Of Meds and Martyrs.

Drugs are bad.

Generally in our society, this is seen as simple fact, with a line drawn clearly in the sand. That line tends to blur when you are talking about a chronic pain condition though.

Personally, I love to straddle that fine line like a rodeo rider on a bronc. I absolutely see the need for them at times. I've had a standing prescription for painkillers since I was 17, which I use at my own discretion, and feel no shame or guilt about admitting this. There are days I need to take them to get through work, or to dull the pain enough to sleep, but I have never fully gone through a bottle because it is not worth the long term damage it can do. Most days I take nothing at all, and if I do need something I generally reach for over the counter drugs after exhausting other means of pain relief.

To my mind though, painkillers are absolutely NOT a first line of defense. I've spent so many years listening to people tell me that being constantly on drugs is the only way to function. I can count on 1 hand the amount of people I have met with EDS whom agree with me, because unfortunately, drugs are an easy out for so many of us. After getting a formal diagnosis, the drug question is always the first question asked... "What have you taken to help?" "What should my doctor put me on?"

The ugliest part of living with a disease like Ehlers-Danlos is undoubtedly the people like this, and the broken mindset that accompanies so many of us.  Ask us how we function, and most will proudly give you a list of heavy duty pain meds and meds that counteract the side effects of aforementioned pain meds that reads like War & Peace. Most have a blind devotion to anything that comes from the mouth of someone with the letters MD after their name, and all too many spend so much time reveling in the attention that being so sick can bring them that they don't ever really spend time trying to get better, or at the very least not decline so quickly.

The sad thing is the drugs create a never ending cycle. You take your pain medication, which causes dizziness and nausea. You take anti-nausea medication which causes headaches. You take migraine medicine for the headaches, which causes a decrease in blood pressure. You take caffeine pills to increase blood pressure, which causes insomnia. You take sleeping pills for the insomnia... you see where I'm going with this. One pill after another, after another, ad infinitum.

I was mocked, and still frequently am, when I explain that I would rather just live with the pain I feel all the time instead of taking multiple medications. I still have a job despite it, I go out with friends, I attended public high school with almost no special restrictions (a fact that is unheard of), and I don't spend every day in bed whining and wishing. When I have something slip out of place, I see a chiropractor. I live and die by my bathtub and epsom salt. I find non-weightbearing exercise to keep me strong. I feed my muscle and ligaments all the protein they can handle and supplement any holes in my diet. These are my first defenders, but I am part of an overwhelming minority. Yes I still have bad days when I am too tired and sick to get up, but I plan to have those. I plan all big outings to have recovery days immediately following them, because experience says I need them. I never do multiple giant outings in one day, because I don't have the energy. I know I have to sit and take breaks frequently, but that's okay, because that's what managing is. It's not going to a doctor and getting pills and becoming one big giant side effect.

When I was 16 I stopped talking to every person I met who was my age with EDS because they all insisted that I couldn't possibly have this condition without being doped up to my eyeballs 24 hours a day just to cope. One girl I knew with nearly identical symptoms to me (though she actually had fewer injuries than I did) made a weekly habit of telling me about all the great new meds she was always on, and how wonderful she felt when the side effects weren't causing her to be nauseous, dizzy, fainting, seeing double, et cetera. She never left her house except for doctor appointments, and insisted that she was the healthiest EDS patient there was, and that she was incredibly brave to be facing this disease the way she did. She loved the attention being sick brought her, and made every effort to tell everyone how hard it was. She was a year older than me, and in the 4 years I'd known her had had to give up every hobby she enjoyed because she could no longer maintain any of them. At this point I was in high school, doing every school play, working for the theater department part time, helping with my mother's business, and maintaining a semi-normal social life, but she knew better than me how to cope with EDS.

The best thing as patients we can do is readjust how we look at this disease. We are not normal, we have never been 100% normal, and never will be. It is up to us to come to terms with how to live around it, which for some baffling reason so many of us find shameful. When I hear people trying to completely ignore or dull everything associated with EDS they are doing so much more harm than good. There is a difference between coping and ignoring. I cope. I am always aware of what my body is doing, and how it's feeling. If I'm in too much pain, I don't push through it, because that's my body's way of saying enough's enough. I don't ever see myself being pain free. I know I can't keep up with my friends and all that they can do in a day, so I don't even try. That coming to terms is what keeps me from needing the drugs. I don't need to feel "normal", but I strive to feel what is normal for me, where I can function, and live, and not think about EDS every second.

~Heather

My Biggest Issue

I made an informed decision to never to have children while I still was a child.

I have readdressed the topic several times over the years, each time coming up more certain that it's not only the right choice, but the only one.

I was never really heart set on being a mother, neither one to play house, nor with baby dolls. I was eight when my childhood best friend's baby brother hugged me, and I asked their mother, with what could only be described as complete disgust, "What is it doing?". That said, things change, people change, and I thought some day I might.

By the time I was ten I already was having joint pain daily. I couldn't do things normal kids did, like play on monkey bars, or climb trees because my shoulders would pop out of their sockets. My first major EDS related injury occurred not long after, when one minute I was standing firmly at the top of a flight of stairs, and the next I was at the bottom wondering what happened. I suddenly looked at my mother, who was at the time using a single crutch or a cane to get around, with the sudden knowledge that that would be me. I remember that night, as we sat in the urgent care center, asking if what happened to me was because of the condition we had. She said yes, her mother gave it to her, and she gave it to me. I said to her I wish she hadn't, and she explained that she didn't choose to, it was just a part of my genetics, like my red hair. I decided then and there that I would never have children.

