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.   

Spoons

Spoons

If you look around yourself and really hone in on those surrounding you; are you able to see those suffering from a chronic illness?    The answer is probably not.    Most of those who are fighting a chronic disease look fine.  Great even.  Invisible fighters rarely look sick and people usually can only see what’s in front of them.    This makes no sense because most of us become overwhelmed with emotion when we witness someone suffering and prefer not to see it.    So…most people try to look their best.   Looking ill is depressing BUT we only empathize\sympathize with what we can see.   Catch twenty-two.  Sometimes we humans are pretty stupid.

When I was first diagnosed with Lupus, my husband raised a good point.   “I understand all the medical technicalities regarding your illness but I still do not understand what it is like for you living with disease”.  It was then that I started to research a way that I could accurately describe it.

I found “the spoon theory” written by Christine Miserandino.

https://butyoudontlooksick.com/articles/written-by-christine/the-spoon-theory/

She came up with the theory when her friend stated that same question my husband asked me.   So Christine tries to use a humanistic approach through using spoons as a metaphor for energy; to help her friend understand the effects of Lupus.   “The difference in being sick and being healthy has to make choices or to consciously think about things when the rest of the world doesn’t have to. The healthy have the luxury of a life without choices, a gift most people take for granted.  Most people start the day with unlimited amount of possibilities, and energy to do whatever they desire, especially young people. For the most part, they do not need to worry about the effects of their actions. So for my explanation, I used spoons to convey this point. I wanted something for her to actually hold, for me to then take away, since most people who get sick feel a “loss” of a life they once knew. If I was in control of taking away the spoons, then she would know what it feels like to have someone or something else, in this case Lupus, being in control” Christine says “when you are healthy you expect to have a never-ending supply of “spoons” {spoons being energy} But when you have to now plan your day, you need to know exactly how many “spoons” you are starting with. It doesn’t guarantee that you might not lose some along the way, but at least it helps to know where you are starting”. 

My husband would think that my evening ritual of reviewing and\or analyzing the next day’s routine and “to do” list was just my “anal organizational skills” or as he calls it “OCOD” {obsessive compulsive organized disorder} but it was really to figure out how many  “spoons” I need to get through the next day.  I sit there calculating “spoons” by the number of necessary tasks I absolutely have to complete in order to live life.  How many spoons does a spoonie use on a daily basis?

  • One spoon to get out of bed (worst part of the day)
  • Two spoons for lunch preparation.
  • Two spoons to shower all the parts, brush teeth, spread the lotion (this can take many more spoons depending on the day)
  • Two spoons for make-up, hair and dressing
  • One spoon for driving all day (I drive to my clients)
  • 8 spoons to get through a day of work. Overtime is extra spoons
  • 2 spoons for putting away dishes
  • 5 spoons dinner prep and cooking (another reason why I hate cooking)
  • 3spoons for cleaning up and washing dishes
  • 1 spoon for child’s homework and\or to play
  • 3 spoons to bathe child and prepare for bed
  • 2 spoons to complete any other household chore
  • 1 spoon for bedtime hygiene routine.

I haven’t included my child’s extra-curricular activities or notes written for teachers, extra homework, and\or play dates.   I didn’t add errands and\or shopping. Grocery shopping was entirely removed from my list for the safety of my husband’s well-being.  Friday nights would turn into Frightening nights and I was the nightmare.  First of all I hate grocery shopping period {there is nuttin fun or exciting about buying food} but once you add spoon absorption and pain to the equation… it’s deplorable.   I’d rather starve.  Then there is sex…. Sex does the body good… especially if you have spoons left over at the end of the night… if not… It’s literally go fuck yourself.  Unless you wanna just lie there then no spoons are required.  LMAO! {now that’s funny}.  Weekends… especially those spoonie parents need a shit load of spoons to get through them.   Days are longer and busier than weekdays.  Some spoonies nap to get through them and for added spoon bonuses.   The more you rest the more spoons you have.   I don’t nap unless it’s on a beach… I crash hard at the end of every day.  So on average it takes about 75 to have a basic functional day.

