Your Story Matters

There are some days when I wonder why I am dealing with this pain. I question why I’ve been through so many challenges in my short life. Sometimes I get frustrated by of my present circumstances, thinking that I stumbled into a life of bad luck. But then I remember this: It’s not all about me. The struggles that I face have the potential to change the life of another person. Because of my pain, someone else may be able to receive a proper diagnosis. Because of my past, someone else may be able to find freedom from their addiction. If I have to go through the darkness in order to bring light to someone else, then I will gladly do so, because this life is not all about me.

When I was first diagnosed with RSD, I was in 8th grade. I had wonderful teachers who took the time to make accommodations for me when necessary. They asked how I was doing, offered to help, and extended grace to me for the many missed assignments. Because of my pain, they learned about RSD. About a year after I graduated from that school, my 8th grade teacher’s daughter began to have pain with no known cause. Knowing my story, my teacher brought up RSD, and soon her daughter was diagnosed. My parents and I were able to offer support and recommend a hospital that could help her. If I hadn’t gone through my own battle with this monster, I would not have been able to help that girl, and she probably wouldn’t have received treatment as quickly.

When I was 17, I graduated from a program that completely transformed my life. I entered the doors broken and lost in eating disorders, depression, anxiety, and a self harm addiction. Eight months later, I was free from those struggles and found myself sharing my story with others. There was a girl who happened to hear my story, and she ended up applying for the program herself. Although we had different issues, she was able to find her own freedom because of my brokenness.

In 2012, I received an email from my 5th grade teacher. While I hadn’t yet been diagnosed when I was her student, she heard about my story through my mom and other teachers after she left the school. She eventually changed career paths and went into the medical field. The email was to let me know that she was giving a presentation about RSD/CRPS at a large EMS Expo. She wanted to help spread awareness for this condition after hearing about my battle with it. I ended up going with her to the expo, and I was able to share my story with a room full of healthcare professionals. Each person in attendance was given an orange packet filled with information about RSD/CRPS and how to treat patients with the disorder. Because of my story, these medical professionals know how to handle complicated cases such as my own.

When I was first hospitalized for full-body RSD/CRPS in 2006, I had an amazing Physical Therapist. She spent so much time learning about this monster and figuring out how to treat me. About 2 years ago, she told me that she was working on her doctorate and was spending a whole term studying CRPS. She was able to learn more and teach other therapists about this disorder because of her experience when I was her patient.

Last year, I received an email that my dad forwarded to me from one of his friends. He was talking about how he had met a doctor  in the area who knew about RSD. This doctor used to work at a large hospital (*cough* The Worst Hospital Ever, if you’ve read any of my posts on that), but he has since opened his own pain center. He said that he had a young patient who was hospitalized for RSD/CRPS in 2006, and that it was partially because of this patient (uhh, that would be me) that he opened his practice. He hadn’t heard of RSD/CRPS until I was his patient, and he wanted to be able to help more people with their pain. So basically, my story led this doctor to leave the hospital setting, open up his own center, and treat patients with CRPS and other chronic pain. Woah.

These are just a few of the stories I’ve heard/experienced of ways my story has impacted others. I’m not saying that I’m the magical missing piece in these stories. It’s possible that these situations may have had the same outcome, even if I was never part of the picture. However, the fact that I was able to play a role in the help and healing of others makes me feel grateful for my struggles. If my pain even changed just one life, then it would be worth it all. It’s not all about me.

It’s easy to get so wrapped up in ourselves and our pity parties, forgetting that there are so many others out there who are in pain. You never know when you will touch a life or change a person’s path, simply by living out your own struggles. I’ve been able to walk alongside others in their own battles because of my own challenges. I’ve been able to offer a listening ear that truly understands pain rather than simply pretending to know. My story has caused others to receive help faster than they would have otherwise, it has informed many more doctors about RSD/CRPS, and it has changed lives in numerous other ways. I’m not saying that it’s all because of me, because it’s not, but these great things are coming out of the darkness of my life. Beauty from ashes.

 Your story has meaning. Your life has purpose. Even if you feel like no good could possibly come out of your pain and struggles, I guarantee that you are touching lives in ways you don’t even know. Because of your story, someone else may be able to find a correct diagnosis. Because of your pain, lives may change. You just never know how your life will impact that of another person, just by choosing to stay alive. By choosing to fight. By choosing to simply be who you are.

Your story matters. Never forget that.

{Credit: Holley Gerth}

Not All Wounds Are Obvious

People always think that I’m limited by my crutches. They assume I can’t carry things, go long distances on [one] foot, or do household chores. They see me doing something and they want to jump in and help. Truthfully, I don’t feel limited by my aluminum sidekicks. Sure, I do stumble across the occasional task that is not safe/smart/doable on crutches (like holding a newborn), but for the most part, I can keep up with the average person.

