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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A belated birthday wish.

Munchkin man turned two last Thursday. I just… yeah. Still speechless over this fact. He is an amazing boy, such a joy. He is cuddly and loving and smart and silly and wow, does he keep us running. He’s always moving, always doing something. He is very self-aware, and loves his “kitty brother.” He gives awesome kisses and when we’re in the grocery store and I’m struggling with the self-scan checkout line and the register is misbehaving and one of the people has to keep coming over to allow me to continue to ring up our groceries, he loves to pull on my arm and pull me in with both hands so he can just hug and hold on and not let go. I’m still in awe of the fact that he’s ours. I don’t need to give him back. I get to keep him. He’s ours. He’s half me, half hubby, and we don’t have to give him back. I had always dreamed of this day – the day that some little one would yell for me – “Mommy!!” – while I was still getting out of the shower in the morning, before it was time to get up, before the day had even begun – and I’d be happy and more-than-willing to go gather this sweet-smelling boy from his bed and kiss his still-warm cheeks and just live in the moment. I need to remember that he’s not little for long… to live in the moment. To enjoy the time we have while we have it, because, cliché or not, he’s only little once, and it won’t be for long. To put down the electronics and play with the trains and make silly pictures and paint without worrying about getting dirty and dig in the sandbox and splash in the “cuddles” – the puddles – because it makes him happy. This love I feel for someone so small, so tiny, yet oh-so-big in personality and generosity – he gives me his favorite train to play with! – and kindness and love – this love I feel is boundless. It is never-ending. It is amazing, and makes my heart pound and skip a beat… literally. Who knew that the dreams I had years, years ago, would come to fruition in such an amazing way? This boy stole my heart just over two years ago, and has relentlessly held onto it since – and I’m okay with that. He’s my little man, my sunshine, my “babyman,” my munchkin, my monkey. He is my world. Happy birthday, monkey man.

In a state of confusion

Life has been upside-down lately. Many things have changed significantly; many things are completely the same. Much like my almost-two-year-old, I’m used to order and crave structure.

Life is a roller coaster; I understand that. There should be ups and downs – without them, there would be too much monotony and frankly, life would be completely boring.

I like boring.

When life isn’t boring, I become stressed.

When I become stressed, I internalize my panic and nerves and worries and strife – and out come health issues.

Gluten sensitivity to the point that I need to consume a strict gluten-free diet.

Headaches so intense I can’t function well.

Depression.

Pain.

This roller coaster, it’s a jarring ride.

I have been able to buffer the “jarriness” of the ride with books, my crocheting, and my family. It’s difficult, but with the anticipation of my sister’s new baby arriving (any day now!!!!) and crazy workdays (I’m back working in the office – after 3.5 months of working at home, at the beginning of June I headed back in for my hour-long commute and am back in the office. Oh, and I changed my hours – I go in -and therefore get out- an hour earlier. Good in the long run, sucks getting up early) and stressful coworkers and too much craziness and not enough wine, well, it has been extra jarring.

When I’m going through a gluten sensitivity bout, I have extreme issues with consumption of anything containing wheat, barley, hops, and anything else in the category; I also get sick if I use a toaster to thaw my gluten free bread that has previously been used for gluten-filled bread. It doesn’t take much to make my insides want to just explode.

I had been exclusively gluten-free for about 3 months. A short bit ago, I realized that the “medicine” that I had been taking to help me consume gluten a little bit better (aka, eat gluten free but if I needed to be sure I didn’t get sick from cross-contamination, take two pills and call it good, and later, a box of macaroni and cheese or a calzone and some  onion rings – all full of gluten) had zero active ingredients. Zero. I decided to attempt some gluten, knowing that it was likely going to be absolutely no different than with the “medication” – and I was right. I had no adverse affects.

I started eating gluten again.

My stress level has not changed. Nothing in my life has changed to allow my stress level to decrease – things have actually gone in the opposite direction. My stress level is through the roof.

And my chronic pain is back. I woke up a few days ago and my hands were on fire. I actually started this post just over a week ago, but after typing all day at work, the last thing I want to do when I get home is type. I’m crocheting an afghan for my new niece, and that’s taking up all of my hand strength. That, and caring for an almost-two-year-old. When I stand up at work after sitting for a while, I can’t walk upright for a few moments – I look like an 80- or 90-year-old woman.

Life is crazy. Life is full of give-and-take, and making sacrifices.

