S thinks that it took coming in contact with 4 people who were sick to create a "super virus" that took him down. I was doing well on the staying healthy front... until S went down. Then I got super sick. Yesterday was spent in a haze of feverish sleep, achy muscles, and crazy dehydration. I feel better today, but I'm still under the weather. At least the fever is broken. (So much for my grandiose plans of cooking and packing and cleaning!)
It must have been a super virus, because it took C out, too. He started sniffling yesterday morning, and by the time he came home from work he was constantly blowing his nose. By bedtime he was in sweats, shivering with fever.
Today, before his fever went down, he wanted me to cuddle with him to keep him warm. I figure I've got an immunity to this thing now, and I was already in bed, so why not? He was in a lovey mood for sure. He kept rubbing my arm or my side, squeezing my hand, wrapping my arm around him, saying "I love you, lady."... but there was one thing that melted my heart.
"I loves you, lady."
"I loves you, too."
"I think I need two of me to love you as much as I should."
"What makes you say that?"
"Because you're worth it."
Yeah. I melted, pretty much. :) And then we drifted contentedly off into feverish sleeps. lol
There it is, in all its garish glory. The Bling Chariot.
I was debating on whether or not to post any pics of the Chariot, or myself with it, on fb, but I've decided that... I really don't feel like dealing with the questions... regardless of how proud I am of my artwork.
I won't hide it, so if it ends up in my pictures during the holiday, that's fine. But I'm not going to go out of my way to announce that I've got a walker now. (Besides... it's not like I use it all the time, anyway...)
I think I've figured out a way to articulate what my big deal is with this fibro stuff.
So I'm walking down the street, minding my own business, when all of a sudden someone hands me a grand piano.
I never asked for a grand piano. I do not want a grand piano. But that doesn't matter, because now I have a grand piano to carry around.
The problem is that a grand piano is big and heavy, and there are all these awkward edges that I keep bumping into, and quite frankly I'm not even sure how to hold a grand piano in the first place! I mean, I don't even know how to play the piano.
The best part? It's a magical piano, visible only to a select few. To most people, I'm just staggering around for no good reason.
So I've got this grand piano, and it's big and heavy and I'm trying to figure out what to do with it, because carrying around a grand piano is very new to me. What I'm hoping for is that someone will see how big and heavy and awkward this piano is and come help me carry this thing. I see C standing off to the side and I think, "Oh, he'll help me carry this piano! He cares about me, so of course he'll help me carry it." But C doesn't come help me carry the piano, and I am disappointed and confused, although I can't really articulate why.
From C's point of view... I have a grand piano. There is nothing he can do about that, and although he would love to help me carry it, he can't do anything because his hands go right through it. All he can do is be there for me as I try to learn how to carry this piano around.
I realized that I have been hoping that someone would come help me carry this piano-- friends, family, anyone! I actually envied my friend with cancer a little bit, because people get behind someone with cancer and show such solidarity and support... and I want that, too! I want people to help me carry my piano!
But C showed me that no one can. I have to learn how to carry this big ol' thing on my own. People will be there for me, but that's pretty much it...
It is a big psychological hurdle for me to jump, this fibro... it's not like I didn't struggle with it before, but knowing what it is, as well as the vicious pace of symptom progression, has made it difficult to wrap my brain around.
Hearing Mom explain my "old lady disease" to my brother kinda wilted something inside of me... it sounded so sad! And I'm a little angry, because it's not fair that other diseases get recognition, you know? But something like this... It's like no one but me realizes that my future has been irrevocably altered! Or it's like people pity me, but no one is upset on my behalf, I guess. I just wanna yell out, "HEY! This is as serious as cancer to me!" If I were fighting cancer, I'd be upset that I might not get to live the life that I want, that it may all just go away... and I'm facing the same thing now! My life is at stake, but it's so subtle that no one picks up on it...
I'm fighting for my life, too. And if I don't fight... I may as well just lay down and die, frankly...
Maybe I just really want someone to help me carry this damn piano, but it's a wish that will never be fulfilled.
