Home life

Since my last post, I have moved into my parents place. We couldn’t afford rent and internet let alone two places to live in. My partner lives and works in another area for his job and we only see each other for two days every two weeks for the weekend, which wasn’t really seeing each other since he spent most of his time playing online games with his friend who lives in a different province. Apparently, he needs his attention more than he needs mine. Yes, I did bring it up and no it didn’t do anything but result in him shrugging it off and saying it was only for a few hours even though we barely see each other. That was nice to know where I stood, beneath someone I don’t know.

Long story short, I’m living with my mom. Which it wasn’t easy to ask to live with her. I swallowed my pride and asked and was met with ‘Why? That’s your dads room and it’s also meant for when your sister breaks up with her boyfriend and needs somewhere to live’ and ‘How long do you think you’re going to stay here? I want to do other things with my life you know!’ Meaning she doesn’t want me here, which I don’t want to be but housing takes months to find…

Believe me I don’t want to be here, it reminded me why I wanted to leave in the first place. Constantly listening to my parents yell at each other over stupid insignificant things.

The healing process for my wounds came to a halt, maybe because of my now poor diet, afraid to eat anything in the place or I’ll end up hearing ‘why did you eat all of the fucking fruit? oh my god why do you eat so much?!’ from my mom, so I eat the bare minimum and drink lots of water to keep myself as full as I can and it doesn’t help all the stress I have from feeling like I’m always walking on egg shells or be yelled at…

Getting to my appointments is becoming more difficult, it falls into ‘I’m busy, I have other things going on too’ so asking any family member to take me to them is next to impossible or feels like pulling teeth and/or they want gas money.

Like tomorrow I have surgery for my left eye again to clean out all the debris’ build up caused by old inflammation. Yes, they knew for a month. No, no one changed anything to take me…

I don’t have any money to get there by cab..  So, I’ll probably miss it

That’s what has been up with me lately, not much else just a string of disappointments.

Surgery update!

Where to begin..

Let’s start with my cataract surgery for my left eye. That was back in August, on the 18th to be exact.

Everything went well, it wasn’t painful like my right eye was.

It was a tad uncomfortable during but not after. It was the first time I’ve been able to see out of it for a year!

I’m so happy I can see out of both eyes, however, I do have UVitis which is causing inflammation  on the inside so while I can see quiet well, everything is STILL fuzzy.

I’ve seen my rheumatologist last week and I’m going to be switched to Humera since it helps treat my eye condition.

Here’s hoping!

Also, two weeks ago I seen a retina specialist-on the request of my primary eye doctor. He was worried about the immflamation and flashes of light I was seeing.

The retina specialist injected BOTH eyes, and well… Now I know what having acid being poured on your eyes feels like.

Holy shit for a solid ten minutes it burned.

I said “It burns!”

He said “Oh yeah”

I’m sitting there like, well it would’ve been nice to know before hand and that was WITH freezing.

I expected a lot from that adventure and when it didn’t immediately happen-by immediately I mean a week- I told him “This did nothing” That’s my polite voice, what I was really thinking was “This did jack shit”

He said “It can take up to three month for it’s full effect”

I said “What?!”

He turned around to me nodding saying “yeah”

I’m sitting there like, that would’ve been nice to know too. I have to go back in a month and see him to check my eyes and see if HE wants to cut my left eye open to ‘clean’ it.

What does ‘clean it’ mean? He said it’s like cataract surgery but it’s not cause he’s “just” clean out gunk.

At this point I’m like, just do it DO IT, when it comes to surgery. The only thing I hate is that damn IV in my hand-ugh.

I won’t know until I see him again, but he’s leaning towards it and my primary doctor is super chill about letting him do it, so it’s probably going to happen.

On another note, the nasty wounds on my leg are almost closed- WOO! and I’m close to only using my cane, I’m a step closer to walking by myself.

I exercise as much as I can without hurting myself or my eyes since those needles to the eyes count as surgery.

If you had eye surgery you know you get a dull ache when you’re close to over doing it, yeah, not fun.

My last point today is, does anyone else’s doctors call them a girl? I noticed all of my doctors called me a girl and not young lady or something. It doesn’t ‘annoy’ me, I’m just fascinated by it… You realize I’m 26, right? …. >.>… and in the next month I’m going to be donating my long locks to cancer care and I will be rocking that ‘mom’ hair and looking like a cabbage patch kid with my round face.

