Reflex Sympathetic Dystrophy Syndrome Association

@rsdsa | partner
RSDSA was created in 1984 to help people with CRPS/RSD as well as their caregivers with support, education, and hope.

Redefining Independence After Becoming Disabled

Recently, during a dinner outing with my wife and another couple, I mentioned my plan to try driving again (it’s been several years since disabling neck pain made driving a thing of the past). One friend responded, “Great! You can finally be independent!” There was no ill-intention in her comment. Still, it felt like an eyelash jabbing my cornea. At the time, I just nodded. My “response” came later that evening when I was alone in my head. So let me get this straight: Out of the four adults sitting in this restaurant booth, only three are independent? The three who drive? I don’t think so. The concept of “I did it myself!” is ingrained in us. Just look at a baby waddling toward her parent on her own for the first time. She responds to excitable feedback, and the prideful scene is juicier than those yummy fat rolls on her delicious baby legs. As adults, we still feel joy from solo accomplishments, even more so when we’ve fallen on our tush a few times en route. But what happens when we can no longer do things on our own and our Western value of independence is threatened? How do we contend with the psychological problems that arise from valuing ourselves (and others) based on our learned ideal of self-reliance? In adulthood, our struggle with autonomy often begins with aging. Hearing, vision or mobility changes can disrupt daily activities, sometimes to the extent that we question our own identity. For me, grappling with independence began earlier, smack in the middle of my 40s. Pain from failed spine surgeries and the subsequent onset of CRPS became disabling and, sadly I needed to put my busy psychotherapy practice on hold. I spent days and nights struggling in pain, trying to figure out how to do simple tasks. Helping adults and children had been the focus of my entire career; now I couldn’t even help myself. If I couldn’t cut my own food at dinner, if I no longer had my work and I wasn’t able to drive, what did that mean for me? It meant I was no longer the independent person I had been all my life. At least that’s what I thought in the beginning when grief adhered to me like sap on a pine tree. This grief was dripping with that pin-sharp word my friend mentioned. Independence and I have been intertwined for as long as I can remember. I dug up this poem I wrote when I was 8 years old: Once there was an elfShe climbed upon a shelfShe did it by herself!She helped another elf! This early exercise in self-expression communicates that Little Elf’s mind wasn’t really on the goods awaiting her atop that mountainous piece of furniture. No, she was all about determined self-reliance. It made her feel like she could do anything those characters in storybooks could do; even make her way up a lofty shelf full of books! This desire never changed; neither did her value of helping others. Some elves just know they’re meant to become therapists and help people get perspective on their inner-s(elves). Disability prompted my own quest to re-evaluate life from both an internal and societal stance. I developed a closer relationship to interdependence, but also stayed true to independence. I was able to embrace both by redefining what the latter truly means — and what it doesn’t. I realized independence isn’t driving to an appointment. That’s convenience. It’s not lifting a bag or walking. That’s mobility. It isn’t hearing, or talking. Those are communication modalities. Independence is about personal agency. When we make choices and take action from a place of confidence and intention, we’re in control of our lives. Independent minds assume responsibility and exercise resilience amidst difficult circumstances. As it turns out, I never actually lost my independence. What I lost was a life of relative ease. Grief from this will creep up and jab us all in the eye sometimes, so we must acknowledge it and respond with self-compassion. Only then can we befriend that elf within us who finds creative ways to keep climbing — always lending a helping hand along the way.

Sam J.
Sam J. @skeetaj

What It Feels Like to Dance With the CRPS Monster

Complex regional pain syndrome (CRPS) is consuming. It changes your life. It affects simple tasks and things we all take for granted. I get asked a lot to describe what the pain is like. Whether it’s doctors, clinicians or even people who just want to know. So here goes. It’s fire. And it’s ice. How can it be both? The fire is literally fire. It is hot and it burns. It is standing in the middle of a fire not being able to get out. Ice burning is a little tricker to explain. It’s like reaching your hand down into the bottom of an ice box and digging around for that last bottle. The half melted ice and that icy cold water. But if you leave your hand in too long, it hurts. That’s cold burning. It’s crushing. Your bones are in a vice and someone continues to tighten. It feels like your bones are breaking into a million pieces. The grip gets tighter and tighter and won’t release. There are bugs. Crawling all over your skin. Wasps that sting you, but no matter how hard you try, you can’t shake them off. You search for them but you can’t see them. But they feel as though they are there. Knives tearing at your flesh. Scratching deeper and deeper but there is never blood. A simple touch sends you into a pain spiral. A light gesture causes searing pain. Whether it is a person who accidentally bumps you, a breeze that blows too hard or the material of your clothing, it’s like being hit by a bus. A tissue hurts. A stray hair hurts. I roll my pants up on one side to lessen the effects. I get asked a lot if I know my pants are rolled up…if my legs are cold because I have to wear shorts all through winter. I always get interesting looks when I wear my jeans. I cut a leg off them. It’s easier then trying to roll them up and keep them there. The pain radiates through the rest of your body. Your hip, your back, your neck, your jaw, your teeth, your arm, your hand, your fingers and thumb. Moving hurts. But you have to move. You can’t stay still because that won’t help. You need to move. You push through the barrier and try and keep your face from matching what you feel inside. It changes the way you look. The medications can have side effects of weight gain. The skin looks different and flakey. The hair grows uncontrollably. Contracture pushes and pulls your body out of alignment. The nails grow way too fast. But you can’t shave it and cutting your nails is torture. Twitches and spasms are now a normal occurrence. It hurts. It feels like your muscles and ligaments are being pushed through a paper shredder. If I push too hard I feel this awful sensation and all of a sudden my head will sharply jerk from side to side. Sometimes it lasts for a second, other times longer. The more I fight with it, the worse it becomes. CRPS is a monster. It shows no mercy. It doesn’t care if you have plans or deadlines. It doesn’t care that you are exhausted and just want to sleep. It comes out of nowhere like a figure hiding in the shadows of a dark alley. It is relentless. It shows you how strong you are, even when you don’t feel strong. You have no choice but to face the demon head on. It’s unpredictable. We can’t predict what will set it off, sometimes the simplest of actions can cause an intense reaction. What I did last week, chances are I can’t do them this week. It doesn’t make sense. All you can do is fight the monster. Try to duck when it throws punches and do what you need to do, in order to cope with the pain when the punches collide with your body. Don’t give up. Stay in the fight. Getty Image by Grandfailure

