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.

Knoweldge is Power and something to Ponder..

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

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

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

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

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

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

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

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

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

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

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

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

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.

 

 

Raw Infusion

the very first blog

Inspire through RA

Not in million years would I have thought that I would be sitting in a clinic with an IV in my arm, about to receive my biologic medication.  Not once in my young adulthood did I think an illness or disease would interfere or interrupt my life.

What young adult at the ripe age of 25 looking ahead towards their future thinks …. Autoimmune diseases???   At that age I loved shoes, dancing, men and travel.   At that age I knew that I would be renting an apartment and hustling to make ends meet.

Never in a million years ..Autoimmune diseases.. HTF (How the Fuck) did I end up here??

I have RA.  I’m 42 years old with severe progressive rheumatoid arthritis.   My body is at war with itself and my insides are of an 80 year old.. Sexy huh?   I PRETEND a lot..  I pretend that I’m not terrified or…

View original post 234 more words

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.

No need for names…they know

There is only a select few who know what I am truly going through. There’s only a select few who know when I am faking for everyone in sight.

I don’t need to say a word, we are that tight. They only need to look at me to know that I am alright. They do not ask if I need them or something else. They just appear and do what’s dear.

They are empathetic, not sympathetic. They did not try to make me feel small by comparison to others. They understand my story and know that I worry. I worry about the impact these diseases will have on my loves cause I myself can handle most of the tumps.

They never question my sincerity of what I’m going through. They already know that I hide a great deal of the pain cause there’s not much more anyone can do.

They are my rocks, my precious go too’s. I don’t need to say their names. They already know who’s who.

RA feels like…

RA feels like being cut off by a cab driver after you’ve waited in a gridlock for hours.

RA feels like that annoying piece of meat stuck in your teeth for hours that bleeds when you use a toothpick.

RA feels like ”feeling” the burn from exercising all day. Every day. Forever…

RA feels like eating gluten when you have a severe gluten allergy.

RA feels like saving for that luxury vacation, getting there and discovering the resort has bedbugs.

RA feels like you’ve found the love of your life than discovering they’re in love with your sibling.

RA feels like that lost item in the lost and found but no one ever comes to claim it.

RA feels like you’ve aged overnight. Once a week for the rest of your life.

RA feels like someone has trapped you in a cold dark room where you can hear others but no one comes to look for you or hears you calling for help.

RA feels like you are participating in a triathlon with multiple obstacle courses that never end, they just change.

I know what your thinking, RA is hell and it is. It truly is. Recently I described the feeling of RA as being tortured.

See… you get to the end of a flare, or another health complication. You keep pushing yourself to get thru it. ” This too shall pass”… Is what you keep repeating to yourself. You get caught up in the “light at the end of the tunnel” theory however you discover at the end of this tunnel another issue waiting for you. A new area of inflammation or pain, heart disease or heartburn, skin issues, hormone or fertility issues.

Our immune systems are intelligent and will find ways to “outsmart” the medications used to treat the damage it is doing.

For instance, my biologic infusions are slowing down the progression of the disease, treating the inflammation and the pain but now Ms. RA is attacking my tendons causing tendonitis in my ankles and wrists. It’s never-ending. My team of doctors get bigger and bigger.

Ms. RA is like that friend, that’s not really your friend. She’s a friend of your friend that annoys the shit out of you but you grin and bear it…for your friend and for others.

That’s what we Chronic illness suffers due. We grin and bear it. We are truly invisible warriors. We the Invisible heroes. We hurt badly in our minds, in our bodies and in our spirits but we fight… Every. Single. Day.

We fight for our families. We fight for our friends. We fight to work and provide. We fight to try and enjoy life. AND… all these reasons are genuine but the true strength lies in fighting for ourselves.

RA may feel like shit, might be hell but a small glimpse of happiness can feel like heaven.

Keep fighting. You’re worth it…

1 year celebration

My first blog was posted exactly one year ago today.   

My first infusion with Orencia (biologic med) was December 30th, 2016.   I was terrified of the new medicine and the disease.   It was then I decided to use my own personal journey with 2 autoimmune diseases to create a real understanding of RA and Lupus through blogging.  

