It's the classical chronic illness dilemma. Go out, enjoy the day, and pay for it with a huge flare or stay in, play it safe, and pay for it by missing out on the fun and the chance to make memories. I rarely choose the latter option. Life's too short for play it safe all the time. Going into the weekend, I knew I was going to make a choice. I had already been in a moderate pain flare for about a month after a series of unfortunate events and I knew that if I pushed myself, I would my body would probably rebel and I would pay for it. How much I would pay for it remained to be seen.
There was no question in my mind that I was participating in the Spar-A-Thon that we had at my taekwondo school this weekend. I told myself weeks ago that as long as I could safely walk and do my moves, I was going. Come Saturday morning, I could walk. Check. I was physically able to do my taekwondo moves. Check there too. Well, that's settled. I was going.
The concept behind the Spar-A-Thon was that each person would put on their sparring gear and spar as many 1 minute rounds as they could in 1 hour. We were to get pledges for a certain amount of money for each round sparred and the money raised was to go to help the families at Children's Hospital. So that's what I did. I sparred a total of 10 rounds against some pretty awesome competition. Everyone knows that if there was room on the mat, I probably would have sparred the whole hour (or as long as I was physically capable!). The best part was probably sparring my instructor the last round I sparred. He's awesome at sparring and he always challenges me. And I raised $300 for Children's Hospital. Not bad for an hour of sparring!
I walked out of there tired, but very happy! Drove home with no problems. Fixed myself a sandwich for lunch before getting a shower. After that shower, the rebellion began with my feet turning in. Of course, my medication didn't stop it, which was no surprise. I laid in bed for a while to watch some Netflix and rest. By that evening, one foot was turned in and the other was starting to progress. Well, that's that, I told myself.
The moral of the story? I'm stubborn and some things I'll just never learn. I'm paying what I consider to be the ultimate price. I essentially brought myself a ticket for a weeklong stay on the 9th floor of Children's Hospital and all the baggage that is associated with that. Would I do it again? Absolutely! This is going to sound horrible, but I don't regret my decision at all. It was informed decision; a calculated risk. I was going to end up in a massive flare at some point anyway. The irony? I'll be spending quality time at the hospital where the money from the Spar-A-Thon was going.
Like I said, there are some things I'll just never learn.
Beep. Beep. Beeeeeeep. During my hospitalizations, I am completely dependent on machines. One "machine" tracks my blood pressure, heart rate and rhythm, respiratory rate and the oxygen content of my blood. If any one of the those numbers gets outside of the set range during the course of my treatments, the monitor will blare incessantly. This is a frequent occurrence, but this is the one I don't mind as much, because this the machine that will alert the nurses that there is a problem if my heart starts beating too slow, my blood pressure gets too low, or I stop breathing.
Then there is my tunneled epidural catheter infusion. This takes two pumps to run, because I often need two pumps to break my severe contractures. This one usually only alarms when the medication cassette is empty. It can beep for hours, so this one gets on my nerves easily.
The fourth machine is the pump that runs my fluids through my PICC line. Whenever the line kinks, my PICC manages to get blocked or stop working completely, or I run out of fluids, the pump screams. This is the pump that goes off the most often. It always seems to be the most temperamental pump.
Last but not least, the fifth machine is my ketamine pump that runs my pain relieving medication that my battered body so desperately needs. This pump cries once every 8 hours until the nurses change the cassette.
My dad, being a doctor,has always said that my pumps "sing". I always laughed and played along with him until the pumps blared for what seems like hours in the middle of the night. It wakes me up and probably managing to disturb half of the floor. I have always whined and complained about my cranky pumps, until I realized one thing. These pumps are literally lifesavers. I wouldn't be here without them and they allow me to get back to my life outside the hospital walls. I am forced to fight my hardest inside the four walls of the ER, the operating room, the recovery room, and the room on the regular floor. So when the pumps "sing", that song is my fight song and the pumps are cheering me on!
