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.

Art

As many of you know art is one of my happy places. My outlet when I have anxiety and heck when I’m bored I just do art. I don’t imagine myself as the best artist ever by any means but I enjoy it.

I do believe that art should drive conversion and be inclusive.

To that end I want to create art installations that will carter to those with little to no sight. So I am trying something different. I want to create universal constants for colours using everyday materials. I know that trying to describe colours to those who have never seen it is near impossible. So I’m ok not trying I want colour to be felt differently but the same across the board.

I will duplicate paintings I do using other materials. Each colour will have an assigned material that accurately depicts that colour. So those fully sighted will be like “yep that’s that colour” and if they are with someone who is low or no vision can “see” the same painting. They will be able to interact with the paintings. They will touch it and come to know that each colour has its own feeling. I will always use the same material to represent that colour.

If I’m ever lucky enough to have a showing I would provide a legend so that those who need it can learn the colours and go and feel the art which will be displayed with art for those who are fully sighted. Or at some point create full pieces or accessible art.

I’ve got some universal materials in mind but could use some help. It might be a bit crude and shades of colour might not be included but I’m sure my idea will evolve. Either that or fail miserably.

Here is my list thus far:

Black – Garbage bag

Silver – Aluminum Foil

White – Polly fill

Green – fake moss

Red – valour material (like that of Santa suit)

Orange – Safety Vest

Pink – faux leather

Blue – fake feathers

Yellow – fake sunflower petals

Brown – faux fur or cardboard

What are some ideas you have for colours I haven’t listed? Keeping in mind right now I’m not aiming for light shades or dark shades just want to see if this idea will fly.

Here is the first painting I’m going to try to duplicate.

The duplicate will be done shortly. Like with most ideas I think it’s a good one and looks amazing in my head but worried it won’t pan out. Thoughts?

A look in the past (part 2)

It’s been a while…(yep I hear the song in my head as I write this as well)! I’ve been busy with work but to be honest I’ve just been really tired and dealing with an asthma flare up. Still kind of dealing with that but it’s gotten a whole ton better.

 

We left off last post in 1981 with the only entry and now we move to 1982 were there are  a few more reports.

 

First up is the discharge report for the first surgery I’ve had. I was admitted on April 11th, 1982 and left the hospital on April 19th, 1982. The first  part of the report details “History of present illness” really just sums up what they are looking to do during this visit and doesn’t really talk about my history. They ensured that during my stay under general anesthesia that the ENT (Ear, Nose, Throat) team take a good look at my larynx.

 

According to this report my “Past History” is “otherwise unremarkable”. That’s a bit of a hit to the old ego!! Just joking, it’s good that there isn’t much to put here.

 

Next section is titled: “Physical Examination” and SURPRISE they just describe what they saw. I was described as “a tiny girl with abnormal facies.” Also the first mention of me being tongue-tied , this doesn’t wholey surprise me and makes an odd sense based on how my tongue is now.

 

The next section up is listed as “Course in Hospital” seems an odd name for a title but who am I to judge. This section is dedicated to describing the surgical interventions that were completed. I had surgery on April 12th, where they removed the 4 skin tags (3 by right ear and one on nose), they reconstructed the preauricular region to form a tragus. In other words that little blob at the opening to your ear that sits right in front of the opening wasn’t there so using what tissue was near by they created a little blob for me.

blob

They moved on to fixing my eyes where they repaired. My right one seems to have been easy they were able to get the two parts of the eyelid together without any issues. The left eyelid defect called a bilateral upper lid-coloboma extended to a cleft extended to the eyebrow. To this day my left eye brow is in two with a predominant spot where the eyebrow didn’t grow and where the eye was repaired. Because the left upper eye lid didn’t form or much of one formed they created one using a skin graft, it doesn’t say where they took the skin from but my mom once said they used the skin tags they removed to build the full thickness graft. Being able to create an eyelid so tiny has to be an art and I’m glad they did but my left eyelid is kind of thick and bumpy and makes using eye shadow on that eye annoying. The last thing they did was release the tongue-tie. As mentioned above they wanted to review my larynx which they did and found no abnormalities.

 

I had no postoperative complications and was released on April 19th with no medication or any other notes.

 

The next entry from 1982 is dated May 14th where I had a follow up as an out-patient. It’s a short entry so I will reproduce it here. “This child’s eyelids look really good. the only problem left is the left tragus which is not adequate. The ICD is 32mm, already and we are just going to have to follow her to make sure that she does not become too wide. I have already explained to the parents that we would have to do her hypertelorim when she is about 2 electively.” I did include a link to what hypertelorim is but in cause you want to skip that it just refers to the large distance between the eyes.

