Kristi's Story: Living With Complex Regional Pain Syndrome
My childhood wasn’t the most average. A single child that wasn’t supposed to be possible without the use of fertility drugs, my parents had resigned themselves to the fact that they may never have kids, and then I was born. By seven years old, my family was facing its greatest challenge: my mother was diagnosed with a rare oral cancer that was typical of smokers and tobacco chewers, yet my mother had never done either. The only thing they could figure was many of the men in her life (her father, her father in-law, and her own husband) all smoked pipes; this was before anyone truly knew how dangerous second hand smoke really was, but my mom was the proof.
For me, it was been stressful. My mother and I shared a very close relationship, and the reality of how slim her odds were was terrifying. Even if she survived, they gave her only a few years to live. Between the trauma of my mother’s health, and the fact that where we lived I was a racial minority, my early years were rough. I was picked on in school endlessly. I wasn’t pretty, and the other girls let me know it. I was white, which was the minority, so I was picked on because of that. I couldn’t even find safety with my own race, as the majority of the white kids were rich, and my family was middle class.
By 12 years old, I was suicidal, but I found my savior in a four legged friend – a scruffy older horse. My family eventually relocated and life went on as “normal”. All the ups and downs, the heartaches and breaks - my first husband turned physically violent. The second husband, who left after the war messed with his head, made him realize he didn’t want to be a husband or father. So I raised my son on my own. My family had by now moved to Southern Nevada, and like the Phoenix, I felt reborn.
A new life, a new job… everything seemed to be going well. I even met a guy that wanted to be my son’s dad. I was working a great job building slot machines, my son was getting ready to start school, and my boyfriend and I were looking at a new place, then I got injured on the job. No biggie. It wasn’t the first time I’d been hurt; you play hard, you work hard, an injury is bound to happen. I figured a few weeks off, some physical therapy, and I’d be good as new… but that wasn’t how it went. A few weeks turned into a few months. Braces, injections, but nothing seemed to help – the pain wouldn’t go away. I’d be good for an hour or two, and then the pain would be so searing I couldn’t do anything. There were days when I couldn’t even hold a hairbrush to comb my own hair. I started getting referred to a variety of specialists. Every test came back the same; nothing wrong. Yet the pain persisted.
A year passed with no answers, and no improvement. A crooked workman’s comp doctor would declare that he could find nothing wrong with me, so I was fine. My case was closed, and that was that. Forced to cold turkey quit Vicodin after being on it for a year, I tried to return to work, but after calling in one day due to the pain, I was fired the next day because “it just wasn’t working out”. That’s the bad thing about Nevada – employers can fire you at any time for any reason. Another year – it was now 2 years since the original injury – and the pain was getting worse, and starting to affect more than just the original injury site. I couldn’t hold a job, and my boyfriend was convinced I was faking it. After all, the doctor’s couldn’t find anything wrong with me, so why should he believe me? He called me a hypochondriac, said I was faking it - said I was just being lazy. It was no surprise when he left my son and I.
Two months after he left, a pain doctor I’d gone to see was finally able to give me the diagnosis I’d been longing for, “the life you have is gone. This is your life now.” Sometimes something you long for, dream of, and desperately wish for, is not what you really want. I had a diagnosis, but the disease I have is so rare and obscure half the time when I see a doctor I have to explain what I have. There’s no cure. All they can do is manage the symptoms. It’s been around since the Civil War era, and yet they know about as much about this disease now, as they did then. CRPS – Complex Regional Pain Syndrome. I like to explain it as Fibromyalgia’s big ugly brother. They scary part is anyone can get this at any point in their life, and frequently over the stupidest reasons. I know a gal that twisted her ankle while out hiking… she now has full body CRPS. Oh yes, there’s two types. The first type, or stage 1, if caught right away can actually be reversed frequently, but unfortunately unless you get to a pain specialist that’s familiar with this monster of a disease, the truth is most end up with stage 2. It was 2 years before I found a doctor that figured out what my real problem was, I was diagnosed with stage 2, non-responsive. I always appreciated that my doctor didn’t sugar coat the reality of things. I was reminded to “use it or lose it”, meaning don’t baby the limb or I could end up having to have it amputated. Given it was my dominant arm that was affected, the thought of having to learn how to be left handed was not an idea I relished.
That was almost 14 years ago that I got my diagnosis. Since then, I’ve had to learn to accept my constant limiting abilities. See, I like to create things with my hands. I liked to do leather work, train horses, knit chainmail, regular knitting, sewing, needlepoint… so many different crafting things. Every year I lose the ability to do something else, watching myself, who I was, slip away as the disease starts to affect more and more of my body. Where it started in my wrist and elbow on my right hand, it now affects both my arms, from fingertips to shoulders, my upper torso, and my neck. I have migraines from this terrible disease, but the worst part is the way CRPS affects you. For starters because it affects the nerves, it rewires your brain. That combined with long term narcotic use leaves you in a brain fog. Painsomnia is also not a fun thing. These days my CRPS has started to affect my heart. It’s not uncommon for people with Fybro or CRPS to end up with a slew of other issues, like Dysautonomia, POTS, EDS, and a host of other things. All they can do is try to manage your symptoms. Narcotics, spinal cord stimulators, DRG’s… these are all your front line treatments. Ketamine infusion therapy is another good one, but it doesn’t work for everyone, and most insurances won’t cover it, even though ketamine is an FDA approved drug, and the act of using a medication to treat a host of other things aside from what it was created to treat, is common place occurrence.
