It’s all a matter of perspective

“You’re such an inspiration.”

“I don’t know how you do it.”

“When I’m having a bad day I just remember what <insert name here> is going through and realize I have nothing to complain about.”

“I shouldn’t complain, there is always someone worse off”

You’ve probably read these few starting sentences nodding to yourself. Agreeing with them, or have uttered them on a number of occasions. I’d be lying if I said I never have, I have. I wish I could go back in history and stop myself. I know one thing, future self won’t say them. I’m writing this in the hopes you also will reconsider those words in the future.

I have heard these sentences directed to me on more than one occasion. More so recently for some reason. I’m not a saint, I’m not an inspiration and I’m 100% NOT a meter stick.

Every time you compare your hardships to those going through a difficult time, or are living with a difference it doesn’t accomplish what you think it does. Let’s look at just the examples below. As I write this I will try to be as well rounded at seeing both sides as I can

“You’re such an inspiration,”

I’ve covered this one before. When I think about the other side of this one, I know that it’s not said with any malice. It’s said as a term of appreciation for the strength of character, determination, and drive that person is showing in the face of adversity. This one is very universal in its application, said to literally anyone going through a giant life altering struggles or perceived struggle. A lot of times it’s said about people we don’t even know.

How it lands is that you are praising me for simply existing. That fact that I can do the same mundane tasks as you; like doing dishes, paying bills or taking out the trash, shouldn’t elevate me on to some pedestal to be admired just because I do those tasks with a difference. On the other hand if my choosing to share a story inspires you to do good, donate to a charity, or be less like an asshole, I’m ok with that. What my ask is, think about WHY you say/said this, try to be more specific with how you are feeling. If the reason why you are saying this is because my struggle or existence makes your life more shiny or tolerable than maybe you need to have a deep thought session and reevaluate things.

“I don’t know how you do it”

This one when said can go either way. When I hear it from loved ones I know there is no ill behind it. This is not one I’ve said to another human so am struggling a bit to be on the other side. Every time I hear it it always hits me with a negative connotation. Like “I don’t know how you do it, looking like you” or “man, I don’t know how you do it looking after your <insert loved one here>”. I know my friend who has twins got this question a lot in the first few years of her becoming a mom.

This sediment is often used as a meter stick to ones own life and struggles. It really only serves to devalue not only those it’s directed at but the individual who utters them.

As the one who gets it directed at, here’s the thing. My life, struggles, hardships, or wins (lol) are NOT a meter stick for which to measure yourself on. Just because I’ve had to deal with one thing after another after another doesn’t make me an inspiration any more than it makes me unlucky. I share my life and struggles willingly not out of some need for vanity, or for validation that I’m living up to what you feel I should. Rather I share my shit show of a life to be a part of a greater community, the human community. I share my struggles with living with a facial difference not to gain your pity, sympathy or even empathy but rather to normalize looking different.

“When I’m having a bad day I just remember what <insert name here> is going through and realize I have nothing to complain about.”

I would say this one seems a lot more prevalent in recent years. Another one who’s intentions are rooted in good soil but end up in a bad place. Yet another meter stick. Another one I struggle to see both sides of.

Why is it ok to feel better about yourself or your life after thinking about someone who is struggling? Whether that person be rich, poor, famous or infamous, their life is not ok to use as a crutch to make you feel better.

“I shouldn’t complain, there is always someone worse off”

Related a bit to the last one, and the one I heard most often by those saying it to me, when I voiced fears. The one I internalized and said not only to myself but to others. When I said it it was to give me strength. I said it because I thought it meant that I was honouring those who maybe had struggles greater than me. If I could get through that day, that procedure, that minute I would be better off. I was oh so wrong.

I’ve learned that it’s not ok to belittle your own struggles, fears or feelings not matter how small they seem to you or others. It only serves to give you a false sense of security instead of dealing with what you are going through. I get we humans tend to be competitive but this is not an area where the strongest or weakest are at odds.

I hope that writing this it doesn’t come off as preachy. I know I’m not the first one to write this sort of thing. I love to let you all in to my life but I also share things in part to help me process my world. I don’t always need a solution, suggestion, or comment, what I need it to be heard, to exist sometimes outside of my own head. Hopefully one day those with differences of any kind are given level footing.

