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.

Advertisements

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.

One tiny step forward, maybe?

Finally, a routine is starting to come together. It’s not a strict regimen by any means, but it seems to be working. I feel like I’m getting things done that have been sorely neglected. Studying and reading is so much harder than ever, because the words feel like they’re just floating loosely in my head instead of finding something to grab onto to stay there. But it’s happening, a little at a time. I’m mostly sticking with the food restrictions I’ve implemented (mostly – cookies may get in the way occasionally), as well as staying in and listening very closely to my body. If I need to stop, I stop. If I feel like I can get something done, I do it. If something is causing symptoms, I avoid it. I’m trying to avoid napping during the day, but I’m letting myself go to bed when I need to, and wake up when I wake up.  There’s definitely an increase in the amount I’ve been sleeping, but I’m also having better sleep.

Everyday is something new and different, and I think I’m starting to see the trends. Excess sugar seems to make my head go numb and the ringing in my ears gets worse. Possibly yogurt, but that might be the sugar content. Meat seems to generally slow my digestion way down, and if feels like there’s a rock in my system. Chicken doesn’t have nearly the same effect, though. I don’t feel functional until I finish my first bottle of water with mineral supplement, where the brain fog and dizziness seem to get a bit better. If it’s just water the dizziness and brain fog are still extra thick. Some scents cause more dizziness and flushing, especially the Cascade dishwasher samples I got in the mail, and the Hask shampoo I haven’t used in a awhile seemed to trigger it a bit, as well. The sun still causes more dizziness and blacking out almost immediately. So on, so forth. There’s definitely a lot of investigating underway!

I do believe, however, that overall, there’s a tiny, small improvement. I feel a little more functional, and like my head isn’t quite as thick. My stomach isn’t in debilitating pain anymore, as much as “just” constant general heat and discomfort. My energy is about the same, but I’m learning to manage it more efficiently by making lists and creating reminders. My blood pressure seems to be rising back towards the low 90’s more often, instead of low 80’s (I can’t even describe how much salt I eat in a day, plus 5+ litres of different liquids…). I’m working on things around the house, reading books I’ve put off for too long, watching movies, making slow progress on my  clinical aromatherapy and generally learning to function. The people around me are helping me to cope and help fill in the blanks when I lose my words. I’m not out often, but when I do it’s extremely taxing. Keeping the occasional outing short and easy gets me out of the house as much as I need to right now. The sun seems to be the biggest trigger, and even being in the shade outside seems to trigger symptoms. Sadly, I’m missing my favorite part of the year, and missing being outside and foraging for herbs and medicinals to restock my stores. That’s what mail orders are good for, though, even though I love using wildcrafted so much more. Summer will be back next year, and who knows – maybe I can finally have an appreciation for winter that I’ve never been able to have before. Maybe it’s just time for that change.

It’s still too soon to say if these are real improvements, or if I’m just reaching for straws. But I’ll take it anyways.

Healthy habits are starting to come back, with most of my daily self care routine. I’m almost ready to start a light yoga practice again, and some light martial arts basics. I think the mantras are some of the most valuable lessons I took away from my teacher training in this little adventure. If I’m feeling the slightest unsure, unstable or miserable, that is how I’ve found my calm and ground again, and always end up smiling by the time I’m done. I’m sure my neighbours know how they go by now. I’m hoping that even a small regular practice will be enough to keep my body from deteriorating more. I’ve lost quite a bit of muscle mass already from inactivity, which I’m sure hasn’t helped everything, but that can be fixed again. I’ve tried going for short walks, but I find the dizziness and facial flushing to get worse every time. I really don’t know what to think about that. I keep it minimal.

I’m just going to keep up with the new changes, and keep journaling everything until I see the internist I’m being referred to, and hope that appointment comes soon. There’s a lot of conflict on the various treatments for the things that might be going on, and I don’t want to make anything worse by thinking it’s one thing that it’s maybe not. Hello Lupus, good day Mastocytosis, how do you do Lyme – whatever you are, I will find the way to evict your unwelcome presence from my life. Or, at least, set up a barrier to keep you from taking over. Without having a direction, though, it’s hard to know what to do. So, I’m going to do what I do best – and just keep doing! With a smile, to boot.

If I’m gonna feel drunk all of the time, I may as well be a happy drunk instead of a miserable one!

(Did I mention that I started experimenting with my marijuana prescription yesterday? It’s certainly upped the level of interesting in this whole thing. I think yesterday was one of my most productive days! There’s certainly a learning curve going on over here, and I really couldn’t tell you which way it goes…. but as long as there’s something to learn, there’s something to work towards.)

 

Hari Om.