Pain or Cane?

Recently, I bought a cane. My fibro has gotten to the point where some days I'm not sure whether or not I could walk places I needed to go. I have been wrestling with the idea of buying a cane for sometime now. But I'm 17 years old, I couldn't stand the thought of having to use something to walk. I have came to accept the fact that I have this sickness, but I haven't completely came to the reality that I may have to things like a cane. I know how people will look at me when they see me. A "perfectly healthy teenager" using a cane to walk into the store. Not that I really care how people look at me, because something being chronically ill has taught me is everyone has a story and you don't know everyone's, so why would you assume when you don't know? The thing that really bothers me is the people walking with me. My friends, family, etc. What do they think? My boyfriend made a comment that stuck with me. He said, "The other day I was with you and you walked perfectly fine, today I see you and you need a cane to just walk." That stuck with me. He didn't mean it in a mean or rude way, he was just making a comment. I thought about that all day long. How crazy it must seem to my family/friends that one day I'll be fine but maybe the next, I have to cancel my plans because I can't move. I know that if I was a friend of a person like me, I would think that they were crazy. These thoughts have been stuck in my mind ever since Dustin made that comment. I guess my question is, how do you break feelings like that? I don't want to feel like I'm embarrassing my friends when we go places and I need my cane. Does anyone have any advice on how to handle situations like that? If so, leave me a comment here or tweet me: @kelsoopadoo

Thanks for reading!
-Kelli

Invisible Illness Week 2011

Its Invisible Illness week, September 12-18. I have seen many spoonies doing this on their blogs for invisible illness week, so I thought I'd join in!

1. The illness I live with is: Fibromyalgia.
2. I was diagnosed with it in the year: 2010
3. But I had symptoms since: 2007
4. The biggest adjustment I’ve had to make is: Not being able to go to school all day and not being able to plan anymore because you can not rely on how you are going to feel day to day.
5. Most people assume: Fibro is just something that is in  your head and if you would "move and get out more" it will somehow, "get better." I'm here to tell you... That is not the case.
6. The hardest part about mornings are: Everything about mornings is hard for me. The stiffness, the fatigue... never feeling like you actually slept.
7. My favorite medical TV show is: House.
8. A gadget I couldn’t live without is: My iPod. It keeps me connected to my spoonie friends on Twitter and it is my daily solution to get away from the pain. I do everything on there.
9. The hardest part about nights are: Trying to actually get comfortable  when lying down to go to bed. Pain is super uncomfortable so you can imagine that constant battle every night. Granted, some nights are better than others. But they are all uncomfortable. 
10. Each day I take __ pills & vitamins. (No comments, please) I'm "lucky" someone would say that suffers from fibro like I do. I only take 3 pills every day, plus my vitamins, and pain medicine as needed (which is most of the time).
11. Regarding alternative treatments I: Tried about it all... the only thing that really helps me is just caffeine. Crazy as it seems.
12. If I had to choose between an invisible illness or visible I would choose: Invisible. I've met so many amazing people and it gives you a new perspective on life. 
13. Regarding working and career: I am still in high school (senior year, yeah!) and regarding what I want to do in life, well. We'll see. I'm going to go to college and I am going to get a degree. I am going to do something with my life, despite the fact that my illness disables me to a point.  
14. People would be surprised to know: Fibromyalgia has been a motivator to me. It has made me a better person. 
15. The hardest thing to accept about my new reality has been: I can't do what I always want. 
16. Something I never thought I could do with my illness that I did was: Have a relationship like the one I do now. My boyfriend is the BEST thing that has every happened to me and I am so blessed to have a supportive guy like him. I'm going to marry him. You'll see. 
17. The commercials about my illness: Piss me off. I always mute the TV. I mean really, a commercial CAN NOT describe fibromyalgia as "over-active nerves connected to the tissue that cause immense pain." Anyone that suffers from fibro will laugh in your face if you were tell them that is all fibro does.
18. Something I really miss doing since I was diagnosed is: Being active. I miss cheer-leading. I miss running miles without even breathing hard. I miss just being able to take a walk without feeling like I climbed Mt. Everest and back. 
19. It was really hard to have to give up: Full school days. I go to school on half days and I missed more than my fair share of high school. I had to give up being a kid. 
20. A new hobby I have taken up since my diagnosis is: Writing. I may not always blog. But, I always write. 
21. If I could have one day of feeling normal again I would: Go to the mountains with my pudge. I would walk down the roads as far as we could, swim till we couldn't anymore, play tag with him, let him pick me up and swing me around, play fight with him, give him piggy back rides.. Oh, I could go on.
22. My illness has taught me: Everyone has a story. You just have to listen. 
23. Want to know a secret? One thing people say that gets under my skin is: "Oh, you have fibromyalgia? How old ARE you?" General misconception: fibromyalgia is more prominent in older people. FALSE. More than 5% of fibro suffers are between 15-25.
24. But I love it when people: Treat me like a normal human being and just tell me they are here for me if I ever need them.
25. My favorite motto, scripture, quote that gets me through tough times is: "In the same way, let your light shine before others, so that they may see your good works and give to your Father who is in Heaven." - Matthew 5:16 Stay positive. You were created for a reason. Show how God gets you through your trials and you could be a light to others through God. 
26. When someone is diagnosed I’d like to tell them: Find support. Educate yourself. Get a twitter (seriously, that is my biggest support). 
27. Something that has surprised me about living with an illness is: How many other people are just like me.
28. The nicest thing someone did for me when I wasn’t feeling well was: I remember when I was first diagnosed a bunch of my friends put their money together and bought me this huge stuffed dog. I remember how upset I was about being diagnosed and then when I saw my friends walking towards me with that dog and the look of comfort on their faces, I thought to myself, "I can do this. I can live with this. I have hope." 
29. I’m involved with Invisible Illness Week because: Its so important to raise awareness. People need to know just because our illnesses are invisible, we are not, we are real humans dealing with REAL stuff. 
30. The fact that you read this list makes me feel: Happy. :) I love you all!

