Breathe

Breathe pic

 

Tonight my yoga studio put on a breathing workshop. Breathwork is to assist with relieving pain, stress, anxiety, healing past trauma, creating connection, and feeling more at peace. Tonight was my second time participating.
This time was a very different experience. The first time I felt a great deal of anger and rage. Tonight I felt physical pain. After breathing for 20 minutes, I felt a cold stabbing pain in all of my worst damaged joints. My hands and wrists. My ankles and feet and in my cervical spine. I wondered ” what is my body trying to tell me? Does it not want me to breathe?’ and then I had an honest realization. I am feeling all the pain I try to hide. I am feeling the pain I mask every day. The pain I rarely acknowledge to anyone.

I rarely talk about my pain. I rarely talk about how devasting it is to be in pain all day, every day. I rarely cry to others and I rarely admit my fears that stem from being chronically ill. Maybe this breathing exercise is putting me in line with my body for me to come to terms with some of my hidden fears.

Fine!  FINE!

I know I speak a lot about living anyway and not letting your illness define you.  AND  I truly believe in this but I am also afraid. My fear is not about becoming deformed…ok.. maybe a little since I am slightly vain.  It isn’t about becoming slightly or severely disabled.   I can bling the shit out of a cane-like no one’s business. AND… If I end up in a wheelchair, those 5-inch heels are coming back out baby.  But I do fear how my disabilities will affect others.  If I am severely disabled, what kind of added pressure will that put my family in?  How much of a burden will I be?   It’s scary to think that I will go from this independent woman who is the one who usually takes care of others to being dependant on someone else for basic needs.

I am afraid that I will die young. My illnesses are life-threatening. I will die from them eventually. That is my reality. However, I don’t want to die early. Studies show that even though autoimmune disease sufferers are living longer lives due to successful treatments, these diseases still can take 10 years off your life expectancy. I am battling two diseases.  Does that minus 20 years off my life?

I am also pissed and I rarely acknowledge that. Why the fuck do I have this shit? What did I do to deserve this? Am I such a horrible person that karma came back in disease form?   I know I worked my body to stressful points but you don’t get out of poverty by sitting still.  You have to hustle. I regret nothing and I would do it all over again, even knowing I would become sick.   The thing is, science and doctors don’t really know why or where autoimmune diseases stem from.  They are mostly triggered by stress and trauma to the body.    So “we” (as in my medical team)  speculate that working 20 hours a day for over 10 years stressed my body to the point of creating an overactive immune system.  Fine.  I did what I had to do to survive.

Regardless, I hate being sick. I feel useless and damaged. I hate asking people for help. Even though I ask, deep down I cringe. I hate being in pain. I hate being tired and needing to leave events early.  I hate having to explain why I have limitations.   I hate feeling lonely, isolated, and misunderstood.  I hate the judgments that come with being ill.   If I talked about it and educate, I am looking for attention.   If I don’t talk about it, I’m in denial.  I fucking hate needles, infusions, and bloodwork.  I hate having to schedule my life around my treatments.   I hate everything about being chronically ill.  Its always there and if I listen to my body, it’s whispering “help me”. So I try to help it through yoga.

I remember the day my Rheumy and I discussed my remission and how I was stable enough to return to yoga. I was elated and overjoyed. I had been looking for an exercise to assist with my treatments for years. Every exercise caused pain.  When I returned to yoga, it was tough and it was painful. I remember limping out of the studio for months after every practice. But during practice, I could move with limited pain and it felt wonderful. Hot yoga has been my saving grace. The finishing condiment to my medicine cocktail. Now in the hot room during practice, I feel like I have a normal functioning body.   I am free to move with my breath.

Since the pandemic, I am back to being in constant pain. I am back to feeling nasty and cranky.  I am back to isolating myself when I can’t control the pain.  I am back to lots of medication and self-medicating.  I am back to feeling low and alone.    I am back to hating life. Especially this last week. But I am still not giving in or giving up.

So I decided to breathe. Well didn’t breathing put me in the face of my true self.  RUDE! LOL…

Acknowledging pain doesn’t make you weak or needy. It makes you real. Pretending may give you physical strength to get through the day, but mentally it’s weakening you. Your pain, your worries, your fears are all real. If you are not coping with them, then you are not resolving them.  You are not really coping.  You are not being true to yourself.   And unresolved issues cause us to stop breathing.

Breathing is essential.   We need oxygen to live.  Our muscles, joints, organs, and nervous system need us to breathe in order to function effectively.    We need to breathe to release the negative emotions that are brought on by life.  Life is not easy and there is no easier path.   When we breathe, we remember who we are, what we are facing, and what we need to evolve from.

