve got. I am sixty-one and after a devastating marriage and divorce, I believed my art was the one thing that couldn’t be taken from me. ANYTHING we have can be taken in a split second.

As for my art, I have done some amazing philanthropically motivated projects throughout my career (Google Caryn Fregoso Athletes With Heart and Muhammad Ali). In 2008 I wrote and illustrated a coffee table book titled The Trouble with the Alphabet which addresses human right abuses effecting children globally ( The Trouble with the Alphabet ) Before the accident my art was selling for 10,000 to 14,000 dollars per painting

( www.carynwestart.com ) and things were looking up for the first time in many years. Now that hopefulness is gone and I am terrified. Not being able paint isn’t just the loss of my livelihood, it’s the loss of the thing that defines me. It is a loss that cannot think about without seizing up in sheer panic. I want to paint, I need to paint. I’ve never wanted anything more. If I’m able to resume painting, God willing, I will do so with a new appreciation for what my hands are capable of. Maybe if I continue painting animals I will focus on endangered species and give back to the organizations that work to protect them.

Request

Due to this unfortunate situation, I am financially wiped out and the stress of this is killing me. Stress, anxiety and emotional distress are all triggers for exacerbating CRPS and causing it to progress. I’m asking for your help to cover the treatment options that insurance won’t, as well as the cost of traveling back and forth out of state to get these treatments. Any donation you can give to help make this happen would be incredibly appreciated by me and my three kids. You would be potentially giving this indebted artist her life back and the ability to support her family. I don’t think anyone can fully understand the impact losing use of a hand has on one’s life until it happens to them.

About the potential treatments I'm hoping to try

Specialized hand therapy for Stiff Hand Syndrome called CMMS (Casting Motion to Mobilize Stiffness) that is available in Arizona. This will involve extensive travel back and forth as well as some extended 3-10 day stays in Arizona for many months in addition to the treatment itself. I've been told that as still as my hand is I should be in hand therapy for 4 hours a day 5 days a week. Insurance doesn't cover this. They cover 30 minutes twice a week.

A CRPS recovery center in St. George Utah (The Bridge Health Recovery Center) that that has had great success getting patients with CRPS back to an active fulfilling life and even sending some into remission. It’s a twenty-one day treatment that cost 17,500 and includes everything.

A facility in Cary, NC that is run by a Dr. Pascal who has specialized in the treatment of CRPS for over two decades. He’s been featured in several documentaries about CRPS. This involves a thirty to ninety day stay near his office and costs 18,500 for the first month and 12,000 for each consecutive month. This doesn’t include the cost of living there for the treatment.

Hyperbaric Oxygen therapy has shown to have a positive effect on both alleviating pain and increasing mobility of an effected limb. The costs depend on the number of treatments and it alone will not be enough.

There is naturopathic medicine and osteopathic medicine both of which are not covered by insurance and the expenses involved with these approaches are hard to quantify as is whether they will be effective on their own. Finding those doctors specializing in CRPS, is difficult.

Because I’m now on Colorado medicaid as a result of this I cannot go to hospitals like John Hopkins, Stanford or the Mayo Clinic because I would be paying out of pocket to see multiple doctors and traveling out of state to do so. I’d love to be able to afford to do this but I’m currently unable to.

The bottom line is that every dollar I’m able to raise will go towards recovering my hand, my health and my ability to create my art. I don’t want CRPS to be my story. I want conquering it to be part of my story.

If you’ve read this far, thank you from the bottom of my heart.

FYI

One of my favorite things to do at past art shows was to find one child especially interested in my artwork and give them a small print of their favorite piece. This was THE thing that made every art show worthwhile to me regardless of sales. This little boy reciprocated the gesture the next day by giving me some of his artwork, inspired by mine.