Hello everyone! <3

[Raegan]

Hello fellow warriors!

My name is Raegan. I'm 29 years old from Buffalo, NY. I've been suffering with fibromyalgia daily for the past year, but I've had symptoms since high school. I was diagnosed last fall with fibromyalgia and sleep apnea, and recently with selective IgA (immunoglobulin A) deficiency. I'm lead to believe, as many do, that fibro is closely related to gut problems. I however only have some college biology and chemistry under my belt, so I don't claim to understand it fully. :???:

A bit about me: I'm an artist. I'm a musician, designer, craftsperson, photographer, etc. I'm working towards a profession as a furniture designer and builder, but fibro has somewhat derailed my schooling and progress on the matter. I'm also transgendered. I was born biologically male but I identify generally as a female. My progress on that matter is slowly ongoing. Many would call me a hippy, and I do worship the earth and its beauty. I'm a pagan, and eventually I would like to leave civilization mostly behind. That's a story for a different post however.

So this brings me to the reason I'm here. I'm lost. I look at the words I've typed and know that I'm simply talking about a dream that is quickly sliding from my memory. The pain and fog day in and day out keep me here, stuck, and doomed to disappoint not only myself but those around me. Is that what fibromyalgia is? Does it just take the things that you love, your goals and passions, and just strip them away one by one? I try to cope, and the fact that I'm here reaching to you shows me that I can. The idea that this forum is a community of people like me, that feel the things I do, that suffer like I do; it shows me that people can cope, so I can cope.

Anyways, thank you for reading my long and emotional post. I look forward to talking with you all.

 

[Alejandro V]

Hi Raegan,
I’ll cut straight to the point. I read your post and it brought tears to my eyes. What you said about fibro taking the things you love, disappointing you and your loved ones, and the fog, the goddamn fog keeping you stuck. It brought tears to my eye, because I couldn’t have said it better. I am now compelled to write a long-winded answer, and I hope you’ll want to read it.

I’ve also lost so much to fibromyalgia. As I grew up I always felt unwell, uncomfortable. I felt I had to “pedal” much harder than everyone else just to do the same or a little better than them. My symptoms got progressively worse and there was no diagnosis in sight.
At some point I was studying Physics, I got a full scholarship to study at a college in Amsterdam, and now… I can’t study anymore, can’t hold down a job and stay at home all day supported by my parents.

If any one of us sufferers of this horrid affliction starts to ponder about our losses, the inevitable result is melancholy.

BUT…

I am still here.
Some layers may have been stripped from me, but my spirit, my innermost voice is still here. In these years of convalescence I have matured more than in all my life. I’ve grown so much in strength and perspective, and my dreams and hopes are bigger than ever.
You seem like a beautiful person, full of love to give, with the potential to receive so much from others and from the beauty in the earth. This time, if nothing else, will allow yourself to find the best, most you of yous. That is coping, but there I also believe in hope…
We have the enormous privilege of living on the edge of time. We live in the present, and that makes us able to witness (or create) things that have never happened before. We live in the moment alongside science, alongside advances in medicine and understanding. My dreams are my refuge, and you could do the same.
Keep dreaming, and dreaming big, ‘cause someday you might find yourself free from fibro, larger than life, and you will demand yourself to fly highest.

 

[Raegan]

Thank you Alejandro. Thank you so much for your response. I would have replied sooner but I have memory problems and honestly didn't remember that I wrote this post. Since I made that I've been working on finding ways to do something productive even on my off days. I've been sorting through my photography catalog (2011-present) and I think I'm going to put together a website with my best portrait work. Hey, maybe freelance photography can work with my illness. I'm also considering seeing a disability lawyer to figure out how to get financial help.

It seems that my outlook today is better than when I posted this, although I doubt I actually feel better.

And you are so right. Before I went into design school I was pursuing a degree in biotechnology. I can't even begin to imagine the medical technology we will possess 10 years from now. Maybe one day we can all live life without illness. That chance is definitely something worth sticking around for.

<3