Big zebras don’t cry

As I have mentioned in previous posts, my EDS pain post partum has been fairly intense. I’ve written about the pain in my shoulders, but really, my whole body has been a bit of a mess. I guess this should be no surprise, since I did just have a baby 7 weeks ago, but I have been feeling as though it is so much more than that. My wonderful doctor has been great in these past few weeks about wanting to help manage my pain, and referred me back to physical therapy, after giving me a few meds for pain (they ARE rated safe for breast feeding… as safe as you can get) and advice on baby wearing. One of the meds my doctor gave me is one that I have taken before, another one is new; she asked me if I needed a refill on one that she had given me right after birth for post partum pain, but I thought I would be fine, so I said no. I was oh, so wrong. The two meds she gave me were barely touching the pain on their own. It was brutal; so yesterday, when I saw her for a follow up, I was going back and forth in my head as to whether or not I should ask her for a refill on it. I was so scared to ask her. See… we zebras have a high pain tolerance. We don’t really cry when we get hurt, and usually we just laugh at the monotony of the situation because for someone who has EDS, “getting hurt”  isn’t really news; chances are, we’ve felt that pain before. That’s why, when walking into my doctor’s office, I was scared to ask her for a refill on that one medication. I felt like I should be crying or showing one of the standard “faces of pain” – you know… the little chart on the walls in hospitals and doctor’s offices that help them determine how much pain you’re in –  like a normal person. But I don’t really cry when I hurt. In fact, I don’t usually even show it in my facial expressions when I’m in pain. If I do cry when I hurt, it’s more from the frustration and/or exhaustion caused by more pain in my life. Again. So because I don’t really show pain emotionally or through my facial expressions, there was that fear that doc would assume that I was just a drug seeker trying to get my “fix”. (I can’t tell you how many times I have been told that ibuprofen or tylenol should “cover it”. And if that doesn’t work, I should “be used to the pain by now, right?”. Sure, sure. Asshat. – excuse my language.) Thankfully, my doctor didn’t even go there! I guess that’s one advantage of (for the first time in my life) having a doctor who believes me and believes (and understands) my pain. Instead of making me feel badly and telling me that I should get used to it or get over it, the good ol’ doc asked me a question I never expected to hear! “Okay! So… how many do you think you would use in a year? I mean… that’s just much easier, right?” I was flabbergasted! But walking out of there knowing that I have a doctor on my side, who believes me and trusts that I really do know my body and my pain… that feeling was priceless.

Now… being a mommy puts a whole new spin on this whole pain and pain management situation, especially because it involves pain medication. As a mommy (and I’m sure all of the daddy zebras can relate), having a condition that involves chronic pain is HIGHLY inconvenient. This is mostly because there is just no time to be in pain or focus on damaged joints. Your baby (or in many of my EDS friends’ cases, babIES) need you! Right now, my biggest concern is nursing. While my doctor has assured me that all of the medication I am taking is safe for baby C, I do know that the FDA has stated that no medication has actually been determined to be safe during pregnancy, so my brain tells me that the same goes for breastfeeding. So, if you’re thinking about it, I don’t need the lecture. I already feel guilty enough for giving my needs a priority, but I’m realizing that I AM important too. I don’t need you to judge me or make me feel worse, so keep it to yourself. While breastfeeding and caring for my one baby is my concern, so many of my friends have several babies (granted, they are mostly bigger “babies”).

These friends of mine are facing so much more than just the daily struggle with their own pain; they have to worry about the struggle with pain that their children have to face. Many (if not most) of my EDS friends have children who also have EDS and/or other disorders. Because EDS appears to be genetic – not all families are able to trace it back to diagnoses in previous generations – I definitely worry constantly that my own baby could inherit POTS or EDS or both from me. For my friends, this worry is in their faces every day! It’s their reality. I can’t even handle it when my little boy cries just because he wants his binky… I can’t imagine what it would be like to see him go through the same pain that I do. These parents put their pain on the back burner, and I have noticed that it doesn’t come back to the surface until it’s too late to be proactive. Many, many times, I have seen these friends of mine literally get knocked on their asses.

Let me make things clear; mommies and daddies are not the only ones who push their pain down. Oh, no. All zebras do it. I mean, come on, no one believes in an illness that can’t be seen. Now, I love old people – Haha! Maybe that sounds weird. I hope where I’m going with this doesn’t offend too many, but if it does… well, just don’t read my blog anymore. Whatever. Let me continue… I love old people, but they usually are the ones to say the things that drive me craziest! I shall explain. Old people want us to appreciate and enjoy our youth. They are wiser and more experienced, and they know what’s coming for us, even if we don’t. Seriously… chances are that they really have “been there, done that”! This is something that I sincerely understand. But the thing that drives me the craziest; the one thing that sort of pierces my heart and makes me wanna slap an old lady is when I hear, “Oh, you healthy young people with your youth! You just can’t understand the aches and pains of us old people” or “Well… you don’t know what it’s like. You’re young and healthy!” It sincerely takes everything I have in me not to grab that person and shake him or her and scream “I hurt every day of my life! Healthy, my eye! I would love to only have aches and pains in my ‘golden years’! But I’m not so lucky!” There are so many times that I want to scream about the pain that my friends are in, because let’s face it, I’m one of the lucky ones! I can still get around on my own; I can still leave my house and work. Many of my friends just don’t get to do that.

But big Zebras don’t cry.

So I keep my mouth shut and silently curse the “healthy young people” with all of their youthfulness and whatnot. 😉

Let’s talk about physical therapy.

Today was my first session back in physical therapy with my wonderful, wonderful physical therapist. This woman worked so hard with me throughout my pregnancy to make sure that I was strengthening weak ligaments without hurting myself more, and really worked to understand the relationship between EDS and my ligaments and my pregnancy. So, today I walked in, hoping that I had done enough work to avoid throwing things off TOO much through childbirth and in these weeks post partum. However, my pain told me that reality was likely the opposite. And the latter was true. As it turns out baby C “did a number on ya!” Yeah… I thought so. On one hand, I was bummed to hear that there is a lot of work ahead of me. On the other hand, it was kind of nice to once again be validated in my pain. And on one foot (since I’m out of hands at this point), I was glad that I worked so hard during pregnancy. I just keep thinking about how much worse it could be if I had never attempted to strengthen my joints! According to the lovely A, my spine and hips are pretty unaligned; my sacrum is rotated; and my shoulders are slipping forward, with one extremely stiff and the other on the verge of dislocation. Beautiful, isn’t it? 😉 Needless to say, I got my butt kicked a little bit today. But it’s okay. I love that burn that comes with knowing that I am getting stronger!

Alright… well… my hands and wrists are giving me fits and that makes it tough to type, so that’s it for today!

Still… Life is beautiful, even when my body hurts. And THAT is why big Zebras don’t cry.


Much love and Zebra hugs! “See” you next time 🙂