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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On healing – 2 weeks minus 2 days

I’m almost two weeks out from surgery. Things have been going great. I have my cast. I have the medications I need for pain, for muscle spasms, and for nausea. I have been following instructions: staying off of it completely, and exclusively relying on the crutches to get me around. I have been elevating whenever I can. I do not get my cast wet. I do not overdo it.

I noticed a few days ago that the one of my toes is completely numb. I assume it’s from the incision and needing to cut through a nerve. It’s a weird feeling, but nothing I didn’t expect. The feeling could come back, or it may not. It may partially return; I have no idea. I just need to wait and see.

I have noticed a few other things lately that I have been brushing off as “normal” and as me overreacting. This afternoon, however, I noticed something that caused me to turn around, sit back down on the couch, and call the doctor: two of my toes were extremely red and hot, and I was having burning in the area of two of my incisions and a deep throbbing in my ankle joint. Because I didn’t call until 4:15pm and the office closes at 4:30 (I have impeccable timing), I have an appointment for 8:45 tomorrow morning. I have a feeling they’ll be a) removing my sutures and b) replacing my cast.

After the last time I had surgery when I had an infection, I’m beyond terrified that it will happen again. I’m trying to be as positive as I can be, but I seriously don’t know what is going on. I don’t think it’s supposed to feel like it does. I guess we’ll see tomorrow.

One thing I never mentioned last week when I posted were the difficulties I have been having being as hands-off as I have needed to be. Because I am unable to do most things that require me to walk or to be on my feet at all, I have not been able to help out around the house as much as I would like, and I am unable to care for munchkin as I have done since he was born. It’s incredibly difficult to not bawl my eyes out every single time something needs to be done that I can’t do watch my husband do all the major things around the house and not feel incredibly useless as if I’m leaving all the crap jobs work for him to do. I feel horrible, and I keep apologizing, and I think it’s driving him nuts; I’ve stopped as much as I can, until I lose my shit again and start sobbing and then I apologize again and again until I feel incredibly badly about something that has gone wrong or something I used to exclusively do. It’s tough. I am having a really hard time being so hands-off. I keep losing my shit, and it drives me crazy. Additionally, I can’t drive – which means that every single time that I need to go to the doctor, my husband has to bring me. And munchkin has been sick a lot the last few weeks – the week I had surgery (surgery was a Friday), he was out sick from school Tuesday, Wednesday, and Thursday, and then Friday he was with my parents. Last week he was sent home by 9am on Friday. This week he was sent home sick today. Because he has been out, my husband has also had to be out because I can’t watch munchkin myself. I can’t pick him up out of his crib when I need to, I can’t put him into his highchair when I need to, I can’t cook him food, I can’t really do all too much for him. So for every day that munchkin is not in school, we have to pay as if he is there – but my husband also can’t work. It’s the most annoying thing in the world, right now. It’s incredibly frustrating.

So this healing thing is obnoxious and frustrating and nowhere near a barrel of laughs; I’m just waiting for the next can of worms to open up. Not impressed, and we’ll see. Maybe that other shoe won’t drop after all. I just need to take it one day at a time. One.Day.at.a.Time.

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.

I always forget…

This time last year I was 6.5 months pregnant. One of the benefits of being pregnant was that, though I was affected by the heat and humidity because I was already baking, I was not affected the way I normally am: my joints didn’t offer me a lick of problems.

Fast forward a year, and this handsome little man…

The humidity is killing me. My hands and fingers are aching more than ever, and I just want to go home and sleep. I’m tired. I’m achy. I always said I wouldn’t use this as an area to complain. I’m not; I’m just stating a fact.

The humidity tends to exacerbate the pain I feel from Fibromyalgia and Ehlers Danlos Syndrome (Hypermobility), and not much will help completely. Working in an air-conditioned environment helps, and having the house stay nice and cool is also a huge benefit. A dehumidifier adds to the comfort as well. However, dry heat is the best solution. I’m not moving to Arizona, though.

Two summers ago I found a decent solution to alleviating some of the pain; I’ll be doing it again, and hope I can keep it up for good this time. I will be going gluten free. It worked then, it will (hopefully) work again. I would rather not live on painkillers and other medications; I was able to cut down to just my heartburn medication, and have stayed on just that for the majority of the time. I’m hoping the absence of gluten in my diet will keep my pain at bay, or at least subdue it. The fire can go away, thanks.