2 Year Crutchiversary

Crutchiversary…

Pretty sure that’s not a word, but that’s okay.

Today, September 3, 2014, marks 2 years out of remission. Two years since a nurse in the Emergency Room handed me my crutches, saying I simply had an ankle sprain and that I’d be off of them in a matter of days.

When days turned to weeks, I knew that this was more than a sprain…my worst nightmare, the return of my RSD/CRPS, had come true.

I first got the e-mail about our “super secret” dorm initiation on the afternoon of September 3. I had spent the day shopping with some friends, doing some crafts, and settling into my new life at school. My suite mate and I had intended to go for a run that day, but the gym was closed so we held off. As I was trying to clear space on my computer, deleting pictures and scanning over old photos of my RSD limbs, a notification in my inbox said that we were to meet in the hallway at 10pm sharp, wearing something that we didn’t mind getting dirty. I had heard rumors about some people jumping into the campus pond, but I didn’t know if that’s what we were going to do. I felt uneasy about the whole thing but tried to be a good sport, so when 10:00 rolled around, I got in line.

One by one, girls were taken into the dorm lobby and matched up with a guy from our brother floor. Peeking over some heads, I could see that they were tying peoples’ legs together like a 3-legged race. Just that morning I had told my friend Annie about the day my RSD started with a 3-legged race, so you can imagine my growing anxiety as the red ribbons were tied. I leaned over to Annie nervously, saying, “I don’t know about this…remember what I said about the last 3-legged race I did?” I almost turned back and hid in my dorm, but it was too late. I was nudged to go take my turn, so I hesitantly made my way to the lobby.

I made eye contact with my partner for the evening, who gave me a fake rose while our legs were tied together. From that moment, we weren’t allowed to talk. Once everyone was tied up, the non-newbies led us into the darkness outside. We had to follow their instructions of crawling, hopping, and doing whatever else they wanted. If we talked, which my partner did, we were squirted with water. I tried to laugh along but in the pit of my stomach, I could feel that something was wrong.

We eventually made it to the campus pond, which confirmed my prediction. Just days beforehand we were sitting at the pond, putting candles with papers that we had written our fears on into the water. It just so happened that my fear for the year was that my RSD/CRPS would return…little did I know that this very place would be where that fear would become a reality.

By the time we all got settled at the pond, it was hard to see anything. The dorm leaders gave us a speech about becoming official members of the floors, and we were instructed to jump in the water with our partners. One by one, our red ribbons were cut from our ankles, which was such a relief. People began jumping in pairs, some choosing to simply walk through, others doing cannonballs. Seeing their stunts, I had the impression that the pond was fairly deep. I couldn’t see the bottom, especially since it was so dark. When it came time for Matt and I to jump, I went all in.

I must have blacked out when I hit the bottom, because the next thing I remember is crying in pain while about five other people were jumping in. I didn’t know what had happened, so I was confused and in agonizing discomfort. It took a few minutes before anyone realized what had happened. “Um, I think this girl’s hurt,” someone said. A few people helped me to scoot my way out of the pond and onto the grass. I was sprawled out, crying, wishing I could wake up from this bad dream. People continued to jump in the pond and soon everyone was ready to go back. My partner introduced himself to me before leaving with the group, and my RA and a few others stayed behind.

When the pain wouldn’t subside, campus safety was called. A man came to me with a small notebook, asking for details on what happened. I described the incident to him, trying to contain my anxiety while telling him about my RSD. The man called my mom, waking her from sleep. We talked to her for a while and I finally agreed to go to the hospital. I couldn’t straighten my knee or move my ankle, so I thought something might have been broken or torn.

 After having X-Rays at the hospital while talking to the tech (who told me he had seen lots of injuries from that pond), I was taken back to my room where I was told that there was no major damage. “It’s just a sprain, so you’ll be fine,” the nurse said, even after I gave her the lowdown on my RSD history, noting that sprains usually aren’t so simple for me. Still, I listened to what she said and truly hoped she was right. I hopped away on crutches and finally returned to my dorm in the middle of the night, eager to begin classes the next morning.

