Wednesday, May 29, 2013

Want to meet...

I like this woman...I like her a lot and I have never met her, probably never will, but it doesn't matter, her brain is working faster than mine is right now and I like anyone who is wicked smart..

Check out her blog...thank you Mary Schweitzer, thank you very much.

Slightly Alive

Sunday, May 19, 2013


My hair is beginning to fall out and I am scared.  It's one of those things that at first you kind of ignore or make excuses for such as..."well it's always in a pony tail.."  Well my hair has been firmly in a pony tale for about the last 5 years and I don't remember taking a shower and putting a handful of  hair on the edge of the shower so it doesn't clog the drain.  I don't ever remember the waste basket besides my bed all of a sudden accumulating hair that comes out when I run my fingers through it.  Or the new routine of feeling like a need a shower to remove the strands of hair that or lingering on my arms, legs and shoulders.  It's these things that you don't ever remember even crossing your mind.  And then it's the careful examination in front of the mirror and seeing these little areas of a hairline that use to be different.

I don't say this about most of my features, but I love my hair.  I became devastated about fourteen years ago when I became allergic to hair dye.  It took about a year to figure it out.  I kept breaking out in hives around special occasions.  People would say, well maybe you are nervous to be in your cousin's disrespect but why in the hell would I be nervous, I'm not the one getting married.  And then the fateful day when I got a deep deep red color and 6 hours after I got home my neck was so swollen in hives that I took so much Benadryl I was knocked out cold.  When in the morning I still was swollen, I called the salon and said, "are people allergic to hair dye?" and got a resounding "yes."  No fucking way!!!!  Had I known what was coming down the pipe line this would have been a blip, but at the time I LOVED dying my hair.  I tried for awhile all different types, but after landing in Prednisone land for over 2 weeks a wise decision was made that this was the end of the road.  One of the up sides is that because I no longer dyed my hair I have Locks of Loved it twice.

Luckily, I have pretty hair.  The color is really nice, and somehow at 41 so far I haven't gone gray...where is the wood I can knock on.  Now in the grand scheme of things this hair dye thing, though I still miss those fresh shiny locks that seem to wake up your face, it's one more thing that just moved way down on the list.  But this, please no.

Good Hair Day - November 2012
I was okay until I was going through old pictures while putting together a picture book for my niece and saw some photos from this past Thanksgiving, and my friend Jami even said, there is no denying your hair isn't the same.  The good news/ bad news is, I thought it would make me cry.  But it hasn't, and that in it's own way shows me what I have learned to live with or I should say without.  It's hair.

I talked to my doctor briefly about it, and she said she was surprised I hadn't lost more sooner.  So, we will see.  I am ever hopeful it's a temporary situation from the exhaustion of the treatments.  I have three more treatment days left and then the summer off.  So we are working on the plan to "re-build."  If you had given me a list 8 years ago of all that would be taken away from me I would hand you it right back and say give me a bottle of pills and a cozy bed and it's been a good ride.  And then you come to find what you are really made of.

Friday, May 17, 2013


Yesterday was my birthday.  I spent it in Phoenix mostly by myself, which as other CFS'ers will appreciate was perfect.  It was only so nice because I was not "alone".  It took the pressure off to attend a party that would tire me out.  Instead I had the joy of just being, and taking in lots of love.  I was on the phone a lot.  I got pretty flowers from my doctor on Wednesday and I was so surprised by the gesture.  I had been a million miles away when she came through the waiting room door holding this beautiful bouquet.  Even more precious was the fact that her office manager had called my parents  house to see what kind of flowers are my favorite.

Flowers from Dr. D and Assistant

Kristine who helps me every day also arrived with a vase full of blooms.  All those that "help" me while I am here went above and beyond with kind words and gestures.  I "Facetimed" (apple skyppe) with my sister in the morning and my niece and nephew virtually opened my presents for me since they were very fragile handprints that are staying in Wisconsin until next week when I get back.  Then my favorite part of the day I went to the mail box and opened a handful of cards while eating lunch at my kitchen table.  This was pure joy, I wasn't in bed eating.  I was sitting at a kitchen table, slowly savoring each card while having a ham sandwich.  It all felt so NORMAL...and it was bliss.

