Tuesday, September 15, 2015


I was watching an old friend on TV…the friend being a show..Felicity…and it made me think of all the things I miss being sick…and then this amazing thought came to mind…everything I miss is because of everything I have had..and how in the world could I ever being anything but joyous from missing so much…Nice, France…we will meet again ..

Sunday, August 16, 2015

I'm not Planning...

I am not planning on being sick forever.  A thought so dangerous it's the equivalent to taking on Everest without Oxygen or a Sherpa.  A thought that came into my head without warning and I expelled it like an avalanche smothering it's very existence back to the recesses of my mind.  This is the thought that can decimate you.

This illness has a way of punishing those that begin to think that way…just try me, take me on and see what I will do to you.  You think you can walk around like a healthy person or someone fighting a different illness that gets rewarded for pushing through pain, pushing through fatigue, pushing through side effects of medications.  Oh never mind my sweetie…you just try me and see who will win.  Remember me?  I am the one that has evaded logic, evaded interest, evaded federal funding, evaded reason..I am the puppeteer pulling your strings so just give it a try and see how far you get.  I will have you bedridden, motionless, thoughtless, brain hurting, stomach wrenching, down so fast you won't know what hit you again.  So what was that thought you were having…You are not planning on being sick forever…well get in line honey I've got nothing but time.

Monday, March 30, 2015

Sonicare and The Hurricane.

7pm. Seven PM on Sunday night was when the switch finally went off and a bit of freedom was restored.  I don't know why, or what I did, sometimes I feel it matters very little - though I know I am mistaken and that is just the wicked doubt that seeps like another virus running through my veins.  This switch was more like a dimmer tonight.  It didn't shine brightly and enlighten the room or my surroundings, it was more of a quiet break.  Like when the sun slowly peaks through the winter grey clouds showing the world it still exists, it hasn't forgotten about you, you can see it but you can't feel it's warmth.  The reminder that it doesn't fail to exist just because you haven't felt it's rays.

It started without a thought like a minor reflex and I sat up and moved from the bed to my floor.  Now this doesn't sound so appealing, but the solid surface of the ground with my legs resting on the ottoman above felt like a safe place.  My back was finally supported, my feet above my head, my body being supported by the ground and sinking in and I realized how much in fact it ached.  The last four days while lying in bed it has felt like an invisible vice has been wrapped around me.  Pressure from above sinking into me.  The bed below barely holding me.  But on my back, my eyes closed I felt for a second I was back to my first yoga class.  Lying on the carpeted library floor of a suburban high school.  The best extra credits I ever took for a summer.  I can still imagine what that room smelled like.  That was a summer of awakening.  I had my health back after my tonsils removed, transferred back home to UW-Milwaukee which was a much better fit and one of my first classes I added to catch up from the semester lost introduced me to Linda.  She was my instructor for many years, etherial and grounded. From the Library to the 3rd Ward Loft she was my first and best instructor  I ever had.  Back to reality. It's 2015, on my bedroom floor and I began to breathe and put arms over head and like a coil began to unwind.

The last few days breathing was tiresome.  Eating exhausting.  Sleeping a hopeful elixir but that is not how it works.  You just lie there and stare.  People always think this illness is so graceful, and in my mind I try to imagine it that way.  I often try and pretend I am Lady Mary at Downton Abbey who couldn't be bothered with the menial tasks of day to day life.  Having someone do these tiresome chores beneath her..In this fantasy I admit that this illness does suit me if I had to choose…then of course I didn't get to chose.  I admit that if I had to put my hand into a bucket and pull out blindness, cancer or dementia oh my list goes on and on how would I fair?  This little exercise brings me comfort as I go through a laundry list of what I could not handle and peace in that this is the one I won.