My goal was to reach one person.   To give that one person hope and the drive to keep fighting.   Well, I am happy to report for the year of 2017  my blog has been viewed 3,125 times.   I have 1,822 followers!!!!  So I would have to say I have surpassed my goal.

WOO HOO!!! 

I know that my blog is not typical.  I am raw and my language is real.   It can be hard to swallow at times.   I have been asked by other bloggers, Facebook pages/groups, and other media sites to change my language in order for them to post my blogs.   I can’t.  The blog would no longer represent the authentic me nor would it give the real picture of the autoimmune disease path.  

So in saying that;  I thank you all for taking the time to read and share my journey.   It is helping others.  It is reaching the people it needs to reach plus educating them as well.   Unfortunately, every day now I hear of someone being tested and/or being diagnosed with an autoimmune disease.  They are more common than apparent.  So my blog and others like it are needed… 

In much appreciation, 

Tosh  oxox

 

I cry

I cry.

I have this moment after every infusion where I cry.  I’m alone.  It’s just a few tears, but it’s tears of remorse and a reminder of my reality. 

Even after four years of coping with RA and figuring out the best treatment, I still haven’t grasped the concept of this 1000 mg bag of medicine.  The last year has been bittersweet.  The infusions are working.   I am now in control of the pain.   The pain is manageable and rarely debilitating, BUT I can’t get over this bag of medicine.   I get so emotional.     It’s as though this bag of medicine reminds me of what I try to hide from the world every day.   It feels like this medicine holds the key to all my health successes.    It resembles the past and the failures of past treatments.  It also represents my future and my life expectancy.  

As I sit here writing I think to myself when I actually pull emotions apart from logical thinking, I can recognize that for me dealing with the pain daily is more bearable than coping with “the bag” of medicine.   I can deal with the madness of the pain.  I can deal with the lack of empathy and the lack of understanding from others.   I can swallow the prejudice and judgments that come from those who don’t really understand survivors of chronic illness… but this bag of medicine causes me emotional and psychological grief.  It causes me to pause in my willingness to fight.  It makes me weak. 

And so I cry not because RA has beaten me down on this day, but because I’ve become reliant on the biologic medicine.  I lean on it to make me feel better.  I cannot fight this battle independently which is indicative of my strong personality.   It reminds me that RA cannot be cured.   It reminds me that I am mortal and there could be a sooner end to me because of it.  The medicine reminds me that RA will continuously complicate my life and my quality of it.

I’ve been crying a lot lately.  Crying to me means many things.   It is a release and a sense of power.   It is fear and its happiness.  Crying is a sense of loneliness and togetherness.

I cry after yoga which I just returned to after four years of a hiatus…(yay me!!!)  because it’s a release.   A release of stress, anger, and fear. 

I cry because I got through an hour of yoga with success.  I pushed through the discomfort and pain.  I cry because once again I backed RA up into a corner and kicked its ass. 

I cry because I know how much willpower I will have to gather to come to another yoga class.

I cry because I know the pain that is coming after this bout of yoga.  The pain that will make me second guess my successes and make me want to give up.  I cry because I know I’m going go through this cycle repeatedly. 

I cry because I feel lucky enough to have a small support system to get me through the bad times when I know many chronic sufferers do not. 

I cry because I feel alone…almost always.  Even with my small supportive group of loved ones, I truly have no one that fully understands my battle.  I cry because to truly understand chronic illness and RA you have to live it and I do not wish this on anyone. 

I cry because every day there is someone else being diagnosed with an autoimmune disease and they will feel like me. 

I cry because it doesn’t matter how many punches RA or the people who doubt me throw, I will continue to fight back. 

I cry because I know another invisible fighter will come across this, read it, understand it and know I am writing for them…

Inspiration… where??

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

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

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

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

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

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

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

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

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

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

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

Keep fighting… and keep being kind. 

 

 

Self Date 

Self date 

*please excuse errors n typos. Written on iPhone notes in movie parking lot* 

I went to the movies alone.  No hubby, no kid, no parent, no friend… Absolutely no one and I loved it!    This freaked some people the fuck out!   “You’re going to the movies BY YOURSELF?!   Damn skippy I am.   

