Saturday, February 12, 2011
I want to share with all of you a very special love story in honor of Valentine’s Day (I know I’m early, but I am feeling sick and need to rest for a while). This is a story I submitted onto glutenfreegirl.com and will hopefully be published there (if so I will provide a link). Go ahead and comment your own love story and we can all feel loved together.
I have a very simple love story, one that I knew all along but took on special meaning as I got older. I have had small medical issues all my life, but when I woke up one morning with numbness in my foot, hand, and stomach, I called my mom crying. She was two hours away and the first thing she said was, I will be there. Over the next two months, I went to doctor after doctor, week after week. For every doctor's appointment, every night in the hospital, every injection, test, anything that was done, my family and my boyfriend stood by me. They drove hundreds of miles and sacrificed hours of time over those months to hold my hand while I got steroid treatments, MRIs, spinal punctures, and finally the diagnosis of Multiple Sclerosis. I can never thank them enough, and I can never love them enough. They did so much for me, support me, and keep me positive. I can never express how much they mean to me, or how much I mean to them. This is for them.
Tuesday, February 8, 2011
Today has been an extremely frustrating day. Sometimes my fellow students astound me, most days I end up listening to conversations started with sentences like the above. History is the most important lesson you need to learn, if for nothing else than to not sound like an idiot. There I said it, let's move on.
I have been having hair loss for about a week or so now, could be from the Rebif could be from stress. I don’t know, but I am getting very tired of picking hair off of all my things. It is embarrassing and quite stressful, which does not help I am sure. I am still very tired, and a little sore after shots. I am switching my shots to Tuesday, Thursday, and Saturday, which will give me better days to be sick on. I am sure once all my symptoms go away I will switch back to injection free weekends.
So far I have told all my friends and family about my MS, but today was the first time I told people not obligated to love and support me, granted in a roundabout way. I read this essay aloud in class and I got basically nothing from anyone. I don’t know if they were too shocked to speak or just didn’t care. (One girl did come up to me and sympathize with me, which I really appreciate and I want to mention that she is a truly great person for doing so). It doesn’t make me mad that I got no response; it makes me very aware of social rules and customs.
You don’t talk about bad things in groups of people, no one else’s essay were about the really hard times in their lives (not to say there weren’t hardships, just glossed over hardships). It was, for the most part, fluffy interpretations of their lives, little things hinted at darker parts. One guy mentioned rage issues, one girl mentioned deep loneliness, and mentions of deep hard emotions we all live with were there, but not out in the open. It was almost as if all these papers were edited away, the real emotions hidden from sight because they would be ‘too much’. Well I feel a lot of things about my MS. I don’t want to hide any of these, there is a reason I have MS, there is a reason it hurts, and there is good within it. It doesn’t mean it doesn’t suck, because it does, but it does mean we don’t have to hide the emotions we feel, both for ourselves and for others. So here is my essay, maybe it will make you sad, maybe you will get angry (hopefully not at me), but most of all I want people to know this isn’t how I always feel, but it is feelings I experienced, will experience, and want to embrace.
(Disclaimer: Not all of this is fully remembered, it is creative non-fiction!)
Shots of Life
Like any other child I was given several shots at birth, followed by even more through the wonderful immunization schedules provided by the CDC. My parents strictly followed these guidelines, getting each of their four children their shots right on time. My eldest sister, my brother, my younger sister; all of us were toted down to the Medical Group for our yearly shots. I learned early on to hate these drives.
Trees pass, waving merrily in the wind. Cars whiz by; their colors entrance me. I take it all in strapped into my booster seat, my sister next to me still in her car seat. She’s so young, but her birthday is coming up, and then she will be in a booster seat too. I make a face at her, and she sticks out her tongue. Well now I have to yell out. Mom gets mad at the noise we are making. Other kids are coming out of the building crying. My sister starts to cry; not to be outdone, so do I. We all walk into the waiting room, our tears stopping at the site of toys. A stranger in white calls my name. My mom picks me up, and we all sit in a tiny room. The lady holds my arm and rubs cold into it. I squirm, and they reassure me it won’t hurt. Before I can ask what won’t hurt, I begin to scream. A sharp pain in my arm causes me to jerk away, but the lady holds firm until she takes out the needle. I start to sob and my mom holds me tighter. The nurse promised me a lollipop if I calm down. I scream louder in protest.
