spillthebeans

All of my earliest memories involve doctors’ offices. I have missed more Christmas Eve services than I have attended due to my apparent inability to recover from the common cold. I have a disease that even most doctors have never heard of. I am a full-time college student. When I was ten, my life ambition was to be a ballerina. Now, I just want to be able to live independently. My name is Susanna Karth and I have Charcot-Marie-Tooth disease. And a lot of other things too. Charcot-Marie-Tooth (CMT) is a hereditary, genetic, neurological disorder that causes sensory and motor function loss. Basically, my genetic code has a flaw in it that allows blockage to build up in my nerves (yes, directly in my nerves, I had no idea that could happen). The result is a disconnect between my brain and my muscles because my nerves can’t pass on signals. There are multiple ways that CMT can be inherited, and some types are worse than others, but all of them are incurable. In addition to CMT, I also have...

So! I know it’s been a little while since I last updated. And last I posted, my circumstances were pretty dire. Since then, I’d describe my life pretty much as a roller coaster, with plenty of ups and downs to make it interesting. Here’s the official breakdown: I started itching. August 22nd, 2011. I had an allergic reaction to a medication, which made my situation much worse. November 11th. The allergic reaction died down (but my hands felt like they took forever to heal).  Annoyingly enough, the itching didn’t go away (though it may have diminished, I can’t remember).  A few hellish weeks ensue. These were some of the worst moments of my life because of all the uncontrollable itching and burning. Throughout all of this, we thought I had a yeast overgrowth.  Since I wasn’t improving, we decided to do a test. Early December. Surprise! It isn’t a yeast overgrowth. I also discover that I have low progesterone and possibly high cortisol.  December 12th. My chiropractor ...

Once again, I apologize for my absence. The irony here is that I’m not feeling up to managing my blog for those with chronic illness… because I’m too busy struggling with my own chronic illness. The latest update in this saga is a doozy. Yesterday I got hives on my hands. This morning my mom emailed two of my doctors and both of them said to go off of the medication I’ve been on for the past three weeks because they think I’m having an allergic reaction. This medication was supposed to help with my nerve pain, but all it’s done is made things ten times worse. We’re not quite sure if I am indeed allergic to this, but time will tell. Until then, I’m dealing with even more agony than I thought I could withstand. It’s funny. I keep thinking things can’t get worse, and then they do. I keep wishing I could go back to the way I was back before this yeast overgrowth started, when I dealt with only fibro. Yes, it was pain. Yes, I hated it. But it was ten times better than what I’m going through...

I’m spending the week with one of my closest friends, so I’ll have to ask you to forgive my absence. It’s been a whirlwind already but one of the best times I’ve had in a long while. It’s been amazing and I’m loving it so much. In the meantime, my fibromyalgia does not let up when I have company—if anything, the symptoms are even more unfortunate when I do have friends over. I’ve already had a splitting headache once, last night, and today I’m feeling very fatigued. I’m on a new medication that has a side effect of sleepiness and dizziness, and those side effects hit especially hard today. Despite this fact, I just got done having immense fun outside with my friend and siblings—doing a photo shoot and making amateur videos. It was great fun, but now I’m beat. One of the things I’ve been working on is being more open and honest with my friends when I do feel awful, and so far it’s paid off well. It means the world to me to have my friend understand and know that I’m not feeling well. Ev...

I don’t talk about it much online, and I really don’t have a true reason, other than, I honestly don’t think about it much anymore. But, a dear friend (Oh how much more she has gone through) sparked the inspiration to talk about my thorn. I have Knee Bursitis. Bursitis is a condition where the padding in your joints (called Bursea) becomes inflamed. It’s pretty painful at times. Thankfully, it isn’t an all the time ache (Thank the Lord) but when it does, it can get pretty crippling.   I’m not going to go into much detail over it, except, that when you can’t run, or be terribly active because otherwise, your knees feel like they are about to crumble, and make you fall, you feel....awkward.  It’s no fun having to sit out at your brother’s 5K races, and tell everyone “I don’t like running” when, there is nothing you;d like more then being able to try at least once.  When all your friends try goading you into running on Thursday nights with them, and you can’t, because you k...

Welcome to Spill the Beans! It isn’t much yet, but I’m working on it. The purpose of this site is simple: to serve as encouragement and community for teens with chronic pain or other chronic illnesses. I personally have fibromyalgia, so this blog will tend to focus on that more than anything else. However, I don’t want to limit this blog to just fibromyalgia or even just chronic pain. This blog’s focus is that, yes, but let’s face it: having ANY chronic illness when you’re a teenager can be an absolute pain in the butt. I’m here to tell you that you’re not alone, and hopefully you can remind me of that from time to time, too. And remember… normal is just a setting on your washing machine. Love, Sky