Sorry everyone, I moved. For a long time it would not let anyone comment on here so I started blogging at calliehansen.wordpress.com I hope you still choose to follow me over there.
Believe in a Cure! :)
Thursday, January 6, 2011
Wednesday, April 28, 2010
Thou art Elijah!
Sorry I have been so busy with the end of school, I haven't had a chance to blog. Last week was a HUGE week. I had 3 hour night rehearsals for a concert, a Spanish test, a research paper due, a huge portfolio due online, I taught at a middle school for the first time, and piano quizzes, all while keeping regular classes up and practicing for up coming juries.
About two weeks ago I got a bite on my arm and thought it was a spider bite. When I started getting really tired and achy I didn't know if it was a Fibro flare because I was so busy or the bite, so I went to the doctor on Wednesday and she put me on a Z-pack in case it was a tick bite to prevent Lyme's disease. (I admit, that freaked me out, my mom had a tick bite and got Lyme's disease which triggered her Lupus). Anyways by Sunday after our huge Elijah concert I started getting really sick while in the middle of my Z-Pack (for those of you who don't know, a Z-Pack is a really big dose of anti-biotic, it's suppose to kill almost any bacteria). Me, being me, and my immune system being the wonderful mechanism it is, managed to get sick with a bacterial infection while on a Z-Pack. So when I went to my doctor today for what was suppose to be a simple fibro follow up, she was really surprised and honestly didn't know how I could hear with all the fluid behind my ear drums. (I can't really). So now I'm taking the highest dose of penicillin I can handle and hope it clears up before finals and vocal juries.
Tomorrow I have to give a presentation of my Music and Culture research paper. I wrote my paper over Estonia: The Singing Revolution. I went to Estonia on a mission trip after my senior year, summer of 2008. While we were there they showed us the documentary The Singing Revolution, and it hit home. Being so involved with music and knowing the power it has, I never could have imagined standing up to iconic leaders such as Hitler and Stalin and fight for your freedom through song! I love the message, and the bravery of the Estonian people. It is such an amazing story and I love telling anyone who will listen. It was very difficult to condense my paper to five minutes, that's including my song sample to play. We'll see how to presentation actually goes tomorrow.
So, I have some pretty exciting news, but I'm not exactly sure I can put it on here yet. I'll know soon enough, and if all works out, I'll tell you in a few weeks. But, it's awesome, so get pumped!
About two weeks ago I got a bite on my arm and thought it was a spider bite. When I started getting really tired and achy I didn't know if it was a Fibro flare because I was so busy or the bite, so I went to the doctor on Wednesday and she put me on a Z-pack in case it was a tick bite to prevent Lyme's disease. (I admit, that freaked me out, my mom had a tick bite and got Lyme's disease which triggered her Lupus). Anyways by Sunday after our huge Elijah concert I started getting really sick while in the middle of my Z-Pack (for those of you who don't know, a Z-Pack is a really big dose of anti-biotic, it's suppose to kill almost any bacteria). Me, being me, and my immune system being the wonderful mechanism it is, managed to get sick with a bacterial infection while on a Z-Pack. So when I went to my doctor today for what was suppose to be a simple fibro follow up, she was really surprised and honestly didn't know how I could hear with all the fluid behind my ear drums. (I can't really). So now I'm taking the highest dose of penicillin I can handle and hope it clears up before finals and vocal juries.
Tomorrow I have to give a presentation of my Music and Culture research paper. I wrote my paper over Estonia: The Singing Revolution. I went to Estonia on a mission trip after my senior year, summer of 2008. While we were there they showed us the documentary The Singing Revolution, and it hit home. Being so involved with music and knowing the power it has, I never could have imagined standing up to iconic leaders such as Hitler and Stalin and fight for your freedom through song! I love the message, and the bravery of the Estonian people. It is such an amazing story and I love telling anyone who will listen. It was very difficult to condense my paper to five minutes, that's including my song sample to play. We'll see how to presentation actually goes tomorrow.
