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. 

day of MRIs...need spoons!

Last month I went for my Day of Scans...I literally spent my entire day in this machine, with only a couple of breaks - one of which was to do a CT scan in another machine. I drove three hours, getting up before dawn to endure this torture. It was a very interesting experience indeed - one I never want to repeat.

This machine is an upright MRI machine  - used for diagnosing Chari Malformation, among other things. So after all these cans last month, I then got to wait around thinking I might, in addition to my ever-growing diagnoses, have Chiari Malformation...which would mean likely a need for brain surgery. You can maybe imagine my state of mind.

My geneticist, who ordered these scans, called to let me know that my insurance now covers telemedicine, which meant I don't have to drive the three hours in a different direction to go to his office for the results - I could just have a skype call with him instead! I am loving this insurance company and what it covers. I'm told this is the result of The Affordable Care Act, so thanks, Obama!

I got my results the other day - no Chiari Malformation! YES!!! But...ovarian cysts instead. not what we were scanning for, but there they were. And...this is something I'm not really surprised about. given my utter inability to lose weight no matter what I do or eat, and my insulin resistance, I'm pretty sure that's PCOS...I rechecked the symptom list and I pretty much have every single one. Yet another dx to add to my ever-growing list. This is NOT ever what anyone wants to collect, let me tell you.

So I made an appointment with my primary, who can also do GYN stuff, and mentioned PCOS. W're going to go ever allthethings I've learned since my last visit with her and get her really coordinating my care...something I seem to need - the one to oversee all the others. I don't think she knows about mast cell activation disorder, but I do think she is willing to learn, so it's a start.

I just keep hoping that as we keep collecting puzzle pieces, one day we will be able to put them all together and find the thing that will help me lose this weight. I think we're getting close, and that it has to do with Dysautonomia/POTS and PCOS....but I have no idea what the solution is yet.

Ever forward. Ever exhausted. Spoon!

mast cell face!

See that photo? that's my mast cell face - see all the pink around my cheek and chin? Itchy, red, looks like I have beard burn? Mast cell reaction, to I don't know what. Too many histamines somehow. Something I ate? Wish I knew.

There will be a time when I'm not still pursuing the diagnosis, but have been diagnosed. We will know as much as we can know, and this will just be "my life". And there will be coming to terms with what that means. Having the diagnosis of EDS means there are PT options that can help with strength and pain. Mast cell disorders have some pharmaceutical mast cell stabilizing interventions, but there is no guarantee they will work. They COULD cause me to be less reactive to food and my environment, and ideally that's what will happen, but no guarantee.

Right now, though, my life is a series of doctor visits, physical therapy visits, and lab visits. It doesn't really seem like I leave the house anymore except for these visits and grocery shopping. Being a spoonie, with a very limited number of spoons, and usually crashing after these visits, means that I don't really have the resources for anything else. Also having gotten sick almost when we first moved to this area, I have no former community to draw from, or already established friends, save for one. And I am really so very burnt out on healthcare facilities.

Our little family is a sort of island - our house is this bubble we live in, and we have all found ways of coping with having to be inside it so much of the time. And really, inside - because our neighbors sometimes have fires - either on their property or in their fireplaces, it doesn't matter - the smoke from them causes me to react just the same. And other times a neighbour will use some sort of horrid chemical on their lawn - it killed my bees a few weeks ago when someone used something. Those days I can't even go outside or open my windows.

Much of the time technology is all that keeps us even remotely connected to the outside world. We do have a couple of friends who are kind enough to be willing to drive to our home and just visit us here, and they have been a great girt - I cannot possibly convey to them what an incredible difference they make in my life just by being willing to do that. But most of our lives are lived on Facebook and Skype, and it's really difficult not to feel pulled down by the lack on actual human interaction. I mean sure, we have each other, but variety is the spice of life, and we are all at heart pretty social people. My husband at least gets to work outside the home and see his coworkers daily - sometimes I think it's the only thing keeping him from imploding. 

It's possible that a wheelchair or a scooter is in my future - whether near or a little bit farther I'm not yet sure. I do know that right now, even a day at a science museum is beyond my capacity. And by "day", I mean less than two hours. Walking the hard floors and going from building to building was just more than I could manage, not to mention the lights an noise. But if I had a scooter or wheelchair, I wouldn't have to expend so much energy, and I might be able to manage more days out doing fun things, rather than just going to see healthcare providers all the time. a person NEEDS joy to really and truly heal.