As much as I love gluten, I believe that I need to make some (permanent) changes – I need to significantly reduce the amount of gluten I consume, and I need to regularly work out. I need to focus on my health, and I need to increase my strength and stamina. I am tired of always being tired, always being in pain, always needing to stop what I’m doing because my body won’t let me. I understand with EDS that I need to take it relatively easy on my joints, that there are some things I can’t do, but I need to make myself stronger. I just need to do it, and I need to do it now.

For my family.

For my sanity.

For me.

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.

On healing – one week out

***If you’re grossed out by incisions, don’t look at the photos. Or just skip this post. They’re not bad, but just a heads up.***

This past Friday, I had surgery on my ankle.

Surgery was a little different than we had expected – some things that were expected to be done were not done, some other things that were not expected to be done were done. I have an extra scar: two on the outside of my ankle, one on the inside of my ankle. More than expected.

But let me back up.

Friday morning we had to be at the hospital by 6:15. AM. Yes, I asked to clarify that when they told me the arrival time. Thursday night we had met my mother halfway between their house and ours – and she took munchkin back to their house, to watch him for the first weekend after surgery. It was a huge weight off of our shoulders. Friday we were up and out early – up at 445, out by 530. We’re not morning people, so it was impressive. We got to the hospital, and they said I was up first. They brought me back to the holding room, where I changed into the fashionable johnny and waited for what was next. They filled me in on the details – they were going to put in an IV for general anesthesia, but in addition to that, they were going to put in a nerve block – numb me below the knee along the nerve line. In addition to extra comfort immediately following surgery, the catheter for the nerve block would stay in for a couple days, giving me up to two to three days more of a numb leg. I was all for it.

I woke up after surgery, still a bit out of it, to find my leg looking like this:

My leg, post surgery, with catheter above the knee.

My leg, post surgery, with catheter above the knee.

I had no idea what had happened. I had no idea what was going on. I was very out of it. After a couple hours (I think? I was out of it!) of coming out of the anesthesia and getting used to the bulk of my leg – leg wrapped in gauze, topped with a splint, topped with more gauze, only to be topped with an ace wrap – we were released to go back home. In that couple hours, I have little memory of any conversations that I had or anything I was told. All I knew was that the parts of my ankle that needed to be repaired were in fact fixed, and there were no issues during surgery. That’s all that I needed to know.

One thing that I remember clearly is sticking with me, as it refers back to my previous concerns about this fixing it, but only temporarily – by fixing the extra thing that was found when the doctor opened up my ankle, he has reduced the chances of this happening again. And from what he said, the chances of it happening again were reduced significantly. It’s a huge sigh of relief there. Now I just have to make sure that it holds true.

After a weekend of recuperating, taking my painkillers every 4.5-5 hours, sleeping, and watching movies, my sister (the youngest of the four of us) and munchkin came home. I was so happy to see him. I got in a couple quick snuggles and he went to bed. Shortly after, sister C and I went to sleep as well. Monday munchkin went to school and J went to work; sister C and I watched movies (a really bad one that we only made it 20 minutes of the way through, and then two good ones), chatted, and just hung out. It was really relaxing, and was great to hang out with her. We don’t do it often enough.

Tuesday morning I had my followup with the doctor, and they had told me I would be getting a hard cast, though I had no idea if the difference in surgeries would be changing things, changing the plan. We went in, and they took off the wrap and the gauze, and I got my first good look at the incisions and the state of my ankle. I was excited to see it. A little swelling, which was to be expected – a lot of orange, from the iodine/betadine/whatever they used to keep my leg/ankle sterile – and three incisions, instead of just two.

Where they cleaned out the junk - arthroscopic entry.

Where they cleaned out the junk – arthroscopic entry.

Not too bad, but you can see I don’t have much of an ankle, due to the swelling.

The main incisions. Where everything else happened.

The main incisions. Where everything else happened.

They fixed the tendons and removed part of the muscle, which was causing most of the issues.

An overview - the yellow is antibiotic strips. Note the lack of an ankle.

An overview – the yellow is antibiotic strips. Note the lack of an ankle.

After the surprise at realizing I was only 4 days out from surgery because of how good my ankle looks, they stated that it’s obvious I’m staying off of my foot (duh) and following the doc’s orders to elevate (also duh). Seriously… why would anyone NOT follow directions to sit on one’s behind all day and just let the joint heal??? It’s the only smart thing to do, if I want my ankle to work correctly soon. So yeah. It all looked great, and I’m happy to hear that.

Once the poking and prodding was finished, they got me ready to put the cast on.

Note the angle my ankle was at. That was the angle I had been put at after surgery, and I hadn’t moved it. Not a smidge.

