Climb on?

I went into my appointment with Dr. C yesterday with just one objective: get approval to start rock climbing.

I was first introduced to climbing last fall via my roommate. We are blessed with a huge rock wall and bouldering area here at Calvin. Around one night a week, all year long, I went climbing. I grew stronger and fell more in love with it. The huge sense of strength and power continued to bring me back. I was able to challenge myself with the continually changing routes. It certainly isn’t easy, especially with Ehlers-Danlos, but I made it work. The minor (and one majorish) injuries were worth it.

Unfortunately, I didn’t get to the wall much this last semester. My eating disorder played a huge part in this. When I wasn’t isolating, I usually felt too weak to climb. I still pushed myself when I probably shouldn’t have. This leached some of the fun away from an activity I enjoyed so much.

I’m not in a perfect or great place now, but I am more than mentally ready to tackle climbing again. I crave another way that I can appreciate my body and have fun with friends. I was relatively optimistic heading into my appointment. Honestly, I shouldn’t have been, not at all. I am better than the end of less fall. I am off medical leave. I am handling the semester thus far. I am not, however, at a healthy enough place to take on such a physically demanding task.

I grew the courage to ask for Dr. C’s approval towards the end of my appointment, to which she answered, “Absolutely not,” in a solemn tone. I immediately questioned why and hoped for a compromise. Her concern is my heart. I am not allowed to belay (hold the hope taught as your partner climbs) because she is afraid I will pass out and put someone else’s life on the line. While not ideal, I could technically still climb but need to have one other person belay my partner. That idea lasted for about two seconds before she gave her reasons why I cannot climb. One is that I would pass out at some point during my climb. Assuming I had an experienced and focused belayer, I would be okay. More serious than this, she believes there is a chance that I could collapse or even have a heart attack. If that were the case there isn’t any guarantee someone would be able to help  or even resuscitate me in time to prevent serious damage. Minor issues with climbing include broken bones (due to possible osteoporosis/penia with my ED), dislocations/subluxations (thanks EDS), and in general injuries related to the way I am inadequately nourishing my body.

I’ll admit, I do understand some of her worries. It isn’t a great idea for me to try this without following my meal plan. If I was restricting that much I probably would be too weak to even hoist myself up the wall. It’s happened before. I don’t agree with most of the heart stuff. I frequently get dizzy and sometimes feel like I’ll pass out. This mainly occurs if I’m going from sitting or lying to standing too fast, or when I am not hydrated. I could easily be careful enough to prevent this. There is no way my heart is “bad” enough to cause me to collapse or worse. I have no special restrictions otherwise for the abnormality. Mainly I just need to ensure I hydrate and feed my body. Easier said than done, but something I would work on the days I climb.

Part of the reason she is so worried about my heart is because she believes I may have Marfan Syndrome. I am missing nearly all of the markers minus my PE, hypermobility, and vision (eg: not tall, no long and skinny limbs/feet/fingers/etc, no mitral valve prolapse or aortic root dilation, none of the facial features, lack of family history). If I did have it there would be an increased risk for multiple heart conditions much more severe than what I am dealing with currently. I still need to wait until I see my pediatric surgeon in a few weeks (more on that soon), but I can almost guarantee he will rule it out. Once that happens I may be able to negotiate with Dr. C again. Side note: I’m looking forward to picking his brain on EDS and hopefully, maybe getting referred to someone who actually gets it.

As much as I disagree and discount her concerns, I will listen and resist rock climbing for now. The tone she used scared me. We have spent two months now talking about my heart and how imperative it is that I start nourishing my body to prevent damage in the future. I can’t easily forget or play my symptoms off as absolutely nothing no matter how hard I try. It isn’t normal for your heart rate to increase 30 bpm when standing and as much or more practicing gentle yoga. I shouldn’t, at 21, be plagued with symptoms, an abnormal echo, and worry. And yet, here I am.

This conversation we had is about far more than just rock climbing. Her goal isn’t for me to increase my food intake so I can have her blessing to get back on the wall. This is about taking care of myself. If for nothing else, I need to repair any of the damage I’ve caused before it gets any worse.

I didn’t get the answer I had hoped for. I don’t agree with some of Dr. C’s reasoning. I am still resistant, making excuses, and defying her (and everyone else’s) requests. I have started to realize the bigger picture here. That’s a step in the right direction, one I don’t want to take, but a step nevertheless. One conversation at a time, I am getting there, even if it means getting motivated about renewing my rock wall privileges.

 

Ehlers-Danlos Syndrome: the beginning.

This is the other ED(S) that has affected me far before I ever had eating disorder thoughts or behaviors. No two people with EDS are the same. I am telling my story.

