Masculinity Vs Toxic Masculinity

Okay, So if you have been on the internet at all this week, you might have heard about Gillette's new Add Campaign.


If you haven't, you will need to watch it to get started: https://youtu.be/koPmuEyP3a0

The point is that Gillette's slogan has always been "A Best a Man Can Get" and they have evolved to "The Best a Man Can Be" And this short Minute and a Half Film shows the harsh reality of why that change was needed coming into 2019

What us as a society considers "okay" has evolved, over centuries. There was a time when we socially excepted slaves & arranged marriages. There was a time when women were not allowed to vote, learn how to read, wear shoes or leave the house with out the company of a man. There are still places in the world where some of these social rules are considered completely normal.

The point of this campaign is to remind us that we need to set a better example for our next generation. As a society, over time we have made steps to make the lives of those around us better and more valuable. Women are voting, working and making decisions for them selves. We still have a long way to go because we can really consider ourselves to have the same rights as men, and I will touch on that a little later.

Those changes didn't come with a polite ask. We had to fight, and say truths people didn't want to hear to have our voices heard. There were wars. People died. All so we could change what was considered "okay" to leave a better world for our next generation.

Now many of those things don't seem un reasonable at all, because we raised a generation that taught young people that no one owns you, you can follow your dreams, you can make a difference.

So tell me, WHY are [some] men taking this idea, as such an attack that they are boycotting Gillette for saying they believe men can be better people. Pardon me, but are you fucking kidding me?

A comment on the Buzzfeed article most of you may have seen or shared makes a really valid point:
“how did we make a society that finds “don’t sexually harass women, don’t let boys or men assault each other, and treat each other with respect” a controversial message?”

That is a great question.

I really don't need to get into the dirty details of why the #MeToo movement is such a big deal. It is very complex, every situation is different but it, to its core is due to the fact that women are still not considered equals.

We still have a male dominant government, deciding what we can and cannot do with our bodies. A man can answer a short list of questions and have a vasectomy with out his wife even knowing about it. Where as a woman who wants to get an abortion, or a hysterectomy is told what she can and cant do with her own body even when its in the bests interests of that body. Not everyone is in suitable shape to produce children. My thoughts? People who don't want kids, shouldn't have them. Period. But she has to wait till she is over 35 and have permission from her husband. When really, if you marry someone who doesn't want kids, and you do, you have the freedom to marry someone else instead. Its something you should talk about before getting married, and no one should have to be bullied into having kids if they don't want to, but women are every single day.

There are so many gaps in equality, I could go on all day. Its not like we haven't been talking about it our whole lives. Most of you get it, we still have steps to make.

This campaign also recognizes there are millions of great men, those who have sisters, daughters, mothers and friends. Those who were raised with manners and respect. Those who honor the women of our world. But it needs to be a standard. We need more of it.

This isn't a target of masculinity, its a target of toxic masculinity. [I tried to find this post someone made on tumblr to give them credit for it, but I cant seem to dig it up but it went something like this]
Its not hard to tell that we are talking about two very different things. For example, Pants, and Exploding Pants are different, thats why one of them has a alarming adjective in front of it and the other is completely non threatening.

Everyone is so worked up about the noun, they aren't paying any attention to the fact that one of them has an adjective and the other doesn't. Adjectives are powerful words. Its the difference between mild and spicy hot sauce. Its the difference between a long shift and a short shift. Its the difference between a small penis and a gigantic one. See what I mean?

So if you were offended by the campaign I think you need to take a real look at your self in the mirror.

For true equality, masculinity and femininity are not bad or scary words on their own, and they never should be. Women with a "masculine" side who like to get muddy and race dirt bikes are, and should be admired. Men with a "feminine" side who are thoughtful, intuitive and have attention to detail are, and should be admired. Equality is acknowledging that lots of social conventions and traits that we have aligned acceptable with one gender, are not gender based qualities at all. It goes both ways. Women can be emotionally un available too. Men can be sensitive too. Men can embrace and be proud of their masculinity or their femininity, and vise versa. Whatever you are, you are right.

Toxic Masculinity is saying that "this toxic behaviour is okay only because I am a man"
Toxic Femininity is saying "this is toxic behaviour okay only because I am a women"

That's the difference. Your gentiles do not give you a free pass to be disrespect those around you. Simple as that. Why it takes an entry this long to explain that concept to people, is exactly what is holding us back as a society.

We can be better, thats the point. Thanks Gillette for having the balls to say it.

Living with Chronic Pain Volume 3: You're Always Going to Be Broke

So if you have been following this series, you will know that I have Rheumatoid Arthritis.

To recap, Rheumatoid Arthritis is an Auto-Immune inflicted condition. It never goes away, it doesn't have a cure, and as I am beginning to learn, you will never have consistent or reliable relief. It targets all the joints in the body, but for my self, my knees, elbows, wrists and hands have been affected so far.

I thought once I had my diagnosis, started treatment and went to physio, I would be back to my old self again in time. But thats not the case. The old version of my self can never again be obtained.This lesson, I learned the hard way.

In short, as a result of my condition, I am now no longer employed.

At the end of this summer, I went from working as a receptionist from one salon, to another. I was very excited to start my new job in a growing business that needed my experience. I loved my new team and they were happy to have me. For the first time in a while, I felt valued as an employee. Something I so desperately needed. I have always been a hard worker, I pour my heart and soul into my job, to my own detriment sometimes.
There were new things to learn compared to my old employment, as they also offer tanning. Keeping the tanning beds clean between each client means this job is more physically demanding than the job I had previously, when I developed my condition. At first, this was fine, and I was adjusting well. I developed great relationships with clients, who told me that I was a "high point of their day" because I was always so cheerful and helpful.
Then as winter set in, tanning got much busier. We also lost some staff due to circumstances that were of no fault of my employer. The cold weather is also notorious for flaring up arthritic symptoms, and Rheumatoid Arthritis is no different. I was having a rough time, I was stressed, sore, and limping. Getting through even a 4 hour shift sometimes was killing me.
After consulting with my doctor, she recommend I reduce my schedule to part time hours so I can take the time to find other, less labour intensive employment. The full time hours while short handed on staff also kept me from making physio therapy appointments, and going in for the blood work I need to do every 4 weeks for my medication. So my doctor wrote me a doctors note, and we would re evaluate in 2 weeks, which was when I was scheduled to see my specialist again anyway.
So I went into work the next day and after discussing this with my supervisor, they already had concerns for me and my health and we decided it would be best if after the remaining scheduled hours were complete, I be casual/on call. Though I was issued an ROE and returned my key and codes, so I am for all intents and purposes, I am no longer employed there.

2 days after my last day was my specialist appointment. My specialist confirmed it was the scope of the work and the time of year that flared up my symptoms. She suspects the flare up will go away on its own after a couple weeks of taking it easy, and not spending too much time in the cold. But we have a back up plan to introduce a complimentary medication if it doesn't. - I have since confirmed that I'm actually allergic to this medication family, so this is no longer an option.

I have also submitted applications to Medical EI and Income Assistance for Persons with Disabilities. These applications are very arduous and take a long time to process. I've heard horror stories of it taking months to get your first payment. I do my best to keep the ball rolling on this so that it arrives before my savings run out. Thankfully, I have almost 2 months of a buffer before things really get hairy. However I also have an anxiety disorder so I panic as if I'm already at the end of that rope.

