Saturday, December 24, 2016

Christmas Eve

The last time I spent Christmas with my family was four years ago.

Christmas Eve 2012 - Laughing
Christmas 2012 - So little
Thanksgiving 2012 - Newest Arrival
I was watching the Bucks game last night and the announcer asked the GM if it is difficult for the players always traveling during the Holidays.  And the GM said during the season every day is a Wednesday.  I couldn't agree more since I've gotten ill …everyday is Wednesday.

It makes me a bit concerned when I looked back at photos. My niece was born November 2nd 2012.  So I stayed in Milwaukee for Thanksgiving.  Then my mom and I flew to Phoenix so I could get some treatments and I flew back again for Christmas.  I didn't remember that, I needed to look at photos.  And to be honest I'm not completely sure, I'm trusting the dates from my iPhone.  It scares me a bit because that doesn't feel at all in the realm of possibility right now.  Sometimes I think I keep improving but then I wonder if I'm actually worse but I'm just getting better at this new life.

The first 3 years I decided to stay in Phoenix by myself for Christmas it was a massive relief.  It's the juxtaposition between traditions that carry on but I experience them in a completely different way.  The best I can describe is the grief that many carry during the Holidays when a place setting is empty.  You carry on, you focus on the new generation but there is an empty spot that can't be filled, it is endured.  It is filled with what was and the reality that the sadness is there because there was so much joy.

The Holidays had become something I endured.  I showed up for.  But I could no longer enjoy all my favorite foods.  I could no longer help wrap the presents, prep any food, help decorate the tree which to be honest was never my favorite but when you can't of course you miss the faux dreaded task.  Can't help clean up, the noise starts to get to me, lots of people many fighting off colds.  It's all right in front of me this amazing family and friends -all the memories of how it use to be.  And it's just too much.  So the first few years alone in Phoenix went quite well.  I have my dear helpers that make it festive when I don't feel like it.  I can FaceTime and enjoy from a distance.  It's really okay.  It's just like another Wednesday.

However, this year I couldn't shake that this is the new normal.  I think the first few years I convinced myself it was a blip…it was necessary piece of the puzzle to get well and get back to normal.  This year my youngest niece is 4, and she has no memory of me being at a Thanksgiving or a Christmas.  This year I just feel alone, but not really lonely.  This year the last week I have been so sick that getting to tomorrow as I said is really all I cared about.  Nostalgia would be asking for too much.

So I woke up this morning and was about to call my parents and started to cry.  And I didn't want to start my mom's day off with me crying.  It's early - it always gets better later in the day.  I don't feel as bad as the last 4, that's progress.  I will get stronger as the day goes on and will FaceTime with everyone.  But I just couldn't shake the Christmas Eve blues.  So I decided to call my best friend - and cry first with her and get it out of my system.  And then this happened….

I'm holding back tears saying hello and I hear all this commotion in the background.  
Me: "Hi, Where are you?" 
Steph: In between scolding her two eldest children, "We are at the mall in line for Santa"
Me: "That's right you do that every year don't you.."
Steph: "Yes and normally there is no line and I forgot that with the Packer game it's a mob scene…we've been in line 25 minutes.."
Me: "Oh so you're going to leave.."
Steph: "No we're staying…" Now she's trying to round up her two eldest that are for some reason with her at Talbots.  Guessing her husband and youngest are in the line.
Me: "Oh my goodness your husband is a Saint" "I called because I needed a good cry before I called my parents and am wishing I was home…right now chilling in bed feeling not great but not horrible doesn't seem all that bad"

We both were laughing…and see just like that it can turn around.  This is not the ideal Holiday for me.  It isn't even close.  But at the end of the day I have what I need.  I have a loving family.  I have food on the table…mind you the same limited diet but I don't have to check my bank account to buy it.  I have friends that make me laugh, listen to me cry, listen to me say…how did this happen I don't think I can do it another day.  I have an amazing dog.  I have helpers that are a second family and don't let me forget that.  

Yesterday I thought all I would want for Christmas is one day.  One day of my old life prior to this illness.  And it reminded me of all the people out there that would like one more day with those they love.  That is what I wanted.  One more day with someone I loved…my old self my old life.  But grief doesn't work that way; because one more day I would beg for one more hour, then 15 more minutes, then even one more minute.  But then that silly conversation happened with imaging Stephanie at the mall and the chaos and the laughing and I thought I can do this new life one more day.  It isn't easy, it isn't what I dreamed…but I always go back to that saying we don't know what is on the other side of the mountain.  And the moments I treasure would all be sliding doors different.  And at my best I try to switch my mindset to a tip I heard somewhere which is "I get to"...

I get to FaceTime with my family.  I get to escape the winter.  I get to watch the Packer game.  I get to sleep in a comfortable bed and wake up and open presents from people I love.  And in my most optimistic moments I get to see what this challenge and this illness will take me.  Maybe no where except that it's just another Wednesday and I made it tomorrow and that is enough.  More than enough.

As I am writing this my phone rang and it was Vasil, who use to drive me to the doctor before I got full time help.  Now he takes us to and from the airport.  When my mom left two weeks ago I tried not to cry and V gave me a big bear hug and said it's going to be okay.  This is how I am so blessed.  A few years ago when I wasn't well enough to drive myself to the doctor for the first time I called the Biltmore Hotel and asked for the Valet.  I explained I lived a block away and could they send a driver over to pick me up I was short on time and this was before Uber.  Okay let's be real - I wouldn't have probably thought to call Uber. And Vasil showed up.  He emigrated from Bulgaria with his wife.  Where he owned a night club and his wife was an attorney.  She now works at a resort and he is a driver; and he is always full of Joy.  So the phone rang and he asked if he could swing by and brought me a gift from him and his wife.  This is what I get.  I get compassion, and love and the gift of someone that one day took a sick girl to the doctor and became a dear friend.  The 5 minutes I prepped for a visitor and then the 5 that I used genuine enthusiasm while he was here has landed me exhausted…and I couldn't be more grateful.  This is what I get.

