I’m so sorry that you’ve gone what you went through buddy. I’m sorry that those guards were abusive to you. I’m sure there was more abuse I didn’t about. No dog should be locked up in a crate 23 out of 24 hours of the day. You didn’t deserve it and no dog does. There was no kiss I could give it to make it better. I’m sorry there weren’t enough cuddles, games of tug, fetch, treats, and mooching for food off my plate to fix all the abuses of your puphood and I’m sure many more things I didn’t know. I’m sorry I couldn’t say goodbye because I was in the ICU.
I got to teach you so many new skills in our time together. You are a brilliant dog. Even on your distant days, you were right by my side, alerting me to incoming danger. Your Momma and your Grandmama will miss you sweet boy. I know that Dave misses you everyday terribly too.
I don’t know where you are headed to next on this journey of life, but remember this, “I love you forever. ’ll like you for always, as long I’m living my Finns you’ll be. They tell me I’m a million in million person, but a one in a million person needs a one in a million sidekick. You’re my sidekick.
Until we meet again my friend,
Your Loving Handler, Meg
1 You have searched me, Lord,
and you know me.
You know when I sit and when I rise;
you perceive my thoughts from afar.
You discern my going out and my lying down;
you are familiar with all my ways.
Before a word is on my tongue
you, Lord, know it completely.
You hem me in behind and before,
and you lay your hand upon me.
Such knowledge is too wonderful for me,
too lofty for me to attain.
Where can I go from your Spirit?
Where can I flee from your presence?
If I go up to the heavens, you are there;
if I make my bed in the depths, you are there.
If I rise on the wings of the dawn,
if I settle on the far side of the sea,
even there your hand will guide me,
your right hand will hold me fast.
If I say, “Surely the darkness will hide me
and the light become night around me,”
even the darkness will not be dark to you;
the night will shine like the day,
for darkness is as light to you.
For you created my inmost being;
you knit me together in my mother’s womb.
I praise you because I am fearfully and wonderfully made;
your works are wonderful,
I know that full well.
My frame was not hidden from you
when I was made in the secret place,
when I was woven together in the depths of the earth.
Your eyes saw my unformed body;
all the days ordained for me were written in your book
before one of them came to be.
How precious to me are your thoughts,[a] God!
How vast is the sum of them!
Were I to count them,
they would outnumber the grains of sand--
when I awake, I am still with you.
If only you, God, would slay the wicked!
Away from me, you who are bloodthirsty!
They speak of you with evil intent;
your adversaries misuse your name.
Do I not hate those who hate you, Lord,
and abhor those who are in rebellion against you?
I have nothing but hatred for them;
I count them my enemies.
Search me, God, and know my heart;
test me and know my anxious thoughts.
See if there is any offensive way in me,
and lead me in the way everlasting.
I’ll never forget November 10, 2012. It was the weekend of my high school basketball team’s annual grade school basketball tournament and everyone was running back and forth between working games, squeezing in practices, and playing our own preseason games. It was a crazy weekend for everyone involved and it was fun chaos. Although tiring, the grade school tournament was a fun event each year and I loved watching the up and coming players.
That Saturday, my team and I were playing in a preseason tournament at South Fayette High School. That morning I played several games on both the JV and Varsity teams. My coach and most of the varsity team had to head back to our school to work the games, but he asked me to stay behind and play with the JV team too. I quickly agreed because I never declined a chance to play an extra game. As I was lacing up my shoes for the game, an unusual wave of emotion came over me and it caught me off guard. Something about that moment told me that this would probably be the last high school basketball game I ever played in. Earlier in the week, I had had a quantitative sudomotor axon response test (QSART) which is a fancy name for a sweat test. When I had the test, the technician read off a list of symptoms and I was to indicate which ones I had. I.had.every.single.one. We didn’t have the results yet, but something made my mom and I both think the test would come back abnormal. We wouldn’t get the results until November 14th, but until then, I was allowed to play ball.
So back to the game, a little voice inside me whispered, “If this is going to be the last basketball game you ever play, how do you want that game to look? How would you want to play? What kind of player would you want people to remember you as?”
I took that as a sign, so during that game, I sprinted faster, jumped higher for every rebound I could get my hands on, passed the ball around to the open shooter so they could take the better shot, became a more vocal leader on the court, and I even snatched up a pair of steals. I ended the game with 9 points, a handful of rebounds, a few assists, 2 steals, and 4 fouls, which is a pretty solid game for me. I am definitely proud of my performance that game. I left it all on the court that day, not knowing if I would ever get to play basketball again.