Flowers from Kristine and Lad (her husband)

I talked on the phone too much, and got a ton of texts.  Fedex arrived at 6pm and my parents present arrived that my mom was getting very disappointed that 2 day air hadn't worked...but it did.  My friend came over and joined me and we watched the Season Finale of Grey's Anatomy, a show that we started watching many moons ago when we started medical school and though not as good anymore, it had that aura of familiarity that I have grown so much to appreciate for it's structure.

There were moments of sadness and reflection like most birthdays as I now entered the 4th decade rather than celebrated it's first entrance with mock enthusiasm.  I realized I am physically not the strong person I had imagined I would become when I was in my mid and late twenties; running 7 miles, go go go.  No, my life took a drastic turn but I can look back now on that diversion and feel quite proud of how I have coped with a life of limitations.  I am and always will be most proud of how I have chosen to share in others joy the way they celebrated mine on my birthday.  This illness is not a choice, but it does not come without a responsibility.  It has taught me how to teach others it's okay to be happy and live your life around me, I will not be bitter or jealous, I will be happy with you.  I will not pretend this is easy, it is perhaps the most difficult, but it is what I can give when so many others things I use to give have become limited.

There are many many days when I see no light, but others show it to me.  When I have no strength and others remind me I have done this before. When I feel so lost and someone shows me kindness that they don't even realize.  I am proud that I have learned from this rather than be defeated from it.  And I am proud that while I may envy my own life that I use to have and wish I could close my eyes tonight and wake up tomorrow and take the first flight to Paris - I have never wished others dream less or live small, instead I have pushed just the opposite and to live through and cherish their successes even more.

If this is what it means to get older, I will take it.  I will never not miss what use to be, but I will also never stop trying to be more, learn more and be better because of these circumstances.  I will look at that "former" self with such gratitude that I took the opportunities and didn't squander them, and I will continue to do the same now.  I cash in my joy every minute I can and embrace when I see others do the same.

This was taken from the page of  FB Susannah Grace
A woman living in England with Severe ME/CFS
Hope Is the Thing with Feathers

I would feel remiss if I did not stress, this is possible because I am healing.  There use to be no energy, not an ounce before that wasn't used to just get out of bed.   This has not been mind over matter, the strength to see a bit of light is because some of the chains have been lifted.  I read too many stories of so many people suffering with no change with this illness, not the financial resources to seek out different solutions, as far as this illness I have won the lottery.  I say this because do not hold those in chronic illness to a standard that healthy individuals can barely manage.  Be patient.  Be kind.  Be compassionate.

Sunday, May 12, 2013


I got a Facebook message from an old friend saying they were looking forward to my return to Wisconsin "powerhouse".  And I powerhouse.  Those are your real friends, your true friends, the ones that some how "get this".  These are the people I am ever so grateful to have in my life.

I have been addicted to "The Mindy Project".  First, I love her clothes, her apartment and her irreverence have kept me company on some pretty bad days.  And okay, I needed to hunt down this sweatshirt...but not so hard considering apparently there are a ton of websites for that, is where i found this one.  So then as someone with a lot of time on my hands I decided to get her book...Is Everyone Hanging Out Without Mindy Kaling.  Hang in there, I will make a point soon I promise, bit brain foggy and this story is going much better in my head than on paper..well computer...
Good Song...Feel Again..Cute Montage..
Two friends seeing each others strengths when they can't...
Okay, so back to the "powerhouse".  I was reading the aforementioned book and there is a section in it where Mindy and I in real life have a little bit of shared history.  The details are a bit different and so is the ending, but I was thrilled to read someone else write about an experience I have tried to capture in the written word...being stuck on a high dive.  The difference is Mindy finally jumped, I held my ground.  This is the important stuff, because I consider Mindy Kaling a "Powerhouse."  A smart, witty, take charge writer, director, actor and producer...who did I mention wears great clothes.  So if this "Powerhouse" was convinced to jump, I have now come to the conclusion that not jumping - well that was a powerhouse move.

