Tuesday, July 26, 2016

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.

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.  

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.  Don't ask me why.

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/

Monday, July 04, 2016

Making My Decisions for Me

The last year of my life has been really challenging.  (Hint: this isn't really going to be a knitting post.)  I've been thinking a lot over the last few month of what to say publicly about what's happened to me.  People don't understand, and part of that is because we haven't talked about it.  But there are reasons why.  Part of the reasons were the slowness of getting my problem diagnosed.  We didn't want to say too much without definitive diagnosis.  Part of the quiet also been how people responded to what we did say.  Like literally, that the story was unbelievable, and things like this don't happen.  It can't be that bad and I shouldn't be so distraught over the situation.  It's hard to explain to people that you have a rare disease that doctors don't understand.  It's even harder to tell people that your doctors don't have answers.   They tend to flat out not believe you when you say that a doctor won't treat you or that a woman of 39 may be dying or isn't going to get better.  People just don't want to hear it or don't believe it.  So we kept quiet.

Last May, after a few years of a slowly emerging problem in my neck, a ligament that keeps your neck from turning all the way around like an owl, catastrophically failed.  It had been slowly wearing down for a while, and giving my symptoms and pain for a while, and it finally snapped.  If you've ever heard of "Brittle Bone Disease," that's a collagen disease of bones.  I have a similar collagen disease of the things that hold my joints together and my skin; they're brittle and fragile.  I was just sitting on the couch and turned to talk to my son when it happened.  I turned my neck, and it turned, and kept turning, and the weight of my head made it flop around backwards.  There was a pop, and a loud roaring sound, and then that ringing sound that you hear in movies when a person gets blown up.  I saw lights.  Then I shat in my pants.  Then I picked my head back up from where it was hanging and put it back around front and went to the hospital.  As we drove all the way to Baltimore, I felt like I was falling backwards into space at warp speed.  That was interesting.  We went to Baltimore because we thought I'd been seen by people who actually know about Ehlers-Danlos Syndrome there.  They have specialists in my condition at that hospital, and my insurance had their name stamped on the card.  When I got there I was laughed out of the ER and told not to come back with my silly chronic disease problems.  They didn't do anything and didn't even do imaging.

Over the next few months I lost my gag reflex in my throat, my ability to control my voice, and much of my ability to swallow solid food.  My existing dysautonomia got worse.  This is a problem where my body doesn't regulate things like my heart rate and blood pressure so I'm in danger of fainting when I stand.  I lost control of my bladder.  I don't pee in my pants.  It's the opposite; I have a hard time making myself pee when I want to.  Going on over the next few months, I was becoming malnourished and dehydrated often and went to another ER one day because I just couldn't eat and drink.  I gave them enough information to know that I was suffering from an upper cervical injury.  Really.  They should have known this.  But the doctor wanted to know more about my history of miscarriage than my neck.  Why?  Well, same reason as the other ER.  They also did no imaging.  They diagnosed GERD.  At least I was only there for an hour instead of 9 for my ritual humiliation. 
If either of those hospitals had done the CT I asked for they would have seen a catastrophic injury:  something called an atlantoaxial subluxation.  Eventually I lost the ability to tell up from down or the orientation of my body if my eyes were shut.  I'd lose my balance and fall over in a dark room and wouldn't know it until I hit the floor.  I couldn't find my nose with my finger with my eyes shut.  I developed a hearing disorder.  All this time I was trying to get care the normal route.  My primary care doctor said I needed to accept I have migraine; all this is migraine.  My neurologist said to see a neurosurgeon, but since the primary care doctor said I had migraine, the neurosurgery department said that they wouldn't see me because I didn't need it.  EDS patients hardly ever need a neurosurgeon  they said. I should see a neurologist.  Notice that they said this without ever examining me.  There was something in my electronic medical record that told them whatever they needed to know.  Yes, they can do that, refuse even to see you. 

