Five years ago today, a very simple accident became the most complex story I’ve ever had to tell. I am not bitter on this day, because I know that without this struggle I could not have become the person I am proud to be. And I ask the same of all of you, as no amount of anger, bitterness, or sadness can ease my hardships. As I near the upcoming treatment, I become more resolute because I fear completely forgetting normalcy, and that is not an option. We all must remember with daily struggles how lucky we are to have what we do, to be able to attend school, to be able to lift your head off your pillow in the morning… there is something to be thankful for. And remembering these blessings is truly how we as human beings triumph over the adversity in our lives. I know that an attitude of thankfulness has carried me and my family through these past five years. So today I ask that, instead of feeling mournful of a painless life I do not remember, that we look at our lives and feel a sense of pride in the hardships we have conquered. Thank you all so much for your continued support and prayers; your care reminds me daily of why I am here.
Going back
Hello all, I sincerely apologize for not updating in the past couple of months…after everything that happened 10 days after I returned home from our last Florida trip I didn’t have the strength to post any updates of how I was feeling. However, I am so thankful to everyone who has continued to check for updates and for the prayers that are being sent my way. When I had gotten back from Florida everything was great and it was amazing to feel like myself again, I was a person I hadn’t been in a very long time. I got to go to prom (and had an amazing time), my teachers got to see me not limping or using a crutch, and my friends got to see my true colors. As most of you know, though, roughly 10 days after I got home, I noticed growing fatigue and then fast and furiously, my pain returned to the level it had resided at before the treatment. It was one of the most disheartening experiences I’ve ever gone through, and I’m hoping and praying (and asking for everyone else’s hopes and prayers) that I do not go through that experience again. My friends and family and I are hopeful and are doing everything in our power to make sure that this set of treatments is as successful as we can influence it to be.
My mom and brother will be joining me on this trip and I’m so excited that Joe can be there for the entire trip this time. I’m extremely disappointed and sad that my dad cannot make it this time though, I will miss his comforting humor and his childlike excitement at seeing me start to improve.
Once again thank you all, and I will do my best to keep everyone updated on how I’m feeling and how the treatments/the entire trip is going.
Love you all, (including a prom photo)
Kathryn
Kathryn’s thoughts after infusion #2
Hello all, and thanks so much to everyone who’s been thinking/praying/lending any mental support to me and my family the past few days because I’m sure that is truly what has helped me be most comfortable throughout this trip. The past two days (as most of you know were the first two infusions) have certainly been experiences for me that I will never be able to describe vividly with words or even dramatic hand gestures. The first day was very easy-going, and only had problems at the very end when nausea took me over momentarily, and thank God they have effective medication for this unhappy side effect that was extremely successful today. However, a big part of what made the first day so comfortable, was having my big brother Joe there. He was amazing and I miss him and am thankful for the time he could be here more than I can say. BUT, my parents were extremely supportive today and comforted me through a bit of anxiety and A LOT of the sillies. I’m hoping that tomorrow and the next day I can walk in with a clear mind and get the dosage up high enough to accomplish the overall goal of this treatment. Please continue to pray/meditate/send good thoughts my way and my parent’s way as we go through a major move in location while also dealing with the after shock of the Ketamine. We have had a few discussions with the major objective of finding out what makes me more comfortable while I’m under the influence and I must say that this experience is giving me a entirely new respect and gratefulness towards my parents and therefore is making us closer as a family. And to add on to the good news, I have noticed a significant decrease in my alodenia pain (severe skin sensitivity) and my overall average pain level has gone from a 9 to a 6 or 7. I’m so excited to see how I feel this weekend and even if I gain no further improvement but the improvement I’m already noticing, I’m thankful for ANY relief that I am granted. Although, I’d sure love for all my pain to be taken away as well as my parents and probably everyone reading this post would rather. :p
All my love and thanks to everyone 🙂
Kathryn MacDonald
What I Love…Where I’m Going
I’m not a fan of talking about my pain or what I experience on a daily basis so don’t expect to read TOO much about that throughout this section. I’m a normal teenage girl in that I could spend a whole day in bed watching any movies based off of a Nicholas Sparks novel. BUT, even though I do enjoy a good chick-flick, the day in bed would not be a result of the teen-age lazies or a boyfriend break-up. It is because I can’t force my legs to get me out of bed.
Anyone with chronic pain will tell you that pain is something that takes over your world, as it has definitely tried to do to mine. However, early on in this experience I found that distraction helped me to ignore the pain’s growing hold over my body and mind. So because of the need for distraction, school and socializing have always been something I wanted to do. However, like many kids with CRPS, I had to have home-bound instruction at times and I hated it. I had great teachers and I loved them, but I need to be at school, even when it’s very hard to be up and moving.
Music has had an amazing influence on my life and has also played the role of distractor from pain. I have been playing guitar for 9 years and have been studying classical guitar for 5 years, and I think that the actual language of music will always amaze me and make perfect sense. My favorite bands are Fleet Foxes, Grizzly Bear and Radiohead. Certain intervals and genres of music emote different chemical reactions in our brains and cause us to feel certain ways, and I believe EVERYONE should find the sound that causes a chemical reaction they like the most, aka (what I call) “finding your groove”. I use “my groove” to help me feel better on a daily basis. And most importantly the person that has inspired me the most in music and has definitely helped me realize the healing powers of music is my big brother Joe. He’s my best friend in the entire world and without him, his literacy in music, and his loving, protective, and amazing personality. He’s the one person that I barely ever disagree with and I am more than lucky to have him as my mentor, and more importantly as my big brother.
I’d also like to give a quick shout out to the friend that has changed his life and daily routine to help me through everything I’ve been going through in the past few years and has been as much of a dependable distraction as a 17 year old boy could be 🙂 Derryk, you have been a Godsend to my family and especially me.. I love having you as my daily distraction and I hope that after this trip, you’ll be able to be less of a distraction from my pain and more of my bestfriend that I can have fun with, please always be my best friend even though we argue about the silliest things. My family and (especially) I, love you like you are our family, heck we already consider you a part of the family. Thank you so much for everything you’ve done for my family and for me.
Also, I want to thank everyone that has helped me and my family in the past few years and especially everyone who is visiting this site, leaving extremely supportive comments and praying for me. It is overwhelming to see how many people truly do care about me and my family and how many of you are thinking about me. However, part of the reason I wanted to share my story is to raise awareness of this awful disorder. So many physicians have NO idea what this is and I want to put an end to that. I want people to know what this is and look for symptoms, because not getting treated right away can turn into years and years of pain that I would not/could not wish upon anyone else. So yes, thank you so much for thinking about me and getting to know my story, but use my story to educate yourself and others. I am hoping to do the same by 1.Sharing my story and 2. Going to MCV to (hopefully) become a pain management specialist, because no matter what type of disease, how it happened or the patient themselves, I know how pain can effect your family, your work/school, and especially yourself and psyche.
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