So Breathe, and then live anyway…

When I tell you I’m sick, believe me.

I am sick pic

This subject has come up a lot not only since being diagnosed but also since the pandemic.

Chronic illness is no joke.  There is this general conception that most chronic illness sufferers are faking their illness.   Well let me tell you something, it is the opposite.   Most Chronic Illness Sufferers are faking their wellness for you, for work, for family and friends.  This isn’t the first time I have mentioned this in a blog.   Someone who is sick will put on a show and act like they are fine because it is easier for others to believe so.   Most persons do not want to hear about the pain and suffering an illness causes someone day in and day out.   Acting is also a way of functioning .   Mind over matter.   “If I believe I can function today, I will function”.

Chronic illness creates Chronic Warriors who are lying to you about how they are truly feeling.   This is to protect you along with themselves.  This is to make you feel better and to avoid a great deal of judgment and expectations.   Everyone has an opinion about the sick and how they should care for themselves.  There is also very little empathy shown.    When you ask a  Chronic Warrior how they are, The most you will hear is “I’m tired”.    “How are you?” “Oh, I’m good.  Just tired”.   This is our catchphrase.

I struggle with not being authentic in expressing how I am really doing.  I am not just fine or just tired.  I am sick… every damn day.   Some days are better than others but there is not one day that I do not experience pain in some form.   Most times, that pain I can ignore and go about my day, functioning in Society and functioning with my family.   BUT there are times when I cannot function.  Where the pain is overbearing and I cannot put on a show.   This is when I do not hide or lie.  This is when I will cancel plans or leave early.  This is where I will terminate conversations and state: “I am not well, I need to go to bed”.  Not because I do not have time for you.  Not because I don’t want to be with you..  Its because I am not well and my tolerance for pain, for exhaustion is done for the day.  I have nothing left to give.

That is the whole truth and nothing but the truth.  I AM SICK and I need you to believe me.

Chronic Warriors want to be a part of events, gatherings, conversations more than anything.  They want to be independent and complete tasks for themselves.  They want to be a part of the workforce and family dynamics however for them to do anything, they must pay attention to their body.   When their body tells them, you’ve had enough or its time to shut it down.  Then it is time to rest.   If we do not rest, we could flare or even worse relapse.  A flare and/or a relapse has significant consequences and causes permanent damage.  Relapses can also spike risks of heart attack, strokes and other life-threatening issues.  Many autoimmune diseases are life threatening.

There was a time I attended my cousin’s birthday party.  It was a Saturday night, the night after I received my infusion.   I stayed late, well, late for me.  I had fun.  I socialized and celebrated.   When my body told me to go home, I listened and started to make my rounds of goodbye.  Many made comments of me being a party pooper and poop’n on the party.   BUT the worst was when I was outside leaving, my husband (who was significantly under the influence) got upset and said: “Why are you always ruining everything, why can’t you just stay and have fun?”  (insert eye roll -we already arranged I would go home and he would take an Uber).   I could hear his disappointment but at that time, it didn’t matter.   I had to go home.  It was time to shut it down.  For me to shut off and heal during sleep for the next day.

I am sick and I have to act like I am sick when my body has had enough.   When I am not well, I need you to believe me.

Chronic Warriors already push themselves to their limits every day by just functioning.   Cooking, cleaning, even hygiene routines cause pain and exhaustion. But we push through because we want to live normal lives.   We didn’t wish or ask to be sick.   It just happened.  It is not our fault.  If we had our way, we wouldn’t be sick.   We would give anything for a healthy body.

So the next time someone says, I am sick.  I’m not well.   I need time.  I need to rest.   Believe them.  Believing them is supporting them and helping them live anyway.

Listen. Can you hear her ?

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Shhhh, Listen. Can you hear her? She is speaking very loudly to us all right now. She is sending messages of change and she has been speaking to us for the last few decades. We haven’t been listening. She is upset with us. She is angry. She feels as though we have abandoned her. She is abused and screaming for help. She is now consequencing us and forcing us to listen. She has taken control. Can you hear her? 

We as human beings are not in control. We are not superior beings. We are not the centre of this planet. We do not own Mother Earth, Mother Earth is the Queen and we are to be her humble servants. But we haven’t been, we have? We have taken life on this planet for granted. We have forgotten what our ancestors have taught us. We have forgotten what they have fought for? FREEDOM… And I get it. Every generation wants more than the previous generation. We don’t want others to experience the previous hardships.  But at what cost?   We have become so materialistic that we have made monetary values more important than our earth mother. So now we are paying a very hefty price. 