I still don't know what might be my new normal and what might be temporary. What can be helped and what needs to just be accepted as the way it is. How to process any of it. How to allow it into my world and embrace my life.

So as we continue down this road with the doctors and getting the diagnoses happening, I might be getting more of these resources, and figuring out more of these things. In the meanwhile, my joy is in listening to my son Skype with his friends, creating things with my hands, snuggling my animals, moving my body in whatever way I am able, and connecting with my friends on Facebook. 

well, I was going to write about RVing, but...

Keep Calm and Save Spoons by ThePaperPoppyStore on Etsy

Sometimes it's difficult to remember how to keep a blog. Life gets in the way - health, trying to stay afloat, just staying functional. I struggle with chronic illness. One of the myriad of reasons we are wanting to get on the road is to find an environment more conducive to my health, as I am incredibly sensitive to mold and wet climates (NOW you tell me!). The past two years have made me very aware of just how much my environment IS affecting my health.

Have you heard of The Spoon Theory? I hadn't, until a few months ago. But it is a brilliant theory, in my opinion, because it really does explain what life is like when one has a chronic illness. When my own husband read it it helped him understand what I am going through in a much more profound way. I highly recommend clicking on and reading (and even bookmarking) that article, it is well worth it. Go ahead, I'll wait.

You see? That's it. That's my life now. Most days, even though I am probably sitting here on the sofa doing nothing, because that's what I have the spoons for, I cannot even brain enough to write blog entries, and instead I either read Facebook because it's brainless, or watch silly sitcoms, because they keep my mood up. If I do have the ability to brain anything, or any energy, I'm not at my computer - I am doing stuff with my son or getting some laundry done or catching up on chores that pile up while I'm down. (My husband, though valiant and tireless during this period, is only human, and cannot manage allthethings while also working outside our home full time).

And then there are days like today: my brain works, but my body feels exhausted - like I've been hard at work or am completely sleep deprived, despite having had a full night's rest. I'm just tired. But deeply, bodily tired, like I just can't move, and even walking to the bathroom is a LOT to ask of my body.

The official diagnoses are: Fibromyalgia, Hypothyroid, Adrenal Fatigue, Chronic Fatigue Syndrome, PTSD, Anxiety, Sleep Apnea, Bursitis and Depression. It seems that when one has one major diagnoses, they become like those famous potato chips - no one can have just one. I also have Multiple Chemical Sensitivity, which makes going out in the world akin to trying to navigate a minefield: all of the scents, chemicals, lighting, sounds, emissions....it overwhelms my already overloaded body and it can take me down for days. I have to be so careful about where I go or who I am around (perfumes and colognes), or what I put into my body. I can't go out at night because the lights from the cars against the darkness will send me into migraines. Which is almost irrelevant, because what little energy I have tends to crash around 3pm, leaving me unable to do anything but rest for the rest of the day anyway. What social life? 

I use a combination of allopathic (that's traditional western medicine), biomed, naturopathic and chinese medicines to foster my healing. I see a therapist, and a GP, a naturopath, a rheumatologist, sleep experts, a chiropractor, and massage therapists just to keep at this level of function. Because it was even worse before. My brain fog was so bad and my energy was so low that even doing something as seemingly simple as typing a blog post seemed herculean. Everything in the world was overwhelming. My anxiety was so bad that even making a phone call seemed impossible. My husband was making most of my appointments and then even taking off work to take me to them so I would be able to go.

I take an amount of supplements I cannot even talk about because it is so far beyond anything I ever thought I would see myself do. Food is medicine if one's body is functioning properly and can absorb the nutrients in the food...but when one's biochemistry is all out of whack and one's health is a multi-layered onion...well, it seems food can be thought of as Step 1. I am very VERY careful about my eating - my body does well on only a handful of foods, all of them grown in nature and unprocessed. I have learned in these past two years what my triggers are and I work hard to avoid them all.

My goal now is to keep working and keep finding where I am unbalanced, and do my best to correct that imbalance. So that I will have energy again And be able to move my body again. And go out into the world safely again. And I can see that it can happen...albeit it slowly, I can see that it just takes careful tweaking of this and that until it takes me up a level, then I can address the next layer, and so on. And as much as I love my beloved Pacific Northwest, I think that being in the wet and mold and lack of sunlight isn't working for my body, and I need to find somewhere that I can heal a little faster and more completely.