So, I have some pretty exciting news, but I'm not exactly sure I can put it on here yet. I'll know soon enough, and if all works out, I'll tell you in a few weeks. But, it's awesome, so get pumped!
Tuesday, April 20, 2010
30 Things about my invisible illness
1. The illness I live with is: Fibromyalgia
2. I was diagnosed with it in the year: April 2009
3. But I had symptoms since: It really hit September 08, but some symptoms I'm starting to think I've had my whole life.
4. The biggest adjustment I’ve had to make is: My entire lifestyle. Us "sick" people all say this, but "healthy" people have a hard time of grasping that. Pace yourself is all you here, but do you understand what that means. I can't go hang out with you because if I'm not in bed by 10 I can't wake up in the morning. I can't walk back to my dorm for a nap because it would take me an hour just to walk there and back and I wouldn't be able to get back up. When I'm done walking from class to class at the end of the day, I can barely walk. That is pacing yourself. Knowing what you have to get done and when you're out of energy, there is no "just one more thing". You can't move.
5. Most people assume: I'm healthy. I'm a generally happy person, and I am only 19. They assume when I say "I'm sick" that it's just a cold and I'll be fine in a few days. They don't understand that I mean I can barely stand, I'm chronically nauseous, and I won't be fine for weeks, months, or years.
6. The hardest part about mornings are: Getting up. Convincing myself I want to get out of bed, and that the day is worth fighting through this pain.
7. My favorite medical TV show is: Scrubs
8. A gadget I couldn’t live without is: My phone. It has my google calendar which with my brain, I could not live without. Now I also have the internet, which is great for looking stuff up because again, my brain isn't the same as a year ago.
9. The hardest part about nights are: going to sleep. Trying to get relaxed enough to fall asleep is hard when every joint is screaming and no position is comfortable for all your joints at once.
10. Each day I take: Only my thyroid medicine. I have tried all forms of anti-depressants to treat fibro, as well as sleep medicine, anti-inflammatories, pain medicine, and ended up with narcotics when I can't stand the pain and need to dull it a little.
11. Regarding alternative (Holistic) treatments I: Eat healthier, medicinal messages from my wonderful fiance, and talking with others such as a support group.
12. If I had to choose between an invisible illness or visible I would choose: I wouldn't say either, they both suck for very different reasons.
13. Regarding working and career: I am a full time Music Education Major. And if you've ever talked to an Music Ed major, you would know that this means double the amount of work and hours than what it sounds like. I also intern at my church. I plan on being an Elementary Music teacher, and can't wait to get started. I know this will be hard, and my body screams at me everyday, but at some point you have to do what you love, and for me, music is healing.
14. People would be surprised to know: How sick I really am.
15. The hardest thing to accept about my new reality has been: I am a person who, if I start something, I have to finish it. This isn't the best on my new body so I'm still toeing the line of pacing.
16. Something I never thought I could do with my illness that I did was: Help start an advocate and support group at OU.
17. The commercials about my illness: are just now starting to come out and they are mainly for the elderly.
18. Something I really miss doing since I was diagnosed is: staying up all night with friends.
19. It was really hard to have to give up: Riding horses
20. A new hobby I have taken up since my diagnosis is: making jewelry. (thanks mom :D!)
21. If I could have one day of feeling normal again I would: Do something active, for a brief while after they fixed my thyroid and before my knee got bad, I loved to run!
22. My illness has taught me: We all have different parts of our life. Our lives changes for many reasons and we have to learn to adapt and find new passions for each stage.
23. Want to know a secret? One thing people say that gets under my skin is: "You just have to bear through it." "Just get out of bed despite the pain." "Just exercise and it will all be better." You have no idea, don't make it sound like it's easy and I'm just being a whimp. Also, I can barely walk when I'm done with classes as is, I walk over 2 miles a day between classes, if I were to do *extra* exercise (apparently only exercise outside of daily life counts, you have to go to a gym for it to be real) I wouldn't be able to get out of bed the next day.