As of late, I’ve been short on spoons and therefore I reanalyse, prioritize and reorganize my “to do” list to fit my spoon collection… something I never thought I’d collect {spoons are not as enjoyable as shoes}.   I don’t even like them…

 

****Blog Picture – “Hammered Spoons by Heidi” was a purchase made to assist a fellow Spoonie in paying for treatment.    She is currently fighting for her life****

 

 

Laughing at the clock

Many would be shocked to hear that I hate my birthday.   I think the dislike came after my 25th.   The essence of time became limited and many deadlines came about.  Shit got busy and structured.   You’re always racing against the clock.  You never feel like you have enough time.   As we get older I find there is less time. AND  If you have children, there is even lesser time.   Our life expectancy is measured in time, years and birthdays.    So for me, birthdays are an indication that you are a year closer to your end date.  Yeah, I know… grim outlook. 

For someone who has such an aversion to aging,  I celebrate my birthday for weeks and with every important person available.   Hilarious right?  My theory is.. always spin a negative into a positive.  I use my birthday to my advantage.    Who can say no to you when you ask to see them on and\or around your birthday?  Not many…

The theory “age ain’t nuttin but a number” or ” its not about the number, its about how you feel”; doesn’t work for those suffering from an autoimmune disease.  We feel old all day, everyday.   Our bodies are old.  They crack, creek, snap and pop.  Get a few of us together, we could make some wicked beats.     We don’t look sick unless you open us up… and our organs scream “get off my grass”.  Then you know our bodies are old and miserable.   Just being diagnosed with an autoimmune disease shortens your life expectancy {scientific fact} ..so birthdays now are the “how long before I croak” reminder.   Its a scary thought, your life ending because a disease has the power to kill you.

Its because of that reason exactly that  I ensure I celebrate my day of birth.   I refuse to allow some disease dictate when and how and where I live my life and in what manner.   I refuse to allow this grim circumstance consume all of my life events and turn them into “I can’t moments” or “I’m too afraid” pity parties.  I need to continue to make memories.. feel good moments.  Everyone deserves happiness.  Everyone deserves to laugh.   Laughter is a great cure.  It’s an amazing pain killer and so I try to laugh as often as possible.  

Laughter is very present on birthdays when surrounded by your favorite people and so every year for mine, I gather those who are my “feel good” people to celebrate with me.   Most of my friends and close family members are younger and I read that hanging out with younger people helps you live longer.   I like this.  I now have another excuse other than an “immature mentality”{which also keeps you younger} to hang out with “the youngins”.  We get together, we bust balls {insults}, we laugh and we make memories.   I ensure that I take the time to cherish my life because in the end the clock won’t mean shit.  I also stay younger by being as silly and immature as possible.   I quote Eddy Murphy often {delirious and raw}.   Anything and everything to do with gas … has me in stitches.  I have a trucker mouth cause cursing just adds flavor to every story and I find it fun.   During these  precious times.. I forget that I am sick and for those few hours, I am pain free and just living.  

 

 

 

 

 

 

 

The Brain Fog

I’m making soup for my daughter and hubby.    I rarely cook so this is a big deal.   I cut the veggies.   I add my spices and broth and note that I need more broth.   I walk from my kitchen to the pantry which is literally 15 steps, open the pantry door and…. my mind is blank.   I walk back to the kitchen.   Then I remember the broth so I walk back to the pantry, open the doors AND blank…. I can’t remember shit.  I walk back to the kitchen, remember I need the broth… scream out FUCK!!!  Almost run to the pantry while the thought of broth is still on my mind, open the doors and grab the broth in a panic.  FINALLY! Task completed.   It only took 10 fucking minutes. 

Welcome to a day in the life of Brain Fog.  This is asshole Brian Fog who enters everyone’s life at some point… {usually due to sleep deprivation or when the age monster is comin to get ya} however for us Invisible fighters {autoimmune diseases suffers} this is an everyday occurrence.  Brain fog is not a medically recognized term but is a commonly used phrase that sums up feelings of confusion, forgetfulness, and lack of focus and mental clarity.