As it turned out, the test did come back very abnormal and on November 14, 2012, my basketball career officially ended. I would fight to try and get back to the game, but I never managed to make it a reality. So now my challenge to myself and others is, if you knew that it was going to be the last time you would ever be able to do something, how would you play that game, live that day, etc.? Try your best to make everyday look like that day and the list of things to regret should be relatively short. I apply this concept to everything I do in life now, because you never know when the timer is going to run out. For so much of my basketball career, I took the game for granted. I never really had any injuries from the game despite my very physical playing style. But that day, I knew I only had one last game and I knew how I wanted to play it.
This October-November marks five years of battling the fiery, cold burn of Reflex Sympathetic Dystrophy/Complex Regional Pain Syndrome (RSD/CRPS). So I feel like it’s time to write a letter to my 16-year-old newly diagnosed self... I hope that newly diagnosed patients can also learn something from this.
Dear 16-year-old Meg,
You’ve just embarked on a perilous journey that you want nothing to do with. I know you are in a level of pain most people will thankfully never experience, but I know that is very little comfort and you have no idea how you are going to make it through the next minute. I understand that you are severely sleep deprived and that making your body function at the bare minimum is a challenge. You can’t imagine how you are going to play basketball again or ski this winter, if you barely have enough energy to get through the day. You are wondering how you will ever finish your junior year. Will you ever drive? Will you ever manage to have a job? Will you manage to graduate from high school? Will you go to college? Will you graduate from college? Is the world ending?
Although you thought for sure that your world was coming to end most days, I’m here to tell you that five years later, your world hasn’t ended. You finished your junior year with your straight A’s. You learned to drive and got your license. You have had jobs. You earned your EMT certification. You graduated high school. You went on to the college of your dreams, Pitt, and even though you haven’t graduated yet, you will graduate in a year. You’ve done so many other things as well, that wouldn’t have happened if you hadn’t gotten sick. You wouldn’t have so many of your friends if you didn’t get sick. People you can’t imagine life without.
Now, at 21 years old, you know that life is so very fragile and precious. You’ve learned that life is not measured by the number of breaths you take, but by the number of moments that take your breath away. You’ve fought for your life several times. There were times you didn’t think you would win. There were times you shouldn’t have won, but by God’s will, you pulled through. Let’s just say the limits of your body have been tested.
The journey has been challenging, but it hasn’t all been bad. There has been some amazing good come out of this as well. You’d learn who really has your back; who’s really going to be there for you at 2AM texting with you during a flare, who’s going to come over and hang out with you and watch movies because you can’t move from bed, who’s going to rescue you in the middle of winter when your wheelchair gets stuck in slush in the middle of Forbes Avenue and the list goes on.
You’ve made it through five years of battling the fiery monster kid. Hopefully in the next five years they will find a cure, but if they don’t, know that you will crush the next five years too.
Keep your chin up and charge the mountain!
November is Reflex Sympathetic Dystrophy/Complex Regional Pain Syndrome (RSD) Awareness Month. RSD/CRPS is a neurological disorder driven by inflammation in the body. On the McGill Pain Scale, RSD/CRPS ranks between 42 and 46 out of 50 higher than cancer, childbirth, and amputation of a limb without anesthetics, making it the most painful condition known to modern medicine. It is safe to say that I have never felt any other pain as severe as the RSD/CRPS. Symptoms include: burning pain disproportionate to the injury (some people don’t have an injury to cause it), temperature changes (either extremely hot or extremely cold to the touch), skin color changes (purple, blue, brown, bright red, mottled), skin texture changes, swelling, changes in hair and nail growth, hypersensitivity to touch (allodynia), hypersensitivity to painful stimuli (hyperalgesia), and many, many more. There is no cure and no FDA approved treatment, but treatment focuses on controlling symptoms and preserving function of the extremities.
October 17th of this year marked 5 years since my nightmare started. October 18th was my unofficial CRPS diagnosis. November 14th, 2017 is 5 years since my official diagnosis.
I’ve learned a lot on this journey and I’ve had some pretty amazing people helping me along the way. It has been a long war, with many smaller daily battles, but I’ve learned that I have to keep moving forward. The pain doesn’t stop, I’ve just adapted and learned to live with it.
When are people going to realize that both HPV vaccines, Gardasil and Cervarix, are the latest Thalidomide-caliber scandals? There is a portion of certain people's aluminum processing somewhere in the immune system, which is why only some get sick from it and others. The numbers of those injured are older (and thus much higher) and only from the U.K. The last stat I saw a few months ago was that 600,000-750,000 young people were Vaccine injured worldwide.
