Opposite Day

Like Alice looking through the looking glass most of this illness seems like a cruel homage to the topsy turvy.  Fatigue unrelieved by rest.  Exercise making you worse.  In my case healthy foods making me sick.  Immune system shutting down for viruses, bacteria and fungi and over reacting to the environment you live in.  Smart people with cloudy minds.  Thyroid over-reacting with Thyroid stimulating hormone not responding.  Opposite day - I hate opposite day. Its hard to function day by day living in opposite land - everything distorted and confused.

Opposite day effects all of us, the argument with a co-worker that you just can't see their point - A basketball game where every call goes the other way, every rimmed shot leaves the basket.  The beautiful queen with a heart of stone.  Nothing is as it seems and my opposite day has seemed to turn into my opposite world.

You start questioning up from down and left from right.  The sane from the insane.  I recently read an article that made reference to the fact that chronic fatigue funding was cut off in the early 90's by the NIH because it was deemed a psychological illness.  As someone who was described an anti-depressant to gain weight when I was trying to hover above 100lbs - as someone who was point blank asked by an endocrinologist if I had an eating disorder - as someone who went to a doctor who said because I had a few good days I couldn't be diagnosed with chronic fatigue, despite it being over 5 years of dealing with crazy health issues - as a patient who stopped being patient - who wouldn't start losing trust and losing faith in those we were suppose to trust.  If just one of those many many doctors I had consulted in the early days just said - "I don't know" rather than "you are mistaken" perhaps on the days when I can barely think straight, find it difficult to brush my hair, I wouldn't constantly have to remind myself that this is real.

Some people may think that I distrust all MD's because I see an NMD for my treatments, and don't be fooled because I don't trust most NMD's either - CFS is a complex multi-dimensional illness and if you find the wrong doctor in the traditional or "complementary" field you can fall down the rabbit hole.
I haven't read Alice in Wonderland in years, so I can't remember how she found her way out -

Freedom

I MADE IT TO THE POOL!!!!!!!!!!!!!!!!!!!!!  When I am there I think, how can I not be here every day, my love for this pool, being surrounded by vacationers, and the calm of the Biltmore grounds, I realize the only reason I wouldn't be there is if I was too sick to make it...ahh that again.

But today I made it and blissfully swam a few laps and soaked in the cool April day. The water really helped the ache the Phlebitis has caused in both arms, and hoping that has a bit of a lasting effect. I may be sore in a bit, or exhausted later, but the last hour was a taste of possible freedom to come!

A Room with a View

No blood treatment today, not strong enough - etc.  I had a hydrotherapy and then colorpuncture treatment  - which I will someday explain.  Got back to the house and was physically beat.  I hurt everywhere and after dinner went straight to my bedroom here in Phoenix.  As usual, my first thought was, damn I love my sheets.  They're not Frette but they are sure close and I am so grateful that my mom brought them.  The second thing I thought was - wow - I am ready to go home, but I will sure miss this view.  While I have a beautiful comfortable home back in tree lined Elm Grove - I do not have this western view.  If I was here in the summer, it would be a punishing heat - but January til April it has been heaven on earth.  And while I lie in bed, Sophie at feet I feel so lucky to take in this site....

This was a few nights ago....

And my pretty flowers...

I have four appointments left before I head back home, and the last few days I have been anxious to "get it all in" and take advantage of being here.  But today, as I left, I told my doctor I have realized that   whatever I have done or completed - it is enough.  She had earlier told me how proud she was of me, that I couldn't have tried harder, stuck it out tougher and we have made significant progress - forest through the trees - you sometimes need someone to see it for you, and eventually you may believe.

And when you don't believe yourself, let the burden of faith and hope and love be carried by someone else.

What If...

I wrote a poem in grade school titled what if...probably should have been a red flag.  When others were writing about ponies and rainbows; I was pondering the what ifs the world contained.  I also wrote a "will" of sorts and gave it to my sister, telling her (nice one Heather, she was five years younger) that if I died I did not want to wear some stuffy suit or dress for eternity - I wanted her to make sure I wore my favorite light pink satin two piece pajamas.  I have battled that what if static in my brain as long as I can remember.

In the book HSP - Highly Sensitive People, it explains this group of people that I seem to fall into and the benefits and strengths this highly sensitive nature can bring.  But unless channeled in an appropriate manner it can be a constant struggle to fend off its destructiveness.

