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}

 

 

Looking Up

This month marks one year since I slipped in my kitchen, causing a spread of my RSD/CRPS from my neck down. As a way to clear my thoughts and explain my experience, I am writing about my hospital stays during that time. This means you’ll see the good, the bad, and the ugly. Read on if you wish.

After leaving The Worst Hospital Ever, I arrived at the Cleveland Clinic, ready to go. Things started looking up from the moment I arrived. Here’s what happened:

Day 1 (Wed) : Well, I already described this crazy day in Rocky Roads, so that’s pretty much all that happened.

Day 2 (Thurs) : I woke up and stayed in bed for a while until someone came in to get me. I couldn’t move my hands to press the call button, and I couldn’t use my feet to get out of bed, so I stared at the ceiling for a while. Eventually, my Occupational Therapist, Jessie, came to my room. “Good morning!” she said in a cheerful voice. I was happy to see a familiar face, since she was one of my favorites there. “Welcome back. Are you ready to work hard?” she continued. I told her that I wanted to do anything possible to get better. She placed a hairbrush in my tender, swollen hands. “There you go, brush those knots out,” she instructed. I could barely keep my grasp on the handle but I gave it my best effort. Once I did what I could, she stepped in and helped. She then helped me change my clothes and move to my wheelchair. I had a full day of OT, PT, Psychology, and other activities. My psychologist tried to tell me that I had somehow “fallen on purpose to get out of having to go back to school.” I was disturbed by this accusation for a number of reasons. Really, though, if I didn’t want to go to school, I would have just dropped out. Simple. Some people just don’t think before speaking. By the end of day 2 I was able to use one finger to type, so I was finally able to communicate with my family through brief texting and online messages.

Day 3 (Fri): This day, once again, began with Jessie’s smiling face. It was my third day there, which meant I was way overdue for a shower. Jessie wheeled me into the shower room, helped me transfer to a shower chair, and assisted me in undressing. For a college-aged female, taking a shower while someone was watching me was slightly awkward, but I survived and smelled much better once it was done. After the shower I had PT, where I worked on some strengthening of my muscles. My PT also taped my arms and legs with Kinesio Tape to promote swelling reduction and increased movement. I spent the rest of day like the day before…lots of therapy and visits from the docs.

Days 4-6(Sat-Sun) : The weekend was quite boring. I had PT and OT on Saturday morning, but after that, I was given a break from therapy. I had a few visitors but really just wanted to be alone. The nurses urged me to talk to the other patients, but they had their own friends with them and I didn’t feel like socializing.

Day 7 (Mon) : Things started back again on Monday. I started with OT, where I was forced to clean both feet in a bucket of warm soapy water. My really bad foot had layers of dead skin that needed to be taken off, and the not-so-bad (but still bad) foot just needed some desensitization. I cried a lot as Jessie pulled my feet into the water and scrubbed them hard with a washcloth. I kept reminding myself of how much I wanted to get better, so it made it easier to tolerate. We had yoga on Monday, which was a big challenge. Our therapists stayed with us as we did the downward dog, warrior pose, and a variety of other exercises. I couldn’t to much that day but I gave it my best effort. In my other therapies I worked on picking things up with my hands, cleaning my feet, and strengthening my core. It was a tiresome day but I was getting stronger with each moment.

This was just the first week. I’m not going to bore everyone with the rest of my time in the hospital, but by the end of my stay I had completed many hours of therapy and I left on crutches. I was able to use my hands, even though they weren’t 100% better, and my left leg became stronger. I left without doing much work with the right leg (the “bad” one) because of time restraints. I was happy to go home after a few weeks of hard work and many tears.

 

Rocky Roads

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

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

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

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

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

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

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

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

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

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

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

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

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

Stop Bumping the Bed

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

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

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

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

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

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

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

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

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

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

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

Stay tuned as the roller coaster ride continues…

The Look

It happened again today. I was talking to someone about my plans for the future, mainly my career goals. As soon as I said I wanted to be an Occupational Therapist, I got the look. The look of pity, the “oh, honey, good luck with that” look. I guess that after seeing me with a foot the size of a small watermelon, they don’t think I can do it. I’ve been given that look by so many people–friends, family members, even doctors. Especially doctors. And you know what? One day I will surely turn that “uhh, good luck” look into a look of awe as people see me achieving my dreams, even with my challenges.

