Day 4: What Caused My RSD/CRPS

Today is November 4, which means…you guessed it…it’s Day 4 of the RSD/CRPS Awareness Photo Challenge!

Today’s Photo: A picture of what caused your RSD (your story)

{Photo credit to Active}

It all started with a 3-legged race.

Well, really, I had other injuries with pain that lasted for unknown reasons, so I think my RSD started before the race. But since the race was what caused me to press for answers and eventually receive a diagnosis, I always say that this was the start of my journey with RSD/CRPS.

It was the end of June 2006. I was at a summer horse camp with my sister and some friends of ours. On the second to last day, we had a rodeo of sorts where we played various games outside. One of the last activities was a 3-legged race. I teamed up with my sister’s friend and prepared to win. The horn blew, signaling the beginning of the race. My teammate and I began to awkwardly make our way to the finish line. About halfway through, we tripped and fell. I began to feel some pain in my ankle, but I decided to push through. I was relieved to untie the ribbon from our legs when we reached the end. As we made our way back to our tents that night, I told my counselor that my ankle was bothering me. She told me that I was probably fine, but that I could see the camp nurse after breakfast in the morning if it was still an issue.

The next morning rolled around and my foot was hurting even more. The dining hall was a good distance from our tent, so I hobbled my way across the campground, wincing with each step. I could hardly eat. I had a bit of cereal before begging to see the nurse. My counselor took me to the medical station and I was asked to sit down. The nurse looked at my ankle, said that nothing was wrong, and wrapped it up (probably just so I’d feel like she did something for me.) When my mom picked me up that evening, the nurse told her that I was fine, saying my injury was “almost laughable” since that sort of thing happened all the time. She said that I didn’t need to go to the doctor, so my mom listened.

As soon as we got home, I found an old pair of crutches and began to use them. I informed my mom that the pain was too intense to walk on. Having no real reason to be concerned, she allowed me to use the crutches. We both figured that I’d be done with them in a day or two.

Days passed, then weeks. I went to the ER for x-rays but was told I was fine. My parents grew frustrated, wondering if I was just using the crutches for fun. I showed them how swollen, cold, and purple my foot was, and they soon realized that this was not “nothing.” I made an appointment with my pediatrician. When I got there, I had to be seen by a different doctor since my regular one was out for the day. As it turned out, this was the best thing that could have happened. The doctor who I saw turned out to be the only person in the office who knew what RSD/CRPS was. If I had seen my regular doc, then I never would have received such a quick diagnosis. The doctor had me close my eyes as he brushed different textures across my foot, asked about my pain, and thought for a second before saying, “I know what you have. You have Reflex Sympathetic Dystrophy, but now I guess they’re calling it Complex Regional Pain Syndrome.”

Hold on, what?! I was baffled by the string of words that had just come out of his mouth. He explained that in order to get better, I needed to start physical therapy immediately. He also mentioned the fact that seeing a psychologist would be beneficial. I began to freak out, feeling as though my world was about to crumble. I didn’t want to be “that girl” who had to see therapists. I didn’t want to be looked down upon or made fun of. I didn’t want to be dealing with this pain. I was a wreck.

I soon found myself bouncing from one appointment to another. It was against my wishes, of course, but my parents knew that it was what was best. I began to spiral downward as the pain and sadness overtook my once-happy self. I started to shut people out, not wanting to talk about anything. I got into many fights with my parents, mostly about whether or not I was complying with the therapist’s orders. As I posted on Day 2, this was the time when everything went haywire.

Since my diagnosis, I’ve dealt with RSD/CRPS in pretty much every part of my body at one point or another. There are no limits for where it can and will go. If I were to go into every detail of my complete journey with RSD/CRPS, I’d have to write a book because it would be too long to post. This is just a snippet of the beginning of my battle.

My journey with RSD/CRPS officially began because of a silly 3-legged race. After this experience, I vowed to never participate in such activity. Ironically, the day that I broke that vow 6 years later happened to be the day that this latest flare/relapse began. Hmm…well this time, I mean it: I will never again be found with my leg tied to someone else’s, hobbling across a field in an effort to reach the finish line first. Never. Again.