24. But I love it when people: Ask me questions and really try to understand what I'm going through. I don't want to be seen as "sick Callie" I want to be "Callie who is amazing despite being sick"
25. My favorite quote that gets me through tough times is: "I hereby Command you: be strong and courageous; do not be frightened or dismayed, for the Lord your God is with you where ever you go." Joshua 1:9. I found this when I was about to leave for college, but it always pops back up in my head for any circumstance.
26. When someone is diagnosed I’d like to tell them: Please no you are not alone! Find a support group, inform your friends and family, and don't be afraid to ask questions or for help.
27. Something that has surprised me about living with an illness is: all the little things we take for granted. Even as basic as walking. I do not have a cane, but I'd might as well with how much I use Alex. I feel bad sometimes, even if he doesn't mind. We no longer hold hands when we walk. I need help walking so he offers me his arm and helps me walk like we were from the fifties. It might seem old-school and cute, but it's not cute when it's a necessity to walk.
28. The nicest thing someone did for me when I wasn’t feeling well was: tell me they understand and not to worry about it. I always hate canceling things, and when you tell me you understand, it makes it more bearable.
29. I’m involved with Invisible Illness Awareness because: Everyone is deserving to be heard, and even if we're to sick to picket, and hold rallies, and stir revolutions, we still need to be heard and this is a small way to give those of us to sick to advocate a chance to do just that.
30. The fact that you read this list makes me feel: loved, honored, and heard. Thank you!
2. I was diagnosed with it in the year: April 2009
3. But I had symptoms since: It really hit September 08, but some symptoms I'm starting to think I've had my whole life.
4. The biggest adjustment I’ve had to make is: My entire lifestyle. Us "sick" people all say this, but "healthy" people have a hard time of grasping that. Pace yourself is all you here, but do you understand what that means. I can't go hang out with you because if I'm not in bed by 10 I can't wake up in the morning. I can't walk back to my dorm for a nap because it would take me an hour just to walk there and back and I wouldn't be able to get back up. When I'm done walking from class to class at the end of the day, I can barely walk. That is pacing yourself. Knowing what you have to get done and when you're out of energy, there is no "just one more thing". You can't move.
5. Most people assume: I'm healthy. I'm a generally happy person, and I am only 19. They assume when I say "I'm sick" that it's just a cold and I'll be fine in a few days. They don't understand that I mean I can barely stand, I'm chronically nauseous, and I won't be fine for weeks, months, or years.
6. The hardest part about mornings are: Getting up. Convincing myself I want to get out of bed, and that the day is worth fighting through this pain.
7. My favorite medical TV show is: Scrubs
8. A gadget I couldn’t live without is: My phone. It has my google calendar which with my brain, I could not live without. Now I also have the internet, which is great for looking stuff up because again, my brain isn't the same as a year ago.
9. The hardest part about nights are: going to sleep. Trying to get relaxed enough to fall asleep is hard when every joint is screaming and no position is comfortable for all your joints at once.
10. Each day I take: Only my thyroid medicine. I have tried all forms of anti-depressants to treat fibro, as well as sleep medicine, anti-inflammatories, pain medicine, and ended up with narcotics when I can't stand the pain and need to dull it a little.
11. Regarding alternative (Holistic) treatments I: Eat healthier, medicinal messages from my wonderful fiance, and talking with others such as a support group.
12. If I had to choose between an invisible illness or visible I would choose: I wouldn't say either, they both suck for very different reasons.
13. Regarding working and career: I am a full time Music Education Major. And if you've ever talked to an Music Ed major, you would know that this means double the amount of work and hours than what it sounds like. I also intern at my church. I plan on being an Elementary Music teacher, and can't wait to get started. I know this will be hard, and my body screams at me everyday, but at some point you have to do what you love, and for me, music is healing.
14. People would be surprised to know: How sick I really am.
15. The hardest thing to accept about my new reality has been: I am a person who, if I start something, I have to finish it. This isn't the best on my new body so I'm still toeing the line of pacing.
