“If You Really Wanted to Get Better…”

“If you really wanted to get better, you’d try any treatment, regardless of possible risks.”
“If you really wanted to get better, you’d try harder.””If you really wanted to get better, you’d just drop those crutches and walk already.”

I can’t even count how many times these words, and more, have been spoken to me. I’ve gotten lectures about how I am not trying hard enough to get better, or how I must not really want to get better since I’m still on crutches. I’ve had therapists tell me that my parents were wasting money on me because I wasn’t working hard enough. I’ve had psychologists blame me for preventing myself from reaching remission by not trying everything possible or not giving it my all. “Tell us when you’re actually ready to get better,” they all say. “Otherwise, we’re wasting our time.”

A fellow RSD-er and I were recently having a conversation about how it’s not as simple as these people make it seem. They’ve never personally experienced RSD, so they have no idea the inner battle that goes on. There’s always a sacrifice that must be made when encountering new treatments. It’s not just a matter of stubbornly refusing to try something. For every new medication, there’s a list of possible side effects. For every surgery, you have to weigh the potential risks. Each experimental treatment brings a new list of fears and questions. Every therapy session requires an increase in pain in hopes that maybe it will help. It’s not just like grabbing a magical pill off the shelf and instantly becoming healthy and free.

If someone came to me today and told me that they had a cure for me, no strings attached, of course I would take it. But that simply doesn’t exist. There is no cure. There are no options that don’t require some sort of tradeoff–whether financially, physically, emotionally, or otherwise. It’s just not the way life is.

RSD presents itself differently in each person, and a treatment that worked miracles for one person may not be so fabulous for another. This creates an extra challenge, because you never know if something will work for you or not. It’s like gambling on your health…you have to decide if the potential gains are worth the cost.

To my doctors, family, and friends…YES, I do want to get better. I do want to walk again, ride a bike, go for a run. I want to sleep with both legs under the covers and go into a store without being judged. I want to be pain free, to actually get a full night of uninterrupted sleep. But I also don’t want things to get worse. I don’t want to deal with side effects, with wasted money, with time spent in treatment that ends up having no results. It’s not as easy as it sounds to just take a pill, or to simply throw my crutches down and run laps. It’s not a light decision to take time off from life, to go into the hospital, or to try an experimental treatment. So yes, I do want to get better, but I know that this desire is not without a cost.

If wanting it alone could make me better , I would have been running marathons by now.
If wanting to win a billion dollars could make you win the lottery, we’d all be rich by now.

But this is real life, not fairytale land, and it’s just not that simple.

Try Harder?

I have an incurable disease. Incurable. Unable to be cured. Yet the pressure is still on for me to try harder, to be more determined, to just get better already. People ask why I’m still on crutches. Parents tell me that I just need to be more dedicated to working hard and getting better. Doctors send me from one treatment to the other, all pushing me toward this idea that maybe, maybe someday I will reach remission. And when I’m not making progress, or when I’m getting worse? Well, somehow that’s all my fault, or so they say.

Where is the line? The line between continuing on this exhausting path of seeking remission and accepting the fact that sometimes, remission just doesn’t happen. The line between holding on to the faint bit of hope of walking and being hopeful for good days, even with the crutches. Is there a line? When is enough, enough?

I’ve had a few years of remission during my RSD/CRPS journey, so I know what it’s like. I think part of the problem is that they know what it’s like, and that it’s possible, too. My parents, doctors, friends, family…they all wonder why I can’t seem to “try hard enough” to get back into remission, when they know I’ve done it before. “This treatment worked when you were younger,” or “this procedure worked miracles for so-and-so,” they say. But now is not then, and I am not them.

The truth is, despite what my family and treatment team seem to think, I have tried. I have worked hard. I let them poke me, drug me, work me to the point of fainting. I’ve had countless procedures, medical stays, pills, and therapy sessions. I haven’t just been lazily sitting on the couch for the past 2 years (although that’s what my life has seemed to come down to lately). I worked, I did my time. So why is it that the word “try” is still being thrown in my face, day in and day out?

“You should talk to your therapists and tell them you’re actually willing to try this time,” says my mom. “I really think you should try this new treatment,” my doctor tells me. “Have you tried this miracle pill?” my friends ask, telling me about the latest infomercial they saw on their television. Try, try try. When is it okay to just rest, without people having expectations or assumptions?

