Category Archives: EDS / POTS

Wrapped in Emerald Green Silk…

Pattern: June Bunnies Shawl by Inese Andzane

Yarn: Luminance Lace Yarn, color: Thoughtful

Clarification on my last post: Most of it was written over a month ago and was accurate for that time, but doesn’t necessarily hold true for the present.  I’m feeling much better now.  I’m up and around, back to every day life.  Occasionally I’ll go on a bit of a coughing jag, usually triggered by singing or reading aloud at length, but most of the time the cough is completely gone.  I have to be careful to try to keep my seasonal allergies under control.  My stamina is not great.  By late afternoon I’m totally worn out.  I feel like all of my muscles have atrophied and I fear I’ll never get any strength back.  I’m soft and squishy, like a baby, only I don’t wear it nearly so well.  A month of inactivity, coupled with medications that cause weight gain and my none-to-perky metabolism have weighted me down, quite literally.  I’m still trying to get comfortable in my body as it is now, with its limits, sensations and appearance.

Every time I experience a health crisis it feels like a serious setback and I worry I will never fully recover the level of wellness that I had prior.  It’s a valid fear, as this has been my experience at times in the past.  Not every time, but enough to cause anxiety.  This feeling of forever loosing ground and never being able to make it up?  Not reassuring.  But I am doing what I can to heal under less than ideal circumstances.  I’m falling back on old herbal remedies, slowly trying to bring vibrancy back into this tired body of mine with gentle movement, and trying my best to hold on to hope.

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Confessions of a Frazzled Mother

I was scrolling back through recent posts, looking for something, and I got drawn into reading a bit here and a bit there.  And all I could think was, “For goodness sake.  Out with it woman!  Come on now!”  How ridiculous it must be for you as the reader to be subjected to all of these posts with their little cryptic hints and glimpses.  So I gave myself a stern talking to in which I told myself to either explain the situation or shut up already.  In truth I didn’t mean to mention any of this here at all, it just somehow seeped into my writing unbidden.

My issues with sharing this particular subject are that I don’t think I can succinctly explain the situation.  There are matters of privacy and stories that aren’t really mine to tell.  And it’s just depressing, which is not what you come here for and not what I want out of this space.

The very short version is that one of our children has been quite ill, for a long time now.  Over a year now struggling with various issues, with the last six months being desperately intense.  Thousands upon thousands of dollars worth of tests and treatments have not yielded much in the way of answers or improvement.  We know that Lyme Disease is a factor.  We know that EDS is probably contributing to the situation.  We know that there are some heart issues that may or may not have been triggered by Lyme.  But on the over-all picture, including why the logical treatments aren’t really having the desired effects, we’re still somewhat in the dark.

In the last 14 months, quite apart from on-going EDS/POTS issues, I’ve had two cases of lyme/babesiosis myself (If you’ve not heard of it, babesiosis is tons of fun.  It’s basically like having malaria).  Steve who is usually a rock health-wise has been dealing with his own complicated medical issues, also still unresolved.  That’s not even counting the constant barrage of minor issues that are bound to come up in a house full of seven people.

All of this comes after several years in a row of what felt like one endless health crisis after another.  Just to give you a feel, some of the highlights from last year alone included a stroke scare, worries over a potential aneurysm, three herniated discs, three members of the family requiring extensive cardiac work ups, followed by a recommendation of heart surgery for one, a sleep apnea diagnosis, concerns about a potential hole developing in a major blood vessel in my brain, and grounds for a dementia screening when a particularly fierce strain of Lyme went to my brain and I had trouble remembering what a month even was, much less what month it was.  Just to name a few.  Folks, I’m fried.  We all are.  It’s just too, too much.  And it’s been too, too much for too, too long.

What this means right now is that for three-four of the last six months I’ve had a child who can do next to nothing during the day and who is up literally all night, every night, in pain.  And by all night I mean until 5, 6, 7 am or later.  With the months on either end featuring maybe a good week or two where things seemed like they were getting back on track, followed by a decline ending right back where we started.  As the sole night time parent this means I’ve been up all night on every occasion.  Thankfully, Steve is able to take the early morning shift, from 3:30 or so on, on the weekends.  But with four other children, I can’t exactly sleep away the weekdays.  I’ve been tied to home, deprived of sleep, driven to desperation and frankly on the verge of collapse.