4 Ways I Can Better Honor My Mother as My Caregiver

As a patient who has been living with a multitude of painful chronic illnesses for over 15 years now, I have had to reluctantly rely on caregivers. Being a highly independent and self-sufficient person my entire life (even living in my own apartment at 16), this has been a very difficult pill to swallow! The most pivotal caregiver and unsung hero in my life has been and still is my mother, Donna. So on this Mother’s Day of 2018, I honor her! Further, I will share some lessons learned about honoring the caregiver(s) in your own life. Throughout my entire 20s, my focus was on my upwardly mobile and successful business career. But when I experienced a life-changing spinal cord injury during an epidural steroid injection procedure that went wrong, and was subsequently diagnosed with complex regional pain syndrome/reflex sympathetic dystrophy syndrome (CRPS/RSD), and additional chronic medical issues, I was stopped in my tracks! Everything I had worked so hard for was gone in an instant and suddenly I needed my mommy – in a big way! Yes, my soon-to-be husband lived with me at the time, but I wanted and needed my mom the most! Even though my mom had a demanding full-time job at the time, she jumped right in and sacrificed everything to be there for me. Along with my husband, she went to doctor’s appointments, came over and helped me, and just simply held me and told me it was going to be OK – even though none of us had any idea if it would be. We were all scared and confused – we knew it was bad, but certainly didn’t realize the extent of the far-reaching medical journey that was ahead at that naive point in time when CRPS/RSD was even less known than it is now. Not only were most doctors unfamiliar with this monster of a disease, but there were no Facebook or support groups, nor was there much viable information on the fledgling internet as to what it all meant. So we were truly on our own – my mom and my then-husband as my primary caregivers – and me. A few years into my medical journey, I ended up getting divorced (not because of my medical issues). After my divorce, my mom was my primary caregiver. Although I still lived alone, I was unable to drive – for almost 10 years. I had to use a wheelchair and walker a lot of the time, and similar to many CRPS patients with uncontrolled pain and symptoms, I rarely left the house, or even the bed, for many years. I needed help – and a lot of it. It was a confusing and scary time for both my mom and me. I was in so much severe intractable pain, with changing and devastating symptoms and new diagnoses, along with the significant loss and grief that surrounded my “new normal.” Because of all this, it was hard to focus on the fact that my caregiver was also going through the same life-changing loss and grief I was – she just didn’t have the physical piece. But she was watching her once vibrant and independent daughter being reduced to a shell who didn’t necessarily want to even exist anymore, given the amount of physical pain I was in. Those years were obviously very hard on both of us and I know many patients and caregivers out there can certainly relate. Knowing what I know now, given that my pain and symptoms are much better controlled and managed, what would I have done differently to “honor my caregiver?” 1. Communicate and acknowledge her pain. I was so wrapped up in my own struggles, crisis and needs, that I rarely took time out to check on my mom or ask how she was handling all of this. I was also naive to think that it wasn’t affecting her greatly because she wasn’t experiencing the physical components, which was completely false. She was and still is married, and was working full-time, yet gave all her extra time and energy to me. Inevitably this put a strain on her responsibilities and other relationships, as well as ours. Needless to say, we developed some friction and resentment towards each other, which was merely hurt, fear and frustration with the situation, manifesting as anger. So it is important to communicate with your caregiver(s) – to check in and ask how they are doing. They need to express their feelings and pain too, as they are struggling right along with us. So many lives are impacted from the affects of a chronic illness. Often times, household dynamics and responsibilities shift, which necessitates spouse caregivers take on a whole new set of tasks that may be foreign to them. Children may need to step up household chores as well, and may act out as a result. They can also be frightened of what they don’t understand, especially when it comes to a parent dealing with medical issues. It is important to be cognizant of how your medical crisis is affecting loved ones, as well as yourself, and not shy away from discussing it or simply asking questions. Some caregivers aren’t comfortable discussing their feelings and will be more likely to withdraw or deny them, and that’s OK too. If appropriate, it may help to get a counselor involved, as dealing with the stress of caregiver and patient (and other) relationships has many different facets that we as the involved parties don’t always understand. 