Not OK today.

I got up this morning to use the little girl’s room. Nearly fell over. No reason – just lost my balance. This is “normal” for me, these days. Took my meds. Grabbed a hard boiled egg from the kitchen and poured the salt on it. Filled up my water bottle and dropped the fizzy tablet of electrolytes into it. Warmed up my heat packs and went back to lay down with everything in tow. This is my morning, every morning. A heat pack for my belly to help get my guts active, another for my eyes to fight the chalazion on my eyelid (it’s unrelated to everything else going on. Just one more thing to deal with.) The meds to keep my pain levels in check and to reduce heartburn. The egg to get a protein boost to help fight off the brain fog a little. The and electrolytes to help retain body fluid, which helps reduce the dizzy spells a little. They all have to be finished before I get up again. If I don’t finish these things, I notice it.

Breathe in.

Breathe out.

I’m not feeling strong today. But it’s the same as yesterday, and it’ll be the same tomorrow. This is my thought. Normally, I go through the motions with no problems. Not today. I’m especially frustrated today, and I muffle a sob from under my eye pillow so I don’t wake up my husband and cry quietly to myself. It feels good to release.

He worries about me. I know he does. I feel so bad asking him to stop certain things he’s always done. He does this strange head bobbing dance which is just goofy, especially when he needs a haircut and his hair bounces all over the place – but he sometimes gets in my face with it, like he did last night (or, was that the night before? I’m honestly not even sure) and it’s overwhelming in so many ways. Too much motion, my eyes can’t focus, which causes them to hurt, which causes me to flare, which causes my body to heat up, and my face tingles, my head hurts, I get light headed and dizzy and he hasn’t stopped because he thinks I’m playing around but he gets it quick when I snap at him to stop while my vision gets darker and my legs get weak.

Instant regret. He was playing and having fun, and I was the fun-killer. The look on his face is mixed with the sting of getting snapped at and concern.

That happens alot, lately. Or it seems to. He says I’ve been really good about it. But I can’t help but feel horrible to have to resort to snapping in order for the over-stimulating things to come to a stop, because I’m just not able to make the words come out gently. I just need things to stop, sometimes, so that I can find my balance, brain, and and sight again. It’s not that I’m angry or annoyed at the actions themselves – I just can’t tolerate them for some reason. One thing gets set off and creates a domino effect in my body, and I have absolutely no control over it.

Breathe in. Promise to do better next time. 

Breathe out. Let it go. No point dwelling on it.

Wipe my tears. Find some pants. Brush my teeth. Take the dog out. Brush her fur – my arms are tired really quickly, and it’s a short brush out. I’ve vowed to do at least a bit of grooming every day to try to cut down on the hairballs in the house. She finds her toy and wants to play, so we do! By the fourth or fifth toss, though, my arms feel like they’re going to rip off with each throw. It’s a good thing she’s old and tires out quick, too.

Come inside, wipe here paws, perform her pre-meal games with her, grab a yogurt, fill my water bottle again and go sit down with my feet up to build up some more energy again.

This recharge will give me the most energy I’ll have in the day. After two bottles of water and a couple of small protein snacks, I am normally ready to get some things done. Some days are easier than others… but today isn’t one of them.

I wander in a few circles in the kitchen, trying to remember what I went in there for. Dave asks if I’d want some pancakes if he made them. Yeah, that sounds great. Thanks, baby. Hey, what did I come in here for? He looks at what’s in my hand. Heat bag? Oh, right. I need to do my eye mask again. Thanks, baby. He asks if I’ve been getting my steps in every day. Yes, except for yesterday. I’m not always getting outside for my walk, but I’m getting my steps with cleaning and housework and general pacing when I can’t remember what I’m doing. He suggests going to By the Lake Park after pancakes. I know it’ll be exhausting, but it sounds lovely. I miss being outside.

I heat it up and go sit on the couch again, the weight of the eye bag spreading a comforting warmth through my eye sockets. I sigh. I remember to check my pelvic floor – yep. Tense. As always. I relax my legs. Relax my pelvis, my abdomen, my arms. Relax my face. Let myself sink into the couch, remembering one of the mantras I learned in yoga teacher training. But my mind drifts badly today, and I can’t keep focused on the mantra.

I want to do things. I want to read these books I have piled up (but reading seriously hurts, and takes away from the story I’m trying to read.) I want to walk around By the Lake Park (but I’m SO bloody tired, even though I just woke up, and even two blocks is exhausting and my legs feel heavy by the end.) I want to watch my husband do dumb, harmless, fun shit (but it’s entirely overwhelming for my senses, sometimes.) I want to go on vacation (but we’re broke from meds that aren’t covered by benefits, eye tests, appointments that can’t be direct billed or aren’t covered, hotel stays for Dave while I’m in procedures, the new hot water tank we had to install…. it all adds up.) I want to be healthy (but, well, I don’t seem to have any control of that no matter what I do.) I want a treatment plan (but there are still tests to be done to rule out diagnoses and the treatments may not work without knowing what it is we’re treating.) I want to scream (but my head hurts.) I want to visit people (but even the ride out to them is exhausting, and I’m done before I even get there.) I want to be happy (but, sometimes, I’m just not, and I can’t help that, but it drives me crazy anyways.)

Dave comes and sits next to me and holds my hand.

“Hi baby! What’s up?” I ask. He doesn’t need to know how bummed I feel today.

“Nothin’. I just wanted to cheer you up.”

Damn. He knows. I sob again. “Why’s that?” I say with the best grin I can manage, which I’m sure is more like a grimace, my voice cracking, my eyes tearing up. “I’m just fine.” Heh. I’d like to nominate this Grammy award to…. anyone except me. I’m not good at acting through my personal Swamp of Sadness, even with the heat mask hiding my wet eyes.

