Three Pricks, Pretty Shoes and an Infected Tattoo

I view myself as a badass. I am ready to fight at any given moment. Whether it’s my autoimmune diseases or a cold. A full work week or some conflict that may unfold… I’m on it. Not because I win every time but because I always get back up.

Especially in fighting Mr.Lupus and Ms.RA, I’m a Ninja. I can totally picture myself putting on a Prada black n fushia blingy ninja warrior body suit. I’d have swords or nunjucks and I’d Ninja the shit out of everything … Mr. Lupus and Ms. RA would come to attack me and I’d Ninja the shit out of them with backflips and high kicks …screaming with determination like MJ does in his “Scream” video. Ahhhhhhhh!!!!

And after I’ve won the battle, I’d limp home, take a 600mg Advil, Epson salts bath, then straight to my bed. That’s right…I’m a badass.

These last few weeks I’ve lost several battles. Not because I didn’t fight well but because I let my stubbornness and pride get in the way of listening to my body.

I was tattooed during the very end of a Lupus flare in the greatest heat wave of the summer and then threw a BBQ the next day. My new ink is on my inner bicep and inner elbow. The easiest place to get infected. I just thought I was such a pro at tattoo healing that I would cover it with a cotton sleeve and be good to go. Well… I forgot that my kitchen is three floors and three steep staircases away from my backyard. I also forgot the fact that I would be going up and down and up and down and UP and DOWN them …for 8 straight hours!! … Nor did I think it was an issue when I had a water fight or when the blood soaked through the cotton sleeve… Yeah … That’s right … I’m brilliant…* insert eye roll*

Not only did the tattoo get infected, Mr. Lupus decided to attack it as well. I am now suffering from a significant Lupus flare that I haven’t had in years…Brilliant…right??!!

This battle knocked me to my knees.. literally. Many moments of tears and feelings of failure. There were a few days I honestly thought I was going to give up and give in. BUT I had to work and parent my child and so I worked and parented my child and fell into bed every night for two weeks. I got up every morning, put on my Ninja suit with pretty shoes and faced the day. Yeah, that’s right…I’m a badass. *Insert another eye roll*

More like Jackass…

I’m actually very lucky that my infection cleared enough to still receive my infusion. If you are on antibiotics and/or have an infection of any kind or have an open wound, you cannot receive your biologic meds. Not once did this cross my mind. I could have really messed up my treatment and set myself back a year of being in remission.

AND on top of all this, I attend my infusion not hydrated enough so my veins collapsed. It took three… THREE tries!!! During the second attempt, the IV went through the vein and ballooned. No one’s fault really but the dehydration didn’t help. You’d think I’d learn… But no… Hydration is the 101 of biologic infusions.

I let my warrior tenancies get in the way of realistic and healthy choices. I rarely think of myself first and I strongly believe in mind over matter however I need to listen to my body. I need to respect the messages it is sending me. I need to hear it… Loud and clear. If I am going to outlive these diseases, I need to put my body first.

Us…the chronic illness suffers, Us…the warriors… are warriors even when we need to lay down or sit or cancel plans. Its ok to say no to a task or no to plans. It is also ok to ask for help. We don’t have to be ON or the badass Ninja 100% of our battle. We are true warriors in just being honest with ourselves and focusing on what we need to continue the fight. We are true warriors for not giving up in whatever capacity that looks like.

So keep fighting, listen and prioritize the messages your body sends you.

Brusied But Not Broken

BRUISED BUT NOT BROKEN

I have tumid lupus. It is rare.  It has all the symptoms of SLE (systemic lupus erythematosus) which range from;

Tumid Lupus attacks the skin from the inside out leaving permanent bruises.  When I was first dating my husband,  many thought he was harming me due to these bruises.    To me, it was actually quite funny.   What else can you do but laugh…

I was in a serious car accident during the first months of us dating.  During my hospital visit, not only the OPP Officer but also the Nurse asked: “what are these bruises!”  (on my right arm) while glaring at my boyfriend\now husband.   We thought this was hilarious because if you know me, you know what if anyone were to physically assault me,  they need to make sure that they’ve knocked me out because their life would be in immediate danger.  I  responded “it’s my lupus” …which I hate because I am stating that I own it, it belongs to me but I don’t want it there.   I didn’t invite it into my body.   I don’t enjoy being its host.    This is also why I give “lupus” some character and call it Mr. Lupus.