2. Talk about things other than my medical situation. When we are consumed with a medical crisis, it can be hard to think, let alone talk about anything else. Don’t forget that you and your caregiver(s) can find other things to discuss – and you should. Ask him or her about their day, talk about current events or just watch a movie. It can bring much needed relief for both of you to take a break from discussing your medical situation, and keep in mind it can also distract your pain and symptoms, as well as your caregiver’s worries, to laugh and talk about something – anything else! One of the things I remember when I was at my worst is my mom telling me she loved to see me smile and laugh again. No one wants to constantly talk about negative and depressing things, and sometimes it just helps to feel normal through a little laughter. They don’t say “laughter is the best medicine” for nothing! 3. Thank and appreciate her more often. I don’t know what I would have done without my mom – both then and now. She would help me with errands, laundry, cooking, driving me to the ER and countless other appointments (in and out of town), finding other caregiving assistance and basically anything else I needed, without ever asking for anything in return. In a sense, I took this for granted and put a lot of pressure on her because she was my mother. I could have thanked her and told her how much I appreciated her way more than I did. I realize not everyone has a mother or caregiver as dedicated as I do and it hurts me to think my focus was turned so inward on my own pain that I just assumed she would be there for me because she was my mother. She has shown me the value of true commitment, loyalty, forgiveness and unconditional love, and I tell her how much I love and appreciate her and thank her now probably more than she wants to hear! 4. Encourage her to take better care of herself. As most patients know, when our pain and symptoms are unmanaged and out of control, we become more focused on trying to “fix” or cure them as opposed to trying to live with or manage them, which is an oxymoron when dealing with an incurable chronic illness. The desperation sets in and our worlds become smaller and smaller. It’s as if we develop tunnel vision and cannot see anything or anyone around us who is also struggling because our struggles are worse, right? Wrong! For lack of a better term, it becomes all about us! We become self-consumed to the point of self-pity. And in this downward spiral, we have a tendency to drag our caregiver(s) down with us. Of course, this is not any more healthy for them than it is for us. Ever heard the term “misery loves company?” Well, I think at some points along the way this quote fits perfectly. It’s as though the fear and stress of our medical issues causes us to grasp ahold of those closest to us and not let go. We are scared if they go anywhere or spend time with others, or have fun they will leave and never come back and we will be all alone. After all, why would someone choose to be around the negativity and misery of chronic illness and pain when they can live a normal life? As patients, this is the tape that plays over and over in our heads and makes us cling to those we love in times of need. We don’t want to be burdens on anyone to the point of sometimes pushing them away, but we also don’t want our caregivers to abandon us. It’s a dichotomy. In reality, getting away and taking breaks is what caregivers need the most! In order to be healthy and effective, caregivers need to take care of themselves first before they can take care of us. So encouraging our caregiver(s) to live as normal a life as possible is exactly what we as patients should do. This means encouraging them to go out with friends, go on vacations, spend time in the spa, etc…Even forcing them if need be! When someone is acting as a primary, basically full-time caregiver (because I’ve been told even if they aren’t physically there with the patient, most likely they are thinking and worrying about the patient), it is exhausting – not only physically but mentally, emotionally, spiritually, and for some, even financially. Caregivers need to ensure they do not end up as a patient too! As they feel refreshed and healthier, caregivers will become better equipped to deal with the physical and emotional rollercoaster of the patient’s needs and that in turn will have a positive impact on the patient. Of course no one would choose to have the role of a caregiver, any more than we choose to be a patient. They do it out of love, duty and commitment to support their family member so we don’t have to fight the chronic illness battle alone. They want to help and it gives them peace knowing they can make our lives a little easier. Knowing they have dedicated themselves to the pivotal role of a primary caregiver should give us comfort that they will be there for us, even if they would have more fun doing something else. So on this Mother’s Day and everyday, I honor you mommy, and all the other caregiver warriors out there who make living with chronic illnesses and pain possible through your undying support, friendship, advocacy and unconditional love. I am forever grateful. Happy Mother’s Day! Getty Image by fizkes

