It’s a Bad Brain Day

Today is a bad brain day but it’s not a bad day.
My socks are mismatched, my eyes seem detached
and I don’t have the energy to play

My marshmallow brain is stuffy and numb
My face flies in butter, with a tickle and flutter
and I think I just said something dumb.

Today is a bad brain day and I think I’m unsure
I forgot what I’m doing, or maybe undoing
I hope whatever this is has a cure.

My toes and fingers are cramping and sore
And as if right on cue they start to turn blue
And I’m ready to pass out on the floor.

Today is a bad brain day – and it’s so easy to tell
When my words slip so easy and nothing is breezy
I’m living my personal hell.

I take my lumps with a spoonful of salt
with a smile and nod and stumbles and plods
I’m living my life at a halt.

But everything is ok because it is just one day
Tomorrow is better and I’ll be a go getter
And then I’ll be able to say

That today is a good brain day and it’s a beautiful day
Thank you for caring while I have been flaring
And I’m ready to go out and play.

-Krystal Elder

Yesterday we went out, and I knew it was going to be a long day. It started with a haircut. Simple, right?

Conversing with people – some I knew, some I didn’t – was tiring. It started the day off. The scents and sprays and hair product and blowdryer heat and temperature change were all a perfect storm to start off a flare.

It’s a good thing I was well rested before that.

By the time we got to the hospital for my MRI, I was in full flare. My face was tingly, the top of my head numb, and the back of my head freezing because I shaved it. (Worth it!) The elevators increased my dizzy spells, I felt like someone was sitting on my chest while trying to navigate that section of hospital we weren’t familiar, which was confusing. Nope, it’s not anxiety. It’s just one of the signs of a flare up. Good thing there were maps and I was being escorted by my very own wonderful, good looking security personel. (He’s not there to protect me from anyone except myself, really.)

Their waiting room with family members was cozy. But going into the back, stripping down to the knickers and wrapping in a sheet was a whole different matter. It wasn’t cozy. It wasn’t warm. In fact, it was like the third level of hell, except they let me keep my socks and boots as a reward for good behavior. I was thankful that I was wearing my shiny new fancy compression stockings for a little warmth, but the sheet did little to stop the icy breeze from flowing up my light, summery, extra-fashionable hospital gown.

I had already been struggling with the pressure changes and my joints were stiff and sore from the temperature drops at night, but by the time I was called into the room my body had stiffened up and it took me forever to stand up, and for once it wasn’t just the blackout and dizziness. I begged for a blanket – I was shaking so hard I don’t believe they could have possibly done a successful, clear scan if the room itself wasn’t any warmer that everywhere else in the corridor.

I was sooo happy when she offered several warm sheets, since there were no blankets left. It was instant relief, and I was able to relax with the strange space helmet in the teeny tiny holespace they put me into. I am so, so grateful I’m not claustrophobic. Quite the opposite, actually, and I find it somewhat cozy, until I nearly started laughing out loud. The sounds of the machine reminded me of Strongbad’s retro rave.

The MRI seemed really short. I’ve had two before this – one for my knee, which I barely remember, and one for my finger to assess an infection in the joint. I recall the one for my finger taking an extra long time – I kept falling asleep, and I tend to twitch as I’m falling asleep. Of course, my hands are the most affected by this, so the techs kept having to rescan. We tried changing the radio station they had me listening to, and turning it up. I ended up singing to keep myself asleep, much to everyone’s amusement.

Thankfully, there was no twitching this time, and the scan didn’t take long at all. It’s been a few years since my last scan, but things have changed since that one, and it seemed quick and easy. Until I stood up. I felt like I was in a dropping elevator, which tends to happen often, but it hadn’t been that bad that day until then. The tech apologized, and told me it was fairly normal for people to feel dizzy after getting a head MRI. Apparently, they mess with the alignment of the ions in the ear canals, which can cause some people some side effects.

The ringing in my ears has been louder, as well. Bother. Oh well. Just one more thing.

Afterwards, we met up with a long time friend of mine from high school, and we enjoyed smooshi and snuggles at a quiet sushi place on the south side. Until, that is, my flare up became a permanent fixture on my face and my head became numb and it was time to go.

Today was a train wreck and a half, though, as I pushed further than I knew was good and the dumbs took over my brainspace. My husband went to his training class and had to work on his truck after, so I had the day to myself. It took way too long to be able to get out of bed, to remember to eat, many circles in the kitchen every time I forgot what I was doing, and nearly forgot to feed the cat entirely, even though I had his food dish in my hand. Empty. Because I forgot to fill it with his gooshy food. And then I came back upstairs to fill it, forget (again) what I was doing and went to make my own lunch, and dumped the can of salmon for myself into his food bowl instead.

