Vulcans and Valium

My legs and feet cramp up all the time. It’s no surprise to anyone at this point if my feevulcant decide to give the vulcan symbol for “Live Long and Prosper,” separating in the middle of my outstretched foot. My toes go off in their own directions, shaking and spasming at will, each deciding that they now want to turn me into a ballerina with perfectly pointed feet, though unable to decide which way is up.

My calves begin to cramp, ending in a ‘charlie-horse,’ during which I can physically feel the knot formed in my muscle. It feels awesome. NOT. I’ve previously posted that standing on ice helps immensely when trying to fend off the cramping. When it starts, I go stand on ice and 10 minutes later, the cramping goes away. So a few nights ago, at around 3 am, I got to put this theory to the test again. And again, it worked! I woke up to my calves trying to flip themselves inside-out, got out of bed, put on a coat and walked outside barefoot. My porch was covered in snow and ice, and it was about 4 degrees outside. I stood there for a few minutes until the cramping stopped (either that, or I got frostbite. It was 3 am- I couldn’t tell!), then came back into my room, hung up my coat and fell asleep again. And all I had to do was walk outside! (A definite perk of living in the snow-covered Northeast right now!)

Unfortunately, though, this didn’t work for me last night. I was sitting in my room, minding my own business, when this happened:

All of that is leg cramps from my hips down through my toes. Talk about painful! I was actually laughing through tears on the phone to my parents, saying “I’m totally gonna write about this tomorrow!”

Long story short, after talking to the on-call neurologist at Columbia in NYC, I went to the ER to see if they could do anything to stop the cramping. I know some of you are thinking- “just eat a banana!” or “take a muscle relaxant and take a hot bath!” If ONE more person tells me to up my potassium by eating bananas, I’m going to have a cow. After the bloodwork done last night, my potassium, magnesium, sodium, etc. levels were all totally fine. And for Potsies, muscle relaxants and hot baths are some of the WORST things we could do to ourselves, since both will lower your blood pressure. Lowering blood pressure= lowering our ability to remain upright due to symptoms including diziness, light-headedness, and general ickyness that nobody enjoys.

So anyway- my cousin, Linda, took me to the ER up here near college, after over an hour of leg-cramping fun. She stayed with me for a few hours while I got blood taken to check all sorts of levels, an intramuscular shot of Valium, a liter of IV saline to make sure the Valium wouldn’t make me potsie, then aIMG_2671nother Valium pill, since the first dose didn’t completely stop the cramping. Neither did the second dose, but it made me sleepy enough that by the time I got home, I went straight to sleep. She was laughing at me a bunch, since when we pulled up to the ER doors, I began to get out of the car, saying, “Thank you so much for driving me!” To which she replied, “As if I’m not gonna stay with you??”

I was really glad she did stay, since it was great to have someone to talk to, between the doctor, and my nurse, John, who was totally awesome. He was a realist in telling me that the only ways to get rid of pain are to a- fix the problem, or to b- give drugs to make you not care that the pain is there. He made a very good point. We certainly weren’t fixing any problems last night, but drugs are nice, I guess.

Long story short, I really enjoy Valium. It’s not that it did too much to get me “high,” or whatever, but it made the cramping stop almost completely, and it certainly made me not care about all the pain in my legs. It actually made me feel kind of light-headed and dizzy. I’m sure this must be what getting high feels like, though to me, it just felt like I was Potsie, which couldn’t be the case since I was hooked up to saline… Either way, look at that smile! Linda took this pic as I was talking to my mom about what was going on at the hospital.

Today I’m just super sore. Everything hurts- both my legs from my muscles trying to rip themselves apart, my left arm from the IV, and my right shoulder from the shot of drugs. I’m also pretty darn potsie again, and I’m using my super-cool pimp cane, since my legs don’t want to support me while walking over the snow. (see The Baby Giraffe.)

Anywho- Not to complain, just felt like sharing my night with y’all, since I haven’t written too much lately. Gotta get back to it somehow, and what better way than to share a traumatic story?

