Neuropathy - Hereditary

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Neuropathy - Hereditary
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    Community Voices

    I wish I was normal, whatever that is. It’s so hard to keep pushing, when your body is telling you to slow down. Your mind is racing, you can’t stop the thoughts. I would be more approachable if I didn’t have resting pain face. I hide it so well that a lot of people don’t know the truth. The truth is, my spine is deteriorating and there’s nothing I can do to make it better. I can take meds, do stretches, but it still feels like my back is broken. Shattered into tiny pieces that make up my spine. There’s no such thing as comfortable when you have a sharp, shooting, gnawing pain that is now making your legs go numb. I’ve told my doctors but they say I’m too young for surgery. I think now is the perfect time, my body is still young enough to heal! I can’t stand up straight, I can’t even stand up to shower. I feel like an Emmy Award Winner with he show I put on day in and day out. The smile on my face that never fades, bc I don’t want my friends and family to leave me alone and to deal with this pain alone. I also don’t want certain people to tell me nothing is wrong, when clearly something isn’t right. I’m hoping for some sleep tonight, and that my pain killers get filled tomorrow. Popping meds like skittles isn’t ideal, but if you have no other solution for me, I will take them until the pain goes away. Thank you Big Pharma for making me a drug addict at the age of 13. I’m now 30 and I know these meds have taken a toll on my health, but there’s only so much I can do on my own. I feel like a burden on those I love. I feel like a liar every time someone asks how I’m doing. But I know you don’t care enough to know the whole story. I let you know what I want you to know and nothing further.

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    Community Voices
    Community Voices

    I never remember when I fall asleep, I just wake up to toss and turn. The pain in my back and legs makes it almost impossible to get comfortable. The fibro fog when I actually wake up, or give up on trying to sleep, usually turns into a horrible migraine. I over exerted myself Tuesday because I went to a hockey game. It was great, I saw the Patriots and then the Bruins won. But it’s Thursday and I’m still paying for it. When I woke up this morning, everything was blurry and my head was throbbing. Left for work late, I didn’t even care at that point. Sitting at my desk, I could barely keep my eyes open. Nothing worse than having a migraine, fluorescent lights above, and a bright computer screen to make my worse. I’ve done everything I could think of. I’ve taken medicine, I’ve eaten, I’ve been drinking water all day, I have the Aculief on... and still no relief. Not even my prescribed meds are touching this. The pain in my body is beyond a pain scale. It’s off the charts. I wish I could be normal, whatever that is. I’m sick of being sick.

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    Letter to People Who Tell Woman With Neuropathy to Smile

    It happened again today. As I was packed into a 6 train that was stalled in the station, a man looked up at me from his seat and said “Excuse me, you lost your smile.” Obviously satisfied with a line he must have said a thousand times (and no, it wasn’t a pick-up line as he was seated next to his wife), he repeated himself when I failed to acknowledge him. I made brief eye contact and gave him a half-hearted “Yea,” before looking down again. It’s happened before. Sometimes when I’m rushing to or from wherever I need to be, a construction worker or a passing stranger will holler something to the effect of “Where’s your smile?” or “It wouldn’t hurt to smile.” These people may think they are cheering me up, or they might just be ribbing me for looking like a sourpuss. But what they don’t know is that I’m not smiling because I’m in pain. While I may look fine, I’m suffering from an invisible illness. For the past year, and on this particular day when I “lost my smile,” I’ve seen doctor after doctor and taken medication after medication (21 pills a day now to be exact) for something called neuropathy (nerve damage) of the trigeminal or mental nerve. On a daily basis, the pain in my lower jaw/chin area ranges from a deep aching to a tingling, burning, sharp, stabbing pain — sometimes all at once. The pain usually escalates as the day goes on, sometimes ending at an 11 on the pain scale by the time my husband and I get home from work and begin the herculean task of getting our 2-year-old to bed. I regularly burst into tears at night after trying to conceal my pain at work or in social situations. I cry not just because of the pain, but also because of the effects it has had on my life, including the potential inability to have another child because of all the medications I take. I know there are a lot of people like me out there — people who look “normal” but are suffering from intense pain — whether physical or emotional. So before you make a sarcastic comment to a stranger on the subway, just remember that you never know what they’re going through, and by highlighting their unhappiness, you might be exacerbating something they’re trying desperately to hide. The Mighty is asking the following: What’s one thing people might not know about your experience with disability, disease or mental illness, and what would you say to teach them? Check out our Submit a Story page for more about our submission guidelines.