Introduction
Hi, I’m new to #MightyTogether
The mighty has published a handful of my articles. I live with a handful of chronic conditions that are really painful and debilitating. I’m looking for others who get it.
Thanks for having me here. # EDS #BrainInjury #Gastroparesis
Life with Tardive Dyskinesia
hello! good to be here. thank you Thomas! Looks like a great group. I'm happy to be here. Here is the article you suggested I share.
the below is the text to the article. there is a video on the site it comes from that is very much worth watching (9 minutes long) beyondmeds.com/2022/09/14/life-with-tardive-dyskinesia
I’ve posted a couple of times about having TD. It is an awful debilitating, crippling and disfiguring disease caused by iatrogenic injury. I just discovered the National Organization for Tardive Dyskinesia so I thought I would share. There is very little accurate or clear information about this disease. I have avoided doctors mostly as I’ve not encountered anyone that seems like they would do anything other than harm. Neurologists who treat TD are prone to use psych meds and the MDs I saw mostly shamed and dismissed me as crazy. I did have a psychiatrist who was also a friend diagnose me and it’s very clear that I have TD. I go from being physically okay to being able to hardly stand up in the same day. I suffer from acute and chronic pain in my face, head, neck and shoulders. I am often totally unable to function as a result of this drug injury. I’ve written very little about it because this site was about recovering after coming off psych meds and well, I’ve got my mental health but I am not well. It’s likely I will never be well. My only goal now is to learn how to cope better. As readers of this site know I’ve exhausted all manner of behavioral and lifestyle healing methods. This is not an easy ride.
(video is placed here: beyondmeds.com/2022/09/14/life-with-tardive-dyskinesia/)
My work on TD is below. I’ve experienced it very much in my own way and written very little. Perhaps I’ll write more moving forward. My experience suggests systemic infection as it’s clearly involved with the various systemic infections I was diagnosed with as Lyme Disease. (Lyme is amorphous systemic infections that vary greatly from person to person depending on the combination of pathogens…if the organisms associated with Lyme disease is presnt you can say you have lyme disease…it seems to me many people have systemic infections complicated by heinous biofilms that don’t always get diagnosed as lyme…so I don’t really like that diagnosis as I think it’s lacking in clarity.)
TD also varies greatly in severity. It seems the brain injury from long term use and withdrawal made mine severe in some pretty particular ways. I look forward to getting to know others with TD and am scheduled with a group support meeting at the organization that made the video.
My pieces that include my early musing on TD: for links go here: beyondmeds.com/2022/09/14/life-with-tardive-dyskinesia
Hanging On the Edge: One Man's Perspective on Rock Climbing & the Therapeutic Relationship
Rock climbing saved my life. When I am on the side of that mountain, I feel more grounded, more alive, and more connected to the Universe. For me, it’s a holy place. This is my church. In my 32 short years on this planet, I have found climbing to be a beautiful metaphor for overcoming the difficulties life throws our way, sometimes.
In the rock climbing community as in everyday life, we refer to the obstacles we’re working through as “problems”. Although I am tired, hurting, and feel I can’t go on...I don’t give up. I continue pushing through the pain, doubt, and exhaustion until I finally reach the summit. At which point, I can reflect back on all the problems I overcame, the path I took, and what technique I used to get through it. Then, I can feel an overwhelming sense of pride and accomplishment for all my hard work. The next time I encounter a similar problem, I'll know what to do to get past it.
No one pushed or pulled me up the mountain. All that hard work was mine. The person on the ground belaying me is merely there to provide me with safety, support, and ensure I do not fall, should I stumble. Everything else is up to me. The more I work through my problems, with my friend supporting me on the ground, the stronger I become.
You see, therapy is a lot like rock climbing. In this allegory or metaphor, you (the climber) are the patient, the mountain is your crisis, the "problems" are all the obstacles that stand between you and overcoming the crisis such as the loss of a job or the death of a loved one or an illness, the summit is mental wellness, and the person belaying you is the therapist.
While your therapist doesn't tell you how to feel, what to think, or what conclusions to come to, they are there as a constant support to figuratively catch you should you have any setbacks during your journey. They keep you safe and secure by "holding the rope" so that you do not plummet, and so you can resume where you left off whenever you are ready.
