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When you are depressed or in pain what would be the most supportive thing a friend or loved one could say to you? What would be the most comforting?

I can get pretty bad social anxiety these days, and I always fear people will say “What have you been up to…?” I know they would mean well, but the honest answer would be that I've been busy going to doctors, PT & therapy appointments..and practicing self care… treating pain in four parts of my body, off & on for hours each day. But I really don't want our conversation to focus on discussing this…as I often feel a need to explain further, answer the inevitable questions and hear their concern, and often sympathy I’m definitely not looking for!

Even if people say positive things like “You look great!” I think… if they only knew how I feel INSIDE…(I have been dealing with numerous Invisible Illnesses)

Can you relate to these?

What would you like people to stop asking? What have people said that you felt was callous, unsympathetic or uncaring? What words have been the most hurtful?

When you are struggling, what can people say that would help the most? How can they let you know they’ve got your back? What if you could have someone say (or not say) anything you want to make you feel better…What would you want to hear?

Please share your responses to the question(s) that speak to you the most ….your experiences, and what you would (and wouldn't!) like to hear. I find that in hearing other members' responses to them they often could basically be telling my story and we are on similar journeys. I have found this opportunity to empathize with each other here helps me feel less alone!


👍We just went soaring past 2,500 members!👍 It seems that I just posted about 2,222 so recently. I am humbled and grateful that you all have joined me here and are sharing this journey connecting with each other! It’s become more than I even imagined when I started this group a few years ago…let’s keep asking for support, offering it, and empathizing & being there for each other! 🤗🫶🩷🤝👏🤝🙌🤝🩷🫶🤗

#MentalHealth #Depression #Anxiety #Disability #ChronicPain #ChronicIllness #Selflove #Selfcare #BipolarDisorder #BipolarDepression #ADHD #ObsessiveCompulsiveDisorder #COVID19 #Migraine #Headache #HIVAIDS #PeripheralNeuropathy #BackPain #Addiction #AddictionRecovery #IfYouFeelHopeless #Hope #CheckInWithMe #InsideTheMighty #MightyTogether #DistractMe #mighty #conqueryourmind

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Reflections on a Cancerversary

Part 1 of 2 So much can happen in 4 years. It’s the typical amount of time that elapses between a child and adult. Teens enter college still under the wings of their parents and leave four years later expected to be fully functioning adults in society. In four years, many relationships can come and go. You might meet your best friend, lose a partner, make a new family, or cut ties with a toxic relationship. Not knowing if I would even live for five more years, four years has felt like a whole lifetime. I have lost and gained so much, but I will never be grateful for cancer.

1,461 days ago, my life changed in the blink of an eye, and I didn’t even know it at the time. And it all started with my eyes, well my head, but that day, August 26, 2019, I attended my first day of orientation for a new job. I was finally going to make it to the classroom as an assistant teacher at a special education school. The nerves were ever present as they are with any new job, but there was more going on. A summer full of horrendous headaches, a syncopal (fainting, but I’m convinced seizure) episode, and more symptoms piling on top. We finished the planned material early and had the choice to stay around and get to know your classroom, but I needed to rest. I had a brain MRI scheduled in 2 weeks, but that night something was wrong. I was seeing spots and in all my years of pediatric ophthalmology every 3 to 6 months, this had never happened. A message to my doctor prompted a phone call not even a half hour later (even though it was around 10 pm) and so it began.

I went to the hospital in an uber with a book, phone charger, and not much else, prepared to be told it was just a headache and try to sleep it off. For those first few hours, I didn’t feel like I would be taken seriously, but after a CT scan when a large team of doctors and PAs from neurology came in, things changed. A spot on my brain. Once I was passed the original shock, I called him “The spot on Aylat.” But that spot opened the door to an unknown world that I was not prepared to enter. The problem is you don’t have a choice. It’s fight or die. There were different opinions among all the doctors before and after surgery. It could be anything, an infection that just needs antibiotics, benign, cancer, the answer just couldn’t be found without opening up my skull to look inside my brain. My neurosurgeon, as stereotypical as you can get, had a very low bedside manner but did the job she set out to do. She’s seen hundreds of brains and brain lesions and warned us of the road ahead, convinced it was cancer. The neuro-oncologist was more passive, reassuring us that this was unlikely to be cancer or need further treatment. The pathology took longer than expected which made appointments feel a bit premature and riddled with anxieties of what if because the experts didn’t even know. Then that fateful day. September 17, 2019. A call from the neurosurgeon. No appointment, no social worker, no nothing. Just an emotionless statement: the pathology is back, and it is a rare aggressive cancer called angiosarcoma, the cancer center will call you to schedule an appointment. The record in my chart states that she asked if I wanted her to inform my parents and I declined. I cannot tell you what else happened that day because it has been erased from my memory. I have no recollection of calling anyone else, but I am certain that I did.

