Monday, May 2, 2011

Results of the MRI

Hello Everyone,

I came back from Doctor and got the all clear. I have no new lesions and no enhancement of the scar tissue I do have. That means that I have nothing more or less to do, still stay on Rebif, take good care of myself, and get another MRI in six month. I also have to check up on my liver function, evidently Rebif can raise it and getting my gall bladder removed can raise it. I will be getting blood tests to moniter it. Overall I am happy that I have no more lesions but am really frustrated that I still have more doctors to visit and hospitals to go to. I am hoping for a reprieve over the summer, although at least I am living up to my name. Here’s to good health.

the little hospital bill

Saturday, April 30, 2011

Learning to Give

Hello again everyone. I am sorry that I haven’t been posting as much as I had expected at least. It’s been a hectic sort of semester. I have been feeling like crap for at least 4 to 5 months, half from starting the Rebif, part from the MS, and now part from gallstones. I had an ultrasound done (after having intense pain in my back and stomach and horrible acid reflux like symptoms) and will have to have surgery to remove my gall bladder. It’s not like I need it, but I’d rather keep all the organs God gave me. Needless to say I am not happy to find out that I need more doctors or that more hospital visits are in my future. 

I also got my MRI done on Friday, which thanks to a lot of medication was only slightly horrible. I will get results on Monday, and hopefully they will be all clear. I will have another post than with my reactions. I am holding up the best I can, but it is getting very frustrating to keep getting these, well illness. I am having a tough time getting my last weeks in the semester done while having to deal with all this. However, I found a great way to give my time to good causes and that is helping to lift my spirits. 

What if I told you one click of your mouse could donate rice to hungry people, food to homeless animals, save a rainforest, and give big cats a place to live? Is one click too much to give? No, that’s why I have started to donate my time to simply click on various charitable sites, which through the revenue gained from ads are able to donate to various charities.

Simply go to these sites and click for each charity, it’s quick, painless and really helps.

I will be posting my progress through these charities (and others that are slightly more involved) to see how much of a difference it really makes.

Sponsorship of a child: 8 cups of food
Giving Books to Children: 4 books
Rainforest saved: 55 sq. ft.
Big Cat Habitat: 33,000 sq. ft
Free Mammograms: 6
Homeless Pets: 7 cups of food
Veterans: 3 meals
Defense of Baby Seals: 3
Oceans Protected: 300 sq. ft.
Feeding Primates: 3
End Violence: 3
Wolf Habitat: 3
MS Research: .54 donated
Rice Donated: 2640 grains

Sunday, April 10, 2011

Day Zero Challenge

Hey Everyone,
Sorry it has been so long since I posted. I have been busy, but most of all I have been tired. I can’t seem to get past the tiredness. I am tired the day after my shot, the day of my shot, and every day of the week. Sleeping doesn’t help; it’s just a tired feeling that won’t go away. I am just working through it and resting while I can. The heat is also getting to me, it seems to make me more tired and cranky. 

Oh well. The achiness from the shots has definitely gone away, all I get is a small headache the day after. I am pretty happy today though, I am completing my final project for a ceramics class (a pile of books) and I had a wonderful day trip with my mom yesterday to Dickson Mounds. Even though it was slightly creepy (it is built on an Indian burial ground, and the bodies are still there) I had a ton of fun. This leads me to my next point, I decided to do the Day Zero challenge!

The Challenge:
Complete 101 preset tasks in a period of 1001 days.

The Criteria:
Tasks must be specific (ie. no ambiguity in the wording) with a result that is either measurable or clearly defined. Tasks must also be realistic and stretching (ie. represent some amount of work on your part).

Why 1001 Days?
Many people have created lists in the past - frequently simple challenges such as New Year's resolutions or a 'Bucket List'. The key to beating procrastination is to set a deadline that is realistic. 1001 Days (about 2.75 years) is a better period of time than a year, because it allows you several seasons to complete the tasks, which is better for organizing and timing some tasks such as overseas trips, study semesters, or outdoor activities.

Here is my list, feel free to start your own. It is really hard to get the last 55 or so, but I am hoping to complete this challenge. 

