Tuesday, February 28, 2012


I had never struggled with Happiness prior to this illness.  Its not to say I was previously living in the state of a perpetual musical number with birds chirping and butterflies dancing - I had a bell shaped curve range of emotions like anyone else - two standard deviations in either direction you could find plenty that would not fall under the "happy" category - but in general I didn't know what it felt like to struggle back to the middle.  The first two years of this illness were so wrapped up in confusion and fighting to hang on I didn't have time for much emotion either way.  But as time has passed I have discovered what it feels like to fight for your happiness.

Today started off pretty shaky - but after my doctor appointment something lifted, and a bit of that old set point quietly slipped in - and like the first time you get glasses and you can't believe how clear everything looks - that's what it feels like when inexplicably the effort to just be is lifted.  Your surroundings become crisper and more defined, your feet feel a bit firmer planted to the ground and you no longer have the weight of getting by strapped to your back.  And when all that lifts, I take it in.  I never take it for granted, I don't know if it will hang around for an hour or two or even if I am lucky an entire day - but Sophie and I headed out for a brief walk - and wouldn't you know the birds were chirping -

Sunday, February 26, 2012

HOLY MOLY i have cfs!

So that statement might sound a bit odd - considering i write a blog titled Chronic Fatigue Chronic Hope - but that is the caveat about this illness - it takes a long time for it to sink in - that this isn't something you kind of have - and i think that's how i have always looked at it - I kind of have this thing - its not well defined..it will be resolved sooooon... etc etc...and despite being in the medical field i decided to take a back seat and be a patient for awhile - giving in to trust.  In the beginning i was so tired of fighting doctors and their old ways of defining this illness - when i found the one that finally got it - i just let go for awhile.  An example, last September when i went for my annual OBGYN appointment my former doctor - when she asked me about exercise and i was really excited since i was up to about 25 minutes of walking - she told me at my age i really need to hit 45 minutes to get a maximum heart rate - i repeated - you do know i have chronic fatigue?  And she still went into the benefits of aerobic exercise.

I really don't expect every doctor to know everything - but i do expect people to admit when they are not a specialist in a field - or be curious to learn more.  In my irritation i would like to send her all the great research from Sue Jackson's posts - but i am trying to live more zen!  When reading these articles i realized i intuitively did many of the suggestions - for example using a chair.  Often when i get up and am trying to make breakfast or other meals i need to grab a stool to sit on - I also have trouble emptying the dishwasher - but it is a lot of bending and standing - constantly changing your blood pressure.  I have extremely low blood pressure - normally around 90-100/60-70 - and most people when taking it comment how great that is - what they fail to put together i also may have a resting heart rate while seated anywhere from 85 -90 beats per minute - the two don't go together.  So it takes that much heart pressure for me to maintain a minimal blood pressure.

I have always known this, but once again, this illness often forces you to believe the unbelievable - so my Mr, Big swim from the day before was a bit overzealous - its just so hard to not push when you feel good - my brain telling me you can't be sick - look you are swimming today - then the crash sets in the next day.  I think I will get myself a heart monitor - just for information sake - and to help chart progress - the other articles do a great job of explaining how difficult it is for our bodies to work in an aenorobic state - which for me (except in very young age and 22 - 32) has always been difficult to gain muscle mass -

my thought processes are really off today - but i wanted to get theses articles out -
heart rate these are Sue Jackson's excellent posts regarding orthostatic intolerance - it is helpful for people to understand because so much of this illness is counter-intuitive - and often people will encourage me i should do more or exercise more because that is what normally helps in fatigue situations d/t depression, anxiety, or acute type illnesses -

However, after reading these and consulting with my physician I don't intend to go one beta blockers for numerous reasons - but it also explains why my blood treatments work so well for me because they not only help with the infections but oxygenate my blood - i often feel as if i am starving for air or nutrients - despite breathing fine and just eating - but its this cellular dysfunction that i am very grateful so much research is going into....

alright - that's it for now - hope everyone enjoys the oscars tonight - as always i am looking forward to the jewelry.

Friday, February 24, 2012

kindling to fire

Or is it a match to kindling?  i have always done that - and i won't blame it on "cognitive dysfunction" related to chronic fatigue - that's what that avocado was like yesterday - a little spark that sets off a chain reaction overblown in its intensity.  You throw that avocado on damp wood and you get the minor lip tingle, and in an hour or so everything settles back in to normal - add it to an inflamed system fighting off other infections and it rages out of control.  It was hard to eat any food last night without getting symptoms and then i got a rash below my left eye and temple and this morning both my eyelids were a bit swollen - you are finally hearing in the mainstream media how the health of your intestines is vital to your overall health.  The majority of your immunity lies there, and we now know that getting "butterflies in your stomach" is a true physiological response - one of my favorite books is Molecules of Emotion, Candice Pert - she is brilliant and really "proved" the mind/body connection - but not in a cause/effect way - more that literally every cell in your body has complete memory - i read it too long ago to give you the best review - check it out though -

I read this link Wall Street Journal on Sue Jackson's blog - and beggars can't be choosers (thought i would throw another one in!) but i do hope that the researchers will look at this illness in a more functionally holistic way - meaning - all these "un-related" symptoms are not unrelated - my physician has really been looking at the role of the pituitary gland in my case for two reasons - one its role in immune function and two - that i fell out of a moving car when i was one years old -which has been a punch line in many of the mixed metaphors of my life! Anyways, her theory is that individuals with minor pituitary dysfunction sets of a cascade of problems - so as i patiently listened when i got home i googled away- and sure enough found these two articles pituitary/immune and this Misdiagnosing and found it fascinating.  The second article specifically speaks to mis-diagnosis of thyroid dysfunction in patients that had even minor head trauma d/t TSH not working optimally- something a number of doctors told me that it was not possible to have hyperthyroid condition without TSH being out of range first.  Well - I did. The point being - I continue to be disillusioned trying to find a magic bullet answer to this complex illness - but am grateful for those pursuing any answers.

I was discussing this point with my physician today, and I said I think there is a void in Western Medicine - think back to Hypocrates, many of the great physicians were artists, philosophers, they were healers...but now the competition to get into medical school is so fierce, it relies so heavily on MCAT scores, those that do well on a standardized test format and have insane GPA's in the sciences - you are getting this very narrow type of person - I know a number of very smart, caring - well rounded individuals that couldn't get into medical school - yet they would have been excellent physicians.  Then you have the movement into the specialities - like i said - if you need a heart transplant there is no better place to be than in America - but primary care got so boring with the current medical model - most people walk in diagnosing themselves - because somewhere along the line - prevention - building up immunity etc..got lost - so here we are - this society filled with auto and chronic immune illnesses that rely on pharmaceuticals to stop the symptoms - but where is the restoration of the entire body?  The pharmaceutical industry has done a brilliant job at stopping cascading event in our system - but restoring and re-building that's another ball game.