As I was vacuuming the other day, I realized that there is something beyond what people can see that does limit me. It’s one of those things that isn’t talked about, or that people tell you to just “get over” rather than offering to help. While cleaning the house, I realized this:

My invisible challenge limits me far more than the visible one.

What is this invisible challenge that I’m talking about? Well, the answer to that is anxiety. You see, people see my crutches and immediately ask if I need help, but they don’t see the anxiety that is really causing problems. They don’t see the times when I’m paralyzed by fear and sit on the couch all day, not even getting up to grab some coffee. They don’t see the thoughts and worries that roll through my head when I’m invited to a social event. They don’t see the sleepless nights, the sweaty palms, the racing heart. Even if they did see it, there’s no simple fix. They can’t just carry a piece of it for me like they carry my grocery bags.

I’ve struggled with anxiety for as long as I can remember. When I was young, I didn’t know why I was always so afraid or why my mind never stopped racing. I thought I was just some messed up kid. As I grew older, I realized that it stemmed from anxiety, and more importantly, I discovered that I was not a freak. I learned that I was not alone in my struggle.

A few months after this latest RSD/CRPS flare began in 2012, I was in a physical therapy session. I was so frustrated and overwhelmed because I wasn’t making any progress. I had been through the pain program there twice before and I was up and walking in no time, but the third time around, things were a lot different. After three weeks, I was still unable to put my right foot on the ground. My PT asked me to do an exercise where I had to simply place my foot on a bolster pillow and roll it back and forth. Simple, right? Well, I just couldn’t bring myself to do it.

“Why does it take you 43 times to do things right?” my Physical Therapist asked, obviously frustrated. Then she paused and said, “I think I know why. I’ve been thinking about this all week. I think you have a lot of anxiety, and it’s really holding you back. I know that you’re not intentionally avoiding exercises; your anxiety is just preventing you from being able to do them. I’ve never had a patient with as much anxiety as you, and I am getting to the point where I’m really not sure there’s anything else I can do to help you until you get this taken care of.”

I was really surprised by my therapist’s words. I hadn’t connected my anxiety with my lack of progress, but once she said it, things began to make sense. It’s like the days when I know I have to get out of bed, or do the dishes, or go get the mail…but I physically can’t bring myself to do it because my anxiety is so strong. I knew that I had to put my foot on the pillow. I knew that I needed to sit with my legs uncrossed. I knew that I couldn’t just swim in the pool without actually doing my exercises. But something prevented me from following through, and that was anxiety.

My conversation with my PT opened my eyes to realize that there are deeper struggles that I sometimes accept as just a part of who I am, when really, life isn’t meant to be that difficult. She recommended medication, which I began shortly after. It did little for the anxiety, so I discontinued it a few months later, but it was a reminder to be more conscious of my thoughts.

Through many hours of therapy, I’ve been able to overcome some of my anxiety. I can talk to people, go out in public, and stay home alone without freaking out…well, most days. But that doesn’t mean that I’m free of struggles. I go to war against anxiety daily. I fight battles that people can’t see from the outside. They see the crutches and assume that those are the worst part of my life. They think that my only problem is my leg. They don’t see what’s underneath.

If you have anxiety, know that you are not alone. Anxiety is a monster, and its force can feel strong. But you are stronger. Having anxiety doesn’t make you some crazy person. It doesn’t make you weak. It doesn’t make you weird. I know how the thoughts can spiral and the world can feel like it’s closing in. I know the attacks, the fears, the frustration. Anxiety can grab us and make us believe things that aren’t even true. But we can fight back. We can step in and conquer the monster, one step at a time.

{Via Picture Quotes}

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…

Dear Doubter

I recently wrote the letter, Dear Doctor, Welcome to My World, a message to the doctors I’ve dealt with who were clueless when it came to RSD/CRPS. Today’s letter goes out to all the everyday people who claim our pain is in our heads. To the friends who don’t understand. To the family members who think we’re exaggerating. To anyone who has ever doubted the pain we feel. Dear Doubters, this is for you.

Dear Doubter,

Hey, it’s me. The girl with the pain that’s “all in my head.” The one you’ve blown off and called a faker. Well, this “faker” has a few words for you. The first matter to be discussed is the reality of the situation. I don’t care what degree you have, or what people you’ve met. There is no reason to tell me that the pain I feel is simply made up. Have you been in my shoes? Have you stayed up through the night, unable to put out the fire in your body? Until you have, you do not have the right to judge or comment on my condition.

