I know, I know, I know. . .

Tuesday can't get here fast enough. After being told by my last counselor, that she didn't want to talk about the issues I'm having with fibromyalgia; I called my fibro doc and he recommended someone who specializes in pain, fatigue and fibromyalgia. I really need to talk to someone who understands this life-changing experience who understands what I'm going through. After a little over a month, I finally have my first appointment. I have to admit, it's been tough hanging in this long. I keep promising myself that I won't make this blog a woe is me pity party. But right now, this is my life. The good, bad, ugly and scary.

There is a very real possibility that Eddie is going to either have his classes cut by 50% or be furloughed because of the (evil) Genius Gov. Corbett's funding cuts to education. I'm not working because of the fibromyalgia. Both Eddie and I have pre-existing conditions so we NEED his insurance benefits. He already wants to get a 2nd part-time job until the disability situation is taken care of. He says, just in case. I can see the worry on his face. He tries to hide it because he knows that stress can aggravate the fibro. I hide my stress because he's already taken on so much responsibility. We're both trying to hold things together for the sake of each other, but we can't keep it up much longer. I know we're both close to running on empty.

I have this internal battle that I should just suck it up and get a job and when things calm down, I can stop working. Except, that's what led to everything falling apart in 9/09. Eddie, our family and my doctors don't think that's the best idea. I don't think I can be working while I file a claim for disability. So it's a double-edged sword. But what else can I do? I don't like the idea of Eddie working himself to the point of exhaustion. He can't, because he needs to take care of himself too. He volunteers this without hesitation; all the while, I feel like a horrible person for being the cause of all this. How can I do this to him?

So Tuesday can't get here fast enough. In my head the answers are there, it's just getting to them. I'm like a deer in the headlights and I need someone to help guide me in the right direction rather than focus on issues that have been hashed out and taken care of (at least for now.) And I promise, I'll get away from the morose posts once I'm back to myself.

Identity Theft

As children, we dream about who we would be when we grow up. Doctor, Lawyer, Teacher, Super Hero, Princess. We go through life planning and preparing for our future, course correcting when needed but still keeping that childhood vision. Me, I wanted to be a dolphin trainer/teacher/doctor/lawyer/musician. By college, I honed in on exactly what it is I wanted to be and started the journey to realizing the grownup me.

What I didn't count on, what I didn't prepare for, was that at 33, I would find myself filling out paperwork for disability. This isn't me, this isn't the life I dreamed of. Someone Something has hijacked my life and taken over. This surely can't be my life, it can't be me. I have spent nearly two years going to doctors, trying therapies, taking more medicine than I have ever taken in my entire life until this point. All with the hopes that I would find a way to return back to work. I'll get better, I'll learn how to deal with it, put it behind me.

The problem with that is your brain may say go, go, go. Your body, on the other hand, will stop you cold in your tracks. My body did just that. It shut down and in a big way. I no longer had control over what was happening. In my head, I watched as I spun out of control, a slow burn that exploded on impact. It was unexpected, inevitable and horrifying. I barely recognize myself and I don't remember nearly an entire year of my life.

I've been told that fibromyalgia typically shows up this way. Mostly because after countless doctors appointments, tests, medicines and therapies you still feel no relief. So you begin to think it's all in your head, that it will go away. So I pushed myself to do better. I worked harder, more hours to overcome the sinking feeling of the world crumbling around you. I could have asked for help or said I was overwhelmed. I tried to not let it isolate me from the life that is happening around me. But over 5 years of no answers and more symptoms at some point you just. . . give up.

It was easier to not make plans. If you don't interact with people, you can't let them down by not being able to do something as simple as go to dinner. I allowed this thing to hold me hostage. I confided in virtual strangers because it was easier than letting someone close watch my downward spiral. Strangers can't hurt you the way the betrayal of a close friend can. It was minimizing the debris field of my life.

No,this is not me. Not who I planned to be. That's ok, because this doesn't have to stay me. Only I can determine who I really am and I refuse to let this be the deciding factor in my life.

