Wednesday, March 29, 2017

Few Chips…golf not potato that is

Camelback Mountain

One of my biggest challenges is that it takes most of the day before I start really "waking up" so to speak.  When an article awhile back called this the Dauer State illness similar to hibernation I get that; that's a bit how I feel everyday slowly trying to awake or get adjusted from a deep body sleep.  When I'm in Phoenix what I struggle with is that I need the help from morning til after dinner and often right when someone is leaving I begin to have a bit of energy.  Like last night, the temperature outside was ideal but I am in a pickle so to speak.  I can't really try to go for a short walk or hit a few golf balls because I need to rest in case I get sick in the middle of the night, or Sophie decides she needs to eat again or go outside downstairs, or just in general if I even take a shower and then crash what will I do.

Still bit confused with the U

Last night I decided to put caution to the wind and go hit a few chips.  It was absolutely beautiful outside one of the few remaining evenings I am guessing that will have even the slightest chill in the air.  And that is what is most frustrating at times.  I hit about 6 chips and then used my "U" aka utility wedge that I've now used twice to hit towards the tee box.  Walked to get the ball and walked back inside.  I felt quite good indeed.  Which is what makes being awoken at 3am so hot, sweaty and nauseous all the more frustrating.  I was up from 3 am to 4 am.  I do my new found ritual of looking at FB messenger b/c it makes me feel a bit calmer knowing there are a few random people, especially on the East or Midwest, that have begun their day.  I got sick and then felt a bit better.  I slept til about 5am when Sophie decided she needed to go outside, luckily I have a little grass patch that she uses on the upstairs balcony.  The two of us fell sound asleep, out of shear post sick exhaustion…a bit of okay the worst of the sick is over and now your body can relax.

What amazes me is every time I still wonder, did I get food poisoning?  Do I have a flu ? Despite this happening so many times.  It's about 11:30am now and I still can't' get any food in.  I really can't swallow anything well because it feels like it gets stuck. It could be a bit of post chipping fatigue. Then I wonder could it be I moved some things with the most walking I've done in awhile yesterday?  So maybe it's a good thing?  I can sip on coffee so I know it's not the flu.  So I wait. Repeating it will pass.

And I had last night which was perfectly lovely.  Oh how lovely it was….

Attached is the interview with Jen Brea of the film Unrest in Coppenhagen…it is in English after the first minute and a half.  I got through about 5 minutes and I just couldn't….just hits too close to home but please watch and share….

Thank you all for reading and supporting.  And I wanted to make sure I shared the good moments and so grateful I live in this lovely condo.  I do that at night too…I focus on the pillow and how soft my sheets are and how Sophie is in the crook of my legs.  How I have nice music to listen to and that somewhere 4am is 6am and mom's and dad's are busy getting up for work and their children's school and it doesn't' feel as lonely.

Tuesday, March 28, 2017

Bruised and Battered on the Streets of Philadelphia

Thank you to all the advocates for ME/CFS

I play this song a lot.  Over and over often while at the doctor getting a treatment especially if it isn't going well.  My UV Blood Treatment infused with oxygen is quite simple.  Blood is taken out goes into a glass container as if you were giving blood then after it's collected the clamp is released and it goes through a micro filter, then UV light all while being infused with oxygen or ozone. It's simple but tricky because those of us with this illness have low blood volume, blood with infection is often think or you are dehydrated, heparin is added to prevent clotting.  On good days it can be think about 20 plus minutes.  On bad days almost an hour…with often the vein deciding it doesn't want to take this blood in, so then there is a rush to find a new vein that will take it and if not then this was all for not.  I use to get really scared when this happened.  Not so much anymore, I know to close my eyes move my arm often in uncomfortable positions and my doctor is quite cool under pressure.

So Streets of Philadelphia. I play it because one it's oddly soothing.  It reminds me of the people that have suffered much worse before me.  Having an illness that they had to fight for funding, fight for treatment, and fight for dignity.  Top that off people were scared of them.  And the end result in the beginning was certain death.  We lost a friend to AIDS.  He had worked for my dad throughout the years.  He was a talented decorator, and my parents took him under their wing when all was collapsing in his late teens early twenties; pre AIDS.  Just that early pre mid life what am I going to do with my life 20 year angst.  The saddest part was that years later he was so happy, in a committed relationship with a kind, caring doctor.  They had a beautiful home and garden close to where I live now.  I drive or ride past that house most days I leave my own.  In the weeks before he passed his partner had a group of close friends over, I think I was in my early 20's.  Todd was up in the bedroom too weak to come down so people went up for a few minutes to say their hellos which we all knew were goodbyes.