If you don’t know what a cabbage patch kid is, you’re too young for me bro :p

Until next time.

Pain demands to be felt.

 

Where have you been?

You’re probably wondering where have you been?

To be honest, I was slowly losing my eye sight to cataracts. Which was caused by the eye drops meant to help inflammation in my eyes since my RA wasn’t being controlled by medication because of the wound on my leg.

Which, yes, it is still there only now it’s actually healing.

Let me break it down for you.

January of 2016

Your wound isn’t improving so let’s try putting you back on your medicine again also the prednisone you’re on is making you gain weight and that’s not good.

While I was feeling fanstastic due to my medication, my eyes continued to become worse. I mean I had to register for CNIB-the Canadian natonal institute for the blind.

April of 2016

Right eye surgery- removal of cataracts and filter made from my own eye tissue due to constant rise of pressure inside the eye. My eye will now be able to drain it’s self naturally, if pressure rises.

For four weeks after surgery,  I was on three different drops, four times a day. The pain right after surgey? dear god I thought my eye was going to frip apart since he injected one anti inflammatory and one antibitotic, it didn’t go away for close to five hours after and the only thing the nurses would give me is a T3… Do you know how long I’ve been taking pain killers for? Since I was six years old, you need to give me something hard enough to tranq a horse, like damn.

For four days after it was grating to blink because of the stitches in my eye and I had to wear an eye patch to bed for a little over a month.

I was so scared it would become infected I used a whole paper towel roll just to clean the gunk from my eye for a week. I also had to be careful washing my hair, absolutely no shamppo in your eyes- BE CAREFUL.

Needless to say I was in a state of paranoia when washing my hair or showering in general.

My surgeon was disappointed my vision didn’t return to it’s normal state it was in before which was 20/20 vision.

I on the other hand was over the fucking moon happy. I’m able to see out my right eye since August of 2015!

If you never been temporarily blind, the immense happiness you feel to be able to see? It’s indescribable, the next day after my surgery, I opened my eye and was able to see color and shapes, needless to say I cried. It wasn’t a beautiful cry it was an ugly Kim Kardasian cry, snot and all.

I phoned my mom and told her ‘I can see’ which ended up in a tear phone call.

It’s been two months since my surgey and I can still see color and definite shapes. My depth perception sucks cause.. Well one good eye and I’m waiting for my other eye to be done in late August.

My surgeons nurse tried scheduling it for the 11th of August which is my birthday and I smiled. She asked my what was happening that day and I said ‘oh, only my birthday’- which I didn’t care the surgery would have been on my birthday cause no one is ever free on a weekday or has money to go eat, regardless of how close I am to friends it never works out so I gave up celebrating when I was a teenager.

It would’ve made one hell of a present happy birthday a new left eye!

Howver, when I told her she changed it- boo, give me my eye sooner.

Now it’s the 18th. *heavy sigh*

My vision is at I would say 50-60 percent even after recovery, fucking arthritis, am I right?

Still, it was more than what I was seeing before which was nothing but shadows and light with no shapes or knowing the difference between green or blue or even grey and black. It was one giant hazy blur.

I’m still considered legally blind though I can see just not perfectly. I’m in the low vision category.

You know what that means!

Another dream I need to let go of.

Returning to culinary and being a chef. Two years of my life down the drain and for what? A certificate I can’t use?

I know, you’re probably thinking but you can see look on the bright side!

I am, don’t get me wrong, I am.

I wake up every morning thankful I can actually see my alarm clock or my reflection. It doesn’t mean I can’t be royally pissed off for wasting my time because my body wanted to fuck it’s self over by becoming more aggressive with the RA and attack my sight.

I’m up in the air as of right now with a career I can actually do and love. I’ve been writing short stories but even then what if it gets worse again and my retina decides it doesn’t feel like staying attached. Then it’s total darkness and joining the two percent who are by true definition blind.

I’m not being pessimistic just realistic about my disease. I hate when someone tries blowing smoke up my ass about “getting better”, there’s nothing worse than false hope.

Speaking of ‘getting better’, the wound on my leg is now half the size it was in January. Woo!

My leg is finally healing now that I’m back on my medicine, right eye is fixed now only the left.

As for a career? I’m sure I’ll find something.

Sighing off until next time readers

In my world..so far.

Do you ever want to just bang your head against a wall? literally just bang it against the wall.

