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.