I was one of the fortunate people, because I was diagnosed within a few weeks of my injury. Too often, people are forced to wait months, even years, before someone figures out what is wrong with them. This is why awareness is crucial. The longer a person waits for treatment, the harder it will be to reach remission. If more doctors know about this condition, then more people will receive a proper diagnosis. Please help in the fight against RSD/CRPS by spreading awareness for this monster.

One great way to spread awareness is to participate in the RSD/CRPS Photo Challenge! This link will take you to the page with information. The challenge is open to both RSD-ers and Non-RSDers, so it’s great for everyone!

Unsolicited Advice

“Have you tried going vegan? My sister’s friend’s aunt’s mailman was cured of a rare disease by going vegan.”
“Maybe you should exercise more often. That will make your pain go away.”
“I’ve heard that eating a tablespoon of mustard each morning will relieve any health problems. You should try it.”
“Have you tried this medication? I saw a commercial for it on TV last night and thought of you.”
“How about going to a chiropractor? Mine changed my life.”
“Oh, I just read a story about this man who was cured of his illness by using hypnotherapy. Maybe that’s what you need.”

I’m sure many of my fellow chronic illness warriors have experienced the well-meaning friends (and strangers…usually strangers) who try to fix our problems. They hear about our diagnosis and remember that one time when they heard about some magical cure for a completely unrelated problem, and they somehow feel the need to give their advice.

I think it is a natural instinct to want to help people, to solve their problems. We don’t like to see others in pain or going through tough times, so we want to be able to fix them. We hear about pain and want to take it away. We see someone’s life in shambles and want to put the pieces back together for them. I can think of a few circumstances in particular that I would like to fix, people I want to save, but I know that they are out of my control. The problem comes when people overstep boundaries and jump in to try to save the day, often bringing annoyance rather than assistance.

Chances are, if you’re offering someone advice on a so-called cure, they’ve already heard of it. If it’s not super out there (or even sometimes if it is…hey, we get desperate), they’ve probably tried it. And if you’re still offering them advice, then that probably means it didn’t work. I’ll tell you this: I’ve tried the vegan thing…and actually, in my case that backfired majorly without doing anything positive for my health. I do work out when I can, but it usually makes the pain and fatigue worse. So that’s out. I’ve tried all the medications that are advertised on TV, and still don’t understand why we need ads for those sorts of things. Oh, and yeah, they didn’t help. I’ve seen chiropractors, massage therapists, alternative health physicians, and everything else one could suggest. I will admit that I haven’t tried the mustard thing, although that was just some creative license going on there…but I’m sure there are claims about that somewhere.

Truthfully, if doing twelve jumping jacks every day while chewing the leaves of a rare oak tree cured your second cousin’s hair stylist of all her problems, then good for her. But just because a crazy “cure” works for one person, that does not mean it will help the next. Even if it’s a more common treatment, it probably won’t work for everyone. Assuming that chronic illness can be instantly and magically cured with some bizarre concoction that has, to date, helped one person just isn’t very practical. I’m always happy to hear about people who have been relieved of their suffering, but it’s generally not anyone’s place to be pushing treatment ideas on other people, especially when they don’t know the full situation.

Instead of offering your unhelpful advice to the next chronically ill person you see, here are some alternatives:

• Tell them you are sorry for their pain and leave it at that.
• Make an effort to research their condition on your own time. Learn why that magical cure probably won’t help.
• Be there for them. If they ask for help, be willing to serve.
• SHUT YOUR MOUTH. If you don’t have anything nice/helpful/intelligent to say, please keep your comments to yourself.
• If it’s a friend/family member, rather than a stranger you see in the grocery store, stop by with a care package of comforting things. {And by this I do not mean whatever pill/remedy/magic you’re trying to shove in their face.} I’m talking about happy things that they would actually like to receive. Socks, candles, food, movies…tailor it to their needs/preferences. Even a simple card can go a long way in showing that you care.
• Be a listening ear. Most of the time, we don’t want advice. We don’t want you telling us every five seconds that we’re going to get through this, and this has all happened for a reason. We don’t want to hear about your ideas for what condition we might have or what you think might help us. We just need someone who will sit and listen, offering feedback when requested but not being pushy.

