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 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 

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. 

Depressed … Who Me? 

I think it’s about time I admit it.   Yes, I am depressed.  I feel lost… for many different reasons.   I am now in my mid 40’s.  I am scared to death of getting old and what that will bring on all levels but especially with the autoimmune diseases.   I’m already nasty when in pain.  “Lard… help the children in our neighborhood during that time period”.

 I’ve had to terminate my goals of higher education because I physically can’t do it.   Mr. Lupus and Ms. RA will only allow me to do so much in a day… My career goals are on hold because again I can only do so much and right now I have to focus on staying in remission.    YAY!  Such ambition… stay in remission…  I know for many of you, this would be a significant achievement.  It truly is.   I’m just so use to accomplishing goals on so many different levels. It’s tough for me to be stagnate. 

Now I hope that the word “depression” hasn’t sets off alarms in people that know me.   Depression comes with this autoimmune territory.  It comes in waves and in stages.   There is also a big difference between situational depression, chronic depression and a chemical imbalance.  This is situational depression.  The term and the emotion “depression” shouldn’t be scary. There shouldn’t be this huge “gasp” knee jerking reaction when you hear the term.  Life in itself can cause depression.   Significant changes in life can cause depression.   Losing a loved one through death and\or heartache causes depression.   Being broke causes depression.  There are many many many situations and circumstances that can cause depression.   Life is depressing sometimes!!  Life can really suck ass and make us feel like shit and that’s DEPRESSING and guess what?  It’s common. 

Be concerned when that depression stops you from living.  Be concerned when that bout of depression is more than just a time out away from life.   When you’re having trouble getting out of bed, taking care of your hygiene and you’re missing lots of work\events… maybe it’s time to seek professional help.   If you are thinking suicidal thoughts and\or thoughts of self-harm, please reach out to someone… you are not alone. 

I am getting up every day, functioning in my roles (wife, mother, daughter, friend, counsellor) and being part of society.   I am laughing and trying to be happy but there’s something off.   I do not know who I am anymore.   Who have I become?  Where has that fun, silly, energetic, thriving person gone?   I know that the wife, mother, daughter, friend, counsellor in me is present and I’m fucking fantabulous in those roles  but  the ME is suffering.   It feels as though the RA and Lupus have taken over.  They control my life.  Everything is scheduled around medication, pain and mobility.   My ambition, my goals, and even my outlook on my life depend on my pain threshold.   It’s maddening…

So as I sit here in my room of shoes, my tranquil room (side note “who would have thought the smell of leather and stinky feet would calm me”) reflecting… I come to realize that waiting for the pain to back off or take less control of my life is a waste of time.  I need to find a way to work with it, and to work within it.   The pain will always be there.  It’s may subside but it is a part of me now.  This is my reality so I might as well stop wishing for it to go away completely and ride it.   So I’m going to push through it. Swim anyway.  Dance anyway.  Live anyway.  AND when I’m tired and the pain is intolerable then I rest and do it all over again…

No single sufferers here

It’s amazing at how much our diseases consume us.  There are times when we only can see our own hands in front of our own faces.  At times we get so caught up in our own suffering that those “non-invisible fighters” become invisible to us.   Being a true invisible fighter also means knowing when to put your suffering aside to prioritize a need of another. 

  It feels as though I rarely see my “go too peeps” anymore.   I only have a select few that I bare my soul too.   So when I have the chance to catch up with these people I ensure that my soul “gets naked”.  Let it all hang loose, laugh, cry, fart, laugh hysterically, put the kids to bed and start again.    

I went to see one of my dearest recently.   We arrived and I wanted so badly to tell her how lost I’ve been feeling but when she looked at me in her foyer I knew that she needed me this time… So I put the lost me aside and enveloped her in the support the best way I knew how… I just listened.   She needed someone to lean on.  She needed to be pulled from the dark and I was able to do this for her.   Why? Because I am not the only one suffering.  Because I know that there is more to me than my disease.   Because I know that I can put my own heartache aside for someone I love. Because THIS… this exact moment of helping another in need is important, setting a side your own needs to prioritize theirs is what makes the world go round.   I strongly believe you only get what you give.  I know that I cannot live this life alone and I would never leave someone alone to live it…

It’s really challenging at times to come out of your own grey cloud but you have to.  You are more than just your pain; you are more than just your disease.   You are more than your depression.  Caring, loving, helping and assisting is a way to show yourself that it hasn’t consumed you.  You ARE still a selfless lovely human being… There are no single sufferers in this life…

Balancing Act

How many times do you hear “take care of yourself”?  How often do you hear from your medical professionals that in order to be well you need to follow a self-care regime?   How accurate am I when I say you sacrifice your health regularly for loved ones?  In all honesty, how much of your needs do you put off for others? 

If you have characteristics like me balancing your needs with the needs of your loved ones becomes a daily juggling act.   Being chronically ill doesn’t make me put myself in front of others.   I find myself putting off my own needs and\or struggles for others every day.  Even today, my mother needs something and my daughter wants to see her Gaga (grandmother- my mother) so I am putting off swimming (my medically ordered exercise for my RA) again.   This has turned into a regular occurrence and I know I am not the only Invisible Fighter (autoimmune\chronic illness sufferer) that does this. 