We have pushed animals into seclusion and extinction. We have cut down and abused our vegetation. We have destroyed our waters and our marine life to make life easier for us. Now it is our turn to be pushed into seclusion and possibly extinction.   Are you listening to the message she is giving us all? 

So let me ask you, How’s your monetary value working for you now? We have the wealthy that are in the same vote as us – the working poor, the impoverished and the rich.  Right now we are all the same.

I ask myself, “how are those 300 pairs of shoes working for you now?” I am the most materialistic person. For myself. I do not judge others however here I am truly the working poor, the credit card junkie, who likes to pretend that I have it all and in the end, I have nothing but a closet full of stuff. Oh sure, my shoes are pretty and I look nice but does that save me from a virus? NO. Am I better than my neighbour? NO. Will, this virus choose someone else over me because I valued stuff? NO. It does not discriminate. We are watching the most wealthy test positive for this virus. We are watching the wealthy seclude themselves, just like us. Oh sure, they may have more room in their home, a pool, a hot tub, maybe someone to cook for them but in the end, their money ain’t doing shit in terms of saving them. The money will not save our species. Making lots of money is not the purpose of life. THIS IS THE LESSON…

It is attacking us because we are human. It is attacking us because there is a bigger lesson here. Mother Earth can wipe ALL of us out if she wanted too. Think about it. Just with natural disasters alone… we would be gone. She doesn’t want that. She wants us to live in harmony with our animals and vegetation. She wants us to help take care of her while we live among her. This planet does not need us to survive. This planet needs us to do better. We have failed our ancestors and ourselves. Our greed is going to destroy us. 

This did not occur because someone ate a bat. Who are we to judge the Chinese culture and who are we as North Americans to push our way of life onto other races and cultures. Many of us eat pig and many do not agree with it. Many of us eat goat and many of us do not. This was a freak accident. If you need someone to blame. Blame yourself. We have all contributed to this. Every. single. one of us. 

Life is about love, kindness, forgiveness, and strength. Life is about relationships and laughter. Life is about art and intelligence. Life is about valuing ourselves and reminding ourselves that we need to show gratitude to our planet by how we treat her. Life is about only needing the essentials to live it. We need air to breathe, but we pollute it. We need water to drink but we pollute it. We need the cycle of life but we abuse it. 

This is a hard-ass wake up call. We either listen now or we pay the price. We can do this. We can make these changes. We can give back while taking very little. We can change. There is to much love in this world to be lost. We have proof, changes will work. China had a blue sky when they were in seclusion. Venice had Swans and a dolphin come visit in a canal. Baby turtles are coming to say hello in small bodies of water in Florida.  The entire world is coming together, learning from one another and supporting each other.

She is speaking to us .. Listen. I’m begging you. 

We need to love each other more than we love money.

Be well.  Stay home.  Make changes.

One love…

 

 

Fierce

There are times when I do not recognize this woman.   She stands there exuding self empowerment.   She walks with her head high in confidence , high self- esteem and  regard.  Her aura emanates self love, self -worth and strong independence.  She loves others deep and openly.  She is loyal and kind.   She puts others before herself in times of need. She is respectful and reliable.  She is resilient and takes all of life’s lessons and learns from them.  She is fun and inspiring.  She tries to live her life to the fullest.  Everything about her is beautiful.  

She is always there in the background.  Even during my lowest points, she’s there waiting to kick my ass in gear.  She allows pity parties for a few days and then she encourages self-care but recognizes the difference between self care, fear and lack of motivation. She will not stand for self loathing for very long. She allows the “licking of wounds to self heal” but she’s waiting in the shadows to encourage the live anyway philosophy.  

Conversations with her can be difficult… 

Low Me:  I’m in so much pain. I can’t do this anymore.  I can’t fight anymore. I’m just going to give in and let the diseases take over.

Fierce me :  Excuse Me?  You will do no such thing.  Being sick sucks. The pain sucks … I get it. But I’ve allowed you your little  pity party … now get up off your ass, dry your tears, straighten your crown and get your shit together.  Your daughter needs you, your mother needs you and I need you to keep fighting because I’m bored with this self loathing bullshit.

Low Me: BUT I’m tired…I’m tired of fighting. I’m tired of pushing. I’m tired of being poked and prodded. I’m tired of all the medical treatments. Im tired of all of the medical appointments. I’m just down to the bone tired.

