Saturday, March 31, 2012


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 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

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
(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

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

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....  

Tuesday, March 27, 2012



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.

Monday, March 26, 2012


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.

Sunday, March 25, 2012

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 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 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.

Loathing and Longing

I only read one other blog about Chronic Fatigue, Sue Jackson's - not because other's aren't good or insightful - but as I have said before, you can fall down the rabbit hole way to quickly if you start reading too many stories - or at least I can.  I really enjoy Sue's blog and a blog that you connect with is like meeting a good friend for the first time - you just click, you don't know why - but you feel connected to this person.  It seems that often what I am dealing with or feeling falls serindipitously with something Sue has wrote.  And this happened again this weekend.

My family are die hard Marquette University basketball fans.  When I was little, we had six season tickets, so most always it was my grandparents and my parents and my aunt and uncle's ritual.  On those nights, since my aunt and uncle lived closer to downtown, my sister and I would stay at my cousins where we would all hang out while our parents were at the game.  Most times it was pretty uneventful, but put 5 kids together and things happen.  The pizza gate incident and the alarm incident both taking place while our parents were at MU games.  Pizza gate, in hindsight, was particularly  funny, at the time not so much.  I'm going off shady details but my Uncle and cousin had gone to pick up pizzas, and they had to wait forever, and there was some confusion - so they left and went elsewhere.  So after our parents left for the night, (and i'm not even sure now if it was an MU game) but anyways they left and about an hour later the door bell rings and its a pizza delivery man - and my cousin and I are scrambling for about 40 or 50 bucks - it was a lot of pizzas.  There was a frenzy in the house, as we of course think we could go to jail for not paying for the pizzas - not putting two and two together, that these are pizzas from a different place, and we didn't order them, it was a prank - the days when kids actually did punk each other, where some "mean girls" sent pizzas to my cousin's house.  I also remember the after math where my intimidating attorney uncle grilled the "mean girls" about what they did, how they scared us, what were they thinking - I'm sure my cousin Kelly must have been mortified - but you don't mess with my Uncle.

Alarm gate was also controlled chaos.  My Aunt and Uncle's house had been broken into, after which they got an alarm system.  The alarm came with a little remote control that looked like a garage door opener that my Aunt kept on her bedside table.  If you thought someone was breaking in, you hit the button and the loudest alarm ever would immediately start blaring.  So on this night, our parents called to check in on us from a restaurant and my little sister at the same time hit the garage door looking remote and the alarm begins its deafening blare, and we are all screaming, and some of us crying, and they are yelling at us through the phone to just go downstairs and turn it off!  I still am laughing at how crazy we got - my cousin Tom and Katie being the "brave" ones finally got the courage to go downstairs to end the chaos.

Well, that was a side trip down memory lane, anyways it was a huge treat to be able to go to a game when I was little.  Marquette games are social events, besides basketball viewing, the half time ritual of heading to the mezzanine and catching up with people you know well and others that you really only see during the long winter months - when the sky is gray and the air is cold - MU gets you out the house -

The last few years have been really good to MU fans, and March Maddness is a highlight.  My Uncle, the Commish - has always been the organizer of a pool - very legal I might add - and last year was the first time he wasn't bogged down by a huge binder of everyone's picks b/c we finally went cyber!

This year we were thrilled when we got to the place we are staying that the cable had the Big East network, so we didn't miss a game while we have been gone - and then the icing on the cake was that if Marquette made it to the Sweet Sixteen they were in the West Bracket and would be playing in Phoenix - and they made it!!!  So Thursday night was my big outing - I told my doctor I couldn't do anything stressful because I needed to make it to the game that evening - when we got back I went immediately to bed, and like many times before I was laying there at 4pm thinking how am i going to make it to this game - one step at a time - I made it out of bed, into the shower, and then had a big meal so that I wouldn't be hungry - makeup - lipstick - I can do this.

