Remember when words like LP, LFTs, CT scans, MRIs, EMG, NCS, and CBC to name a few were just these two or three letter abbreviations for some scary, irrelevant, and meaningless medical word? When did life suddenly come to a screeching halt and force me to reevaluate every aspect of my life? My education? My career? My hobbies? My sports? When did I become accustomed to having pain everyday, that gets so severe every couple of months that it leaves me begging the doctors to just cut off my legs? The sad part is, I'm not even kidding when I say that. Growing up, I always had aches and pains in my legs that we blamed on soccer and my rough and tumble lifestyle. Those pains... Man, I would do anything to have just those pains back. Well, I didn't sign up for the chronic pain lifestyle. The chronic pain lifestyle attacked me.
Scars. Everyone seems to be afraid of them. But why? They are like little pictures that tell a story and no two scars are alike. Scars from IVs line my hands, wrists, and arms, but they are a symbols of all the ketamine infusions, blood tests, contrast for CT scans, and plain old IVs for hydration and medication administration in the ER. My back is littered with scars from hundreds of trigger point injections, about 20 epidurals, 1 tunneled epidural catheter, and a surgical scar. My fingers and hands have multiple scars, 2 from surgeries and 1 from accidentally slicing my finger open on the Operation game when I was 4. I have a surgical scar on my chest. I have a big surgical scar on my left ankle and a little surgical scar on my right foot. I also have scars on my legs from Foley catheters breaking down my skin and one from cutting my knee on a glass door. And even though no one can really see them, I have one scar behind each of my ears from my cochlear implant surgeries. I'm proud of my scars because they tell a story of all that I've endured and overcome. Wear your battle wounds proudly!
The key to staying active with chronic pain and avoiding further injury is low impact activity. I am guilty of engaging in high impact activity, as my sports are skiing and Taekwondo. My doctors absolutely HATE that I ski and do Taekwondo because of the heighten risk for injury. My joints are more susceptible to injury because of my joint hypermobility syndrome. A simple ankle sprain can have serious consequences, like surgery or a weeklong hospital stay. No fun. At the same time, I know that there are pain management doctors that are begging their patients to even move. I guess I just need to find the happy medium when the time comes.
Cycling- Cycling is great exercise to get the heart pumping and the blood moving (which is essential for the management of CRPS). It is also very low impact which doctors love and it can be done indoors or out!
Walking- No explanation needed. You can easily control the intensity of your workout and it can be done indoors and outdoors. Nothing better on a warm summer's evening!
Swimming- Swimming is great cardio and awesome exercise because you feel weightless. Water walking is a perfect place to start if you can't fully bear weight. If skin hypersensitivity is an issue, water is a potent desensitizer; perfect for getting that desensitization in!
Yoga- Yoga is an awesome way to relax and center yourself while stretching your muscles, improving balance, and building up strength. It also helps to improve the range of motion in your joints which is great if you are stiff.
PT/OT- This is usually the starting point for people with chronic pain. With the help of a specialist, we can safely find out what kinds of activities we are capable of doing and how to stay safe while doing them.
Tai Chi- Tai Chi is a slow, relaxed martial art that focuses on breathing and gentle movements.
Strength Training- Building up muscle is a great way to strengthen your entire body and stabilize joints, which helps reduce the chances of a severe injury.
This is a letter I wrote to my newly diagnosed self last November. I thought I would share it with you today.
November 14, 2014
2 Years Post-CRPS Diagnosis
Dear Meg of November 14, 2012,
Little do you know what lies ahead of you. If you had any idea, you would not be taking the news of your diagnosis so well. Right now, you don’t fully understand the impact that CRPS will have on your life. This is a very good thing. Doctors will tell you that you will “definitely” recover quickly. They will be wrong. Doctors will tell you that it is all in your head. Again, they will be wrong. Doctors will give up and come undone on you. You will constantly be in fear of doctors giving up on you. Your body will start to fail you. It will be hard to walk, pain will soar, and it will wear on you physically, emotionally, and spiritually.
In the months that lie ahead, you will endure a number of procedures, IV sticks, injections, blood tests, infusions, medications, side effects, ER visits, doctor’s appointments, more diagnoses, and many weeks in the hospital. If there were frequent flyer miles for the OR and procedure center, you will amass a ton. You will fight for life when a procedure goes terribly wrong. You will miss more school than you can possibly comprehend. The nurses will become mom equivalents.