Sally Fowler

The Gifts Baseball Photography Gave Me When CRPS Entered My Life

Tell anyone that you live with a condition that makes you feel as if you are engulfed by flames every day, and they would assume your condition is a curse, through and through. To some extent, they would be right. Living with complex regional pain syndrome (CRPS) is a hefty burden to bear. My nervous system interprets all incoming stimuli as a red alert pain signal, be it light touch, sound, or genuine trauma. In addition to this, my brain spends so much time normalizing pain for me that it doesn’t have enough energy or focus to function like a healthy brain. This means it often drops the ball on other systems, which causes brain fog, loss of limb awareness, muscle spasms, tremors, and more. I live at a daily pain level of an eight or higher, and need the full time assistance of a service dog in order to function on a daily basis. Now that you know all that, you probably think there is no way that I could possess anything but hatred for my condition. Except I don’t hate it, not completely. I hate the pain. I hate when the spasms make me drop a cup. I hate that my life as a horse trainer got ripped away from me before I even had a chance to make a name for myself. I hate that the constant pain and unpredictable flare-ups means that it isn’t safe for me to drive. I hate that I’m 25 and already feel much older than my age. Despite all that, though, getting CRPS has given me several gifts that I never would have experienced had it not been for the pain. One gift stands out among the others, and that’s what I want to share here. Baseball. If you had asked me how I felt about baseball eight years ago, I would’ve told you that it’s a boring sport and a waste of time. If you ask me today, I’ll tell you a piece of my soul will always belong on a baseball field. I’ll tell you that I wouldn’t be who I am today if it weren’t for baseball. And I’ll tell you that my four years with baseball will always be some of the best years of my life. In 2011, I stopped riding horses because the pain from my CRPS was too much to bear while riding and caring for horses. My whole life was about horses. I travelled 800 miles across the country to attend an equine college, I spent probably 12 hours each week at the barn, if not longer, and most of my friends were horse people. When I chose to stop riding, I felt like my heart had been shattered. I didn’t know where to go, what to do, or what to hold onto. To make it easier for me, I also stopped going to the barn, and didn’t want to hear my friends’ stories of good or bad rides. A few understood, but most of them shut me out for not “riding through the pain.” They told me I was weak, that I was a coward for not dealing with “a little pain.” I was abandoned by the only world I knew. Around the same time, the marketing department at college started having me shoot sports games on campus for work study money. I grew up doing action photography of horses, so sports seemed like a good fit. The first baseball game I attended, I shot from outside the fence. I knew nothing about baseball. I didn’t know what positions to shoot, or where to look for action shots. I didn’t even know what constituted a “point.” I was completely baseball illiterate. I turned in my shots to my supervisor the next day, and she was blown away. She shared my photos with the head of the athletic department, who was also impressed. I had stumbled into a natural talent. My timing was excellent, I captured the emotions of the players, and I shot stationary position photographs that were perfect for news releases. Before I even knew what was happening, I was placed in the dugout with the team, shooting every game that season. Baseball became my new home. I bonded with the players over lunch, at practice, and at games. There was no where else I’d rather be. If the team had assigned study hall, I was sitting right there with them writing papers, reading books, or editing my photos. If there was outdoor practice, I’d be in the dugout or outside the fence trying out new angles, new lenses, and laughing with the guys. Over the course of four years with the team, I came to see many of the team as my brothers. They knew I was “injured” but that didn’t matter to them. What mattered to them was that I showed up, put forth my best effort, and was a damn good photographer. I caught moments of their college careers that they will forever be able to look back on and remember the good ‘ol days. At that time, I didn’t have a diagnosis. Doctors were stumped. I didn’t even have medication to help me push through the bad days. I had ice (at the time I didn’t know that was a bad call), a wrist brace, a playlist of flare-up music, a team of brothers, and a whole lot of grit. On any given game weekend, I spent 14-16 hours total (Saturday and Sunday) shooting doubleheaders. The pain was only in my right wrist and shoulder at the beginning, but by the end of my baseball time it was in my ribs, back, neck, and jaw. Since I couldn’t ride anymore, I decided I wanted to be a professional baseball photographer. In my free time, I studied the game photos of other professional photographers, and then would try to duplicate them as my way of learning. I asked our baseball coach to help me find baseball internships for the summers, and he did. I held two photography internships in college, one the summer after my sophomore year, the other after junior year. Both were incredible experiences, but the last one was the most profound for me because it wasn’t collegiate level…it was a professional team. It was there that I worked under a boss who was compassionate towards my pain condition, I made a new friend who became a sister to me, and found my ultimate happy place – shooting pro baseball from the roof of the stadium. All I have to do is close my eyes, and I am transported back to the roof at sunset, looking out over the entire field, and feeling totally at peace. For four years, I dealt with the pain, and had experiences that can never be matched. While I shot for a total of three teams, my heart will always belong to my college baseball team. They are who I started with, who I grew with, who taught me the most about battling, and who helped me figure out who I was without horses. Coach told me once that if he could pay me, and keep me with the team forever, he would do so in a heartbeat. I made a little money selling photos to the team, but it was never about the money for me. Shooting through the pain, and dealing with the flare-ups later were all worth it to feel alive and whole for a few hours each day. Remembering my time with baseball is remembering the laughter, the walk up songs, the goofy grins the players would flash me, the sarcastic comments in the dugout, all the foul balls that almost killed me, the concussion on the first base line that I kept shooting through despite the pain, staying up until 3 a.m. editing photos, all the miles I drove to be at away games, the taste of sunflower seeds on my tongue, the smell of fresh cut grass, the sound of turfs clacking on the concrete floor of the dugout, and the feeling of absolute calm right before a game started. It’s remembering the games we lost, and the games we won by a landslide. It’s remembering the times I was called a “good luck charm” or the first time I was called “a part of the team.” It’s remembering the day coach publicly recognized me as part of the team on senior day, when he gave me a black, Louisville Slugger with my name and position as team photographer engraved on the bat. It’s been years since I shot baseball. After college I was offered an unpaid position shooting for a AAA minor league team in North Carolina, which was a huge deal. The public relations director wanted me based on my portfolio alone, and for a few weeks I rode the high that came with such an incredible offer. After much thought, I reluctantly turned it down because the pain was spreading and growing in intensity. I knew I would never have been able to withstand the pressure of shooting pro while juggling another job and severe chronic pain. By the end of my baseball career, I could barely hold my camera up for 30 minutes, and lost the quick reflexes for freezing the jaw-dropping action shots. Looking back, the pain was worth it. The spreading, the growth of intensity, and the loss of who I used to be as a horse trainer were all worth it because baseball gave me more than I dreamed possible. Baseball taught me a lot. I learned great stamina for shooting. I learned to leave everything behind when I entered the field, because the right here, right now was all that mattered on game day. I learned how to internalize the pain, and then shut it out. I began learning how to accept help. I learned that I am more than a sum of my horse skills. I learned what it feels like to have brothers. I learned how to smile again. I learned how to battle. Before baseball, I was raw, angry, and broken. The game, and the teams I worked beside sanded down my rough edges, restored my hope and ability to laugh, glued me back together, and showed me that I am capable of anything – especially the unexpected.