Try. Try. Try. I did. I tried. And now I’m tired. And I’m nervously swaying on the tightrope of decision…do I do as they say, and somehow “try harder,” or do I simply live the best life I can, even with my disability? I’m not Superwoman, I’m not an invincible pincushion. After a while, the most I can do is try to get out of bed and dress myself in the morning. That is “trying hard” on some days. So why do people only notice the progress I’m not making, rather than realizing what an accomplishment it is to actually face the world each day?

I’m not trying to say that it’s impossible to reach remission. I’m not saying it isn’t good to seek treatments. All I’m saying is that there comes a point when trying seems to do more damage than just accepting what life has handed you. And I think I’m almost at that point…

{Photo Cred: Photobucket}

Hitting a Wall

It seems like there’s a constant pattern in my life these days…one good day, one bad day. One good night, one bad night. The cycle continues, and it’s so frustrating at times. Sure, it’s better than all bad days, but I usually find myself trying to do damage control from the day beforehand, even on my good days. So if my posts are rather up-and-down, that’s just because my life is one giant roller coaster that I can’t seem to get off of.

After yesterday’s doctor appointment, I felt a renewed sense of hope. I was ready to attempt PT again. I was looking forward to a great future. When I checked my e-mail this morning, things changed. There was a message from my dad, telling me about his conversation with my specialist. I had asked my dad to talk to my doctor because I just didn’t know what to say. Eager to get into my medical business, I’m sure, he gave him a call today. After a rather lengthy conversation with the doctor, these are some of the things my dad told me…

“He was not optimistic about significant improvement.”
“He said, ‘if she was my kid at this point I’d go to [insert yet another doctor, for a different treatment, several hours away from my house], even though she has heard horror stories about it.'”
“His suggestion is to postpone the Fall semester of school.”
“The sooner, the better with regard to treatment.”

Obviously this is a lot different than my original plans. My dad set up an appointment to be seen by my team in mid-October, but it sounds like they don’t think they’ll be able to help. Part of me wants to cancel the appointment and just continue with school like none of this ever happened. I mean, nobody sounds too hopeful about my condition right now. The emotional chaos is tough to handle, going from high hopes of being well again to not being sure if anyone will help me.

The other treatment option that was suggested is one that I’ve been hesitant about for a long time. It’s becoming more popular in the RSD community, but I’m still not sure I want to try it for many different reasons. Travel, money, stories of people getting worse, not wanting to get my hopes up…I just don’t want to try yet another thing if it isn’t going to help. I really think that intensive therapy at the rehab hospital could help, though, but nobody seems to agree.

In addition to being unsure about treatment plans, I’m still not completely convinced that I want to drop out of school yet again. True, I’m only taking one class, but if this is delayed then my applications for grad school could be postponed another year. I was so excited to get back into the classroom and begin learning yesterday, and it seems like it will be an incredible class. Do I really want to give up that last sense of normalcy just because there’s a small chance that I’ll get back into treatment? I’m not sure.

I feel like I’m hitting a wall in every sense of the phrase. Physically, emotionally, mentally…it’s exhausting. Is it worth the turmoil and the letdowns for me to continue pursuing any help? This is why I had been trying to avoid doctors, but the ER trip a week ago sparked this craziness, with each doctor telling me to see someone else. It’s a chain reaction.

As I sit here wallowing in my thoughts, I’m reminded that things could always be much worse. A young girl whose story I’ve followed for years just found out that her cancer came back. I know other people who are dealing with various surgeries, illnesses, and battles that are bigger than my own measly problems. So as my heart aches for them, I’m counting my blessings and hoping for the day when all pain and struggle is gone…for us all.

 

Here’s to the Good Docs

The other day I posted this about what I wish doctors knew. It was aimed at the docs of the world who don’t know a thing about my condition, but try to act like they do. Well, for today’s post, I’d like to give a shoutout to those rare gems who actually care. The doctors who may not know everything, but do their best to help. The ones who listen, who research, who have your very best interests at heart…not just the time they’re spending on you or the money they’ll gain.

After my ER fiasco last week, my pediatrician’s office called me to check in. (Yes, I am a Senior in college and I still see a peds doc, but he’s really amazing.) They wanted me to set up an appointment just so my doctor could see what was going on. I obliged, so this afternoon, I found myself sitting in the toy-filled waiting room, ready to hear what my doctor had to say.

