A Major Announcement…

Ok, well maybe not a major announcement, but I’m back. Back, to letting my brain flow through these cold fingertips of mine. Back, at least for today. I have missed you and appreciate the messages of encouragement, wonder and care I got from some of my readers. Each letter strengthens my daily resolve.

 

I have no reason for stepping away from the blog…just as I have no reason for returning again. However, here I am. I wish I could relay tales of wonderment while I was away, but alas, it has been just like any other span of time encompassed in the last few years. Taking each day…each moment…for what it is. Dealing with the immediate and trying to look forward to the next.

 

The next hour…

The next day…

The next pain free moment…

The next quiet dinner with my wife…

The next…always waiting.

 

I have found that days have very little identification at the moment. One seems to bleed into another, into another. I am still working a few hours a week with my student, and have found it to be equally rewarding and exhausting. Equally challenging and educational. We are currently reading the book Ishmael by Daniel Quinn. I bought a copy myself so that I could read along and we could have deep discussions about the story, and meaning of the book. If you have not read this one, I might suggest it. I’m sure a trip to your local library may uncover and old copy. Very interesting perspective on life and where it may or may not be heading, all taught by the unlikeliest of characters.

 

Well, Friday is another big day for me. It’s new doctor day! (Typed in my most sarcastic thought) This will be Primary Doctor numero 5 in a three year period. That of course does not count all the other specialists and incompetents that I met along my journey. The last two moved from Oregon to Georgia. To Georgia!! Absolutely no disrespect to any Georgia Peaches that might be reading; but who moves from Oregon to Georgia? Better yet…who finds two doctors that decide to move from Oregon to Georgia….This guy!

 

So I have filled out my new patient paperwork, copied and delivered a small novel of medical records and reports (they can request the rest of the bookcase on their own) and delivered it all with sticky tabs and notes. Hopefully when I walk in the doctor will have an idea of why I am there, and won’t have to read the folder to know my name. In all fairness I did meet the new doctor very briefly when I went in for the paperwork, and felt a calm energy about her.

 

Now finding a doctor is rather interesting in my case. I don’t have, and haven’t had for awhile, ‘traditional insurance’. Therefore calling around and finding a good doctor is not all that easy. About a year ago my wife found a local Physician’s coop where we pay a monthly fee and then have a certain amount of visits a year, with my doctor it will be 9 a year after the initial visit. Then, when it comes to testing deals have been worked out with various labs for reduced costs…but still all costs to me. Each doctor has their own plan of visits, and varying prices for the initial cost. So finding the right doctor is like rolling the dice in Vegas. You go in with the knowledge you have and hope for the best.

 

So we will see where we go now on this journey of mine. Each season seems to bring a new road…or more correctly a new direction of the road. Seldom does it appear as a fork, allowing me to choose my way. It’s more like a spoon…dipping down and then climbing out the other side.

 

So for today I write, with no promises or expectations on tomorrow. The sun is shining; the weather is in the 70s and it’s my favorite month. I think my cane and I have a date for a path. A path I WILL choose.

 

May all of you have a pain free moment until we read again.

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Read Between the Lines

I am a man with Fibro
That makes me unique
I am a man with Fibro
Everyone has a critique
I am a man with Fibro
I ache in every last bone
I am a man with Fibro
Don’t look at me with that tone
I am a man with Fibro
It really is a big deal
I am a man with Fibro
It takes all my energy to heal
I am a man with Fibro
People will see what they see
I am a man with Fibro
Yet, there is more to me
I am a man with Fibro
Not as strong as I look
I am a man with Fibro
Don’t judge…I am NOT a book!
I am a man with Fibro
Each day comes anew
I am a man with Fibro
What it brings, I haven’t a clue
I am a man with Fibro
Dealing with what’s been dealt
I am a man with Fibro
Feeling worse than I’ve ever felt
I am a man with Fibro
So I write this blog
I am a man with Fibro
My words will bring me From the Fog

I am Back

Ok, we’ll the truth is, I wasn’t completely gone. The last week has been one of chaos, craziness, exhaustion, adventures, family and good times. My schedule has been fairly non-existent…you Fibrites know the importance of a schedule. Seems like we have to plan each minute detail. Although I have found moments to write and keep my blog updated (thank goodness for scheduled blogs), I have not had the time to read and explore other blogs as much I would like.

