Wednesday, April 25, 2012

Free to be...Part Two

Oh hi! You came back!

My last post was something. If you haven't read it yet I will just say that this post will make much more sense if ya do.

Basically to summarize I recently realized that I need a little compassion in my life, compassion for others in my heart... manifested in actions and words.

I consider myself an OK person... sometimes a pretty decent human. Giving my time and things, sometimes an ear to people brings me joy. What I realized the other day was that though I love to give, I have not always been a great example as far compassion goes.

How can I expect people (including my children) to have compassion for me if I have little or none to give?

I think that having learned humor and sarcasm to deflect pain and to cope has a lot to do with that. Not to go back into it but yes, my childhood kinda sucked. I survived with laughter. My younger brother Ben and I made each other laugh.

A lot. By doing some really dorky things.

I believe that when one is broken down and is focusing on a singular thing such as survival... It can in some cases make you a feral animal. There's a smile on my face but if you look closer you realized that I am actually baring my teeth with sarcastic humor. It's not a smile at all.

The other day I decided I needed to be more compassionate in the midst of praying in the shower. Instead of asking for less pain or a miracle healing, I thanked Him for what I do have. In gratitude, with an open heart the truth was laid bare. Maybe I needed that gratitude, that softened heart to receive this message... and in this way I am choosing to learn from this experience.

I actually prayed to be more compassionate that day. I show love and care for the people I am closest to, sure. Heaven forbid you be a stranger and your bad day affects me, though. YOWZA. My husband has been known to leave my vicinity when things get ugly and I have and angry outburst because someone almost runs my kid over with their cart, or cuts in front of me in line.

Anger and sarcastic humor is a language all on it's own. I told my husband I only speak 2 languages, and English is the other. Compassion is not a language that is native to me. I understand a few words and phrases that might amount to the basics like "Where is the bathroom" or "My shoes are blue"... and probably all the curse words.

Compassion is devoid of sarcasm. They cannot really exist in the same space without causing a time/space paradox. ;) See? I cannot even talk about compassion right now without being sarcastic. Admitting you have a problem is the first step, right?

I believe that you can love someone at a core level, you know it in every fiber of your being. Showing compassion is something else entirely. Compassion is not reserved for just the ones we love, either. I read blog post at Kind Over Matter recently (cannot remember the title) where she chanted a mantra in the face of adversity, "I don't know what you're going through".

And amazingly a link to Kind Over Matter was delivered to my inbox. Coincidence? I don't think so. It said:

Self-absorption in all its forms kills empathy, let alone compassion. When we focus on ourselves, our world contracts as our problems and preoccupations loom large. But when we focus on others, our world expands. Our own problems drift to the periphery of the mind and so seem smaller, and we increase our capacity for connection -- or compassionate action.

Daniel Goleman

Compassion through repetition, grace through practice.

It's a good place to start.

While learning this new language, I might slip up... fall short... chip a tooth. The possibilities are endless. It's all new to me, being mindfully compassionate instead of  a little compassion by way giving. I apologize in advance if I sound like this, I'll do better next time... I promise.
Enjoy :)

Tuesday, April 24, 2012

Free to be...Part One

Here I am. I just am, nothing more... nothing less. Is that it, really*? 

*Hang on for a minute and take a little journey with me. I know I am going to upset a few people, the journey may get a little cloudy but I assure you there is a patch of sunshine waiting just over the ridge. Ready? Take my hand... I'm moving slower these days. I promise I wont go any faster than what the terrain calls for.

I was in the shower this morning thinking about how my life has changed since almost 2 weeks ago; peaks and valleys of mood, state of body and mind being so interconnected. I am finding things that are working a little for me and I am willing to accept that. I am open to these brief windows of being of less pain but not painless. I gave up on that notion a long time ago.

My mind wandered to that phrase[s] that has bothered me so much in my life. 
"All things happen for a reason."
"There is a reason why you are going through this, it's to teach you something."
"God never gives us more than we can handle."