Let me ask you a question…have you ever had a headache? How about a stomachache? Can you see those ailments? Not really. But somehow, when you come down with such calamities, it is expected that people believe the discomfort you are experiencing. How is it different for my situation? Just because you can’t see the pain, that in no way means that it isn’t there. And for me, it’s not as simply as a one-day pain streak. No, I’m not that lucky. This pain is chronic, meaning long-term. Imagine having that stomachache, plus the headache, in addition to other pain throughout your body, the highest pain imaginable. Now imagine having it for days, months, years on end, with no sight of relief. That is what I am dealing with. And somehow you still doubt me?

It’s true that I don’t always show my pain. I don’t bring it up in every conversation, I’m not always screaming and crying. I do have moments of laughter, and I try to keep a smile on my face. I know that this lack of displayed pain may make it seem like I’m not really hurting. After all, how could someone in that much pain be able to do normal things? If it was really that bad, I’d never get out of bed…right? Wrong. It is that bad. And I do want to stay in bed, but I can’t. I can’t because I have things that need to be done. I can’t because people like you doubt me and criticize me if I’m not pulling my weight in society. So, despite the flames that are raging through my body, I do my best to put on a mask and do what needs to be done.

Please know that not all illnesses are visible. Not all pain is obvious. There are things under the surface that I struggle to keep hidden. I know that you don’t understand what I’m going through. In order to understand such a horrible feeling, you’d have to go through this pain yourself. This disease is not something I would wish on my worst enemy. But even if you can’t understand, you can give me the gift of belief. You can give me the benefit of the doubt and believe that my pain is real.

I need you to believe me. It is so hard, so exhausting, to be perceived as an attention-seeking faker. I need you to stop doubting and start believing me when I say it hurts. I need you to be on my side, to fight for and with me rather than against me. I need you to put away your so-called medical expertise, your past experiences with people who really were faking illness, and your personal issues and look at me. Believe me. Trust me. It’s hard enough to feel as if you’re on fire, and dealing with doubters is like adding more fuel to the flames.

Support is powerful. It’s much easier to fight a battle when you’re not alone. Thanks for reading…and please consider these words the next time you’re tempted to doubt what you do not see.

Sincerely,

The Girl With The Pain

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.

 

Stop Trying to Fix Me

  Yesterday my friend (who I know reads this-so hello!) and I were having a conversation about people who try to give their opinions on your medical matters. Offering treatment advice, trying to diagnose you…you know what I’m talking about. I told her that I’m okay with her giving me advice, only because she was in treatment with me and knows what I’m going through. But not everyone’s advice is as welcomed or appreciated. This morning I stumbled across this brilliantly written statement by MrsWelches Warriors. The truth behind it is so real, and it puts many of my thoughts and feelings into words.

You see, people always try to fix things. Broken car? Take it to a mechanic. TV stopped working? Call someone to fix it right away. Strep throat? Make a beeline for the doctor to get some medicine. We see what’s broken and our instinct is to fix it. But chronic illness is not the same as a broken car. It’s not as easy to repair as a television, nor is it cured by medication like strep throat. No, chronic illness is in a whole different category, one where the “fix it” gloves must come off. 

People with chronic illness don’t just receive a diagnosis and do nothing about it. Well, maybe some do. But most people choose to fight. They see doctors, they read books, they google treatment options. They try to see what works. Once all options have been exhausted, then they choose to accept their new way of living. So when someone says, “have you tried this?” it’s like pouring salt into a very tender, aching wound. Chances are, we’ve tried it…and if we’re still “not better,” that’s probably because it didn’t work. We don’t need the reminder that we’re incurable.

Eventually we come to a point where we choose to accept the diagnosis that is given. We adapt, we make changes, both physically and mentally. We deal with the struggle of remembering the way things used to be, while learning how to make the present situation work for us. We know that this just might be how the rest of our lives will go, but we also entertain the idea of a better future. We research, we look at possible options. We do what we can, what is comfortable and tolerable.

We don’t need people who have never been in our shoes telling us what to do, where to go, or what “magical pill” to swallow.

Before you throw a chronic illness warrior an article from the Weekly World Dum-Dum claiming to “cure” our ailments, take a minute to think. Would this really be helpful? Did they ask for my opinion? Have they already tried this treatment? Unless we’ve asked, we probably don’t want your advice on how to “cure” our incurable illness. Thank you very much.

Friends, family, strangers in the grocery store…stop trying to fix me. Just let me deal with my diagnosis in the way I know how. Stop breaking me even more by giving me your unsolicited, ridiculous opinion. I know my body, I know what treatments are available, I know what has and has not worked. Unless I’ve directly asked for your help, please keep your comments to yourself.

 

 

Doctor Avoidance

After an 8+ year adventure with various health issues, you’d think I would be totally fine with going to the doctor. It’s just part of life, right? As common as a trip to the grocery store. But that is simply not the case. I hate going to the doctor. Okay, actually I do like it when they can actually help me, but that’s a rare occurrence.

