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.