Remember that job I had just gotten, yeah, that was no more. It was replaced with weekly appointments, hair loss, sickness, and isolation. The hospital became my one and only job, but unfortunately, they didn’t give me a paycheck, they just gave me hardship and bills. I lost any sense of normalcy of a 24-year-old trying to fulfil her goals of being a teacher and making a life for herself in a new-ish city.

In four years, I have had over 93 clinic appointments with oncology (medical, neuro, cardio, radiation), 6 inpatient stays, 12 Emergency room visits, 20 Brain MRIs, 9 PET Scans, 15 Chest/Abdomen/Pelvis CTs, well over 75 blood draws for CBC’s not to mention other blood draws inpatient and in the ER, and more. While it is starting to slow down, it will never stop. What no one tells you is how hard life is in survivorship. Don’t get me wrong, life during cancer treatments is living hell. Every treatment you get nurses must wear additional protective gear or radiation and radiology techs are required to leave the room and watch you behind a plexiglass window. It is designed to kill the cancer, but it doesn’t spare any healthy cells. The massive caution signs and giant warning labels make you question if this is really worth it. Yes, survivorship is worth it, but yes, it will always be an uphill battle.

When you google angiosarcoma (pro tip: don’t google your diagnosis, but also, I can’t take my own advice), the prognosis is


Alive and Well: Living with Migraine and Fibromyalgia

Part 1 of 3 I hurt. All over.

For those with migraine and fibromyalgia, these two sentences resonate as deeply as the pain. These disorders disrupt our best intentions, sideswipe our most earnest attempts, and exclude us from our very lives. Living with loops and rhythms pulsing our nerves into rebellion, we become parts of pain and parts of cycles, with parts of ourselves fragmenting as fast as fortune fades. In this insidious process, flare-ups destined for landfill instead become recycled, composting the remains of last night’s migraine attack into widespread aches, fogs, and pains.

So, what are we left to hold? Depleted energy? Check. Canceled plans? Check. Invalidation from others? Check. “Character building opportunity” that beckons trauma and tumult more than it does grace and growth? Check. If excitement is at the core of every bucket list, we check boxes far and wide in our brain’s pursuit of hyperexcitability.

What purpose does this neuronal hyperactivity really serve? Why do our brains become fixed in repetition? Is this migraine-fibromyalgia relationship causal or concurrent? And, can we intervene and regain stability during this relentless process in our efforts to be alive and well?

Double Trouble: Migraine and Fibromyalgia

Migraine is a debilitating spectrum disease characterized by a range of symptoms, including severe head and facial pain, sensory sensitivities, nausea, and fatigue. It not only debilitates, but drains our resources—emotionally, physically, and financially. Living a life dictated by pain is also not unfamiliar to those with fibromyalgia. Widespread body pain and sensitivity, cognitive difficulties, sleep disturbances, and mood issues mark both disorders, decreasing quality of life and increasing psychological distress.

These experiences are multi-faceted—the emotional, physical, and mental spaces affected occupy the deepest crevices in my psyche. The talk bustles. The noise riles. The movement boils. The commotion calls my attention, whether or not I desire the limelight.

Through migraine and fibromyalgia I’ve experienced these biological performances, invisible to the world around me, yet ever-present and commanding within me. While I may search high and low to provide the graphs, charts, and visual imagery I may feel necessary to animate silent suffering, the evidence sometimes lands on disbelieving ears. Not only has the pain I’ve experienced been casted as unreal, but I’ve internalized this stigma and felt unreal.

