Dear Doctor, Welcome to My World

After experiencing one too many doctors, nurses, and techs that looked at me like I had twelve eyes when I told them about my RSD/CRPS, I thought I should write a little note to them. This isn’t for the awesome docs out there who know what I’m dealing with; it’s for the doctors who don’t understand. It’s for the people who write “RDS” or “Sympathetic Reflex Dystrophy” on my chart, pretending to know what they’re doing. Dear Clueless Doctor, Nurse, Tech, or other medical professional, this is for you.

Dear Doctor,

Hi there. It’s me, your challenging mystery patient. The one with the disease you’ve never heard of. I hope you choose to admit to the fact that you’re clueless, because that’s better than pretending. Trust me, it’s not hard to tell when you’re trying to make me think you’ve heard of it, when the first time you saw the letters “RSD” or “CRPS” was when you glanced at my chart before seeing me. I sincerely hope you take the time to look up my disorder and learn about it. You never know when you’ll have another patient like me, and it would be great if you could be able to tell them, with confidence, that you know a bit about this monster that we face daily.

I know that it’s hard to understand something so complicated, so bizarre. But please try to imagine what I’m going through. You don’t see the hours I lay in bed, crying, desperate for relief. You don’t see me as I try to get through a shopping center without someone making a comment about my leg. You don’t feel the sadness that I experience when I can’t participate in a social event. You don’t know the strength it takes to keep fighting, to keep living, when you are living with such a painful condition. You don’t know the heartache of wondering if you’ll ever get better. You don’t know the defeat that comes with each doctor who gives up on you. You don’t know what it’s like to be me, but please at least try to understand before you label me as “the crazy one” or tell me it’s all in my head.

When you see me and read about my diagnosis, please don’t just brush me off. Don’t attribute all my symptoms to my pain disorder. True, it can cause a lot of problems. But there are those rare instances where it’s not all about the RSD/CRPS. There’s something more, and if you simply dismiss my symptoms, you could miss something big. Don’t shy away and give up on me just because I’m not your typical cookie-cutter case. Please be willing to work, to investigate, to help me.

When I say my pain is a 10 out of 10, I’m not exaggerating. In fact, the pain is most likely even higher than that, but you confine me to those numbers. Just because I’m not screaming and wailing, that doesn’t mean I’m not crumbling on the inside. I’ve just learned how to hide the pain. While we’re at it, number or no number, please know that my pain is real. It is not in my head, nor is it a ploy for attention or a plan to get drugs. No, this pain is real. Have you ever touched a hot stove on accident? You know that your automatic reflex is to pull your hand away. For us, though, it’s like we are glued to the stove, unable to pry our bodies away from the misery. I feel like my body is on fire, and no amount of pain medication seems to put out the flames. Even if you can’t see it, my pain is real. Very, very real.

Please know that I’m not trying to be difficult. I’m not intentionally being high maintenance just because I feel like it. I need to advocate for myself, so please understand that there are certain needs that I need to be met. If not, things could take a turn for the worse. I need you to listen to me when I ask you to please not touch me, or to use a smaller needle, or to not apply ice to my body. I need you to hear me when I say that I need you to stop bumping my bed. I need you to educate yourself on my condition. I need you to accept my answer when I decline a treatment or a medication that I know I’ve had adverse reactions to in the past. I need you to allow me the freedom to have a say in the plan, because let’s face it, med school or no med school, I know my body better than you, and chances are, I know more about RSD/CRPS, too.

Now, I’m not trying to undermine the fact that you’ve gone through years of hard work to have your career. I understand that you are probably excellent at your job…when you have a case you are familiar with. But RSD/CRPS? It’s not something they spend much time on in med school. It gets tossed out in the whirl of more common ailments. Chances are, if you did happen to cover it in school, it was only a small paragraph in a book with a thousand pages. That being said, yes, I do probably know more. I’ve spent thousands of hours since my diagnosis scouring the internet, reading books, and talking to people to find out more information about this horrifying disease that is raging through my body. So while I respect the fact that you’re qualified to do your job, I need you to also respect the fact that I do know what I’m talking about. Don’t dismiss my ideas and concerns just because you have a big head from getting that special degree. Really, it’s okay to not know everything. I don’t expect you to be an expert on my little-known condition, but while I’m your patient, please try to learn and let me step in to give my two cents. I’ve done more than just look up my symptoms on WebMD.

I hope you realize that none of this is easy. It’s a nightmare to live, a pain to treat, and a challenge to comprehend. But if we work together, maybe we can figure out a plan that works. I hope you take this to heart, learn what I’m going through, and become prepared for the next time a mystery patient is sitting in your office.