It was an eclectic group of people.  Sitting there it felt more a part of a Nora Ephron movie than real life.  HIs partner left Milwaukee after Todd's death - stating it was just too hard to be in this area he needed to start over.  My mom's front garden still has many of the flowers he helped her transport because he couldn't believe she didn't have one!  I laugh now thinking he would be so thrilled my parents finally remodeled their house…he was a bit snobbish about that.  He had had a really difficult upbringing and early adulthood only to find happiness and then have it taken away by that horrible disease.

I was really healthy at the time.  Never did it cross my mind I would fall into an unknown illness, that has stigma, a different one but stigma none the less.  I've decided to try the main drug that is part of the Stanford protocol Valcyte.  Of course this princess can't seem to find a drug or treatment that isn't insanely expensive, fancy even in my illness (sarcasm).  What is interesting about Valcyte is that it was first used for AIDS patients to combat CMV (cytomegalovirus).  To be honest I was very surprised my Naturopathic Doctor is so on board.  I'm a bit concerned about side effects, the unknown, but as we discussed if looking at course of this illness after I got sick with recurrent EBV a few years ago I had an acute bout of CMV.  I didn't have any signs because I was already ill but when doing a EBV panel we added CMV just to rule out thinking I would have had antibodies, not expecting an acute onset.

I have a bizarre full circle calming feeling about the connection this drug has to AIDS patients.  And our community has really looked and studied their community and amazed at what they did to demand an illness not be demonized.  So perhaps my connection to Bruce's haunting words I can only hope is a foreshadowing of hope I hadn't seen coming.

I don't often share photos of what my week looks like but decided this post seemed fitting.  The following were taking over the course of 10 days and I am very grateful for my friend giving me home IV's when my veins cooperate and help the Blood treatments go better.  I am grateful for my doctor constantly being open minded and a rock of support.

This post is dedicated to Todd.  You were a joy and are missed but never forgotten. And all those that every day fight for funding and knowledge to help solve this disease. #CanaryinaCoalMine #ForgottenPlague #MEAction….

I was bruised and battered, I couldn't tell what I felt.
I was unrecognizable to myself.
Saw my reflection in a window and didn't know my own face.
Oh brother are you gonna leave me wastin' away
On the streets of Philadelphia.

Chills after treatment

I walked the avenue, 'til my legs felt like stone,
I heard the voices of friends, vanished and gone,
At night I could hear the blood in my veins,
It was just as black and whispering as the rain,
On the streets of Philadelphia.

Ain't no angel gonna greet me.
It's just you and I my friend.
And my clothes don't fit me no more,
A thousand miles
Just to slip this skin.

View looks like the ocean
Night has fallen, I'm lyin' awake,
I can feel myself fading away,
So receive me brother with your faithless kiss,
Or will we leave each other alone like this
On the streets of Philadelphia.

Thank you for your music

~ Bruce Springstein

Saturday, March 25, 2017

When We becomes Me

Blue jeans.  It's what I do when I feel a lack of control over the ever changing symptoms…I put on blue jeans.  Seems that one can't be that sick if you are wearing denim.  We use to dance and laugh in my friend's mother's basement to everything Neil Diamond...especially "Forever in Blue Jeans.." And often when I grab mine in this not so pleasant state that song and memories play in my head...and the Blue Jeans served another purpose, a pleasant distraction to a different time and place.

It's a pretty universal truth that through a course of a lifetime by circumstance or choice "we" becomes "me".  I've found oddly the easiest "we to me" transition was the end of my 10 year relationship in the midst of this illness.  It forced something that wasn't going well for either of us to end. The most difficult part was that he was no longer a part of our extended family anymore.  Something I know he cherished.  My grandparents became his.  Not having a traditional family, this was the hardest to watch be lost.  I'm sure that is what propelled us longer than good for either one of us. It still is difficult, I miss him often but it was the right decision.  When we could "do" things together life was much easier …of course.  But I ask many to try and hold a relationship up when everything you love to do is taken away.  Our shared love of activities certainly had masked our insufficiency's.