I remember every second of that gut-wrenching night. The pain, the flashbacks, the tears. 2 years and many treatments later, I’m still fighting to regain use of my right leg. I guess it just goes to show you that you never know what a day will bring. I woke up that morning expecting to go for a run, get some things done, and prepare for a great year of leaving all my health problems behind. I was finally in recovery from anorexia and a cutting addiction and in remission from RSD/CRPS, and I was ready to face the world. I was so excited to begin a new, healthy chapter of life. I had no clue what was just around the corner.

I’ll never know why this happened. I’ll never understand why the best week of my life had to take such a sharp turn. I do know this: things could be worse, and while I sometimes wish I didn’t have to deal with this mess, I am grateful for all the friendships made, knowledge gained, and experience that I’ve been able to have as a result. It’s all part of the story that makes up who I am today. 2 years later and I’m still on this crazy rollercoaster, but I’m alive, breathing, and learning along the way. I guess that’s all I can ask for.

It’s funny how something so beautiful can be a part of something so devastating.

 

Rocky Roads

August 7, 2013. The day that was supposed to finally hold good news. I woke up early that morning, of course with someone shoving a needle in my arm. After a number of pokes my blood was finally flowing out and sent to the labs. I was more than ready to be done with this morning routine.

My aunt and mom had stayed with me the night before, so they woke up during my blood draw. We all had a fresh glimmer of hope in our eyes, and although it wasn’t very bright, it was the most we had had since my fall. I was forced to drink some water and empty my bladder before anything was to proceed. My mom and I talked to everyone who came into the room, desperate for answers. Since we had a 3:30 deadline, it was critical that we have all the paperwork signed as soon as possible. The nurses came in and out with no knowledge of what was going on. Some were surprised that I was being discharged, while others seemed relieved. Finally their mystery patient was leaving the floor…or so they hoped.

They began cleaning me up and washing my hair in one of those shower cap contraptions that only seemed to add more knots to it. While changing my gown, they discovered the piece of gum that the nurse had dropped on me the night before while trying to grab my vitals. Delightful. I felt like some sort of animal being tossed around as they shifted sheets, washed my tender body, and put “real” clothes on me.

At around 10:00am, a doctor finally came in. We told her that we were planning on going to the Cleveland Clinic, but that we had to be out soon in order to make it there by 3:30. We requested for all the paperwork to be sped up so that we could be discharged.

After discussing our hospital plan, we were then required to figure out how I was supposed to get into my parents’ car. The nurses and doctors pitched it as some sort of challenge. No, really like, “we don’t like you, so you can fend for yourself.” I asked if they could use a lift sling to at least move me from the bed to a wheelchair. When they declined this suggestion (for reasons I’m not quite sure of…I know for a fact that they had those devices in the hospital), I asked if they had a lift team who could do it. They once again said that this was not a possibility. I mean, I am a full-grown female, but I didn’t think I was that heavy!

We were eventually told that we had to figure our own way out of the hospital bed because they were not willing to help.

I was so frustrated as the discussion about how I’d get out of the bed continued. I was so desperate to leave, but I felt stuck and helpless. I didn’t understand why they couldn’t just find a lift or a team to help me. I mean, they lifted my body for the clothing change…was it really that much harder to move me to a chair?! Apparently it was. With no options left, we ended up having to call our friend to help. So here we were, calling our friend who had recently had a stroke, to drive a good 20 minutes to the hospital so that I could be carried out of bed. Really?!

Finally, around 12:30pm, the paperwork was printed and ready to go. Of course, then we had to wait for them to give the final instructions and see us on our way. My parents signed everything, listened to their summary of my (total lack of) care, and prepared to spring me out.