When I was in the hospital, my Occupational Therapist questioned why I was going into OT if I wasn’t even able to walk. “How are you planning to lift patients?” he asked, doubting my abilities. He didn’t think I would ever succeed at such a job, and he made that clear. I also encountered other therapists who had the same attitude. Even recently, I got the look by 2 doctors during my pain program evaluation.

Here’s the deal. I’ve been wanting to become an Occupational Therapist for years. I’ve had some pretty amazing OT’s in the past and they really inspired me. Even if I can’t walk, I have to believe that becoming an Occupational Therapist is possible. I’m not ready to give up on my dreams just because of this (relatively major) bump in the road. Yes, lifting patients may prove to be a challenge, but there are ways around that. Sure, people may give me that look as I try to apply for jobs, but I’m prepared to show them what I’ve got. Besides, OT involves a lot of upper body activities, and after 2 years on crutches, I’m getting pretty strong in that area.

I’m not going to lie and say that it never bothers me when I get the look. It does…sometimes. It bothers me when people truly doubt my abilities simply because I am on crutches. I do, in fact, have 2 working arms and 1 very strong leg, so it’s not like I am unable to do anything. I try to ignore the look, though, reminding myself that this is not the full story. There’s more work to be done and one day I’ll bust through their doubts.

I also won’t lie and say that I haven’t thought about alternative jobs. I have. I’ve pondered the idea of switching my major to psychology or something less physically demanding. Maybe an office job. But those things just wouldn’t be the same. If I switched career paths, I would be settling rather than going all out for my dreams. So while I will keep those choices on the back burner in case things take a sudden turn for the worst, they aren’t quite what I’m shooting for. No, I have a dream, and I intend to achieve it…looks or no looks.

When It’s Time to Let Go

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

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

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

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

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

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

Fine Line

In life, there are many “fine lines.” For example, there’s a fine line between being honest and being rude, or being neat and being obsessive. Here’s a fine line that I ponder frequently…the line between toughness and abuse.

I don’t want to place blame or anything here, I just want to write some of my thoughts. There have been some instances in my life, particularly in healthcare settings, where I believe this fine line was crossed. People said they were just trying to help, but they did so with roughness and hurtful actions.

In the past 8 years I have gone through many various treatments and I’ve seen dozens of doctors for my RSD/CRPS. Some were very helpful, but others came with the connotation that having this disorder was my fault and that I needed a dose of “tough love” so I could just “get over it.” I had plenty of therapy sessions where I wailed and screamed in pain, but was forced to continue, even to the point of passing out. I’ve had physical therapists who smiled at my pain, telling me how it was a good thing. And I’ve had people who tried to tell me it was all in my head, blaming me for everything.

I understand that there are situations where you need a good dose of tough love. I know that this is a challenging disorder and sometimes many times there will be tears and groans. I am not ignorant to the fact that you often need to go through hell to reach remission. But there is one thing I do not understand, and it’s the concept of blaming someone for their illness and trying to scare them into “magically getting better.”

One time, I was in a pool therapy session when I was kicked in my bad leg by another girl. I started to cry, and the therapist who was leading the group told me that I needed to cut it out. Crying was not acceptable in the pool. She said that it was good desensitization for me, and I needed to get my act together. I’m sorry, but since when are people not allowed to show emotion when they are in great pain? And to be punished for it? I later received a lecture about how it was unacceptable for me to cry, and I was given a low score (on sheets that kept track of progress) for my behavior that day. I’d like to see her give birth unmedicated without shedding a tear. After all, they say CRPS is rated higher than childbirth…

There was another day when I was working on standing up. I was having a hard time staying stable and admittedly I did use my arms to keep me from falling. I held onto the wall for support and tried to stand correctly. My PT got angry with me and tied my hands behind my back. I felt a rush of anger and anxiety and gave the biggest tug of my life on the rope that was holding my hands together. In that moment I felt vulnerable and unsafe because I had no choice in the matter. And, of course, tying my hands back did nothing to help me progress in therapy.