But it is not all terrible. You will learn what you still want to do with your life and you will come to the realization that life is way too short to life to live with regrets. You will learn that true strength comes from knowing your limitations, and busting through them. Hold on to hope and remember that all pain has to end someday. Your friends will be beside you every step of the way. They will drop whatever they are doing to visit you or shoot you a text to cheer you up. Many sleepovers will end up being the “Ultimate Children’s Hospital of Pittsburgh Sleepovers”.
You will fight like a champion. Win or lose, champions stay positive and dream big.
Keep your chin up and charge the mountain.
Love, Meg from November 14, 2014
Before I was diagnosed with CRPS in November 2012, I was a spoiled, teenage girl whose life revolved around basketball. I played basketball nonstop. My parents invested thousands of dollars into private coaching, camps, travel teams, and gas expenses. Hours and hours were spent in the car traveling to practices, tournaments, and sitting in hot, cramped gyms waiting to hit the court. To do what I did everyday then, now, is simply unimaginable.
October 17th, 2012 was the last day I could truly, 100% concentrate on schoolwork. Today, my mind is always fighting the pain to get my work done and it is a constant battle to be productive when my symptoms are at their best, but not to wait too long or they will worsen again and therefore, whatever needed to be done, doesn't get done. For instance, I have to walk a half mile from my car to my college classes. Class starts at 9:00am and if you are late, 5 points is deducted from your final grade. I get up at 6:15 to get dressed, do my thing, eat, take medications, drive to campus while inevitably sitting in traffic, park the car, and walk to class. I usually arrive at class by 8:30 to allow my body to get itself together before 9:00 class. Even with accommodations from the disabilities office, I am still challenged to get through each and every one of my classes. This semester, I got lucky. I have a really good English professor who is very understanding and flexible. Then, I have the professor that docked me 5 points because it took me 35 minutes to walk from the car to classes in the middle of a flare. You win some and lose some. I graduated high school with a 4.4 GPA, but college has been a complete struggle. I just want to graduate with a degree at this point. Unfortunately, I know that my grades would be better if I could concentrate on the task at hand versus my pain, but it's my reality. And so it goes.
I have the added challenge of working my life around doctors appointments. More than once, I've considered just not scheduling anymore doctors appointments, but my "spoonie" friends have encouraged me to keep the faith and trust my team.
Nothing makes me more angry when someone tells me that I am so wrapped up in my health issues that I don't live life, because that is hardly true. The reality is, I do more than most people with chronic pain and it takes every ounce of my being to do what I do.
I can NEVER show how I'm feeling because the minute I let my guard down, I am told see a psychologist or a psychiatrist. If I didn't have CRPS and I had a visible condition that the medical community didn't dispute its existence, I can GUARANTEE you that I would not be treated the same way.
Before my CRPS, I could be super spontaneous and fun, but now, I have to be careful and plan out every activity to ensure that I won't get too much payback. Nevertheless, I still overdo it time and time again. Some things just never change.
Even though life as I knew it changed, I have learned that I'm a good writer, I've taken up blogging. I'm a ski patroller. I volunteer at the Children's Hospital where I am a patient once a week. I take Taekwondo classes 5 nights a week and I assist in classes. I have also had the opportunity to meet several amazing people that I would not have met if I didn't have CRPS. All though I usually don't admit it, I know that I have inspired many with my fighting spirit.
Now that I've been fighting and beating CRPS and its other unpleasant co-conditions, I've learned a thing or two about life. First of all, life's not fair. I don't know why CRPS struck me and not some criminal, but I've learned not to question it. Second of all, I'm lucky. I have a great team of doctors who work together to give me the best quality of life possible. Lastly, I'm lucky to have loving and supportive family and friends because not many people with chronic illnesses can say that.
When you live with chronic illness, you have an extra set of unknowns in your life. You can't reasonably guess how you'll feel. You don't know what symptoms will pop up. You never know when a crazy new symptom is going to make its way into your life. At that point, you have to decide if it's anything significant and 99% of the time, I've found that it usually isn't.
