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!

Everybody Knows Her

...or him. But we all know them. Those folks who walk around life oblivious. Carefree of the problems of the world, their own comfort and happiness their primary concern. They do not cry when someone else's spouse dies or mother is stricken with cancer. A mere "how sad" is about all they will usually muster. If they are hot or cold or hungry or tired the whole world halts in its tracks to allow them to sleep or warm up or cool down or eat. No matter the inconvenience this may cause. For they have needs that must be met so why on earth would we not help them? Selfish people exist the whole world over. Some we are even married to or birthed by or are born of our own flesh and blood. Others we are friends with, work with or for whatever crazy reason are forced to deal with.

Part of me wishes I could be this way. Fibromyalgia would be so much easier if I didn't give a rats woo-ha about other people's feelings. But for whatever innate guttural reason, other people's feelings are often far more important to me than my own. I will push and sacrifice and put up with endless amounts of absurdities. I will accommodate and acquiesce to the stupidest requests, blowing my carefully constructed life apart in the process. See I seem to have, and a great many of the Fibromyalgia patients I talk to do too, this people-pleasing complex. Not so much a desire to be popular and admired the world over. It is much simpler and far deeper than that. It is a need to be needed. A need to make other people comfortable, make them happy. It is the woman scrubbing her bathtub with a herniated disc in her back, she is our poster child.

We all have selfish people in our lives. And the stress or requirements or expectations can often become too much for us to take. Or we become aware of a whole insane aspect of our lives created and affected by these people that must change. Sometimes cutting them out of our lives is not an option. Sometimes it is the only option. Managing demanding relationships is yet another major component in managing Fibromyalgia. I have learned how to become okay with people not liking me, calling me selfish, or becoming irritated with what I won't do. But it still stings and makes me mad, for I don't like to be disliked. No matter how hard it may be, though, sometimes saying goodbye, no or not today is the sanest thing a Fibrate can do.

Thanks for joining,

Leah

How Grinchette Stole Christmas

My last blog was a sanctimonious display of my naive hopefulness. That we could skip the "gift" part of Christmas and then, and only then, would we experience the true joy of the season. What it was meant to be. Not about gifts and cookies and parties and trees and all the trimmings, but the pure essence of Christmas itself. This whole no gift thing sounded great in theory, and I nobly droned on and on about skipping presents because I did not have the energy, health or money. And how that was the solution I was choosing, for this year, to accommodate Fibromyalgia. 

So we skipped presents. And I woke up Christmas morning in tears. There was nothing to look forward to! There were no hidden gems under the tree for my husband to discover. Gifts thoughtfully planned out, serving to remind him how much I appreciate him. How much I treasure him. He had none. There was no over-indulgence he spoiled me with because he loves me and thinks I deserve it. There were no packages of things I casually mentioned over the last few months as needing but didn't have room for in my budget. There was nothing. I did not even wrap up Yorkie and Porkie gifts or buy my poor puppies a bone.

And I hated every last second of it! Maybe that makes me shallow but it sucked. I stomped around and grumbled, wondering what on earth set this day apart from all the rest. It was on a Sunday so not even church was out of the ordinary! We were lazy, watched TV and took the dogs to the park. Dinner was good, the day relaxing. But I learned a valuable lesson. There is somewhere between throwing your financial stability in the trash and no presents. It is middle ground. It is keeping in mind gifts are but a token of appreciation for those we love. The joy of giving rivals that of receiving, and there is no shame in exchanging gifts. My husband was a good sport. I looked at him halfway through the day and told him I was sorry I stole Christmas. I was sad about my choice. He teased me a bit, made me promise I was never going to "pull this crap again", and let it go. Thank heavens he forgives me easier than I do.

Thanks for joining,

Leah

Hot Tub Time Machine

I must be the only person in the world that cried at the end of Hot Tub Time Machine. I sat there with my husband and friend laughing at me in an understanding way as I poured out my feelings of bewilderment and regret. How was I sitting on my sofa two days past my 34th birthday having barely survived two strokes, four pancreas attacks and a debilitating virus under my belt, and a mysterious neurological condition still plaguing my present (Fibromyalgia)? I flashed back to my own high-school and college years and marveled at the road I've traveled. My childhood was unprincipled and colorful and I grew into a wild youth who began self-medicating at the crest of puberty. Always pushing the envelope of acceptable, I put my parents through hell and strove to define myself in the extremes during my teenage years. I was drinking and smoking and doing those crazy things inexperience tells you its okay to do, breaking curfew and sneaking out and being willfully disobedient. How they still love me is by the grace of God, that unconditional parental love thing or something. 