After waiting for just a few minutes, a nurse came to get me. “Ouch, that looks like it hurts,” she said, commenting on my leg. While I was being weighed, another nurse popped her head out of a room. “Yikes, are you sure you don’t want a wheelchair?” she remarked with concern. “No, I’ve been on these [crutches] for 2 years, so I think I’m okay,” I replied, wondering why I’d need a chair for the short distance from the waiting area to the exam room. Skipping all other vitals, I was taken back to a room where the nurse asked the usual questions about why I was there and what medications I was currently on. Once I sufficiently answered each inquiry, I was left alone for a few minutes until the doctor was available.

“Knock knock,” I heard, then saw the friendly, familiar face of my doctor. I’ve been seeing him since I was probably 4 years old or so, so he knows a lot about my situation. “Let’s see, I read the ER notes and they thought everything was okay. How are you, really, though? I know that they don’t know a lot about your condition, and I am no expert on it either,” he said. I told him about my foot ulcers, talked about what had been going on since I last saw him over a year ago, and let him take a look. He listened intently as I went through my concerns, then asked how he could help. He admitted repeatedly that he didn’t know a ton about RSD/CRPS, but he made it clear, as always, that he was willing to do whatever I needed. After a while of talking, we reached a decision together. He thought that it would be best for me to go to my specialist and try to get back into intensive rehab. I’ve been fighting against rehab (and doctors) for so long, but when he said that that’s what he felt I should do, I felt comforted and reassured. At the end of the appointment, he let me go without even paying. “This one’s on me,” he stated with a genuine smile. This man is proof that even after seeing dozens of rotten doctors, it is still possible to find a good one. They’re not all bad and scary.

So, to the great doctors of the world like mine, I would like to say thank you.

Thank you for being willing to listen, not judge. Thank you for checking in on how I’m coping rather than trying to jump in and fix what is broken. Thank you for sticking up for me, for being willing to do whatever it takes to see me succeed. Thank you, thank you, thank you, for admitting that you are no genius, you do not know everything. Thank you for being kind and caring. Thank you for taking extra time out of your busy day to sit with me and figure out a plan. Thank you for encouraging me, giving me hope rather than leaving me more confused. Thank you for staying by my side, even when I’m an out-of-the-box kind of patient. Thank you for doing research, for trying to learn what you can about my condition. Thank you for caring more about my well-being than your paycheck. Thank you for being the rare gem in the pile of rocks, the doctor who goes above and beyond. Thank you for sticking to the heart of medicine, for remembering that “warmth, sympathy, and understanding may outweigh the surgeon’s knife or the chemist’s drug,” as stated in the Hippocratic Oath. Thank you for seeing me as more than a chart, or a number, or a dollar sign. Thank you for seeing me as a human, with real problems and real emotions. To the amazing doctors of the world, thank you. Thank you for being you.

I truly wish more doctors could be as genuine, caring, and sympathetic as the man I visited today. Maybe then people would actually get better instead of feeling the defeat of not being believed or understood. Maybe then a trip to the doctor would bring a glimmer of hope rather than a feeling of dread. Maybe then more cures could be found and lives could be restored. I sincerely hope that more doctors learn how to put aside their own egos to become humble and ready to help rather than demanding that their way is best.

Today I am thankful for my incredible doctor. Even if the coming days are rough, I can hold tightly to hope, knowing that there is someone in the world who has my back and who will stop at nothing to see me overcome my illness.

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.

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.

 

 

Vanishing Hope

This is post #4 about the events of this time last year after I fell 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.

The day after my unfortunate encounter with Dr. Know-it-all, my parents began making some phone calls. First to my old Physical Therapist, who worked at the children’s hospital. She moved away shortly after I “graduated” from PT when I was younger, but we have stayed in touch so she gave us some good information. We spoke to the doctors that she recommended and set up a tentative appointment. The only problem was that the appointment wasn’t for a few weeks, and we didn’t really have time to spare.

We then talked to a woman at a nearby medical center. She and her team were familiar with RSD/CRPS and they said they would be happy to admit me and help. They offered Ketamine, along with other treatments, so they were willing to do what they could. The woman came to my hospital room just a few hours after speaking to my mom. She chatted with us for a while, set up a time for me to be admitted later that day, took some photos to send to her team, and left. We were so thrilled to have met someone who knew what was going on…and who wanted to help! My mom began to pack our things and we grew excited about leaving the Worst Hospital Ever.

Right when we had everything packed and ready to go, the woman from the medical center called. She explained that she had shown the doctors the pictures of my body, and they determined that my case was too severe to be taken. Talk about confusion and a total let-down. I was at one hospital that was telling me I wasn’t “bad enough” to stay, but then the one that wanted to help me said I was “too severe.” Okay then.