Fierce me: Listen, you’re in your mid 40s, a mother and a  child protection worker for CAS, you would be tired regardless.  So you can either be tired from regular life or you can be tired from fighting and choosing to enjoy your life. Only you can create your own happiness. If you give up … the diseases win.  They want you to be weak. They want you to doubt yourself. They want you to quit so they can take over all of your being and not just your body. They will enmesh in all of you, the physical, the mentally, the emotional and eventually  torture you until they end your life …* her voice gets louder*  And BITCH ! I’m not having any of that shit … I have worked too damn hard to not live, love and laugh!

And so I get up.  I fix my crown. Not because I’m strong but because I just threatened myself and that’s some scary shit …  😉🤣

You are brave

You are strong 

You can do this 

AND 

You can live anyway … 

Keep fighting…

Stronger…

What doesn’t kill makes you stronger.

I forget this …often.

The festive holidays are wonderful in terms of the visits and food but it really kicks my ass for energy. I’m sure it kicks everyone’s ass for energy. The visiting, eating, laughing, eating, then doing it all over again the next day for several days and/or weeks is simply… fucking exhausting.

Mr. Lupus has also come to visit to create extra chaos. Autoimmune diseases are such Assholes… They appear unannounced during busy times and don’t leave until they feel like it.

I am soooooooooooooooo tired. All I have done in between visits and responsibilities is sleep. I haven’t practiced yoga in 2 weeks. I’ve done fuck all but sleep.

Today I felt bad about it.

As I was cleaning today ( I have no idea on how to take a break from that…I’m slightly OCD), I had a rush of guilt for not doing more.

My thoughts were….

” wtf have I done in 2 weeks but sleep and visit people? I’m such a lazy ass. What kinda of mother am I ? All we did was watch movies. We barely left the house in between plans. What kind of role model am I ?”

But then the rational counsellor in me started to chime in ….

“Umm excuse me … you slept in order to heal yourself… you are in a flare. If you don’t control your flare you could relapse. Then where wound you be ? You visited everyone important in your life. You shared laughter, tears and food…the greatest gifts of all. You cuddled with your daughter during those movies while being silly and creating memories. You also let her just be to enjoy her space without being rushed off somewhere. You enjoyed your home and welcomed people in it… Ummm isn’t that living anyway??!'”

I had forgotten that I worked incredibly hard before the holidays and needed to recover.

I had forgotten you only heal when you sleep and that sleeping is absolutely ok.

I had forgotten that spending quality time doesn’t have to be a planned event or something extravagant.

I had forgotten that resting isn’t about being weak, it’s about making the best decisions for you, your body and your mental health.

I had forgotten that in listening to your body and making the best decisions for you means you are building a better and stronger you…

I had forgotten that even though I am in a lupus flare, I am the strongest I have ever been since becoming ill. Not because I push myself but because I am strong enough to listen to my body and say no when needed.

Be strong.

Live anyway…

A Lovely Damaged Flower

 

I’m damaged. From the time I realized my mother should have saved me from certain circumstances and didn’t … I was damaged goods. 

Trust is terrifying for me. For me to trust someone implicitly that’s comparable to the odds of winning the lottery.  One in a million.  

I try to trust as much as I can, but it’s hard when you’ve been taught not to.  Another Alymar trait is to trust no one and only rely on yourself.   This philosophy – no matter how negative, kept me out of the hood and alive.  This philosophy is the foundation of my resilience. 

Recently, I’ve been betrayed by several of those I trusted (in my way).  Firstly, I was betrayed by the love of my life. My heart and soul were on pause for  15 weeks. I thought I was broken. Many, including family members, barely knew.  I didn’t take time off of work. I didn’t take a break from yoga or from social activities.  I didn’t break down or stop living.  I continued with life and only when I had my week without my daughter did I allow myself to fall apart and grieve.  Not because I was strong, but because I am sick. 

 When your chronically ill,  your mental game needs to be on point, all of the time.  Mind over matter is the essence of your survival.   I can’t afford to relapse after years of working so hard on getting into remission. My family didn’t need me being hospitalized on top of our crisis.  It would have made the situation even more damaging, especially to my child. 

Secondly,  a few ride or die (well I thought they were ride or die relationships) friendships had to be terminated.   Everyone shows you who they are.  We either choose to listen and accept it, or we deny it and act victimized when we get burned.   I now choose to listen.  When someone shows me who they are the first time, I listen and make decisions in MY best interest.  I forgive them and have great gratitude for what they have brought to my life but I let them go.  My energy is needed to fight my daily battles not to be wasted on dramatic bullshit.  If you bring negative shit to my life, you’re out of it.  Harsh but necessary.  

