MCAD and High Histamine Foods on the Medical Medium Protocol

Three Steps Forward, Two Steps Back...One Step Forward Again

Sure enough, once we moved to the new RV Park, within just a couple of hours I was already feeling so much better and less pain. And after being here a couple of days now, still maintaining that improvement. Pain in my body is almost gone really, and fatigue as well. I do keep waking up with a headache, but it does also mostly go away once I've been awake awhile. I'm not sure exactly what that's about.

It's been raining here nonstop and that affects me differently, but not nearly as adversely as those power lines. I just get a little more tired and sleepy and want to snuggle under blankets and have much less humidity in the air. But I'm functional. 

I had an amazing day visiting my family yesterday - a day that makes me wish hard that our time in this city could be for longer than it is. It feels SO short this time. It's been several years since we've all seen each other and there is so much to catch up on. Would that we could be here a month so we could really start to tackle it.

I still have many limitations that prevent me from being able to see all the people I wish I could see here. People have to make changes to see me - they have to be scent-free and willing to come to us in the RV park, because other than my Mom's house I'm not sure where I could be safe. I have to be extra super careful about what I eat and making sure to take all of my supplements (and getting in extra) so my immune system can handle all the stress of new and different situations.

Traveling while healing and detoxing is not exactly ideal, but it is doable if I just make sure to prioritize my health and really be careful about listening to my body's needs and taking care of them.

Before when we've visited the way we would handle being able to see many people at once is we'd have a gathering somewhere - usually a kind friend would offer their home or we'd meet at a park or something, and invite friends to come, so we could have a time of seeing them. But my body cannot handle that this time - there are too many variables that could happen in a group (like scents and colds and such), and for my health I just cannot do that anymore.

I'd like to think there will come a time when I will be able to again. Once I've healed enough to have reached a stable space and be back in the world safely and fully again. I have real hope that it will happen in time.

Until then I am mindful, paying attention, making sure I'm eating the most healing foods (as outlined by Anthony William in his books, "Medical Medium" and "Life-Changing Foods", as well as in his blogs and podcasts). I'm eating lots of raw, since my body seems its best with that - and potatoes at night. I drink my celery juice and heavy metal detox smoothie every morning, along with my supplements and herbal tinctures. I don't think I've ever been SO diligent about making sure everything that goes in has a healing purpose since I did the Medical Medium cleanse. And that was just the foods, no supplements then.

But it's important - this is how I get through all of this okay and continuing to heal. I couldn't have done this at all a year ago. I am so grateful for all of the healing information I DO have now thanks to the Medical Medium, because it has gotten me this far. Being able to travel at all. Being able to see my family again. Having days like yesterday with laughter, love, family, it meant everything to me.

A year ago I wasn't sure I'd ever even be able to see my family again. I'd lost hope that I'd ever find healing or get better or be able to leave my house safely again. So to be able to do all of those things with some accommodations (everyone was scent-free for me) has been a gift I'm eternally grateful for.

Photos to come in a couple of weeks, once they've been processed. 

My Chronic Illness is Not a Weakness

Lately I have been staying away from social media for the most part - especially Facebook. Pinterest and Instagram are pretty benign usually, so I feel like those are safe places to venture, from a mental health perspective. But then every now and again someone I follow and love will post something that is completely triggering to me, like this:

"Asking for help is not a sign of weakness. Suffering in silence is."

Now, on the surface, and to the first part of the quote, I'd say yes, this is true. It is not a sign of weakness to ask for help. I completely agree with this.

"Suffering in silence is (a sign of weakness)."

A Healthy Place

Herein lies the problem. This kind of statement is reductionist thinking. It assumes SO MANY THINGS about a person's situation. It implies privilege: The privilege to have someone to ask. The privilege to be able to ask. The privilege of having resources. The privilege of having your needs met. The privilege of community.

I cannot tell you how many times people with chronic illness DO try and reach out and ask for help, and are met with nothing but platitudes and lovehearts on the internet and basically "we can't be bothered, but we're sending our prayers..." And hey, I'm all for sending prayers and good energy and good vibes - that DOES make a difference. 

AND. I'll just use my own life as an example here: we really need someone to come and mow our lawn, clean up the sticks around the yard, trim our trees, trim the hedges around our house, clean the inside of the house, organize around the house, clean the RV, finish painting the RV, assemble all the RV cabinet doors, move everything into the RV,  help us get groceries, cook, take a bunch of stuff to donate and to the recycling center.....do you see where I am going with this? Lovehearts and prayers aren't going to get this stuff done. Money would help, because then I could pay someone to help, but it would need to be monthly infusions of money, not just one time. These are ongoing tasks that need doing all the time, not just once or twice. (Until we get the house ready for market and sold).