My next appointment for the pain program I was looking into is coming up next month. Honestly, I have been meaning to cancel it for quite some time. They didn’t seem to be too eager to help me. Instead, they gave me a list of 5 other doctors and therapists to see before going back to them in September. They also had some standard treatment plans that seemed to go against the typical recommendations for RSD, which is slightly concerning. It’s not like this place is down the street from where I live, either. No, it’s a 12 hour drive. I don’t think I want to endure that long of a trip, only to be turned away. Again. I had placed so much hope into this program though, so cancelling the appointment seems like slicing the last strand of hope.

I think that’s why I’m so hesitant to set up any more appointments, at this place or elsewhere. I don’t like getting my hopes up so high and imagining a better future, only to be tossed aside or told that there’s nothing they can do to help. My PM&R doctor here turned to the internet for answers, but ultimately told me she didn’t know how to help. The other clinic that I banked on near my house (that administers Ketamine infusions) told me I was too severe to be helped. Cleveland gave up on me and sent me home. The local hospitals don’t know what to do with me, and I haven’t found any reliable therapists nearby. Sure, some people have recommended doctors and therapists, but it’s usually those people/places that end up letting me down the most.

In short, yes, I am absolutely avoiding doctors and therapists right now. I’m not in a place where I feel okay enough to take another risk on someone. The let-down of a bad appointment is tough to deal with, and I don’t want to go through that again right now. Does that make me a horrible patient? Maybe. I mean, I’ve been told that before so it’s not too far-fetched. But I’m doing what I feel is right.

I’ve already tried PT, both inpatient and outpatient. I’ve done OT, Aquatherapy, SEMG, Biofeedback, Reiki, Tunneled Epidural Catheters, a Spinal Cord Stimulator, TENS units, medications…you get the picture. And that’s just for this current flare. If none of those worked, why keep banging on the door of hope, expecting something else to?

Let me say this, as I’ve said before: I am not giving up. Trust me, as long as I’m breathing, I won’t give up. I still believe that a cure is coming soon. If not that, I’m trusting that there will be an acceptable treatment down the line. I have hope, however naive it may be, that I will not be on crutches forever. When the time feels right, and when a treatment/doctor/therapist seems promising enough, I’ll navigate those waters again. I’m still searching for help…looking at ratings of doctors online, digging deeper into their qualifications. I don’t think another trip out of state is in the cards right now, but if someone nearby becomes an option, I might be willing to take a chance. Maybe.

Each person has their own journey. Some spend their lives traveling to different appointments, storming offices until answers are found. Some people choose to accept life as it is and work around their challenges. Some people give up completely, or so it may seem. I think that deep down, we know ourselves. We know our bodies, we know our capabilities. Sometimes, we have to take a break. We avoid, we cancel appointments, we shy away until the time feels right. Sometimes we just need to focus on things aside from the pain, the medication, the let-downs.

And sometimes, that just has to be okay. At least for now.

A Ray of Sunshine

There are some people in the world who just make life difficult. You know the people I’m talking about…the ones you dread coming into contact with. But then, on the other side of the spectrum, there are those people who simply make life better just by being around. The ones who get little acknowledgement but do a great deal of wonders for the world.

This summer, the janitor at the building I worked in was one of those people. Kind, thoughtful, and always ready to cheer you up. He hardly gets any recognition for his work, but he is always ready to give of himself a little more.

People like this man are like rays of sunshine leaking light into the darkness. When he met me, he noticed my crutches and asked what happened. I told him, and he gave me a big smile and encouragement that things will get better. He said, “don’t you worry. You’ll be walking and running again someday.” Now, there are the people who say things like that to weasel their way out of an awkward situation where they don’t know what to say. But the way that he said it was different. It was filled with heart, filled with hope.

The next week, he gave me a new nickname…Kryptonite. It took me a minute to realize the play on words that was going on, but when it clicked, I actually liked it. It took the usual “crip” or “crippled” name and added a fun spin. I appreciated having that name rather than being called “the girl on crutches.”

I soon learned why this man’s words seemed so genuine, so heartfelt. He told me a bit about his life, explaining that he was never supposed to walk. Born with the umbilical cord wrapped around his neck, he endured a great number of medical problems in his early life. To add to that, his mother passed away shortly after giving birth. You would never know about this man’s struggles by simply looking at him. He works with a smile, does his job well, and always cheers people up.

We need more people like this in the world. People who aren’t afraid to put their needs aside for the sake of another person. People who see the joy in life rather than dwelling on the things we can’t change. We need more rays of sunshine in this dark and depressing life.

Take some time to be kind to someone today. A smile, a kind word of encouragement, or a sincere compliment can go a long way. You never know who needs that extra burst of sunshine.

{Photo Cred: She Wears Many Hats}

The

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.

 

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!)