Friday January 3rd 2014

1.     Go to Europe
2.     Take a picture every day for a year
3.     Upgrade Computer
4.     Read 10 classics
5.     Start a new book each month
6.     Graduate with honors
7.     Start a Master’s program
8.     Learn to oil paint
9.     Learn the family traditions
10. Travel to at least 5 states

11. Live in Chicago
12. Relearn German
13. Do yoga regularly
14. Take a cruise
15. Return to Disney World
16. Visit Aunt Marcy
17. Be Episode Free
18. Rescue and animal from a shelter
19. Go Camping
20. Read the Bible

21. Learn to cook
22. Bake by weight
23. Start a novel
24. Go to a spa all day
25. Learn how to do my hair and makeup
26. Go on a road trip
27. Donate to the Heifer Project
28. Relax for a whole week
29. Make a library for all the books you have already read/ read all the books in your library
30. Plant a tree

31. Clean out my closet
32. Spend a whole day with God
33. Learn Guitar
34. Donate Christmas Gifts
35. Donate 100,000,000 grains of rice at
36. Take $14 out of each paycheck for 1001 days
37. Get a credit card
38. Pray everyday for a month
39. Eat at 5 new restaurants
40. Relearn swim strokes

41. Give yourself a treat over $100
42. Learn First Aid
43. Eat outside 10 times at a restaurant
44. Enjoy a cool drink on a hot day
45. Buy quality jewelry
46. Learn to face paint
47. Buy a truck
48. Make a difference in the community
49. Make homemade ice cream
50. Make your own tomato sauce

51. Learn to make a home made item
52. Find the perfect shade of your favorite color
53. Help someone who doesn’t need it
54. Learn etiquette
55. Eat at a really fancy restaurant in your best clothes
56. Go on 101 day trips
57. Try 3 new spices
58. Buy a whole new wardrobe
59. Travel to 3 other states
60. Invest in Disney Stock

61. Go through project box, do 3 projects
62. Learn to Dance
63. Eat something you don’t want to
64. Create are every day for a month
65. Lose 20 lbs
66. Reread all Harry Potter books
67. Watch all the Harry Potter movies
68. Can jam
69. Go to an orchard, pick some fruit
70. Drink an extra bottle of water everyday for two weeks

71. Take vitamins every day for a month
72. Plant a garden
73. Find a waterfall
74. Run for 30 minutes
75. Go to 10 Museums
76. Go to 3 state parks
77. Paint from the Bible
78. Stop and savor the seasons, take pictures
79. Have a tea party
80. Learn photography

81. Watch the sun rise
82. Get a juicer
83. Sit in a church and feel God
84. Draw 10 of the most important buildings on campus
85. Read all the fairy tales in German
86. Watch all the Disney classics
87. Scrapbook college
88. Name a star
89. Learn all the names and stories of five constellations
90. Spend one whole day outside

91. Send troops care packages
92. Write 5 poems
93. Create a self-portrait in any medium
94. Become at least a Jetsetter on Passporter
95. Do something that makes you turn into a little kid
96. Get at least 3 manicures and pedicures
97. Read War and Peace
98. Make a quilt
99. Make dishes from 3 other cultures
100. Go on 10 Picnics
101. Hand make a gift, just because

Friday, March 11, 2011

Doctor's Don't Always Know Best

Wow, it has been a long time since I last posted. I have been busy, mostly with school but more recently I have caught a bad cold. Yesterday I slept for roughly 20 hours, and let me tell you that left me exhausted.
I have been on the Rebif for about a month and a half, and I have to say it is finally getting easier. I feel less achey, less tired, and more normal each time I take my shot. It’s not perfect yet (I still feel tired, and I bruise like crazy) but I am definitely improving. It’s even getting slightly easier to take my shots, which is great since I hate shots a lot and it’s hard to do them.
It’s been pretty interesting telling people that I have MS, most people my age go “Oh, well that sucks. I had a neighbor that had that. Let me tell you about my break….” Anyone over 30 reacts much differently obviously, but my favorite was when I went to the doctor for my cold and told her. She was extremely interested and had no idea what Rebif was, so we spent the duration of my exam discussing my treatment. She told me that I would be much more equipped to tell my primary care doctor what’s going on than they will. I thought that was pretty funny, although doctors can’t be expected to know about every disease, it’s weird to know more about something than your doctor.
Other than that I have been pretty good, but I am still getting over a cold so that’s all for now!

Saturday, February 12, 2011

My Very Special Love Story

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 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

"They Didn't Have Whiteout with Typewriters"

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.