Our friend arrived around 12:45. I felt bad because he had to deal with the stench of stale urine on my blankets and sweat on my body…because we all know that sponge baths don’t really help that much. He held his breath, figured out his plan of attack, and lifted me into the oversized hospital wheelchair. I was crying in pain and dizzy from not sitting upright in days, but I was thrilled when we left the room. I had a slew of unkind words that I wanted to yell down the hall at the doctors and nurses, but I held my tongue.

The car ride to Cleveland was another huge hurdle. I was spread out across the seats in just the right manner so that nothing was touching me. Each bump and sharp stop sent me reeling. After a few hours in the car, I felt the greatest sense of relief when we pulled up to the hospital, the place I had vowed to never return to. The time? Just before 3:30. We made it.

One of the Occupational Therapists who I had known for a while came out to move me from the car to the building. He, along with a few other therapists, found the right wheelchair and gently moved me into it. I was then wheeled to my room where I was placed immediately in the bed. My parents unloaded my things and went to a hotel shortly after since visiting hours were ending.

The Rehab Hospital does not mess around, so I was forced to eat and drink something that night. I was spoon-fed while laying in bed, which isn’t ideal. Thankfully, I was given extremely nice nurses that evening so I felt much more comfortable than I was at the other hospital. I was given my nightly cocktail to knock me out and went to bed anticipating the beginning of my rocky journey to better days in the morning.

Check back tomorrow for the details of my first week in Cleveland…(This series is ending soon, I promise!)

Stop Bumping the Bed

This post is a continuation of the recap of the events of this time last year after falling on my crutches, causing a spread of my RSD/CRPS. The following contains detailed descriptions of my hospital stay…the good, the bad, the ugly. Read on if you wish.

Day 2 in the hospital was filled with more uncertainty, tears, and pokes. Nurses came in and out, most not caring to even familiarize themselves with my condition. I did have one nurse who was kind enough to print up some information about RSD/CRPS, in hopes that others would take a look. I remained in bed, unable to move below my neck.

At one point, a team of doctors came in my room. There was a man with a bunch of residents trailing behind him. The doctor introduced himself and spoke in a harsh tone. He briefly described my disorder to his residents, then went on to tell me what I needed to do.

“You know, this is mostly a psychological issue,” he said while rocking on his feet, hitting my bed each time. “In order for me to treat you, you need to come to my clinic to receive psychiatric help.” He continued talking about how he would only treat me if I agreed to see his psychologist. He wanted to see me in an outpatient facility and said that inpatient treatment was not acceptable, despite the fact that I couldn’t even pee on my own. His constant bumping of the
bed sent deeper strikes of pain through my body each time, and eventually I snapped.

“Get out of my room, and for the love of everything in this world, STOP BUMPING MY BED,” I cried. He looked angry, then continued shoving his ways and ideas down my throat while still hitting the foot of my bed. There were several other people, including friends and family members, in the room with me. They were all annoyed by the way he spoke to me and his stupid idea that RSD/CRPS was mostly in your head. After enough discussion I finally managed to make him leave the room, never to return.

Well, after the unfortunate experience with Dr. A**hole, the hospital somehow decided that I was refusing all treatment…just because I said I didn’t want to be treated by him. They told me that insurance was not going to cover my stay, and that I needed to leave the next day. Try telling that to a girl who can’t get out of bed, can’t feed, bathe, or dress herself, and who can’t even handle the slightest wisp of air touching her body. Yep, I was definitely not “bad enough” to be in the hospital or to be covered by insurance.

Now, I’m not saying that I want to ever be “bad enough.” Hospitals are my least favorite place to reside and I’d much rather be healthy than sick. However, in this moment, my “not bad enough,” by the standards of that doctor, was causing me to lose out on the medical treatment that I desperately needed.

At that point, I was irate. I was helpless, hopeless, and now people were not willing to do anything to make me feel better. One doctor asked what I thought should happen. Since medications don’t usually work for me, I didn’t want to try them. I mentioned Ketamine and how I had received it at the affiliated children’s hospital a few years prior. They made some calls, then came in to tell me that that hospital had never administered Ketamine, and they made it clear that they would not give it to me.