The Other Side of the Opioid Crisis

I have complex regional pain syndrome (CRPS) and I honestly feel like I am at war with my own body, and I never know what will happen from one moment to the next. There is so much going around about the “opioid crisis” and how such and such drug is being over prescribed, that they are forgetting about those of us who use them to try and live a normal life. Am I proud that I have to take them? No. Even some medical professionals look on us chronic pain patients like we are just making it all up to “get high.” Have I tried going without and using alternative therapies? Oh God yes! I have been through pain clinic after pain clinic, seen so many people that I honestly can’t recall them all. Have you ever stuck your arm in a hot deep fat fryer? No? How about had some hot fat spit out of the pan and onto your skin? Imagine that, but from finger tip to shoulder. Then imagine that painful cold when you have had your hand in a freezer too long, a cold burning. The pain can switch from one to the other, and oh it does! One or the other, most people can deal with easily, but what would you do if it never eased? If it was just one type of pain to the other? My nerves never rest. Since it started, I haven’t had a minute of peace, a time when I do not feel the pain. I lie about how much pain I feel, I down play it. Like others we get looked at funny if we rate our pain an eight out of 10, or higher. Often told that if it was that we would be almost non-functional, that we should be physically sick with pain. I don’t want peoples pity, and I rarely ask for help. The painkillers I am on knock my pain down to maybe a seven, where as I very often start my day at a nine. I could go without my painkillers (I have tried), and am one of the lucky few to only get a slight amount of withdrawal symptoms, if any at all. But the pain!…Oh, the pain! The burning, the stabbing, twisting pain. I honestly wouldn’t wish it on anyone, and I mean anyone. The day that they tell me that I can not have any pain medication, would probably be the last day of my life; I can imagine so many other people would be the same. When even the air brushing against your arm can cause a pain sharp enough to make your heart jump, you know it is too much. To those of you who know me: You see me with a smile, but what you don’t see is how much this pain is destroying me inside. I joke and go out of my way to make someone else smile, to try and make their day a little better, then maybe, just maybe my pain is worth it. I am struggling a lot more lately. The pain has started traveling from the fingers of my right hand, all down the arm to the shoulder, and down the right side of my back. It is in my neck, my left hand and wrist. My fingers lock, my muscles and joints don’t work properly. Every day is a repeat of the pain. There are those of us, classed as “chronic pain patients,” who actually do need these painkillers and other medications. For people like me, we need them to just get out of bed – hell, to even think of getting out of bed! Doing the simple things take so much out of us. I often get told “I don’t know how you manage.” I have no other option. I either wither away and die, or put my mask on. Not a great choice, but it is all I have. You take away my painkillers, you take away my life. Getty Image by fizkes

