Crazy as a Loom

Tuesday, August 14, 2012

At last.

A long time ago, when I was still doing emotional/relationship drama, and thought one time that I was going to die because of my lousy choices in men, I bought this card.  I burned the edges, and then I glued it to a piece of slate.  I sealed and glossed it over with a product called "modge podge".....(they still sell this btw).....poked two holes in the slate, strung some leather through it (yes, I was into that whole hippie thing) and hung it up.  When I say a long time ago, I am not kidding......I think I made it in the early 70's.  It's practically an antique.




Today, it came back to me, when I truly needed it the most...........and I got up off the sofa, where I have truly been lounging, hating my headache,most of the day, and went out in the hall, to look at it.
Truly, I had forgotten that I still had it.
I read it several times, standing there.
The words grab me just as hard today, as they did back when I made this.

Thank you, Cupcake.  I am reserving a seat at the book signing for you, front row.

A dear friend just gave me this book, and so far I love it.  

,

Let me read you the blurb on the back of the book:

At fifty, Alix Kates Shulman left a city life dense with political activism, family, and literary community, and went to live alone on an island off the coast of Maine.  Without plumbing, power or a telephone, and foraging for wild greens and shellfish, she faced challenges that helped redefine her notions of independence and courage, confidence, and creativity.  Among the hidden treasures of the natural world, she discovered sensual delights she had never experienced and the strength to continue her journey of self-awareness as she traveled back to the mainland and beyond.

I won't be going to Maine any time soon.  I thought differently. But you know what they say about making plans.  How God laughs??   He must be cracking up right about now.

I finally have an answer, after 10 months of this headache nightmare.  I debated about whether to blog about it yet, but then I thought.......hey............my followers have listened to me blather on for all this time, they have stuck with me, they have encouraged me and prayed for me.  I am not entirely sure how I would have gotten through this without my family, my friends, and my blogger friends.
The least I can do on my end,  is to share what I have finally found out.

The answer is not what I what I wanted to hear, but it is what I deeply suspected.  And to quote a dear friend and fellow blogger:

It has a name.
It has a treatment.
It has a cure.


I told you about it months ago, when it was just a whisper.   It is called Chiari Malformation I.
I was born with it, as many people are, and I never knew it, as many people don't.
Apparently, the whack to the head last August, made it worse, and pushed me over the line from asymptomatic to symptomatic.
The pressure from part of my  brain slipping down into my spinal canal, is what causes my extreme and constant headache, which is why nothing makes it better.

My surgery will be happening fairly soon.  Why wait, right?
I will keep you posted.  Or maybe one of my daughters can blog for me.

Don't think I am all that strong.  I have cried many times since I found out.  I waver between relief (now I know why), and disbelief. 
I am not angry.  It's nobody's fault.  It happened.
There are worse things, and I know that.
This is my path.  I will do my best to get through it.
I have a lot of weaving, and a lot of blogging, to do.

My mantra shall be:
Acceptance is the answer to all my problems today.
This isn't a mistake.












42 comments:

Lona said...

Hugs and prayers. I can see why you have mixed emotions about knowing. Knowing is good. But the surgery to fix it... =(

You have rugs to weave and kitties to rescue and kayak trips to take and much, much more. Strength and health to you.

Denise at Autumn Sky said...

People can get through so much more than they imagine they can. Do you read Green Monkey Tales' blog? She was diagnosed with breast cancer in December-January, I think. She has blogged everything about her journey, including all her photos. She is so strong, even in the face of something so difficult and scary. You are strong too!!!!! Soon you will be on the healing side of this and that is a much better place to be. Hugs to you.

Deb said...

I have seen so much strength in you over the last 6 months. I know you will find a way to face this head on. You have a great family and many friends and all of us to care and pray for you. Just think...where will I be in a year from now...pain free and moving on. Hugs for you, Hilary.

suzyq said...

Big huge Cyber hugs to you - we'll all be rallying around till you're on the mend - and thanks so much for sharing that quote.
It's beautiful
You'll be well - I know that will all certainty.
XOX

Lee Anna said...

Be Strong! We're here with you, in spirit and in thoughts. We'll be here while your taking care of yourself and we'll be here when you come back to blogging. Keep us in your thoughts, you are in ours - anxiously waiting.

Best wishes for a very quick and easy recovery,
Lee Anna

Mary said...

I am sending my deepest warmest wishes of aloha.

You are being thought of in Hawaii.

Mary Ann said...

Sending you best wishes for a speedy and complete recovery. Much admired and much appreciated..looking forward to your visit to Maine..soon.
Mary Ann

Country Girl said...

So maybe you're not all that strong, but in you, there is an invincible summer.

There is a cure.

And my heart has been breaking for you for nearly a year now. xoxo

joyceetta said...

Hilary
Your attitude is to be admired. I wish you skilled, compassionate healthcare providers (nurses, doctors, etc.). I know you will come through this and be healed on the other end of it.
You know we will all be with you....I hope that can give you some comfort and strength.

MarthaVA said...

I am holding healing thoughts for you, prayers for strength for you, and prayers for guidance and steady hands for the doctors treating you.
Hugs,
Martha

rosek1870 said...

At least the end of the headache is in sight! I will be sending many prayers your way for a successful surgery and a speedy recovery! Good luck and God bless.

linda said...

Let go and let God.

Now that the beast has a name it can be tamed ~ I'm hopeful that some of your recovery time will be spent in Maine!