I have always put others before me. Always! That’s the core of who I am.    Being chronically ill has changed that.  In order for me to be on this earth for as long as possible, I have to take care of me first so I can take care of others.  I have a child and I have an elderly mother, both who need me.  I have to make decisions based on how it will affect my body…. and possibly trigger Mr. Lupus and Ms. RA.   

They break me easily … With just a few bad days of a flare-up, I can lose all the anatomy normalcies  I pushed my body to fight for.  I can’t sacrifice my remission for anyone because, in the end, it will affect everyone I love.  

This year has been one of the toughest in my life.  The emotional anguish I have endured while feeling intense physical pain, at times I wished for death.  It would have been easier to die than suffering alone.  I really questioned the fight and whether it was all still worth it.  I contemplated letting the Lupus and RA take over my life.  Death appears to bring peace… but does it really? 

I was put on this earth to live and to love.  I owe it to my parents who fought so hard for my rights as a mulatto woman.  I owe it to the universe who gives me opportunities to explore my abilities.  I owe it to my child who looks at me like I am a gift.  

So all in all, I still believe in love and kindness.  I believe love is everlasting work and my purpose.  And even though I have let many loves go … I will always cherish them.  They may never understand my reasonings and for me, that is ok.   It’s hard to explain to another that any emotional drama has significant repercussions to my remission and I will walk away now where before I would engage and fight back.   No matter the relationship, the drama, the negativity, and the stress is not worth my quality of life. 

I’d rather love and cherish those I let go of from a distance than from the grave.  I’d rather be damaged then forever broken. I’d rather continue to live a life full of only a few fresh flowers then a field of fake ones. 

 Life is truly bittersweet.  The good comes with the bad.  It’s to push you, strengthen you and teach you even when we don’t want it.   So I choose to learn my lessons, continue to love and live anyway… on my terms.

 

Commit, Don’t Quit

I love yoga Sunday’s. I hate getting out of bed but I love yoga Sunday’s 10am. One of my favourite classes… but I struggle with leaving my bed.

If you’ve read any past blogs then you know one of the complaints with autoimmune diseases is CHRONIC fatigue… AND with old man winter Rollin all up on Fall like nobody’s business … EVERYONE’s energy is zapped and the lowest of low.

People are miserable. People be nasty with nasty facial expressions including me. I AM SOO tired and sore. Everything hurts … my eyeballs hurt and even my eyeballs’s eyeballs hurt …and pain makes you pissed off at everyone…

Getting out of bed takes all of my being and I didn’t want to do it this morning, not even for yoga.

Yoga for me is like a feel good drug. Yoga is sexy, beautiful and purifying. When I practice in the heat, I can move with little pain… most of the time. Practicing feels like the heavens have opened up above, sent healing rays to my organs, muscles, and joints. For me not to go to yoga means I’m in severe pain. So this morning, I wasn’t going to go but then I remembered my commitment to myself. A 2x a week minimum. I also remembered I’m getting a few tattoos touched up soon and therefore I will be on a week break.

I got up, I got dressed in yoga gear and went. Even though I hurt and even though I may just lay on my mat in the heat …. I went. I practiced and I kept the commitment to myself. AND that gave me more validation then the successful practice. I went.

I spoke with Nicole (instructor- one of my favs) afterwards and she said “I don’t really know what you need or what I can do for you. You give me the heads up on pain and I watch you push through, even when I see you modify, you push through”.

Yes, this is me. My theory in life. My theory in love and my theory in suffering from dual autoimmune diseases. I push through.

When you push through, You will get to the other side. It can take time. It can be exhausting and frustrating but you can push through…

AND live anyway..

Enemies No More

 

I hated by body as a teen and young adult. I compared my body my white peers and couldn’t understand why my breasts and buttocks were different. Why were mine so much bigger than theirs ? My mother would try to explain that I was mixed race and shouldn’t compare my body to my white friends. My body was like my father’s. My father is Jamaican and his body was athletic and powerful. She suggested I look at other black and mixed race teens. I did and still couldn’t identify.

 

I have always been bigger, taller and thicker than my peers and hated it. Except for the taller part… I loved being tall and started to wear heels to be taller. You look thinner if your taller.

I hated my body to the point that I starved it. At the age of 23, I was 125 pounds. One hundred and twenty-five pound on my physical frame…I looked sickly many said. My body was no longer “interesting”… “You look better larger”. “You had curves”.