Right around the time when I was dealing with the disappointment of not getting the help I was so eager to receive, I had a reality check from the man next door. I knew that he was in his last days because there were lots of hushed voices as people went in and out, saying goodbyes and keeping him comfortable. Soon the moment came where he took his last breath. I could hear the nurses talking about cleaning him up and letting his wife have some time with him before they took him away. My heart ached as I thought about what the family was dealing with, and suddenly my problems seemed so small.

Despite the fact that I still had breath in my lungs (although, if we’re being real, there were many moments during that time that I wished I could be the one who finally received relief from my pain), I still had a dilemma to deal with. My hope was shot to pieces and I didn’t know what the next step would look like. I was told repeatedly by doctors and nurses that I needed to leave the hospital, but there was no way that I was going to be able to go home in my state. We prepared for that, should there be no other option, but I wanted more help and more answers.

We eventually called our old friends at the Cleveland Clinic. Okay, so “friends” isn’t exactly the right word…torturers? Helpers? Doctors? Usually they were all of the above. My dad talked to different people, wondering if they had any advice. They knew me from my repeated stays and they also knew that I needed help. They agreed to admit me since we were at the end of the rope. The catch? I had to be at the hospital with all the paperwork signed and approval of insurance by 3:30pm the next day.

This deadline opened up a new set of questions. Would we make it by 3:30? Would they let me stay at the Worst Hospital Ever until the next day? How would I even leave the hospital to get there? Would I be able to handle a 3 hour drive in the car?

I rested more calmly that night, still trying not to get my hopes too high in case things didn’t work out but feeling encouraged that there was a tentative plan in place. The questions still loomed, but I decided to wait and figure everything out in the morning.

Come back tomorrow to read about the rest of the adventures at the Worst Hospital Ever…

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…

A “Normal” Diagnosis

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

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

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

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

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

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

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

Ketamine {CRPS Treatment Chronicles}

Ketamine seems to be the buzz word in the CRPS community these days. It is a strong anesthetic, often given by IV. It is said to calm and sort of “reset” the nerves, with the goal being decreased pain. People with CRPS can receive outpatient infusions of Ketamine every so often, or there is sometimes the option of a week-long continuous treatment that is done inpatient. Some countries offer a fully comatose week-long infusion, but that has many risks so it is not allowed in the US at this time. There are lots of possible side effects, as well as insurance/cost issues, so it is usually not the first choice of treatment. Ketamine is usually given along with other medications to reduce side effects.

When I was on Ketamine, there wasn’t much research done on it but my doctors were willing to try anything. I was twelve years old and had full-body CRPS. I hadn’t responded to other medications and things weren’t looking great, so they chose to move me to the ICU and start a week-long drip after reading about a case online that had success with it. I was hooked up to numerous wires and tubes, and I was only semi-conscious throughout the infusion. I have few memories of this week in my life, but my family has told me stories. Apparently I acted like a monkey, developed an accent, and went on a rant about Lucky Charms?! It’s probably good that I don’t remember all of that :).

Ketamine and a few stuffed animals on my hospital bed

I had physical and occupational therapy during my Ketamine infusion, and I made some progress while not totally coherent. I think I was less anxious and on-edge, so I’m sure my therapists appreciated that. My pain levels decreased while on the drug but they soon escalated once the drip was discontinued. There was some lasting improvement though- by the end of the week I was able to move one arm and my jaw, something that was not possible before the Ketamine.

Would I try Ketamine again? Maybe. I have my hesitations because of side effects, cost, and the fact that it may not work for me again. Plus, it is hard to find a doctor in my area who is willing to administer the medication. I guess it would take some deep thought before I signed the papers and consented to another infusion of this stuff.

Would I recommend it? Sure. I’ve known people who were helped tremendously by this medication. If you have the proper resources,  and understand the risks, go for it. The inpatient infusions tend to have better success at long-term pain control, at least from what I’ve heard, but I know the outpatient drips are easier to manage and still provide some relief.

Any other questions? Feel free to ask! If you have had experiences with Ketamine, I’d love to know if it helped you or not. The more information we can share about these treatments, the better!

**Disclaimer: I am not a doctor, nor am I an expert on this medication. Please talk to your doctor before making any treatment decisions. Also, this is only my personal experience, not a generalizable description. Results may vary.**