Life is interesting.
For the past month, I’ve met with my doctors and various specialists, had a plethora of tests, taken courses of antibiotics, tried homeopathic remedies, and have constantly worn compression socks (I cycle between pink, black, or white…. then I’ve got the full leg nude/open toed sock that I sport under my jeans, but when I’m in the mood for flip flops). I’ve exercised daily, watched my sodium intake (salt & vinegar chips = water retention), constantly elevate my legs, and have searched for the WHY in all of this. I’ve bought a few pairs of shoes that compliment my compression stockings, and uneasily joked about the permanency of my situation – but in the back of my head never believing this would be permanent. There had to be a reason and remedy. Something, anything. There always is – right?
Yesterday I had my MRI. If anything could determine WHAT THE HELL is going on, I hoped the MRI could.
I generally agree with Balzac when he famously proclaimed, “Our greatest fears lie in anticipation.”
It’s funny – you wait and wait (and wait some more)… and on the one had, expect the worse (because if you’ve mentally prepared yourself for the worst, whatever that may be, you think you won’t be as disappointed)…. but not knowing what “the worst” could be, there’s no real way to prepare. Plus – “the worst” is totally in the eyes of the beholder – what’s “bad” for one person, may not be that big of a deal for another…. yep, I get that. Trust me. And besides – there’s also the possibility that everything will be okay… that your fears turn out unfounded, and life works out great in the end – Happily Ever After. The Waiting Game is hard, but there’s the freedom of possibility too – blissful ignorance of what one’s new Reality will become.
Yeah – waiting sucks, but ignorance is bliss.
About 45 minutes ago, I got off the phone with my nurse. I was prepared for SOME sort of news, an answer to WHY my leg is swelling…. severed lymph node…clogged lymph node…tendonitis….ruptured tendon…..partially-embedded cacti in my anterior shin muscle…. anything.
Instead she responded that there was no noticeable damage to my leg (i.e. reputed tendon, clogged lymph node, nothing that could be “fixed”), save for the soft tissue swelling, which here was plenty of and they THINK was related to my vascular issues. And that my treatment options as prescribed by my doctors included elevation of the limb and continuing to wear compression stockings.
I stared at the phone.
My voice wavered, “Um… like – this is permanent?” Long Pause. I continued, “My swelling will last forever and you don’t know why? There’s nothing I can do to fix this – ever? I’m 31.”
My voice got higher pitched and cracked – I could feel the tears on my cheeks and I know there was snot on my phone.
She stammered, “I can ask the doctor and will get back with you shortly.”
And here I am.
*crickets* *crickets* *crickets*
In my reality RIGHT NOW, nothing sucks so much, as being told that another health abnormality will remain permanent – I’ve had enough permanent thank-you-very-much. I’ve changed what I do, altered my lifestyle, have let go of some things and embraced others…. there’s a lot of heartache that’s been involved, but I’ve always tried to adapt and overcome (thank you Ironman training). My grief isn’t in what I can’t do… I’m sad about who I used to be. And God dammit, I’ tired of it. I GET that my body works a certain way… Lupus is an inflammatory disease where my body attacks itself – soft tissues in particular. And after my DVT destroyed so much of my right leg vasculature, I guess this makes sense. But to be told that there’s NOTHING that can be done, well – that’s a tough pill to swallow. In the back of my head, I figured there would be something – anything – to “fix” this. It’s heartbreaking and devastating when something you don’t think will happen, actually does. And I keep flip flopping between disbelief, anger, shock, resolve, and back to sadness.
Yeah – it may not seem like that big of a deal… but this is just one more thing in a long line of things. Life seems so unfair – I think I’ll be sad (really sad) for now. Permanency is a heavy concept.
So… I feel sort of bad about joking about cowboy boots in my last post. But that was the me who gave this a 50-50 of being permanent. That was the blissfully ignorant me. Lupus is lifelong (and so too are its complications)… coumadin and clotting disorders are lifelong…artritis is here to stay…destroyed vasculature from a DVT – permanent….no sunlight because it makes me sick = sucks to be me (so I cover up ALL THE TIME)…. and now compression socks for lower limb swelling. Permanent. Now this is my reality, and while I’m waiting to actually talk to my doctor, I’m trying to let the news sink in. Being relentlessly positive is GOOD – but I also need to be sad too. More loss = more grieving.
And yep – I guess that I “get” that nothing is permanent… and I’ve spent all of my life defying my doctors and the odds… maybe this will be another one of those things. Time will have to tell. I sort of wish that N was here, and not in Yuma for another 3 weeks. But that’s part of what being a military family is about… he’s gone a lot, and I’m left alone.
So…. if you know of any compression sock makers interested in sponsoring a former triathlete-turned-lupus-patient-DVT/PE-survivor, please let me know. I’m happy to take all sorts of nice pictures in return.