This post is dedicated to my two dear friends who lost their mother's in the last month. My heart aches because yours ache.  Your strength amazes me.   And my dear friend who tragically lost her nephew who was also my old friend and colleague whom I adored watching live loud and live love.  Whatever Holiday you celebrate may you get Joy.

Tuesday, December 20, 2016

Reclaim Part 1

This idea has been in my head for the last 3 weeks.  I had this post "saved" and opened and saw it was empty.  I guess that sums up the exhaustion.  Three weeks ago I reclaimed a bit of my old self.  On 24 hours notice found a flight out of Phoenix back to Wisconsin.

I'm too tired to give the story the time it deserves.  As I write this I had my first IV yesterday since I got back.  A chelation of EDTA.  Did I mention I hate IV's.  It's the third night in a row I've woken from a restful sleep with chills, or sweats, nightmares, abdominal issues.  It's the third night being home alone at night here in Phoenix.

But three weeks ago I reclaimed a bit of my old self, my true self; and that has helped when I've been up alone and scared I remind myself that she's in there.  That is who I am - not this illness.  The person who likes to make last minute flights and move forward.  Not be still. Capable.

Most days this disease wins, or at least it feels like it does.  When I'm asked the seemingly innocent  question, "so what have you been up to" I stare back at the questioner realizing we don't really live in the same world.  I have no way to answer that in a context that would make sense - I have been up to getting to tomorrow.  That is what I am doing right now…getting to tomorrow.

Wednesday, November 23, 2016

And Then This Happened….

Can you hear me?
I'm in California dreaming about who we used to be
When we were younger and free.
I've forgotten how it felt before the world fell at our feet.

In performing it's called breaking the 4th wall.  So I'm going to break down that wall in letting you all in on how I ended up going and then getting to see the Adele concert.  As I printed out the lyrics above, I realized how they resonated with me not about a former love, but of my former self.  A few days ago I said to my mom, do you think it's possible if I slept really really long I could wake up and it would be 1995 again.  When the world was at my feet?

A year or two ago my cousins decided for Christmas their gift to their mom, my aunt, would be a girls weekend.  The place really didn't matter as much as the idea to spend time together without the distraction of children, husbands, a get back to basics girls weekend to take time once a year despite the fact they both have three children and extremely demanding careers to take the time to be together.

My cousin had the opportunity to see Adele in Chicago last year and as she is a more die hard Pink fan went with enthusiasm but not thinking she would be blown away.  Her sister, the one with the talented voice in the family, who really missed out on American Idol type shows is more in my world of die hard fan.  So with only a few concerts left they quickly put together a trip to Phoenix…yes Phoenix in August - so clearly my home was available.  They were a bit nervous if their mom - lol who wouldn't be - could handle the heat…but felt it was worth the shot.  And then BAM…Adele put out the teary hoarse voice video that she needed to cancel her second concert (one that was already a make up) in Phoenix due to a bad cold….but don't worry she would reschedule.  Yeah, no worries if you LIVE in Phoenix, but rescheduling four days before Thanksgiving not really the easiest trip to make back.  

I called my cousin on Monday, knowing their mom had just traveled to see their brother in California, to see if at least the two of them decided they could last minute come out for the show.  It turned out to be a no go.  I had asked right at the beginning if they didn't go to let me know because I would attempt it.  I felt a bit uncomfortable; I did go to the Bodeans last year for half the concert, but the venue was smaller - the tickets far less expensive, but Adele…everything quite the opposite.  My dad also mentioned it - and said he didn't mind paying above market price, because he knew I wouldn't push the issue but wanted me to have the chance.  I had thought if they did come back for the concert I for sure would scalp a ticket and attempt to go with them.  They weren't coming, so it was me and Christine for our adventure.

I printed out the tickets and saw the word "upper" and my heart sank a bit.  The night prior to the concert my whole body hurt and I couldn't keep my eyes open past 9pm.  While I was in bed I kept getting little flashes of heat running throughout my whole body…and thought for once it feels like my body is "working" to fight something off.  This was different from my normal night sweats.  I just slept and when I would startle for a moment kept telling my body - well done - fight whatever it is off because you have a mountain to climb tomorrow.  I woke up at 8am and nothing felt right.  I immediately got a rush of heat and sweat up the back of my neck and rushed to the bathroom.  This is not good.  The body pains were bad, the rush of heat kept coming and the trips to the bathroom didn't seem to stop.  I called my friend and started to cry.  I think I have the "real flu" not my normal "flu".  The smell of coffee that Chrissy brought the smell I normally crave was vile.  I called my doctor's office - I had a previous appointment that I canceled to get to the show.  My appointment was still available to do by phone.  Around 10am I messaged my other cousin who was in town with her husband's family and said the tickets are yours - I can not imagine this turning around- and don't want to waste them.  She kindly said you have 8 hours rest and see.  By 11am I couldn't' get any food in but all of a sudden the smell of coffee returned to it's blissful routine.  Okay - so if I can get coffee in this is my normal sick not flu sick.  This may be possible.

At 2:30pm I had my appointment.  My doctor recommended 2 homeopathics - one in case it was the flu  and one if it was my normal flu.  If you think homeopathy is a joke, that will be until you are prescribed the perfect remedy and feel your body respond.  By 3:30pm I could attempt a little food.  I can't tell you how many times Christine went up and down the stairs by now.  