A big concern that has stayed with me is the way in which words have been used against me. I go to therapy hoping for help, yet I am belittled and torn down verbally. Couldn’t master the art of standing? I was called a brat. Had trouble walking in the hallway? Little s***head. I was told that I wouldn’t make a good OT, and that I was lazy. Not hard-working enough. My body was even criticized. All by healthcare professionals who should at least have one ounce of compassion and control over their words. I don’t see how throwing expletives at a young girl while she is writhing in pain and attempting to work on therapy does any good. I just don’t.

So where is the line? Would being called out for crying be considered simply “being tough?” Should people with RSD/CRPS be blamed for their situation? Is it appropriate to degrade patients? Am I just too sensitive? These are questions I think about, especially as I make plans for the future. I’m not sure I’m willing to put myself in another situation where these types of things will happen, which is part of the reason I’m hesitant about having new therapists and trying new treatments.

I do know that when I am an Occupational Therapist (because you’d better know I’m about to prove them wrong), I will be treating people as humans and placing no blame. I will use kind words toward everyone, even when they frustrate me. Even when I have to push my patients to overcome their challenges, I will do so with encouragement, not negativity. I believe people are worth more than being objects of blame and abuse.

There are lots of fine lines in the world, but I hope that one day abuse in medical facilities (and everywhere else) will be completely nonexistent. Until then, I’ll do the best I can to be the change and speak life to others.

When I Walk…

Despite doctors telling me otherwise, I firmly believe that one day I will walk again. It may take time, it’ll definitely involve some sweat and tears…but I will do it. I wish I could just hop up out of my chair and walk down the hall right now, but that’s not going to happen. However, once I find the right treatment(s), I know it will.

Sometimes Every night as I go to bed, I think about the future. I play different scenarios in my mind, knowing full well that it will never be exactly how all the cards will play out. I think about how life will be when I walk, but then I have that small, sinking part of me that tries to be realistic and plan ahead for if that doesn’t actually happen. I shut down that voice pretty quickly because I don’t believe that this will be my forever fate, so instead I fill my thoughts with dreams of better days…

Here are some things that I look forward to when I finally drop the crutches and embrace my freedom:

• Being able to sneak up on people without them knowing I’m behind them (have you ever tried to move quietly on crutches? People always know you’re there).
• Carrying a mug of hot tea to my room that I can enjoy while watching a magnificent sunrise (carrying things on crutches? No prob. Carrying hot tea up a flight of stairs? Chances are, half the cup will be on the carpet before I get up there).
• Being a better babysitter. Actually being able to hold kids and carry them instead of having other people do it for me. Running outside, riding bikes, going to the park.
• Going somewhere and not sticking out. Not having people give me tips on treatment, or how to use crutches (did you know crutches are slippery when wet? Someone told me that just yesterday, as if I was clueless about the two aluminum poles that have been practically attached to my body for the past 19.5 months), or asking if I’d seen a doctor about that leg of mine.
• Hopping in my car and going for a nice, long drive. Just me, music, and the road ahead. Perfection. (Sure, I could drive with my left foot now, but I feel like I’d be more worried about losing control or hitting the wrong pedal, so that would take away some of that perfect drive).
• Not being treated differently or having people worrying about me. It seems like once the crutches disappear, people forget that there was anything wrong so they go back to seeing me as a human and not as my disability.
• Laying out at the beach and running into the water to cool off. Crutches don’t work so well in the ocean.
• Not being told all the things I can’t do. When people see me, they automatically think that I am not capable of doing anything. The manager at the cafeteria takes my plate from me, telling me I can’t carry it (probably because she doesn’t want me to drop and break her exquisite dining hall dishes). I’ve been turned away from volunteer opportunities because they didn’t think I was capable of helping, even though proved them wrong. I’m looking forward to not being judged based on my assumed ability in the first three seconds of meeting someone.
• Snuggling under the covers on a cold evening instead of sticking one leg out.
• Wearing long dresses and jeans, pants and cute shoes. The whole one leg rolled up look isn’t too attractive. I’ve been asked if I was trying to start a new fashion trend with the way I wear my clothing-if you want to follow, go ahead, but this is not a trend.
• Going for a run on a crisp summer evening to clear my mind. Feeling the breeze in my hair and jamming to some tunes while getting my heart rate up and body strong.
• Going on vacation and actually enjoying every moment rather than worrying about getting bumped or having problems with my leg. Traveling the world. Seeing new sights. Going on adventures to far away places. Doesn’t it sound lovely?
• Being an Occupational Therapist. Helping people overcome their struggles while being able to empathize with them. Watching as they defeat their monsters and embrace their own kind of freedom. I can’t wait to see the glimmer in their eyes when they look back on how far they have come.