The hardest "we to me" transition many face comes through natural life stages, empty nest, loss of a loved one or transitional times when friends get married, have children and their associations broaden and change.  This already difficult transition for me however came simultaneously while I was  getting more and more ill.  More and more confused and more and more isolated from the world around me.  I just didn't see it coming that I was no longer apart of this "we" friendships that I had cherished and cultivated for 20 plus years.  But then there are these rare moments in a really somber occasion that took me back to being part of that "we" and remembering what it is like to pick up after 5 years of not seeing someone and feel like it was yesterday.  So this is that story....
I had a pretty idyllic childhood.  There was chaos around me that I was completely unaware of that could and probably should be a story in of itself if I ever get to writing it.  Sure I had the mean girls issues, the not the greatest at sports situation going on, but I always had really good friends.  Sometimes these friends left me for cooler groups, but despite that hurting at the time I had a pretty decent perspective that it was self preservation and not really about me.  Not to say it didn't feel that way.

Funny how life works, lockers.  Yep, by alphabetic order in High School.  Lockers and homeroom; DRE and DRO of last names is how Mel and I reunited as friends.  We had attended Dixon Elementary school together until it closed after our 4th grade year.  So we all scattered to the other elementary schools in the district and then would all be reunited in one massive cluster F of a middle school for those two brutal years of 7th and 8th grade.  Those two years are a messy blur of post mono chaos.   We then dispersed to one of two High Schools.  At BCHS that is where the alphabet Gods looked down on me and Mel and I reconnected.

Mel and I recently attended the funeral of our close friend's mother and as we all sat there mulling old stories we reminded the "group" that we were epic dorks unlike them in High School.  That was until Melanie made the "Freshman 40" and bless her heart I came along for the ride.  Melanie is gorgeous.  It's not a matter of opinion - it is a fact.  And for some reason in High School her Greek/Serbian background dark hair got the Whitney Houston curl.  Whitney's epic music video had come out and Melanie had that look and bingo…this "underground newspaper" the closest scandalous thing our school produced came out with the 40 hottest freshman girls…. and she was on it.  So she was noticed, not just by the guys but by the girls.

Melanie and I kept our epic dorkiness well in check as we laughed about during the wake.  As we all discussed that the "cool" girls would meet each other in the bathroom before school and exchange clothes; we were not nearly cool enough to be a part of the clothes exchange.  Then we got ourselves in hysterics laughing; side note this is one of the things I miss most about being sick; spontaneous conversations that lead to belly hurting laughter.  It is a very different experience when people come to "visit" you…there is no spontaneity, depending upon when they last came or how updated it is a lot of how are you doing, anything changed, any new treatments.  But in this circle of friends in the middle of a wake was the closest group activity with my girlfriends I have had in about 5 years.  I was grateful I had done my diligence to prepare and be able to feel well for that precious hour.


Melanie and I started reminiscing about my epic failure of a sweet sixteen birthday.  Another girl from our class and homeroom we asked to join us; and as Melanie said she was probably just being a good sport while rolling her hazel eyes at how did she end up here.  My parents dropped us off at the movie theater to see Casual Sex.  Yes scandalous.  It was a movie with Victoria Jackson from SNL and Lea Thompson; pretty innocent for having the word SEX in it; but nonetheless R rated.  And no joke, this greasy haired 17 year old in an ill fitting tux with a bad bow tie carded me.  You read correctly I was carded at the movies on my 16th birthday.  I'm not exactly sure if he wouldn't then let us in to any movie knowing we would just go to that one, or there was nothing remotely we wanted to see.  However I know he wouldn't even let us in to use the pay phone - even as we said 2 people will wait outside the ropes.  So we walked to the nearest McDonald's to call my parents to pick us up.  At this point remembering the entire thing, I really thought my little weak spleen was going to burst wide open with tears running down our eyes at the absurdity of the situation.  Luckily for me it was the age of John Hughes' movies, so I had 16 Candles to console this less than remarkable coming of age…however there was no Jake in a red convertible…oh well.  My parents hadn't forgotten.

We were in our own little word.  That took us to remembering when we stayed up til 4am to make some hideous pants.  Those were how our Friday nights were spent.  The trip down memory lane in a group of old friends with shared memories was a gift I haven't had in a really long time.  I hated why it was happening; this was now the 4th close friend that had lost a parent.  We are now at the age our parents were when we all first met.  It's a unpleasant feeling of time passing.  Generations shifting.