The bottom line is this: Don’t try to offer a fix-it-all solution unless you are directly asked for advice. In the world of Google, most reliable treatment options are accessible online. If not, the doctor of a chronically ill person has probably brought it up already. Sure, there are those rare instances where there is an up-and-coming therapy that isn’t well-known or advertised, but unless it has been researched thoroughly, I for one am not one to jump right in and try it. I have doctors, I have books, and I have the wide vault of information at my fingertips in the form of the Internet. I really don’t need to hear about your brilliant cure…but thanks for sharing.

The next time you’re tempted to offer some stupid suggestion about how to cure someone’s chronic illness, please do everyone a favor and hold your tongue. It gets old and tiring after a while to hear the dozens of weird and unsolicited remedies that have not helped. If you must say something, please simply offer your sympathies and move on. Thank you very much, and I hope you have a great day.

P.S. Have you heard of superglue?? I hear it’s a good cure for ignorance and dumb comments…

Red Band Society

Fall is here, and that means it’s TV show premiere season. . I love the fact that so many of my favorite shows have come back this month, and I’ve also enjoyed checking out some new ones. Last week was the beginning of Red Band Society, a new show on Fox that takes place in a hospital. Normally I wouldn’t dedicate a whole post to TV shows, but I feel like this one deserves some attention. If you haven’t seen it yet, stop reading now…I don’t want to spoil it for you! If you have, here are some of my thoughts on the show.

After waiting for it to come out, I finally managed to see the first two episodes of Red Band Society. Let me tell you, I loved every second. Aside from the obvious, uh, embellishments of hospital life (no, it’s not that easy to sneak off a floor, nor is it typical to throw a party on the roof), I think the show incorporates some of the different struggles and emotions of hospital patients.

“They say to really understand someone, you have to walk a mile in their shoes.”

I found myself relating a lot to the characters in this show. Maybe not exactly the way they were portrayed, but in one way or another. Take Emma, for example. She’s there for an eating disorder. Just a few years ago, I was in her shoes. I can relate to the sneakiness, the obsession with grades and studying, and the obvious food issues. But before anyone sees the show and assumes that Eating Disorder treatment is all sweet, cheerful, and free like it seems for Emma, let me just say that it’s nothing like that. When I was first in the hospital for my ED, I was in a locked unit with gray walls and dim lights. I had nurses staring at me, day and night, making sure I didn’t move too much or miss a crumb of food. I was confined to a wheelchair so that I wouldn’t “waste calories” by walking around the tiny area. My weigh-ins were closely monitored and I had to strip down to only a hospital gown to prove that I wasn’t hiding anything. I wasn’t even allowed to pee alone. There were no smiles, only nurses yelling at me and other patients having episodes of rage and anger. Just a little different than Emma’s situation.

Leo is a patient with cancer. His story really struck me because he had his right leg amputated. Sure, amputation isn’t in the cards for me right now, and I’m not saying I know what it’s like to have cancer, but I could relate in other ways. Losing the use of your right leg. Using a wheelchair and crutches to get around. Remembering better days while staring at your non-working limb. Not knowing if things will ever change. At one point during the first episode, Leo and his roommate, Jordi, who shared the same diagnosis, were talking about Jordi’s upcoming surgery. Jordi was nervous for the amputation. “Does it hurt?” he asked. Leo’s response put some of my feelings into words.

“Okay, it does hurt. But, not in the way you think it will…what hurts most is not that it’s gone, what hurts is remembering it was ever there. But then, with time, that memory stops hurting too.”

I realize that my situation it different in that I do still have my leg…and I don’t have cancer. But with the complete lack of use of my leg, it’s about as good as gone. So I do still have those moments, those days, when all I can think about is how things used to be back when I could walk. Even just looking at old pictures conjures so many emotions. “Why didn’t I run more? Dance? Enjoy life?” I go over what I could have done differently, grieving the loss of my old abilities and remembering what used to be.