Thanks for reading.

Sincerely,

An RSD/CRPS Warrior who is tired of not being understood

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.

Tired & Broken

Last night, I had a dream that I was in a familiar place, [the hospital, which is far from being my favorite place] with familiar faces [my old PT and OT]. I often find myself in this situation during my nighttime snoozes, and I always wake up with a feeling of defeat in the morning. It’s like my heart, my hope, is being crushed more and more with each time I have these dreams.

I think I’ve written about a similar dream before. Last night’s, though, was a bit different, filled with more care and hope. It was so real, so emotional, that I didn’t want to wake up. In fact, when I did wake up, I tried to force myself back to sleep so I could continue dreaming. Holding onto the moment. Feeling hope. But alas, my efforts did not succeed so I was left feeling like I had just tasted the first tiny bite of a delicious meal, only to have it be taken from me.

Here’s how it all went down [in dreamland, of course] : I was in a room outside the therapy gym, waiting to be seen. My mind was racing, my heart ready to explode from the swirl of emotions. “This is it,” I thought. I wasn’t going to leave until someone helped me. Finally, my Physical Therapist started walking in my direction. Bracing for a lecture about how I still wasn’t better, and how I was back there again, I gave her a weak, guilty, fearful smile. “I’m ready this time. I promise,” I told her. “I believe you. Now grab a snack so we can get started,” she replied. Surprised by her response, I found some animal crackers (random) in a cupboard, ate a few, and went into the gym.

I walked to the back of the therapy gym and saw my sweet Occupational Therapist (yes, she might have a slight influence in the fact that I’m studying OT…). She gave me one of those, “oh, you’re back again,” smiles while saying hello. “It’s nice to see you again. How are you doing? Are you ready to work?” This is when I broke down, releasing all the feelings I had been holding in. I fell to the ground and started to sob.

“I’m tired of fighting it. I’m so, so tired. I just want to get better. I want to be normal for once. Please…help me. Help me. I’m ready to work. I’ll do anything. Please.” Through tears, I felt a renewed strength as I surrendered my treatment into their hands. It felt so freeing, so hope-filled. It was like I knew that this was going to be the turning point. I was ready to stop fighting against my body and start fighting for my health, my happiness, my life.

And then I woke up.

Can you see why I was upset when my eyes flew open, jolting me from my dream? Those are the moments that I wish I could pull from dreamland and play out in reality. To have a plan, a place to turn to, a glimmer of hope that things would get better was indescribable.

It’s not too hard to figure out where this whole dream came from. I mean, they say you dream about things that you think about, and getting better is definitely high on the “Rae’s daily thoughts” list. The truth is, the last time I was at that hospital, trying to get my leg function back, I did fight it. I didn’t know how to deal with the pain and I was getting frustrated. When they sent me home, I’m sure the doctors and therapists wrote plenty of notes in my chart about my resistance to treatment. Those notes probably play a part in the reason why the hospital in NJ didn’t want to take me, even though at that point, I was ready.

The truth is, I am tired. How can you not be exhausted when battling chronic illness? But as tired as I am, if the opportunity arises to actually get help, genuine, comprehensive help, I have a storage of energy waiting and ready to fight RSD, to fight for my life. And that doesn’t mean I’m not fighting against the RSD now. I am. I’m doing what I can. But I certainly believe that if I were to be given another chance to do it right, I’d be able to fight better, work harder, and win this war.

I don’t know what the future may hold. I don’t know if I’ll ever find another doctor who is willing to work with me. I don’t know if that perfect PT or OT will pop into my life. I don’t know if this is a permanent disability, or if I’ll be able to one day walk again. But I do know this…I’m weary, broken, and ready for change.

{Photo Cred: Pinterest}

 

 

The Great Debate

Just a heads up…this might get detailed and gross. But I’m just being honest about where I’m at in this crazy RSD journey right now.

I was up most of the night in agonizing pain, which isn’t too uncommon in the world of RSD/CRPS. However, last night was one of the few times when I’ve seriously contemplated going to the Emergency Room. No, not for a cocktail of painkillers; I already know that those don’t work for me. Instead, I was going to go to have my growing amount of seemingly infected foot sores and ulcers checked out. Yep, they’re gross, they’re annoying, and they’re downright painful. And while they started back in January, I didn’t think much of them until recently when more popped up and they became hard to manage. I mean, with RSD, you never know what you’re going to get.