Yesterday, on the AOL newsfeed was the following headline - "what condition do 75% of Asthma Sufferers also have" the answer....GERD the article then went on to say that these conditions were two different diseases, require two different treatments and are unrelated - has everyone lost their mind?  Look to chinese medicine, naturopathic medicine, other integrative teachings - and you will realize that they while yes they are different conditions - they are physiologically related - there is often a reason behind the two co-existing.  I learned early on, with asthma patients make sure they have enough digestive enzymes and HCl because if they aren't digesting food properly, it will effect their lungs.  It is one body - one action has a reaction - and its connected by pathways and transmitters - it is impossible to constantly separate out organs and have a curative effect - you can have a symptom management effect though...

Well - there's my little rant for today....i encourage you to look at yourself in a more holistic way - hopefully the pendulum will begin to swing back again as we see our nation suffering from chronic illness after chronic illness -

(this is out of order - but i can't figure out how to move the entry's around...) (fyi)

A little sex...

In the City that is! okay - while i was getting my blood treatment today and gabbing away to distract myself - both my doctor and my fellow neighboring patient commented on how funny i am...i'm no stand up - that would be my cousin Jack - but I do have a pretty good sense of humor - they were saying i should be writing about my take on camping - and i told them i have a hard time conveying humor in my writing - so i will try to work on that.

i have a post that i began this morning as my eyes were both swollen, and rash on my face - lingering effects of avocado gate - and my body was once again craving my blood treatment - in my gut i just new it was what would bring me some relief - and sure enough it didn't disappoint.

so when i got back here, i was ready to go the pool - by the time i walked over i was out of breathe - it only took a few minutes to recover - and since its quite warm her in phoenix today i didn't waste much time getting into the water.  after about my sixth lap someone else got in and was swimming next to me - and i couldn't help but think...hmm he looks a lot like Chris Noth - and after the second time of us being at the same end of the pool - i blurted - "do you just look a lot like Chris Noth or are you Chris Noth" and he politely responded - "I am Chris Noth" - then i said "You do really good work" - "He said thanks" and we went on swimming.  After, as he was on a lounge chair reading a script i was worried that if it shows up where he is that he might think I tweeted it - i should of assured him - no i might just mention you on my blog...

I won't lie - it gave me a little extra kick!  It was that out of the ordinary moment that added to an already much better day than yesterday - i've heard stories of individuals that have lived with alcoholics and one of the worst parts about it is the unpredictability of that person - walking on egg shells never knowing who you may get - just like those awful experiments they do with mice - where if they are shocked at a predictable interval they can handle it, but if its random it drives them crazy - (thinking way back to psych 101) but the point being there is an element of that to this illness - yesterday this tiny bit of avocado through my system into chaos - and today i'm swimming with Mr. Big!  (this one's for you nerd) - I'll take today.

Thursday, February 23, 2012

freedom's in your heart - 2/21

I probably shouldn't have drove home yesterday from my appointment - but i felt really good prior to it.  I was driving singing out loud - windows open - lucky to be in the sunshine- but everything started to fade - like the air slowly being let out of a balloon.  I had all my snacks with me - sometimes i look like a mother of a toddler - everything you may need - but i'm the 3 year old.  I felt okay leaving, but then stopped at the grocery store and i knew things were getting bad when i couldn't multi-task.  My mom called to check in on me and i couldn't talk - i became robotic in thinking...like that little girl that was on sesame street...a cup of sugar, gallon of milk, stick of butter...over and over.

By the time I got home, all I could do is get in bed.  My friend was coming over later to help with dinner but by 5pm i had to get out of bed and worked slowly to prepare something to eat.  By the time my friend got here - the act of making dinner and eating just tipped the scale and it was like i was no longer singing rolling the deep - i was spinning down deep.

so today there was no option but to take a car to my appointment.  i was lucky to sleep hard and when i woke it was tough to move.  once again, the robotic thinking began.  Juice - Bed.  Okay, could barely feel my feet below me - and i didn't want to have the phone away from me, worried i would fall and be like the lady in the commercials!  "i've fallen and i can't get up!" Next step - eat.  Okay, you can make it - that's done - back to bed.  Oh, and all the digestion issues i have decided not to share - google it - then when i made it back to get ready i just looked hard at myself in the mirror - focus - focus - you can do this - again.  Wash face. Done. Moisturize. Done.  Brush teeth. Done.  Breathe. Breathe.  Okay - look presentable - fake it - fake it.  Not bad.  Back to lay down.

Now its time for lunch - i know i'm getting a blood draw today - need to eat.  slowly slowly.  Alright, feeling a bit human.  Car is here.  I get in, and the thing is - I really like people.  Its not a small talk thing, i have always enjoyed meeting and learning about other people. So when I give the address to the driver - John - i make a joke not to worry that I'm not contagious.  John asked me questions, and then talked to me about his childhood, it was one surrounded by opportunities to make poor choices.  He talked about a man he knew that served 10 years in maximum security prison and after being released he told John that he was more free in prison than he had been before - and was trying to teach John the lessons he had never learned.  John said he was only about six and couldn't understand in his early youth what he meant - but has he became a teen and saw the world around him - he knew exactly what he meant.  The words that man told him became his mantra - that "freedom is in your heart."

As i sat in the plush leather seats, looking out the window -i thought about how this illness takes many of your freedoms - but there are elements all around us that can never steal the freedom of our hearts -

After my appointment, we rode quietly back, i sunk into the back seat - sunglasses on - pretending this black sedan was driving me for a different reason - day dreaming - i made it.  As my eyes were closed behind my glasses - and i was drifting - John interrupted the thoughts in my head - and out of no where - said that I was very brave.  And it meant so much to me, because this illness makes you feel anything but brave and I felt grateful once more for the kindness of strangers.

When,  I got inside the house, and talked to my friend on the phone and she was telling me about her what a great day she was having because someone called and complemented her on her work - and how good it made her feel. Then she hung up the phone and a co-worker made a dumb blonde joke, and how in an instant it changed her mood.  And I thought again about my "driving miss daisy" experience today, and how the kind words did much to lift my spirits.  Its always a reminder how powerful our words are to others and the effect they have on others...thanks john.

A to Z...