One thing in particular bugs me though. It's funny how the success of a ketamine infusion and good epidural catheter placement will dictate how my life plays out. That's a tough pill to swallow. Sometimes the epidural catheter placement isn't solid and I don't get a good block. Therefore, I am ultimately left with higher levels of pain. These infusions dictate whether I'm bed bound or doing typical teenage things. At 18 years old, this shouldn't have to be a concern. I should be able to go to school, hang out with friends, ski, do Taekwondo, and all of the other outdoorsy things I love to do. I spent my 11th, 13th, 16th, and 18th Birthdays at Children's Hospital getting treatments or going to appointments. For my 18th birthday, my doctor gave to me 29 trigger point injections in my back and neck. No one deserves a life of uncertainty and no one deserves a life full of chronic pain and illness. Until everyone is freed of hospital bracelets, we must continue to fight like a champion!
"Keep your chin up and charge the mountain"
Rant Alert: Is it selfish that sometimes I wish that there was some visible, tangible reason for our pain? Don't get me wrong. I have just about every RSD/CRPS symptom in the book... Skin color, temperature, texture changes. And the list goes on and on. Abnormal EMG. Abnormal Q-SART (which "confirmed" my CRPS diagnosis). Everyday, I look at my body changing colors, changing temperatures, and I feel almost...insane. Like I'm losing it. But at the same time, I'm living life as best I can. College classes, skiing, Taekwondo, Netflix and hanging out with friends and family consume my time. I'm not depressed or anxious and I'm on Cymbalta for the nerve pain anyway. I see a pain psychologist when I feel it's necessary and she is so happy and impressed with how I am doing. With so much going "right", then why do I feel like I'm crazy and that my pain somehow isn't real? I'm just confused.
For many with CRPS, the light touch of a sheet can be excruciating. So what happens when your Aunt Jo, whom you haven't seen for years, wraps you in a giant bear hug for five minutes? Probably a giant flare, right?
What if each spoonie developed a sign like from American Sign Language to show love without physical contact? That way you can avoid a flare and show family and friends that you love and care about them.
Just a random thought. What do you think? Below is a picture of my sign for my family! It actually means "I love you" in ASL.
Keep your chin up and charge the mountain!
The best way to explain chronic illness is to imagine. Christine Miserandino's "The Spoon Theory" provides a great explanation of the challenges of living with chronic illness. The Spoon Theory is the property of Christine Miserandino. Please enjoy!
The Spoon Theory
by Christine Miserandino www.butyoudontlooksick.com
My best friend and I were in the diner, talking. As usual, it was very late and we were eating French fries with gravy. Like normal girls our age, we spent a lot of time in the diner while in college, and most of the time we spent talking about boys, music or trivial things, that seemed very important at the time. We never got serious about anything in particular and spent most of our time laughing.
As I went to take some of my medicine with a snack as I usually did, she watched me with an awkward kind of stare, instead of continuing the conversation. She then asked me out of the blue what it felt like to have Lupus and be sick. I was shocked not only because she asked the random question, but also because I assumed she knew all there was to know about Lupus. She came to doctors with me, she saw me walk with a cane, and throw up in the bathroom. She had seen me cry in pain, what else was there to know?
I started to ramble on about pills, and aches and pains, but she kept pursuing, and didn’t seem satisfied with my answers. I was a little surprised as being my roommate in college and friend for years; I thought she already knew the medical definition of Lupus. Then she looked at me with a face every sick person knows well, the face of pure curiosity about something no one healthy can truly understand. She asked what it felt like, not physically, but what it felt like to be me, to be sick.
As I tried to gain my composure, I glanced around the table for help or guidance, or at least stall for time to think. I was trying to find the right words. How do I answer a question I never was able to answer for myself? How do I explain every detail of every day being effected, and give the emotions a sick person goes through with clarity. I could have given up, cracked a joke like I usually do, and changed the subject, but I remember thinking if I don’t try to explain this, how could I ever expect her to understand. If I can’t explain this to my best friend, how could I explain my world to anyone else? I had to at least try.
At that moment, the spoon theory was born. I quickly grabbed every spoon on the table; hell I grabbed spoons off of the other tables. I looked at her in the eyes and said “Here you go, you have Lupus”. She looked at me slightly confused, as anyone would when they are being handed a bouquet of spoons. The cold metal spoons clanked in my hands, as I grouped them together and shoved them into her hands.
I explained that the difference in being sick and being healthy is having to make choices or to consciously think about things when the rest of the world doesn’t have to. The healthy have the luxury of a life without choices, a gift most people take for granted.