I have never been a super self-conscious individual. My whole life I have known that I was different. For the most part, I was okay with it. It was my "normal".
When I was diagnosed with CRPS in 2012, many things changed. I lost huge portions of my identity. Not longer was I Meghan the varsity basketball player, the student that never missed school and the most focused student, among things. Inside, the then 16 year old me absolutely struggled. I was forced to go to school late and leave class early when my body decided that it wasn't going to work. This is one of the biggest things that drew much unwanted attention. I was covered in compression garments, splints, and braces. Occasionally, I would need my crutches and my wheelchair. The worst part? One day I would need some of this stuff and the next day, I wouldn't. I struggled with this constant change that seemed to happen every day.
High school was rough from the chronic illness standpoint. When I started college, I was determined to be active, get good grades, get sleep, and have fun with friends. Doing all that is a big joke in for most college kids, but I do all of it and I maintain my full schedule of doctors appointments! College was a blessing in some ways. I have had the chance to find the friends that have stayed my side through thick and thin.
Since then, I've learned that I'm me and that's okay. As long as I'm okay with myself, most other people will be too. I still have to use a bunch of medical equipment to get through life, but it doesn't bother me anymore. All these braces, assistive devices, and machines are just like my cochlear implants. They are essential. A part of my reality. I am finally okay with it.
Dear Doctors and Nurses of Patients with Chronic Illnesses,
Hi. It’s me. You know the patient with the very complex and hard to manage
disease that frustrates you? The patient that you don’t know how to treat? The patient with the symptoms that you have no name for yet? When I am sitting in your examination room, I am probably there because something is bothering me. I may not be the happiest and brightest smiling patient that you see that day. I wish I could smile all of the time. I really do, but sometimes that is extremely hard to do. No, I am not depressed. It’s just a bad day.
You always see me at my very worst. All of our conversations revolve around the latest new symptom, medication, or treatment. I understand that sometimes you have to treat patients as if they are just a number in order to maintain your objectivity and not get too emotionally involved. I can’t imagine how hard it must be to have me as a patient for years and not have your judgment clouded by emotion. However, I want to take a minute to tell you about all the things I don't get to share with you.
You see, when I am lying in that hospital bed in the middle of an admission, I have had to press the pause button on my life. Unfortunately, the rest of the world doesn’t stop to wait for me. But, did you know that before I was admitted recently I received a scholarship acceptance letter? This may sound crazy, with as horrible as I look right now, but in three weeks, I am testing for my black belt in taekwondo. I currently have straight A’s in all my college classes and next month, I am taking a class to get my Wilderness Emergency Medical Technician certification. In December, I am looking forward to spending my winter break skiing and training for next ski racing national championship. I could go on and on about what I have been doing and my upcoming goals.
Hopefully, when you think of it this way, you can see that I am more than just the latest patient to walk into the examination room. While you only hear about the stuff pertaining to my health and it may seem like my illnesses dominate my life, I actually do a lot outside of the hospital. Time doesn’t give us the chance to share some the happenings of my life or latest accomplishment with you, and that’s not why I come to see you, but I promise I am leading the most fulfilling life possible. I am doing my best to live my life to the fullest despite my chronic illnesses.
The Teenage Patient with a Life Outside of the Hospital
This is not a post out of depression, but rather to highlight the harsh truth that many individuals with chronic illnesses face. At the time I am writing this, I am in the midst of one of the most severe full body CRPS and dystonia flares I've ever had. Please pardon any grammatical errors and sentences that may not make sense.
