Too Many Tabs! A "Life With Chronic Illness Walkthough"

Hi! I'm the Purple Goddess, and I have Ehlers-Danlos Syndrome, Dysautonomia/POTS, Mast Cell Activation Syndrome, Chronic Fatigue, and well, you get the picture. EDS is from my genes, but the rest of it all hit me hard after I suffered a concussion in January of 2012. Trauma can really kick illnesses and their comorbidities into high gear, and that's exactly what happened to me.

Part of my picture in living with these diseases is that several of my symptoms can rear their heads, and even take over, on any given day: brain fog, severe bodily pain, anxiety (and I mean Take Me Down and Render Me Helpless level anxiety, not just 'I worry a little'), to name a few. Also just for fun: the possibility of anaphylaxis from any number of sources at any given time. Thus my being homebound. It's not safe out there for me!

When I'm down, all those tasks that seem to take no effort at all (for able-bodied folks), like making phone calls or ordering glasses or reading articles or any number of seemingly small jobs - those tasks start piling up in a huge neverending to-do list, which on my computer looks like having a billionty and three tabs open at all times.

Why so many tabs? Having a chronic brain injury or even chronic brain inflammation caused by other things can really wreak havoc on a person's memory. So if the tabs are open in front of me, I will not forget to address them (eventually). Mostly. Maybe. 

When I have 'Lucid Days', as I have taken to calling them - that is, days where I can actually think clearly and I don't feel anxious (at least within the comfort of my own home) and my pain is at a level I can still function within, and I even have a few spoons, I am all of a sudden struck with the urge to doallthethings! Because it's now or....who knows when I could have this lucidity again. Take advantage!

After a really long flare that lasted what I think was weeks, I am having a 'Lucid Day'. 

Today after I:

• unloaded the dishwasher
• got all the morning smoothies and supplements together for everyone (I always do this, even on my worst days, because I put a system in place to make it part of routine no matter what, so I can)
• finished mending a quilt and re-quilted some of it

I sat down at my computer to do actual work and not just stare mindlessly at random comedies I find. 'Work' for me starts with investigating all of these random tabs I've got open awaiting my attention. And then somehow, (see: adult onset ADD caused by chronic illness), I ended up writing a blog post (or three) for the first time in.....two months. So here we are on the topic of Too Many Tabs (A Life With Chronic Illness Walkthrough). 
Dare I list what some of these tabs are?

Well, I'm going to. This is helpful for ME to process my process, so I'm making the list:

• my email, always open
• three Amazon tabs open as I investigate the possibilities of replacing my husband's Vascuzyme with the individual supplements as a cheaper option (and notes in my notebook with ingredients and costs as an adjunct to this one)
• a Google calendar tab next to a blogger tab with the blog of lots of cool things to do with kids in Portland this month (which for the record, I will often put several of these events on the calendar and for a myriad of reasons we rarely ever attend any of them - but I like to hold out hope anyway)
• my zennioptical page with my order half finished, that has been open for days, because I cannot get past the types of coatings to order (too many choices, I'm not entirely sure which ones to order, is this REALLY the frame I want to commit to? brain fog)
• a page for an RVers social platform that I keep meaning to catch up on
• the cancellation page on ancestry.com wherein I meant to cancel, but then they offered me three months for the price of one, and I froze up because I didn't know what to do - the offer is still featured prominently on the page, just awaiting my response. (I was canceling because 1) I realized that genealogy research was going to take a LOT longer than I originally anticipated and 2) I've really slowed down on my incessant interest in doing said research as of late, and I'm not sure the interest will reignite soon, especially as the weather is improving and we might be moving into the RV forthwith.)
• a psychologist I am paying the longest game of phone tag with ever  (I'm 'it') to see if she can treat me without my having to leave my house (it's literally been months since I first called and left a message)
• a wikipedia page where I was looking up ancestors
• a couple of recipes for making one's own shampoo and body wash because I seem to be allergic to some ingredients in mine, the very natural one I use that we buy at Natural Grocers
• a couple of medical marijuana resources and programs I mean to enroll in that could get me discounts on and help with paying for meds (I am allergic to opiates and this is the safest pain relief option I can find, plus dozens of other reasons that could easily have their own blog post someday)
• The Dan and Phil Tour because my son is a HUGE fan, the shows anywhere nearby are sold out, and I'm hoping they will add another close by that I can take him to
• These articles:

Cannabis Protects Against and Reverses Brain Damage

The Genetics of Chronic Inflammatory Response Syndrome From Biotoxins

Your Cells Are Listening: How Talking To Your Body Can Help You Heal

Barnes and Noble's Summer Reading Program

• these articles: 11 ways to make body wash, and this body wash recipe, and also this one. (you may be thinking, "Sheesh, how many body wash recipes do you need?" But I do a thing with recipes where I combine one or three and make them my own. 
• This delicious looking recipe for shoestring sweet potato fries that we are going to make this week. And by 'we' I mean my tireless (i.e. exhausted) husband who cooks for us now, in addition to literally everything else
• my RV Repair and Maintenance Pinterest Board because we have some things that need doing on the RV so I was looking up some stuff for my husband
• four Craigslist tabs with motorized wheelchairs for sale
• my swagbucks page open to an image search for sloths (I get points for searching there, which I can redeem for Amazon gift cards)
• two tabs explaining the differences between eyeglasses lens tints and what they're good for
• this, the tab I'm blogging from

This is what happens though. The onset ADD that develops with an onset of the full impact of chronic illness, because there are so many things you WANT to get done, WANT to accomplish, and they end up taking sooooooo much longer because they can only happen when you have a "Lucid Day" and the spoons to do it. (If you haven't heard of or acquainted yourself with "The Spoon Theory",  please hit up that link and do it now. It gave an easy relatable term to a whole community of "spoonies", or those of us with chronic illness.) And then your brain does NOT know where to focus, because there are SO many things that need doing RIGHT now! Because everything becomes a priority when you have to make it wait for you to be able.

The goal is to get those tabs back down to a much more reasonable level. Check them off the list. Disappear some of them. That was my goal today. I DID manage one of them before veering off onto my Blogger tab, which by the way, I opened  a NEW tab for, so really, at the start of the day this one wasn't even here. I ADDED one. Ha.

But I DID manage to get past what has been holding me back from ordering my glasses for longer than I want to even admit. Weeks. Months even, really.

I picked out the frames I wanted. I had my prescription entered into my account. I got the page on the order that offered different coatings, and there is where I got stuck. There were just so many options, and I could NOT figure out the differences between the coatings. I kept reading them and rereading them and they just were not making enough distinctions for me to really GET the distinctions, or differences between them.

The difference is, today, I was lucid enough to see that there was an option to chat with a representative online, and I was actually able to articulate to them the questions that I had about the coatings. And I got through it! You may not know it, but that was a BIG accomplishment. A feat of wonderment. I'm serious, too. It was a Big Deal. 

 So I did that. One tab down. Hopefully I will be lucid enough for long enough to knock out a few more. Each one is a feat like that, for its own reasons. But each one is conquerable, in its own time, if I can just get to it, which is a mountain in and of itself. 

But today I conquered a few of those tasks that have been piling up. And I know enough now to take the time to enjoy and celebrate each one, no matter how seemingly small. Because in the world of chronic illness, nothing is small anymore. Everything is a Big Accomplishment. And today, Achievement Unlocked! 

registering the RV - and driving it for the first time

Here was a fun day - we went to register the RV the other day only to be told that we needed to have the actual RV present so they could compare the VIN numbers. Oh!

When we bought the Rv, the previous owners delivered it to our house - we had actually never driven it before today. I guess it was time to learn!

We had to get it out of this spot and through the gate into our driveway. You can't see it from our photo, but the gate is parallel to the way the RV is facing, about 50' in front of it. Which meant we needed to turn the RV.

* I also need to say lest we look all kinds of wealthy, this is the first time in ever we've owned three vehicles. Ever. But the red one is on its way out because it's actually done - it has a blown head gasket, which is why we even bought the second little white car. The great thing about driving a car that is 18 years old is that even the cheapest 2013 car will be a huge upgrade in comparison. And we DID buy the cheapest 2013 car to replace it. We still don't have power windows or locks. But we DO have intermittent wipers! Which make us ever so happy. And way better traction in the rain. And a larger trunk. And the dealer's warranty, which is a first for us. So: upgrade!

And the RV isn't so much a vehicle as a home on wheels. So really, we still only have one car, despite what your eyes might be telling you from seeing this photo. I don't know why I felt the need to explain all that, but there it is.

We got this far and had to stop and reassess our plan. In this photo, the gate would be to the right of the RV, still parallel, and about 50' away, give or take.

We got it angled only slightly more away from the gate. We're still learning!

This took an inordinate amount of time - like more than 20 minutes, but it's finally pointed toward the gate! After this we still had to back up and angle a few more times to get it lined up exactly with the gate opening, so we wouldn't crush our irises outside the gate.

Success! We made it to the DMV parking lot! And by we, I mean my husband drove it while my son and I followed in the car - since the sofas are both ripped out, there aren't actually three seats in the RV right now, and he wanted us to follow in case something happened. Luckily the DMV is only 10 minutes drive from our house.