Brain fog happens to the average person who is lacking sleep. When they catch up on sleep they’re back to normal brain power.  We Invisible fighters… towards the end of the day or on a day where we are struggling, most of us can’t even finish a sentence without forgetting what we’re saying, and\or stuttering.   Brain fog is basically what it sounds like; it’s fog in your brain that is clouding your thought process and disturbing your communication skills.    Many times when I am in the middle of a session with a client where I am on fire with providing great suggestions or challenging them regarding their own insight, all of a sudden I can’t get the words out.   Out of nowhere I appear to have a speech impediment and\or language barrier.  In that moment I just want to scream “I know the English language, I swear!  My brain is an asshole with a dark sense of humor!”   I’ve had friends and family members make fun of me and\or correct me.   BUT that stopped after they got the “don’t fuck with me “look and\or the “how the fuck can you be so insensitive” speech. 

 I have now created my own language; “pass me the thingamagigers… I need the whatchamacallits… those thingies”… also pointing and moaning has become quite common.    My admin assistant has learned to speak my language fluently.   It’s quite accommodating and refreshing.  My husband still needs practice.

If you are a great communicator, this is very frustrating.   For me, I take a great deal of pride in being able to reach others through communication. I have a gift where I am able to connect with others using my words.  When I can’t speak because I’m stuttering or forget what I want to say, I feel stupid and uneducated.   It’s extremely embarrassing.   I feel as though the disease is not only taking over your body but it’s also mocking me through fogging up my mind. 

This happens because of chronic fatigue but there are other reasons for it as well.  The average person who is suffering from a chronic disease doesn’t get a lot of sleep.  That sleep is disrupted by pain.  In dealing with the pain on a daily basis, trying to ignore the pain, and\or trying to cope with the pain also causes brain fog.  When you are in constant pain you give off a hormonal response that triggers your endorphin’s.  Your endorphin’s are a short term pain killer but if you’re in pain all day eventually those endorphin’s wear out and you produce another hormone (cortisol) that can make you quite angry when high levels are made.    Just ask my husband…. I have become quite the angry woman since Mr. Lupus and Ms. RA made their long unwanted visit.   

Several of my friends have now noticed when I hit my “wall”, the brain fog wall.  It is infrequent and illogical.  I don’t give much notice.  All of a sudden I am disrupting my husband or whomever I am with stating urgently that I need to go and NOW.  At this point; I have nothing left in me, no spoons {another blog to come}, no patience, and no mind.  I cannot process anything and therefore need to shut down.   There’s no real warning sign, you go from tired to non-functioning.    So if you ever met someone or are with someone who suddenly takes long pauses when speaking and/or stutters and/or mispronounce words, the Brain Fog may have taken over or they may just be an Invisible Fighter…. I actually think of them as Invisible Hero’s

 

Self-Pity in Chocolate

Peggy Bundy had it all figured out {the show…married with children}   Do nothing…   No housework, no cooking and no cleaning {well I can’t do that…seriously not possible}, while lying on the couch in front of the television eating Bonbons.   This is my kinda party… the pity party. 

My pity party is a private party for me, myself and I.   It consists of comfort food; chocolate, popcorn, chocolate, and sometimes ice cream  along with a complimentary box of tissue.  There’s no alcohol at this party and\or other substances {plus my addiction or substance preferred is shopping…retail therapy… which is my husband’s worst nightmare}.  Strictly water is permitted and encouraged to replenish the water loss from the waterworks eye show.  

 This usually occurs after I have suffered for several days consecutively and that one morning…simple tasks are  just extremely difficult and utterly frustrating.  I then know this is going to be a bad day.   I’ve been fighting hard but I just accept that Mr. Lupus and Ms. RA have won today.    So I put on my “fake face” for my daughter and see her off.    I go back to bed and sleep until the early afternoon, then move to the couch with my comfort food, water and tissues.  I watch all my sappy shows {This is US … sooo fing good} so I can ball my eyes out.   I’m not talking that cute cry with big sexy like tears.. like in the movie…looking all sultry and shit.  I’m talking the big nasty ugly cry… eyes swollen; nose running snotty face …where people would be afraid to approach you even if they were able recognized you. 