The one that really gets to me was stated by Oprah, "I trust that everything happens for a reason, even when we're not wise enough to see it."

I cannot believe this to be true. I was once an Oprah-phile. That statement was the beginning of the end for me. I do not, cannot believe that God intended for all the horrible things that have happened in my life. I refuse to believe that he looked through time and decided that I would be sexually abused, physically and emotionally tormented by the ones who were supposed to care for me.

The flaw in this thinking- if you dare to consider it that way- is that it takes away accountability to the perpetrators. It points the finger at a God I would not want to love, or expect love from. Why would I trust in a God like that? But ultimately there is no free will in that line of thought

Whether or not you believe in a god, or my God... this thinking is destructive. It's passive and is almost an invitation for bad things to happen. "Que sera sera".

So I guess this means that I don't believe in destiny or fate. Logically,if my choices are already predestined and predertmined then they cannot be choices. I should be an unfeeling robot, waiting for life to happen since I would then really have no choice.

But I do. 

I thought about how much all those phrases bothered me, and pondered the fact that despite detesting the very core of all of those blurbs... I am learning something from this experience. But I am choosing to. 

I could waste my days crying over this new obstacle, this fallen tree in my path. I could choose to collapse against it's insurmountable weight . Or I can choose to grab at one of those branches beside me and pull myself up, and look for ways around it to get back to the road I am choosing to take.

In a matter of a few minutes I had all these thoughts swirling around me. 

Today, despite all that this illness entails... I am choosing to have a good day. I choose to be a compassionate human being in the face of my own adversities. I am going to choose to pay forward a heart full of gratitude, to sacrifice my own self pity in hopes that what tries to disable my body will not disable my heart and all that I have to offer.

I am choosing to be, rather than just I am.

Stay tuned for part two, it's gonna be a doozey! :D

Wednesday, April 18, 2012

Letting in the light

I decided to wash the dishes and I looked out my kitchen window to see helicopter seeds floating down from the gray sky. Despite the dreariness of the day that brought me momentary joy and smile to my tired face.

My eyes moved to the old tree in our backyard and my moment of joy settled like those seeds drifting across my yard. Dry and blackened in spots, a husk of tree hulks over my house and I am scared that we are one storm away from the upper level being destroyed, our children hurt. Some thirty feet it stands leafless and nearly lifeless, it's bark having fallen off in places. I am truly saddened to see what has become of our beloved shade tree.

I wistfully think about my kids as little ones, this house being the only home they have ever known... tripping over the damned roots of that tree. Despite the bumps and bruises and the momentary tears we have all enjoyed the shade, the sweet rustling of it's tender leaves on warming spring days, and eventually the solace it gave us from the exhausting heat of humid Iowa summers. It was almost as if it knew it had to hang on to get my girls through the early years, providing a haven from light rain and brief rain showers, it's branches hanging over part of their swing set and the rain bouncing from one leaf to another but never really hitting them.

Our tree will be cut down within the next week, and Jacob will never know all of those little things my daughters experienced as little ones. All those things we tend to take for granted that, the seemingly minute details that will one day make their childhood stories somehow more real and tangible. Fond memories from tiny scars...Sweetness for the most bitter of days.

We have known for several years our tree would be cut down and I have wondered how we will ever do without it's shade. Sections of the tree died over the years and we ignored how ugly those branches were, we chose to enjoy what it had left to give us.

I think about how I will miss those approving whispers that graced my ears as I closed my eyes for a moment, my nose raised to catch the green scents that swirled around me. I will miss almost hearing "This... this... this...", the wind tangling and untangling the leaves to cry out in unison as if warning me that I should appreciate this moment. Here, Now; whispers that were muffled by screeches and giggly laughter, the creaking of the swing set and endless requests for food and drink.

But cutting away this dead tree will allow your windows to let in much more light, cheering you despite the summer heat - I think, the repetition of washing dishes almost soothing me. It's wood will warm you in the winter, crackling in the glow of your fireplace... anointing  your aching bones. Pretty things will now grow in the places where shadows once were. All things fade, allowing for new life in it's place.