Thankfully my family had the foresight to help send me on a trip to Europe the summer between my junior and senior years of high-school, a trip that changed my life. I worked hard and saved up, quitting my shopping habit and ripping off my long fake fingernails in exchange for the exotic unknown of a month abroad. It gave me exposure to the world, languages, cultures, ways of living, perceptions, experiences...a whole different future. I went home with a stick up my ass, thumbing my nose at my friends running around middle-class suburbia in their cigarette-smoke steeped flannel shirts, getting high at their Nirvana grunge parties. I thought I was so beyond them. I was worldly now, had tasted it and wanted more. My senior year of high school found me different. Stepping away from my wayward party friends I decided I actually wanted to know some people at my 10-year reunion. I joined yearbook and went to senior ball, doing all those quintessential things high-school memories are made of. Stumbling off to a premier party school, college was an excessive indulgence of frat-house kegers and buck night at the bars. This continued on until pancreatitis caught my attention, well past graduation. Since then it has been a constant battle to allow myself to feel and survive the emotions without itching to dull the pain, the sheer pain of what simply feeling means to me.

So as I watched this group of jack-ass guys, miserable 20 years after youth had launched, bumbling around back in time like moronic teenagers, I saw how much what was becomes what is. I became overwhelmed with feelings of regret and remorse. Have I done this to myself? Did I cause these serious health problems during my youth of excess that are now manifesting themselves in my still very young body? Lots of people do far worse than I did, so why me? And if so, knowing what I know now, would I have done it any different? So as the tears sprung I poured out my heart. I know the one right thing I have done in my life was marry my husband, and our relationship was born from this youth I want so badly to regret, to blame. As I settled down I concluded that no, most likely I would not have done one damn thing different. Youth is dumb, pain is real, and all I can do now is pray by the grace of God I can find the path I was created to follow, step on and go for that ride. I am sick of being in the drivers seat.

Thanks for joining,

Leah

This blog was originally published on 8/6/10. I was very confused and emotional and had yet to experience what the treatment for these strokes would do to me.

A Reindeer Named Pacer

I sung the song Rudolph The Red Nosed Reindeer to myself five times, swearing there was a reindeer named Pacer in the mix. But no, there is not. I wonder who sets their pace? Maybe none of them, that is how they get it all done in one night. There should be a reindeer named Pacer, though, to remind us all to slow down. And not just us Fibromyalgia patients, but everyone the whole world over, we need to learn how to p-a-c-e. Holiday expectation is out of control. The frenzy of shopping and wrapping and spending and cleaning and baking and cooking used to take me down anyway, but I figured that was because I worked retail. Long hours, irritable shoppers and open till midnight turned this girl into a good ol' fashioned Grinch. Once I got Fibromyalgia, Christmas became it's own special kind of hell. I was still stuck on the carousel of retail Christmas but I was sick, too. So I pretty much became accustomed to not liking Christmas. It was not the holiday itself, of course, but the hubalub surrounding it. The sheer unnecessity of what it had become. 

I no longer work retail, this will be my second year now, but I have yet to discover my Christmas spirit. Because the pace of the darn holiday is set by everyone else, still seeped in so much expectation. Expectation I certainly cannot meet. I tried burying my head in the sand like an ostrich and ignoring it, hoping it was over by the time I came up for air. But I am too impatient. I have actually talked my husband into skipping presents this year though, because I just don't have it in me. We don't have kids or money and that is what makes the present giving aspect of the holiday fun. But I also know waking up Christmas morning with nothing to squeal at under the tree is depressing. 

So I am taking back my Christmas! For me and my family. I am setting my own pace. One I can live with, accomplish, enjoy. I am wrapping up Yorkie & Porkie's presents from last year they have hardly touched and will put those under the tree. They do like to unwrap but seem to be more interested in clawing off the paper than what is actually in the package. Typical children. Maybe I will throw in an extra bone or two hidden in the mix to keep them busy the rest of the day. My husband and I decided the present we are giving ourselves is to not spend money we don't have. Come mid-January that will make me very happy. But on Christmas morning we still want to share the gift-giving glow. So I have set up a challenge. We are giving each other something that costs nothing. Maximum creativity is required here, but you would be amazed at what gifts already lie at the ready. Gifts of the heart, time, passion, excitement. Gifts of love. Of course I cannot tell you what I am giving my husband, for he might actually read this blog. But I wanted to share with you all today, my friends that understand what a challenge the holidays are when chronically ill, there is a way to make this holiday enjoyable and purposeful. Reach in your heart and find your personal pace. That is how I found my reindeer named Pacer.

Thanks for joining,

Leah

Many Shades Of Gray

The longer I live
And older I get
The more I realize life is not black and white.

As I discover myself
What is important, and what is not
I become more and more certain life is anything but black and white.

I experience and I grow
Emotionally, spiritually and mentally
And can pretty much guarantee I am looking at a rainbow of gray.

No it is not a colorful rainbow
Full of vibrant brightness brightening up ones day
Instead it represents the many shades of reality we are forced to play.

There is no pot of gold at the end of this rainbow
This vast and collective experience
Also known as life.

Good and evil
Right and wrong
Not nearly as clear cut as the rhymes of my childhood told me in song.

Happily ever after is subjective
Babies are not born with instructions on how to get them there
And life, oh it is most certainly not fair.

But if one is willing
To get wet and dirty and stomp around in the mud
Perhaps they can discover their individual joy.

That swirled up combination
Of every shade between black and white
That makes up our complexities, becomes our psyches.

Our love, passion and grace
Living life fully, laughing along the way
No matter the pain, no matter the price.

Thanks for joining,
Leah