See .. I love myself.   If I could be friends with myself, I would (technically I am)  I would totally date myself,  if I could.  Now you may think I’m conceited…Nope …I have flaws …huuuuge ones but I kinda think I’m awesome.  It took me along time to get there.  Two all inclusive trips… travelled alone in fact.  Plus also living alone for 4 years helped.

In my late twenties I discovered that I hated myself and my life story.  All of my schooling; psychological theories that I had learned in college started to make sense and made me look at my own life.  I didn’t love myself and was basing all my decisions on what others needed.   I couldn’t even be alone in my own skin.  So I forced myself to spend time alone, away from my community.   Where I couldn’t reach out to anyone and where I had to hear and face my own thoughts.   Through these little journey’s I learned to be alone and be ok with it.  I fell in love with myself. All the good, all the bad and the ugly… I accepted. It was one of the most exhilarating experiences in my life.  

Now…. I’m heading towards my mid-forties.. I have Mr. Lupus and Mrs. RA attached to me 24/7.   These diseases are like fuck’n dogs.  Stray dogs that follow your every single move and bark if by chance you get away (forget their existence) for a few steps.  Plus I hear “momma” five hundred million times a day. Even when her father is sitting right beside her. “Babe” is called at least 25 hundred million times. The phone dings, emails and calls from your elderly mother that can’t hear shit so you repeat yourself so often, you begin to hate the sound of your own voice.   

My career is in the line of “everybody wants something from you” or “everybody wants you to fix their kids and their family”…. and when you can’t do it or you provide sound advice that they didn’t follow and shit blew up…you’re to blame. You mostly hear negative shit all day… everyday … Its exhausting. Its depressing and it overbearing to even the strongest of people.

You need a break.  A break  from everyone and everything.   The silence you were once afraid of … is amazing !!!! It’s like having the greatest orgasm after not getting any for a long time.  A break is a self date.. get dressed up and go out alone. By yourself. You can eat hot food. You can drink at the speed you want. You can even pee by yourself and not hold it …There’s no one you have to impress or hear. It’s fucking lovely!!! And no pressure to put out.

I woke up this morning in pain. It’s been 3 days … no give. My hands are a mess. I’m dropping things … I’m slow.  They ache and lightening pains shoot threw them.    I had a break down in the kitchen with my man cause the pain was unbearable and in that moment I wished I wasn’t myself.    Sooo…I dressed up and I did a few things for people I love and then I bought my ticket.  Cineplex VIP bitches!!!…and off I went.  I ordered wine, nachos with chicken and Guac (gots to go glam) and some popcorn.  I spilled my drink all down the seat and all down the side of my shorts…meh…I just used my eyeglass cloth and wiped it up.  I dropped my popcorn on the floor… all of it. Not one fucking kernel was left in that bucket… I just shrugged it off.. No need to freak. “Not on MY date”.  I watched the movie and had a grand ole time with myself, by myself for myself.  

Now is all perfect and rays of sunshine??… NO.  Life is not all roses and cupcakes BUT for a few hours I got to hear myself with no interruptions and I got to love myself in-spite of the barriers that life and these autoimmune diseases can put in my path…

When’s your self date ?  

“You’ve changed” 

“You’ve changed”  

I hear this a lot. “You’ve changed”. Absolutely I have. You cannot experience life fully without self evolution. Every life experience leaves a mark. 

“You’ve become sensitive”.  “You’ve become bitter”.  “Your anger goes from 0 to 10 in less than a few seconds”.    Yes, these statements are true.   My husband describes the change as ” you were a rock, everything bounced off you, now some things sink in”.  

There are many different facets to me now. I am human, I am an invisible fighter, and I am an invisible hero.  I am a mother. I am a wife, a daughter, and a sibling.   I’m a loyal friend with firm beliefs.  I speak the truth which is hard for others to hear.  I am disabled.  I am limited physically.   I am exhausted.  I am funny and serious.  I am silly and immature (most of the time).  I am sensitive, I am kind, and I have become a woman that I can be extremely proud of. 