It’s been a extremely frustrating 5 months. I can’t go to school since I can’t take anything other than a pain reliever and if I go back, my doctor guarantees my wound won’t be healed even by September because culinary school is so physically demanding it just wouldn’t heal because of all the stress it would cause my legs.

Leaving school to take care of my fucking flimsy body was the most difficult decision I had to make… it literally hurt not to go back, I ended up giving myself a panic attack a day after withdrawing from school. What was I going to do with my life? what am I going to do with myself? I’m alone everyday, I have nothing new to learn… Then my panic attack happened and I had to close my eyes take long breaths and count to ten in between each sob.
It’s been five long months and my wound is still not closed, home care however has become less painful when my bandages are changed, it’s not only mildly uncomfortable and it doesn’t bleed which is nice.

They’re concerned I have diabetes only because it runs in my family even though they have not much else to go on they’re still concerned.

I’m unsure if they’re aware I’ve always been a slow healer because of the medication I’ve taken, , even when I’ve stopped taking it, it still takes months for it to leave the system. So that is also a factor for why it’s taking so long. Though they have told me my wound has gotten smaller.

To try and boost the healing time, I’ve been advised to start a high protein and vitamin C diet, which is fine with me, I don’t have a preference on what I eat lately.

I had “laser eye surgery” three weeks ago, since my arthritis is now free to run rampant, now that I don’t take anything to control the fucker, my eye’s have become inflamed which means my vision is blurry.
My left eye is worse than my right. The left I can barely make out shapes with, yes, I can still see colors and light but not much else with it.
My right eye, which is still affected by my arthritis, is ever so slightly affected with blurry vision, I can see what everything is, it’s just ever so slightly affected, affected nonetheless. I take one drop of prednisolone every hour in each eye.

My eye doctor said it looks a lot better, I had to keep my sarcasm to myself when he made his assessment when I went back for my follow up.

Yeah, it’s so much better I can see all the colors of the wind..

Though he did tell me it’s at most what he can do for me, and my eyes won’t get any better until I’m back on medication to control my arthritis.
By the way, the eye surgery, yeah not fun, it’s fucking painful, he froze my eyes still fucking painful, can’t imagine not having my eyes frozen, it felt like I was having my eye stabbed repeatedly with a hot needle…ugh.. just..ugh.
I then had light sensitivity for 2 weeks and periodically a shooting pain.

I’m fine now, still it had to be done, essentially going blind is terrifying and I’d take the laser surgery any time to prevent that.

By trying to take up my time, I’ve been learning Japanese and Korean, why?
I’ve been watching a lot of anime and I’m sick of reading the subs, and I’ve been listening to a lot of k-pop.

My reasoning, I don’t understand any of this, guess I’ll learn their language.

I’m only on simple phrases, I don’t even know if I’m saying everything properly, I should really record myself and compare it to what is said..

But that is what has been going on with me the last few weeks.

Pain demands to be felt

Healing process and mind set

it’s been a while since my last blog, but I have been “busy”… not really just binge watching netflix and trying to find an office job.

Anywho.

I want to address my lack of sensitivity when it comes to going through personal issues, such as with my sister, she is going through a hard time lately with her doctor.

Ever since I was small I’ve learned to always say ‘BRING IT ON!’ when it came to bad or uncertain news from doctors since it’s always been one let down to another, kind of a constant warrior mind set. Yeah, I’ll take you on attitude.

However, being this way for years has made me less sensitive to other peoples issues because I expect my family and friends to have that same mind set.

I didn’t raise my voice, or say anything insensitive. I didn’t say anything since it had been taken back by my sisters reaction.

It was as if I froze to such a strong emotion. So, in turn I stood next to her and put my hand on her shoulder, letting her know I’m here.

When someone in the family dies, I know what to expect, when my family has uncertain news and cries because of the uncertainty. I don’t know what to do.

I’ve trained myself to expect the worst and be okay with it, such as I don’t know if I can get pregnant with all the medicine I’ve taken since I was six. I don’t know what that did to me but I’m okay with it because I can adopt.

Other people on the other hand.. not so much.

I need to keep in mind not everyone can have that “get up and keep going” spirit.

On a lighter note, I had gone to Kenora for two weeks just to see what it looks like and be with my boyfriend. It was beautiful, even though that place he is staying at while going to work has pigeons in the ceiling, which was completely annoying, the walls would also make noise by creaking and the old pipes bubbling to where it would sound like someone was walking around or trying to get in the window.

I came back to the city today, I also had an appointment with my doctor Embel, he scared me at first.

