Someone asked me today to tell them something good about my life. They wanted to hear all the good stuff happening, anything. I blanked.
At first. I had just then come from a frustrating (trying not to burst into tears while in public) visit at the Doc’s and my view was pretty dim. Kind of a “so, this is it huh?” Realizing the levels of pain are going to be standard operating procedure and that the sources of my pain (EDS, Thalassemia and CRPS) are what they are. They’re here to stay and with them so will be new struggles and undoubtedly be new and higher levels of pain.
It’s startling how fast the mind works. Between the moment I blanked and the next, I somehow rerouted a lifetime’s worth of memories that could have ever made me smile, and the people that are always there to give their selves to me. And bunnies. Bunnies Bunnies Bunnies.
I never got a chance to tell her any of this good stuff about my life because by the time it was my moment the conversation had moved on. But I kept it going in my head. I think I’ll keep it going.
I had to go in for an MRI on Tuesday. Checking things out in the lower back arena. Lots of pain, range of motion pretty stinky. I mean, I’ve had pain in my back since my early twenties but this kind of pain and the decrease of functionality is an issue. Another issue. So, my new back doc is on the case. We are on top of this. Go Team!
As I was saying/typing, I went in for an MRI. My new back doc ordered this to get the down and dirty before we can go any further and set up a solid plan for treatment. Or even know if there is one. As usual there is the familiar paperwork and questions. When I get back to the room where the magic will happen the MRI guy gets down to specifics which is his job and I appreciate when people do their job well: do I have any metal in my body, have I had cancer and do I have a pacemaker. I tell him plainly I have the staples left behind after surgery from having my uterus removed for cervical cancer. He pauses and looks me straight in the face and says “Huh, if you think that’s bad you should see people with ovarian cancer, now that’s really bad.”
You know when dogs hear a noise and they turn their head and stare, trying to figure out what the hell they just heard? I did that. To this guy. This dude. That just now said those words point blank into my face. I stood there, squinting my eyes and said “UNLESS it’s happening to YOU.” Then I waited. He looked up from what he was writing and actually looked at me. He sank back into his shoes. He shrunk about an inch as he exhaled. He blinked a couple of times then answered me with “Yeah, you’re right. Unless it’s happening to you.”
We then talk about why my doc sent me in the first place. He couldn’t spell Ehlers-Danlos so I spelled it for him. This isn’t a surprise or new, but by now I could tell he was feeling quite foolish. I let him. For the rest of the visit he was rather over friendly and ebullient.
Pretty sure he can spell Ehlers-Danlos now.
I popped my left hip out last night. I was walking, from the kitchen to the living room. It wasn’t one of those Ministry of Silly Walks walks either. Well, maybe after my hip popped. It went out, then in, which is preferred. I have had my right hip stuck in the partially in/partially out position before. Don’t recommend that. In retrospect what seems silly to me (not haha silly but bordering on absurd) is that I am now at risk of dislocating simply while I ambulate. I am careful when I get off the couch, get out of bed, get out of cars, roll over in bed, get out of the shower, go up and down stairs and on and on. I don’t like it when people walk behind me when I am in a group. I get severely nervous. I’ve been bumped too many times and then bam, knee is out. Plus I’m slow and I don’t want to hold up anyone and the thought of them watching me gimp from behind is hella embarrassing.
When I was younger, we are talking elementary and middle school age, I wasn’t as embarrassed about being so freakish. I took to it. Took advantage of it. Friends would ask me to do tricks: Jump chinese splits, clasp my hands behind my back and while keeping them clasped bring them over my head to the front of my body, fold my fingers over each other and bend my wrists back and forward, stand with my face against the wall then do a back-bend bringing my head between my feet, lie on my stomach and bring my feet over my head and rest them in front of my face (this last one I would do while watching TV.) I knew I was different and by volunteering to do these tricks I saved myself from being teased when all of a sudden I would go missing from school for an EDS related illness or I would break a bone from something so simple as tripping.
Now that I think on it, I guess I have my own silly walk. Priory of Preposterous Promenades? Cloister of Wacky Shufflers? The thing is for me to remember to laugh at myself, and the ridiculousness of it all.
