Loch Ness Knitting

I was really sick last fall, and really didn't have a lot of hope for my future.  This wasn't a mood problem, it was existential.  I had a deadly neurological injury and not too many prospects for recover.  As you know, I had dislocated my neck in an unusual way and the neurosurgeons were not too excited about my chances.  Thank G-d, I survived and actually even got a bit better. 

In the midst of it, my husband's friend, who is obsessed who with interested in Scottish culture, found something online about a new knitting festival in Inverness, Scotland and mentioned it to The Amazing E.  E printed the website out and gave it to me as a birthday present.  It was a gift of hope.  He promised he'd send me when I got better.

It's next month, and I have a plane ticket and hotel room booked.  The folds at Virtual Yarns have told me that Alice Starmore is interested in meeting me!  I'm excited. 

I should be knitting my entry in the Nessie monster knitting contest.  They're actually having a contest for that!  I had an idea to spin my own yarn.  Maybe I still will.  Huh.  Wouldn't that be something?  I should get going on it. 

Going to the Fair

It's the time of the year for the local agricultural fair.  There's a fairly competitive and large knitting section at this fair, and last year I entered for the first time.  I entered an Aran sweater I'd knitted for Saul and my Loch Lomond sweater, and did quite well.  Great, if I don't say so myself.  Loch Lomond took first in ladies' colorwork cardigans.  Saul's sweater took first in kids' cabled sweaters, but also a best overall in children's knitted garments.  So I'm entering again.

So far, I'm intending on entering the Na Craga I knitted for Elijah, my Elizabeth of York, Anne of Cleves, the Rosebud Faroese shawl, possibly my Nadine silk tank top, the Aberlady sweater I just finished, my Eala Bhan, and possibly the sweater dress I made Kay last winter.  I'm also rushing to finally finish my Luckentyre.  Wish me luck!

OMG, Like, She Says She's Got Something Else?

It's a long list.  I'm sure, in fact I know, some people roll their eyes when I say on facebook that I have another diagnosis. Something else is wrong.  Yes, something else.  How can another thing no one has heard of be wrong?  Well, to start with, the sort of person who asks that question probably doesn't want to stick around for the answer.  That person is just incredulous.  But yes, I do have a lot of diagnoses.  The reason is that what I have is Ehlers-Danlos Syndrome.  It's actually a syndrome and not really a disease.  That's where it gets complicated.

A disease is a specific health condition with a specific reason behind it.  Say one we've all heard of.  Influenza.  That's a disease.  It's a well defined problem caused by a specific virus that causes a set of symptoms that run a pretty predictable course.  Syndromes are different.  Syndromes are fuzzy.  They're defined, but they tend to be a cluster of problems and maybe we don't know why people have them, or they get them for a number of reasons.  Take Ehlers-Danlos Syndrome.  It's a really funny one.  It's caused by a number of collegen problems, not just one.  People with EDS are missing some of the genetic information to make a type of collagen, but it's different types of collagen.  For some people it's type 3, and others it's type 5A, and there are others.  They all cause the similar group of problems called that taken together are called Ehlers-Danlos Syndrome.  Clear as mud.

So people with EDS have a group of health problems caused by a genetic mutation.  That group of problems together is the syndrome.  Some of us have more on the list, some have fewer.  Many of the things on the list will be orthopedic injury.  However, it's found that we also get skin problems, and also problems with our hollow organs.  Another group of problems we get are neurological.  These seem to come as a result of what is really an orthopedic problem - The joint between our heads and necks gets really messed up and interferes with the spinal cords and lower brain, and sometimes spinal fluid pressure.  We get cardiac problems because your blood vessels and heart are hollow organs, and we have problems with those.  We get tummy problems and digestive trouble - again - hollow organs.  We have pain.  Lots of pain.  It's because the lack of collagen makes all our body parts fragile and break easy.  Start to see the problem?