Sigh. He had a treat, and we shared the canned salmon.

I’ve had a few moments of surmounting frustration, but all-in-all, I remembered to just breathe, to take it easy, and remembered that tomorrow will be better. And I’ll rest more so I can go out on Christmas with something resembling normalcy for a little while, after which we have nothing lined up again for awhile and I can recover from appointments and visiting until the next round. And who knows…. maybe I can get some fun projects done. My creativity has been itching again, and I’ve been playing around with a few things here and there. Nothing major, but enough to take the edge off of feeling useless. It’s nice to be able to make things without expectation or deadlines, so I’ve been enjoying doing the things I’m able.

And now…. more waiting. With the holidays here, the results may take a little longer than usual. If there’s something that comes up, my internist will call me in. And if not, I see him next month and he’ll run a Lyme disease series and send me off to a Rheumatologist, and hopefully we’ll be closer to getting a few answers.

Fingers, toes, ears and all of the things are crossed.

I miss my brain. I hope I can have it back to normal, one day.

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Gratitude feels like this

There was rocks and rain being thrown inside the truck yesterday. I couldn’t stop feeling wet and getting lumps stuck in my throat.

I’ve had some rough days. I’ve had friends tell me that they don’t believe my symptoms are real. I’ve had many change the subject immediately after asking how I’m doing. I’ve had some people straight up ignore me when I’ve asked them directly for something small (simply sharing a post – nothing more). I’ve had people talk condescendingly me towards me for not wanting to try a remedy without discussing it with my physician first, telling me I was giving up or not willing to get better by trying different things. It wasn’t that I wasn’t willing, but I wanted to ensure there was no (or limited) risk that my doctor might have known about before trying it. If he felt there was no harm in trying, then I’m all for it. I’ve had people mute me on social media because they’ve said they just don’t care.

Some of those things  I can chalk up to not being about me. Some of those things are limiting factors on the other person’s end, or awkwardness towards the situation, or just not knowing what to do or say. Those are things I understand, and I have no problems with.

But some of the other comments, actions and inactions hurt, and they were difficult not to take personally. I managed it, eventually, but that initial reaction felt like an icy cold slap to the face, and it stung when it came from a small handful of people I have known for a long time and I thought cared. That they didn’t is actually ok – they have things of their own to worry about, and they have their own agendas. Me expecting them to look out for me is my problem, not their’s, and I don’t typically expect things from others. I was (and still am) feeling extra vulnerable, and was grasping onto things that weren’t mine to hold onto. (I’ve let those things go. I was feisty, nervous, sad and didn’t fully have awareness of my overabundant emotions at the time. I’m human.)

But then, everything changed. And those small handful of people who I had allowed to drive me deeper into a downward spiral are suddenly muted by the huge outpouring of love and support from so many others, and from some people I don’t even know.

Seriously, universe, you have some amazing people in you. And as much as I often question the direction of humanity, this lesson has taught me that there is more kindness than there isn’t. There’s been tears and feels, but they’ve been good (if not complicated) ones.

It’s been weird for both my husband and I. Admitting to needing help is hard enough. Especially publicly. Taking help is a whole other matter. As mentioned previously, I’m one to give things away. I love it. So when people have been buying product, I’ve been wanting to give them gifts with their order, as I always do. Jess, the superhero who has taken over selling my products, has slapped my wrist numerous times for that. I gave her complete control over all of the inventory, selling, discounts and everything associated. And she’s been rocking it, without the discounts. She’s selling things better than I ever did.

We’ve both shared that we’re better at selling other people’s products than our own. At markets, I’d sell my neighbours products easier than mine. It was fun, and they were appreciative. They’d be quiet about their product, and strike up conversation a little, but wouldn’t want to be pushy with sales and allow the customer to browse. I’d pop my head over, grab my favorite product from the table (which would change with different customers) and start asking them questions about it, and commenting on the things I loved most about it. I was also sincere about it, which I truly believe made the difference.

Most of the time the customer would buy one of whatever I was oohing and aahing over.

I excel at retail sales when I have fun with them. At the sports store I used to work at, I’d focus on the customers in front of me, and not focusing on making specific sales. I worked the quietest shifts, but always had the highest sales, because they were my focus, no matter what they were looking at. My specialties were the people on a budget – because I could relate the best with them. It was amazing how much some of the other associates took advantage of people, and it never impressed me. We got commission at the time. I’m glad that practice has been ended since I worked there. The managers loved those associates for selling the high ticket items, but then they didn’t have the highest average sales.