The other options that my family and I had suggested, including Magnesium (one of my Cleveland docs recommended that) and PT/OT, something that has worked many times in the past, didn’t work. Wait, scratch that. Magnesium didn’t work. The hospital wasn’t even willing to let me see a Physical or Occupational Therapist, with the exception of one very short OT eval where the woman had never heard of RSD and didn’t know how to help. I begged for some kind of therapy, but they wouldn’t allow it. They said I didn’t need it or something.

The evening was spent with different visitors, trying to get my mind off of things. The doctors and nurses had told us that we had overstayed our welcome and needed to leave the next day…I would have happily ran out of the hospital that very moment, if my legs…or any body part other than my face, worked. I was ready to leave, eager to be done dealing with doctors, and feeling pretty frustrated.

I went to bed that night and tried to sleep. The pain kept me up, along with the flow of thoughts. I wasn’t sure what the next day would hold. Would they really send me home? Would my mom have to become my “nurse” again? Would I even be able to get home? Eventually a cocktail of medications knocked my thoughts out enough for me to sleep, holding tightly to hope that things would change.

Stay tuned as the roller coaster ride continues…

Don’t Limit Me

When people see me hopping along on my crutches, they usually have their preconceived thoughts about what this means. Perhaps they think I broke my leg, or maybe they’re imagining a rough run-in with someone on a soccer field. Regardless of the reason for my aluminum sidekicks, people often assume that crutches=limitations. But that doesn’t always have to be the case.

I currently work with someone who also has RSD/CRPS. She’s doing pretty well from a functional standpoint, dancing and having a mostly normal life. While it’s cool, I guess, that we share the same diagnosis, it’s not cool that she bases her views of me and my abilities on her experiences. I don’t want to go on too much about this subject, mostly because I don’t want to gossip or anything, but here’s what I will say…

Crutches or no crutches, diagnosis or no diagnosis, don’t limit me based on your own set limits.

Let me give an example. The other day, we were all on a walk. I was catching up with everyone because I got caught talking to someone as we were leaving. My friend/coworker made a comment about staying back with me because I was going to be slower (you know, since my crutches make me sooo slow). Well, that comment wasn’t needed as I made my way to the front of the group, but we’ll leave that at that. Then, we came to a set of stairs. I was prepared to venture down without a problem, but she decided to point out that they weren’t “crutch-friendly” stairs, and that I couldn’t/shouldn’t go down them. This angered me, as I have traveled up and down those stairs many times (yes, on crutches) with no issues. The point is that maybe she was slow on crutches, and maybe she had a tough time doing stairs, but her personal experiences do not translate into my own.

People try to limit me all the time, even people I don’t know. They insist on carrying things that I am more than capable of carrying, tell me where I can go and what I can do, and they don’t let me do things that might be “too hard” or “too dangerous.” I can understand some of these things becoming necessary for, say, people who have just started to use crutches. They might be a little clumsy or unsteady, as I was for my first few weeks. I can also accept the fact that many people are simply trying to be helpful or watch out for me. I appreciate their care and concern, really, I do. But this isn’t some temporary stint on crutches. This is my new lifestyle…well, 2 years new. And since there’s nothing on the horizon to suggest that I’ll be losing the crutches anytime soon, it’s something that I’ve needed to feel out for myself.

I’ve gotten used to my so-called limitations, overcoming many things that I thought I couldn’t do. I’ve learned how to carry things, watch out for hazards, and assess situations before going forth. I know what might not be a good idea, or what I might need to slow down while doing. I know what I can and can’t do. If I need help, I’ll ask for it. If something doesn’t look safe, I won’t do it. But unless I set my own limit, I don’t need anyone else to tell me that I can’t do it.

Don’t let anyone limit you. If you have a dream, go for it. If you want to do something, do it. Ignore the people who try to bring you down and do what you know you can do.