He knows and feels my frustration. We do everything together. We used to wrestle all the time. I’d get hurt everytime. Usually because of something dumb I’d do. It was fun. But we can’t do that anymore. He can’t dance silly around me anymore. We can’t listen to loud music anymore, have bright lights, do many activities we used to do. He’s picked up alot of the tasks that I used to do, because I haven’t been able to keep up. We don’t go out to eat nearly as much, because I have to be so, so careful with what I eat. We don’t eat together at all anymore either, because I have to graze. I can’t handle meals anymore, and I can’t handle most of the things he eats at all. I’m in bed by 8 or 9 most days feeling ready to crash, even though I struggle to actually fall asleep until 11 or 12.

Everything is different, and neither of us really like it.

Neither of us is at all upset at the other for it. It’s something we can’t control. But that doesn’t help. I still feel guilty. I feel insecure. I feel inadequate. I’m not able to keep up my end of things. I’m watching TV while he’s at work. I mess up the budget. I waste ingredients making bread that doesn’t turn out because of something I missed. I forget to do things while I’m on the way to do them. I tell him I’m going to do something and then forget. I forget to finish tasks because I forget what I’m doing while in the middle of it. I’m so tired by the time he’s on his way home, and it takes everything in me to create a passable meal for him for when he gets home. He doesn’t except me to do it, but I want to. And all of the old insecurities about working (or, rather, not working) and not getting along with people come rushing up at me again, and I suddenly wonder if I had just agreed to wash the staff dishes at the PCN maybe they would have liked me better and if I’d still be working there.

What. The. Actual. Fuck. Where did THAT come from? The people that hired me there seven or eight years ago were narcissists and played a gross little mind game with me, in hopes that I’d quit, because my supervisor admitted that she told me too much and she didn’t want me to accidentally let anything slip. That, and they wanted to hire part time help in order to save the cost of providing benefits, and I wasn’t impressed with what they were proposing. They asked, and I gave them an honest, fair answer.

I was devastated when they fired me from that job for no real reason, and the reasons they did fire me for were unjustified and undocumented. Not to mention outright lies. It was a huge blow to me at the time. So why was this coming up now? Why do I care about something that happened so long ago?

Insecurities and anxiety are the assholes that work together to bring you lower than your current low. If I’m going to be down, and no one else is around to kick me, I need to do it myself. Old habits that you think are hard to kill sometimes don’t actually die at all and just go into remission now and again. So is the case here. Old stuff that has no place in my life anymore. Especially now.

Dave kisses me on the forehead and goes back to pancakes. I love when he does that. Some say lavender can cure all things, but clearly, they’ve never had forehead kisses. They are the concentrated version of anti-depressants in quick-release form.

I destroy my pancake with peanut butter. Did you know that “natural non-separating” peanut butter only doesn’t separate because it needs to be refrigerated? Keeping it cool also keeps the oils from going rancid, of course, but that’s the trick to making it “non separating”. Which means that it’s stiff when it’s cold. Which also makes it “unspreadable”. We got a giggle of my mashed pancakes, but they were tasty nonetheless.

It’s chilly out today, but nice enough for a walk. I bundle up – I know I get cold easily. Always have. I figured I’d have little problem at -2C, but I feel the bite of the tiny breeze and wish I would have worn a scarf. Oh well. I draw my hoodie around my face more, and be grateful to be outside. The breeze bites a little, but it’s fresh and relieving. We chatted about those kinds of things we chat about – a new puppy which is guaranteed to enter our lives at some point, our old dog we can’t take out in public, the graffiti on the gondola half way around the path, the new updates to the park since I’ve been to it (which has been awhile), what I can see clearly (and not – like the deer he tried to convince me were in the distance. I saw slow moving snowballs.) I tried to explain what I saw… and got frustrated again, because I don’t know how to explain how my vision is wrong. It just is. The colors are wrong. The depth is wrong. The hues are wrong. The outlines are wrong. Everything just looks wrong, and I don’t know how to explain it.

I felt more alert than I have for a long time, but my legs grew quickly numb and my feet started to drag. My legs were so heavy by the time we got around the circuit. It’s not a long walk. But – I got around it. Personal victory! We had a couple of stops to make on the way home to hot chocolate and my fuzzy blanket. 

And now I’m exhausted. I want to go to bed. I struggle getting to sleep at night, however, and I worry that having a nap will result in poor sleep overnight. Not that it much matters, mind you – I’m exhausted no matter what, anyways. With limited energy, though, I also don’t truly want to nap and miss out on more the day than I already miss out on. There are things I want to do. A cat to snuggle. Crafts to make. Plants to care for. It’s not even that anything HAS TO get done – they are things I enjoy doing, and I just want to do them. And it’s frustrating that I can only do a sliver of a fraction of what I used to do, and have no idea how to get that life back.

Or if I can.

And this is the way that thoughts spiral out of control, and this is what leads to despair and depression. And that’s a dark, scary place that I don’t want to be in again. That hole keeps getting bigger, and darker, and deeper, and the edge keeps coming closer faster than I can run away from it. Today I’m on the edge. Tomorrow, hopefully, I can get ahead of it again.

But not so much today. Today is a bad day. Today is dark, forlorn, lonely and resentful. It’s easy for someone to say “Hey, Krys, snap out of it! You’ll be fine!”

But I’m not fine. Not today.

One of the things I’ve really started to do this year and last is focusing on “now”. Living in the moment, in the present, instead of dwelling on the past or focusing too much into the future. And I’m tired of the moment. Right now, things suck. Right now, I feel like shit. Right now, I would be willing to do almost anything to get a restful night’s sleep, or to have my mind back, or to be able to have normal vision again, or to have a relieving shit without having to coax it out even with stool softeners and “detox” teas. I don’t like the current moment. Not in this body, anyways. And this adds to my frustration, because I feel so ungrateful for everything around me, because I want more and feel like I’m not happy with what I have. The rest of my life outside of my body is amazing. I want to enjoy it. I’m enjoying it most days in the ways I’m able…. but today, I’m struggling with that enjoyment. Today, I want to yell at whoever is responsible…. 

But really, that person is ultimately me. If I had taken care of myself better before, maybe things would be different.

