Monday, September 10, 2012

Just don't talk about it!

"Just don't talk about it!"

I tell myself that nearly everyday. If I don't mention it, if I don't say a word, if I don't make it an issue, then it isn't, Right? Wrong!!

For nearly 4 years now, I've been struggling with pain, daily! It started when I was pregnant with my youngest. Of course at the time I chalked it up to being the comparable size of a beached whale. But being pregnant wasn't my first Rodeo, so to speak. I figured everyday I got closer to giving birth to my last baby, the better I'd start feeling and I would finally being pain free. But this wasn't your normal "pregnancy pains and discomfort." Knowing that my doctors would, all, make 101 excuses for me I never really peeped a word. How could I?

Just a few short months after my youngest was born, the pain never went away. The pain that originally started in my heels, had migrated to my hips. Some days it was so unbearable, that I would find myself begging for mercy to the Pain Gods. I'd had enough and finally talked to my primary doctor. Of course he listened, only briefly, did a few range of motion tests and when I would break down in tears, threw some Motrin at me, and told me to get some exercise and do stretches. Of course, at his mercy, I did.

Another month or two would pass and the pain intensified. My headaches (which I was already prone to) would get worse. Back to the doctor I go. By now, he's tossing around the notion that maybe I'm just depressed. I mean, I had 4 kid's, a deployed husband and thousands of miles from any sort of family. I guess everyone is suppose to be depressed about it. Sure, there was a small part of me that was depressed, what military wife isn't during deployments? But it certainly wasn't medication worthy depression. And most certainly, in my heart of hearts, not the reason I was in so much pain. I refused anti-depressants for many reasons, including the fact I was breastfeeding my 5 month old infant. Plus, I didn't feel like being in a medicated coma with a perma-grin for the next 12 months. It would have been a lie and most certainly wouldn't have helped the pain. I knew I wasn't that depressed and there was (and is) something wrong.

I felt like prey, just waiting for the fierce predator to strike and do me in. I went rounds with my physicians, I wasn't looking for pain meds to keep me doped up and pain free. I just wanted to be pain free all together. I wanted them to do their job and fix me. I didn't want to wake up in the morning wondering if moving was going to be challenge. I practically begged, on my knees, for someone, anyone, to please just make it go away.

Yet, here I am a couple years later, still in pain. I gave up talking doctors, that I actually quit going all together. It was a lost cause in my eyes. I was doomed to be in pain forever. I don't think I've ever learned to manage my pain, it's a struggle everyday. I hide behind this facade that everything is "okay," when deep down I know it's not. It finally takes a "come to Jesus" moment at the doctors (a new one by now), before they actually feel like doing something, or at least attempting too. More tests are ran, blood drawn, x-rays and Catscans. NOTHING! By some some strange microscopic miracle, this doctor actually took it upon herself to finally say I have: Fibromyalgia. It's purely a rule-out theory diagnosis. Lupus, Multiple Sclerosis, RA and myriad of other tests came back normal, for what that's worth.

For the last 4 months we've been trying different drug therapies. Unfortunately, none of have really helped in the slightest. I'm almost positive that even my doctor is at her wits end with trying to figure it out and ready to send me on to the next doctor.

Struggles...

I don't expect everyone to understand my daily struggles. The black veil I hide behind everyday. The dark cloud that seems to follow me around, ready to rain on me at any given moment, just like a scene at out some ACME cartoon. I know it sounds a lot like depression, but it's not. It's PAIN. Excruciating and debilitating pain, every single day.

In the mornings, you find yourself hitting snooze for the 342nd time, because you've only been asleep for 2 hours. 3 if you're lucky. You're afraid to move, even a smidgen, because you're terrified to find out which part of your body isn't going to function properly.You think:  "Will my knees bend today?",  "Ugh, my hands are incredibly swollen",  "My neck hurts and my head is pounding." to literally praying that moving is even an option, before you've even wiggled a toe. Yet, every morning I struggle to move, but know that I have to. I don't have a choice. I have four very beautiful children that rely on me every single day. But there I am, hiding again. Pretending to be okay. Grab my cup of coffee, my morning ritual of Motrin, Naproxen, or Tylenol  Take my newly prescribed Cymbalta that is suppose to help, but doesn't and my daily vitamins. I walk around with my fingers crossed that I make it the next four hours, till I can take another dose. I've even resorted to over the counter Analgesic Pain Patches.

Of course, I have better days. I wouldn't call them good or great, they're just a little better than the day before. It's a little easier to function, but even those mornings aren't necessarily a precursor to the rest of my day. Those days sometimes result in me having to have a personal pep-rally at the edge of my couch, vying with myself. Talking myself into walking upstairs to go to bed at a half decent hour of the night, and pray that I get a little extra sleep. It doesn't always work in my favor.

