So, I took some time off from my blog…just over a year…
I have an unfinished post sitting in my Drafts folder from exactly 6 months ago. I had started telling y’all about the progress I was making in therapy and how awareness was kicking my ass (in a good way).
And, then, things started falling apart…physically…
I came down with that week long, puking, energy-zapping virus. My hair and skin even hurt. It was brutal! Blech.
I finally felt like I was returning to the land of the living when I fell at home and injured my knee. I have a history of knee dislocations, so I figured it would be like all the times before.
I spent 10 weeks on crutches and did some really tough physical therapy.
Doc said I probably would have healed sooner if I had been 20 and an athlete…
I am neither. I’m as far from being an athlete as I am from 20…about 22 years…
I was told I’d probably always have pain due to the damage my knees had sustained over the years.
Bearable so far.
Then, out of the blue, it was NOT bearable…in BOTH knees…and my hands…
Within just a few months, I felt I had aged exponentially. I had truly never felt that bad…IN MY LIFE!
My depression deepened, and the downward spiral began.
Long story, not so short…
4 months after my knee injury, I was diagnosed with rheumatoid arthritis (RA).
Sounds like no big deal until you learn what RA really is…and what it does and can do to your body.
My first treatment offering was chemotherapy drugs.
Lots of baseline blood work, xrays, and ultrasounds done. Instructions about an anti-inflammatory diet. Pain control options. Next appointment scheduled. Hopes for eventual remission.
I can handle this. I’m a smart woman. I’m a mom. I’m a mom of a little one with a complicated condition.
I am the Queen of Research!
Fast forward to 5 days after my diagnosis…
My oldest daughter (11 years old) asked me if she and her sister needed to worry about RA since it can be hereditary.
I wanted to throw up.
I told her that it IS a possibility, but we know what to look for and we’re getting educated. I was confident and encouraging.
Then, I thought about how my 4 year old has said on multiple occasions that her knees “won’t let her” jump like she wants.
The fear started growing.
And I prayed…and begged…and bargained anything to keep my babies from this disease.
I was no longer confident or encouraging.
I felt alone…isolated…misunderstood.
I bottled it all up because I “don’t look sick.”
I turned to journaling as it is something I have relied on for YEARS to help me make sense of things.
It hurt to write.
It hurt to hold a pen.
I sought out positive RA warriors and found very few in the support groups on Facebook.
8 days after my diagnosis, I had a breakdown. At work of all places.
I cried for hours.
I reached out to a few people close to me but was disappointed in their responses. Not that they weren’t trying to be helpful but because they don’t/can’t understand the loss I feel.
Loss of who I am…loss of who I was trying to become…loss of any version of me I thought I recognized…
I feel loss.
I feel LOST.
I picked myself up and put myself together enough to finish my work day and go home to my family. I don’t want to burden them with this so early in our experience with RA.
In 2 weeks I start chemo drugs to try to slow the destructive progression of rheumatoid arthritis in my body.
I’m scared of RA…and of drug side effects…and of the drugs not working…and of feeling utterly alone in my battle.
Because I “don’t look sick.”
I have been incredibly fortunate to have come out of the initial flare. I’m still being monitored, but I didn’t have to start the chemo drugs. Lots of relief there!!!
I’m still in pain though.
Carpal tunnel release surgery did nothing to improve my hands.
So, I’m facing it in ways that I know and can control…an autoimmune wellness program. Some days are better than others, and that is a reason to be happy.
I have also learned from others in the autoimmune disease community:
It really is important to take care of yourself!!!
A really great infographic that was sent to me from Positive Health Wellness is primarily about traveling with RA, but I think it can be applied to living with RA daily.
Check it out!