Oh boy, now this one might be long so maybe I should do it in parts. I've had health issues since I was a child. I started physiotherapy for Patella Femoral Syndrome and Osgood-Schlatters between 9 and 10 years old. Both of these knee conditions involve pain from overuse and/or puberty. Then later on when I was 11 years old I had an accident where I broke my left ankle in a very stupid and embarrassing way...Running in high heels at 11 years old... So after that accident I had a cast put on for a 3 week period only to find out that when they were sawing it off, it was put on wrong. Instead of having my foot flat, it was almost as if I was pointing it like you would in ballet. So another 2-3 weeks in a different cast, and I started to feel this weird pain in my toes on the same foot. I thought nothing of it. Then after the cast was removed it started to hurt even more and my toes looked like mini sausages. The skin was shiny, sensitive to the touch and just a wicked amount of pain. It was just after my 12th birthday that I had been diagnosed with Reflex Sympathetic Dystrophy, which is now known as Complex Regional Pain Syndrome (I usually just call it RSD or CRPS to save time though...).

There are two types:

  • Type 1. Also known as reflex sympathetic dystrophy syndrome, this type occurs after an illness or injury that didn't directly damage the nerves in your affected limb. About 90 percent of people with complex regional pain syndrome have type 1.
  • Type 2. Once referred to as causalgia, this type follows a distinct nerve injury.

It was never specified what was the cause of it but, puberty, PTSD, and the improper cast placement could be contributing factors according to doctors and specialists. I have tried multiple different treatments but again that's another blog post...

Through out the years I have been diagnosed with other chronic illnesses that basically go hand-in-hand with RSD/CRPS. Irritable Bowel Syndrome, Chronic Fatigue Syndrome, Disintegrating Disc Disease, Depression, Anxiety and Fibromyalgia.

The Fibromyalgia diagnosis was actually a shock because it was 5 years late. This amazing doctor that I had met 5 hours from where I live was the most honest and compassionate doctor there was. He had told me that I had fibromyalgia since about the same time I had been diagnosed with RSD/CRPS. He told me that my doctors back home didn't want to tell me because they didn't want to be the ones to deliver the bad news and give me a "life sentence". So there I was years later, and I had never been told that I had one of the most painful diseases. I could have been doing alternative treatments... It was extremely frustrating and I had felt cheated. THAT is when I begun the most successful treatment of all. Marijuana. And that will be in many blog posts to come so, look out.

I have a lot of things going on medically and I can definitely say I've learned a lot of valuable things. There is so much more for me to write on the subject. Between treatments, medications, hurdles I overcame, bullying, ignorant doctors, and multiple diagnoses, there will be lots to write about.

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Moderation.... I have a love-hate relationship with this word... It's very necessary but it's also very frustrating. At my chronic pain support group last week we discussed things that we do, that we KNOW will make us flare but we do it anyways because we love it. Even when we are choosing to "overdo" something, it still has to be done in moderation. My "thing" that I do is go to movies with my boyfriend. It may seem like nothing to a healthy person, but for me this means sitting in the same spot for 2+ hours and not being able to get up to walk around, use my medication or lay down. Why do I do it? This is something that my boyfriend and I have done since we started dating, it's our thing, and I'm not about to fuck that up with me feeling shitty, because I'll just feel shittier emotionally if I don't go. Though I can't go to a movie every other day, I still make a point to do it a few times a month at least. Moderation. Ugh. I really wish I didn't have to deal with it so often but alas, what am I going to do? Sit at home and cry about it? Psh. No. I've been through that already and I'd much rather live my life with some extra pain then not live at all and still be in pain...

To this day I'm still trying to find the right level of moderation for me, I often overdo things because I'm trying to keep up with the people around me. I'm 22 years old so everyone else I know is very much "Go, go, go!!" That's where the difference between a spoonie who is in their 40's or 50's is very different from a spoonie in their teens or 20's. My peers are (mostly) full of energy, walking quickly, can withstand loud music and do things for hours on end. Whereas I need time to relax and recharge after like 1 hour of activity.

NOW. I'm not saying it's easier for middle aged people to go through this because it's not easy for either age group, but I have found that when I see healthy middle aged people. They aren't out in clubs or whatever, they usually get tired faster because they've been through years of experiences. (this is a generalization and not in any way a belittlement.) It's hard when your peers are always going full tilt when I haven't even been able to do that since I was 11 years old.

My point of this blog is that it's hard to be able to keep up with my healthy friends and loved ones while still trying to moderate. I don't want to be the tag-along that everyone needs to wait for (which is often the case in big groups), I don't like have to moderate my time and pain, it's just annoying. It's important to find the right balance, but it's also extremely important to find people who can accommodate your needs as a spoonie.

Even though I've had to miss a lot of things in my childhood and teenage years, (that's another blog post)I've been lucky with the friends, family and boyfriend that I have. I literally do have the best family in the world, the most supportive boyfriend and the most accommodating and loving friends, so I'm truly lucky. I count my blessing everyday and whenever i'm feeling shitty about moderating myself, I think of the good things I have.

Be good to one another <3



This is where it all starts. You know, I was struggling to figure out what I should write first. How do I truly identify myself? Who is Katy? Well, this is how the story goes. I've lived in the same city my entire life and I would really like to explore the world more, try different cuisines and live in different cultures. It was one of my dreams until I realized that the possibility of it happening might not be so great. A lot of things in my life have influenced who and where I am today, obviously like every other human being. My story however, is a bit more rare than most. And that's why I created this blog, to document how I live my life with chronic illness but still maintain a certain level of normalcy. Not only was I 11 years old when I was officially diagnosed, but I have been in and out of physio since I was 9 years old. A lot of my life has been a giant question mark; a lot of questions and a lot of what if's.

BUT, even though it's one of the biggest things in my life, this blog isn't just about my chronic illnesses or my lows, it's also going to be about who I love the most in the world, and why they make my life incredible with their presence, things that make me laugh and funny anecdotes of my life. I try to live my life with incredible and inspiring people and with as much laughter as possible.

Welcome to my blog, where you'll hopefully learn some interesting things, get a laugh or maybe even a little tear.