There is so much to be taken from this moment. It speaks to spirituality, to providing a safe haven for my children, life and death and the seeming finality. It spoke to me deeply about my body feeling as if it were failing me, about being so strong yet so fragile.

I'm choosing to ignore the gnarled-ness that my joints feel, the blackened spots on my heart and soul. I still have plenty of shade to give, solace to offer. I'm going to continue to produce gentle whispers of approval, soft reminders to my children to appreciate This. Here. Now... Only I will tuck my roots in as much as possible, I will not trip them up or alter their course from shade to light.




Tuesday, April 17, 2012

Excuse the dust, this body is under construction

Well, let's see... I'm on dose 4 of Nortriptyline for the new ball and chain in my life, fibromyalgia. I wouldn't say life is better per se, just a little different. I know, I know. I'm only on day 4. I need to give it time to build to a therapeutic level.

Some days have been good and some days have been meh. I'm lucky that so far I haven't really felt any adverse reactions from the medication except for a mild dizziness at times. I did have some nausea this morning but very mild in comparison to what I normally have been feeling every morning for almost a year now.

Yesterday and today my knees are bothering me, and I was unable to make it up the stairs to wake my daughters up for school today. Luckily I was able to coax my oldest out of bed by telling her I couldn't come up this morning.

Otherwise I have hours where I feel pretty good overall. Then I will have a chunk of time where I ache, but not severe pain in more than 6-7 spots like before I started this medication. For the most part I'm back to having 3-4 level pain (out of 10) at times in several spots of my body, but I have been living with that for many years so it's manageable.

Emotionally I feel very isolated, I have had a few people tell me they are available if I need to talk. As with the pain of my childhood, I know from experience that my life is unrelatable for the most part. I have struggled with having been physically and mentally abused by my mother, sexually abused by my father, infertility...

 I understand that most people cannot grasp what I explain. I get the general feeling that the things in my past are too crazy, too horrific for most people... and fibromyalgia has made me feel this way once again.

In the end, people ask the questions but rarely really want to hear the answers. So I have learned to plaster on a happy face. Not many people get to see behind the curtain to the real me which is fluffed, powdered and painted for the general masses... for public consumption. I self deprecate and joke to hide my pain, but I have been doing this for so long it is my song and dance, my vaudeville production. I find myself hovering just at the edge of despair and try to go about my day as I would have before my pain was given a name.

What I find hilarious on a cosmic level is this: I have for many, many years swallowed my pain, distracted myself from the depths of depression, avoided "professional help" because I do not want to be lumped in with the likes of my mother. I do not want to be diagnosed with mental illness. I do not want to be told I have problems and that I need to be on medication. I most certainly have never wanted to walk around in a drug induced haze to numb the pain.

And yet here I am... on an antidepressant for this. I have laughed bitterly about this to myself. I can do nothing but cry out to God for some sort of solace and relief, and even though I know ( and have known in my 42 years, and the knowing has kept me from falling into the blackest of  depressions) that there are all sorts of people out there in this world- especially little ones- that are going through so much worse than what I have experienced in my life.

It makes me sad and thankful. It makes me pray on occasion, especially when I happen to hear the unspeakable things going on outside my little bubble.

It brings me to my knees and I thank God for the breath I draw, for this life that I have, for a man that loves me even though I have fallen short in so many ways, for children that I was told I would never have.

So excuse me for a moment, pardon my dust while I sort through the storm. I will find a place of quiet safety, I will be glad for all that I have... mostly. :) It's not going to be rainbows and Disney animals all the time folks but even now I am swimming my way to the surface for a breath of air.

Excuse me while I let love and light build to therapeutic levels.

 I am still trying to change my point of view, one positive thought at a time.

Wednesday, April 11, 2012

I passed the test...Do I get a prize?