I am not currently treating my anxiety disorder at this time. I have a prescription for medication, but I am instructed not to start it till I have a spare Epi-Pen. There was a shortage recently when I went to fill that prescription before I lost my insurance, I am not sure if the shortage is over but I know I definitely don't have the money to pay out of pocket for it. The last time I filled one it was $112 and who knows what the rate is for them now. -I have had almost a dozen hospitalizations for anaplylactic reactions to drugs and preservatives (sulphites) so this is a necessary caution

SPEAKING OF EXPENSIVE PRESCRIPTIONS. I had a mental breakdown at the Pharmacy counter today. In front of several strangers. The medication I am on, and will be on for the rest of my life is Over $100 for a 3 month supply. This one medication will cost me over $400 a year. That isn't counting the contraceptive I am mandatory to take with this medication as this drug will cause birth defects should I get pregnant. That's about $120 a year. I also have to take Folic Acid with it to keep it from making me barf my guts out. Since its over the counter its not covered by anything even if I still had insurance, but you can claim it on your taxes. Though Folic Acid is not very expensive, its an expense none the less, its about $50 for the year. I cant put together an exact cost for other misc aids to my conditions, as their use varies on my symptoms. But there is also Tylenol, Epsom Salts, CBD, DMSO and other various supports I use for pain relief. All of which I pay out of pocket for. I don't think its anything less than $200 to keep those aids stocked in my home when I need them, but I'm certain its much more than that. So we are over $1000 a year already for medical expenses, just to manage my symptoms.
Having a medical condition always costs you money, even as a Canadian. I have to go out of town to see my specialist 4-6 times a year. My physiotherapy appointments, even with partial coverage from MSP are still $25 a visit, and I am supposed to go every week. I haven't been going the last 2 months. I was either too sore and didn't have the time when I was working, or I don't have the money because now I'm not working. Now we will have to start all over again because I've re injured my self. The only progress we maintained was in my elbows, my one knee is almost as bad as when we started.

Its been a very emotional few weeks for me. It took me a long time to love my self, and who I was as a person. Having to admit the best version of my self has expired, and learn to love this new me isn't easy. I always had pride in my self because I was dedicated and loyal to my work. I don't like sitting on my ass asking for hand outs, I like to make my own way with my own money that I earned. I have been employed since I was 13 years old. I've never spent more than a GRAND TOTAL of 4 months in the last 18 years with out work. Now I am going on EI. Now I am applying for Income Assistance for the first time in my life. I am trying SO HARD to get extra cash by selling handmade jewelry, my vintage video game collection, and any assets I may not need as much as I need the money. Its devastating. I'm embarrassed, ashamed, and to explain my situation takes a lot of time so people just don't get it. People are very judgmental, and love to tell you how to run your life.

I'm afraid to date. On paper, someone who is un employed for health reasons is a BIG red flag, especially for a guy who has been taken for a ride in the past. I don't want to introduce this version of my self to anyone. I've made my inner circle so tiny so that only the people I trust can actually see whats going on. My family doesn't even really know. I've put up these walls to protect my self from anything that might physically or emotionally harm me, which is everything because I'm so sensitive. I moved away from home when I was 17, and I do still see and talk to my family, but I cant say I'm very close with any of them. I don't get to visit as often as I would like to, so they don't know me anymore, not the real me anyway. Besides, we don't get hand outs in our family. I cant call Mom and Dad whenever I get dealt a bad hand and ask them to stack the deck for me. Its just not how we were raised.

Its a fact that the more alone you are, the more expensive life is in general. I don't split the rent or bills with anyone. My best friends keep me fed, and help me get to my appointments, and I cannot even fathom how I would get by with out them donating their time and seat at the table when its needed.

I'm not really sure what else to say about the subject right now, and I'm sorry it wasn't as dark and funny as my posts usually are. There isn't really a point or a message, just a very real look into what something like this is like living with. Just some stuff I needed to get off my chest to help me deal with the reality of my situation. I'm going to be okay, I'm always ok. I always figure it out. I always get by. But this is the hardest thing I've ever faced and its never going to ever really be over. That's the scary part.

The Ugly Truth about being a "Gamer Girl"

I am going to share something that might shock and upset you.
Being a "Gamer Girl" is not as fun as you think it is.

I'm going to share with you 2 things that almost always happen as soon as you "out yourself" as a "gamer girl"

There is a huge elitist social stigma on one side, and a blinding creepy obsession on the other.

Neither of which are fun, I will explain:

1. They Don't Buy It

For real, they think you are just doing it for attention. The only way to validate yourself, which by the way ladies, you don't have to do, is to have played and be good at literally every game they have ever heard of or they give you zero credibility.

You don't have to be a master of everything to be allowed to be part of it!

Take me for example, I don't currently play first person shooters. I did play Halo 1-3 when I was younger, but thats about it.

In fact my sweet 16 birthday party was not a sleep over with a bunch of girls doing each others makeovers and drinking Smirnoff Ice. I had my guy friends over, and we had a Halo LAN party. This was when you needed 2 Xbox Original consoles, 2 copies of the game, a LAN cable and 2 TV's. We had the teams on their own TV, so you couldn't see where fucking James was sniping from. We ate pizza, and gamed, and that was my life most of high school.

But other than that not very good at FPS so I just die a lot and don't have any fun playing them. People who kept with those games have mastered them so I just have no place there.

I'm a self titled Vintage Gamer.

I was born in 1987, so I started gaming in the early 90's. I first started playing video games on 8 and 16 bit systems, before save cartridges/files even existed. You had to start from the beginning every time you turned on the game and see how far you could get. Some games had passwords for the levels that you might have scribbled on top of the pizza box, and if your Mom didn't throw it out yet you could start at the last level you completed. You also couldn't look up cheats online, because internet was not in everyone's homes back then either. You had to go to the drugstore and hope that the game you were playing was featured in the current issue of Nintendo Power Magazine. You couldn't just look up the map to the castle in Zelda: Link to the Past. You were going to spend lots of time figuring out how to get in and out by yo damn self.

So you get the picture, I grew up playing on a Nintendo, Turbo Grafx, Sega, Commodore 64 ect.

So of course this was before FPS games existed, before the internet, before mods, before twitch streams ect. The gaming world has evolved incredibly. Its even a competitive sport now technically.

But think about it, when the Nintendo 64 came out, and multi player games like Mario Kart 64, Golden Eye 007 and Mario Party ect. were welcoming people who didn't typically game. This allowed everyone to connect with old school gamers, and games were enjoyed by the whole family with people of varying skill level still having fun. I feel like this was when being a "Gamer" really changed. It started an era where suddenly there was a type of game for everyone. I don't really even know why its a "thing" anymore. So many people play video games now that its like identifying a group of people for eating pizza. Everyone eats pizza dude. Its a first world past time and everyone is included.

So for people to try and find out if you are a real gamer or a poser is just stupid. The gaming world includes everyone. You can be a PC Gamer, Console Gamer or even a Mobile Gamer, it all counts. [Too Soon Diablo Fans? I know I know, we will keep waiting I guess] So I say find what you like, and just enjoy it and don't let anyone tell you otherwise.

You can go play PUBG while I cozy up on the couch and replay Super Mario RPG: Legend of the 7 Stars for the 8th or 9th time and hope one day I will get a Geno Doll of my own to display proudly on my shelf of vintage video games.


2. Must Unlock Gamer Girlfriend Achievement 

Now, lets talk about the other problem. The opposite problem.


The one where the fact that you play video games and have tits suddenly puts you on a pedestal for some reason. This one drives me even more crazy. Its kind of like a cupids arrow for some guys when a girl likes video games. Regardless of what other un compatible traits this girl might have, or how cray she might be, if she plays video games and doesn't look like a gargoyle, he must have her.

