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.
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.
11 For I know the plans I have for you,” declares the LORD, “plans to prosper you and not to harm you, plans to give you hope and a future.
As I lay in bed for another long and sleepless night, filled with pain, searing headaches, nausea, abdominal cramping, vertigo, weakness, and widespread numbness and tingling. It is often hard for me to see God's plan for me clearly. In time, the reason for my pain and suffering shall be revealed. All pain and suffering has to end someday. Until then, I am staying strong, standing tall, and holding on to hope.
"Keep your chin up and charge the mountain!"
1. Music- Any kind of music is good. I personally love the songs from my motivational tunes blog post, but others prefer more relaxing music. If your are more of a hard rock person, just adjust the volume to a level that is comfortable to you.
2. Good movie- Let me make this very clear. No horror movies while on ketamine! I’ve been there and done that and ended up having a bad hallucination from it. Stick to the movies like Frozen that have awesome soundtracks, so even if you want to close your eyes, you can still listen to the music.
3. Someone to talk to- Okay, this is BIG for the inpatient ketamine infusions. I find that I get super bored after a while and it really helps to have someone to chat with. Like real outside human interaction. Doctors and nurses are great at first, but a friend is ideal. After 5 to 10 days, text messages and phone calls are hardly sufficient.
4. Something to be creative with- Drawing and coloring can be a little challenging, but having some modeling clay can be a fun, stress relieving distraction.
5. Water and Popsicles- I live off of water and popsicles during my infusions. They are the least nauseating things for me to consume. I generally don’t eat while having an infusion.
6. Chapstick- Hospitals are dry and lips get chapped very fast. Applying chapstick twice a day helps prevent the irritation.
7. Dry shampoo- Ladies, this is a big one! You probably won’t want to get up and stand in a shower. However, you probably still want to feel human and not disgusting. Dry shampoo is your best friend. If the hospital has inflatable hair tubs, that’s even better.
8. A comfortable hair style- Gentlemen, I don’t think you have to worry about this too much. Ladies, I have found that a braid or pig tails are the most comfortable hair style to keep your hair neat. There’s nothing wrong with the old fashioned leave the hair down either. Stay away from ponytails if you can. They aren't the most comfortable thing to lay on for hours.
9. Easy access to charging devices- There is nothing worse than not being able to reach your phone, iPod, or laptop charger. An extension cord can help make the cords reach your bed better.
10. Positive attitude- A MUST!
11. Make sure you can reach the call bell- For some reason, it always ends up in that one spot where you can’t get it.
12. Someone to stay with you and assist you to the restroom, get things for you etc.- You will probably be pretty unsteady on your feet, so having someone to help you around is a good idea and you don’t have to wait for the nurse which is always a plus. They have a million other things to do and patients to care for.
13. Light PT exercises to stay moving and prevent joints from stiffing up- Laying in bed all day is no fun, but some light in bed exercises can help alleviate stiffness
14. A soft blanket- Hospital blankets are itchy and smell funky. Bring your own blanket for an extra homey touch.
15. A good, supportive pillow- Hospital pillows are super uncomfortable and flat. Your pillow from home will be much more supportive. You may even want to consider a neck pillow for when you want to sit up.
16. Any other medical necessities you need to bring from home like braces, splints, TENS Units etc.
17. Deodorant. Just bring it. No questions asked.
18. Any other personal care products
19. Ask for the preventative anti-nausea and anti-psychotics before they get too bad!- When it gets bad, it can get very bad. Just ask for them. Don’t try and tough it out, because you’ll usually lose. (At least I have!)
20. Don't be afraid to bring a comfort object like a teddy bear. I am 18 years old and I still bring my stuffed dog that was a gift from a friend, with me to the hospital.
For the people that receive outpatient Ketamine infusions, most of these tips won't apply, but for those of us that do 5-10 day inpatient infusions, these tips can be a lifesaver. Take it from me, a 14 weeklong infusion veteran. I've made these mistakes. If you're like me and you only get an infusion when a miserable flare pops up, then it helps to keep a hospital bag with this stuff packed. It makes things a lot faster and less painful (physically and emotionally) when that time comes. With the help of these tips and a little bit of luck, you can make ketamine infusions go a little bit smoother.
Living life with chronic illnesses is scary and unpredictable. You never know what the day has in store for you and I know that I am not guaranteed to see tomorrow. I try to live in the present and take it one step, one day at a time. I often get knocked to my knees but I continue to push forward. As long as I move forward, I am winning and I am a champion!
For far too many worldwide, this is the unfortunate reality and these are the questions that go through any chronically ill person's head at any given time on any given day.
Will you be able to walk? Do you need your crutches or even your wheelchair? Are your joints in place or do you need to wear braces? How well did you sleep last night? Can you safely do what you hoped to do? If not, the day is either wasted or someone will have to help you. Are your medications working? Are they making you extra tired? Are you having any side effects? If you do, you won't be able to drive. Are your feet swollen? Do you shoes fit or do you need to wear your walking boots instead?
Are your fingers stiff and swollen? Forget trying to type on a computer. That will dictate how you get dressed and whether that jacket will be zipped up. T-shirt versus a button down shirt. Jeans versus yoga pants or leggings. Sneakers or slip on shoes? Do you have a headache? You'll have to get dressed in the dark because the light hurts your eyes and listening to music is out of the question. Is your brain foggy? Well, you better hope you don't have an exam or homework. Is your hand cramped? Don't bother trying to write. Is your back spasming? That will determine whether you walk, stand, sit, or lay down in bed and what you are capable of doing today. Are your arms and hands numb? Good luck because you really can't do anything until it subsides.
Can you imagine? Most people can't. The best way to help a chronically ill individual is to be there for them. Be that listening ear when they need to vent. Be that person with a free hand to squeeze when the pain becomes unbearable. Be that person they can count on for a gentle hug. Send them a card or a message of support. It's the little things from our cheering sections that encourage us to fight on. "Keep your chin up and charge the mountain!"
If I Had Just 24 Hours Without Pain...
An Original Poem by Meghan Bayer
What would I do if I was pain free for 24 hours?
I would hug the people I love as tightly as I possibly could.
I would run for miles like the wind.
I would wrestle with my dogs.
I would wear jeans without irritation.
I would jump as high as I could.
I would crawl on my hands and knees like a bear.
I would wear whatever kind of clothes and textures I want.
I wouldn't have to choke down gross medications.
I wouldn't be overwhelmingly fatigued after every little task.
I would take big risks.
I would kayak and fish for hours, followed by a long uphill hike.
I would go hunting in the deep woods.
I would roll around in the snow and bask in the sunlight.
I wouldn't have to wear my various braces to alleviate pain/support my joints.
I would have unlimited spoons and I wouldn't have to worry about counting and tracking them.
I would sleep soundly through the night.
I would take the hottest shower ever.
I would play basketball and soccer, without fear of the consequences.
I would live in the moment.
I wouldn't worry about what the uncertain future holds for me.
I would be set free from the shackles of CRPS if only for a day.
Most of all, I would savor the moment, because when the clock strikes midnight, the pain will return with a vengeance.
One day, someday, my Lord will set me free from these pains and ailments. But until that day, I am holding on to hope always.
Keep your chin up and charge the mountain!