See, that's the difference between families with chronic illness vs families undergoing a single event trauma. I've noticed there is a LOT of help for single event traumas - a death, a birth, a move, a marriage, a divorce, a fire, a broken leg, a surgery....these are things people will rally for. There will be meal trains and lawns mowed and donations and needs met. As long as it's on a temporary basis. But when a family is afflicted with a chronic illness, and can't necessarily afford to pay a housekeeper or a caregiver or any of the many things that need doing, basically what happens is everyone just sort of disappears. The help well runs dry really fast. And that family still needs help, possibly more than anyone could ever imagine, because if there IS one able-bodied adult in the family, that adult suddenly is doing the job of five people rather than just the one they were doing before.

And because it is not physically possible for one person to do the job of five people  a LOT of things fall through the cracks. Like housekeeping (because buying groceries and feeding your family are more important than vacuuming, and yes, you DO have to choose).

And you might say, "Well, why don't you just ask your friends for help?" Believe me, many people HAVE said this to me.

To which I would answer, because none of them are able-bodied enough to help. You see, we had just moved to this state when I got REALLY sick, and we don't really know anyone here other than my husband's coworkers. And they, unfortunately, are NOT a resource we can turn to. I am mostly homebound, and most of the community I have is also online, chronically ill, and homebound - which means they are all in the same position I am. They need the help as badly as I do. I have no family here, and the family I do have is also in the same position - different illness, same needs. We do not belong to a church, we are not part of any community groups. We are an island of our little family. 

I DO have friends where we used to live, and I'm sure that if we were still in any of those places, those friends would help - but that doesn't do me much good here, hundreds of miles away from them.

Other reasons : If one is chemically sensitive and/or has mast cell activation issues like I do, it's not as simple as just letting anyone in the house to do anything. They need to be someone we don't react to. Completely scent-free. Not just perfumes, but also detergents, makeup, hair products, clothing, lotions, all of it. And not just scent-free but also chemical-free. No petrochemicals. No gluten. 

This may sound easy and simple but believe me, it's anything but. We've had a hell of a time trying to find a realtor to sell our home because of my sensitivities, even though once it's on the market it won't matter because we won't be in it. We need someone to be that scent and chemical-free beforehand, though, because there is paperwork and showing the realtor the home features and whatever else needs doing with them. This includes their car, because whatever is in their car will be on their person once they've ridden in it. And their purse, if they carry one. Purses are notoriously filled with chemicals and scents. And jackets, that never get washed.

The yard is a little easier because they won't have to come into the house - but even then, if the landscaper is wearing a lot of cologne and my husband goes out to speak with them, he will have to change his clothes before he can come into the house - do you see where it begins to get complicated? 

And if you're thinking why not just ask people to be scent and chemical-free? Believe me, we have. Thus far, several realtors have refused to work with us, and we don't have the spoons to keep reaching out over and over again. And this is just the realtor - someone who will make lots of money off of helping us. Then there were the ones who insisted they WERE scent-free, but literally the second they got out of their car nine feet away from me, I could smell them, and immediately began to get a migraine from their perfume (or detergents or Febreeze or whatever in the world they were drenched in - that they kept insisting they weren't wearing.

We DID finally find someone who has the same kinds of health issues in their family, and if we can ever get this house ready, she will work with us. But it literally took us months of searching, with the limited and nonexistent resources and energy we don't have, to find her.

But without anyone to ask, without a community, how on earth are we supposed to get this house ready to sell? My husband works a full time job outside the home. When he comes home, he makes dinner (I am no longer able to cook or prepare food), plays with our son, runs errands, does whatever tasks he can manage before he has to go to bed and get up and do it all again the next day. His weekends are spent playing catchup, just trying to put a dent in the myriad of things non his ever-growing, unending to-do list, because even though we need to get the house ready to sell, there are still ALL of the maintenance things that need doing from everyday living in a house with a family.