Still here, day 17 of bleeding.

Written on Thursday June 27th, 2019

So it’s been 3 days since I wrote my last post, since I saw the nurse practitioner at my doctors office. I had bloodwork which came back quickly, the office hasn’t called so I’m taking that as a good sign. I can see the results and there are no flags but I’m not able to fully grasp the picture it’s painting.

The other test she has ordered is a transvaginal ultrasound. If that doesn’t sound fun to you I’m in agreement with that. I’m not looking forward to it. I googled it extensively and found that it will not be pleasant. The lady who booked it said I have to drink 1L of water about an hour before hand and hold it in. I can assure you that will NOT be happening. I will drink what I can but 1L is impossible with out me vomiting it up or peeing my pants on the way there. They are so booked up that I can’t get one until July 12th with my follow up being on the 15th. That means these posts may go live at that point or may just get deleted, I’m hoping for that.

I’ve never been ashamed of having my period, I never openly talked about it outside of talking with my sister but in recent years I’ve followed in some amazingly awesome women’s footsteps. When I’m at work and have to change my pad, I don’t hide it, I carry it out in the open. I’ve openly told co-workers that I have it as a reason why I I’m feeling shitty that day. I’ve told both male and female co-workers, I don’t care! If a guy doesn’t know that this happens to women by now, not my problem. I will not be ashamed, I will be honest.

The following was written on Sunday June 30th, 2019

I feel like I should start these posts with a star date as if we are in the Star Trek universe…lol

I’m still bleeding so it’s day 16, that’s nuts. I’m uncomfortable to the point if I sit in an desk chair for long periods of time I start feeling sick. I hope that symptom is all in my head.

My sleep seems to be fairly normal but my appetite and how much food I can eat seems to be low lately. Also I’m peeing a hella much. I used to be able to go a crazy (most likely unhealthily) amount of time between feeling the need and actually peeing. Now I not only going more frequently I can’t seem to hold it as long.

I’m trying not to think of the worst but that’s always where my thoughts go to. I have a brain tumour for heavens sake so ya know… thankfully that has turned out ok-ish (so far).

I think about past lives and think I must have been a horrible person to explain all the crap I’ve had to deal with in this life. But then I think about how much easier for me it will be to be the one going through it, whatever it might be. It would be so much harder if it was my sister, or my mom going through any medical crisis, but I’m a seasoned pro. My brain also thinks that after all the testing and what not nothing will show up and the doctor will just shrug it off and I will just have to deal with it.

Written July 1st

Random thought: how can my body still be bleeding FFS? Seriously 17 days straight, morning, noon, night…where the hell is it coming from? Between the 11th and 14th day it got quite a bit heavier but has gone back to the flow rate of what it was on day 10. Still there, but heavier than what a light days pad could handle. Day 17, wow…

Don’t mind me, just bleeding here!

Written on Monday June 24th, 2019

I’m on my way to the doctors. Pretty nervous. I don’t want to write this. I hope with any luck this post will never see the light of day but if your reading these words it’s not great.

Editing this on June 30th: I have ZERO results but posting anyways because like most things I do, I want to make sure others don’t feel alone, including me! So I’m posting this and that’s that. Some of you reading this already know, I love that you listened, gave me advice, and tried to make sure I didn’t over think (Thanks Kim <3}. To everyone else reading this, I’m ok, well emotionally I’m ok I’m on a roller coaster and just hanging on for dear life! Ok that’s a long edit message. On with the post!

I always said if I faced a big health crisis I wouldn’t ask for help. I would tell as few people as possible, put my nose to the grind stone and just deal with it. But recently a saw a video from Simone Giertz who had to under go weeks of radiation treatment for a brain tumour. Watch this video of hers Time stamp 8:50 but just watch the whole thing. She said she was like me in terms of not wanting to ask for help, but what she said next has stuck with me. She said that when she did everyone offered to help, so instead of dreading her treatments she looked forward to spending time with that given friend. That is such a bright thing to say and I hope if needed, I do would the same.