(The legitimacy of the argument against the HPV gets ruined when anti-vaxxers claim that all vaccines are bad and that they all cause autism. In their eyes, it's all the vaccines' fault and so many refuse to acknowledge that some people may have a hypersensitivity to it. If that were the case, everyone would have medical problems.)
I think that at least one of the genetic mutations causing this adverse is call MTHFR and if parents are going insist on this for their child, at least do research and check for the presence of the gene mutation.
I also want to concrete evidence that the vaccine prevents HPV and that HPV causes cancer, neither of which has been proven in an unbiased clinical trial.
I fact-checked every part of these two videos, so I know the facts are legitimately. This is parts 1 and 2. Part 3 should be released soon.
To the Professor that is determined to help me succeed no matter what it takes,
I sent you an email with my paper attached in case I found myself admitted to the hospital the day our big paper was due. You were aware I was struggling with my health and that a surgery was coming up later in the semester. You got my accommodations form from the Disabilities Resources Office at the beginning of the term and we met briefly to discuss what each of my accommodations means. You were amazingly accommodating and for the majority of the semester, I didn't need my accommodations much. When I told you that I needed to use them, you didn't hesitate and you asked what you could do to best help me.
Ever since insurance denied what is a life-saving medication for me, my health has been rapidly declining. I wanted to make you aware of some of the things that are going on with my body currently. I didn't want pity, but I did want to help you understand the magnitude of the situation.
Due to a rare neuroautoimmune disease called Stiff Person Syndrome (SPS) (which I describe as full body charlie horses on steroids combined with some twisting of my limbs), I've lost all the progress I made on my treatment. I am definitely worsening, as my already inverted feet have contracted inwards even more than they were. This is reducing circulation and making my feet ice cold 24/7 with a blue/gray color to my skin. The tension on my Achilles' tendon is almost unbearable. My back muscles are spasming almost constantly now, which makes sitting up in a wheelchair hard. My arms have stiffened significantly, which is significantly impeding my ability to push myself in my wheelchair across campus. One particularly bad spasm popped my right hip out and another popped my shoulder out. Throat and neck spasms are making it hard to swallow without choking on my medication, food, etc.. My voice can be very soft and raspy, which is not normal for me and it makes participating in class discussions hard. Without treatment, I can stop breathing which, as I'm sure you can imagine is very serious. I haven't been in this much pain in a long time and it's a level of pain I can barely tolerate.
The reason I am telling you all of this is because the spasms shake me uncontrollably, which can be distracting to others. This is not a type of movement I can control voluntarily. Spikes in pain are extremely disorienting for me, so if I look like I'm zoned out, it's because of the pain; no disrespect intended.
My plans, provided my body doesn't make other plans, is to be in class everyday. Unfortunately, when I make plans, my body laughs and flares up, making my day even more challenging.
We have kept the lines of communication open and when you have questions, you aren't afraid to ask, which helps me out so much. You remind me that my studies are important, but if my body isn't functioning the way I'm used to (my status quo), classes shouldn't even be a concern. Now being a super studious student, I do whatever it takes to get my assignments done and turned in on time. You've even allowed me to turn in assignments early and give my presentation to the class earlier when I was feeling more like myself. If there were more professors like you, I am confident that more individuals with chronic illnesses and disabilities would find more academic success in college.
Thank you for all the support during this challenging journey. I would not be as success in my studies and on the Dean's List every semester if it weren't for professors like you! Please continue to tell your colleagues to have an open-mind and a willingness to help the students that may need some extra help.
To the doctor that doesn't feel like he is doing enough for me,
Thank you for seeing me as a human. Many doctors can't see past my medical record number. I've found that is it rare to find a doctor that is committed to improving my quality of life. Living with multiple painful conditions is very tiring and exceedingly hard to treat as well. At this time, there are no cure for any of my conditions, so we simply do our best with symptomatic treatment.
When I was first plunged into the world of chronic pain and illness at 16, you were the first doctor that I saw. You recognized the complexity and abnormality of my case, but it didn't scare you away immediately. You prescribed me some anti-seizure medication and did a nerve block on me. The relief from the nerve block was so short-lived, it wasn't worth repeating. Because I was a pediatric patient, you and you were an adult doctor, you then sent me to my hero, the physician that would effectively treat me for the next 4 years.
I don't think you understand how much that doctor you referred me to meant to the four years of my life that would follow. Prior to him, my quality of life was poor. I couldn't play basketball, attend high school regularly, or work a job. That doctor changed my life with regular specialized infusions that you didn't have the capabilities to offer. I never would have found this doctor or this treatment without your help.