Soon after my epic fail of a 16th birthday by my 17th everything had changed.  We slowly actually became really close friends with a larger group; most I still have some contact with today.  Others are as close as siblings and save me day in and out with this illness.   The night before my 17th birthday I was home and about 5 of my guy friends stopped over to see if I wanted to take my dad's 1968 Mercury Convertible out for a drive down Hwy 100.  I remembered I went into our refrigerator in the garage to see if they wanted something to drink and though was always well stocked with drinks - it had every imaginable soda in it and thought that's strange.  So we all left and made up and down drives cruising Hwy 100 most likely ended up at Gilles a custard stand.  Most likely also losing a hubcap off the car and someone going to chase it down.  My friend Mark and I had looked for that ill fitting hubcap on many a side roads after a quick turn.  Again laughing, always laughing being in a field searching for a hub cap…and the relief knowing my dad wouldn't freak out if it couldn't be found.

Then the next day when I got home that evening "surprise" there were about 20 people in my basement for a surprise 17th birthday party.  Oh how a year can change everything.  I got a massive stereo system  - Stephanie bought me my first ever CD Journey's Greatest Hits.  My friends found the "dance costume bin" and well I'm in Phoenix otherwise I would share some hysterical pictures from that night.  We laughed a lot.  I just remember Junior and Senior year as lots and lots of laughing.

At this awful occasion; I was given a gift it was the first time in a very very long time I felt a part of anything.  I felt young and healthy again and at ease as I was all those years ago.  I knew what it had taken to get me to this hour and I knew how long I would pay for it…but I had made it.  I could understand how people there wouldn't believe how bad it can get.  How sick I am 95% of the time because I didn't look sick, didn't act sick...but many things fell into place.  First, the funeral home is less than 5 minutes from my home.  Second I gave myself time from flying home til the funeral.  The two days after the flight in I could barely move; and I hydrated and rested complete bed rest to hopefully gain some strength.  My parents came to make me dinner before, I know the right clothes to wear that distract, I know to find a chair immediately.  But I can easily understand until you are with me 24/7 for a few days that I seem like a mirage of an illness.  The next day I couldn't get to the church until it near ended, and couldn't make the lunch after.  All I could do was crawl back into bed....

I am forever grateful I didn't get sick before most of my friends got married because we took these epic Bachelorette weekend trips.  This was the "we" the "Ladies" I was part of most from high school with the addition of some good friends my friends had met in Madison and beyond.  It wasn't a clique it was a group of friends that despite physical distance found a way to still find time once a year at least to get together.  I had traveled to Atlanta to see where they lived for a brief time, then back to Atlanta for one of those Bachelorette weekends.  Vail for another.  Huntington Beach for another.  Then the weddings.  Then the baby showers.... I look back and think where did I let everyone down that all of a sudden due to my circumstances I was dismissed from the we.  Did people not believe me…were lives just too busy…. was I not communicating...

Which is in part why I started writing this blog.  I kept missing or canceling on things.  And then glory be to god forsaken Facebook was blind sided when I saw the former "we" minus "me" all kicking it up on the rivers of Colorado.  To say I was heartbroken would be an understatement.  No one told me.  Of course if they had asked I wouldn't have been able to go.  I had known about two other yearly trips to Madison.  60 minutes away, but for me mine as well been a continent away.  I got it; same routine Madison was the epicenter.  I tried once to make it, got half way there and felt so sick - with my mom driving had to come home.  I guess I was just shocked; not once did anyone think maybe we could go to Milwaukee instead of Madison and then we could do some stop in at my house or hell party while I listened.  But the trip to CO without anyone calling to say hey we know you can't do this - but we will send pics or something - it was as if I had disappeared or died and no one cared.  Or people justified "well you can't do this anyways" or the of course "you've always been anxious"….yes I have always had a cautious nervous tendency and dealt with your drunken asses like rounding up puppies for years and laughed and enjoyed every second of it.  It never stopped my life dead in it's tracks.

I slowly realized I had lost my group.  I tried. I called two people and laid it out there…this is incredibly painful - no one comes to visit, no one sends cards, I know everyone has children and husbands but if situation was reversed I would be the first to rally around not rally to ignore.  That the isolation and not being part of a group added to the pain.  In the end one person said "I will do better." It was the greatest gift one could be given.  No excuses, no "buts" just listened, heard and put away pride and not only did better exceeded better which has transformed a once solid friendship to a life line.  Others, well I grieved and realized we would always be friends, I loved and cared about this group of people - but I felt I was back to being the 16 year old -a bit always on the outside looking in.

It has taken me a long time not to be angry.  I used Tony Bernhard's wisdom that I don't know what is going on in their lives; although that was part of my frustration -  I wanted to know.  It wasn't just about me it was about me no longer being witness to them.  The reality that I don't KNOW their children or their lives broke my heart.  If I was well I would be the first to drive to see a soccer game, attend a graduation or a play.  I could not come to them yet none of them was coming to me.

