I am a runner… but only in my dreams.

I have always wanted to run.

I’ve wanted to be a runner.

To outsiders, it appears to be something of a brotherhood… to insiders, well, I have no idea – I’m not on the inside.

I dream of running.

Literally. I regularly have dreams that I can run longer distances (I’ll run miles – long miles – and not be winded – and make it the whole distance – without hurting).

I bought a jogging stroller shortly after munchkin man was born, and fully intended to use it. I had plans to complete the C25K program, and seriously, honestly thought I would do it.

I checked in with my PT, whose response infuriated me, yet motivated at the same time: “Are you CRAZY???”

Then, just a few weeks ago, reality set in.

I’ll never be a runner; I’ll never run that 5k.

I’m realizing that, as I get older, my joints are a lot less stable than they were even a year ago.

I dislocated my wrist closing the car door.

I dislocated a pinky (in two different places) putting on Munchkin Man’s coat.

I dislocated my jaw eating.

I know that there will be those people that will read this and think, “she’s just lazy. why doesn’t she exercise? why doesn’t she make it her goal to run that 5k and, well, just DO it? why doesn’t she make herself stronger, make her joints more stable?”

It’s not that easy.

For me, exercise = pain.

For me, a lot of the time, exercise = injury.

Also – people with EDS are believed to have decreased muscle tone, which means that it is difficult to keep things in place (even more than it already is).

EDS is like that. I was given my “diagnosis,” which consisted of the rheumatologist writing the phrase “Ehlers Danlos Syndrome Type III” on a piece of paper, handing it to me, telling me to do some research, and walking out the door. When I requested my “notes” from this office visit (“Ehlers Danlos Type III, Hypermobility, if pain, then injury. Be careful.”), I was surprised – he hadn’t given me much information, but what he had given me, finally, was an answer. I had always known that there was something wrong, but of course, in the back of my mind I thought it was all in my head. I wondered if I was a hypochondriac, if I was just over-sensitive. But this was eye-opening. There is a lot of joint instability, pain, injury, and therefore uncertainty with this condition. I didn’t realize just how difficult it would be to find a good doctor that could explain to me what everything meant (EDS is a connective tissue disorder – the connective tissue I have contains damaged or incomplete collagen, and that’s irreversible). I didn’t know what it would take to find a doctor that was willing to educate him- or herself to know how best to treat me… I’m still looking for a good primary care doctor to take care of my everyday needs, someone that is willing to learn or that already knows about EDS.

After my quack diagnosis from the “if pain, then injury, be careful” doctor I went down to Boston for a second opinion (with direction after the fact that my primary care doctor would continue my treatment after I left). It was the right choice, because they were able to tell me what to watch out for, and how best to keep myself from hurting myself (splints and braces). Gentle exercise (walking and swimming), nothing high-impact. And best of all – one of the real reasons we went down to see the Geneticist in the first place – it was safe to have a baby. It would mean that I would be considered high-risk and I would need more close monitoring to be sure I wasn’t going into premature labor, but I would be able to carry a child.

We have had our (first) child; I had an uneventful pregnancy and carried to 39 weeks. Throughout my pregnancy, from week 13 through week 30, I was closely monitored to ensure I would not go into labor early; this meant monthly ultrasounds and extra genetic counseling. I got to see my baby more before he was even born, and I knew I was healthy and progressing normally.

One of the risks with EDS is the chance of passing it along to children; there is a 50% chance is passing it to my children because it is an autosomal dominant gene – you only need one copy to have the condition. It’s still early, but we will likely know by the time he is in early adolescence whether munchkin man also has EDS. Because of the nature of the beast, there’s no GOOD genetic test right now for type III, because the gene has not yet been isolated. The test is mediocre at best – a 50% chance of accuracy – and because it is still so new (and not yet very accurate), insurance won’t cover it. It’s rather expensive.

Growing up I was rather active – I played softball and soccer, and danced ballet (even making it en pointe for a full year before the pain in my knees made me stop – well, that and my orthopedist telling me that one day my knees would just go. Full disclosure – the orthopedist was right – they just started to give one day, walking across the road). Even at the height of all my activity, I was in constant pain and because I didn’t know any different, I thought it was normal. I pushed through it. I didn’t realize how much harm I was actually causing to my body. Since my senior year of high school I have had 4 joints operated on – both knees, my left shoulder, and my right ankle. Both knees were essentially rearranged and fixed to make them more stable (they no longer give out with no warning); my left shoulder was repaired after a fall, though it was not successful; my right ankle was repaired after I turned it standing (see this, this, this, this, and this for details). I still have extensive pain in all of my joints – especially the surgically-modified ones – and my hands are getting worse every day.

I love, love, love to crochet. I recently finished an afghan for my new niece (at the beginning of October), but because of the pain in my hands, have not yet started my next project. Due to the progressive nature of EDS, I shouldn’t be surprised; however, because I am still relatively unfamiliar with everything that comes along with this diagnosis, I know that I have a ton of research still to do before I understand it as much as I should. I recently picked up this book by Dr. Brad Tinkle, which multiple people have recommended to me. It should be arriving soon.

