Sit in Silence

Silence can be medicine. Silence can be a joy. Silence can be a prison. Silence can create the greatest fear in some. Silence can cause our subconscious to speak the truth we hide away from.

Silence is my medicine. Silence is my meditation. Silence is the antidote I take to recognize my inner power; Self-growth. I am now at a stage in my life where I am always evaluating to be better, to be kinder, to love openly, and to trust. There is always work to do within ourselves and this is our greatest purpose.

Sitting in silence with one’s self can be terrifying. Acknowledging errors and areas of improvement is self-awakening. It is also scary. Being truthful with ourselves can be a form of acknowledging mistakes, and as a form of learning. It can also be a mirror to the ugly thoughts we think more frequently than the pretty ones.

If you are a chronic illness sufferer, sitting in silence means also feeling the real pain you’ve been avoiding through movement. We move consistently and constantly until we crash. We avoid the real pain because it makes the disease real… and sitting in that reality is lonely. We have nothing in common with the healthy. We forget what it is like to feel well. We feel lost.

Recognizing your pain can be therapeutic and freeing. Listening to your body explaining what it needs and how it needs it, is miraculous. Silence and rest are necessary to move forward in self -growth. We need to hear what we are really thinking in order to pursue happiness and contentment.

I learned early on through yoga that silence is a gift. To be with only yourself is a great discipline. When I stop and listen to myself, I hear and feel all the emotion that I have pushed away to keep being resilient. However, that’s not the true meaning of resiliency. To be resilient we must have confidence, optimism, and hope. Regularly evaluating our morals and values and actively living them is linked to a higher resilience state.

I know that I have always been resilient. I have overcome many barriers that would be enough for two lifetimes, however, I have never lost hope in myself or the human race. I believe love will conquer all. I believe in sitting in your truth at your own pace. I believe in living a life balance between avoidance and acceptance. I believe in having strong boundaries in all areas of your life. I also believe in compromising that boundary depending on the effect it will have on you in the long run.

Sitting in silence is also another way of showing yourself admiration. Being with oneself is the greatest gift you can give yourself and others. You allow your mind to wander without influential stimuli. Your senses are more in tune. Your perceptions have more clarity and most of all you enjoy your own company. When you can have a positive relationship with yourself, your interpersonal skills with others are heightened.

Silence is a gift, loving yourself is a gift.

So love you, enjoy you and live anyway…

Self Doubt

I have been fighting a lupus flare since February 2019. I think I’m getting ahead of it and wham! The flare gets stronger and takes me down. The last 4 weeks, I have been struggling physically and mentally because of it. I save all my energy for work, yoga and my child. I have nothing left to give every night after 730pm.

I rarely talk about this but I think it’s time. Being chronically ill affects your self esteem and confidence.

This flare has won. It has affected my self confidence to the point that I am afraid to try yoga poses that took me months to achieve. All out of fear. I’m afraid to do the wheel pose. I’m afraid to continue to practice chest stand. The fear comes from feeling weak. The fear comes from the thought of making an error, hurting myself, and causing an RA relapse.

But I stopped that shit today… I felt strong during practice today. I felt like I could take lupus as well as my fear on. So after practice, I went back to basics. Forearm and Hand stands against the wall. I decided to take a risk and walk closer to the wall on my forearms and hold my legs straight up in the air for a second.

Well, I accomplished it. I was able to set up closer to the wall, push off and hold for one second.

Then… I fell over. I have avoided falling over out of fear. If I hurt myself, I could screw up and cause a flair, even hospitalization. But I’ve always thought, what if I am stronger then what lupus leads me to believe. What if I fly?

Your body can withstand almost anything. It’s your mind you have to convince.

So yeah, I fell over. It was a safe fall. A perfect fall really and my confidence soared. I accomplished something and didn’t die. I accomplished getting over that fear. I didn’t allow lupus to lead me to self doubt. I found my strength within and lived anyway.

Heavy

I said that I would be honest and I haven’t been.

I’m struggling! This Lupus flare is taking me under. The pain associated with it is… unbearable.

This pandemic – My kid going to school unsafely – Me being high risk.

Having intense conversations with racists to encourage change.

It’s heavy! So very heavy.

I just want to cry and hide from everyone and everything.

BUT, I can’t! Hiding doesn’t help, pretending doesn’t help, It only makes it linger. So I go to rinse it out on my mat. I’m already setting myself up to fail, thinking I’m going to have a shitty practice. Thinking Mr. Lupus is going to make this practice a challenge.