My life has never been the same since July 27, 2010.

A year ago, I woke up a different person.

I never knew what was next in my life. My whole life something was always happening. Whether I lost a family member, a friend, was diagnosed with an incurable chronic illness, then another shortly months after. I really never knew what was in front of me. 
But, one year ago today I did the best thing I could have ever done for myself. I said, yes, to Dustin Breakfield when he asked if I’d be his girlfriend. Nothing could have ever prepared for me for how he was going to change my life. Because 6 days later our relationship was tested. I lost my second best friend to suicide. Dustin held my hand while I screamed at God… Dustin held me while I shook because I never thought I’d feel this way after Briana. I always thought Jake would be there. Dustin has always remembered the date that Jake died. August 2, 2010. He never forgot a month. Everyday on the 2nd he would do everything he could to make those days tolerable.

Dustin always knows what to say to me. He knows how to tell when I don’t feel well that day. He holds me up to walk when I can’t some days. He writes for me when I can’t use my hands. He holds me when I feel like I have lost my mind because of this stupid syndrome(s). I’ve watched people walk out of my life because they didn’t know how to deal with the fact that I am sick. Sick with something that doesn’t always make me feel social. But, for one year, Dustin has been there through it all. While I cry about friends lost, people gone, family trouble, school, the fact that I have this horrible sickness. He sings to me to sleep when the only thing I could do was cry because of the pain. Dustin has been my rock for the last 365 days. I really quite honestly don’t know where I’d be if he wasn’t here. 
And I don’t ever plan to figure out what life would be without him.

I love you so much, Dustin Cole Breakfield. You’re my forever

Who spends fourth of July with people anyway?

