Wednesday, May 20, 2015

how do I be okay with it?

Days like this are hard on my psyche. The sun is out, it's a lovely day outside, yet I'm in a flare - I can't brain, I can't physical, I can't even brain enough to take care of things that need taken care of online like the budget, filling out my application for disability, passport stuff...

But my head feels like pea soup. And my body is pain.

All I can really do is watch movies or TV shows, because it's all my brain and body can do. Well, that and make me feel insane amounts of guilt for what I am unable to do. That's he brilliant part. Because it doesn't matter that I know intellectually that this is my illness, I'm in a flare, there is nothing I an do about it. My brain says, "You SHOULD be able to do this. You SHOULD be packing, you SHOULD be doing laundry, cooking, getting things in order. You SHOULD get the budget done, or the paperwork for disability, or a million other things....

An instead of just going with how I'm feeling and accepting that this is what it is, and it will pass, and today is not an activity day, I just tell myself how much I suck for not being able to accomplish any of the things I think I ought to be able to accomplish.

And people will say, "Be gentle with yourself." I mean, *I* say that to people, I do!

But my brain gets stuck in this loop and I forget how. How do I be kind to myself when there is sun and there are a million things to do and my body and brain aren't cooperating and I just can't? 


Because sun *should* mean I'm not in pain. It usually does! But not today. Today he barometric pressure is squeezing my veins and making me so incredibly fatigued. SO FATIGUED.

How did I get to this place? How did I get HERE???

This was not supposed to be my life. 


How do I rectify this? 

How do I just allow what is, and forgive myself that I am here? 

Saturday, May 16, 2015

adulting like a boss - organizing important paperwork FTW

I'm adulting like a boss today.

I went through alllll of our old medical paperwork and found the addresses of all the practitioners we've had since we left St. Louis, so I can request copies of our medical records. I have what I could get from St. Louis, but nothing from anywhere else we've lived.

And I did it because I need a new social security card. So I needed to find my birth certificate.

Somehow while I was looking for it, I decided I needed to make an emergency/house/RV binder for all of our important papers -  because we won't have a bog old file cabinet in the RV, and I need to keep all the important stuff close. I found some cool tutorials about making emergency/home binders I had previously pinned on Pinterest:

The Emergency Preparedness Red File, which has a very useful printable checklist for which documents to include, plus photos. I had to laugh at the one CD of photos they had in their book, since at my son's tender age of 10, I just filled a box with DVDs of our collective photos. But I will include a CD or DVD of photos of the inventory of our home, and the items that are important to us should there ever bee a need for insurance purposes.

I also liked Creating a Grab and Go Binder, which has the number 23 (skiddoo!) in the title, PLUS has links to some ID kits for kids and pets, which is kind of cool.

And this must be the most organized person on the planet, and if by the grace of the Universe I could manage even a fourth of the organizational skill this person has, I would be delighted. Just look at this: Home Organization 101 - Week 4, The Office. You will either feel incredibly hopeful that you, too, can have this picture perfect life, or vastly inferior. I'm somewhere in between, but it sure is nice to see what it might be like if I could accomplish it. Anyway, scroll down to the binders part - that's what I'm really referring to.

And back to the binders *I* made....

Thinking about making the Important Papers binder led to my decision to completely reorganize my current medical paperwork, which led to my digging out alllll the old medical paperwork for all three of us and making an organized binder for each of us (mine is actually two binders - one of just my medical history, and one with everything else, because I'm overly complicated like that).

As you can see, in there are my CDs of MRIs, echoes, x-rays and CT scans I've had. I have tabs for: Test Results, Family History, Primary, Genetics, Allergist, Physio, Vision, Dental, Receipts, Meds/Supplements.

I'm have contact info for all, am going to add dates of all visits with reasons for visit for a quick reference. There will be an About Me page at the beginning with all pertinent info including blood type, allergies, diagnoses at a glance, doctors' phone numbers, and height.

My husband's and son's have the same information, sans Allergist and Physio, and both of their medical histories fit in one small notebook apiece, thank goodness. Theirs are MUCH easier to organize.

This has been my weekend.

I have these windows of brain lucidity and absence of anxiety/overwhelm where I can actually manage these types of things, so I am taking full advantage. I don't know why I felt the need to share this other than I am feeling pretty darn accomplished right now, because I have created a system of organization that makes complete sense and also makes everything really easy to find. I'm not finished, but now I will have ALL of our medical records for the first time in EVER, and that is pretty amazing. I just have to call a dozen places Monday to procure said records, but this has been put off for the longest time because I couldn't remember who to call - but now I know!

Thursday, April 16, 2015

Throw Back Thursday - Angry Birds Edition

Angry Birds weren't the first plush I made, but they were the first group of plush I attempted. These are sort of great starter plush because they's almost all round, and their features are fairly simplistic. My only problem was not making them too big - I sort of think I did. I made these before Kiernen became so interested in being an actual collector. Before he had a preference for store-bought plush for their collectible value.

I made all of these around Fall/WInter 2012.



