Friday, September 25, 2009

Princess Caroline Marches On

it has been a pretty rough week here in the kulinski household. i have spent 4+ hours a day for the past 5 days at shepherd center receiving my ivig infusion which is our plan b attempt at ending this relapse. you usually don't see results until 5-7 days after the infusion ends, so next week will hopefully make up for this horrible week with some improvement in my symptoms. i have continued getting worse this week and it is rather scary and highly frustrating.

you may have noticed my sudden disregard for capital letters? in addition to the lower half of my body staging a coup, my left hand joined the dark side this week as well. typing on a keyboard, playing piano, and attempting to hold anything with my left hand has become nearly impossible. i still have some control over my thumb and pointer finger. the other three are living on some alien planet and refuse to do anything i tell them. talk about twilight zone! imagine if you will, writing an email and suddenly your left pinkie simply will not hit that shift key. no matter what you do, it rudely ignores you. so until further notice you may notice this absence of caps. it is going to make this semster at school rather interesting if this continues. i am a touch typer. i type well and quickly. ahem, i used to touch type. when your left hand is completely numb and 3 out of 10 finger aren't working, it severely diminishes your typing speed. i may have to start dictating emails, blog posts and schoolwork to someone willing to type for me!

don't even talk to me about how upset i am over not being able to play piano right now. i have always run to my piano when i am happy, sad, angry or scared. not being able to play right now feels like someone just went ahead and choppeed my whole arm off. i just have to believe that this will get better and whatever this is, it isn't permanent.

in the midst of such an awful week, i had a lot of cheerleaders. i don't know how people survive things like this without cheerleaders and i am lucky to have so many. by the time the week ended, the shepherd nurses were saying i had "an entourage"!! many many thanks go out to the chauffeurs and visitors who helped me pass the time while hooked up to tubes: my friend bethany spent monday morning with me, chris spent all day tuesday with me, alice (and her adorable boys, louis & adam) drove me and took me to chickfila on wed, thursday my sister-in-law betsey spent all day with me, helped me by typing while i dictated a paper outline to her, drove me to lunch and stayed and watched a movie with me. my mom was with me all day today, brought me lunch and yummy treats and made the time fly by.

if the entourage wasn't enough, my phone rang endlessly off the hook with people calling to check in, offering to help, or just leave me a nice voicemail to brighten my day: thanks barbara, dad, sheryl, van, uncle jim, beth, angela, karen, grandmother, granddaddy & george. tiffany & steven brought over goodies and kimmy brought dinner and did all my laundry for me. (it is surprising hard to fold clothes when one hand isn't working!)

i am truly blessed to have so very many people who care about me. i don't know what i did to deserve them all.

also the nurses and staff at shepherd are so incredible to me. they take such good care of me and even find ways to add fun into an otherwise dreadful experience. on wednesday, they appointed me "princess caroline" for the day and gave me a tiara to wear. i was the only patient lucky enough to be in the infusion room every single day, so it earned me that royal title!

i am relieved this week is over. i am trying to remain hopeful for the week(s) to come. i just wanna get back to school, get back to some sense of normalcy, even if my body is feeling quite far from normal. i missed the majority of my classes this week. all my professors were 100% understanding but i hate missing so much school. not only for fear of getting behind, but because school has become another happy place. when i am on campus, evwn with greg, i am just another normal student trying to get an education. i love being there. it fills my soul with joy. and i need as much joy as i can get right now!

keep your fingers crossed, say a prayer, do a dance, say a chant...whatever you think might help this medicine to work and finally end this relapse-from-hell. october is one of my favorite months and i would prefer to enjoy it relapse-free and feeling better.

Monday, September 21, 2009


I have a new man in my life.

It is likely that in the coming days (weeks? months???) if you spend any time with me, you will meet this new person. We are quickly becoming inseparable.

His name is Greg and he is in this picture:

No, it's not Omar Epps, or Dr. Chase, or even Robert Sean Leonard. And sadly, it's not Dr. House either. See that awesome cane with FLAMES on it? That's Greg. I have named him Greg because 1) I name pretty much all inanimate objects; and 2) because Dr. House's first name is Greg.

So Friday was a big day in Greg's life. He made his debut at Oglethorpe University. I had no idea what would happen, what people would do or say. Would they stare? Would they look away too quickly? Would they notice or not notice? Would I have to answer a bunch of questions and tell person after person, "I have MS." It's also a pride issue. I am former dancer that used to have a gorgeous triple pirouette and, at present, I require the use of a cane to walk to my classes without falling directly on my face. Not knowing what to expect from my fellow students and professors just adds to the potential humiliation. But here are the day's highlights:

8:45 a.m.: Arrive at school, park car. Greg and I walk slowly and carefully to the building. I realize that between holding my bag, my cup of tea and Greg holding me, I am left with no free hands to open the door. A young man comes up and opens the door for me. As he follows me up the stairs he says, "Nice cane. I like the flames." Score one for Greg.

8:50 a.m.: Arrive in my French 201 classroom. My French professor has recently been informed by me, via email, that I have MS and am currently fighting the Relapse From Hell. (And I will preface this by saying that this professor and I get along really well AND we are both extremely sarcastic!) As I enter the classroom, he sees me and starts nodding his head in approval and says, "Whassup, Cripple!" Now, I hope no one finds this too offensive, but the "cripple" found it utterly hysterical...then again both our senses of humor are a bit twisted. He, too, comments on my cane and says it is "bad-ass." Score two for Greg.

9:55 a.m.: Two more young male students pass me in the hall and say, "Nice cane. Like Dr. House," and "Sweet cane." A student who was in a class with me last semester sees me and runs over to see if I am "okay." I have to tell her I have MS, that it isn't playing nice and that if I have to use a cane that it "had better be a badass one." She responds, "Caroline, you're so awesome." Score three, four and five for Greg.

10:50 a.m.: Drive to building for next class, get the good handicap parking spot. I get close to the classroom door. A group of students is somewhat near my classroom. One of the students notices me, he stops his conversation, and without saying anything to me, politely walks over and opens my classroom door for me (I realize there is a chance he thought I was a teacher....a disabled teacher at that, and so opened he door for me out of fear/respect!); however, perhaps he just realized it would be a nice thing to do. Six points for Greg!

While all these little things might not seem like much, for a woman who prides herself on being independent and never imagined herself needing help walking at age 30, these small gestures meant the world to me. Every compliment made me feel safe and accepted when I needed it most. It was a day filled with extreme physical and emotional pain, not to mention feeling defeated and insecure and all these people at OU (most of them strangers!) made me feel that I wasn't a freak or disabled or defeated, but that I was just a girl with a kickass-looking cane.

PS - Starting an IVIG infusion today in hopes that it might get this horrible relapse under control. Will be hooked up to tubes 4 hours a day for 5 days - aren't you jealous? Haha. Cross your fingers that this works...because if it doesn't, I am going to have to start investing in more canes. And let's face it, they are really a kind of accessory, and you know I can't have canes that don't go with all my outfits!!