Most people start the day with unlimited amount of possibilities, and energy to do whatever they desire, especially young people. For the most part, they do not need to worry about the effects of their actions. So for my explanation, I used spoons to convey this point. I wanted something for her to actually hold, for me to then take away, since most people who get sick feel a “loss” of a life they once knew. If I was in control of taking away the spoons, then she would know what it feels like to have someone or something else, in this case Lupus, being in control.
She grabbed the spoons with excitement. She didn’t understand what I was doing, but she is always up for a good time, so I guess she thought I was cracking a joke of some kind like I usually do when talking about touchy topics. Little did she know how serious I would become?
I asked her to count her spoons. She asked why, and I explained that when you are healthy you expect to have a never-ending supply of “spoons”. But when you have to now plan your day, you need to know exactly how many “spoons” you are starting with. It doesn’t guarantee that you might not lose some along the way, but at least it helps to know where you are starting. She counted out 12 spoons. She laughed and said she wanted more. I said no, and I knew right away that this little game would work, when she looked disappointed, and we hadn’t even started yet. I’ve wanted more “spoons” for years and haven’t found a way yet to get more, why should she? I also told her to always be conscious of how many she had, and not to drop them because she can never forget she has Lupus.
I asked her to list off the tasks of her day, including the most simple. As, she rattled off daily chores, or just fun things to do; I explained how each one would cost her a spoon. When she jumped right into getting ready for work as her first task of the morning, I cut her off and took away a spoon. I practically jumped down her throat. I said ” No! You don’t just get up. You have to crack open your eyes, and then realize you are late. You didn’t sleep well the night before. You have to crawl out of bed, and then you have to make your self something to eat before you can do anything else, because if you don’t, you can’t take your medicine, and if you don’t take your medicine you might as well give up all your spoons for today and tomorrow too.” I quickly took away a spoon and she realized she hasn’t even gotten dressed yet. Showering cost her spoon, just for washing her hair and shaving her legs. Reaching high and low that early in the morning could actually cost more than one spoon, but I figured I would give her a break; I didn’t want to scare her right away. Getting dressed was worth another spoon. I stopped her and broke down every task to show her how every little detail needs to be thought about. You cannot simply just throw clothes on when you are sick. I explained that I have to see what clothes I can physically put on, if my hands hurt that day buttons are out of the question. If I have bruises that day, I need to wear long sleeves, and if I have a fever I need a sweater to stay warm and so on. If my hair is falling out I need to spend more time to look presentable, and then you need to factor in another 5 minutes for feeling badly that it took you 2 hours to do all this.
I think she was starting to understand when she theoretically didn’t even get to work, and she was left with 6 spoons. I then explained to her that she needed to choose the rest of her day wisely, since when your “spoons” are gone, they are gone. Sometimes you can borrow against tomorrow’s “spoons”, but just think how hard tomorrow will be with less “spoons”. I also needed to explain that a person who is sick always lives with the looming thought that tomorrow may be the day that a cold comes, or an infection, or any number of things that could be very dangerous. So you do not want to run low on “spoons”, because you never know when you truly will need them. I didn’t want to depress her, but I needed to be realistic, and unfortunately being prepared for the worst is part of a real day for me.
We went through the rest of the day, and she slowly learned that skipping lunch would cost her a spoon, as well as standing on a train, or even typing at her computer too long. She was forced to make choices and think about things differently. Hypothetically, she had to choose not to run errands, so that she could eat dinner that night.
When we got to the end of her pretend day, she said she was hungry. I summarized that she had to eat dinner but she only had one spoon left. If she cooked, she wouldn’t have enough energy to clean the pots. If she went out for dinner, she might be too tired to drive home safely. Then I also explained, that I didn’t even bother to add into this game, that she was so nauseous, that cooking was probably out of the question anyway. So she decided to make soup, it was easy. I then said it is only 7pm, you have the rest of the night but maybe end up with one spoon, so you can do something fun, or clean your apartment, or do chores, but you can’t do it all.
I rarely see her emotional, so when I saw her upset I knew maybe I was getting through to her. I didn’t want my friend to be upset, but at the same time I was happy to think finally maybe someone understood me a little bit. She had tears in her eyes and asked quietly “Christine, How do you do it? Do you really do this everyday?” I explained that some days were worse then others; some days I have more spoons then most. But I can never make it go away and I can’t forget about it, I always have to think about it. I handed her a spoon I had been holding in reserve. I said simply, “I have learned to live life with an extra spoon in my pocket, in reserve. You need to always be prepared.”