You can absolutely achieve wellness on your own, or "free climb", but the trek will be significantly more difficult, and there will be no one "on the ground" to spot an easier path or remind you of different techniques you can implement to overcome those problem areas. So even though you are the one doing all the work, your therapist is an integral part of your team, who spots the problem areas ahead of time and assists in identifying the various tools you can use to get past them. In essence, they help you work through the problems in this way, without actually pulling or pushing you up the side of the "mountain". This is how you gain the strength and coping tools needed to persevere toward this summit and all future summits. Thus, rock climbing has taught me that when you replace "I" with "we", mental illness truly does become mental wellness❤
#MentalHealth #CollegeMentalHealth #wellness #CollegeSports #Sports #Therapist #Psychiatrist #ChronicIllnessStigma #EndTheStigma #MentalHealthStigma #BipolarDisorder #Agoraphobia #BrainInjury #Medication #Inspiration #Depression #Addiction #MentalHealthHero
The InBox I never remember is there.
I am not on here 24/7 and If you send me a message and a week goes by it’s because I’m busy trying to live and I’m on many other platforms. I am not ignoring you but if you block me because your pants are in a knot because of it I’m sorry but not all of us on here can be 24/7 . I have a brain injury and never remember to look in the message box even if I have notifications on. I probably will forget . So please don’t be rude because 24 hours went by and I didn’t see your message on here. If you block me I will block you. I have over 100k emails to get too. I do the best I can but I don’t sit here waiting for a message. This has happened now at least 5 times. #rude #Impatient #weareinthistogether .
Some advice
Hi,
I have been unsure as if to post this but I will try to see if anyone answers out of kindness.
I believe I have some sort of autism or social-learning disabilities which Ive had most my life.
Lately I’ve been making “social-mental” mistakes? In a social setting under pressure, where my minset is supposed to be “tough”, I have like “let up” and my mind has become “soft or weak”, thats the best way I can describe it.
Its happened so many times lately , where I know I havent met social expectations of me and I know people have noticed based on how theyre treating me.
I feel like Ive let people down and lost a lot of credibility, and perhaps social worth. Im worried about it, and what it means for my future.
Its hard to talk about but out of kindness can anyone relate or offer any suggestions? Thanks very much 🙏🙏🙏
#Autism #traumatic Brain Injury #Depression
Be careful not to wear blinders when approaching a problem.
The Pandemic caused me to be a hoarder and a slob
#Anxiety #Depression #LymeWarrior #TraumaticBrainInjury #traumatic grief
My house looks like a slob lives here. I have paperwork all over in every room. Just looking at it hurts my brain. I try and clean it up or organize it but I end up just moving papers in a different spot.
I get into bed at night with trash on my bed. I have to move it all just to make room for myself. I lay there praying to God and asking why? Why did all those people have to die. I cry myself to sleep praying to see my loved ones that were taken since the pandemic started.
I had just gotten my life back after a 14 year battle with co-infections from Lyme disease. I finally was leaving my house, seeing my friends, shopping. I had 9 months of somewhat of a life back then I was forced back into my house. Then in 2020 I got bit again and im back fighting for my life again. New symptoms to deal with. I grieve the life I had before.
What I lost besides loved ones was myself. I don’t know who I am anymore. My first grandson was born during the lock down. I was able to see him 6 feet away 3 days after he was born. It was like I was looking at someone else’s grandchild not mine. I was not aloud to hold him because I can’t get a flu shot. The last one almost killed me.
I found out later everyone was holding him except me. This was so hurtful and my son allowed it to happen. It started to become to painful for me to even go to see him. What was the point if I had to watch from 6 feet away. I still do not feel any connection to my grandson and that is my son’s fault. He is 2 years old now. We aren’t aloud to babysit him or take him anywhere by ourselves but her parents are. I pray to God I’m still alive when and if another grandchild comes.
Funny thing I was aloud to hold my friend’s grandchild with no problem. When I was able to hold my grandson I was in a hazemat suit he was 8 weeks old. No one else had to wear one except me. Now that’s personal. I had 5 friends become grandmothers and they posted it on Facebook no one was wearing a mask or a haze mat suit. I’m not even aloud to show pictures of him to my friends because he’s not old enough to consent to it.
I had to go into therapy because of this behavior which was personal and not due to the virus. At least that is what I was told by my therapist. My heart is still broken and it’s still beating but for what. ?
This is not the way it was supposed to be. This is not the life I wanted or imagined. I am just existing.
I know hoarding crafts that I will never make, jewelry I will never make it has to stop. A lot of stuff I bought most is now expired. Did I throw them away? Nope.
I could keep writing about all I have lost but everyone has lost. So there is no point I guess. I did lose my Mom to the virus watched her die over zoom for 9 weeks. Then I found my best friend, my brother dead in his apartment. I think he was murdered but I can’t prove it. Now I deal with a fractured sternum and PTSD from that.
