Darkness Behind the Masks

With the latest (heartbreaking) news about Robin Williams, depression and suicide seem to be hot topics these days. Since these are two issues that are common among the RSD/Chronic Pain community, I thought I would take a moment to discuss them. I understand that there is a lot of controversy regarding these sensitive subjects, so just bear with me.

Depression. It’s something that a lot of people struggle with, but many are too embarrassed to ask for help. I myself have battled this monster for many years. At the age of 15 I found myself locked up in a psych ward for a month with various doctors talking about my so-called “depression.” At first, I was in denial and got defensive and angry when doctors tried to throw this label onto my charts. I didn’t want to be “depressed.” I didn’t want to be “different.” I didn’t want to be “weak.” The truth is, depression does not make one weak. It’s not something to be ashamed of. It is a very real struggle. Not a cry for attention, not “just a bad day.” Depression is a nasty monster that has the ability to consume you and destroy your life if you let it. But it doesn’t have to be that way. There are resources out there–people to talk to, medications to take, treatments to try.

Depression is common in the RSD community. I think part of that stems from the idea that RSD is not curable. This makes people think that there is no hope, nothing to look forward to. It’s hard to watch your life spin out of control while you feel like you can’t do anything to stop it. As hope dwindles, depression sinks its teeth in even deeper.

While it’s true that RSD is incurable, I do believe that there is still hope. As long as you have breath in your lungs, there is hope for you and a purpose for your life. Sometimes it’s hard to see that, though. It’s hard to see the faint glimmer of light as you find yourself diving deeper into the dark tunnel of depression.

Sometimes, depression and the many other challenges of life become too hard to bear. People find themselves desperate for relief, aching for the pain to end. I truly believe that some people use suicide as their way out, not because they want to die, but because they want the pain to stop. Life becomes overwhelming, and with no real hope of things getting better, people take themselves out of the game.

Suicide is a gut-wrenching tragedy. I know a few people who have committed suicide, and they all seemed so happy on the outside. Football stars, popular kids, brilliant scholars. For whatever reason, they found themselves staring into the black hole of depression and hopelessness and ended their lives in an attempt to end the pain.

The truth is, we don’t always know how someone is feeling inside. Take Robin Williams, for example. He brought so much joy, so much laughter to the lives of others…yet he found himself completely devoid of happiness and ended up taking his life. Things aren’t always how they seem on the outside.

People are really good at hiding behind masks. Pain Warriors wear the “I’m fine” masks quite well so people don’t see the agony they are facing. People with depression try to “be strong” and hide their struggle so as not to be a burden to others or be perceived as weak. It’s too easy to put on a facade to protect those around you and give the illusion that you have everything together.  In reality, not many of us really have our lives together. We all have our skeletons in our closets, our masks piling up. Before comparing your life to that of someone else, be sure you know who they truly are. And if you suspect that someone might be having a rough patch, reach out to them. Let them know that you care, and that they are loved. Don’t leave them in their darkest hour.

If anyone out there is staring at the end of their rope, please reach out. Don’t hold it in. Don’t try to pretend that it’s all okay. Get help. Call a friend. Call a hotline. There are resources available for you. It’s not too late.

Some helpful phone numbers:

National Suicide Prevention Lifeline
(800) 273-TALK (8255)

Crisis Call Center
800-273-8255 or text ANSWER to 839863

National Hopeline Network
800-SUICIDE (784-2433)
800-442-HOPE (4673)

No matter what you’re facing, remember that there are people out there who care. You are not alone…ever. If you need to talk to someone, feel free to contact me, call one of the hotlines, or reach out to a trusted friend. I know how it feels to be so desperate for relief. I know the sorrow, the hopelessness, the agony of depression. But I also know that there are certain joys in life that help make the tough times a little less horrible. The giggle of a baby, the warmth of a delicious meal, the colors of a sunset…all these things make this chaotic life a bit easier to bear.

Whatever you do, don’t give up. Better days are coming, I promise. You are never, ever alone.

How to Fall and Still Survive

I fell today.

