Nutrition

So as I always seem to mention, I'm on a mission to treat my symptoms in ways without popping me with pills, because I've tried that and it didn't work. I had an appointment with a nutritionist today first off to become over all healthier, and second to try to help my "chronic nausea". It was a wonderful appointment. She was very nice. I started by telling her why I was seeing her and what I wanted out of it, then she asked me a whole bunch of questions about what I eat, what food is in my dorm room, what I drink and so on. I learned some interesting facts. I've never considered myself healthy, and with my co-morbidity of a thyroid disorder I've always struggled with things related to diet. Even with my medicines for thyroid stabilizing my numbers, thyroid can still affect how you digest food, hunger, things like that. I don't know a lot about thyroid, I just now I've had it messed up for a long time.
So here are somethings I learned or ideas I got.

• Drinks: cutting pop is an no brainer, with all the sugar. I've known I need to drink more water, but one thing she also suggested is iced tea. This could help my nausea by eliminating the carbonation. She also said something interesting, don't use a straw. When drinking using a stray you inhale air as well which upsets your stomach. I did not know this and I almost always drink out of a straw! Also stay away from juices, it doesn't help enough to out weigh the cons.
• I need to get back on my multi-vitamin, another no brainer. Another thing she suggested is Valerian Root. Although used mainly for sleep it can also help with digestion. She also stated the papaya pills I was taking couldn't hurt and thought it was a good idea. It is also a dietary supplement, but it has enzymes in it which help balance the acids in your stomach. She also suggested just getting a roll or Tums or Rolaids and try taking one three times a day to see if it helps.
• Foods: with my nausea I very rarely feel like eating breakfast! After hearing some of the foods I like to eat she suggested trying to get down a low fat string cheese stick and maybe even peanut butter and (whole-grain if desired) crackers like you get from the gas station. For lunch turkey wraps are good, but when I am short on money or time even at Wendey's switching the cheeseburger to a grilled chicken sandwich, and instead of fries sticking to my baked potato, only use the light sour cream and not the butter. When eating burgers staying away from mayonnaise, sliced cheese alone is 100 calories, and other unexpected fat adders such as bacon, mushrooms, and other gross things you can get. 
• Last with food is trying to get as many fruits and veggies as possible, which I love all fruits and veggies, so that isn't that bad. She also said try to stick to things filled with water such as chicken noodle soup, or broth like soups. Many studies prove we eat the same quantity of food each day. So if we fill that with water we don't eat as many calories.

She also mentioned that as a student check ups are only $5. She gave me a pocket book that has all the foods in it, what you should eat, and a recorder to keep track of everything. She has people who come back every two weeks and she'll go through their log with them and help them. So it's a personal diet trainer for only $10 a month. Getting healthy and hopefully getting a better immune system, seems like a small price to pay. She also had great suggestions like checking out our work out center for water aerobics or something in the water so I could exercise improving my immune system without putting stress on my joints or body. She was very helpful. I suggest anyone who is struggling with food, chronic illness, or just wants to get healthier make an appointment. Just one can really help. I finally felt a medical personal actually sat down and tried to help me as an individual and as a whole person! That is an amazing feeling.
Hope you liked today's blog and learned something new!
Callie

Forever

     I'm sorry it's taken me so long to post! I've been busy with getting back on track with classes and trying to get everything straight or at least my head above water. One thing I've learned this week is to utilize your resources. I got a new phone on Sunday. My phone died, I got a G1 to replace it. It's called a google phone and it's by T-Mobile. I LOVE IT! About a week ago I got on google calendars and put in every class, and then scheduled my practice, homework, sleep, rest, appointments, tests, everything around it! Alex helped me of course. I now can upload this calendar to my phone and it's on my home screen. All I do is click on it and it tells me where I am suppose to be at that time. It is color coordinated and I can set reminders. This is a great tool, and if you have a g-mail account I recommend you playing around with your calendar. I also have a note keeper on there and I made a list of everything I need to do, short and long term so I can start working on it. I still haven't made a pain chart, but I'm racking my brain.

This Sunday I went with my amazing mother to a Lupus Foundation of America- Oklahoma Chapter: Support Group Leader meeting. We talked about running a group, up coming events for advocacy, and ways to grow your group! I'm pretty excited and can't wait to start putting these things into place. I also can't wait to join in on the state wide advocacy to stand up for chronic illnesses!