He asked how I was, took measurments of the wounds, look at my chart, looked back at my leg and back at the chart. I thought “oh god it’s infected and not healing isn’t it?!” But he said “It’s smaller, by half, and it’s not a deep wound anymore, it’s at the surface. That’s amazing!” I was relieved he sees the same thing I see. I had told him the home care nurse had said she thought it was infected because it has a smell to it, but he said “It’s not infected, if it was, it would be red, have puss and leak way more and be sensitive, but I’ll write you a prescription, take it for a week and if it doesn’t look a lot better then stop taking it because it’s not infected, don’t throw away the pills though keep it just in case.”

So I’m on antibiotics again because the nurses are convinced it is infected when their are no major signs of infection and it’s only a smell…

Your wounds/foot would smell too if you can’t wash it on a regular basis.

I’m down to seeing the home care nurse to once a week now which is nice, and instead of using that pad that turns into a gel when wet, I now have a pad that sticks to the good skin around the wound but not actually sticks to the wound it’s self.

Doctor Embel and I took picture of it because we are both impressed it has healed so much over the past month.
I’m not going to post those pictures yet, I want to wait for my next appointment at the beginning of March.

I’m also pretty sure no one is aching to see an open wound.

Pain Demands to be Felt

Tis but a flesh wound

I realize some people don’t like Ariana Grande because she’s sounds like a small mumbling child but I’m loving this song.

I’ve been keeping busy, my ankle has been it’s bandage since seeing Doctor Embel, changed four times of course.

It’s starting to feel like a flexible cast, I either can’t or can barely put on my right shoe since there is so much bandage.

Once bandaged by my sister Mallory, I did my own dressing the wound, she covered it with the co-band. The third time was by a temp male nurse- ouch. It made me question if men should even be nurses since instead of being gentle when removing the bandages against my wound he ripped them off and caused them to bleed for a good 15 minutes.

Resisted the urge to kick him in the face, you have no idea how bad that hurt and continued to have it’s own pulsing heart beat for a good 3 hours and hurt to move- let alone to take a step.

Forth time was my actual assigned nurse-Lynn, she took her time and used saline to soak the bandages and removed them, it still hurt but at least it wasn’t as bad as when the male nurse took them off and they didn’t bleed. She said it’ll get easier with time, it just sucks now because it’s still open and ‘weeps’ or leaks. Lynn said once it stops leaking completely then we might be able to use a actual gel on the wound but for now we are using the pad that turns into a gel because it’s soaking up the fluid from it.

I asked why It was being only changed twice a week and not every other day at least, and she said it’s because doctors are theorizing you should only change it a few times a week or even once a week since removing bandages can cause the newly formed skin to be ripped off with the bandage then you are back to square one.

It makes sense, but at the same time I really want to wash my leg instead of covering it with a plastic bag so the bandages don’t get wet.

Lynn asked me how long I’ve been with this, and I said it was a long process to get to this point, being taken off my medication for my arthritis because it was stopping it from healing and making the infection worse, then given anti-biotic for the infection, then the saline soaked bandages to help clear the infection, and then the double compressed bandage I have now…. it’s been a long painful and tiring process.

She seemed sympathetic to my situation, she said it must hurt to be off my arthritis medication, I said some day’s are better than others but yes it does.

With what little medicine I am given for the pain, it’s hilarious.
Naproxen 500mg, Prednisone 10mg both medicine per day.

Doesn’t help with the stiffness or flare ups but I can move at least even if there is minor discomfort.
Again when I say something is minor for me, for you it would be a big problem and maybe ruin your day.
I built up a tolerance for pain over the years.

On the bright side, now that I’m on break I lost a bit of weight, which is pretty funny, my mom said to me “You look like you lost weight, your face is thinner and your arms are smaller since you’ve been on break.” I said” I think so, I only really make myself toast and a bit of cheese when I’m hungry and when Henning’s not here, or have one big meal and a snack later on”

I also stopped putting sugar in my coffee which I always had sugar in it when I was going to school, and if you know me I drink a hell of a lot of coffee, so that was a hell of a lot of sugar.

I’m not starving myself by all means, when I’m hungry I eat, but I’m not moving as much lately so I’m not burning any calories.

I do miss my knives, which to you that might be weird but I haven’t really cooked or prepared anything in the last two weeks, I made the turkey, gravy and croquettes for Christmas dinner but I didn’t really need my knives for that.