Since this illness, I have become a master at knowing my circumstances.  I am like the team they set up before a President arrives at a new location.  So I had called the arena and after a 30 minute wait asked about the handicap - no stairs seating.  Unfortunately they were all already accounted for - since it is first come first serve.  She did suggest I could come at 6pm and go to customer service.  However, I know I have about an hour before I start fading.  So that wouldn't be possible.  I then asked given our seats what was the best point of entrance…South.  Okay - check.  Then I asked what time did Adele start the performance - 8:15pm.  Alright. Got it.  My concern was to bring the walker or not.  Yes, that's a story for another day.  I need it more for sitting than walking.  But add to my claustrophobia - elevators don't work -and with the stairs to get to the seat - we would have to carry it to our seat which wouldn't work.  Also the entrance nearest to the seats was not close to escalators or elevators.  So all these things go through my head.  What is best of not greatest circumstances.

So back to the day.  I'm half asleep but body aches are so bad around 4:30 decide to force myself to Epsom salt bath.  Alright things are starting to turn around.  I get out of the bath.  Chrissy brings me chicken and rice and a salad.  I can eat this.  It is staying down.  I get to turn on the Bucks pre-game show which brings me a calming routine.  I look at Chrissy and say- how is this possible.  How - right this second I feel almost normal.  How does this happen every day?  Some days I never get that normal feeling - and I don't know how long it will last.  She looks at me and says I have no idea.  And if someone wasn't here with you all day they wouldn't believe it.  I said I know - I barely believe it.  Apparently I am currently the Phoenix rising from the ashes…time will tell.

At 7pm I am hungry again.  I hadn't eaten much in 2 days - this is a good sign.  So up and down the stairs again and a half of ham sandwich, yogurt and raisins.  I have arranged for Vasil to drive us.  This way at any second if I need to leave - there is no walk to a parking lot.  No me standing by myself.  I had also messaged him saying if at 7pm it looks impossible - my cousin is definitely out - the tickets are yours.  Vasil…who well again, another story - is so kind he said - we do the best we can - you can't go in we don't go in.  But we will try.  My sister texted…Goal 1. Get there Goal 2. See her Goal 3. One song.  Okay - yes I can break it down that way.  

We timed it perfectly. No traffic.  South entrance - walk in the usher says you have 5 minutes before Hello.  Golden.  Deep breathe.  Goal 1 down.  We turn to the right and the usher said - up two flights of stairs.  Okay - I can do 2 flights.  We get up the two long flights and it's the 200 level Suites.  There is a strong fish smell they must be serving that makes my stomach cringe…We being to hear the first words being sung.  The usher said - two more flights.  Okay.  I can do two more flights.  Chrissy now has my purse.  Two more flights - Mother F'er are you kidding me…the second level of Suites.  Oh sorry one more flight.  Chrissy looks at me…and I'm like what can we do - my heart is beating so loudly I can feel it.  We get up the final flight.  Pause at the aisle.  And like okay we did it.  Enter, Hello is blaring but I'm so lightheaded at this point this is feeling more like a dream.  The usher looks at our seats …says you are the top row.  I look up at the staggering steep steps - Chrissy and I lock eyes and I say - No F'ing Way.  I can not do one more step.

Oddly, I'm not discouraged -more like you did it. Goal 1. Goal 2. and kind of Goal 3.  I say let's just go back down, I saw some chairs outside the black curtains separating the venue from the walkways.  We can just sit and listen from out there.  So we slowly go down the steps…and at the bottom I look straight ahead and see the curtain on the left has the handicap sign.  And all the rules below it.  I read the "fraud" penalties and part of me visualizes this big mistake and I am being taken handcuffed out of Adele.  But the other part is walking straight forward.  I pull back the curtain, and there is a folding chair propped up.  This section has two "disabled" seats it appears plus one for their guest.  One an obese woman on the far left and the woman in a wheelchair the far right - where we entered hence the extra folding chair.  This is one of the "no steps" necessary spots.  I sit down - take in the last seconds of Hello.  Tears well in my eyes and I lean on the metal post next to me.  Chrissy is standing behind.  Then an usher comes from the other side of the metal posts and asks if I am allowed to be here…and through Adele belting out I say truthfully.  "I called, disabled was all booked.  I have a chronic illness and couldn't get here early.  I tried to get to my seats and almost passed out - and I promise you I will be lucky if I last for more than 4 songs." She looks at me - and kindness in her eyes says - okay.  
November 21, 2016
Chrissy and Me
The rest is a bit of a blur.  The song Remedy came on and it was too loud for my nerves to take.  So Christine and I went back out of the curtain.  I saw the Usher and tried to get her attention but she was dealing with someone with ticket problems and went back then to her post.  We hear Adele chatting away and I said to Chrissy mind if we go back in.  I take my seat and then the usher comes again, and my heart sinks and those handcuffs (melodramatic I know) come to mind.  And I said - I'm sorry I tried to catch you - and she said - no I wanted to let you know I talked to my supervisor it's all good - can you just move the folding chair to the opposite side so you aren't behind the wheel chair.  The gratitude and relief I felt I can't explain.  I was free…she sang one of my favorites - Water over the Bridge.  I soaked in ever moment of Adele yes - but more importantly being in the world.  In a place with thousands of people with thousands of their own issues and in this moment the kindness of an usher - the kindness of Christine and Vasil, my doctor, my friends that kept cheering me on, there wasn't one moment I took for granted.

This illness most of the time you don't feel like you are truly living.  You are existing until the next moment of relief.  And for an hour I was living.  It took a lot to get here.  It wasn't the same as heading out to dinner before, grabbing a drink, rather the necessary monitoring of myself to make sure I didn't put myself over the edge. I have learned it's always best to leave before I have to.  So I gave Chrissy the look - it was after 9pm - texted Vasil and we walked a few steps down and like Cinderella my car was waiting.  While we were leaving all the ushers at the exits said - you can't leave she has more than half the show left.  And I kindly said no this was perfect.  And then they kept persisting - not being able to reconcile this person who looked well leaving a sold out sought out concert.  So I finally said, I have a chronic illness, getting here was enough and everything else was perfect.  And I got a look of recognition.  Not understanding, but understanding this woman couldn't understand, she didn't understand but she got it.