As I sat at home on the fourth of July tonight, eating my lactose-free ice cream, watching Switched at Birth on ABC Family, I wondered what my boyfriend was doing, what my friends were doing, so on so forth. The rain has set in this week and rain for some awful reason makes my fibro worse. Flare up, more than usual, if you will. And I was thinking about last fourth of July when I was sitting with my friend, Trent watching fireworks until late and then went on an all night adventure with my other friend, Jake, I couldn't help but think... what is so different about this year? Whats different is the fact that my fibro is worse than ever these days it seems and my "friends" have all sort of well, disappeared, since September when it starting getting worse. They didn't all fade at once, but overtime they did. Whether they have met new friends who can do things all the time whenever they want to, or a significant other who they are completely wrapped up in, or the fact that they just can't understand why I feel so bad most of the time now. It occurred to me. This is NOT my fault I've gotten worse and why aren't they there for me? It mad me so mad thinking about this. Why are my friends not there for me? Why don't they try to understand? I see their post on facebook, on tumblr. The pictures the post on various social networks and things that I can openly see and they know that. I get a text from a few of them once or twice a week asking how I am and what I've been up to. And I now I think, why do you even bother? Is it like you actually care? I know that no one can understand my syndrome besides the ones who actually have it and then sometimes we don't understand what one another feels... but, how can someone who used to be your BEST FRIEND just all of the sudden fade away to a text once or twice a week and the, "oh sure! we'll hang out :) i miss you!" And then never try to hang out with me. Inviting me to watch a movie at your house with five other people just because I asked to spend time with you the week before, is NOT what I meant and you were my "best friend." You think you would know that. But I've been wrong about many things in my life. Loosing my two best friends to them dying was something I never imagined in my lifetime. But then meeting someone who was just like them both in one body and was there for me double the time they were. Now that was a shock. But, as everything seems to go in my life, I knew it was too good to be true. I am past your apologies, your text once a week. You know what I want? I want a friend who I can rely on. A friend that will be there for me no matter what I have or what I am faced with. Because, in fact, I am not as strong as you think I am. You ever thought that maybe you were my strength? Even though you'll never read this, I am happy that you have found friends you can hang out with at the drop of the hat. I will always remember the memories we made.

Kelli

The first of many blogs

So, I had a great idea after reading blog after blog last night. Create my own blog. Genius, right? I know. I have   had fibromyalgia since I was 13. The medical definition of fibromyalgia is, "a common syndrome in which a person has long-term, body-wide pain and tenderness in the joints, muscles, tendons, and other soft tissues. Fibromyalgia has also been linked to fatigue, sleep problems, headaches, depression, and anxiety." They say fibro is caused by a "traumatic experience" that happens to your body. Whether it be having a bed frame dropped on you (that's mine) to have too many vaccines from being in service for years or a terrible emotional experience that shook your life. Woman from ages 14-70 suffer from this horrible syndrome. And that's another thing about fibromyalgia. Its a syndrome not a disease. I made the mistake of calling a disease myself for many months but from many hours of research I spend on my illness I soon found out it was a syndrome. Fibromyalgia is not something they have all the answers for. In fact, they have no idea why that "traumatic experience" that happened causes or triggers this horrible chronic illness. Earlier I told you the medical definition of my illness. But I'm going to tell you what my best friend Jake used to say is "Kelli's definition of suck." Fibromyalgia for me is waking up every morning feeling like I ran a marathon the night before. Fibromyalgia for me is some days taking a shower and the pellets of water that comes out of the shower feeling like needles into my muscles. Fibromyalgia for me is being not being able to go to school all day. Fibromyalgia for me is looking my boyfriend of almost a year in the eye and telling him that my body is too sensitive to his touch that day and watching the look of disappointment rise on his face. You see, fibromyalgia is something I will/would never wish on my worst enemy. Although I do not regret the fact that I do have fibromyalgia. I have met some of the greatest people on this planet of suck and became great friends with them. If I didn't have this I would have never met those people that share the same experiences as I do.  I wish I didn't have this stupid disease but if it so is God's will for me to, then I will be dang if I don't make the best out of it.

Much love and less crappy days,
Kelli