Then came the fun part. I had to get my ankle bent to 90* and turned slightly out. Turns out, it wouldn’t move much. I did what I could, but then the medical assistant had to finish it up. It hurt a bit – felt like I was trying to move my ankle through piles of sludge. Thick, concrete-y sludge.

Finally, we got my ankle where it needed to be, and it was casted up. I got blue. It was the only option. But blue is good.

Note the perty blue cast. And my orange toes.

Note the perty blue cast. And my orange toes.

This cast will be on for 2 weeks, and then it will be removed and I’ll be put back into a splint for another 3 weeks.

We took a detour on the way home for the best hot dogs in Maine – Flo’s. Yum. Luckily it wasn’t much of a detour, because I was in pain – we had to drive by it anyway.

That night, my in-laws came over with our nephew so that the boys could play together. Both boys were a bit put-off by the cast, but I think they were able to get over it when they autographed and colored it. They enjoyed that for sure.

autographed cast - lovely artwork!

autographed cast – lovely artwork!

I’m in the cast for two weeks, then back into a splint that will be able to be removed, at which point I will start physical therapy to get my range of motion back – currently, I have virtually zero. It was tough to be able to get my ankle bent to 90*, so I can’t imagine how it’s going to be after 2 more weeks of not being able to move my ankle at all. It’s frozen at this angle pretty well. But since this is the angle that the doc says will help me heal the best, so that’s what I’m doing.

I’m still going to have to stay off of it for the entire time I’m on the cast and in the splint, which will be a total of about 6 weeks. For that time, I need to use crutches. Another concern that I had had was the use of the crutches; last time I had surgery (3.5 years ago) I was 60lbs heavier, and couldn’t support my weight on the crutches. My shoulders couldn’t bear my weight. It was frustrating, it was obnoxious, it was annoying, and seriously – it was demoralizing. It was the heaviest I had ever been, and it was a daily reminder of my failings. Anyway. I have been using the crutches for a week – with absolutely no issues. No problems with my shoulders. No problems with my hands, or with my wrists. No issues climbing the stairs (backwards on my butt) –  last time, my shoulders dislocated. This time, nothing. It’s still early, I understand that – but after a week of absolutely no problems, I’m thrilled. And knocking on wood.

We have had a ton of help since I had surgery, and from the sounds of it, the extra help is going to continue. It’s amazing how awesome people have been. It’s awesome how much help we’ve had. People are amazing.

So far, so good. So far, no problems. So far, provided I keep up with the painkillers, I’m relatively pain-free. It’s good. It’s freeing. It’s a relief – and it’s motivating. I think that these last few pounds – once I can actually work out again, biking and walking – will be coming off sooner rather than later. And my ankle is healing. The turning won’t happen as frequently. It will be better. And it’s great.

How not to hurt yourself: a guide

It was late November or early December of this past year, and I was at work chatting at a friend’s desk. Chatting, standing, just like normal. My ankle turned, I cursed, and just continued on with my day. It hurt, yes, but it was nothing out of the ordinary; because of my Ehlers Danlos Syndrome (Hypermobility) (EDS), it happens often. I’m used to it by now. Fast-forward a few days, and my ankle is still bothering me (again, normal) but it’s more painful than normal. I purchased an ankle brace, and it seemed to help a bit. Fast-forward another few weeks or so. Ankle was feeling decent, and I was tired of wearing the brace, so I stopped. No issues.

Then the pain started. Again. With a vengeance. I can’t remember doing anything, so I’m going with re-irritation of the initial injury. Not impressed. Saw the doc, she suggested physical therapy and a RICE regimen. I asked if I should be in a walking boot, and she said it wasn’t worth the expense. I told  her I had one in the car – I already own one (from a past injury). She said absolutely, since I already have it – it was worth wearing it. We scheduled a follow-up for 4 weeks out, then went to schedule physical therapy. I started wearing the boot.

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That was January 25.

I had one physical therapy appointment, but because of the inflammation in my ankle we couldn’t do anything. It was a rather expensive icing session, and the physical therapist, who I have been seeing off and on for about 6 years, suggested I get a prescription for Prednisone to knock out some of the inflammation and pain. It did nothing.

Just a week later I’m in so much pain after running an errand that I’m in tears. It’s my right ankle, and though I have an hour commute, I had been driving in to work – not wearing the boot to drive, but putting it on when I get to work and then wearing it all day. That day when I ran out I was in and out of the stores quickly, but the pain was intense. When I got back to work, I called to schedule an appointment with the doc again; I was able to get in the next day. Doc recommended an MRI, which after much back-and-forth was scheduled for less than a week later, with the follow-up with a podiatrist almost two weeks after the MRI. Additionally, she suggested I stop driving; with the ability to work from home, I’m happy with the option to rest my ankle and not spend a fortune on gas for a couple weeks.