Vasil had the biggest grin when we got into the car.  We got home, Chrissy took Sophie out brought me some ice cream and I collapsed wondering if that was all a big dream - or did that happen?  I tried to write yesterday but couldn't move.  And wanted to write while it was fresh.

I know how sad my cousins were to have had this big trip planned and the reality that it didn't happen the way it was suppose to was a gut punch.  I get it.  That is how I feel nearly every moment of every day.  Whether it was getting all dressed and then being too sick to make my niece's dance recital - especially since she has huge performance anxiety and I wasn't there to support her.  Missing every soccer game of my nephews.  Missing this amazing life laid out in front of me.  That is what it feels like every day - I do my best.  I made a promise to myself a number of years ago when it was obvious people felt guilty telling me where they have been - what they have been doing - I will do everything I can to encourage people to live loud, live boldly remember what matters.  I will never make someone feel bad about an opportunity they have and I can't do.  Joy is expansive - if I can have joy for their experience rather than sadness for mine - it helps me too.  I will say food is the exception.  Since food is life and it scares me that I can't eat so many things I do ask people from refraining from telling me about their meals.

 I have gotten good at missing all the things I use to love.  Maybe sometimes I make it look to easy. The reason I do is because most days I'm so sick that missing something is too far out of my mind. The other is coping, when I start to take in what use to be rather than what is my heart gets shattered in a million piecesWhen I'm my best self I remember I've had more experiences prior to getting sick than most have in a lifetime.  I am still one of the lucky ones.  But there are days that pill is hard to swallow.

When I attended Adele, all I felt was gratitude to my parents.  There is no way most CFS/ME patients could do what I did - because they don't have full time help, then a driver, and my parents give that so freely - they didn't care if I got half way there and needed to turn back.  That's not the point in my life right now.  The point is to way the risk and rewards and try to slice out these moments of living not existing.  It is bittersweet, when I had mentioned to Chrissy all of a sudden I felt pretty well, I said wow life was so much easier.  And being at the concert and knowing that was food for my soul for so many years - and this experience so different than when I was well was also hard to swallow.  But there was so much kindness sent my way - I would be a fool not to soak that in.  My best friend texted me the next morning - when I saw your photo I had tears in my eyes for you.  That is love.  I have an abundance of love.  I am desperately lonely here in Phoenix right now.  I miss my friends, my family but I can't dismiss the family I have created here.  Vasil, Christine, Ashley, my doctor, my psychiatrist….they see every day through the 4th wall and they root for every tiny achievement. Someday that is coming downstairs and others it is a glimmer of an old life. 

Adele you are truly one big blur of gold sequins.  But I was there.  I felt my cup vibrate, the crowd yell, the lights go up, your use of the word Fuck in casual conversation, putting on a goofy t-shirt over the sparkly dress.  I interacted with the usher.  I made it up the Everest of the steps.  And I put myself first- I wasn't embarrassed to say - yes I belong in this disabled section -and that is fine by me because I am here.  

Hello From the Outside
At Least I Can Say that I Tried

Friday, November 18, 2016

Nothing left to Do but Write

It is the fear.  I think fear has begun to run through my veins like an elixir that I cannot purge.  It's unpredictability of symptoms that just when you think you are steady a wave of nausea, diarrhea, light headedness, kind of feels like someone just slipped you a roofie at a rave.  The rave is the disorientation searing throughout your body and lying down even feels unsteady.  I hate that I go to fear; I think the physiology is the rush of adrenaline when your body has the sensation it is going to pass out - this surge then lingers and leaves me reaching for the nearest phone.  My lifeline has always been the phone.

November 3, 2016
Highest of highs bring lowest of lows
Just when you think you have turned a corner...
This week I have sat with this fear for going on 48 hours.  If anxiety is a wave not to be fought but to be surfed- this is a monster that refuses to let up.  Periods for woman with this disease are notoriously difficult, one more thing for the liver to process.  After my genetic testing revealed the double mutation to help detoxify estrogen among other drugs; interestingly the first drug when I was losing 30 lbs quickly was an antidepressant.  I went through 3 different ones half the smallest dose and still my brain felt foggy and I would often not be able to find my words.  Well bingo…there is a medical answer to that.  So now with my age, and peri-menopause rearing its welcome, it is one more thing on the proverbial plate that is getting heavier by the moment.

My parents left Phoenix on Monday.  Monday I had my first new attempt which was an hour and a half  IV.  Had the half hour drive home and collapsed.  Four hours later the insane cramping, weakness and drunk like feeling began.  It is Friday, I have cried more times in the last 4 days than the last 6 months.  I have reached out -knowing I'm upsetting those that I love with my absolute desperation that there seems no answers for.  My precious dog is beginning to show her age so I need to carry her up the steps.  The sun is shining in Phoenix and yet all I feel is the storm approaching and I have no cellar to crawl into.

I don't know what to do anymore.  I did try a new doctor who thought throwing a bunch of pre-cursors to hormones due to my low functioning adrenals would help…think we know the answer to that experiment.  I have discussed trying the anti viral and heavy hitting anti inflammatory drugs; but my history handling these meds hasn't been great.  Trying new things with a body that isn't acting by the rules is absolutely terrifying.  I see others that have gone to "the best" CFS doctors in the world and they are completely bedridden.

November 3rd I had 3 good hours.  Really fantastic, joyful hours.  People can't understand how that is possibly good enough…and that is because they have no idea the storm that could be on the other side.

