Knitting With Narcolepsy

Thank You Yarn Harlot for the Knitting Olympics

2010-02-16T19:50:00.005-05:00

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.

Facing My Previous Misconceptions About Narcolepsy

2010-02-05T19:57:00.002-05:00

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

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... -
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 -
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!

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.

A Very Special Afghan for Cathy

2009-11-10T19:20:00.016-05:00

I grew up just down the street from my Bopchi and Jaja. That's Polish for Grandma and Grandpa. They both taught me many things, but it was my Bopchi who taught me how to knit and crochet.

My Bopchi mainly crocheted. Every year for Christmas all of the women in the family would get a bunch of dishtowels that she had crocheted a "top" onto so that it could be hung from your refrigerator door. I knew I was a woman the first Christmas I got some of Bopchi's towels. I would post a picture of one, but I keep all of the ones I have left in storage. I don't know what I am saving them for, but they are too precious to wipe my hands on.

My Bopchi also crocheted afghans. I am sure that all of her fourteen Grandchildren got an afghan from Bopchi. They were all the same zig-zag pattern. Mine is two shades of purple and a yarn that goes from white to purple. I have it stored at my parent's house - it has seen better days, but just like the hand towels it is always there when I need it.

My Bopchi may have taught me to knit and crochet, but my love of fiber I had to develop on my own. I cannot remember her using anything other than acrylic yarn. It comforts me to know that no matter the moths or nuclear bombs - Bopchi's afghans and towel tops will survive.

Just after Christmas last year my Cousin Cathy had a recurrence of her Breast Cancer. My first reaction was to knit her something. My first thought was a cashmere hat and cowl.

This was months before my Narcolepsy Diagnosis, and I would spend most of my time at home napping. One of the characteristics of Narcolepsy is that you reach REM stage really quickly. Since REM stage is when you dream I can often have really awesome dreams during just a 20 minute nap - we'll save the bad bits about this for another time.

I had a dream and my Bopchi was sitting in her chair crocheting, and said, "Well, someone has to make Cathy an afghan!" I woke up and started planning an afghan for Cathy - I have no doubt that Bopchi wanted me to do this - for her, for Cathy, and as it turns out, for me as well.

The worst thing about my Narcolepsy is the guilt and shame I feel for not being able to follow through on things. So, I put aside those feelings, got myself to a yarn shop, and started crocheting an afghan for Cathy. (See, Bopchi knew I needed to crochet this afghan)

Cathy doesn't know about the afghan, but I did ask her for her favorite colors. She said crayon purple and green - no pastels. I went to The Yarn Basket and decided on a purple and green in Lamb's Pride Worsted. I decided to "update" Bopchi's afghan a bit by using the Soft Waves pattern from Jan Eaton's 200 Ripple Stitch Patterns. After some experimenting I decided to use an "N" hook. I found that using a large hook would allow the afghan to be large and warn without being heavy. I want the afghan to be somewhat portable if Cathy wants to bring it to a treatment or test. My ripples are based on the Fibonacci Sequence, which I found in this scarf pattern.

I am at about the half way mark. I will be seeing Cathy next week when I see Dr. Scammell in Boston and hope to have it finished by then. But, if I don't, there will be no tears, I will be seeing Cathy again when our families get together for Christmas.

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.

DIAGNOSIS! and a very special afghan

2009-10-25T16:06:00.009-04:00

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.....)

PLEASE LEAVE A COMMENT - EVEN IF YOU JUST SAY HI, IT MAKES MY DAY!
(but if you know who I am, do not use my name in you comment)

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.