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....  

Oxygen

Unconditional 

I wasn't incorrect when I said the next 30 days would be a push.  I was brushing my teeth when I just kept thinking, blood, blood, blood - So today, I wasn't surprised when we were at it again, and I didn't cry - wasn't as nervous, I was just hoping I would feel better.  Last night I felt like I was starving for oxygen - despite not having any Lung conditions.  That's another way to describe what if feels like to be so fatigued, your cells just don't seem to be garnering their duties.

An amazing thing happened today after my treatment - I felt instantly better.  As we were driving home I couldn't stop saying it out loud -  random thoughts..."wow, this is what if feels like to feel normal, I feel like I can breathe better - please last, the tightness ever lingering in my throat has diminished - wow - I feel normal, everything is clearer, sharper." A calmness that also rarely makes an appearance also washed over me - peace, a moment of peace from the usual turmoil that seems to be raging inside.

That is what would happen in a healthy person, the UV Photophoresis, plus induction of oxygen would give you a lift, but when your sick it's properties are helping your body fight - therefore all the flu like reactions post treatment.  Hopefully this increase in my tolerance for the treatments will begin to have exponential pay-offs. I am thankful. I am hopeful.  I am thankful.  I am hopeful.

Inventory

I often get overwhelmed that I am not getting better fast enough.  So today at my appointment we discussed where we have been and where we are headed.  This illness doesn't often have a linear course - so we are doing the best we can.   I feel like I have been fighting this illness for a long time, but when we broke it down, I realized that wasn't exactly correct.  Last winter was the first time I spent over 2 weeks in Phoenix for treatments, and the majority of the time was not focused on my chronic illness, it was trying to get my strength back from being beaten down by the winter.  I could handle very little and the focus was getting my lungs healthy again, so I wasn't constantly using the steroid nebulizer to deal with the reactive airway disease brought on by so many colds.  Reactive - that seems to be theme - I have a reactive system.

Therefore, October of 2011 was the first proactive step of getting ahead of the winter cold and flu season. I made it through the Holidays and headed here to Phoenix in January.  January 10th - April 20th is just over 3 months, approximately 15 weeks - add that to the 6 weeks in October and that's 21 weeks out of 52 in the year - to treat a chronic illness that I have had for at least 6 years - or 312 weeks.  All of a sudden hope became a lot clearer - I know have a plan - for the first few years - I was sailing without a GPS.

I have been able to consistently write, something I could only do in my head a few years back - today I drove to my doctor appointment by myself - confident that no matte what treatment I had I could handle driving home.  My greatest fear I told my doctor is spending all this time and energy and getting almost better - then doing too much and to slip back worse than before.  So we both agreed that the likely course of action would be to be a similar protocol next year, and then be confident we can wean off.  This protocol would be different if I lived in Phoenix - but I don't anymore and the summer months here are as detrimental to my health as the winter in Wisconsin - extremes - my body doesn't handle extremes well.

Time despite its regimented 60 seconds in a minute - 60 minutes in an hour - 24 hours in a day - 7 days in a week - 52 weeks in a year - despite this mathematical exactness defies rules.  It speeds up and slows down when we wish it would do the opposite.  Its an eternity and and instant - and I need to patient with time.

But today I needed a little perspective on time, and I feel grateful - I haven't been attacking this illness as long as I have been fighting it.  I am not swimming as much or walking as much as when I first got here, but I am doing much more difficult treatments, so I am listening to the voice inside that says rest - your time will come - just rest.  Its not easy, having faith in an unknown and different path - but if this works for me - I have made a promise to myself that when my old energy - life force - vitality returns, I will do my best to help others that are making little or no progress.  But right now I can only fight one battle - my own.  And I'm scared to even say it - but I may be gaining ground.

B.S. - not what you think..I'm LOL

Some people are just funny.  I know many such people, and it helps.  Finding humor in any situation is the surest way to ease the pain.  And as I like to do, give credit when credit is due, a thank you for the humorous exchange of text messages I received last night when I did not have enough energy to meet an old friend who happened to be in town...trying to be honest about why I was "on the desert"- in the quick exchange of a text message is not the easiest, but I didn't want to lie or make up some false excuse- and the forthcoming exchange I got made me laugh - and laughing always makes you feel better - so maybe I will try some 5 hour energy drink - and I will definately blame Wade when everything else fails - why not, who knows... (and I apologize for a bit of inside humor here, so please insert your own good memories of old friends)

There is a huge difference between someone making "light" of my situation and someone making the best of it using humor, something when I am a bit isolated in the day to day grind of it all is easy to miss  - and the sarcasm brought me back to our high school days, days spent dancing in LaBott's basement to Neil Diamond, late nights of "phone fun"..."ma'am we have your cat..", Three Guys in Jumpsuits making crazy videos.  It was nice going back in time, a time where there were plenty of problems, but problems that the heaviness of  it all doesn't' sink in or isn't the burden of a 16 year old.  While we were in the basement, upstairs was a grandmother fighting dementia, a mother fighting cancer, and hopefully the hustle and bustle of teenagers in her house provided a necessary distraction rather than an annoying inconvenience.  I am pretty sure, the later may have been truth...but again, the protectiveness of a mother came out, putting her children's escapism in front of her own privacy.  Thank you Nancy - you are missed.