Thanks to my friends and family that have answered my 3am phone call with calm words and no judgement.  I'm so tired.  Most days I don't have time to miss my old life; managing this new one is so complicated and exhausting.  But lately, mourning is all I seem to be doing.  I really liked my old self - and me and this new body aren't getting along very well…we have moved from mediation to full on nasty divorce.  I just am scared about who will win.

Tuesday, November 15, 2016

I will Grieve…In My Time not Yours

I've been reflecting a lot, like many, why the Presidential election results have taken me to my knees.  I've reflected on what were the true sins of Secretary Clinton that were dire enough that a vote for the other candidate was justified despite things he actually said and things he didn't really even say he would do.  History will be written about this, blame will be given but at the end of the day the result is the result.  Hillary Clinton will not be the first woman President of the United States - and that hurts.  I've come to realize my grief for her not winning has taken two paths.  The first - one that I believe many cling to; the absolute unpreparedness he showed during the debates and secondly repulsed by the fear he sold and the groups he bullied.  The second path is one much more personal and attached to my current state of health; the realization that I did feel connected and understood and was living vicariously over the last 18 months sharing this journey with her.   In fact longer than that since I voted for her in the primary against President Obama.  Being mostly bed and home bound I poured over media coverage, watched all eleven hours of the Benghazi hearing, read all I could.  The last 18 months I felt like this is it, this is going to happen, and while everything else in my life is so uncertain - I could sit in bed for the next 4 years and watch Madame Secretary's journey as Madame President.  Then the results started coming in and as Hillary Clinton's dream was shattered, the glass ceiling firmly intact,  so have been my own.

Public Allies 1995
First Lady Michelle Obama would later become a Chicago Board Member
My Path

The cognitive dissonance is the best that I have to explain Republican educated middle and upper class whites voting for Trump.  Choosing to excuse his speech because of a faux familiarity with his billionaire and celebrity status over the last 20 plus years.  Those also being a group that have for years and years and years had strong feelings that Hillary Clinton is a liar, untrustworthy, even some to go so far as a murderer combined gave rise to the ability to vote for her opponent despite the racist, homophobic, xenophobic, sexist and often bizarre words he would say.  He was correct, it appears he may have been able to "shoot someone on 5th Avenue and people would still vote for me." What does it take when the leading members of his own party can not say his name, no former Republican President thought he was ready for the task at hand, and all while giving slogans in place of policy.  I could understand those who this economy and direction of the world is leaving behind.  I could understand holding on to dear life when manufacturing that was the backbone for so many years for a good life now forces people to work longer, for less and often end their days with uncertainty and no pension.  I could understand those that don't see our place in the global world throwing a Hail Mary feeling what do they have to lose.  I could not understand the arguments from friends or family that are educated and financially stable to take such a gamble; when their own party wasn't willing to.

As I see more and more people getting frustrated at the vocal opposition to the President Elect and declaring don't you dare call me a racist these are the good deeds I do, I pause and the best explanation I have is that they or someone they love weren't viscerally offended by Trumps words.  Most of the people I know that are getting very angry with people not "letting go"of this loss are one of or a combination of the following; white, male, attractive female and financially stable.  Period end of story. And I realized that they have not been "hit" so to speak.  I wrote on my Facebook post when someone told me to "chill out" that the worst thing he said about white males were their "knick names"…"Little Marco (he falls in between) "Low Energy Bush" and "Lyin Ted".  The women he went after were much more personal and always went to looks…"That Face" for Carly Fiorina.  The most bullying was when he went after Ted Cruz's wife by posting that extremely unflattering picture of her and compared it to his super model wife.  Entrenching the stereotype that a woman's value is connected to her "beauty".

I am 44 now, living in a body that has betrayed me. Besides being frustrated with my changing body and lack of muscle tone due to this illness I have come to appreciate my looks for the most part.  But I can remember a time when I sobbed that I just had to get a nose job after a male classmate said I "looked like a witch"- and years and years later every time I looked in the mirror all I saw was my ugly nose.  I am at a point in my life that I understand where beauty radiates from, the difference between looking at a person in awe of their outward beauty they were blessed with and separating that from defining who they are as human beings.  So while the attacks on women's appearances I found offensive- they did not shape my world view of myself.  I wonder what do little girls think that heard this, teens and those finding their way…our President Elect has certainly made it clear what female beauty means to him.

When he railed against Mexican Immigrants and then declared his judge couldn't be fair due to his Mexican heritage I sympathized, knew it was wrong but wasn't hit in the gut.  Our democracy is built around justice being blind…did he really just say that?  When he proposed a ban on Muslims, in AMERICA a ban on religion…this rhetoric frightened me from a historical perspective - how have we lost our way that our country was founded on the separation of church and state, a refuge for religious freedom.  However, since my religion doesn't define me by color or creed I didn't feel it the same as a woman wearing a Hijab.  I didn't need to fear walking down the street.  When he insulted John McCain as not being a hero…well that was so insane I laughed it off.  I literally laughed it off.  But what about our troops that could be captured, what about John McCain, I doubt they laughed it off - it is and was their reality.  All while this man lied about having a high draft number and instead had a bunion.  He chose to go after a Gold Star mother inferring she was quiet possibly because of her religion she wasn't permitted to speak.  A claim that mother then felt compelled to address and say no her grief not her religion had her speechless.  Then in comparison when pressed by a journalist of his biggest sacrifice; he paused and reflected on it  being a busy business man. Again, these statements were so beyond my world view I didn't feel his words in my bones.  I found them hitting me at a distance; like watching movie.

