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. Fibromyalgia has taken a vacation from my body and I am in ecstasy! No pain, no stiffness. I can snap crackle pop my back into place 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 taking 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 twelve 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 eyeliner is impossible, so how am I going to go back to work and put it on other people? I am bouncing some part of my body 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, having barely just lost the 30 lbs. Lyrica packed on. Oh Prednisone, my hated friend...

But it has also given me courage, to network with fellow Fibrates for the first time in the five years I've had this illness. And I am struck hard by how many different and far reaching health problems we all seem to have. Fibromyalgia is but one of myriad ailments for me, and it seems to be that way for a lot of folks I am chatting with. So what gives? It seems the total health cycle of the body is breaking down. Why? Are we the weaklings of modern times? Being attacked first because we are genetically or socially or mentally or emotionally vulnerable? The next take down in Darwin's survival of the fittest? No, I don't think so. I believe we are the sensitive and real. Having pushed myself so deep into the Fibromyalgia hole because I did not know to conduct life any other way, the stress and pressure to achieve so great, I can now look back and see the consequence of my actions. But there is no rewind button to push, just a lifetime of regret. Since I did not respect myself enough to take a step back, my body forced me to by giving out on me. So by virtue of pure necessity I had to withdrawal. From expectation, the type-A high stress lifestyle, super achieving at the expense of my sleep and diet and exercise and happiness and sanity. And demanding beyond human results. Fibromyalgia has forced me to shed those habits and expectations. Only when I found peace with my true self was I able to begin healing.

The pain of Fibro is overwhelming and made me SO angry! Why me? What do I do? Is this really going to take me down? How on earth do I live with this illness? 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 unrelenting and often doubted pain? Who can be a happy spouse or supportive parent or excellent employee or a confident and contributing member of society with agony and sickness coursing through every inch of our beings? So take a step back with me, and take a deep breath. Let's see if we can't start to love ourselves again. Begin to meander up the seemingly impossible vertical cliff of living with managed Fibromyalgia. A place where there is a lot less criticism of not getting enough done, but instead rejoice in what does get accomplished. Re-defined expectations to be kinder and gentler to you. Simplifying your lifestyle and surrounding yourself with those that love and believe in you. Continuing to search for a supportive doctor who will take you seriously and work with you through the complex maze of medications until you find your right treatment. Give yourself permission to suffer and hate this disease, and try to reach deep down inside and find the fight of your life, for that is the only way I have found the strength to get any better.

Thanks for joining,

Leah

This blog was originally published on 8/12/10. It has taken me the better part of the day to unravel my mad rantings and ravings into something that makes a point. I hated that drug, it took me over. Reading about it over a year later is not making me like it any better!