I've moved to sitting upright.  Cross legged with my back supported by the ottoman that held my calves.  I stretch my head and slowly rotate my neck in little half circles and I breathe.  How far do I go?  The light has gotten a bit brighter, the clouds have begun to part.  Do I dare?  Do I dare stand and stretch upright?  I do and I wonder could I have done this at 2 pm? Could I have done this yesterday?  The day before or before that???  Am I lazy and didn't try hard enough?  That nasty little doubt coming from the shadows and I remind myself to stay in this moment right now - this moment of stretching to  the the left - expanding from the ribcage not to crush it inward as Linda taught me many years ago her voice a calming whisper in my ear.  She always taught us that yoga was done anywhere, anytime not bound by a class.  It was the awareness of what you were doing at any given time and place.  When she was a mother of three young children she use to say yoga was emptying the dishwasher with a mindful awareness and an outstretched arm.  Here I am, my feet rooted to my bedroom carpet as my hands reach to the sky.  I am in this moment, and watching this moment wondering how can this be this hard one minute and this easy right now?

I stretched and I planked and I breathed it in.  Mindful of my drifting thoughts wondering again why now?   Then patiently directing myself to drink now in because we don't know when it will come again.  The sun was setting and I sat on my upstairs patio and gazed at the trees.  The gray sky with bright flashes of pink.  Listened to a couple walk on the path.  Notice a light on in the distant hotel with a couple in their resort bathrobes taking in the same view as me.  As I was sitting comfortably on one chair with my legs on the opposite I could finally find the words for the question that has eluded me…What does it feel like?  This past 4 days it has felt like I am carrying around my body.  The 136lbs do not serve me or energize me or carry me…I am carrying them.  That is how it feels to get out of bed, to shower, to get dressed to eat to talk …It feels like this separation and I am carrying myself around a bag of muscles and bones heaped over your shoulder.  Where every movement, every breathe is an act of energy that adrenaline assists all the while you are slowly decaying inside.  That is why you are so heavy you see yourself in every action you take.  You bargain and bet and wager what you can do - with money you don't have to spare.  You are treading water while the ocean is swallowing you but most of all you are carrying yourself and you are too heavy.

I moved inside and looked at myself in the mirror.  Looked through myself and saw a bit of life back in my eyes.  My complexion suddenly clear and smooth.  I began with the yellow Oral B toothbrush and began a cursory brushing of my teeth.  When it's really bad every time I brush my teeth I have a memory of my grandmother.   I remember sitting on the floor of their bedroom while she would be getting ready for the evening in the attached bathroom.  I would notice the effort it took to brush her teeth when she was really ill but trying to hide exactly how sick she felt.  I would chat with her and she would brush her teeth with this sense of duty and habit.  I see myself in her when I am too tired but force myself out of bed - the toothpaste hastily on the bristles, the quick deliberate motions that require full concentration but little detail.  It makes me sad, it always makes me sad.  But not tonight…

I was playing "The Hurricane" on my iPhone by Bob Dylan - playing time 8 minutes and 33 seconds.  I had it on from a link from Raffale Sollecito's FB page he posted it after his conviction was overturned for the murder of Meredith Kercher.  I've always related to  wrongfully imprisoned people long before this illness; and now have found in some way a bizarre kindred spirit to those souls.  It's so hard to prove a negative.  That is what this illness is and was so long for so many afflicted, trying to prove a mystery.  So the Hurricane is playing in the background and I had the courage to grab the Sonicare.  And I found myself gazing into the mirror with a Mona Lisa smile.  I was at my sink standing after some yoga poses and sitting on the porch.  I was mindful of brushing my teeth and moved from a manual toothbrush, to the hum of the Sonicare to the floss to a few swishes of Listerine and back to a final brush.  The song was finishing as I reached for the Dove soap and then took my Clarisonic and washed my face with the care of an esthetician.  When it's two minute timer was completed I had dried my hands and opened my glass jar I have filled with baking soda and put some on my hand and washed my face again.  When I patted my face dry and slowly applied lotion I again looked in the mirror at awe that these tiny take for granted moments could in the moment bring me such joy.  These actions that most do on a daily basis with the perfunctory motions on their way somewhere else…this was my somewhere else.  I was not going anywhere- these acts done with ease rather than effort was my journey and destination and in this moment it was enough.  I felt free.