I am a Culinary student after all. I do wish I got a knife rack for Christmas but that shit’s expensive and we had a 30$ cap for presents- for the adults I mean. For my nieces they got what they wanted, my little brats, aww.

That’s what has been going on with me for the last few days.

Pain demands to be Felt.

December

I have been on Christmas break since Wednesday, December 17. Technically I’m not officially on Christmas break until today, but our chef had prior commitments.

Which is completely fine with me, I went to see doctor Embel for my open wounds on my right ankle, he said it cleaned up nicely, it’s not infected and it’s healing up fast, but not fast enough. He switched me from using regular saline soaked gauze against the open wound then covered with a thick dry pad and wrapped several times with a roll gauze, to a double compressed bandage.

This bandage is fucking tight, he had a nurse dress my ankle, she placed a type of gauze on my wound, that when the gauze becomes ‘wet’ from the wound it turns into a gel, basically temporary sealing the wound, then she wrapped my foot with a cloth bandage up to just under my knee, and layered it on top with a tenser.

Doctor Embel said “You need to wear this, and keep your foot elevated on a pillow if you want this to be fully healed within three months before school, if you don’t it can still be open when you go for your co-op in September”

Oh, that’s one thing I forgot to mention, I got my school to move my co-op to September, and I can return in May with my class, which I couldn’t believe happened. I’m so fucking lucky.

They let me stay with my class, you have no idea how much of a relief that was. I consider them my support system. They keep me going, telling me to take it easy or encouraging me to keep going when I need it. My friends mean a lot to me, so to stay with them gave me determination to get these wounds healed. Even if it means being bored out of my mind sitting on my ass.

Back to what Doctor Embel said, because I’m currently looking for an office job for the four months I’ll be out of school, I’m going to be set up with a Health Care Aid as there’s no way I can apply these bandages to my ankle.

The bandages need to be changes every 2-3 days, then when I become comfortable with the amount of pressure from the bandage it would be changed every 5-6 days.

To me that sounds gross only being able to change it every 5-6 days but he’s the doctor and I will be keeping an eye on it constantly.

That being said, it doesn’t mean I won’t be able to take a shower, it just means the bandage won’t be changed as often, I would be given a layer of waterproof-whatever, so I can have a regular shower.

I have been given a chance to heal, where in the past few months I’ve had to to ignore the pain as much as possible and keep moving.

I don’t remember if I mentioned it but I passed my Regional Cuisine section with a 78%, which is barely passing but at least I passed.

To pass in this school you need a 70% in all courses.

I haven’t written for a few weeks not because of this good news but because of something that has been bothering me and I wanted to figure it out before saying anything.

With all the good news and it being Christmas time, I was really upset and angry, I was coming up with any excuse to fight with my boyfriend or to even throw anything.

I didn’t understand why, then I came home a few day’s into December, it hit me.

I’m upset and angry not because my boyfriend will be working away from home but because of what December represents for me.

For other people it means family get together, vacations, pictures, presents, food, anything that comes with December and Christmas.

For me, it means remembering those closest to me who died in December. My cousin Mikey had died on the 15th, two years ago, he was my best friend. My granny Irma died on the 23rd, she was in the hospital for months, it looked like she was getting better then she suddenly passed away, she’s been gone for 4 years. My aunty who I never met, was murdered on the same day Mikey passed away, she’s been gone for 30 years.

I hate December.

It seems like every few years someone close to my family dies in December, I realize this is just by chance but we lost too much family to over look it.

I have two nieces who absolutely love Christmas and I would never take that magic away from them. I wouldn’t let my bitterness into their childhood. They don’t know what we know or went through, it’s not their fault and they deserve every bit of happiness.

I can barely stand to hear Christmas music, or have my tree up, or buy presents, I just want to make this like every other month and keep it normal.

But I can’t, my boyfriend, my nieces, they deserve happiness and I doubt my loved ones would want me to be this miserable. So I try to stop my urge to argue, and swallow my bitterness.

Not a lot get’s to me or can get an emotional reaction out of me but December can.

…………

On a lighter note, with my spare time and keep my mind off things, I started a youtube series of reviewing ‘Mohawk Girls’ and ‘Blackstone’, which airs on the APTN network. Blackstone has been going since 2011 so I have a lot to catch up on, where as Mohawk Girls just started in November so only a few episodes, but watching, recording then editing takes up a good amount of my time.

Keeping busy to save my sanity I guess.

Pain Demands to be Felt.