I'm just reeling from the shock, still... not sure where to grip this thing, or how to carry it without the sharp edges banging into me. And I'm not sure what exactly I'm wanting or needing from those around me, but... I do feel pretty alone. And it's sad.
Anyway, I plan to learn to play the piano. So there. :)
Well, after much hard work and preparation.... I missed two questions on my A&P final. It's okay. They were questions that weren't on previous tests, so I would have had to have been studying ALL my notes from the semester to have caught them, since I didn't remember off the top of my head. 98% is not bad, and I finished the class with 801/800 points. Yay! My goal for that class was to finish with extra points, so... Mission Accomplished!
My math final is tomorrow, and I'm a little nervous... because I spent so much time studying for this other class, I have neglected to study math. That's what today is for. But it's not like I have to memorize definitions or anything... it's just working out problems, and I've already done the prep worksheet. I'm just going to go back over the worksheet and see how I worked out the problems.
I picked up my walker yesterday. The lady I bought it from was very sweet, but she said, "You look a little young to be needing a walker..." LOL! Yes, well...
I'm itching to get to work on blinging it out, but I know that I need to focus on studying first. Priorities, priorities... Once my math final is over, I can work on my walker and start packing for my trip home. I'm so excited!!
Anyway, I've settled on a name for the walker-- the Bling Chariot. It's gonna be freakin' sweet.
Anyway, today's the day of my first final! I've been studying hard, and I feel confident. I have one more final to do (math), and a project to turn in for my online class, and then I'm freeeeeeeeeeee! Wednesday is the last day of school stuff for meeeeeee! (Except for ordering books and applying for scholarships and preparing for next semester. lol)
Today, I go to pick up my walker.
I'm still not sure how I feel about this. I told C last night that I'm excited, because I feel like the only other option is to be devastated. Sooo.... excitement, it is! Here's the craigslist photo:
My plan is to pimp my ride over the next few days, and I sure wish I had a camera... Oh, wait! My computer has a camera. Silly me. :) Yeah, so I'm going to pick up nail polish from the dollar store and paint flames on the legs and maybe wrap the foam bar in brightly colored duct tape. I might possibly make use of adhesive gems, as well, or some sparkly stickers.
But I need a name for my new hot rod... I'll have to think on it.
I wonder if people will treat me differently on days when I'm using a walker?
Clearly. (Today is a prolific post day, it seems.)
Today was a tough fibro day, especially pain and mobility-wise. It got me to thinking about my long-term strategies for living with my new reality. I had spent the last few weeks being miserable with my new meds, yet hoping that they would magically cancel out the fibro symptoms. Alas, I have come across statistics in several places that indicate the meds will only help about 50% of fibro peeps with about a 40% diminishing of symptoms.
Basically? It's here to stay. Like my food allergies. Like my hypothyroid. Like my trashed adrenals.
This is my new life. Welcome to it.
But I've also been thinking... I don't want it to be a dismal thing.
I mean, sure... I could focus on the pain, on the limitations, on what's been taken away from me... and I may, from time to time. I won't lie. Sometimes I want to just sit down and cry.
However.
I have a friend who is going through cancer treatments. It started off as breast cancer, metastasized to her liver and brain, and recently showed up on her brain again. She has become The Chemo Princess, and wears a tiara and carries a magic wand with her to every treatment and doctor's appointment. She lets her personality and her joy for life just shine through, and she totally rocks that cancer. (If that makes sense.)
And someone posted this video on her wall, which I watched and came away totally inspired. Like, seriously... it speaks to me in a very deep way. This is my "Fight!" theme song for when I am tempted to curl up in a ball and whimper my way into the night.
I don't have cancer. My illnesses are chronic, but they are not life threatening.
But still, it got me thinking... about how I, too, want to live my life with the joy that I see in those ladies who are fighting for their lives.
In a way, I am fighting for my life, too. Not in the sense that I will die, but in the sense that my dreams, my every day life, my previous way of living... it's all at risk. It's all up in the air.
Will I continue to pursue my dreams, or will I run up against a brick wall and think, "I can't"?