We’re in a “better” period just now.  Where I’m getting that last child off to bed once and for all by between 12:30 and 2 most nights.  With the child having a degree of wellness during the daytime that we can work with.  That picture above was taken just before two in the morning, when I finally had a chance to sit down to correct the day’s school work and prepare for, well, later that same, seemingly endless, morning.

I’ve honestly been very anxious, depressed and over-whelmed within this whole situation, though I am trying hard to fight it.

All the knitting and sewing and “where does she find the time?” projects?  This is what I do because I need to be near by, I need to force myself to stay awake, and I just don’t have the strength or brain power to do anything more.  And while my little projects are immensely comforting to me, I assure you I would far prefer a well child, a bit ‘o peace of mind and a good night’s sleep.

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The Handcrafted Wardrobe: On Mothering Daughters and Self-Worth

‘As a child, I never heard one woman say to me, “I love my body”. Not my mother, my elder sister, my best friend. No one woman has ever said, “I am so proud of my body.” So I make sure to say it to Mia, because a positive physical outlook has to start at an early age.’ ~Kate Winslet

I take this quote very differently from how I did the first time I read it.  I can’t say that I’m at a place where I’m comfortable walking around declaring myself a ravishing beauty, and I’m not sure that I would ever want to be.  But this much I know; I am now a mother of daughters.  They watch me and from watching me they are learning how to move through this world as women.  If I tell them they are beautiful while being harsh with myself, they will instinctively see beauty in their own children, but never in themselves.  If I say that I don’t like my smile or my waist or my hair or my thighs, that there are parts of me I am ashamed of, what will they think when someone innocently tells them how much they look like me?  I am proud of my body.  Against many obstacles, It has grown and nourished five unique and amazing people.  I don’t think I can ask better of it than that.

Long time readers of my blog may remember that in years past, I was virtually unseen.  I am 5′ 0″, maybe 20? 30 lbs? over weight at the moment.  I have thinning hair and more stretch marks than smooth spots.  I have crooked teeth and chronic dark circles under my eyes.  When I’m unwell all of my veins show through the skin on my arms and torso like some kind of freaky 3D diagram of the circulatory system.  I can be ghostly pale and often appear just plain haggard.  Growing up the message that I was given by society is that women like me do not deserve to be seen.  That we have to be altered before we are worthy.  Worthy of what exactly I don’t know.  Everything it seems.

I want to say that there is nothing wrong with me, but that would be an outright lie.  But the things that are “wrong’ with me are the makings of my own private struggles and manifestations of my humanity.  There is nothing about me that makes my image unfit for public consumption.

I knew that with this project I would be opening myself up to judgement.  And I have.  But I feel very blessed to be able to say that in over 10 years of blogging in this space I’ve only received one nasty comment.

I’ve spent pretty much my entire adult life trying to find a comfortable and healthy relationship with the shape of my body.  And it has been a challenge because over the last 17 years of motherhood, that shape has altered time and again.  I have my set backs, but mostly I accept and embrace what is.  In recent years I’ve been caught off guard in finding that I have a hard time seeing myself look sick.  I find it upsetting.  It makes me feel fragile and I find myself avoiding mirrors and cameras.  In part this project is a way of forcing myself to face myself.  I’ve found that I have to desensitize myself to my own image.  And a couple of years ago I started consciously doing just that. To try to be comfortable with sharing a picture even if my hair is a mess or I don’t like the look on my face or the way an outfit fits.  To get used to being me in the world, with all of my flaws and imperfections.  For me to accept who I am without fear or concern about what others will think of me.  Because that is what I want to teach my daughters, in all of their flawed, imperfect, deep, and eternal beauty.  That is the gift I want to give to them.  And I am not fit for this work of going against the world and myself and all I’ve been taught, but I plan to keep on trying all the same.

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An Open Letter to Sufferers of Ehlers-Danlos Syndrome, POTS, Lyme Disease and Chronic Illness in General

Because I am sometimes contrary, in the very post after I stated that I rarely talk about chronic illness in this space, I’m now talking about just that.

I often get asked for advice about living and cooping with chronic illness.  In the most recent round of emails I felt like I was talking to more than just the person I was writing to, so I decided to share some of my thoughts here.

No matter how alone you feel, know that you are not actually alone.  That there are many people who know your pain.  Too many people.

Creative thinking is your best friend.  Think about all of the things that you love to do and the things that you need to do, the most important things, and find ways to make them easier.  Readers of my blog know that for me one of those things is knitting.  Supporting my elbows on a nursing pillow has helped to eliminate a lot of strain on my body.  Perhaps a special mat at the kitchen sink or stove would help to alleviate pressure on your joints?  Maybe you really do need that air conditioner or extra pillows to support yourself during sleep or just a really comfortable place to sit and rest.  Seemingly little things can make a big difference in quality of life for us.

