Tuesday, February 16, 2010

Thank You Yarn Harlot for the Knitting Olympics

My life is held together with sticks and string.  I am not the first, nor will I be last, who uses these materials to find comfort, strength, and MOST importantly community. 

On Friday, as the Olympic Torch was lit, I joined thousands of other knitters in the Knitting Olympics.  The Knitting Olympics were founded in 2006 by Stephanie Pearl-McPhee, aka The Yarn Harlot. The Knitting Olympics, as conceived by Stephanie, occur every four years in conjunction with the Winter Olympics.  It is a long story, but Stephanie did not announce that she would be hosting the 2010 Knitting Olympics until her post on February 5, 2010.

Eligibility: Any knitter who, embracing the "Citius, Alitius Fortius" ideal, would like to challenge themselves while embracing the Olympic spirit, and is just whacked enough to play along with me.

Concept: You must cast on a project during the Opening Ceremonies of the Winter Olympics, Friday, February 12, 2010 and finish before the Olympic flame goes out Sunday, February 28. That's 17 days.

There are currently 3,928 athletes competing in the 2010 Knitting Olympics.  You can see a list, which includes me (A Knitter with Narcolepsy), here.  

I have chosen to knit Grove.  Mittens from Made in Brooklyn by Jared Flood, aka Brooklyn Tweed. I am knitting with 8-ply Supreme Possum Merino on size 7 needles.  This is smaller than gauge, which will make them perfect for my small hands (cue Jewel,).

I started knitting on Friday with a heavy heart.  I have been "dealing" with Menorrhagia for years.  My periods have always been heavy and my body is unable to compensate for the blood loss causing Iron Deficient Anemia.  It has taken a long time, but I have finally found a Physician, a Reproductive Endocrinologist, that I like and trust. He is a good listener, understands my perspective AND laughs at my jokes.  I have never been pregnant, and have never tried, but my Reproductive System is malfunctioning and I am relieved to have found a physician with the knowledge and experience to evaluate the entire system.

Earlier in the day on Friday, I had a Sonohysterogram to determine if my Menorraghia is due to a structural abnormality - like a polyp or fibroid.  The exam showed only an abnormally thickened endometrium.  My Menorrahgia is due to a hormonal imbalance, indicating "abnormal" ovulation.

It gets very complicated, and I will know more in a week or so after some additional test, but I may not be able to conceive.  I do not know how my Narcolepsy will effect what Fertility Treatments my body will be able to tolerate.

I may have started knitting on Friday with a heavy heart, but it was comforting to know that I was not alone.  Nearly 4000 other knitters were with me.  The spirit of the Knitting Olympics, as I understand it, is to choose to be challenged in order to advance our skills and grow as knitters.  I chose to accept the challenge of learning to knit joyfully during difficult times.

I made a few alterations to the pattern.  I decided to eliminate the first few rows of garter stitch and instead used my favorite tubular cast on, twisting the knit stitches as I "pulled" them up.  My least favorite part of mittens is picking up the stitches across the thumb gusset.  I am quite pleased with clever solution.  Instead of using the backward loop method to create a "bridge" of stitches across the thumb gusset I used my favorite provisional cast on.  This allowed me to have live stitches available when it was time to pick up across the gusset!  I find this method to be much easier and looks perfect!  (I will take some pictures of this method on the next mitten).

Last night I finally had a good cry, while on the phone with my mom.  I did a lot of crying, and little yelling - and my mom spoke softly, reminding me often how much she loved me.

I felt a little better and started to knit.  I finished the palm of the right mitten and it looked "nice".

I turned it inside out to do the three needle bind-off and....

... it literally took my breath away.  I LOVE this mitten so much more with the "inside" on the "outside".  I cannot describe the sense of calm and piece that came over me.  I had spent the past few days feeling "turned inside out" - incredibly raw and sad, and that heaviness was gone.  I created with my own hands tangible evidence that beauty and joy can be found by turning something inside out. 