I had to work hard the last few days to push the what ifs aside, mainly because the last two blood treatments left me both physically and mentally bruised.  My one vein most likely has mild Phlebitis and my arms are both sore to the touch.  I don't mind the minor pain, and thank goodness I currently am carrying some extra pounds otherwise I might be confused with a Heroin addict.  What I do mind is the spinning wheel that my mind has become going through the what if scenarios this new symptom has brought with it - What if I have a clot, what if I can't get any more treatments, what if I shouldn't have done the last treatment, what if I get a more serious blood infection, what if I leave Phoenix before the arc of calmness has come back to reside, the never ending tributaries my mind can partake in are endless and exhausting.

My physician called me last night and suggested I come to the office later in the day so I could get myself better hydrated prior to my appointment.  Its been a welcome advent of time not to be rushing around to eat rest eat leave so I took the opportunity this cool day has brought and Sophie and I went out for a short walk.  FIFTEEN MINUTES i repeat FIFTEEN MINUTES i was able to walk without my heart pounding, legs aching, instead I had that feeling as my body as if leaving a cocoon was craving the movement it so often is denied.

Chronic

The forest is deep, the trees are tall, the sky can not be seen.
East, West, North or South, which direction will i be free.
Neither path has been paved, no direction signs to follow.
Ruby shoes nor crystal balls contain the answers, must i beg and borrow

We expect those sick to be positive and hopeful when the rest are not
Wear fancy colored ribbons and partake in long walks
All to aid and abet the spirits that are robbed
I am tired and spent, been poked and prodded
Is anyone even out there - to hold up the downtrodden

The sun is setting and I am blessed with the view
This moment will pass and I no longer will be blue
I must stop now before I make my mom sad
Don't worry its just a poem and sometimes you just need to feel bad

Identity Theft

Yesterday I broke down - ugly tears - in my doctor's office.  It happens, and I really didn't even know why at the time...I was just so overwhelmed and the fact that my exodus from Phoenix is rapidly approaching put me over the edge.  But while my head was buried in my hands, my back violently moving up and down as I tried not to hyperventilate my doctor patiently waiting, and asking what I was feeling behind the obvious - and that's when it became more clear - in the past I have been focused on what I have missed out on over the last few years.  But in that moment it came into focus, the subtle shift was this illness has hijacked my identity - an identity i was proud of - an identity that i fear is forever out of reach.

I recently removed a post briefly describing the loneliness this illness has brought with it - every time I realized that was out in cyber-space it made me cringe - not that it wasn't the truth, but it seemed to not accurately describe what I was feeling - and after the breakdown in the office - that evening I realized the aloneness stemmed from this identity theft.  This illness effects you physically but it takes a mental toll.  Your brain is often foggy, its hard to concentrate, so I often no longer feel present even when I am interacting with others.  The holiday's and special occasions are the worst, and they used to be my greatest joy.  Give me a wedding any day - I loved the socializing, the dancing, the fun.  Now, all of those joyous events are events to manage, to use all my energy to act as if I feel fine when I am often struggling to stay on my feet for extended periods of time.  I will forever be grateful that this illness did not take its massive hold in my twenties - because I loved my twenties and all the celebratory events that it contained.  When I first moved to Phoenix, shortly after I arrived my good friends were getting married in Michigan.  I flew back to Milwaukee, the next morning drove solo the six hours to the other side of Lake Michigan.  The car ride filled a McDonald's stop (a food I haven't touched in years), cell phone calls home touching base on my progress and the same Van Morrison CD on repeat.  I got to the hotel an hour before the wedding, got myself together and full of energy headed off and laughed, drank and danced all evening long- unlike Cinderella the clock never struck midnight and took it all away.  That event seems like a mirage, and most events now feel like the Fairy Godmother is lurking over me, reminding me that the clock will strike at any moment in time and with a wave of that wand she has the power to strike and poof the joy is gone.

Without presenting my CV, let's just say, my life before this illness, was bursting with commitments and obligations that I loved.  I loved feeling useful, being helpful, being dependable, being present.  In my mind I am none of those things anymore and it honestly breaks my heart and chips away at my soul each and every day.  I didn't do these things for any reward, it was my natural state, it was how I found joy.  And as family and friends have entered their 4th decade their lives are full - full of their children's activities, new friends, careers that bring with it fulfillment and another social circle, my life seems to be closing in on me - and its a loneliness, disappointment, and void that is hard to describe.

