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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!

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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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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…

Moshe
@moshe222mhc

#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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A little levity and a fun distraction from thinking about our health challenges & harrowing news stories. Some trivia, humor and a Get To Know Me part

I am sorry that I haven’t been very active here at all for a while. I have been dealing with layers of health challenges … much more than even I am used to … with surgery recently, a trip to Urgent Care, a few acute doctors appointments with different types of excruciating pain, serious side effects from two concussions I’ve had in less than a year… like damaging parts of my spine, then rotator cuff injury from overdoing PT, GI problems, and I’ve been holding on tight to keep my mental health balance as my doctor has made major med changes to many of my psych meds trying to help my migraines, lack of appetite and insomnia which have led to periods of deep depression & a short hypomanic period, and nightmares🥲. I have had 4-6+ health appointments a week. It has been very physically and emotionally draining and I have had to step away from the group to focus on self care. I want to give a special thanks to our new co-leader Wendy for doing such a great job keeping things rolling here and supporting you all the way I’d like to have been doing. Things are a little better for me now, so I thought I would offer a little fun for everyone before I resume my usual posts about health challenges…enjoy!

Can you answer all the questions below?

“What is this?” 🎂
“What sport uses this?” 🏀
“What do you do in this?” 🛁
“Where is this🗽?”
“What is this?”🦶
“Where is this in the body?”🦷
“What kind of animal is this?”🏇

OK, that was easy…How many of these can you answer?

“What is the athlete on that animal above called?”
“Do they use hands 🙌 to measure horses?
“What religion is this symbol for?”☦️ “
“What is this?”🫚
“What do you drink from this?”🍶
“What is this?🏏
“What sport is this?”🤽‍♀️
“Where is this?”🗿

For those my age and older:
“What is this used for?”📽️
“What gaming system is this from? 🕹️.
What is the hardest game to play on it?
(This obviously depends who you
ask, but I’ll take any mentioned by the
most gamers)
“What is this and who makes it?”🎙️
“What was the first album released on these?”📀
When was it released?
*This is kind of a trick question!*
“What is a 12” version of this called?”💿
Hint: It came out 4 years before CDs!
What company made the first player
for these?

How many can you answer?
***WITHOUT Googling them!***

Bonus questions: Get To Know Me”

“What song is my very favorite to listen to on these at the gym?”🎧
“What was the name of the hardest climb I ever did?🧗🏻‍♂️
What was it’s rating?
Did I get to the top?”
Hint: It’s in Virginia and the name has an animal in it!
“Have I ever worn a wig, 💄, fake eyelashes, 👗 , and 👠 ?
“Have I ever had black nail polish and worn black mascara?
“Have I ever done this?”🪂?🥋?🏄‍♀️?🚣🏼?🥊?🤿?🎭?🤹?🎯? ⛸️?🛹?🏒?🏉?
Which ones?
Hint: I’ve actually done nine!
Have I ever used a 🪓?🪚? 🪠?🔭?🚬?💉?🔬?🪆?🔑?🛏️?🛒?🚽?🧴?🩹?🪥?
Which ones?
Hint: I’ve used over 10!

****HOW MANY HAVE YOU DONE?
HOW MANY HAVE YOU USED?
WHICH ONES????***

“What would I be sending you on this?”🖨️
Hint: it would really help you with this

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Hope this gave you a laugh, challenged you, or at least distracted you from the coverage of the war in Israel/Gaza, politics and natural disasters!

Putting it together sure helped me!