And then it happened, I had begun to get "hit".  First, The Access Hollywood bus tape.  I find it to be a cruel irony that NBC found Billy Bush needed to be fired, while America chose to hire.  I listened to those words over and over and I thought, this country has been working and working to understand college and acquaintance rape and yet "locker room" talk became the cognitive dissonance applied.  I listened and what I heard was what many are finally understanding rape, sexual assault is about Power not Sex. If we ever didn't understand that - now was our chance.  I think it is important to read the entire transcript.  The power is twice, going after a married woman…seems that was as important as her beauty.  And doing it because he is a star.  Let us not forget this was a man well past puberty, past middle age and was not in a locker room.

“I moved on her, and I failed. I’ll admit it,” Trump is heard saying. It was unclear when the events he was describing took place. The tape was recorded several months after he married his third wife, Melania.
“Whoa,” another voice said.
“I did try and fuck her. She was married,” Trump says.
Trump continues: “And I moved on her very heavily. In fact, I took her out furniture shopping. She wanted to get some furniture. I said, ‘I’ll show you where they have some nice furniture.’”
I moved on her like a bitch, but I couldn’t get there. And she was married,” Trump says. “Then all of a sudden I see her, she’s now got the big phony tits and everything. She’s totally changed her look.” [ i would personally argue this statement is easy to inferyeah I lost but she isn't attractive anymore so doesn't matter, he needed to insult her after she turned him down…]
At that point in the audio, Trump and Bush appear to notice Arianne Zucker, the actress who is waiting to escort them into the soap-opera set.
“Your girl’s hot as shit, in the purple,” says Bush, who’s now a co-host of NBC’s “Today” show.
“Whoa!” Trump says. “Whoa!”
“I’ve got to use some Tic Tacs, just in case I start kissing her,” Trump says. “You know I’m automatically attracted to beautiful — I just start kissing them. It’s like a magnet. Just kiss. I don’t even wait.”
And when you’re a star, they let you do it,” Trump says. “You can do anything.”
“Whatever you want,” says another voice, apparently Bush’s.
Grab them by the pussy,” Trump says. “You can do anything.
My friends and I talked at length after the Stanford student rape case - that unfortunately seemed to get more attention and petitions than these statements by the President Elect.  We discussed how fortunate we were growing up with boys that were men before their time.  My guy friends, are the ones that would have been pulling the man off, not the other way around.  These statements were the first that made me viscerally feel like throwing up, that made me disgusted that any man or woman could excuse this as "locker talk".  But that was the spin and it appeared to work.  And of course they were given the gift of President Clinton's past to some how now Hillary was equally at fault for the discretions/sins of her husband.  Bingo - they pivoted.  
The second time was the mocking of the disabled man.  Oddly though it didn't happen right away.  It happened after the election was over.  When I first saw that boorish behavior fitting of a sad, insecure kindergartener I again just shook my head.  But for some reason when Secretary Clinton lost, and my helplessness set in my first thought was the vision of the President Elect mocking that man; and I thought to myself he is mocking you too.  I hated that thought, because it forced me to again force the painful reality that my life is not independent anymore.  I depend on people to do all of my day to day cooking, cleaning, grocery shopping and the list goes on.  People may see a photo of me and think "she doesn't' look sick" and have no idea that was a moment in time and everything that it took to prepare for and the inevitable days in bed it took to recover.  Secretary Clinton's shocking loss made me grieve my loss of independence in a way I hadn't before.  I took stock of my lifetime of achievements prior to this illness and realized we were on some level on similar trajectories.  Despite not coming from a traditional religious family, I lived those words, "Do all the good you can, for as many as you can, for as long as you can."

I had early in life, second grade actually, remember first learning about Martin Luther King, and the atrocities of our countries past.  I followed a path of service and had every intention after Medical School of returning to the underserved area in Milwaukee that showed me the impacts of health and poverty.  I had hopes to going to MU night Law School… I had a plan and the loss of Secretary Clinton stung me in the heart, I did see myself in her.  I did look past her faults, because she is human and I saw that none of these "sins" were done at the expense of country.  And I reflected that if I was well what would I be doing now?  Would I switch paths and begin to get involved in politics?  I am young enough - but not able in body or mind anymore.  I realized that when President elect mocked that person for something they had no control over - I felt that in every cell of my body.  Whether you lose your body to illness, accident or born with disabilities no matter how high your self esteem so many things are taken from you.  For me, the daily struggle is to not feel less than, because no matter what anyone says - it is the painful truth.  I am less than my former self.  Not in spirit, not in grit, not in compassion - but in the ability to act - I am less than.  And in that loss, when I at first thought of seeing him mock that man - I felt detached and disgusted.  In the moment after the loss I felt rage and disdain.

So I continue to implore those kind hearted individuals that keep asking us to not worry, give him a chance, concentrate on policy.  I ask you to please humble yourself and sit with the question did his cruel viscous words hit YOU.  Not "your gay friend" or "your black friend" or "I have no problem with Muslims…"did they hurt YOU personally.  Did they make YOU feel less than?  The same people that are asking me to move on often are the ones that despite 7 congressional hearings refuse to accept the answer that Benghazi was not a criminal act of Secretary Clinton's.  That after a FBI investigation, her apology continue to be enraged over her emails.  That in all those emails, 3 had a body of the letter "C" classified - not a header.  That by all accounts all they found is that she was in words of Bill Maher a "boring political policy nerd." They still play the "I could have stayed home and baked cookies…" as a rally against stay at home mother's rather than her for a moment not being politically correct and instead say - lay off.  I went to Law School and I want to work.  I ask you to stop forgetting that she was a Rodham before a Clinton and was the first student ever to give a commencement address at Wesley.  I ask you to remember she went to Law school at a time when there were 3 woman in her class and she was chastised for taking the space of a man who could then be drafted.  I ask you to ask yourself what part did sexism play in her threading a line constantly between emotional and stoic.  I ask you to stop pretending she is "different" than other women.  To pretend sexism didn't play a role when her pneumonia seemed as big as a headline as Trump not releasing tax returns is a blind eye to double standards she has lived with for years.

