Thursday, August 12, 2010

Ode' To Prednisone

Oh Prednisone, what a double edged sword you are! I am taking you to keep the blood vessels in my brain open so I don't stroke again, but you are doing so much more for me than that. First and foremost, Fibromyalgia has taken a vacation from my body and I am in ecstasy! No pain, no stiffness. I can crack and pop my back with the slightest twists and turns. I can go go go...but therein lies the problem...I am a bonafide crack-head! I am manic and hyper and prone to fits of rage. I can't sleep or even really sit down to watch TV without Xanax, and the manipulation of my body with all these medications seems so wrong. I am only taking you for a short while, for if I can get through the first 12 weeks post-Vasculitius RCVS without another stroke I am in the clear (they say). But you are consuming me in the process! I am shaky to the point that applying eye liner is impossible, so how am I going to go back to work? I am bouncing my legs, feet, something at all times and am typing so fast I cannot even keep up with my own thoughts. If I don't eat it magnifies this all the more, and I really don't want to gain weight on you, having just lost the 30 lbs. Lyrica packed on. Oh Prednisone, my hated friend...

As I am networking with fellow Fibro-friends what strikes me is how many different and vast problems we all have. Fibromyalgia is but 1 of many diseases for me, and it seems to be that way for most of the rest I am chatting with. Can we take a step back and look at the bigger picture? The total health cycle of your body is breaking down...why? I credit much of modern society's thoughts and ideals, practices and lifestyles with this, and maybe it is attacking the weak first? Is that who we are? Are we the vulnerable, genetically or otherwise? Is this a Darwinist tweak in the survival of the fittest? No, I don't think so. I believe we are the sensitive and real. We are not capable of existing in the modern-day madness that comprises life today and our bodies have forced us to take a step back. We are the first that this materialistic-fake-consumption-ego-competitive lifestyle has offended. And by virtue of pure necessity we are forced to withdrawal. Withdrawal from the type-A high-stress lifestyle, the super achievers who don't sleep enough and don't eat real food enough and don't exercise enough and simply don't feel enough but expect from ourselves beyond-human results. We are forced to shed those habits and expectations. Only when I found peace with my true-self was I able to begin healing. The pain is overwhelming and makes us SO angry! Why me? What do I do? Is this really going to take me down? For in the real world we all need money to survive and most are required to work for it, but who can work with this pain, this unreal and often not-believed pain? Who can be a happy spouse or supportive parent or excellent employee or a confident and contributing member of society with pain and sickness coursing through every inch of our beings?

So take a step back with me, and let's take a deep breath, and see if we can't start to love ourselves again. No more criticism of not getting enough done. Rejoice in what does get done. Re-define your expectations and be kinder and gentler to yourself. Simplify your lifestyle and surround yourself with those that love and believe in you, and lose the rest. Keep searching for that 1 doctor that will understand you and work with you through the myriad of medications until you find your right cocktail. Eat well and relax well and medicate the pain away if you have to, it's okay. Give yourself permission to suffer and hate it, and try to reach deep down inside and find the fight of your life, for that is the only way to get better.

Thanks for joining,


  1. The last paragraph was especially inspiring. I will be printing it out and taping it on the wall next to my bed to read when I go to bed. An excellent reminder of what REALLY matters at the end of the day. :-)

  2. Thank you Carolyn! I should do the same myself, for it is not easy to stay positive as you well know. Cheers!