Sexy Summer Strategizing for Chronic Illness

Memorial Day Weekend has come and gone, and y’all know what that means! Summer has unofficially started! Wearing less and going out more, it’s going to be hot hot hot!

Just kidding. Well, I live in Florida, so it WILL be hot hot hot, but not in the “sexy summer fun” type of way I see popping up on magazines’ social accounts. This is the time of year when I go from being a smug Floridian “living in paradise” to an embittered shut-in glaring at most places north of us. (Yes, even you Atlanta. I lived there for two years and experienced some crazy pleasant breaks in the summer heat a few times so don’t @ me. Texas and Arizona, I’ll give you your inferno-esque due.)

But for me, summer’s unofficial start also meant a bunch of doctor’s appointments for “summer strategy sessions,” as my cardiologist puts it. And I’ll tell you what, the outlook feels bleak at this moment. I know many autoimmune and chronic illnesses are affected by the heat, but for the purposes of this blog, I’m just dealing with post-orthostatic tachycardiac syndrome (POTS) and a positive antihistone blood marker that has all the symptoms of lupus, requires a lupus drug but isn’t quite lupus. Still testing to find out what it is, or if it’s just a precursor to lupus.

I checked with my cardiologist the other day to see if I was imagining that my symptoms (blood rushing, heart pounding in my ears, nausea, dizziness) start as soon as I hit the garage. I’m not. Apparently, the heat’s effects are immediate.

Ok, so stay cool. But I can still do the pool and boat because I”ll be in the water, right?

Well the rheumatologist confirmed that the crazy rash I got being out in the sun last weekend was from increased UV sensitivity, due both to the anti blood marker(s) and the lupus drug I have to take for it. I didn’t burn – I kept applying sunscreen all day, but the itchy bumps that appeared everywhere were worse. Apparently my superior Italian melanin has finally met its match!

So I just need to avoid the heat and sun. In Florida. In the summer.

Last summer was rough. I was the sickest yet, but didn’t have much in the way of diagnoses or medication yet. We were on the right track but still testing. So I felt like garbage and couldn’t go outside. I didn’t have “strict doctors’ orders” yet though, so I was embarrassed to keep explaining to my family and friends. (Honestly, some of them thought I was being a baby about it, and after awhile, it gets old trying to explain an ailment that’s only partially diagnosed.) I was in a deep depression cycle, and it didn’t really end until the first “cool” front in late October.

Really just an excuse for a Ryan-Phillippe gif. You’re welcome.

I refuse to go there again this summer.

The first thing I focused on was taking care of my skin, both from a comfort standpoint (itchy, dry skin, rash or no rash, is lamentable), but also to soothe my vanity.

Before we dive in and I start extolling the virtues of more expensive-than-average and just-plain-expensive skincare items, know that I’m not a beauty product snob. (My cheapest favorite: Cetaphil bars are my go-to face and body cleanser. ) I use what works, but as I get older and have some health issues that affect my skin, it’s been a little more complicated and expensive.

I researched good sunscreen for people with lupus or taking lupus medication. A lot of dermatologists seem to recommend La Roche Posay sunscreen, so I’m trying the Melt-In Sunscreen Milk with SPF 60 which is $30 on Amazon Prime.

I purchased La Mer Creme de La Mer in the duty free shop on my way home from Rome last fall, and loved it. But when I ran out, I tried to go back to a cheaper (but actually not that much cheaper) option. Enough of that. My always-dry skin is way too dry with these illnesses and medications, so I’m going with what works best. The 1 oz size lasted a good several months, although truthfully I wasn’t exclusive with it, so I’m interested to see how long it lasts this time around. Surprisingly, the heavy Moisturizing Cream doesn’t make my face sweat as I thought it would in the heat and humidity, so I went with that instead of La Mer’s Moisturizing Cool Gel Cream (best for normal-to-oily skin) or Moisturizing Soft Cream.

I also got samples of La Mer’s Reparative Body Lotion, because of the “healing properties” of the “miracle broth” and tried it on the sun rash this week. Truly amazing results. FYI – a cosmetics source I know says the Lotion is more effective than the La Mer products cost, but for a reason. They’re super effective and feel amazing, so you’re not *just* paying for a brand name.

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One last thing re: La Mer. I’m linking to their site because if you sign up your email address, you get $75 off a $350 purchase (this being La Mer, you’ll hit that if you get two products or certain sizes). But overall, shopping on their website is kind of a pain. I’ve experienced technical glitches and had to get customer service help every time. So I’d recommend shopping for these products elsewhere, preferably somewhere where you can earn rewards like Nordstrom or Sephora (both sell it, as does Neiman Marcus & Bergdorf Goodman, but neither have a rewards program). Nordstrom is my favorite because it has ShopRunner with free two-day shipping. If you go to the Nordstrom counter, they’ll set you up with good size samples to take home and try different products. Violet Grey is another good option when they have a sale (infrequently!) because it’s the only place I’ve ever seen a discount on these high-end beauty brands.

The next prong of my summer survival strategy was getting a Sleep Number bed, which we did during the Memorial Day Sale, which saved us $1,000. It won’t get here for 3 weeks, but I’m really excited. I’ve thought about getting a Sleep Number bed for years, but never actually tried one until our friends bought one and couldn’t stop raving, and their recommendations are hard-won. As some of my pain areas are being treated, I’ve been able to identify specific areas that are worst when I wake up. We stayed at the Sandpearl Resort last week, and I woke up in almost no pain, which NEVER happens in my own bed. Quality sleep is a huge problem for POTS patients, as are chronic fatigue and pain with both illnesses. As much as it pained me to buy a new mattress when the other is only 3 years old, if I can get better sleep and eliminate some pain, it would be well worth the money. The sale and 100-day window to test it out made it a no-brainer. I might need a separate post to share the in-store shopping experience, which was pretty cool. I’ll post the verdict on whether the bed is as delicious as I’m hoping in a few months.

But of course none of this changes the fact that Florida is unbearably hot, with no respite, from the end of May to at least the end of September. So ultimately, I’m going to have to figure out ways to be somewhere else while the children are on summer break.

A benefit of being a PR consultant is that when I *am* able to work again, I work from anywhere. Having an airline pilot for a husband helps in that respect as well. This year, I was still kind of reeling and adjusting financially from the loss of my income. It’s still been less than a year since I had to essentially shut down my consulting business because I was too sick to work. So frankly, I didn’t save enough for two months out of town. A road trip to the Adirondacks and family might be the extent of it this year, but I’m looking ahead to next year so we can save enough to get to cooler climes. More on the search for location(s) to come.

Why am I basically giving a public run-down of what I did last week? Partly as therapy; it’s not as heavy once it’s on paper. Partly as information for my friends so I don’t have to explain my limitations every time I have to say no to a boat trip or outdoor outing. Partly because I think I find really good products that y’all might want to know about. And partly because summer can be a wonderful time, no matter your location or circumstances, but it’s not rose and lobster bakes all day, every day for anyone. But like anyone else, I’m going to post palm tree pics from the Sandpearl pool on Instagram instead of the sun rash it got me. So instead I’ll stay real here. Happy summer!