 Daily we have to balance whether or not we take the much needed nap or play with our kid.  Do we exercise or run errands for our elderly parents?  Do we take our meds and rest to decrease pain or do we take more pain killers to go out on that scheduled social outing?   In most cases I chose the latter.   Unless I am in absolute bad shape.   I know the fragile line of not putting my needs first, my condition will worsen and my family will suffer.  I walk that tight line…that tight rope consistently.   I’m quite aware if I do not take care of myself, I can cause more damage and/or end up in hospital.  AND unfortunately I am willing to risk this so I can care for others.  

So where do you draw the line?  How do you take care of yourself and others?  What do you do with that guilty thought of “am I being selfish?” when you do put yourself first?  Well… you start with identifying your triggers.   What can’t you say NO too?   What CAN you put off?   WHO can you say NO to?   You might have to take that big step and admit to family and friends that you cannot do everything. You might just have to communicate that you’re suffering in that moment and need to make the time to heal yourself. 

Balancing your needs against the needs of others… this is not an easy task.  Putting “you” first and saying “no” is incredibly hard.   THIS is work in progress for me.    I have a young child, an elderly mother, and both are extremely needy.   I have an amazing husband who would do anything for me, however he is a procrastinator.  A MAJOR procrastinator.  Soooo things will get done either in 3 days, 3 weeks or 3 months.   With me being an organized planner… this drives me absolutely insane and can cause World War 3.   Therefore, I have to be in pretty bad shape to ask him to organize anything. Truly…desperate.

 I suck at putting myself first.  It’s not in my nature.  It’s not who I am.   I always put others first, especially my loved ones.  If you need me, I am there… always.  I’m like a 7Eleven…open 24\7… packed with fun snacks.   I miss swimming often and I don’t take naps.  I pop Advil until I crash.  It takes crashing for me to stop.   It takes excruciating pain for me to put myself first.  It actually took a biologic infusion (IV therapy) to get me to think.   What would happen to my family if I were to deteriorate to the point of non-functional?   What would happen to my family if I couldn’t work?  Where would my friends and family be if I had a stroke and\or heart attack because I didn’t take care of myself first?  How would my loved ones feel if I died because I neglected my needs?  Prioritizing self-care is not selfish, even though it feels that way.   How can you taking care of yourself be selfish when the end results means you can continue to do for others? 

There is a way to balance your needs along with the needs of others…say “no” often.  Say “not right now” a lot.  Say “I need a day” once in a while.  Say “I need to do me” as much as possible.   

A Poet

No energy to care

You wake and you feel it in your bones.

The desperate wanting for a good day.

The feeling of positivity overcoming you as your feet hit the floor,

But recognizing it’s only the exhaustion that lives within. 

You close your eyes and say “fuck you I don’t have the fight today”.

So you drag yourself to your first cup of coffee and realize “I don’t have to fight THIS every day”.

“I don’t have to choose fight or flight every single day”.

 I can be neutral.  I can do nothing.   I can be nothing. 

I can fight for nothing and want for nothing for one whole day

And just be…

2 steps forward, 1 step back..

There will be several precipitating factors that determine how you’re feeling.   The weather and barometric pressure, the sun and how long you’ve been exposed, how much restful sleep you got, whether or not something and\or someone stressed you {short-term or long-term situations both contribute significantly}, the common cold, and most importantly your mind-set.  Feeling well is not simply based solely on medication.  This expectation will set you up for failure.  There is no wonder drug unfortunately…. or I would be popping it like candy!

This week was a struggle for me, as I’m sure many “spoonies” were feeling the same.   The inconsistent weather, this beautifully warm one day and cold as fuck the next is literally an autoimmune disease sufferer’s nightmare.  Your joints and muscles have no idea how to adjust to the barometric pressure so then they just get pissed off… and fight back.   It’s like Ms. RA and Mr. Lupus engage in an argument that turns physical except you’re the victim they attack.  They beat the living shit out of you, wrestling you down while you’re trying to fight back, but tapping out and giving up seems like the better option. 

This back and forth and up and down is sooo discouraging.    I was on a roll.   The infusions were working; I had little to no inflammation in my joints and no pain, so I started swimming again.  2 steps forward.  Then BAM… caught a cold that turned into a chest infection.    I can’t take my weekly self-injected methotrexate when I am ill.   So I lost a dose of meds which in turn makes me feel like shit.   I can’t swim, let alone function for the entire day…… 1 step back.   These are the days I want to give into the disease, throw in the towel, and just give up the fight.   I’m sure many invisible fighters just want to stop … and do.   They start making poor food choices, no longer exercise and\or socialize.   They barely leave their homes and allow the disease to fully take over.   If I were to give in to this disease, which does seem like the easier choice at times, I wouldn’t be me.   AND this is exactly what I remind myself during the lowest points…

Yes!  It sucks ass that I couldn’t swim today or haven’t swam for days, but I made it to work.   Yeah… I couldn’t wear the dress I wanted because putting on tights or nylon’s cause excruciating pain, but I walked up the stairs.   Absolutely, It fucking blows that I can’t dance and shake my ass all night, but at least I did for one or two songs with one of my BFF’s  on her birthday.  AND at times it’s absolutely devastating that I can’t run, play and chase my daughter around the playground, but I walked with her there, watched and laughed with her.  I even pushed her on the swings for a few moments and  that will be apart of her memory forever. 

Be an optimist; Someone that knows taking one step backward after taking a step forward isn’t a disaster, it’s the Cha-Cha.