Let me get one thing straight. I'm no fucking Steam Achievement okay? I am a real person with thoughts, feelings, flaws and a mind of my own. You do not get to own me. Stop treating girls who play video games like something "you must have" or call me your "dream girl" You don't know me. Don't fawn over me like you are in love with me before you even know who I am. Its not genuine affection and I don't fucking want it. You don't love me, you love the idea of me.

Are you really going to love it when I'm balls deep in Final Fantasy 10 fighting Seymour Flux and I tell you to shut up because I need to remember if Lance of Atrophy or Cross Cleave is coming up next, and if I lose track of his move order I'm dead? Trust me, I'm not cute in these moments. I mean if you want to take this pen and paper and count how many Tonberries I've captured in the Omega Ruins for the Monster Arena sure, but other wise go away. I don't ask you if you remember the day of your Christmas Staff party while you are playing Call of Duty, don't talk to me during a boss fight. This isn't a porn hub fantasy, you are not going to be able to start something while I'm playing a game. Don't touch me, I will hit you.

So please, take me seriously and take the time to get to know all of me. Playing video games isn't my entire being. I have other hobbies, I have other things that make me who I am. There is an entire person that comes a long with it and it would be nice to know you desire the rest of that bundle.

Don't hold me to different expectations because I am a girl and don't revere me because I am a girl either. [Social] Gender is stupid. My private parts have nothing to do with video games so please just treat me like a person?

5 "Quote Memes" You Need to Stop Sharing. Right Now.

There is a ton of content online for images with quotes of inspiration, feelings or advice.

Some times you want to share something in someone elses words that you relate to because you struggle to find the words your self. This is pretty normal behaviour.

However, some of the stuff thats floating around out there is non sense. It could be toxic and may impact your life in a negative way when you share it. Let me explain.

First let me remind you all that mediums like Facebook are a public place. Even with a sensibly monitored friends list, and the use of different privacy functions, that stuff is still public.

Many people like to put out what they believe to be the best version of them selves online. We post our most flattering photos, our accomplishments, our best thoughts, things about our selves we are proud to love and share with the world.

The world you guys.

Sometimes when Facebook asks us "Whats on your mind Michelle" we take it a bit too literally!

I'm going to identify 5 types of quote memes that you might want to pass on sharing.

1. "Quote Memes" That Validate Your Toxic Behaviour

There are 2 reasons why you should stop sharing this one specifically. First is that there is no confirmed documentation that M.Monroe actually said this, so its not accurate to attribute it to her. Whether she said it or not, doesn't make it more or less valuable, just look at the context. This entire notion itself is stupid, and in a lot of different scenarios is absolutely terrible advice. Its an incredibly easy way for a narcissist to justify their terrible behaviour and it needs to stop right now. Its not an excuse to use people you love as a punching bag so they can be "rewarded" with your best self after you get your shit together. This does not justify you being toxic to others around you just because you are in a bad space. Its is up to you, and only you to manage your worst self so that you can get past whatever it is you are going through, and become your best self. That's it. Pretty straight forward.

2. "Quote Memes" That Encourage Toxic Behaviour in Others

First of all, don't tell me who to marry. Second of all, NO. When you block someone, it means you are trying to set a boundary with that person. It means either for now, or for the foreseeable future, you do not wish for this person to speak to you. Even if this guy is your partner, you are saying "I need space" Everyone manages stressful situations differently, and all though men are often attributed to needing space and time to sort out their thoughts before they can talk after a fight, that need is not gender specific. If your partner sets a boundary, whether or not that aligns with what works best for you, you need to respect that. After they have calmed down and are ready to talk, then you can explain to them the negative impact that the silent treatment gives you and how to compromise on solutions that work better for both of you to communicate in the future. But for now, if they blocked you, for a valid reason or not, leave them alone. I shouldn't even have to explain this and this picture should not exist.

3. "Quote Memes" With Obvious Spelling Mistakes

I don't know, maybe this "cold hearted bitch" is also part of a foot, or shoe, or species of fish. Who am I to judge. But I think they probably meant to say "beautiful soul" instead. So if you didn't catch that, and you shared it on your time line, I'm going to quietly laugh at you. I personally wouldn't go out of my way to make you feel stupid, but I would scroll past it and deduct that yeah, you're kinda dumb. Though beware, the grammar police are coming for you! I'm sure I've make spelling and grammatical errors before too & auto correct is also a jerk. The English language is kinda of stupid, lots of words sound the same and have different meanings, but some of these words are pretty common, come on kids, stay in school.

For the quote itself, honestly I would prefer you believe neither. Maybe you should start with a clean slate and decide for your self what you think of me? If life has taught me anything, its that no one knows anyone. People sometimes don't even know them selves. No one person is 100% predictable, and its because people grow and change every day. The person you thought you knew yesterday is a different person today. Remember that.

4. The "Too Busy Meme"

There are many versions of this meme, and I might have even been guilty of this one at one point in my life. However I don't think you should share it, because there are too many times it puts people on the chopping block when they don't deserve to be. The number one reason is this. The most important person that you need to make time for is yourself. You cant do that if you have to run around and be a super hero all the time. We all know that person who skins them selves to heal the wounded around them and they deserve to take some time to work on them selves. So let them. You have to learn how to set apart the people who "leave you on read" because they cant be bothered to type back, from the person who is at work, and needs to leave their notification tray clear for incoming messages or texts from their boss. Yes, people use their cell phones for work. "Active" does not mean "Available to talk" People may also be fighting their own battles you don't know about and cant be the friend you deserve right now. It does not mean they don't care about you. I have 500+ friends on my Facebook page and I can count on one hand the ones I have not met in real life. Every single one of those people are important. I do not have time for all of them. Its just a physical impossibility. However if there is someone you have reached out to that keeps letting you down, then yes. Let them go. Some people are just meant to be acquaintances and casual friends. Its not that big of a deal, that space in your inner circle is just meant for someone else. You don't need to write them off completely.

5. The "Woe is Me[me]"

I know, I am such a hypocrit! I have posted milder things of this nature before in my life too. However, that is exactly why I can tell you that posting this stuff on your Facebook is a bad idea. One of 2 things will happen, but usually both simultaneously. The first is that a bunch of your friends will comment something positive, and supportive in the attempt to make you feel better. Which really, in that moment when you post stuff like this, is kind of what you were going for. However, its a little bit of a passive aggressive way of going about it. The second thing that might happen, is someone calls you out for it. Now, to those of you who do this, its kind of a dick move to kick people when they are down. It will not be perceived as "tough love" by the person you direct it to, if that was your intention. Telling an angry person to "calm down" has a much smaller success rate than you think it does. The reason I don't suggest you share this meme, even though we all feel this way, and its okay to feel this way, is that Facebook is not a safe place to be this vulnerable. Someone, who's opinion is important to you, might not have something nice to say. It can permanently damage relationships you have with friends and family members. Let me tell you a story.