I've reduced my wardrobe to yoga pants and anything that stretches and moves freely with my body. Everything else hurts. Yes, putting on a pair of jeans literally HURTS. I can't even wear a regular bra for more than a few hours before my skin feels like it's on fire. This just isn't normal!!

There are days where I have to sneak away to the bathroom, to silently shed a tear or two, so my children and husband don't see me fighting the pain. The nights where I plead with whatever deity actually, just out of sheer hope, may be listening, to end it all. No, I don't plan on taking a long walk off a short bridge, although taking a long walk would be wonderful. It just isn't possible, not even physically most days.

I'm not asking for sympathy from anyone, I'm just asking for a little understanding. To many I may look just fine, not like the picture of what everyone thinks that someone, who is sick or in pain, should look like. I don't think there is just one picture that can even remotely describe it. Quite honestly, there shouldn't ever be and no one should ever question it.

Whatever this is, battling Fibromyalgia or not, it's a curse. Every day is a battle of will. Every day is a battle with myself to keep moving forward and not let it get the better of me. But, every single day that I struggle to be pain free, I struggle non-the-less.

"Just don't talk about it..."

We have to talk about it. If we don't, it stays a silent and debilitating killer; not of our life and every breath we breathe, but a killer of will and hope to find an answer. A killer for a cure. A killer to those that don't believe and ultimately a killer, someday, to be pain-free forever. All I know is, I would "kill" to be pain-free for even just one day!






1 comment:

  1. Dear Tanja,

    First, you have beautiful boxers. They look so peaceful sleeping, don't they...then one long stretch and a noisy, squeaky yawn and they're off and running! I was lucky enough to be loved by a boxer for nine and a half years until I had to put him to sleep (hardest thing ever) because he had a brain tumor.

    Second, I know how you feel...sort of. I don't have the constant pain that you do - which I am so sorry that you have to suffer through - but I have been through the countless doctors vists and have learned to hate the words "Well, I know what you don't have." everytime they run a test and have no answers. Mind you, the only time I was grateful to hear those words were when they were testing for cancer. It started in 2010 with a severe cough and turned into pneumonia, then brochitis then a severe lung infection after the hospital forgot to give me antibiotics after the bronchoscopy I underwent. I still haven't passed a lung function test. My lack of being able to breath and do normal things, like oh...shower, without getting winded or needing a nap didn't show on the outside in any way...I know the looks you're talking about. The "nothing is wrong with her, she's just trying to get out of doing things" look. On top of that, I do have depression. It's clinical depression, where your brain doesn't produce the right amount of chemicals...right now that is the only fight I am winning...well, I'm ahead by one point and it has the ball, but hey I'm still winning. You don't sound like you have depression at all...yes it comes with pain, but not like you are describing.

    I know this will sound trite and I honestly hope it doesn't upset you but...I truly believe that everything happens for a reason we just don't always get to know what it is when it's happening. To try and explain...going through my 4th miscarriage I couldn't understand why and it hurt...then later I had a moment of clarity and realized that while I went through the pain of each miscarriage, I wouldn't have to go through the pain of having to share my children with an abusive ex-husband. I would glady endure that pain a thousand times over so that no child had to go through what I did...it was bad enough that Hunter (my boxer...my bodyguard...forever my heart) had to go through it for a short time. I can't say that I know why you're going through this...maybe it is to show your children (who are beautiful btw) what true strength is. Don't chuckle or take anything away from yourself, you are strong. Most people would have given up by now and wouldn't get out of bed children or not. But you do. There's a quote I like, that I remind myself of when things really get me down "Anyone can give up, it's the easiest thing in the world to do. But to hold it together when everyone else would understand if you fell apart, that's true strength." (Unknown)

    I'm sorry, I've kind of gone every which way with this note...my original intent was just to let you know that someone understood. I know how much that helps me (just reading your blog helped...finally, someone understood) and I wanted to help you in some small way if I could. I have all these things in my head to say but if I let them all out it might take you all day to read this. lol Like I said before, I firmly believe everything happens for a reason...I went online looking for images of a phoenix because I had had this epiphany of a tattoo image and found your blog.

    I really should hush so you're not spending your whole day reading... I saw your Razorback Hawaii license plate...I don't know if you're still in Hawaii, but if you are and you'd like to talk, need someone to listen or anything, just let me know. My email address is justhntrnme@gmail.com ...I know somedays I just need to vent to someone I know understands or has an inkling...

    Keep strong!! Thank you for sharing.

    Sincerely,

    Jennifer

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