But kind of getting ahead of myself. WARNING: The following deals with monthly cycles so if this is not a topic that you are comfy with, stop reading.

For the most part like most women my period has been its own thing, different from others but stable for me. When I was really young I went for extensive hormone testing where I remember hearing that they didn’t expect me to go through puberty at the age most girls do. They figured probably 16 or later and/or with the help of drugs. Well they were wrong and January after turning 12 I started, just after gym class, the whole school some how learned, it wasn’t a great day. But since then I’ve gotten it every month, twice in the month of June when I was 16. I have a set cycle (as most women do) I get any/all the PMS things, it comes light at first, heavy for a few days then light again for another few days. I get cramps, most of the time they are brutal, I get migraines, and such. Afterwards about a week later I get discharge for a few day to a week. Typically I get a week or two at most per month where I’m not dealing with some aspect of my period. But that’s always how it’s been, that’s me, I’m ok with that.

Earlier this year things started to change. I started to spot the tiniest amount between periods. I didn’t think anything of it at first. In early April (on time_ish) I got my period, seemed normal, then 14-ish days later I got my period again. Figured maybe it was a one off, just changing cycle dates, no biggie. I got more spotting, but so tiny that even though my brain was screaming “THIS IS NOT NORMAL” I ignored it. After that and 19 day after the start of the last one got it agin and 20 days later again, and 18 days later again. This brings us to June 14th where things changed again. This flow was/is NOT a flow at all, it seems to be a slow drip a few clots here and there but nothing else. Enough for me to wear a light days pad, too much not to wear anything. I’m on day 10 haven’t had a period last this long since I first got them.

So I’m heading to the doctor with fingers crossed I will be able to delete the words I’ve just written. But only time will tell.

Like ever other fool I know, I’ve used Dr. Google and I’ve narrowed it down to 4 things.

1) pregnant ~ Nope

2) premenopausal ~ maybe, I am 37 so not unheard of

3) ovarian cancer ~ lord I hope not but the symptoms fit.

4) stress ~ ok this could be a thing but my stress level hasn’t drastically changed. Been stressed every day for the last 6 years. Doubt it caught up with me now.

Needless to say out of these I want it to be stress cause I’m not sure which of the other ones frightens me more. But until after my appointment I won’t know what I’m in for. And most likely won’t know even then..

EDIT:

Well I’m home, it’s been hours since I got home. I had a great conversation with the nurse practitioner about my issues. She has ordered bloodwork and a transvaginal ultrasound. I’ve done the bloodwork, having some medical knowledge I know what she is testing for.

She has agreed that what I’m going through isn’t normal. The two possible things she verbally told me it could be is something called fibroids or I’m pre-menopause. Makes sense and honestly hope it’s one of those. The bloodwork she wants is testing for tumour indicators in association with ovarian cancer but did not order CA-125 test so I could be wrong.

Like I said at the beginning I hope I will be able to delete this and you have not read a word of this.

written June 30th: clearly I posted this, let me stress I’m not looking for sympathy, or pity. I’m good at throwing my own pity parties and they are exclusive events you are not invited to. I’m just writing this trying to make sense of it, process it, and maybe someone else in the future going through this will know they were/are not alone.

Mother’s Day (a caregivers perspective)

First off, I hope all the moms who read this have an amazing day!

Happy Mother’s Day

I grew up in a single parent household, my sister and I had our mom and that’s it. To this day pretty much the only family we have is our mom and each other.

As a kid it was fun to make crafts at school and give the, to her. As we got older friends of hers would give us a little money and my sister and I would go get something we thought was neat. I remember one of those shopping events where we went to Eatons and I remember having NO clue what to get her. My sister picked out this very cute silver dog statue thing and I remember being so mad at myself so frustrated I ended up getting what was probably the worst gift I’ve ever purchased. I got her a big sponge in the shape of a watermelon slice, not a wedge slice but half a watermelon shaped slice. To this day we still have the dog statue somewhere but the sponge is LONG gone, sadly my feelings toward it, not so much.