#MentalHealth , #Depression , #Anxiety #ChronicPain , #ChronicIllness , #Disability , #Selfcare , #Selflove , #PTSD , #BipolarDisorder , #COVID19 , #Migraine , #BackPain , #shoulderpain . #PhysicalTherapy , #BrainInjury , #Concussion , #PeripheralNeuropathy , #HIVAIDS , #Addiction , #MightyTogether , #DistractMe , #CheckInWithMe , #IfYouFeelHopeless , #Hope , #InsideTheMighty

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We have reached 2,222 members🎉!! Thanks for being a part of this journey! (There is a special appeal to ALL members below.) Please read! 🙏🫶🤗Moshe

We are growing fast …just passed 2,200 members a few months ago and are at 2,222 today and growing strong! (If you are not a member yet please consider joining us!) This is really exciting to me, we have all put in the effort and as a community we have grown, flourished and have built a sacred place where I hope you all feel at home! You have shown you care for each other, are there for each other and trust each other. This makes me very happy and proud. I envisioned the group would be a place where members would empathize with each other, ask for support, and offer support to others. When we are operating smoothly this experience is so exciting to watch spread & expand.

However, to be honest, I have been very frustrated that there is less activity recently and as our membership grows steadily the number of comments & replies has actually diminished. Our old co-leader Chris is no longer with the group and we need to have others step up and make up for her commitment to regularly respond to posts and comments. This means a collective effort from everyone in the group! I have had numerous layers of serious physical & mental health challenges recently and have had to step back and focus on self-care. This is a time when you can all help me by checking in here and see if there are new posts and hopefully respond.

My last post about hobbies with the image of all the colorful people doing different fun things only got ONE response. And Laura made a great post about disability after that and it got only two responses. When new members have the courage to open up and introduce themselves we want them to feel welcome and supported. Please especially respond if you share some similar health challenges and hopefully offer acknowledgement and encouragement!

This is OUR group everybody and it functions best when members support other members. We all have our varied health histories and with them the knowledge and wisdom we’ve garnered along the way! PLEASE let’s share these with each other. This communal empathy and understanding makes us strong.

Offering your own posts provides more content for the group and can generate great conversations. Write about if you are struggling and need support, encouragement and/or information. Write about how great things are going and share things that are helping you. Pose a question to the group which can excite others to chip in. Or just share a great meme you have found. It can be really powerful for others to see your post as they can then empathize and relate! I would be happy to support your effort if you want to run things by me before you post, I can help finding memes or images if you like, and I will comment on your posts to get the responses going to best support your efforts. I’m here for you and really enjoy the whole process, so please reach out to me if you need assistance or encouragement. I have made well over 100 posts since I started the group and learned a lot along the way! (Please scroll down back in time to find my other posts, you might find some of them helpful😉)

I believe in the power we have as a group and the community we have built. I am so thankful you have joined us and we are all on this journey together!

In service,

Moshe Adler
@moshe222mhc
🙏💥🫶💜🤗💥🙏

P.S. ✡️Happy Rosh Hashanah✡️ -The Jewish New Year. May today mark a time of new beginnings for us all.🌦️⛅️🌤️☀️

#MentalHealth #Depression #Anxiety #Disability #ChronicPain #ChronicIllness #Selflove #Selfcare #BipolarDisorder #Bipolar1 #Bipolar2 #BipolarDepression #ADHD #PTSD #ObsessiveCompulsiveDisorder #COVID19 #Migraine #Headache #RareDisease #HIVAIDS #PeripheralNeuropathy #BackPain #neckpain #Addiction #AddictionRecovery #IfYouFeelHopeless #Hope #CheckInWithMe #InsideTheMighty #MightyTogether #DistractMe #TheMighty #MightyMinute #MightyQuestions #Concussion #BrainInjury

@laurascardigno @texassonrisa @xokat @sparklywartanks

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We are in need of a new co-leader for MHC to encourage, empower, & support our members. I make a APPEAL to current members - PLEASE read below!

We are currently looking for a new Co-Leader for the Multiple Health Challenges group. We are growning fast and just passed 2,200 members. This is really exciting to me, however to be honest, I have been very frustrated that there is less activity recently and as our membership grows steadily the number of comments & replies has actually diminished. Our old co-leader Chris is no longer with the group and we need to have others step up and make up for her commitment to regularly respond to posts and comments. This means a collective effort from everyone in the group! I have had numerous layers of serious physical & mental health challenges recently and not been as active as I would like in order to step back and focus on self-care. This is a time having another co-leader to pick up the slack is essential!