I remember a time when I posted about being sick, and not having the energy or desire to cook for my self. I live alone and I don't have family here so I don't have anyone in my life who can take care of me when I am sick. I had also gone through a really devastating break up at the time. [which was not very Facebook public so hardly anyone knew I was not in a good place] I was just putting it out there hoping someone might be able to grab some things at the store for me, bring me some soup or whatever. For me to get medicine or food requires a bus or cab. Cabs cost $ and the bus takes up half my day, when I should be at home resting. Not an unreasonable favour to ask, but at this time in my life I didn't have anyone close enough to me that I felt comfortable enough to reach out to. So instead, I posted on Facebook. My thought behind this, is that if you don't want to help, or cant help, I'm not putting you under pressure to come up with an excuse. You can just keep scrolling, and I wont be making you feel guilty about not wanting to or not being able to. That's your prerogative & no one is required to take care of me. What ended up happening was an all out un-friending from someone in my circle. Seems a little extreme right? They made a comment along the lines of "you need to be more independent and take better care of yourself" I took a huge offense to this. Firstly because there are even commercials about the "man cold" We all have a laugh and think its cute that these men turn into such babies when they have a cold and they need someone to take care of them. But when I do it, in a less exaggerated way and I'm knocked down because of it. It didn't seem fair, and I felt attacked. This friend was some what close to me, this friend knew about the break up, this friend knew I lived alone and had no family near by, knew that I struggled but I was still always trying. It hurt coming from this person. I also felt embarrassed that they called me out in public like that. If it was tough love they was going for, they could have messaged me privately, we were some what close after all. I was going to let it blow over after I cooled off. Maybe she would apologize and say that she meant well. But she didn't. It wasn't until a few weeks later when her and her bf got sick and she posted about "The Man Cold" on Facebook that I deleted her. I was so mad at the hypocrisy of the situation. I was also a little bit petty and jealous that she had a supportive relationship and her family was always there for her. I didn't think she could relate to my experience so I felt at the time she had no right to publicly shame me about it. So I did what I thought was best for me at the time, I cut her out of my life. However this had long term and negative impacts on my life. There were social gatherings I no longer got invited too, and friendships with other people that weakened as a result. There were lots of people that only got one side of that story, and now think less of me because of it. 

That's why you shouldn't share this meme. Its too out of context because no one knows your struggle. It leaves you too vulnerable in a place that isn't safe. One thing that I'm learning, and that one of my closest friends is trying very hard to teach me, is that its okay to ask for help, to the right people. They once got mad at me for taking a cab home with my groceries instead of asking them for a ride, because they were out and about that day and it wouldn't have bothered them at all. Taking cabs kills my budget, but I have always felt I don't have much of a choice. I do have a choice. I [now] have people in my life that are safe to trust with my feelings of vulnerability. I can set aside my pride, ask for help, with out being kicked down, or made to feel guilty. Identify who these people are in your life, and do everything you can to keep these relationships healthy. Don't be passive-aggressive or toxic to these people when you are at your worst, and remember to thank them for being there.

In Closure

So there you have it. 5 types of quote memes you should pass on sharing.

What are other types of things you think your Facebook Feed could do with out and why? 

Living with Chronic Pain Volume 2: How you Help Vs How you Hurt

There are a lot of times people, with out even meaning to, can really negatively effect you with the things they say about your Chronic Illness.

This is going to be my summary and interpretation of this particular blog post, what was shared to me during my diagnosis of Sero-Negative Rheumatoid Arthritis 

This referring blog post shares "100 Ways to Show Up for People with Chronic Illness"

I'm going to highlight the ones I felt were most important. I will talk about why I screamed "OMG THIS" when I read it for the first time. 

(Some of them are related so I may group them together when I quote them)

"Able-bodiedness and health are privileges. Recognize that. In other words: Just because you have the physical capacity to do something or live a certain lifestyle doesn’t mean everyone does, so don’t expect them to."

Everyone is born differently, we come pre-wired with physical and mental differences that make up who we are as human beings. Whats easy for one person may be incredibly challenging to another, we may all be human, but we are not all created equal. If you watch Performing Arts, Sports or the Olympics, its a spectacle of absolutely incredible things the human form is capable of. Its inspiring and fascinating. But do not think that because we are of the same species that everyone is capable of doing those things if they "try hard enough"

"Read up on different chronic illnesses, especially those affecting people close to you. Educating friends and family about your condition can be exhausting and annoying when information is readily available. Also, having a chronic illness can make you feel like an alien. Having close ones who know what’s up can be a real comfort."

If someone takes 2 minutes to google the name of your condition when you mention it, it really helps. This person has probably explained their condition several times to people who mean well and are genuinely curious. But they are probably tired of doing it. One less time explaining it helps more than you think.

"Google is definitely your friend, but make sure that you are checking your sources. There are many scam websites and fad diet books that spread false information to take advantage of people with chronic illness. But don't start acting like you are an expert by trying to educate someone about their condition. They may talk to their doctor more than you do to your BFF."

Speaking of Google, be careful. Lots of what is posted on the internet is crap, and people are trying to take advantage of you for your money. People will say that about doctors too, but someone who paid thousands of dollars to go to med school and thousands of hours of learning put in a lot more effort than some idiot with a blog or a website did. So if anyone deserves your money, its them. Especially since they might actually know how to help you. They also have a consequence and liability for giving you false information, the internet doesn't. So keep that in mind.

"Don't ever question the legitimacy or severity of someone’s illness. Comments like, “I heard that was psychological,” or, “Everyone seems to have an autoimmune disease nowadays,” are extremely insulting. Sit down. Know that not having a diagnosis does not mean someone is faking it. Many chronic illnesses take years to pin down and some symptoms never add up to a neat diagnosis. That doesn't mean that the person experiencing them is not suffering. Keep in mind that even doctors and researchers don't have it all figured out when it comes to chronic illness. That doesn’t mean certain illnesses aren’t real, just that they are not yet classified. All medical conditions weren’t defined at some point—think about it."

I said this in my last blog post when I told the story of my diagnosis, we are advanced but not that advanced. We don't know everything about our bodies and our environments yet. My diagnosis took so long because I have Sero-Negative Rheumatoid Arthritis. Sero-Negative means the RF marker (Rheumatoid Factor) does not show up in my blood work. It doesn't mean its not there. It doesn't mean I'm not in an incredible amount of pain. Humans are very vain, we really have too much pride to accept that we don't have all the answers. That's why we invented, yes I said invented, religion. We cant accept the notion that "we don't know"  Well we had better learn to soon. There is so much we still don't know, and we will be a lot more receptive to growth if we stop acting like we know it all already.

Never tell someone with a chronic illness that they look “tired” or “sick” as a way of affirming them. That’s not the kind of affirmation we need, thanks. It's more than OK to tell someone with a chronic illness that they look good. Who doesn't like to hear that? But don't say, “But you look so great!” when someone is telling you they don’t feel well. It’s invalidating. Saying “But you look healthy!” is even worse, obviously. Also, please don’t compliment someone with a chronic illness on weight gained or lost as a result of symptoms or treatments.

This is really important. We don't want to be identified by our illness and most of the time, we don't want to talk very much about it. We don't want our symptoms to be affirmed or invalidated. We are simply just talking about how we feel, probably, only because you asked. Less (dialogue) is more, so please just listen, and don't feel like you have to solve this for us. Just make us feel like its a safe place for us to ask for help with anything if we need to.

"In general, don’t assume that you know whether or not someone is well or healthy based on the way they look. Many people have chronic illnesses with symptoms you can’t see. Know that just because you've seen someone with a chronic illness be active or take on many projects, that doesn’t mean that they were not experiencing symptoms at that time or that they can constantly keep up that level of activity. Don’t say things like, “But you were fine just the other day!” With some chronic illnesses, there are periods of remission and flares. For others, that distinction isn’t clear and symptoms can fluctuate within short periods of time."

