#dSavannahDefects – R is for…

My theme this year for the #AtoZchallenge is #dSavannahDefects, aka “What’s it’s like dealing with #InvisibleIllnesses”. Or, in short, {some of} what’s wrong with me.


R… Rest In Peace

Lemme tell you, chronic fatigue and insomnia are not friends. I was awake for 24 hours, then slept for 22, and woke up to an email from musician/writer Alex Woodward that Prince had died. And then of course, as I scrolled through my Facebook feed, people shared their Prince stories, and his music, and how much he meant to them, and how sad they are.

This year has not been kind to our celebrities and people who shaped our generation, and thus our collective consciousness. So much sadness. So much loss.

And then, just a few days ago, a memorial was held for Terry Pratchett, who left us early last year, and who I’ve stated over and over is one of my Very Favorite Authors. (And you still have time to enter my contest to win one of three Discworld books written by him.)

I couldn’t read the posts from people who were able to attend the memorial. Too sad.

I can barely read the posts and watch the videos about Prince. Too sad.

But I can acknowledge the sadness, and express my condolences to those of you who are in mourning.

Rest in peace, Prince, and David Bowie, and Terry Pratchett, and Doris Roberts, and Chyna, and Alan Rickman, and the rest we’ve lost this year. Your name is still spoken. Your legacy lives on.


… rays of sunshine

One of my wee sunshine paintings.

One of my wee sunshine paintings.

In a way, it seems kind of futile to write about this topic, but on a day of death (and also a day when my first post of this year’s Challenge is late – because of a family emergency) (but all is well; we’re all just tired at this point), we need to find happiness however we can, so I’m still gonna write what went through my mind last night (before I crashed for my long sleep).

The Mighty (a site that I’ve mentioned before; it focuses on #InvisibleIllnesses and #InvisibleIllnessWarriors and the like) has an awesome post called 17 Ways to Help a Friend With Chronic Illness Who’s Having a Hard Day.

As I wrote about under F is for Friendships, many times us #InvisibleIllnessWarriors get left behind by our friends for a variety of reasons. And so many people have said to me “I wish I knew what to do for you”, and unless you have a billion dollars and can donate to my gofundme campaign to help pay for my medical expense (which are numerous and crushing), there really isn’t anything anyone can really do.

Except, as that article on The Mighty points out, there are actually things you can do. Simple, inexpensive things.

This list has stuff you can do that I would like, and more than likely other people fighting an illness would like too:

  • Just send a text that says “hi”.
  • Send a text or email with a joke or funny meme.
  • Send an e-card. There are lots of sites that have free ones (though it looks like some have started charging or you have to create an account), such as American Greetings, Blue Mountain, My Fun Cards, and for funny, tongue-in-cheek messages, SomeECards.
  • Mail a funny card. It doesn’t even have to say anything about the person being sick, but it can. Honestly, I’m stuck in this sick body forever, so it’s okay not to mention it. I’d love to forget.
  • Actually, send any fun mail! We mostly get bills (ugh!), and from doctors at that (double ugh!), so send funny cards or just a note or a postcard or even a silly drawing on a torn-out piece of notebook paper. It’s all welcome.
  • If you see something in a store that reminds you of your friend, you don’t actually have to buy it. Take a picture of it and text said picture to your #Warrior. My bestie Brandi and I do this, and it saves us both a bunch of money (and space in our houses) but still shows we’re thinking of each other.
  • If your #InvisibleIllnessWarrior is like me, and spends most of her time in PJs, send them a new set of PJs! Or a cozy hoodie. Or a soft blanket. Something that gives them (literal) warm fuzzies.
  • Also, if they are like me, they are bound to have an Amazon Wish List. Take a gander on there, pick something out, and have it shipped to them. Or, just send them a gift certificate.
  • Send or take them a coloring book. They are fun, and they help the #InvisibleIllnessWarrior cope. I personally am a fan of the silly little Play Pack Grab & Go kids ones that sell for $1 at Target. (I like the adult ones too.)
  • Pay attention! Your #InvisibleIllnessWarrior friend may mention something that you can help with.