“They are so cute, and anything has to be more comfortable than these. Where did you get them?”

I remember one elderly gentleman had come in to pick up his shoes he had on hold, and I couldn’t help but pry. He was there to purchase the newest, greatest Nike Shox, which retailed for the great deal of $299 at the time. The associate that had helped him previously convinced this man that these shoes would help his knees stop hurting while he was in the garden. The man was on disability and in pain, and he was desperate for relief.

They were basketball shoes, meant for a basketball court, with crevices in the soles where dirt could pack into and compound, rendering the “shox” useless once dirt got embedded in there. He obviously had crippling arthritis in his hands, and the work to clean the shoes in order to keep the dirt out from those areas would add to the list of things he shouldn’t have had to do.

I downsold him to a reliable, comfortable, supportive pair of $60 New Balance shoes, and gave the associate the sale for those.

Oh dear, did I ever cause a kerfuffle. The other associate complained to management, who had to reprimand me for stealing a sale even though I didn’t take it myself. The associate was also reprimanded for the unethical sale. 

I didn’t make friends there. Apparently ethics doesn’t belong in retail sales, and I’ve always tried to live up to a strong code of ethics for the benefit of others. I could not in good conscious let that man pay for those shoes without feeling guilt, and to this day I do not regret my decision to downsell him those shoes. He came back to see me personally and thank me, as the shoes actually did help reduce his pain while in the garden. This was the kind of thing I worked for. 

I had the lowest amount per sale, however the highest total monthly sales for my department, because there were customers that refused to see other people due to my honesty. They simply wouldn’t deal with the other associates in my department, and would ask for me specifically. The managers had to deal with fires often from disagreements on fairness. No one could control who the customers wanted to buy from, however, and there was nothing that could be done about it. I was always on time, I didn’t steal sales from other associates, I found associates to pass customers to in other departments and I treated everyone fairly. I was isolated from the others, but it wasn’t a big deal to me. I was there to work, not to make friends, which wasn’t the same attitude that many others had. I didn’t mind.

When it came to my own products, however, I was no different than those other quiet handmade vendors. I’d converse, talk and answer questions, but didn’t want to come across as over zealous, so didn’t push sales. And I’ve never done so poorly selling products as I did my own.

That’s not to say I did poorly, mind you – but I didn’t have the same exuberance about it as I did selling other people’s products.

It was never for lack of confidence in my products – while sure, I’ve made a few mistakes and bumbles (seriously, what company doesn’t), I’ve always loved the things that I’ve made and have been proud of what I’ve  done. I think the issue lies more in the self, in asking people to pay me for the things I do. As much as I’d try to talk myself up that I’m worth what I ask for, I think deep down, I didn’t believe it myself and it came across that way. Or, not that I wasn’t worth it so much as just wanting to enjoy what I was doing without worrying about the monetary aspect behind it.

Which makes for TERRIBLE business practice.

I was quiet yesterday, and my husband noticed. My feelings were strong – and confused. I was elated by the outpour of support from so many people, while dreading taking their generosity, while grateful for it, while sad that those I thought would be more supportive disappeared, while humbled and embarassed, but proud of reaching out instead of falling into further trouble. I was also glad to have the thought of business off my mind, while sad to be letting it go.

Emotions are complicated and hard, man. But I’m ok. I’m more than ok. I am so, so blessed to have such amazing people in my life.

But gratitude and love win. Every time. And that’s how I’m feeling right now.

Plus exhausted beyond reasonable comparison. The last few weeks have taken alot out of me, and I don’t feel like I’ve given myself the proper chance to rest and catch up. And the more tired I am, the less I sleep, and the worse it gets. And today I’m definitely in a huge energy deficit, and I’m just staying in bed. I’ll take a break from that to do a small yoga practice and move some blood and tissue at least a little, but I don’t think I’ve got much else. And that’s ok. I don’t have anything I need to get done today, and nothing pending, and anything that’s on my to-do list can be put aside for another day.

This is where my boundaries and self care kick in. I’ve pushed myself here and there, mostly to see how my body would respond. It’s little experiments to know how far I can go and what activities I can do. Sadly, it’s not nearly what I’d have hoped for, but I’ll take what I can.

My MRI is on Saturday, which is faster than anyone expected. If the MRI comes back with issues, I’m being sent to a neurologist. If it comes back clean, then a rheumatologist. 

We’re narrowing things down, finally, and I’m looking forward to finding a better normal than I’ve had recently. It’ll still be awhile, but it’ll come. I have faith.