So yes, I have a long list, because so many thing CAN go wrong when a protein found all over your body isn't being made right.  Just off the top of my head, and not to be an exhaustive list, I've lately been diagnosed with these things, and I think they're actually correct:  cervical medullary syndrome, atlantoaxial subluxation and instability (this is fused, but there), pubis symphasis dysfunction, sacro-illiac joint dysfunction, gastroparisis, multi-directional shoulder instability, osteoarthritis, chronic pain disease, postural orthostatic tachicardia syndrome, orthostatic hypotension, colitis, vestibular hyperacusis, periformis syndrome, and c3/c4 segmental instability.  This is just what I can think of, and these are all diagnosed by specialists, not by me or Dr. Google.  We're also working on diagnoses for what we suspect are neurogenic bladder, small fiber neuropathy, some other form of dysautonomia, and a mast cell disorder.  Getting the diagnoses pinned down takes time.  So I schlep to and from doctors at least once a week. 

This is real, and it's my life.  HaShem made me this way.  It just is.  It's not my job to be inspiring or overcome it because this is just in my genes.  It's only my job to live with this.  Talking about it isn't scary or negative.  It just is.  It's how things are for us or my family.  It doesn't make us pitiful or make our family dysfunctional.  Hiding it does.  I just that I have limitations on what I can do, and only I and my family really understand what they are.  It's not a shame or embarrassment.  It just is.

34 Years

It took 34 years of active searching to figure it out; to figure out what was wrong with me.  Really.  34 years of going to the doctor.  Of going to many, many doctors and telling them that there was something very wrong.  34 years of dislocating joints, fainting, pain, vomiting and shitting blood, vertigo, limping and schlepping on a weak leg, tremors, a cough that wouldn't go away, and I don't know what else.  I went to dozens of doctors over the years and had dozens of invasive tests. I even lost a child probably because of not knowing what was wrong. 34 years.

It was apparent even when I was a child that something was wrong.  I had delayed motor development, lower extremity weakness, small stature, poor wound healing, and neurological symptoms.  I'd also had Group B Strep disease as an infant and developed meningitis.  However, I did recover from that according to the doctors.  However, somehow, my childhood health issues were still incorrectly attributed to this illness and not further investigated.

The effort that actually was made by my parents was that I was encouraged to take part in athletic activities to address my obvious "weakness" and "clumsiness."   This did become a lifelong thing, at least until recently, and was a double edged sword.  The general level of exercise made me stronger.  That's a good thing.  However, it increased my potential for injury by a lot, and injuries I did get.  A lot of injuries.  These were not only poorly treated and misunderstood, but often non-healing and contributed to my poor quality of life now.

As I got older and gained some voice and control over my health care, I started insisting on finding medical care, knowing that something was wrong.  The first diagnosis I managed was migraine.  I now believe that I never had migraine to any significant degree, but that I suffered with cervicogenic headache and the gut problems associated with EDS, but it was a start.  That diagnosis came when I was about 12.  But at the same time I started to faint.  I also started to get more joint dislocations.

With my new autonomic problems and the joint dislocations came something new.  My first case of doctors, and my family, believing that my medical problem was psychiatric.  As it turns out, this is not uncommon with EDS patients.  It is very, very common that EDS is misdiagnosed as psychiatric.  I spent years in therapy with a shrink who believed that I was fainting for attention and intentionally harming myself.  The thing was that I could never, ever remember intentionally deciding to pretend to faint or to make myself fall or get hurt.  That only reinforced the issue.  It was drilled into me that I was doing this, and that I had an unconscious level of self hate.  I didn't think I did, but I was told I did.  So I must.  It really affected how I saw myself for years.  That inside myself lived a secret self injuring, self hating personality that I didn't have awareness of.  It was an elaborate story that I was told about myself, and my family bought this because they didn't believe in my physical illness.  Personally, I thought myself very strong and self aware.  I worked so hard at accomplishing things, at self reflection, and at becoming a better person who wouldn't do these horrible things that I couldn't remember doing.  I put so much energy into it.  I studied religion and ethics and completely changed my way of life.  The physical illness remained.


Getting into my late teens and early twenties, I asked my own doctors to investigate.  These were small town doctors and it was the late 1990's.  They diagnosed a series of "atypical" cases of autoimmune diseases.  Things like, MS,  lupus, and ulcerate colitis.  Each diagnosis was debunked when I finally did get to an academic center for testing. 

All this time I was still getting strange dislocations.  I had long, long periods of chronic weight loss or gain with vomiting and diarrhea that went completely unexplained despite who knows how many colonoscpies and barium swallows.  Lots of other things were going on, but I sometimes couldn't afford to go to the doctor, so I didn't when couldn't afford it.  I was always in medical debt, but I never, ever got any better.