Stares, Questions, and Comments

I had an interesting conversation with the psychologist at my not-so-wonderful appointment last week. She was telling me about a show that she had recently seen (Violet). It was about a girl who had an accident that disfigured her face, so people often stared at or teased her. The psych related this show to my own life because of the way my leg is swollen and disfigured. She then asked me if I’d rather have people stare and say nothing or just ask about it. I thought for, well, 0.2 seconds, and then gave my answer-I’d rather them just ask.

I often see people staring at my leg, or doing the whole “look when I’m not watching” thing, where they’ll sneak a glance after I’ve walked past them or when I’m looking the other way. I want to say something snarky, like, “hey, take a picture so you can stare all you want,” but I refrain, thinking of the times when I see someone who is a bit different. I think looking or staring is a typical response for most people, regardless of whether it is right or socially acceptable.

I’m really not a fan of the stares, but I feel more comfortable about people looking at my leg when I can explain what happened first. That way they don’t make any assumptions or judgments simply based on what they see. I can tell them about my accident and my RSD/CRPS and let them into my life a bit. Sure, people don’t usually want to stand around listening to all of that stuff (which is why I usually just say, “I have a chronic pain disorder called RSD,” and leave it at that), but sometimes they’re really curious and willing to learn. I like those kind of people because then I’m able to spread awareness about this monster.

The comments people make are usually worse than the stares and questions. People asking if I knew my leg was so huge, or trying to compare my situation with that one time when they got a paper cut…yeah, not helpful. Or how about the people who say I can’t do things just because I’m on crutches? Ooh, that makes my blood boil. I know my limits and I know what I can do and what might be a bit more challenging, so I don’t really need the opinions of others to help me figure that out.

So, if you ever see me roaming around a store or taking a walk down the street, feel free to ask questions. I’ll even answer the dumb ones, like if RSD is contagious (for the record, it’s only as contagious as a broken leg). Once you’ve taken the time to become educated on my condition, then you can stare all ya want…but keep your silly comments to yourself, please and thank you.

 

When It’s Time to Let Go

It’s been a week since my crazy, disappointing doctor’s appointment. In the past week, I’ve been wrestling pretty hard with something, and that is this:

When is it time to let go instead of holding so tightly to my plans for my life?

As I have said, I planned for this appointment to work out. I thought I would go through their pain program and come out running. Once I checked “walking” off my to-do list, I would continue my studies and obtain my Master’s Degree in Occupational Therapy. From there, I would help people like myself to reach their maximum potential and realize that they are stronger than whatever tries to get them down. I planned to (hopefully) find a good man, settle down, maybe become a mom. All of this was contingent on that first item of business, defeating my RSD. And as time goes on, that check mark is looking more like a giant question mark, causing me to think more deeply about these so-called plans.

I don’t think I’m ready to let go of the hope that I have of walking again. I’m not sure I’m ready to give up my plans of becoming an OT, either. Sure, I have a sort-of backup plan for my career, but this is something that I’ve been dreaming of for years. Maybe that’s not the way things were meant to be, though. Maybe something better is waiting around the corner if I just let it all go.

I will never quite understand why all of this is happening. As I dealt with one of the many challenges of being on crutches today, I thought about my younger years, before all of this chaos began. I wondered how my 7-year-old self would feel about how my life has turned out. Back then, the biggest pain I had experienced came from the process of getting stitches sans numbing medication. I wonder if my life plan would be different if I knew that this would all happen back then. Would I have set the bar lower? Chosen a different career path? Treasured my healthy moments more? I guess I’ll never know.

Maybe in letting go, my life will fall into place. Maybe my tightly clenched hand is preventing me from opening my arms to a bigger adventure. Perhaps it won’t be quite in the way that I may have originally imagined, but I guess I need to trust the process and know that eventually it will all work out how it’s supposed to.