16. Something I never thought I could do with my illness that I did was: Help start an advocate and support group at OU.
17. The commercials about my illness: are just now starting to come out and they are mainly for the elderly.
18. Something I really miss doing since I was diagnosed is: staying up all night with friends.
19. It was really hard to have to give up: Riding horses
20. A new hobby I have taken up since my diagnosis is: making jewelry. (thanks mom :D!)
21. If I could have one day of feeling normal again I would: Do something active, for a brief while after they fixed my thyroid and before my knee got bad, I loved to run!
22. My illness has taught me: We all have different parts of our life. Our lives changes for many reasons and we have to learn to adapt and find new passions for each stage.
23. Want to know a secret? One thing people say that gets under my skin is: "You just have to bear through it." "Just get out of bed despite the pain." "Just exercise and it will all be better." You have no idea, don't make it sound like it's easy and I'm just being a whimp. Also, I can barely walk when I'm done with classes as is, I walk over 2 miles a day between classes, if I were to do *extra* exercise (apparently only exercise outside of daily life counts, you have to go to a gym for it to be real) I wouldn't be able to get out of bed the next day.
24. But I love it when people: Ask me questions and really try to understand what I'm going through. I don't want to be seen as "sick Callie" I want to be "Callie who is amazing despite being sick"
25. My favorite quote that gets me through tough times is: "I hereby Command you: be strong and courageous; do not be frightened or dismayed, for the Lord your God is with you where ever you go." Joshua 1:9. I found this when I was about to leave for college, but it always pops back up in my head for any circumstance.
26. When someone is diagnosed I’d like to tell them: Please no you are not alone! Find a support group, inform your friends and family, and don't be afraid to ask questions or for help.
27. Something that has surprised me about living with an illness is: all the little things we take for granted. Even as basic as walking. I do not have a cane, but I'd might as well with how much I use Alex. I feel bad sometimes, even if he doesn't mind. We no longer hold hands when we walk. I need help walking so he offers me his arm and helps me walk like we were from the fifties. It might seem old-school and cute, but it's not cute when it's a necessity to walk.
28. The nicest thing someone did for me when I wasn’t feeling well was: tell me they understand and not to worry about it. I always hate canceling things, and when you tell me you understand, it makes it more bearable.
29. I’m involved with Invisible Illness Awareness because: Everyone is deserving to be heard, and even if we're to sick to picket, and hold rallies, and stir revolutions, we still need to be heard and this is a small way to give those of us to sick to advocate a chance to do just that.
30. The fact that you read this list makes me feel: loved, honored, and heard. Thank you!
Monday, April 12, 2010
More to come
This weekend I went home to spend some time with my family. Alex had a concert so I made the boring two hour drive both ways by myself. I did blast music and probably tear up my vocal chords in ways my voice teacher would not approve of, but there is just something about singing incorrectly to musical theater style toons that pull at my heart strings. I had a packed weekend of shopping and jewelry making. When I got home my mother and I went all over hobby lobby and walmart looking for stuff to decorate advocate tables to take to the state capital, and we just happen to end up in the jewelry isle as always. When I was really little we use to make bracelets on looms with tiny beads, but I haven't done much since then. My mother is the creative one. Both my parents are creative, my dad is an architect and my mom used to own her own stain glass shop. Although my dad can design things he lives through mathematics and structure, while my mom is the think out of the box creater which I have grown to love! This weekend I actually really got into it. She forced me to do my first necklace and I changed my mind a hundred times, but when I finished, I loved it. Since then I have made a bookmark for the future MIL for her bible, her a pair of earrings (can't rack up enough brownie points when it comes to MIL's), several rings made out of music, some necklaces, and a lovely necklace if I do say so myself for my elephant (best friend). After a great weekend I ran home and frantically tried to complete my homework. I stayed up late, and still have some stuff to do, but it was so worth it! I will take pictures of everything and post it up here soon.
Wednesday, April 7, 2010
Bite my tongue!