Marc had gone ahead of time and sold our two extra tickets for the previous game.  We found parking right in front of the stadium, but when we got in - the chaos started.  The Phoenix arena is very deceiving - they built this beautiful entrance around a crappy old stadium.  So you walk into an entrance that is slick, shiny and new.  It's airy and spacious, and then you keep walking and you enter what felt like a prison to me - Marc had said, do you want to wait out here for a bit - and there was only 20 minutes before the game, so I said no - let's go in - not realizing what I was entering.  First the noise - the people taking our tickets are followed by others yelling - "No Re-Entry" "No-Re-Entry" my prison metaphor taking on a whole new meaning - and now there is no normal flow of traffic - there are people entering for the MU/Florida game and disappointed fans leaving from the previous game - we only have two seat sections to get to but we are not moving.  Its a hot stale air mosh pit, and my eyes begin darting all over and the noise and commotion are all too much for this fragile nervous system.

When you live such a contained life for so long, this is such a shock to your system.  I'm near tears, and I know I can't leave, and I am just looking at everyone else, thinking "does this only bother me?"  Surrounded by people and feeling completely alone.  Marc gets in line for drinks, and I duck to the nearest gate, walking under the 7 foot cement entrance to the court - and my mind keeps taking it all in - the what ifs...I call my mom, but its too loud to hear, my legs feel weak beneath me and everything is pretty blurry.  We make it to our seats, and as my inner dialogue is raging, a piece of home is sitting right in front of us.  I was hoping we would see our friends there, but with all the MU fans, found it unlikely, and like a gift, there they are - people I know from home.  The ritual of our home stadium is here in Phoenix, and a bit of calmness enters me.

We lost the game.  The entire first half I was just focused on the fact that I made it there - and adjusting to the "real world" - the second half I actually was able to enjoy myself - but when we got home I was exhausted.  Much of it do to participating in something out of my comfort zone - I have always hated crowds, but it never before would mean the next day I could barely move out of bed.  But that's what this illness does, mental and physical stresses both have the ability to wipe you out.  Your reserves are gone.  And as I tried to get out of bed the next day - one foot in front of the other - there was no denying the effects of the outing the night before -

I thought about the previous night, watching all the people, wondering what else others were dealing with hidden from view.  Much like the facade on the stadium, smoke and mirrors, all of us have days when we put on a pretty face, smile, interact, we appear healthy and normal but on the inside there is no running from the worn out, tired narrow cement hallways, that are the true reality.

On Saturday, I read this post - by Sue - and it was comforting to be understood.  It's a quick one - take a look - if you read the comment section, there is one in particular - that rings so true, people not understanding the effort you make on a daily basis to be present, to make it to things, etc..something i could so relate to.
Loathing and Longing

Wednesday, March 21, 2012

A Patient Patient

I am not an early person, most often despite trying my best I am inevitably late.  It was quite chronic in my mid twenties, and I was one of those people that my friends literally told me a Christmas Party started an hour before it did - I remember walking into the restaurant with my friend Melanie (who came with me, but didn't know the people throwing the party) and she said, "are you sure we are at the right place?" and sure enough about twenty minutes later everyone started filtering in - i was twenty minutes early by being forty minutes late!

However,  this all changes when we are talking about doctor appointments, I hate being late.  My doctor just said to me yesterday, "you know, you don't have to call if you are running late, I know you will be here"  I am lucky, the longest I have had to wait for an appointment since I have been here is about 45 minutes, and that was one time only.  I remember being at Mayo Clinic and that's all you did is go from one waiting area to another.  All of us patients duitfully sitting on our chairs, staring straight ahead, waiting for your name to be called.  Then you wait in another room while you are waiting for the doctor.  Us patients are expected to be patient.

So the other day as I raced to get to my appointment in time, only to wait to be taken, I was curious about the word patient.  Turns out it is taken from "suffering" from the Latin 'verb patior' "i am suffering" and the Greek 'paskhein' "to suffer"- I feel like one of those kids from Spellbound - can you use it in a sentence - "I am sick and tired of being a patient patient".  Some sites go on to say that as a noun it refers to the "capacity for calm waiting" "someone who suffers their affliction with calmness and composure." Hmm - calmness - not really - composure - I usually put on a pretty good act.  It interesting that now many health care facilities use other words such as "client" or "resident" in the case of Nursing Home settings, to "empower" us patients - lets cut through the BS most doctors expect a patient to be just that - I am always  patient with my current physician because she deserves that respect - others I have encountered have gotten anything but a calm and composed patient patient - I can thank my grandpa for that genetic trait...
Patient Word Origin

My dad's father George was a notorious impatient patient.  After his open heart surgery the surgeon came out and yelled at my dad saying, "your father is the worst patient ever!"  He was known to call for a drive by pick up outside of Colomba St. Mary's - my mom remembers clear as day driving on the East side of Milwaukee as George stood there on the street with hospital gown and his coat, spouting the "F" bomb and wanting to get the hell out of that place.  Rules.  Patients are expected to follow lots of rules.  George was never fond of anyone telling him what to do - especially a doctor - as he said - "your paying for them, not the other way around."  He couldn't stand the white coat superiority complex that many had, when knowledge was a guarded secret power before the days of the internet.

