Tag Archives: Arthritis

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.


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.


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.

All of the Possibilities

In my last blog I said I was moving Friday and that was at the beginning of November.

We did move to a new building with an elevator, which is a relief for me, I no longer have to walk up three flights of stairs.

I’m not on anti-biotics anymore, I’m still changing my dressing once a day on my ankle, a third of my wounds are scabbed over. I’m in classes now which we are sitting down all day 8AM-4PM, which is why I’m guessing they seem to be healing faster now that I’m not on my feet all day.

I seen doctor Embel, and I am going to see him again on the 19th this month, he said I won’t need a skin graft for my wounds, for those who don’t know a skin graft is taking a thin layer of skin from a different area of the leg or thigh and placing it over the wound, basically sewing the skin to the wound and letting it heal. I was concerned about that as Doctor Robinson kept saying I would need one.

I’m thankful he doesn’t think it’s that bad, but it also means it’ll take longer to heal.
I seen Doctor Robinson on the 21st of November, he say’s it’s smaller and it does look smaller, but again, it’s taking a longer time even with being off my medication for my Arthritis.

I decided it’s best if I take my co-op off and try to find a secretary or assistant job for January- May and move it to late August/Early September. I may graduate late for moving it but I feel I need to heal.

I also think if it gets around in the culinary world that I can’t do my job properly because of this, no one will hire me even when I fully recover, especially where I live, we are constantly told to behave yourself and work hard and fast because the way how little or how much you work are gets around to other chefs.

My boyfriend was offered a job out of province, which means he would be gone a lot but making way more money than he is now, which considering the circumstance of trying to find a desk job before January since I’m not going to co-op means I won’t have an income for those 4 months if I can’t find one. Trust me I always find something.

I remember a few years ago he was working out of province in Fort McMurray, he was gone for two weeks at a time and back for two, that went on for 3 months then he got a job in the city, this new job means he’ll be back on the weekends.

I wouldn’t say everything is falling into place, but everything doesn’t seem so grim all the time anymore, not to me. I still have to stay away from tomato based products as it makes my arthritis worse, but I have a new apartment, a possibility of moving my co-op to heal.

I’m feeling like it’s going to be okay.

“Pain demands to be felt”

Silver linings and over dramatics

I come from a family that has arthritis run in our blood line, is was also mentioned when I had taken a native studies class that is was common to find bones that has traces of arthritis/markers left on the aboriginal remains.

The past 5 months have been pure pain and agony, switching medications to control my arthritis, the infection in my ankle, being taken off medicine that’s supposed to control my arthritis in exchange for antibiotics to rid the infection from my ankle since if I were to be put on medication for my arthritis it would stop the healing process, fester and turn into blood poisoning. Which to my doctor he’s scared of happening to me, case in point, I’ve been seeing him once a week since September and it is now October. I’m still antibiotics, while it’s slowly healing, my arthritis isn’t under control.

Since September I’ve been taking a very low dose of prednisone with naproxen- a pain killer, it’s no way near enough for my moderate to chronic diagnoses, I’m stiff every morning, I wear my knee brace on my right knee, I need my cane in the morning and by the end of the day I have to crawl up three flights of stairs to my apartment and use crutches when I make it home.

On my worse day’s when I make it up these three flights of stairs I’m sweaty and in tears, leaning my head against the hallway wall when I make it in, I have to tell myself to breathe, I made it, I made it up the stairs.

I still manage to slap a smile on my face when I don’t want too, I still smile when I feel myself breaking on the inside questioning did I choose the right profession? Are my chefs right to question if I should be here?

I keep being asked if I can take a sabbatical from school and go back in the next term, so these wounds can heal since, being on my feet all day hinders the healing process quiet a bit.

I’ve come so far and I’m almost done, I can’t see myself quitting now, not when I’m so close.

I could always ask for my old research job back, which is a quiet nice desk job with good people, but it’s nothing like cooking. I also don’t know if they would need a research assistant.

It’s not just my chefs asking me if I’m okay and if I should continue on like this, now it’s my doctors asking me to take time off school.

I’m back to being 8 years old, realizing again I’m having something I love being taken away from me because my body is too weak to protect it’s self.

I’ve missed 4 day’s of school, if I miss more than 5, I have to repeat the course..

I’m trying to look on the bright side, I’m moving to a more accessible apartment building on Friday, it has an elevator, and a balcony….No more stairs.

This new doctor I’ve seen today, as I mentioned in my last post, to seeing a new doctor called Doctor Embil, he told me today, I have no infection anymore, the wounds need time to heal, don’t take anything for my arthritis other than what was given to me from Doctor Robinson, use this cream on the dry scaly skin, but I have to use gloves while putting it on, and only use the tiniest amount, dress it, use a stocking they gave me and change it once a day.

I can also stop taking antibiotics.. I’m going to finish the rest of this proscription just in case.

At least I have this tiny bit of good news.