Five months after the second ER visit, I did see the world expert on neurosurgery in EDS patients.  I got to see him because I paid out of pocket; I went around the system of referrals and doctors who didn't believe me.  Mind you, my husband serves this country as an active duty serviceman, and one this we're supposed to be entitled to is free quality healthcare in return.   He said I had the most extreme case of instability of the first two vertebrae of the neck he'd ever seen in a living patient.  The C1 and C2, the top two vertebrae of my neck, where your head attaches to your neck, where partially dislocating every time I turned my head in either direction and completely blocking blood flow through my vertebral arteries when it did.  These are major arteries to the brain.  I was at risk for sudden death from major stroke, as well as transient fainting spells just from turning my head.  I also had a rare condition called cervical medullary syndrome.  This is all really bad stuff.  I'd been asking for the specific imaging to see this problem, because I knew this or a related problem was coming on for at least two years.  I asked for the imaging in the two ER's I visited.  I'd asked two primary care doctors and my neurologist.  By the time it was diagnosed, My life had actually been imminently in jeopardy for 7 months.  I could have died at any moment from respiratory failure or from a stroke.  And we're not talking a small chance.  If I were an RA patient with this level of instability, my chances would have been a 15% or more chance each month of dying and getting worse as time passed.

The hospital where I was seen for the second ER visit actually operated in January.  They moved fast after I forwarded them the opinion of the neurosurgeon.  He'd been the Head of Spine 20 years ago at this hospital.  They were like, "Lady, you need this operation as soon as we can put you on the table.  You'll die of a stroke."  And they got me on the table in a few weeks.  Fusing the c1 and c2 is just short of bolting your head back on. They completely shored up the top of my spine where my head sits.  When they got in there, it was actually WORSE then they'd thought.  Now, after the surgery I can't move my head on the top of my spine anymore.  It was an awful surgery.  And you know what?  It's not like it made me better.  It kept me from dying.  That was the goal; to save my life.  Not to cure me.  That's how messed up this thing was.  I got only a little "better."  All the rest of the stuff only got somewhat better.  The only thing that's really better is that telling up from down and falling over in the dark thing. That got better.

So what does this have to do with making decisions for me?  Well, I wanted to first tell you what happened physically to me, because what has happened now is that I'm permanently disabled.  Disabled does not have to mean in a wheelchair (and wheelchair does not mean cannot walk at all, because I may get one of those, and I can walk).  One side effect of my disability and illness is that for some reason people think they can make decisions for me for all sorts of reasons.  I wish they'd stop.

This happens in all sorts of ways.  One big way is the way doctors decided what care I was to get without ever considering the big picture.  I asked for care.  I asked for imaging I needed because I knew I needed it.  I asked for the referrals to experts I needed.  I did everything right.  However, someone somewhere decided that I was wrong about my condition.  Either they decided that EDS must be benign and never results in major complication, so that nothing like what I was describing could be going wrong, and so I was denied care.  They were wrong about that if it was the case.  The other possibility is that someone decided that my symptoms were phychogenic and denied me medical care on those grounds.  That means that they thought that my symptoms were all in my head. The thing is that I wasn't then evaluated for  psychiatric illness.  They made decisions for me and took away my choices in medical care.  And I almost died.  As you've read, that's not hyperbole.

And I knew I was just being denied care.  I absolutely knew it.  And I absolutely knew that I had one of three or four pretty nasty injuries to the base of my skull, all of which could result in major neurological deficit, paralysis, or death if untreated.  How?  Well, one, I know about EDS and what complications we get.  I kept track of my symptoms.  I had a pretty good idea of what was going on and what tests needed to be run to find out which disorder was developing.  We know this in the EDS community, that perhaps a fifth of us end up with these serious neurological injuries.  And then the acute injury in May of last year happened and I knew exactly which injury I was up against.  I'm not exaggerating when I say what happened in that ER.  They laughed me out of there, said the ER is for life threatening problems, and sent me home.  I got the message.  We asked for a CT and a neurosurgeon.  They said no, and then just two weeks later, the neurosurgery department in the same hospital said they wouldn't see me by referral. At the same time, my pain doctor was saying get over to a neurosurgeon at an academic center, the neurologist said go see the neurosurgeon because the bones in my neck are messed up, my geneticist said FIND A WAY TO GET SEEN RIGHT AWAY!   My life was in jeopardy.  I knew this, and they basically said I was crazy and I couldn't see a doctor.  I was distraught.  Utterly distraught.  The way I would die was like this.  Either I'd go to bed one night and stop breathing in my sleep with no warning (my kids tend to come in the bed with me, so imaging that for a second, how that would turn out), or I'd turn my head and it would cut one of the major aterial to my head that time.  Major arterial bleeding to the brain.  I often wondered if I'd be alive to hit the ground or if I'd even get to say goodbye to my family because there would be no saving throw.  I have two small kids and I was dying and I couldn't get a doctor.

