I hate clowns.

You would think that after dealing with something for nearly 13 years, you would be completely familiar with it. For instance, Fibromyalgia has been a part of my life for, you guessed it, nearly 13 years. Yet, just today, I discovered a new, or at least new to me, symptom: Raynaud’s Phenomenon. I have never been a fan of the cold, in my world, cold = pain. However, today, things got so much worse.

We had a huge snowstorm here last night, which left something like a foot of snow outside. Even with my aversion to the cold, I can’t resist that kind of potential for fun, so I got bundled up, (literally, two or three of everything), and went out. Within about 5 minutes, the tips of my fingers started to tingle. I wondered about it, but ignored it, figuring my body would eventually adapt. Finally, after about 20 or so minutes outside, I couldn’t take it anymore. By the time I got inside, the pain in my fingers was so bad I had tears in my eyes; on a scale of 1 to 10, this was a 12. Thinking I had somehow managed to get some sort of mild frost bite, I de-gloved and noticed that my finger tips were white, with a hint of blue at the base of my nails. Ok, no need to freak out… Let’s just try to get warmed up. I ran cool water over my fingers. It felt HOT. Like, scalding, except that when it hit my palms, I could tell that it was, in fact nearly ice-cold. It took a while, but I was eventually able to (SLOWLY) turn up the temperature of the water enough to get my finger tips back to something resembling normal.

That was nearly three and a half hours ago, and my finger tips are still pale and tingly. Not quite numb, but definitely tingly. *Side Note: I know that Google is not necessarily the best place to go looking for answers, but #1, I am, for all intents and purposes, (except serious emergencies), snowed in and #2, I have previously come across several articles on Raynaud’s Phenomenon and it’s relationship to Fibromyalgia.* So, I did some research online and found that not only is Raynaud’s very common in people with Fibromyalgia, Lupus, and other related diseases, it can be “unmasked” as a symptom by weight loss… Suddenly the pieces fit.

I’ve been “whining” for months that my weight loss has made my cold tolerance even lower than it was to begin with. During that time, I have noticed my fingers, toes and lips turning blue after being out in cooler weather, (basically anything below 60 degrees). I blamed it on the weight loss and continued on my merry little way. Upon closer inspection, it would seem that my inability to tolerate the cold was quite possibly part of Raynaud’s Phenomenon peeking through the veil of other symptoms. My weight loss, which is at a total of 80 pounds since 2006, has simply moved the curtain aside and allowed Raynaud’s to poke it’s ugly little head out.

Seriously, why is that every time I feel like I’ve got a handle on things, something else has to pop up? I know that things could be so much worse and I know that there are many, many other people out there who have been dealt an even more wretched hand than mine. I just find the whole thing so disheartening sometimes. It’s really hard to stay positive and upbeat when you feel like there are evil clowns waiting to jump out at you at every turn.

Ok. I am done whining about it. In all reality, this doesn’t change anything. The only thing that has changed is that I now know the name of another symptom. As appealing as hiding in a dark, (warm!), corner might sound, it’s not going to happen. I am going to focus instead on all of the wonderful, amazing and totally awesome things I have in my life, like: love, friendship, shoes and chinchillas.

“Just keep swimming”.  

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A bad day, made awesome!

A few weeks ago, I had a horrible day. I mean a truly awful day. Not because I was in pain, but because I had a full blown, five alarm panic attack, which is not something I deal with very often. I’ve had them before, but they’re usually few and far between. This one blew all the rest of them completely out of the water.

Have I ever mentioned that I am absolutely terrified of car accidents? I can’t even watch crash scenes on TV, I cringe and hide my eyes every time. Seeing them in real life is incredibly stressful for me, and usually results in a serious pain spike, sometimes even an all out flare up.

You may be wondering why I’m so freaked out by car accidents, so let me explain…

My first major (and worst) accident happened when I was 17. Those of you who have been following my ramblings may remember me talking about it once or twice in other posts. This is the accident that supposedly triggered my Fibromyalgia. I don’t remember much of the accident itself; all I can recall is that I was going around a bend in the road, I took the turn too wide causing my front driver’s side tire to slip off the edge of the road. I over compensated and my last actual memory of the incident is me saying “Oh shit!”.