I thought my 125lb body was “the shit” though. I maintained this weight for 8 years. Not eating well.. starving myself, my body and my soul.

Even thin, I still hated my body. I hated it so much that I started to tattoo it. I thought that if I tattooed it,  I would find it more interesting and beautiful… I was trying to cover up the areas I disliked, mostly my back. I had a very broad back. I was told that I had the frame of a football player. Well of course I didn’t want to look like a fucking football player… *Insert eye roll*

At the age of 30 and more so when I was pregnant with my daughter, I realized how beautiful and powerful my body was. I also realized that I wanted my daughter to love herself and be confident in her body. I understood that I needed to be that role model for her. I started to except and see that I have a body like my father. I have a body like many West Indian women as I was meant to have. When I gained insight I realized the body is a miracle. My body got me through 10 years of working 20 hour days. My body carried and nurtured a human being.  My body has never broke when impacted physically.  It has never let me down when Injured and has fully bounced back.  And even today…my body is fighting two autoimmune diseases and defying statistics and Doctor’s diagnoses/predicaments.

At the age of 45 I am now a woman who loves her body. Who is actually in love with her body. I now except my body for all of its shape, dimples and curves. I recognize the strength and how powerful it is. I now tattoo it because I love it and for tributes to others as well as myself. I am proud of it and all that this body has gone through.

Truthfully though, I am really not liking this midlife acne and body acne bullshit but even then I still love my body. It is my temple. It is housing my soul and protecting it. It never fails me during yoga and even though my body is now disabled it is still a powerhouse. My body has become one of the loves of my life.

Live anyway and love yourself …

 

 

 

 

Why I fight …

It’s easier to give in. Move from doctor appointment to doctor appointment, take med after
Med. Maybe only work part time, or not at all. Stop socializing, stop living. It’s easy cause eventually those around you will give up and allow you to be isolated.

This may be your choice and that’s ok. It’s not mine. None of those options work for me.

I’m a fighter naturally… I have been raised to fight for a better life. I have to use the same determination to give Mr. Lupus and Ms. RA the greatest battle ever and it will be one of the hardest fights of my life.

Being a parent has it beat though … there is nothing more challenging than raising a child but that’s another story, another blog.

I fight for me. I deserve the best of all things. Everyone does. But I deserve to live and laugh and love. I deserve to work on goals and feel a sense of accomplishment. I deserve to explore the world and learn on a global scale. I deserve to challenge myself at all levels and see all of the strength that serges from my Body.

I fight to continue to be the best of me so I can be there for others.

I fight for my daughter. She needs a strong female role model. She needs to observe that a good quality of life is worth fighting for. She deserves to be a child and experience life as a child. I refuse to allow her to worry about my death. AND I refuse to allow her to care for me.

I fight because I only have two choices. I either fight or I give in. There is no third choice. So I would much rather fight for a life worth living, leave memories and possibly take some with me then die with regret.

I fight so I encourage others to fight too. I fight so that I can be an example to somebody else who is looking out the window hoping for a better life but dealing with pain.

I fight to encourage hope, amongst myself, peers and readers.

I fight For my husband, for my friends, for my family and for my soul. I was put on this earth for a reason. My life was created with purpose. Maybe my purpose is to be chronically ill and inspire others or maybe my purpose is to just live… anyway…

Keep fighting…

Being sick sucks

Many have said they believe I’m still using a verbal filter when I blog and they think I could be more raw … So here it is…

Being chronically sick sucks.

These illnesses give you a break but don’t ever go away. They are powerful and take away your positive mood in an instant.

I’m a very happy and jokefilled person. I love to make others laugh and laugh with them but when my pain gets to the point where I can’t ignore it, I am the nastiest bitch. I am miserable.

There’s not a lot of time between the transition once I notice the pain threshold is cracking.   I warn my husband before social gatherings, “when I need to leave, we leave”. Of course he agrees and we don’t take 2 cars.

Well…. From the moment I give the warning “its time to go” and being ignored…several times. It takes about an hour for me to lose my shit … I snap, then everyone is moving.                 Every. Single. Time.

Imagine a big laugh with a big smile within minutes turn into a very fashionable nasty miserable monster. My voice goes cold and loud, my eyes go wide and bulge … I start to sweat and my patience has no virtue…And then I leave. I barely say goodbye. I’m out. My only goal is bed…and sleep. I need to shut down and shut it all out or many will pay.

