I Went and Popped Some Tags!

The other day I had such an amazing #victorycheck that I was buzzing from the high of it the whole day! Another level of healing reached, folks, it just keeps getting better!

When I go out into the world, I still go out as a chronically ill human to a degree - I always have another adult with me just in case, I usually have anxiety about going to new places - even with my family. It's just a part of having lived a life with chronic illness for so many years - even though I am healing, everything is still all in baby steps.

I'm still at home most of the time, because healing is my full time job - I need to be at home to prepare food, to make sure things happen in their regular routine, to make sure I listen to and care for my body properly, to get enough rest. It's not that I NEVER go out, it's just that going out generally takes a deal of preparation beforehand, I don't generally "just go out really quickly" and definitely not spontaneously. At the very least a cooler needs to be filled with fruit and drinks need to be on hand for hydration for anywhere longer than an hour outside of my home.

And that works for me right now, it's a good thing. I'm happy with that and I feel good about how things work.

My husband does a lot of the grocery shopping and errand running, because he is much more used to being in the world and gets less exhausted by it - and most of the places we get food are also really conveniently located close to where my husband works, so it's easy for him to just run out at lunch or after work on the way home.

But the other day my son pre-ordered a video game he was super excited to get, and they are almost always released on a Friday. My son of course wants to go pick up said game as soon as the store opens, which is 10 AM - while my husband is at work.

 So it was up to me, and I felt like I could do it. We drove the half hour to Best Buy, just my son and myself (we since learned there's a closer one but no big deal, we'll know for next time). In the past, electronics stores have just been a big no for me - I couldn't even enter them with a mask on from all of the plastics, EMFs and radiation happening in there - there are certain electronics stores I couldn't even be in the parking lot of, my body would receive so much damage from being near them (Fry's).

But I've been healing. I've been filling my body with healing foods almost exclusively. I've been doing so much work, and I've been feeling so much better. And that day I felt like I could do it. It bears mentioning that it's been months since I've worn my Vogmask anywhere, to the point where I've at times even left my purse at home - my purse that contains the masks and my EpiPen most importantly. Because I haven't needed them, I haven't needed my mask to enter a building in months! Even Target, which tends to be really difficult for me. Even Costco, with all of the tires and electronics....no mask. AH-MAY-ZING!

I'm thinking I'll just go into this Best Buy, we'll get the game at the front of the store where you pick up orders, and we'll go - no lingering, I ought to be able to handle that. And we DID go in and pick up the game - and I'll say it was surprising just HOW good I felt - like I was in SUCH a great space! I was chatting with the employees who checked me out - they were so friendly too - and I felt ZERO anxiety. Double take on that one, because it's unheard of for me - NO anxiety whatsoever.

!!!!!

And THEN I needed to use the restroom (I drink SO many juices and smoothies and teas! LOL), which as it turns out was at the very back of the store. Okay, I'll just bolt through, I mean as much as I can bolt - which means walk fast really. But I didn't need to. I was noticing that I wasn't feeling affected like I have in the past - I was still fine. And when I came out of the restroom, we actually even browsed a little bit and found a plush my son had been wanting, so we got that, too.

And when I left that store, I was feeling great about the whole experience, because I'm so very aware of what I had just accomplished there. Again, before the Medical Medium protocols, before the healing plants, there was just no way I could have even left the house, let alone do all that I just did, with no other adults.

And then we were going to hit a second store, which I quickly realized was in the mall, and we decided to find another location for that one....but in the meanwhile I spotted a thrift store and I just decided to take a look. I've been looking for a couple of items that I knew I could find in the right thrift store, and this was one we hadn't yet tried. And I was feeling SO good...

So I did it. And not only was I able to go in and be inside that thrift store, but I was able to browse, and find not only the items I was looking for, but a couple of cool scores for my kiddo as well (who was out in the car playing his new game). I even bought the first items and came out, got him from the car and convinced him to go back in with me to see if he wanted the things I'd found. So I went in TWICE and stayed long enough to browse through the store. And no brain fog, no migraine, no headache at all, no feeling sick or losing my ability to breathe. None of the things that would have happened before.

My body is healing! Another layer of achievement unlocked! I can thrift again! I'm gonna pop some tags...woot!

I was on cloud nine after that, for the rest of the day. I did that! Me! That was so huge! I was so proud of myself! No anxiety! No other symptoms! No crash the next day! No crash even when we got home! Each time I try a new thing that I'd lost, I'm able to do it! And I seem to intuitively know when I can, too. So I'm regaining trust - with myself and the world. That's gigantic. That's miraculous.