I wish I had periods of remission! The reason I probably didn't was because I was constantly damaging and inflaming the area through the simple task of walking to and from work every day. I was later told by my physiotherapist I should not have been walking anywhere. Its too high impact and load bearing on my joints the way they were. However, we didn't know that at the time, I didn't have my diagnosis yet. However, it was expected of me to walk to work every day, to walk home with my heavy groceries, to lift heavy things at work. I didn't have a neat diagnosis to validate why I couldn't do those things. Whether you know why or not, believe people when they say they cant do something. Even the people you think are just too lazy, and who might be just trying to get out of doing it might actually be in pain. There are fewer people "milking it" than you think, trust me. No one wants to be disabled. So please, don't think we are faking it. We are more than likely too proud to admit how much it actually hurts. Pity is not a feeling most people desire.

"Don't demand constant updates about someone's health, even if you’re coming from a place of concern. Diagnosis and treatment often take a long time and constant questions can add stress. If you are close to someone with a chronic illness, don't speak about their symptoms in front of them unless you are invited to. Let them do the talking and decide how much they want to share. Plus, you may not actually know what they’re going through."

Its pretty straight forward, we are tired. We will talk about it when we feel like it.

"Don’t tell that person, “You're going to be OK, I know it!” To some people, that can make it feel like you don’t take their well-founded fears about their future seriously. Better to say: “I’m here for you if you need me. Let me know what I can do.” Similarly, resist the urge to suggest thinking positive thoughts or saying that being optimistic is important for recovery. Can we please have feelings? Remember, people with chronic physical illness are at higher risk for depression. So, it’s especially important not to dismiss their emotional responses."

Remember, less is more. Just listen and be there. We are just as fragile mentally as we are physically sometimes. This lifestyle takes so many spoons.

"Avoid asking someone with a chronic illness whether they plan on having kids. For some, it's an extremely sensitive issue. There are illnesses that make it difficult or even impossible to have children. In that vein, never, ever ask someone with an illness, “What if you were to pass on your disease to your kid?” We can make our own reproductive decisions, thank you very much."

This one is a really big one for me personally. I have spent the last 5 or so years my self, really on the fence about whether or not I want to produce my own children. It has to do with my chronic illnesses and other reasons too. Reasons of which I don't owe you an explanation for. The only people I need to have this conversation with are my doctor, and my partner. That's it. I don't owe anyone else shit. I will write about it, on a different blog post one day if I feel like it. Till then, mind your own business.

"Listen: Exercise is not the blanket solution to all health problems! Stop promoting it as such. And know that many exercise environments aren’t safe or welcoming to people with chronic illness. Teachers and trainers sometimes push their students in ways that lead to injuries or shame them for not being able to keep up with the rest of the class. But exercise is an important means of symptom management for people. If you see someone with a chronic illness exercising, don’t assume they’re all better."

Please allow the doctors and physiotherapists to suggest safe exercises based on that persons individual needs. If you want to help, ask how you can help. Maybe they wish someone could take them to the public pool where they can practice their prescribed aquatic physio exercises with out having to pay for a session with their physio therapist for exercises they have already memorized. (Yeah that shit isn't free by the way) Having company makes us feel less stupid about the funny movements we are making. Or give someone a ride to the gym, maybe walking isn't recommended but the physiotherapist said a bike with low resistance can be good for them. Or if walking is good for them, offer to be a walking buddy. But don't pressure them. Let them and their doctors decide whats best.

"Never shame someone with a chronic illness for taking medications. Being critical of “big pharma” is OK, but there is nothing more annoying than being asked, “Aren't you worried what all these chemicals are doing to you?” about medications that keep you alive. Never, ever suggest to someone with a chronic illness that they should get off their meds and heal themselves with a diet, crystals, or supplements instead. That can be extremely dangerous. Do not poo poo “western medicine.” Do not poo poo “alternative medicine.” Know that different kinds of treatments work for different people and just stay out of it." 

This one is probably the most important. I know you all mean well, but please stop. I know you honestly believe you are right, and that you are only trying to help. But stop. You could be wrong, and you could be hurting us.

"Banish the words “Have you tried...?” Yes, yes we have. Just assume that we've tried everything, from conventional drugs to parsley tea."

For real, we have tried everything. I have said this before, but some of these trending health solutions are expensive! Most of them are not covered by extended health and we might not be able to afford them. We also might not be able to acquire these things legally! yet It could also be treating the symptoms, but not the cause. Just let us and our doctors figure this part out okay?

"Ask your friends with chronic illness how you can help them. Cooking meals, giving rides, or accompanying on doctors' appointments, can mean the world to those who need the help. This may be especially true for people living alone."

 If you really want to help, this is how. However, please mean it. There are many people who mean well when they say thing like "let me know how I can help" But sometimes they say it, because it makes them feel good to say it. Please make sure you actually can help. Its nice that you want to, but you wanting to help doesn't mean anything if you are not able to. I cant tell you how many people who said they would be there, left my message on read when I did reach out for help. This is devastating and makes me feel like a burden. it makes me feel like its not okay to ask for help. Sometimes I feels like I'm expected to buy help. The thing we need most is a safe space where we can be vulnerable about our short comings with out consequence. I live alone, I also don't have family here to help. If it weren't for the kind hearts of a small few of my friends, I would not have got my diagnosis from my out of town specialist, and I would not have the opportunity for a semi normal life. Also keep in mind how expensive it is to have a chronic pain condition. We might also not want to admit that giving you gas money comes out of our overdraft. So if you offer to help, please mean it and don't do it with any expectations of getting something in return. We may only be capable of gratitude right now until we get back on our feet.

"Don’t assume that people with chronic illness can’t ever hang out! Include them, but if they can’t make your event, offer them alternatives like watching a movie or having a face-time session. [In a group setting] Avoid accidentally disclosing someone's diagnosis. Just because someone confides in you, doesn’t mean that they are out at work [or other peers]. It's always better to double check. When you have to accommodate someone with a chronic illness, do not act like you're being put out—no groaning, moaning, or haggling with someone who is asking for accessibility, please."

There are many other references in the blog about how to help someone in a group setting. We want to be included, and we prefer discretion about our unique needs. We are trying to enjoy our life with out having to think about, or talk about our illness all the time. I have a friend, who also has a chronic pain condition, that differs from mine. They live a much more active life style than I do. They like to go for short hikes to neat and beautiful places in our area. Many times in a row, I declined offers to go out for these walks. Mostly, because the weather was too cold so I was too flared up. I said, "Not today but thank you for trying and please don't stop trying" Now that I am managing my symptoms with medication, I can go on these walks again. My few times in a row of declining didn't make her give up on me. I knew she was there to pick up where we left off when I was ready. Keep this in mind when you have friends with a chronic illness. Even if they have to say no, its nice to know someone is thinking about you. 

"Living with a chronic illness is expensive. This can't be understated. Even people who have health insurance have additional financial burdens that can be astronomical. So keep that in mind when inviting people out for expensive dinners or trips." 

On the other end, please understand that if you ask someone with a chronic illness to be in your wedding party at your destination wedding in Mexico, that you are asking them to do something that is an actual, literal nightmare for them. Not only can they probably not afford it, but travel is excruciating for some people. Did you know, that in downtown Playa Del Carmen you cant use the seating on the beach, or the bathrooms if you are not a paying customer? I'm sorry, but I'm in Mexico, this is not my usual diet. I need to sit, and I need to shit more often then I have the need or desire to buy something. So please consider your friends and family when planning these kinds of things. Its heart breaking not to be included in them, and very hard to participate. Try to find a compromise before they have to ask for one.

