brain lesions

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    Hello! Intro from Jaybee

    Hello This is Jaybee I just stumbled onto this pageand looks like I have found a hidden treasure of people I can relate to! I'll give you an idea about my health. I am a #breast cancer late stage #survivor with many side effects that did not end after 1 1/2 years on chemo I had a mastectomy and reconstruction and my lymph nodes removed from the area From my hair to my toes I have a list of problems brought on by high doses of chemo or by removal of #lymph nodes Without enough lymph nodes I swell every day from eyelids to uvala to feet toes thighs calves knees and belly, even armpits! (not all of them everyday or all at once) But every week all areas have swelled at least once My legs turned red while on chemo and got neuropathy they have stayed that way I have chronic pain everyday My ankles/tibia just above foot front on both feet feel like they are in a vice grip and the range of motion is limited I have #stenosis from the neck to the hips and at times this is excrutiating pain I had a steroid shot in Nov.. I have lots more going on; it's hard to remember them all. Having a sense of humor helps #ChemoBrain #BrainLesions #SpinalStenosis#ChronicIllness #ChronicPain #Spondylolisthesis #VasculitisSyndromesOfTheCentralAndPeripheralNervousSystems, ,
    Other , #graves , #barretts #HairLoss , #Narcolepsy ##Fibromyalgia #bunion #Vasculitis #panninculitis    #limpodermatosclerosis   #edema

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    Multiple Sclerosis: When People Make Judgments About My Pain

    Today I woke up knowing it was going to be a rough day. My pain was somewhere between a grimace and the crying face on the pain scale. I don’t even use numbers anymore; my face tells the story. But I had a meeting today, so I woke up, showered then lied down for 10 minutes. I got up again, put on half of my makeup and lied back down for 10 minutes again. Then I got back up, did the other half of my makeup and rested for another ten minutes. I got up again, got dressed and rested for 10 minutes one last time. Finally, in my last brazen attempt to make it out the door before I gave up all hope, I packed my lunch, gathered my purse and got into my car. But I had to pick up my prescription before going to work first. I decided to pull into the disabled parking space because walking from my car into the store was going to be a challenge — making it all the way back to the pharmacy and the impending line was going to be an even larger one. I don’t always park in a disabled parking spot. Actually, I rarely do. But yes, on bad days I use it. I slowly walked through the store with the frailness of someone three times my age. I stood in line with my legs fighting against me. They were practically screaming, “Sit down, right here!” “Not on the floor,” I argued against them. I just needed to make it back to my car. I got my prescription and said I didn’t need a bag, knowing I would be taking a pill immediately. As I slowly teetered my way back to my car, fighting a war against my own body to put one foot in front of the other, I opened the pill bottle, grabbed my water from my purse and took one quickly. The next 15 minutes while I waited for relief was going to be a challenge. As I walked towards my car, two young boys behind me were talking about drug addicts. The conversation caught my attention because I work in the substance abuse field. Behavioral health is my passion. But as I listened closer, this wasn’t just any conversation. They were talking about someone. Clearly, they couldn’t be talking about me. Or were they? As I opened my car door, it became apparent they were talking about me. Loudly. For anyone within earshot to hear. And before I had time to close my door, one of them yelled, “You aren’t handicapped, you’re a junkie.” I sat there for a few minutes. I was on the verge of tears, wondering how it was possible someone could lack even the most basic amount of compassion. This morning, I fought against pain those young boys have likely never experienced, let alone suffer from chronically. I realized it took me nearly an hour longer than normal to get ready today because I simply couldn’t keep going without a break. 40 minutes were wasted because I needed to lie down. 40 minutes! And they had the audacity to place judgment over me for a five-minute snapshot of my life that they witnessed. As I was sitting on my desk later, my feelings rotated between anger, sadness and embarrassment. I wish I would have said something. I wish I would have been able to construct a sentence that would provided them even the most basic amount of insight on what I was feeling. I wish I could have told them about optic neuritis and neuropathy. I wish I could have shown them the lesions on my brain. I wish I could have shared the story of waking up blind only to hear the words, “You have multiple sclerosis.” I wish I could have told them about what it feels like never knowing which body you’re going to wake up to next morning. I wish I would have told them what it’s like to spend your life being poked and prodded and being emotionally, mentally and physically exhausted as you fight against your own immune system. But I couldn’t. I didn’t. I wasn’t ready to hear that. I didn’t need to hear the uneducated, uncompassionate banter of those young men because today I’m already out of spoons. 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? If you’d like to participate, please send a blog post to community@themighty.com. Please include a photo for the piece, a photo of yourself and 1-2 sentence bio. Check out our Submit a Story page for more about our submission guidelines.