Sunday, October 19, 2014

Life Before and Life After



I am getting boxes ready for my car to ship to Phoenix and went to the basement and found this plethora of photos.  In the box was also a few journal pages from the time I spent 6 weeks in Nice, France on an exchange program.  Here are a few excerpts from that journal.  Our plane from Nice to Paris had major technical issues a story much more deserving of a clear head not my current CFS brain fog…Heather Kaufmann is in the dear friend I met, which was funny because I was "old" 27 on the trip, she was 19.  I had found the exchange while taken pre-med prerequiisties at Mt. Mary college, it was through Hofstra University.  So I didn't know anyone - everyone else was in college French at Hofstra…I met them all in NYC…But my long winded point was I have said many times I never took my pre CFS life for granted - and it was gratifying to see it in print.  I have so many emotions looking at these old photos, earlier in the day prior to finding them was filled with grief.  And oddly after finding this landline of days past was just gratitude and almost proof of a life well lived before this illness. Only those with this illness will understand what it feels like to be constantly questioned of your severity, your trying hard enough, the doubt…

Be Happy with your eyes open
Love with a pure heart
Cry with all your tears
Be angry for a reason
Never Deny an Emotion
But control it rather than it control you
Remember Yesterday, but don't re-live it
Live today -
13 Janvier 1998

"I adore Heather, so excited about the people I have met on this trip.  Heather said to me on the bus, you have a terrific life, and I said thank you I really do.  She said how nice it was to hear someone say that they realized how great they had it…" 12 Janvier 1998

Approximately 10 days later…Taken waiting for flight from Nice to Paris…Back story, Heather had lost her mother, in those uncertain moments I was able to be calm and at peace.  I guess all these years later it has a been a nice karmic gift all those who helped me when I had trouble flying.

"Tonight I held the hand of my life, It was someone I met 3 weeks ago.
But as I held her hand I held my life."
From my Journal
ps. I have lost touch with Heather, tried FB searches…so anyone out there that may see this please contact me…would love to re-connect.

Saturday, September 6, 2014

Link to Living w Auto-immune Illness

 Thanks to Gail from the Blog My World for Sharing the article from the New Yorker
Up North ….My World Blog

From the NEW YORKER…Living with an auto-immune illness…extremely informative

Saturday, August 30, 2014

What does it feel like…Long answer read the post..Short answer the Salmon


This summer I had someone ask me the most thoughtful question I have encountered with this illness, "What does it feel like."  That question felt similar to when someone asks you what is you favorite book or movie and your mind just goes blank.  The question has stayed with me all summer and I still don't have adequate words to describe what it feels like to live with CFS/ME.  The first word that comes to mind is disbelief.  Doubt is a powerful thought and when initially misdiagnosed or told with absolute certainty that you are not ill because you look well and the basic blood panels are normal it is a crippling feeling.  Thankfully for the internet all of us sequestered by this illness have found a platform and you begin reading story after story after story and you can't believe you are not alone.  However, there is not a morning I have woken up and still felt lingering doubt, how is this possible?

What it feels like is the opposite of well. When you are well and get an acute illness you fight through have your highs and lows and come back out on the other side.  Normal becomes sick and you fight through every day to cope with the most basic of tasks and then out of the blue sometimes you are blessed with a day where you feel normal.  You are not consciously planning out and bargaining with every moment of the day, things flow without constant thought process or internal dialogue cheering you on, and then poof that disappears and you are right back where you started.  It feels like you are the salmon and life is a constant battle of swimming upstream.  Beaten and thrown around and just when you are getting there a Brown Bear is waiting to grab you and you hope you can win.

Lonely, it feels tremendously lonely.  It has hard for friends and family because the way you use to spend time together and do things together have completely been altered.  Despite your best efforts you feel like you are constantly disappointing someone, and the pressure to be well despite it being a chronic illness that right now besides no cure has no understanding of cause is draining.  I get alternative treatments and feel that people are all anxiously awaiting as I am this whole thing to be gone, but that is not how it works.  I am blessed not to be bedridden for months at a time.  I am blessed that I can still drive when I'm up for it.  I am blessed that I have good days, for many many this is not the case.  So are my treatments working short answer - Yes.  Are they a cure, short answer No.  I have a complicated neuro-endocrine-immune disorder that currently has no cure, so if I am out of the house and upright…that is progress.

