On May 19th 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 24th 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 …
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
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.
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.
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.