But I didn’t. And they’re not. And yelling at myself won’t do any good.

So today is a down day. And tomorrow I’ll be ok again, until the next day that I’m not.

This isn’t the kind of day I share often. And probably won’t much. But they happen. And if you happen along my blog because you find yourself in a similar situation or place, know that it’s ok. You’re not alone. And you’ve got this. It’s ok to be on edge, it’s ok to be sad, or angry, or resentful. It’s ok to need to step back or do what you need to to stay sane. Keep yourself together in whatever way you’re able.

For me, those things that ground me most are chilly walks outside, hot cocoa and forehead kisses.


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Little changes can be bigger than they seem

My days are plugging by, with me plodding along an old, worn path I’ve never been down and I’m taking in the scenery as I go. I have no idea where I’m going. I’m just going, and wherever I end up…. there I’ll be.

It’s really not such a bad thing, most days.

Other days, I’m struggling. I get frustrated, sometimes, especially when the brain fog is thick and my eyes are tired. Have I mention I wake up exhausted? Sleep doesn’t help, and getting through simple tasks takes all of the energy I don’t have. I’ve been a person with goals for so long, even if they weren’t incredibly clear, I had them. They were fluid, often transparent, occasionally tangible, and seldom met to completion. And it worked for me. At least, I thought it did.

Changing that way of being out of necessity has it’s ups and downs, and there are no words that can really portray what it’s like. Most days, I’m content to just do my thing, which is maintaining the house, writing, crafting a little and taking care of the plants of animals. Very simple, very easy, but still exhausting. Other days, I’m frustrated, mournful of the life I had and want back, and resentful that the more I tried and still try to be healthy, the more my health deteriorates and there seems to be no way to win.

(Don’t worry. Those phases pass. But they happen, and it’s ok that they do. I’m human. I’m expected to have bad days, too, and I have to allow for that.)

Life is life. It’s not a game. There is no winning or losing – there’s living. And either you’re living or you’re not.

And oh, the things people say without really knowing how much they hurt. I’ve been learning this lesson, and learning to control my knee-jerk reaction.

“Keep your chin up! At least you don’t have cancer, right? At least you’re still walking. At least you are functioning. Don’t worry. Everything’s going to be alright. I’ll buy you a drink when you’re better. Oh, you look so healthy! You look so great! Are you sure you’re not too focused on your symptoms? Have you tried supplements/vitamins/magic smoothies/dart frog poison/essential oils/acupuncture/stabbing yourself in the eye with a fork?”

The list grows. There’s always some new miracle cure, some amazing diet, some medication or happy thought that will make everything better.

It’s hard to cure something when you don’t know what it is, nevermind if it’s curable or not.

And the thing is, as frustrated as I get, I have to remember that not oh-so-long ago, I didn’t understand either. I didn’t understand the crippling exhaustion, or the heavy brain fog, or the heavy weight of the limbs, or the affects of gastrointestinal distress. I didn’t understand that sometimes eating healthy isn’t as easy as it seems. I didn’t understand the fear, the insecurity, the disbelief from others. And I definitely didn’t understand how unhelpful I was being while trying to be helpful. I really wanted to help. I really thought I could. And this experience has taught me that, sometimes, it’s just not as easy as it seems.

It’s a good lesson to learn. One that I’d like to graduate from and move on, now. The lesson is imprinted deeply. It’s a humbling experience, to be sure. I honestly felt like I was healthy and would live a long time that way, and I really thought I could help others feel better, too. 

But that certainly changed. I have no idea how long I’ll live. Maybe a long time. Maybe a week. That’s the thing, though – we have no control or insight over that, do we?

I wanted to help people feel the same I did, because I felt SO GOOD. I was on the healthy bandwagon, because I really believed it was the thing to do. And lately, it’s been really hard to know what to do, what to believe and how to move forward. If I can’t help myself, how can I possibly help others? This has been a huge blow to my own confidence, and I find myself questioning everything I’ve learned and everything I thought I knew.

And where I stand is where I am. I’ve let go of so much. I’ve let go of the things I thought I knew. The things I still know. The things I didn’t know. The things I have yet to know. I’ll know what I know as I get to know them. But sometimes, things change, and so does the knowing that comes with those changes. 

Letting go is hard to do. But it’s getting easier, and the more I let go the easier it is to move forward into the big, scary unknown.

Multiple Sclerosis. Lyme Disease. Lupus. Postural Orthostatic Tachycardia syndrome. Neuralgia. Mast Cell Disorder. Myasthenia gravis. Fibromyalgia.

We don’t know what’s up. The big ones on the table right now are MS and Lupus. It’s a waiting game that I’m just trying to survive with the best quality of life I’m able to have… which involves warm blankets, heating pads, furbabies, hugs, forehead kisses, hot chocolate, and a whole lot of forgiveness for myself. This might not be enough for many people who want to know answers right now – but it has to be good enough, because it’s all I’ve got at the moment. So I’ll take my comfort where I can, and be grateful.

Hari om.

Little Things

Sometimes having the most simple thing can make everything seem just that little bit better.

Right now, that thing is fresh ginger and tumeric tea. Nothing fancy. Just that tiny bite of the tongue from ginger and the rooty, grounding flavor of both of them, with a hint of honey. It’s simple, tasty and warm.

I have 2 journal entries I’m trying to write, and it’s getting harder to do that. Writing itself isn’t so bad – I can type with my eyes closed. But the words are getting harder to find, and proofreading is harder to do, and making things coherent isn’t as easy as it used to be.

I’ve always been wordy, but lately… my words are faltering.

And I’m struggling with it. My left eye has gone completely blurry, and it’s become hard to focus on anything for any amount of time.

But I’m finding ways to makes things work. Minimizing the work that needs to be done, asking for help when I need to, paying attention, being as patient as I can…

Today I expanded my yoga practice. I had been performing very limited poses now and again, but today I did a full 20 minute practice, without standing poses. And you know what I found out?

My body isn’t my own. Well, it is, but it sure doesn’t feel like it.