Meghan Bayer

What Spring Break Is Like for Someone With Chronic Illness

As March comes marching on in, this means that college students are about to make their travels to exotic spring break hotspots like Miami, the beaches of Cozumel, Mexico or hit the slopes of Colorado and Utah for some fantastic skiing. Some may head home for a visit and some may take an alternative spring break service trip. That’s probably the plan of a typical college student. Drinking, partying and listening to loud concerts on the beach or hitting up the local restaurant for some partying after skiing. What I described above won’t be me or many other college students with debilitating chronic illnesses. Some may use the week for a planned hospitalization to regain control of their illnesses. Others with chronic illnesses or learning disabilities may use the week to catch up on work from the semester they are behind on or to get ahead in case something happens. For some, there may be a surgery/procedure and a recovery involved. There will still be medications that need to be taken up to four times a day or more, physical, occupational or aqua therapies, important appointments scheduled months in advance, weekly infusions and other IV treatments necessary for maintaining the “status quo.” If one with chronic illnesses chooses to neglect the necessary treatments for even a few days to a week, the payback can be catastrophic and potentially even result in requiring medical leave for the remainder of the semester. For me and many like me, it’s just not worth it. Let’s entertain the idea that I or another person with currently uncontrolled, debilitating chronic illnesses had the physical ability and financial resources to go and enjoy a spring break vacation like the typical college student rather than a “staycation” at home or college. How would I pay for it? College students are notoriously “poor” until spring break comes around and paying for all the shenanigans, alcohol and other excursions comes around. With treatments and medications vital to life not covered by insurance that I can’t or can barely afford, where’s that $2000 for a cruise through the Caribbean going to come from? I surely don’t have that kind of money laying around and even if I did, I’d be spending it on treatments, medications and copays. That would cover a fair amount of copays or a few months of medications for me, bearing in mind that that is just the cost upfront and more expenses will be accumulated as the week goes on. I’ve just described my week as a person with over 20 uncontrolled, debilitating and progressive chronic conditions. This week, I’ll take my medications, get my weekly treatments, do my physical therapy exercises, try to get ahead on my summer internship and homework for the next few weeks ahead, while trying not to overdo it and set myself way back. Already, I can say I’ve spent more time attempting to catch up on lost sleep from weeks and weeks of poor sleeping conditions. Hopefully this all will be enough for me to finish my semester strong and with a 4.0 despite the circumstances I find myself in. No matter how much I want to take a vacation over my week-long break, there won’t be any alcohol over my spring break or loud music, migraine-inducing headaches. As a senior, I realize this is my last opportunity to partake in the legendary “college spring break” and that I haven’t done so thus far. Honestly, I’m OK with it. It just simply isn’t safe for me to have my medications and alcohol in my system at the same time. But still, who really wants to spend the week in a hungover state with a wicked headache and a bunch of vomiting thrown in there? Not me. I have enough vomiting and headaches from my illnesses alone, I don’t feel the need to throw gas on the fire. I realize this won’t be everyone’s break, but it is a common, stereotypical spring break and it is one that many with chronic illnesses won’t be able to enjoy. Now, individuals with chronic illnesses will find their own ways to find joy in the midst of the situations and circumstances they find themselves in. We simply have to for the sake of our mental health and enjoyment of life. This may be as simple as spending time with family or catching up with a friend from high school that has decided not to take a vacation. This article isn’t intended to gain pity, but rather to inform why you may not see your friend with chronic illnesses joining you on your adventures. Trust me when I say that many of us want to, but in many cases, it would be severely detrimental to our health.

Bailey Martens

Dear Caregivers, I Took You for Granted

I grew up in and out of the hospital. It was normal to have my caregivers bring me something to eat or drink only for me to not want it. It was normal to need help with getting dressed and getting showered. I now realize I took you for granted. When I moved out on my own and started university I quickly realized that having nurses that were friends and spending my extra money on new treatments and medical devices was not normal. Their mothers and fathers did not drop everything to save their child’s life day after day. You did more than you bargained for. My fridge is fully stalked with all sorts of clear liquids: Gatorade, apple juice, and filtered water take up the bottom shelf. But walking the two feet that it takes to get a sip is exhausting. All I want is a mom to swoop in and hand me a glass with a straw as I attempt to stay hydrated. Someone who knows when to let me be to heal and grieve on my own, and when to lay with me. My parents could anticipate my needs before they happened. A few years ago, I was too sick to walk down the stairs from my bedroom to the dining room for Easter dinner. My dad told me I wasn’t allowed to spend Easter alone. After feeling defeated and angry I heard a knock on my door. My dad had moved a collapsible camping table into the hallway outside my room topped with a large feast. So often people with profound health needs or disabilities cannot get to the table but it is the extraordinary caregivers that move a table up a flight of stairs so that everyone has a seat at the table. There are those of you who try so hard to be those people but it is exhausting. It is draining to teach you how to react to someone being sick. It is embarrassing to show the less than glamorous parts of my diseases. But thank you for trying. The caregivers are the unseen heroes who keep their sick friends and family comfortable and alive. Thank you for loving us so well. Thank you for the selfless act of loving us when we are at our worst. We love you. Getty Image by Jupiterimages

Marni Cartelli

Why I Owe My Friends an Apology After My First Year of Chronic Pain

I want to apologize to my friends. For the first year of my disease I was mad them all. I was mad they didn’t come and visit. I was mad they didn’t understand the pain I was in. I was mad that they had no idea how close to breaking I was, or how my much I wanted to not exist. I thought none of them cared. I am sorry. I know, that sounds strange that I am apologizing for all of this, right? Well, it is my fault. I didn’t let any of them in. It wasn’t fair of me to assume any of them knew that I was struggling with beyond having some sort of complications with a shoulder surgery. They all had their own busy lives, and I know had I asked, they would have been there for me at a moment’s notice. I just never asked. When they would ask how I was feeling, I did myself no favor by saying “alright,” because I wasn’t feeling alright. I thought that was what people wanted me to say. I thought that nobody really wanted to hear what I was going through. I think I was afraid that if I told anyone what kind of pain I was still in or that I was still taking pain medication, they would all turn their back on me and think I was just an addict. However, something wonderful happened. One day, I stopped hiding everything. I told them the truth. I explained about my disease, complex regional pain syndrome. I told of all of my past struggles, of the expected struggles to come, and of my limitations. I explained why I don’t show up to things, why I cancel last minute, and why I feel so lost now. Everyone listened, some cried with me, others laughed with me, and today the majority support me the best way each one knows how. They continue to make efforts for me to be a part of their lives. This is important, it is what keeps me from feeling so isolated and alone when the pain keeps me from being able to attend events. If I can’t make a party, someone is sure to tell me all about it or send me pictures from it. They constantly remind me that a disease does not break the bonds of true friendship. It is my promise to each one of them that I accept them for who they are, just as they do me. I think this is an important lesson I learned. As a member of the invisibly disabled community, I want people to accept me for who I am and what I can give. I have to be willing to do the same. I have learned that not all of my friends can support me in the exact way I would like, but they support me in the way that they can. That is more than enough for me. I found people who truly understand what I am experiencing in support groups, both in person and online. I found by utilizing these groups I stopped looking for that understanding (which will never come) from my friends, and I could just accept the love and support they offered. I encourage anyone struggling with balancing friendships and their disease to talk to their friends about this struggle. I did. If they are your friends, they may not understand the disease, but they will do their best to understand your feelings. I speak from experience. I lost some friends over this disease, but I didn’t need those types of “friends” in my life anyway. I can promise, the relationships which will remain will more than make up in quality for any quantity you lost. We want to hear your story. Become a Mighty contributor here . Getty image by aradaphotography