I'm homebound. I cannot drive anywhere anymore. He has to drive me to all of my appointments, cook my food (I'm on a very specialized and specific allergen-free diet to try and manage my reactions, allergies, and inflammation), play with our son, take him to all of his events and appointments, do all the outside work on the house, and all the cleaning, and and and....he is exhausted. He gets no time to himself, ever. Believe you me, if there were anyone at all we could ask locally, we'd have no shame in asking - WE NEED THE HELP. BADLY. But when there is no one to ask, how is it weak not to be asking? 

Image © Gemma Correll

We don't have the privilege of resources, or community, or even having anyone to ask. And we are not alone in this. I have an entire community of online friends who are chronically ill and in the very same boat. We aren't weak. We are warriors. We are fighting a battle every day that everyone else has abandoned us to fight alone. We need our friends more than we ever have, and they have all but disappeared. We reach out, we say, "Hey, we're drowning here," and we get crickets. Eventually we stop asking because the rejection hurts more than the isolation does.

It's not our fault. We didn't ask for this. We want to live lives of joy and fulfillment, not quiet painful desperation. But we weren't given a choice. It's easy to sit there on your high horse and judge people for not "just doing what you tell them" (like asking for help), but how about reaching out and helping someone who is struggling instead? How about making the effort to help someone who really needs it, instead of judging their choices? It's impossible to know what these families are going through without living it - it's easy to say "why don't you just" when you have no idea what it's like to experience what they are experiencing.

One thing people really need is just to be believed. If you do offer help, even, and if the family says, "That won't work, but thank you for the offer," it's because logistically what it might take that family to accommodate the help might be more than they are able to manage, with everything else. It's this weird double edged sword - we need the help, but sometimes our sensitivities won't allow us to be able to manage it - it's difficult and unfair.

But still offer if you can - sometimes even just knowing that someone is willing is everything to us. And not all chronic illnesses involve having such sensitivities. 

No Sleep Wakes the Bear

From Hyperbole and a Half

On high pain days, I am most definitely the Bear. Especially when I haven't gotten enough sleep. Since I am The Princess and the Pea, any number of things can affect my ability to experience a decent night's sleep: pain, anxiety, temperature fluctuations, allergens in the air, or my restless cat...

WIth lack of sleep comes more pain. This experience causes me to alternate between total silence, roaring at everyone and everything, and sobbing uncontrollably.

Friday, after a terrible restless night (temperature fluctuations and cat), I was yelling at the dog, snapping at my son, and later sending angry rage texts to my husband about the hundred different things I managed to find that he didn't do, or did wrong, or just didn't finish. And when I wasn't raging in some form, I was utterly silent - in too much pain to speak or do anything.

Friday night, no sleep again. More temperature fluctuations, and the most restless cat ever. I'd close the door to keep her out of the room, but that 1) causes the room to get way too hot and stuffy and 2) causes her to meow at the top of her lungs outside the door. She has no front claws so cannot be put outside to fend for herself in the night, so it just happens sometimes.

Two days of not sleep in a row leaves me a complete mess. I cannot even think, but the pain also makes it impossible to rest and actually sleep. My son and husband took the dog to her first pug meetup in months on Saturday (she can go again now that she is spayed and healed), and left me "sleeping". Since my husband was supposed to wake me up to go and didn't, I felt a strange combination of relief (going anywhere with people is a minefield of exposures for me) and sadness at having been "abandoned" by a family who I "obviously don't matter to".

I'm not in my right mind when I have these thoughts. I know this. I'm crazy with sleep deprivation. Intellectually I know that my thoughts are a product of said deprivation, including my not mattering to them at all. But my brain tells me it's all true, and produces movies and movies of evidence for me to peruse - all of how I am just a burden to them and that I matter to no one and that this planet would be so much better off without me on it. That the real reason my husband stays with me is not because he loves me, but because he would feel guilty that there is no one to look after me if he doesn't do it.

That the reason I am alone is because I am so desperate for human contact and interaction that no one wants to be around me. Even my therapists have abandoned me in the past, and I haven't been able to find one who can help anything anyway. That my son would always rather be with his Dad because he is able-bodied and does fun stuff. 

It's a horrible feeling, the feeling of uselessness. And every person I've ever interacted with who has chronic pain or illness experiences this at some point. Sometimes regularly. But that's what chronic illness does. It messes with a person's brain. 

I wouldn't wish this feeling on anyone. I'm so relieved when it passes (I get a couple of good nights of sleep) and my mind comes back again. 

Life in Slow Motion: My Power Animal is a Sloth

I think I have a new power animal. And I think it's a sloth. Apparently having a chronic illness, especially when it hasn't been symptomatic from birth, can change one's primary power animal. But look at this little guy - there are worse things to feel like a kindred spirit to, right?