And… it was a challenge. Yoga is meant to be a challenge, hence why I go. To strengthen and to build. To support my body and clear my mind of all this heaviness.

As I’m flowing, my mind reminds me that I am only one person and I do not need to take everything on.

Any small change is significant change. I truly only have to change the things that are in my grasp.

The pandemic ~ I can do my part and keep my family safe by following public health recommendations.

I can make my kids school aware that I am high risk and hopefully they will support us and my child with some added support. I can’t change my high risk status.

I can have multiple conversations about why black lives matter. I can post and I can protest but, I can’t change all racist views alone.

I can’t change the fact that I am sick. I didn’t get sick due to Karma or because I was a bad person in a another life. It just happened.

I can change how I let it affect me and I can use it to inspire others.

I can’t change the fact that some days I can handle complicated poses and some days I can’t. Today, I couldn’t lift myself in wheel pose even with the support from a yoga wheel. But, I can show up on my mat, even just to lay there for self care.

So yes… the world is heavy but, I can’t change that. This is the time for reflection. We need world unity to move forward in this but, we can’t take this on solely by ourselves.

I will keep doing my part by recognizing that these are heavy days.

I can only take one day at a time. I can encourage others to do the same.

I can be kind, while encouraging others to be the same.

I can prioritize self care, while encouraging others to do the same.

I can live anyway, while encouraging others to do the same.

Much Love 💕

~ Be you ~Love you ~

It took me many life lessons to fall in love with myself. All of myself. I no longer care about the pressures that society tries to instill upon me. My body is the vessel for my mind and soul. My size and appearance doesn’t change my morals and values. It doesn’t give me an automatic pass for unkindness because of body perfection. It doesn’t change my thinking or my moving forward. Thinking less of yourself only destroys your inner strength. You have one heart, one soul, one body and one life. Life changes are inevitable. Overcoming boundaries are apart of our journey. Where I once disliked who I was, I worked hard at changing that relationship. And although I’m chronically ill, that love doesn’t waver. I may doubt my abilities at times, but my self love is solid. I am me and that is perfect for me. Be you and love yourself immensely.

Come Out…

When I started this blog in January 2017, it was to inspire other people to live anyway.   It was also a therapeutic forum for me.   I started the blog after I agreed to start biologic medicine through infusions.  All other treatments failed and the biologic’s were my last hope of achieving long-term remission.  However, I still felt like a failure and was devastated.  This blog site was my ability in bring positivity to others and to myself. 

Since then, I have received many messages from inspiring warriors of how this blog has supported them.   I have over a thousand followers and have reached over five thousand readers.  I would say that I have accomplished my goal.  Well of course I have a new goal now.   I would like to encourage autoimmune disease sufferers to come out.   Come out of the chronic illness closet.  Many have come out to me although, they have not come out to their family, friends and/or employers.   Many continue to suffer in silence.

Being chronically ill definitely has several negative connotations.  We are discriminated against.  We are often judged harshly.  People need to see the illness in order to believe it but then when the visible illness is uncomfortable visually; they no longer want to observe us.   Invisible illness is not recognized.  So we are stereotyped as scammers, liars and frauds.   We are looking for drugs, sympathy, and attention.  We are lazy and embellish often.   We are not honest.   We don’t want to work.  We want to collect a free pay cheque.   We have mental health issues. 

Some of this could be true, but most of it is bullshit.   Those of us who have the pain tolerance and the stamina to work – Do.   Those of us who cannot tolerate the pain, may need a higher dose of pain killers.  Many cannot get out of bed and if they are parents, may have to parent from bed.   Many of us cancel plans often and then there are many of us who will deal with the pain in order to visit others.   Many chronic illness sufferers have dual diseases and other health complications.   We cancel plans often, we go to bed early.   We leave events early.   We do what we have to do to survive this life while being ill. Everyone copes differently.    

I hear from many people inspired by this blog and my self- disclosure, “well don’t allow your illness to define you”.    I do agree to this – partially.  

Don’t let your disease define you, but acknowledge it, label it and disclose it.   I am a firm believer in accepting it, acknowledging it and building a relationship with the disease(s).   Unfortunately, without a wish for it, we became sick; our bodies for some reason are at constant battle with itself.   Why hide that?   You have done nothing wrong and this certainly is not your fault.   There is nothing to be ashamed of.   Hiding it only gives the disease power.  Acknowledging it, fighting it and living with it, gives YOU the power.    This  disease is apart of you now.  It’s like an unwanted “Santa exchange gift” that unfortunately you can’t re-gift.  And… in all reality, we wouldn’t wish an autoimmune disease on our worst enemy. 