It’s funny, really, since I was just writing about how happy I was that I’d made it a full year without any major accidents. But, as evidenced by the fact that I’m still able to type this post, today’s fall was minor in comparison to the (not-so) great fall of 2013.

Just like last year, the incident happened without any warning. One minute I was in the office at work, looking for something, and the next minute I found myself hugging the floor, spewing various not-so-nice words to contain my tears and screams. In that moment, I was determined to make this fall different. I wasn’t ready to give up my freedoms, so I kicked into full-on fighter mode.

“Just breathe,” I told myself. “In, out, in, out.” Some interns were nearby when it happened so I sent them for water, not wanting an audience. “Keep it contained. Don’t let it spread,” I thought, pain searing through my leg. I began moving my hands in an effort to prevent them from stiffening. I was dizzy and nauseous but tried to stay alert. I soon looked up to find my mom and her friend standing above me. I guess it’s a good thing that I work for family, because if I had fallen at a “normal” workplace, things might have been a bit more awkward.

The interns came back with my water and I took small sips while still on my hands and one knee. I didn’t feel like I could get up just yet, so I sent everyone away as I tried to compose myself. Finally I was able to sit up on the floor, then transitioned to a chair. After more water and a few sour skittles, I was feeling ready to stand. My right leg, the one that’s been bad for a while, was even worse, but I managed to get back up relatively unscathed elsewhere.

So, when dealing with a situation when you’re face-down on the ground, what do you do?

Here’s my list of how to survive a fall:

1. STAY CALM. Getting all worked up isn’t going to help the situation.

2. BREATHE. In, out, in out. Smell the roses, blow out the candle. This goes with number one because it helps you keep your cool.

3. LET YOUR NEEDS BE KNOWN. Do you need some water? Help getting up? Time alone? If people are around, let them know how they can help.

4. TAKE SOME TIME. Don’t try to rush to get up. If you’re dizzy, you may end up passing out.

5. DISTRACT YOURSELF. For me, eating some skittles was helpful because it took my mind off the situation. Of course, I had to wait until the nausea disappeared so I didn’t toss the candy, but it was a good distraction.

6. TAKE ACTION. If you have emergency meds, take them. If heat works, find a way to get a hot pack or warm towel. Ice is generally not recommended for RSD patients, but if that’s what works for you, use it. Be proactive and stay ahead of the game.

I’ve had to take it easy today because my knee is pretty destroyed and swollen, but I am so thankful that only my right leg was affected. As I know from experience, it could have been a lot worse. Truly, I am beyond grateful to have function in my hands and left leg right now. With a ticking time bomb like myself, you never know what’s going to happen.

Stay calm, stay safe, and keep smiling, friends.

Behind the Wheel

For the past 2 years, I have been relying on other people to drive me everywhere. Since the accident in 2012 left me unable to use my right leg, driving became a bit of a problem. I wasn’t sure if I’d be able to handle the physical requirements of being behind the wheel, and I didn’t know if it was technically legal to drive left-footed. Well, the other day, I finally set up a time to go driving with my dad, just to see what would happen.

We were supposed to go to a nearby school parking lot to practice yesterday, but my parents ended up making other plans. Our outing was then changed to this afternoon. I was excited and nervous as my dad drove us to the school. For so long I had hoped that driving might become a possibility, and I didn’t want to have my hopes squashed if this didn’t work. Still, I thought it would be better to try and know than to never even take that chance.

My dad parked the car and I got out, hopping to the driver’s side. I adjusted the seat, making room for my right leg which was crossed over the left. Pretty soon, I was ready to go.

It took me a moment to remember how everything worked. I was in my dad’s car, not my own, so I had never driven it before. I shifted into drive, pressed the gas pedal, and went on my way.

I did a few circles around the parking lot before deciding to add in some new challenges. Going around so many times became boring, and I knew that driving on the road would involve more than that. I practiced parking, then backing up. My dad reminded me that I needed to make sure I was an alert driver, so he called out random times for me to stop suddenly, simulating a situation in which an animal was crossing in front of me or another situation where I’d need to stop.