I turned back to the designer's intended "outside" and did the three needle bind off.  I knew I should stop and document the moment with pictures, but I was too excited to knit the thumb with my new provisional cast-on technique.  After simply picking up the live stitches, I decided to go back and knit the live stitches.  The provisional cast on created a more of "obvious" loop to pick up than a "true" live stitch - most likely due to the twisted knit and purl ribbing.

I am so pleased with how this looks!  AND, now I will look forward to knitting the gussets of mittens, rather than dreading them.
Regardless of the physical and emotional pain that lies ahead, I am confident that sticks and string will continue to hold me together.  I will wear my "Grove Inside Out" mittens as proof that I am a knitter!

I would like to dedicate my "Grove Inside Out" mittens to Stephanie Pearl-McPhee, aka The Yarn Harlot, founder of the Knitting Olympics.  Thank you Stephanie, and knitters everywhere, for the joy that we all create together.

Friday, February 5, 2010

Facing My Previous Misconceptions About Narcolepsy

It took six years from the on-set of my Narcolepsy symptoms to get diagnosed.  I blogged in some detail about my journey to diagnosis here.

Although several specialist failed to refer me to a Sleep Specialist, I have come to the realization that my own misconceptions about Narcolepsy also delayed my diagnosis.  I do not blame myself for these misconceptions.  Misleading, uniformed and sometimes even offensive references to Narcolepsy are everywhere.  I found one today, in a very unexpected place - on MY bookshelf, in a KNITTING book.

I am working on a special project - which, if goes as planned will hopefully raise money for Narcolepsy, but more importantly awareness.  My project involves an on-line auction of donations from yarn/fiber blogger.  The auction proceeds are going to help Julie Flygare reach her goal of raising $5000 for Wake Up Narcolepsy.  Julie has Narcolepsy and is blogging about her Narcolepsy and training for the Boston Marathon at www.remrunner.blogspot.com

I started writing the official request for donations letter and realized that having a few confirmed donations would help others decide to donate too.  Now, I am sure she gets thousands of e-mails, and people ask her for things ALL the time, but if I could  get Stephanie Pearl-McPhee, also known as The Yarn Harlot, founder of  Knitters without Borders - which has raised over ONE MILLION dollars for Doctors without Borders - to donate to  the auction my goals of raising money and awareness are practically guaranteed.  If even half of her over 13,000 Google Reader subscribers read Julie's Blog I will consider the auction a success.

So, I started writing her an e-mail and I got a little stuck.  It is so hard to find the words to explain how my life has been impacted by Narcolepsy - and why I want to help Julie - and why I think knitters are people who most likely to understand living with a rare, misunderstood and often caricatured disorder.

I was really struggling with my words, and having to get up and move around from time to time to stay alert.  I own and have read several of Stephanie's books - great books about knitting and being a knitter, but I have not read every one of her posts.  I did a quick Google - Yarn Harlot Narcolepsy - just to make sure her life hasn't been affected by Narcolepsy - if it has, I am certain she would have blogged about it.

This is what Google "found":

 Results 1 - 10 of about 1,360 for yarn harlot narcolepsy. (0.37 seconds) 

Search Results

  1. Yarn Harlot: The Secret Life of a Knitter - Google Books Result
    Stephanie Pearl-McPhee - 2005 - Crafts & Hobbies - 240 pages
    Not only do men want sweaters so plain they could give you narcolepsy, not only do they want them in boring colors without even a little "yarn over" to keep ...
    books.google.com/books?isbn=0740750372... -
  2. Yarn Harlot - 2 visits - Jan 31
    Jan 29, 2010 ... Stephanie Pearl-McPhee goes on (and on) about knitting.
    www.yarnharlot.ca/ - 15 hours ago - Cached - Similar -
  3. Yarn Harlot: August 2006 Archives
    I set the book aside for a little while yesterday, and spent a little time away from the narcoleptic glow of my computer screen. ...
    www.yarnharlot.ca/blog/archives/2006_08.html - Cached - Similar -

The first link is an excerpt from her book, "The Secret Life of the Knitter."   I will quote only a small portion of the text to avoid any copyright infringement.  "... men want sweaters so plain they could give you Narcolepsy."

