dysautonomia, lupus, POTs, Spoonie Rant

Mobility aides

Sometimes as a middle-aged woman, it’s hard to admit you need help. I don’t know what it is about us if it’s an ingrained struggle to be strong and independent, or maybe a fear of disapproving stares that keeps us from using the very things we need to function! I battle every day with Lupus and dysautonomia, and I fight just as hard with my foolish pride too! A couple of weeks ago I was shopping with my DH, and it happened to be a particularly rough day for me. I came close to fainting several times before I went to the front and retrieved an electric cart. While it was definitely far safer for me to be sitting, it was still hard to see the way people looked at me.

What a frustrating dichotomy we live in!!!! I spend so much effort trying to hide my Lupus from the world, and I work daily to be healthier and overcome my illnesses, and yet here I am secretly wanting to have a neon sign above my head listing every damn reason I have to be sitting on that scooter!!!! And also possibly some profanity in there for good measure.

Also on my shopping adventure, I picked up a shower seat because taking a warm shower can sometimes be enough to wipe me out for an entire day! I have had a couple ”controlled falls” as I refer to them in the past because the heat and humidity are a vasodilator. Having both POTs and OH manifestations this is a recipe for disaster!! For the record, my DH isn’t at all fond of my term ”controlled fall.” He feels it diminishes the fact that I frequently come close to passing out in the glass shower enclosure which clearly spells certain death to him! In all fairness, I manage to slide down the wall and sit before I ACTUALLY pass out so I’m fine. But try telling that to him while he’s gesturing to my EP cardiologist some sort of hidden code for “see the shit I have to deal with here??”  Don’t worry though most of our doctor’s appointments involve a good hearty facepalm or two. Hellooooo stubbornness and foolish pride!!  Anyways I finally got around to swallowing my bitter overgrown pride and put the seat in the shower yesterday. WHY THE F- DID I WAIT THIS LONG!! Besides the fact that I was able to shower and actually had energy left afterward, it felt super luxurious to sit down and shave my legs without playing shower yoga with razor blades!! Again why have I waited this long, and why isn’t this just a standard shower thing?!?! The rest of the world does not know what they’re missing!!! In all honesty, the only people who would notice my shower seat are people who come to visit and they already know what’s going on with my health. Unless some random person wanders into my bathroom which I assure the last of my concerns would be them judging my shower chair, I’m pretty safe.

At the end of the day, yes I’m sick, no it doesn’t always show on my face, but there isn’t a day my body lets me forget. So until they invent a cure and manage to fix my nervous system, I’m gonna rock my purple cane, and park in my handicap spot when I need it and use the cart on those crappy days!! And if you give me a dirty look I just may accidentally run over your heels or smack you with my cane!! Because when a spoonie runs out of spoons all they have left are knives and you ought to run!

dysautonomia, lupus, POTs, spoonie, Spoonie Rant

Bullshit portraits

Sometimes when you tell people you’re off work sick they immediately being caterwauling about how wonderful it would be to be home. How they could accomplish so many things and sleeping in every day would be glorious. They paint this beautiful portrait of how their life would be simply perfect if only they weren’t working.

Well let me tell you-you’re painting with a bullshit brush dipped in lies.

I get angry when people think I’m lucky to be home staring at the same four walls and two furry companions. I assure you, asshat, there’s only so many naps you can take, and only so many spaces to organize. And those are only on the good days! On the bad days, I lay in bed staring at the ceiling or on the couch with my feet elevated so I don’t pass out. Whilst the rest of the world stops for coffee on their way to work where they contribute to society and earn a paycheck, I’m here in my enviously glorious armchair trying to decide if my heart rate will allow me to shower, or if I just add more dry shampoo, and debating how many days can I wear the same pajamas without my husband intervening.

People need to stop telling us spoonies how “lucky” we are to be home!! It’s not all roses!


Favorite fast food! 

One of my very favorite quick dinners is Japanese curry! I can almost always find all of he ingredients in my freezers and cupboards and start to finish is less than 40 min.  

The recipe is usually never the same, it always depends on what I have handy. Today’s run consisted of

  • Chicken thighs cut into chunks 
  • 1 medium zucchini sliced 1/4″ thick
  • 6 small potatoes diced
  • 1/2 onion sliced as you prefer 
  • 1/2 bag of frozen mixed vegetables (I happened to have California blend today) 

I start by cooking my chicken in a large non stick wok style frying pan. You could add a small amount of butter or olive oil if need be but I didn’t need to. 