Even here in Canada lots of expenses are not covered by BC Medical and Pharmacare. Lots of them only kick in after you have already spent a fortune, and people with extended health may have to file for reimbursement, having to pay out of pocket first. Some things are only partially covered. Many people, like my self, are just scraping by. Even when I was working full time with benefits I struggled. Now, I only work part time and I don't have extended health. Sometimes its not possible for us to work more hours to make more money, and if we don't have our diagnosis yet, we may be in eligible for disability or medical EI. Lots of folks count on their entrepreneur projects to make ends meet. If you know someone with a chronic condition who sells tupperware, leggings, essential oils, jewelry, art, soap, or anything that might interest you, then keep them in mind before going to the mall or shopping online. Your $20 could be making a huge difference in someones life. This might be their only way they are capable of making a living, and covering their expenses. Many of us are too proud to ask for hand outs, and might refuse them if you offer. But there could be ways for you to help, so look for them. We will be eternally grateful that you did. 

So that pretty much covers the topics I wanted to talk about. All 100 of them are incredibly valid, and if you want to read it, and share it, there is a lot of really helpful information there for you and others.

I'm not really sure what Volume 3 and beyond will hold for this topic but I am sure this wont be the last time I talk about it. The key word in "Chronic Illness" is Chronic. I might have set backs that I need to talk about in order to get through them, and I might over come challenges that I want to celebrate. Either way, I appreciate your time. Thank you for listening.

Living with Chronic Pain Volume 1: My Diagnosis

For those of you who probably are not aware I have a Chronic Pain Condition.

Who knew? But did you know there are millions of people around us every day who are suffering and fighting with them selves constantly and you might have no idea? Every once in a while we see a post on Facebook, reminding us that we don't know what other peoples struggles are, and to be kinder to one another.

I'm going to let you into my personal hell that is my story of how I was diagnosed with a Chronic Illness. So its going to be a tough read, and I thank you in advance for going along for the ride.

Chapter 1: Ouch, That Hurts Fall 2017
So this chapter is pretty straight forward. It started with, and I cant even remember which one, maybe my right knee. I don't remember doing anything to it. I just noticed something different.
Ouch. That hurts. Its Swollen too. What the heck. Oh well, lets take it easy maybe? Its getting cold, maybe I wont go to karaoke unless I have a ride or something, I'm sure they wont really miss me. I just drink Southern Comfort on ice and sing the same damn Audioslave and Chili Peppers songs every week. Maybe someone else wants to sing them. 

Some time went by and regular things that normally wouldn't bother me, like moving around furniture or crouching in a cupboard seemed to cause incredible pain or discomfort. Then, my other knee would bug me, it seemed to go back and forth.
Oh its because I'm compensating for my shit knee, no biggie, just take it easy! My knees haven't been great, remember that time I think I tore it "play wrestling" with the boys on the gym mats in the mezzanine? I limped for 3 months, I don't think I went to the doctor about it either, wow I probably should have..  why didn't my parents take me? Oh right, I'm like a cat, and like to hide my injuries instead of using them for attention. Maybe they didn't know how bad it was? Wow I am a dumb, proud creature. Its ok, it will pass...

Chapter 2: Something is Wrong Winter 2017
By this time I was starting to realize that this wasn't going away. I would have maybe one day every week or so that felt a tiny bit better and then it would be right back again. It also startted to happen in my elbows and hands.

It was coming up on Christmas, and I was working Monday to Friday and we were slammed, which means no ducking out early for a doctors appointment. We just received a ton of new retail so that meant hundreds of new SKU's and I was the only person who knew how to create these in the system. I was just too busy to deal with it then, so I suffered silently, perhaps too silently.

Christmas is coming, so Ill have some time off, and see my family, it will be really nice. I cant wait.
I didn't say much to my family about what I was going through, but by this time, I couldn't stand for more than 2 minutes or walk for more than 10. It was really bad, but I didn't know what to say about it because I didn't know what it was. I didn't want to make a big deal about it because I didn't know what was wrong with me. I didn't want people to think I was getting fat and lazy.

But that is exactly what one of them said to me, that I was just fucking lazy.

I wont say who it was, and in hindsight, they are sorry they said it. I know that person will probably read this. I know that they are sorry, especially now that they know what it is. However at the time, this comment fucking destroyed me. I am a sensitive person, and I talk a big game but I am fragile as fuck both mentally and physically sometimes. I am also a stupidly proud person and don''t want to be that person who complains for attention. I don't want people to feel sorry for me. So if I do say anything out loud, ever about my pain, either physical or emotional, it might be 10x worse than I say it is. However, I was very visibly in a great deal of pain. I had a obvious limp and slow pace when I walked, and I grimaced quite noticeably, and audibly when I got out of a chair. So this comment upset me because I wasn't lazy, I was suffering. I thought that much was obvious.
So that kinda ruined my Christmas honestly. 

Chapter 3: Paging Doctor Fuck-Around Winter 2018
So Christmas came and went, I could finally take a half day to see the doctor. Now I used to have the most amazing doctor. She was caring and kind. She was one of the only people to ask how I was doing, that seemed like she really meant it. However, she retired. Or so I am told. There are no doctors taking new patients where I live, and any that are, fill up before you can hear about them. However, the Clinic I went to, had passed on her clients to either one of the new doctors in that clinic as they were taking over the practice. Except, they are both going on maternity leave in staggering times of 2018, so its going to be a mess around, but they promise me in a year or two I will get to have one doctor.

I could tell immediately, the stone cold, un-caring face of this doctor as I told her how I was feeling, struggling to describe what it was maybe made her think I was making it up to get some real nice pain medications or maybe a green card. But I wasn't. I just wanted to know what was going on with my body, it seemed really bizarre to be a 30 and sound like I am 60 when I get out of a chair. I couldn't actually tell what she was thinking, I just didn't get the vibe from her like she gave a shit at all. She tossed some blood work requisitions forms at me, didn't tell me what she was testing for and sent me on my way.

So I did these tests, and I am a nightmare for nurses at the lab clinic. I really don't mean to be, but I have deep and tiny veins. I also couldn't straighten my arm all the way. It was too swollen. So my veins are so hard to get blood from and most nurses roll them which make me get light headed and sometimes nearly pass out.

At this first of many visits the nurse pulled 5 vials before the blood catheter clogged and they would have to poke me again with a new one and re draw the last vial. I agreed, but my body didn't. It had enough. I started to pass out. So I had to wait until I had my legs under me again, and then come back for the last one another day.

I'm going to skim over the re visits to the clinic to get that last vile, and the other times I had to go back to re check for weak positives or false negatives. Even though they are huge clues to my final diagnosis, its was long and annoying for me to go through at the time, I don't really want you to go through it either. But by the looks of the blood work, we were checking for Lupus, Rheumatoid Arthritis, and other Auto Immune markers in my blood.

I will go on a mini rant about the "no news is good news" policy in Canada's Health System. If you don't hear from them about your test results, it means nothing bad was found. No this isn't good news. It means we don't know what it is and we should keep looking. For you to not call me into the office to go over the fact these results yielded no answers, and we need to try something else, means you are shit at your job. I obviously have to come back in, just call me and tell me so I don't wait around a couple weeks when my lack of results have reached you 4 or so days later.

So when I did go in and ask about my results it gave me more questions than answers. Rheumatoid Factor was Negative. There was a weak positive on my Auto Nuclear Anti Bodies (auto immune stuff) to which my doctor wasn't worried about, but I was. She said she would refer me to a rheumatologist but it was going to be a long wait. So I saw the other doctor in the clinic for a second opinion and got re tested, negative. But the other doctor gave me some stretches to help me get going in the morning and prescribed some Naproxen for the pain.