I found that once I accepted it, and started building a relationship with my diseases, I noted that my body spoke to me and even educated me on what it needed.   Even though I push my limits to the very edge with yoga, work and socializing, I still listen to my body and take the break that it needs.   I rest when need to, I cancel when I need to and I ensure that I do not do anything to myself that can cause significant pain.   I ensure that those in my life, including my employer are aware of my diseases, and my disabilities.  Because of those diseases there are other risks attached.   I could have a heart attack or stroke (these are my risks – 40% chance)  at my desk or at the yoga studio.   If I didn’t disclose my illnesses and my medications, no one would be able to assist me to ensure I receive safe interventions.  If someone in my circle does not believe, or cannot show empathy or understanding.  I do not take that on.  It has nothing to do with me. I remove them from my circle.   I ensure that I am well supported, not only in my personal life but at work as well.  

I have to say that I am fortunate to be well supported in both sectors of my life. I do recognize that not everyone has that.  I also recognize that it is not easy explaining your chronic illness to others.  However, I firmly believe that hiding the disease has significant implications on your physical and mental health.   

I encourage you to not be defined by your illness but to accept it, embrace it.  Educate yourself and others. Form a supportive network (size doesn’t matter). You may just be surprised by who will come to the table to support you.    Being chronically ill is a great challenge.  It comes with many facets but you don’t have to do it alone.

 I encourage you to keep fighting (whatever that looks like for you) and to live anyway.  

Breathe

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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.

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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.

Change of Engagement

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There was a time that I would go out with friends or my husband and you would observe others looking at their smartphones. They were in the same place but they were not together.   A few years ago, we vacationed to Mexico for a wedding.  I observed a family of 4, rent a cabana bed and sit by the poolside on their tablets and/or phones all day.   No interaction with one another, what so ever.

Even I have looked at my phone during a night of socializing with friends and/or family.   My posts or a meme a friend sent was more interesting than the company I was keeping.   No really, but I have also been sucked into the screen.  Many a time.

Our internet interaction was a way to escape our overly responsible lives.   A way to escape our stresses.  At a time when we could enjoy face to face contact, we didn’t and now look.

All of our communication skills of face to face contact has been taken away from us and we are all struggling.  We are putting ourselves in danger just to make contact with someone… anyone.   Why???   because our internet connections to others are not satisfying enough.   As a counselor, I have been preaching this for some time.   As humans, we cannot survive without face to face engagement.   We cannot survive alone on written words and text messages.   We need to read facial expressions, verbal and nonverbal communication, to touch and to be touched.   We are learning now through this pandemic that we need interactions, engagement and affection to survive.

In the United States, 1944, an experiment was conducted on 40 newborn infants to determine whether or not individuals could thrive alone on basic physiological needs with affections.   These babies were separated into two groups- 20 in each group.   One group only received basic needs of feeding and changing. While the other group-housed in another room received basic needs and nurturing.   The experiment was terminated after four months.  More than half of the babies that received no engagement of communication died.  Two more died even after they were given all of the basic necessities including engagement.   Before each baby died, there was a period where they would stop verbalizing through cry to engage with the caregivers.   They stopped moving even.  They would die shortly after.   There was no physiological reason for their deaths.    It was as though the babies had “given up”.   The other children that received all ways of life had no deaths.

The conclusion was that face to face engagement and communication is crucial to the needs of humans.   I use this example often in counselling and in my private life.  I am not a fan of the experiment to say the least however it is a strong point in proving we need nurturing and affection to live.

Now.. I am a firm believer that if COVID-19 happened even just a few years back, without technology we would be in a much worse condition regarding any social contact however even with it,  we are struggling.    I am struggling.   I am an extrovert and I am a touch talker.   I communicate with all my forms of communication (verbal, nonverbal and touch).  I am also very social. I enjoy being with people.  I am a hugger and a feeler upper (take that as you will … LOL) and I am struggling without a doubt.   My soul feels odd and disconnected from others.