When I came to, several minutes later, I was in a field on the opposite side of the road from where my tire slipped, facing the road. I was later told that I had somehow managed to flip the car end over end no less than three times. In the process, I hit my head hard enough to black out and managed to break a vertebrae off the back of my neck. (Incidentally, if you’re going to break your neck, that is the “best” way to do it).

When I regained consciousness, I remember seeing myself in the vanity mirror, and seeing blood all over my face, which caused me to black out again. The second time I came to, I couldn’t tell how badly the car was damaged, but there was definitely smoke rising from the engine compartment. A good samaritan was trying to get me out of the car, but I was too afraid to move because of the excruciating pain in my neck/back. I told him that unless he could see flames, I wasn’t going to move. Let me just say that that was one of the hardest decisions I have ever had to make: get out of the car and risk being paralyzed/killed from moving a broken neck or dying in a car fire.

My little brother, who was also in the car, thankfully made it out completely unscathed, for which I am eternally grateful. The officer that arrived at the scene told my parents that neither of us should have made it out of that crash alive. He was actually so stunned that he decided not to charge me with any violations.

That is just one reason why I am petrified of car accidents. Since that accident, I have totaled two additional cars and narrowly avoided totaling a third.

The second accident occurred during a down pour and was caused by another driver’s stupidity (someone decided to make a left in front of me, and due to the slick road, I was unable to stop in time). I have no explanation for the third accident, all I can say is that it occurred right around the time that I had a bad reaction to a new combination of meds to treat the fibro; in case you’re curious, this particular combination of drugs literally caused me to start hearing voices in my head. Not cool.

A few years went by before I had my next accident, which was due to heavy traffic and more driver stupidity. I am happy to say my car survived, although she spent over a month in a repair shop.

Needless to say, I have some issues when it comes to cars. I have never actually been diagnosed with Post Traumatic Stress Disorder, (PTSD), but it’s probably a safe bet to say that I do suffer from it. (Actually, while writing this post, I decided to a bit of research into PTSD, and I’m seriously thinking I should talk to my doctor about it.)

I digress, back to my “terrible, horrible, no good, very bad day” (thanks to Judith Viorst for that phrase!).

Two Tuesdays ago, I had to run some errands. It started raining almost as soon as I left the house and continued to rain all day. On my way out, I think I must have passed at least two car accidents on the side of the highway and narrowly missed being in a third myself. Not a good start to the day. I made it through my errands and then, on my way home things got worse.

It was pouring rain and in typical Virginia fashion, everyone suddenly forgot how to drive. I was about 20 minutes from home, but it took me over an hour to get there. During that hour or so, I passed by one wreck involving an SUV with a flaming car stuck in it’s backseat followed by the remains of a second accident that left one car crunched accordion style, facing oncoming traffic.

My chest had tightened up and breathing had become much harder since I passed the flaming car, twenty minutes of stressful driving had not done me any favors. As I came up on the second accident, with it’s fire trucks and ambulances, my brain shut down. I literally have no idea how I made it home from there, it’s almost as thought I blacked out, without actually losing consciousness, (that’s a scary thought).

Almost immediately upon entering the house, I lost it. I barely made it to the bathroom before losing my lunch, breakfast and probably part of the previous night’s dinner as well. I ended up in a crumpled, tear streaked, hyperventilating heap on the bathroom floor. Not a pretty picture, as I’m sure you can imagine. I eventually managed to drag my sorry butt into bed, where I spent another good 30 minutes bawling my eyes out. It wasn’t until I ran out of tissues that my rational brain finally decided to wake up and force me to look at what I was doing.

