Yoga, My beautiful Hell

I’m not thin.

I’m not a size 2 but I can yoga the shit out of you.

I’m not as strong but I’m not weak minded. I use my willpower to bend the move, keep still and silent.

It hurts like hell and I have anxiety every time I’m near a practice. I know it’s gonna hurt like when a mouse gets zapped by the entrapment.

My joints don’t want to hold, bend or stretch. They prefer to be brittle and motionless.

I make myself go so I can be free. My body, mind and soul can just let be. Just for an hour or so and maybe three times a week. I feel whole and not like some invisible diseased freak.

I shed a tear every time at the end because I know in a few hours the pain comes back again… It doesn’t keep me away for very long because I am stronger than most.

I am an invisible superwoman. Not to boast but to encourage others to find their invisible cloaks.

Keep fighting. You will find your way.

RA feels like…

RA feels like being cut off by a cab driver after you’ve waited in a gridlock for hours.

RA feels like that annoying piece of meat stuck in your teeth for hours that bleeds when you use a toothpick.

RA feels like ”feeling” the burn from exercising all day. Every day. Forever…

RA feels like eating gluten when you have a severe gluten allergy.

RA feels like saving for that luxury vacation, getting there and discovering the resort has bedbugs.

RA feels like you’ve found the love of your life than discovering they’re in love with your sibling.

RA feels like that lost item in the lost and found but no one ever comes to claim it.

RA feels like you’ve aged overnight. Once a week for the rest of your life.

RA feels like someone has trapped you in a cold dark room where you can hear others but no one comes to look for you or hears you calling for help.

RA feels like you are participating in a triathlon with multiple obstacle courses that never end, they just change.

I know what your thinking, RA is hell and it is. It truly is. Recently I described the feeling of RA as being tortured.

See… you get to the end of a flare, or another health complication. You keep pushing yourself to get thru it. ” This too shall pass”… Is what you keep repeating to yourself. You get caught up in the “light at the end of the tunnel” theory however you discover at the end of this tunnel another issue waiting for you. A new area of inflammation or pain, heart disease or heartburn, skin issues, hormone or fertility issues.

Our immune systems are intelligent and will find ways to “outsmart” the medications used to treat the damage it is doing.

For instance, my biologic infusions are slowing down the progression of the disease, treating the inflammation and the pain but now Ms. RA is attacking my tendons causing tendonitis in my ankles and wrists. It’s never-ending. My team of doctors get bigger and bigger.

Ms. RA is like that friend, that’s not really your friend. She’s a friend of your friend that annoys the shit out of you but you grin and bear it…for your friend and for others.

That’s what we Chronic illness suffers due. We grin and bear it. We are truly invisible warriors. We the Invisible heroes. We hurt badly in our minds, in our bodies and in our spirits but we fight… Every. Single. Day.

We fight for our families. We fight for our friends. We fight to work and provide. We fight to try and enjoy life. AND… all these reasons are genuine but the true strength lies in fighting for ourselves.

RA may feel like shit, might be hell but a small glimpse of happiness can feel like heaven.

Keep fighting. You’re worth it…

1 year celebration

My first blog was posted exactly one year ago today.   

My first infusion with Orencia (biologic med) was December 30th, 2016.   I was terrified of the new medicine and the disease.   It was then I decided to use my own personal journey with 2 autoimmune diseases to create a real understanding of RA and Lupus through blogging.  

My goal was to reach one person.   To give that one person hope and the drive to keep fighting.   Well, I am happy to report for the year of 2017  my blog has been viewed 3,125 times.   I have 1,822 followers!!!!  So I would have to say I have surpassed my goal.

WOO HOO!!! 

I know that my blog is not typical.  I am raw and my language is real.   It can be hard to swallow at times.   I have been asked by other bloggers, Facebook pages/groups, and other media sites to change my language in order for them to post my blogs.   I can’t.  The blog would no longer represent the authentic me nor would it give the real picture of the autoimmune disease path.  