Look at that face. I aspire to have the contentment expressed on that face. I strive to embrace my inner sloth. Right now I still seem to be kicking and screaming, because I still think I should be a tiger. Fierce and strong and lithe and powerful. In my youth, all the way until I had children, my power animal WAS a tiger. And in my heart of hearts, I still am. Somewhere inside me, the tiger still exists.

Hm. This is taking a direction I didn't expect it to, so let's explore and see where this is going.

So yeah. In my youth, I believed my power animal to be a tiger. I always loved tigers - giant cats, so cute and adorable, with intense eyes and so powerful, capable of untold carnage. In other words, never mess with a tiger.

I used to draw tigers on everything, everywhere - my first "handle" back in the day, when *gasp* BBSes were the first way to connect to peers on computers, the first chatrooms were boards like "Junk Drawer" and "Outer Planes"....my handle was even Tyger Chaz. 

See how cute and clever I was spelling it with a 'y' like that? Cute AND smart. Off the beaten path. Doing my OWN thing. Oh yeah, I was such a trailblazer, such a rebel!

 But I digress. (Again! What a surprise! Do I even HAVE the neural pathways it takes to stay on a topic anymore? Not if this post is any indication of said pathways. Did you know I started out with the intention of posting about ordering glasses? Until that sentence, have I even mentioned glasses once? 

And I seemingly won't, because this post just became something very different. Maybe that's what writing really is anyway. I digress again! 

Sloth!!!

So in my youth - tiger. When my children were born, I think I definitely went right to Mama Bear, and have pretty much stayed that way since. 

And sloth doesn't cancel out Mama Bear, don't worry - I still have all of my power animals in me somewhere. Hibernating perhaps? 

Mama Bear gets woken and takes over when she is needed. But primary right now? Yeah. Sloth.

And to be clear, I'm NOT saying 'sloth' in the way that one might refer to the seven deadly sins. NOT that sloth. I mean the kind of sloth where life has turned into slow motion. Where everything happens exponentially slower than the rest of the world, kind of like in a hospital. Or in the home of a family who has a member or members with chronic illness. Time changes, it doesn't work here like it works in the rest of the world. 

Everything gets pushed back because of brain fog and pain and anxiety and symptom flares, which are caused by so many things: accidentally eating the wrong foods, barometric pressure changes, weather changes, sleep or lack thereof, pollens and other airborne allergens, when the chemtrails are being sprayed (deny them all you want; my friends and I have NOTICEABLE reactions after they've sprayed), my stress levels, if I've had a big emotional reaction to anything, exposure to chemicals (yes, even being homebound I can have accidental exposures from things like library books (molds and perfumes) and things I order from Amazon). 

So all of these things can get in the way of my having a "Lucid Day". And what happens is everything gets done in slow motion. What takes regular, able-bodied families less than a month to accomplish takes us two years (I wish this were an over-exaggeration, but alas, it is not. Getting The RV Ready is my case file on this). My last email from my doctor that required my finding out a key piece of information before I could get back to her took me over a month. Not because the information was somehow unavailable to me, but because *I* was unable to access the information in any kind of timely manner. Brain fog is amazing the way it takes away capability. So is anxiety. 

And then I realize just how many things aren't done, or have been started and left half done, or tabs that are opened on my browser waiting for my attention. I scarcely ever know what to approach first. One of the things that paralyzes me and I can pretty much never manage to actually do is writing a blog entry. Only deep psychological exploration (or maybe just brain fog) could tell you why, but I'm not sure I'll be lucid long enough for that, so you'll just have to take my word for it that it's been darn near impossible. 

I am getting much better about forgiving myself for that, though, for not having been able to do it all, or even half of it, or sometimes even any of it. I'm better about just choosing a thing and doing that, or being okay with the derailment of my attention to something else (like how I was ordering my glasses and am now writing a blog post (or apparently three) that have taken the better part of my day now. But I'm inspired! So do it NOW, while I can.

Even when my body CAN move, it moves V-E-R-Y S-L-O-W-L-Y, because of stiffness and pain and did I mention pain? I am pretty much completely taken out of the equation on the Tasks That Require Physical Abilities front. Thinking about all of that, and also because I keep seeing sloths everywhere (why are they everywhere all of a sudden?) The thought popped into my head - my power animal is a sloth. 