Atlas

A heart of gold, he loves me, flaws and all. Without him I'd be lost. Never complaining, always worrying but never letting on.  I love him more than he knows, more than I can describe in words. He is Atlas, holding the weight of our wold on his shoulders.

An Exercise in Healing

At my last head shrink session (yes, I'm in therapy), I was asked to make a list. To put down my thoughts about why I have low self esteem and why I devalue myself. I could have taken the easy route and just scratched the surface. Some superficial boilerplate responses. As I started down that path, I realized that easy won't get me anywhere. You can't come to peace if you aren't truthful and honest about yourself. If that were the case, big pharma would take a huge hit to their business in anti-depression and anti-anxiety medications.

It's hard, really, to pinpoint exactly when it all started. I remember being a very precocious child. Very curious about life and the world around me. Never satisifed, much to my parents exacerbation, with a 'because I said so' response to my numerous questions. At 4 years, I walked up to strangers on the beach exclaiming "I'm 4-years-old and I'm smart."

By 8, I was hustling the watch sellers in New York City. My spoils, 4 watches for the price of one. I was confident, self aware and in some ways, mature for my age.I talked at an early age, and as my mother has reminded me, I have not shut up since. Fascinated by books, I read at an even earlier age and as my grandmother tells me, I could always be found tucked away reading. Where I was, a book was not far behind (a fact that has not changed to this day).

I read above my grade level. I knew words beyond my age. In so many ways, I felt ages older than my classmates and by 5th grade this difference became socially unacceptable behavior for a pre-teen looking for acceptance. Not only did I feel older than my contemporaries, but I felt empathetic for people around me. I became a fixer, seeking out other outcasts and yet unable to help or fix myself.

By Junior High and High School, I settled into a niche of friends, most of whom were in grades above my own. I was comfortable speaking with adults and yet so unable to relate to those my own age. I didn't understand how people children who did not know me could be so mean and spiteful. I didn't understand why or how people were mean to other humans for no reason other than because they could. At times, I felt crushed and consumed by the thought of such unabashed and unnecissary meanness.

I survived High School mostly because of a very small group of close friends. I survived because I had music as an outlet. I survived because my parents and brother told me they loved me. I survived because I knew in college I would be away from the small-minded, small-time and small-town people.

I did not walk away without battle scars, without parts of me irevocably changed. The fixer in me compartmentalized the 'broken' and 'hurt' me. If I helped others I didn't have to think about my own pain. That unconcious act snowballed into part of who I am today. A giver who gave until there was nothing left. It worked for a long time. Except it didn't really work, because if it did we would not be here talking about this today.

We've only just begun to unravel and untangle this one part of who I am today. As I look at my 'homework' and see the life-altering events and reasons that shaped my sense of self, I'm satisfied knowing that I am starting to head in the right direction. I know, when this is all said and done, that this journey towards healing is worth it, I am worth it. I am loved.

Fuck You Fibro

It's funny, I've attempted to update this blog for several weeks now. It's not for lack of things happening in my life that has kept me from blogging. In fact, I've started and stopped several times to write something. The words are just stuck in my head. A result, no doubt, of fibrofog that seems to be coming around more often these days.

It's the same routine, change in meds, change in dosages. A slippery slope that we keep teetering on each visit. Too much of one medicine makes my nerves hyper aware, too little and I have no relief. I think this would be so much more manageable if I knew what makes the fibro flare up. It's not like I know that a+b = flareup. It's not so concrete.

Really though, I just want my life back. I'm normally extroverted but lately I haven't felt so social outside of my own house. It's just easier that way. Getting out sometimes is a chore and I can't always predict when I'll have a good day. They're few and far-between and that can lead to not being such a good friend.

Just started Aqua therapy. Being in the warm water is less stressful on my nerves and takes some of the strain off of my muscles. Who knows, this aqua therapy thing could really help. It at least offers some relief from pain. There's nothing like getting into 90+ degree water to ease these nerves of mine. The temporary relief is worth it though.

G

I miss you more than I can bear some days. What I wouldn't give to have those five months one more time. Five weeks, five days, five minutes, just one more time to tell you how much I love you. I see you, every night, in my dreams. I wake, arms heavy but empty. I'm sorry you did not have the life that you deserved; but I have been forever changed by the brief time you were here with me.