When my niece was here she kept taking my phone and taking massive amount of pictures and videos, and when I went through the 300 plus of them what caught me off guard were the images of myself that were caught in the background, and the story they told.  I noticed the pained look in my face, the holding on look of getting by when I didn't realize someone was looking, the fingers pressing on my temple.  These pictures and videos made me sad, and I realized I don't laugh as much since this illness.  Those around me day in and day out are constantly helping me with one thing or another, and with that spontaneous moments of laughter are fewer and further between - its not any one's fault, its the reality of the demands and stress this illness ripples through those you love, the exhaustion of the sameness of it all - and those text messages last night from someone on the "outside" were a pleasant distraction - and I hope that they are the new normal in the near future.

Rainy Days and Sundays Always Get Me Down...

Friday, the morning after the MU game, I didn't wake up until 10am.  When I did, it was difficult to move, I started one of my mini mantras - get out of bed...get out of bed...feet on ground...head off pillow...so like a band-aid I ripped myself out of bed and slowly got to the task of making breakfast.  Again, the single minded thinking began, and no sooner am I eating breakfast when a new mantra begins... eat..back to bed...eat...back to bed...

So by 11am I was crashed back into bed, my doctor appointment was scheduled at 1:30pm.  So as my head plummeted to the pillow I was doing a mental calculation of how long I could lay down before I would need to get up, get ready and eat before heading out...12:15, 12:30 at the very latest - because I eat slower than black molassas pours I need extra time.  At 12:45pm my phone rings and wakes me up from a deep sleep, its my mom seeing how the game was last night (minus the loss) I,  barely audible, tell her I have to call her back, disorientated and now wondering how the heck I am going to get it together and get to my appointment - I contemplate not going - but its a Friday, and if I don't  make it and miss out on a treatment that could potentially make me feel better, it puts things off three entire days.  So I slowly make it out of bed, mantra now - juice - get ready - juice - get ready.  The second I have a  sip of juice I feel like I am going to be sick - so I make it to the bathroom - I want to just forget it - who cares - its one appointment.  I am thankful I am not throwing up, but I have the nauseous chills and goose bumps on my arms, but thankful that my stomach is at least moving in gravity's direction.

I make it out of the bathroom, I look in the mirror and can't believe that is me staring back - I look old and tired, vibrant would not be an adjective that comes to mind.  I am just about to throw in the towel and think I just can't' F'ing do this anymore, I don't know how I can keep doing this, like you do when you are in the middle of a dense forest and can't find your way out (not that I have ever been in the middle of the forest, but I imagine)  and the "ding" on my phone goes off - I go to check it and this is what I find...

and I find the strength.  I have a blog that I haven't published about Kids - and my opinion on the annoying phrase that parents often use that "they never have known love until they had a child" and I won't get into it now but to say, I get it, I think its a misdirected quote, but I get the jist.  I believe what people really mean, is you will never know what it feels like to be given something so fragile, that depends so profoundly on your actions.  I understand the will do anything for your children that stems from a visceral place and I understand what it feels like to fight when you feel like you have no fight left for someone other than yourself, because if it is only a fraction of what I feel when I see my niece and nephew, it is enough to break you and build you simultaneously.  Much of it is stems from a "selfish" place of "I don't want to miss a thing" while the other can't bare to not be there to help them from whatever they need...

So, as I left and re-entered the bathroom many more times, called my doctor and said, "I know you tell me not to call when I am going to be late, but I am going to be very late, so let me know if you can't fit me in..." and the secretary doesn't call me back - I garner what strength I didn't think I could find and I make it there.  

When I get there, we determine its time for round 3 in one week of the UV-Blood Irridation - and I can't help it but I start to cry.  I just feel so awful and the thought of the treatment, despite knowing I will most likely feel stronger in the long run just seems like too much.  So, I focus hard in my mind of the rainy day picture and hugs sent via the air stream, and close my eyes and I do it.  I do it for the hope that I feel better for myself, but what pushes me is the hope that my niece and nephew get the aunt that existed before they did.

When I leave the office, I ironically thank my doctor for being so patient - "calmly waiting" as she did, careful with my fragile self - knowing when to push, and use extreme care when the first vein didn't work and she asked me to hold the cotton and I'm so nervous I don't realize that the tourniquet is still on and I hold it and bend my arm - not a good combination to stop blood flow - and she patiently coxes my arm down and holds it herself -tells me to breathe and think of something pleasant - and through a forced smile I did.