The pity party is therapeutic.  It’s a time to cope with all the emotions you’ve been pushing back and under the rug for the last several weeks.   It’s a time to allow yourself to have a “real “moment where you’re not putting on a front or a show.   This is where you feel your real emotions of resentment, anger, pity… It’s the “feel sorry for yourself phase”.   Not only is it OK to do this.   You NEED to give yourself permission to do it.    For me, these pity parties are essential for my mental health.   They give me the strength to move on and continue my “mind over matter” strategy.

A couple of hours before my family arrive;  I get myself together by putting the tears and self-pity away.    I start my “ positive self-prep talk”.   I remind myself that everyone has a story and mine could be much worse.   I could already have hands that are disfigured.  I could already be crippled instead of it just being a risk at this point.   I remind myself that I’ve been fighting my ass off  and have more points on the score board then Ms. RA and Mr. Lupus to date.  I remind myself..I AM winning!.. and today is just another indicator of that.  I also thank myself for the emotion cleanse and remind myself that I deserved this day BUT tomorrow we are back to KICKiNG SOME ASS. 

So enjoy your pity party.. and get the good chocolate.   Bad chocolate just makes you feel worse. 

“Tired”

I think everyone at this time of year can relate to this; FEELING TIRED and ALWAYS being tired.  

Every morning when I wake up, the first thing I say to myself, “I can’t wait to go back to bed tonight”.   I am so tired.  Pretty much ALL of the time.  I can remember working my multiple jobs, partying my ass off and returning to work after 4 hours or less of sleep; and not feeling A THING.  I was perky and springy as hell.  NOW if I stay up past midnight, I have the worst hangover even though I did not partake in any substances… except Advil.  Advil is my best friend.    

You can contribute it to the time of year.   To the weather.  It’s certainly the grey ass skies… day after day and every day for months on end.   It’s working and dealing with the pressures at work.  Its stress.  It’s lack of vacationing.   It’s raising a family.  It’s financially budgeting, and it’s a thing called ….LIFE.   Life is wonderful and mesmerizing, although it is VERY challenging.   I have this exact conversation with my friends all the time…  Where we question; is it more tiring because we’re older?  and with age comes aches?  Is it because we have a shit load of responsibility? Or is it because of autoimmune diseases\chronic illness\health related issues?

When you Google tiredness; Rheumatoid Arthritis rates 5thout of the 10 top reasons for tiredness.   Depression rates 4th.   Anemia rates number 1 and Chronic Fatigue rates the 6th reason for being tired {I find this an hmmm… moment because most autoimmune diseases cause chronic fatigue}.

As we get older, we get busier.  Since we a busier, we’re tireder??   LOL {I know that’s not a word… I like to use my rhyming skills}.   We plan everything {ok fine!!… not everyone plans everything.  I plan everything about everything for everything…so what? }.  

The reality… we live a fast paced life.   We race against the clock… every damn day.    We run errands on our lunch, in between appointments and on the way home from work.   We rarely have time for ourselves.  We rarely watch shows at their appropriate times because we are too busy doing something else and we can PVR {record} it.   We don’t even shop in stores anymore, we buy everything online.  WHY?  Cause it’s more convenient and because we don’t have the time.   Although, it’s really a catch twenty-two because we spend more time staring at a screen and\or smart phone where we get instant gratification which also causes TIRED BRAIN.    A great majority of us are busy with children and all of their activities.  We have them in so many things to ensure they have several opportunities to explore themselves that we lose their cues of telling us they just want to stay home and play with their toys and\or outside with the neighborhood friends.  AND we do this until we have empty nests and\or retirement. 

We have all know what we need to do for more energy….