After the chicken is about 3/4 done, (just slightly pink in the very center) I begin adding my onions and potatoes. Using the oil released from the chicken thighs I brown the potatoes over medium high heat. After about 5 minutes I then add my zucchini. Let this mixture cook over medium for about another 7-10 min until the potatoes are done. 

Then comes the fun part!  

I use only half the box of seasoning and about 5 cups of water. Add the water first and bring it to a low simmer, then add the curry (be sure to break it up first). Be sure to stir it well to incorporate all the seasoning chunks! Then once it’s all mixed pout in your half bag of frozen veggies, cover, and simmer for about 15 min.  

I like putting my curry over rice though it’s not a requirement. So I started my rice cooker at the same time I started my curry. I chose a purple wild rice this time  

I found it in the bulk bins at whole foods. I enjoy trying new grains and rices that way and then I’m not stuck with a huge bag of something if I don’t like it. 

Just to throw this out there we have several different kinds of curry in our house, I don’t have a brand preference. But I have noticed that the Japanese curry version of hot is not exactly what I would consider hot. I would classify it more as a mild flavor. So don’t be afraid when selecting a curry. You can find them at your local Asian Grocer or online. Be brave and expand your cultural food repertoire! You never know you might find a new fast work night go to! Thanks for reading! Have a great day and make on makers!

Crafting, pony beads, suncatcher, connect with your kids, tween crafts,

Beating the heat…

The last few weeks here have been filled with enough heat and humidity to make anyone gag when they step outside! Michiganders are usually used to dealing with more humidity than a YMCA locker room (typically after a few hours outside you smell about the same) but this was a bit more than usual! So the minis and I declared it was an inside type of day and set to Pinterest to find a new project. Sadly as they grow up they lose more interest in crafting and it gets harder to find thing for them to do! I had my doubts but they dove right into this one!  
We got the beads from our local Walmart, the pickings were slim but we were able to find what we wanted for colors. I picked up a few aluminum foil pie pans and mini loaf pans. I was concerned about the chemicals from the plastic being in my normal baking pans!  

It took a while to make the designs but it was filled with chit chat and giggles and at this age that’s an important thing! After the designs were done I took the pans one at a time to the toaster oven I had plugged in out on the back patio. I would recommend using the toaster oven OUTSIDE! The smell of melting plastic is not pleasant!!! I set the oven at 400 degrees and kept an eye on them. The Pinterest tutorial said 20 min but it only took about 10 min for ours. After they were done the girls wanted to use there’s in the flat form but I chose to put mine back in the oven over top of an empty pop can and allow it to slightly melt and form a bowl shape around the can! This took about 5 mins more but you could leave it in longer and make a tighter shape.  

The oldest turned hers into a Percy Jackson themed plate for her to work with her clay on and added the zodiac symbols with a sharpie after it had cooled.  

My youngest opted to make a suncatcher using princess celestia’s cutie mark from My Little Pony.  

The edge on hers looked a bit sparse and there were a few holes but it worked out for hanging! All in all it was a fun afternoon with my Tweens for around $20. And at this age I cherish those little moments and memories! So give it a try! Connect with your kids! And remember have a great day and make on maker!!!

Crafting, Craftzilla, DIY, DIY wedding, Maker, Paper crafting, Silhouette cameo, Thrifty wedding, Wedding crafts

Making the cake! (Topper)

I’m happy to report the wedding is almost here! Time to actually get working instead of daydreaming and procrastinating. (My personal speciality) Mr. E and I have decided on cupcakes for the reception as they truly are my kryptonite!!! In addition to all the yummy little wrappers of bliss I opted for a small round cake so we can ceremoniously cut the cake (and smash it into each other’s face I’d be lying if I said I wasn’t excited about that) so for the topper I wanted to have something that reflects our love of the outdoors and relaxing! I fell in love with this idea  

But being the DIY type of girl I wanted to try my hand at making a version of this that just fit “us” better. I used my silhouette cameo and was able to find a pattern for 3d Adirondack chairs in the silhouette store aptly named 3d Adirondack chair (go figure right).  

The pattern also listed the website for instructions on assembling the finished product. I cut mine out of chipstock to improve the strength.  

I would recommend using  the removal tool in case your cutting mat like mine has a few… separation anxiety issues.  It will pull apart the chipboard.  

Once removed I colored the pieces with some crayons I liberated from my daughters room giving it to look of old weathered wood.  

After a lesson in why I hate elmers dot runner but it’s the only thing Walmart had today…. I was able to assemble the chairs!  

Tomorrow I have plans to run to an actual crafting store and pick up some proper glue as well as the card stock to make the pillows for the chairs. Like everything it’s a work in progress, but half the fun is enjoying the process! Thanks for reading have a great day and make on makers!!!!!