Allow me to have my grief.  If Secretary Clinton; inarguably the most qualified person to run for the office of the President, had lost to John Kasich, Jeb Bush, Marco Rubio….the list goes long - this loss would still sting but I wouldn't be fearful of its long term consequences.  Let me grieve that on a national debate stage when a woman was schooling her opponent on policy he looked into the camera and said "what a nasty woman."  Let me grieve for the idea that our country voted for the idea whether the President elect acts or not the suggestion we screen for religion.  I felt a bit like Cinderella, not only did she lose her mother but was replaced by an evil manipulating step-mother.  That is who won, that in my greatest of hopes will not be who leads.

However, respectfully let me grieve for myself.  For the fact that I am not technically, not kind of but actually disabled…so my routes to action are more limited than many of you - I have a computer screen and my words.  I have hope I will be someday be well again.  I have hope that I can find a trajectory that will have as much meaning as my old path I had worked towards - but I often need to choose.  I choose my energy for my friends, my family and my work at healing.  It is on one a hand a contrary life to the one I had lead, recently a friend who I don't see often when we exchanged messages said to me the following:

"I think of you so often but don't vocalize how much I worry about you and grieve for the life you deserve"

I thought so much of that statement.  What is the life we deserve?  The best I can come up with is we deserve to live our truth.  This election has taught me much.  It has taught me the words my father has said from the moment I can remember, "life is not fair."  It has taught me that I am blessedly at a point in my life where respect is more important to me than being liked.

The phrase "Sticks and Stones may break my bones, but words will never harm me." Kept coming to mind and I thought - could we be more wrong?  And so I did a bit of research and found the historical context of the phrase is quite relevant.
The earliest citation of it that [ I ]can find is from an American periodical with a largely black audience, The Christian Recorder, March 1862:
Remember the old adage, 'Sticks and stones will break my bones, but words will never harm me'. True courage consists in doing what is right, despite the jeers and sneers of our companions.

Tuesday, September 27, 2016

Carry This Canary Home

This has been a very long day.  And I want to thank my family for always stepping up.  It is hard to be this isolated and people say what can I do??? And you tell them and often all you feel is crickets.  Or you look at friends with this illness and their friends rallying around changing profile pics - showing their shoes, reaching out saying It's Okay - We Will Carry You.  I am tired.  There are a few hours left to make a mark on getting #MillionsMissing Trending.  I'm embarrassed to do this - don't really like doing this and I said earlier I do it for those that missed their 20's that I was gifted.  I do it for those fighting so hard for change.  I do it for those that can't move, can't speak, and don't have the resources I have.  I don't even know if I do it hoping a big cure will come - maybe it will - maybe it won't but at the end of the day I can rest knowing I did my best.
This was my last post for the night on FB - the only social media I am on.

Not going to lie. I have been a bit discouraged by my efforts today for#MillionsMissing. Believe me I am TIRED of this too. But the last two days I have suffered…really really suffered bc I tried to do too much on Saturday. And I Was TERRIFIED…did I really F this up…will this be a week, a month, will this headache, nausea, body pain, body paralysis, sound intolerance, food intolerance, night sweats, end…will it ever end. So I googled twitter and googled instagram and I have been lifted up. Lifted up by others…I am not asking a lot …I GIVE everything I have to SHOW up for OTHERS. I am asking something very simple. For ONE day to change a profile picture. For ONE day to put your shoes out…it took me over an hour to get the energy to walk to my front door to do this. We have a few hours left. See who is with me. Bless you all who showed up. John McCain on Twitter. 2,401 on Instagram. Bless you all. The point is to TREND…to have people STAND WITH US…for ONE DAY.


Today is the second #MillionsMissing day of protest and awareness for CFS/ME.  My hands are trembling as I write this post.  As I said to a sufferer's mother last night -I am just too tired to be both advocate and patient.  So I am going to choose one.  Advocate for others when I can't feel I have the energy to do it for myself.  Isn't that often the case…we can push for others when we can not do for ourselves.  How can you help…you can go to and they will walk you through.

And you can put your shoes outside, take a photo with #MillionsMissing and post to any or all social media accounts you have.  If I have ever missed something of yours - I never wanted to.

I miss you.  I miss me.  I miss everything it meant to live in a body that was healthy - Freedom.

Thursday, August 25, 2016

Curled Up

I watch Sophie curl up as tight as she can at the end of the bed.  I know how she feels.  I would like to curl up and close my eyes and ruby slipper it back in time.  I feel frozen much of the time.  I think the majority of my days are spent waiting.  Waiting to feel well enough and fill in the blank.  Waiting to feel up to eating.  Waiting to feel up to taking a shower.  Waiting for the gnawing cellular discomfort to pass.  Waiting until like a wave crashing over me and takes this feeling away.

This will pass.  Sometimes in an hour, sometimes in a few often in a week.  But it will pass and then some relief comes with no warning and no explanation.  Last night it was in the form of Kopp's custard.     All day from the moment I woke up I waited.  I hydrated.  I took supplements and prescriptions.  I did inhalers and relaxation breathing.  I attempted a movie, a distracting text and phone call.  I waited lying silently curled up and just kept thinking it will pass.  It will pass you can not force it - but it will; you must believe it will.  It will pass if even for a moment.

I had my summer helper arrive at 5 pm to fix me some dinner.  I sat up and stared at the rice and chicken, salad and asparagus.  The same meal I've stared at a hundred times before and I waited.  Start with one bite.  One bite and the next may come more easily.  Slowly making my way thru with the quiet of the room I took another.  Twenty minutes later and a quarter of the way thru it came to me - custard.  I need something dense - so Erin left for chocolate and vanilla and I encouraged myself to take another bite.