We're legal, and it's officially in our name once the title comes in the mail. One step closer to final!

Still to come: painting the walls and laying the wood floors. We still need to procure both this weekend.

settling in

Our house, then rental we are currently living in, is beginning to look kind of awesome. As in: things have a place to be, they are put away, there are pictures on the walls and it looks like a home. The basement is the only room left with some organizing left to do, and it is really coming together. Our "Get 'Er Done" list is shorter and shorter by the day. we are finally at a place where I am feeling relaxed and like I can breathe and like okay, things are going to be a right now. And. We have even begun to decorate for the holidays. Home!

So we are ready to settle into a routine now.

Routine.

I have been lucky enough to manifest myself a wonderful group of women here who are fast becoming my friends. This is a group of mothers who are brought together by some commonality in parenting - but are diverse and wide in ways of being/doing, schooling, parenting, living. And I love that. One of the things I loved about living in intentional community was that there was such diversity in the parenting, but culturally we found commonality - children were treated with respect, compassion, love and caring. I have found the same in this group of women. And not just support for the children is here, no. There is so much support for the Mamas - plenty of Mama nights out together, and family events, and playdates. And so many shared interests! I have found personal growth advocates, knitters, crafters, folks who eat Paleo and traditional foods, sources for grassfed meats and raw milk, women to talk "woo-woo" stuff with.

One of these Mamas, who I know from our blogs and from our common parenting and such, her family has actually taken us under their wings, so to speak, and has basically been our host family for our transition into Portland. They have taken us into their home, they've given us tours, they've gotten to know us - they even invited us over to share Thanksgiving with them and their family. This Mama and I have become fast friends, and obviously she is one of my besties here already. It took me three years to have a bestie in BC - here, in two months I already have someone I feel I can confide in regularly. Playdates/Mama dates are in the works with other Mamas I have felt a connection to here already - and I have felt welcomed into the nights out with open arms - no awkwardness at all. It has been just awesome. I could not imagine a better welcome into a new city. Seriously.

One of the spontaneous upcoming events in this group is a Vision board party - next weekend, in fact. I generally like to make my Vision Boards on Aries new Moon, and get all that great 'ME' energy all infused throughout. And I can be flexible. It go me to thinking, this routine...I don't want my old routine back. I am in a new city, in a new chapter in my life. I am a blank slate, and I can CREATE what I want. SO what DO I want? I want to create a different kind o routine. A routine, yes, but one that is proactive rather than reactive. One that is infused with possibility and fulfilling my goals and living the life I WANT rather than living by default.

What an opportunity! Getting together with these awesome women and basking in his positive energy of creation, and creating for myself the routine I wish to have...making a list or a map or whatever I am called to do that incorporates all of the elements of this new routine I wish to create. Brilliant! And so I am joining this party. And building on these connections I am creating. I am SO excited about it. I already love it here. I am excited to see what else unfolds as we get to know more, see more, do more here.

all of my insides

I feel so accomplished! This morning, I:

~ made mayonnaise
~ made my veggie juice
~ made a green smoothie
~ made ketchup
~ made stock
~ got everything together in the crock pot for tonight's dinner
~ made ceviche
~ steamed butternut squash and then put it together for pie
~ steamed cauliflower and then made cauliflower salad (think 'potato salad')
~ heated up some stock for Kiernen and me to drink
~ did all of the dishes
~ started some more sprouts
~ cleaned the kitchen
~ printed out my proposal for keeping bees at my local organic farm to take to the meeting there today

Whew! Later I'll make the stock into beet soup as per Kiernen's request. We'll also have the ceviche later (it's made with oysters and crab meat).

My friend who owns the local organic food delivery brought me over a CASE of buttercup and acorn squash that needs to be used - wahoo! I also got two cases of mangoes from him yesterday, so it's a good time for lots of smoothies...

Which, by the way, because of my messed up digestion lately (lack of sleep plus stress plus too much watching of "Big Love" (I recently started watching it and am almost caught up to where it is now) has really messed me up and made me unable to digest anything)...okay. So because of my messed up digestion, I'm taking it easy on myself and having mostly liquids today and for however long. I'm also going to start taking digestive enzymes, in addition to my CLO and vitamin C. And I think adding more fermented foods isn't a bad idea, either.

I'm about to go to a meeting at my local organic farm to "create relationship" - so they can get to know me a little better, and so they might be convinced to allow me to keep my hives there alongside Tricia's.  I leave in just 15 minutes! Gotta go get myself ready.