spillthebeans

So, we've already talked about being a spoonie. But what if you don't have a diagnosis? I've been there. And it's awful. For years, I suffered from random headaches. We had no idea where they came from. We thought it was my hair weighing my head down, so I cut it all off. We thought it was corn syrup, so I quit eating that. We tried solution after solution, but nothing seemed to help. Even after cutting my hair and avoiding food additives, I still got headaches. In addition, there were all sorts of random symptoms. Dizziness and nausea. Exhaustion. Overstimulation. I couldn't seem to exert myself at all. Even as a little kid, when we went to an event, I'd come home, cry, and conk out. If you know the symptoms of fibromyalgia , it probably seems obvious to you what I had. And in 2010, we finally figured that out, too. But before that, there was a long waiting period. And quite honestly, it sucked. Not knowing what's wrong with you is one of the hardest things...

For a long time, my identity online has not included the fact that I'm a spoonie. (As a very-related side note, please read the spoon theory . It may change your life. Thanks to the spoon theory, we chronically ill people fondly refer to ourselves as "spoonies.") Online, I will occasionally mention that I have fibromyalgia and PCOS, and it's not a secret , per se. But I haven't talked a lot about it. The reason for this is that, honestly, the online world is my escape. Ever since I can remember, whenever I'd feel sick or lonely or crappy in any way, I would turn to the internet. There, I didn't have a faulty human body to hold me back. There, I felt free. (This is also probably why I'm a writer and why I loved to read as a kid.) So, whenever I've tried to write about chronic illness, it's been hard. It feels like my personal space is invaded by the crappy feelings of fibromyalgia, or a headache, or whatever I'm facing that day. It's no...

Pain is a warning. It’s what you feel when you stub your toe or when you hit your head on the doorway because you’re a 6’7” basketball player. Pain is what your body does when there’s something wrong. And it’s what I experience every day. But first, let me back up nineteen years. I was born. (Duh.) But the circumstances leading up to it are… intense, to say the least. If you were watching a movie of my life, I think you’d most likely be on the edge of your seat. At least, I’ve been on the edge of my seat for my life. My parents almost lost me twice; the first when my mom started bleeding during the pregnancy, and the second time happened when I was (trying) to come out and be born into the world. Oh, and there was actually a third time, which happened when I had to have heart surgery at only two days old. But I made it through. Fast forward to the present-day. Remember my lovely metaphors for pain at the beginning of this post? Well, it just so happens that I’m well acquainted with the...

Hey all! See that little "followers" widget on the sidebar? Unfortunately, it won't be there for much longer. Its formal name is Google Friend Connect, and it's being retired by Google on July 1st, which means you won't be able to use it to get updates from me anymore. In order to keep up with Spill the Beans posts, would you do me a favor and follow this blog on Bloglovin? Bloglovin is a great alternative to Google Friend Connect and when I signed up yesterday it was virtually painless. (No pun intended!) If you'd rather, you can also subscribe by email in the sidebar as well, or use another blog reader platform of your choice. I look forward to continuing this blog and having you alongside me on the way! Follow my blog with Bloglovin

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...

I lost 20 pounds this year. Most people would be glad to type that, rejoicing in reaching some New Years’ goal. I never intended to lose 20 pounds. I didn’t need to lose 20 pounds. I didn’t need to lose any weight. Especially not in the space of three months. Especially not because there were days when my stomach was so nauseated that the thought of eating was unbearable. Especially not because there were days when all I wanted to do was sleep until it all felt better. Especially not because there were days I was so tired and weary that I had no focus or energy. To look at me, you’d never know I was sick. People assume that I look young and healthy, so I must be. But the illness that edges my days, that keeps me on a six-hour schedule for my medication, that prompts me to carry fast-acting anti-nausea pills in my pocket, that causes me to bring water with me everywhere I go in case I have to take something, that keeps protein bars in my purse because if I get too hungry I’ll be nauseat...

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 ...