My joints feel similar to before I started to lose weight. I can’t kneel again, my hips have stiffened up, my neck and shoulders are angry rock corrals. I’ve been slouching for so long to accommodate for the cyst at first, and then after surgery to keep off the painful perineum sutures, that my hips and tailbone feel like they were sun baked and dried out. My muscles have deteriorated and I’m not able to hold poses for any amount of time without shaking.

And you know…. it’s ok. I’m grateful for my body, even as broken as it is. It’s only treating me as well as I’ve treated it for way too long, so the patience is needed. It’s time to be gentle, kind and nourishing.

I’ll get my book written.

Eventually.

Finally, a goal I can work towards.

Hello, internet. It’s been awhile.

My surgery has come and gone. I am feeling tremendously better without a uterus, ovary and angry dermoid cyst. And changes are underway. I was told there were no complications, only to find out two days later that my perineum tore, and not just a little. I’d say this is a complication worth mentioning….

My direction has changed again, and is one that I know I can work towards but allow myself the breaks I need when I need them most. And it starts here.

The more I talk about my story, the more people I find out also have endometriosis. There are 1 in 10 women that have endometriosis – and those are only the ones that are known. Many people will go through life with their endo and not suffer any symptoms. Others suffer all of them. Each case is unique.

Most of the time, nothing is done about it because women have been told that it’s just their life now.

“Yup. You’re a woman. Pain is now your game. Deal. Haha pain meds? No. You don’t need those. You’re fine. Your pain isn’t THAT bad.”

It’s not ok. More awareness is starting to come up, and more endowarriors are speaking out.

Living in pain is NOT NORMAL. There are options. If your doctor won’t do anything, your CAN ask for another opinion or a referral to a specialist. If they refuse, file a complaint! Unless they have a good reason to deny your request, it is against their code of ethics to deny a requested referral.

Please, don’t let them bully or gaslight you, or convince you that it’s all in your head. YOU know your body, and when you KNOW something isn’t right, speak up. And make sure they listen. It’s not always easy, but stand your ground. Don’t minimize your symptoms or pain. If it hurts, tell them. And keep telling them.

You are responsible for you, and if you won’t stand up for yourself, the fight will only get harder. More women are speaking out with their stories. Is it time for you to reassess your own?

There is so much conflicting information on endometriosis, the etymology of it and the treatment for it. Research it for yourself, because you might be amazed what old school information many physicians and gynecologists live by. I specifically asked my gyne to NOT treat any endo I might have outside of my reproductive organs, because I disagreed with his treatment methods. I was respectful in my request, and he was respectful of my wishes when I showed him my resources.

The best source of information I have come across is Nancy’s Nook Endometriosis Education. Please remember to answer the questions to join the group. It is not a typical discussion forum, but a place to find solid, scientifically backed information on endometriosis and related disorders. It is a research platform to help you advocate for your own health, and it has been invaluable to me.

I left my gynecologist’s surgery table in 2009 believing that he had resolved my endometriosis with the tubal ligation. When he dismissed my severe abdominal pain a few years later, he did me a great disservice, and I’ve been suffering with worsening debilitating pain ever since then, believing that it was normal because I could not get anyone to believe me. So I stopped complaining.

That was not fair for me, and it’s not fair for anyone else. Your doctor doesn’t know what you’re feeling, and if they won’t listen – it’s time for one that will.

Stand up for yourself. Please. No one should ever wake up from surgery feeling immediately better than when they went into it. I did, despite the weakness, shakiness, horrible nausea and groin pain (if you want a REAL picture of what happens and have the stomach and constitution to watch it, look up vaginal hysterectomy with episiotomy on youtube.)

Despite the pain of surgery, I was also acutely aware of the relief from the pain in my right side that’s been there for longer than I could honestly say. I thought it was my hip. Ends up, it was more complicated than that.

I never thought I’d be grateful for organ removal. I have my current complaints from surgery recovery, but it’ll get better. It’s already better than it was before.

Don’t let this story continue for longer than it has to. Be aware of the disease, and the options available.

Sending love.

 

Special shoutout to “Endo and Us” for the beautiful video that shines a light on what endometriosis is, and what it’s like to live with.

Another Experience for Campfire Stories

If menstruation gives you the jeeblies, this is your single warning that this post may be TMI for you. There may be details.

pain-scale-chart

Everytime I’m told to rate my pain on a scale of 1-10 I’m torn. I’m told to rate pain with “10 being your worst”. I was curious about this, so I’ve asked around to other people to see what their “10” rated at.

My husband’s was a bad bruise. Which, fair, can definitely hurt! I’ve had some nasty ones. Many others said stubbing their toes, charlie horses, breaking a bone. A few said labour pains.

It’s not a game of “who has it worse” – it’s trying to figure out what’s normal. So when I feel a bad pain, should I rate it according to my worst?

The worst of my worst have been two experiences, until recently. The first was an infected tooth. There was a cavity that opened up to the nerve, and I could feel every breath, bite, drink and temperature change like a hot needle searing my eye. The pain radiated throughout my jaw, into my ears and eyes. The percocet and demerol I was given until I could get into an appointment didn’t touch the pain – but it made me not care about it. If that wasn’t bad enough, the infection meant that the local anaesthetic didn’t work, so I could feel the drill. It was agony, but there were limited options. I survived.

The next was after I broke my leg, but before the repair surgery. The break itself put my body into shock before I could feel the pain. However, after I had my senses about me again I tried to move, and that tiny action sent ripples of heat everywhere and turned my vision white. The bone had shattered, and the pain from those shards rubbing was as bad as the infected tooth. So every time my knee even shifted was a full-body solar eruption. The morphine made me loopy – but it did nothing to relieve the pain. Just take my focus off of it.

Some people’s 10s would be more of a 4 for me, or maybe a 6 at most. So I’ve learned to ignore my 10s when given this scale of reference. My 10s I’ll rate as 20 so that when I go in and they ask, they know it’s not a small deal anymore. Otherwise, my 6 isn’t viewed nearly as bad of a pain as most people would experience.