So in saying that;  I thank you all for taking the time to read and share my journey.   It is helping others.  It is reaching the people it needs to reach plus educating them as well.   Unfortunately, every day now I hear of someone being tested and/or being diagnosed with an autoimmune disease.  They are more common than apparent.  So my blog and others like it are needed… 

In much appreciation, 

Tosh  oxox

 

I cry

I cry.

I have this moment after every infusion where I cry.  I’m alone.  It’s just a few tears, but it’s tears of remorse and a reminder of my reality. 

Even after four years of coping with RA and figuring out the best treatment, I still haven’t grasped the concept of this 1000 mg bag of medicine.  The last year has been bittersweet.  The infusions are working.   I am now in control of the pain.   The pain is manageable and rarely debilitating, BUT I can’t get over this bag of medicine.   I get so emotional.     It’s as though this bag of medicine reminds me of what I try to hide from the world every day.   It feels like this medicine holds the key to all my health successes.    It resembles the past and the failures of past treatments.  It also represents my future and my life expectancy.  

As I sit here writing I think to myself when I actually pull emotions apart from logical thinking, I can recognize that for me dealing with the pain daily is more bearable than coping with “the bag” of medicine.   I can deal with the madness of the pain.  I can deal with the lack of empathy and the lack of understanding from others.   I can swallow the prejudice and judgments that come from those who don’t really understand survivors of chronic illness… but this bag of medicine causes me emotional and psychological grief.  It causes me to pause in my willingness to fight.  It makes me weak. 

And so I cry not because RA has beaten me down on this day, but because I’ve become reliant on the biologic medicine.  I lean on it to make me feel better.  I cannot fight this battle independently which is indicative of my strong personality.   It reminds me that RA cannot be cured.   It reminds me that I am mortal and there could be a sooner end to me because of it.  The medicine reminds me that RA will continuously complicate my life and my quality of it.

I’ve been crying a lot lately.  Crying to me means many things.   It is a release and a sense of power.   It is fear and its happiness.  Crying is a sense of loneliness and togetherness.

I cry after yoga which I just returned to after four years of a hiatus…(yay me!!!)  because it’s a release.   A release of stress, anger, and fear. 

I cry because I got through an hour of yoga with success.  I pushed through the discomfort and pain.  I cry because once again I backed RA up into a corner and kicked its ass. 

I cry because I know how much willpower I will have to gather to come to another yoga class.

I cry because I know the pain that is coming after this bout of yoga.  The pain that will make me second guess my successes and make me want to give up.  I cry because I know I’m going go through this cycle repeatedly. 

I cry because I feel lucky enough to have a small support system to get me through the bad times when I know many chronic sufferers do not. 

I cry because I feel alone…almost always.  Even with my small supportive group of loved ones, I truly have no one that fully understands my battle.  I cry because to truly understand chronic illness and RA you have to live it and I do not wish this on anyone. 

I cry because every day there is someone else being diagnosed with an autoimmune disease and they will feel like me. 

I cry because it doesn’t matter how many punches RA or the people who doubt me throw, I will continue to fight back. 

I cry because I know another invisible fighter will come across this, read it, understand it and know I am writing for them…

Self Date 

Self date 

*please excuse errors n typos. Written on iPhone notes in movie parking lot* 

I went to the movies alone.  No hubby, no kid, no parent, no friend… Absolutely no one and I loved it!    This freaked some people the fuck out!   “You’re going to the movies BY YOURSELF?!   Damn skippy I am.   

See .. I love myself.   If I could be friends with myself, I would (technically I am)  I would totally date myself,  if I could.  Now you may think I’m conceited…Nope …I have flaws …huuuuge ones but I kinda think I’m awesome.  It took me along time to get there.  Two all inclusive trips… travelled alone in fact.  Plus also living alone for 4 years helped.

In my late twenties I discovered that I hated myself and my life story.  All of my schooling; psychological theories that I had learned in college started to make sense and made me look at my own life.  I didn’t love myself and was basing all my decisions on what others needed.   I couldn’t even be alone in my own skin.  So I forced myself to spend time alone, away from my community.   Where I couldn’t reach out to anyone and where I had to hear and face my own thoughts.   Through these little journey’s I learned to be alone and be ok with it.  I fell in love with myself. All the good, all the bad and the ugly… I accepted. It was one of the most exhilarating experiences in my life.  