  • Drink 8 glasses of water daily… I try but it’s hard to do when your mouth is open all day because you have to speak to people constantly.
  • Exercise… ummm ya but it’s a vicious circle. Who wants to exercise when you’re exhausted; especially us chronic illness sufferers.  I suggest  starting as a  last minute decision when you have a day\evening when you’re feeling generally OK.  I swim.  It takes the pressure off my joints, doesn’t hurt during the activity, it’s a cardio\resistance exercise and it’s my serenity.
  • Take Vitamins… Vitamin D does wonders. I swear by it!!
  • Sleep 7 to 8 hours… This is another catch twenty-two. We work late; we make dinner, we have chores at home that need to be done even if they are the bare necessities to function.  If we have children, we support them through homework and bedtime routine.    For me, once I complete all my chores {and for those who know me… I actually do leave some chores … not many…but I do}, ME time starts very late so I’m not getting to bed until later.  Me time is essential for my mental health.   If I don’t get some ME time, people do not like me.   I am one nasty, resentful biatch…and scary too.   There’s also partner time to factor in. 
  • Eat well… blah blah blah… we all know this. We all try to do this… but chocolate or whatever is your pleasure is just sooo damn good.  AND a drive thru is convenient isn’t it.  

There are a number of things we can try to do to get more energy.  The brutal truth though… we need to change our lifestyle in most cases.   In order to do that, you have to make life changes that are easier said than done.    We live in a Society where money is key.  Everything costs money…every freak’n thang.    I for one, am willing to make some of those changes.   I’m tried of saying “I’m tired” every time I’m asked how I’m doing.   Aren’t you? 

” Care of Self”

Written  between Jan 27, 2017 and Jan 29, 2017

Its 220pm.   I’m sitting at my desk anticipating my 3rd and final biweekly infusion that starts at 3pm. After this, I go every 4 weeks.    I am anxious.  It’s odd; I’m generally not an anxious person unless it’s about cleanliness and organization.  I truly despise dirt and untidiness.     I’m not afraid of needles.  The IV pain is tolerable.  Why am I anxious?  As I ask myself “why?”, my eyes tear up.  My inner voice says “because this is fucked up!  That’s why!”    I guess I haven’t really come to terms with this.  I feel good in between infusions but the day of… I’m antsy, unable to focus and quiet {not me at all…I’m quite loud}.

Recently, when I was explaining an infusion and the process to a close friend, she said “This treatment is your own form of chemo”.   That really sunk in. It really hit home because chemo is a therapy used to keep cancer at bay and put those people affected in remission.  The use of infusions… same goal.   Once again, I think “how the fuck did I end up like this?”

When I take emotions out of it and stick to just logic, I know that I have contributed to this in some manner.  I started working at the age of 13.   By the time I was 18, I had multiple jobs.  When I was 20, I had  5 jobs while attending College fulltime and this continued until 31 years of age.  Why?   I grew up in the system on welfare. I had to start contributing financially or my mother would lose her housing subsidy.  I refused to be a part of that world, so I hustled.   For 10 plus years my average evening of sleep was 4 hours.   I rarely sat down to eat.  I wore 5 inch heels for 12 hours daily {greatest days of my life.. sorry I haven’t mentioned my shoe\heel fetish.. 300 pairs of shoes.. that’s another blog to come :P} and pushed myself every day to the limit.    By the age of 25, I had stomach issues and 2 significant bruises on my right arm.   I was told the bruises were eczema.   I didn’t question it further.   I was young, invisible and had no concept of self-care; one of the only moments that I regret.    I don’t regret the hustle and the life experiences it gave me.   The reality is I wouldn’t be where I am today if I didn’t hustle.    Since I left my mother’s care, I have never needed any assistance from welfare.   I got out of the system.  One of the greatest accomplishments in my life.