Its hard, the hardest thing I ever had to learn is to slow down, and not do everything. I fight this to this day. I hate feeling left out, having to choose to stay home, or to not get things done that I want to. I wanted her to feel that frustration. I wanted her to understand, that everything everyone else does comes so easy, but for me it is one hundred little jobs in one. I need to think about the weather, my temperature that day, and the whole day’s plans before I can attack any one given thing. When other people can simply do things, I have to attack it and make a plan like I am strategizing a war. It is in that lifestyle, the difference between being sick and healthy. It is the beautiful ability to not think and just do. I miss that freedom. I miss never having to count “spoons”.
After we were emotional and talked about this for a little while longer, I sensed she was sad. Maybe she finally understood. Maybe she realized that she never could truly and honestly say she understands. But at least now she might not complain so much when I can’t go out for dinner some nights, or when I never seem to make it to her house and she always has to drive to mine. I gave her a hug when we walked out of the diner. I had the one spoon in my hand and I said “Don’t worry. I see this as a blessing. I have been forced to think about everything I do. Do you know how many spoons people waste everyday? I don’t have room for wasted time, or wasted “spoons” and I chose to spend this time with you.”
Ever since this night, I have used the spoon theory to explain my life to many people. In fact, my family and friends refer to spoons all the time. It has been a code word for what I can and cannot do. Once people understand the spoon theory they seem to understand me better, but I also think they live their life a little differently too. I think it isn’t just good for understanding Lupus, but anyone dealing with any disability or illness. Hopefully, they don’t take so much for granted or their life in general. I give a piece of myself, in every sense of the word when I do anything. It has become an inside joke. I have become famous for saying to people jokingly that they should feel special when I spend time with them, because they have one of my “spoons”.
© Christine Miserandino
I really like "The Spoon Theory" because it takes the abstract concept of energy and pain and makes it visible in a unique way. It is a great way to explain your limitations to other people, especially when you have to cancel plans at the very last minute for the millionth time. Some days, I have seemingly endless energy and other days, I stay in bed all day, leaving only to use the restroom or get food. This unpredictable lifestyle is HARD. When you wake up in the morning (if you've even slept), you never know how many spoons you'll have, which making planning life challenging and frustrating. As frustrating as it is for everyone else, it is even more upsetting to "spoonies" who suddenly lose all sense of control in their lives.
Keep your chin up and charge the mountain!
When my CRPS goes into a mega-flare, my dystonia usually follows suit and while sometimes it is just my right leg that is affected, since my ankle surgery in November 2014, it has affected my left ankle too.
I went to the university parking office a while ago and requested that I get a pass for the most accessible parking lot, as I am currently in the least accessible parking lot on campus. They said no and are forcing me to get a handicap placard for accessible parking on days I can't walk. I wouldn't be using a handicap spot, I just need guaranteed parking in that garage.
I can't get a handicap placard cause I feel like that would be me giving up and don't want to give up my sense of independence. It's a pride thing. I am proud that I am fiercely independent, sometimes to a fault. No one wants to be seen as some weakling who always requires assistance. Especially not me.
One day, I was in a flare and the garage was closed to people without parking passes. I needed my wheelchair to get around, so when I asked to park in the garage they refused. It was the only accessible place I could have parked that day, so therefore, I couldn't attend class because I couldn't park my car in an accessible location. How sad is that that I pay $27,000 a year and I am being denied accessible parking privileges! Disgusting.
I bought this concern up to my pain psychologist and she told me to get the handicap placard, give the parking office what they want, get the parking pass, and then burn the handicap placard because it doesn't and never will define me. I love that idea. It's sad that I have to work the system in such a manner, but I have to advocate for myself and do what's best for me.
So next week, I am getting my application for a handicap placard from my PCP, marching into that parking office, and getting the parking pass I rightfully deserve, because nothing this petty should get in the way of my academic success.
Keep your chin up and charge the mountain!
I am a 20 year old junior at the college of my dreams. I am studying Emergency Medicine and Communication Rhetoric and minoring in the Administration of Justice and National Preparedness and Emergency Management certificate. At some point, I want to go and get my paramedic certification when my health allows. I have several chronic illnesses and this blog and website serves as a place for me to share my journey fighting CRPS and my other conditions. I hope that this blog can also serve as an outlet for raising awareness for rare diseases. Thanks for reading and I hope you enjoy! Feel free to comment; I'd love to know what you think!