Now…. I’m heading towards my mid-forties.. I have Mr. Lupus and Mrs. RA attached to me 24/7.   These diseases are like fuck’n dogs.  Stray dogs that follow your every single move and bark if by chance you get away (forget their existence) for a few steps.  Plus I hear “momma” five hundred million times a day. Even when her father is sitting right beside her. “Babe” is called at least 25 hundred million times. The phone dings, emails and calls from your elderly mother that can’t hear shit so you repeat yourself so often, you begin to hate the sound of your own voice.   

My career is in the line of “everybody wants something from you” or “everybody wants you to fix their kids and their family”…. and when you can’t do it or you provide sound advice that they didn’t follow and shit blew up…you’re to blame. You mostly hear negative shit all day… everyday … Its exhausting. Its depressing and it overbearing to even the strongest of people.

You need a break.  A break  from everyone and everything.   The silence you were once afraid of … is amazing !!!! It’s like having the greatest orgasm after not getting any for a long time.  A break is a self date.. get dressed up and go out alone. By yourself. You can eat hot food. You can drink at the speed you want. You can even pee by yourself and not hold it …There’s no one you have to impress or hear. It’s fucking lovely!!! And no pressure to put out.

I woke up this morning in pain. It’s been 3 days … no give. My hands are a mess. I’m dropping things … I’m slow.  They ache and lightening pains shoot threw them.    I had a break down in the kitchen with my man cause the pain was unbearable and in that moment I wished I wasn’t myself.    Sooo…I dressed up and I did a few things for people I love and then I bought my ticket.  Cineplex VIP bitches!!!…and off I went.  I ordered wine, nachos with chicken and Guac (gots to go glam) and some popcorn.  I spilled my drink all down the seat and all down the side of my shorts…meh…I just used my eyeglass cloth and wiped it up.  I dropped my popcorn on the floor… all of it. Not one fucking kernel was left in that bucket… I just shrugged it off.. No need to freak. “Not on MY date”.  I watched the movie and had a grand ole time with myself, by myself for myself.  

Now is all perfect and rays of sunshine??… NO.  Life is not all roses and cupcakes BUT for a few hours I got to hear myself with no interruptions and I got to love myself in-spite of the barriers that life and these autoimmune diseases can put in my path…

When’s your self date ?  

“You’ve changed” 

“You’ve changed”  

I hear this a lot. “You’ve changed”. Absolutely I have. You cannot experience life fully without self evolution. Every life experience leaves a mark. 

“You’ve become sensitive”.  “You’ve become bitter”.  “Your anger goes from 0 to 10 in less than a few seconds”.    Yes, these statements are true.   My husband describes the change as ” you were a rock, everything bounced off you, now some things sink in”.  

There are many different facets to me now. I am human, I am an invisible fighter, and I am an invisible hero.  I am a mother. I am a wife, a daughter, and a sibling.   I’m a loyal friend with firm beliefs.  I speak the truth which is hard for others to hear.  I am disabled.  I am limited physically.   I am exhausted.  I am funny and serious.  I am silly and immature (most of the time).  I am sensitive, I am kind, and I have become a woman that I can be extremely proud of. 

I am trying to outlive two auto immune diseases.  I am trying to be physically independent for as long as possible.  I am trying to continue living my life as “normal” as possible while dealing with fear, anxiety, and anger.  Life is no longer the same.  It’s not all shits ‘n giggles.  I wish it were. With or without an autoimmune disease, life is difficult and full of obstacles.   The lighter moments are the medicine needed to keep going.  If these lighter moments are few, life can be unbearable and sometimes it is…

I have become more sensitive.   I have a child and think differently of the world than I did as a non mother.  I am sensitive to all the barriers she will need to overcome and what could harm her.   I am sensitive to world issues and how they will affect me personally as well as others.  I am now in tune with what negativity does to my soul as well as our society. I am sensitive to what I need to keep living and to keep smiling.   I am sensitive.   I do not view this as negative.  