As always, If there’s anything in here so far that you can identify with, keep reading as I post. If you can’t relate, but want to read more about my journey as I carry on, keep reading. If not, then I hope you learned something about POTS.

Please message me!-

To all my fellow Potsies, good luck out there!

The Baby Giraffe.

When someone thinks of chronic illness, they think of the physical stuff of being sick, right? Like having no sense of balance and totally failing at yoga and most forms of dancing, or always carrying my giant Nalgene water bottle with me, full of some unidentifiable substance that usually tastes10481066_934942063189596_3020944253601202054_n like Alka Seltzer. They might even think of me with my pimp cane… yes, a pimp cane.  It’s blue and silver patterned and is super duper cute, you know- if you’re into the whole 21 year old, old lady thing….

The funny thing is- as much as the physical stuff is completely apparent a lot of the time and everyone is always amazed at how “strong you are,” and how “you’ve come so far,” nobody really thinks about how hard it is to be “strong” and to “come so far.” So even though I don’t use my pimp cane too often anymore, I can work out again, and generally am doing a lot better than just a few months ago by any standard, I’m still exhausted. It takes up a lot of energy to peel myself out of bed every day, drinking fluids out of the water bottle strategically placed on the floor next to me the night before, from the minute I wake up. It takes a lot of effort to work out through being dizzy with a heart rate that just will NOT come down below 190, when I’m just trying to go for a slow jog around the track at my gym like a normal person, then go back to class and have to participate in discussion about a book that I really couldn’t care less about, while chugging fizzy drinky stuff so I don’t see stars.

Above all, right now, it takes a lot of focus to walk through the snow.

No, seriously- walking through the snow is really hard! Up here at school in western NY, we’ve got snow just like the rest of the Northeast at this point. The ground is uneven and invisible, which makes walking across campus an adventure for the most coordinated of people. (I saw some girl slip and fall right on her butt today… not gonna lie, I may have giggled a bit. After she got up, of course.) Now stick someone who is constantly ‘potsie’ in the snow…

I’m like a baby giraffe. A graceful baby giraffe. I should be my own one-woman show. A comedy act.

Funny as it is, whenever I get stressed or exasperated or frustrated about things as simple as walking through the snow or writing a paper for school, or even just being at school, I end up getting potsie. I get all the same symptoms as if I were having a POTS issue, though my vitals tend to be okay. It’s bizarre, but that’s what anxiety will do for ya. It’s a huge challenge because even if I don’t feel tense at all, my body might be trying to clue me into what I’m actually thinking and feeling (and repressing, in most instances).

I guess the point I’m trying to make is that the challenges of chronic illness, from my experience, are not only physical. The physical and mental aspects of life are so intertwined that it’s often extremely difficult to tell the difference between them. Yes, we may ‘come so far,’ but even that progress takes its toll, and I have found that it’s completely normal to push and push for months at a time to get better, then break down for a week. It’s incredible and incredibly frustrating at the same time….

I don’t mean to complain, merely to make it known that improvement is often more challenging than we, as potsie people, make it appear- it’s two steps forward, and one back. Sometimes two forward and three or four back, and it really sucks. But this is our reality, and it’s something I am still getting used to, even four years into my POTS adventure. I’m not sure that I’ll ever get to a point of really accepting that if I get even a little stressed, my body goes all wonky, but it’s just one more Potsie thing to handle, I guess!

As always, If there’s anything in here so far that you can identify with, keep reading as I post. If you can’t relate, but want to read more about my journey as I carry on, keep reading. If not, then I hope you learned something about POTS.

Please message me!-

To all my fellow Potsies, good luck out there!

IMG_2527PS- I know this is supIMG_2526er late, but shout out to Uncle Michael, Aunt Ro, and Giovanni! Potsie has proven to be a faithful companion. Here he is on his first day with me, then going out to buy food for my guinea pigs, Polka and Dot!