“One of the hardest things in a hospital is to have someone else get exactly what you wanted.”

Red Band Society puts some of my feelings and experiences into words and images. In the second episode, I felt a connection to Leo when he thought that Jordi had a better outcome than his own. The jealousy of watching someone else get better while you’re still the same. Sure, you’re happy for them, but there’s also that internal let-down that you lost out. Of course, if you’ve seen the show, you know that things for Jordi weren’t as great as Leo thought, but the emotions were still there.

Yes, this show is horribly inaccurate about what life in a hospital is truly like. Hospitals aren’t as cheerful and fun as they seem. You can’t just hang out with your friends all day, going on wild adventures and stealing doctors’ cars. You’re poked, prodded, and asked a bazillion questions, all while sporting the knotted hospital hair-do and peekaboo hospital gown (or real clothes, if you’re lucky). You get woken up at all hours, you’re forced to have your blood drawn while half-asleep, and you quickly become bored of laying in bed all day. But for the purposes of television, things have to be glamorized a bit. I mean, really, I who would want to watch a who about the dullness of real hospital life?! They have to add a bit of sparkle to make it exciting.

Despite the faulty representation of what it’s like to be in the hospital, I can’t help but enjoy watching Red Band Society. It’s deep, it’s relatable, and it keeps you longing for more. I look forward to seeing how the rest of this show unfolds.

If you haven’t seen it, go check out Red Band Society…Wednesday nights on Fox 🙂

{Via Fox}

The Breakdown {Adventures in the ER}

[Warning: Not for squeamish stomachs. If reading about bodily fluids and ailments bothers you, stop reading now.]

It all started around 10:00 last night. Well, maybe earlier. Yesterday (Friday) I was feeling pretty lethargic and had a headache all day. That’s not really anything out of the ordinary so I just sort of went with it. The Great Debate that I had written about a few days prior was still going on. Do I see someone about my growing foot ulcers, do I ignore them…what do I do? So I was thinking about talking to my mom about that situation this weekend. Well, I guess things have a way of speeding up the process sometimes.

My mom was sleeping after an exhausting day…well, actually, she got a massage, so that probably made her tired. Anyways, I was in my room, checking on said ulcers. I did some (painful) cleaning and prodding to assess how bad it seemed As I was doing so, blood suddenly began gushing, and I mean gushing out of my foot. I started to panic as scarlet liquid drenched tissues, my hands, and my carpet. I waited for a while, trying to compose myself, but I just couldn’t stay that way all night. I told my dad, who woke up my mom, and soon they were both crowding my very tiny bedroom, trying to figure out what to do. I felt horrible for bothering them but knew I would be up all night worrying if I didn’t do something.

About a minute after entering my room, my mom became dizzy and nauseous. She had to leave, so she was down. Meanwhile, my dad, who is phobic of blood and vomit, had to deal with us. Once she felt better, my mom came to intervene. We talked, I cried, she brought up going back to Cleveland since they know how to deal with me and my RSD shenanigans. I cried some more, felt overwhelmed, and freaked out a bit. Since a drive to the Cleve wasn’t what I wanted to be doing at 11:30 that night, I opted to go to our local ER. I honestly thought I had an infection or something. I mean, it was draining fluids, gushing blood, and smelled downright gross…indications of infection, maybe, right? We gathered our things and were out the door around midnight.

When we got to the hospital, the waiting room was packed. I seriously wondered how that many people could be sick and injured at that time of night. I signed in, went through triage (twice, because they forgot to save all the info on the computer the first time), and waited. And waited. And waited some more. Finally, after three hours, I was called back. After the girl with the sniffles, the woman who wavered between going home and taking pain meds for her discomfort or staying there, the pregnant momma in labor, and the intoxicated man. Oh, and about twelve other people. It was a relief to finally be on the track to getting help. Or so it seemed.