We all wanted some “US” time.  Some time off.  Some time to rest.  We didn’t want to be bothered by neighbors or people coming to our doors.  Long lost are the days of borrowing butter and sugar from someone close by.   We have isolated ourselves long before this virus.  BUT  when you remove our social choices and freedoms, we struggle.  Now I observe people talking as they pass one another by during their daily walk.   Now I observe communities coming together to help one another.  Now I see toilet paper being shared.   Now I see politeness and smiles.  Now I see respect for the elderly, and the disabled.

Now I see people seeing and missing other people.    So maybe… just maybe this virus is doing more good then destroying.   Maybe this virus is not only giving us messages about how we need to change the way we treat this planet but also how we need to go back to simpler ways of human contact…

Be well and Be Kind.  Stay home and Stay safe.

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

Self love to fight back

This back and forth weather has caused Mr. Lupus to flare. It has been the worse flare I’ve had in a few years. The nasty red rash with blisters are on my face, boils on scalp and red sores in my nostrils. I’m in that constant “work out” pain and I haven’t been able to shake this flare for two weeks now.

I’ve used yoga to get me through. I’ve been using self care to fight back. I’ve rested when needed and I’ve taken life at my own pace. I haven’t taken any days off work or allowed myself to become isolated.

This morning I’ve had one of my best practices. I was able to do both half camel and full camel pose . This pose kills me. It causes me a great deal of pain. It’s scary and leaves you feeling vulnerable but I did it.

I used my self love to push me to fight back… When I believe in myself and not in the disease, magic happens and I always come out on top.

Keep fighting, live your best life… oxox

So This is Life 

An Assist Part 2 

So after I wrote the first blog “An Assist”, I thought to myself there’s more to this. There’s more than just expecting that everybody needs help to get through this life.

So I started to process my thoughts and theories.  My thought process started off with, the rate of suicide increasing significantly in the North American culture. And I came to the realization that WE are confusing our Society, ROYALLY.     On one hand, we are saying that we need to bring mental health awareness to the surface.  There should be no taboos and we should discuss it as we discuss all common topics.    BUT on the other hand, we also fool Society and ourselves into thinking that individuals are stronger for not sharing their mental anguish.   Asking for help is a sign of weakness.  Talking about your struggles, and your mental health is a Debbie Downer.   It’s negative and no one wants to hear about your shit, they have their own shit to deal with.     We then create these Instagram fairy tale lives, never really showing the struggles.  The real struggles EVERYONE is experiencing.

However, if you talk about anxiety; a natural emotion to many situations like a car accident, lack of funds, child illness, or waiting for serious medical test results, “WE” label this as an anxiety disorder or a significant mental health issue.   Anxiety is also a response to a situation, an emotion.  If I lost my wallet and have no money… you damn right, I’m going to be anxious!   How the hell am I going to pay for shit? What if my gas tank is at 1\4 tank and I still have to travel home?   Of course, I am going to be anxious.  This isn’t a nice situation! … This shit isn’t comfy!  But instead, Imma post it on Instagram cause I look damn sexy in my car!!… But I won’t talk about how I’m freaking out inside because I have no money, no credit cards, and some fucker is probably using them!  I won’t talk about the many calls I have to make to ensure I report everything.  I won’t talk about the fear of trying to obtain all of my ID with very little ID to prove who I am.

LET’S TALK – this is the motto and the marketing for Bell’s “Let’s Talk” mental health awareness and fundraising forum.  It’s brilliant and very needed, however, is it working?  Suicide is on the rise.  People are killing themselves to get out of this life.  Why?   I struggle with the assumed diagnosis that someone who is suicidal or has taken their own life has significant mental health struggles.   I am no expert by any means. I’m also not an expert in suicide awareness or in mental health awareness although in being a counsellor I do understand and observe.  I question,  does suicide always have to do with mental health or a  mental health diagnosis?   Is suicide always connected to chronic depression or a mental health disorder?  Could living this life be the cause of wanting to die? Or living an isolated life be the cause? Is suicide about getting out of “here” or is it about not feeling worthy enough?  Could the decisions that we are making regarding social interaction, in turn, be causing poor mental health?

Life is really hard.  Life. Is. Damn. Hard.   Life is damn hard without children, pets, chronic illness or any other exceptionality to “regular life”.  The lifetime hamster wheel is exhausting.  Get up, go to work, and werk, werk, werk, werk, werk, werk. (You sang it in your head too, didn’t you?).   Run errands, pay bills, pick up or cook dinner, clean something, answer a few emails, maybe work a little more, text a few people, maybe watch TV and then go to bed.  AND Tomorrow – you do it all over again, and then again and again and again.

