Category Archives: Uncategorized

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.

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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

Opportunities and Realizations

I’m not used to putting myself on display, sure- I’m a aspiring chef, and singer, and I put myself on display in those ways.

But this blog is me wearing my heart on my sleeve and asking you to understand, not to criticize or ask for advice on how to run my life but just to understand where I feel I have felt wronged all my life.

My new medicine has yet to kick in, my doctor is hell bent on keeping me on it until the next time I take it, which will be the 12th of August, I have to take it the same day every month.
To cope with the massive flare ups my doctor prescribed me Prednisone, which I take 4, for one week, and decrease by one every week until they’re gone.

I’m on week two I believe, and it has helped a lot, considering the side effects that it can have if you take it for a long stretches of time, such as a few months long. The naproxen I have been taking since I was 7 wasn’t strong enough to ease the pain but the predisone helped.

It’s not recommended I drink caffeine while on this drug but, HA that’s not gonna happen.
I can live without alcohol but my morning cup of coffee, yeah, no way in hell am I letting that go.

I have one more month for this medicine to take effect and when it doesn’t, I get to tell my doctor to shove it. My doctor asked when I have a week off so we can try the radiation surgery on my knee again, I just laughed and said when I’m dead. I’m in the culinary world, you have to book it off months in advance even for 3 days off.

Especially with school coming up and the school’s policy with no one can miss more than 5 days or you’re kicked out is not something I can do.

Trust me, I missed 3 days last school semester and had the educational director say to me in a meeting if I miss two more days I get kicked out, doesn’t matter if I have a disability or not, it’s the schools policy.

Which to me, kind of sounds like a law suit waiting to happen, but that’s just my opinion.

I never thought of writing a blog about my illness before, my boyfriend had suggested a food blog after I had written my first few posts, and I’m thinking about it, but this is occupying my time and mental well being just fine.

I was just looking for someone like me, that I can maybe talk to and came across a hand full of people that have the same illness and where writing about it from different perspectives, how it started, when they were diagnosed and coping with it.

Then I realized I have a lot to say about it, most have lived with it a few years, but if you’re unlucky enough, you live with it since you were just a child.

With this disease comes more insecurities, surgery’s, and mental break downs than anyone realizes.

Even though I am having one of the roughest summer I have had in years, I’ll get through it.

 

“Pain Demands to be Felt”

Coping mechanism & Simponi

My sister had told me writing was a coping mechanism.

I stared at her and said well yeah.

I have never felt comfortable expressing my feelings on the topic of my health, I always thought feeling sad and disappointed was a form of weakness and where I come from, that’s not something you express or you’re considered as I said weak and a drama queen because toughen up.

In the last two months I have had two massive flare ups, one being right now, that are so painful I can barely sleep through the night.

In those two months I was switched to a new drug called “Simponi”, the first time I had taken it, I thought it was my new holy grail of medicine, it was the first time I had felt “normal” in my life and I was grateful. Then two weeks later I had my first massive flare up since I was 15, when I started this blog. I am now having my second and this new drug is not worth it. After the first time, it is no longer working.

I was switched from my previous drug Enbrel to my new one Simponi because Enbrel wasn’t doing enough for my eyes and skin, as my vision was becoming blurry and my eye red, also my skin and nails becoming dry, scaly and ridged.

I contacted my doctor yesterday about how this new drug isn’t doing what it was supposed too and I thought I can give it one more month, and I can’t.

These flare ups are interfering with my work and my personal life, if I don’t have 400 hours by August 25, I fail my co-op and with a month left I need my hours.

I can live with the red eye and ugly skin, I can’t live with this constant pain, it nearly killed me the first time. I don’t think I have enough strength to do it again.

My doctor has yet to get back to me, if it’s not by noon, I will be going there in person, and I promise it won’t be a friendly visit.

I felt switching to a new drug was gambling with my health because of how active I am, and I was right.

 

“Pain demands to be felt”

 

The fault in our stars

I know this book turned movie had just come out a few weeks ago, and I have to say..

I loved it, there were times I had to stop myself from doing that ugly hyperventilating type crying just because I could relate to the core of me, what was being said or portrayed.