When I walk, I plan to make these dreams come true. Whether it’s 5 months or 50 years from now, they will happen.

I. Can’t. Wait.

Peace 🙂

Pain Rehabilitation, Part 2 {CRPS Treatment Chronicles}

Yesterday’s post was getting to be too long so I thought I’d split it up and go into more detail here. Hopefully this gives everyone a deeper insight into what life in pain rehab programs can be like. My experience particularly describes the Cleveland Clinic Children’s Hospital for Rehabilitation Pain Program. So here are some more questions and answers…

What is PT/OT like in the Pain Program? Generally you will have physical and occupational therapy with a few other people. If the group of patients is smaller, your therapy groups might reflect this as well. Generally you’ll start with some desensitization-brushing your body, using lotion, vibration, etc. Once this is completed, you’ll start with stretches and exercises. You’ll do things like pushups, situps, obstacle courses, animal crawls, stairs, or whatever else they decide to have you do.

Where do you stay while in the Program? Usually patients stay in the hospital for their first two weeks. You’ll either be in your own room or with a roommate. The rooms have a bed, bathroom, TV, sink, and cabinet where you can store your belongings. You’ll have nurses that check on you periodically to make sure you’re okay. When you transition to day hospital, you will no longer be staying in the hospital. You will stay with a parent/guardian either at home (if you live nearby), at a hotel, or at the Ronald McDonald House. I usually stayed at the Ronald McDonald House and loved it there. You can meet lots of different families, there is a home-cooked meal every night, and it’s pretty cheap. It’s about a ten-minute drive from the hospital, so not too bad.

Can you parent(s) stay with you while inpatient? Nope. You’re on your own, kid. Parents can come visit during the evenings but they have to leave by a certain time. This can be a hard adjustment at first, especially if you’re younger and haven’t been away from your parents much, but you’ll survive. I promise. The 2 weeks of inpatient go by so quickly and soon you’ll be outta there.

Do you get to leave the hospital during the week if you are inpatient? Only if you have an outside appointment or a field trip. You can’t just go shopping or hang with your parents at a restaurant during the week. HOWEVER, on Sundays you are allowed to go on pass, so you can do whatever you want for a few hours. You’ll be given goals to work on but for the most part it’s a free day.

Can you have electronicdevices?Yep! You can bring your laptop, iPad, cell phone…whatever you want, you just can’t have them during therapy sessions. When I was there they took our phones at bedtime and gave them back the next day at dinner, but we were allowed to keep everything else in our rooms. They even give you a safe to put your valuables in.

What do you wear in the program? Comfy athletic-type clothes. Leave your jeans, skirts, and dresses at home, friends. For 3(ish) weeks you’ll be sporting t-shirts and shorts, with sturdy tennis shoes to complete the outfit.

What is Day Hospital like?It’s pretty much the same thing as inpatient, only you sleep and eat breakfast/dinner somewhere else. You arrive at the hospital in the morning (8ish) and leave at 5. You go to groups, therapies, and lunch with the rest of the patients just like you did while inpatient.

What do you do during school?When you first arrive at the hospital they tell you to bring schoolwork with you. The hospital teacher can talk to your school about getting work, and that’s what you do during that time. I did my college work during school time and my Professors allowed the hospital teacher to proctor my exams, so that all worked out.

Where do you go on fieldtrips?Wherever they decide to take you! I went to a local museum one time that I was there, and another time we went to the Cleveland Browns training camp to watch them practice. I’ve heard of groups going to the zoo, nature centers, aquariums, and other exciting places. You usually only go once during your stay and you are asked to work on therapy goals while out. For example, when we went to the museum, I had to make sure both feet stayed on the ground when I was using my walker. At the Browns practice I had to go on a walk with my PT. They jut try to make it more fun for you.

Are the staff nice?Yes. Well…most of them 😉 . They all want you to succeed and get better, so they’ll push you a lot (and maybe make you cry), but in the end you’ll be thanking them when you’re happy and healthy!