Funny, how scales change with different experiences.

People think it’s odd when I don’t know my pain, but how could I possibly know what’s “normal” compared to anyone else? I remember when I went in to see my doctor about bad period pain, and I was told it was normal and to take Midol. I never did, because it didn’t help. So I just lived with it since about 2004, because I figured that’s what all women experienced. It has sucked, and I’ve always wondered how more people didn’t complain more about it, yet they’d complain about such other little pains. I never quite understood that.

The internet has really evolved into a thing where you can find out more and more, and it really wasn’t until this year that I found out that the pain I experience every day is NOT normal, nor is my menstruation. Apparently it’s not normal to have to change a heavy night time pad or tampon every 30 minutes or risk spilling over. Who knew?

I didn’t – because those who I did ask all told me it was normal, so I stopped asking, and didn’t really think more of it until this year. I will always remember my first gyne literally rolling his eyes at me when I mentioned I have a high pain tolerance. It makes me wonder what he has felt that’s comparable.

I have asked a few people what labour pains feel like, since it’s not something I’ve experienced. I’ve been told it’s about 5x worse than menstrual pains, but I was actually trying to figure out what “normal” menstruation pains feel like by asking.

Image result for uterus cartoonWhooo boy, when I finally found out I was actually mad. The mild, annoying but ignorable cramp and pull in the gut that was described to me isn’t at all what I feel. What I feel is more burning and tearing, like someone is slicing my uterus with razor blades, which makes me stop what I’m doing in order for me to catch my breath until that wave passes over. I also feel like I have an infected appendix, every single time. I’ve nearly gone in so many times because I was worried my appendix was going to burst, but it would last for a day and then fade again. Oh, and that’s just PMSing (not to mention the hormonal fluxes at this time, as well). It doesn’t stop during menses, so ontop of the ripping and burning, there’s more of an internal scrape which causes a constant trickle and clumpy discharge onto oversized pads, which leaves me exhausted and adequately spent by the end of my moon cycle which takes nearly a week to recover from. But apparently this was normal, so I’ve been putting up with it for what I now know is far too long.

This has been slowly getting worse over the years, and this year it’s the worst it’s ever been. I’ve been dreading every month, knowing what’s coming, and it’s had me curled up on the couch hopped up on pain meds and heat packs that barely help. “Exercise” people say… not realizing that exercise has actually made it so much worse. “Push through it” they say, not realizing that it feels like I’m going to internally combust. It’s an easy thing to say when you see someone up and walking around, but we can’t always know what’s going on inside.

I didn’t. Finding Hurty Gerty the ovarian cyst in July explained so much.

A couple of weeks ago I was in Edmonton for appointments, and when I was done I did my normal routine of hitting up Southgate for a book for me, chocolate for my hunny that houses me during my city visits, and LEGO for the husband. It’s become a fun routine. There was alot more wandering around than my normal day to day, and by the time I got to N’s I was hurting pretty badly. First thing I did was unzip my jeans (we’ve known each other for a LONG time – pants are not necessary around each other). I massaged Gerty, and BOOM – she moved from sticking out of my hip in a fast action-packed acrobatic salutation into a solar-radiant heat charged ball of electromagnetic energy that pulled all the forks in existence into my abdomen. It lasted about 10 seconds of excruciating kill-me-now agony, and then subsided into  a low burning pull as long as I stretched out on the couch. And didn’t move. At all.

The next day it didn’t change, so I decided to head to emerg and get it checked. It was definitely not comfortable. Before I went in, however, I received my phone call that I’d been given a surgery date of October 11th. I was ecstatic! That’s so much better than having to wait for 8 months. But…. there was this thing happening in me that I needed to take care of.

The waiting room chairs are not comfortable, and without being able to stretch out, the pain got worse. And worse. And eventually it turned into pretty much the same feeling as my tooth pain, except radiating from my groin. Every breath hurt. Every movement. And I would have been happy to die right there in order to get away from it. Eventually they got me a bed and morphine, right before I laid my bad on the floor and used it as a pillow, and I ended up staying for a night of morphine and waiting.

Everyone was so good to me, and nice. I think I was in shock when I first got in, as I was freezing and couldn’t stop shaking. It was cold, but not so cold I should have been shaking that hard.

After a long night, more tests and alot of morphine, they discharged me with pain management until my surgery date. I was devastated. This thing needs to come out. I was mad, too…..

But…. I get it. Emergency surgery is for life or death situations. I wasn’t dying. I COULD have been, since my ovary twisted, but not enough to completely block off all blood flow to it. It sucked, and it still does – but I’m far from dying. The ultrasound showed that my dermoid cyst great from 4.7cm to 5.cm – a 3 mm change from July. This may not seem like alot to worry about, however dermoid cysts are typically known to only grow 1.8mm per YEAR – we have some concerns, for sure. Ones that can wait. We’ll find out soon enough, I’m sure.

So I’m now home, resting as much as possible to avoid full ovarian torsion again and high on drugs, more drugs, ontop of even more drugs. For someone who tries to avoid drugs so much, I certainly am not succeeding. But desperation wears a person down, and that is what I am.

I was initially scheduled for a right oophorectomy and endometrial ablation, but after reading up on it, I quickly decided that the ablation was definitely not for me. I expected to have a harder time convincing my gynecologist to give me a full hysterectomy, but after explaining my reasoning he actually quickly agreed. I couldn’t have been more relieved. So in two weeks, hopefully I’ll be waking up a few organs lighter, and never having to dread my monthly shark week ever again. We’re hoping that the POTS and MCAS symptoms will also be alleviated, but chances are that will still be a thing we’ll have to deal with later. It’s a nice thought, at least, but at least there won’t be interference from hormonal imbalances, and it’s possible that my endometriosis is dealt with at the same time if it’s isolated to my uterus. I can hope.

Spirits are high that the end of this part, at the very least, is nearly over.