I do regret my lack of knowledge and\or care for my physical being.   When the stomach issues started I was told, take breaks, eat while sitting down and get more sleep.   I didn’t.   At the age of 31, I knew those bruises were more than eczema.   I was getting married and wanted them gone.   Well my dermatologist did his job and discovered\diagnosed Mr. Tumid Lupus.    Mr. Lupus had made his mark on me since my middle 20’s, and I went years without treating him.   Again, I don’t regret the hustle, but I regret not listening to my body.  I regret not taking the advice to slow down a bit.   I regret not sleeping a little bit more.   Now…I know my body inside and out…lesson learned.  I know it so well in fact, I knew I was pregnant with my little Bum Bum {daughter’s nic name} within hours of conceiving and 1 1\2 weeks away from Auntie Flow date.   My doctor thought I was insane…

The reality is… self-care is important.   Work-Life balance needs to be front and center of all of our lives.   Stress causes 99.9% of disease.  North American’s are the leaders in autoimmune diseases, cancers, heart and stroke.  ” Why?”  Because we live to work.    We spend less time on self-care, appreciating family, nature, all in all…life really.   We don’t smell the roses, instead we count money and it’s literally killing us.   I still work a fair amount… that’s the world of Child Welfare\Social Services.   BUT I am very disciplined in my life-work balance.   My family comes first- no matter what.   My health comes first- no matter what.   I do not work at home once I get home from work.   When I am sick – I am sick. I stay home and care for myself.   I take every day off that I am privileged to have and I ensure I do things that make me happy {shoes, travel, shoes, movies, ummm shoes}   I laugh as much as possible.  I make myself go out even when I have feelings of isolation and depression.  I surround myself with those I love and who help keep me afloat.  I get rid of the negativity… including people.  I want to live as long as possible and in order to do that,  I need to live…not work.   I need to care for myself before I care for anyone else.  How do you care for yourself? Really think about that question.   You may be surprised with your answer…

“The Permit”

I might not look sick but I am.   I might not look disabled but I am.   I have an invisible disability.   I can’t carry more than 5 lbs in my hands… so I have a disability  permit.

Can you imagine the stares, and dirty looks I get from others?   I’m not even going say “don’t judge a book by its cover”.    We all  know that we shouldn’t judge but we do.  Its human nature.  Every time someone passes us, comes close to our space – in our head we’re judging, we’re thinking  “WTF are they wearing?”  “love that purse” “she’s pretty” “he’s ugly” etc..  That’s the truth…is it not?   The difference is we tend to use our filters and a great deal of this judging is in our heads.   Myself.. I happened to make a career out of it… I became a counsellor.   I get to judge people all day long and hear myself speak…What a wicked combination.

I am judged because of the permit on my windshield.   I get the nastiest looks.  People even walk extremely close to my car when I’m parked in a spot to make sure I have “the” permit.  When I first got it, I had this older couple walk past me and say “it’s probably for one of her parents, shame on her, they would be so disappointed”.   My reaction….I TOTALLY lost my shit… I grabbed my permit out of the window, walked very aggressively towards their car and yelled “THIS IS MY PERMIT!!! DO YOU WANT TO SEE MY ID? LOOK ITS RIGHT HERE!!!”  I scared the living shit out of them.  They didn’t even respond.  They got into their car and took off.   So not only did they think I was a bad person, they also thought I was crazy as shit.   I’ve been told that I’m intimidating… I don’t see it.   LOL.

My girls and I travel to the states every year (this tradition has been put on hold since Jan 20, 2017) and my permit can travel with me so we take it.  Even one of my girls feels awkward about “the” permit and pretends that she’s physically challenged by limping  as we walk to and from the car, even though the fucking permit isn’t even hers.   I just shake my head and laugh my ass off.  I’ve explained more than once my permit is legal and it’s my right but with me not appearing disabled it makes others uncomfortable.

I’ve been told that I’m “lucky” because I get prime parking.  With comments like that, in my head I hear a talk show host saying “because you have a dual autoimmune diagnosis, you get a permit! The ability to park in prime spots! For the rest of your life!”   It is convenient, don’t get me wrong.  I am thankful however in order to qualify for it, you have to be disabled in some form.  So it doesn’t seem like much of a prize.

I hate being disabled.  I hate not being able to use my hands.    I have adapted though.  I carry everything with my forearms now.   I grab a shopping cart every time I shop so I don’t have to carry my purse.   It weights a ton…. You know how some women are… they carry everything in their purse from make-up, sewing kit,  to Tide on the go.. Yup..that’s me …I’ll admit, I carry my house in my purse.  The permit does make errands easier.   At times, I am bothered by all the judging, so I joke about it.   I make light of it and wear high heels {I refuse to give up the heels} on purpose to really screw with people’s heads when I park in the disability spot.