Marriage and Complex Regional Pain Syndrome

Ten years ago, I started dating my now-husband. We were each 14 years old. This was less than a year after my complex regional pain syndrome / reflex sympathetic dystrophy diagnosis. As a matter of fact, I was still on crutches when I started dating the boy with the blue mohawk. At that point, I didn’t know the extent CRPS/RSD would actually impact my life. I know the doctors told me I’d never walk again, but my physical therapist was determined to get me there. Now that he’s stuck with me for all of eternity (or so I tell him every day), I figured I’d ask a few questions about what it was like learning about CRPS as I did, while being able to add my own commentary. We have received a lot of requests for advice or for a story on how we “make this work,” so here we go. Note: This article is not meant to say it is more difficult to love someone with CRPS, or to say we are not as worthy of love. It is to simply get the mindset and thought process of a significant other as they see all of this happening to a loved one. Samantha: OK, so you knew I was at least some form of injured when we started dating Do you remember me telling you about RSD (now CRPS) at any point of the beginning of our relationship? Aaron: Yeah, I think so. I kind of had no choice, I’m pretty sure you had crutches at that point. But I don’t remember you specifically saying “Oh, I have RSD.” Samantha: I didn’t talk too much about CRPS/RSD then because I was too preoccupied with trying to figure out what dating was. Ha! Do you think I have changed in any way now that I openly discuss the diagnosis? Aaron: I mean, yeah probably. With me, you realized I wasn’t going anywhere after you told me. You’re much calmer when you explain it to people now, although I’m sure you’re sick of the question. [Sammie’s note: I’m never sick of the question. I’d rather educate people than let them make assumptions.] Back then, you didn’t know much about it and would get overwhelmed. Now, you just answer people’s questions and try to educate them. Samantha: I remember a few years into us dating, when my CRPS started to spread, you looked everything up with your sister to try to learn more. What do you remember about that? Aaron: I remember being on the RSDSA site. To be honest, it scared me. I was thinking everything would just be a mess forever and the actual flare would last forever. That was overwhelming. But I wanted to know what I could do to help, even though there wasn’t anything specifically I could do other than support you. My sister was equally as overwhelmed. Seeing that it could last the rest of your life was scary to teenage me. [Sammie’s Note: I have gotten to manageable levels of pain, however I do get significant pain flares that set me back. Ones I didn’t even anticipate as a teenager.] Samantha: Through this entire process, what has been the most difficult part of dating me? Aaron: Seeing you hurt or sad is probably the worst, knowing there isn’t much I can do at all. I can deal with everything else, as long as I have you. There isn’t anything that we can’t get through. Samantha: What has being with a physically disabled person taught you more about the world or about disabilities as a whole? Aaron: People can be scummy. They don’t have respect for others. It gets really annoying when people just don’t care when we go out when you’re flaring and they step in front of your wheelchair or try to move you. It makes my blood boil. Don’t get me wrong, there are people with good intentions, but the bad sticks out so much more. You don’t tend to notice the good ones. You remember the people that let the door close, let the elevator go, shove into the wheelchair, and things like that. [Sammie’s Note: The video clip below, from the TV show “Speechless,” is something that happened to me in a Yankee Candle one day.] Samantha: What is something you do to handle the stress and pressure that I put on you? How do you unwind so you don’t break down? Aaron: Usually video games. That takes me to another world. But I found my purpose in life. My goal in life is to make your life better. Whatever I can do to help you is my end goal and makes me feel better. I’m not “dealing” with it, it’s called love. Knowing I’m even just making you smile for a moment is enough, truly. But everyone needs an out. A healthy out. That’s why I play video games. And that’s why I go fishing. Even if you don’t believe when I caught a huge fish. Samantha: Haha. I always believe you. What have you found the scariest part of CRPS to be? Aaron: Complete lack of control. Like, yeah some of the medicines help you not flare up, but if you stub your toe, who knows if you’ll be able to walk for the next month. [Sammie Note: So, I know I’m pretty fragile and I forget that, plus my toe is a magnet for wall corners, sorry Aaron!] Samantha: Based on what you’ve seen from me, how would you describe CRPS now? Aaron: I usually just explain it as a nerve condition. I could be wrong, but I say imagine if you broke your arm and your body reacts to that like there’s a problem. But with RSD, it just does that even though there isn’t necessarily a real issue. Your body is treating you like you’re broken and it causes your brain receptors to think there’s pain. It’s all overreacting. It’s like an allergy to pain, but neurological. Samantha: What would you say to all of the significant others of people with CRPS out there? Aaron: If you love someone, you should be willing to do whatever you can. Even when there’s nothing you can do, you should try to make them smile. However, if you can’t stand the heat, get out of the kitchen. Don’t leave someone hanging on for your own selfish reasons, just to leave them high and dry. Trust me, their heat is much worse than the heat in your kitchen. ***** What I learned from having this discussion with my husband is that he’s in this as much as I am. I understand why he tries to play defense when we’re out in public and someone gets too close to my left side. I understand why he panics when I faint and fall. While he doesn’t experience the physical pain, he experiences a lot of the emotional pain, especially since he is so eager to help. One thing we’ve had to really focus on is that he cannot compare his pain to my pain. Sometimes he doesn’t speak up when he’s in pain because he feels as though it is nothing compared to what I live with. But pain is relative to each individual. He’s allowed to be in pain and not face judgment for saying he is. To answer the question about finding a significant other that fights instead of flies, I’d just say that you have to dive into it. Date people, but be open with them. If they run on the first date, they weren’t worth your time. There are some fantastic men and women out there that are willing to join your team. Anyone that does not want to stick it out misses out on how fantastic you are. We want to hear your story. Become a Mighty contributor here . Getty image by Yobro10.