Overall, I'm doing ok. I'm looking more positive, but I'm still stumped about how I'll exactly go about making it through college. Guess I'm waiting to be smacked in the face with it.

I'll try to get back into posting. Thank you as always for following.

Born to Blog

       I once wrote in blog for a class I'm taking, "I'm a blogger, I blog here, I blog on my support group site(now it's here), I write on facebook, I text my friends, I have a twitter, and even a tumblr (I never get on that one)."  I started with xanga. Oh, the good old days of 8th graders posting about how horrible their lives are and how it's the end of the world because some boy didn't look at them. I didn't know in the 8th grade the dumb boy I talked about would be my fiance, nor did I know my life or struggles would be what they are today. I'm here to do what I guess I was born to do, blog about my thoughts so I can hopefully make sense what's in my head.

     I've been thinking a lot lately about my health vs. school. In my life these are two forces that choose to reside as mortal enemy's. It is difficult to know the balance and I'm still striving for that exact pin point where these two can co-exist. I just did my "advising" today. I mentioned my health issues so I want to take my hours easy. She was very nice and encouraging, it was a little helpful. I have been pretty worried lately about school. I can't take a semester off because my scholarships would go, my loan would start to build interest, and I'm not sure how some people would react. There are only two solution to fixing the problem, change school or my health. I can try as I may, but my health has a mind of it's own and will not change magically overnight. This is a challenging situation that I think I will constantly have to review and asses. As of right now... I'm working at trying to get my health under control. I'm also thinking of my options if a music education degree can't work for me, this way I won't feel trapped and I think this will help calm me, even if I never use these alternate options. I will continue on the MUED program in hopes I can follow my passion. I will try to pace my hours, put some fun back in my life, rest when I can, and try my best to remember all my blessings. I still can move around for the most part without pain, I am in college, I have an amazing fiance to help me through this, a very supportive family, a best friend to help me clear my head and listen to anything no matter how stupid, a passion for music, a gift for my passion, and a future ahead of me that is promising even if it doesn't turn out exactly as planned.

Midnight Madness

Where to begin? Let's start with, I'm ok.

     Last night around 9:00pm I started having problems breathing again. I took my inhaler and after an hour it still wasn't working. I took a hot shower hoping the steam would help loosen my air ways. It was what I remembered an asthma attack being like, I could feel the rattling and it felt like something heavy was on my chest. After my shower I still couldn't breathe so Alex took me to the ER for a breathing treatment. After taking my vitals they quickly got me in a bed. They got me hooked up and I sat and waited for the medicine to take affect. About ten minutes in I lifted my arms to move my blankets (I was severely cold) and my thumbs were numb, it hurt to try to open my hands. I told the doctor after my treatment that I was breathing better but there was still pressure on my chest and my thumbs were numb. She ordered and EKG, x-rays, and blood work to test for blood clots. After the EKG and the x-ray I was back in my room. Asthma medicine makes you shaky and I was really cold, but my face was burning up. I couldn't stop shivering and it was hurting my back from shaking so much. I started feeling nauseous and I asked to got to the bathroom, needless to say, you aren't allowed to get out of bed if you're dizzy. The nurses were come and go, not that often either. Alex kept cold paper towels on me to try to keep me from passing out. Finally a nurse came and gave me a heated blanket, wet wash cloth and told me to smell an alcohol pad. Promptly she left again. Eventually I started getting better ( I believe purely with the help of Alex). The nurse came in and checked me out and told me to wait for a wheel chair. The doctor came in to explain the EKG was great, the blood clot test was negative, and she felt safe discharging me because there was not immediate threat. She said rest would help and I would sleep better at home. She said that it started as an asthma attack, but due to stress and anxiety of not being able to breathe she thinks it turned into a panic attack. She didn't want to diagnose me with anything but wants me to follow up with my doctor within 3 days. We left the hospital and finally got home around 2:30 in the morning. When we got back I was trying to think of reasons I would have a panic attack. I wasn't exactly thinking of anything in particular before it happened. I started talking to Alex about worries with college and my health and not too long after I starting getting hot again. Alex got wet paper towels again and knowing it was a possible panic attack I got a paper bag to breathe into. This seemed to help. If nothing else concentrating on the rhythm of the bad going in and out helped me control my breathing. I have no idea when I eventually got to sleep. Poor Alex was up most the night and when he finally slept it was on the floor because he didn't want to leave me. He is one amazing person!
      Needless to say, I am ok. I feel so stupid for it being something as simple as worry. Thinking about it, I should be able to calm myself down and work through these problems, but I just get sick thinking about it, I can't control it. Alex and I are going to work on a plan. A plan to stay healthy and stay in college. This I think will just take time and effort. It was one long night and it will be quite a journey to find answers to make me better. I will get through this, I will find the answers, and I will not let these things, or my illness run my life. Thanks for reading and your support.