I have so many blessings, those blessings often become a cruel irony, the perpetual carrot on the string that the horse will never chew.  I would be looking forward to taking my niece to French classes on the East side - I would be traveling - I would be working - I would have seen my good friend's new home - I would have traveled to Denver to visit numerous friends that have relocated there - I would be going out to dinner - I would perhaps be planning another trip to France to celebrate my 40th birthday - the list goes on and on and on....but the most important thing is I would have the freedom to help my friends and family the way I used to.  I would host the Holidays rather than the effort it requires now to just show up.  I would feel like myself, more importantly I would be myself.

This illness has come to define me, and today as my hands sweated, the first vein on my left arm infiltrated as the "clean" blood was re-entering my body, not enough time to move chairs, so I was doing a yoga twist to give my right arm, I tried not to cry - I really did - took deep breathes - told myself to buck up and stop being a baby - and this whole thing seems like a dream.  When the treatment finished I was "brave" and looked at the remnants of my blood that remained in the glass "jar" (okay i can't think of the term) but anyways, the closed container that housed the 1/25 th of my blood prior to going through the glass slide that houses the UV filter and what was left was as I said, "disgusting".  These black globs of debris covered the inside of the container - the debris of bacteria and viruses - the result of die off.  If I hadn't seen my blood go through this process so many times I wouldn't appreciate the distinction between clean and dirty blood.  Ahh a visual picture of my insides that appropriately matched how I felt.

I haven't felt very strong, brave, resilient the past week - but this treatment forced me to see the reality of what my body is dealing with, and suddenly I didn't feel like I needed to convince myself that I am sick - I try and forget - I try and pretend - but reality has come crashing down again - and I am doing my best for the day I wake up and the first thought in my bruised feeling body isn't - "how am i going to make it through this day."

My doctor, the kind soul she is, reminds me constantly this has been a brutal visit - every day you are working - your body is fighting and that is the good sign - you are responding rather than existing in the  state of stasis.  I just want my identity back - my 40th birthday is one month and approximately 10 days away - and there will be no greater gift than this invisible thief  apprehended and my identity restored.  May anyone out there suffering from a chronic illness find peace.

Rhythm

Thursday a few hours after my treatment, I walked over to the pool.  On the way there my heart was pounding, I thought about counting the steps, but then that seemed a bit OCD, and I have enough issues so will refrain from adding that to the list.  While there, I got into the pool and did a few slow laps, laid in the sun until it seemed way to hot and walked back.  On the way back without thinking, I said out loud, "its not hard to walk".  It took me by surprise and its even a difficult nuance to describe to others when its hard to understand myself.  Once again an effort I knew was there but thought about in different ways...such as I am walking too far, or I'm fatigued thus its hard to walk, but not until the effort was removed did I see it in reverse.  It wore off quickly, but a glimpse was there - I will take the glimpse.

I'm relaying that story more for myself, because the last 24 hours have been rough.  I feel starving but everything I eat takes energy I don't have, or doesn't taste very good.  The mundane eating routine that I have been accustomed to due to the excessive food allergies have gotten me down.  I'm craving something as simple as a banana or a pear.  I am in a mental state that despite all the progress I feel weighted down and overwhelmed by the enormity of my loss of rhythm.

In fifth grade our choir sang this song, "Rhythm of Life" and bits of the lyrics along with the image of our theatrical and frustrated chorus teacher Mr. Tomcheck  keep running through my brain. 

"Stomp Stomp (left / right) ..."Rhythm" vocal high...Stomp Stomp (left /right)..."Rhythm"....Stomp Stomp..."Rhythm of LLLLLIIIIIIIFFFFFFFFEEEE"...."is a powerful beat" Snap Snap..."puts a rhythm in your finger" Snap Snap "a rhythm in your feet" ....hmmm hmmm...."to feel the rhythm of life" (high vocal)" "to feel the powerful beat' (low vocal)...."to feel the rhythm in your fingers, to feel the rhythm in your feet...""Baby you've got the" dun dun "Rhythm (high vocal)" dun dun "Rhythm (low vocal)" "Rhythm of LIFE!"