You ever feel like throwing something - i'm in the mood to smash a bunch of plates - but considering they're not my plates i better reconsider.  I thought of this because i heard a funny story yesterday about someone's boss being so angry she threw a frame across the room - and it cracked me up - such a visceral childish act - but it gets the point across...so instead of throwing plates i am going to throw some words - A to Z style...last night i was laying in bed with my window to the world these two "stars" were so bright and one exactly on top of the other...they were mesmerizing - turns out they were venus and mercury.  It gave me such a sense of calm and today when i woke up i felt better than i had in weeks.  Then it all came crashing down because I got a breakfast sandwich and it had a bit of avocado on it - and despite picking it off, the english muffin must have shared the cutting board because within minutes of eating it, my lip started to swell a bit and my throat was all itchy - and i wanted to throw some plates - because i finally wasn't' exhausted - but soon was face down in bed from the 2 Benadryls i took -

so here we go...if there was a noise affect imagine porcelain crashing

A - Avocado, Allergies -
B - Bananas
C - Carrots
D - Damn it Damn it
E - Exhausted
F - well, you can guess
G - Give me a "F"ing break
H - Humor needed
I -  Irate
J - Jack ass
K - Kicking and screaming
L - Laughing
M- Mercury
N - Never  - give up
O - Optimism
P- Pessimism
Q - Quiet
R- Rest
S - Swimming
T- Too much
V- Venus
W - When
X - X-
Y - Y -
Z - Z -

Nothing like screaming X, Y, and Z
But i will focus on N -
And Mercury and Venus...its a big big universe....you have to look hard to see - in the darkness you find light

Sunday, February 19, 2012

will i remember

I have a chronic condition, it could be worse - i could have a chronic progressive, for instance rheumatoid arthritis or chronic terminal - ALS or Parkinson's - but none the less - its chronic - and there are many days i wonder - will i remember what it feels like to be well?  Or has this new reality integrated itself into my cells to the extent that i won't have the ability to remember what i was like before.   I have those moments of relief, the brief one's where i feel exactly like i did before all of this - despite their fleeting nature they are tiny reminders of my hope that once i get better i will remember.  The longer this goes on, and you are continually forced to alter your lifestyle to manage this illness - which habits will take a firm hold and continue the path of dis-ease?  I continue to focus on the goal of stringing enough good days together, that a new rhythm will be born.  But what about all the habits that have been formed to make the best of each day...will i easily let them go?

I have had a few people mention to me that they didn't' realize how bad it had gotten or said they weren't sure how to approach me regarding this illness, and i take responsibility for that - i had been so afraid if i "acted" the way i felt - that it would be a reality that never left.  So i would do my best to get it together for brief moments of time - i had learned long ago dealing with panic disorder how to act completely differently than the inner turmoil i felt inside.  I also was struggling with doctor after f'ing doctor that kept telling me this was all in my head.  So for two years, I was fighting to stay above 100 lbs, fighting through a fog of crappy anti-depessants that i didd't need - and wondering if i wasn't just crazy.  That is not my story alone it is shared by so many of us suffering from this illness.  Therefore, it was difficult to know what to say or how to act - i was literally just surviving.

This past few days and the next two i have been and will be in phoenix by myself - and despite living many years on my own - its been rough.  This illness has forced an already cautious person to become hyper-vigilant.  We needed to make food in advance in case i couldn't leave the house, i have my doctor's home cell number because she is a saint, and luckily my good friend's schedule has allowed her to stop in last night and this afternoon.  I laugh reminiscing that i once counted all the places i had lived at from graduating high school until now - I had lived in over 20.  Sometimes alone, others with roommates, from Milwaukee - to Colorado - California to France.  I had no dishwashers, basement laundry, street parking...none of that mattered -  the point  - I loved my independence and I loved the constant change.  Forced to be dependent on other's is a reality that I had fought hard against in the beginning.  Its also difficult because as much as i would like to pretend CFS/ME hasn't taken a part of who i am at the core - it has eroded many of the characteristics i had defined myself by. I use to be comfortable in the presence of anyone...but now

Its a double edged sword, I need help, but it takes a lot of emotional energy if it isn't the "right" person - i don't mean the most loving, or nurturing - it takes someone you feel extremely comfortable with that has accepted this new version of yourself and doesn't expect to find the old one.

You remember when you first went off to college, became a new mother or father - or took a grown up job and with these changes met an entire new set of friends - and then you thought -  let's all get together - your "childhood - known you forever friends" and the "new" friends;  in your blinded excitement you are shocked that perhaps when these groups co-exhist they have nothing in common or don't bond - well bingo - they don't.  They know two different people.  They have different experiences with you and have formed their own "picture" of who you are based on their current information.  The beauty of your friends forever is that they are more like siblings - and they have formed a deep understanding of what makes you tick- the flip side is that its often harder for them to see that you have changed - and in my case not by choice.  This is how I feel much of the time - people see me, but no longer know exactly who i am -

I would give anything to be all the adjectives that I had been proud to define myself as before this illness -
I took pride that i was a loyal, dependable friend, easy to be around, could adapt to most any social situation, could give someone my full attention, loved to travel and go out to dinner.  I was an extremely hard worker, loved to volunteer, and could hang for hours with friends - but this illness has slowly whittled away many of the parts of me i was most proud of.  I just don't have the energy - I try not to focus on what i have given up, but it is the current reality - heck, for example i haven't been able to go and get my hair cut - i am now allergic to hair dye (which i loved) the smell at salons irritates my entire nervous system - i can't plan in advance, and i need a haircut that i doesn't require a blow dry or on some days even comb out - pony tail it is...this is the new reality.  I'm resourceful and find solutions, for instance my cousin Paul is generous enough to makes a house call - but its not the same.

I'm no longer the easiest dinner guest - since i have loads of foods you can't serve and i may cancel at the last minute- i have this insane sense of smell that if you are wearing too much cologne or have scented candles i begin to get a massive headache - if the room is too hot  i begin to get light headed - if there is too much stimulation and i am having a weak day i can't focus on all the conversations - i no longer can drink - which i never did to excess - but boy would i love to be back at Vitucci's with a Captain and Coke!  I get it - I look the same, and most days put my best smile forward and act the same - there in the language is the truth - its a lot of acting.  Everything that defined me so easily, i have to fight to save. So all of this together forms a snippet of my former self - and i have found some people have had a tough time knowing how to deal with this "new" person - hell - I don't know how to deal with her either!

So, I will tell you what helps - patience helps. understanding helps. kindness helps, a note or a text helps. Following this blog helps.  Accepting that i am a smart person and the treatments i have chosen i have chosen because i have researched it all and they are the best for me.  Reading about this illness and understanding, that maybe i didn't share all the crappy details because i just kept thinking - tomorrow - tomorrow they will go away - but many tomorrows have passed and i'm still fighting.