“Ehlers-Danlos syndrome is a group of disorders that affect the connective tissues that support the skin, bones, blood vessels, and many other organs and tissues. Defects in connective tissues cause the signs and symptoms of Ehlers-Danlos syndrome, which vary from mildly loose joints to life-threatening complications.” – Genetics Home Reference

Growing up, there were many peculiarities that never quite added up. From birth I had pectus excavatum (learn more about that here). We never found any answers as to what could cause or be related to it. My parents always considered me the clumsy, accident-prone child. I can’t put a number to the x-rays I’ve had because we were so certain I had broken my arm, wrist, foot, etc. I was constantly injuring myself. I would trip over things, fall, and run into just about everything. There was always pain, from minor tweaks to barely being able to move the affected joint/limb.

By the time I’d had a few negative x-rays within a year, my parents and doctor both became skeptical. They thought I was a hypochondriac or exaggerating for attention. I felt extreme guilt and started believing that maybe it was all in my head.

Soccer was my love for 10 years. Playing such a highly physical contact sport beat up my body. I never had less than 5 large bruises (and numerous smaller ones) at once in various parts of my body. At the time, I attributed it to soccer even though my teammates didn’t have near as many. Along with bruising came sprains and general joint pain, ranging from mild to causing me to limp or miss games. A new symptom and diagnosis came to light as I entered late elementary school: snapping hip syndrome. Being a kid I thought is was so cool to show/freak out people with how my hip did weird things. This made soccer and other activities painful. I had to take special care not to favor my right leg at all.

My most telltale symptom of EDS that everyone excused was my “double-jointedness.”(not actually a thing if anyone was wondering) My ankles, elbows, wrists, hip, fingers, shoulders, and knees all were affected in some way. Most were just hyperextensive, but for the rest it led to instability in the joint. I felt awesome to have these different party tricks to show others. It was this quirk I had that was special. I didn’t realize what would come from my stretchy joints.

Early middle school began with neuropathy that has never ended. The details are a bit fuzzy, but one day I hit my outstretched forearm while walking off the bus. There was a pop, then pain. Fast forward a few days and I’m dealing with sharp, burning, radiating pain all along my right forearm. Numbness and weakness followed as well. You could cut a line to exactly where it ended, all along the pinky side to ring finger, which should have been a clue as to its origin. Naturally we go to the doctor, he does an x-ray, finds nothing, and then sends me to an orthopedist. Long story short, I finally get diagnosed with cubital tunnel/ulnar nerve entrapment/ulnar neuropathy. This doctor really had no clue about EDS or anything but did discover my nerve problem was secondary to the elbow hyperextension. My nerve is entrapped which then leads to all of the nasty symptoms I have. Looking back, that “pop” I originally felt was most likely a subluxation which happened to disrupt my nerve.

knew there was something wrong with me. Everyone else saw the girl who was accident-prone, extra flexible in weird ways, had those random chronic joint issues. What I felt was much different. I’d gotten past the stage of thinking this was all fun and games. I was in pain every day, although mostly minor. My issues didn’t make sense given family history or in comparison to friends my age. I was injured more often, from seemingly small instances, and often had residual pain far after. The bruising was pretty extreme as well.

I stumbled upon Ehlers-Danlos Syndrome one day as I was searching for someone else like me. I felt there was a reason for what I was going trough and that it didn’t all happen to be occurring together. I actually was just looking for a link between my PE and anything else because it’s relatively rare for women. EDS-HT came up and suddenly I could give this a name.

The more I read (research, not Dr. Google), I could see how the symptoms I’d set out to name and then some fit into the EDS – Hypermobility Type diagnosis.

  • hyperextensive joints
  • instability in the elbows, wrists, ankles, hip, shoulders
  • ribs that move, sublux, and dislocate with pain
  • snapping hip syndrome
  • pectus excavatum
  • IBS- irritable bowel syndrome
  • chronic migraines
  • proprioreceptor issues – hence the falling, running into things, etc
  • easy bruising
  • injuries, slow healing, pain
  • questionable POTS

I still have never been to an EDS specialist or even a doctor who knows much of anything other than symptoms and basic diagnostics, but either way I live with this. The name means knowing the reason behind my struggle. I’m not making this up or crazy, it’s just my faulty collagen.

It has only gotten worse over time, but even now EDS is not gravely impacting my life. I am mobile, independent, and my pain is manageable. I sometimes find it hard to even say I have Ehlers-Danlos simply because I don’t have a severe case. I am writing here because despite that, I do struggle. I know there are others like me as well. I want to share where I am now and what my future will look like. This is a part of me and my story, however small it may be.