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”

Advertisements

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”

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”