I have even been stopped by the police… twice.   The first officer just wanted verification the permit was mine.  The second officer wanted to not only verify but also wanted to know why I have it.    I responded with  “Officer, we both know that your question goes against my Human Rights BUT I want to educate others.  I have severe RA and Lupus”.  I further explained my invisible disability and he was very receptive and thankful for the lesson.   Since then,  I have taken the approach… well,  it really depends on the day to be honest… I still give the people with the scrunch up faces  “the” finger, at times. {LOL}   On most occasions though, I try to engage others to educate them.

I come from the mindset that everyone has a story and not all stories are visible.  Most of our society has not recognized this as of yet.  So when I’m in a good mood and have the patience, I will answer questions and educate others.  However many a time, I am of the mindset of “ yes,  that’s my mother fucking permit.. soo back off”… using my inside voice… Of course.  😛

Who’s got your back??

Written  on Jan 22, 2017

It’s been an emotional roller coaster this week.   With Trump being sworn in and Obama leaving, the incredibly massive women rights march, and a surprisingly unexpected starting of a significant relationship that will now become a long distance one.   With emotions that are global and some personal; it feels as though a whirl wind has entered my body and stirred up an emotion party. 

Even though I am Canadian, I am afraid with what Trump might have in store for his Country.  I’m not going to lie nor pretend that I am not concerned for my geographical neighbors or that I’m not concerned for us, Canadians.     I am an extremely empathetic person.   I love mankind and feel for all those who suffer and are enduring hardships.   My demeanor, the tough exterior I play, is my defense mechanism.   It protects me from becoming a puddle and allows me to function.  My mother and father both, were activists in the civil rights movement, and with being an interracial couple this caused them to experience many defeats.   BUT they didn’t give up; many during that time stood for civil rights and won.   Yesterday’s show of inclusiveness was abundant.  It was overwhelming and enlightening to observe; all races, genders and creeds standing up for all women.  People all over the world took a stance against the recent threats made against women, their values and most importantly their choices.  It was one of the most powerful events to witness.  This triggered many  occurring events in my life, decisions I’ve made and it made me think of the relationships that surround me. 

In my 43 years of life, I have pondered the meaning and evolution of  my relationships often.   I have come to the realization that each individual has a different definition of relationships and in that,  there are no errors…. just differences.   Everyone that comes into your life whether it be short-term, long-term or for a quick moment, has value.   The purpose is for you to take that value and apply it as a lesson to enhance your being.    As I evaluate my relationships, I realize that each relationship has its own function,   and that my expectations in that relationship are my own and I cannot compare nor transfer those expectations unto others or presume that because I am the common denominator in those relationships that each one will function the same.

When you are chronically ill, it changes your relationships.  You begin to assess every relationship based on loyalty, understanding and support.   Well…understanding a chronic illness is difficult especially when it’s invisible.  Most people cannot understand what they can’t see.  This sets them up to fail.  Unfortunately it is up to you whether or not you allow them to experience your vulnerability.  You will have those relationships that will hold you up without you needing to ask and you will have some where asking for the support is a perquisite to receiving it.   You will meet someone who you bond with immediately and some you can’t fucking stand at  just one glance.  You absolutely will have loved ones who will need to hear how you are every day, and some that can’t deal with your pain. 

  This is life, take it at face value.  I have many friends that only have to look into my eyes and know that I am full of shit about my pain and many that have no clue.  Although… I do have to acknowledge that every single person that I have allowed into my life would have my back… all I have to do is ask.  They would do anything for me and love me in their way.  

You cannot get through life without love, support, and acceptance.   You cannot deal with your disease alone.   If you were to assess your relationships in this exact moment… who’s got your back? Who would stand for you?   Who would march for you?  If you can name one… one can be enough.   If it isn’t… find them. 

Knoweldge is Power and something to Ponder..