By the time I was old enough to recognize street signs, I knew exactly where we were going. No amount of lying could convince me otherwise. My mother sympathized with me, but she knew this was important and so…
Every other year we went, taking the drive down the scenic, tree-lined road, our van rocking gently along the curves. I hated that drive. I would beg to be left behind, offering all sorts of promises to get out of it. I swear I won’t step on a rusty nail. I’ll wear shoes! I won’t get polio! Who even gets polio? Who has been in the DARE program for four years? No used needles for me! None of these arguments worked however, and we still made that drive. Four days later, I was sure that if I had just stressed more that I would never go near a rusty nail, I could have gotten out of it. Lying on the living room floor, my arm throbbed under its ice pack, the tetanus vaccine winning against my poor immune system. Like it or not I was not going to get tetanus. The sun shone through the bay window, warming me as my thoughts wandered.
By the time I was in college, I believed my needle days were over. Now I was free. Finally, I could forget the smell of alcohol wipes, the pinch of the needle, and the reassurances that it won’t hurt. Two years passed. My junior year I found out that pretending something doesn’t exist usually ends with more pain than confronting it.
The needles sit innocently in the jar. Their sharp mouths capped tightly, the liquid gone from their bodies, their use past. Another needle sits in my hand, its belly full of medicine; painful, but necessary. Gently, I push the needle into its transport; the injector focuses its hungry gaze onto my flesh, while hiding it from my sight. A quick breath, readjustment, and the needle feasts, injecting its life-saving poison. Carefully, I remove the injector, opening it to take out the sated needle. I again hide the needle with the cap, one of three a week I use, placing it within the glass jar. I have been told to take the injections until a cure is found, hopefully within my lifetime. If not, well, they say you get used to it. The site burns, the medicine slowly dispersing. After two hours, I can hardly even feel the site anymore. I am able to go to class and pretend there isn’t a jar of needles waiting for me at home, that there isn’t a standing shipment once a month, that I don’t have hospital bills piling in my apartment. I can pretend that jar is empty, even full of jam or maybe coins, anything except needles. I can pretend I am not counting down the hours until my next shot, or that despite my eight hours of sleep each night, I am only tired because all college students stay up late. I can pretend, until I step into my room and see that jar of needles.
Thursday, February 3, 2011
Now that the snow is only 2 inches around the doors and windows, I figured it was time to crawl out of my warm bed and start another entry. I have been having the same side effects, the only new thing to report is I am having some slight hair loss, could be due to stress, could be the Rebif. I have started the next level at 22, and so far I can feel it. I am more tired and honestly just want to sleep for the rest of winter (that would take care of me being cold and my tiredness). I have however gotten some great winter pictures (if I am forced to go to class, I may as well have some pictures to prove it).
I have also been eating a lot more fruit, like fruit salads ALL the time. I have found that I feel a lot better after eating fruit, it helps to keep me awake. It does not help with the nausea, but I have Sprite for that. I have also been keeping just at my points total each day, and I have noticed definite weight loss! This has been very exciting, especially since I still bake like I love to do. Speaking of which here is an awesome recipe.
No name, just delicious
This is a mixture of cookie and brownie that forms a cupcake of awesome. To make simply mix together a batch of brownie and cookie dough (here I used Betty Crocker GF mixes)
To make the best brownie and cookie dough, melt the butter and mix (slowly) into the mixture. Than put your dough into the refrigerator overnight (or at least four hours), also at least double the amount of vanilla!