So I did get lucky where I never had that "doctor as God" complex, and only push back when I have been pushed to my limit.  Despite all that,  you still won't catch me making doctors wait for me.  I know what buttons not to push.  I'm not stupid, and I recognize the difficulty of doctors striving to be on time. I'm lucky that my appointments aren't scheduled into 12.5 minutes - like most insurance companies dictate - which is a recipe for disaster.  So I sit calmly and composed waiting for my name to be called, because not only do I respect my doctor's time - more importantly I am mindful of the other patient patients like myself, and will not impose on them any further calm waiting than is necessary.

Quick Blurb

I said I was ready for the 30 day push - and yesterday was another first, first time I had two blood treatments back to back.  And this morning I feel like I have been beat up - but as the morning has progressed I am feeling a bit lighter - which could be due to my new Clinique Eye Illuminator - even my doctor was surprised - not with the eye illuminator - the two in two days!  Last year I only had - if my memory serves - which it probably doesn't - two blood treatments in six weeks - I have had now four in one week.

I said to my doctor yesterday - this treatment is like a bad relationship - you love it and hate it at the same time.

Monday, March 19, 2012

Third Time's A Charm...

Its a bit quieter here today.  My sister's family headed home, and I will miss the constant random hugs and "i love you heawa" that a 3 year old gives so freely.  And little GP with his constant chanting "pa pa daddy" "pa pa daddy".  I'm really happy that my parents are here for a few more days, and then its the final 30 day push.  And today, we seem to be on track, because I once again had another blood treatment, so I am getting stronger and able to handle more, but handling more also meant a "healing crisis" as they are known, chills, body aches, headache so I am currently in bed - but my mom stayed home from golfing to hang with me -

People often wonder why I don't take Diflucan for the Candida,  Antibiotics for the Staph and Strep, and then there is the CMV and EBV elevated titers, I could try some anti-virals - but there are a lot of problems with that - first, it doesn't solve the problem of a dysfunctional immune system.  I have read many blogs of individuals on years and years of antibiotics and they still have infections, and then what has that done for their innate immunity but possibly create and antibiotic resistant infection.  You can also think of antibiotics as sweeping through your intestines, and the infections can seep into the crevasses of that very long intestinal tract, and therefore they dig deeper into your system - thus only to re-appear later.

My goal is a cure, not a band aid that could also make me worse off than I am now.  Tonight my "favorite" medical correspondent Dr. Nancy Snyderman spoke just on that - the World Health Organization's extreme warning of where we are headed if we don't stop the mass overuse of antibiotics.  Medicine got themselves into this problem, and I often find that Naturopathic Doctor's face a double standard, people question everything that we do, why why why - yet there is a massive amount of individuals on anti-depressants despite study after study showing that they alone are no better than a placebo.  But yet the ND's get the constant scrutiny, and I am a bit tired of it - I am trying to get to the source, and build up an immunity that was destroyed somewhere along the way - perhaps even because of  the traditional medical worlds narrow focus on healing.

Once again, don't get me wrong, I believe there are fabulous MD's out there, but the focus of Western Medicine has become so specialized that the chronic illness have gotten lost in a sea of specialists.  And I went to them, I went to the Disneyland of Hospitals, the famed Mayo Clinic - but despite their interdisciplinary approach, I hadn't yet seen the endocrinologist, and they focused on my anxiety - anxiety I stated again and again was brought on by the massive weight loss, intolerance of heat and extreme fatigue yet the primary care doc never did a full thyroid panel - setting me back months and months, because I trusted them - I figured I am at the Mayo Bleeping Clinic - if they don't think I have a thyroid problem then who I am to fight this...

