Well – the traditional MayGrey & JuneGloom has officially settled over Southern CA. As a lupus patient with a pretty serious aversion to the sun, the coastal fog + general grey doesn’t really get to me. Rather, I embrace it. Honestly – there is NOTHING like an early morning run in short sleeves, not worrying about sun or how it’s rays make me sick. Sure – it may look slightly depressing, but it’s really not all that bad.
As for everything else – once again, I am SO grateful to my amazing friends and family, and incredible support from blog readers, the Facebook community, and complete strangers even. It’s the little kindness, the nice words, the helpful suggestions, the extra support – they DO matter, they DO make a difference. And when I get uber sad about the tough bits of my situation, I think about my friend J’s suggestion, “Next time you go to a ball, make sure your gown has a slit on the non-DVT leg.”
It makes me smile every time.
I will definitely check out the Paleo diet suggestions that I received. Lupus, being an inflammatory disease (in part), is absolutely affected by what I eat. So… taking a second look at my diet is probably worthwhile. Less diet coke – um.. yes on that too. So – I’ve been drinking more soda water… there’s something about the bubbles that I just like. As for the other stuff – I’m still compressing…. faithfully. I’ve got my VitalSocks on (as we speak! Er – write) – and have my legs up. If I’m going to be trapped wearing compression socks for a long time, these are GREAT. And yes – I’ve tried A LOT of pairs – trust me. I’m trying to meet with my doctor this next week – we’ll go over my options. I decided to take a week-long “holding period” – where I could explore the possibilities, all worthwhile. From Paleo diet to valve surgery. The Valve stuff…. eh…. I’m a little nervous about. Chronic DVT patients are notorious for having destroyed valves – it would be one thing to fix a weak or leaky valve (which is something that prevents the blood from flowing backwards DOWN my veins towards my feet… )…. Heart valves get repaired all the time. My valves were just destroyed by my clot… like.. there is NO function. No valve. Nothing there – so… how to fix something like that? Well….
As my doctor cheerfully said last Friday, “The hard part is that you’re SMART, but you’re not a doctor.”
I took that as a compliment – she’s right. There are a million thins out there – we just need to find the right fit for now, and then adapt.
In the mean time… M and I went cowboy boot shopping. I’ve got my first pair EVER – and I love love them. I think I’ll try to find a cowboy boot sponsor- those things are expensive! Well – more than what I’m used to spending on running or hiking shoes. BUT – I’ve found a cute dress or two to match.. and suddenly my permanent health complications seem less devastating. It doesn’t take away the pain or sadness… but it’s a positive thing to focus on….Because at the end of the day – all I want to do is NOT be reminded that I’m sick. To fit in… I’m also angry that I’m alone, rather that N isn’t here (and I’m pretty certain we share the same sentiment on this one). I’ve gone through a lot of hard stuff when he’s away – let’s face it, EVERY military spouse deals with $hit when their Marine/Sailor/Soldier is gone – sometimes I just get tired of it. I haven’t felt this sad since I was initially diagnosed with lupus in August 2010, and then a little last summer when I had a very bad flare-up.
So retail therapy was the key – and M was my partner-in-crime. It was the first REALLY happy day that I had had since finding out about the Chronic Valve Insufficiency and Post Throbatic Syndrome (resulting in Lymphedema). And even though I posted the picture on FB, I’m totally going to repost… because it meant so much… like… in spite of wearing compression socks, I can STILL look normal… not be reminded that I’m sick, and my body has lots of complications.
Other stuff that kept me occupied….? A music gig at USD with these fantastic fellows:
…And yes – there WAS music on the page. You just can’t tell from my exposure.
I did a lot of homework….and prepped for another massive Photoshop Project –
…and managed to submit my Artist’s Statement exactly 18 minutes before it was due. By the skin of my teeth – Holy Close Call Batman. But it was done, finished – and I met the deadline, so that’s all that counts. And no – the Pizza Port ale only made it better, NOT (nearly) late.
So, for now – I literally feel like I’m in a holding pattern. Waiting for stuff to happen – between doctor’s appointments, more photography work and projects due, violin rehearsals & gigs, and another week or two until N returns from his “desert oasis” – I’m content to coast. Tomorrow I’m hiking in the local mountains with one of my hiking groups. Definitely plan on bringing the bear spray, as it’s the MOST common mountain lion roaming area in all of SoCal. What? You think I wouldn’t look that up?
Of course I would!
I hope that everyone has a GREAT Sunday and rest-of-the-weekend. Eat the icing, avoid the mountain lions, wear compression socks (and elevate), drink the good wine with friends, and tell your loved ones that you love them. Love it while you live it.