Shuttle, Hook and Needle said...

My thoughts and prayers are with you for a speedy recovery.
Louise

Diane Cayton-Hakey said...

HIlary... I just read about the surgery for Chiari and it's a common surgery that goes very well so no worries there. BUT, of course every surgery is NOT fun. I am just ecstatic that this has been diagnosed and that you now have an answer.

I send warm, loving wishes that your spirits are high on surgery day and that you breeze in and out of surgery. You rock, my dear... everyone is thinking of you.

Love you!

Restless Knitter said...

I'm glad you finally have an answer. Please do keep us updated. Sending many healing thoughts your way.

Peg Cherre said...

Relax. Be with it. Depend on those who have depended on you for so long.

You will heal from this surgery, and then all will be well.

Just keep thinking about how lovely life with be without a constant headache!

Gayle said...

You, as ever, are in my heart. You are also in my best healing thoughts. You will perk right along, doing what you need to do. Soon you will be saying......"I have been headache free for 3 days, 22 days, 3 months......"
xo
Gayle

Linda said...

Hilary,
I am praying that God guides the surgeon's hands and that you have a speedy recovery. Soon this all is going to be just a memory.

messymimi said...

Echoing Linda, you will be surrounded by prayer daily.

DJan said...

Know that I will be holding you in my thoughts and hope that this surgery stops these headaches and cures you. You deserve to be free of pain and totally and completely happy. I wish that for you with all my heart!

Teri said...

Sending prayers your way for a good recovery. And even after the surgery and therapy afterwards.....don't forget your dreams.

Anonymous said...

Hilary,

After all you've been through, this will be over before you can blink. Best wishes for a speedy recovery and a new, stress-free life.

Kaaren in California
gkrueg@sbcglobal.net

Anonymous said...

Peace and strength on this leg of your journey!

Diane

claudia w said...

Deep cleansing breaths. In with the good air, out with the bad.
Thank God there is a cure!
My prayers and good wishes are with you. God speed.

Donna S. said...

I hope you feel a slight relief at just making a decision & moving forward. I pray that the surgery goes well & completely takes care of your problem!! Do keep us updated.

Hilary said...

YOU are taking charge of HH now and kicking it to the curb.

You know I'll be with you in spirit.. sending you strength, love and healing thoughts.

You're going to be better than fine.

Rita said...

You will get through this.
Hugs, prayers, and healing energy.

Lydia La La said...

Thank you for sharing your diagnosis, Hilary.
We may not physically have met but we know you a little and love you.

Please let us know exactly when your surgery is scheduled so that we can send out good healing vibes and prayers.

You WILL go to Maine, just not yet.
with love XXOO

Anonymous said...

At last there is light at the end of the tunnel. I expect you are feeling relieved and terrified at the same time. I will be thinking of you from over here on the other side of the world...
Kathy from Tasmania

ain't for city gals said...

Kind of bittersweet but best to do it as soon as possible like you say!..So glad there is a fix for it...wishing you all the best. Looking forward to reading the book...

Karen said...

An answer is better than living in the dark, in constant pain, right? We'll all be right here cheering you on, Hilary.

And now I'll look for that book!

Valerie said...

I remember that style of card...in fact I may have even had that same one at some time since I was big into Albert Camus in college.

Lighting a candle and sending warm, healing intentions your way.

Daryl said...

well, this is good news, it has a name, it has a cure and you're going to get it taken care of .. hoooray .. i know cheering surgery isnt always done but in this case we're all cheering... lots and lots of hugs

Suzanne said...

There truly is an invincible summer within you! My thoughts are with you.

A Brit in Tennessee said...

I know you will find the strength to overcome this monster, I will continue to keep you in my prayers.
Yes, the anticipation is the worst,
soon it will be behind you, and life will be full of living and and hope once again.
Hugs to you dear friend,
~Jo

Cait Throop said...

Oh Hilary...a relief to know what it is, to be sure. We will all be keeping you in our thoughts as your journey continues. xo

fiberdance said...

best wishes to you and a full recovery from surgery-you are an inspiration to me and I look forward to reading your blog every day. My prayers are with you

Carol said...

You are amazing and you will continue to be so...and remember the prayers and thoughts of all of us are tucked in around you...be peaceful, Hilary, the decision has been made which helps to reduce some stress...try to stay in the moment, keeping your mind where your body is. But I have complete faith in you... all you have faced in the past was training for this very hard, difficult year of the HH but you have got this...that same tenacity will help bring you through this as well...praying you through.

JCMurray said...
This comment has been removed by the author.
JCMurray said...

This may sound bizarre, and someone may have mentioned it, and please feel free to belly-laugh - but have you seen those contraptions on tv where people hang from their feet to help decompress their spines? Would that help, gravity wise, to help relieve some of the pressure temporarily? ok.ok. the people from the crazy home are at my door to take me away. sometimes those infomercials are just amusing.

Brenda, tcvet2@cvok.net said...

Hope your surgery goes well. Unfortunately, my niece (22 years old) started her Chiari symptoms/surgeries when she was 14 & is still having surgeries & complications. she goes to a clinic in NYC, I would love to send you her Caring Bridge site, etc. if you are interested. I am sure she would walk with you through this journey & answer any questions she could. U will b in my thoughts & prayers!

Cupcake Murphy said...

WOW! xoxo. Sisters from other misters. I knew there was a reason I liked you so much.

Welcome to my world.

Because every thread counts

Because every thread counts