So back to the 30 day plunge into the 30 day abyss - I am fighting as hard as I can -letting someone else take control - you lead i will follow - like I said before, poke me prod me ozone me UV light me hydro me - just let me turn the corner - and with all the support I have been getting from my writing - it has lifted me up and I THANK YOU - this has been an eye opening experience - and I have received support and love where I didn't ever see it coming from -  I also knew when I started telling people that I was writing that I needed to have thick non judgmental skin, and I feel that I have succeeded.  There are areas where I blindly thought support would exist and it has gone silent - but that's okay - its not my need or place to require support anymore.  There have been many people the past few years that have seen me and thought I lived a life so different than what I was living,  this is where growing up with a heightened awareness of others, anxiety and learning to live with an uncommon illness have shaped me, and has taught me, tread lightly respect others where they are at, not where you wish they would be.  And never forget you can always be surprised when you least expect it.  I have everything I need from those that I hold so dearly and many more that I hadn't even known existed - I am humbled and blessed - and maybe this was the missing link that will give me the strength to push me to the other side.

                                                    "Somewhere Over the Rainbow"

Dreams Come True

Friday, March 16, 2012

Double Trouble

It happens, just as I feel I really cannot mentally gear up for another day with this illness,  just when I want to scream give me a few days of normal - please - just when all that is crashing down - I get hope.  This week - despite having my period - which really knocks us CFS'ers down - I was strong enough for two blood treatments, one on Tuesday and one Today.  It took me completely by surprise - and my normally very prepared self - plenty of fluids, a dense protein meal - mentally gearing up - I did none of that - and I was able to handle them.  Tuesday was a breeze - twenty minutes - bing bang boom - Today, oddly I was not hungry for lunch - so I went to the doctor with a sandwich in hand - but hadn't eaten since breakfast - and for the first time in a long time when she said - you can handle it - I didn't self doubt.  So despite not having any of my normal precautions in hand, and despite by blood being thick and black (most likely due to bacterial and viral die off) so what took 20 minutes Tuesday took over an hour today - but I wasn't light headed - I didn't need to drink sugary beverages, and I felt a sense of calm I haven't in a long time.  Progress.  There was no doubt I am stronger.

Part of it was I don't care anymore, poke me - prod me - ozone me - IV me - hydro me - color puncture me - I don't give a damn what you do to me - just make me better.  This optimism may fade, and that's why I intend to have it in writing - but today - one hour ago - I didn't have to force hope - i believed - I will get better.  I will get better. I will get better - and maybe in part because I have just had enough.

Tuesday, March 13, 2012

Uncommonly Kind

I've had a really bad sore throat all weekend, and today when I went into the doctor my lymph nodes in my neck are really swollen - perhaps they have moved down from sub-mandibular (under the jaw) area and down my neck - fine with me they can keep on walking right on out of here!

My family has been in town, my sister, her two children and my parents.  Plus this weekend my Uncle who lives in California came for a quick visit.  For some odd reason having all my family here has made me homesick - which seems strange.  I guess all these reminders of home make me miss my actual home.  Not that I should complain, since where we are staying is so gorgeous - but its not home. And as much as I like to pretend that I am a very young snowbird, that's not the case.  Addison has decorated my walls with a few of the pictures she found that I had in my drawer next to the bed, so now on the wall and glass door hold random 4x6 snapshots.  I also had my mom bring me my sheets and duvet cover from home on her last visit - which each night I am grateful for.

Also - having everyone here, has made me acutely aware of how little I can do - when its just me and Marc here, we get into our monotonous routine - breakfast - lunch - drive to Dr. - drive home - rest - maybe swim or short walk - dinner - tv - bed - wake up and do it all over again.  But the hustle and bustle of a 3 1/2 year old and a 1 1/2 year old on a vacation has stirred the pot.  And as much as I love it, its frustrating to half participate.  There are many brights sides, one being the good night routine with Addi - we watch a bit of a movie, then stories - and her unknowingly kindness she freely gives can break one's heart.  For example, yesterday when I got back from the doctor she was having a party in my room - and when I said my throat was really bothering me - she came over and kissed my neck - and then went about stirring up her colander of soup for the party - complete with ripped kleenex and my iPod headsets as the ingredients - if kisses from a three year old could wipe out this illness - I would be currently cured.

