Friday, August 13, 2010

living with fibromyalgia...

Is there something so personal in your life that you don't even like to talk about it? For me it's something I've been living with since I was 15 years old. Somehow over the years I've thought that if I keep it wrapped up tight inside of me, like a secret, that maybe it will go away. The sad news is it won't. The good news is that as I'm getting older, I realize it's not always the healthiest thing to keep things locked up inside tight. Sometimes you need to let things out, even the really personal things. All week I've been thinking about writing this post, unsure of exactly what to say, or if I was ready to get something so personal, so private written out for whoever wants it, to read it. Then the thought occurred to me, that maybe if I am able to help someone out there understand better, sympathize more, or realize a little more, than maybe opening up this private part of myself might just be worth it.

When I was fifteen years old, I went through a traumatic and dramatic break up with my 'first love' (or so I thought at 15 years old). It wasn't your ordinary run of the mill break up. It was the kind that kind of shatters a person... makes them question life, and steals their innocence. I found out that the boy I loved was gay. I'm not going to go into all the details. They aren't real pretty.... While I could, there really is no reason to. But, you could probably see how this sort of news might shatter a young woman to her core.

While going through this traumatic/dramatic heart wrenching pain, I started developing other pain. Pain so severe that there were days I couldn't get out of bed. Days I couldn't move my neck, days I couldn't make a fist with my hand, days that just walking hurt. I'm pretty sure my parents were beside themselves. At first I'm sure they thought I was depressed. I probably was. But, over some time, I think they realized it was more than heart break, depression, or teenage angst. My mom decided to take me to the Doctor. Of course this was a little over 15 years ago, and I really think the doctor thought I might have been making the whole thing up for attention. With time things worsened. My mom was persistent... thankfully. We kept going to the doctor, trying new things, until finally I was sent to a specialist which could finally run the tests needed to find out what was wrong with me. It was fibromyalgia.

Once, we found a diagnosis, we were able to try new things. Different therapies that would help. We read, and found out ways to reduce my pain, and with time things got better... Throughout the years I would have flare ups - stress being the thing that flared the pain the worst, just like what started it all. But for the most part from the time I was 16 until I was about 24 or 25 I was able to manage the pain with the exercises, diet, and stress control that I had learned to make part of my life.

Sometime between 24 and after Meritt was born things grew increasingly worse. During my pregnancy with Meritt there were times the pain grew overwhelming. After Meritt was born it grew worse and worse. Add in some postpartum depression and I was entering a full melt down. Two kids, trying to work and run a business with two kids, a house in remodel mode, and other stresses of life proved to make my disorder take over me. By the time Meritt was 6 months old (and twenty whopping pounds) my entire left arm went numb with shooting pain, tingling, and a stabbing pain in my left shoulder that took over my life. It was pretty much all I could think about. It was near impossible to be myself, and wear my super woman cape with all that I was physically going through. I tried my very best to wear my happy face, but it grew increasingly exhausting and overwhelming. My doctor ran every blood test known to man, I had MRI's, and physical therapy 3 times a week. Not able to find another reason or answer. Unfortunately the physical therapy made things worse...

After much frustration, time, and pain, I convinced my doctor to let me try some new medications that had just been approved for fibromyalgia. That along with big life changes, started me on a road to recovery. After trying three different medications I was finally able to find the right one, and after more support from my mom (and dad, and husband, and friends) letting me a have a new normal at our business, and home, things got better. Not 'normal' or 'perfect' but survivable.

That was two and a half years ago. Early this summer at one of my regular check ups with my doctor to see how I was doing, I convinced him to try and let me get off my medication.

This is where we get to the 'living with fibromyalgia' today. While my doctor didn't think it was a great idea to give up the medication that I was finally able to find to relieve my pain, he also understood that at my young age I wasn't satisfied with the idea of being on medication for the rest of my life.

I started trying to wean off the medication by taking my pills every other day. The day I didn't take my medication, I was so sick, I could hardly survive my day. I had migraines, tingling throughout my body, dizziness, and disorientation. When that didn't work, we decided to try a lessened dose over time.

That brings us to today. Today, I am on a lessened dose, and the pain is overwhelming my body. My hips ache like I am an old woman, I wake up with stiffness in my hands and feet so bad it makes me want to cry the minute I wake up. My neck is tight, and my back aches like I have been in an accident.

This week has been really frustrating. For those of you who know me well, you know I'm stubborn. I don't like to give up. Going back on the meds feels like giving up. But the pain invades me, and I am not good for anyone in my life, even myself. So, after much prayer, and some wonderful talks with my loving and supportive husband, I have decided to go back and talk to the Doc on Monday, about a new plan.

This thing I live with, makes me mad. It makes me want to fight it and kick it's ass. Most days it kicks mine. It makes me sad to think it's never going to go away. It makes me mad that I will always have to deal with it. It enrages me that I can't keep it secret, wear my happy face, and it will disappear. But, it's my reality. It's life. I'm still blessed. It doesn't steal my amazing life. God's Grace abounds in my life daily. It can't tear me down, I just have to learn how to adapt. How to talk... how to let it out. How to communicate with those I love, so they know how to love me back. So, that's where we are today... tomorrow is another story.


Myya said...

What a corageous post. Good for you for posting it. I'm sure one day you will kick its ass, I hope that day comes soon :)

Krista said...

This was a very brave post. It's hard to admit when we struggle but it's so important to reach out-even to a virtual community-for support. It's a key piece to managing your pain I think, that support that your family and friends can give you. I totally understand the desire to get off the meds but maybe this isn't the right time for that, perhaps the next try will go easier, I think it's smart that you're listening to your body and reopening the conversation with your doctor. Right now it's important that you take care of yourself to the best of your abilities so you can be the great Momma you are to those girls.

ShArM said...

I wish you best of luck and hope you stay courageous.. keep fighting, pain makes you a better person, keep fighting for your children's sake,I can't imagine how hard it is but I really hope you get better and live peacfully.

Dominating Influences said...

Reading this post reminds me of myself a few years ago. I was on enough meds to choke a horse because of the migraines and 'bone' aches. A friend of mine suggested that I take wheat out of my diet "for her" for just a week to see if it made me feel better. I can't tell you the difference this has made in my life. I hope you find what is causing your pain, and know there are others out there that know it is real pain.

The Sellers Family said...

I randomly came across your blog as I was updating mine. As I was reading about the crazy life of motherhood (I started my blog for the same reason, I never started a baby book for my little girl) I saw this post. I too live with fibromyalgia and it is never fun. I have a milder case then yours I believe. I wanted to give you my support in your fight against it, I know how hard it is when you are in pain and your child just wants to be held.

The Gwyn family said...

Sweetheart, U and I should TALK...I have been doing this same thing ONLY different and MAINTAINING my lifestyle with HIGH doses of medicine..for about 5 years. Over 200 MG of HEAVY narcotics and I too know what it is like to feel you have GIVIN IN...or givin up and just followed...I was best friends with someone about 15 years ago...WHO is gay now, and I maybe could help you if you ever have any questions....Talk soon...Facebook me anytime!!!