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.
 
 THE 2010 KNITTING OLYMPICS

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.

DIAGNOSIS! and a very special afghan

I began experiencing my symptoms of Narcolepsy in 2003 after a Craniotomy to remove and biopsy a lesion in my Hypothalamus.   The biopsy  revealed that the lesion was a Hypothalamic Hamartoma, and would only require annual MRI's to monitor for any "changes".  I will tell the story of my Brain Surgery later, but I had none of my Narcolepsy symptoms until after the surgery.  This presentation is classified as Secondary Narcolepsy.

I say "my symptoms" and "my Narcolepsy" for two reasons.  First, Narcolepsy has many symptoms and everyone with Narcolepsy has a different combination of symptoms.  Also, these symptoms also manifest in different ways and are always experienced from a unique individual perspective.

There are many factors that contributed to my Narcolepsy taking 6 years to diagnose.

The major factor was not being able to have consistent follow-up after my surgery.   I did not have health insurance for many of those 6 six years.  A few months after my surgery I lost my job. It was mainly due to stupid mistakes that I was making at the end of the day.  It is only now that I am able to look back and realize that these mistakes were due to the development of my Narcolepsy.  I then went back to school and with my past medical history I was unable to find/afford health insurance.

It was not until 2007 that I had a full time job with Health Insurance.  At this time my symptoms had been fairly consistent for about 3 years.  My symptoms primarily include:  Excessive Daytime Sleepiness (EDS), Hypnagogic Hallucinations, and Sleep Paralysis.  I will discuss how I experienced each of these symptoms in separate posts - I want to get to the YARN!  Both the Neurosurgeon and Neuroendocrinologist I saw at this time missed opportunities to refer me to a Sleep Specialist.  They are both very good doctors who have saved and improved countless lives.  I am not going to "out" them publicly.  I do not want to do anything that might impede all of their good work.

In June I finally snapped out of my denial. I realized that I was only able to function at my full time job by consuming copious amounts of caffeine and participating in very few other activities.  Occasionally I was able to attend a Wednesday night knitting group, but sadly that was about it.  I was also curious to see what my rather strange presentation of Sleep Paralysis looked like on Polysomnography.

In July I saw a Sleep Specialist who ordered an overnight sleep study followed by a Multiple Sleep Latency Test (MSLT).  Both tests were "dramatic" for Narcolepsy.  I will blog more about these tests and my results in the later post.  I know it isn't a contest, but my MSLT results are the most "dramatic".  Basically they monitor your brain waves over a series of 20 minute naps spaced about 2 hours apart. They then calculate the average time it takes you to reach the first stage of sleep (fall asleep).  They also evaluate the data to see if you reach REM stage sleep during these naps.

The MSLT is considered positive for Narcolepsy if it takes you an average of less than 8 minutes to fall asleep and if there is REM stage in at least 2 of the naps. (MSLT criteria found here)

My MSLT consisted of 4 naps.  I fell asleep in an average of 1.4 minutes AND there was REM stage in ALL 4 naps.  DRAMATIC!!!!!!

It did take me a few months to realize that the care I was receiving from my sleep doctor was inadequate.  Narcolepsy is very rare and it takes most people with Narcolepsy some time to find adequate care.  Secondary Narcolepsy is also very rare, accounting for less than 1% of all Narcolepsy cases.  There are no Narcolepsy experts in my state.  Two weeks ago I began a medical leave of absence from my job (fingers crossed that I am approved for FMLA and Short Term Disability) so that I can establish the care and treatment I need.  I found a Narcolepsy expert with experience and interest in Secondary Narcolepsy.  I feel very lucky that he is only 2.5 hours away in the next state.  I have also been able to establish care with a Behavioral Psychologist who specializes in Sleep Disorders, and he blogs!!!!

It this point, I feel very lucky.  I have no doubt that I am on the right to get the absolute best care and treatment possible.  However, I work in Health Care.  I have a base of knowledge that allows me to advocate for myself in a way that other people may not.  (Please see notes at end of post.)

I NEVER GOT TO THE KNITTING!!!!!!!  Well, something tells me that if you were only interested in knitting you probably never got this far into the post.  Next post - only knitting!!!  (Well, except that my current project is a very special afghan, which will actually be crocheted.....)

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DISCLAIMER
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.