This becomes a jekyll and hyde situation. People in my company are like “wtf is wrong with her or what a nasty bitch”. But they can’t imagine or see that my insides are on fire and attacking my every joint and muscle. You’re not much of a happy camper when your eye ball is swollen.

They don’t see me dealing with a dull annoying ache in my body the spreads to others parts and intensifies as the day goes on. They don’t see that the laughter that was fun has turned into painful cheeks, teeth and bleeding gums.

It sucks and it happens everyday. Some part of my body is in pain.               Every. Single. Damn. Day.

I went to see my bestie on Good Friday. We have a blast together. She’s truly the only person I’m genuinely raw with other than my husband. We bitch about life using scarcism. We laugh hard. So… towards the end of the night we sat and rested. And when we got up… we moaned and groaned from the stiffness. I felt like a 90 year old that ran a marathon. I couldn’t walk. I had to shuffle to the stairs and rest in order to climb up them. Then I had to take one stair at a time. All while thinking ” ain’t this a bitch… I help my bestie with dishes and clean up and now I’m a fucking 90 year woman who can barely move. At least my hair looks good ( I just had it done). I can’t move but my hair looks fucking fantastic. If I fall down the steps like Aunt Bunny (Eddy Murphy reference), I’ll break something but my hair will be on fleek for the paramedics and hospital staff”.

Being sick sucks. BIG TIME!

It sucks because you want to have fun and you want to be social but in order to live longer, you have to rest. There’s all these limitations … Your body reminds you of these limitations but you are not known for that, your known as a party pooper.  The person who leaves early at every social gathering

How the fuck have I of all people turned into the party pooper??? Me? !! The dancer ( yes I can still shake my ass … for an entire song). The wear 5 inch heel shaker (this is an out right lie… I would literally be killing myself if I wore these now ). The shopalcolic with no money maker ( I online screen window shop now… It’s boring as hell). The find laughter in any situation jokester(this is my talent, my humour is demented).

Yes! I am now a party pooper who poops on da PAR TAY !!….

Why ??! Because my body is the ultimate asshole.

My body is such an asshole now that if I don’t practice yoga every other day, it makes me pay. It screams bloody murder. You can hear it ” you lazy ass, move, challenge me, or you won’t be doing a damn thing. I’ll make sure of it”.   And this is what happens…I can barely move.

I sacrifice a practice to celebrate an event and I end up the party pooper. All I get excited about is my bed. “Fucking fantastic, its what I’ve always aspired to be. ” THE leave events early PAR TAY POOPER ”

 

Ask for help… I hear this often and so I do but there’s also a unwritten limit with each person. When you’ve taken them at face value and ask for help, after a while you’ll hear ” what do you need help with?” Or you’ll get “the look” of wtf do you want now ?”

That’s when you want to respond with “what the fuck do you think ? I need help with something I can’t do. Obviously… that’s why I’m asking, jackass”.

I don’t use this response very often… It’s not very effective. Lmao. I choose not to ask instead. I go it alone. I’d rather challenge my disabilities then depend on someone who thinks I’m a nussance.

Being sick sucks … You want to live life at the same speed as everyone else. You want to go go go .. experience life and make memories but if you don’t rest … memory making can be limited.

But I try to live anyway. I try to get the best quality of life when I’m well. I laugh hard often. I challenge my body and its strength regularly. And… I rest when my body tells me… I give in. Because giving in means my quality of life lasts longer.

Being sick sucks. Not living sucks more.

Keep fighting..

Live anyway…

It’s OK…

I usually want to inspire others to keep fighting… Today is not that day. ..

Today is a tough day .

Today is an extremely painful day.

Today my ear lobes hurt when I tried to wear my hoop earrings.

Today my gums bled.

Today my hands dropped everything I touched.

Today my neck, knees, and feet felt like they were smashed with a baseball bat.

Today the bottoms of my feet are screaming “ouch”.

My daugther hasn’t slept well in two weeks. The Momo challenge news has terrified her. She is back to waking up every night at 3am and staying awake until we have to get ready for the day.

Sleep is another form of treating chronic illness. It is the only way your body heals itself. Sleeping 4 hours a night is not enough to recoup from the day, let alone start the healing process.

I am a mother and at times I have to sacrifice myself to ensure she’s nurtured and emotionally well but there are times Mr. Lupus and Ms. RA don’t give a shit and strike me down.

The butterfly rash took me down several weeks ago and won’t give up. The Medical cream is not working… My Face and all the lupus spots are burning … Lupus hates my make up and is very angry after I wear some. BUT…I’ve been pushing through … Going to yoga… working, cancelling plans and trying to rest as much as I can.