My psyche has changed.   Building a protective wall for issues to bounce off you is a way to keep others at bay.   I no longer want that.  I want to experience life fully by showing the “real” me.

My “human tentacles” are enhanced.  I am no longer concerned about minuscule issues.  What others think about me, or what I wear, or what my body looks like,  no longer matter.  What matters is the person I am, the mother I am, the friend I am, and how I can contribute positively to my community and to society.   What matters is that I continue to be in tune with my body and what it needs.  My diseases are mine, unfortunately.   It isn’t the life gift I would have requested but this is what life has dealt me.  So I must continue my life and acknowledge that these diseases are now a part of me.  However they do not define me. 

 Think of an aching and stabbing pain.   How irritating is it? Think about how you will cope with it?  What does that pain to do your mood?  Are you thankful when it goes away ? How do you feel when others don’t understand the pain you’re enduring?  Now think about dealing with that pain every single  minute of every single day.    Well… that’s my life and the life of those that suffer from a chronic illness.  

Lupus and RA never go away. The pain lessens or intensifies but is always there. It makes you irritable, angry and bitter.  It can make you hate yourself,  others and even your life.   It causes depression and isolation.  You can go through a roller coaster of emotions… experiencing all in just one day. 

I put on my fake face for my husband, my daughter, my colleagues, my friends and even for myself.   But there are times I cannot fake it and there are times where things cannot just bounce off me… so yes I’ve changed and I will keep doing so for as long as I live.  Hopefully for the better… 

 

I can’t do this but I can do that … 

One of the most frustrating comments to having RA is “but you don’t look sick”.  For me that comment is a double edge sword. I don’t look my age. I have amazing genetics and I’m mulatto. My dad is black, my mom is white sooo the saying ” black don’t crack” … kinda true. 

I’m 43. I look 33 (so I’m told) and my body in RA years is 83. “Old … is all that echoes through my veins.. I’m well preserved on the outside while I’m slowly rotting on the inside”… “I’m slowly losing my independent existence and becoming disabled before I’m ready” 

It all started when I went to pump gas. I get out of my car and undue my gas cap … the twisting usually stings a little .. no biggie. I lift the gas pump to insert it into my tank and OUCH. It fucking kills. I can barely press the leaver down. So now I can’t pump gas ? I’m gonna have to get help for this too?  Being an independent individual all your life to now depending on others is very habilitating  mentally. It’s not easy to swallow..

Mrs. RA is rapidly taking normal everyday functions away from me…and the kicker ?? You don’t even realize until you try to complete a task and that simple everyday task causes you excruciating pain.  

I might not able to complete all tasks without help now but what can I still do independently? 

* I can’t do buttons but I can do up zippers.

* I can’t braid my daughter’s hair but I can still brush it.

* I can’t lift a full cartoon of eggs but I can still cook them (even though I LOATH cooking).

* I can’t twist a cap off anything but I can still hold a bottle or glass.

* I can’t lift more than 5lbs with my hands but I can’t lift 70lbs with my forearms.

* I can’t do creative makeup with a stroke of a brush but I can still put it on.

* I can’t run or power walk but I can walk slow with minimal pain for several hours (and then die the next day). 

* I can’t lift weights but I can swim for 500 meters in 18 minutes. 

* I can’t lift someone to safety from the ground but I can perform CPR and First Aid. 

* I can’t do my hair in fun styles but I can complete simple ones.

* I can’t wear 5 inch heels anymore but I make flats look DAMN good… 

* I can’t cure these autoimmune diseases but I can gather all the positives that surround me to help me fight another day.

All in all… a chronic illness has stopped you from doing “that “but are YOU gonna allow it to stop you from doing “this thing called Life?” …

Shut Ugly Up

Shut Ugly Up.. 


I’m a big woman. Everything about me is big. Big personality, big mouth, big lips, big muscular legs, big in height and if categorized big in shape. Plus size really. And if you follow the BMI (body measurement index -which doesn’t take into account body frame and/or muscle) then I would be considered obese…. 