It was in around 2002 that I suffered my first real "EDS" injury, even if we didn't know what it was at the time.  It started as a pain in my wrist, but quickly got so bad that I couldn't use my left hand.  I'd had a minor injury at work that just turned into a runaway nightmare because it wouldn't get better.  I ruined my life for two years.  The injury was an unusual type of trapped nerve.  I can't remember how many orthopedists I went to.  I think I saw 4 different hand surgeons until I found one who could fix it.  In the mean time, I was accused by one doctor of faking the pain and injury for financial gain of some kind.  It cost me two jobs and I nearly became homeless.  This is EDS.  Doctors telling you you're faking when they can't figure out what's wrong. 

The nightmare didn't stop there.  It's really been nonstop.  I've been given low dose Chemo therapy for the lupus I didn't have.  It took 7 years to diagnose and get surgery for a trapped nerve in my lower leg.  It was very similar to what happened in my arm, and I went to doctors saying I thought it was a trapped nerve.  Every single one but the last said it was a strained muscle.  For 7 years that muscle was strained.  Because when you have EDS, you can't possibly know what's happening to your body.  My extreme dysautonomia has been misdiagnosed as everything from anxiety disorder to malingering to intentional faking.  This was to the point that I stopped seeking treatment for that problem until it became life limiting.  It took two years to diagnose my life threatening neck injury.  By the grace of G-d, I survived long enough to have that fixed.  When I had a partial hip dislocation and went to a hip doctor, he not only refused to examine me, he told my husband that I was faking and refused to refer me to another doctor, and this doctor knew I had EDS, unlike everyone else I've mentioned.  I did end up needing part of my pelvis fused so that I could walk again.  Didn't I mention that I couldn't walk?  No?  He thought I was faking that.  This is what happens when you have EDS.  It's so bad that even doctors don't believe us when we come in with horrific injuries right in front of their eyes.  I cannot figure out what it is about this disease that sparks the incredulity.  It's not a pretend or controvertial disease.  It's a well established diagnosis and accepted to exist, but when many doctors see it, they seem to be in shock or something.  Generally, they tell me that they just don't believe that EDS can look or be this bad, so I can't possibly be as sick or hurt as I seem.

And then there was my pregnancy care.  My first pregnancy ended with the death of my child at birth.  I was 40 weeks pregnant.  It was horrific.  Yet when I was having my third child, I was denied specialty care because I didn't have a serious medical problem.  At this time, the connective tissues at the base of my skull and in my pelvis were literally falling apart and after the pregnancy I needed them fused.  But they said I was fine and needed nothing but routine care.  This is AFTER my diagnosis.  AFTER.  Even when they knew what was wrong, they said I didn't need care.  Hold on a second.  This was my third pregnancy and two years after we found out I had EDS.  The obstetrician knew I had it, knew about what happened to my first child, and said nope, EDS patients aren't really sick and don't need any special care. 

My diagnosis came after my second child was born.  An experienced pediatrician saw something in me or him and referred us to a geneticist.  We went.  The geneticist asked me a lot of questions and examined my son.  Then he looked at me and said something to the effected of "I don't know if your son has Ehler-Danlos Syndrome.  We can't tell at this age.  But you do."  He explained what it was.  My body doesn't make the structural collagen in my connective tissues correctly.  The ligaments and tendons in my joints as well as my skin are VERY fragile.  This makes are joints what they call unstable - they dislocate and fall apart, and it's measured on a scale of 1 to 9, with 9 being the very worst.  I score a 9; this is very unusual.  He says I'm the walking picture of the disease.  The diagnosis has since been conclusively confirmed, and second and third opinions had.  I don't even have an unusual case, unless you count an unusually bad one.  I have very typical, very severe EDS.

People with EDS have fragile bodies.  Our joints are fragile. They come apart, rupture, dislocate, and get arthritis easily.  Sometimes it happens in really unusual and even life threatening ways, as happened with my neck.  Our internal organs can rupture.  Thank G-d this has not happened to me.  We have a high risk for very bad obstetric outcomes of all sorts, from premature birth, to uterine rupture, to fetal death.  Our skin literally rips and tears, and it doesn't heal properly.  Our brains can herniate out of our skulls (this is not happening to me, but it does appear to be starting to happen to my son).  Our digestive systems can stop working, like stop moving, so that we have to be tube fed.  Mine does appear to be in the process of stopping.  I have problems swallowing and my stomach does not empty properly.  And I am in pain all the time.  This is my life.  It took 34 years to diagnose this.

