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