Kindness.  That little kiss - or out of the blue - I love you - or hug from a not too steady 1 1/2 year old make me yearn to be better before they realize one of these aunts is not like the other...that most adults don't spend the majority of day in bed...but for now they don't notice a thing - but I do.

Last week, I opened up my Facebook page and there was the following message - are awesome! you are so sweet and always recognize and notice everybody! yep, you are officially going to heaven!"

I can't tell you how it made my day, and also made me a bit confused, because Sophia, who left the message and I though we went to high school together, same homeroom, she is not someone that I have  regular contact with - and when I commented that I don't know what I did, but I will take it - she replied
"It shouldn't be unexpected...I think I speak for everybody! Yep, I'm the spokesperson" - 

Kindness - it goes a long way - and the days like today - when I can't seem to concentrate well - the words i want to say aren't coming freely - my neck has hives - my eye lids are rashy - and I would really rather have gone to Nordstrom with the gang than be in bed and I begin to wonder besides being extremely high maintenance what the "f" am i doing that really matters anymore...then I force myself to be grateful, to focus on that unexplained message - that doing "something" isn't something monumental - this illness has forced me to re-evaluate my definition of being accomplished - and that simple Facebook message meant more than the author could have known - because it reminded me again of the power of kindness - and if i can accomplish that - that is enough.  It took an unsolicited message to wake me up again - so thank you.

A friend of mine has started a website and Facebook page dedicated to just that - random acts of kindness - I encourage you to join it - Uncommonly Kind - there are wonderful stories - and this is one I will add - 

Thursday, March 8, 2012


I often mention "hydrotherapy" - so here are the instructions for Constitutional Hydrotherapy -
Constitutional Hydrotherapy

Wednesday, March 7, 2012

The D's

Doubt, Despair, Dependent - that's how i have felt the past 48 hours - I normally have a few bad hours, and then a little break, like the light shining through a bunch of storm clouds.  But the last 48 hours the word fatigue doesn't even describe it - I don't know what dying feels like, and perhaps there are many experiences of that inevitable fate, but as I was laying in bed - I kept thinking, I feel as if I am slowly dying - For the firs time since I got here I didn't think I would be able to get to my appointments - but the knowledge that I may feel better afterwards willed me into the car.  When I got to my appointment my doctor realized that I had a fever - and that was HUGE! I never get a fever, never ever ever - I don't sweat either - both signals of a dysfunctional immune system.  This means progress - I'll take progress -

Last night while I was getting my hydrotherapy treatment a song came on the radio - and I'm not even sure if it was Dolly Parton - but her wide smile came into my head - and I thought to myself - a world where Dolly Parton exists is a world filled with hope - if Dolly can pull herself out of a shack in the Blue Ridge Mountains - then there has to be a way that I can find a way out of this - despite this illness not obeying the rules - because often the harder you try the worse you get - but there has to be a way back to my old self - so I have another D to end the day - a bright face of hope - thanks Dolly!

And today - the fog has lifted - my back pain has lessened the fever is gone and the best news yet is in about 1 hour my family will be here - lucky.

Saturday, March 3, 2012

Hello Chin...its been awhile

Last May I had the dreaded experience of heading to the DMV for renewing my driver's license.  You remember the old days when you had to renew it every three years or so - much more of a hassle but at least you didn't have to relinquish your 8 year younger self as I was about to do - and I wasn't to happy about it!  I also remember the kinder years of the DMV before they were strapped with budget cuts and a minimal staff, the jovial camera man who would actually re-take your picture if you didn't like it - those days are long over - in fact while I was there I got a notice that soon they would be taking your picture, but sending all the info to California and then you would get your license in the mail - no more waiting in vain on the plastic chairs with everyone else's anticipation of the most likely awful photo.  Everyone, including myself, tries to play it cool; so you saunter up when you name is called pretending that you don't care how it turned out.  Some of the most laissez faire - resist the immediate temptation to steal an obvious glance while in front of the gallery, patiently waiting until they are alone in their car.