No matter the landscape, migraine and fibromyalgia are a common occurrence—30% of people with migraine have fibromyalgia, and 50% of people with fibromyalgia have migraine. Although migraine is generally treated by a headache specialist, and fibromyalgia a rheumatologist, both disorders share hyperalgesic properties and connectivity abnormalities. In addition, both migraine and fibromyalgia patients may experience one particularly troubling type of neuropathic pain: allodynia.

Ow! But How? Allodynia, Another Type of Pain

Simply put, allodynia refers to pain without the presence of painful stimuli. Pain when combing one’s hair, being lightly touched, or coming into contact with hot or cold stimuli describe the nuances of living with allodynia.

We are often told how wise our bodies are, but where does wisdom lie in the transformation of sensation to pain? What evolutionary advantage do we possess? Though I can intellectualize the insight and value pain offers, feeling sick and debilitated hasn’t felt like a competitive advantage for most of my life.

Pain marks me—my years, months, days, hours, minutes, and seconds. Outrageous? Check. True? Check. Pain limits, isolates, and rules my parts. It is a captain, leader, mentor, and delusional abuser hopped up on power. Pain is a problem, and pain is an answer.

It’s a fault line for those with chronic pain—a delicate balance of detachment and embracement we straddle time and again. We don’t want to lose ourselves, yet finding ourselves often means we find pain. What pain is and is not can easily become who we are and who we are not. Limitations can become selves and selves can become constrained.

Approximately 80% of people with migraine have experienced the limiting and painful allodynia during an attack. People with chronic migraine are at a greater risk for developing allodynia in between attacks, otherwise known as interictal allodynia. Why? When attacks are so frequent, the brain does not have adequate time to reset and resume normal function. As a result, it remains in a state of hyperactivity, and a phenomena known as central sensitization ensues.

Central Sensitization at Grand Central Station

When I consider the parts—migraine, fibromyalgia, and allodynia—I consider the deeper roots and mechanics ca

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My Not So Mighty Moment

When I was in high school, a middle aged teacher showed up to class with her hand in a cast, courtesy of a wild bowls incident. Being an all-girls school, naturely this was a source of gossip. After some discussion, we crowned it the 'Most Geriatric Injury Ever Conceived by Teenage Minds'.

Fast forward to the present, and here I am, ready to steal her crown!

Enter Taryn, the Yoga Clown 🤡

Last week, while channeling my inner 'Warrior Pose' at my local MS Centre, I felt a small pop in my
chest that definitely wasn't my inner peace bursting forth. By the end of the session, my neck was brewing with what felt like the beginnings of a migraine that could rival a Shakespearean tragedy. So I did the logical things—a hot bath with lots of magnesium, dinner, and an early night with dreams of being a yoga guru.

Clearly, the Universe had other plans...

I woke up feeling like I'd been rear-ended by an invisible truck. It was like the whiplash injury I got in a car accident a few years back, but with a hefty dash of facial acrobatics. Pain in the left side of my neck, ear, sinuses, and teeth—because apparently, you can sprain your face doing beginner yoga.

As I start to feel less like a human pretzel, I can't help but chuckle about the absurdity of it all. So, to anyone needing a laugh: if you ever feel silly about an injury, just remember me – the person who went full Cirque du Soleil with her face in yoga class 🤗

#DistractMe #CheerMeOn #ChronicFatigue #ChronicFatigueSyndrome #MyalgicEncephalomyelitis #Fibromyalgia #Headache #Migraine #Endometriosis #PolycysticOvarySyndrome #MultipleSclerosis #BackPain #Laugh #Meme #BruisedEgo

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Keeping up w/ meds, pharmacy & insurance can be grueling. Yet over time I’ve embraced them. What is your relationship w/ your meds? Love? Hate? Both?

Recently I've had a change of perspective about all my meds, doctors, specialists, hospitals, psychiatrist, therapist, physical therapists, pain clinics, caseworkers, and the many types of treatments I get. I have come to be thankful that I have them all and no longer resent them, no longer resent how physically and emotionally draining they can be, no longer resent the days I have lost when I could be working…or playing! I stopped venting and complaining about them in the bulk of my conversations, and making them the focus of the (often limited) emotional energy I do have left many days.

