Athletic Lupus Patient (and former Triathlete) Seeking Compression Sock Sponsor.

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.

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4 thoughts on “Athletic Lupus Patient (and former Triathlete) Seeking Compression Sock Sponsor.

  1. Ah Marit, so sorry to hear this. I can’t recall if I asked you as I always feel like uh, another quacky salesman…but I have a friend who was in critical care for 2 weeks and they finally diagnosed her with lupus/autoimmune issues. She was on prednisone and kind of miserable so I gently asked her if she would read a book and let me know what she thought (as she knows I’m into foods and things I actually try not to “promote” things unless people ask as it’s not like what works for one person will work for another). The book was the Paleo Solution…anyway, next I saw her she was slowly making changes to her diet; she’d also passed the book to her husband and he seemed to think “why not give it a shot for month” and see what happened. Result was my friend lost 16lbs (not that she was heavily overweight) – and 8mths later was off her prednisone with a lot more energy – and 18mths later has had a lot of success in other areas of her life – though she is always careful to avoid excess stress…anyway, she said it “changed her life” which is simply awesome. But like I said, every one is so very different and maybe you HAVE already tried it and I am being a major PITA here – but IF you haven’t…check out “Marks Daily Apple” and Robb Wolf’s website for more information. All this yada-yada aside, I am afraid I know no compression sock companies – I wonder if you could just cold-call/email some with pics of former athlete/now DVT survivor…sending you lots of positive vibes, may a turnaround in fortunes be just around the corner….

  2. 😦 I’m so sad for you Marit. I think you should let yourself be sad too. You are such a positive person but grieving probably has to be part of this process too right? I hope you totally defy all things “permanant” and that swelling does go down. Many, many hugs to you! Wishing we could go have a rice krispy treat and diet coke x 25 at Noodles together right now!

  3. You deserve to let yourself be sad and grieve because this does all suck and it isn’t fair. You are tough and handling this all with so much grace but you deserve a good cry (and a lot of wine). And I apologize for complaining about my pregnant swelling. Feel free to think of me as a wimpy ass.

  4. Hi Marit,
    I know I don’t comment a lot (or hardly EVER these days!), but know that I still follow along through FB. I guess all along I’ve held the same thoughts you have – “it will get better! She’ll find the magic solution because she’s strong and positive and it will all improve!” So I was really bummed to read this, too. Like everybody else who’s commented so far – you DESERVE, you have EARNED THE RIGHT to be upset and sad and down and even just plain negative. Because the other 99.9% of the time, you are so positive and handle it all so gracefully, that even the strongest among us need some time where they don’t have to be so.

    Many, many hugs to you!

    The other thing I was going to potentially “suggest” was actually already mentioned above by Michelle!! In reading your post about lupus, the first thing that struck me was, “has she tried Primal/Paleo?” If you’re at a point where you’re ready to try anything, I would really consider giving it a try. I’ve been following Mark Sisson’s “Primal Blueprint” model, which isn’t quite as strict as Paleo, but adopts the same concepts, which are that grains and sugar are inflammatory and are breaking our bodies down.

    If you go to http://www.marksdailyapple.com and search lupus from the main page there, there’s a couple articles that reference it. But even if you just google “lupus paleo” you might be surprised at some of the stuff that comes up.

    Like Michelle above, I know I sound like a crazy salesperson with nothing to sell, but I’ve found this change in lifestyle to work for a lot of people with varying ailments.

    Regardless of what direction you walk in with your fancy boots (!), I just want you to know I’m still out here, following along, and always sending good and strong thoughts your way.

    Big hugs. -S

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