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 www.millionsmissing.org 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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