With every day that passes, each one of us is dying. We have one day less to live and it is a reality that no one really thinks about. As a teenager, we are supposed to be in the most carefree time of our lives. You don't consider any of this until you've stared death in the face and realized that your days are numbered. You see, when you live with chronic Illness you become much more acutely aware of the time passing you by. During my pain crises, I lay in bed for days hoping and praying for the pain to go down. I countdown the hours until I can have my next dose of medication in hopes that it will relieve my terrible pain. It never does. You don't see me biting my blanket to keep from screaming at 2 o'clock in the morning, so please don't judge what you don't fully understand. My CRPS ridden body does not care that I have been days within restorative sleep. It doesn't care that I have gone days without holding down food and water. CRPS doesn’t care if I can’t button my own shirt or tie my tennis shoes. It doesn’t care if I want to brush my hair. The CRPS does what it wants and I am forced to comply whether I want to or not. I have learned over the years that it is usually best to listen to what the CRPS is telling my body or it will get mad and make me even sicker.
Comments of "You look great!" and "But you don't look sick!", said with the best of intentions hurt. It is a reminder of how hard I have to work to keep all the pain and sickness I face each day out of the sight of others. Out of sight, out of mind, right? Maybe it's that way for the people that interact with me, but for me? It's a constant battle with no end in sight. My only chance of being liberated of this chronic pain has long been shut down, with no chance of ever coming back. "It could be worse" is little comfort to me. This comment discounts everything that I have gone through and that I make currently going through. Yes, it could absolutely be worse, but at the same time, no one deserves to live like this. All this considered, in this very moment, I'm not living. Life is passing me by one day at a time.
Like a small boat
On the ocean
Sending big waves
Like how a single word
Can make a heart open
I might only have one match
But I can make an explosion
And all those things I didn't say
Wrecking balls inside my brain
I will scream them loud tonight
Can you hear my voice this time?
This is my fight song
Take back my life song
Prove I'm alright song
My power's turned on
Starting right now I'll be strong
I'll play my fight song
And I don't really care if nobody else believes
'Cause I've still got a lot of fight left in me…
-Excerpt from “Fight Song”, by Rachel Platten
Like many people going through challenging circumstances, I think Fight Song speaks volumes to me. When she sings about the small boat in the middle of the ocean and how it surrounded by big waves, I imagine myself running through a burning forest. The faster I run, the faster the blaze catches up to me. The harder I push my body, the more likely it is rebel. But I can’t just stop living. I am much stronger than I think and I can create change if I set my mind to it (“I might only have one match, but I can make an explosion.”) The only way that I can get a cure for myself and all the CRPS survivors is to raise awareness. The RSD/CRPS community has to be loud about how much we want a cure. If we are loud enough, the rest of the world will hear and maybe this knowledge will reach the hands of an experienced researcher looking for a new challenge.
As people living with a chronic illnesses, we have learned that when people ask us how we are doing, they don’t actually mean it. They want us to say good and move on with our day. They don’t actually want to know how we doing. We are expected to keep all of our thoughts, feelings, and frustrations bottled up, until we can’t take it anymore and the psychological baggage manifests itself in a worsening of symptoms. I believe that this is an example of the line, “All the things I didn’t say, wrecking balls inside my brain” that she is referring to in her song. Everyone needs an outlet to turn to whether that be a family member/close friend, psychologist, or even a journal/blog. Anything to let us get rid of unnecessary stress. “I will scream them loud tonight, Can you hear my voice this time?”
Every day that we wake up and face the day, we are declaring our internal fight song. The courage to wake up and face the day and all the pain and challenges it will bring is commendable for people that have limited energy, even though we don’t have much of an option. Every day, I am fighting to regain complete control of my body. I have been told by doctors that I will left with severe pain and other problems for the rest of my life. So basically until a cure is found, I will be forced to find my way in my broken body. I am fighting every day to regain some sense of normalcy (Whatever that is. I have learned over the years that normalcy is overrated.). Still, this doesn’t stop my desire for a life that isn’t filled with issues. “This is my fight song, Take back my life song, Prove I’m alright song…”
“And I don’t really care if nobody else believes, ‘Cause I still got a lot of fight left in me.” One of the challenges with living with an “invisible illness” is that because it is not something that can be easily seen, doctors, nurses, family members, and friends may not believe that you are feeling as bad as you say you are. Therefore, patients are forced to be their own advocates, which is not always an easy thing to do. Many patients have to push very hard to order to receive the specialist care that they so desperately need. Chronic illnesses are just that, chronic. This is not a sprint, rather it is an ultra-marathon. While some will achieve complete remission and never have to worry about their illness returning, the vast majority are not so lucky.