It has been over a month since I haven’t wanted to cry for most of the day from the pain. Over a month that the pain from Ehlers-Danlos has kept me from the majority of my everyday functions. I am grateful (it isn’t a strong enough word) for my family and their assistance, their patience and most of all their humor. Laughing keeps me sane, keeps me grounded and reminds me that the pain will subside. And it does. It always does. Sometimes (more often now) it takes longer than I expect. So days like yesterday can happen, where I drove myself to the store, played music and sang along, walked the aisles of the store without having to hold the shelves for support and have people stare. Days like yesterday where I looked people in the eyes and smiled, and meant it, remembering how wonderful life can be when you are out in the world and can see the sky, feel the breeze and watch life go on knowing you are a part of it without the distraction of oppressive pain. My eyes felt so wide as I was able to notice everything outside of me.
Yesterday was a good day.
On further reflection I realize how much I withheld from my last post here. I wasn’t ready for details on specific diagnoses and symptoms. I am also surprised at the level of stress it has caused. You would think that nearly forty-five years of dialog about how to live with EDS would make writing it down easier, but it isn’t somehow. I feel so much more vulnerable than when I blogged about my trek into the Cancer universe. Getting down and dirty, the secret of who I am every day is intimidating. I’m fearful of uncovering the true mess of me. Displaying it all. But why is that scary? Emotions are never a frightening prospect in my world. They are one of the few things I do well. Sometime too well. I think one of my hangups is how I feel shame for not thriving more when there are so many more people with diseases and problems that are so much more severe. Not judging myself, learning to be present and grateful for the moment are my daily goals.
To clear up why I was at the doc’s, it was to rule out an Aortic Dissection. Dissections are more and more common with EDS patients as they age. They are tears in the aorta causing leaks and are high risk with Vascular Type EDS which I have crossover with Classic and Hypermobility. So, when a new and persistent chest pain cropped up I worried. I tried to ignore it. The great news was that I was reassured that my EKG was rock solid and all my pain was the same old dislocated ribs and discs and yada yada. I could have said all this in the other blog, yet I didn’t. I was annoyed with myself. Annoyed and tired once again. Which I will be, again. Nearly forty-five years and I’m still learning. I can honestly say I am grateful for all I know. I mean that with all of my rock solid EKG.
Look who’s back. Back again. I’m not the real Slim Shady, I also don’t play one on TV and I’ll have that song stuck in my head now for at least three days. I’m mostly writing this so my Uncle Frank can rest easily tonight. I’m nice like that, and I have my goal/mission to complete.
With Ehlers-Danlos comes lots of pain. In lots of places. I don’t mean to say Saskatoon. Okay maybe Saskatoon. Places as in the topography of my body. It hurts. All. The. Time. The struggle with the constant stream of pain is deciphering new pain being layered on top of old. Decoding my normal abnormal from possible and new and dangerous abnormal abnormal. Second judgements and talking out of concerns or into some. Should I care about this new pain as much as the last time? Should I bother with the doctor or another ER visit? Nah. It will be nothing (nothing meaning EDS and there isn’t much else to do but slap a pain pill on it.) So, I hem. Then I haw. Then I hurt and hurt until I finally give in (that’s how I look at it anyway) and I go to the doc. I decide I’d rather look foolish than dead.
I’m not dead. I’m not foolish either.
Okay, maybe not %100 foolish. More like %70/30.
Here I go into the land of another blog. This time under the direction and intent to use it for my Ehlers-Danlos Syndrome struggles, travails, opinions, brick walls, epiphanies, gut-wrenching fears and bottomless streaming gratitude that strides alongside. The title comes from my Family Practitioner Dr.Grover when I was only twelve and problem after problem kept cropping up. One dislocation after another, my heart beating so fast I passed out at school, on and on. The decision was made for my Mom and I to take a trip to the Mayo Clinic to see the uber specialists and then maybe get some definite answers that a small town doc in Preston, Idaho couldn’t provide. During the visit, as he checked my stretchy skin, my extra lax joints and my heart, Dr. Grover looked at both my Mom and I and said “There isn’t much else to say other than you’re the loosest girl in town.” My Mom and I have giggled about that ever since.
I marvel at how much I laugh about EDS. I laugh a whole lot more than I cry. But, I do cry and I many times stop myself from crying because it is exhausting and frankly I get tired of being sad about EDS. Tired of being irritated and my most used word to describe my emotional state when EDS is the issue is “Cranky.” I think separating my writing this way might help. With the crankiness. I put this pressure on myself to not let the crankiness about EDS show. The pain and the disgust with “are you kidding me with another subluxation” turns into a metaphorical shoulder shrug that lasts for a week. While I laugh at the ridiculousness of it all, and hold tight all I have, and kiss my bunnies and send everyone I love a ton of messages because I’m in bed. Again.
I’m hoping I do the concept of this blog justice. I’m also hoping I’m too busy to never write another post.