Bomb Bird


Orange Bird


King Pig


Blue Bird


Chuck


Red Bird



Blue from Rio (this one had the most difficult details to get down)



Ice bird



Green Terrance

Monday, April 13, 2015

Everything is Awesome!

My family are HUGE LEGO fans. I mean, we pretty much embrace almost anything LEGO, and we have invested so much money in LEGO sets, videogames, apparel...yeah, we're fans. We're such fans that they know our family at our local LEGO store, and we get little special favors at events on occasion.

And remember how my kiddo is a huge plush collector, and has this awesome insanely large plush collection? And how he loves having plush of his favorite characters? 


Well, after we saw The LEGO Movie, we were lamenting that LEGO doesn't make plush...and Unikitty is a character that was born to be a cute cuddly plush, right? SO *I* made her into one, because Kiernen and I both wanted it to happen, if I'm honest. 

Everything is Awesome!

She stands 18" from bottom to top of her horn, and is Unikitty through and through. 



From the side


A close-up of her face. For being all rectangles (and a few circles), she was NOT as easy as I thought she would be to make! But she was worth it! 




Just ask this happy fan!

Maybe I'll make the other versions as well, one of these days. I'm thinking about trying to make them a bit smaller and more portable. We shall see what the Spoons allow!




Spoonikitty! Or How I Turned My Illness into a Rainbow Zebra Unicorn Butterfly Kitten

Here's the thing about chronic illness that no one ever tells you: it's like those potato chips: no one gets just one. No one with chronic illness has just the one thing happening, or just the one diagnosis - they ALL have comorbidities.

In case you're not sure what that means, comorbidity means the simultaneous presence of two or more chronic diseases or conditions in a patient. I have yet to meet a spoonie (that's what we call ourselves, us chronically ill folks, I'll get to that in a second) who has less than three chronic illnesses. For example, I have Mast Cell Activation Disorder, Ehlers-Danlos Syndrome, Hypothyroid, Chronic Fatigue Syndrome, and Multiple Chemical Sensitivity, just to name a few. Many have overlapping symptoms, and maybe some are really a symptom of having the others. They're all related, but a person can have any one of my diseases without having any of the others. Lucky me, I hit the jackpot and got ALL of these (plus some I didn't name!)
Maybe there is that one person who just has the one thing, but I assert that if that is the case, they would be the exception rather than the rule. 

But I digress. My point is, we are many-faceted, we spoonies. Multi-layered. Complicated. Delicate snowflakes. Rainbow unicorn butterfly kittens.

And one day, someone posted this in my facebook feed:



And I saw it and said "YES!"

And then, "I must make that into a plush....only it needs to also have zebra stripes.

Why zebra stripes, you might be asking?
Want one? I'm selling them, too! In my Etsy store. 

The zebra is our mascot. There's a saying in western medicine, "When you hear hoof-beats, think horses, not zebras." It's meant to make doctors think of the most common causes of symptoms, not the rare ones. It often works - but zebras, though rare, DO exist. Doctors tend to forget this at times, which is why so many chronic and invisible illnesses take YEARS to diagnose. 



For many of us, this creates medical PTSD - not being believed, undergoing test after test, or worse, being told it's "all in our heads". It ISN'T. Our illnesses are real, and once we DO finally have a diagnosis, our lives are STILL spent in doctors offices, hospitals, physical therapy offices, and therapists' offices (for all of the medical PTSD and living in an ableist world with a disability, and all we've lost to these illnesses). 

Want one? I'm selling them, too! In my Etsy store. 
Sometimes it can help to know that we are not alone. That there are others like us, who have undergone the same arduous journey, who really GET what it's like to live with chronic and often invisible illness, who are cheering for each other, supporting each other, wanting us to do well and live the best life it is possible for us to live. 



That's where Spoonikitty was born. 

Want one? I'm selling them, too! In my Etsy store. 
"You keep talking about spoons...what on earth do spoons have to do with chronic illness???"



Well, a woman named Christine, who lives with lupus, wrote The Spoon Theory, which is a brilliant explanation of what it is like to live with a chronic illness. 

And it caught on like wildfire, spreading throughout the chronically ill like a beacon of light: We Are the Spoonies. 

Want one? I'm selling them, too! In my Etsy store. 

Spoonikitty represents us. And also, the support we so much need, and the understanding and love we have for each other. 



Spoonikitty is meant to offer comfort. And the reminder that we are all out here rooting for each other. Even when it's crazy hard. 

Want one? I'm selling them, too! In my Etsy store. 

Also, Spoonikitty is super adorable. And not just for us - for everyone. Everyone needs comfort and support every now and again.

Want one? I'm selling them, too! In my Etsy store. 

A portion of the proceeds go to paying for physical therapy and my mountain of medical bills. 



This is a detail of one of the types of wings. All are unique, so yours may vary. Also if you don't see the one you want in the shop, let me know, I'll make the one you prefer. I can do all one color (zebra-striped or plain), too.

They're delightfully snuggable. And unique in every way, just like you. And me.