And I can still walk into a doctor's office and still have them not believe me, even with a note from my geneticist.  I'm not inside the doctor's heads, but it seems like doctors are trained utterly incorrectly about EDS, in as much as they are trained.  It's genetic and rare.  Okay.  I get that.  But it's about as common as Cystic Fibrosis.  You've heard of that.  So have doctors.  But most doctors I've seen have barely heard of EDS, and tell me things like that I don't LOOK like I have it.  Well, I do actually.  They're either thinking I should look like a Marfan's patient, which is a related problem, or like the rubber people in old circus side shows.  You know the ones who could stretch their skin inches out?  Yeah, they certainly had a form of EDS.  I don't have that form.  But I do have the typical EDS facial features, and the typical hand and feet features, but you have to look.  They're subtle.  They also just can't believe, I think, at how staggeringly bad it is when they actually see it.  EDS makes your limbs fall out of the sockets and your head come loose at the neck.  For real.  It hurts.  Bad.  I think they're not told how bad it is, and get the impression it's mild.  Worst of all, honestly, is a general failing in how doctors are trained.  In general, if a patient has more than a certain number of symptoms at once that are from different parts of the body, many doctors are trained to be skeptical of the patient's story at all or to think of a mental disorder.  So if you show up saying that your shoulder comes out of the socket, you have chronic diarrhea, vomit a lot, you faint when you stand, you have burning pains in your hands, and a bad headache in the back of your head, there are many doctors who will just refer you to psych or say to just get some rest.  For an EDS patient, this could mean that you have multidirectional instability in a shoulder, cervical instability, gastroparisis, dysautonomia from any number of causes, and possibly that your brain is literally falling out of your skull.  But you didn't get a workup at all because your doc didn't believe you because you were too sick.

I've had to stop working.  It's about time.  I owned a business that I'm shutting down.  I spent a lot of time trying to shore it up.  I spent money trying to get training so I could built a part time job so I could control my own hours and work around my disability.  I really wanted to find something that would keep me among the working and tried everything.  This has all failed.  The training cost money.  I also had to get therapy that wasn't covered by insurance for this last injury.

Is there hope?  Well.  Yes.  My illness cannot be cured.  The next injury is around the corner.  What I can do is to spend what time I have with my family and children and try to enjoy the life I have.  But a meaningful career is not in the picture.  I need at least two more surgeries I know of right now: one to fuse another part of my neck and another to fix another trapped nerve in my hip.  I'm at the doctor at least once a week.  You can help.  You can help with the debt we have from trying to get me working when I was still hopeful of being able of doing something, and from the bills.  We have a fundraiser here.  Please share it if you can.  The Chesed Fund

To find out more about EDS please see: http://ehlers-danlos.com/

The Fibers are NO GOOD

I don't think I ever put it up here.  It was four years ago when a geneticist figured out what was wrong.  We knew that something was wrong for a long time; if you've been reading this blog a lot you've seen it, too.  There were tummy problems and joint problems, and then the mystery of the death of my first child.  The problem had gone misdiagnosed for years as a series of autoimmune diseases that didn't quite fit, or as psychiatric illness (read: that I was a faker who wanted attention).  The solution started with Saul.  When he was less than a year old, an older, more experienced pediatrician at Walter Reed sent him to a geneticist.

I took him.  The question was whether Saul had Ehlers-Danlos Syndrome.  The geneticist looked at Saul, pinching his skin and examining his joints.  Then, he turned to me and said something to the effect that he couldn't tell if Saul had that disorder, but that I did.  I was the walking poster child of the illness.

It's in the fibers.  Literally.  The fibers of my body were bad.  There's a tough fibrous substance that holds you together called collagen.  There are several types of it.  My body was making it incorrectly, and causing me to be sick.  My internal organs are too stretchy and therefore don't work just right.  My joints are weak and literally come apart, never to heal.  My skin is like putty and shreds.  That's the problem. 

It's my fibers.  The irony, right?