But in the meantime, I feel so grateful for everyone who has helped us, and I’m excited for the day that I can pay it forward again.

Hints and Clues

My energy is lower than ever. I wake up, and all I want to do is go back to bed. Sometimes I do – but when Dave leaves for work I make sure I’m up. It’s my personal sleep limit. I already know that I’d stay in bed all day if I don’t make the effort to get up. It now takes two full litres of fluid before my dizziness reduces to a point where I can walk in a mostly straight line. Until then, my blood pressure stays firmly under 90/60 and I feel like I have the coordination of a toddler. I have a constant inner burn throughout my abdomen, which turns into a pressurised heat in the lower right hip, often radiating through the joint and ass cheek and down to my right knee. From laying down, I have to sit up for a moment, and standing up is done very carefully. Moving too quickly, or looking around while walking, is extremely disorienting. Speaking is another adventure, where I’ll have a thing to say but I can’t seem to make the words I want to come out form properly, if at all. It’s frustrating, sometimes, trying to stammer something out while others try to help me with those words I’m struggling with. A great conversation suddenly turns into a distracting game of charades. I’ll be in a familiar place I know well, but not really know where I am. I stared at my underpants the other day for nearly 5 minutes trying to figure out which way was the front. And when I did, I still put them on the wrong way. (I just no longer do anything until I have my fluids. I’m really useless and dumb until I get that done….). And there are some places, especially in public with background noise, that I actually can’t hear what a person in front of me is saying. I seem to be having a struggle separating conversations, which never used to be a problem, and combined with the ringing in my ears I have a hard time really hearing what someone is trying to say – or I just hear wrong altogether.

A short while ago, what used to be “WHAT the ACTUAL hell am I doing?!” at all my little moments has become just a normal day. And we laugh about it. There are worse things to happen, right? That’s what I keep reminding myself. And so do others.

Which, if you really want to think about it, is actually quite invalidating. I know not to say that to others, because I know those twinges of frustration I feel when they say it to me. But I know they are coming from a place of kindness and concern, and just want to help. I understand that, sometimes, there are just no words that can help and those words which are offered are often awkward ways to say that they just don’t know what to say. I get that, and I’m grateful for them.

Sometimes, they may even feel I’m making it all up. And that’s really ok, too. What they think doesn’t really matter since they can’t really know what’s going on.

I don’t think about it further than letting that thought float away into a thankful smile.

10-Things-TO-SAY-Invisible-Illness-revised-400-72dpio-web

Last weekend I struggled with intense abdominal pain, and I kept saying to myself, “if it doesn’t get better tomorrow, I’m going to emerg.” Finally, when it got worse on Monday, I realized how dumb I was being by waiting and went in.

When there are already so many health issues going on, suffering through intense abdominal pain like I have in the past is not ideal. I’ve really learned to step outside of myself in order to properly make decisions like that. If someone were to come to me with the complaints I have now and ask me what they should do, I’d have suggested going straight to emerg. Well – that’s my answer, then. Why is it so hard for me to do that for myself without arguing?

Funny (not funny) enough, I know the answer to that.

I remember when I was a teenager, and I had what I now believe to be extreme eczema on my fingertips. It hurt so much, and trying to participate in any sports or even holding a pen was painful and would cause my fingers to bleed. I remember begging my dad to bring me to the doctor, because it wasn’t going away. We tried everything – lotions, antibacterial creams, antifungal ointments – anything over the counter. It wasn’t going away. He finally did, but he came into the appointment with me and insisted to the doctor that it was sandpaper I was using in shop class, and I was being a “putz” and not using gloves. He made sure the doctor knew that it wasn’t his idea to be “wasting the doctor’s time” but that he was only doing it so I would stop asking. I was so embarrassed. I remember it so clearly, and how much I hurt (both emotionally and physically), and how much I didn’t want to ever ask to see a doctor again, no matter what it was. The doctor gave me a steroid cream and my fingers cleared up after about a month, but I rarely asked for help because of situations just like that which were, in a way, worse than the complaint I had. Comments such as “suck it up” and “it’s not that bad” were common, and I started to simply ignore pain in general so that I would avoid seeming like a “wuss” to my old man. I wanted to live up to his expectations.

things-not-to-say

When I moved to Edmonton, I had a couple of different doctors that dismissed any complaints I’d mention during yearly physicals, so I didn’t bring them up again. Many of those complaints are now links to a much bigger issue. It makes me wonder if previous physicians had paid attention, if this could have been resolved faster?

But, there’s no point in continuing that thought. There’s no changing it now, just moving forward.