When that doctor you referred me to was forced to unexpectedly step down with no one in his place, I needed some more guidance on what to do next. Because I was no longer a pediatric patient, you could see me again. You couldn't help treat my CRPS, but you referred me to another excellent doctor out of state that could. In addition, you agreed to manage some of my smaller pain issues closer to home.
You don't see this, but every time you inject medication into my muscles to help them relax or inject steroids into my SI joint, you are increasing my quality of life by decreasing some of my more minor pains. Some days that makes all the difference between going to school and work or not.
I hope someday you can find peace in knowing that I know that you are doing everything in your power to help me. These procedures probably seem insignificant to you because you do so many, but they change my life dramatically. I can tell that your "lack of options to help" both saddens and frustrates you. You can see it in your eyes. I want you to know that l know that you are doing everything you can.
Your Youngest CRPS Patient
A couple of weeks ago, I was teaching a taekwondo class when my instructor initiated what we call a "life skill talk". That month, the life skill was self-control. He introduced the question by asking the kids what his favorite animal was and after a few guesses, he said that it was a duck. Above the water, ducks look perfectly relaxed and content, but in the water, their feet are treading water furiously to keep them afloat. In this particular situation, my instructor was trying to demonstrate to the kids that you have various thoughts and emotions, but they don't have to show. For example, the kid might be hyperactive inside, but they don't have to act the way they are feeling.
I think the same idea is applicable to people with invisible conditions. On the outside, we do our best to appear normal. Makeup may be applied, hair may be nearly groomed, and clothes may be freshly ironed. On the outside, like the part of the duck about water, it looks like absolutely nothing is wrong. A pleasant smile, a firm handshake, and some good conversation are all outsiders can see. There may be scars, braces, and/or mobility aids, but the person still appears mostly "normal" on the outside.
On the inside, there's a constant battle going on. The body is fighting constantly and the mind may be fighting as well, because of the body's fight. Patients may be worrying about an upcoming scan, waiting for test results, dealing with incompetent doctors, fighting the insurance company for a much-needed treatment, trying to get on disability after several denials, or stressing about an upcoming surgery or procedure. Then there's the financial pressures that often come with long term illnesses, helping family and friends to understand needs and limitations, and of course, dealing with all the people that say "It can't be that bad" or "You are lucky it's not worse. You should be very thankful." And who could forget the glares we get in the parking lot for parking in a handicap spot, because we "look perfectly healthy" or in the case of younger people, we are "too young to need that spot". "Stop stealing grandma's placard!" All of this is on top of typical life stressors and duties. Sounds overwhelming, right? It is!
Unfortunately, these stressors must be dealt with everyday, because chronic conditions do not take the day off. Therefore, people with invisible conditions are constantly stuck in a life similar to a duck. Everyone is like a duck in some ways, because we all have to exercise self-control while dealing with inner turmoil throughout our lives. People with invisible conditions have a bit extra to deal with constantly.
When I was first introduced to the song "Hills and Valleys" by Tauren Wells, I broke down sobbing. Music rarely makes me cry, but five years of life with Stiff Person Syndrome (SPS), Complex Regional Pain Syndrome (CRPS), and many, many other conditions, I was at a point in my life where I was so frustrated. The treatment for my SPS had stalled, wasn't helping, and my doctor didn't seem like he was really trying to help me. The infusions I needed for my CRPS were no longer covered under insurance and out of pocket expenses would be $25000 a round with 3-4 rounds a year. Add the stress of other conditions, college academics, and other life responsibilities and I was overwhelmed.
When we walk in the darkness, we are constantly searching for light. Someone to help us, someone to listen, and someone to simply say they care. Everyone has "hills" and "valleys". Our "hills" are our better times and our bigger accomplishments and our "valleys" are the times that life tries to break us. But if we wait out the valleys and climb to the hills, life didn't succeed at breaking us. After all, if you're reading this, your success rate of getting through the most excruciatingly painful, emotionally miserable, depressing and tragic times is 100%. All the times that life got tough, you were tougher than whatever struggle you faced.
Yes, this is a Christian based song, but even for those that aren't religious, there is something to be gained from listening to this song, even once. Now, I listen to this song every morning. It reminds me that no matter where my day takes me, school, work, to the hospital unexpectedly, or a relatively easier day, it's not as bad as the deep valleys in which I've found myself.
When you change your perspective and see life as a series of hills and valleys, you learn to value the time you have on earth.
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!