“Watch out for Mommy’s bad arm!” This phrase is often heard in my family, sometimes as a light-hearted warning, other times as an urgent cry. Regardless of the tone, it’s a phrase I dread.
For over a decade, RSD/CRPS has been a constant presence in my life, affecting me even before my youngest two children were born. My eldest daughter has faint memories of a healthier me, but I prefer it that way. The blurred recollections are less painful than the vivid ones, a bittersweet reality I’ve had to accept.
I often wish she could remember the vibrant mom I used to be—the one who went sledding, built snowmen, and played sports. It’s a selfish wish, I know, wanting my children to recall a version of me unburdened by disability. Yet, that’s the past, and I can’t return to it.
Mockery of my condition isn’t new. At the grocery store, I can hear people behind me whispering about how long it takes for me to check out. Others sigh impatiently as I struggle to manage my wallet with one hand.
It all began with a “workplace incident” that led to a sprain in my dominant arm, eventually evolving into RSD (Reflex Sympathetic Dystrophy), a chronic pain condition. My nerves constantly signal to my brain that my arm is injured, interpreting all sensations as pain. The question I face daily isn’t whether I’ll experience discomfort, but rather how severe it will be. Will it be manageable, or will I be reduced to bed rest, as my husband puts it? Various factors—like weather, stress, or even no apparent reason—can send my pain soaring, leaving me incapacitated.
There’s no fairy tale ending here, but I persist. I’m a woman, a wife, a mother. Despite the challenges, I dream of becoming a published author, typing out countless words with one hand if necessary. My stubbornness is my driving force; I refuse to let RSD take any more from me.
I don’t navigate my disability gracefully. I’m not a beacon of inspiration or acceptance; I simply endure. I often hide my pain, especially from my husband and children, fearing that revealing the truth might shatter their perception of me. I want them to see me as I am, not defined by RSD.
“Oh, I get it,” a fellow mom said with a roll of her eyes, emphasizing the word “arm” with disdain. Her tone cut through me, and I fought back tears.
At events, I put on a brave face, concealing the agony that gnaws at me. My kids rely on me, and I’ll push through for them, even if it means quietly crying in the bathroom afterward. My husband understands, often giving me knowing glances, his supportive touch a reminder that he sees my struggle.
He quickly ushers the kids out of the van, allowing me a moment to regain my composure so they won’t see the toll it takes on me to be present. We strive to shield our children from the burdens of our realities.
I often omit the truth from my husband too. If I spoke candidly about my pain, our conversations would become unbearable—for both of us.
Shame often accompanies disability. My youngest daughter was thrilled to join a local group, a chance for us to bond and connect with other moms after relocating. However, the dampness of the church basement sent my pain levels skyrocketing. While apologizing to another mom for my struggle, she responded dismissively, “Oh, I know, your arrrrrm.” Her condescending tone left me humiliated, as if she had slapped me.
I refuse to let RSD rob my family any further. I fight to maintain a semblance of normalcy, swallowing tears and telling myself, “You can do this for another five minutes.” My children deserve my best, and so does my husband.
As my youngest reaches for my hand, he hesitates before remembering my wedding rings indicate it’s safe to touch. He holds my hand tightly, smiles, and says, “I love you, Mommy.” In that moment, I know I must push through. RSD be damned.
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In summary, while facing the challenges of a chronic pain condition, I strive to maintain my identity as a mother and wife, despite the mockery and misunderstandings from others. My dedication to my family and my dreams keeps me going, even when the struggle feels overwhelming.