The facts: Approximately two million Canadians are affected by an autoimmune disease currently.  The autoimmune disease definition; a disease in which the body produces antibodies that attack its own tissues, leading to the deterioration and in some cases to the destruction of tissues.  “Soo in my terms..Basically your body is beating the shit out of itself.. just cause”.

There are approximately 200 autoimmune diseases known to the medical world thus far.

Here are the top 5 autoimmune disease trends in Canada currently:

Lupus “Mr. Lupus as I like to call him. First cousin to RA, the one cousin  you don’t really like but are obligated to talk to at family functions”. 
This autoimmune disorder attacks healthy organs and tissues, including the joints, skin, blood cells, lungs, heart, kidneys and brain. There are also several different forms of Mr. Lupus. 90% of people with lupus are female, and the disease typically starts between the ages of 15 and 40. Those females especially impacted  include women of African, Caribbean, Asian and Aboriginal descent.
Rheumatoid Arthritis – “Ms. RA .. My invisible pet…who likes to follow me around all day, trying to get my attention with flares ups and  other annoying  attention seeking behaviors  but no one else can see her so I’m labelled a hypochondriac or a bullshitter”. 
In rheumatoid arthritis (RA), the immune system attacks healthy joints and the surrounding tissue, leading to inflammation that causes pain, swelling and stiffness, and may limit mobility. Typically, people with RA experience ongoing symptoms, plus spikes of disease activity (“flares”) alternating with quieter periods. The disease causes progressive, permanent damage, especially in the hands and feet. It may also cause fatigue and affect other organs. According to The Arthritis Society, about one in 100 Canadians has RA. It most often affects people in middle age, though it can begin at any stage of life.

Multiple Sclerosis
Most often diagnosed in young adults (ages 15 to 40), multiple sclerosis (MS) is a complex, unpredictable and progressive neurological condition. It develops when the immune system attacks the nervous system, causing inflammation and damaging the myelin sheath that protects and envelops nerve cells in the brain, spinal cord or optic nerve. Canada has one of the world’s highest rates of MS. Women are three times as likely as men to develop the disease.

Crohn’s disease
Crohn’s disease involves inflammation in the gastrointestinal tract, and may affect the large or small intestine, rectum or mouth. The causes of Crohn’s are not known, but factors may include genetics and environmental factors. It most often strikes people between the ages of 15 and 35, but it can start at any age.

Sjögren’s Syndrome
With Sjögren’s (pronounced “SHOW-grens”), the immune system attacks the glands that make tears and saliva, eventually causing them to stop working. This causes dry eyes and mouth, which can be very uncomfortable and painful. Sjögren’s syndrome can occur on its own or as part of another autoimmune disorder, such as lupus, rheumatoid arthritis or scleroderma. It’s estimated that 430,000 Canadians live with Sjögren’s.

The causes for AD’s are unknown and there are no cures to date. The medical world of researchers speculate that genetics, environmental factors, processed food and STRESS  are significant precipitating factors that contribute to AD’s.  North America is the leader in its population of developing AD’s and this continues to rise.

Is it really all that surprising when you compare the North American society and life style to the lifestyle of Europe, for instance?  “It isn’t really, is it?” …if you’re honest about the way North Americans have chosen to live and what they have chosen to prioritize in their life.   North Americans are living to work whereas  Europeans; they are working to live. That in itself is a big statement and another future blog.

The reality is AD’s are the 8th leading cause of death in women across North America. Heart Disease is the number one cause of death in women. In most autoimmune diseases, a year after being diagnosed; the risk of heart attack and stroke increases to 60%. “Sooo… that woman who died from a heart attack who may have had an underlying AD didn’t die from the AD per say but the AD may have caused it”.

“The fact remains… we are seeing a decrease in infectious decrease but a significant increase in autoimmune ones,  now that’s something to ponder.”

photocredit\blenda from the web                                                                                                         facts from websites; WebMD, www.lupuscanada.org, www.arthritis.ca, https://rheum.ca,www.healthlinkbc.ca,  www.besthealthmag.ca, www.healthycanadians.gc.c