My writer friend Karen deLabar (of #OrangeKaren fame), almost died of toxic shock syndrome, then had numerous doctors’ appointments and the like to heal. One day she noted that she didn’t have anyone to take her to an appointment. Fellow writer friend Lorca Damon sent a car to pick Karen up and take her to said appointment. She wrote a post about it, which I can’t find now, but suffice it to say, Karen was thrilled, Lorca was sent her halo (and she promptly did something to tarnish it), and all because Lorca was paying attention.

Obviously, you may not be able to afford to send a car for someone, but if you pay attention, your friend may mention something that you can do.

  • If you’re in the area in which that person lives:
    • go by their house and do some light housework. Pull some weeds. Sweep up the pet hair.
    • just go by their house and sit with them and chat.
    • watch some TV or a movie with them.
    • take them flowers. They don’t have to be fancy; they can be blooms you picked out of your yard.
    • If they don’t have crazy food restrictions, take them dinner. Or, take dinner for their caregiver who is tired of trying to keep them fed.
    • Give them a hug.
  • Create a mix tape (or the modern-day version thereof) of fun songs you know they’ll like.
  • Pay for a month of Netflix or Hulu.
  • Listen. Just. Listen. Let your friend talk about all their woes, and hide your eyes-glazing-over reaction. Sometimes we just want to talk about all this craziness in our lives, but we don’t want to be a burden, or to bring our friends down. Tell them you want to hear what they’re dealing with. Don’t offer remedies or solutions. Just lend an ear or a shoulder. Or both.

If any of my #InvisibleIllnessWarriors have other ideas, feel free to share in the comments!

… Raynaud’s Disease

This is another of those #InvisibleIllnesses that most people haven’t heard about. It’s also an autoimmune disorder. Raynaud’s Disease is quite simply, “A condition in which some areas of the body feel numb and cool in certain circumstances.” Females suffer this more often than males. And one of my very good friends has this disorder.

What it feels like: Raynaud’s generally effects the hands and feet, so that your fingers and toes feel super cold. People who have this often have blue or purple hands and feet. And feel like they can’t ever get warm.

I have not been diagnosed with this condition, but I have on rare occasions had purple nails (instead of typical pink), and I often have very cold hands. (I more frequently have tingling in my hands. Fun.)

What it is: It is caused by circulation issues and “blood vessel spasms”. It can also occur “after exposure to changes in temperature (cold or hot) or emotional events.” (Per medicine.net.)

Treatment: There really isn’t much that can be done. Some sites suggest “dressing warmer”, while the Mayo Clinic site offers some other treatment plans. Of course, they also suggest that you move to a warmer climate to prevent attacks, which isn’t exactly feasible for most people.


And finally, my friend Rob told me I should give him a shout-out in my “R” post. Which I’m doing, even though he doesn’t read my blog. Do you, Rob? (My gosh. I’ve just realized I’ve known him for *15* years. Sheesh. We’re getting old.)

More ramblings / other posts you might want to read...

dSavannah

About dSavannah

~ #disabled #spoonie fighting numerous, chronic, painful #InvisibleIllnesses ~ also #wife #feminist #ally #advocate #papyrophiliac #DogCatTurtleWrangler
This entry was posted in #AtoZchallenge2016, #dSavannahDefects, community, friends, health, illness. Bookmark the permalink.

14 Responses to #dSavannahDefects – R is for…

  1. Elaine LeDoux says:

    No comments needed…..so I will just send love

  2. It has been a rough year for losing folks. My family as well as beloved celebrities. Let’s all agree to stay safe and as well as we can!

    @mirymom1 from
    Balancing Act

  3. Joy says:

    hugz! great list of suggestions.

    Joy @ The Joyous Living

  4. Betsi Key says:

    So well written and speaks to so much people miss! I’m always praying for you! (Hugs)

  5. Betsy says:

    Great ideas on little ways to help.

    Of course for me, the hardest celebrity loss is Glenn Frey. Huge Eagles fan. We are losing way too many great ones.

  6. I have Raynauld’s syndrome. It is not fun at all in the winter (and I live in upstate New York). I’m sharing this post – it is full of good suggestions.

  7. Sending you a boost of POSITIVITY——WHOOSH——– all the way across BloggyVille! <3
    Writer In Transit

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