At 3:30, I got myself situated in the small room. In the hallway, the nurses and techs were having all sorts of conversations ranging from the colors of watermelon (which literally went on for 15 minutes) to the crazy patients they’d had, to how they were going to redo their homes. I guess that answers the question about why we had to wait so long. Eventually, a nurse came in and asked some questions. She, of course, had never heard of RSD/CRPS, so I had to explain it to her. She asked me to write it down on a paper towel so she could do some research. I gave her the names of the disorders, along with the website for the RSDSA.  I was happy that she seemed interesting in learning about this painful condition.

After the nurse left, I sat there waiting for about 2 more hours until a resident came in. He didn’t even bother to introduce himself. He just said, “oh, I hear you have an injury, let me see it.” He seemed pretty arrogant, and I didn’t like his bedside manner. My mom asked if he’d heard of RSD. He gave a fake answer of, “oh, uh, medical school…” Just like that, not even a complete sentence. He didn’t know what it was. I could tell, because he focused way more on my headache than on my leg…because he knew how to assess a headache. While Dr. Know-It-All was talking to me, a tech came in to start and IV and draw blood. I have a habit of looking at the needle while they’re poking me, so that’s what I was doing. Apparently this wasn’t good enough for Dr. Newbie. “Are you going to look at me [while I’m talking]?” he asked. “Uh, no. I have to look at the needle,” I replied. I don’t think he liked that answer. The doc and tech eventually left and I remained in my room.

I heard more nurse conversations in the hallway. Two were placing a catheter, one was dealing with a hungry man in the hallway, and the rest were discussing odd patients. Every once in a while I heard them talking about me. “Uh, complex…something, pain something.” They were giving it a good effort, so I did appreciate that. The conversations continued and I listened in. In the time I was in that room, 4 babies were born, signaled by the sound of a lullaby on the loudspeaker. I figured it was either a poppin’ night for births or I had just been there too long. Or both.

At around 6:50, the attending physician came in. He said my blood results were normal and that I didn’t appear to have an infection. Apparently the fluids and the gross appearance are “part of the healing process.” That’s what I had been telling myself for the past 7 months to justify not having them checked out. I guess I was right after all. The doctor said I was free to go, so the nurse came in, pulled out my IV (which had been burning my arm), took my vitals one last time, and sent me on my way around 7:15am, almost 7 hours after we had arrived. No referrals, no instructions, no medications. Just a “good luck.”

7 hours in the emergency room, only to be told that nothing was wrong. I definitely feel like I wasted time and money for nothing, but at the same time, it’s good to know that my foot isn’t going to fall off or anything. It looks like I may be looking into Cleveland again, though, which is good and bad. I mean, it matches up with my last post, because I told my mom about how tired I was and how I am ready to fight for my health. But at the same time, that’s a can of worms I had hoped to keep sealed. Forever. Plus, that would mean missing more school. I guess we’ll just wait and see what happens there.

Well, I think I’ve had enough adventure for the night. I haven’t slept since Thursday night so I’m pretty exhausted. I just had to get out all my thoughts and experiences before I drift off to dreamland! I hope you all had less exciting nights 🙂

P.S. Sympathetic Reflex Dystrophy??? Yeah, that’s what they wrote as my diagnosis. Someone needs to be educated.

We Are All Different

Today it was brought to my attention that a fellow RSD-er was complaining to a friend of mine about the fact that I’m not open enough about my struggles. She doesn’t understand why I don’t like to talk about my RSD to her, when she talks about her pain daily, and she doesn’t know why the treatments that worked for her didn’t work for me. Let me answer that all for you…we are not the same. Yes, we may have the same diagnosis…but that’s the end of our sameness. Same diagnosis, different lives.

Part of the beauty of life is that we are all different. If we all looked the same, acted the same, and lived the exact same lives, we’d be more like robots than humans. Frankly, life would be a boring, pointless mess. Instead, we all have unique personalities and go through various experiences that affect us in different ways.