Labs, tests, results, and hope

Just like the title says, more things all happened. More blood was taken. More strange looks at my spacey gaze and glazed eyes. Questions about why I was having certain tests done at such a young age. Comments on how good I look so I must feel at least ok. And then more normal lab results.

Ambulatory blood pressure monitoring is a medieval torture method used on those individuals who are bewitched and have no outward signs of illness, in order to exorcise the devil out of them. The cuff inflates so much it cuts off all circulation to the hand and turns the hand a sickly blackish purple color, making the veins bulge like a stressed out neurotic chihuahua’s eyes on a hot day without water. And just when you think your arm is about to fall off from lack of blood, oxygen or general feeling, the cuff releases, sending a surge of blood flowing so strongly that your tingly fingers burn with renewed circulation. It’s like bringing a dying person filled with 23 bullets back to  consciousness – they go from sweet, blissful nothingness to searing pain and agony. This is what the arm is thinking, and it’s cursing you with everything it can. This series of events occurs every 15 minutes for nearly 24 hours, so if you had hoped to sleep that night, the joke’s on you. Even the strongest pot won’t keep you knocked out. (Trust me. I tried.) And then, on little to no sleep, you have to make your way back to the facility that’s an hour away in order to return said torture device so they can tell you that there’s no sign of hypertension.

But you already knew that, because you weren’t being sent for hypertension, but for hypotension, which won’t show up because the activity of the day and the stress from the cuff and lack of sleep increased your stress and blood pressure enough that it landed in the perfectly healthy range and is not at all representative of a normal, uneventful day at home where your blood pressure has dipped to the mid 70’s.

But, thankfully, there was a hint of excess night-time blood pressure dipping, which IS normal for me. Not that it’s normal – but that’s what mine does. It seems minor, but perhaps there’s a hint there.

Otherwise, blood work and echo and ECG all came back normal, just like everything else.

Interesting enough, though, I received my report from BestDoctors.

What’s that, you ask? That’s a good question. I wondered that, too. I couldn’t find much out about them, but I noticed it was something provided by my husband’s benefits plan, so I had decided to check it out. When things started happening in April and after my head CT, I had messaged them just to get more info. Before I knew it, I was going through all of my medical history and issues, which were many and complicated, and the voice on the other end began to turn surly and continuously asked if these symptoms were all related.

Well, of course they are. They’re all happening in my body, and all the systems in the body are connected. There’s very little you can remove or have break down and have absolutely no consequences for that which requires compromises or treatment to accommodate the missing pieces. Try running an engine without the spark plugs, or filter, or anything else. All the pieces are there for a reason, and without one part, something else will breakdown eventually.

I remember he asked me to just focus on one system, so we focused on digestive issues. When I mentioned that I have endometriosis, he responded that that’s not a GI issue. I had to explain to him that endometriosis could grow on different organs, or even just inflame and affect different organs, so I didn’t understand why I would leave it out. He said it was impossible for that to happen because endometriosis was the inside of the uterus that shed each month.

No, dear. That’s the endometrium. There’s a difference. Is there someone else I can talk to?

No?

Pity.

There were red flags right from the start, from difficulty with messages, with misunderstanding what I said, writing different terms down than what I offered which did not apply to my case…. I wasn’t so sure about these guys. But figured it’s provided with the benefits package, it’s free, what harm could there be?

After months of waiting, and not being able to get through to the rep that was dealing with my case, I finally called the main number to inquire into the status of my report. It took another week, but after 5 months of waiting, I finally got it.

And wasn’t impressed.

It seems they decided to agree with the neurologist who read my CT and told me that I was depressed with symptomatic disorder, with a potential for an autonomic disorder, but with high doubts.

Nope. So much nope. My first knee-jerk involved unkindly comments directed towards the physicians who offered the diagnosis, followed by instant self doubt and questions directed at myself. This was the second diagnosis like this – what if they’re right?

And then I remembered how many physicians told me that my knee was fine, or that there was nothing else wrong with me except that I was obese, or the gyne that sent me away with “normal” menstruation pain that was excruciating, and I’ve been living with for so long because I thought that’s what women everywhere were doing.

Gaslighting happens so often in doctor’s offices, and if you look into your regions health care associations you’ll be able to find a physician’s code of ethics they are sworn to uphold. In there is usually a statement regarding patient care and putting bias aside in order to provide the patient with the care needed, and that the patient is to treated according to the symptoms they describe and not what the physician believes.

There are many, many physicians who do not provide care according to the code of ethics they have sworn to, and I strongly feel that the ones providing the service at BestDoctors are some of the same caliber.

I didn’t really know how BestDoctors worked, but after chatting with some people about my results who also have this service, they had very similar results from this company, as well. They were given an easily dismissed diagnosis with no treatment, except perhaps psychiatry, and left the patient to decide who to believe and what path to follow. One lady ended up going into heart failure the following week after she received her BestDoctors report, another suffered anaphylaxis despite her report stating she was not having allergic reactions, and another yet was diagnosed the same as I was when she ended up being diagnosed by her personal team with MS, POTS and a number of other illnesses with comorbidities.

How did this happen? How is their judgement so way out to lunch?

One of the biggest red flags could be a part of it – right at the beginning, when they only wanted to focus on one system. This is a mistake in so many ways, because when one system is struggling the others are working harder to accommodate for that failing system. They’re all affected. So how can you know where the base of the problem is if you only look at one body system?

Another red flag is that this service is paid for by the insurance companies.

What do insurance companies hate the most? They hate actually paying out claims, and want to keep as much for themselves as they can. That’s what the insurance business is all about, so it’s to be expected.

By minimizing a patient’s symptoms, they minimize what a patient needs, including medications and equipment for their treatments. In this way, the insurance company can also minimize payouts to those patients. They patients feel they have been heard, and the insurance company has less to pay out for.

