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.

One Life

One Life

On May 19^th 2017…I’m driving to the clinic for my infusion.  My sunroof is open, and some windows are down.  My music is loud with the sun on my face.  I feel free…  I feel alive…   My thoughts travel to the happy place of my life and I realize in that moment… I have much to be thankful for. 

I may have RA and Lupus but I am alive. 

I may have to receive medication through intravenous every 4 weeks but I am breathing on my own. 

I may be in pain 85% of the time but I am still walking with no assistance. 

I may have to self-inject medication weekly but my medication is fully covered by benefits.

I have a fullfilling career that I still enjoy and continue to work full days.

I have an amazing husband who is my best friend… always. 

I have a sweet little girl who will continue to contribute to this world in a positive manner.

I still have a living parent who is full of life and laughter. 

I still travel to my “bucket list” destinations and create memories. 

I am still living life to the fullest. 

Today…May 24^th 2017 we buried a dear friend’s father. One minute he was being treated for cancer and the next, the cancer took his life within two weeks’ time.  He was almost 80 years old.  In all of the moments that I’ve had the pleasure of spending time with him, learning from his knowledge, and from his life history…I learned that life will not stop for no one.   It will not stop for disease, it will not stop for conflict, and it will not stop for any burden or misery.   Life will continue with or without you.   So his philosophy, right up until his death was honour the life you have been given.   He lived life to the fullest.  He enjoyed his family and he did his best to love life.

We may have our trials and tribulations that can bring us down but we have been given life for a purpose.   That purpose and the meaning are for you to define.   Your life is in your own hands.   You are responsible for YOUR life.  I will honour myself and honour what I have learned from this wise man…you only have one life so why not try to fall in love with it a hundred times over…

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. 

From Heels to Flats

From Heels to Flats

I’ve been addicted to shoes since I can remember.  My mother says that even at the age of two when she would take me grocery shopping, we had to stop at the Italian leather shoe store next door or else a temper tantrum would ensue.    She says that I loved to touch the shoes.  I would caress and feel the leather; I would even pick them up to smell them.  She said I looked like I was in heaven.  

My father loved shoes as well.  My mother would send him off to the grocery store and he would return with the items and a pair of  leather dress shoes for himself…EVERY SINGLE TIME.   So I come by it honestly.  Its in my DNA.

I have 250+ pairs of shoes.  In my twenties and early thirties I was like Victoria Beckham, I didn’t leave my house without heels on, usually they were 5 inches.  I worked 12 hour days in them.  I danced in them.  I went grocery shopping in them.  I even wore 5 inch heels until I was 6 months pregnant.  They made me feel tall and proud.  Even though I have struggled with body image all of my life, I love my feet.  No matter what your size you are, your feet in beautiful and unique  pair of shoes stand out before your flaws.   Almost everyone can appreciate a good pair of sexy heels. 

Shoes are my therapy.   When I shop for them, when I wear them and when I plan an outfit around them, they make me happy.  I may have a slight problem but who I am hurting really?  I contribute to the economy and pay for them myself…  AND that’s the only rebuttal I have to that debate.   LOL

Now that Ms. RA has decided to make a lifelong visit, heels have become flats.  Well THANK THE LAWD!   flats have become cute.   When I had to buy Birkenstock’s to replace those heels at 6 months pregnant,   I cried like a baby!  In my opinion “Birks were ugly and nasty and only old people with fucked up feet wore them”.   Now I have 8 pairs.   LMAO! 

 I still wear heels to this day.  I’m not supposed to.   The RA has destroyed my ankles and feet but I told my Rheumy “if you take away my heels then you have destroyed my soul”.  I know… dramatic right?    I don’t care.  Shoes are how I express myself.   I am not creative.  I don’t do art.   I don’t paint.   I wear fashion… and my fashion starts with what I put on my feet.  AND So Rheumy and I compromised.  I only wear 3 inches now 2x a week.  I travel with usually 2 to 3 different pairs of shoes to change into cause let’s be honest…. RA has screwed up my joints so bad that no shoe in this world is going to feel comfy for long…

Recently I met my girls to go shopping knowing full well that walking around a mall for hours was going to damn near kill me.   I almost cancelled but my hubby said I needed to go.  Not only for the retail therapy but for the jokes and silliness my girlfriends and I share.   So I went and we walked nonstop for 4 hours.  I even had to go back and grab a pair of heels that called my name repeatedly after I left the store.   Once we sat down for dinner my body was screaming but I just muffled it with a very large Cocktail…

I have RA but I went anyway.  I have RA and I wear heels anyway.  I have RA but I am ME anyway.  Be you… not your disease. 

 

 

RA and caring for the elderly

I’ve been caring for my mother for most of my life but in the last 5 years her independence is starting to dwindle.   Of course some of this is due to aging and some of her own accord.  She’s 79 years young and some of her choices have come back to pay her a visit in the elder years. Unfortunately she’s not at the age where she could kick ass.  As a child no one messed with my Mom… Not adults, not kids…NOBODY… She even took a baseball bat to some kid who was racist bullying me but now she’s fragile physically.   Mentally though she’ll still whoop you good. 

Of course she knows I’ll be there for her but we didn’t see the RA coming.  As I’ve stated before Lupus made an appearance a long time ago and even though I’ve only had a few flares, those flares had me down on my knees… Now that RA is present, it changes the entire life game. 

My mom, she  still lives on her own and truly believes if she enters a retirement home, she’ll die before her time.  She is quite capable of taking care of herself until she starts over-medicating.  She’s the opposite of me, no tolerance for pain WHAT SO EVER… so pain killers have become her BFF.  This is such a difficult topic and issue to cope with, especially because I know what pain feels like and how prolonged pain affects everything else in your life.  She struggles and needs the medication but abuses it, over uses it and is dependent on it.   It’s tough to watch.  

 As I was sitting in the hospital with her recently, many of the hospital staff looked to me to care for her since they are severely under staffed.    They expect family to assist her with all of her needs and assist her with getting in and out of the bed.   There is also this underlining tone\expectation that her children should be taking care of her in their home.   So of course I have to explain several times over and over and OVER AGAIN that I am disabled myself, that I have RA etc etc…. I think I should wear a name badge… “Hi I’m Natosha, I have RA” or maybe it should just say “Beware I have RA”.  I get tired of explaining why I can’t do things.  I have thought of just saying “I’m not helping my mother because I’m an asshole and lazy as fuck so I’d rather someone else just do it”.   “Can you imagine the reaction?”  Could be amusing…

 I wish I was limited by my own choice and not due a medical condition.   Life would be easier.  I wonder how this will transpire; caring for my mother in last chapters of her life while taking care of my RA.  This shall be interesting. 

A poem composed in Emerg

Nothing is promised. 
There are no guarantees.
Everyday is a gift and so if you please, 
Fight for your life.
Fight for every moment. 
Fight for the love that keeps you moving.
Life is hard, so many barriers to burden. 
Life wasn’t meant for just rainbows and flowers.
It was meant to create thought and events to keep holding. 
Evolve your mind, body and soul and in the end hopefully you’ll achieve your reward of feeling whole.