However, life is getting back to normal (as normal as my life can be). I am working on a big, super exciting blog for tomorrow. With all the excitement in my physical life, I have noticed an increased excitement in my blog. I am very excited to share some things with all of you, but today I am going to be catching up on missed blogs, developing my next entry and finish refilling my energy tanks.

So even though I wasn’t technically gone…I am back.

The meaning is in the word

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For this fighter,
It’s been a journey down a dark path.
But a brightness begins to shine through,
Removing the foggy notions.
Overcoming this illness
Means listening to my body.
You never know what it might have to say.
Always moving…step after step.
Letting myself believe in a future.
Giving myself permission to live life.
I will find the end of this path,
And conquer all that stands in my way.

 

This Blog brought to you by caffeine…lots of caffeine.

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I push through the doors with my waning strength
I am met with glassy eyes watching my every move
The soft murmur of voices bouncing off the walls
The sweet stench of last night’s adventures waifs in the air
I scan the room trying to find a clear path
I zig and I zag through the masses
Avoiding eye contact or conversation
The crowds part as I step forward
I bundle my resolve
I find the words and I blurt out
Coffee please!

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I know I am not the only one bitching under my breath about the cursed time change. I understand that I am not isolated on a time changing island…although it feels like it some days. Take my wife for example. Her lost hour is sandwiched between a couple of 10 hour shifts. Luckily she works at a place where caffeine can be procured in abundance. I may not have work, but Fibro as made sure I have my own issues. It’s special like that.

Now I believe that there are some benefits to the time change; most change usually brings both good and bad. Our days are now longer. No more beautiful 3:30 sunsets, but instead we will soon have even more beautiful 10:00 sunsets. The anticipation of spring and summer intensifies. The idea that this biting winter might be coming to an end is satisfying.

fibro colored glassesNow to look at the change through Fibro colored glasses. As someone that suffers from CFS, sleep apnea and insomnia, I already have enough issues with getting restorative sleep…thank you very much. So I tend to get a bit grumpy when I have a perfectly good hour of sleep ripped away from me. I lose too many hours as it is.

 

The next irritation is trying to remember…trying to remember…trying to…well crap, I forgot.

For those unfamiliar with Fibro, it attacks the central nervous system which causes our pain levels to fluctuate and our nerves work extra hard to intensify those aches most people are able to mentally gloss over. This is why most of us attempt to live relatively peaceful, stress reduced, lives. Stress = Pain.

So what’s so stressful about a time change? This morning my wife had to work early, and I was in charge of getting her there on time. So last night became the struggle of needing to go to bed, but not feeling tired and hurting too much to go ‘try’ and sleep. Usually I have to be ready to drop off before I go lay down for the night, otherwise if I lay there for too long, the tightness creeps in and keeps me up. A lot of Fibro symptoms are cyclical…one igniting another, which ignites another. This carries on until the first issue has been reignited and it all starts over again.

Oh yeah, so I now remember what I had forgotten…damn fog. It took looking at my incorrect time piece (misinformation!!). The clock changing drives me bonkers. That’s the other issue for some of us Fibromites. We have enough trouble some days just remembering the last words that came out of our mouth…now we are challenged with making sure all the clocks have been properly adjusted. My watch and car are still living an hour in the past. I then find that I piggyback my forgetfulness with forgetfulness.

Sometimes I forget to change the clocks, on my way to change the clocks.
Sometimes I forget if I changed the clocks, and don’t know which clocks to trust.
Sometimes I forget the time has changed at all.

Life can be overwhelming with 24 hours, and almost crippling with only 23.