Any more questions? Ask away!

 

 

Pain Rehabilitation Programs {CRPS Treatment Chronicles}

I am a repeat customer of the Cleveland Clinic Children’s Hospital for Rehabilitation. Sometimes my parents joke that they should own a wing of the hospital now with how many medical bills we’ve had from that place! Ha! But really, this has helped me in ways that no other treatment could. There are other pain rehab programs, usually for kids, that have a similar concept so some of what Cleveland does is also seen elsewhere.

The actual rehab hospital is pretty small. There are only three floors in the whole building, and most of the therapy takes place in the same area. There are three main parts of the hospital-the pain program, the baby rehab unit, and the rehab pavilion.

Part of the hospital-as you can see, it is pretty small (apologies for the bad quality of the photo)

I’ve been on the rehab side and in the pain program, but I think for this post I’ll focus on the pain rehab program.

The pain program focuses on using physical exercise to reduce or remove one’s pain. Therapists will take any assistive devices away relatively shortly after a patient is admitted. Sometimes they allow you to go from a wheelchair to using a walker, other times they take everything and have you walk through the pain. If you have crutches, they will probably be removed within a few days. Each case is different, but in general, they try to get you up and moving on two feet as soon as possible. If the pain is elsewhere, say, a hand, they will make sure you use that hand and get it moving again. They don’t really like for the patients to be on many medications, and instead they teach pain management techniques such as acupressure, visualization, and breathing.

In the pain program, you will be with a group of other kids who have similar issues. The groups aren’t usually too large-I think we had about 12 when I was there, which was more than they had had in a while. There is an emphasis on not talking about your pain with others because this can cause the “I’m worse than you” comparisons. They try to get your focus away from pain as much as possible, so talking about it only causes you to be more aware of it.

The treatment team for each patient in the pain program includes physical, occupational, and recreational therapists, a psychologist, a doctor, a teacher, a nurse practitioner, and a social worker. You and your parents will usually have one meeting with the whole team after your second week in the program. During this time you will discuss your progress and what they recommend for you. Sometimes this involves lengthening your stay by a week, other times they tell you that you are well on your way to remission, which is a wonderful moment.

Okay, time to stop rambling. Here is what an average day looks like:

