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.