Chapter 4: The Lonely Hospitalization March 2018
It turns out I am allergic to Naproxen. I'm allergic to a lot of stuff, mostly just sulphites, which are in everything. Though I have reactions with medications from time to time too. So having an anaphylactic reaction, having to use my Epi-pen, call 911 and wait for the ambulance is something I have had to do before, twice. This doesn't include the 5 or so other times Ive got to the hospital with out an ambulance or an EpiPen However, this was the first time I took that ambulance ride alone. This was the first time I went to the new hospital, and it was grossly understaffed that night. It was 4 hours before a doctor saw me. The triage nurse poked me with a catheter in my hand for an IV when I got there, but never used it. The EpiPen had done its job and since I had another one at home, they just let me go home after 4 hours of sitting there, by my self. They didn't give me prednisone for 3 days after my reaction like they usually do (to prevent a recurring reaction) I had no one to call to come get me so I spent the last $20 bucks in my wallet on a cab home from the hospital at 3 am because I couldn't think of anyone who would answer that call if I tried. When the triage nurse asked me who my next of kin was, I said no one. Which confused them, so I left my co workers name and number because if anyone needed to know I wouldn't be there in the morning its the person who has to cover my shift.

This is where the story goes from an annoying mystery, to emotionally damaging. I could deal with the doctors fucking me around, it just meant I had to push a bit to get some head way, and I was okay with that. Id been single for a while and it was in this moment I realized how alone I was. I honestly had thoughts of dying, and no one other than work noticing. This was the first time I actually shared what I was going through on Facebook. I was reluctant to do so, as I didn't want to be that person and I didn't want people to feel sorry for me. But I needed help to get through this. I had a mini mental breakdown. I sprang back, as I always do. However this was the first time I was starting to see the emotional repercussions of having an un-diagnosed pain condition. I felt helpless, and hopeless.

Chapter 5: Doctor Google Spring 2018
After I got out of the hospital I was told not to take Aspirin or Ibuprofen as they are in the same drug family as Naproxen. So what the hell could I take then? Tylenol. How much? Up to 4 grams a day if you need it. That is about 7 Extra Strength tablets a day. Okay so, sorry liver but yeah, even 7 doesn't do a whole lot. So this was about the time everyone on Facebook started offering well intended advice. Try Tumeric, DMSO, CBD, ect. I'm going to re visit this later too, and all though some of the ones I tried offered minor improvements to the symptoms, and your intentions were good, it was like trying to treat a gun shot with a band-aid. I didn't have money to waste either, some of this stuff, because its trending, is expensive and also difficult to acquire... legally right now. It also wasn't treating the cause, whatever that was, so whatever did offer relief, I had to use TONS of it. I couldn't even have a hot bath because I couldn't pull my self out of the tub. Nothing really helped.

I was also getting people trying to diagnose me VIA Facebook, which turned into a downward spiral of obsessing over my symptoms on the Internet. I had convinced my self on several and separate occasions, that I did have Lupus, Fibromyalgia or some form of Arthritis. My doctors were checking for these at various times, because I had he symptoms. So when all these were coming up negative, I had more questions then answers, and would jump on and obsess over the next one. I wanted answers, and solutions. I couldn't sit there and do nothing. But this was toxic and probably didn't help my situation at all. I wasted so much time and energy on it. But the wait lists for specialists are long. I'm impatient. Waiting it out would have been the best thing for me to do, but I couldn't. In April, I finally got a phone call for my rheumatologist appointment, they can see me on July 3rd.

Chapter 6: Identifying as Disabled Spring 2018
As this developed, I had to make very big changes to my lifestyle. I don't drive so I walk every where. It used to take 12 minutes to walk to work, it now took me 20-30 minutes. Some days by the time I walked into the front door of my work and saw the expression on the face of my colleagues at the desk change from greeting to concern, as the walk caused me so much pain, I couldn't hide it in my face, sometimes it would make me burst into tears. I couldn't live like this anymore. It was taking a toll on me mentally and very negatively impacted me at work. Those who worked closely with me were very understanding, and I still cant thank them enough for their patience and understanding through all of it. The doctors were afraid to try any medication for depression and anxiety because of my history with drug allergies. I really was doing everything I could, but there were days I would fall apart.

I was later told by specialists I should not have been working, but with out a diagnosis, you don't have a good reason not to work and still get paid, so I had no choice

I was also acutely aware of the struggles disabled people had when venturing out in the public. I suddenly realized why crotchety old people were so old and crotchety. It was an incredible challenge to do simple tasks like get groceries or wait in line. Waiting in line It was terrible, I couldn't stand for more than 2 minutes so if that line wasn't moving fast enough for me to reach the limit of trying to ignore the pain I was in, then I got pretty cranky. I was not having a happy life. That much was clear.

By this time I thought, I needed to swallow my pride from time to time and except that my body cant do everything it used to. By this time, since everything except fibromyalgia was ruled out, I was identifying as having fibromyalgia to conveniently explain my needs to others in one sentence. I honestly believed I had it at the time, since to diagnose fibromyalgia, you rule everything else out first. Believing my doctor had done that, it seemed this was the path I was on, and my appointment in July would merely confirm it. Looking back on it, I feel like I lied to people. For that, I am sorry. Fibromyalgia is actually much worse than what I have. But I otherwise didn't know what to say.

There are a scenarios where I struggled to explain my needs to strangers, even though I shouldn't have to.

Between my work, and my home is a huge construction project. The entire road, and side walk has been town up to be re done. This project is still on going, it started in the spring and was supposed to be done by October 1st, and still isn't done. Going around this site results in a 15-20 minute detour to an able bodied person in the opposite direction. (on foot) However the first time I tried to walk my usual path home from work, I was stopped by one of the flaggers. They told me the side walk was closed, and I had to go around. "I cant go around I have fibromyalgia" She looked at me rather puzzled "Is that some kind of phobia or something?" At first I thought she was mocking me, but I ignored it. "No it means I am in a lot of pain and walking is already really painful as it is" Then her tone seemed a bit more sincere "Oh you are disabled..." (This was the first time anyone had ever referred to me as disabled. Honestly the words hit me like a brick shit house) She clearly was just trying to do her job, she kind of looked around and finally said "We'll okay, I just don't want to get in trouble, if anyone says anything to you, you tell them I tried to stop you" I agreed, and thanked her and like the bad ass that I am, I walked on that closed side walk every damn day. One of the side streets in this zone has a minor short cut. It is one of many otherwise dead end streets along the road, so I used this to my advantage. I would duck down this street as it was closed to local traffic only and use a short cut that came out near my street. I had, with out words, convinced the crew I lived on that street so they kind of had to let me through. It wasn't the only way home, but its was my only way home.