Aside from the general uniqueness of humans as a whole, we RSD-ers each have our own journeys to travel and battles to fight. RSD isn’t a cut-and-dried diagnosis. Even from the initial presentation, our pain can show up in a variety of ways. For example, my RSD is very visible with swelling, discoloration, contractures, and (now) ulcers. However, I have friends who never present with swelling or any other major symptoms besides the excruciating pain. Some people have hypersensitivity; others can tolerate touch.

Once you get into the topic of treatments, it’s a trial-and-error sort of a deal. There is no cure for RSD, and there is no single treatment that works for everyone. The fellow RSD-er that I mentioned underwent a procedure that changed her life. For years, she and others bugged me about trying it. When I finally ran out of options and went into the OR last year, they expected it to work just as well for me. To my great disappointment, the procedure was not a success for me. Some people are able to manage their symptoms with medication; others use acupuncture and alternative options. It’s amazing how wide the spectrum of RSD diagnoses and treatments really is.

Some people want everyone to know everything about their lives; others don’t. Personally, I am naturally reserved and quiet. I only choose to share the really deep struggles with specific people who have gained my trust…well, and sometimes on this blog. I don’t talk to everyone in my life about my RSD because not everyone understands. For some, they understand but they give bad advice or pressure me into doing things I’d rather not do. Others have RSD and think that we are the same person because of it, and they aren’t able to understand when I don’t want to talk or when a treatment fails. If I talked about every struggle, every ache and pain, and every worry in my life…well, my words would never end. I don’t want to be “that person” who wallows in her disorder rather than exploring and enjoying the beauty of life. I find it easier to simply write out my thoughts or talk about my struggles with the few people who I know I can trust…the ones who care and who listen without judgment.

Now, I’m not saying that we RSD-ers can’t relate to each other at all. In fact, I think it’s beautiful that we have a common thread with what we’re dealing with. All I’m trying to say is that we all face different monsters and we are not exactly the same. We can relate, we can understand to a certain degree, but we cannot know exactly what another person has been through or feel the precise pain that they are in. We all deal with our problems in different ways, and we need to respect that without judgment.

 

A “Normal” Diagnosis

Today I took a Saturday field trip to my (not-so) favorite place…Urgent Care.

As someone who would rather not have interactions with doctors, I tend to avoid places like Urgent Care as much as possible, especially when it has to do with my RSD/CRPS. I don’t like dealing with people who haven’t even heard of this disorder and are even more clueless about to help. However, this trip had nothing to do with my crazy chronic pain, so I was a little bit more willing to go.

I went to fill out the papers to be seen, and of course, everyone thought I was there for my leg. I guess the crutches and swollen-ness make people automatically assume that that’s the problem. I was quick to inform them that I was not there for my leg, and was instead there for something a little less complicated…my eye.

I know, I know…urgent care for an eye issue? Well, here’s the story: on Thursday I got home from a busy day of babysitting and felt some pain in my eye. I grabbed a mirror and took a look, quickly realizing that it was red and a bit puffy. Of course, after spending time with kids and seeing a red eye, I automatically thought it could be the dreaded pink eye. I decided to let it go and waited to see if it would improve. It didn’t, so that’s how I ended up sitting on an examination table, staring at painted giraffes and zebras on the wall and waiting to be seen.

The doctor was very kind and even knew what RSD is! What a concept! He did a really cool test where he numbed my eye, put a piece of paper on it to dye it orange, and then looked at it using a magnifying glass with a purple light to check for any scrapes. I’m sure there are fancy terms for all of this, but whatever. After a quick test my diagnosis was discovered…a corneal abrasion. Easy, simple, normal.

Maybe it’s weird, but I was elated when I found out that there was actually a physical reason for my problems, and that it was normal and easily treatable. When you’re used to being the “mystery patient” with crazy symptoms and diagnoses, it’s nice to have a break and just be average. Usually I leave doctors’ offices more confused than I was when I walked in, but not this time. I had a great experience and walked out with a prescription in hand.

