Not a single veteran of the RSD/CRPS community can say their diagnosis did not change their lives in some way. Many faces uncertainty, job loss, hobbies no longer joyful or even possible dependant on the activity.
But finding life after diagnosis, be it with CRPS, cancer, diabetes, or really anything else, can be there greatest gift we give ourselves. Can change our treatment approach and even our treatment SUCCESS.
While there will still be the bad days, the better days will grow to out number them because we have something to look forward to. Our founder loved the theater. Loved acting. Loved making people smile and laugh.
And for years she thought it was behind her after she was injured. It's been over 10 years since her injury. Is this the life she expected? No. But the life she has now is different, but still good.
Not only did she take on the challenge to create a new way to enjoy her love the theater, but to bring those smiles and laughs to others. She became a podcaster on YouTube for a game called Minecraft as RSDAngelOnFire.
She has grown a small following both here and in her new approach to get hobbies with CRPS. And like us all, she still has her up and down days which means while she's very busy making those amazing and fun videos, she is still one of us. And today is her 8 year anniversary of being RSD/CRPS Doesn't Own Me's founder.
So let's give a HUGE round of applause for Christa and her fight to live by her own advise, that there truly is life after diagnosis!
Life after the diagnosis can be hard. Many spend years fighting only to one day come face to face with the likelihood of progression and depression as their old life becomes a distant option. Well we met someone who faced this and found his inspiration to overcome. He is living our motto, “there is life after diagnosis.”
Evan Karp was 18 and just starting college to be a chemist and hopefully one day a doctor when he developed incurable pain. The doctors didn’t know initially what it was, but thinking possibly some sort of neuropathy had developed. It wasn’t until when he saw specialist in Philadelphia, Dr. Schwartzman, who identified it as RSD.
Evan admits from 18-20 he tried to live life pretending nothing was wrong. But he found himself more and more solitary, to the point he describes his next 6 years as he “gave up on life.” He was living a very solitary life with no purpose, no outlook.
To help him fill the time he would watch television, play games, look through articles online. But he one day he came across article about professional cuddling. He felt that with his only social interaction was with doctors, he saw the positive use for this in his own life.
Now as Evan pointed out, “Pain from walking can be a huge discouragement,” so to have normal social interaction is not always easy for us. So he looked into the services available, and there were only two places available. So after some thought he became determined to try and make it more available to others, even if not for himself.
That is how he started his business, The Snuggle Buddies, in November 2013. He says it only took a few days to get his heart set on it. With a very awkward discussion with his first investor, his mother, he purchased the company’s domain and started the business. Within a few months it was self sustaining and now as he put it, it’s all fallen into place. And now when he speaks with his mother, he said she frequently reminds him of how proud she is of him.
Evan has had RSD (CRPS) for about 9.5 years as of now and is a business owner for the last 2. And as anyone knows owning a business is stressful. But he attributes the forced responsibility from running a business as to how he has kept his depression at bay.
When we asked Evan about his insight about how important he felt touch is for someone with RSD? “Really important as it (the lack of) does add to the depression being without it.” But he pointed out that even just being around people has helped the pain decrease, as there is something more to focus on than the pain.
Now Evan admits, he did doubt it would be successful when he started out. But his secret of success is one we can all learn from. His motivation is that he never wants to go back to the life before the business and being stuck in depression. His life goals have changed, he’s found a new way to live with the RSD. And he’d love to see an expansion plan of the company, in every state/every major city.
When we asked him about why he feels this industry is becoming so popular, he points to the increased role of technology in people’s lives. The lack of need to leave their homes, the decreased interaction with people on a regular basis. Not all of his clients want to cuddle, some have contracted appointments just to have someone to accompany them to dinner. One client went so far as to pay to take two women to Disneyland, which Evan admits he wishes he had been able to go.
His biggest word of advice to our community is know what your doctors are able/willing to try and what they aren’t. He moved from New Jersey to Nevada and his medicine in Nevada has been very helpful. When he went to consider moving back to New Jersey, the New Jersey doctors told him they would refuse to continue his medicine because it is an Alzheimer’s medicine, not a RSD/CRPS medication.
With the condition in both his hands and feet, he does not want to change medications from something
that seems to work for him, to something that might be an approved medication, but possibly not as effective.
Life after diagnosis is possible, as Evan is a great example. We just need to find what we have a passion for, what skills we can still use, and how we can continue to make them work. Don’t give up just because you can’t work somewhere right now. You are still valuable, you are still amazing. You just have new rules to live by.
And because we both of our interviewers use gaming as a therapy, we asked him. Yes, Evan does game, specifically Heathstone, as he points out, it’s not as hard on the hands.