Charts and Things

     Alex and I have ventured back to Norman. We faced a blizzard to get here! It was in the 70's on Friday and Saturday we woke up to 3 inches of snow and it snowed most of the day. Today the snow is melting, and tomorrow it's suppose to be back in the 60's. Oh, Oklahoma weather.
     School is tomorrow, I don't feel like I'm quite ready to go back, but I don't have a time machine so we'll see. I've decided to try to focus more on my health. I know I say it daily it seems like, but I am trying to find ways to make me the optimum patient. One idea I've found is I'm starting a "journal". I am going to make a form of a chart with categories nausea, pain, and fatigue. Each morning and night I will rate each one of these on a scale of 1 to 10 (like they use in the hospital, 1=  fine to 10= take me to the ER now.) My mother used this scale on me when I was little. I have a heart condition, SVT, supraventriculartacticardia. I learned that word when I was 7. I've always been a special kid when it came to health. Basically my heart would hurt, and my heart rate could easily shoot over 200 beats per minute. I think this chart with a familiar scale will help my doctors quickly see what I've been experiencing. I will see what I can make up, and maybe I'll post it later. I hope this has helped you come up with something that can help you express your aches and pains easier, ultimately getting you better care!

1 to 2 Rule

      Today was yet another family day. I've been going since 9 this morning and just got home. We all loaded up in two cars and headed two hours north to visit my great uncle. He's been sick lately so we all got together. I was with my nephew most the day again today. I love his laugh, and sadly enough his ornery smile. I know it's years away but my mother instincts are screaming at me! He was playing with their new puppy. They would run and they would chase each other. On the way home we stopped by a small town that has been bought out and evacuated due to lead poisoning. There is a lot of abandoned houses and buildings so we looked through some. My sister is a photographer and she wanted to take some pictures. She's the artist behind my photos. She could make a rock look gorgeous. (sales bit- photographybykelci.com, she's amazing and you can find her on facebook, photographybykelci.) On the way home we listened to a very tired baby try to fight of sleep. Before today I was still a little sore from Tuesday. I plan on resting the rest of this spring break! I'm home, I'm going to eat, then slip into my PJ's and lay in bed. I might watch a movie, then I'm out for the night. I need to rest up! This was suppose to be a break. We leave back for Norman tomorrow, and it is all too soon. I could use another week of spring break. I think my mom summed it up the best.
One day of play, two+ day's to recover.

Imelda

     Yesterday was a girls day. I went with my mother, aunt, and sister, oh and we dragged the two year old nephew too, shopping out of town. We squeezed in my tiny car and headed south almost an hour in hopes of a better selection of shoes and food. (If you don't know me, they call me Imelda. I. Love. Shoes.) We spent the majority of the day walking around shopping our money away and eating to our hearts content.  About half way through my mother and I both started to slow down, she has Lupus as well as Fibro, be we hung in there till the end. Chasing after a two year old was the joy of my day. He is the cutest thing. He loves girls already. Every time he saw one he'd ignore everyone and just stare. I'd ask if he thought they were pretty. He would quickly respond "uh-huh." Oh, it's so cute to see him finally talking. At Applebees I kept him entertained most of the time with me making faces and him trying to mimic them. Two year olds can't cross their eyes as easily. And when in doubt, I fed him Nana's M&M's. Chocolate fixes everything!
    Today? Oh, boy. I hurt. I can see my mom hide her grimaces, though she is way tougher than any human being alive and can take any amount of pain. We have matching limps, which might sound endearing, but it's not. The point of this blog though, is to tell you, it's worth it. Despite the pain, flares, and repercussions hearing him laugh, seeing him talk, being an aunt, getting some cute things, being a teenager, being a daughter, a sister, a fighter, it's all worth it. Despite how healthy and good you feel, it's nothing without a life. I'm not saying ignore your symptoms! You still need to pace. But at some point, when pacing means no social life, it is worth some aches and pains.
Yesterdays perks
1. A really cute teaching purse/briefcase
2. Three pairs of shoes, all teaching approved
3. Good food
4. Family time
5. Memories that will last me a life time, that overpower the feelings and memories of pain.