It’s become this unwanted guest that eats all your food and drinks an enormous amount of booze and just hangs out causing annoying factors in your life.  I picture Mr. Lupus with his hands in his pants on the couch like Al Bundy, but instead of shouting chauvinistic statements, Mr. Lupus shouts directives to the T cells (lupus cells) “attack the arm … make it burn… tomorrow we attack the back”.  AND when I inject my Methotrexate meds,  I picture that I can hear Mr. Lupus screaming… “RUN!!!… RUN for your cell lives!!… I’ll get you another day my pretty!”.

Oops sorry, that was a huge brain fog… thoughts off track…. LMAO

I couldn’t imagine what it would feel like to have suspicions aimed at you for possibly hurting someone.  Many cannot think outside the box, surprisingly this happens in the health profession as well.  Once Mr. Lupus is disclosed many say “oh that makes sense”.  My husband usually responds with, “if you knew my girlfriend\wife you’d know I’m the one at risk for being harmed” …. And then we laugh and laugh.    Not because any of that would be true and\or happen but because I grew up in government housing, the projects and had to learn how to “whip” some ass if needed.   I am a very strong woman: mind, body, and soul.  I don’t take shit from anyone.   Not from any person and certainly not  Mr. Lupus.

I am going through the longest Lupus flare that I’ve had in a long time, almost 6 weeks.   Mostly due to the inconsistency of the weather.   When Mr. Lupus is active and attacks, I am beyond tired.   No amount of sleep is enough sleep.   Those bruises burn… like a bad sunburn and when really bad,  my skin is on fire or a better way to describe it is… the bruises can feel as though someone is burning me with a cigarette.  This is usually when the lupus is most heightened.   My gums also become inflamed and bleed for no apparent reason.   Mr. Lupus can also bug Ms. RA and cause her to flare as well.   I’m lucky, this time around the Infusions (biologic medicine given via intravenously)  is protecting Ms. RA with “the wall” it has created around the RA cells to slow down the progression and minimize flares.

I have been trying to function with all of this going on.  I’ve been trying to work through it using yoga.  Yoga right now is my BFF.   Other than weekends, I work, do yoga, and go straight to bed.   There is not much more I can do right now if I want to continue to win this battle (flare) against Mr. Lupus.   You only heal when you sleep.

The trick or ammunition to use in fighting a chronic illness and\or auto-immune disease is living your life.  Even if it is in small spurts.   Live, laugh and love is the key.   I’ve gone camping, even though I hate… LOATH dirt… to be with loved ones and around laughter.   I have gone to yoga 4 times a week for the last few weeks and used my body to its limits. This has caused me to gain strength in body and mind.   I have also broken down and cried cause some poses cause me a great deal of pain.   I cry and get back up, to try again.   I have worn heels (if only for an hour) and felt like my old self.  I have socialized and loved and laughed.   I also strongly believe in mind over matter and my thoughts continue to be “I am genuinely bruised but I am not broken”.   I can do this…

I am living my life the best way I can while fighting these unwanted diseases AND right now I am winning.   Keep fighting… you may be bruised but you are not broken.

 

 

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…

Inspiration… where??

I haven’t written in a while. I haven’t been in an inspirational place.  My Blog was created to inspire others.  To encourage others to keep fighting their chronic illness.  Right now, I feel nothing of the sort.  I, myself am barely hanging on so how could I inspire others right now.    My husband suggested that I write anyway.  He said my followers deserve my truth.

I’m struggling.  I’ve been struggling for months now.  The pain is not as potent due to the infusions but my energy has not increased. I have no motivation and care even less.  In many ways I have given up or at least it feels that way, currently.   I really don’t want to be anywhere with anyone at any time but in my bed or in front of the TV.  Right now, the death stare is on full blast every evening.   I get the impression my husband is terrified of me.  He comes to bed late often.  He says its due to computer work for his photography club and\or laundry.   I think it’s to ensure that I am fully asleep.  To ensure the miserable wife has gone to bed and walking on egg shells is no longer required.