Make your home and life accommodate you in as many ways as possible, not just in what you surround yourself with, but how you approach tasks.  For example being in the garden might be easier during certain hours.  For me that’s before the sun breaks the treeline or after it sinks below it or on cooler, overcast days.  Instead of bending or kneeling to work try sitting with all of your tools in reach, maybe on an old folded up blanket for a cushion.  Weed or plant as far as you can reach and then slide over to the next spot.  Find ways to keep doing what you love.

Nature is the great healer.  Seek solace in the great outdoors.  I say this full well knowing how complicated that statement is for those with Lyme.  A stunted half-life confined indoors with fear is often harder.

If your children are affected, forgive yourself for not knowing sooner, for not understanding what it would be like.  Guilt can not help them now, only love and commitment can.  Forgive your own parents for not having or seeking the answers.  In most cases, they just didn’t know.

A hot bath can take the edge off of many kinds of pain (just be careful not to pass out getting out of the tub!).

Diet makes a huge difference for myself and my family.  My husband could eat a brick and his body wouldn’t notice, while the rest of us have to turn away many healthy foods because we can’t handle them, never mind the junk!  It’s hard.  Very hard.  But it keeps us going.

Try to find ways to manage your pain.  You won’t always be able to tough it out.  Hurting people tend to be angry people and angry people tend alienate the ones they love.

Sometimes all you can do is hope that tomorrow is a better day.  That’s ok.  It might be and it might not be, but never lose hope.  Never lose hope in the future.  Never stop trying to find ways to improve your quality of life, but (!) do not wait until that miraculous “someday” when things are “better” to start living your life.  This is the one body you get.  The one life you get.  Use them both to their fullest.

Try to take the time to find beauty in life and be grateful for something everyday.  Some days this will be hard.  Some days it will be impossible because you won’t be awake for long enough or lucid enough or able to tolerate your pain.  Keep trying.  The first day that you can is, in and of itself, something to be thankful for.

Resist the temptation to define yourself by your illness.  It is an aspect of your life, perhaps even a very large aspect, but it is not who you are.  Chronic illness takes so much from a person, do not let it take your identity as well.

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spring sunshine and when bad things happen in threes

Oh, that littlest love of mine!  She would be outside 24 hours a day if she could!  As such, she seems to be forever sporting a muddy face and wild, wind swept hair.  And an imagination.  Such an imagination is developing in this tiny girl!  It’s amazing and endearing to watch as she mixes her mud muffins, adding a pinch of air to season her “greens” with and taking careful sips from an empty wooden cup and declaring her “tea”, “very ‘licious”.  Though sometimes that imagination of hers takes on a life of it’s own!  For example, several times a day I am very urgently called to save her from a bear.  No one knows where exactly this concept of a bear came from or why it has stuck, but it seems to be code for, “Mommy I’m out of my depth!  Pick me up now, quickly!”

The garden is coming along.  Sort of.  In fits and starts.

This post is something of a contradiction; pretty early spring scenes and difficult words that I’m stumbling over.  I’ve been quiet here lately.  Honestly, I’ve been quiet everywhere.

I have been struggling mightily.  While still actively treating the Lyme Disease that I contracted again last year, I’ve recently managed to acquire yet another tick borne illness.  This came just as I was finally starting to feel better and getting a sense of truly starting to reclaim my life. At the same time, there are others in our family with their own health struggles.  As the primary care-giver this means life can be very difficult, to say the least.   Complicated practical considerations aside, I’m daily called upon to model a sense of hope and optimism that I rarely feel.  It is both challenging and humbling and can quite frankly be downright depressing.  I am trying to rally, I really am.

I had been planning a project that I was really excited to share with all of you.  I was kind of hoping that you would be excited about it to, because I would like to do it together.  I’m determined to find a way to make it work still.  I need something inspiring to hold on to.

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full disclosure

Monday marks nine years of blogging here for me. What started out as a way to keep family and friends updated on our journey while trying to recover from toxic mold exposure has turned into something much more. From the beginning it has also been a place for me to focus on and appreciate what was and is good and beautiful in the middle of an often challenging time. In all these years I’ve really resisted the idea of monetizing my blog. That was just never the point of this space for me.