While my son has grown up with a disabled mom, I think in many ways it’s made him a better young man. He’s more sensitive to people that need help, and not judging others by the way they look; after all, I get judged on a daily basis because of my invisible illness. My mother, celebrating 40 years since her original cancer surgery, perhaps can understand me the best; we’re both Beautiful Disasters. She has late delayed radiation induced spinal myopathy; a fancy way of saying her spinal cord is disintegrating due to massive amounts of radiation exposure 40 years ago when they used radiation to help treat her cancer. With balance issues and neuropathy in her feet, we joke it takes both of us to make one healthy person. I’m frequently her legs, while she’s my hands, and between us we can manage a few good braincells.
I purchased a large, black standard Poodle to train as my Service Dog. I’d trained one previously, Hunter, and he’d been such a huge help to me. As my vertigo has gotten worse, I wanted help when I was out, and with the addition of my heart causing issues (I end up on the floor a lot when I need to get my tachycardia under control) I knew I needed some help. So at the start of 2021, I started looking for a Poodle puppy that checked all my needs. Enter Dante. He showed so much promise, and when he was out working he was perfect. Every new task he learned like a pro, but when we would get home it became another story, and as time went on things got worse. It became obvious he didn’t want to share. Cats he’d been friends with he now lunged and snapped at. The stress on me started to send my health the wrong way, plus one of our rescues had been diagnosed with kidney disease, and the stress to her health made it difficult to try and keep her stable. I agonized over the choice, but made the right choice for everyone - Dante deserved a home where he could be the only one. I placed him with a wonderful family where he’s the only pet, and now he helps a young lady with her health issues. They’ve been in touch and shared all sorts of heart warming photos, so while I miss my partner, I’m glad he’s happy and fitting in like he’s been there his whole life.
My CRPS also started to affect my heart, causing horrific tachycardia in the summer heat, and occasionally so slow I’ve passed out…. Once while I was sitting in a drive thru. Thankfully no one, not even cars, were injured. Since then, if my heart feels weird, I put my car in park when I’m stopped. Thankfully I have a great cardiologist… to bad the electro specialists sent me to was not interested in helping me at all, going so far as to tell me that my pain management doctors just needed to get my pain under better control, and that would help fix the issues with my heart. I never thought my Apple Watch would become such an important part of my day, it helps me know whether it’s my pain causing problems with my heart, or if it’s actually my heart beating too hard. I’m hoping that 2022 sees some answers, and at least a game plan to handle my heart issues, and whatever else decides to become the new issues as my disease continues to slowly spread and affect more of my body.
When I first discovered the Beautiful Disaster brand, it was the Phoenix shirt I saw first. Many people use the Phoenix as a symbol for CRPS because of its burning sensation – we constantly are reborn from the flames of our own pain. The Angel Collection, with it’s beautiful wings on the back of the shirt, and the appropriate saying, is my other favorite…. If you’ve never read about Spoon Theory, I highly recommend reading it. It’s very incredibly true, except for the fact that for some of us, some tasks take more spoons. Some days showering might be one spoon, other days even after I take my morphine it’s just too much work to try and shower. Thanks to changes in blood flow it’s not uncommon for CRPS Warriors who’s heads are affected to have thinning or complete hair loss, and with the challenges of trying to keep up long hair, I had to chop mine short. There are days I miss my long hair, and envy those with long thick locks, but I realize it’s just too much work for me, and as it’s started to thin it’s just easier to make it look “fuller” by keeping it short and wearing it styled certain ways. Blood flow and narcotics also dramatically affect your teeth – CRPS Warriors are no stranger to broken teeth. It robs you of your confidence, thinning hair and broken teeth, and depression and pain are like peanut butter and jelly; they go hand in hand. Yet, some how, I’ve tried to stay busy, constantly pushing myself to my limits, trying to cling to what independence I still have. People ask me, “How do you do it?” and the truth is you do it because it’s that or become a statistic. CRPS is nicknamed the Suicide Disease, because you get to a point where the pain is too much, and has robbed you of so much of your life, that you don’t want to continue on this way, knowing they’re no closer to a cure than they were twenty years ago.
There are so many sayings that are appropriate to my life: You never know how strong you are, till it’s your only choice. One of my favorites is, “If God never gives you more than he knows you can handle, he must think I’m a bad ass!” These days my son is 18, my mother 74 … they both help keep me going. It may not be the life I dreamed of, or hoped for - it may not even be the life I really want, but when you’ve dealt the cards I’m holding, you either put on a good poker face, throw in your hand, or go all in and live each day cherishing those precious moments. After all, no matter how bad you think you have it, someone will always have it worse than you.
So, thank you for creating Beautiful Disaster. I almost always get compliments when I’m out in one of my favorite shirts. They’re light weight, which is important when you live in the desert, and the fabric is soft … a super big deal given how sensitive CRPS has made my skin, and the sayings and images express exactly how I feel most days and help give me the confidence to put up with all the leers and snide whispered remarks. People may think when I ask for help I’m being lazy, but the truth is I’m just a Beautiful Disaster.