My last post about hobbies was actually first posted 16 months ago (when we had at least 1,000 less members) and it got over 200 ❤️ & 👍and 100 comments then! It got only ONE this time. And Laura made a great post about disability after that and it got only two responses as well. When new members open up and post to introduce themselves and then get very little response that is even worse. I fear that new members will see this and not be active moving forward. This is OUR group everybody and it functions best when members support other members. We all have our varied health histories and with them the knowledge and wisdom we’ve garnered along the way! PLEASE let’s share these with each other. Without this empathy and understanding this group is falling short of what I first envisioned when I started the group and what it’s capable of.

For a co-leader I am looking for someone to welcome new members, comment or respond to posts and other comments & replies, and make new posts to the group. It is important for the group to have distinctly different voices to support people because people might relate more to either of us. What is a really good situation is if we both respond to the same posts, welcome new members from different perspectives and provide voices for people that are accessible and relatable. There is a commitment needed that you monitor activities on the group regularly and can respond pretty quickly.

Offering your own posts provides more content for the group. I can assist and support by offering to look at your new posts for feedback and editing before you post if you would like, will comment on your posts to get the responses going to best support your efforts, and I can help finding memes or images.

I look at potential leaders' history of posts and/or comments that have helped and supported others in the past. Willingness to be honest and open about your own health challenges is crucial to best support people.

You will get access to the Community Leaders group and your name will have a “Group Leader” tab next to it up top on your comments and responses so I think people pay attention especially to your activity and wisdom shared from your personal experience. Would you consider joining me on this journey? Let’s have a DM chat to discuss this! Thanks for considering taking on this role!

In service,
Moshe
@moshemhc

#Depression #Anxiety #MentalHealth #ChronicPain #ChronicIllness #Chronicpainwarrior #Disability #BipolarDisorder #BipolarDepression #BipolarIIDisorder #Bipolar1Disorder
#ObsessiveCompulsiveDisorder #ADHD #Schizophrenia #AspergersSyndrome #Autism #Dementia #Concussion #Addiction #AddictionRecovery #Cancers #TraumaticBrainInjury #BrainInjury #LossOfAParent #Grief #Suicide #ChronicFatigueSyndrome #DistractMe #HIVAIDS #MightyQuestions #DownSyndrome #IfYouFeelHopeless #Hope #Deafness #neckpain #BackPain #CongestiveHeartFailure #Migraine #COVID19 #PeripheralNeuropathy #LymeDisease #Diabetes #EatingDisorder #Headache #Stroke #Cancer #BorderlinePersonalityDisorder #Fibromyalgia #Disability #thankful #grateful #CocaineDependence #drugaddiction #Alcoholism #PTSD #EmotionalHealth #physicalhealth #PainAcceptance #Acceptance #relief #Selflove #Selfcare #MentalHealthHero #TheMighty #RareDisease #MightyTogether #RareDisease

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What are hobbies and healthy activities that have helped your mental health?

Typically when people think of self-care, they think of: getting enough sleep, exercising, eating well, taking a nap, meditating, taking a bath or shower, or even going to a spa. But what if a rock concert is more your speed? Or Rockclimbing? Bowling? Backpacking? Fishing? Gardening? Deep cleaning? We are each our own person. What works for you may not work for others, or vice versa. There is no “right” answer as to what hobbies can and do improve our mental health. By sharing what helps you, hopefully other members will be inspired to explore those or other new activities!

I like listening to or making music on my drum. Recently I’ve found listening to podcasts can be very enthralling…entertaining and even educating! At the beginning of Covid Stay at Home I got some Legos and making things with them was fun and a great distraction…so it was a new creative hobby …and using colored pencils filling in mandalas and tattoo flash in adult coloring books (yes, they have these! They can be quite intricate and challenging …or simple) These were surprisingly therapuetc and calming! I love taking the time to create something, finish it, step back, and see the end result of my efforts. It can make me feel really good…proud, accomplished and empowered!