I took my sister for her driver's test - I'm five years older - and I still can't decide if my parents thought she would be calmer with me or they didn't want to be there if she didn't pass! Nonetheless, I swear her smile was bigger and more proud when she picked up that picture than it was when she passed the test.   While she was out on the road test, I had renewed my license and while it wasn't the worst pic, it certainly wasn't great.  What was so entertaining about her photo was her pride in its faboulousness!  When we got home, my mom and I kept stealing glances as she held out the picture like a trophy - but in fact it was - a good DMV picture should come with at least a medal.

So last May, I was relieved that they no longer make you hand over your old ID, because I still use it ( I don't think the cashier at Nordstrom is looking at the expiration date) - not only because I am eight years younger in it, and its a much better picture - but I have a jaw line and a chin!  I've never had a prominent chin, so taking that less than stellar jaw line and adding a bunch of swollen congested anterior lymph chains, and there goes the chin.  So when I went and picked up that ID, that's all I saw,  this double chin puffiness quality to my neck - and every time I pick it out of my wallet it irritates me -

Last October when I returned from Phoenix, a number of people commented that I looked a bit different - and I did - much of the swelling had decreased.  But this trip it has gotten worse as my body works harder to eliminate these infections.  This week all my treatments were aimed at improving the lymph flow, and it seems to have worked.  Last night after about 6pm I was really in rough shape.  I was so fatigued I had trouble swallowing despite being so hungry.  When I get that tired, its like all autonomic functions are no longer automatic - so three times during dinner last night I was forced to spit out my food when the act of swallowing wasn't coming naturally.  After I finished, I climbed into bed and it felt like a super powered magnet - pulling all of my limbs downward, making it difficult to move in any direction.  After about an hour of silence and being perfectly still, a little bit of life began to return.  My boyfriend came in the room to see if I wanted to watch Blue Bloods, I felt good enough to sit up in bed and watch an hour of TV, happy in the normalcy it gave.  After the show, I forced myself up to get ready for bed, and as I caught a glance of myself in the mirror I did a double take - no way - I could clearly see my left jaw line.  I can not explain what a sense of joy that brought, not only because the left side of my face looked like I just got a little nip and tuck - but because it meant progress -

I don't know how long my newly slender left side will hang around - I am guessing it may cycle in and out of swollen and not - but for the first time in many moons - my chin was back!  And let me tell you, if this holds, the first thing I am doing when I get home is heading to the DMV!

Thursday, March 1, 2012

First Impressions

I've been craving apples lately - when I was little I have fond memories of being on a blanket in the side yard of my cousins house, playing with Barbies and picking the green apples from their tree - with the white plastic salt shaker never far from reach.  I miss apples.  But more than missing apples I miss the ease of going out to dinner and not worrying about what ends up on my plate.  It seems just as I have gotten this fatigue improving, these food allergies have come crashing down, and once again limited my freedoms - somedays it's like wearing a house arrest monitor without the sore ankle.  And just as my pity party was gaining steam, bring out the party hats and noise blowers - a memory flashed to the forefront of my brain and it snapped me out of it.  The truth is I can still go out to eat, I just often need to eat before.  I can still move freely, though often stiffly - and there is hope i will continue to improve...

The memory that flashed was my junior year of high school.  I was doing the rounds figuring out what colleges to apply to, so my parents and I were attending a Boston College informational meeting at Turner Hall in downtown Milwaukee.  It was a cocktailesque meet and greet with Boston College alums.  While there,  we ran into a partner from my uncle's law firm,  (and I don't know why I remember) but I am pretty sure he had a red sweater on - a subtle shout out to his UW-Wisconsin alma mater where he still held a track record.  He was attending with his younger brother (I believe Oliver) and I recall being a bit jealous because it seemed awfully cool to have a hip older brother showing you the ropes rather than your parents!  More likely it made an impression because that's just how Jeff Kaufman was - he was a person that without much fuss could make a lasting impression.  The type of person that recognizes the importance of eye contact and can make you nervous because you realize someone is actually listening to what you are saying.  That was over 20 years ago and though the specific details of memory may be blurred this first impression was forever embedded with a lasting imprint on my mind - nothing special about the event, or even the memory, but something was special about the person - little did my adolescent brain know how monumental special he was.