When Someone Offers You a 'Cure' for CRPS

It’s easy to assume that all people that have been diagnosed with complex regional pain syndrome (CRPS) want in this lifetime is a cure. That’s why so many of us focus on awareness, awareness events, fundraising, and even on keeping up with the latest research. There is nothing more we want than to be the “old” us – the ones that can hop, skip, and play with our dogs, children, grandchildren, nieces and nephews, without being in excruciating pain and facing all of the consequences that come with it. (Please note everything in this article is my own opinion.) Another common thing is that many of us have been told that someone has a cure. Most of the time, this is coming from a friend on Facebook, Twitter or Instagram, who said that they lived with chronic pain until they tried XYZ supplement and did eight hours of hot yoga a day, followed by four hours of pure barre. While I think it’s absolutely fabulous that this works for these people who lived with a different form of pain, I understand that these things may not work for me. The thing about CRPS is that what may work for me may increase someone else’s pain level with CRPS. If CRPS is that fickle within itself, it definitely can differ from other chronic pain conditions. The other day, I was on Facebook when I saw a post from a man that was in one of my absolute favorite bands. He left the band and started his own band, but has mainly focused on his healthy lifestyle since leaving the band. He said that he was going to do a livestream at 8 p.m. and was going to tell people how they could get rid of their diabetes, asthma, anxiety, depression and chronic pain. I believe my reflex was to roll my eyes a bit. I looked at the comments and saw him going to war with a woman living with Ehlers-Danlos syndrome, which is another chronic pain syndrome I have. He continued to empathize that if this woman did what he said (and had started doing it in the womb apparently), that he would be able to get rid of her pain forever. People continued to remind him he wasn’t a medical doctor, but he went on. I was going to watch the stream, but I couldn’t. Now, I’ll admit, if I’ve heard that a certain supplement, diet, or fitness routine would help my different conditions, specifically my CRPS pain, I’ve tried it. I always consulted with my doctor first (who would tell me I could try, and he also told me some of them were just outrageous). I understand that “clean eating” and movement over time can help ease pain and inflammation, but it is not a cure. For the longest time, things like this would upset me to no end. To be promised a cure, only to find out it was someone trying to sell something or trying to push their views on me was incredibly unsettling. Through my experience with CRPS, I’ve done everything I can to hold on to every ounce of hope and positivity I have. I don’t think that I’m alone when I say that false hope hurts more than hope that hadn’t existed initially. One thing I will say about people that suggest their own cures is at least they are trying. They see that I’m in pain and that I’m having a difficult time and they want to help, so they suggest something that they’ve tried, heard about, read about or seen a YouTube advertisement for. So, being thought of like that is enough to provide some hope, even if what they’re suggesting directly doesn’t lead to anything. Think of it like this: If someone is suggesting something to you, they’re not only thinking of you, but thinking of the condition. That can lead to more awareness and increased interest, which will certainly one day take us even closer to a cure. So, actively keep that hope going. You’re opening up a dialogue that a lot of people wouldn’t have had if they didn’t know you had CRPS. Woohoo for unintentionally making a move towards positive change. If people suggesting these “cure alls” to you really upsets you, please say something. Even saying something along the lines of, “I really appreciate that you’re thinking of me and CRPS. But right now, my doctor and I have a plan and we’re doing what we can. I’ll mention it to him/her, but right now there isn’t a definitive cure.” I’m working on keeping this outlook towards anyone that tells me to go see a certain type of alternative doctor, take some kind of supplement, or do some weird headstands. Some days, I’ll admit I’m quicker to shut it down. Other days, I realize that they’re trying to help and that within their willingness to help is my own hope! We want to hear your story. Become a Mighty contributor here . Thinkstock image by: Daisy-Daisy