NYC on Crutches

Part of my family’s road trip adventures this week involved a couple of days in NYC. I had been when I was younger and enjoyed it, but this was the first time exploring the city on crutches. When you add in the fact that I ventured into NYC right after a terribly disappointing doctor’s appointment, you might imagine the kind of mood I was in at the time. Not good. So this is just about my personal experience of one (grumpy) day in the city, not necessarily a reflection of NYC as a whole.

We took a train from Hoboken into the city so we didn’t have to mess with driving. We found an elevator and figured out where we were going. Once we reached our stop, or the stop that we thought we were supposed to meet my siblings at, we got off. After making the trek up the (many) stairs, we soon realized that my brother and sister were actually 9 miles away. I was willing to take the stairs back down to take another train, but my mom didn’t want to mess with it. At that point we were hungry so we bought some food and grabbed a cab.

When we finally found my siblings, I ate my lunch, bought some watermelon juice (which was amazing), and took a moment to calm down. I was super stressed at this point. I’m an introverted, socially anxious, peace-seeking kind of person, so the swarm of people and high stress levels of my family members were not a good match for me. Eventually things started to improve. We found an apartment for my sister, walked by the place where she’ll be working, and did some shopping. Things were better by the time we reached our car later that evening.

That was just one day in the city. The next day was much better, but we were more in the boroughs rather than in the heart of NYC.

So how was NYC on crutches different than it was the last time I was there? Well, there were a few differences…

-Accessibility of transportation: I already mentioned the endless stairs to get in and out of subway stations. While we were able to find elevators in some places, that wasn’t always the case. I don’t mind taking stairs but with the busyness of the city, I felt like an inconvenience because I had to take things slowly, one step at a time. As a side note, I think they should install slides or something on the sides of the stairs. Wouldn’t that be fun?
-People: It’s NYC, so of course there were people everywhere! I was afraid that someone might bump into me, causing me to fall.
-Busyness: Everything felt so rushed. People had places to go and we had things to check off our to-do list. It’s hard for me to go fast without tripping, so this rapid pace wasn’t a great fit.
-Subways: These were fine when they weren’t full, but in the evening, there were lots of people riding the subway. At first I wanted to stand and not bother anyone to move, but then my mom made me sit down. I did, but soon discovered that this was even worse! It was cramped so people were uncomfortably close to my leg. Also, lots of people took their time to stare at my giant foot. I know that looking down is less awkward than looking at everyone’s faces, but come on. One guy stared for a solid ten minutes. If they just asked then I would have told them about it.
-Tiredness: When I was younger and healthy, I had enough energy to last for days. But after an already exhausting morning at the doctor, my tiredness rapidly increased. My family kept wanting to see more things and walk to more places but I had trouble keeping up. I just wanted to go to sleep.
-Attitude: Of course, things are always better when you’re in a good mood. Next time I will have to put on a better attitude before throwing myself into all of that.

I’ve already said that this trip wasn’t a vacation. We had things to do and felt rushed for time. Now that my sister is living there, I’ll have more opportunities to remake memories and create a better mental image of NYC. I already have a list of things that I could do differently next time to make things work. I’ll be more prepared and remember to put on a smile and an open mind before venturing into the city.

To those of you who live in NYC, I don’t know how you do it. I guess you get used to that sort of lifestyle, but for someone who’s used to a slower pace with less people, that big city is overwhelming! I guess we’re all wired up differently. The world would be so boring if we were all the same 🙂

Today’s The Day

Well, it’s Monday morning, June 30th, AKA the day I’ve been looking forward to in nervous anticipation for months. It’s the day I finally seek new treatment options and plan ahead for my future. It’s the day that could potentially determine a lot about the next few months, maybe years. I’d say it’s a pretty big day.

After driving for about eleven hours yesterday, my family and I finally reached our destination. We’re staying with our relatives which is a bonus because that means we get to spend time with them! So far things have been lovely, but I still can’t shake this feeling of anxiety from the pit of my stomach. So much hinges on this appointment and I’m trying not to get my hopes up too high, but at the same time, I’m crossing my fingers that this is a good next step.

