Susanna Karth Spills the Beans

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 anemia, scoliosis, pectus carinatum, and costochondritis. Having only one of those diseases can be problematic; having all of them at once is dreadful. Fatigue is a symptom of both anemia and CMT. Chronic pain is a symptom of scoliosis, CMT, and costochondritis. Physical deformities are a symptom of scoliosis, pectus carinatum, and CMT.

Just in case you don’t know: scoliosis is a curvature of the spine. Sometimes adolescents will wear a brace to prevent the curve from getting worse. They diagnosed mine too late.

Pectus carinatum is a deformity of the chest that occurs when the sternum bone sticks out. Most doctors think it doesn’t causes any problems. They’re wrong. One of the possible side effects is costochondritis, which is inflammation of the cartilage around the breast bone. It has no known triggers, but is exasperated by the sternum rubbing where it’s not supposed to and physical activity.

I have always known that I’m not completely healthy. I could never run as far or as fast as the other kids. I fell down the staircases (a lot). I walked into chairs and open cabinet doors (a lot). Whenever I got an upper-respiratory infection I would be sick for weeks (or months). No one ever could figure out why though. I was clumsy, needed to build up my endurance, take more vitamin C, etc. Of course there was nothing really wrong with me. It’s always obvious when kids are seriously sick, right? Sure.

I trip a lot when I’m walking, and it’s not usually a little trip either. Most of the time when people see me trip they reach out to grab me in case my face wants to meet the floor. Kind of scary, that. To help prevent trips and falls, I wear AFOs (ankle foot orthotics), just call them leg braces if that’s easier. Mine are a bright purple, because if I have to have ’em I might as well rock ’em.

To prevent my fatigue from getting too excessive, I also ride a powered scooter around campus. It’s awesome, except when the hallways are too narrow or the elevators take too long or people don’t actually take the time to observe their surroundings and stand right in front of the handicap button for the door and don’t hear me when I ask them very politely to move.

Sometimes people ask me if I’m okay because I look like I’m in pain. No, duh. Really?

Sometimes people ask me when I get the braces off as though it’s a cast or something. Um, when these are worn out and I need a new pair.

I used to be really good at ballet. Now I can’t even point my toes properly.

The other day I got asked why I used a powered scooter if I wasn’t a cripple. I just stared at the guy and waited for him to actually look at my legs. It took him about thirty seconds to observe the bright, purple, very noticeable leg braces.

That’s probably enough depressing stuff for one day. If you’re like me, some days you hate even thinking about all that medical stuff that’s going on in your life because it hurts enough to make a saint swear and it’s all just too much. Other days you want everyone to know all about it so they can maybe understand, and even if they don’t understand they can at least try to somehow support you. And then there are the days when you are just mucking along because you have a chronic disease and that’s just the way life is. No big deal, except when it is.

Just remember: you can do this.

No, really, you can.

You may need extra down time every day to have enough energy to function. You may not get out much because it’s usually not worth the effort. Your social life may consist of doctor’s visits and the Internet, and that’s okay. You may be functioning just fine and all you need is an extra little boost every day. Either way, you’re still living your life and you’re still pushing through.

Sometimes it all becomes too much (usually on those days that I got only five hours of sleep instead of my desperately needed nine) and I just curl up in bed and cry. And that’s okay. There’s nothing wrong with acknowledging that hopeless feeling that you will always have this disease unless by some miracle those research studies find a cure in your lifetime. Just remember that you can get through this. You can live your life without letting that chronic illness define you.

CMT is a part of who I am, because I would not be me without CMT. But I do not let it control my life.

A lot of people have prayed that I would be miraculously cured of my various conditions. I’ve gotten to the point where I never ask people to pray for healing, only for strength to get through the day. What many of them do not realize is having strength to get through the day without having a complete meltdown is a miracle in and of itself. Besides, what is the greater testimony: being cured of a disease that no one knows about or continuing to live my life without giving up on God?

And finally, because I am a nerd:

“Never give up. Never surrender.”

“Just keep swimming.”

“Keep moving forward.”

“We are between the paws of the true Aslan.”

My Own Personal Rollercoaster :: A Timeline

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:

1. I started itching. August 22nd, 2011.
2. I had an allergic reaction to a medication, which made my situation much worse. November 11th.
3. The allergic reaction died down (but my hands felt like they took forever to heal). 
4. Annoyingly enough, the itching didn’t go away (though it may have diminished, I can’t remember). 
5. A few hellish weeks ensue. These were some of the worst moments of my life because of all the uncontrollable itching and burning.
6. Throughout all of this, we thought I had a yeast overgrowth. 
7. Since I wasn’t improving, we decided to do a test. Early December.
8. Surprise! It isn’t a yeast overgrowth. I also discover that I have low progesterone and possibly high cortisol. December 12th.
9. My chiropractor puts me on a supplement to help my liver. Around Christmastime.
10. The itching stops for about a week. A MIRACLE, I TELL YOU!
11. I accidentally run out of the supplement and the itching starts back up again. 
12. I get back on the supplement, but still itch. Sometime in January.
13. My hands get extremely red and chapped. Mid-January.
14. I go see my chiropractor, who notices my hands and thinks I’m having an allergic reaction. (Yes, again.) January 21st.
15. I am given allergy drops. We suspect that the perpetrator is corn.
16. Therefore, I go off corn. 
17. I am still itching. It’s gone down, but still is there.

And that, my friends, is where we are right now. There’s not much I can say that hasn’t already been said. I’m hanging in there, but it’s hard.

A couple of weeks ago, I looked up substitutes for corn... and let me tell you... it’s in everything. I’ve discovered that I will have to go off many of the things I eat now, such as my chicken and wild rice soup. And my protein shakes, which I use to keep my blood sugar from crashing. And xylitol, which I use as a sugar substitute since I have high insulin levels. We’re torn on whether to go off some, all, or none of these things, so that’s still in flux at the moment. My diet is already so limited because of jaw pain and my dislike for certain foods, so this has been a pretty hard blow.

So, I’m not going to pretend it’s not hard, because it is, and I’m not happy with any of this at all. I’m hoping that someday, somehow, all of this will get better. Please keep me in your prayers, and if you guys have any corn allergies, I’d love any suggestions you have to offer!

Weak

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 feel abandoned by God, like He isn't listening. I feel lonely. I feel anxious. I feel fearful and panicked and oh, so tangled up inside.

I feel weak.

So this is me admitting it to the world, to myself, and to God. And this is me asking for help, from God, and whoever is out there who can give me little glimmers of hope to hold onto. Because I know my story's not over yet... but it sure as heck feels like it is.

And I need something--no, I need Someone--to help me carry on.

Handling Life in the Midst of Chronic Illness

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. Even if she can’t feel my pain, at least she knows about it, and can help share the burden. It’s a beautiful thing, and honesty really does seem to be the best policy. It never fails to shock me how understanding and supportive people can be if I just tell them what I’m going through.

So here’s a question or two for you: how do you do your best to enjoy life amidst the pain? Have you found that being honest about your pain or symptoms has yielded good results?