It took awhile and some really tough and scary times…surviving two pandemics: being HIV+ in the 80’s, and many serious complications from it; and then decades later I got Covid that had me taken by ambulance to the ER with over a dozen symptoms, and having to learn how to walk again in rehab; heart surgery; multiple concussions; being in a coma for 4 hours after and accident; mental health hospitalizations…including the arrests I had during two manic episodes; and struggling with addiction. It took really stepping back away from it all and then suddenly I came to find a new perspective, came to the realization of how blessed, loved…and yes, lucky I am. I now choose to see all I deal with currently as tools, resources, and opportunities that keep me alive, help me heal, stay balanced, and I can now see how they are leading me to good health and having the opportunity to thrive.

Yes, I do have well over three dozen doctors, departments, and health care providers in my phone, and probably have seen or worked with over 20 this year, averaging 4-6 health appointments a week for most of the last year. And yes, I take 16 medications, and right now I have a few challenges that have created limitations every day, needing the assistance of mobility devices, needing rides most places and when I drive now using handicapped parking spaces. I stopped feeling sorry for myself and playing the victim and instead choose to smile and laugh during health appointments, joking about the crazy, big, obnoxious migraine glasses I wear everywhere and sharing how I can't wait to run a marathon with others who I meet that are also struggling with physical health limitations. But am I joking? Do I really see myself running, rock climbing, kayaking, going camping and getting back on my favorite hikes again? I choose to hold on to that hope and believe I can overcome the obstacles in my path.

I am realistic though. I also accept that this might be unlikely, and that I will have many of my current health challenges the rest of my life. Yet I give thanks every night for another day, the blessings I do have in my life, the relatively good health I do have in spite of it all. I choose to make sure to observe those around me at the hospital, when I go for (only) outpatient appointments, see how some are in worse shape than I’m in, hear the helicopters land at the hospital, and see the ambulances come to the ER, knowing how scary that can be! I observe other people at Physical Therapy with their head in a cage, or without a limb, I walk past the mental health ward that was my home (twice), am humbled when I read many posts of what others go through here in MHC and remind myself it COULD ALWAYS BE WORSE. With this new perspective, comes gratitude and appreciation…and I choose to smile.

Now to be honest this is a work in progress, I still can wake in the morning and feel sorry for myself after I get out of bed with four body parts hurting before my first step. I can get depressed due to having so many med changes recently. I have even called Mom in total fear before I went for a biopsy, while waiting for news from an ultrasound of something else, and having just found out a procedure I had recently might need to be repeated… and all of a sudden I realized how overwhelmed and scared I was, broke down and cried. Mom “caught me” as she has so often and uplifted & encouraged me. Then a funny thing happened later...I broke out laughing at the magnitude of it all, then walked out of the doctors with my cane and funky glasses and remembered it HAD been worse…but I’m still here!


How do you feel when you see your pill bottles? Take your meds every day? Go to regular doctors appointments? I invite you to shift your perspective too… if you haven't already…because even if nothing changes with your health challenges, how you feel about them can make all the difference!

#MentalHealth #Depression #Anxiety #Disability #ChronicPain #ChronicIllness #Selflove #Selfcare #BipolarDisorder #BipolarDepression #ADHD #ObsessiveCompulsiveDisorder #COVID19 #Migraine #Headache #HIVAIDS #PeripheralNeuropathy #BackPain #Addiction #AddictionRecovery #IfYouFeelHopeless #Hope #CheckInWithMe #InsideTheMighty #MightyTogether #DistractMe #MightyMinute #MightyQuestions #conqueryourmind #RareDisease #BrainInjury

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Ending a Relationship

My partner and I had been in a relationship for almost 9 years. He left me abruptly for reasons that have always been present. I have multiple chronic and MH challenges.

I understand the burden of being in a relationship with someone who is unwell, and the roller coaster ride of ups and downs that come with it.

This former partner doesn’t have a good reason for ending the relationship, though I’m aware that it is because of my illnesses. They still love and care for me and have set a boundary, eliciting that they would rather move on without me and with someone else, almost absolving themselves from my burdens.

I’m at a loss in finding hope for the future as a #Spoonie who feels as though they weren’t and didn’t do enough.