A list of my "medical" issues is long and boring and ever changing.  The most debilitating would be that I haven't eaten at a restaurant in 2 years d/t/ food allergies that range from carrots, potatoes, celery, peas, avocados, most fruits, legumes…..no I am not Gluten intolerant, Lactose intolerant…it appears I am food intolerant in general.  What happens, my lips itch, my face itches, and the worst my lungs spasm into an asthma attack.  Again DOUBT…how is this even possible.  I have for the past two years eaten a rotation of the same exact things over and over and over and over.  I have given up enjoying food or caring about food and one more cooking show I may toss something at the TV.

It feels surreal.  It feels like a body that has completely forgotten how to be well and ill is normal and healthy is becoming a more distant and distant memory.  It's disabling so the amount of help I need to get through a day is staggering.  It seems to those around me that I need more help, when it really is that I am no longer living with someone that took care of all the necessities…so now it's expensive and invasive.  People in and out of your home at all times, privacy something that you have come to add to the list of losses.  I am so ever grateful for all the help volunteered and that we can currently afford my other full time care helpers…but it is overwhelming.  I think of all the other things that money could do, college funds for my nieces and nephew, savings, security and the what if this lasts even longer…what if I can never work again…what if I don't figure out how to create a career when every day is Russian Roulette.

Grateful.  Finally and the end of the day no matter how bad it has been, and this past two weeks I can officially declare rock bottom I am grateful that I am not in pain, that I am not vomiting (because it is one of my biggest phobias in life), that I am financially okay, that I have a beautiful  house, that the ones I love are well, that I have a handful of friends that have stepped up and get it, and I have learned how to let go of those who haven't without bitterness or anger, that my beloved Sophie is still healthy.  My list of gratitude often wins but it takes tremendous effort and discipline that is behind the scenes to get to that place that most don't understand.  It takes tremendous self reflection to realize your "carpe diem" is a day where you left the house for less than an hour, or made your own breakfast or did your own laundry.  I think this "Carpe Diem" attitude that acute and terminal illnesses have taken on with a frenzy is very difficult for those of us living in a chronic state of stasis…we can't rally and get out there..we Carpe Diem very differently and it is so quiet that it goes unnoticed.

And that leads me to the final stage of how it feels…it often feels we are invisible living in a limbo land with everyone waiting for us to get better.  A month ago I had a full blown break down with a close friend and it was the first time in a long time I felt heard.  And the short story and the end she said the most kind and loving thing to me…"We need to do better."  This was the greatest gift someone could give me and my God has she done better, and all that meant was a few texts out of the blue, a phone call once a week or every other, acknowledging how small my world has gotten and how difficult that adjustment has been.  So if someone reading this is wondering how you could help…it's really simple…the real life mail b/c sometimes the biggest outing of my day is heading to the mailbox, a text, and I'm not asking for anyone to ask how I'm doing…I am yearning to know how you are. Bitch about your day, your job, your annoying husband or wife.  Brag about your promotion or your fabulous vacation…FaceTime me when you are out in the world…does it make me a bit sad, well of course I'm human…but at the end of the day I just want to be back in the game even if it is from the inside looking out.

I guess it feels like you have been taken out of the game, put on the sidelines and keep yelling at the coach to please put me in….and no one hears you.

A special thanks to Heidi Ike Goold for asking the question…for Renee Haley for being better than I could ever ask for it brought me tears of joy…to my parents and family which this is as hard on them as it is me…and my inner circle who know who they are and never let me down.

Thursday, December 19, 2013

Going Dark...

Last Rose Standing

The past month there has been a flurry of activity in the ME/CFS world with two documentaries gaining much momentum and press.  I was touched and appreciate all the FB shares, donations, and anyone who took the time to understand this quite misunderstood illness.  On the flip side I was surprised to find myself quite depressed and overwhelmed by the entire experience.  First, it forced me again to glimpse into the lives of so many individuals that are bound by this thread of uncertainty and pain.  It showed me once again that I am not crazy and I am not alone, however it meant again I am with a group that I would prefer to be outside looking in rather than the other way around.  It also made me feel quite inadequate, how are others making such a contribution when I feel that mine is so limited?  It forced me to look at myself and wonder what role did I play in not always having the emotional support I need by being quiet and silent, stoic and dismissive?  Have I become someone resigned to dismiss themselves?  And so with all those questions flurrying through a tired body and tired brain I have found the desire to go dark.  To withdraw and go within, like a turtle retreating to it's shell or a bear taking a long winter nap, I have found I need to be still and not worry about what is being accomplished, that I am enough yet I need to take some time to feel at peace with that statement.