Today I had my doctors appointment, and let me first say that I am so blessed to have a family doc that listens and does not patronize me. He truly cares. I suppose it helps that he and John go to the same men's group at church on Saturdays and that they are kind of friends.

Knowing me and my medical history can be overwhelming so I took some time this morning to type up a brief history of complaints specifically related to what I think is going on with me. Call it OCD, call it odd... You would be right. I am nothing if not prepared.

After listening to me, and letting me know he had read my semi-exhausting exhaustive history, he told me that there were pressure points he wanted to check. I nodded in agreement, wincing internally, already knowing where those points were from my Google searches on Fibromyalgia.

It went a little something like this:

Doc, while pressing on my hips: Here...

Me: Yeh-ESSS!!!

Doc, pressing my lower back: Herrrrre...

Me: YUP!!!!!

Doc, pressing my right inner elbow: HERRREEE...

Me: Ummmm no...

Doc: Really? *he moves his fingers slightly*

Me: OK. Yes. YESSS!! YUUUUUUUP!!! *begging and pleading with my eyes and inflection for him to stop*

It went on like this until he had checked all 18 points, apologizing profusely as he went. He then told me that I had all 18 out of 18. My doc told me, "Yes, I believe you do have Fibromyalgia. You have all the classic symptoms."

 He wants to try the lowest dose of Nortriptyline one pill at bed time, then to see me in 4 weeks.

Having been a nurse I already knew that serotonin plays a big part in a lot of disorders and illnesses like OCD, depression, altered pain pathways and excessive pain. I also already knew that depression meds have been helpful in these instances so I was not surprised to find that I would be on a med that was normally prescribed for depression.

He is also having me try a new medication for reflux. I have had a sensitivity  and allergic reactions to many medications in the past, including recently Prilosec. I have taken Cymbalta in the past and only stayed on for 5 days because it made me feel nauseated and sick, loopy and apathetic. I hope I do ok on these new meds. I guess I'll try the Nortriptyline first, taking two new meds would be just stupid in my case.

I did cry briefly when he gave it a name. I'll be honest. It was a mix of relief and sadness that washed over me, but he was very sweet and that made such a huge difference. He reassured me we would try what we needed to until we found something that worked for me.

On a lighter note!!! (wait for it... )

He told me to stay away from caffeine, chocolate, greasy food and spicy food. I gave him a grumpy face and "harrumphed", and he laughed.  I told a dear friend today that my doctor had basically cut out my whole diet.

What happened in the next few minutes is typically what you can expect from me. I always use humor to make people laugh, deflect pain, lighten the mood. It's one of my strongest survival skills. My doc asked my how on earth I had gone this long without being diagnosed, why I had never brought up fibromyalgia before. I told him again how I lived most of my life in pain, pain was just a fact of everyday life for me. Being that I have not spoken to my mother in eight years, it had not ever entered my mind until I started having MORE pain, and more pain simultaneously.

Doc, shaking his head and chuckling: Well, you have 18 out of 18...

Me: I'm an over-achiever... you should already know this about me!!! I had 30 gallstones for Pete's sake, I don't do anything halfway!

When I told my husband what my doc had taken out of my diet, he nearly fell over laughing hysterically. I pleaded with my husband, "What the -insert expletive here- am I supposed to eat then? RICE???"

I guess I'm going on the Survivor diet.

This is the face of Fibromyalgia :)

 One day it will be this again...
Until then ...

I hope and dream.


Tuesday, April 10, 2012


I'm hoping there is a light at the end of this tunnel; I know tomorrow's doctor visit is just the beginning of finding out what is going on with my body.

I wonder if he will send me to a rheumatologist?

I basically feel like I have the flu[s]. I am so tired, my body aches in different spots, sometimes all at once. I have lower stomach aches every time I need to use the restroom, and I often become nauseated. That coupled with CONSTANT heartburn and the fact that I fell yesterday (I am feeling the affects of that on the right side, the side I fell on)...