I wish I could thank every employee I interacted with at both Best Buy and Savers, because they were all so incredibly friendly and helpful. I know they probably have no idea how much that means, and how much of a positive impact they had on me that day, how much they helped me reintegrate into the world again, and take those steps. I wish I could tell them how important it was. They were like angels helping to make my way back into the world and make it as easy and pleasant as possible.

Well, I'm telling YOU, whomever is reading this. The fact that they were friendly and kind and chatty with me, that was huge. It helped me so much. And maybe it was also because I was in such a good space that day, it just felt like the stars aligned for me, to make everything work. Knowing that I could do that makes me know I can do other things too. It's so wonderful to see this healing in action!

Sometimes I still cannot believe my life. I'm still blown away that I am healing a whole page of diagnoses that the medical community - allopathic and alternative - had no idea how to help. I'm still amazed and awed that I can do these things again, at how much health is returning. I'm so so grateful for all of it. To myself for listening to that voice telling me to do this. To Anthony William, the Medical Medium, for literally sacrificing any semblance of a normal life to take on this gift for US, to get the information out there that WE CAN HEAL. For my finding and being able to read his book despite all of the brain fog at that time. For the whole community of people who are also healing this way, and for the social media that connects us. I have never found a more supportive or helpful community of humans in my life - all connected by one thing - healing chronic illness.

Sometimes life really is good, and I'm so happy that I still have the ability to see that.

Healing in Unexpected Places

Protip: Do NOT do an image search for "mole on my bum".
Cannot unsee. Can. Not. Unsee. 

I just had to post a little update because I noticed something new that healed. It's something I was hoping would go away, hoping would heal, but it was one of the "least of my worries" so to speak. I had this mole underneath my bum, where my bum meets my leg. It was one - I've never seen it, mind you, but it stuck out and felt like a skin tag of some sort. I could pull at it and get it in my fingers but I couldn't get rid of it. I haven't always had it, either - it just appeared one day a few years ago and wouldn't leave my body. I hated it, but it was a minor nuisance compared to all of the other health condtions I had going on.

The other day I reached down to the area where that mole is and.....it wasn't there. I thought, "Am I feeling the wrong side? Is it on the other side?" I reached to the other side and nothing, so I felt for it again where I always remembered it to be. Nothing there. I was quite surprised, so I had my husband take a look, and he confirmed that now just looked like a little flat mole, like the other "little brown dots" I have on my arms. It's gone! I don't care about a little brown dot, that horrid skin tag sticking up mole is gone!!!

I just remembered I also have one on my head that's more solid, and that one has always been there that I remember anyway. I felt that one and it's shrinking too - now instead of something I can get my fingers around, it just feels like a little bump, like a mosquito bite or something.

Also, I don't know if it will be noticable to anyone but me, but I've been losing weight as well. It took a long time for my liver to clear out enough that my body could finally start releasing fat - boy, did it. But finally, finally it is. I don't own a scale so I have no idea how much, but I can see my belly deflating, my clothes are loose, I can tie my kitchen apron tighter around my waist. 

These are not my toes. Mine are short and stubby.
But this simple action....we so take for granted. 

Oh, and another thing that has happened - I can cut my own toenails again! I wasn't able to for a long time because of my Dysautonomia/POTS - I'd get too dizzy trying to bend in a way that allowed me to reach them, and my body was in so much pain that I couldn't properly bring them up to a reachable level. It just didn't work for me to do it myself. So my husband was having to cut them for me. And it is so weird to have someone else cut your toenails when you're used to doing them yourself - it was not something I enjoyed at all. But now, no dysautonomia, no body pain to prevent free movement, and I can again reach, bend, cut my toenails myself! Ta-daa!

!!!

Holy schminolies. 

I just....how cool is that!?! Medical Medium healing protocol for the win! 

Those seemingly little things are huge. And that's progress -  that's healing. That's part of what eating healing foods, taking healing supplements, and knowing the root cause of all of my issues is doing for me. Knowing what each food does and how it helps me, knowing that my issues are viral and that they are being taken down by everything I eat or ingest, it's all a part of my healing. When we know what the root cause of our illness is, it allows the body to target that thing and heal more powerfully - faster even. All of it makes a difference, it all matters.

And each little step along the way is bigger than we know. That little mole? Huge that it's gone. Being able to cut my toenails myself? You don't know how much it means until you lose it. But I'm getting it all back, baby. Little by little, step by step. I'm reclaiming my health and my life, and it feels amazing when I can see physically that yes, look, this is still working, this is still happening. 

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. 

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!