Its still me - but to pretend it hasn't taken a bit of who i am - that's just 'magical thinking (joan didion)' -

this makes me smile...sweet G.P.

this too...Addison

Thursday, February 16, 2012

Water Color Sunrise

my favorite holiday came and went - you got it Valentine's Day...its not as exciting as you get older - but i love the possibilities mine or another's that it holds.  It's a good news April Fool's day - you just never know what can happen - sure most come and go with nothing out of the ordinary but then there are those that you get a message or note from someone you never expected and it makes your heart swell.  The generosity of someone going an extra mile to let you know you are special to them, whether its a friend or significant other.

well, this valentines' not only did my heart swell - but apparently so did my spleen and liver - i'm not particularly concerned considering my high Epstein Barr and Cytomegalovirus titers - this is not an uncommon result.   if they don't improve in a few weeks - i'll get an ultra-sound.

but the best gift on Valentine's was for almost 12 hours all my symptoms magically disappeared.  It was a piece of heaven - and then yesterday it all came crashing down - and most of today - but by three o'clock i had enough energy to walk up to the hotel and grab a coffee and sit on the adirondack chair with sophie by my side and i just pretended i was like all the other vacationers - and for about an hour i felt like it. the joy of the everyday.  i people watched, sipped a coffee with no reactions - and even took a few touristy pictures -

i've had a bit of a mental block trying to write - but when i am drifting off to sleep or in the shower, i am constantly thinking of the idea of the perfect sentence. it doesn't come often or easily - and some of us can maybe hope for one in a great while...

when i was in france with my grandma and mom we went to the "musee de l'orangerie" in paris. we had just returned from Lourdes so my grandmother could get the healing water - and let me tell you that place is a bit scary - even my grandma couldn't wait to leave...and i don't doubt at one point it was a very healing place, but now its an over-run town that will sell you anything with the virgin mary slapped to it - but when we walked into the lower level of that museum in paris where in a circular room you are surrounded by these massive Monet's it takes your breathe away - and i said to my grandma - this is a miracle and my die hard catholic grandmother understood.

there is some beauty that transcends your senses - it takes you to a different place as you try to wrap your rational brain around it - the perfect sentence has the same transcendent feeling - the books that stand the test of time are those that string perfect sentences together again and again and again - the idea that  all these words are available to us, yet someone put them together in a way no one had thought to before is magic.  

i have always loved words - i loved in kindergarten our letter books - i still remember the glittered "A" Apple book, the feel of the number two pencil gliding across the shiny pages - and then later learning how to "diagram" sentences - noun - verb - adverb...i loved being in the elm grove library summer reading program...i knew i was sick when i no longer could read novels - the effort it took to read a book would take me days to recover - and i had to be careful to take breaks - rather than spend an afternoon immersed in the other world.

the arts always hold us hostage to beauty and when you are not well you have to remind yourself that its there around you for your taking.  and the arts are different for everyone, ellen recently had a man who after a skiing accident is paraplegic - yet he has found a way to still ski and complete an arial jump - he described movement as his form of art and expression - and the joy it brings him.  joy - when you are fighting through a chronic illness its hard some days to find the beauty around you - but you can't lose sight that it is there.  the place i am living we have been gifted with some of the most gorgeous sunsets - as i jokingly said - "people would pay big bucks to see this..." on the worst of the days the world seems black - and its hard to believe in the power of a Monet, the perfect lyrics meeting the perfect melody, a two doves that sit side by side on the iron fence outside my bedroom window every morning - or the perfect sentence - but they are there - and in our darkest hours they save us - some days you have to fight harder to find them.

i know i have been privileged to be exposed to the arts - and i don't know what it is like to live in a world where i have been deprived of that knowledge and experience - my hope is all those out there fighting to bring the freedom of the arts to those less fortunate are continued to be supported.  thanks mom and dad for giving me that gift of exposure and travel - and i will fight to the end to get back to that museum in paris and find that piece of perfection on earth.

okay - i am so expletive proud of myself for figuring out how to get these photos from my phone- to my computer - to this blog i don't care they are not in the correct spot - okay Apple - you are growing on me! fyi i know sophie looks miserable but it because poor thing when i bent down to take off her leash my Fiji water fell out of my sweatshirt and nearly hit her - so she was still recovering!!

*water color sunrise - credit to willy porter song*

also a shout out to my dear friend who we use to walk along lake michigan many moons ago - thank you.

Monday, February 13, 2012


we are all just little fish swimming up stream - gasping against the current - the current is strong, the obstacles many - like the salmon we swim with all our might - while the river will attempt to crush you - never ever give up the sea is within your reach.

the following video is difficult to watch - and quite frankly scared the hell out of me but only re-enforced that i although my treatments are unconventional - i am blessed to be getting them - i recently re-read some of julie's posts and the following George Herbert quote was in the comment section - None knows another's burden - isn't that the truth - so my wish to anyone is may they find the strength they have - the support they need - and the understanding they deserve.

please watch and send healing thoughts this man's way

on a lighter not i just accidentally hit some button that replaced my post with another i wrote, and couldn't retrieve what i originally wrote and i can't figure out how to get rid of the above background color -- that i find quite distracting - and get to the default - seriously i bet a five year old could figure this out - time for bed

Saturday, February 11, 2012

too tired to write it myself...

i fell down the rabbit hole today - and i apologize for not knowing how to link this article better, but i didn't want people to have to click over - this is from a woman's blog that i came across and i am embarrassed to say she does a much better job at medically explaining the theory of this illness than i have - and yep i went to medical school, of course the clarifying - naturopathic medical school - make this no reflection on my education, rather my escape from the "doctor" point of view -

before i copy it, the part where she discusses vaccines, that part woke up my brain to a long forgotten memory - when i was about 12 i started getting allergy shots - to help with my seasonal allergies (i didn't have any food allergies back then) i got them for years, even when i went away to college.  and i remembered sitting in the nurses office getting my shot that was sent by my allergist back in milwaukee and i had a really extreme injection site reaction and specifically remember having to wait in the office a call made back to milwaukee and finally being released to go back to my dorm room.  I was out cold the rest of the evening.

i decided at that moment to stop getting the shots.  when i returned home i had a follow up at the allergist and they decided to re-test me - an awful experience of about forty scratches on your back - and the results were peculiar - my skin tests showed ALL of my allergies were worse than when i started getting the shots that were suppose to help - and so they decided to "re-mix" the formula - and i politely declined.

that was the first time i saw an "alternative" practitioner - our family friend connected us with Jim Ehmke, and slowly after about a year's time of supportive rather than suppressive measures, my seasonal allergies had almost completely vanished - and my overall health improved greatly.  That was the beginning of my twenties, and i can't remember if it was prior to or after my tonsils were removed.  but this light bulb went off - i had the constitution for this illness long before its current manifestation - i was just younger, stronger and didn't have as many tipping point infections - but the dysfunction showed in the reverse effects of the allergy treatment........

that was my "prologue" here is that very informative article -
one more thing before i take my body that currently feels physically, mentally, and emotionally broken into a million little pieces (shout out james frey - but i'm not making this stuff up)  a cryptic dedication - thank you sp i will always have a reason to be grateful that dixon closed - and a bunch other sappy stuff that would make your eyes roll.