In the end, I’m glad to know that it’s nothing crazy and not at all contagious. I have instructions to not wear contacts for a week and I have a couple bottles of eye drops to use, but hey, things could be so much worse. So here’s to being normal, at least for once in my life! 😉

A Letter to Those Newly Diagnosed with RSD/CRPS

This month marks the 8 year anniversary of my initial RSD injury. Today I found out about another warrior who was just diagnosed. My heart aches, knowing the verwhelming feeling that comes with such a complicated diagnosis. So, to anyone who has recently had the unfortunate experience of having a doctor say, “you have RSD/CRPS,” this is for you.

 Dear Warrior,

This message is for you. Yes, you are a Warrior because you have just stepped onto the battlefield of one of the biggest wars you’ll ever fight in. The war against RSD/CRPS. Things may look bleak and confusing at first, but it gets better. These big words, “Reflex Sympathetic Dystrophy,” or “Complex Regional Pain Syndrome,” can feel daunting. What do they all mean? Why are there different phrases for the same diagnosis? While you may feel relief that you finally have an answer to your pain, you may be feeling a greater weight knowing that this isn’t just a broken bone or muscle strain. The swirl of emotions can hit you pretty hard, but take some deep breaths and approach it all one day at a time.

Know that you are not alone. Although it’s true that you’re now part of a vicious battle, you are fighting alongside millions of other valiant warriors. You don’t have to do this on your own. There are always people who are here to support you and walk with you as you navigate your way through this new world of chronic pain. Reach out to me, reach out to others. Don’t be afraid. You are not alone.

There may be people who don’t understand, or who might not believe that anything is wrong. Doctors, even, can be discouraging with their words and attitudes. Our pain is very real, this disorder is very real, but for those who don’t experience it firsthand, it can be difficult to comprehend. Don’t allow the negative comments of others to get you down. It’s hard to grasp the depth of this ‘mystery’ diagnosis, but know in your heart that you are not going “crazy,” this is not “all in your head,” and none of this is made up, even if people don’t understand.

If you are like me and head to Google, prepare yourself. There are so many websites and articles about RSD/CRPS, some better than others. There are some amazingly helpful organizations and websites (The RSDSA is wonderful– RSDS.org), and there are also places that will feed you information that is neither helpful nor true. Take everything with a grain of salt unless it is backed up by evidence.

The funny, frustrating, confusing part about this disorder is that no two people have identical experiences. For some, one treatment is a miracle and they jump right into remission. For others, they might try that treatment along with five others before they find something that helps. You never know until you try it. There are some medications and treatment options that have high success rates and might be worth pursuing before others, but just know that everyone has a different journey. This isn’t to depress you or discourage you; in fact, I hope to encourage you with the fact that you could be one of the lucky ones to find a treatment that works early on. They say early treatment is key; I believe it.

This journey can be scary. It can be sad, it can be disheartening, it can be confusing. It can also bring joy into your life that you never knew was possible. I know, I know…how can you say that there can be any sort of joy in all of this? Well, have you ever felt the incredible rush of emotion after taking your first step in months? Have you felt the pride of beating the odds? These things will come later on, so hold onto hope. Even if the elusive remission doesn’t come, or takes longer than expected, there can still be plenty of happiness along the way. You’ll meet new people with whom you will share deep bonds. You’ll be able to share your story and help others. You’ll appreciate the small things more as they become the big things.

What I really want to tell you, dear Warrior, is that this is not a death sentence. It does not mean that you have to be stuck in hospitals and doctors’ offices forever. I want to tell you, brave Champion, that it is possible to live a full, happy life despite the pain. You can still do the things you enjoy and love those close to you. You may have to adjust things a bit, but there is so much greatness inside of you and you will make it. I promise. So fasten your seatbelt and hold on tight, because this is going to be a bumpy ride…but in the end, you’ll come out stronger than before. Grasp onto hope and never, I repeat, never give up.

I’m here with you in the battlefield, cheering you on and waiting anxiously for the day when a cure is found and this battle is won for good. Until then, stay strong, my friends. Stay strong.

With well wishes for strength and courage,

Rachel, a fellow RSD/CRPS Fighter