As an adult I think I know why I was so frustrated even if I didn’t know then, I didn’t know my mom. Like really know her, didn’t know what her favourite colour was (actually still don’t), didn’t know what her fav food was (again not really sure now), wasn’t sure what she was in to or liked to do in her spare time. Observations helped as I got older, I learned what she didn’t like in terms of food, and clothing, learned that she really did love jewelry of any kind as long as it was pretty, she loved music and hockey.

My mom and I have an odd relationship, and I guess we always had. I don’t consider my mom my best friend, nor someone I could/would go to for advice, not someone I could/would share my deepest secrets or desires with. Please don’t misunderstand me, I LOVE my mom but her and I have never really been close. She tucked me in every night and kissed me on my forehead and those are the moments I cherish most.

When I was old enough to get a job it seemed our roles reversed. I didn’t feel like I could go to university or collage, she never encouraged us to do well in school, as long as we passed or just made an effort it seemed to be enough. She didn’t want us to leave her all alone. So I got a full time job and started paying some of the bills. She spent my money as she did hers, and I let her. But we never ever talked about our feelings. I equate talking with my mom to talking to a brick wall, get pretty much the same results, it ain’t easy.

As I made more money her demands for more and more expensive gifts (for all holidays, Mother’s Day included) were the norm. I couldn’t just get her a card and some flowers and feel as if she would truly appreciate the thought and the sediment. I could never write mushy notes on cards and watch her tear up with absolute joy and pride.

Now as my sister and I are her full time caregivers the lack of appreciation is something that is thread throughout our daily lives. In small comments and big outbursts my mom displays. It’s exhausting.

My mom had a rough go at life, she never had great examples of how to be a loving mom, or a truly caring mother. And I get that, I love my mom and I’m sad with how things turned out.

I see the posts from others praising their mom, hearing how their mom is their best friend and that they could go to them for anything and I get so jealous and angry. I never had that and I want it!

I think I’m writing this because I know I’m not alone. I know that Mother’s Day is hard for a ton of other people. Not because their mom has passed but because their mom is here but was never really there for them. I want to write this not to shame my mom, but to put my complex thoughts out there in the hopes it resonates with others. I know that my mom felt she did the best she could do and doubt she would not go back and redo it and I’m ok with that. I’m happy with the person I am because of her. I did learn a ton from her, May not be what she had intended to teach me but learn I did.

Mother’s Day like most things we celebrate isn’t all sunshine and rainbows. It’s ok to be sad and ok to try and process your feeling for your mom without guilt and shame.

Sleep? What’s that?

I’m exhausted, I always have been. I have never (for real, not an exaggeration) had a restful nights sleep. I don’t know what it’s like to wake up, get out of bed and not feel like I need another 6 hours of sleep. When I was a kid the first thing I did when I got home from school was crawl in to bed and take a nap, this continued until grade 7 or 8 or high school, I’m not sure.

I can at any point lay down and fall asleep. Fun times.

I would imagine a good portion of those reading this will be like “ME TOO!” We are kindred spirits you and I.

In addition to this I snore, like a really big chainsaw. This also has happened since I was a kid. As a 30-ish pound under 4ft girl I could snore as bad as a guy over 6ft whatever he weighed. I’ve kept my poor sister from sleep any number of times. I’m told I can be heard through walls as well as on multiple levels of a home.

Most people would assume that because of the snoring they would have some form of sleep apnea. As a kid I was never told this was something I needed to be worried about and my mom didn’t pursue this as a something that should be looked in to.

I’ve had now three sleep studies and they all have pretty much determine that I don’t have traditional apnea. At no point do I stop breathing while I sleep. That is both really good and really frustrating. You hear a lot of people who search, and search for a diagnosis express relief at finally knowing what is wrong. Even if it’s bad, they have something tangible, can take the next steps. So although I’m glad I’m not at risk of dying in my sleep I’m frustrated that I can’t have that as my answer. Not sure why I’m at all surprised, that’s been my norm, to be so far from norm. The phrase my sister and I always say, that seems to be our mantra NOTHING IS EVER EASY. Ever, for us.