#Relationships #Headache #Migraine #MentalHealth #Bipolar2 #MajorDepressiveDisorder #Fibromyalgia

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I’m NOT new. I actually founded this group😉 I have been dealing w/ layers & layers of health challenges. Thoughts, prayers & good vibes appreciated!

It is so exciting to see all the new members joining the group and so many of you introducing yourself and sharing about your journeys. I wish I could be more active & better support you all right now, however I have had to really step back & focus on self care. Big props and thanks to our new co-leader Wendy Love for jumping in to acknowledge and support you all with empathy, care and sharing her great positive energy!

Dealing with layers of health challenges right now can be overwhelming for me sometimes. Some are relatively serious, some have me scared while waiting w/ lots of “not knowing!” I have had very regular health appointments (4-6/wk avg) since November, 1 minor surgery, am getting a biopsy this week, have had 2 ultrasounds, and MRI’s of my neck, shoulder & back which were injured from a bad fall when I also had my second concussion in less than a year . So I’ve been in PT 2x/week since last year then two months ago I was diagnosed w/ a rotator cuff injury🙁

I had debilitating migraines back in 2020 from Long Covid that were finally getting better from working w/ my Neurologist… trying monthly shots, infusions & Botox, finding the right meds - one daily & two as needed at onset, using a special tens unit, and an ice cap, taking OTC painkillers, nutritional supplements, etc. Then after the 1st concussion I went right back to 14-16 migraine days a month🙁

Due to my lack of appetite & insomnia from the concussions, plus the migraines, my doctors made major med changes for 8 months. The challenge was that most were psych meds, leaving me just hanging on emotionally through severe ups & downs as I stopped 2 meds, added 1 & changed the dosages of 3 others! After all of this I have just recently had the migraines decrease in frequency and intensity👍

From the concussions I have also dealt w/ brain fog, and memory & concentration issues that made writing so frustrating, which have also been better recently.

I think it really helps me that from a young age I watched my Dad model how to deal with life threatening health challenges w/ determination, dignity, unwavering positive energy, humor, and being a warrior & survivor who never gave up hope! Then I learned how to survive through decades of health challenges myself… inspired by my Dad’s example. I was diagnosed w/ Bipolar Disorder (1982); I have struggled parts of my life with addiction (almost 12 years sober); along those paths I contracted HIV almost 40 years ago then I was very blessed to survive the 80’s when AIDS was considered a death sentence. With my weakened immune system I dealt w/ many serious complications like Pneumonia, Shingles, Bronchitis, C-difficile, and Neuropathy that had me bedridden for 9 months & told I may never walk again…which I still deal w/ today on a lesser level and in 2020 I got hit with Covid real bad, so I've survived two pandemics.

Earlier this year my perspective about everything I’m dealing with currently really shifted. I came to the realization that all my health appointments were helping me heal, cope, and I believe that they will help me to return to being active and thriving again. The blessing of being on disability is that it enables me to focus on my health and self care. I have accepted that taking care of my health is a full time job! It can be very Physically & Emotionally draining, yet I remind myself regularly of all the blessings I DO have. I take solace in the fact that it could always be worse. I am very thankful to have a roof over my head, food on the table, and to have a strong support network of friends, family & health providers.

I have learned to accept my limitations, and adapt as I live & evolve in other ways like focusing on writing my memoir & other reflections, starting this MHC group and posting regularly. In the first 18 months I made over 80 posts from June 2021 through 2022! I will repost select ones starting soon.

Sending blessings, virtual hugs and positive vibes your way! Please send some back…


#MentalHealth #Depression #Anxiety #Disability #ChronicPain #ChronicIllness #Selfcare Selflove #BipolarDisorder #BipolarDepression #ADHD #ObsessiveCompulsiveDisorder #COVID19 #Migraine #Headache #HIVAIDS #PeripheralNeuropathy #BackPain #Addiction #AddictionRecovery #RareDisease #IfYouFeelHopeless #Hope #CheckInWithMe #InsideTheMighty #MightyTogether #DistractMe

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Closer to an answer

I have been having headaches/migraines everyday and finally I had my neurology appointment with one of the headache specialists. She gave me some insight into a path to figure out what's wrong. I have to start a steroid, magnesium, and B2. I have to do an MRI and revisit the ENT. I hope this helps us figure out the cause of these restless headaches.

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