What have you found works for you?

Here’s a quick check-in for if you’re feeling self-conscious about your preferences…

Q: Does [insert hobby here] help you when you’re down?
A: Yes!

Conclusion: Then you’re doing it right, my friends! I am so glad you have found things that help you. Keep exploring to find new hobbies to expand your possibilities and new ways that you can turn to when you’re down or need a boost!

Please share those hobbies activities below — let’s see who has similar ones, or maybe ideas people haven’t thought about but will help them too!

#MentalHealth #Depression #Anxiety #Disability #ChronicPain #ChronicIllness #Selflove #Selfcare #BipolarDisorder #Bipolar1 #Bipolar2 #BipolarDepression #ADHD #ObsessiveCompulsiveDisorder #COVID19 #Migraine #Headache #RareDisease #HIVAIDS #PeripheralNeuropathy #BackPain #neckpain #Addiction #AddictionRecovery #IfYouFeelHopeless #Hope #CheckInWithMe #InsideTheMighty #MightyTogether #DistractMe #mighty #MightyMinute #MightyQuestions #BrainInjury #Concussion #BrainFog #MemoryLoss

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When do you feel brave? When do you feel strong? When do you feel smart? … When do you wish you felt braver? feel stronger? feel smarter?

Being courageous and taking acts of faith requires self love. From self love we can do more self care. Then we can look for the moments when we have felt braver, stronger or smarter….and can start letting ourselves dig deep and find our inner strength that we all have. Without it we may not still be here today. Even when I’ve been physically weak and felt like I couldn’t do any more, contribute more, or just show up…l’ve learned to dig into the power I was born with. Over the years I’ve found myself losing my ability to do things I used to do (a lot) I have found that I have the power to dig deep and push through and have realized that I’m a warrior and I wouldn’t have survived all these years if I hadn’t tapped into my emotional strength and fought for my life, fought to overcome fear, worry, sadness, depression, lack of confidence and fought to try to ignore others judgements and negative thoughts. (Many of which are just my projections.)

I have the blessings of a support network of family, friends and amazing health care providers which has truly helped me survive. Over time I learned to accept their support, often only when I got the courage to ask for help. But my best support is what I have found deep inside me that I never knew (or believed) I had. I have learned to trust myself and just take one new day at a time, one challenge at a time, and fight through one type of pain at a time. Its a work in progress. Some days can be much harder than others, but I will keep moving forward on my journey of building self love..

YOU ARE ALL WARRIORS TOO! You have taken the risk to join The Mighty, and to join groups to find connections…to learn from others and then in the process have made the intention to better yourself as a person and found here that you are not alone. You may take medications, although often begrudgingly; you may go to doctors appointments, even if it takes all you have to get there; you may go to therapy, at first not knowing what to say… all in hopes of overcoming challenges, feeling better, and getting stronger. You have survived so much because you all have inner strength, courage and smarts you were not only born with, but you have built on and strengthened these powers from what you’ve learned along your paths of survival! So be courageous, be strong, be smart, and you will continue to survive and thrive and take leaps of faith!

#MentalHealth #Depression #Anxiety #Disability #ChronicPain #ChronicIllness #Selflove #Selfcare #BipolarDisorder #Bipolar1 #Bipolar2 #BipolarDepression
#ADHD #ObsessiveCompulsiveDisorder #COVID19 #Migraine #Headache #HIVAIDS #PeripheralNeuropathy #BackPain #neckpain #Addiction #AddictionRecovery #IfYouFeelHopeless #Hope #CheckInWithMe #MightyTogether #DistractMe

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It’s ok to not be ok! Health challenges can leave us physically & emotionally drained. Mine became too much & I had to step back to focus on self care