Yes, I it had been a horrible day, but what good was it doing me to sit there and dwell on it? None. I’m not saying that it’s not ok to cry or even have a mini meltdown when you need to. As a matter of fact, I believe it’s good to cry. Cry your heart out if you need to, you’ll feel better for it, just don’t sit there and continue to upset yourself once the tears have run their course.

It took some serious will power, but I made myself get up, get dressed and go for a walk. Once I got outside, I made a decision: if my body wanted to throw a fit, I was going to give it something worth freaking out over, so I ran.

My “walk” turned into an impromptu 8k trial, which I am proud to say went amazingly well. I not only achieved my best time ever for the total 8k, (54:29), I even beat my best mile time, (10:29). I managed to take a totally rotten day and make it awesome, simply by refusing to give in to the pity party my mind was trying to throw.

For the record, I am not recommending that anyone else go out and try to just run 5 miles. This is something that I have been working up to and training for! Go out, enjoy some fresh air and just get yourself moving. You will be amazed by the impact that a little bit of physical activity can have on your mood. 🙂

It’s never too late!

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Alone

Maybe it’s just me, but nothing creates a feeling of total isolation quite like pain. It’s 5:38am and I’m not writing this now because I woke up early. I actually haven’t been to sleep yet, thanks to the sharp, surging pains currently taking over the left side of my body.

I decided to move out to the couch since I can’t seem to get comfortable in bed and it didn’t seem fair to ruin anyone else’s night sleep just because my own body won’t cooperate. So, here I am, trapped on my own little private island of misery. The meds aren’t helping, (big surprise there), and to be perfectly honest, the only option I have at this point is to try to ride out the storm by writing it out.

I wager that I’m not the only fibro-fighter out there who experiences this lovely facet of the disease. Despite the overwhelming feeling that I’m imprisoned in solitary confinement, I take comfort in knowing that I’m truly not as alone as I feel right now.

It sounds trite and even a little cliche, but I can’t put enough emphasis on how important it is to remember that no matter how horrible we feel or how terribly bleak things seem, we are not alone. There’s an entire community of fibro-fighters out there, we just have to do what we can to support each other.

By simply clicking the “Follow” button on someone’s blog, or the “Like” button their page, you can let others know that they are being heard. It’s truly amazing how much that one little action can convey. Every time I get the notification that I’ve got a new follower, it reminds me that I am not suffering alone. There are others out there who can relate to my struggle and who can share in my triumphs, no matter how small they may be.

Since I’m awake anyway, I’m going to follow my own advice and send my love to some of my fellow fighters. I hope the rest of you had a better night than I did!

Keep fighting!

Happy New Year!

I can’t even begin to tell you how thrilled I am to be able to say “Happy New Year” and actually mean it. That’s not to say that I wasn’t happy last New Year, but it’s not the same kind of feeling. Last New Year, I was surface happy; the kind of bliss that comes from pretending your problems don’t exist. This year, however, it’s more of an all-encompassing kind of bliss. 2013 was, for me at any rate, a total train wreck; especially the first half of the year. I did manage to pull myself together there near the end and I am able to start 2014 with a clear mind and a light heart.

I’m not saying that all of my problems have been magically solved, (I wish!), but instead of ignoring them, I have faced them head on and found that they’re not nearly as bad as I had originally believed. It’s like those monsters you used to see in the dark as a child; once you turned the light on, you could see that instead of a snarling, child-eater, it was simply a jumble of toys/clothes and that all you had to do to defeat the “monster” was clean up your room. Not a pleasant task, but certainly much less hazardous than having to actually fight off a creature with sharp fangs and tentacles!

This time last year, I felt sure that my world was ending and that my life was going to be utterly ruined. While it’s true my world as I knew it did in fact, end, my life is far from ruined. I found the main source of the negativity in my life, which as it turns out, was myself, and I then I found the strength to make the changes I needed to make. Once that ball was rolling, I was able to cut out the people in my life who were fueling my negative outlook. My friends list may be a bit shorter, but at least I can say that it only contains people who love and respect me for being exactly who I am.

Happy New Year, everyone! I hope you make your 2014 a great one!

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