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.

 

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}

 

 

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!)

Today’s The Day

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

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

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

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

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

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

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.

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.**

Kinesio Tape

I am a huge fan of Kinesio tape. Ever since I was introduced to it 8 years ago when I was at the Cleveland Clinic for RSD the first time, I’ve been hooked. The “experts” are still not positive about whether it’s just a placebo effect or if it actually does something physically, but either way, it works for me.

So what is Kinesio tape? Well, it’s a thin, stretchy tape made of cotton. It usually comes in a roll and you can cut it and make patterns depending on how it is going to be used. It’s sticky on one side and feels like fabric on the other side. You apply it like tape, just by peeling off the paper from the sticky side and placing it on your body. [Of course, it’s more complicated than just randomly placing it somewhere, and there’s a certain amount of stretch that needs to be used depending on the purpose, but in general that’s what you do.] You can tape for support, swelling, pain relief, etc. Supposedly it lifts up a layer of skin to help with circulation or something, which promotes healing and help to your muscles. Like I said, clinical studies haven’t reached any final conclusion about the effectiveness, but I give it an A+.

Technically you’re supposed to be taped by people who are certified in it, but I’ve learned how to tape myself. It’s much easier than having to find a therapist to always help me. [I hope to one day become certified in taping, so maybe that will happen somewhere down the road.] I’ve taped my sister a few times and she claims that it has helped her too! I buy it online, usually from Amazon. If you do a search for Kinesio Tape you’ll be able to find lots of places that sell it, and it usually runs between $15-20.

So how do I use it? Well, lately I’ve been using a lot of tape on my wrists, especially after long days of taking notes in class. I actually don’t think I would’ve been able to get through finals week last semester without it! The wrist taping that I do provides extra support and relieves some tension.I also use it for knee support on my left leg since it carries all my weight and tires out sometimes. I’ve had tape on pretty much every area of my body at one point or another. I use it on my back when I hurt it/throw it out of whack, legs, feet, arms, wrists…even my abdomen for pain and cramps. You can use it on your neck and other places as well. Just last night I taped my sister for a strained quad, and a few weeks ago I used it on her toes when she had an injury. As you can see, it has a wide variety of uses–and also colors! I currently have pink and blue 🙂

Even though my current flare has been mostly in my right leg, I have gotten a lot of pain and swelling in Leftie too. My PT taped me for swelling using a spider pattern.

Taping for swelling at the beginning of my current flare (2012).

Octopus taping on leftie in the hospital This was for swelling. The lines help direct the fluid flow out of my foot.

Awkward photo with my hospital chicken, but you can sort of see my arm taping here. At this point I didn’t have much function in my hands so my OT taped my arms to provide support and stretch in an attempt to pull my fingers outward instead of going inward, which is their natural RSD tendency.

Now, before you get your hopes up about this being some magical cure…it’s not. It does lessen the load a bit, but it certainly does not eliminate pain completely. Also, it isn’t an instant fix, so give it some time before expecting any results. If it’s not applied correctly you won’t really benefit, so make sure it’s done in the right way.

Good golly, have I said enough about this stuff yet?! What can I say…I’m just a big fan :). [And no, I am not being paid to promote this product…haha] Kinesio tape is pretty much harmless so it’s worth a try! Oh, but I was kindly reminded by someone today that some people can have skin reactions to the tape, so if you have particularly sensitive skin or a latex allergy, take caution. Most brands of tape are latex free but you can never be too careful.

I hope that helps for anyone who’s ever wondered about the awesomeness of Kinesio Tape. If you have any comments or questions (stories about personal experiences, questions about specific taping patterns, etc) feel free to let me know! 🙂

Thanks for stopping by!

Friday! :)

Happy Friday, World!

I had Stats this morning and now I’m done for the day-hooray! We had to enter in some data at a computer, so when giving instructions the Prof turned to me and said, “You can walk over there and do it, right?” Um, yes. How do you think I got to class? Really, people. Really. My crutches allow me to do pretty much anything a person walking on two legs can do. But thanks for your concern…

Today also marks six months since my last hospitalization! Another reason to celebrate. Six months ago I was on a field trip to watch the Cleveland Browns practice football, and my dad was on the way to the hospital to pick me up that afternoon. It’s crazy how time goes so fast. At the time of my discharge I still didn’t have full function of my hands or left leg back, but now everything is good to go! I still use my good pal Kinesio Tape every so often, but for the most part I’m back to my “normal.”

Left- The day I fell and my RSD spread to all extremities again; Right-Leaving the hospital!

Today I am thankful for warm clothes to protect me from the monstrous weather that decided to continue. I’m thankful for the opportunity to go home and relax this weekend, and I’m thankful that I’m almost done with a month of classes! Here’s to hoping that the weekend slows down and the weekdays speed up, because Spring Break will be here before we know it 🙂

Hope everyone has a great Friday! Thanks for stopping by 🙂