My (Almost) First Fibro Birthday

Hi everyone!

It’s my first blog post for FighterZine – I’m so happy to do this great thing! I thought I’d share some information about my FMS Birthday. It’s almost here. On May 10, 2011, I was finally diagnosed – after 16 years of struggle.

All those years of thinking that I was crazy and people thinking that I’m lazy – ok,  the outside people probably didn’t think I was lazy. (Just my then husband and the kids), But I felt lazy – especially at home. I never said ‘no’ to anyone outside the home. The kids school needed 500 bags of popcorn, no problem! A class party needed to be planned and carried out – I got this! Cheerleaders needed a coach – I’m in! My home life was a different story. I could do anything for anyone – just not myself or my family. I would sleep so often. I felt depressed from all of the pain I was in. I saw so many doctors. Every one of them either said it was age (I was under 30 at that time – Thanks Doogie Howser!) or I was depressed. They didn’t try to push me to talk therapy – only drugs. And no other blood-work.

Last year, my now boyfriend couldn’t take seeing me in pain anymore. He made me go to his doctor. What a brilliant move on his part – and I feel smart now, too.

After years of not trusting anymore doctors, I finally found one I could trust. He first ran all kinds of blood-work to rule out any underlying conditions that I may have. All negative. Great, right?! Or so I thought. After four visits in a month’s time, he finally diagnosed me with FMS/CFS, RA, Raynauds and Nocturnal Partial Seizures. I had answers! What a relief!

Wait.

What?

I have all these things and I have no idea what they could potentially do to my body – and no cures! Awesome.

What was my first move after filling prescriptions? The internet, of course! I wanted to educate myself and I wanted to do it quickly. I hopped on my computer while laying in bed and read everything I could on the subjects. I found out that I was considered a “Spoonie” – of course I read the story! I found great support groups – all online because so many of us are stuck at home. And I found that I’m not crazy! It was bittersweet to learn everything I did. And all of it happened just two days before Fibromyalgia Awareness Day. I’d only been diagnosed for a couple of days and already sporting a ribbon!

I kept the Fibro and other illnesses to myself – until I needed a cane just to be able to work one day. I’m a film and television producer. I had a casting call out of state and needed to be away from my precious bed for an entire week. I thought I could fake it through. I didn’t want all the men that I worked with to see me as ‘weak’. I’m strong. Or I used to be. But I still could do my job. I used my new pretty pink cane that first day. Not one person asked me what was going on. Maybe they were embarrassed to ask or maybe my positive attitude through it all kept them from asking. At the end of that week, I sat down my producing team and told them all that I was dealing with. I didn’t do it for sympathy. I did it because I knew, after that difficult week, there would be days that I’d be working from bed and I didn’t want them to underestimate me or my skills. They were all positive and supportive. (I work with some incredible people!)

I pushed through the drive home and collapsed. For two weeks.

I learned my limits quickly. And I learned to listen to my body.  I went through my depression, pity parties, positive changes (diet, exercise, etc.) and I went through friends. I couldn’t keep my plans. I was unpredictable, at best. I store up my energy for work and visiting with my (almost adult) children and boyfriend…Oh, and those doctor’s visits.

My family is understanding. They’ve even steered people my way that have just been diagnosed, even telling them I have this ‘under control’. HA! I should be in front of the camera instead of behind it – I’d win an Emmy faster than Susan Lucci! But they are supportive and helpful.

I’m now fighting to work the most minimal of hours while maintaining some sort of income. My work has suffered. My figured has suffered. (30 extra lbs. – Thank you meds!) And some days, my dignity. But I’ve found that my truest of friends are still here. I’ve come out LOUDLY in the film community about these illnesses and I don’t shy away from the pain. I embrace it. It’s mine. It’s unpredictable – just like my personality. It’s part of me now. Some days, like today, I can see it as an adventure.  I’m still striving just to get out of bed some days while others, I can hit the gym, go shopping and work. I get my morning text from my boyfriend, “How are you feeling today?” He gets the same response every day – “Give me another hour and I’ll let you know”.

I guess it’s adventure for those around me as well.

Happy First Fibro Birthday to me! It’s another month away – but I’m planning on celebrating (ok not celebrating Fibro but celebrating life) on a day when I feel good…I may not be able to move that day. If that’s the case – I want a cake – served right in my bed!

Gentle Hugs to you all!

Paula

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2 comments

  1. As a retired military veteran and widower now I have always said it takes a very special person to be a military spouse. Not just anyone can fill those shoes. Sorry it took so long for your diagnosis but also sorry you had to hop on this boat. I was diagnosed 10 years ago just after a three level fusion in my neck caused by degenerative disc disease. I know your anguish of feeling helpless, lost, lazy, worthless and inept. These days I have more bad than good. Continually getting worse too. All I can say is welcome and good luck. Oh and a soft warm hug back at you. Hope you have a pleasant week. Clark or CC

  2. Fantastic post! Love your positivity! Keep that going and half the battle is won!! Fibro may be a life sentence, but the quicker we are able to ‘make peace’ with what is going on with our bodies and learn how to manage our disease and not just the symptoms, the better off we will be!
    Happy almost Fibro birthday! Enjoy your cake and the awareness day! I know I will be doing the same! 🙂

    All the best,
    Melissa

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