Elephant Day

    Yesterday was elephant day! -- I guess I'll tell  you the story. My best friend has a shirt with an elephant and a mouse on it and they have a heart around them. It says "love is blind". Some point down the road it became us, because she is 5 foot nothing and I'm almost 5'8 in flats. Anyway, it was funnier if I was the mouse and she was the elephant. So she is my elephant. Oh, and we sing soprano together.-- We went to eat, looked around the mall, tried to go to a movie, and then ended up at walmart, yes that is all there is to do in my hometown. At walmart we ran into tree of our friends, and then three more came (again, that's all there is to do), at that point we got kicked out because of noise. We proceeded to a park and a couple more showed up. It was a big reunion. We played sardines (like hide and go seek) in the dark and spent almost an hour looking for the first person. Well needless to say, after walking all around the park three times I was done walking. My elephant was cold, so we said goodbye to everyone and went to Eggberts, the only thing open at 11:30 at night. All in all, it was a great day :)

The part that bothers me? Playing a game that two-three years ago was weekly for me, and having to stop after one round because I couldn't walk anymore. Instead of running around I was terrified I was going to trip and fall, hurting my knee, and not be able to get back up. At one point they looked through the woods and I physically could not follow. I told them it was just my knee, because they all know about my knee. I had surgery on it last spring break for "lateral discoid meniscus" (a birth defect). But it wasn't just my knee preventing me. My hips were screaming, my feet needed real tennis shoes, my back was hurting, and my left thigh was pounding from compensating my right knee. I don't even notice my limping after four years, until I hurt from limping for so long. Towards the end I just wanted someone to grab onto to help me walk. I never noticed how much I use Alex for that. (Thank you, Sweetheart, for letting me use you to walk.) I was so glad and lucky I got the time I did playing games with my friends. Getting to see them all was great, I missed some of them a great deal! I just wish my body and health wouldn't stop me so soon.

Blast from the past.

     I've have asthma since birth. My mom said I was a mouse on speed once they got my on my albuteral treatment. As I grew older the attacks didn't come so often and weren't so bad. I nearly forget what they feel like they are so far and few between. I guess it was more this morning. It's spring break so I was going to go to bed around 3 or 4 and just under my chest starting hurting. So, I rolled to my side, that made it worse, and then my stomach, couldn't breathe at all there. So I sat up and called Alex. After 2 puffs on the inhaler, 10 minutes with a towel over my head over the sink with steaming water, 4 ibuprofen, 1 breathe right strip, walking up and down the hall of my dorm, and 2 hours later it was still hard to breathe. Alex threatened the emergency room, mom told to keep her updated, but I was not wasting 200+ dollars just to get a dang breathing treatment. I eventually was so tired I fell asleep and today I have to wear loose clothing and take it slow.
     The trip back home was an adventure all in itself. Driving home somewhere around midway I took my eyes of the road and was playing with my phone. By the time we hit the toll (2-5 minutes later) I was nauseous. I spent the rest of the hour and a half nearly sick to my stomach and trying to force myself into sleep. Sleep= no pain or nausea. It's my medication of choice.
I'm sure Alex at this point thinks I'm going to fall apart. One thing after another. (I'm sorry I keep scaring you honey!)
Lessons for today?
1. childhood problems, at least when it comes to health, never really go away
2. my body hates me
3. I need to build my good karma
4. cold wet paper towels are you're friend
5. music does help reduce nausea
6. walking clears your sinuses
7. sleep is the best medicine
8. Alex is in it for the long hall, he'll truly mean for better or worse, in sickness and in health during our vows at our wedding and I WILL crack up at this statement.

Break!