At this point, I’m willing to risk a lot to try this new program. School can be put on hold, I’m releasing my tight grasp on my summer plans, and I’m trying to keep an open mind. If this plan is a flop then there aren’t many other things that I’m eager to try, mostly because I feel like I’ve tried everything. Well, not everything. There are some things that people claim help but they have their own side effects and risks that I’m not willing to venture into quite yet. So basically, I’m banking everything on this place.

After the past 8 years, I know that things like this are a total toss-up. You never know what will help or if you’ll get a nice doctor who knows what they are doing. RSD/CRPS is such a delicate disorder and having a knowledgeable treatment team is key. From what I’ve heard, the place where I’m going for my eval is nice and there have been many success stories from their program. I’m keeping this in the back of my mind as a source of hope. If they’ve helped other people, maybe they won’t give up on me or turn me away.

Here I am, just rambling on about my much-awaited appointment. I’m sure my complete lack of sleep doesn’t help in that area, but hey, I needed to get some thoughts out. Whatever may come in the next few hours, I am prepared. I know that after my appointment I have a fun day of adventures planned with my family so I have that to look forward to. I’m trying to stay hopeful but realistic. We’ll see what happens!

I’ll give the full run-down after I have time to process everything and get a spare moment to write, but now I need to go get ready–we have an hour drive this morning (which will feel like nothing after yesterday’s journey) so I need to calm my nerves and prepare for a crazy day.

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

 

Babysitting on Crutches

Now that I’m home for the summer (and beyond), I am finally able to get back to doing what I love…babysitting! Now, some people may laugh and snicker because this isn’t a “real job” (don’t get me started on the guy who told me I had to get a real job…and once I did, I made less and had less fun than sitting), but I really find it to be an enjoyable use of my time. I have always loved kids and being around them gives me a new perspective on life.

Things have become a bit more complicated in the babysitting department since my accident. I can’t be the super-cool babysitter who takes the kids out for ice cream…because I can’t drive. Even if I drove with my left foot, I would be hesitant to take the kids anywhere. In fact, when I do babysit, I have to ask either my parents or the kids’ parents for a ride, so that has made things interesting. But, somehow, I make it work. Sometimes I wonder why someone would ever ask me to sit for them when clearly I’m not the best pick, but I feel incredibly grateful to the people who do choose to look beyond my disability and still trust me to take care of their kids.

So, how does babysitting work, crutch-style? Well, many things are the same (play games, color, etc), but some activities need to be modified.

Here’s how I make it work:

-Choose activities that don’t require a ton of moving around, or be prepared if a lot of walking might be involved. Activities such as bike riding may prove to be difficult if the kids pedal faster than you can crutch, so opting for a walk or a trip to the park may be a better choice.
-Tell the kids what you need. I know that sounds weird since you’re supposed to be watching out for them, but if they know not to touch your leg or throw things at you, they’ll usually be careful to follow through with the directions. The kids I watch are so great about being mindful of my leg.
-Ask for help if needed. I babysit for a family with a baby, so I usually have to ask the older kids to help me if he needs to be carried somewhere. While I can carry things on crutches, I don’t think it’s safe to risk a fall while holding a sweet baby.
-Put safety first…for everyone. Don’t put yourself or the kids in a situation that could be dangerous. Carrying a baby is one example, but there are other instances when you need to do a check to make sure everything is safe. Common sense, people.
-Have fun! That’s the main thing. If you have fun and watch out for the safety of the kids and yourself, you’re almost guaranteed to have a successful time.

You see, crutches don’t have to stop you from doing what you want to do. I cannot even express my appreciation toward the families who still accept me, even though I’m a bit different now. I used to think that the crutches would mean that I’d be automatically thrown out of the “babysitter lists,” but we’ve all adjusted and made things work. Crutches do not mean that it is impossible to still do the things you love, you just might have to do them a bit differently  🙂