I’m sitting here writing this on a Wednesday morning.  So far this week the various members of our family combined have had an MRI, an MRA, multiple EKGs, x-rays, an emergency room visit and extensive blood work.  And the week’s doctors appointments are far from over yet.  I’d like to say that this has been an extreme week, but it’s not all that out of the ordinary just now.  We’ve had 4 emergency room visits in the last 6 weeks- all for different members of the family- and each with it’s associated follow-ups with various specialists.  That’s without even going into all of the planned appointments, the medications, the supplements.  We’re kind of coming apart at the seams.  As if trying to balance and live with the stress of multiple chronically ill people within our family wasn’t challenge enough, the added strain of our mounting medical bills is simply too much.  This is such an easy and obvious source of potential income that I can literary no longer afford to overlook it.

It’s important to me that any company I support be one that I personally use.  What do I buy?  I buy yarn.  And the vast majority of my yarn comes from Knit Picks.  Their wide selection fits our budget and lifestyle while offering me lots of creative flexibility.  I have no less than four projects using their yarns on my needles at this very moment.  I’ve been sharing projects featuring Knit Picks yarns for years now.  Becoming their affiliate seemed logical.  They are supportive of independent designers, organize charity fundraisers, and are committed to ethical manufacturing practices.  I think we’re a good fit.  So in the future, if you follow a link from my site to the Knit Picks site and make a purchase, a portion of that order will go towards supporting our family.  The same goes for purchases made at Amazon.  And I thank you in advance, from the very bottom of my heart.

Worsted Weight Yarns from knitpicks.comThis week is Knit Picks biggest sale of the year.  I have my own small order to place for some holiday crafting- woolies to warm my babes in the months ahead.

happy knitting,

Melody

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white sands and grey sands

     This post is all interrelated, but only from my perspective.  It’s all curled around and into itself like that shell.  I could try to explain it, but I don’t think it would make much of a difference to you.

Do you know that song?  We used to sing it as a round in the family folk chorus we attended years ago.  I often found myself humming it or singing softly to myself as I worked on this little dress, while sitting on a beach back in June.  That Rabbit Heather Tweed yarn with it’s little flecks of rich brown and delicate beige reminds me so much of the sand on the shores of a particular pristine kettle pond, one of my very favorite spots in the world.  It’s peaceful there.  This entire dress was knit while we were away, but I only recently worked in the ends and added the button.  I thought it was so of that place that I needed to work some part of it in somehow.  I brought home a little pouch of trinkets that I thought might work: small shells, smooth pebbles.  This sea snail shell seemed to make the best button.

Reading, reading, reading; thinking and researching and reading some more.  I’m reading Why Can’t I Get Better: Solving the Mystery of Lyme and Chronic Disease in bits and pieces, whatever sections seem most relevant.

     Healing Lyme: Natural Healing and Prevention of Lyme Borreliosis and Its Coinfections by Stephen Buhner came highly recommended to me, and is rather heavy as you might imagine.  It’s a very valuable resource, full to the brim with important information.  Yet, I’ve been struggling to get through it.  In the beginning it was because vision problems were causing me difficulties, but also because it was freaking me out and I could only assimilate the info in small doses.  Even so it still made me feel like there were ticks all over me and tiny worms corkscrewing themselves into my eyeballs and brain.  I’m towards the end now, where I thought I would feel hopeful and I suppose I do to a degree, but the protocol is vast and over-whelming, so there is that as well.

Then there is Out of the Woods: Healing Lyme Disease for Mind, Body and Spirit, also difficult for me to read, but for entirely different reasons.  While the other books come from a more technical place, this one is mostly a memoir.  One that I can relate to so intimately.  For most of the book she is struggling- desperate and suffering.  When she describes how she feels physically it conjures up such a strong and acute sense memories for me of the way that I felt or the way I still feel.  All the same it is inspiring and very much worth reading.

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life goes on

When I haven’t posted here for a while I have a hard time getting back into it.  I sometimes feel like I’ve lost my voice.  Kind of like when you run into an acquaintance you haven’t seen for a while and neither of you really knows what to say.  It’s hard to get the conversation started. I think it was good for me to have a break.  It made me wonder about my future in this space.  Perhaps it’s time to move on?

As you may have guessed, our computer problems passed the point of no return.  My laptop wouldn’t stay on for more than 2 minutes at a time.  It has since been replaced, but I’m not completely set up here yet.