A Day in the Life of a Pain Program Patient

• 6:30-7:00 AM If you are inpatient, you will wake up in a lovely, air-filled hospital bed bright and early. A nurse will probably be hovering above you, trying to find your blood pressure cuff and sticking a temperature probe in your mouth. Once vitals are done, you’ll either be able to catch a few more minutes of shut-eye or you’ll be told that breakfast is waiting. You’ll get dressed, make your bed, and head down the hall to the table for a delightful breakfast,which probably will not even be the one you ordered (because they have a habit of mixing things up).     *Note: If you’re outpatient, you’ll probably still be sleeping at a hotel or at the Ronald McDonald House since you don’t have to be at the hospital until 8am.     
• 8:00 Time for group! An OT or PT will come to the unit and round everyone up. You will then take a quick journey downstairs to the day hospital, where you’ll pick up those lucky ducks who have reached that part of their stay. Once everyone is together you’ll go to the rec therapy gym. You’ll have an hour-long group which changes each day. Groups include goal writing, stretching, circuit training, nutrition, exercise, or whatever else they decide to throw in. By the end of this group you should be awake and ready for a busy day.
• 9:00 This time slot can have a number of possibilities. You could have a group, like music therapy, or school time. You could also have PT/OT or psych. It changes for each person.
• 10:00 Grab your swimsuit and goggles, because it’s pool time! Everyone in the program has pool together, unless they luck out and have a psychology appointment or something. Pool can be scary for the first week, especially if you have sensitivity and water bothers you. Don’t worry, though, because the water is warm and actually feels quite nice once you get used to it. If your first pool day is on a Tuesday, as it usually is (because your first Monday is a bunch of admissions stuff), get ready to get your sweat on. It’s aquacise day. Yes, I did cry on my first pool day because we spent the entire time moving and grooving. It can be tiring but they usually play fun music for you to keep things fun. The other days in the pool are usually spent doing relay races, swimming laps, and doing other exercises. Oh, and if you accidentally get kicked…well, that’s just extra sensory. But that only happened one time while I was there, so if you watch where you are you should be good to go.
• 11:00 After drying yourself off from the pool, you’ll head over to school, PT/OT, or psych. It’s a joy, especially when your stomach is rumbling and you’re eagerly anticipating lunch!
• 12:00 Lunch! The moment you’ve been waiting for since you finished breakfast. Okay, maybe not. But you get an hour to chill and hang out with your new friends while enjoying the most appetizing hospital food imaginable. (Actually, their food really is pretty great compared to most hospitals. Don’t even get me started on how it was my first 2 times there-basically, the grilled cheese was more like a grease sponge.) Of course, you still have to work on your therapy rules, like using that painful hand or keeping both feet on the ground (I got called out for this one quite a few times). When you’re done eating you can chill in the hang-out room, go to your room (really I don’t think they like it when you do this, but I did anyways), or work on stretches (you’ll get bonus points in the hearts of the PT/OT’s if they see you actually working on what they told you to).
• 1:00-4:00 Back to work. You could get lucky and have rec therapy, where you can do cool art projects. You might also find yourself in PT/OT, a group such as mind and body (where you talk about the mind/body connection and smell cotton balls while learning about aromatherapy, for example), or maybe you’ll even be sitting across from your psychologist, talking about your amazing lunch. Chances are, you’ll be doing a combination of some of these things during this 3-hour period of time.
• 4:00 On one day of the week, 4:00 means cooking group! This was my favorite because we got to combine my favorite hobby (cooking) with therapy. Sometimes our creations didn’t turn out quite as expected, but we were asked to at least take a bite of everything. If it’s not a cooking day, you might have family group, where your parents/siblings come hang out and do something with you (unless your name is Rachel and your parents were 3 hours away and therefore didn’t attend. Hey, I was 18 and didn’t care anyways). Sometimes you might make a craft or play a game, and there will probably be some sort of discussion about families thrown in there. On other days there is usually rec therapy or something to do for the hour.
• 5:00 If you’re in day hospital, you get to peace out for the day! Enjoy your non-hospital food and comfy bed. If you’re still inpatient, however, you’ll be greeted on the unit by nurses who are informing you that dinner is ready. You’ll sit down with your buds, talk about the wonderful day (while being sure not to mention the word “pain”), and enjoy dinner. You can almost breathe a sigh of relief, but then you remember-your day is not over yet, because…
• 5:30 Evening RT! Rec therapy time for everyone who is staying at the hospital. You’ll usually play a game or do a craft, and if you’re lucky, some of the kids from the rehab unit will join. It’s fun to meet them and play games together.
• 6:30-10:30 Free time! If your family is nearby then they can come visit, otherwise you can spend some quality time by yourself. Sometimes the kids on the unit will play wii or something. If you’re like me and trying to take classes while in the hospital, you might have some homework to catch up on. If not, have fun watching TV, reading, or wasting time on the computer.
• 10:30 A smiling (or maybe not smiling) nurse will peek into your room, make sure you’re winding down for the night, and ask for your cell phone. Yep, when I was there we were only allowed to have our phones from 5:00pm-bedtime. Maybe they’ve changed that rule…I didn’t like it. Thankfully I had my ipod touch with me and they never took that away! You  might already be asleep by this time from your long day, but if not, you’ll be laying in a dark room so hopefully you’ll drift off into sleepyland soon. But be prepared, because the whole thing is going to start over in the morning.

…Then, if everything goes well and you do enough jumping jacks, untie your shoes every time you take them off, and meet all your goals, you should be smiling, walking, and on your way home after 3-4 weeks of the program! Hooray and high fives for you, because you just made it through some of the toughest weeks of your life!

There have been a lot of people who have been greatly helped by this program. It got me from a wheelchair to walking two different times, so I’m a fan. Well, not really a fan, because it’s a lot of hard work and other garbage, but I love how it helped me get my life back. Despite my less-than-stellar experience in 2012, I had a better one this past August that made me respect the place a bit more.

Wow, I did not intend for this to be so long! Whoops. I’ll go into more detail about the program sometime this week. Hope that helps anyone who has wondered just what it’s like to be in a pain program!

**As always, this is just from my perspective and results/experiences may vary.**