Self love to fight back

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

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

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

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

Keep fighting, live your best life… oxox

So This is Life 

An Assist Part 2 

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

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

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

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

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

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

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

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

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

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

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

Look around you…

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Keep fighting…  oxox

An Assist

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

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

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

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

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

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

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

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

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

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

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

Gratitude

 

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

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

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

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

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

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

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

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

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

I am living my best life… 

Keep fighting for yours…

The Prognosis

The Prognosis

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

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

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

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

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

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

Those with RA are 2x likely to develop chronic depression

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

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

No more jewels on my hands…

No more shoes…

No more dancing …

No more shopping in malls !!!!

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Three Pricks, Pretty Shoes and an Infected Tattoo

I view myself as a badass. I am ready to fight at any given moment. Whether it’s my autoimmune diseases or a cold. A full work week or some conflict that may unfold… I’m on it. Not because I win every time but because I always get back up.

Especially in fighting Mr.Lupus and Ms.RA, I’m a Ninja. I can totally picture myself putting on a Prada black n fushia blingy ninja warrior body suit. I’d have swords or nunjucks and I’d Ninja the shit out of everything … Mr. Lupus and Ms. RA would come to attack me and I’d Ninja the shit out of them with backflips and high kicks …screaming with determination like MJ does in his “Scream” video. Ahhhhhhhh!!!!

And after I’ve won the battle, I’d limp home, take a 600mg Advil, Epson salts bath, then straight to my bed. That’s right…I’m a badass.

These last few weeks I’ve lost several battles. Not because I didn’t fight well but because I let my stubbornness and pride get in the way of listening to my body.

I was tattooed during the very end of a Lupus flare in the greatest heat wave of the summer and then threw a BBQ the next day. My new ink is on my inner bicep and inner elbow. The easiest place to get infected. I just thought I was such a pro at tattoo healing that I would cover it with a cotton sleeve and be good to go. Well… I forgot that my kitchen is three floors and three steep staircases away from my backyard. I also forgot the fact that I would be going up and down and up and down and UP and DOWN them …for 8 straight hours!! … Nor did I think it was an issue when I had a water fight or when the blood soaked through the cotton sleeve… Yeah … That’s right … I’m brilliant…* insert eye roll*

Not only did the tattoo get infected, Mr. Lupus decided to attack it as well. I am now suffering from a significant Lupus flare that I haven’t had in years…Brilliant…right??!!

This battle knocked me to my knees.. literally. Many moments of tears and feelings of failure. There were a few days I honestly thought I was going to give up and give in. BUT I had to work and parent my child and so I worked and parented my child and fell into bed every night for two weeks. I got up every morning, put on my Ninja suit with pretty shoes and faced the day. Yeah, that’s right…I’m a badass. *Insert another eye roll*

More like Jackass…

I’m actually very lucky that my infection cleared enough to still receive my infusion. If you are on antibiotics and/or have an infection of any kind or have an open wound, you cannot receive your biologic meds. Not once did this cross my mind. I could have really messed up my treatment and set myself back a year of being in remission.

AND on top of all this, I attend my infusion not hydrated enough so my veins collapsed. It took three… THREE tries!!! During the second attempt, the IV went through the vein and ballooned. No one’s fault really but the dehydration didn’t help. You’d think I’d learn… But no… Hydration is the 101 of biologic infusions.

I let my warrior tenancies get in the way of realistic and healthy choices. I rarely think of myself first and I strongly believe in mind over matter however I need to listen to my body. I need to respect the messages it is sending me. I need to hear it… Loud and clear. If I am going to outlive these diseases, I need to put my body first.

Us…the chronic illness suffers, Us…the warriors… are warriors even when we need to lay down or sit or cancel plans. Its ok to say no to a task or no to plans. It is also ok to ask for help. We don’t have to be ON or the badass Ninja 100% of our battle. We are true warriors in just being honest with ourselves and focusing on what we need to continue the fight. We are true warriors for not giving up in whatever capacity that looks like.

So keep fighting, listen and prioritize the messages your body sends you.

Brusied But Not Broken

BRUISED BUT NOT BROKEN

I have tumid lupus. It is rare.  It has all the symptoms of SLE (systemic lupus erythematosus) which range from;

Tumid Lupus attacks the skin from the inside out leaving permanent bruises.  When I was first dating my husband,  many thought he was harming me due to these bruises.    To me, it was actually quite funny.   What else can you do but laugh…

I was in a serious car accident during the first months of us dating.  During my hospital visit, not only the OPP Officer but also the Nurse asked: “what are these bruises!”  (on my right arm) while glaring at my boyfriend\now husband.   We thought this was hilarious because if you know me, you know what if anyone were to physically assault me,  they need to make sure that they’ve knocked me out because their life would be in immediate danger.  I  responded “it’s my lupus” …which I hate because I am stating that I own it, it belongs to me but I don’t want it there.   I didn’t invite it into my body.   I don’t enjoy being its host.    This is also why I give “lupus” some character and call it Mr. Lupus.