Seriously... I've been wondering lately if I can do this massage thing. It would be so easy to think, "I can't", and give up. But no, I know that I can!
Granted, I have to make adjustments. That's a given. There are things that will be new, scary, uncertain... and there will be things that will be infinitely more difficult than they once were. There are also things that will get easier with time and practice.
But, I mean... I want to live my life with joy and intention. Rather than let this stymie me and stunt me, leaving me a crippled shadow of what I might have been, I want this to be a wake up call to be intentional, to be grateful, and to take advantage of every "good" moment that I have. I want it to teach me to rely on others when I have to, and to be relied on in turn in whatever ways I can.
I know I'll have bad days. Like today. Limping through Wal-mart at half the speed of everyone else... I didn't feel much like smiling. But there were things that did bring a smile to my face. Joy doesn't translate into bliss, I know that. I won't always be in a happy mood. I know that. But I can live a life of joy.
I want to be an inspiration like those ladies are. I want people to spend time around me and come away thinking, "Yeah! I can do _____! It's totally possible! Man, I love life! It's hard sometimes, but I sure do love life." 'Cause that's what I think when I see those ladies and interact with my friend.
I wish I could adequately describe how it feels to have optimism take root inside after feeling little but shock, denial, and disappointment about my new diagnosis until now.
I can still live a good life. It is going to look different than anything I'd ever planned for myself, but I can still live a good life.
I don't believe that God planned this for me. "Plan" denotes that he would intentionally inflict me with these diseases, and I just can't believe that. Allow? Clearly. Prevent? Obviously not. But plan? Don't think so. I would say, rather, that this is being woven into the tapestry of my life. And I can accept that.
I'm planning to buy a rolling, folding walker for my trip back home this Christmas. It'll help me with all the walking I have to do (after hours of sitting--ouch!), and I can use it to help carry my backpack, maybe even as a place to rest if I get one with a seat. I'm going to run the idea past C after Nerd Night wraps up, but I think it would be helpful, even for days like today. I tried using the shopping cart as a walker of sorts, but the metal and plastic digs into my hands/arms and hurts just as badly as walking, maybe more. He didn't like the idea of my borrowing one of the electric scooters they provide, but he can't put his finger on a reason why. He just didn't want to be seen with someone in one of those. (Ouch, a little...) I hope he'll be okay with a walker.
So. Changes. I need to take care of myself better. I need to start eating proper meals, nausea or not. I need to get mild exercise, pain and fatigue or not. I'm trying to branch out and find a support network on the internet of other "fibromites".
I am challenged. I am encouraged. And I am hopeful.
'Cause, I mean... what doesn't kill you makes you stronger! :)
Note: Despite the optimistic overtones of this post, I did shed some tears while having the "I think I need to buy a walker" conversation with C. He casually said, "Well, if you think you need it, go for it." I don't know what I was expecting, but somehow that brought up second-guessing thoughts. "Do I really need it? I mean, can't I just suck it up, and... No! You need to take care of yourself!" I believe I'm making the right choice, though it's hard. I did cry, mostly because I never thought that I'd be in a place where I'd even consider buying a walker, much less at 24. I feel a little like a faker, like I couldn't possibly really need something like that because only people who actually have it badly need stuff like that, and it could always be worse, so I will never qualify. Okay, seriously? I would have been happy to have a walker today. I would have. And yes, that makes me sad. I suppose I'm just grieving... grieving for the life that might have been and has been-- the healthy (hah!), active girl who goes backpacking with her friends... vs. the girl who now needs a walker. I'm afraid to be an embarrassment to C, and even more afraid of being a burden. I know it's not for every day. But it's still a shock. Sobering. This is real. This is here. This medicine has not cured you. This is a part of your life. I know not every day will be like today, but it can feel that way when you're hurting. But I know it won't be. So I'm going to buy that walker, I'm going to wrap it up in neon duct tape (so it will look cool, of course! 'Cause really? If I'm gonna do this, I'm gonna do it right!), and I'm going to smile. I'm going to be grateful for a fiance that stands by me through good days and bad, and who is willing to buy his woman a walker if she needs it... even if she is only 24.