I don’t think it will come as a great galloping shock to anyone to hear that I’ve been struggling this summer, and if I’m completely honest for some time before.  There are many factors, but I think the most pressing one is this feeling that I’m spending my entire life either being sick or trying to catch up from being sick.  Normally I’m very good at putting things into perspective.  This is my life.  This is the body I’ve been given and I’ll be damned if I’m not going to make the most out of every possible moment!  But this last round kind of did me in.  Not just physically, but spiritually and emotionally as well.  The last time I got Lyme Disease, I was probably the healthiest I’d ever been in my adult life.  I had worked very hard to get to that point.  And in all the time since I’ve never recovered even a fraction of that level of wellness.  I made it back to functioning (and even that often requires a whole lot of just pushing through the exhaustion and pain) and never more.  To be in that situation again, I couldn’t help but wonder what would be lost this time?  The better part of a much needed summer for starters.  So I’ve struggled.  I am struggling.  But I’m trying.  And the more I can be a part of the beautiful every day and reclaim my life as I wish it to be, the lighter that burden feels.

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It was the best of times…

At one point I was going to post here about postpartum bliss.  So much is said about postpartum depression these days (rightfully so, information is so very important), that I think I was a little startled to find myself experiencing the exact polar opposite; inexplicable, deeply abounding, over-whelming joy, even in the face of unpleasantness.  Kids yelling, roof falling down around our ears, up to our eyeballs in laundry, me smiling serenely and telling my bewildered husband how much I love our family, make my heart beat funny exultation.  It’s there still, in glimpses here and there, precious, perfect, fleeting moments.

And then there is the other side of the coin, more pressing just now, stifling at times.  I have the capacity for such great joy, in a family that I love, in a life that I love, housed in a building that I love, settled in a landscape that I love….trapped in a body that often seems determined not to let me enjoy any of it.  Everyone has their sad stories, their struggles.  I know this.  And I also know there are stories far worse then mine.  Nightmare-ish existences that cause me to bow my head and give thanks for everything I have, every single day.  But I also doubt that every person out there reading this right now has a folder on the desktop of his or her computer titled “if I die”, full of letters to their children.  This is a big chunk of my life right now.  Testing my genes, testing my heart, testing my brain, testing my mother (!) testing, testing, testing.  All in the hopes that the next test or the next expert might be able to tell me whether or not it’s likely that I could drop dead at a moments notice with no warning.  So there’s that.  How worried should I be?  I don’t really know.  And no one else seems to either.  I rarely talk about it and I often play it down if it’s ever brought up, but secretly I worry.  I worry a lot.  A little about me I guess, but mostly I worry about them.

I try to put it all aside in my mind when I can.  At night when I lay awake trying to plan contingency on contingency for a time when I might not exist, I remind myself to put a hand on Steve’s chest or back or arm, sleeping beside me steady and real and here right now and his warmth and the beating of his heart calms me.  When I feel well physically it’s easier to forget.  Much easier.  I live in the moment and those snippets of indescribable transcendent joy flicker in and out on waves of laughter.  When I’m unwell, a shadow falls over everything, lost in a fog of fear, worry and pain.  It helps to accomplish things- to move forward in life despite everything.  Only often when I do those types of things, I end up paying in pain later on and being smothered in the fog yet again.

Sometimes our life is lush gardens, the softest of ballet slipper pink yarn, heart to hearts in a room full of hand drawn horses, a 5 year old little girl digging up weeds on the side of the road to plant in our yard, home made pie cooling on the counter next to a bouquet of old-fashioned cottage garden flowers.  And sometimes it’s laying awake at night staring at the ceiling worrying that no one else will remember the trick to taking away the pain of a bee sting or what to do when someone wakes with a leg cramp in the night.  Agonizing over where to leave a letter for my husband, so that he’ll see it when he needs it, but not before and what to even say?  What will he need to hear in that moment?  Wondering how long it would take a baby who’s never known anything other then nursing to sleep in her mama’s arms to give up and accept that mama’s not coming back.  Our life is all of those things.

I haven’t been posting much here lately.  We’ve been busy.  I’ve been tired.  Sometimes it’s just too much effort to write and sometimes I don’t want to waste my good day or good hour in front of a computer.  But I also think that part of it is that I’ve been afraid.  Afraid that if I started typing all of this might come pouring out and what then?  When I realized that, I decided I should just own up to it and move on.  I created this blog during a rough patch when I needed to stop and see the good in life.  Posting here helps me.  It’s like a narrowing of focus, a meditation on all of the many things I have to be grateful for.  I don’t know how often I’m going to find the time and space to post in the future, but I want to be sure I have the option to do so unfettered.

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