Allodynia- hypersensitivity to light touch from a harmless source like a blanket or a sock
Bloodwork- performed regularly to ensure that medications are not causing organ damage
CT Scans- for evaluating any part of the body, especially useful for the brain and spinal cord
Defeating- CRPS is a constant battle where you lose more often than you win
EMG- a test that measures muscle activity via electric impulses passed through needles in the muscle
Failed Treatments- one of the worst parts of CRPS is that for most people, most treatments are unsuccessful
Gray- one of the many colors that skin can turn in regions affected with CRPS; other colors may include red, purple, blue, and mottled
Heating Pads- useful for soothing sore muscles and increasing circulation to the region
IV Catheters and Pumps- straw-like tubes that deliver medications directly into the bloodstream
Jabs- getting stuck multiple times for bloodwork and IVs
Ketamine Infusions- my most effective treatment
Lumbar Punctures- used to check neurotransmitter function from the cerebrospinal fluid
McGill Pain Scale- CRPS ranks 42/50 on the pain scale; the most painful condition known to man
Neridronate- a drug that is currently being fast tracked by the FDA; If it is deemed safe, it would be the first medication developes specifically for the treatment of CRPS.
Operating Room- a place that I have spent way too much time in the last couple of years
PICC Lines- Peripherally Inserted Central Catheter; basically a big IV that goes straight to your heart
QSART- Quantitative Sudomotor Axon Response Test; a fancy term for a simple sweat test, which can detect conditions of the autonomic nervous system
Remission- everyone’s ultimate goal
Swelling- occurs when the veins leak and a large amount of fluid gets trapped in one area
Tunneled Epidural Catheters- a catheter in the spine that relieves my contractures
Unpredictability- CRPS is extremely unpredictable, one can be fine one minute and in agony the next
Vasomotor Changes- issues concerning vasoconstriction and vasodilation
Warrior Beads- a program that allows you to track your medical journey with beads
X-rays- some x-rays can detect bone thinning from the restricted blood flow to the region
Zero FDA Approved Treatments for CRPS
*These are based on my experiences and such not be taken as medical advice.*
People always ask how my mom how I am doing. Her response? She is wonderful when she is not admitted to Children’s Hospital. It is the truth. When I am not in the hospital, it is easy to forget that I even have chronic illnesses. I use this blog to share an insight into my life, with the occasional vent, poem, or artwork of my own creation. I am not the best author, so if you can get passed the fact that my posts may not always flow like some of the top authors. You may learn something from my blog. But first, I’d like to make one thing as clear as possible. I am always sick. I am always in pain. I am always dealing with some dysfunctional part of my body. Each day is filled with challenges. Let’s take a look at the positives. What I do despite living in a dysfunctional body where more things don’t work rather function normally.
When I am not bedridden, wheelchair bound, and confined to the quarters I know as my hospital room, I am a vibrant, outgoing 19 year old. I attend college where I am studying Emergency Medicine. Academics are always my primary concern, but in my free time, I serve on the executive board of two organizations on campus. Like many young adults my age, my favorite thing to do when relaxing is binge-watching the latest crime show drama on Netflix. I also love to spend time with friends and enjoy their company.
I also like to do crazy physical endeavors. Anything that gets me out in nature, whether that be fishing, hunting, hiking, or biking, is a ton of fun. I help out with taekwondo classes for the younger kids and spend hours training in taekwondo to earn my black belt next month. It blows my mind to think that in just about one month, everything I have worked so hard for will finally be fulfilled when that black belt is tied around my waist. I seriously can’t wait!