I can barely make it through the day.  All of the body movements you are required to use to complete tasks, the ones that everyone takes for granted; hand movements, walking, and driving is exhausting for me.  Its absolute torture for me because all movements and all tasks rob me of energy.   Every morning I wake up and contemplate calling in sick so I can sleep the day away.  So I can be alone in peace and do the bare minimum until my kidlet gets home.

I can barely eat with pleasure now. I have permanent indigestion.  Everything bloats me, causes gas and heartburn.   I’m a great date.   I either want to vomit or shit and I’ve just learned RA causes this too…  LUCKY ME!   YAY for us RA sufferers!...   Unfortunately, I’m still fat.   Which seems even more evil than the symptoms.   At least Ms. RA could help me lose some weight through all of this.  I swear this is why RA’s gender is female.  She can’t help a Sister out.     “You can’t look good while she has revenge on your body”….

These last few weeks I’ve had tendinitis.  It started in one foot now it’s in both.    I’m barely walking.  I’m shuffling now.    This feels old and sad.   I get a glimpse of what I will be like when I am crippled.  Crippled is not a nice word but that’s exactly what you are.  Your hands and feet become crippled.  Your toes and fingers become deformed and physically mutilated.   You are crippled.….and this is common for many RA suffers.

It seems everything I’ve researched lately, all my symptoms are indicative of RA.  RA is the cause of this , the culprit of that… the asshole behind all negative symptoms.   Just once I’d like to look up a symptom of RA and it says “RA helps you becomesa millionaire” or “because you have RA you get a dream house in Aruba” …

Welcome to depression.    I have entered the autoimmune disease depression phase.   This is also common and hard to avoid.   It happens to everyone and several times throughout your autoimmune disease life.  This is my first real bout of it.   I’ve had my “pity party” sadness but that usually ends after day one.  This is different.   This is the realization that you will feel all of these symptoms for the rest of your life.  This is the realization that many of you life goals may not be accomplished.  And the biggest one for me is… the realization that you will be dependent on someone or something (cane, walker, wheelchair) at some point during a duration of your life.   This is the kicker for me.   This is the hardest to accept.

I have been independent all of my life.  Usually it is others that depend on me, which now is also troublesome.    I do not have the strength to physically be there for others nor do I have the strength to accomplish tasks on my own.  I can’t bring anyone coffee because I can’t carry more than one cup.   I can’t apply complex make up or wear shoes with buckles.  I can’t hold the makeup brush for very long nor can I use my fine motor skills to do up the buckle.   I feel useless.    I feel as though every fun characteristic that is me… is fading.

I haven’t worn heels in weeks and it is contributing to my madness.   I know … many of you are thinking big deal… it is to me.   Heels are my way of expressing myself.  Heels can give you grace and confidence.   They give you height and poise.  They add pizzazz to any outfit and they are damn sexy.   And I’m all bout showing off dem sexy legs….   Flats are exactly that… flat.   Boring and uninteresting.  Although, I do have to say shoe designers are coming out with some nice designs as of late… and of course I’ve bought some, cause I have a shoe buying issue and cause I wanna and cause it makes me feel better... But to say the least my personality is quite flat right now so why not wear fabulous flat shoes…

As this is coming to a close,  I think to myself, others will think that I am trying to get sympathy or attention.  Others will think I need the attention of people checking in.  I don’t.   I need you to listen.   I need you to open your eyes and see what goes beyond what is in front of your face.    I am writing this because how I am feeling is how many men, women  and children feel alongside me.   This is real.   This is the reality for many people that you encounter everyday and sometimes it is worse than this.   The suicide rate is high among chronic illness sufferers.   They feel as though they are alone.   They feel as though their pain is swept under the rug and that they are invisible.   No one is truly invisible.

And even though I may not feel very inspirational or that I am accomplishing very  much.   I know I am.  When you break it down.   I get out of bed every day.   I make my daughter’s lunch every day.  I do my daughters hair every day.  I go to work every day.  I help others every day.  I run errands every day.  I smile at someone every day.   I still GET UP and DO… every day.  Even though it kills, even though it hurts, even though it’s tough.   And that is… inspiring.  And That is  the true definition of fighting.

Keep fighting… and keep being kind. 

 

 

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?” …