The pain in my hands is exacerbated by the fact that I sit at a computer all day; I also enjoy writing (with a pen and paper) and do it when I can. I keep a journal (both one for myself and one for L), and hand-write each. Because of the pain that keeps increasing, I notice more and more how much my fingers hyper-extend. I try not to let them, but it’s rather difficult. I noticed on my drive home last night that even while driving they extend in ways they shouldn’t – in ways that cause me intense pain. I have been looking into these – they keep fingers from bending in ways they shouldn’t – and have schedule appointments with an occupational and physical therapist; she was actually the one that pointed me in the direction of rheumatology in the first place, and suggested I find out if I did in fact have increased hypermobility. Hopefully she will be able to point me in the right direction of things I need to do to ensure that I don’t hurt myself more, and perhaps even help stabilize my hands and fingers.

I will never be a runner. I will never dance ballet again. I will never be able to play basketball (not that I ever could anyway!), or climb a mountain. It’s not recommended, it’s not smart, and the amount of increased pain and daily difficulties it causes me is immense. I apparently hide it well. I’m lucky – I have a very, very supportive husband. He gets it. He sees me living with it day in and day out – and does not try to push me in ways that he knows would hurt me.

I may love the idea of running, but I will never, ever BE a runner… unless you count running in my dreams.

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Nostalgia

Paris has always held a special place in my heart: the lights, the language, the romance of it all. Even before I knew what most of it was, I loved anything French – pastries, berets, anything that was typically French.

I spent most of my childhood listening to my mother, her siblings, and my grandmother – her mother – speak French when my sisters or I were around. It was their way of communicating over us – we had no idea what was being said. Hearing the melodic flowing of sounds made me want to learn the language, if only to know what they were saying. It was my first link to anything French, anything Parisian, and I loved it.

Once I entered junior high – 7th grade – I had my first opportunity to take French classes. I loved it. Classes were relatively short – 45 minutes a day – but it was worth it. I picked it up relatively quickly, and continued through high school. I would read anything that referred to Paris or to France, however remote the reference. I lived for those escapes into the country, the city of my dreams, but never thought I would see it firsthand.

My first year of college, I took a semester of conversational French. I got okay – not great, definitely not fluent. But it continued my knowledge of the language. That semester I decided to change my major from English to Biology; at that point, I knew that I would no longer be able to take any further French courses. I had taken 6.5 years of the language, and I could hold a decent conversation. I enjoyed speaking in French, and luckily found that the French Club at my college took trips to Montréal and to Québec City on a regular basis (one per semester). It wasn’t France, but it was an opportunity to speak the language in a foreign place, and a chance to travel a little bit.

My sophomore year, I was still a part of the French club, and had since enjoyed two trips to Québec City, and one to Montréal. The first semester of my sophomore year was difficult – I was taking multiple science courses and a math course, in addition to two other required classes. I had no options for any additional French class. That fall, a friend mentioned that there was a meeting she wanted to attend for the study abroad program. It was something that I had never considered, but I decided to go with her, just to lend support.

I left the meeting determined to spend the following spring in France.

The only difficulty would be in convincing my parents that it would be a good opportunity, that I would be fine, that it would be worth it.

One weekend in the fall of 2002, I went back home. I had been thinking about how best to approach my parents, but I didn’t have the guts to do it. I finally cornered my parents in the laundry room, and told them that I wanted to spend the next semester in France. I had the paperwork, I had the information, I had the details. It wouldn’t cost anything extra (except spending money for traveling), and my loans and scholarships would cover everything; I even would get a stipend for food. My parents gave a collective sigh of relief – I later found out that they had caught on to my following them around the house (which I didn’t realize I had even been doing), and thought that I was going to tell them that I was pregnant. The desire to spend a semester abroad was a much easier discussion to have.

I left for France in early January 2003. January 3. I spent 4 months with awesome people; we took classes, drank beer, explored Le Mans, traveled Europe, and ate wonderful food. I saw Paris, London, Rome, Amsterdam, and multiple parts of Ireland, and it wasn’t enough.

Paris was astounding. The lights, the sounds, the smells, the food – it was all as I had hoped, had expected, had dreamed of for so long – and it was more. I enjoyed the touristy areas more than the less-populated areas, mainly because I had a mere 4 days in Paris, and who can see all of Paris in 4 days? Certainly not I. I saw some things that I will return to (La Tour Eiffel, L’Arc de Triomphe, Montmartre, La Cathédrale Notre Dame, La Basilique du Sacré Coeur de Montmartre), and some that I won’t (Les Catacombs). I would love the opportunity to walk through the streets of Paris with no destination, no deadlines, no need to be somewhere by a certain time.

I wanted more time; I wanted to travel more; I wanted to see more of the world. I had originally planned to extend my stay, but in early April, my grandfather fell and his health took a severe downturn. Instead, I left with the group on April 28th, the original departure date.