I always speak to soon! This morning it took me FOREVER to get out of bed. I was so tired. I think I rolled out around 8:15... My class starts at 8:30. I was not late however! As Alex put it "aww, you just look so comfortable under the warm down comforter". That didn't help me to convince myself to get up. It truly is a daily battle. Even though you want to get up, you want to live a life, you want to be normal, by golly that bed screams your name so loud! I have a voice in my head, he's far in the back, a little guy, but a huge pain in the... tooshie. He says in a meek voice, "But, you're so tired. Just a little longer. Just close your eyes and forget about everything. They wont mind. You need your sleep or you'll get sick. You don't really need to go to class today, there are no tests and you can make up the material." Trust me, this is exactly what is in my head! Till finally one of the other voices realizes the falsities, grabs their big girl panties, and duck tapes the first ones mouth shut. True story. Haha, not to sound more crazy, but since this morning all the little people in my head are in the corner, in the fetal position, mumbling "only two more days, two more days, two more days". I'm so glad I don't have anything this weekend. Alex has a concert I will go to, but that's not till after church so I'll be up anyways.... hopefully.
Other than that I've been feeling ok. I don't feel sick *knocks on wood*. I did however forget how much aches and pains I have. I still think I prefer it over being sick.
I hope you all are having wonderful pain free/sick free days.
Other than that I've been feeling ok. I don't feel sick *knocks on wood*. I did however forget how much aches and pains I have. I still think I prefer it over being sick.
I hope you all are having wonderful pain free/sick free days.
Tuesday, April 6, 2010
Falling in Place
I am actually starting to feel better... I still hurt, but usually I'm so sick and tired I don't notice. And as backwards as it sounds, feeling the pain is preferable, because at least for now I can still get out of bed. I'd much rather pull through pain than be exhausted, nauseous, and sick.
Lately things have just been falling into place. I have gotten a lot accomplished. I applied for a summer internship, I am applying for a counselor internship this summer also, we have the funds for Austria lined up, we have a prospect of going to Jamaica over Christmas break, and I if I get those internships all those funds will be lined up, I have been keeping up with my classes, CIAA is going to have a booth this Thursday at a campus event, raising funds for Lupus, I have been sticking to the nutritionist, and... I FEEL OK! I'm super excited for everything that is taking place, and I hope it all works out.
Lately things have just been falling into place. I have gotten a lot accomplished. I applied for a summer internship, I am applying for a counselor internship this summer also, we have the funds for Austria lined up, we have a prospect of going to Jamaica over Christmas break, and I if I get those internships all those funds will be lined up, I have been keeping up with my classes, CIAA is going to have a booth this Thursday at a campus event, raising funds for Lupus, I have been sticking to the nutritionist, and... I FEEL OK! I'm super excited for everything that is taking place, and I hope it all works out.
Friday, April 2, 2010
My tap in the face
So I posted two posts ago that I guess I was waiting for something to slap me in the face. This might not be a slap, but it is a tap! I've been following the nutritionists advice, tracking my food to see if I'm getting enough veggies, fruits, things like that. I also have simply written at the top of each day P(pain)-__ N(nausea)-__ F(fatigue)-__ M(memory/mind)-__ and I simply put a number from 1-10 everyday to track my main symptoms. I also keep side notes of special things. *foot hurts, feels like arthritic pain *hand went numb *I feel slightly normal, things like this. I think this has really helped me remember what the day was like, it will help my doctors track my symptoms, and I won't come up blank when they ask me at my 15 minute doctor appointment. I am very pleased with how this is working. Also, on my handy dandy Google calender I have added water aerobics on Monday, Tuesday, and Wednesday 5pm-6pm and I start it this coming Monday! We'll see how that goes. I'm trying to get people to join me, but most of the people I talk to are boys, and they aren't interested in water aerobic, I don't know why.