While I cried through multiple episodes of Grey’s Anatomy (AKA the best show ever), I contemplated the situation at hand…uh, well, foot. Do I got the ER? Urgent Care? Doctor? Well, I don’t have a primary care doc right now because I’m in that in-between (late) transition from pediatrician to adult doctor. The urgent care nearby is lovely, but I wasn’t sure if they’d know what to do. I try to avoid the ER as much as possible, for obvious reasons. I mean, who likes going to the ER? Nobody I know.

Okay, so even if I did figure out where to go, there was another problem in the way (besides the unpleasant time of night). How would I be treated? Would they have to touch my foot? Most likely, yes. Would they know how to handle my case? Seeing as how most people, doctors included, haven’t heard of RSD, I didn’t know if they’d be able to come up with a proper plan of attack. I wasn’t sure I was physically or emotionally ready for the pain, prodding, and questions that would follow me into the exam room.

I ended up not wanting to bother with doctors last night, so I finally took some Benadryl and knocked myself out. Of course, when I woke up, the pain had not subsided and the adventure continued. As I sit here with fluid oozing out of my compression stocking (sorry, graphic…be glad I didn’t attach a picture), the great debate is continuing. At some point I think I’m going to have to just bite the bullet and see someone, because I really don’t want this to lead to something more serious. Plus, trying to control the pain/leakage/etc is getting very annoying. But where do I go? Do I try to find a wound specialist? Should I just go to the ER when I get a free day? I don’t want to waste the time and money, only to be treated poorly or not given help. I also don’t want to overreact. I mean, maybe it will just clear up eventually? Maybe? I don’t know. School starts in a week though, so I don’t want to deal with it once that starts.

It’s easy (okay, easy isn’t the word…tolerable?) to get help for non-RSD related ailments. Strep throat, eye issues, stitches…bring it. But once RSD complications arise, it takes every ounce of courage, desperation, and insanity to get help. This would be so much easier if people in the world actually knew how to treat this complicated disorder. My concerns usually just get dismissed by people who don’t want to bother with trying to learn or understand what’s going on.

I’m sure more posts will continue if I figure out the winner in this debate. I have a feeling that if I have another nightmarish night, I’ll break down and take action. Because there’s only so much you can take before you snap.

Any advice from fellow RSDers? I feel like I’m being crushed between a rock and a hard place.

Staying Safe on Crutches

I read an article this week about a man who is trying to design a new kind of crutches. The “C” word [crutches] is probably what lured me in, but once I saw photos, I knew it wouldn’t work for my situation. It was a great idea for people with minor injuries, but not at all RSD friendly. I had hoped that it would be designed in some way that slips and falls were nothing to worry about. Maybe with special grips a way to balance the weight of the user. Perhaps there are crutch designs out there that fit this idea, or maybe they will be an invention of the future. For now, though, I have learned what I should and shouldn’t do in order to stay safe while on crutches. People who have been on them for a while generally have a good feel of what works, but for the newbies to the world of crutches, this is for you. Keep in mind that these are simply suggestions 🙂

Rachel’s Non-Comprehensive List of How to Stay Safe on Crutches:

• DO keep an eye on the ground. No, don’t stare at it while you’re walking, but take a glance every once in a while to make sure you’re not walking into a dangerous puddle or crutching on a slippery dryer sheet (I may or may not have learned that one the hard way in the laundry room at school…thankfully I avoided a full-on fall that time).
• DO pace yourself. It’s not a race. I mean, I like to go pretty fast on my crutches, but I still know my limits. Go at a speed you feel comfortable with, even if that means that people will have to wait for you. It’s better to go slow than to risk falling.
• DO have a phone nearby. In the age of cell phones, this is something most people do anyways. I (almost) always have my phone in my pocket or very close to me. No, it’s not so I can stay up-to-date with the latest Facebook posts. It’s so that I can call someone in case of an emergency. I’ve also learned this the hard way…the two times I’ve fallen in the past year have been the rare times when I left my phone in another room, and I had to lay on the ground until someone came to help. If I had an accident while home alone, things could take a bad turn if I didn’t have access to a phone.
• DO ask for help when you need it. This is something I don’t do enough, because I like to pretend that I’m 100% independent. Sometimes it’s better to just ask someone to get that heavy object off the high shelf instead of hopping on a chair to get it while standing on one leg.
• DON’T wear shorts or pants with loose pockets. Okay, this might just be an issue for me. If you crutch with the butterfly end of the hand grip screws facing forward like I do, they can easily get caught in your pockets if they’re too loose. This is what happened when I fell a few weeks ago while wearing my favorite elephant shorts. I guess a better remedy for this problem is to just make the butterflies face backward, but that just doesn’t feel as comfortable to me. Maybe I’m just weird.
• DON’T wear super slippery shoes. Uh, well, I guess that would be shoe, singular, since one foot would be in the air. Anyways, if the shoe bottom is slick, your foot might slide from underneath you. Yeah, it’s not pretty.
• DON’T use normal crutch tips during cold or rainy seasons. Maybe this is just my personal opinion coming out again. I mean, if you’re only on them for a week, it’s not a huge deal. But for long-term crutch use, it’s worth it to get crutch tips that are better designed to handle water. My very favorite crutch tips are RainGuards . They cost around 20 dollars once shipping is added in, but they’ve been a life saver for me. Seriously. They also have SnowBoots , which I might invest in for this winter. They’re durable and much safer than the typical water-trapping tips that come on crutches. And no, I am not being paid to promote these products. I just know from personal experience that they really work!
• DON’T do something if you don’t feel comfortable with it. You know your body and your limits. If going hiking for a full day through treacherous paths doesn’t seem like a great time while on crutches, don’t do it. Let your needs be known.
• DON’T let other people tell you what you can and can’t do. Oops, does that mean you should just ignore everything I’ve just written? Well, I did say do what feels right to you, so these are just helpful suggestions. But really, if someone says you can’t do something just because you’re on crutches and you know you can do it safely, don’t let them stop you. I’ve had to firmly say no to lots of people who have insisted that I use a scooter while shopping, for example, because I know that I’m perfectly capable of using my crutches to get around. Do what you’re comfortable with and don’t let people prevent you from doing it. Only you know what you can and cannot do.

Okay, I hope that helps. Basically, do what feels right to you. Except for the phone thing. That’s something that you really should have, especially if you’re a time-bomb RSD-er like myself, where the slightest fall can have extreme consequences. Until they can design the perfect pair of crutches, all we can do is work our way around the ones we have.

Stay safe, stay happy, and keep smiling, fellow crutchers 🙂

Left Behind

It’s that season again…every time I open Facebook or check Instagram, there seems to be another “back to school” post or photo. I see pictures of people I’ve known since they were toddlers announcing the college they’re going to, showing the world dorm pics, and getting excited for new beginnings. I look longingly at orientation albums for new RA’s or other college leaders, imagining what it would be like if I were healthy enough to be part of the fun.

I’m starting my Senior year of college in just a few weeks. That itself is an accomplishment because of the crazy amount of school I’ve missed through the years. But when I see posts from fellow Seniors, especially the people I grew up with, a feeling of sadness pours over me. You see, while they are flaunting their upcoming internships, counting down to graduation, and becoming stars on their sports teams, I am sitting in my living room with barely anything to show of the past few years of my life.

When I started college, I had big dreams. I wanted to be an RA, become involved in different clubs and groups, and spend time working and volunteering at hospitals and other places. I hoped to find lots of friends, crossed my fingers that a special boyfriend would come into the picture, and imagined happy days spent in the company of others. I made goals to achieve high grades and study diligently. I thought college would finally be my respite from my hectic high school experience. But on the night of September 3, 2012, all those dreams sank to the bottom of the pond, along with my ability to walk on my own.

There are some days when I just can’t help but feel left behind in all the college/life experiences. I mean, here I am, entering my Senior year and living at home. Jobless. Boyfriendless. Not at all living out what I had imagined. I mean, I don’t want to throw some huge pity party, because trust me, I know things could be a lot worse. But I do think that it’s okay to allow myself to experience these feelings of loss and loneliness.

My resume might not include all sorts of crazy jobs, internships, and opportunities like my fellow Seniors. My hand may still be empty and ring-less, with crutches tagging along instead of a man. My cell phone may only feature texts from my mom and from the local grocery store advertising the latest sales. My heart and mind may contain more scars than memories. But somewhere deeper than grades and classes and careers lies a different sort of adventure.

I carry with me my own story. My crazy roller coaster of a life, complete with treatment centers, hospitals, and operating rooms. My tear-shedding journey to get to the point where I am now. So even though I’m nowhere near the point that I thought I’d be right now, I’m still here. I’m still breathing. I’ve made it this far, so I have confidence that I can keep going, reminding myself that the only person I need to be better than is the person I was yesterday. Who cares if I’m not as brilliant or as experienced as those around me? They probably didn’t have to leave school every other year, move to different states for treatment, or spend more time in physical therapy than with friends.

We each have our own story to tell and adventure to go on. So even though I may feel left behind at times, I have to remind myself that life’s not a race…it’s a journey.

 

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.