Back Pain

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Back Pain
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    Community Voices


    I just learned that my nervous system is really Sensitive and giving me pain in areas that doesn’t need to be in pain.
    Even though I’m in pain 24-7 my nervous system thinks other wise.. do you know any online support groups ! Apps! Websites on how to regulate your nervous system.
    #BackPain #Pain #ChronicPain #Depression

    3 people are talking about this
    Community Voices

    Introducing myself

    <p>Introducing myself</p>
    5 people are talking about this
    Community Voices

    What is everyone doing in the middle of the night ?

    I know with my pain I haven’t slept a full night in years! I used to be accused of doing drugs that would make me stay awake all night, nope, I have the worst back pain and restless leg syndrome ever, and when my RA flares up, boy watch it, because I am just in tears and want the lower half of my body to be removed. So I pace a lot and clean in the middle of the night, listen to my favorite Life Coach on his Podcast Dr. Mike Bayer. Or I sit and color. But I might have become addicted to The Mighty!! :)

    8 people are talking about this
    Community Voices

    Moving forward can mean leaving the past behind. We’ve come so far and yet we still have so much to learn. What is something helpful you’ve learned?

    <p>Moving forward can mean leaving the past behind. We’ve come so far and yet we still have so much to learn. What is something helpful you’ve learned?<br></p>
    8 people are talking about this
    Community Voices

    Last night was hard. I got 3 hours of broken sleep and kept waking up in pain. At one point I woke up super hungry so I ate some leftovers but an hour later I ended up getting sick. Then I slept for about a half hour and woke up with terrible back pain that was a 8 out of 10. I took a Percocet and a baclofen and am hoping to have relief in an hour or so.
    Last night was very different than the night before when I got 10 hours of sleep. I knew I would not get that much sleep 2 nights in a row but I was hoping for some restfulness at least. No such luck. Oh well. I probably should have taken a haldol last night.
    Chronic insomnia sucks so much. It's always a struggle for me to get any good sleep at night and I have trouble napping during the day especially since I have to be cleaning my apartment and making calls to other places seeking somewhere to move to next month. I feel like I can't catch a break. I need a vacation from my life for just a day or two to catch up on functioning even halfway normal.
    I wish I had some veggies to cook. I'm really craving them in some kind of sauteed dish. Or slices of veggies with hummus. I've got hummus and some mini garlic naan slices so maybe I'll have that for lunch today. My tummy might be able to handle it.
    Hope you are having a good weekend so far.

    2 people are talking about this
    Community Voices

    Last night

    So I ended up falling asleep before taking my Haldol. I think I was asleep by around 2am. I had VERY wild dreams but thats what I like best about sleeping, the dreams are like little movies for entertainment. But guess what? I woke up at NOON! I only woke up during the night 3 times and was able t get back to sleep super easily.

    The only downside it seems is that I slept thru 2 doses of Percocet and Baclofen for my back pain and spasms. When I woke up WHOOOO BOY I was hurting like hell. But I felt rested and alert and happy even!

    This happens maybe once or twice per month where I sleep for what seems like forever. Its my body's way of catching up, I think. I'll take it, its the best I can hope for.

    Yesterday night I took 4mg of Haldol and didn't sleep. I think the anxiety was too much.

    3 people are talking about this
    Community Voices

    Let life surprise you…what’s an obstacle you have that is holding you back from happiness?

    <p>Let life surprise you…what’s an obstacle you have that is holding you back from happiness?<br></p>
    1 person is talking about this
    Kathleen Friel

