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Chronicles of a Chronically Ill Mommy

Today I Cried

Today  I cried.  And I hate crying. I long viewed it as a symptom of weakness, and I was strong. I was a bad ass. I don't cry.

I was raised to be stronger, better, and work harder. It was instilled in me from an early age by my mother. She knew as a woman and a visible minority, the child of immigrants, I would need to push harder and exceed expectations  to find success in this world.

I learned to never let them see you sweat. Don't show weaknesses​ and work harder if you're unfortunate enough to have them.

Then the world as I knew it changed. Almost 20 years ago I was diagnosed with what will be a lifelong illness, and I didn't bat an eye. I only had a few symptoms, uveitis, mouth ulcers, and a few annoyances, but it didn't affect my life by and large.

One year later, I quit my dream of going to medical school. The medication for my trivial illness left me cornered like a wounded animal. The constant infections and painful side effects induced a form of depression in me. I half-heartedly finished the master’s thesis that was supposed to help me get accepted into medical school and turned away from that dream. How could I be a medical resident when I can't even leave my home without picking up a painful debilitating infection?  Instead I stayed in my condo with my new husband, licking my medication induced wounds. I cried then.

Then a light came into my life. The biologics were experimental back then, but they had few of the side effects of other medications. Although I still remained immunosuppressed, I was no longer debilitated. We bought a new home.  I had three babies. I went back to school for a great job in the medical field. And in this haze of a wonderful life, I could pretend I wasn’t still sick. Apart from my weekly injections and routine specialist​ visits, I was like everyone else. I was able.  I was strong.  Look at all those people running marathons in their 40s and 50s. That will be me when the kids allow me more time!

Today​ I went to the doctor. I almost cancelled the appointment because I was having a good day, but I went anyway to the avoid the cancellation fee. That's when she told me. The pain in my right hand that's been plaguing me, the pain in my foot, the clicky joints pinching my nerves, the steadily increasing incidence and severity of migraines, the tightness in my spine: my illness is no longer invisible to me. It will not be ignored. The medication is starting to fail me. The rheumatologist is changing my medication, but I can no longer deny that, in spite of my best efforts, time and my own immune system will be my enemies.  One day I will be one of the elderly patients with a walker or a wheelchair, struggling to roll over on the stretcher, instead of a vital 70 year old running with his grandchildren and swinging from the monkey bars, like my father.

So as the doctor spoke to me about how my illness is no longer a small nuisance affecting my eyes and joints, but also now affecting my muscles and tendons, and causing migraines, I felt tears starting to spike in my eyes. She suggested consulting a physical and occupational therapist in changing my home to be more joint friendly and changing how I work (as a sonographer, my job requires both hands, especially my right).  The goal, she explained, is to preserve my mobility as long as possible.  This stark assessment of my situation unveiled the truth that I had been hiding in the corner of my mind.  I won’t be running marathons. I won't be in my job into retirement age. I won’t even be opening jars or turning doorknobs.

And I cried because I finally realized the extent of my physical weaknesses.  Pretending they didn't exist and just "sucking it up" is no longer serving any good purpose.  There was no powering through this.  I have to start anew in managing my life in a way I had never truly believed I would have to.  

But I can do this.  Because I'm strong.

Yet another long absence....

When you have 3 kids, a chronic illness, and a job, things get a little crazy.  I always have a million thoughts swimming in my head that I should write down, but life gets in the way.  Today is Victoria Day, a much needed and beautiful long weekend for all of us.  However, it wasn't until Friday, that I realized it was a long weekend, because between work, the kids, and my husband's sudden finding of kidney stones, it's been a whirlwind of a month, to say the least.