Like it says in this meme, I can feel upset, confused, frustrated, depressed, angry, despondent and especially lonely. … as I have spent too much time isolated and stuck at home due to my physical limitations. Recently I’ve had to step back from this group to focus on the layers of self care my body needs and the very regular doctor and health appointments I go to have really drained my energy. Meanwhile I have lost a close relative, a close friend and the branch of the men's group I’ve met with weekly for 6 years sadly officially disbanded & had our last meeting last week. At first these all became holes, empty spaces in my life. all people and a group where I felt very safe, felt loved and they were people who knew my past struggles and meandering path..and were always there for me.

It was really tough to lose all that support at the same time. I felt even more alone at a time when I have been in severely distracting pain and I’ve been physically and emotionally drained every day. I had nothing to give anyone else when I would usually have been supportive and always tried to be here for you.

Today my health is just a little better, and I’ll take small victories … My Physical Therapist just cleared me to go back for daily walks and/or go back to the gym. (I've been seeing him for my spine (neck/shoulder & back - injured in my second concussion) and ankle & foot (injured in an earlier fall) … and today the Neurologist specialist told me very confidently that I definitely don’t have Parkinson’s Disease, which we had feared. For almost a year I presented the same symptoms, and he stopped, changed dosages & changed meds very aggressively, did scans & tests and monitored me regularly. Yet he was very happy to see that my Essential Tremors are almost completely gone and my balance is better. I had other symptoms like brain fog, memory problems, very regular migraines, and worsened Neuropathy due to Covid Long Haul and then the brain injuries. With the more recent concussion all these things have intensified and the way I fell put pressure on my spine -neck down to lower back which have been the most troubling areas and triggers for the chronic pain.

I just keep doing the next right thing, treating what hurts the most first, then the next, and the next …and accepting my limitations; adapting my lifestyle; and I keep hoping that some symptoms will be over sooner than later. Over time I have settled into a routine of self care; and let myself to just BE, and not have to DO things all the time!

I’ve been worn out and missed many posts or comments here and haven’t supported you guys as much as I had been for over 3 years now. When I started this group I pledged to myself that I would respond to all posts, comments or replies. It has been an honor for me to help maintain this group and that you all trust me and each other. You all have helped me to create the safe “container” of this group where people feel comfortable enough to share, support each other and it has been rewarding to see the way people have connected with each other when they share things in common. We have grown into a strong, diverse and unique community!

#MentalHealth #Depression #Anxiety #Disability #ChronicPain #ChronicIllness #Selflove #Selfcare #BipolarDisorder #Bipolar1 #Bipolar2 #BipolarDepression
#ADHD #COVID19 #Migraine #Headache #HIVAIDS #PeripheralNeuropathy #BackPain #neckpain #Addiction #AddictionRecovery #IfYouFeelHopeless #Hope #CheckInWithMe #MightyTogether #DistractMe

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Why are we accepting poor infection control?

While I am thrilled that the pandemic phase of Covid 19 is over, the complete lack of infection control in medical settings is nothing for anyone vulnerable to Covid 19 to feel happy about.  I was born without a whole immune system.  What I have is a rare antibody deficiency disease.  I don’t make enough antibodies to fight infection normally.  It’s easier for me to get sick, I can become sicker from infections, and I do not always have a normal vaccine (or antibiotic) response.  Avoiding infections is a crucial part of my staying healthy.

I caught covid last July from a routine doctor’s visit.  I had 4 doses of vaccine, I wore a properly fitted mask and I did not remove it for even a second.   There were no other patients in the office.  The waiting room was empty but I sprayed my pocket-sized Lysol anyway.  I was immediately taken into an exam room by an unmasked assistant.  I sprayed the exam room a total of 3 times with Lysol as I waited for my doctor.  Any more than that would have been overpowering.   My doctor wore a mask and everything went well so my visit was brief.  When I left used hand sanitizer until I got home and washed my hands.   48 hours later my symptoms began.