It has been just over 10 years now since I left France. I haven’t been back since (though I was able to score incredibly cheap non-stop flights to London from Boston, and spent New Year 2004-2005 in London with my mother); I haven’t been back to Québec City or Montréal, either. I transferred schools (and changed my major again) when I returned from studying abroad, and squeezed a full degree program into two years. I had zero time for French courses (though the school I ended up at didn’t have them anyway, just French 101 and 102 – the basics).

My mother doesn’t speak French anymore. My grandmother passed away 19 years ago, my mother’s brother – the one she spoke French with the most – passed away 17 years ago. There’s nobody for her to speak French with, and she has forgotten most of it.

Life has changed, has interfered.

I no longer speak much French; I have nobody to speak with. I am currently using an app to attempt to brush up on some of my vocabulary, but it’s not the same. I just don’t remember much of the language.

What had always brought me such joy now leads to such an intense longing, such heartache. I watched Midnight in Paris recently, not for the first time. I had purchased it unseen, and I have since watched it numerous times. It is one of my favorites. It reminds me that life is short, but there is such history. Where we walk, many others have walked in the past. Where we live, others have lived. Where we love, others have loved. We will never be the first to do something, nor will we be the last. But watching Midnight in Paris has reminded me that because of choices I have made – choices I would not change for the world – I will not be returning to Paris anytime soon.

I love Paris.

I crave Paris.

But I can’t have Paris.

I will continue to watch Paris in television shows and movies, and read of it in novels. I will continue to admire from afar, and someday… someday, I will return.

Do all therapists laugh at their patients’ problems?

I wrote last time about my debilitating anxiety. About a week ago, I woke up from a horrid nightmare. I woke up just before I was murdered. I couldn’t think about it. I couldn’t not think about it. I couldn’t go back to sleep. I woke up my husband, and just tried to stop thinking about it. I didn’t want to talk about it, but needed to talk, so my mind would stop going there. It’s still there in my head. I can still remember it. It’s terrifying.

I’ve always had very vivid dreams. I don’t know why, but I don’t always like it. Sometimes  when they’re good dreams, I don’t mind them; this time, it sucked. I was trying to hide. I was trying to run. I couldn’t do either. I woke up just before I was caught and murdered. Even in my dream I knew what was coming.

I have also always had issues with friends, and with adjusting to new places. When I was in college, I started seeing a therapist – psychologist – something. Whatever you want to call her. She worked for the school, and Liz was going to help me. I hoped. After seeing her a few times and telling her all the things I was concerned about, what bothered me, the things that I was dealing with, and EVERY.SINGLE.TIME. having her laugh while she was talking to me, I couldn’t deal with it. I was seeing her because I needed help working through my issues. Laughing at me while I was telling her how much things hurt didn’t help me. It hurt me more. So I stopped going.

Fast forward a couple years – college is done, I am living in Dover with my now-husband. I started back seeing someone for the anxiety again, and ended up seeing two different people – and was thoroughly insulted by one, and laughed at by the other. Do all therapists laugh when their patients are telling them their biggest fears, their concerns, worries, problems? It was happening again, and I was mortified. Maybe it was me. Maybe it IS me. Maybe I’m just more concerned than I need to be with the issues I THINK I have.

Then there was the one that asked if I was suicidal – and proceeded to answer her own question – as she laughed. “No, you’re too afraid of death – hahahahaha – you’d never kill yourself. Hahahahaha.” I never answered her question – it didn’t matter to her that I’ve never been suicidal. She didn’t even let me answer her.

So though I’m having trouble getting past my fear of death and dying without professional help, I’m terrified to start seeing a therapist for fear of their reactions. I don’t like that I can’t trust someone I’m supposed to – especially with something as fragile as my fears. I would love to be able to find that help I could definitely use. It has been 4 years or so since I last talked to a professional, and though I think it’s time to do it again, I’m worried that a) I’m going to be laughed at again, and b) it’s not going to be worth it. Maybe once I get the ankle under control I’ll venture back in that direction.

Have you ever had someone you trusted laugh in your face when you were spilling your guts to them?

Twenty thirteen.

I have a post I started a few months ago that I have been slowly adding to. I’m hoping that by the weekend I’ll be able to publish it. It’s robust and detailed, but that is on purpose. I’m hoping I can get all the information I need to provide a convincing argument.

Here’s to more actively posting this new year. Here’s to more writing and less excuses… more focusing on my health than on my shortcomings… more family time than not.

It’s time to take hold of what is important to me and stop making excuses.

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Another day…

Another few days have passed without a post, for which I apologize. I do have 7 or 8 posts started, and I will finish them. When, I don’t know; but hopefully soon. Some are comments on the news, others are topics I want to broach. But since the laptop died last week, I find it harder to update – when I get up to the bedroom, where the desktop is, I just want to sleep.

We’ll see how long it takes to get through these thoughts.

What gets in the way of you doing the things you want to do?