My sweet boy, I never thought that I would love something so unconditionally, so purely. I loved you the moment I saw you, the moment you first cried, the first time I held you and the last time even more. I'm sorry that I was not there for your last breath. I would give everything to have been there, so you would know that I was there, so you could feel my love as you left this life.

I take comfort in knowing that I will see you someday. I write this now, the words forever imprinted on my heart. I love you more than words, more than the universe my beautiful boy.

Teenage Wasteland

I grew up in a very small town, in what most people called the armpit of Pennsylvania, where the state meets Maryland and Delaware. The bucolic farm fields and lazy 3-light town left little to do by means of entertainment. In fact, when cow-tipping and loitering became tiresome, one found themselves on a 45-minute car ride to greater things like movie-theatres and shopping malls.

In fact, one often found themselves crossing state lines twice in pursuit of something other than what O-Town (the place I lived, not the very bad boy-band) had to offer. Small-town meant limited opportunity for employment. Teens often found that the three major employers were 2 fast-food joints and a grocery store. Wanting more and at the suggestion of a friend; I found myself on a daily commute to Amish-Country. Smack dab in the middle, in fact.

What better, to educate the masses on the lives of the Amish, was ironically a theme-park. Yes, the Amish, who shunned all forms of modern life and technology were represented by a roller-coaster, game-filled 'amusement' park for children. While most people chose to work in the park as a ride operator or in the games or food booths; I chose to work in the Gift Shop thinking that of the employment positions, Gift Shop would require the least effort and would be the least likely to put me in with the throngs of crying, hyper, temper-tantrum throwing children. BIG MISTAKE.

The Gift Shop was located in the Castle (yes, Dutch Wonderland, an Amish Theme Park had a castle, moat, dragon and 'roller coaster' named Sky Princess). The Castle was the ONLY entrance into the park. So while the quiet, polite children entered the park in the morning; they were replaced with screaming, spitting, demon-children at the end of the day. These spawns of Satan would descend on a recently stocked and straightened display like locusts and in a matter of seconds have it destroyed and the nearest Gift Shop employee in near mental-breakdown.

Parents, whose cherubic children turned demon, were haggard and tired after a day in the sun riding dated theme park rides. Strollers that once carried happy children were now filled with the spoils of the carnival games. These strollers that now turned the already tight quarters of the gift shop into mazes booby trapped with sticky, dirty children. Displays meant to attract children became death traps for the poor souls working in the Gift Shop.

I routinely found myself dodging bouncy super balls, weaving through a gauntlet of hula hoops and jumping to avoid the snap of bull-whips and pop guns at the cowboy stand. Keeping a well-stocked and orderly gift shop was a near Sisyphean attempt once the park closed. The last-minute park goers were shuffled into the Gift Shop, which conveniently was open an hour later than the park.

Considered Ambassadors to the park we often fielded questions that most times bordered on pure idiocy. 'What time do the Amish go home?' They don't, that is actually how they live. 'Why don't they have televisions?' 'How do you audition to be an Amish?'. 'Where do I get an Amish Costume?' 'Where is the beach in PA, the one by Ocean City Maryland?' Yeah, I looked at him the same way too. PA, the land-locked state with Oceanfront beaches.

This job that left me exhausted, that tested my patience, was not without perks. My name badge afforded me something invaluable to a teenager living in the middle of nowhere. In addition to free entrance to the very park that I worked, I payed half-price at the movie theatre that was adjacent to the park. Most importantly though, my name badge awarded me and one lucky friend half-priced tickets to Hershey Park and Dorney Park. The grown-up versions of Dutch Wonderland.

As the beginning of the summer-season approached I would question my sanity as I signed up for 3 months of torture, the long and windy back road trip filled with molasses slow horse and buggies, closing shifts only to come back the next day to open. Each time, I agreed. Dug out the pleated-front blue khaki pants and blue and white striped shirt. I laced my white and blue sneakers and attached my name tag and prepared to enter the insanity. All in the name of a boredom free summer.