My point in telling how I caught covid is not to debate vaccines, or masks but to be clear that I went above what most patients do to avoid infection during a doctor’s visit.  My mini bottle of Lysol is seen as a bit brazen by most standards.   I am unable to avoid infection all by myself.

I currently live with a handful of chronic conditions.  Each condition has its own specialist.  How am I supposed to get through all my appointments without getting sick?  Covid is still circulating all year round and the vaccines don’t do much to prevent infection.  I am up to date on my boosters and I still mask indoors, but I know it’s not enough.  And so I am delaying my appointments and routine tests and care as much or even more now than I was during the pandemic.  I have health insurance but I don’t have full access to my healthcare unless I want to be sick all the time,  risking the health I have fought so hard for my entire life.

I am sharing this today because of even worse stories I have been hearing lately.  One was by a distraught wife whose husband was in the ICU and had a lung transplant.  She and her family were wearing a mask to visit her husband but the hospital staff caring for him were not!   And this is why I am speaking up today.

It’s not just people with rare diseases like me who may be vulnerable to covid.  The elderly, organ transplant patients, cancer patients and others with existing conditions are all more likely to have problems from covid.  But let’s be honest here.  Covid is not healthy for anyone.  It’s inconvenient for everyone and so it is understandable that most people don’t want to take precautions.  However, an ICU is not a pizza parlor, mall or movie theater.    Hospitals exist to help people get well.  Anyone requiring ICU care is very sick and under no circumstances should anyone be careless with their health and safety.  Maskless medicine when working with with at-risk patients is wreckless & sloppy.   Why as patients, as human beings are we accepting sloppy medicine?

Even aside from covid what about all the other respiratory infections- RSV, Flu, and Strep throat?  So many infections can be passed to patients by healthcare workers before they have symptoms.  Better infection control protocols have been desperately needed.  Hospital-born infections have always claimed lives.  When as patients are we going to demand better care?

My condition is rare but it affects 250,000 Americans.  If you add HIV patients, cancer patients, our elderly, all our immune-compromised & Immune suppressed we are not a small group.  What we need is for our patient organizations that represent us to speak up.  We deserve patient-centered care that does all it can to avoid harming us while treating us.  All human beings can benefit from better infection control in medical settings.  The idea of preventing the spread of respiratory viruses in healthcare settings may seem radical, but if we look back to the early 1800’s expecting your doctor to wash his hands would have been controversial.  Medicine has come a long way since then, but Covid has taught me we still have so much further to go.

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Which one of these did you most need to be reminded of right now? Why? (...and Why I chose #3 about taking care of my body…)

For me there were a few…but one stands out. I’ve been going through a very difficult time right now physically and emotionally and the third one- just the simple reminder that my body is sacred and to cherish it was really important for me to hear right now …as a reminder and encouragement that at times like these it is especially important for me to focus on self care … and give myself permission to do so even if it means sacrificing other things I planned on doing. The fundamentals: drink enough water; eat well; make sure to get enough sleep so my body can rest & recharge; find a few moments to meditate or sit in silence and just focus on breathing; and just going on a short walk or exercising every day (and listen to my body so I don’t overdo it) They sound so simple and basic however they can actually be very hard for me to keep up with when I am down! I can’t change them all at once, but will pick a few to start with and build from there!

Did any of them inspire, encourage &/or empower you?

#MentalHealth #Depression #Anxiety #Disability #ChronicPain #ChronicIllness #Selflove
#Selfcare #BipolarDisorder #Bipolar1 #Bipolar2 #BipolarDepression
#ADHD #ObsessiveCompulsiveDisorder #COVID19 #Migraine #Headache #RareDisease #HIVAIDS #PeripheralNeuropathy #BackPain #PTSD #Addiction #AddictionRecovery #IfYouFeelHopeless #Hope #CheckInWithMe #TheMighty #MightyTogether #DistractMe #Trauma #MightyPoets #Grief

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