    Changing Health Perspectives With Cerebral Palsy and Metastatic Breast Cancer

    “It’s best to institutionalize her. She has no rehabilitative potential.” This is what a neurologist told my parents 47 years ago after I’d failed to meet developmental milestones related to movement. I was then diagnosed with cerebral palsy (CP). My parents found me a different doctor, a doctor who recognized my full potential — which changed the trajectory of my life. CP stems from a developmental brain injury that has gifted me with garbled speech, an “abnormal” gait, and reduced fine motor skills. My disability is obvious to people when they meet me. They may not know what “CP” is, but they know there’s something up with me. Often, they assume I am neither intelligent nor capable. Growing up, school was a great opportunity for my intellectual growth — and for teaching me how to live with an obvious disability. Particularly during school transitions – like starting at a new elementary school and then moving on to middle and high schools – I learned the importance of educating others about my cerebral palsy. Education was the key to acceptance. My mom would come visit my class after I’d moved to a new school. We would tell the story of my life with CP: the multiple muscle and bone surgeries I’ve had to straighten my legs, the frustration of not being able to speak clearly, and the reality that I wasn’t much different than other kids. Each time we offered one of these educational visits, my life at school rapidly improved. Kids stopped teasing me. I made more friends and felt less lonely. People simply got it. I became more outgoing and more involved in school activities. My everyday life with cerebral palsy is quite ordinary. I take out the trash. I do laundry. I sleep late on weekends. To me, my body is normal and my life is normal. My speech sounds perfectly clear in my head. I’ve built a life of convincing people that my visible and audible “impairments” do not affect my intellect, my potential, or my freedom. This simple fact seems to mesmerize many folks. I went to college and then graduate school — usually as the only student in class with an obvious physical disability. I earned a doctoral degree in neurophysiology – the study of how the brain works. Now, I run a research laboratory at an Ivy League institution in New York. The goal of my lab is to develop innovative interventions to help people with cerebral palsy optimize their fine motor skills. My many wonderful colleagues and I have made substantial gains in understanding how the brain controls movement in people with CP — from which we can build more effective interventions. Not only do I strive to help kids improve their movement, but I also hope to show them and their families that they can live happy, exciting lives. I want kids with disabilities to know that even if society judges them for their visible disabilities, they may derive abundant joy from proving people wrong. In July of 2018, though, I had a sudden bout of severe back pain. After a couple months of inconclusive medical testing, I was diagnosed with metastatic breast cancer (MBC). Before a tumor was visible on a mammogram, breast cancer cells had found a home in my spine. As a friend with MBC characterizes this diagnosis, “Do not pass go; do not collect $200.” Now what? While early stages of breast cancer are curable, MBC is terminal. As my wonderful oncologist described it, once cancer cells metastasize beyond the breast, we MBC patients have “cancer dust” forever circulating through our bodies. Eventually, these “dust bunnies” claim eminent domain over our organs. Therefore, we often must be on strong treatments for the rest of our lives. The average longevity of a person with MBC is about two to three years — although many live longer. I’m lucky that I’ve already beaten the odds. MBC treatments do not cause some of the stereotypical chemotherapy side effects. I haven’t lost all of my hair, and I haven’t lost weight. MBC isn’t throwing me any bones, though. My MBC is mostly invisible from my appearance, but I struggle with joint pain, nausea, and fatigue — and there are so many more symptoms I have. After one treatment, I lost my fingerprints. My medications make it even more difficult to speak clearly, which further isolates me when there’s so much I want to say. I’m now in a world that contradicts the lessons of my life with cerebral palsy. It’s quite the conundrum. I’ve spent my life proving to people that my disability does not affect my intellect or potential — which is true of my CP — but MBC is an invisible, terminal condition that affects multiple aspects of my life. Christine Miserandino popularized the “spoon theory” of life with chronic illness in which energy is represented by “spoons.” Let’s say that a healthy person has 30 spoons of energy per day. Dressing and showering may take two spoons, a workday may take ten spoons, and so on. People with health challenges, though, might only have 10 spoons per day. We may often have to make careful choices about how we use our “spoons.” If going to a doctor’s appointment takes five spoons, then we have to figure out how to accomplish the rest of our day with only five spoons left. I’ve tried to use my favorite childhood tool — education — to improve my relationships while living with MBC. I’ve educated people about what my diagnosis means, my prognosis, my treatment plan, and my needs. However, some don’t believe it, and they’ll say, “You look fine!” Living with MBC can be isolating, but I’ve now spent more than half my diagnosis in a pandemic, which exacerbates the loneliness. In my work, I continue to write grants for projects I likely won’t live to complete. I feel driven to make as big an impact as possible in the world knowing that my window of opportunity could close at any moment. I want to be remembered as the “cool aunt” by my nephews and nieces, though I’m their only aunt who doesn’t have a dog. It may be a hard sell. I’ve maintained an active life after my MBC diagnosis. Nearly a year into my diagnosis, I earned my black belt in taekwondo. Still, MBC is a beast. When my MBC is visible to others, it is awkward – I think it’s a reminder of my mortality. I’ve lost several meaningful friendships with people who say they can’t bear a “front row view” to my struggles. I get it, but it stings knowing that their discomfort overrides their value of my friendship. With both CP and MBC, one thing I’ve always known is that my true friends are the real deal. Their love, acceptance, and good humor keep me afloat. Here I am, needing folks to understand the severity of my MBC diagnosis after spending a lifetime teaching people that my CP does not affect my abilities. This health challenge has gifted me with several lessons. Talking about health conditions should not be taboo. Whether a person has a visible or an invisible health condition, listen to them. Everyone is likely living with struggles of some sort. Acknowledging our needs, our talents, and our mortality gives us all space to live authentically. We all deserve this sacred gift.

    Community Voices

    Uphill battle

    Bit of struggle again.

    My hearing is going again. The doctor doesn’t seem bothered because it’s not blocked and doesn’t look infected, and said to come back if it continued. It’s already been a month with it and it’s not gone away. Its incredibly frustrating when it goes. Its disorientating. And surely no visible cause is concerning? Especially given I haven’t made it a year post-op yet.

    My heartburn and acid reflux have taken a sudden turn for the worse, around 5 years into suffering with it. I was almost constantly taking gaviscon over the last few days after I came back from my holiday, so I booked an urgent appointment because I couldn’t live like it when it was affecting my sleep too. I’ve got a prescription and they want me to have a OGD. I don’t really see why, because it’s genetics.

    I also caught covid again. I went out to a concert and that’s all it took. I however kept testing negative from the Tuesday I first was symptomatic, until the Saturday when I finally tested positive. The one time I went out somewhere that had a lot of people. (Disclaimer: I am fully vaccinated, have the booster and I had covid before (another disclaimer: back when the vaccines weren’t around and my entire family were basically key workers)).

    Also had a bunch of other minor illnesses and general conditions/ chronic pain I have getting worse. I think it’s gonna be sick girl summer.

    #ChronicPain #BackPain #HearingLoss #GastroesophagealRefluxDisease #Heartburn #AcidReflux #COVID19 #Postop #ill #hardtimes

    2 people are talking about this
    Community Voices

    This gem shares so much wisdom. I grew up w/ the rhythmic, lyrical words in Dr Seuss books & enjoyed the beautiful pictures but there was so much more

    <p>This gem shares so much wisdom. I grew up w/ the rhythmic, lyrical words in Dr Seuss books & enjoyed the beautiful pictures but there was so much more</p>
    6 people are talking about this