I struggle often writing this blog; writing your story has to include other people…and I have aimed always to share my experience with doing little to no harm to others.  My caregivers often comment and people that know me well talk about how I am quite funny in real life but my blog isn't - and it's true - I laugh as much as I cry.  Often it's survival at the absurdity of this illness and all the bizarre drama that comes with it and maybe that's another book or blog.  This is my escape.  And writing funny takes more talent and energy than I have.  The oath as a doctor is First Do No Harm.  I toe that line often with this blog…to tell my story there is no way around sharing someone else's.

I ask myself what is the goal, is it self indulgence or is it to educate, purge, explain…I look at a lot of "funny" writers or well received memoirs and they often by necessity have a take no prisoner approach…I have plenty of stories like that in the vault like we all do and I tread the line of what is thoughtful and truthful.  What is private and what should remain a secret.  This is important to me to clarify; I don't believe these people don't care about me, but I think perhaps they forgot how much I cared about them. And the pain and burden one feels by constantly saying "I can't" when living with this illness.  It feels like failure to oneself and to those you care about.  No one gets out unscathed.  That is the one constant, but we including me can just try to do our best.

This post is dedicated to the moments that are stamped in my heart.  To accepting change.   And lovingly to DRE/DRO . xo xo dresko.

Money talks
But it don't sing and dance
And it don't walk
And long as I can have you here with me
I'd much rather be
Forever in blue jeans
Neil Diamond.

Saturday, March 11, 2017


Biltmore Sprite

I need to trim my fingernails.  I've been telling this to myself for about a week.  I look down and think my niece would say first thing if she saw me, "Heather you're nails too long."  Funny, most 4 year old girls you would think like long nails.  Not her.  But I don't paint them.  I don't like polish on my fingernails' toes always.  I'm not sure if it's the fatigue or depression keeping me from the nail clipper.  It seems like a momentous task. I haven't been out much.  Canceled the doctor on Monday; I was so dizzy or lightheaded the thought of riding in the car made me nauseous.  When I talked to my doctor by phone she said just try moving a little.  My mom's college friends were in town and they were at the resort pool; so with the steady resolve of going to a doctor appointment my care helper drove me the 3 minutes and waited in the parking lot.  I got a lot of smiles and cheers.  It felt exhausting and demoralizing and apathy all at once.  I put on a good smile, a red suit and fancy sunglasses and returned the feelings of joy that my mom's friends extended.  But I didn't feel it, I faked it...This use to be my domain; queen of the fancy.  Now I robotically made it here, get in the water walk a little, swim a little, and get out and look from the pool to the main entrance thinking you can make it back.
You would think it would elevate my mood.  I hadn't made it to the pool all year yet.  It seems to do just the opposite; because there is no momentum with this illness.  Just because I made it today means nothing for tomorrow.  In the evening my legs ache with abandon.  My body doesn't want to eat.  The food, same food I've been eating for 3 plus years now I can barely glance at.  I should be grateful.  I made it to the pool…the should's they get you every time.

I talk to my friend on the phone and tell her this feeling of depression is new and I don't like it.  It's my birthday, it is looming in front of me, I normally love my birthday…but this year turning 45 just reminds me that I thought this would be over by 45 not still in the thick of it.  And nothing feels luminescent as I glance forward.  I'm aging; which means my parents are aging; and my beloved dog is starting to clearly show the signs of her almost 14 years.  The next day I text the same friend and declare, "I'm going back to being a glass half full person, the half empty is a drag and it's the same amount of water."  Or something like that…maybe if I declare my optimism it will be forced to comply.

I was watching the pre-game show for the Bucks, and one of their stars Jabari Parker had just completed the second knee surgery in 3 years.  Means of his three year pro career 2 he will have been sidelined for…and he said "the glass is half full" and I laughed to myself.  Okay, you and I have that in common.  Then he went on to it being bigger than himself and God only gave him this challenge for a reason and he's going to come back a better player.  And that's when it gets to me…the choice to work hard and get better.  Now there are no guarantees he can work really really hard and maybe this second injury he will never be the player he could have been.  But the act of working; that's what has gotten to me…how do you work hard with an illness that punishes you for trying.  What am I trying for?  Have I gotten so use to being sick I don't even know how to be well?

All I know right now is around 6pm I got up and got the nail clippers and trimmed my nails.

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