What I did learn is that the mechanism that exists for those with apnea is the mechanism that I’m experiencing. Essentially what that means is that for those with apnea they can get a CPAP machine and/or make some lifestyle choices and they will see a huge improvement in their quality of life. Because my problem isn’t tied to that the solution isn’t as quick and easy. In fact as I write this I don’t know what the solution is. I am trying the CPAP machine and at the very least it’s giving my sister a much deserved break from hearing me snore but other than that it’s doing squat.

The mechanism I’m talking about is one that happens in the brain. The signals are getting mixed up. One doctor once told me I go through the cycles of sleep in the wrong order. You get your restful sleep in REM sleep but for me I tend not to even get there, my most recent sleep study revealed that on average my brain “wakes” between 15 and 40 times an hour. In these instances I’m not conscious, but the signals firing make it so my brain is.

What I fear and suspect is that this isn’t something that can be fixed. I’ve taken medication that has made me “sleep” but I’m still bloody exhausted, and wake up feeling like an exhausted zombie with dry mouth. To grapple with the ramifications that I may forever be exhausted is something I’m struggling with. I worry that my sister will get tired of hearing my comments about it.

It does explain a shit ton so i am glad for that. But I will need to learn how to live with this. It’s one thing to have always been tired and joked about it. Just figuring that it was just life figured that the last 6 years of stress was just that, stress. To know that I have a medical condition on top of all my other ones that leaves me chronically exhausted… man that SUCKS.

I look around my house at all the stuff I let go because I have zero motivation, zero energy and I’m kind of glad I’m just not lazy. But I am lazy, just because I’m exhausted doesn’t mean I shouldn’t be able to push through it but I’m just so tired. This is the stuff that goes through my brain. Nothing has really changed except now I know I’m not crazy, that there is a legitimate reason for me feeling like I do. I have no doubt the past 6 years have added to it but like everything I just need to keep putting one foot in front of the other. Because at the end of the day, what choice do I have? Unless I win the lottery I still have to get up and work everyday, still have to make sure the needs of my family are met, still have to make sure there is food on the table and bills are paid. Which on that note I’m $663 lighter after paying my property taxes today! Go me, adulting!

I hope I will find something that works, or at the very least I find some coping skills to deal because not seeing a light at the end of the tunnel is scary AF.

What I hope you get out of this is a sense that you are not alone, that if you’re always exhausted due to your circumstances it’s ok to let somethings go.

Aging out of a system with no plan

I’m putting the cart before the horse as they say with writing this before I finish my series on finishing my “in to the past” series but this came up in Twitter so wanted to write it while it’s fresh.

I’ve not made it a secret that although my mom loves me she was never my advocate in the medical world of our lives. She wouldn’t keep notes, never follow up to go over what was next and as the years went, just pretending things were ok.

Although my early years were spent in hospital with many appointments and surgeries as I got older it seemed to drop off. My last major surgery was June 10th 1996 when they made a second attempt at trying to fix my jaw. After all of that was done that was it until I was I think 18 going on 19 when we got a letter requesting that we contact them. That started a whole new string of appointments as they looked to make a third attempt at fixing my jaw. This meant having to have braces as well as some teeth extracted. My Orthodontist was the spearhead of this attempt and recommended a different type of surgeon. Instead of a Plastic surgeon she wanted to go with an Oral & Maxillofacial surgeon.

I remember one of my visits with him talking about what procedure he wanted to do when another doctor came in. They chatted about me and my case and when the Dr I was there to see had said I had been through two failed attempts one of which was a fully supported bone graft the second doctors response was “that shouldn’t have happened”. That pretty much should be my life’s motto….cause if it hasn’t happened before or shouldn’t if I’m involved it will.

So I had some dental work done and braces put on. The Dr that was going to do this work ended up having his own health issues and my orthodontist never seemed keen on referring me to anyone else, things just kept getting pushed further and further in to the future. My mom never intervened and as I had a job at that point it fell to me to pay the 25% of my braces not covered by our universal healthcare. At this point you are probably wondering why I didn’t speak up. To be honest I don’t know, I was just along for the ride and trusted that everything would work out. They didn’t.