Now let’s add partners, family members, children, pets, chronic illness, elderly parents, terminally ill friend or loved one, credit card debt, exercise, and various chores.  Now let’s add more of life’s stressors; conflict… with anyone, termination of friendship or job, car breakdown or accident, travel/commute times, lack of healthy food and lack of sleep, any addiction of any sort and poverty.

Now let’s add the pressures of the North American Society; fabulous career with fabulous pay, big house, expensive car, great marriage/partnership, children and then they have to be exceptional children, and you with exceptional parenting skills, and have exceptionally close relationships with these children,  add the several extra-curricular activates for the children, have an amazing wardrobe and all the current technical toys.  Now add all the trendy health fads and all the self-care push…

YOU MUST HAVE THE PERFECT LIFE!!!  Why?  Because Society says so.

Now add Social Media; you now have to show this perfect life on an account several times a day.  Your worth is measured in likes and the number of followers.  You feel validated by the number of likes and comments that are left on your post.  AND everyone who follows you thinks you’re are happy and amazing.  Do you post unhappy things?  Rarely cause you could come across as wanting attention or because some asshole will post negative comments.

It’s easier to text than to talk.  Texting is a no accountability conversation.   If my text upset you, then YOU must have read it wrong.  It becomes your problem,  not mine.  Easy, peasy.

We rarely engage in face to face contact with one another and if we do our faces are looking at our phones… not each other.

Look around you…

At dinner out – are people conversing or on their phones?

At the movies – are people watching or on their phones?

At vacation spots – are people experiencing or on their phones?

We have lost a sector of our human need, a need that is essential to our existence.    Human interaction.  Face to face contact.  Human touch.  We cannot live successfully without it.

We pretend to have a perfect life, we strive for materialism, and for self-proclamation at the same time.  We rarely engage in face to face interaction.  We don’t dare speak about our struggles; about how hard life is and how we may be unhappy but we encourage everyone else to accept depression and mental health… We never speak about our mental health, the strengths or the weaknesses.  AND we don’t know why the suicide rate has increased…interesting.

Do you know that many of those people who actually want to die don’t ask for support or an assist from family, from friends or from services?  We regularly hear “they were so happy or they had everything going for them”.   Not many in that person’s life knew of their struggles, their challenges and/or their worries.   They rarely knew about their mental health.   That suicidal person put on a front.  They put on a show for others… why?  My perception is because of the conflicting messages we’ve created.

Let’s talk but I don’t really want to hear about the negative.

Let’s talk but don’t admit that you are depressed.

Let’s talk but don’t ask for real help because you’ll be seen as weak.

Let’s talk but don’t mention that you are wanting to die.  That you want to give up.  That you’ve had enough of THIS life.

I truly do think we’re trying to change the way mental health is portrayed in our Society.  We are trying to un-label the labeled.  I still think there’s a great majority of us that look at asking for help or reaching out for assistance is a sign of weakness.  AND it comes with judgment and it comes with ridicule.  We need to do better.   We need to do more and we can… starting with ourselves.

I myself have my Go To’s but they are very few.  Less than 5 people really.   I would much rather spill my heart out in a blog that might reach someone who will understand than speak to someone in my life.  I’m also trying to change that.   I’m no longer telling everyone “I’m fine” when I’m not.   I’m not pretending that my life is all chocolates and no shit.  I’m posting the shit too.  I am trying to make a point of connecting with people and checking in.   If I feel as though life is hard, I also recognize  I am not the only one.   I continue to love, be kind and respectful towards all.   I ensure I have appropriate boundaries with the toxic people in my life. I take no bullshit from others… and I surround myself with people that carry genuine love for me.  I try to give back in order to feel as though I am contributing and to make another feel that they are worthy of this life.  Generosity does work miracles. It is a phenomenal natural medicine.

We all have some purpose on this planet.   Us extending our hands to each other is essential to getting through this life.   Please make your hand available.  Check in with those around you.  The toughest are the ones who fall the hardest.  Someone might appear strong however they may not be.

Life is crazy difficult, confusing and at times torturous.  No one can understand that better than you.  Your life is important.   You are needed here.  You are not alone.  There are many around you that will hold your hand through your lowest times.  Just take it…

Keep fighting…  oxox

An Assist

I find it very interesting when we think others who have challenging lives or experience great struggles are seen as strong because they choose to say nothing to no one or ask for any assistance.   They don’t need any support at all.  They can handle it all on their own.  They’re lying.  Many people never mention or speak about the stresses they face and our Society sees this as strength.  We are lying to ourselves.