I sit here in my new mobile office guzzling my coffee and people watching. Who needs The Walking Dead and reality TV? Just try a coffee shop the morning after our stolen hour.

 

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Loneliness

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When I write, I try to do so with some levity and sarcasm that mirrors who I am. It allows me to take a situation and attempt to look at it in a lighter manner. Not to discount its effects, but to be able to deal with it on a daily basis. So it is with this sense of snark that I live my life. However, there are some things that are too complicated to wrap up in humor.

 

Loss of self. Loss of identity. Loss of direction.

 

When my Fibro kicked in, these are just a few of the symptoms that came along for the ride. I soon found myself not being able to work, having to give up activities that I loved and I had no idea what my future held…floating on a cloud of pain.

 

There is a sense of loneliness that sets in with chronic illnesses. I cannot say that it is more intense with Fibro patients over other illnesses…but, it is the challenge that I face on a daily basis. This invisible illness; that stalks me like prey, ready to pounce without warning; rendering me useless in the strike of a match. This is a small part of the loneliness.

 

I tend to not make plans with friends, as I tire of having to make the last minute phone call of cancellation. I tend to stay closer to home, instead of taking the long excursions to discover more of my beautiful state or visit family in California. I have to plan everything much more carefully then in days past, hoping to have the energy to last into the evening.

 

I strive each day to gain a little more understanding into my illness. A little more clarity. I spend my days now listening to my body. Translating its Morse code of aches and pains. Wanting to feed its needs so that it will strengthen instead of deteriorate. I want to build a stronger relationship with my being, so that we may conquer greatness together.

 

I must say that I do believe I am one of the lucky ones. I have an amazing wife who has stood by me every limp of the way, and has attempted to join me on this journey of healing. I have a strong, and loving family support system. They have spent many hours listening, hearing and reading about this thing called Fibro to gain a better understanding of what I am dealing with. The many miles that separate us is the largest hurdle. I also, have some incredible friends…both near and far…who have sent their loving wishes and vibes my way.

 

So in respect to loneliness, I am lucky and blessed. My heart aches for those stories I have read of people in the same boat who do not have the support I know I have. If only I was able to bottle and sell the positive energy that I am fed. I hope that any human that has to suffer will one day find the love or friendship that helps to clear some of the loneliness.

 

I am lonely, but not alone. Thank you to all that have pushed, rolled and carried me through this journey so far. And thank you to each of you that have read this post today. With each word shared, a little loneliness is demolished.

I am not going to Blog today…

I am not going to Blog today

Even though I have a ton to say

I am not going to Blog today

Ok, maybe I will anyway

                                     -Me

What a great weekend (well, great Friday night). My wife and I spent the evening wandering around downtown to celebrate her birthday. It was a great evening, but I could tell within the first block that it would be a looong evening and weekend.

Lately I have been brainstorming an idea for another weekly Blog. I am surrounded by so much beauty here in the Northwest that I have decided to start heading out on a weekly excursion and iPhone shoot the scenery and share it with everyone to enjoy. Since we were out wandering on Friday, I decided to take a few shots and give it a try.

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Recycle – Repurpose – Reuse

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Hawthorne Bridge – Portland, OR

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Portland, OR

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Voodoo Doughnuts – Maple Bacon Bar – Portland, OR…And most importantly…a very happy birthday girl.

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So now I can sit here and reflect on what an amazing night we had. It was bittersweet for both of us, as it isn’t very often we can do this anymore with the damn Fibro monster around. I never did get off the couch yesterday and am dealing with not only the fibro flares, but my weakened muscles are screaming out as well. So I end now to return to the comfort of a horizontal position, and I am thinking to myself…I wouldn’t have changed a thing and every ache is well worth the smile on my wife’s face.

 

I would really appreciate any feedback you might have since I am just starting out. I am getting a ipad next week which will help edit some of the filters, but I was curious if there were any decent, free programs I can grab off the internet.

 

Thanks for reading today and have a great rest of your weekend.