I can still remember being on those risers belting out that song.  In my quiet grade school Mr. Tomcheck was one of these things not like the others, with his bleached blond hair and short temper, quite a contrast to most of my maternal teacher's up to that point.  His constant strive for perfection out of a bunch of kids was impressive.  In hindsight, perhaps he was someone who had dreams of being on Broadway...name in lights....directed by famed choir director...Mr. Tomcheck - instead he tended a beautiful rose garden in a house less than a mile from our suburban grade school, but damn if he wasn't going to make it the best grade school choir ever - even if it meant a red face that often looked like it would burst and a chair flying through the room.  

I feel a bit like Mr. Tomcheck, working below my league.  Mr. Tomcheck did his best, by making us our best - just like I am trying to do, make the best out of these circumstances.  But the best just doesn't seem good enough.  And today I thought - I'm never going to be my old self again - and of course no one can turn back time (Cher reference unintentional), but some days even close to my previous self seems out of reach.

I try to create a rhythm,  but it is a manufactured one.  This illness has become the puppeteer pulling my strings determining the beat.  Its tough at times to remind myself that those around me have the fast paced rhythm that I too enjoyed.  I have to consciously tell myself when phone calls get un-returned, emails unanswered that I use to be like that....have a rhythm, have too much to do in too little time.  Instead now I spend too much time watching the world go round and round....again song reference unintentional...I must be channeling my music teacher! 

I never knew Mr. Tomcheck in a personal capacity, so obviously I am just conjecturing - but even if he didn't have those dreams, he deserved them - he was that good.  Because thirty years later, I still remember our Michael Jackson montage,  the red wigged Annie tribute that a handful of us bought to local Nursing Homes, and through out the years that song, Stomp Stomp Rhythm....comes sneaking out from my youth - reminding me there is a rhythm, I might just have to change the beat.

And while I may fight to gain my old one, there is no denying Mr. Tomchack you always claimed yours.

The following link is another wonderful tribute from someone who is a better position to do so....from A Composer's Life, By Daron Hagen

Remembering Wally

Here are the Lyrics I found....


When I started down the street last Sunday

feeling mighty low and kind of mean
Suddenly a voice said go forth neighbor
spread the picture on a wider screen
And the voice said neighbor there's a million reasons
why you should be glad in all four seasons
Hit the road neighbor leave your worries and strife
Spread the religion of the rhythm of life

Chorus
For the rhythm of life is a powerful beat
Puts a tingle in your fingers and a tingle in your feet
rhythm on the inside rhythm in the street
and the rhythm of life is a powerful beat
To feel the rhythm of life
To feel the powerful beat
To feel the tingle in your fingers
To feel the tingle in your feet (2x)

Verse 2
Go and spread the gospel in Milwaukee
Take a walkie talkie to Rocky Ridge
All the way to Canton then to Scranton
even tell it under the Manhattan bridge
Bridge
(Fast 3x)
You will make a new sensation
have a growing congregation
build a glowing operation
here below
Like a pied piper blowing
Lead and keep the music flowing
Keep the rhythm go go going
Go go go

Doobi, doobi, doobi, doobi, doobi, doobi, do-bi
Doobi, doobi, doobi, doobi, doobi, doobi, do-bi
Doobi, doobi, doobi, doobi, doobi, doobi, do-bi
Doobi, doobi, doobi, doobi, doobi, doobi, do
(2x)

Flip your wings and fly up high
Flip your wings and fly up high
Flip your wings and fly up high,
Fly, fly, fly up high

You can do it if you try
You can do it if you try
You can do it if you try
Try, try, try to fly

Like a bird up in the sky
Like a bird up in the sky
Like a bird up in the sky
Fly, fly, fly up high

Chorus 3x
For the rhythm of life is a powerful beat
Puts a tingle in your fingers and a tingle in your feet
rhythm on the inside rhythm in the street
and the rhythm of life is a powerful beat

Fourth Grade Choir

This you tube video is not my choir - but too funny - not to brag - but I think we were a bit better - at least in my memory!!!

As I read those lyrics and listen to that choir - memories come flooding back, the importance of dictation, precise, precise, you have to be precise!  And apparently its "tingle" in your fingers, not rhythm.  I think we wore straw hats, and red blazers....