In my personal and professional opinion, I do not see this as a strength.  This is a weakness.  It takes great courage to extend your voice to someone and discuss your inner emotions and your struggles.   It takes great strength to ask someone to assist you.  An assist is a support. Leaning on others doesn’t mean you are weak.  It means you recognize your need to lean on someone to get through that trial or tribulation successfully.  It takes even more courage and strength to extend your hand and grasp the hand who wants you to assist you and hold onto it.

At one point in my life, I would suffer in silence.  My attitude was “I don’t need nobody. What are they gonna do for me? I do for myself, by myself, for myself and ALL by my self” (hand on hip, head going and all). I wouldn’t let anyone know how much pain I was truly in.   I wouldn’t want to bother others with my health issues.  I didn’t think anyone cared, let alone want to assist me.  Now….I’m like yes, please! I would love some help.

And truly, there are people in my life who think nothing of my pain, and the disabilities it causes.  I’ve had “loved ones” not offer to take a bag after they’ve watched me struggle carrying it.  So now I ask to lean them also.   And I’ve also had many loved ones who are two steps ahead of me and assist me without offering or asking.  When those times occur, I feel the most loved and the strongest.

We cannot get by in this life without support.  Even with only the daily stresses, We cannot cope alone.  Let alone cope with all life’s stresses without being lifted off the floor when we have fallen.   Keeping our challenges and stresses in our soul damages it.  Don’t fake your pain, your stresses or your challenges.  We were meant to share ourselves with others.  Share it all, the good, the bad and the ugly. We cannot survive without human contact.  We cannot survive without assistance.  Whatever that assistance looks like for you. 

I am a very tough and strong woman.  Trust is difficult for me but extending my hand to others has become second nature.  It’s the core of my being.    And now that I suffer from Mr. Lupus and Ms. RA, I asked for the hands of others.   I have many hands that are extended to me and I only extend my hand to hold a very selected few, however, I can recognize how important this is for my mental health and in my journey through my autoimmune diseases.  I need assistance to continue in my remission successfully. 

I cannot fight this battle alone and even though these diseases are very lonely, it’s important, to be honest. Share your struggles, take the support, and the assistance offered.

So beware if you extend your hand to me, I most likely will hold  onto it, tightly and use any assistance you offer to my advantage. 

I am not hanging off life’s cliff without trying to pull my self up with the assistance of others. 

I no longer will pretend that I am fine and need no assistance from anyone. 

Keep fighting and use the positive support, the positive assistance that surrounds you.  It will help you rise.

Gratitude

 

Today is infusion day and I am happy about it.  It’s taken me almost two years to appreciate this medication.  

This bag of meds would depress me every 4th week. For 3 week’s I wound pretend all was good then the dreaded 4th week would appear and BAM!!! Reality of my illness…

Today I didn’t cry or get that anxious feeling in my belly as 3pm approached.   I was happy.  Yes happy …. I have been feeling great, my long-term prognosis has changed, I’m back at yoga and pain is minimal. 

It still sucks that I have to have meds through IV or that I need meds at all but if you truly look at the situation… I’m lucky.  

I’m lucky we found a combination of meds that work.  I’m lucky that my infusion exists.  I’m lucky my benefits cover them.  Without these meds, my life would be hell all the time.  I would be cranky and nasty and in constant horrific pain… 

With these meds, I’m laughing. I’m happy, I feel good and my husband likes being around me.  My quality of life is wonderful.   I’m not scaring anyone or biting anyone’s head off. 

Now I’m not delusional … There will be lows and I will still have a life of pain however the fake show that I put on for others is not featured as frequently and there are many intermissions now.   I am finally me.  

I haven’t been me since 2013 and now I feel like I can be.  I am free to be me.  I am not covering up my fears or heartache through fake laughter.   I am just me…All of me… (Well to be honest there is the hormonal me…and she’s not fun at all but we can’t blame Ms. RA for that can we??)

So my bag of medicine, my infusion… Gratitude is what I feel for you now… I am no longer angry nor resentful.   I am appreciative.  

I am living my best life… 

Keep fighting for yours…

The Prognosis

The Prognosis

When I was diagnosed in 2013 with Ms. RA, my Rhumey explained that if this day was 5 years earlier I would be hospitalized for treatment. The fear of me injuring myself would be too great to be treated as an outpatient.