Ha! Obese is such a nasty negative term. I’d rather use the term fat. Fat to me doesn’t mean ugly it means lots of body fat. Which is the truth … I’m fat. It doesn’t bother me. I’ve been mistaken to be pregnant a few times.. “oh congrats on carrying ” the person says. I say “congrats to what ? My fatness ? I’m fat not pregnant”…. I know harsh right but if you’re ignorant enough to
make a comment about my body without verification then I get to response in a ignorant manner. I do enjoy making people feel stupid in a stupid moment. 

Many woman use the saying ” I’m fat” which in many cases means their having a ” I feel ugly or I’m having a self esteem issue day or even a ” I’m having a negative mental health day” but god forbid…we use those terms. People might think we need an intervention.
If my leg hurts and I say I’m having leg pain. Why can’t I say I’m having mental health pain? I’m having emotional pain in my brain? Because nowadays if you have even situational mental health you’re a danger to yourself and to society…. you are labelled and stereotyped and discriminated against …. but that’s another blog. 

Sooo back to fat…. “I’m a big fine woman and I’ll back that ass up”… lol. True, I will…even during my worst pain … put me in the Caribbean, put on some Reegea.. I can Wine like nobody’s business….ya mon.
So I’m in Jamaica celebrating 2 special events with my family and then… smack right in my face… an ugly day. I can’t get away from it. It follows me around like a lost stray Caribbean cat looking for food.      

I look in the mirror.. I see an ugly and obese woman. She’s tired and in pain. She’s bloated and in pain. She can barely use her hands. She can barely walk. Whether she covers her body up or is naked, the feelings remain the same. She starts barking at her kid and husband, no longer the fun mom and wife…. she’s no longer the invisible hero. She’s become the visible asshole for invisible reasons. She takes a break from her loved ones. Hides in a stall in the air conditioned washrooms and has a silent cry. She reminds herself that she’s here to enjoy herself. She’s earned it and so has her family. There’s is no place here for Mr. Lupus and Mrs. RA nor body image depression. They weren’t invited nor do they have a ticket. They are not welcomed. She decides to take an Advil with some Appleton Rum… short term fix.
There’s no place for self body shaming and reminds herself that she has earned her fat. She’s had hormones and meds injected in her, she had a high risk pregnancy with a 8.5lb baby (and stayed within healthy preggers weight) that was ALL belly. She never just lays around unless she’s extremely ill and she is living through everyday. She is living like normal despite the pain.
So you know what she did… She did her make up and hair, put on a pretty dress. She got through her night and those fat thoughts disappeared. She even wore a bikini the next day… just cause. She lived anyway… 

New face in my personal space 

You get the news… you have the RA blues. 

You needs meds or eventually you won’t be able to use your legs 

And hands 

And fingers 

And feet… and so you make sure everything about you  still remains on fleek.

You attend your clinics and get your meds. 

You meet new people,  some you  might even consider another “RA fucked up” friend.

You even like the nurse who pokes n prods you. She’s cool and even suffers right along side you. 

You talk shit and try to make this fucked situation fun but then one day you walk in on schedule and  guess what ?  She’s gone… 

Once again a new face in your personal space.  

Same damn questions and you no longer have the grace.

You’re bored and annoyed and feel like a fucking toy. 

You’re not research nor a guinea pig.  You’re a person, a human with some special needs.  There’s more to treatment then asking if I sneezed… I have a name not just an OHIP number or benefits.. *eye roll*  PLEASE….   but everywhere you turn… another new medical face is in your personal space… with  very bad breath.

Truly Invisible 

Truly invisible …
It’s amazing how people talk about illness around you but don’t include you or the autoimmune diseases you battle in the conversation.. 

They don’t really see you or your struggles.  

They don’t know your ill. You look slightly tired but you look good.  

They can’t see your pain. They can’t feel your pain. So they can’t intone to your pain and so they can’t empathize with your pain. 

AND This is when you truly know your illness is invisible and therefore an invisible fighter is created  and where the invisible hero within rises.