So I get some pretty strange injuries, and I get them for seemingly no reason.  My latest injury was that the first two vertebrae at the top of my neck came apart.  They came apart from one another just from holding up my head for 39 years.  When I say apart, the surgeon told me that the joint space was about 1cm when he opened me up.  It should be almost non-existant with the two bones just about flush. 

I did get that surgery at Walter Reed, and it was right after my last post.  Within a couple of days, they called and said I needed to pack my bags and get on the operating table.  It couldn't wait anymore, and there was a room available.  Actually, it was a life threatening injury, and we all knew it.  I was on the list to get the next available neurosurgery slot. 

Now the bones are permanently bolted back one on top of the other, and I'm recovering.  This operation was a major one, and I'll be out of commission for a long time.  Along with the rods and screws in my neck, the bones have to knit themselves together.  I'm stuck sitting in a rigid neck brace while this process happens.  Normally I'm a process knitter, but I can't say I like this particular project. 

This Always was a Knitting Blog - The Sexiest FO's of 2015

I did a lot of knitting in 2015.  The truth is that after the birth of Saul, I didn't knit for quite a while.  Then about this time last year I needed an operation to fuse some bones that had come apart in my pelvis - that'll probably be a recurring theme in my life from now on, getting bones fused back together.  I took knitting back up at that time in a pretty big way.  Actually, it was a little before the surgery, when my mobility became limited and I was sitting more.  As I was recovering from that operation, this latest thing started to become apparent, and I started getting pretty sick with it.  The sad truth is that I've been pretty much a shut in the last year as this instability in my neck progressed.  But I've had the time and attention to really become a master knitter, and have tackled several of the Starmore ladies' patterns in the last year:

The project pictured above I finished around Purim last year.  It's Elizabeth Woodville from the 2013 edition of Tudor Roses.  It was made in Virtual Yarn Hebredian 2 ply in the Solan Goose and Driftwood colorways.  I knitted this one specifically while I was recovering from the operation I mentioned, and it was selected to be easy, mindless knitting.

The next project I finished was Loch Lomond, also a Starmore pattern, in the original kit from Virtual Yarn.  I HEART this sweater.   It took about 6 or 7 weeks of knitting, and took first place in ladie's colorwork cardigans at the county fair.  I consider it my fanciest piece of clothing and like to wear it to shul.

After that came some knitting for the kids.  Also Starmore.  I made BBK here a coat last spring.  It's Secret Garden from The Children's Collection, and I ordered Hebridian 3 ply for it in Driftwood.  I had to try the 3 ply out.  I had big plans for another project, and wanted to get the feel of the yarn.  She loves this sweater and wear is regularly.

Do you know, she's 2?

And this one.  This one took two ribbons at the county fair.  One was first place in it's class, but it also won the purple rosette for best in show for children's knitted garments.  It's another Starmore.  Surprise!  This from Aran Knitting in Bainin.  Boy, I don't like the Bainin yarn.  It was made in little kid size for my son.

Over the summer I knitted Starmore's Oregon Hat and the cowl, too.  Don't have any picture of the cowl.  It's a gorgeous pattern with 10 or 12 colors.  At this point I have one and a half of the gloves done, but I've found I detest knitting gloves, so no matter how much I will them to be done, they just sort of sit there without me working on them much.

Then throughout the fall I made a push to finish some more sweaters that were either new or sitting on needles.

The first was Elizabeth of York (2013) in Tormentil and Lapwing.  I made it with a Ravelry KAL starting in late September.  This little vest is actually probably the most technically challenging project I've made.  I had to totally rework the increases on this stranded knitting.  I got about 6" into it the first time and found the increase scheme to be totally inappropriate for someone not 4'9" tall and built otherwise like a Barbie doll.  It also has three different sorts of knots in the knitting as well as purls on the out facing side of the knitting.  It made for a challenge to keep consistent tension on a garment later expected to fit.  I got the brass buttons at a shop in Colonial Williamsburg, so they're meant for historical reinactors and fit with the garment nicely.

Unfortunately, you can see that by this time how skinny I'd gotten from my illness.  I've been having trouble eating the last year.  Swallowing has become difficult, and I've lost about 50lbs.  It was one way to lose the baby weight.  Fortunately, they've finally scheduled my surgery at Walter Reed, and I hope to be getting better soon.