It’s become this unwanted guest that eats all your food and drinks an enormous amount of booze and just hangs out causing annoying factors in your life.  I picture Mr. Lupus with his hands in his pants on the couch like Al Bundy, but instead of shouting chauvinistic statements, Mr. Lupus shouts directives to the T cells (lupus cells) “attack the arm … make it burn… tomorrow we attack the back”.  AND when I inject my Methotrexate meds,  I picture that I can hear Mr. Lupus screaming… “RUN!!!… RUN for your cell lives!!… I’ll get you another day my pretty!”.

Oops sorry, that was a huge brain fog… thoughts off track…. LMAO

I couldn’t imagine what it would feel like to have suspicions aimed at you for possibly hurting someone.  Many cannot think outside the box, surprisingly this happens in the health profession as well.  Once Mr. Lupus is disclosed many say “oh that makes sense”.  My husband usually responds with, “if you knew my girlfriend\wife you’d know I’m the one at risk for being harmed” …. And then we laugh and laugh.    Not because any of that would be true and\or happen but because I grew up in government housing, the projects and had to learn how to “whip” some ass if needed.   I am a very strong woman: mind, body, and soul.  I don’t take shit from anyone.   Not from any person and certainly not  Mr. Lupus.

I am going through the longest Lupus flare that I’ve had in a long time, almost 6 weeks.   Mostly due to the inconsistency of the weather.   When Mr. Lupus is active and attacks, I am beyond tired.   No amount of sleep is enough sleep.   Those bruises burn… like a bad sunburn and when really bad,  my skin is on fire or a better way to describe it is… the bruises can feel as though someone is burning me with a cigarette.  This is usually when the lupus is most heightened.   My gums also become inflamed and bleed for no apparent reason.   Mr. Lupus can also bug Ms. RA and cause her to flare as well.   I’m lucky, this time around the Infusions (biologic medicine given via intravenously)  is protecting Ms. RA with “the wall” it has created around the RA cells to slow down the progression and minimize flares.

I have been trying to function with all of this going on.  I’ve been trying to work through it using yoga.  Yoga right now is my BFF.   Other than weekends, I work, do yoga, and go straight to bed.   There is not much more I can do right now if I want to continue to win this battle (flare) against Mr. Lupus.   You only heal when you sleep.

The trick or ammunition to use in fighting a chronic illness and\or auto-immune disease is living your life.  Even if it is in small spurts.   Live, laugh and love is the key.   I’ve gone camping, even though I hate… LOATH dirt… to be with loved ones and around laughter.   I have gone to yoga 4 times a week for the last few weeks and used my body to its limits. This has caused me to gain strength in body and mind.   I have also broken down and cried cause some poses cause me a great deal of pain.   I cry and get back up, to try again.   I have worn heels (if only for an hour) and felt like my old self.  I have socialized and loved and laughed.   I also strongly believe in mind over matter and my thoughts continue to be “I am genuinely bruised but I am not broken”.   I can do this…

I am living my life the best way I can while fighting these unwanted diseases AND right now I am winning.   Keep fighting… you may be bruised but you are not broken.

 

 

Yoga, My beautiful Hell

I’m not thin.

I’m not a size 2 but I can yoga the shit out of you.

I’m not as strong but I’m not weak minded. I use my willpower to bend the move, keep still and silent.

It hurts like hell and I have anxiety every time I’m near a practice. I know it’s gonna hurt like when a mouse gets zapped by the entrapment.

My joints don’t want to hold, bend or stretch. They prefer to be brittle and motionless.

I make myself go so I can be free. My body, mind and soul can just let be. Just for an hour or so and maybe three times a week. I feel whole and not like some invisible diseased freak.

I shed a tear every time at the end because I know in a few hours the pain comes back again… It doesn’t keep me away for very long because I am stronger than most.

I am an invisible superwoman. Not to boast but to encourage others to find their invisible cloaks.

Keep fighting. You will find your way.

RA feels like…

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Keep fighting. You’re worth it…

1 year celebration

My first blog was posted exactly one year ago today.   

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

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

WOO HOO!!! 

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

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

In much appreciation, 

Tosh  oxox