Today I lost. I gave in. I cried. I hated myself. I hated my life. I didn’t want to fight back.

AND THAT’S OK….

It’s ok to give up.

It’s ok to give in.

It’s ok to cry and it’s ok to feel beaten. It’s really ok…

Tomorrow is a new day ….

Tomorrow you can be you…

Tomorrow you can kick ass…

Tomorrow you can fight …

Today is just one bad day out of many fantastic ones….

Keep fighting…

Live anyway…

Seasons change. People Change

The Big 45 is around the corner. I usually do some self-evaluation and self-reflection on the heavy birthdays. AND in that I evaluate my relationships. The good, the bad and the “put that toxic waste in a bin and throw that shit out” kinda relationships.

Relationships are tricky. We love people and we hate those same people. Sometimes either emotion is experienced for a short period or a life time. I believe once you love anyone … they leave an imprint on your soul forever.

We have all sorts of relationships. Family, we see regularly or once a year. Friendships, where we speak everyday but only get together once every few months.

We have party friends, shopping friends, close friends, gossip friends and then our Go To’s. Our Go to’s are the friends that have your back no matter what. They never abandon you nor you them. They put their own shit aside to be there for you during those times that could easily destroy you. They are your “put your drunk ass to bed and clean up your puke friends. To the crying because of good news that your RA may not cripple you type of friends”.

We have our work friends and our family, who we are friends with. We also have those where we’d love to be good friends but time or life doesn’t allow it. AND… We have those relationships where we love them immensely but can’t stand them after 30 mins and need a break but would drop everything to be there for them when they are in need.

I use to really judge my mother and my brother when I was younger. Both had a huge circle of friends and as they got older that circle became smaller and smaller. I thought they turned into antisocial hermits.

I now know why. As you get older only the real relationships, the authentic, honest and transparent relationships stay current. They are the people who genuinely love you. There is no hidden agenda. There is no gossiping behind your back… They talk to you and express real feelings …They take YOU as you are and they are themselves with you. There’s no judgement or consequences. There is no acting. There is no pretending.

BUT I also believe all relationships happen for a reason. Every relationship, every engagement has a purpose .

I’m tired of bullshit relationships and people. I’m too old for the drama, and the back stabbing. The disappointments of being let down. I need peace. Not just because I’m sick but because I have less than half my life left and I want to be surrounded with people who want to laugh, love and live this life with me, authentically. I want an imprint of good happy memories in my heart and soul when I take my final resting place.

I want to be around family and friends that love my kid and want their own relationship with her. I want to be around those who uplift me and cheer me on, who believe in me and are excited for me when I’ve made small and sufficient gains. I want to be surrounded by those who try to sympathize with me and my diseases and who care when I’m not well.

I know that I cannot expect those to treat me exactly how I treat them but I can implement boundaries. I have choices. I can choose who enters and stays in my life.

I also acknowledge that being friends with someone suffering with a chronic illness is not easy nor is it easy to be MY friend. Even without the illnesses I’m complex. I’m raw. I put myself first unless you need me. I call you out on your shit regardless of what it is. I am always truthful even though the truth is hard to swallow. I’m loud, abnoixous, high-strung, and immature as hell. I’m a survivor of poverty, sexual abuse, parental domestic abuse, father abandonment …..and now a fighter/survivor of Lupus and Rheumatoid Arthitis. I come with baggage and I am open with it. I’m no longer hiding who I am or my diseases nor do I try to make others feel good by lessoning my pain.

I am a genuine loving person. I put my loved ones before myself, always. I save strangers lives regardless of the danger it may put me in. I love the human race and will always fight for the underprivileged. I hold my loved ones hands until life has left them. I hold hands strong while someone is crying or laughing or just trying to be the best they can be. I encourage people to live and use laughter as a medicine for everything and I love all of them even when they break my heart. I am forgiving but I do not tolerate abuse or mistreatment.

This is Me. I am not perfect nor do I expect anyone else to be.

I have many years of self work to do… And as I am striving to continue to move forward and self-evolve, I am living my best life.

The truth is… Any relationship is difficult. You have to decide which ones are worth holding onto and also be thankful for those you have to let go of. I am very grateful for everyone who I have crossed paths with. Without them I would not learn and I wouldn’t evolve to who I am now.

AND even though every great milestone birthday, comes with seasons changing and relationships changing, I do not regret any conversational exchange, or any short or long term relationship. All of them have given me the insight to be my authentic self.

Live your best life. You truly only have one.

Keep fighting oxox