Monday, April 11, 2011

Prednisone Was God

I started this unpublished and completely private blog about my chronicles in surviving and living with Fibromyalgia last year. Then I had 2 strokes in July, 5 months later. The treatment was Prednisone, high dose, for about 6 months. Apparently during that time I went all kinds of crazy. I published and started promoting my blog on Facebook. People started reading the blog and felt understood and inspired. I formed a support page where folks could get to know others with Fibromyalgia and feel that understanding, not be so alone. See my page got too small to contain the chatter, the support, the friendships that were forming. That is how The Fibromyalgia Fun House support page on Facebook came to be. We shot off like a bang, already having a core group that built the page up with their fun and laughter. Hilarious points of view exercised in the absurd. Support and acceptance.  Assigning our pain to different shades of purple in an attempt to simplify the explanation process. Discovery of common ground many had never felt before. The numbers grew quickly. And as the numbers subtly adjust up and down they kept growing. The hits on this blog kept rolling. And this whole experience touches me so deeply that I decided we needed to form a patient united awareness campaign. And high on Prednisone that is exactly what I set out to do. 

I recall this last year with a haze of mania and frantic energy over the last half of it. See the prefatory of all this was the incredible gift I was given in the hospital. Truly my life, and ability to function in life was spared a possible multitude of complications. I was so overwhelmed, so thankful for my mere existence that I took that life and surrendered it completely to God. I stopped putting plans or limits or restrictions on the direction it was going. I simply lived in faith and let goodness flow. I figured God had spared my life for a reason, left me intact and functioning, and I set out to accomplish that reason! Marching one step ahead from behind myself, racing through life I blogged and Facebooked and whipped up this awareness campaign where we, as a united patient body, with our dozens of differences among us, stood strong in our 1 uniting factor to push for awareness and a better quality of living for ourselves. That is The Fibromyalgia Crusade. I believed very deeply that what I was doing was so good, so necessary, so real that I threw everything I had into it and now 2 months off Prednisone I am flat and deflated. Confused and not really sure where to go next, because I think the whole intention of this mission is entirely off course. 

See its supposed to be about the blog. And from the blog comes the support page and Crusade. Both are equally necessary in this equation. But now I feel it is all about the Fun House, which is full of fun new friends that maybe don't know any of this, and the blogs are secondary and the Crusade is losing steam. And I need to turn this boat around, take us back to our original intention. Because I don't know to steer this one in the direction we are headed. And as I cried all of this out to my husband this afternoon I suddenly looked at him with a moment of clarity and said "What if this is not the plan for me? What if that was Prednisone fueled mania and what I took for signs and direction was random occurrence? What if it was not God, but it was Prednisone?" But as I am writing this out I am getting a small lift in my spirit. A little stirring. And I feel the stubborn me rise to the surface and quiet these chirping notes of self doubt. For in expelling the troubles deep in my soul I can deal with them, I can conquer them, I can overcome them. So I would have to say then no, I did not mistake Prednisone for God. I followed the path that sprung up in front of me and regardless of if I am on steroids or not, this is the one I will continue to walk. Now I just have to find the energy!

Thanks for joining,
Leah

4 comments:

  1. Leah,
    How I understand this fire that was fueled during your prendisone experience, I went through similar when I was on suboxone and cleaned out my system. Even with the struggles, I was like a juggernaut moving to benefit others who suffered as I had and am still. I went and saw my congressman, help with fbs group and clinging to God. I commend you for writing this out, for identifying and accepting what is happening. I hope that you find a new way of approaching your fibro and it is a cure. I truly await healing for not just myself but also the masses of others suffering so greatly. Thank you Leah for your honesty.

    ReplyDelete
  2. YOU have done this. Your blog did not just happen to come to me as I randomly, frantically tried to google everything about fibromyalgia. It came to me because YOU have this purpose. It's not the meds that made the blog and it's not the meds that made you you. Obviously you know that and I have no idea what you are feeling being off of the meds, but Leah you are an inspiration and whatever you need... rest, relaxation, a break... or whenever you are ready to GO we are still here. I hope this is encouraging and not coming across wrong. I think you know me well enough by now to know I support YOU completely. Not just because you made a place for us to connect but because your blog gave me solace and still does every damn day. You are a trooper and you have helped those of us out here to commiserate and cheer each other on. You are honest and we can all relate and see ourselves in your shared story. I love your blog. You have accomplished so much and if those meds gave you aid in that time of birthing a new life in this Crusade then praise God for that. It set you on your course but you have done all the work and that deserves applause. <3

    ReplyDelete
  3. I have been wondering if there were any that took Prednisone as a maintenance/preventative daily dose; or, I read where a lady takes 20mg p/day for 3 days, to stop a flare. I take 5mg a day as preventative and have not had severe flares in 2 months...anyone else have experience with Prednisone and Fibro?

    ReplyDelete
  4. That's the info I was reying to figure out. I took Prednisone 30 mgs for 4 days then 20 mgs for 5 days then 10 and that was it. I felt pretty good towards the end and then I didn't so Dr put me on 2 1/2 but it's not helping.

    ReplyDelete