 

The final entry for 1982 is dated September 24th, just after my 1st birthday. It was again a out-patient visit for the surgery in April. Again it’s short and sweet so here is what it says. “This girl’s eyelids really look excellent today and we are going to get some new photographs. She does have an infection of the left larcimal sac and I’m sending her to back to Dr. Pashby to see about that. If Cr. Pashby is going to do anything at any time, I will re-align the eyebrow which has a step deformity. Otherwise I will see her in 6 months’ time, as she is going to need a hyperteloriam correction. I think probably around the age of 2 or 3. At the moment the ICD is 32mms..” No real surprises here but talking about fixing the distance between eyes still seems like it’s gone from something elective to something that they really want to get done. Looking at the only picture I have of myself at a young age it doesn’t appear that was actually done. I think the distance between my two eyes seem larger than the average person.

youth

Next up will be 1983 and might combine with 1984 we shall see!!

A look in the past (part 1)

Early May while in Toronto for an appointment I decided to pop in to The Hospital For Sick Children and request records relating to any medical conditions I have that I might be unaware of. A lot of times those with facial differences have other conditions that tend to be related to the facial condition and I became curious. As much as I love my mom she did a piss poor job of keeping records and as I grew older I wasn’t able to ask her questions relating to my time in the hospital as any attempt to engage in that type of conversation was met with either “I don’t know”, “I don’t remember” or just straight up silence.

So I got what are referred to as Clinic Letters and Discharge Summaries. I attempted to write a blog post before detailing these but it wasn’t working out the way I wanted and remains unfinished. My new approach will be to split them up in to years and dive in to what I remember and what on these really surprised me. The records span the years of 1981 to 2008. This entry along with the setup above will explore just 1981 as there is only one entry.

The following is a summery of the discharge report.

The first part tells that I was admitted on September 16th, 1981 and discharged October 22nd, 1981. This marks my first surprise. I was under the impression that I spent a lot of time in my local hospital before being flown to Sick Kids where I thought I spent another long stretch. This revelation makes me want to get my reports from my local hospital as I do know I spent time in the local NICU as I’ve had a conversation with a nurse who upon seeing me years ago remembered taking care of me for an extended period of time.

The next section talks about the Maternal History stating “Mother gravida IV, para III”, using good old Google I learned this means she had 4 live births but only has three living children. This wasn’t a shock as I learned of my sister’s passing from an early age. It also was no surprise that my mom went full term, having a normal delivery.

Next up is a sectioned titled “Neonatal History”, shows I weighed 2.190kg (4.8 pounds), this was a bit of a surprise thought I was 4.5 pounds. It mentions “dysmorphic features were noted at birth”. The mystery here is if my mom knew ahead of time to expect this, I’ve heard both that it was a surprise and expected. Guess both of those could be true but this one will remain a mystery.

The next section lists the problems as the doctor’s saw them so going to list them as they did.

Problem No. 1: Ophthalmology

There are two pretty big paragraphs in this section. Pretty much listing all that was wrong with my eyes and they are:

– A right upper lid mid-coloboma

– Total absence of the lower mid lid on the right side giving minimal exposure

– On the left there is almost a complete absence of left upper lid

– Incomplete development of the lateral canthus and left lower lid

– Exposure keratitis of the left eye with corneal ulcerations

– Absent left tear duct

What was surprising to me here is the fact that my right eye was also effected by my facial difference. I was only ever told that everything on my left was impacted. There is also no mention of the dermoid cyst that is present now and has been there for as long as I can remember. Essentially in this section they talked about taping my eyes partially shut to protect them from exposure and ulcerations. They used a few different ointments and eye drops. As I get older my eyes seem to be going down the crapper but there is no indication from this that it could have been prevented.

Problem No. 2: ENT

This second section is smaller, they go on to describe my abnormal feathers which are:

Bilateral accessory auricles and skin tags

– Small posteriorly-rotated ears

– Left external auditory meats ends blindly while right is normal (talking about the ear canal)

– Broad bifid nose with a skin tag

– Nares are present but appear small (meaning nostrils)

– Tongue deviates to the left

– High arched palate with sever micrognathia

– Left side defect of the mouth with macrostomia

Surprise here is that again the right side was impacted as this was where the bulk of the skin tags were. I knew I was born with them as my mom mentioned them but I assumed they were on the left side I also had no clue one was on my nose but that does explain the odd dimple like shape on the lower right side. I know my ears are not where they should be in relation to everyone else’s, it’s made finding ear phones every hard.

Problem No. 3: Plastics

Pretty small paragraph here, only a few sentences that talk about how the plastic surgeon would be co-ordinating my treatment. They expected to do my first surgery when I was two or three months old.

Problem No. 4: Neurology

Again a small section stating no neurological deficits found. However they did find a lipoma midline in the brain. I was shocked to read this I had NO idea that the brain tumour I thought was a recent discovery was in fact old news. They didn’t give dimensions so no clue if it has grown over time or if it’s always been 3cm x 1cm. This would have been handy to know growing up.

Problem No. 5: Genetics

This whole section was a surprise. To be honest I didn’t think they looked at genetics back in the early 80’s. This section reads “she has normal chromosomes, and the diagnosis is a combination of frontal nasal dysplasia and branchial arch problem.” From what I can tell this means what I was born with is in no way genetic but just poor luck. Genetics have come a long way since I was born so if I was ever about to think of having kids I’d like to have this confirmed so I know the risks of having a kid born with a similar condition.