“Pain demands to be Felt”

Living life with a double edged sword- one day at a time

I went to the doctor yesterday, to see my specialist for my arthritis and tell him to shove it because the simponi isn’t working.

I waited in a room to see my doctor and was asked questions by another doctor about my medicine, then he checked my movements. Before that I told him I didn’t want to be examined considering he kept blowing his nose and kept asking me the same questions I just answered and he had written down the answers, he said it’s just “allergies”.

I don’t believe he’s a good doctor considering when he gave me an injection years ago he kept moving the needle behind my knee cap and ignored my saying stop until my mom basically got up and told him to stop.

anyways this doctor said to me when I told him the medicine I’ve been on like the prednisone.

“Is that why your face is puffy?” I almost let a ‘fuck you’ fly out of my mouth and managed to restrain myself, though I wish I didn’t so next time they’d get a nurse to talk to me. As you can tell I don’t forgive.. at least not easily.

Anyways, he tried telling me it’s only been three months (I said no, it’s been four), well it needs more time.

I said no I’m not giving it more time, I did that with a drug called methotrexate and it did nothing but make me sick for two years, I’m not doing that again.

He then went to get my real doctor, and when my real doctor came, he said, looks like the simponi isn’t working, it’s gone, let’s try something else, you have three choices. Choice one is once a month but it’s intravenous, so you would be hooked up to a machine for an hour once a month, what do you think about that?

I said I go on Co-op in January, I can’t be in the hospital once a month, I have to work everyday, can’t do it.

He said okay so, the second choice is a drug called Humeria, you take it every other week, it’s not like simponi, it doesn’t go after the TNF in the arthritis it reacts differently, or we can go back to enbrel and give it another shot since you’ve been off it a few months, but I don’t believe it’ll make your eye or skin better considering that you’ve been taking it for years and it’s now slowly stopped doing it’s job.

I said okay, well lets try the Humeria, and if that doesn’t work back to the enbrel, when can I start to take it?

He said” when was the last time you took the simponi?

I said The 12th, soo three days ago

He said you can take it today if you like.

Then that other doctor who had been sitting there the entire time which I think should’ve just fucked off said, her right foot still has an open wound.

My doctor said Let me see it, did you take antibiotics for it? As he knelled down to take off my sock and remove the bandages

I said No thanks, and yes I’ve taken antibiotics for it, I have an appointment with infectious diseases/diabetic foot person thing in October.

He looked at my wound he said, that’s still infected, was it healing when you took the medicine?

I said Yes, it was then it went back to this.

He said I can’t put you on the Humeria while it’s like this it’s too risky, when is your appointment?

I said At the end of October, the 28th- it’s fine.

He said No it’s not, that’s infected, Shaylene it can get into your blood stream make it’s way through your system and kill you.

I thought… Is that so bad?

Then he said why didn’t you tell us? or go to your general practitioner to get it fixed, is that where you got the antibiotics the first time?

I said no, I don’t know why I would tell you, I went to a walk-in clinic who gave me them then set up the appointment for October.

He said, We’re specialist too you know, it relates to your arthritis, we could fix it, When is the appointment again?

I said the 28th, of October

He said That’s too far, we need to take care of this now, I’m going to swab it and get it tested, we might have to biopsy it if the test doesn’t come back conclusive.

I said Swab only don’t biopsy it, I know what that means, your not taking a chunk of flesh from of leg.

He said Okay but In the mean time I’m giving you two antibiotics, you’re going to shoppers and you are taking this today, as soon as you leave!.

I never had my doctor so miffed and dad rage at me before. Then he had a nurse “dress” my ankle, after which I got a bag full of gauze and ointment to treat the area. The first doctor kept coming in and out, I said you don’t have to be here, close the door, no one else has to see this! Then he finally left.

So, now I’m taking two antibiotics to rid the infection, I have another appointment with him next Friday- the 26th at 11am so he can check how it’s doing.

It’s day two of these and I’m tired, I’ve been tired all day.

For the past month my right elbow has been hurting on and off, and would get to the point where I couldn’t straighten it out. I think my arthritis spread to it. So I’ve been crying almost everyday because I’m not sure if it is or not, but with my luck it has it.

My eye’s get red time to time and my left eye hasn’t gotten better, my medicine doesn’t work, the skin around my nails are peeling, cracking and bleeding, I can barely make it through the day at school because of the pain, my infection has gotten so bad it’s disgusting.

All in the past few months.

I had to make sure these antibiotics don’t interfere with my birth control, because that’s what else I need, a miscarriage.

I’m falling apart, and I’m so angry. I have no physical outlet, I want to hit something.

But it would make my fingers bleed, or make my arthritis worse.

I’ve been living life with a double edged sword.

And I keep getting cut.

I told my boyfriend about my morbid thought when talking to my doctor. He looked at me and said Yes, it would be bad because I care.

I told him not to mind me crying from time to time, I’m grieving things I can’t control.

He said he understands and I hope he does.

It’s been a very long year, I’m falling apart, and I’m tired..

One day at a time..

“Pain demands to be felt”