It’s an insurance scam, in my opinion, and I totally fell right into their hands. I felt really dumb for it after, too. But – one bonus is that I can see most of the recent lab and test results myself, which I’ve been able to track down some clues that I’m not sure my physicians have picked up. Not that I blame them for that! They are tiny, tiny clues, but ones that I can acknowledge because it’s what I’m living. Yes, a high RBC count COULD indicate that I’m dehydrated… but what if I’m drinking 3-4 litres of water, plus electrolytes and other fluids, and have a low urea result? Low urea could be a sign of overhydration, among other things.

But, what if I’m NOT dehydrated? Perhaps that’s a sign of something? Like mast cell production? Which ties in with endometriosis, as well? What if that’s the connection that’s being missed because it’s such a small discrepancy that it doesn’t seem worth exploring?

I like puzzles and clues, and this was the reason I went into health care to begin with. I love researching and digging into the physiology of body systems and connectivity. The body is really super neat, and science has come a long way to keep people living longer – but I think every so often people forget to look outside of the textbook and to connect the dots that may waver a little bit from the norm.

The actual, real, face to face care team I have has been working hard to help, and we seem to be narrowing things down. Currently, there’s a “soft” diagnosis of POTS (Postural orthostatic tachycardia syndrome – essentially, the heart rate increases excessively on standing and can cause a multitude of issues).

I joined a POTS group to learn more about it, and everything fit well. There was a question burning in me, because it’s weird and I’ve never really been able to describe it. So I asked:

“Does anyone get dizzy by just looking up?

Or just looking around a white room, like a doctor’s office?”

Most people I’ve told about this have looked at me like I have two heads, so I kept it simple and wanted to see what people said.

My entire chaos had suddenly been met with validation, and I cannot portray how much relief I felt in seeing the responses, some of which were able to describe exactly how I feel. “Dizzy” is a term I use loosely for this, because it’s hard to put some sensations in to words. But some members found them!

  • The horrid lighting at target and Walmart makes me pass out now. Which is a real shame considering my love for Target 😭
  • Yes. Either dizzy or a real detached type feeling
  • Detached! Omg I get the worst looks when I describe this. I’ve said it’s like I’m not in my body and looking at a computer screen.
  • Sometimes. I hate it. Especially if they have the fluorescence lights
  • YES things move in like slow motion and it feels like it’s not real its hard to explain
  • Yeah!! I used to think I was schizophrenic maybe but after joining this group I feel more reassured lmao
  • Yes. Lighting in stores makes me go fast for the exit often. My doctors know to turn off the lights for me. Everything goes white and then dissociation kicks in and then panic. Was diagnosed with POTS but am going to an endocrinologist and neurologist bc my pupils stay small and pulse, yet my eyes are healthy. Trying to solve this mystery for years, I have Ehlers Danlos Syndrome and this set of symptoms has held me back the most.
  • Yes, it almost makes me feel like I’m going to pass out.
  • YES I get dizzy if I change eye positions quickly like if I turn around fast or if I look from one side of the room to another I get really dizzy. I also can’t look at anything all white because the image starts to warp and I see lights and stuff it’s really hard to explain
  • Yes- this sounds like it! It’s not so bad in the house, but mostly in bright/flourescent light and/or all white rooms. And it’s kind of like there’s a thick black veil over your eyes and everything seems darker, or muted? Like you’ve turned the brightness level down on your phone screen, but with your eyes…. It’s so freaking hard to describe. Lol

There are so, so many people who have the same struggle to describe how they feel, and it’s hard to understand what they mean unless you’ve personally experienced those sensations. This makes it (understandably) so hard for physicians to pinpoint causes and to think that patients might be making things up, but what some of them fail to realize is that there are sometimes no good descriptions for what a person is feeling.

I personally look up my symptoms no matter what it is. I don’t tend to visit my care providers unless necessary, because sometimes it’s easy to find out if something is serious or not. I don’t go in for head colds or flus or coughs or anything else – I do what I can to suffer my immune system to do it’s damned job on its own. And it typically works out just fine. I’d never seen another doctor regarding my sun allergy after it was dismissed as contact dermatitis. I’d never gone back for pain in my abdomen after my gyne rolled his eyes at me. I’d never complained about the pain in my hips, because it’s always been a family trait that no one took seriously, so I didn’t either. When these symptoms started appearing, I started trying to find answers and solutions to feel better, and the more symptoms came up, the more I searched. Of course I’m focused on them.

They suck.

The average amount of time to diagnose POTS and similar hidden, chronic illnesses is 5-6 years. Nope. I’m not waiting that long like this. It’s easy for others to say “Oh, just focus on something else” – but unless you’ve been in these shoes, it’s hard to truly understand and appreciate wanting to get better. And sometimes, doctors don’t work fast enough because they truly have no way to know the extent of what a person is living with. I’ve been told that it could potentially take 8 months for surgery for my cyst to be removed, which is growing, painful, and is likely causing the majority of these symptoms to begin with. It’s been five months already, and I’m not really keen on the idea of waiting twice that long to resolve these issues. I don’t understand how these kinds of things aren’t triaged with decent timing.

When real issues aren’t addressed as real issues, they don’t just magically disappear. More and people – especially women – are faced with a similar hesitations to address their medical issues due to being disregarded and not wanting to waste time to be sent away without any answers, like they have been so many times before. Those issues keep building, and the stress with it. This is when self deprecation, depression and anxiety begins to build up as well, because people no longer know what’s normal and what’s not – they aren’t taken seriously, so they stop taking themselves seriously, too. They stop advocating for their own health because they are led to believe that they don’t know any better.

People – it’s your body. YOU know what you’re feeling. YOU know when you don’t feel right. And after falling victim to gaslighting in medical offices for so long, I’m done with that. I’m also done with feeling miserable, and am really looking forward to the day that I can do more without suffering so badly from it. It’s on the way. In the meantime, I’ll just keep on keeping on!

Namaste!

 

Awkward Conversations

“Krys! Oh my god, you look SO GREAT!” she said, gesturing down my body with her hands and eyes. It stung, but she had no idea.