We tried talking a bit about my illness in our community.  The results weren't good.  Actually, we got really, really unhelpful feedback as often as we got kindness.  I'm going out on a limb to say so and fearing further ostracization.  I know people knew I was sick, but there was a lot of conjecture about what was happening and too much not believing us or encouraging us to be quiet about it.  Some people thought they knew my "real" problem.  I couldn't possibly be as sick as I said if the doctors weren't fixing it; I must be mentally ill.  Gee, thanks.  That judgement was very helpful, especially at a time when I was being denied life saving medical care.  There were a number of simultaneous messages that we got loud and clear.   You're really messed up right now; come back when you're better (my disease is incurable and genetic, so I'm not sure how that'd expected to come about).  I'm sure glad I'm not you right now; make sure you burden someone else with this because it seems pretty bad.  No one could possibly live with this without being completely messed up, and the mess may rub off on me.  And my favorite, "if you get any help here, you have no voice on other subjects". 

Mostly the message was that no one can be disabled or get though a hard time without also being damaged emotionally by it, or that emotional reaction to hardship is intrinsically pathological and a sign of weakness.  Actually I'm not a chronic depressive at all and am rather known among people who have actually gotten to know me as pretty resilient.  I do get upset sometimes when the situation is appropriate.  I'm also known for being pretty resourceful for knowing when and how to get help, but again, we were dealing with people who have judged me without ever getting to know me, as it turns out.  Finding out that doctors wouldn't see me for a potentially fatal problem, well, that made me distraught and sometimes I cried about what would happen to my kids if I died.  I'd actually wanted to talk to a few people who were friends about it rather than just a doctor.  You know, for personal support, like you normally do.  That was mostly a mistake.  Some people tried to help and tried to help me find doctors, thank G-d for those people.  Others were really unhelpful, letting me know all the things I was doing wrong with my healthcare and priorities, and even my kids.  As I mentioned, a lot made it clear that they thought that my problem must be the crazies.  It was very upsetting.  For example, crying about that I was dying.  That meant crazy certainly, and couldn't possibly mean normal grief over serious illness and normal looking for friendship and support in it.  No.  And the talking about that, that should be done with a shrink, and not where nice people can hear. Sometimes getting upset, crying, and getting angry are actually the healthy responses.  The mental health care I did end up needing revolved around the emotional trauma from delay of care and the way I was shamed, silenced, and ignored by people I thought I should trust.  Another supposed mental health issue that's been assigned to me is that I stay in a lot.  That's also not mental illness or agoraphobia or anything like that either.  It's dysautonomia, another physical problem that doesn't affect my mind or emotional health.  I faint when I stand and haven't convinced the doctors yet that I should have a wheelchair so I can sit when I get out.  It's not fainting from emotional factors; it's fainting from a neurological deficit.  So I have a hard time leaving the house.  And I do use the internet as my line to the outside world as a way of coping with not getting out.  It's how I keep in touch and it's a wonderful thing for me.  I was shamed over my facebook use for using it to keep in touch with people.  I guess I can't win.  I also lost a lot of weight.  Again, people came up to me and suggested untreated mental illness no matter now many times I said that I actually physically had dysphagia and a swallowing disorder diagnosed by doctors with invasive and uncomfortable tests.  Or the folks who wondered out loud in hearing range of me why anyone with any sort of genetic disorder would even have kids.  I'll not comment on that.  And finally, I am disabled.  I can't go back to working.  I've been trying to go back to work for a while now and I can't.  Not even part time.  I've tried.  So I'm applying to go on social security early.  This is what social security was made for: to help people who are too sick or too old to work.  I wonder if the folks who made a point of seeking me out to say I'd be just taking money from the government for being a stay at home mom would say something similar to someone who was approaching retirement age and taking social security.  If they'd inquire if they thought they ought to take it, or if maybe they should refuse it because they make enough money, are still able bodied, aren't really retiring from the workforce, or any other reason?  Drama was injected into our lives at the most sensitive times as we were forced to take care of the anxiety of others over their doubts about my parenting abilities, and any information gleened about my health only made the situation more anxious. As if in a family with disabled parent, there must automatically be a deficit in parenting.  The poor kids.  If you're wondering if this is a passive aggressive note, I've talked to all these people.  They live with the moral certainty that telling me that I'm wrong, sick, and in a position that they should be able to tell me these things.  My feedback, knowledge of my own family and situation, or anything else has been dismissed.  Maybe they've told other people their ideas about what's been going on with me, too.  That's why I'm putting this out there.  Gossip is wrong.  You can talk to me.  I don't mind answering questions and I'm not ashamed of my illness.