I didn't speak up about my being disabled often. Only when there was no damn way I could suffer to walk a detour there and back 5 days a week for several months. No freaking way. there were a lot of times I sat in frustrated silence at able bodied people, or their back packs occupying the last seats on the bus. I even went to Vancouver to go to a concert with my friend at a night club. Great fucking idea that was, I cant even dance. But this person was really important to me, I don't see her much and we were getting to see an artist that pioneered a music genre that means so much to us both now. I really didn't want to cancel, and I didn't have much to look forward to these days. We set up camp at some stools that over looked the stage and dance floor, had some drinks, I stood and danced when I could in front of my stool, for 2 minute intervals from time to time and sat back down. People to either side of us changed through out the night, and it had become apparent that other people were eyeing up our spot. I started to notice some eye burning in the back of my head after a while. My friends boyfriend guarded our stools when we went to grab a drink, go to the bathroom or stand up for my 2 minute dance interval. Shows go super late so it wasn't completely over but we had a good night. so when we went to leave, the girl burning a hole in the back of my head brought up an image on her phone and showed it to me. It was Black Background, White Text, and it said Savage. I was kind of puzzled at first, but we were leaving anyways, so I just made a "wtf" face, shrugged it off and walked away with my friends. If the stool was what she wanted, she could have it, we were leaving. When we got outside away from the loud music, I explained to my friends what I had just experienced. I cant even be sure, I can only assume it was because I was hogging the stool all night. It was crowded, its not like my limp was obvious when you are playing frogger getting around a busy night club, so I will give her the benefit of the doubt. But it made me more acutely aware of how so many of us suffer, not so obvious struggles. By this time I got really exhausted explaining my limitations to people all the time to my peers, I didn't feel I owed it to strangers.

This instance bothered me a little, and it made me realize that big cities are not disability friendly. Standing on the sky-train and waiting as a foot passenger on the ferry is a nightmare.

PSA: Those seats are not for your back pack. I have social anxiety and I don't want to sit next to you either. I'd rather an empty chair between me on either side too, but when its that fucking busy, you suck it up and share. You are being an asshole. Just because I look able bodied, doesn't mean I am, and I shouldn't have to say I have something like fibromyalgia for you to let me have the seat.

Chapter 7: The Wait is Over July 2018
Finally. I was nervous and excited. I was excited to finally have answers, but I was also nervous about how I would feel if we didn't have answers. By this time I was in so much pain and if they couldn't help me, I didn't know how I was going to live like this. The specialist was out of town, about an hour drive. My friend has a specialist they see in this area too, and we conveniently had appointments on the same day, so he offered to drive me.

I felt good about this because it wasn't out of the way so much for them compared to anyone else I would have swallowed my pride enough to ask. I don't like to ask people for much, as a strong independent woman who has her own place I have enough to get by on my own, but not much wiggle room. So even giving people whats fair for gas comes out of my over draft, so I don't ask for rides if there is a manageable alternative. I also don't like to bug people.

The specialist, was amazing. She reminded me very much of my family doctor who had retired, she even knew of her. I spent over an hour in that appointment. She was thorough, and caring. I as she started to examine my joints and range of motion, I asked her flat out, if we were looking at fibromyalgia. She said no, and explained why. She said, all though I have a laundry list of symptoms, she knows its not fibromyalgia, because I have inflammation. my family doctor should have been able to tell me that, honestly... With fibro, The joints will still bend all the way if you manipulate them too, it just hurts. because everything hurts when you have fibromyalgia, in short your brain is constantly firing, or mis-firing pain signals all the time, its neurological which is why there are lots of pain and inflammation treatments that don't work So all though it wasn't an un warranted thought for me to think I had it, she knew this wasn't it. After my physical examination, and questioning, we sat down and she took out a sheet of paper. She wrote out and showed me 7 different types of arthritis I thought there was only 2, osteo and rheumatoid and crossed off which ones she was sure I didn't have and explained why. It left us with 3. She explained how we could narrow that down further with blood work, but since treatment for it was all very similar, we could start that right away, and tweak it based on that final diagnosis. Either way, it was auto immune arthritis. We just needed to confirm which one. Then she wrote out drug options, on a scale of light to heavy medication, there were maybe 5 of them. I wish I took the sheet with me And we crossed off ones I might be allergic to, ones she thought might not be effective enough and ones that they don't often recommend to women of child bearing age. She also suggested some physio therapy to help get me active again once I had relief from my medication. Adjusting to my medication was going to be a journey, but she had a plan. I was starting prednisone for relief now that I would take every day, then my other long term medication, methotrexate, was only once a week. It takes 6-8 weeks to work so the prednisone is to tide me over till the methotrexate takes over, then I wean off of prednisone as its not advised to stay on it for long periods of time. However after one day of being on it, I could bend my elbows and knees again, for the first time in almost a year.

The funny thing is, if the hospital had given me prednisone when I was hospitalized in March, like they usually do when you recover from anaphylaxis, I might have had an earlier clue to provide my doctors. Prednisone is an auto immune suppressant. This is why its used to combat anaphylaxis, and auto immune disorders as they are essentially your immune system over reacting to something. I would have noticed changes in my pain symptoms if they had given it to me back then.

But after this appointment I finally had some answers and finally was speaking to someone who actually cared. I cant tell you how happy this made me, how relieved I was. I really was going to get my life back. Words, really cant describe the relief. I couldn't wait to tell my loved ones that eventually, everything will be ok. After all this had effected some people very close to me, they wanted answers just as much as I did. We made so much progress, in one hour. One hour with the right person literally changed my life. Just a little more digging and the final answer would be there.

Chapter 8: The Final Diagnosis Sept 2018
We have 3 finalists so lets test to see which one is the winner! More blood work Yay! Its okay, this one was only a couple of vials, I took this one like a champ and I was happy to do it. I could actually straighten my arm much better now to make getting a vein a little easier for the nurse. I then just had to wait for a follow up with the specialist, and set so many drug alarms in my phone to keep my medication schedule trucking along. I did well with it, and had very mild side effects to my medications other than fatigue. I'm prone to very upset stomach so this was a relief that it was only minor.

So off to the specialist again I go, this appointment was pretty quick. We had our answer.

Sero-Negative Rheumatoid Arthritis (SNRA) In short, its an auto immune arthritis that does not show a Rheumatoid Factor (RF) in blood work, but its still there. This is why there was no RF in my first rounds of blood work I did in the winter time. SNRA is the less severe than Sero-Positive Rheumatoid Arthritis (which does show RF in blood work) However SNRA can evolve into SPRA  over time.

So there we have it. My diagnosis. I will be on the secondary medication methotrexate for the foreseeable future.

In Closure
When I said "I will talk about that later" in this post I meant it, but it will be in Volume 2 in a series of posts about living with Chronic Illness, instead of at the end of this post like I had originally planned. Creative process is neat.

There is a blog someone who actually has fibromyalgia shared with me and in my next post about this topic I'm going to talk about some points in this blog and tell you why they are so important and why they stuck with me so much, and why I wish I read it before I started sharing my symptoms and struggles on social media.

If you are some how not tired of hearing about this topic after my super long post, I will share the referring post for you now. If not it will be highlighted in my next post regarding this topic, so you can save it for then too.

https://broadly.vice.com/en_us/article/mb4kzx/how-to-support-people-with-chronic-illness

The only other thing I want to say is this, if you read this whole post, please learn from my experience. If you have self diagnosed yourself with medically unlicensed peers, or Dr. Google, please don't.

Remember when I said that one hour with the right person literally changed my life forever? Keep pushing your doctors, all of them, any of them to get you to the person who is capable of helping you. You are not going to get a short cut to a diagnosis, I'm sorry. We are an advanced society, but not that advanced. There is still so much we don't know about our bodies and the environment in which we live in. There are new things happening in the medical field every day, new conditions being discovered and treatments for them. Of course there is a portion of the medical field that is a money making industry, every sector has corruption in it, it doesn't make the whole system a fallacy. Just use your opened eyes to be able to recognize a doctor who hears your needs. Someone who treats you like a person and not a pay check. They might be hard to find, but they are worth fighting for.

Don't give up. Get a real diagnosis.

Don't just be a victim, be a survivor.