I can feel myself slipping into a depression. I do not want to live like this for the rest of my life, but it's not my choice.

I feel like my constant complaining is annoying to my family, and they tune me out. So I choose to suffer in silence. They ask me what's wrong. I say "nothing".

My 20 month old is going through an extremely clingy phase just like the other 2 did. I find I cannot walk 5 feet, let alone leave the room for a few minutes without him whining, crying or going full tilt. It makes me more anxious... I feel so trapped in so many ways.

The things I choose to concentrate on  are giving my kids hugs and telling them I love them, thanking them for helping me when I ask- even if they help me begrudgingly. I have been trying to be affectionate with my husband but I'm not sure he notices (or cares) , which makes me desperately sad. BUT... my kids accept my love and soak it in. That will have to do for now :)

Tonight I get to polish some jewelry I have up for sale in a salon in town, bring in a table for the vintage teacup candles I have made and a table to display them on. I also hope to get in a few new pieces as well.

I'm hanging on to the glimmers and glimpses of hope, and in the meantime I try not to be too anxious about wondering what my doc will have to say.

I hope you have a peaceful day, wherever you are.


Saturday, April 07, 2012

What is this pain? Could it be fibromyalgia?

I have been living with physical pain for quite some time, I believe my first chronic pain started when I was 11. I can remember falling onto my back from a great height for the second time in my life, the first time being when I was probably only 4. Since the 6th grade I have had back problems.

Everyday I have pain. Sometimes aches, sometimes a tremendous amount of joint pain after sitting for 1/2 hour. This has been my life for the last 31 of my 42 years, until recently.

Let me just say that having a baby at the age of 40 was hard on me, I strongly recommend you do NOT try it unless you are of sound body! I was very sick most of the pregnancy, living from my recliner and just standing for a few minutes had me contracting. This son of mine took me down, literally. I shrunk a whole inch while pregnant with Jacob. I ached, I struggled to move from my trusty recliner just to use the restroom or get a drink.

Nearly two years later, still feeling so very sick after he was born my surgeon discovered a whopping 30 gallstones in my gallbladder. But why I am I still nauseated most mornings? Surely I cannot live like this after being told that I would feel so much better after having my gallbladder removed.

And now, two weeks ago I started having aches and pains in my left shoulder which gradually escalated to full on fire and tenderness. Just gently wrapping a towel around my shoulders after a shower brought tears to my eyes just a few days ago.

The pain seems to have started in my left shoulder and each day after moved across my torso a little more. I don't mean that the pain was only in the new spot, I mean I was and am having simultaneous pain firing off at the same time throughout my body. It brought me to tears. It has worked it's way to my right shoulder now and my lower right back.

In the midst of this I realized that my mother had told me many years ago that she was diagnosed with fibromyalgia. I Googled symptoms and I seemed to have the almost all of them, which is unsettling and yet comforting at the same time. The cause of my pain now (possibly) has a name, yet the thought of living with this for the rest of my life is very depressing.

From WebMD:
Common symptoms of fibromyalgia -- also known as fibromyalgia syndrome or FMS -- may include:
  • Pain
  • Anxiety
  • Concentration and memory problems -- known as "fibro fog"
  • Depression
  • Fatigue
  • Headaches
  • Irritable bowel syndrome
  • Morning stiffness
  • Painful menstrual cramps
  • Sleep problems
  • Swelling, numbness, and tingling in hands, arms, feet, and legs
  • Tender points
  • Urinary symptoms

I once again am sequestered to my trusty recliner while my house work and jewelry to do list seems to grow to unmanageable levels. I take care of my kids and do the basics like dishes, while the laundry piles up.

In the meantime, I have an appointment this next week with my family doctor. I am axious to hear what he has to say. 

If you have a history of FMS and you have some tips for me or websites that you would like to share, I would be grateful! Tell me what you are doing to ease your symptoms and what you are doing to cope.

Thanks for reading!
 Keeping it real, keeping it honest with a glimmer of hope,