I get it. A couple of years ago, I was over 220 pounds on my little 5’3″ frame. I hid my lumpy shape under hoodies and oversized t-shirts. I lived with the shame my grandparents’ words implanted in me from a young age. “No one wants to see a fat woman. It’s not so bad for guys, because they can get away with it more. But people really want to look at pretty women, so that’s what all women should strive to be no matter how much they have to change to achieve that attraction. Walk with a broom under the arms, walk daintily in heels, spend the extra time to trim the frizzy hair so it doesn’t show, eat less even if you’re hungry, cover your face entirely with makeup because it’s naturally too red. Don’t show your real face to the world, because the world won’t love it the way it is.”

That shit stays with you for a long time, especially when drilled into you when young, and even when other people try to minimize the impact of it – it doesn’t change the fact that my emotional well being wasn’t based on anything healthy growing up. It’s what I knew, and trying to change that takes work. That path had deep treads, and finding a new route doesn’t come with a map. It’s work (but it’s worth it).

It took a long, long time to break away from those limiting beliefs, but I did. Mostly….. there are still smoke tendrils trailing behind me. But I still didn’t feel good about my body or health, and my self esteem was suffering as much as my health. So I started to focus on my health, and that’s a story that’s recently been underway. I worked hard, reduced the pain I was having as well as my pant size and was feeling so great and healthy. My yoga practice progressed a long way and I was feeling fit, confident and energized. Until, one day, not so much. All of the energy I had been enjoying was suddenly in a negative and I’ll never forget that day when I realized that something was very, very wrong, and it has progressed downward from there.

“What’s your secret? Are you doing the keto diet?”

The questions seem to be harmless, but I can’t help but feel like people are not really paying attention to the bigger picture.

I hear how great I look frequently from people I see, and on Instagram and Facebook like it’s something to celebrate and something I should be proud of, but this time I’m not really happy about it. This time, my weight loss is from being too scared to eat anything for fear of razor blades tearing up my belly, or exiting too quickly to be of any benefit. It’s from the loss of muscle mass from watching Netflix and as many golden buzzers from Britain’s Got Talent as I’ve got the happy tears to share in those people’s moments (trust me – they are unending). It’s from eating from a limited selection of food that doesn’t make me feel like having a night out in my bathroom.

I have become anorexic. (Not to be confused with anorexia nervosa, keep in mind. It’s definitely not voluntary. I love food, but it’s not a thing I can enjoy like before without horrible consequences.) It started during my final week of yoga teacher training in June and has progressed to the point that I’m struggling to keep anything in my system long enough to absorb nutrients.

That was a hard lump to swallow and to admit. For someone who loves food, this isn’t easy or fun, and it’s an adjustment that I’m not used to. Hopefully I don’t have to get used to it  for long. I’m looking forward to enjoying meals again.

I’m fitting into smaller clothes. My ribs and hips are starting to make an appearance. My cyst can be visibly seen in my abdomen when it feels like looking out from it’s nest in my hip. My hands have become skeletal. My skin is becoming parched and papery. My hair is becoming dull and is breaking easily, and there are days that I have twice as much hair fall out than usual. Yes, I still have bulk, especially in my lower extremities, but it’s soft and disappearing more quickly than I’d like in a way that I don’t want it to.

My eyes …. the thing I’ve always loved most about my physical appearance… they’re tired. I remember wearing red eyeliner under the thick black raccoon shadows in order to create a bit of a darker, creepy look during my high school goth days, and now I don’t need makeup to recreate that. It’s just part of the look, now.

Hm. Maybe I have a career lined up?

Ha. No. Kidding.

But damn, I’d save alot of money on eyeliner!

What’s my secret?

It lies in hiding the shaking in my legs when I’ve been standing too long. In making it to the closest place to sit down before my vision goes completely black. Or, at the very least, a wall to lean against while my vision returns. The secret is in keeping my hands warm enough that I can grasp a pen without my hand seizing. It’s finding a position where I’m in a little bit less pain (which doesn’t go away) so I can concentrate better on whatever it is I’m doing. Sometimes it’s getting comfortable enough so that I can just do nothing, because moving hurts and motion creates waves of nausea. It’s going downstairs to do something and forgetting – over and over and over again until I actually get it done or forget about it entirely. It’s asking for help when I can’t keep up. It’s in dressing up a little to pull attention away from the rest of me. It’s learning how to breath in a way that doesn’t cause my heart to race and my vision to blur, despite the intense breath work learned during yoga teacher training that I can’t use right now. It’s in keeping things short and sweet. It’s learning to listen really closely past the constant screaming in my ears that spikes frequently and drowns out sound for a moment. It’s in speaking more slowly to give me time to find the vocabulary that slips away like a dream after waking. It’s in pulling my shoulders back long enough to look strong, when the truth is I’m ready to collapse. It’s in learning to say “not right now” to things I really want to do.  It’s in letting my fear over my situation rage on occasion so that it can rest again later. It’s in drawing boundaries and letting people know when I’m overwhelmed. Which is often.

Maybe the secret isn’t much of a secret at all. The “secret” is letting people see what they want , and in letting them say what they do without correcting them. Because does it really matter? I feel terrible, and I believe it’s easy to see… but maybe it’s not? Maybe it’s easy for me to assume that simply because of the way I feel. But that’s not what people want to see, or draw attention to. Is there’s really a harm to them or to me in simply accepting that compliment?

Correct me if I’m wrong, but I really don’t believe there’s any harm in it. Perhaps even more harm to us both if I draw attention to it and make things more awkward than they already are.

Perhaps my physical degradation actually does look good to them. Or maybe they only see that one detail because it’s the most obvious. Or perhaps they do see what’s going on and just want to make me feel better.

It doesn’t make me feel better, really. It kind of brings my attention back to how I feel, which is a constant anyways. But what does matter is that they are there, and they care. And THAT is what makes me feel better. And THAT is what I choose to take out of it after an initial knee-jerk reaction in my head that screams “WHAT?!”

 

I choose love and gratitude. Always.