I talked to my doctor the other day about how this illness has really taken all of my assets all the things I gained self worth from I feel have been stripped.  I have always been an extravert, I crave other people's experiences and being a part of them.  Now all I do is watch.  I feel a true part of very little.  At times I feel I am more focused on other's lives because, let's face it I have the time and it becomes the only way I even feel valuable.  I don't know if one can truly understand the isolation of this illness.  It's a harsh reality but there is no way to sugar coat that at times it feels as if all the little pieces that make you who you are begin to fall away and the puzzle that put you together is filled with holes.

Last month I went to the third floor of Nordstrom's where the Cafe is and I found my old table.  My favorite spot where to the right you can see out the window and the left see people walking in, and I just thought where did it all go?  I felt so happy to just be there, even though that is all I had done got there and sat.  I just sat with my thoughts and my bottle of water and coke in my purse and enjoyed what use to be.  I thought how this use to be one of my many "places" where I enjoyed spending time.  Now my "places" are limited and I didn't realize how deeply I ached for a simple trip to the mall where I use to eat the chicken pot pie and get a cookie, now none of which I can touch.  I sat and wondered will the ease of daily rituals ever be my life again?  And if not, just being here, knowing so many suffering with this illness could not accomplish this...

Last week I got quite ill again, and I really under-reacted to a serious condition.  I guess I have been so use to feeling overwhelmed and sick I just slipped away or didn't care.  On the second night after things got back in control I was in bed and I was so still.  Inwardly so still and I took inventory.  I thought to myself if I don't wake up tomorrow I could be happy.  I could be happy that I have left very little unsaid, left very few if any enemies, and I am not in pain, I am quiet.  There is a stillness to an acute illness where everything shuts down and you have nothing, not an atom of energy for anything else except the necessities.  Life becomes quiet and it is a beautiful and terrifying place.  I am so use to fighting, to removing myself from my body of symptoms, it was foreign to stop fighting and go inward and be at peace with this body I have often felt so betrayed by. I was thankful for all the work it has done...yet ache for the day I could run or walk and see muscle tone...or please oh please get rid of this "muffin top" tummy that is so foreign to me...ahh the joys of vanity!

Today as I was lying in bed with eyes closed, I thought of how lucky I am because the one thing I know is that I am loved.  I am loved and cared for by those I pay and those I don't.  People always seem to go the extra mille for me.  I heard Robin Robert's say she hopes she is different after her illness, and I have always said I didn't need to get so sick to understand the fragility and joys of life, but I understand the hope to be different.  The hope that when freed from this illness or living within it you can take this experience and transform it.  Transform it into something that you couldn't have imagined or dreamed and it is then all worth it.

We lost Nelson Mandela this month and I thought of how he never knew if or when he would walk towards freedom but he prepared anyways.  What an extraordinary lesson to be prepared for a life after that one would not dare dream of while confined.  We often seem to say, "I will when..." and yet we all know when isn't a certainly, only now is.  So for now I think it best I go into a little cocoon and stop reaching out but prepare for within, with the hopes that this little caterpillar may one day have her dance as a butterfly. 

Wishing everyone health, happiness and love this winter season, I will see you in the spring. 

How did I not know about Aloe Blacc...
if you love music hit the link
"Wake Me Up"

Feeling my way through the darkness
Guided by a beating heart
I can't tell where the journey will end
But I know where to start

They tell me I'm too young to understand
They say I'm caught up in a dream
Well life will pass me by if I don't open up my eyes
Well that's fine by me

So wake me up when it's all over
When I'm wiser and I'm older
All this time I was finding myself
And I didn't know I was lost

I tried carrying the weight of the world
But I only have two hands
Hope I get the chance to travel the world
But I don't have any plans

Wish that I could stay forever this young
Not afraid to close my eyes
Life's a game made for everyone
And love is the prize

So wake me up when it's all over
When I'm wiser and I'm older
All this time I was finding myself
And I didn't know I was lost

Didn't know I was lost
I didn't know I was lost
I didn't know I was lost
I didn't know 

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