Immune System Abnormalities in ME/CFS

(NOTE: Many of you expressed interest in hearing more about how Immunovir has helped me this past year, so I started to write a blog post about that, but I quickly discovered that I needed to explain how ME/CFS affects the immune system before I could explain how Immunovir treats it.  It's just too much for a single post.  So, consider this Part 1, and I will write the second part later this week.)

Within the first year of getting sick, before I even had a diagnosis, I knew that some sort of immune system problem was at the heart of whatever this mystery illness was.  I saw the same pattern, over and over again, with recurring symptoms like sore throat, flu-like aches, and congestion, but it was obvious these weren't colds - the symptom pattern was exactly the same every time, signaling the start of another relapse (you learn to instinctively call them crashes pretty early - it's the perfect description).  One Infectious Disease doctor told me I was just catching a lot of viruses, but I had never in my life had two viruses that were exactly the same, and now I'd had a half dozen in a year.  The only thing that made sense was that my immune system wasn't working correctly.

When I finally got my diagnosis of ME/CFS, a full year after getting sick, I was hungry for information and devoured everything I could find about CFS - in books, on websites, and through the other people I was gradually finding online.  I discovered that my instincts had been correct and that a dysfunctional immune system is at the root of CFS.  Although the exact cause of ME/CFS is still not known, its immune system abnormalities have been documented in dozens of research studies.  Most experts agree that there is some sort of infectious agent that triggers immune system dysfunction and that the dysfunctional immune system is the engine that sustains the illness and causes a cascade of domino effects in the endocrine and nervous systems that lead to our substantial and disabling symptoms.

Most illnesses of the immune system fall into one of two categories.  There are immune system deficiencies, like AIDS, where the immune system is suppressed and doesn't respond properly to infectious agents.  On the other side, there are auto-immune diseases, like MS, lupus, rheumatoid arthritis, and others, where the immune system is over-active and not only over-reacts to infections but also attacks the body itself.  Unfortunately, ME/CFS does not fit neatly into either of these categories.  This means that established treatments for the two types of problems, such as treating auto-immune disease with steroids, don't usually work for people with ME/CFS).

One of the most fascinating things that I learned in that second year of illness was that ME/CFS has characteristics of both types of immune system disorder:  parts of our immune system are over-active and parts of it are under-active.  This is sometimes referred to as a Th1-Th2 imbalance or a Th2 dominance.  Now, AP Biology was many years ago for me, so I'm no expert, but here is my understanding.  The Th1 and Th2 referenced above refer to two different types of T-helper cells, part of the immune system.  Th2 cells generally respond to viruses and allergens, among other things, while Th1 cells respond to bacterial infections (among other things).

ME/CFS is characterized by an imbalance, where our Th2 cells dominate.  This means, in simple terms, that when someone with ME/CFS is exposed to viruses or allergens, our immune systems over-react, creating the kind of cold or flu-like immune response I described above, all signs that the immune system is responding (even in a healthy person, most viral symptoms are caused by the immune system response, not by the virus itself).  This is why just being exposed to someone else's cold can cause a severe crash, even though we don't actually "catch" the cold and why many of us have problems with allergies and food intolerances.

On the other hand, with fewer Th1 cells around, our immune systems under-react when exposed to bacterial infections.  This is why people with ME/CFS are extra-susceptible to sinus infections and bronchitis.  For instance, Jamie and I rarely catch colds, but if one of us gets even a bit congested, it almost always leads to bronchitis, requiring treatment with antibiotics.  In fact, I had to go to the doctor's office yesterday to get treated for a bladder infection!

This also explains why those of us with ME/CFS often have bad reactions to vaccines, causing lengthy relapses or even acting as the trigger that starts ME/CFS.  It's not the fault of the vaccine: it did what it is designed to do and stimulated the immune system to create antibodies.  But, with our overactive Th2 cells, we respond with a prolonged immune response (i.e. crash) that would not happen in a healthy person.  I have long believed that allergy shots were the trigger for my own ME/CFS for this reason.  I have also observed over the years, for both of my sons and me, that our worst, longest-lasting crashes are usually those triggered by exposure to a virus.

This is a VERY simplified explanation of what is happening in our immune systems.  There have been lots and lots of research studies detailing dozens of different types of dysfunction in the immune systems of those with ME/CFS, and each of these problems causes other problems, in a cascade of cause-and-effect.  People with ME/CFS generally have low Natural Killer Cell function and all sorts of problems with our cytokines (where levels of certain cytokines are high and others low).  Much of this is beyond my understanding.

The best resource I have seen in all these years is an excellent article written by Dr. Nancy Klimas, published in 2007 in Current Rheumatology Reports, that details all of the known abnormalities in ME/CFS patients' immune systems and how these lead to dysfunction in the endocrine and nervous systems.  The paper contains dozens and dozens of references to scientific research studies that document these abnormalities.  Although much of the article is beyond my understanding, it is an excellent paper to print and hand out to doctors.  I especially like to give this article to doctors who don't understand ME/CFS or don't believe it is real because it provides lots and lots of hard scientific facts on the physiological basis of ME/CFS.  I think this one article alone can change the minds of skeptical medical professionals!  You can look at an abstract of the article online ordownload a pdf file of the entire article (it's 6 pages long).

OK, so that is a very general overview of immune system abnormalities in ME/CFS (please remember that I am not an expert in this field - if you see I have made a mistake in this post or know of other information that might be helpful to others, please share it in the Comments section or send me an e-mail).  I will try to explain how Immunovir has helped me in the next post.  Now, time to make dinner...

(P.S. 1/18/12 Addendum: Since I wrote this post last week, I have done more reading on this subject and have found that some research papers explain the Th1-Th2 functions differently, stating that response to viruses is a Th1 function (for which we are underactive), not Th2.  I don't know which explanation is correct, but the bottom line is still the same: people with ME/CFS have a Th1-Th2 imbalance which means that parts of our immune system over-respond and parts of our immune system under-react.)