After almost exactly 10 years the braces were taken off. Or what was left at that point as over the past year or so bits had been taken off for various reasons. What I found out later was that my Orthodontist had just been treating me and hoping no one would notice that I was WELL past the age I should be and still being treated at a children’s hospital. Eventually the powers that be did catch on and what was left of my braces was taken off and that was it. I was given the boot from the only hospital that I had ever been treated at.

In most cases as a person with continuing needs if care does need to be continued you are set up with an adult hospital and there is a transition so that you are not just left in the dark. Or so I’m told that’s how it should go but I’d be interested to hear from others how it was for them.

Because I got the boot with no follow up and no plan I’ve just been living my life with what I have. I don’t have any kind of retainers so every so often I can tell my teeth are shifting and it hurts like heck. I have one jaw joint that I’m sure as I get older will start to fail and the only doctor I’ve seen since that was remotely qualified to help said no. He also couldn’t find anyone that would touch my case with a 10ft pole.

I’m the type of person who won’t rock the boat. I won’t go to a doctor for a sniffle or a bad pain that hasn’t gone away in months. I just never see the point. I’ve learned from doctors that there is never anything they can or will do for me so why bother trying. So for now I just keep on keeping on because what other choice do I have?

I can’t afford dental care even with my employer benefits (who has $1,300 to pay up front for a root canal?), I can’t afford the time off work even if they could fix my jaw and my body sure AF prob would just reject it anyways. In other words I’ve thrown my hands up in the air and I’ve given up. I’m 37 years and 3 months old, I’m exhausted.

Bye, bye 2018

On the cusp of 2019 figured I’d write some of my thoughts on 2018. To be honest 2018 was much like 2017. My life isn’t that exciting. I didn’t travel, didn’t make any awesome purchases, it was just another year. My sister and I have been doing what we’ve done everyday these last 5 years, being caregivers.

The things I am proud of though, was I tried a craft show for the first time. It was a flop but because of awesome friends it wasn’t a failure. I did some sales of knitting that will take me in to 2019. I explored my art self more in 2018 than in previous years and that has me excited. I like making things, I like being creative. The other more important thing I’m proud of for 2018 is taking my health more seriously. My sister complains that I’m a lot like our mom whereby I won’t go to the doctors when I probably should. After much nagging (done with and because of love) I made the decision to switch to a new family doctor. This has been a good thing and has led me to be officially diagnosed with asthma and I continue in to 2019 working through that.

Things that I wish were different this year is my anxiety. I have zero issues talking about it, it’s a part of me but MAN do I wish it wasn’t. It’s been tough trying to just get through some days. I look at my house and the sheer amount of stuff that needs to be cleaned, purged, changed is staggering. I get so caught up in what isn’t done, what I can’t do, what I should do, I just end up sitting with bad thoughts and nothing gets done.

With that anxiety I think about how I shot my own career in the head. I was finally getting opportunities (after nearly 10 years of asking, trying) and finally on track to get the position I had my heart set on when I shut down and shut that window. The position I wanted comes with some strings with the hardest being having to work the crappiest shift which is 1pm-9pm, for who knows how long. It’s how it’s always been done and I accept that. However I’m not like everyone else and I can’t drive so working that shift would be a strain, and a sacrifice I’m not able to bring myself to do. Thus I watch that part of me just float away. I never knew what I wanted to be growing up. Even now I honestly couldn’t tell you. Right now I’m just trying to stay afloat, keep my head down and just do my job so that I can provide for my family. Being the main source of income, making sure the mortgage is paid, bills are paid, everyone has what they need most and a few things they want needs to take priority and this is a hard lesson 2018 taught me. The good news on the work front is I’m now working from home which is great both for my mental and physical health.

I hope in 2019 I complete the 3 big knitting projects I have set. I hope I continue to do more art and even sell some pieces. I pulse love to redo my basement so in 2019 I hope to win the lottery cause as of today the black mould down there is just going to keep spreading cause I really don’t have a way to secure $50K. I hope for 2019 my family/friends and I don’t experience any further hardships. I hope that 2019 I can be better, for myself and for those I love.

Happy New Year everyone. All the best.