Hi! Welcome to our Team page! JustKeepSwimming!
Thank you for your support!

HI! Welcome! My name is Cass, and I am an 8 year Warrior with CRPS (complex regional pain syndrome), this May 25th. I was 31, going on 32, when I fell down the stairs at work in May 2016 during a fire drill of all things. And I was an ERT helping people! Just terrible luck to fall. A Murphy moment if you will. And in one day my life changed forever. As I'm sure it did for many of you with CRPS. Fortunately, I didn't break my neck or back, like I could have. I severely sprained my left ankle but the pain was nauseating, blinding, and unreal the moment I came to after my accident. (I had blacked out once I hit the platform.) I didn't understand why a sprain would hurt this much and I knew something more was wrong.

Unfortunately, and as a lot of women in healthcare are, I was dismissed immediately as an "overly emotional" woman instead of addressing the very real pain concern. Because this is a rare condition, it is not universally known to doctors, and I was passed around from doctor to doctor until I was finally diagnosed by a neurologist in July 2016, who suspected CRPS (fka RSD or reflex sympathetic dystrophy) from the moment he saw my ankle/leg and my family history of CRPS. My Mom and her Mom (also with SLE lupus), and I all have CRPS in common. All my life, I seem to be prone to injury and to sickness.
After an examination and a harrowing triple phase bone scan (my tech said she had never seen legs turn so purple before and had to double check to make sure it was safe to allow me to finish the test) confirmed his suspicions, he said unequivocally we're dealing with CRPS and you need immediate treatment and attention. After 2nd and 3rd opinions confirming that diagnosis by podiatry and pain management doctors in October 2016, I finally built a team of doctors and specialists of CRPS, who have helped me through my journey.

I realize that CRPS (https://www.mayoclinic.org/diseases-conditions/crps-complex-regional-pain-syndrome/symptoms-causes/syc-20371151; https://www.ninds.nih.gov/health-information/disorders/complex-regional-pain-syndrome)) is rare and therefore unknown to many, and equally unknown is it's destructive nature. CRPS is the highest chronic pain known to science at this time, according to the McGill pain index (https://www.sciencedirect.com/topics/nursing-and-health-professions/mcgill-pain-questionnaire; https://pdrehab.com/what-we-treat/complex-regional-pain-syndrome-crps/; https://fighttheflame.org/what-is-crps). It is a chronic neuro-inflammatory disease, often with an autoimmune component, that once triggered (by surgery or injury) causes 24/7/365 pain until it is put into a remission state. There is only “active” and “remission” status for CRPS. At this time in science and medicine, autoimmunity has no cure, and likewise, there is no cure for CRPS. Early detection and early diagnosis, and then immediate treatment and recovery plan are critical. After the first year with CRPS, remission becomes less and less likely and the more severe a patient will become, as it affects every system in the body, including organs and functionality. CRPS patients require long-term, consistent, indivudally crafted (as it is different for each person who triggers it), and effective uninterrupted care and treatment to even hope to make it into remission.

My story is somewhat tragic becusee it was preventable from being as severe as it has become. Unfortunately, even after my relatively "quick" diagnosis according to most, being in the Federal Workers Comp (OWCP/DOL) System has its disadvantages. I was systematically and unconscionably delayed and denied medically necessary treatment from the getgo and denied the opportunity to make it to a remission state, making it impossible for my team to effectively treat me. The longer you make someone with CRPS wait for treatment, the worse they become. I waited an unconscionable 454 days at one point in between treatments and because of the destructive nature of CRPS, I went from mostly able bodied from onset triggering to permanently disabled in less than two and a half years. After these prolonged delays and denials in treatment (despite letters and recommendations by my treatingphysicians urging DOL/OWCP to treat me), my pain and consequential conditions have gotten worse with each passing year. I had spread of CRPS from my left ankle to the entire leg, then from the left leg to the entire right leg, all the while continuing to work full time.

By 2018, I was confined to a wheelchair and by May 2019, I had the spinal cord stimulator implant. After my implant, I could no longer work and had CRPS in my legs, back and spine. And since then, with COVID and post COVID complications, including a left arm PT injury in 2022, I'm confined to a motorized wheelchair with elevating leg rests out of necessity. My legs turn (STILL!) a dark scary, mottled purple and almost black color within less than a minute of being put down. The blood pooling is extremely painful and causes more pain and tremors, so my legs must be elevated. I now have CRPS spread into my left arm and feeling symptoms of CRPS now creeping into my right arm. I had hoped my condition and my pain wouldn’t get any worse, but instead with each passing year it manages to be worse than the last, and I’ve continued to develop even more “consequential conditions”, including cognitive and physical effects from CRPS, and “systemic complications”. Every part of this story has to be edited, Re-edited, rewritten, over and over, with the help of my friends and family.