See my new post on Treating ME/CFS with Immunovir for information on how I am treating the Th1-Th2 imbalance.

the author sue jackson - link to her blog

Friday, February 10, 2012

We'll come home

These words struck me as I was reading tonight - we'll come home - a phrase from Kristin Hannah's new book which explores the dynamics of a family where the mother's national guard unit it called to duty. These three simple words, spoken by her best friend and fellow pilot -

Last night, as I was in and out of sleep, I kept thinking about my bed at home and how much i missed it. I had my mom bring me my sheets and duvet cover, just so it would feel a bit more homelike.  And I know my three months here (where to most observers around me I appear to be a very young snowbird) are a very small sacrifice to pay in the grand scheme of things - but I still want to go home.  More importantly, i wish these were different circumstances for my visit.  Don't get me wrong, i am well aware that the best treatments could be in some god forsaken place and i could be staying at a Motel 6 - or my parents would need to mortgage their home to pay for my out of pocket treatments - or i would need to be here alone - there is a laundry list of criteria that i am ever mindful of that would make this experience much much more difficult.

 I ache to return home better than when i left.  The last two days the rash i get on my neck returned, inflamed and angry, and i had a tinging feeling around my mouth - and most of my skin felt like it was crawling - much like you think of a drug addict waiting for their next hit - and I knew that would mean i would get my blood treatment today - its a strange thing to crave - but when I am back in milwaukee and these infections build up on the surface in my blood, i have these symptoms for many more days, where I knew today they would be subsided.

My parents took me to my appointment, and i was very lucky because today's treatment went like clockwork - when we got back to the condo all i could do is crawl to bed - despite my sprite stained pants from one exploding in the car - i didn't care - i dove into the bed and crashed.  When I arose at 7pm I came out and everyone was eating carry-out from a the local Zin restaurant - and I nearly burst into tears - because that's all i wanted to do was join in, eat a burger or chicken sandwich - the sweet potato fries - but the last two times i ate there i needed a benadryl - who knows what it was - something in the bun - the seasoning - all i knew is i wasn't playing with fire tonight - its a silly thing - i'm lucky i don't go hungry - its more the effort - i just want to forget about all these crappy symptoms sometimes, and be normal.

and then i read a statement like, we'll come home, and the weight of those words hit me - they kept echoing through my head, sure, i get nervous all the time, when i'm here, what if i don't get home - but i can recognize that as an irrational fear - my worst case scenario is i come home the same as i left - and though this terrain is rocky and often unknown, its nothing compared to those in a uniform - those that coming home is no where close to guaranteed.  and that statement - we'll come home - is more a mantra than an absolute - those of you that have said that statement to yourselves in the dark of night - or to your family with a courageous promise - thank you.  though i may not support the war you are sent to - we all support you - as i read the term - "i've got your six" in flight terms meaning we have your back, a fellow helicopter directly behind - what a gorgeous phrase - may we all strive to be someone's 6 o'clock -

- the prologue of Homefront  by Kristin Hannah -
                                                    From  A Distance -
 There are some things you learn best in calm, some in storm ~ Willa Cather.

I have often described this illness as a storm, and though i feel i have learned plenty and also was quite self aware when i lived in calm - i will repeat these words again - and again - and try to learn all i can from this storm - as i hope i find my way back home.

Wednesday, February 8, 2012

A little blurb

what a wonderful day! first, after exactly a week post treatments i feel a bit alive today - which is a huge relief! and then i had four fabulous visitors that brightened my day - nothing like watching a two and half year old sing Jolene to make you smile - this child and i will be fast friends, she loved my comfy bed and dolly parton - can we clone her?  and now my parents have just arrived at the airport - xoxo

Tuesday, February 7, 2012

Ode to the birthdays

the fog has slightly lifted, so i decided to try and write the birthday post...

I know why I was day dreaming of birthdays i was actually remembering the 10 days before my 11th birthday when i walked into the house after girl scouts and there was an eerie feeling that was covering the air - and as i walked through the kitchen i saw my grandma and grandpa kelly sitting on the two wing chairs in the living room next to the window, and my aunt on the brown velvet love seat and my mom on the turquoise and lime green striped velvet sofa that i hated, that is until i saw the same sofa in the fabulous house of the perry's - gave it street cred as they say.... i remember that moment of thinking it so strange that at 4 o'clock in the afternoon anyone would be sitting in the living room - all with wide eyes.  that's when they told me that george - my dad's dad had died that afternoon - he had a heart attack while driving - and then the world shifted its core and nothing ever would be the same...but while my mind was drifting during the hydrotherapy of that moment in time, then i moved my mind to shift gears and remember my birthday parities - george had died on May 6th and my 11th birthday was May 16th - a combined party had been planned with my friends at dixon school that had closed and with my new friends from tonawanda - to be honest i can't remember if i ended up having that party - as i was lying coccooned in the blankets of the hydro treatment bits and pieces of birthday images came to me in random flashes...

the party with the cake that looked so much like minnie mouse, that george thought it was a pillow and put his hand through it

the party i was too little to remember but i was wearing a pretty yellow dress, with my hair in a high bun, wearing white sunglasses and holding onto my big bird stuffed animal posing for a picture on our rock wall in the front yard

the party where my cake had the little plump plastic characters from the Peanuts characters

the party where my cousin marybeth dressed up as a clown and made balloon animals

the party where my mom designed t-shirts to look like retro pink lady bowling shirts

the party where my mom silk screened blue and green t-shirts with the image of a carton of eggs open with one cracked and the phrase "heather cracked a dozen" and then the two teams went and played baseball and had a picnic in the park

my "sweet sixteen" where melanie and i were carded to see an R rated movie and we ended up hanging out at the mcdonald's until my parents came to pick us up

my surprise 17th, where the night before when a bunch of my guy friends stopped by i was confused to find every imaginable age appropriate drink in the refrigerator in the garage when i asked if anyone wanted something to drink, and then we went and cruised down hwy 100 with my dad's convertible. Then the next night was the party and i was shocked with a roomful of people in our basement with the forrest scene wallpaper and i got a stereo and my first ever CD - Journey -thanks nerd!

my 25th where my "boyfriend" pulled a no show but it didn't matter because my fabulous friends made it one of my favorite birthdays -

one of my mid-thirty birthdays where i was by myself in phoenix and spent the day at the phoenician resort.