After about 20-30 minutes, I decided that I had done what I  had originally set out to do: see if it was possible for me to drive. The answer was yes, I could drive. I was happy to know that if and when I am ready to become insured again as a real driver, it won’t be totally out of the question.

Of course, I would love to call up my car insurance company and ask to be insured again. The independence of driving is so enticing, and I’d love to at least be doing something “normal” for my age again.  The opportunity to drive would open up all kinds of new possibilities–going to the store, not waiting for someone to take me to babysit, never having to ask for a ride…it would be great. However, driving costs money, which is something that I am a bit tight on these days. As a Senior in college, I’m sitting on a ton of loans that need to be paid off and I don’t have a stable, full-time job. So there’s that.

My dad has offered to drive me places whenever I need to. I don’t think he’s completely sold on the idea of me driving again. For now, I might continue to take him up on his offer, at least until I have more steady income. But it’s an encouraging feeling to know that one day, I will be able to drive by myself again.

When we ended our driving session at the school, my dad told me I could drive home. My neighborhood is about a stone’s throw away from where we were so it wasn’t a huge deal, but still, I was on the real road with other cars around me. For a split second, I actually felt normal.

For those of you who might be wondering if driving will ever become a possibility in your life again, I hope this brings you some hope. Of course, you should always check with your doctor and maybe even a driving school before going back on the roads, but it’s not impossible. Everyone has a different story, but there are ways to gain independence, even with obstacles. Adaptive devices can give you the ability to drive with your hands or put a gas pedal on the left side rather than the right. And hey, soon enough they’ll be having driverless cars so we won’t have to worry about it at all!

RSD/CRPS, you thought you could knock me down. I’ll show you how strong I am by blasting through every barrier you throw my way. You chose the wrong girl to mess with, so watch out. I’ve got my fighting gloves on and my keys in hand.

Thanks for stopping by–wishing everyone a wonderful day full of smiles and happiness 🙂

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!)

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…

The Worst Hospital Ever

This post is a continuation from One Year, a 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…read on if you wish.

After waiting in the ER for hours, I was finally admitted and taken to a room. It was the middle of the night so I was tired, in pain, and feeling very vulnerable. I screamed as I was wheeled down the hallway and into my (not-so) luxury accommodations.

The nurses were rough with me as they transferred me from the ER bed to the one in my room. I was crying and yelling, frustrated by the fact that they kept bumping and touching me. I was given stern looks and angry lectures about how I wasn’t the only one on the floor, and that I needed to be quiet. They told me to stop crying because I was disturbing the other patients. (I would really like to see if they would be able to stop their tears while feeling like they are on fire.) Nobody knew what RSD/CRPS was so they didn’t understand what I was going through. One of the nurses had heard of it because her old roommate was someone I know who also has RSD, but she was probably the least sympathetic. They all only saw a screaming girl and became frustrated when I couldn’t control my pain.

Before they left, the team told me I needed to use the restroom since I hadn’t in hours. They said I should get out of bed and go. Obviously, this wasn’t an option since the only part of my body that I was able to use/move was my head. When I told them that I couldn’t do what they had requested, they looked even more annoyed and went to find a bedpan. When my, uh, waste overflowed the tiny container they gave me, the nurses became even more agitated with me. They had to clean everything up and change the sheets, which they did in a rather gruff manner. I felt like I was being such an inconvenience to them, but I really couldn’t help it. What, did they expect to have a quiet day on the job? Not when I’m around.

I was eventually drugged up heavily so I was finally able to get some rest. Of course, “rest” isn’t really something that happens in hospitals, especially with people coming in all the time to draw blood, take vitals, and shut off the beeping machines, but I at least had a few moments of shut-eye.

The next morning, I woke up to bright lights and a man poking my upper arm. I was not a happy camper, but I knew that he had to do it. My nurse tried to get me to eat, but I declined. I asked if there was a plan in place for the day: were any doctors coming to see me? Would I get some help? She didn’t know. It was a constant waiting game, which is not ideal when you’re dealing with extreme pain. I remember laying in bed, moaning, unable to even watch TV or have a solid conversation. I wanted to jump out of my skin, leaving the pain behind.