Yes, I'm very grateful for the help we got.  Really.  A lot of really nice people came with meals and kind words.  Others came around to shame me for becoming disabled, or for talking about being disabled.  As if I had a choice in the matter. 

Please, I know what's going on.  You may ask what's wrong.  Please ask.  Why be ashamed to ask?  Why be ashamed to talk about this?  Do you think you're going to embarrass me?  You're not.  This is not the 1920's where we should keep the sick person in a room of shame in the back of the house, so that knowledge of the sick person does not upset people.  Or am I really supposed to limit my life so others don't get upset by the facts of my existence?  Talking about disability or illness for what it is isn't "negative talk," it's not the point of a disabled person's life to make everyone feel better by making a heroic story of overcoming our problem.  We're just living with it, and I want you to know why maybe I don't get out or I have to cancel plans.  Please, what I want is understanding.  This isn't going away; it's permanent and genetic.  Perhaps you can understand what's going on in my life.  It may help us be friends.

And lastly, please don't directly make my choices for me.  I'll be direct so you can stop.  Don't withhold information or choices from be because I'm sick and would spare me stress or something. Don't presume to make a choice for me because of my illness.  That's just nasty ableism.  I need to make decisions about my family and myself.  Me.  Please don't presume that everything that's going wrong in my life or my family has to do with my disability.  Please, if you would invite the ladies of the neighborhood to a thing, and you're intentionally taking me off the list because you think I'm too disabled to come, you're making a decision for me.  It's unfriendly.  Don't keep your kids away from mine because of my illness for whatever reason.  If you think I don't get out much, perhaps remember this.  And don't presume I make every decision because of my sickness.  If I don't do a think or chose a path, it may be completely for the same reasons anyone else would.  I'm still an otherwise normal woman.  My illness does not make me retarded, or mentally ill, negative, depressed, or attention seeking.  I'm as good and as capable a parent as you are, except that I don't feel well.  Really not well.  Please understand that.  On an average day, I feel like you do when you have a really bad flu and just fell down the stairs.  Talking about it isn't negative.  It just is.  Being sick just is a fact of my life.  It's not a decision.  That's not a decision I'm making.  Let me make the ones that are left to me.

Tuesday, February 02, 2016

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. 

Saturday, January 09, 2016

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, and I actually worked on it off and on all year, finishing 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 my 8 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.









Wednesday, January 06, 2016

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. 





Sunday, November 03, 2013

Rheingold Wrap: The Saga Ends

Six years.  Six long years later the Rheingold wrap is done.

As you may recall, I bought the kit from Virtual Yarns with the intention of knitting it for my wedding.  I would have made it, two, except that we moved the wedding date up by three months.  When it was not done, in my despair I cast it into a bin.

There it sat for two years until pity on the beautiful thing freed it for another go.  That is, until I started getting sore hands.  Another two year sentence freed the wrap again, only for it to be cast aside due to an error. It's the only error I can see in the garment.  I skipped a row in the second pattern repeat on the second half.  The error was only detected after I'd knit another few inches, and I was too distraught to tink it all back.  Or to look at it.  So back it went until I decided to finish it.

Damn it.

When I took the wrap out of jail for the last this past April, eight of the twelve pattern repeats were finished.  I worked on it with the monogamy it deserved until the knitting was done, even adding two more pattern repeats.  Then I found that I'd lost the finishing instructions.  After three emails to Virtual Yarns, they ACTUALLY emailed me a copy!

I did make a few other modifications:

14 pattern repeats
Grafted center seam in two colors
Applied i-cord edge in Lapwing
Modified color scheme for fringe
Sewn in lining of a silk/cashmere pashmina wrap

The finished wrap is about 66" long, excluding fringe.

Oh, and check it out in the final picture.  We've had a girl! I actually finished the knitting while in labor with her.  How's that for a labor of love!





Sunday, October 02, 2011

New Twisterino Colorways for Fall 2011 at Rock Creek Yarn

When you're in the yarn business, with the fall festivals comes new stuff. Here are several new fall and winter themed colorways in Twisterino sock yarn.

First, we have Twisterino in Pumpkin Pie. Remember, Twisterino is our squishy, springy two ply 100% superwash merino. Pumpkin Pie has kettle dyed shades of crusty biscuit and sweet pumpkin custard topped with spicy brown speckles.


We're celebrating Samhain with orange Twisterino overdyed in spooky black.

Can you see it? If you look really carefully you can find a skein of sock yarn in Woodland camo colors.

Or try knitting gifts from cheerful holiday colorways of cool Winter's Tale

And Sugarplum Fairy