Everything in my life takes me longer, no matter the task or activity. Pain surges throughout my body constantly, despite medications and spinal cord stimulator. They do help but are not enought to combat the Lord of the Rings type battles going on inside. A lot of the time, severe tremors have stopped me altogether, and I have to rest and wait until I can come back to it. Tremors and sudden increases in sharp and/or burning pain also interrupt my train of thought and it is hard to get back on track. It is exhausting living with chronic pain. No doubt about it. It's a body prison of pain, relentless and unyielding, and with no restorative sleep, insomnia, and no real consistency in treatments or help, I will remain this way, getting worse as each year passes, until I can make it to remission. It is a scary thought to live with every day that this "thing", this disease inside you, is slowly killing you. And immobility is it's best friend and YOUR worst enemy. It is why it is so important that we understand this disease and how it works to destabilize and dysfunction every system in our body.

After 8 long years struggling to reach remission, I have finally been granted an opportunity for treatment at a pain clinic in Arizona known as PISA (Pain Institute of Southern AZ- they're amazing highly recommend). Sadly, I had to leave home. It took me much sacrifice and pain to get here but I did it. And we're hoping for the best. Not miracles, just improvement. Any improvement would be amazing. Forever Thanks to my Mom and my sister Raza for making that harrowing journey possible. So the good news is I will finally be receiving good care and proper treatment in a consistent manner. Finally! So here's hoping they help! I start May 23. And I won't give up my hopes of remission.

Education, Awareness and a Positive attitude is critical! You must have hope! NEVER GIVE UP!

It may be hard to believe after reading all of this, but I have hope. You must! You must envision your success. Envision your path to remission. Keep fighting. I am fighting tooth and nail to make it to remission and because I understand the mechanisms behind CRPS, I also can help myself as best I can to counter some of the destructive conditions. For example, desensitization is the #1 scientifically and medically proven method of getting to remission. So I desensitize in some way every single day. But again, if we don't have the interventions and help that we need, it's a long arduous uphill battle in mud. I do have hope I will make it to remission someday and I won't give up. I think it's a matter of awareness catching up to medical science around the world. There are already countries namely UK, Australia and Italy who are unlocking these secrets to CRPS. USA has to catch up! We managed to battle cancer and now there are protocols and
treatments and procedures that can be done to help treat patients. And thanks to the studies and medical support, there's a larger success rate making it into remission! Thankfully!

And those of us with CRPS often suffer with more than one autoimmune disease! We need the same awareness and the same understanding of this disease! We need the same willingness to unclock the secrets, to create medical awareness and protocols for CRPS to bring about effective treatments and thrving strategy for CRPS Warriors, suffering endlessly with chronic pain, so that they not only survive this, but THRIVE! This is my hope! And this is why I spread awareness for the CRPS Warriors and our community!

So thank you - thank you to all who are participating and supporting this CRPS AWARENESS WALK and who live CRPS AWARENESS every day! We need you and could not do it without you! And we are all so thankful to have you in our corner, fighting the good fight to release us from these body prisons and find our way to remission. There's no way to sugar coat it. It is what it is. And it is not hyperbole. However, as Warriors, I want to impress upon you how important it is to not lose hope or faith that you will make it.

Never give up! We can choose how we live our lives, and choose how we react to these conditions! Stay positive!

It's challenging, but worth it! Live! Don't let the darkness win! Surround yourself with love, light and laughter and you will find Gratitude and Peace, amidst the chaos!

Love, laughter and gratitude are the cheat code to life.

This was something Brandon (my partner of 18 years) said to me. He said “you can play the game over and over, or win with gratitude!!" And I added love and laughter to that. Because to me, life won’t exist unless all three are in balance. I can’t see my life approach in any other way, despite all the terrible things still happening, including perpetual relentless 24/7/365 pain. Mind perspective is a powerful thing! I owe mine to some stored positivity and resilience and years in therapy with my therapist, but also to ketamine treatments. I highly recommend both, for you need to know how to deal with the chaos that arises when you deal head on with your pain.

An Aside re Ketamine: Ketamine is not just an experience, it’s a journey of self discovery.

That’s why each session in ketamine is referred to as a journey. They will help guide you through it. However, if you do not do the work after each session and reflect and internalize and analyze the how and why you ended up in their clinic in the first place, and only view it as the "ketamine trip", that’s all it will be for you. That's my advice. Do the hard work. Do it for you. It will only help to bolster your experience and what you get out of it. What you put into it, you will get out of it. Some of these things we’re dealing with are truly traumatizing, but that’s why the added benefit of analysis makes such an enormous difference. I went from a very dark place of "how am I going to do this life every day" to "if this is for life, then I better get the best life out of it that I can possibly get!" That is an incredible mind shift. And I am still feeling this way, post approx. 2 years later. Therapy is just one tool in our toolbox, there are others and this is a special one. Use it. Work towards your inner peace. Quiet the chaos.

My team is JustKeepSwimming because we must remind ourselves to do so every day. Just keep swimming. Just keep going. Don't give up! And be there for one another. Love and Support system is key. I am Grateful and Lucky to have the support systems I do in my community: family, friends and CRPS Warriors and doctors that genuinely care about me! Fighting for my care! And Support Organizations! I am Grateful for RSDSA and FightTheFlame and CRPS Warriors Foundation, and many others around the world, and all they do for CRPS Warriors! We must continue to spread the word and never let up until everyone knows this destructive disease and knows how to diagnose it and treat it and beat it!