I am trying to outlive two auto immune diseases.  I am trying to be physically independent for as long as possible.  I am trying to continue living my life as “normal” as possible while dealing with fear, anxiety, and anger.  Life is no longer the same.  It’s not all shits ‘n giggles.  I wish it were. With or without an autoimmune disease, life is difficult and full of obstacles.   The lighter moments are the medicine needed to keep going.  If these lighter moments are few, life can be unbearable and sometimes it is…

I have become more sensitive.   I have a child and think differently of the world than I did as a non mother.  I am sensitive to all the barriers she will need to overcome and what could harm her.   I am sensitive to world issues and how they will affect me personally as well as others.  I am now in tune with what negativity does to my soul as well as our society. I am sensitive to what I need to keep living and to keep smiling.   I am sensitive.   I do not view this as negative.  

My psyche has changed.   Building a protective wall for issues to bounce off you is a way to keep others at bay.   I no longer want that.  I want to experience life fully by showing the “real” me.

My “human tentacles” are enhanced.  I am no longer concerned about minuscule issues.  What others think about me, or what I wear, or what my body looks like,  no longer matter.  What matters is the person I am, the mother I am, the friend I am, and how I can contribute positively to my community and to society.   What matters is that I continue to be in tune with my body and what it needs.  My diseases are mine, unfortunately.   It isn’t the life gift I would have requested but this is what life has dealt me.  So I must continue my life and acknowledge that these diseases are now a part of me.  However they do not define me. 

 Think of an aching and stabbing pain.   How irritating is it? Think about how you will cope with it?  What does that pain to do your mood?  Are you thankful when it goes away ? How do you feel when others don’t understand the pain you’re enduring?  Now think about dealing with that pain every single  minute of every single day.    Well… that’s my life and the life of those that suffer from a chronic illness.  

Lupus and RA never go away. The pain lessens or intensifies but is always there. It makes you irritable, angry and bitter.  It can make you hate yourself,  others and even your life.   It causes depression and isolation.  You can go through a roller coaster of emotions… experiencing all in just one day. 

I put on my fake face for my husband, my daughter, my colleagues, my friends and even for myself.   But there are times I cannot fake it and there are times where things cannot just bounce off me… so yes I’ve changed and I will keep doing so for as long as I live.  Hopefully for the better… 

 

I can’t do this but I can do that … 

One of the most frustrating comments to having RA is “but you don’t look sick”.  For me that comment is a double edge sword. I don’t look my age. I have amazing genetics and I’m mulatto. My dad is black, my mom is white sooo the saying ” black don’t crack” … kinda true. 

I’m 43. I look 33 (so I’m told) and my body in RA years is 83. “Old … is all that echoes through my veins.. I’m well preserved on the outside while I’m slowly rotting on the inside”… “I’m slowly losing my independent existence and becoming disabled before I’m ready” 

It all started when I went to pump gas. I get out of my car and undue my gas cap … the twisting usually stings a little .. no biggie. I lift the gas pump to insert it into my tank and OUCH. It fucking kills. I can barely press the leaver down. So now I can’t pump gas ? I’m gonna have to get help for this too?  Being an independent individual all your life to now depending on others is very habilitating  mentally. It’s not easy to swallow..

Mrs. RA is rapidly taking normal everyday functions away from me…and the kicker ?? You don’t even realize until you try to complete a task and that simple everyday task causes you excruciating pain.  

I might not able to complete all tasks without help now but what can I still do independently? 

* I can’t do buttons but I can do up zippers.

* I can’t braid my daughter’s hair but I can still brush it.

* I can’t lift a full cartoon of eggs but I can still cook them (even though I LOATH cooking).

* I can’t twist a cap off anything but I can still hold a bottle or glass.

* I can’t lift more than 5lbs with my hands but I can’t lift 70lbs with my forearms.

* I can’t do creative makeup with a stroke of a brush but I can still put it on.

* I can’t run or power walk but I can walk slow with minimal pain for several hours (and then die the next day). 

* I can’t lift weights but I can swim for 500 meters in 18 minutes. 

* I can’t lift someone to safety from the ground but I can perform CPR and First Aid. 

* I can’t do my hair in fun styles but I can complete simple ones.

* I can’t wear 5 inch heels anymore but I make flats look DAMN good… 

* I can’t cure these autoimmune diseases but I can gather all the positives that surround me to help me fight another day.

All in all… a chronic illness has stopped you from doing “that “but are YOU gonna allow it to stop you from doing “this thing called Life?” …