Shortly after that initial meeting,  Jeff was diagnosed with ALS - Lou Gehrig's Disease.  I faintly remember the whispers of something being terribly wrong with my Uncle's partner and dear friend - the initial doctor appointments ruling out various reasons why Jeff had difficulty walking up the court house steps - the unexplained falling - slowly these whispers gained volume as the diagnosis was cemented and the daunting new realty the Kaufman Family would soon have to face - the defining line of before and after.

I only saw Jeff, his wife Jan and their family a few times over the next 20 years, all at fundraising events for ALS.  I remember the first one we attended while Jeff was still only showing minor effects of this terminal illness.   A fundraiser at Miller Park before a Brewer's Game.  There were tents and food, a jovial atmosphere yet I can still feel the intimidation I carried, staying close to my cousins, not wanting to lock eyes with any of those attending that were prisoners of ALS.  Those individuals trapped in bodies that had been ravaged by this illness, knowing their mind was perfectly intact - it scared me - I didn't know how to act.  It terrified me that this illness existed in real life - no longer something I may read about - the torment of this illness was right in front of me, and I couldn't reconcile seeing Jeff from a far and knowing this was his most certain fate.  How, how does one go on?

The last time I saw Jeff was a number of years ago at the yearly ALS Evening of Hope Gala - I'm sure I said hello, thinking back I should have told him what an impression he had made on a 15 year old girl many years ago - that dashing dark haired red sweater wearing uncle - but I probably just said hello, and made small talk about what a great event it was; my lips moving while my brain was having a separate conversation chastising myself of how lame this conversation was - but that was the cruel reality of ALS - unless you know someone well - a quick two way conversation is not possible.  So, the benign one way pleasantries of a not so pleasant reality was what sufficed.  And I walked away feeling empty - knowing I had done my best, but well aware of the reality of a forced normalcy that Jeff had to endure, being helpless to verbally respond.

Jeff, his wife Jan, his family and close friends are heroes of optimism - heroes of support and perseverance - and I have been so blessed to be sprinkled throughout my lifetime with these amazing examples of strength and love- I always meant to write a note to Jeff and Jan - but never quite knew what to say - just as I have heard others mention to me - and how sorry I am I didn't - its not in what you say - its in taking the time and effort to say it.

Jeff waged a historic battle against ALS - he had that "je ne sais quoi" presence about him before and after - and that is what I saw and felt all those years ago at Turner Hall - when you are in the presence of someone exceptional - it doesn't matter if they are doing something exceptional at the moment - its that sixth sense of what they are capable of - Jeff was monumentally capable in spite of ALS.

As I went to sleep, my pity party quickly disolved with me thinking - who the hell cares if I can't eat apples - I can go to bed with the hope and reality that tomorrow can be better.  Something currently only a dream for those diagnosed with Lou Gehrig's Disease.

Life for anyone is a balancing act between recognizing your blessings and honoring your misfortunes.   Between giving respect to your personal experience without loosing sight of those with far greater burdens - the following copies of Jeff's article from Newsweek and links to his Obituary are re-printed with blessing from Jan Kaufman - Thank you.  May your family continue to know what an amazing example of love, hope and integrity you have shown to so many - and may your endless efforts for a cure be realized in our lifetime.

The following are two links, one from the Milwaukee Journal Sentinel and one from Jeff's law firm, I wanted to include the links rather than copy, because they include photographs -
Jeff Kaufman Tribute
Milwaukee Journal Sentinel

And here is Jeff's Newsweek Article, which I would be remiss not to acknowledge that Jeff did not have the luxury of typing this - it was painstakingly completed with his special computer while using his eye movements - Exceptional.