Problem No. 6: Nutrition

Not a whole lot in this paragraph it goes in more detail about how I was fed. When I was first brought in I was fed via orogastric tube constantly however after a barium swallow test showed no issues with me being able to take food by mouth they thought they would try bottle feeds. This seems like it was a pretty big failure as I had a poor suck response and took next to no food via the bottle so they switched to a combo of bottle feeds and NG tube. They seemed pleased with my weight gain as I was 2.720kg (5.9 pounds) at the time of discharge. They seemed more concern that my head circumference was smaller than expected, went from 32.7 cm at birth to 34.7 cm at time of discharge. Not sure how much growth is normal in a newborn of just over a month old. Again not a lot of surprises here my mom told me that when she was home she fed me via eye dropper. However I’m not sure why that was and why she didn’t continue the NG tube feedings. My guess would be that the formula, tube, and other supplies cost money we didn’t have.

Problem No. 7: Other Systems:

This was the paragraph I was most interested in, this would really tell me if there were any other problems I need to be aware of. But according to the long winded paragraph everything tested came back normal, that includes my heart, lungs, gastrointestinal, everything. The major concerns were my feedings, my eyes and the rest of my face.

When discharged I was taking the following medications:

– Duratears ointment to each eye q.2.h (meaning every 2 hours)

– Sodium Sulamyd eye drops to left eye OD (this is confusing since they wrote out left eye and wrote OD which stands for right eye)

– Zinc Oxide to buttocks (every baby needs this)

– Normal saline drops to each nostril prior to feeds

It’s odd to read “talked to the Loker’s since my dad passed it mid 1983. I always wondered what his take was on all of this and what questions he asked.

That’s it for Part 1, I will try to get these written weekly if people are interested.

Ugly

According to dictionary.com the definition of the word ugly is

  1. Very unattractive or unpleasant to look at; offensive to the sense of beauty; displeasing in appearance.
  2. Disagreeable; unpleasant; objectionable.

Why am I starting a blog post with this? Well I’m glad you asked (it’s assumed that you did, if you didn’t go back and read the words before, ask the question….good all caught up) I’m about to share why.

I freely use the word ugly when discussing my appearance and I find people’s reactions odd. Just about everyone that knows me has at one point tried to point out to me that I’m in fact not ugly but far from it. They use my personality, my drive to help others, my advocate work, and overall comment on my inner traits that define me as a human being. They tell me I’m beautiful both inside and out. I often don’t respond or I just shrug them off. I don’t take compliments about my appearance easily if at all for the simple fact is I don’t know what to do with them.

My head is an interesting and scary place where my inner most thoughts not dare see the light of day. The one thought that has slipped out and often is how I view my own uniqueness. I think I’m ugly, I hate looking at myself and any comments or compliments that try to skew these thoughts tend to be instantly thrown away.

Don’t get me wrong, I do think I’m a fantastic person, I’ve got a lot to give, I’m witty, funny, sarcastic, and generous. My inner most traits are on full display and I’m thrilled that people seem to agree with me on those points and that they are so visible.

The inner most traits for which I cultivate and work hard to maintain are not the only things I’m judged on. All those who read this already have a volley of “OMG Penny you are not ugly….” comments ready to fling my way. I bet most didn’t even finish reading this post before sending me a text or a Facebook message telling me how great I am. I’m not fishing for compliments cause in case you didn’t read the above words I have no where to stick them. My brain can’t compute anything that you tell me, my brain thinks you are all lying to me simply to placate me even though I have no doubt you are telling your truth.

No one likes to be called ugly, it’s taboo in our society it’s uncalled for. They very word brings about this feeling of hurt, and shame. I’m not sure when we gave that word the power it has now but it’s used a lot to describe not only a persons appearance but their actions, behaviours, and thoughts. I’m also not trying to own the word or make it my shield. But the word does fit and it’s fascinating to me.

I’m freely able to admit that I’m a hypocrite (another not so nice word), I view myself as ugly but I don’t see that in others. We as a society deem that a person who is attractive is most likely going to be successful and those who are not find themselves at a disadvantage. In a Facebook singles group I’m in just about everyone talks about how being attractive is that first impression that is needed before more tends to happen. The thing is I don’t disagree, there are some guys in that group that when I first see them I admit that they don’t do anything for me. Hence me labelling myself a big ol’ hypocrite.

I struggle with that inner voice, I try to find a balance whereby I don’t judge a person simply by how they look and not settling. But also not wanting to be judged for how I look.

often times we hear “appearances can be deceiving” on the flip side “beauty is in the eye of the beholder” so many sayings and quips suggesting a complex relationship with looks. Even with food it’s often told “we eat with our eyes”and just in the last year Zehra (owned by Loblaws) became selling a line of “ugly” veggies, they sell them way cheaper simply because if they are put out alongside the rest of them they don’t get picked simply because they are “ugly”. I’m not ok with the label they gave but I buy them all the time.

I’m a great friend, sister, daughter, I will always love and support those around me. But my love and actions won’t change how I view myself, I am ugly.