Hoarding is caused by lost, trauma, stressful life events, a brain dysfunction. I’m not putting anymore labels on myself. I just wish I could stop it. I wish I could afford someone to help me get organized as I no longer can do that. I can’t afford much of anything. I sell things to make money but it’s not enough. I’m too sick for a real 9-5 job. I do have a on line wholesale shopping club with weight loss products but that’s still not enough. I’m worrying myself to death literally.. I need extensive dental work due to lyme. I was scammed out of my savings for that. More loss. It effects me emotionally, physically, mentally.
I’m just rambling now it’s late here and my brain is tired. Im actually getting tired of living because it’s just so damn hard. I’ll write some more later. Thanks for reading this post. Since 2019 I lost 27 friends and family. Isn’t that enough???
#LymeWarrior #PTSD #LivingWithPOTS #PudendalNeuralgia #ChildhoodAbuse
#BrainInjury
#MemoryLoss
An Open Letter From A Mama Whose Child Became Medically Complex After Adolescence
Yesterday two of my three children went back to school for the 2022-2023 school year. We did all the things to prepare for the first day: schools supplies, meet the teacher, picked clothes out, talked about what they looked forward to and what they were fearful of.
I walked them to school (we live a few houses away), hugged each of them and waved goodbye reassuring them they were going to have a great day. Then I turned around and headed home.
On my walk I was flooded with the feelings my heart had been storing. My other child will not be returning to school with his siblings because just 11 months ago he suffered a severe hemorrhagic stroke caused by a ruptured aneurysm at the site of an unknown arteriovenous malformation within the left portion of his brain. That was a lot of words right?!?! Yep, that’s what I thought too when it all happened.
The aneurysm that led to a catastrophic bleed resulted in a brain injury we could have never foreseen. See that’s what happens with rare diseases; there is not enough research or education for people to be aware they even exist. Even when the result is lifelong recovery to a degree that is different for each case.
Some parents are informed pre-birth about genetic anomalies or diseases because of genetic testing or ultrasound results. Some find out after the birth of their child takes place or within the first few months because of difficulties or symptoms. We were completely unaware there was a ticking time bomb tucked deeply away in our son’s brain just waiting to explode.
Having your child acquire their disability and become medically complex after their adolescent years is… well, not something words can describe or that I would wish upon anyone. The grief is heavy and the learning curve steep.
I have joined groups of other parents with similar diagnosis’s only to be utterly discouraged by seeing so many others’ miraculous recoveries or much shorter timelines.
I have also built community with other moms who know all too well what it is like to have a medically complex child. I feel more support in these relationships, but still a hole and lack of relation when it comes to the stage of life we are in and grieving what we have lost.
I cannot care for my now 10 year old the way I could if he was 4 or 6. He is just too big. I need to use a lift for transporting and a slide sheet to move him in bed. I cannot pick him up and move him from place to place nor can I easily change him.
The advocacy and focus is also different. They advocate to embrace who their child is and the fact that they are no less and their needs are human, not “special.” WHICH IS ALL COMPLETELY, 10000 PERCENT ACCURATE AND ON POINT!!
I’m just not there. I’m not in that place or space. My child, at this time, is no longer capable of expressing who they were or doing the things they once did. My advocacy is more towards awareness about grief, sharing space and about his condition.
Only a parent who has experienced their child acquiring a brain injury, through disease or trauma, later in life knows the mourning and pain that accompanies every old photograph, every childhood video, every backwards milestone, every part of moving forward your other children experience without their sibling, every word not spoken, every smile not taken, every dream not lived every story not shared.
My goal here is not to discredit other parents’ grief or pain they experience with their children’s disabilities. Or their voice and message. Mine is different, not better or worse.
I grieve what was, what would have been and what could have been. Others grieve what would have been and what could have been. Both are still grief that needs to be explored and dealt with. Both have experiences that are valid and real.
The intent of my writing is to shed light so that when comfort or advice is shared, it is done so with knowledge and wisdom. When you approach a mama to a medically complex, rare disease, disabled child and share words, please be cautious to not put her in a stage of life she is either not prepared for or will never reach. If you do so, those words become a poison that attacks her heart and mind instead of a balm that soothes her soul. #BrainInjury #TBI #avm #PediatricStroke #RareDisease #disabilityparent #MedicallyComplexChild #MedicallyFragile #medicalmama #medicalmom #Caregiver
“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.
I'm new here!
Hi, my name is Shawnee3132. I'm here because I have recovered and still recovering from diffuse axonal brain injury (traumatic brain injury)
Latest