When a person’s complaints are dismissed by others – especially their health care team – it sometimes makes that person push through symptoms that shouldn’t be ignored because they’re not taken seriously enough, and they start to wonder if it’s all in their own head. I’m definitely guilty of that, but this time I can’t ignore it. Nor will I – this idea of minimizing the way a person feels is a nefarious social habit that I would love to never see again. When someone says, “Ow, that hurts” I’d love to never hear the words “Suck it up” again. So what if you have a worse pain that you don’t complain about – pain is subjective, and people feel different things in different ways. That won’t make the pain go away for anyone.

Just because one person is having less struggle than another person does not mean that person isn’t in pain, and the pain that person feels does not deserve to be minimized just because someone else thinks they have it worse.

Seriously, that shit needs to stop. Pain sucks, no matter how much, what kind or who is experiencing it, and no one “deserves” to be in any kind of pain, no matter how stupid the action they take that causes it.

Anyways. Moving on.

While there are definitely some GI issues going on, they also found a cyst or mass on my ovary, as well. I wasn’t entirely surprised, really – I’ve been feeling a lump near my hip anyways, but I guess I had just thought or hoped it was something else. I was diagnosed with minor endometriosis in 2009, my mother had extreme endometriosis before her hysterectomy, there’s a history of ovarian cysts in my family – I guess it’s to be expected that I’d have some troubles with my internal lady bits.

There’s absolutely a reason (or, maybe, many reasons) that my body is rebelling against me. I have ideas and thoughts and suspicions, but there’s no way to know for sure, really, until we get closer to finding out what’s going on. I’m not just sitting idly waiting for a cure to come. I’ve been reading studies and books and publications, and finding out different angles that might be helpful in reducing symptoms. I’ve reduced my eating habits to bare basics to try to find a correlation between the reactions of different foods (and I’m starting to see some patterns, but nothing definitive yet since I am still struggling with my sugar intake… it’s my bane. And the husband doesn’t help with his cookies and danishes he brings home regularly. Curse you, tasty cookies…..)

It’s a lot of experimenting, a lot of patience and a lot of standing my ground in those occasional moments I do feel dismissed. Fortunately, there have been limited dismissals. I feel my family doctor may have not taken me seriously, at first, but he is now after an hour long appointment one day where he realized how far back many of the symptoms go. He has been my attending physician for only a year or so, so we’re playing some catch up. The only other time was the neurologist I saw in ER for a brain CT who tried to tell me I was “more depressed”. I suspect psychology is a little far from the field he specializes in, and I understand that it’s hard to really know how a person is feeling. I understand how he came to that conclusion, but it did not make it less frustrating at the time. Depression is something I feel confident saying I have not experienced for a number of years. It’s in my medical history, to be sure, but is not currently a part of my life.  I didn’t argue, however, since I wasn’t there to see him specifically – I was there on my own doctor’s order in order to get a CT scan faster than they could schedule one for.

Some people may think this is backwards progress, or that news isn’t good or that things aren’t happening.

Some people would (and do) look at the situation I’m in as frustrating and hopeless.

But I’m not that kind of some people. I’m that kind of somebody that sees every hint and clue as a direction to take, or a crumb to follow. So many things have been ruled out – and we have an actual direction to work towards, now. I see an internist soon, I am having an abdominal CT soon, and we’ll move on from there to see what comes.

Being a doctor isn’t easy, and diagnosing even less so. Many of the people I’ve spoken with believe there’s an easy test for everything and it shouldn’t take so long to find out what’s wrong – but the reality is that science hasn’t caught up to those needs. We don’t have the funky body scans like they do in Star Trek, yet. The best way to diagnose something is first to diagnose what that thing IS NOT. This takes time, patience, and sometimes allowing things to get worse in order to find those breadcrumbs to follow to figure out where to start fixing the problem. I understand the frustration of doctors running circles around that thing you know is going on – because sometimes they don’t want you to be right. They don’t want to admit that you know more than they do. But you DO know more. You’ve lived with your body. You know it better than they ever will in the way that you know how it feels, and you know when something is not right. You don’t need to know anatomy and physiology in order to tell someone that something isn’t right (although it certainly helps in order to express how you feel, or to understand why there’s an issue, and possibly how to fix that). Physicians are supposed to help you. Doctors are people too, however, and ego often gets in the way of progress.  There are good ones out there. They exist. They’re not all equal, and sometimes you have to find one that fits. Don’t sell yourself short, and don’t minimize what you’re feeling.

 

Take care of YOU.79fec95aff23e22ca6379a6ad4bc602a

 

Blessed be.