It is spring break! I survived my concert, yay for two hours of standing, my test, and my hour in crazy-ville. I am so happy to have a break from classes. I did, however, wake up this morning with a sore throat and coughing. So I'm sick on my break. BUT! I don't have to worry about missing class. I'd much rather spend my break sick than be miserable as school or miss class. So I'm glad it came when it did, no matter how backwards that should be. Alex and I are staying in Norman for church tomorrow then we finally get to head back home. I can't wait! I miss home. You always want out of the house when you're a teenager, and I'm not saying I want to live there forever, buy you do miss it. I like going back for breaks. I miss my family, my pets, my queen bed isn't so horrible either.
Alex and I have been doing some looking at money lately. There is a choir trip this summer. We're going to Austria! I'm very excited. We just figured out about all the money for our trip, and some extra spending money. It will be an amazing 2 weeks traveling Austria, singing in Haydn's church, seeing where Mozart lived, a once in a life time type trip. One concern is they mentioned a lot of walking as well as stairs. I am a little worried about my aches and pains, but I definitely can bare through it for this opportunity.
I'm also excited for the prospect of, when we return for our amazing trip, we will be returning to our first apartment in Norman. It will be so nice to have our own place, kitchen, laundry, a real bed, our own shower. I am just really excited in general about my future and can't wait to fly by the rest of this semester. Hopefully by the time I return to school I will have some of my health figured out.

Teacher

    Today was an ok day, I did not wake up for my first class, but I really enjoyed our field experience. I can't wait to be a music teacher. The thought of teaching kids music makes all the struggles here seem worth it. This quarter of the semester is winding down, as students spirits are winding up! Only one concert tonight, one Spanish mid-term, and one class of a crazy lady talking for an hour and them I'm free! I am very excited. I get to take my time packing, watch some movies with my Alex, church then off we go to home. I have a lot of homework to catch up on over break from being sick. But the idea of no class and I can rest when I like, I don't think I'll mind the homework as much.
    I sang in studio today. For those of you not music majors, studio is where all my voice teachers students get together, and we sing for each other. Then we talk about what we did well, or bad, and how to fix it. In front of everyone. I love music, but I have no desire to be a performer. I want to teach little kids twinkle twinkle, not perform Queen of the Night Aria for the Queen of England. I was the last person to go and I sang Stanchen by Johannes Brahms. Honestly, all that was running through my head was, "remember the German, remember the German" and occasionally I thought "oh, placement". After I finished the song I looked to the back of the room and tried to control my shaking. They clapped and I shook out my arms thinking I would have to go back and fix something, so might as well get the nerves out. My teacher just said it was a great way to end class, that I sounded like I was enjoying my new soprano song, and that I flipped great. I was shocked. After class one of the seniors in my studio came up and told me how good I did, that he hadn't heard my voice before and I surprised him. I'm sure I turned bright red, and the people around me that know him just said, "wow, that's THE *insert his name here*, THE *name again*". I was so proud of myself. With being sick, and not being able to eat, and everything going on, I got that reaction. Not enough for me to want to become a performer, but definitely makes the prospect of singing in studio again, not so scary. :)
     I've had some people approach me (even electronically, ok, mostly electronically) and tell me how they enjoy my blog and they read it all the time. That is so amazing to me. It's so awesome that I am spreading the word. Even though, as I told Alex, that I don't necessarily want everyone to know my struggles, someone has to explain. Talking out right about things that are difficult, the way I'm changing, problems I have with myself now that I have this illness, it's not easy to admit these things. But, that said, other people need to understand. People need to understand and sympathize on some level. If I can change that, if I can help others understand and make other people sufferings' life that much easier? That is amazing. So thank you! Thank you for reading, for sharing, for supporting, and for understanding!