many birthdays that my aunt would take me the week  before on a special trip to buy an outfit, and the one time we went to burlington coat factory i found this adorable lavender sweatshirt skirt and top with purple hearts cut out of the material - the same purple sweatshirt i got blood all over when i walked into a glass door in florida

many birthdays that instead of a present my grandma dreske would take me for an afternoon out to lunch and then hand me an envelope with a check

i saw an interview on the local news the other night saying that people either collect things or experiences,  and most of us to a bit of both - and it made me happy that when i was reflecting on my birthdays, despite i am sure getting really wonderful presents, that wasn't what came to mind - it was the time and effort and feeling that they all had - so thanks mom, dad, my sister and friends, for always making my birthdays special -

Monday, February 6, 2012

Between a 3 and a 7

Today, i have been no where close to functioning between a 3 and a 7 on the emotional scale, and after watching the kristen bell video below you will understand what i mean.  trying to get to my doctor appointment by 10am today, was so overwhelming i spent most of the time, fighting off tears while trying to get up, eat, feed sophie, get dressed - it all seemed like just too much.  And much like I can't understand how one comes to love a sloth to the point of tears, most people will not be able to understand just a normal morning bringing one to tears, so i will try to explain...

what it actually feels like to have chronic fatigue - its tough to explain, just like it must be to let your husband in on your breakdown at the thought of a sloth - so this is what i came up with - its kind of like the movie ground hog's day, where every morning when you wake up with moderately the same symptoms over and over, you begin to wonder if it all isn't just a dream.

In this dream, you took an insane exercise class - that you have never done before, then despite feeling awful (let's pretend you are in your early 20's) you figure, won't hurt to go out.  So you go out for the night and eat too much and drink too much.  Then your friend says, you can't drive home so you have to sleep on their old crappy futon and your so restless from being out and not in your own bed, they give you an ambien to help you sleep.  And as you are in your deepest REM sleep, muscles sore from your work out, stomach kind of queasy from too much of everything, head foggy from an ambien, just at that moment you are startled awake.

Sidebar - I have a true funny story about this, my cousin was doing a lot of cross country NYC to LA traveling for work, on this particular flight he was leaving LA on the red eye and would be in NYC in the morning where he would need to be bright and sharp for another day of work.  So as he said, he only takes an Ambien after his flight has left the terminal and gets air bound - so after they were cleared for take off he takes the medicine, and what feels like a minute later is startled awake by a flight attendant, explaining they have landed due to mechanical problems, and he needs to de-plane.  The catch - he's now in Las Vegas.  As he amusingly explained he is in the deepest of Ambien fogs and walks off the plane to the lights and sounds of the slot machine filled Vegas airport!  This is what i am talking about...sidebar concluded...

So, your day is beginning with this uneasy aching head foggy feeling, and despite being asked the simplest of questions like what would you like for breakfast, or can you take the dog out, you feel like you are being drilled by a Marine sergeant all the while being asked to solve complicated math problems.  Everything around you feels hyper-stimulized - and you begin to question, did i go out last night and drink and dance and eat too much all after taking a crazy spin class, and sadly the answer is no.

And days like today when you notice the weight of a fork, you wish it was groundhogs day and this was a big crazy dream.  This is what the worst of it feels like, and getting to my doctor appointment by 10am was an act of mercy, and i told her i sure hope i am having a difficult time seeing the forrest through the trees and despite knowing this treatment is the ultra marathon not a sprint - or quick fix therapy  i am feeling a bit deflated - thus the emotional roller coaster of despair (less than 3) and full blown optimism (more than 7) and I remind myself...i have a chronic medical condition, and these treatments turn the table on it and make it an acute illness so that my immune system wakes up and takes action - I can understand it rationally - and medically - emotionally some days its hard to take.

So, while i was going to write about my fabulous birthday parties my mom came up with when i was little, as that was what came into my mind as i was getting my hydrotherapy treatment - this is what spewed out - kind of like a good cry - when there are too many emotions, to get a coherent thought out - this is my good write - 

and on that note i will put the link to my favortite viral video, you can't help but laugh with her and understand that conversion of emotions that leave you speechless, and a good cry is all that you can manage - thank you kristen bell for sharing -

Everyone has had their sloth moment...enjoy! hope it makes you smile too!

Saturday, February 4, 2012


I must admit I am in a really bad mood.  I just left the grocery store for the second time.  I went once, got so fatigued and overwhelmed I got what I needed and headed back.  Rested, ate, and was irritated with this entire situation I got enough strength to go back.  I am also in a bad mood for reasons that need not be mentioned, just enough to say do you have that individual in your life that is like a tic under your skin.  And even if they aren't doing something that should make your skin crawl, it does anyways.  I remind myself of every cliche thing my mother would say about people like that, but despite striving to be my highest self - sometimes the tic wins.

And I don't know why but for some reason it seems to be the time to finally post the one I have edited over and over, and no matter what it never seems quite right.  Maybe because I know even in her zen higher self state, Julie would be able to put this tic under my skin in his/her place, so much better than I ever could - so if you are watching from above, do something a little sneaky!

I briefly mentioned Julie and her blog, www.cellwarnotebooks.blogspot.com in an earlier post, but it has never seemed sufficient.  I have never signed into this blog without thinking of Julie.  I had been putting off writing because I didn't have the energy, nor did I really connect with the blog forum - all that changed when I read Julie's words.

I think its fair to say that anyone who knew Julie Forward in high school and knew me at that time of our lives on the surface we were most certainly excellent examples of two sides of a coin.  Julie had a laugh you could hear across the hallways, she was fearless and could put most people silent with a look of those piercing eyes, she was an extrovert when necessary but held the mystery of an introvert.

But when I read Julie's blog, all I saw were our similarities.  This experience of connecting to her writing, is not mine alone, that was one of her many gifts as a writer, taking her experience and like a looking glass, it not only gave you a glimpse into her heart and world, it gave you a glimpse into your own.

Julie faced a terminal illness, which is night and day from my current challenge, and how she found the physical and mental strength to write during this time is awe inspiring.  Julie was also a mother, and to face the reality that you are not going to be able to be present for your child will always be a part of Julie's story that forever breaks my heart.  Julie was precise and poignant in her writing; these words will give her daughter an insight into her mother, that some of us never experience. It is an extraordinary gift.

Julie also possessed a physical courage in taking on the pain and side effects of brutal treatments and a brutal illness.  I think anyone who knew Julie, would expect nothing less than a fierce battle - and most days its impossible to believe she "lost" it in this world.  The years I knew Julie, I would have bet the house on her no matter what the wager.  As I wrote on her caring bridge page, she lost the battle but won the war.