When she returned it had been nearly 40 minutes since the plate had been put in front of me and I had eaten a bit over half.  And then began eating a spoonful of custard and my whole body felt like it screamed thank you! We needed calories, density, easy.  Nothing to chew and another fifteen minutes went by and at 6:45pm after an entire day of waiting it all melted away.

I got up and finally cleared all the magazines and catalogs off my dining room table - a task that I didn't want anyone else to do but had alluded my energy for the last week.  I grabbed the frames from the closet in the playroom and my helper put some photos I had ordered two weeks prior into them…the frames that have been in the closet for 2 years.  I threw the cover for Sophie's pillow and a bath rug into the dryer.  And then it started to slip away, and my bedroom called once again.

That is what a day looks like.  It is difficult for me to have people in the house while they are doing - it looks like I am doing nothing - but the nothing is something - it's strategy, it's talking myself off a ledge and it's waiting.  Waiting for a moment to see if it arrives.  

A few nights prior - Monday I was able with my mom to take my friend's daughter back to school shopping.  Start to finish with driving was less than 2 hours.  But I was present - and able.  Not able to switch stores when I realized Nordstom Teen department in Milwaukee is nothing like it is in Scottsdale.  Not well enough to go to the cafe and order a drink or dessert.  Not well enough to drive her myself.  Not well enough to have her come over and maybe watch a movie or spend the night.  But well enough to get the task at hand completed and be present.  That is the thing nothing is like before, nothing isn't strategized or manipulated to appear different than it is - but it must be good enough.

I think about Sophie curled up at the end of my bed or on her pillow next to my pillow and think she isn't thinking is this good enough.  Yet, it is all I need.  So maybe I can learn a few lessons that good enough is often all any of us need.

Tuesday, August 9, 2016


I found this article under "rare diseases" which is probably problem number one…however the article itself is very informative on how the United States really re-named Myalgic Encephalomyelitis to Chronic Fatigue and put all the emphasis on the "fatigue" where all of us living with this disease already know the Fatigue is like the tiniest piece of the puzzle….

Rare Diseases Article…really Rare???

I know for myself yes the fatigue aka mind numbing exhaustion is always a re-bound effect…however the reactive airway disease, constant sore throat, difficult digestion issues, insane food allergies, chronic pancreas pain that waxes and wains, headache with the slightest temperature increase, the sensitivity to smells, irritation with noises….the list goes on and on.

Every day I just can't believe I can not find a solution to get out of this situation.  Most of all it steals living…you have moved into surviving and fake living with the utmost dedication.  Everything is managed and highly controlled and the person you once were is a distant memory to yourself.

When you have an illness there is this desire for our society to remind you then you must "carpe diem" - but a unrelenting chronic illness the only way to seize a day is to find a moment and to work really hard to save up for that moment.

What I miss most lately is eating.  I just got the invitation for my friend's daughter's Bat Mitzvah and I thought mother fucker I am going to miss out on all that good food.  I'm not Jewish but have managed to amass a large number of Jewish friends - and I think in part for my ability to devour brisket and kugel and my happy indulgence of the Jewish mother feeding me.

Unless you have food allergies you can't imagine when food now has become a war zone of land mines.  The basic necessity of life has betrayed me…how to you begin to fix that?

Saturday, March 26, 2016


there is a selfishness in being ill and i hate it.  it is the place that scares me; the ability and desire to detach from healthy people and their lives; it is at times just too painful to be the cheerleading observer taking a perpetual back seat to the living.  it is self preservation and it is such a vast departure from my life before that it scares me in my ability to be content in this place.  this place to shut down, close the blinds and have nothing left for the interest in what everyone around me is doing - i simply don't have enough energy for anyone but myself. a myself that is a polar opposite of the person i use to be.  and i have learned to forgive this new person realizing it is a matter of survival but it doesn't mean i have to like this person very much…however i am learning to admire her. and for now that is enough.

Tuesday, March 1, 2016

Yearning to Be Free

For years I had been saying my dog is 7 or 8…when in fact she turns 13 this year.  That seems to be what I have done with this illness, averaged down…when in reality it started over 12 years ago.  Sick every day not tired.  Sick day after day, week after week, year after year where they all blend together.  Tired, tired I could deal with, sick…sick takes away hopes, dreams and living in the world.  I miss the world.

This too shall pass.  Perhaps not the sick, but the hopelessness of the sick, it is the ebb and flow of this disease similar to the seasons in the desert to the visitor they are hidden but those that live here see and feel the shift.  The tiny glimmers of hope that remind you that you can do this one more moment until that moment becomes and hour and that hour becomes a day and soon you have strung together a week that you have no idea how and you get up and do it again.  For time is not your friend as you realize you lost most of your prime, but perhaps time will yield answers.

Valentines weekend.  My favorite holiday.  For 3 glorious days things lifted, was I normal healthy.  Not even close, but there was a shift where every moment wasn't just so darn difficult.  And then poof it disappeared and the days since longing for the mysterious cupid to sting it's arrow of hope feels more like a mirage in this desert than a reality.

I am trying my best and grateful for the help I have.  Yet how long can one survive in purgatory?  Think forever unfortunately.  What scares me the most is that I am better than many - but for how long?

New Colossus , Emma Lazarus
Not like the brazen giant of Greek fame,
With conquering limbs astride from land to land;
Here at our sea-washed, sunset gates shall stand
A mighty woman with a torch, whose flame
Is the imprisoned lightning, and her name
Mother of Exiles. From her beacon-hand
Glows world-wide welcome; her mild eyes command
The air-bridged harbor that twin cities frame.
"Keep, ancient lands, your storied pomp!" cries she
With silent lips. "Give me your tired, your poor,
Your huddled masses yearning to breathe free,
The wretched refuse of your teeming shore.
Send these, the homeless, tempest-tossed to me,
I lift my lamp beside the golden door!"

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