The next project I finished was Alice Starmore's Eala Bhan.  The Amazing E gave me the kit for this the previous Hanukkah, but I didn't get to it right away.  I finished it in November.  It's in Hebredian 2-ply Mountain Hare.  The buttons are Swarovski crystal.  This sweater is a major undertaking, but well worth it.  It's knitted to 7 or 8 stitches per inch and is cabled all over, so it'll take forever.  But it's gor-ge-ous.

The next sweater never should have happened.  I promised it would never happen.

Years ago, E asked if I'd knit him a sweater.  I told him I never would.  It would take two long.  And when I say I'll never do something, he knows that hell will freeze solid long before it is ever likely to happen by my hands.  Well, now I knit like the wind, and I decided to knit him a sweater for our 8th wedding anniversary.  That's right, I said 8th.  And I did it in secret.  He had no idea.  This Na Craga (also from Alice Starmore's Aran Knitting), was knitted in Hebredian 3-ply in Tormentil and took me 4 months of secret knitting time.  He wasn't even happy when I gave it to him, just shocked.

Hold on.  I'm almost done.  This was a fast knit.  It's Anne of Cleves from the 2013 edition of Tudor Roses.  It's soft and fluffy in Debbie Bliss Cotton Angora that was sitting in my stash forever.

And my last project of 2015 was not by either of the Starmore ladies.  It's a mini version of Koolhaus by Jared Flood.  I made this one to fit BBK in Blue Sky Alpacas Worsted Hand dyes.  I knitted this up in an afternoon.

I'd Thought It was the End, but Jeremy Clark-Erskine is Back in the News

I'd sort of figured that last post was the last of the blog, finishing up that Rheingold wrap after six years and becoming a suburban mom.

Maybe not so much.

So yes, in 2006, after he'd escaped from prison in Indiana, I met Erskine in the Chicago area and dated him for a few weeks.  I let him into my home and he must have used any small amount of time I spent taking a potty break or any other thing taking documents and credit cards out of my desk.  He spent thousands of dollars on my credit cards in just a week or two and stole my car when I became suddenly and mysteriously ill enough to need to be hospitalized.  I still don't know if it was coincidence or not.

Late last year I got some more emails and comments to this blog asking for updates on Jeremy Clark-Erskine's whereabouts.  There wasn't much to say.  He served out his last sentence and was released in November, 2015.  As far as I knew, he still owed the fine State of Indiana, who has allowed him to escape jail twice, some time on forgery and escape there, but for whatever reason they didn't take him back like they could have.

What have I been doing?  Sitting around knitting and trying to take care of my kids.  It's not easy lately.  You see, I've developed a pretty nasty complication of my Ehlers-Danlos Syndrome.  It's cervical medullary syndrome and a really bad case of altantoaxial instability.  The first two vertebrae at the top of my spine are coming apart so badly that it blocks blood flow through my vertebral arteries when I turn my head.  It's also putting pressure on the top of my spinal cord and giving me trouble with important things like swallowing and regulating my blood pressure and heart rate.  My body sort of can't do those things anymore well.

Right now I'm waiting for surgery at Walter Reed National Military Medical Center in Bethesda, MD.  They have some really good neurosurgeons there who know how to do this operation because aside from suburban moms with EDS (or rheumatoid arthritis), other people who get atlantoaxial instability are guys who have been blown up or in crashes.  Walter Reed is also home a major amputee center and where our most seriously injured combat veterans are sent for treatment.  My family also gets our general medical care there because The Amazing E is an active duty service member and stationed in the area.  I bring my kids to Walter Reed for their sore throats and other owies and see, every single time, dozens of men and women who have been blown up in service to the United States.  I'm in a lot of pain, and pretty disabled right now.  My surgery has been delayed because the neurosurgeon who was going to do it got deployed to Afghanistan and we had to get the other neurosurgeon up to speed on my case.  I'm still waiting, hoping for my turn in an OR at Walter Reed.

And I got a phone call today.  It was from a reporter in New York.  Erskine has been arrested again. He'd been out of jail for less than 2 months.  I'm told that when he was arrested, he was posing as a wounded warrior and hoping to profit from it.  His car had Purple Heart plates.


It sticks in my craw.  I don't know what exactly he's being charged with this time, but perhaps they'll find a way to not cut any deals, throw the book at him, and to keep him in jail forever.