One of my favorite parts of a book are the opening forward, dedications, acknowledgements and thank yous.  When I first got a kindle, I didn't realize I had to back page to find them and I found it impossible to begin a book without reading them.  They offer a tiny insight into the author before you leap into their world, true or fiction.  Some are very direct, some are cryptic, a special message only the receiver would understand.  I enjoy seeing a pattern of the dedications of the same author on their different books.  Its the author's Oscar Acceptance speech of sorts, without the fancy red carpet.

So, if this was a book, this is my Forward - My Dedication
Chronic Fatigue Chronic Hope, would not have been written with out the courage, hope and beautiful writing that Julie Forward DeMay paved in Cell War Notebooks.  It was her selfless exposure at a vulnerable time that opened me up to a journey I thought of taking, but my critical self was too scared to take. It doesn't matter what form this blog ever takes, it is in taking it that matters, and Julie you taught me that.  From the bottom of my heart - thank you.  You wrote a blog, that became a book, that will live on and inspire forever.

Thursday, February 2, 2012

Leap of Faith

The last 24 hours I have felt a bit like I was walking on a tight rope, just focusing on a point across from me to get to the other end of the line.  Balancing between feeling mildly sick and quickly going to the other side.  That's the flip side of trying to get well, the treatments often make you sick.  I did well until about four hours after my treatment and then without warning a massive shift began to take place.  I had to concentrate on my arms and legs, holding them tense to prevent them from shaking.  I was starving, and had the feeling of a blood sugar plummeting, all while feeling nauseous.  My left side, under my rib felt swollen and bruised.  It felt like a mild flu, I knew it could be worse, but that was the thing - I kept getting worried it was going to get worse.

I read an article where Michael J Fox said his favorite quote was something to the affect of, "if you worry about something and the worst case happens then you have lived through it twice."  I try to be mindful of that quote and stay in the moment, however most times I am not that successful.  It should have been a clue when at a young age I wrote a poem titled, What If... It seems I never was blessed with that wild abandon of a teenager, where life feels invincible.

I constantly question if I am doing the correct, or best course of treatment - and only when I begin to surf the web and see post upon post of people suffering like me and trying any number of drug treatments that are not working - I remind myself, there is no perfect path paved for this illness, and much like any illness there has to be a leap of faith.  Last night, I was staring out the window, I focused on how lucky I was, many more people have illnesses where their leaps of faith have life or death outcomes.  Others face illnesses where there is no treatment to be found.  So if I have to endure flu like symptoms to get to the other side of this, I can take that, its the worry in my head, will this get worse - what new symptoms may develop - what if on top of this I get cancer - the "thinking" of what ifs never seems to end.  My dad has always told me, "you think to much" and this is true.  If I was healthier I probably should have been in the CIA, I can't help but walk into a room or a situation and analyze every possible scenario that could take place.

I know personally individuals that have leapt over mountains for their health and in comparison I am jumping over foothills.  But perhaps that's the problem, the what if...I have never been  one to think "why me" more like, "why not me".  I have been in the extended circle of great strength, a double lung transplant, ALS, pancreatic cancer, severe shingles.  I have witnessed or been privy to stories of these triumphs and tragedies, and I think of the faith these individuals needed to have to go on every day.  I am not talking of faith on a sprititual level, faith in themselves.  Faith that they have more strength than they thought, more courage than they thought, more mental toughness than they thought.  Faith in the doctors that come in or out of their lives.  Faith in new treatments, faith in others that they will not disappoint when you need them most.

I swayed and lost my balance, but I didn't fall last night - somehow I had faith that it would get better not worse, and at 6pm this evening I was lucky enough to walk down the courtyard with my loyal Sophie and see a gorgeous Arizona sunset.

Wednesday, February 1, 2012

Let's Talk Countertops

I've been in Phoenix since the 10th of January. Today was my third blood treatment, but more importantly the second this week.  The goal was to be strong enough to handle two in one week.  And despite understanding behavioral medicine, and the theory behind it, I can almost guarantee that even if I had 50 of these treatments I would be as nervous for the 51st as the 1st.  Part of the problem is that they are a bit unpredictable depending on your hydration, overall well being, thickness of your blood, plumpness of your veins - you get the picture.  There are many variables that determine weather the treatment will go like clockwork or go like today.

Normally during these procedures, I grill my doctor on personal details of her life so I can be distracted that at the moment I feel like a victim of a vampire - this normally works quite well, and she is generous enough of spirit to go along with my banter.  Its quite impressive how she can do this all the while being laser focused on the procedure she is performing.  Its much like the surgeons, or the fictionalized versions I see first had on Grey's Anatomy, having a heart in their hand while discussing so and so's recent breakup.

I knew I was going to get the treatment today.  I knew its what I needed, and I had a feeling that she would go ahead with it.  So while I started out quite brave in heart,  I quickly became a chatter box one minute, closing my eyes the next listening to Adele, and then like at funeral when you are so upset you burst out laughing - well I had that emotion too.  We started on the left arm, and the blood was just not moving into the tube, then switched to a butterfly.  This isn't working, need to switch arms, clamp, hold - can I get a homeopathic to calm me down, in a second - your blood can't clot here - okay too much information poke me again - this time, working much better, after five not so pleasant in vein movements of the needle.  Then, time to get my clean blood back, hallelujah!  Wait, not working again, won't back in either.  Stop, hold, re-prick - new vein.

At this juncture I have moved to discussing my doctor's possible bathroom renovation, I would have been more invasive in my questioning, but there was a young man next to me getting an IV and even in my delusional keeping hysteria at bay state, I wouldn't ask if she was dating with someone else in the room - it was a nice check on my mental state, I hadn't yet gone off the deep end.  So countertop options would have to make do.

Forty-five minutes later - I think - I have no concept but it felt like an eternity, it was over.  And again, I felt like bursting into tears - but I didn't, I made it, and now after feeling like a just got through the iron man, I'm in bed - but you see the silver lining is yesterday I had an hour.

I went to the pool, did my leisurely laps, took a shower at the hotel and when I was getting dressed I looked in the mirror, and my old self was staring back at me.  My eyes were brighter, I wasn't so puffy from swollen lymph nodes under my neck, I looked alive.  And when I got back, my boyfriend commented that I looked really chipper - and that's the thing - I was.  I had one hour, one hour where emptying the dishwasher was a piece of cake, my body didn't hurt everywhere, my head felt clear and my nerves felt calm - and that hour is worth every minute of the draconian procedure that much like Edward loves Bella, where he loves her but is afraid he will kill her, that's how I feel about these treatments - two contradicting emotions at the exact same time - because that hour was priceless.

If that hour can turn into two, then four then a day or a week - I'll do it again and again.  And we are thinking sand color for the countertops -

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