On winter weekends and days that I don’t have classes are filled with hours of skiing, helping injured skiers and boarder, and training for the next race. The mountains of the Laurel Highlands are so incredibly beautiful at this time of year with the fall foliage and of course, it is a spectacular winter wonderland in the winter months.
Once a week, I set aside 4 hours to volunteer at the local Children’s Hospital that keeps me going. It is my little way of giving back to the hospital that means so much to me. I love volunteering in the physical therapy and occupational therapy departments, because I love kids improve their physical capabilities. There is something satisfying about ensuring that the gyms and equipment are completely disinfected, so that transplant patient or cancer warrior doesn’t have to worry about contracting an infection while building up their strength.
I keep myself very busy when I’m not in the hospital. Just recently, I got my Emergency Vehicle Operators certification that allows me drive ambulances. Scary thought, huh? Don’t worry, I’m a good driver! In addition, after over a year and half, I was recently awarded the Presidential Champions Platinum Award. For a year and a half, I recorded each and every one of my workouts. The calories from each of those workouts were tracked and when I got to 1 million calories burned, I achieved my goal. I have also done some other pretty awesome things, like help run a Mass Casualty Incident Drill and get my CPR Instructor certification.
I have accomplished all this stuff and so much more, which helps me to keep things in perspective, when I am having a really horrible day or when I am in a pain crisis and nothing helps. I may have RSD/CRPS, but RSD/CRPS will never have me because I never ever give up!
November 3rd, 2015 marks three years since I played in my last basketball game. Here is a short narrative from that day.
If you had one last game to cap your career, what would it look like? For me, it was a game where I led the new group of JV basketball players at a shootout. That morning, my hand was absolutely on fire and nothing was reducing the pain in my swollen digit. As I taped my fingers for the game, I had this gut feeling. "Meghan, you have to give this game everything you have. Show these girls what it means to be a leader... To be a winner, inside and out. Leave it all on the court." When I started that game, the fire burning inside my heart was stronger than the fire burning my finger. The game went well. I hit my shots to scoop up a couple of buckets, grabbed rebounds, blocked shots, recorded assists, and had a few steals. Oh yeah, I also had 4 fouls, so I was definitely causing trouble. :) I remember being almost superhuman in that game. As if I knew that that would be the last time I was ever able to play basketball again. Even more impressive than my performance or statistics was my attitude. I was extremely pumped for this game. I mean, I always get excited for games, but this excitement was on a whole new level.
My pep talk after looked something like this, "Well done kid. You left it out there and now this next generation of girls know what it means it be a high school basketball player; To be an OLSH Lady Charger."
Although my basketball career ended in a way no one wanted to see it end, I left it all on the court and I want to believe that my spirit and determination has changed that team forever.
And just like that, the door closed on my basketball career leaving hundreds of hours training in the gym, team dinners, and the thrill of making an awesome play, behind. Gone but never forgotten.
I'm wearing my orange today! Are you? For all of November, we are wearing orange for RSD/CRPS Awareness. Reflex Sympathetic Dystrophy/Complex Regional Pain Syndrome is a painful, debilitating disorder of the neurological system. It is believed to be caused by damage or malfunction of the central and peripheral nervous systems. Neuropathic pain is only one part of this condition. Other symptoms include swelling, color changes, temperature changes, changes in hair and nail growth and more. In addition, many people with RSD/CRPS develop other chronic conditions as a direct result of the CRPS. All this considered, you can easily see where the term "complex" part comes in. Currently, there are two types of CRPS: Type 1 and Type 2. The major difference between the two types is that in patients with type 1, there is no major injury to nerves and type 2 is characterized by direct injury to a nerve.
There is currently no cure and no FDA approved treatments specifically for the treatment of this condition. In 2014, the FDA declared it an "orphan disease", meaning that because it is so "rare", government grants and funding are not readily available for research. Google Reflex Sympathetic Dystrophy/Complex Regional Pain Syndrome and feel free to ask me any questions via the various social media outlets. Today, and all of NERVEmber, we are working to change that and raise awareness for this dreadful disease!