The entire day was spent in bed without any visits from doctors. A few friends and family members stopped by, and I’m sure they loved being greeted by my tangled hair and foul odor. I couldn’t focus on talking to anyone because the pain was too bad. A volunteer came in and asked if I’d like to have a new painting on the wall, so I accepted her offer. I was soon given a picture of an old diner, which I stared at for hours.

My mind was racing as I thought about all the what-ifs of the situation. What if I couldn’t go back to school? What if they couldn’t help me at the hospital? What if I stayed like this forever? As I stared at the black-and-white diner scene, I pondered these questions, tears flowing down my cheeks.

Stay tuned…the story continues.

One Year

It’s been a year since one of the most challenging, nightmarish, and growth-producing parts of my RSD/CRPS journey. This week I’ll be writing about that time, recounting the horrors, victories, and everything in between. Warning: The following posts contain real, detailed accounts of my life. Some things won’t be pretty and sugar-coated. After all, life isn’t all rainbows and butterflies. Read if you wish.

One year ago today, I was enjoying my summer and becoming increasingly excited about going back to school. I was invited to a barbeque at my friend’s house but ended up not going. Instead, I found myself reliving my worst nightmare: slipping on my crutches.

August 2, 2013, I found out who my college roommate would be for the year. We started to text each other, discussing dorm themes, likes/dislikes, and everything else we needed to know.

The next day, I decided to take a trip down to my basement to gather some items to pack. Sure, we still had a month until we were going to move in, but the excitement was getting to me and I just couldn’t wait! I was home alone that day so I didn’t want to go downstairs until someone else was there, just in case. That was one of the best decisions of my life. When my sister came home, I quickly went down and piled a bunch of miscellaneous items into a bag.

When I came upstairs, hands full of school supplies, I was thinking about how this would be a new year. I was feeling so encouraged by the fact that I was healthy enough to go back to school. I put down my bags for a second and started to walk away to grab something else. I didn’t expect the floor to be so slippery, and before I knew it, my crutches were sliding from beneath my arms. They crashed to the floor as I fell on my knees. I tried to use my hands to break the fall, but my attempts failed. I was soon laying on the cold, dirty floor, screaming for help.

My sister ran into the kitchen when she realized what had happened. My parents were at a wedding so we didn’t want to disturb them. In that moment, I had to assess the situation. How bad was my pain? Was this an emergency? Was it worth bothering my mom? My screams, which I’m sure were heard across the neighborhood, answered all of those questions. I begged for relief, even telling my sister to drug me up with medication if she had to, just so I could be knocked out. I was horrified, angry, and confused.

I try to avoid doctors and hospitals at all costs, so I made my sister call my mom before dialing 911. My mom rushed home from the wedding, then insisted that we call an ambulance. I was devastated but desperate for help. My sister called 911 as I remained sobbing on the floor, unable to move.

Within minutes, my kitchen was filled with emergency responders. None of them had any idea what RSD/CRPS was, which certainly didn’t help the already difficult situation. They asked me questions but I couldn’t answer, so my mom did the talking. I was soon lifted onto a stretcher and covered with blankets, my mom standing by to make sure nothing touched my legs or arms. My “pillow pile” was brought downstairs to prop my feet up and prevent them from touching the bed, and a team of medics brought me across the street and into the ambulance.

My mom was not allowed in the ambulance, so she had to drive behind us. I was locked into the back of the truck with a young Paramedic sitting next to me. He kept trying to ask me what was wrong. “I’m in PAIN!” I screamed. I told him that I had a chronic pain disorder called RSD/CRPS. I could hear the confusion in his voice as he relayed this to his partner. “She has some problem called RSD,” he said into his walkie talkie. Nobody knew what this disorder was. He strapped a blood pressure cuff onto my tender arm and tried to take my vitals. The pain was worsening with each squeeze. In an effort to shut me up, the medic grabbed a syringe.