From Newsweek Magazine - September 10, 1995
Digging Your Own Tunnel - Jeffrey Kaufman
Every now and then during your lifetime you read or see or hear something that so exemplifies your existence. or a part of it, that it's almost painful I recently had such an experience while watching "The Shawshank Redemption," a movie about the effects of life-term imprisonment on hope and the human spirit. It's also a good metaphor for my life with Lou Gehrig's disease (or ALS).
I have heard it said that ALS is like being a prisoner trapped in your own body. I have always thought that this is an oversimplification. By providing an in-depth look into the experiences and psyches of various prisoners, this movie took the metaphor to its proper depth for me.
The story begins with the main protagonist, Andy, being sentenced to two life terms for double murder. On his first night in prison, he is faced with the enormity of his situation. This scene evoked my memories of receiving the sentence without hope: a life with ever-increasing disability and death within three years. I remember lying alone in that hospital room with little hope or sense of future. The enormity of my nightmare hit me as I thought about my wife and kids, money, my job, and my kids some more. I never thought about myself, not because I'm unselfish, but because I'd written myself off. I prayed out loud for the first time since I was small, asking for a reprieve so that I might see and help my young kids grow up.
Like Andy, my first two years were the roughest. He was regularly beaten and forced to compromise. In my case, I was constantly fighting--with myself and sometimes with others, as the disease continued its relentless violation of my once dependable body. As I watched the film, I remembered the stitches, head bangings, cuts, bruises. torn muscles and strained ligaments that resulted from my efforts to maintain normalcy. I recalled the frustration that came with each grudging compromise: walks and the exercise bike instead of runs and swimming; leg braces: no driving; working at home: wheelchair. I remembered the depression that came when I was forced to ask for help with my progressive loss of freedom.
The movie illustrates how Andy's reaction to the loss of freedom is different from most of the lifers'. Most of the lifers simply surrender after a while. Andy finds ways to assert his status as a thinking, functioning human being despite the limits of prison life. He establishes his worth to others as an advocate, financial manager and librarian. He has long-term projects, a chess set and a tunnel that takes him 19 years to dig. He never gives in. He finds ways to grab moments of normalcy, like playing music and drinking a beer. Andy's ability to affect the lives of fellow inmates is most important to him--he can cause things to happen and make people react. Andy talks about hope making a man free. His philosophy is, "You can get busy living or get busy dying."
I thought about my reaction to imprisonment and recognized that I have both an Andy and the other type within me constantly doing battle. The daily opportunities to surrender to the isolation of physical limitation. The temptations to give up something else. And how each day brings chances to participate in life, to fight against the forces that imprison me, to dig my own tunnel. It's easier to withdraw to my cell. As time advances and the disease progresses, everything gets harder, not only for me but for everyone around me. It is more difficult to affect the lives of others in a positive way. The walls close in. I become more of a spectator in order to ease up on the people around me-and on myself. I wonder if I could return to normalcy if my tunnel's ever finished; if I'm strong enough to sustain the effort involved in coming back; if I'm too comfortable with my isolation.
I became more convinced that death would be easier, but I've found reasons to live. I know that without my children and without the hope medical research offers, it would be very easy to give in. Andy makes his own hope. I have mine given to me.
I rely on images from my life on the outside for the motivation to "get busy living." I can see and feel myself doing things like holding my children, playing with them, eating certain foods. The movie echoes these reflections. I thought of how much I resent the necessity of asking when I need a shower. food, the bathroom, to scratch an itch or change channels. I've learned to ignore many of these things to avoid asking for help.

The movie's visual images were especially evocative. There's a scene where inmates, working on a roof, rest in the warm sun, drinking beer. I recall the great feeling that came from finishing work and resting with a beer on a hot day. There is a shot of Andy, recently free, in the rain, reveling in the interaction with God's natural forces. I took a lot of pleasure from running, playing ball, standing in a rainstorm. Quite a contrast to now, when I can't brush away a drop of water from my eye or hold my head up.
Another image from the movie is of a freed man walking along a country road, farm fields on either side, the sun casting a golden haze over everything. Having spent much of my youth in rural areas, I felt as if I was seeing country roads that I'd enjoyed as a free man. My youth came flooding back. Making hay, working road construction, riding horses and motorcycles, swimming, just sitting. I thought how desperately I want to have the pleasure of walking again.
What really struck me was Andy's dream that motivated his tunnel-digging. He envisions life in a small fishing town in Mexico. Warm sun and water, cool breezes, cottages and cafes lining the beach, seafood, snorkeling, deep-sea fishing. I knew the place exactly. I had been there on my most memorable vacation, nine months before I was diagnosed. I was experiencing symptoms, but nothing that stopped me from doing anything I wanted to. It was the last time I would feel that freedom. In the six years that have passed since that vacation, its memory continues to provide a picture of the pleasures life offers to free men.
Images may fade. As does the motivation. However, life can replenish these things. Sometimes it takes something like this movie to remind me to get busy living. Hope can live for as long as we're willing to dig. Even for 19 years.

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