MRI went fine – I requested that the MRI report was sent to both the doctor’s office (standard) and directly to me, so that I could see what the issue was – see if I was imagining things as I was beginning to believe – and really get an idea of how badly I had injured myself. I received the report the Monday following the MRI (which was on a Thursday), and it stated that I had some swelling, and something called Sinus Tarsi Syndrome. I did my research, and it essentially said that I had simply turned my ankle one time too many. With such a report, I was comfortable with it – it would likely require an injection of some sort of corticosteroid, and I could mosey on my way.

I wish it had been that easy.

What the actual outcome is is so much more than Sinus Tarsi Syndrome – I actually ruptured two tendons – the Peroneus Longus and the Peroneus Brevis – and tore a ligament. There’s also some sort of debris in the front of my ankle – the doctor doesn’t know if it is bone fragments or scar tissue or fatty tissue (he equated it to chicken fat) – that will need to be cleaned out. So it will be a process. It will be a combination of arthroscopic (for the front) and open (for the tendon/ligament repair) surgery, so it will be rather extensive. I’m not looking forward to it. At all. I’m actually quite terrified.

The first three weeks after surgery I will be in a plaster cast, unable to weight-bear, unable to move my ankle. The three weeks following the cast will be spent in a splint – I’ll still be unable to weight-bear, but apparently will be able to start with range of motion and physical therapy. After that is a walking boot, and we’ll go from there. Of course, moving at whatever pace the healing will let me. I won’t be able to drive, which means I won’t be able to get to work. I have been lucky enough to be able to work from home for the last few weeks, and I should be able to do the same until I can get back into the office. I’m lucky to have a great work environment, great co-workers, and a great boss. It’s a relief to have one less thing to worry about. I just need to worry about the healing, and getting better.

Three and a half years ago I had my left knee operated on, and I ended up with an open wound, infection, and a long, arduous, painful healing process.  It was a horrible experience, and I hoped to never have surgery again. I was at my lowest point ever right after surgery – I spent most evenings sobbing my eyes out because I couldn’t deal with the pain, couldn’t deal with my shoulders dislocating every time I pulled myself up the stairs on my butt, couldn’t deal with the inability to be independent. I relied on my husband for EVERYTHING – I couldn’t put ANY weight on my foot, couldn’t shower on my own, couldn’t prepare my own meals.

I don’t want that to happen again, of course. I want it to be as smooth as a process as it could be. Of course.

There’s one big difference between last time and this time: little man. He’ll be 18 months old in a couple weeks, and he’s running circles around us already. He is an amazingly active boy, and loves to have us playing on the floor with him. One of his favorite things to do is to get a book and plop on the closest lap for that person to read to him – and then making the rounds to the next lap. He’s a whirling dervish  and this is going to be quite the experience. I love to be first and foremost the front-runner for munchkin’s care: I love to give him baths, I love to give him snuggles and smooches before bed. I love to get him jammied up and help him brush his little teeth and hair. I’m going to have to lean on my husband a lot more for the next couple months. We’re also incredibly lucky to have extremely supportive families. My husband’s family lives just down the road, and though my family is further away, they’re right here when we need them. It’s yet another weight off of our shoulders.

My main concern is that the surgery won’t actually prevent this from happening again; it’s only going to fix the issue for now. So yeah… I’m terrified that it’s going to happen again. And I’ll have to do the surgery all over again. I apparently should just figure out how to not hurt myself again.

That’s the key to everything: I need to figure out how to avoid hurting myself. When I was first diagnosed with EDS, the rheumatologist was real forthcoming: “if pain, then injury; be careful.” That was the extent of his guidance/notes/everything. I need to start wearing ankle braces ALL the time. I need to try and remember to keep BOTH feet on the floor and balanced, instead of keeping my weight on one foot more than the other. It’s time to start keeping myself in check. It’s time to start being careful. For me. For my munchkin. For my family.

Heartbreak and heartache

I was pointed in the direction of a news article this morning, in a nonchalant sort of way – “did you hear about the Conn grandmother? sickens me.” I went to msnbc, and this is what I found… I immediately cried my eyes out.

Now, I know things like this happen. I know it’s not right. I know it’s devastating to all involved, and seriously – nobody wants to know someone that this happens to. Why can’t we just fix it all? I feel some days like this country is running in circles, and like the safety that I counted on growing up is becoming less and less. I don’t always feel safe. Now that I have a little one, I worry about his safety probably more than I should. With an overactive imagination like I have, munchkin has been in the hospital 25 times, and has fallen off of the bike that he doesn’t even have yet.