These past few days have been really hot. Up in the 80's. Last night I harnessed my energy into shaving my legs! This might be a TMI but this is a legitimate thing to blog about. I can't really shave my legs in my shower because I don't have anywhere to prop up my leg to reach it, unless I want to use the handicap rail that is up at my waist. Some days I just can't stand in the shower that long. I do have a chair in my shower (I'm in an ADA room on campus) but it is metal, and with the cold, all tile room it's not fun to use. So last night with some shorts and fully dressed I sat on the bench and shaved my legs. All this was so I could wear a dress today. I've always loved shorts and dresses. I hated jeans until I was in 9th grade. I hated shoes and socks too, but that's another story my mom can tell. I have a spring dress I found on sale for $3 dollars at rue 21 two years ago. I love this dress. It's very spring fitting, white with green and blue flowers. I wake up this morning to put on my spring dress for the celebration of spring and Easter. I walk outside... and it's 50 degrees and will storm all day. Story of my life. Despite the rain hurting my joints and my back, and my legs freezing when I walk from class to class, I feel this dress has improved my mood. I feel a slight spring in my step, no really, I jumped over a puddle! I landed on my "bad knee" and it didn't hurt. Little things like this seem amazing now. I truly have learned to enjoy the small things in life. I hope that all my friends, family, and loved ones can see the joy in the small things without them being taken away from them. I know the quote is you don't know what you had till you lost it, but I think you can know what you have, you just have to be reminded. So here it is, SMACK, remember you are blessed, you have a million small things happen that are miracles everyday. Notice these, there are plenty of them to out weigh the bad in our lives if we focus on them!
Rereading my post I know this dress has improved my mood. Even though I'm stressed about life right now, I will find the good. After all, most of what we go through we can't change so why dwell? I think I will treat myself to some shopping soon. I rarely go anymore. I will get me some new spring (teacher appropriate) clothes that help put that spring in my step everyday. Who knows maybe it will encourage me to wake up earlier than 15 minutes before my class and have time to put on make up again! I have been a zombie lately, and I can't wait to regain my life back. I'm not saying this will be easy, I definitely won't say that at 8:00 tomorrow morning when I'm actually trying to get out of bed, but the result is worth fighting for.
These past few days have been really hot. Up in the 80's. Last night I harnessed my energy into shaving my legs! This might be a TMI but this is a legitimate thing to blog about. I can't really shave my legs in my shower because I don't have anywhere to prop up my leg to reach it, unless I want to use the handicap rail that is up at my waist. Some days I just can't stand in the shower that long. I do have a chair in my shower (I'm in an ADA room on campus) but it is metal, and with the cold, all tile room it's not fun to use. So last night with some shorts and fully dressed I sat on the bench and shaved my legs. All this was so I could wear a dress today. I've always loved shorts and dresses. I hated jeans until I was in 9th grade. I hated shoes and socks too, but that's another story my mom can tell. I have a spring dress I found on sale for $3 dollars at rue 21 two years ago. I love this dress. It's very spring fitting, white with green and blue flowers. I wake up this morning to put on my spring dress for the celebration of spring and Easter. I walk outside... and it's 50 degrees and will storm all day. Story of my life. Despite the rain hurting my joints and my back, and my legs freezing when I walk from class to class, I feel this dress has improved my mood. I feel a slight spring in my step, no really, I jumped over a puddle! I landed on my "bad knee" and it didn't hurt. Little things like this seem amazing now. I truly have learned to enjoy the small things in life. I hope that all my friends, family, and loved ones can see the joy in the small things without them being taken away from them. I know the quote is you don't know what you had till you lost it, but I think you can know what you have, you just have to be reminded. So here it is, SMACK, remember you are blessed, you have a million small things happen that are miracles everyday. Notice these, there are plenty of them to out weigh the bad in our lives if we focus on them!
Rereading my post I know this dress has improved my mood. Even though I'm stressed about life right now, I will find the good. After all, most of what we go through we can't change so why dwell? I think I will treat myself to some shopping soon. I rarely go anymore. I will get me some new spring (teacher appropriate) clothes that help put that spring in my step everyday. Who knows maybe it will encourage me to wake up earlier than 15 minutes before my class and have time to put on make up again! I have been a zombie lately, and I can't wait to regain my life back. I'm not saying this will be easy, I definitely won't say that at 8:00 tomorrow morning when I'm actually trying to get out of bed, but the result is worth fighting for.
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