I heard reviews from friends or critics on how it wasn’t very climatic, and boring.

I hear you, and I disagree.

I feel these people that have said the book or the movie are not very good because there is no car chases, or chasing someone to the airport just to say “don’t go I love you”, have never lived with a disease and don’t fully understand that anguish, hope, and disappointment.

These people live normally, while the rest of us live with a disease and sometimes feel unworthy of love because we are not like you, and what kind of person would stay through it all.

Let me explain, I was told in high school by a teacher, that if you have any kind of disease, any at all, not to get married, or have kids, not to even have a significant other because you are going to be a emotional and financial burden on that person, and they didn’t ask for that responsibility.

I was in grade 12 when that was said to the whole class, and I did think that years before, but I never said it out loud and how harsh it was.

You’ve also never heard of a love story where one or both main characters are sick right from the beginning because no one wants to think they can die and want their story to be healthy, and free.

Sometimes when you have a disability you don’t feel worthy of love, and this book/movie had said what I feel.

Screw you, I deserve to be happy and be loved in return despite it all.

That teacher was wrong, that teacher lives in this perfect bubble where no one gets sick.

I love this book/movie because it’s life, it’s what I’ve felt, even though I’m not dying, I’ve felt it.

It’s unfair, ugly, sarcastic, loving, happy and sometimes down right painful to live like that.

I understood it, most people don’t because like I’ve said, you didn’t live like that or even close to it so you can’t fully empathize with how it was suppose to make you feel.

And that’s okay.

 

“Pain demands to be felt”

It costs how much?

It’s one problem having this disease, it’s another problem trying to care for it.

I read from other blogs on how they come into problems with health insurance, trying to afford the remaining cost of their medicine, or maybe find a cheaper but still effective brand of medicine.

I didn’t look at how much my medicine cost, because I had always taken medication, it was just something I would take to help and never crossed my mind.

As an aboriginal person, if my medicine is on the approved list of Indian affairs, it is just billed to them.

So, looking at my list of medicine I take for one week is;

Iron,14 pills, two a day- $12.81
Folic Acid, half pill, 3 times a week- $10.71
Naproxen, one pill, once a day, or as needed- 17.05

Total $40.56… A WEEK.

In addition to these weekly pills, I also need to take my other medicine, once a month, called Simponi, which for one syringe costs $1602.25

I can’t believe how much it’s costs just to keep me going and prevent my arthritis from becoming worse.

My previous medicine before Simponi was Enbrel, for 4 syringe, once a week, which cost $3000.

In no way could I afford any of these pre-filled syringes.
I’m currently working full time, but I still have bills to pay, and I’m returning to school in the fall.

I applaud the people who find a way to take care of their financial burden, that don’t have the security with their medication as I do.

With all of these medications, the side effects can pop up.

Dizziness, fatigue, rash, diarrhea, shortness of breath, constipation.

All of these side effects sometimes just from one drug, but you take the good with the inconvenient. Dizziness and fatigue are usually what I experience from these medications.

If I were to take Simponi more than once a month, I could over dose as the sleeve of side effects says which I want to say “duh” too much of anything is bad for you, if it says once a month I assume it’s pretty powerful stuff.

Along with all this medication, comes the shoes that are designed for people with arthritis.

I’m not suppose to wear what “normal” people wear, when it comes to shoes, but spending $160 on a pair of shoes every two years to me, doesn’t seem worth it, even though my doctor says it makes all the difference.

Recently I had bought a knee brace (with my own money mind you) for work or when I workout, depending on the type, Velcro straps to tighten, one with metal hinges, can be from $40-100, mine cost me $40. Which isn’t bad but I know I’m going to probably need a new one next year with all the walking and standing that’s needed for work.

My cane didn’t cost me anything as my granny had given me hers before she passed away.

With all these odds and ends to help ease or prevent the discomfort, it’s pretty damn costly.

You think it’s only the disease you need to deal with, but it’s also everything else that comes with it.

Thank you for reading, I have all I needed to say for today.

Please share your thoughts and comments.

“Pain demands to be felt”