The rub of this disorder lies in the fact that it's an autosomal dominant condition. This means if one person has the gene for it, each child has a 50/50 shot at getting it. I've met so many people with EDS who choose to be optimistic about those odds, especially as it pertains to second or third children. I remember very clearly one woman telling me, with some pride, upon her decision to have a second child that "My first child has it, so my second won't". I literally felt my palm twitch to slap her. I explained that it didn't work like that, that each child she had had a 50/50 shot at it, and it wasn't at all uncommon to see families with 3 or 4 children that all have EDS. At the time I equated it to playing Russian Roulette with a half loaded gun, and refilling the chamber every time a bullet came out.

To this day I still love that analogy, because it so beautifully demonstrates that having children with EDS isn't a game. As I said in my first post, this is a degenerative condition. There is no cure, and no one size fits treatment. Each of us is living with it and suffering from it has varying degrees of issues, and if you look closely at families with it you will notice that with each passing generation the symptoms are generally worse and appear from a younger age. The optimists among us love to think that everything will work out well, but speaking from experience, the odds of deliberately ruining a kids life and condemning them to a debilitating disease for no reason other than the selfishness of wanting a child is not acceptable.

 For a kid with this condition, always in pain, alienated and abandoned by their peers, I guarantee there will come a time where they truly hate and blame the parent who gave this to them, especially if they did so knowingly. My parents didn't know they had it until my mother had already had us, and my father was in a motorcycle accident when I was seven (I will visit my particular pedigree at a later date). When I was thirteen I distinctly remember looking my mother dead in the eye and telling her I hated her for ever having me, because it was her fault I was sick. It was the only time I remember being deliberately cruel, but I absolutely believed everything I was saying. I of course grew out of it. Despite her loving me and my brother absolutely and unconditionally, myself and my mother have said on more than one occasion, had she known, we both agree she should never have had me, for her sake as well as mine.

That is the other side to the EDS baby coin. EDS has so much evidence that it gets worse at every major hormonal shift. There is no bigger shift to a woman than pregnancy, and I have not once in 17 years heard tell of a woman with EDS who was symptomatic and had a baby and ever went back to how she was before. Every one, within a year or two had a sudden decline. Most end up like my mother, with limited mobility of the lower joints, needing crutches, wheel chairs, or other mobility devices. So many cannot care for their beautiful new babies with all their own physical problems. Yet so many choose to, and it baffles me.

There is this strange idea I hear all the time that people who choose to have children are selfless, and those who don't are selfish. I feel that choosing to raise a child is selfless, but that does not mean having one is, especially when one is very probably condemning them to a poor quality of life. I've always seen that people who make the best parents are those who can put the good of children above their own wants and needs, even when those children aren't their own.

I have not completely ruled out becoming a mother in my lifetime, just ruled out having children of my own. I get told by so many people that this is an absolute mistake, that I must have a child to be "complete". I have an IQ of 160, I graduated in the top 2% of my class despite missing at least a third of every school year since I was six, and come from a family with more people with advanced degrees than without. All my great-grandparents lived to over 90, my grandparents appear to be doing the same, and there is no history of cancer, heart disease, or anything other than EDS and it's co-morbid conditions anywhere near my family, but there is nothing special enough about me or my genetics that would outweigh the risks of passing on EDS. If and when the day comes for me to become a mother to feel "complete", I will be thrilled to adopt.

I will never choose to pass this on.

~Heather~

To Broken Dolls.

When I was three or four I was called a broken doll.

I was at day care, and a beautiful older boy named Carlos, who looked like Aladdin and whom I was completely smitten with, walked over to where I was sitting and said it to me. He asked me why I so weird and sat like a broken doll... with my legs all bent to the side like a W. I was, understandably, crushed, and spent the rest of my day hiding underneath the shrubbery thinking about what he meant.

It was the first time I ever thought there might be something "wrong" with me.

Looking at me, you'd never know it though, at least not most days. I look like any other healthy twenty-three year old. I have glowing, baby soft skin that makes me look like I'm just hitting puberty, I almost never bruise, and I can do yoga better than most people who have been training for years... but all of these outward signs of good health are lies.

I was born with a degenerative connective tissue disorder called Ehlers-Danlos Syndrome. EDS is a genetic disorder that effects every inch of my body, because connective tissue is in every part of the human body. That baby soft skin of mine? It's prone to extreme scarring if I get the slightest scratch. I never bruise because my blood vessels are so floppy and loose that they don't break on impact. The extreme yoga skills? They come with the added "bonus" of being able to dislocate every single joint in my body because my tendons and ligaments are like stretched out rubber bands. I have arthritis in almost every part of my body stemming from many traumatic falls, impacts, and breaks. Even as I write this I am laid up with a massive sprain and tendon bruise in my right ankle... not my first, and certainly not my last.

Now, this is not some "woe is me" story. For the most part, I try and live normally. I don't widely publicize my issues, and I don't demand others make take special care around me. From a very young age I realized that how people treated me hinged on how I reacted, and over the years I have seen my fair share of the drama queens and martyrs. This blog will not be that, and if it becomes so, someone please slap me. I don't "suffer" from my disorder. I live with it, and will hopefully do so with some sense of decorum until it finally beats me down. That being said, I will be honest, which will mean there will be times I talk about struggles, and hard times, and ugliness, but that's not what this blog will be about.

 In talking with others with EDS patients over the seventeen years I've been diagnosed, I realized I have a sort of odd perspective on the condition. Most of what I have to say is not what people will want to hear, but that has never kept me from saying things before, and it won't now.

That's what this story is about

The view from one broken doll to the others, and anyone else who stumbles along, on our own Island of Misfit Toys.

~Heather~