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 ...

I never wanted to be the weak one. And yet here I am. Everything has come to a head today. I am fatigued. So, so tired. I'm barely sleeping because I'm itching and anxious. The itching and anxiety are directly connected it seems; when I have anxiety, my skin feels like it's burning from the inside out. And unfortunately, that's pretty much been all the time. People say all the time, "you're so brave. you're so strong. you're so positive." Honestly, I don't feel that way. I have yelled at my mom this week more times than I'd care to count. I've cried and cried and cried and cried. I've yelled at God, I've been so angry. I've punched my mattress a few times because I literally do not know how to handle this. I'm not as positive and great at this as everyone thinks I am. I'm really not. I'm kind of having a breakdown today. It's been two months of a living hell and I want it to stop. But it won't stop. I fe...

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...