At first, I was really angry.  Not Stephanie... I thought, I own this book, it's my bookshelf!  And then I started to cry.  I read this book, and enjoyed it.  It was a fun read.
(I just finished knitting these mittens and couldn't resist a quick moment to brag.  They are for my mom, and my next post will dedicated to her and will include details about the mittens.)

I read this book at a time when I was really struggling with Narcolepsy, but years away from a diagnosis.  I didn't think anything of the reference when I read it, I might have even laughed.

In early 2005 I was working as a Phlebotomist.  I enjoyed the little chats I would have with my patients to help them relax and distract them from the needle going into their vein.  I remember one patient very vividly.  She was wearing scrubs, so I asked her about her job.  She said she was a Polysomnographer - she performed Sleep Studies which are used to diagnose sleep disorders.

Some people may find this unprofessional, but I asked her if I could tell her about a sleep issue that had been having, and she said yes.  So I told her about my episodes of what I now know to be Lucid Dreaming with Sleep Paralysis, and that these "episodes" started after I had surgery to remove a lesion from my Hypothalamus.  She didn't even have to think before she said, "sounds like Narcolepsy".  The blood draw was over, it was a busy out-patient lab, so I thanked her and she left.

Now, the first question this story asks is:  Why was a Polysomnographer so quick to diagnose my Narcolepsy, and all of the Physicians (all highly trained Specialists - including a Brain Surgeon), failed to refer me to a Sleep Specialist after hearing me describe my "episodes"?

The second question is:  Why didn't I believe her?

To be honest, I thought that people with Narcolepsy fell asleep in the middle of conversations without any warning.  Now, let me be clear, there are people with Narcolepsy who have this type of severe Sleep Attack.  It never occurred to me that a person with Narcolepsy might also feel tired before suddenly falling asleep or that there may be other symptoms - like sleep paralysis.  I also had already been through a lot, and was not ready to take on what felt like the burden of another "label".  I may have told this story to only one other person, my mom.  It feels good to get it out.  I only wish I could find that Polysomnographer - I bet she'd get a kick out of knowing how she was the first to outsmart all of those White coats with Ivy League affiliations!

So, I wrote Stephanie an e-mail.  The e-mail  was similar to this post, but I didn't describe my conversation with the Polysomnographer.  I thanked her though, for helping me face my own past misconceptions about Narcolepsy.  I then asked her to help me educate people about Narcolepsy by donating to the auction.  I let her know I'd be blogging about it, not to call her out but to help me face my past misconceptions.  She must get hundreds of e-mails a day, with many of them asking for help. Knitting Needles crossed - as the knitters say.  I'll keep you posted .....

A "full-circle" day for a Knitter with Narcolepsy!

On a quick side note I finished Cathy's Afghan, and gave it to her on Christmas Day.  She e-mailed me to tell how beautiful everyone though it was - but what was I calling it again?  (she requested it be "smaller" so it's not quite full afghan size)  I told her could call it anything she wanted - she replied:  "toasty awesome".  And there is good news!  Her new Chemo is working - they were able to lower dose so the side effects aren't as bad - and her growing back!

1)  I am NOT a Medical Professional.  Nothing in this blog is intended as Medical Advice.
2)  If you read something about Narcolepsy on this blog that you find to be incorrect, unclear, offensive or interesting please e-mail me at knittingwithnarcolepsy@gmail.com
3)  I am a BAD ASS knitter.  Everything in this blog that relates yarn (and other related fibers and materials) may and possibly should be used as crafty advice.
4)  I LOVE links.  I use Wikipedia whenever possible for continuity.
5)  I am blogging anonymously in order to avoid any discrimination from current of future employers.  Please respect my anonymity.  If you know who I am, which many of you do, please do NOT use my name in your comments.