Morphing Mongrels

Symptoms are often changing, challenging, and downright strange things. As mentioned I have what I call chronic nausea, but last night something not so chronic came up. I did not get to my medicine till about 1:00am due to homework issues. I was going to skip it all together, but around 12:00am my legs felt weird. All up and down my calves it felt almost like they were constantly flexing. They were tingly and hot. Alex got me a heating pad for a while and that seemed to help, but I gave up, wanting to sleep, I took my pain killers. I don't think it really went away, but I didn't seem to notice it anymore. Alex said his goodnight and went to his room. Shortly after I called him, (sorry for scaring you). I was really hot, and felt funny. I have passed out before and it felt similar so I wanted to call him just in case. I took off my covers, my fan was full blast and I drank some cold sprite, but nothing took away the stinging in my face or the heat. Alex was worried and despite my attempts at sounding okay, he came back to my room. I apparently was slurring my words (don't really remember that at the time). He got a wet paper towel and cooled down my head and shoulders. After about 5 minutes of him re wetting and talking to me I started to feel better. Both of these were really strange things that I seem to be "lucky" enough to encounter. My body loves to keep me guessing. I guess what I'm getting down to is
1. symptoms are cruel creatures that morph when you think you have just solved and treated them
2. Alex's are great to have around
3. pain killers at 1 in the morning leads to poor concentration for 8:30 classes
And lastly
4. ONLY 2 DAYS OF SCHOOL TILL SPRING BREAK!

Change

Standing is a simple task. An hour for someone my age shouldn't be a big problem besides boredom. Today in one of my choir classes, standing for an hour nearly killed my knees and back. At our break I sat on the floor and after 15 minutes of bliss we were back on our feet. Things like this completely wear me out. Holding my choir folder up to sing hurt my arms and after class I walked back to my dorm laid down and now I am posting this, because I cannot move from my bed. I am lucky in that I don't really have anything to do tonight so I can actually take my pain medication. Sadly, I'm excited about the prospect of taking the edge off the pain and getting to just lay in bed. I am not a lazy person and being happy to just lay in bed didn't use to be my idea of a good time. I was a barrel racer. I use to travel to my aunt and uncles house almost every weekend and ride horses. I can't even imagine riding hours on end anymore. Your loved ones suffering have to face the fact they are no longer the person they use to be. This can be a scary thing. Please remember they need someone to listen and an attempt to understand.

Tips for the healthy

Callie is sick today. She's been really nauseous for a while now. It really sucks, and it makes me sad. :( But, she has asked me (Alex) to post today, so I will!

I want to talk about what I've learned from being a boyfriend (and now fiance) to someone with Fibromyalgia. There are a few things I think everyone who knows someone with an illness--Lupus, Fibro, MS, etc-- should know.

1. COMMUNICATE! Know what that person's main symptoms are and what THEY think causes them. (Weather, stress, food) Ask each day how they're feeling and what's bothering them physically and emotionally. They need someone to listen and believe them.

2. KNOW! I am the first person to say not to go reading depressing articles about illnesses because it's not helpful. I have recently changed my mind about this (thanks to Callie :) ). You need to know as much about the illness as you can. This way you can effectively suggest possible symptomatic treatment (ibuprofen, pepto-bismol, etc).

3. PAY ATTENTION! They may know they are about to have a flare of symptoms, but they also may not. Don't hover and obsess, but be sure to watch for changes in how fast they are moving around versus how much they have physically done recently.

4. LISTEN! and BELIEVE! I said this earlier, but they need someone to believe them. They've already had tons of doctors think they are making up symptoms or are just depressed. You need to be a friend and listen and believe them in their struggles.

5. HELP! When they ask for help with something simple, opening a jar of pickles or something, just do it. It may seem trivial and unnecessary, but we don't know what they are feeling. We really don't. Callie does an excellent job of attempting to describe the feeling of a chronic illness, but I know I can't grasp the concept very well. They need your help so they can live life to the fullest.

6. LAUGH! You need to be able to laugh in the face of adversity with them. They may be having a terrible day, but you need to find ways to take their mind off the pain and frustration. Watching a funny movie, reading givesmehope.com, watching television, coloring in coloring books. Find what works best to help them laugh and forget about the pain for a while.

7. ADVOCATE! I cannot stress this point enough. They may be doing things (like Callie and starting a support/advocacy group) to help themselves, but you need to be a voice, too. Talk to people about it (not necessarily obsessively) so others will know about it and talk to their friends. Eventually, more people who need help will find help.

I know I'm only speaking on my own experience. If you think I'm wrong/crazy or have some tips of your own, I would love to hear what you have to say. Thank you!

Believe in a Cure
-Alex

The big move

So I am moving my blog. I wanted to make it easier for you as readers to get to as well as separating CIAA's website from my blog. Also, hopefully this will allow me to update more often. I hope the change wasn't too much for all of you. Thanks for following me as I still embark on my journey through college while battling my chronic illness.