I was educated about the hard facts of what Ms. RA could do to my overall quality of life and the risks I could ensue.

After 1 year of diagnosis the risk of heart attack and stroke increase to 60%

If long-term remission is not achieved within the first 5 years of diagnosis, life expectancy decreases by 10 years.

If remission is not achieved within the first year permanent damage to joints/muscles/bone structure increases.

If long-term remission is achieved in the 5 years of diagnosis the risk permanent physical disabilities increases.

Those with RA are 2x likely to develop chronic depression

The list goes on and on … Brain fog, speech impediments, chronic fatigue etc…

Yeah… I was freaking out. I thought my life was over. No future for me. My long-term prognosis was very glumly. My “deadline” was the age of 50. If I had not reached remission – long term by age 50… I would end up crippled (not a nice word but the truth). I would have deformities in my hands and feet. They would be gnarled. I would end up in a wheelchair.

No more jewels on my hands…

No more shoes…

No more dancing …

No more shopping in malls !!!!

“Fuck that noise”… was all I could think. Not this woman. ”Imma fight and fight hard…”

In all honesty, I’ve been terrified. My greatest fear is my body will start to show the battle that occurs within me. And yes … I am vain. I care about how I look. Not for other people…just myself. I don’t give a shit about how others view my appearance. I’m a voluptuous woman who has always taken pride in her appearance. It’s about my views. What I see in the mirror.

So gnarled fingers, hands and feet… How was I going deal with that shit??

Relying on my husband to take care of me? Now… he has in the past due to surgeries and he’s phenomenal but seriously? Makeup? Hair? Dressing me? Imma faint just thinking about it…

To cover up these fears I made jokes. I was gonna get my dear friend and Jewel girl erintracy.ca to bling out my cane. I pictured myself hitting people in the back of the legs or the heels of their feet with it… Hey…don’t judge… people are rude nowadays. There is a shift in showing respect towards the elderly or disabled…it no longer happens.

I would joke about running over people’s feet in my wheelchair like I did with my daughter’s stroller during my Mat leave. People wouldn’t move…even when you said excuse me… So I’d run over their feet on purpose. *insert a big smile*

I would joke about going after my daughter when she lies about going to a house party with all her friends … I’d roll up to the house in my wheelchair, running over everyone’s feet … Calling out my daughter’s name … Making a spectical of myself just to embarrass her. I’d do it too… I’m THAT parent… (I hope for her sake she figures out who her mom is).

But I have had small bouts of remission and since the Orencia Infusions (biologic meds through IV), January 2019 will be my 2year remission anniversary!!! Woohoo!!

I’m doing well. So well, In fact, I got the clearance to return to yoga in December 2017. Yoga is my peace, my serenity and my raw self. Yoga makes me work mentally, physically and spiritually. I can’t hide from my fears during my practice.

Yoga is literally saving me. During my July check-up, I was told if I continue to listen to my body, rest, eat well, practice yoga and continue treatment, my long-term prognosis will change. My Rhumey does not see any permanent damage in joints currently nor does she suspect too in the future. She does not see me with deformities and/or significant physical disabilities. She definitely doesn’t see me in a wheelchair and not even a cane!!!!

THIS is AMAZING!!! So amazing I balled … And then I called my hubby and balled …my bestie and balled and my Mom and I balled some more.

I will have a painful life… That won’t change. My hand disability won’t improve. My infusion treatments will most likely continue for 3 to 5 years But at the 2-year mark, we can start decreasing the dose. My methotrexate injection dosage can also be decreased (these we have already established I will be on for the rest of my life). Finally. Finally. Finally!!!Some good news.

I have always believed in mind over matter. I have always believed that I could and would fight back. I have always believed what you put out into the universe, you get back. I have never let myself give up even though there were times I truly wanted too. I never gave into these diseases nor the fate they brought me. I never let them control me.

Is it my outlook that made the prognosis change? Was it the infusion treatments? Was it the yoga? Was it my keep fighting, live anyway mentality? Or was it the combination of all?

I truly believe all of the above contributed to the change but mostly my determination to live anyway. I continued to live. I continued to laugh and I continued to love anyway…through the pain, through the tears, through the needles and through the unknown.

Keep fighting, keep pushing, keep smiling and keep living. Your prognosis may change too.

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.