I have been following along with the updates of a little boy named Tripp. Back in October, this precious little boy was playing at daycare when a tree limb fell on his head. He’s still in the hospital, fighting infections, fighting to live. He’s improving, but he will never be the same. My heart breaks for this family, and for all that they have and will go through. Their financial situation has been thrown into upheaval due to all of the medical bills, and because Tripp’s mom, Stacy, has been by his side from day one. They recently sold their house and purchased a new one, but of course, it needs a total overhaul so that it is Tripp-accessible. Thanks to a great foundation called Sunshine on a Ranney Day, their house will be made ready for them, just the way they need it to be.

It’s times like these that I am reminded of how lucky I am, and what a wonderful family I have. I don’t know what the future will bring; I don’t know what will happen 5, 10, 15 years down the road. I do know that I’m in a good place: I have a good job, I have a roof over my head, I have an amazing husband that supports me through everything – good, bad, ugly, stupid ankles; we have a beautiful boy that is wise beyond his years, and such a great heart. We have awesome parents that love their grandson and ignore us when they come over (which, honestly, is something I never imagined I would love – Mom, you were right. It is a great feeling to be ignored once in a while!!) because they’re enjoying playing with munchkin. We have great siblings that, though there are the occasional arguments, we know would do whatever we needed to get out of a bind. We have the ultimate support system.

We’re lucky. Very, very lucky.

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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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Let’s start anew…

Thanksgiving has come and gone. I’m not sure how or where. It was ripe with fun and family and everything that goes along with it. Traditions are a biggie for me, and though I was hoping to start a new one this year of eating yummy breakfast and watching the Macy’s Thanksgiving Day Parade, things got in the way. I’m hoping that next year will be a little more sane and we will be able to take in the wide variety of floats and balloons.

Munchkin man enjoyed socializing with extended family, and we enjoyed watching him try new foods and run around the houses. He really is quite a ham, and is definitely not shy.

I have fallen off of the weight-loss wagon, but despite doing so, I have stayed at a relatively stable weight. I’m okay with this – I would rather stay flat than gain. I have a newfound motivation as we head into the Christmas season, so hopefully I am able to carry that motivation with me and it doesn’t find the nearest open window.

I started writing for NaNoWriMo and failed miserably. My first attempt got me to about 675 words, but I stopped caring about the story and had no real desire to flesh it out. So I changed everything, and got to about 350 words. Again, I didn’t really care about making the time to write, so I stopped. I definitely didn’t get to the goal word-count; maybe next year.

Tired, happy, baby kisses.

Welp. My baby man turned ONE a couple weeks ago.

He started out like this.

Moved to this.

And now is this.

I don’t know how time has gone by so quickly.

It’s surreal, and somewhat bittersweet. I love the boy he has become, so inquisitive, so smart. He’s always asking “What’s that?” and pointing at things. I think it’s a preclude to him asking “Why?” at everything. I’m okay with that. It means he’s learning.

Pre-baby-man: our lives were relatively quiet; we would spend our evenings reading or playing video games, occasionally meeting up with friends. We’re both home-bodies, so we were perfectly content not doing much outside of the house. Our evenings were quiet, and we were okay with that.

After baby-man: we don’t often go out. Our evenings are only quiet after 7:45pm, which is the bedtime of said baby-man. We eat dinner and play, and then after he has bathtime, he sleeps. He sleeps easily and well. His latest thing is attempting to dive into the crib so he can lay down and snuggle his bear, waiting for his blanket to cover him, ready to sleep.

But I digress.

After baby-man: we don’t often go out. It’s actually rather rare. But we’re okay with that. (See Pre-baby-man for explanation.) We still read or catch up on our shows (though “catch up” is now the operative term; it’s rare that we catch them on the night – or the night after, to be honest – they originally air), and we have our together-time. It’s different, but a good different.

“Logan, come give Momma kisses.” Baby-man toddles over (yes, toddles – he’s walking!), open-mouthed and ready to kiss Momma. Usually a big grin is hulking behind the open-mouthed kisser, and after the “kiss,” he runs away. Yes, he runs, too.

The first year has been amazing. It has been crazy (we bought our first house in January), wonderful, and difficult. But who said raising a child was easy??

We have an amazing little boy, and a fabulous family. We’re incredibly happy, smooshed in there with a whole lotta tired. But it’s a good tired.

And we wouldn’t have it any other way.

Logan and Momma pumpkin picking!

Logan and Daddy watching the Patriots!

Reading cards and opening presents at Logan’s birthday party!