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… 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 

Thursday, October 17, 2013

Never Never Never...

Got it.

It's the third Never that makes it so different, I don't know when or precisely why Winston Churchill had that saying, "Never, never, never give up" but I do know the third never makes all the difference.  I could ask my uncle, I bet he knows.  The last few weeks really that is all I have wanted to do, give up.  But I don't even really know what giving up looks like when you don't really have a goal.  It's the food thing.  I have gotten use to the fatigue, the rapid heart beats for simple tasks, the body aches that have greatly diminished, but it's the damn food.  The phrase doesn't really help me out to much when that's all I have done, is give up food.

Food for the soul, I remember those days.  People use to laugh at all I could eat, and I was never shy at a dinner party.  My goodness if I didn't have so many Jewish friends I think I may have considered converting after discovering that their Holidays are filled with the most amazing food, latkes, brisket, liver pate with little pickles and eggs on them, matzo ball soup, alright you can have your gefilte fish.  It's one of my first memories of having difficulty eating something, I was at my friend Sandy's and I normally eat latkes faster than she could serve and I noticed I felt a bit funny after having one.  So the next time I thought since I had a bit of trouble with some apples it was the applesauce, no big deal what's better than sour cream?  But then it happened again, that was my first little hint that soon potatoes and apples would be off the menu.

It is daunting to not be able to eat with ease and pleasure anymore.  And now as I have hit the 40 and fabulous I seem to be in possession of what ironically is called a "muffin top" combining my restrictions on food and my restrictions on exercising I fear that may be here to stay for awhile.  The caged bird, once again, I know why you sing.

So on days when I do feel like giving up, giving up writing, giving up trying, giving up really everything I think of the third never...and somehow, someway the third one helps me carry on.  I figure someone who decided the third one was necessary must have been in pretty dire straits...and I will be googling Mr. Churchill the second I publish this post and gain some knowledge that I clearly left behind...or call my Uncle for the cliff notes.

Wednesday, October 16, 2013

My Wild...

Into My Wild
"Will you take me as I am?  Will You?
Joni Mitchell
Quote from Into the Wild - By Cheryl Strayed

As I looked out over the golf course, my eyes seeing the tiny speckled stars I have become accustomed to, seeing the world as it's parts rather than their whole; separated, detached, moving, unsteady as my body so often feels.  I leaned against the two chairs and as my gaze drifted towards the foursome on the putting green I wondered if I would ever get to experience this world as a healthy person again?  That thought struck me without malice or jealousy, anger or bitterness and that made the question not feel so bad after all.

I was simultaneously cloaked in comfort in knowing at least their was a time I had.  I had been given the opportunity to live a healthy life much longer than many and I was still here.  I vowed once again with shaky determination to do my best to stop fighting the current of reality and find a way to create and mold this new experience as that, a "new" experience of what it takes to live without so many pleasures and eases I was once granted and dove into.  Trying again to find what I have gained in what often only feels an endless pit of what I have lost.  Looking at it as that, an experience with value and merit.  It is my experience, one I push and fight and get so angry at the constant unknown that I have separated "myself" from this illness.  I want nothing to do with it yet in that at times I then want nothing to do with myself.  I keep waiting and waiting for this to get better and begin my life again, and yet this is my life and somehow I have purposely forgotten that.

This week my experiences included two trips to Mayo Clinic for a minor test that turned out fine.  Yet two days of three flights of stairs due to my claustrophobia had my legs feeling like they had run a marathon.  An injection into my lymph nodes into my groin, the 10th I have had.  One blood treatment, one blood treatment that wouldn't work because I was too dehydrated.  An IV push of minerals that made my face flush and my body hot and yet I was tethered to the needle so my doctor and I discussed the "Good Wife" to distract myself.  My experiences included my 500th ham sandwich and mundane spaghetti with meat sauce.  A trip to the pool that I prepared for with the precision of an day long outing, yet I was in the pool no more than ten minutes and paid for it with achy exhaustion the next day.  A moment where I couldn't take it anymore, couldn't take one more second of every little thing being so hard so I took a 1mg of Xanax to let my body take a break from it all and so grateful that I am not an addictive personality that I can have those moments of repreive.  And a head so foggy at times I wonder if I am really talking...

I have done all this while finally having enough energy to begin reading, Wild, From Lost to Found on the Pacific Crest Trail by Cheryl Strayed.  I thought in reading it I would feel more lost and alone myself, so wishing that I could do something drastic and life changing to "change" my life...but those of us with a Chronic Illness or locked in circumstances beyond our control know that is not a choice we have.  In my "old" life it was.  That's exactly what I would do, I would "escape" to a different scenery, and oh how thankful I am that I did it then when I can't do it now.  But in fact it was this book and her words that made me feel more not less impressed with myself.  Her struggles on that Trail are the struggles someone with CFS deals with every day, yet unfortunately we can't end our journey after 1000 miles.

In her journey of "packing" her "monster" pack, reminded me of how I carefully "packed" my purse and accessorized myself for courage as I took off for the pool.  Her aching body and tired limbs I know so well, yet unfortunately as her journey progresses she gets to see her muscles and body become increasingly stronger, but without her strength of mind she wouldn't have gotten that far.  She does it alone, and despite strangers and friends that help along the way or helped her get to the idea of the trail, illness as I said many times at the end of the day is yours alone.

My confidence has wained that I will ever be able to "prove" myself in such a daunting task, and yet who are we kidding I wouldn't choose the Pacific Coast Trail to do it, maybe a "trek" along the promenade in Nice, but somehow in reading this story is what brought me to that thought in my head, I may not ever relish in this world as what use to feel whole but that doesn't mean I am broken.  I must learn to take myself as I I am right now not as I hope to be.  And like Cheryl, my path has strayed, a diversion I would never wish on anyone but it' is my diversion and I will find my way.

Stray.."or go beyond established limits.."

Wednesday, October 9, 2013


I am so lucky to have such a beautiful view...amazing this was all in one evening...

Disqus for Festzeit