And what can I do about it? It is what it is. Maybe my job isn't to try and force the Tiger to come back. Maybe it's to embrace the sloth and find its strengths. To find the way to live with my inner sloth and use what I can when I have it. Maybe this is the first step.

Here's a little fun fact before I go. When looking for photos of and doing a little light reading about sloths as I wrote this post, I found this fun article on sloths, titled: "Life in Slow Motion: the Three-Toed Sloth". I couldn't help but noticing it was published in 2012, the same year my chronic illness really started kicking into high gear. Kismet?

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! 

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. 

the diagnoses keep on coming

I've spoken a little bit about what has been going on with my health in this post, when we went to the UROCK Unschooling Conference, and in this post, when I meant to talk RVs, but instead got sidetracked by my fatigue and pain. Oh, and in this post, where I talk about why the RV, and how we need to sell this house.

And since those posts, I've been doing more investigating, more research, more doctor visits, more trying to get to the root of all of this, so somehow I can find a way to get back in balance, or at least try to, and to regain some of the person I used to be. Because everything listed in those previous posts tends to have all manner of co-morbidities, and they are all connected, but thus far none are pointing to the root cause of the problem, which is what I REALLY want to find.

A few months ago, I was led to a specialist three hours from here who is a geneticist/pathologist, who specializes in diagnosing/tracing connective tissue disorders. I was led there by members of an EDS group on Facebook, who share valuable information about symptoms, treatments, health care providers, and just support each other in general, sharing the knowing of what it's like living with connective tissue diseases.

I went to see him, he took an incredibly thorough family medical history, asked me an incredible array of my own health history questions, then ordered some tests: a cardiac echocardiogram, a standing MRI and CT scan of my whole body, which can only be gotten (around these parts) another three hour drive in the opposite direction.

I see him again on Monday the 26th, and my son is going this time, because I can see that he has the same hypermobile symptoms, and I want to know how to best manage that for him and keep him as healthy as possible throughout his life, so maybe he doesn't have to live in this kind of pain as he gets older. There is so much I could have done to support my healing had I known I had this disorder many many years ago.

Right now we are still in process of official diagnosis, so all we know for sure is that I have some type of idiopathic connective tissue disorder, hypermobile type. It could be Ehlers-Danlos Syndrome, or it could be something else. This is what the doctor is currently investigating.
Symptoms of Ehlers-Danlos Syndrome can include: 

• Severe headache and neck pain
• dizziness
• lightheadedness
• nausea and/or vomiting
• vertigo
• palpitations
• difficulty swallowing
• visual disturbances
• ringing in the ears
• sleep apnea
• impaired fine motor skills
• and/or muscle weakness
• velvety or stretchy skin

If you would like to know more, and enjoy the rabbit hole of researching for yourself, here are a list of websites on EDS:

United States:

The Murray-Wood Foundation serves as support, education and as an advocate for patients and caregivers dealing with orphan diseases not limited to but including Ehlers-Danlos Syndrome, Arnold Chiari Malformation, Tethered Cord Syndrome, Syringomyelia and Mastocytosis/Mast Cell Activation Disorder as well as providing charitable giving to other non-profit organizations for research regarding said diseases.

Ehlers-Danlos Syndrome Network has lots of information on what EDS is, the different types, how to diagnose, and lots of other resources for EDS patients. 

Medical Zebras has good info on cervical instability and Chiari issues (also linked to EDS).Pretty Ill. Dr. Diana, both a doctor (therapeutic optometrist) and a patient (on professional disability), offers help and hope for Multiple Sclerosis, Ehlers-Danlos syndrome, Dysautonomia, POTS, vascular abnormalities, Chronic Lyme, Chronic Fatigue and Fibromyalgia.

Center for Ehlers-Danlos Syndrome Alliance has EDS support, awareness, lots and lots of helpful information about EDS and treatment. 

Ehlers-Danlos National Foundation. By leading the search for knowledge about EDS, we are building a community of people who work together to effect change. 

United Kingdom

Ehlers-Danlos Support UK . EDS UK was set up in 1987 to support, advise and inform those living with Ehlers-Danlos Syndrome and help them live a full, active and positive life.   We are the only UK based charity that exclusively represents and supports people with any of the types of EDS.  This is regardless of their position on the EDS spectrum.  

Hypermobility Syndromes Association. Providing support and advice for people with hypermobility. Is good for the Brighton criteria, which is often used to help diagnose EDS hypermobility type.