“I’m going to give you some medicine that will make you fall asleep,” he said firmly. “No, I can’t have shots!” I fearfully replied. I begged him to wait until he talked to my mom before administering the drugs, afraid that the injection would cause my RSD to spread. I wanted him to try oral medication before resorting to this. “You’re over 18 so I don’t need your parents’ consent for anything. I’m going to give it to you,” he stated. I was in a vulnerable position because I couldn’t move or do much to stop him, so I soon felt the poke of the needle going into my arm.

Contrary to what he said, the medication did not take effect until long after I was in the ER. I felt every bump on the road, every turn of the truck, and every squeeze of the blood pressure cuff. My arms were becoming increasingly sensitive and painful as my legs remained burning and motionless. When we finally reached the hospital, I was taken out of the ambulance and into a room. I was given more medication and soon fell asleep.

When I woke up, I was in more pain than before. My arms were completely stiff, swollen, and on fire, showing the classic “claw” look of RSD. My legs were worse and I was still crying. The flashbacks from when I fell and my RSD went full-body a few years beforehand were unstoppable. I kept hoping to wake up from this horrible dream, but the pain reminded me that this was very real. My mom was talking to me, my aunt had come to visit, and my dad was in the waiting area. We waited for what felt like hours and soon I was taken to a room, where I quickly discovered that this nightmare was just beginning.

Check back tomorrow for part 2…The Worst Hospital Ever.

Taking a Moment for Meso

I was recently contacted by a man named Cameron Von St. James. He walked alongside his wife, Heather, as she battled (and overcame!) mesothelioma, and he asked if I would write a post to spread awareness. Always eager to help others learn about lesser-known illnesses, I happily agreed.

Mesothelioma. If you’re like most people, you’ve probably only heard this word in lawyer ads on TV, or perhaps in a high school science class during a discussion about asbestos. But how many of us have taken a moment to research this disease? Chances are, unless you personally know someone who has been affected by mesothelioma, you don’t know much about this nightmare that so many people face each day.

So…what is mesothelioma? Well, it is a nasty cancer that wreaks havoc on the membrane lining of internal organs, most commonly the lungs. It is often caused by exposure to asbestos, a dangerous type of mineral often found in old buildings. While not illegal in the US, asbestos use has decreased as more knowledge has been discovered about its harmful effects. However, many people are still exposed to asbestos daily.

How is mesothelioma diagnosed? It often takes years, even decades, before symptoms of mesothelioma appear. Even when symptoms are present, it is difficult to achieve a correct diagnosis. There are many tests, such as biopsies and scans, that can be used to diagnose this disease.

What does treatment for mesothelioma look like? Since mesothelioma is a rare disease, there hasn’t been much research done on treatments. The most common treatments are chemotherapy, radiation, and surgery.

Who is impacted by mesothelioma? Each year, about 3,000 people are given this diagnosis. They are often told that they have less than a year to live. It’s hard to imagine being given such devastating news.

How can you protect yourself? Since asbestos is a major cause of this disease, it is important to avoid exposure to it. Many buildings these days are asbestos-free, but if you come in contact with this substance, use great caution. Even second-hand asbestos from clothing or other surfaces can be dangerous.

Cameron’s wife, Heather, is living a full, happy life after overcoming mesothelioma. She was diagnosed shortly after giving birth to their daughter and was only given 15 months to live, but here she is, 8 years later, defeating the odds. Stories like this never fail to amaze me. Heather was given a grim prognosis but she chose to fight. She decided to go forward with whatever treatments necessary, including having surgery to remove a lung. She knew that she still had a life to live and a daughter to raise, and she wasn’t about to let mesothelioma stop her. I wonder how many of us would be so bold, so hopeful, so brave?

The next time an ad for mesothelioma pops up on your TV, I hope you remember the Von St. James family. I hope you take a moment to think about how there are real people who are impacted by this disease, not just made up stories.

For more information about this disease, please visit www.mesothelioma.com . This website has a lot of great material about the impact of mesothelioma. I think it is incredibly important to educate ourselves about different illnesses, especially when they are rare…you never know when your knowledge could help save a life.