I am thankful that in the mid 80's there were not camera phones or youtube or facebook because now in hindsight this is all just a memory to be recalled and altered as memories do over time.  Instead of this event  being played over and over and over and expand this moment in time.  What are children to do now that their moments are captured forever?

I was ten, I think.  It was a dare.  And I may have written about it before, but this is the difference, I am beginning to see the "Powerhouse" evolve.  And for some reason the timing of reading this montage in the Mindy book and Gina's powerhouse comment I was lying in bed and this thought popped into my head...I bet George (my dad's dad..aka my grandpa) spun this story if he had been asked to emphasize   the not so immediate conclusion that this was a powerhouse move.  He was good at has taken me a bit longer.

This is how I hear him telling it, "You wouldn't have believed it.  All the pressure, the life guard first demanding she jump and not climb back down the ladder.  Then another life guard, Scott gets up on the high dive and stands behind using all the coaching muster of a enthusiastic cheerleader with every gimic possible to convince her that jumping off this high dive is the most amazing life altering thing in the world.  Still no, she stood her ground.  Not even after they blew the whistle and cleared the pool with all these angry kids not being able to swim now on a hot summer day sitting on the edge of the pool with their feet dangling in and all eyes staring up, ahh the pressure.  Then a child even got kicked out of the pool for jumping in not giving this "epic" event it's due respect.  You should have seen it, her toes were dangling off that board for at least 20 minutes and still that stubborn little Taurus decided no folks, not today.  Nope she still stood her ground, honestly, give me one solid argument why a ten year old needs to know how to jump off of a high dive and can't climb back down the ladder.  There is none...and she knew that...that's my girl."

Me, Holly and Sophie...and the sweatshirt 

At the time it felt like a failure, however, somewhere deep down it cemented the idea in my head that somewhere in me if it means something - I will not back down.  Sometimes that is all we can do, we can't win or change something but we can decide to not back down.  And within that simple concept is the only seed you need when you have nothing else to maybe win the war.  It showed me I could stand up to enormous pressure if I dug deep.  It gave me the courage to not stop looking for treatments, to battle with doctors, to get a Midwest plane to go back to the gate so I could get the hell off.

So thanks Gina, I guess there is a Powerhouse somewhere in me, just depends upon how you look at it and often it takes others to point it out.  Isn't that what we all need, for our friends and family to see our weaknesses as our strengths when we can not.  And back to our Powerhouse Mindy Kaling...well that is the great under story in the relationship between her and her TV partner, they see each others strengths, even when not admitting to it...

Monday, May 6, 2013

1000 Words...

Nothing is as participating in life...thank you my dear friend Stephanie for me always knowing that my efforts to attend are met with joy and are the yang to my yin and have never made me feel less than because of this illness. There is no greater gift.


Thursday, May 2, 2013

but itself...

It's 10am and after a long day yesterday the first thing I feel when I wake up is daunting fear.  Will I be able to make it back home tonight?  I force myself not to think of all the steps to get there, and instead focus on the fact that it is 7:30am and I never feel well or strong or courageous at 7:30am.  It's a bit hard to be afraid of normal things, because there seems little reward when you complete the task, just a frustration that it was so hard in the first place.

When I was in the doctor the other day I browsed through Pema Chodron's book, When Things Fall Apart and there was the following sentence, "When I was first married, my husband said I was one of the bravest people he knew.  When I asked him why, he said because I was a complete coward but went ahead and did things anyhow."  This could be my mantra.  I don't know where the fear comes from, my doctor tells me a large part of it is the constant irritation that infections have on my nervous system.  When I look back at my life that does seem to make sense, when my body feels healthy I feel much more stable.  But fear is always my Achille's heal, and right now I feel as if it could snap.

It's embarrassing to feel so afraid all the time.  It's the vulnerability I suppose.  This illness for me at least seems to expose oneself raw, to be so dependent upon others, and unsure if your body is going to cooperate on any given day.  Perhaps others handle it with anger or complete mindfulness composure, unfortunately my default is being afraid...and then I go ahead and try anyways.  Fear itself in my opinion is a pretty worthy foe.

Disqus for Festzeit