Congestive Heart Failure

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I'm new here!

Hi, my name is DiscoSeahorse8655. I'm here because
I have Osteogenesis Imperfecta type 1, Aortic Heart valve leak, Congestive Heart failure, A-fib, Type 2 Diabetes, Asthma, Reynauds Disease, Degenerative Disk Disease and, s3 a Rheumatologist tomorrow because my Podiatrist thinks I have Rheumatoid arthritis.#MightyTogether

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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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New here

Hello, thank you for letting me in this group :) I have lived with anxiety since I was a child. In the early 2000s I was dxd with bipolar disorder with traits of bpd. Then when I was 28 I was diagnosed with stage IIB breast cancer. (Cancer free for 18 years!). I was hospitalized for congestive heart failure in 2017, because of damage from the chemotherapy. Oh, and I have migraines which knock me down on a regular basis. I hate listing all those things. It's like I have the longest rap sheet!

All of these conditions affect my daily life and it is so hard to maintain a balance especially with the heart failure, but I still go on. I do my best to hide them. But I wish I didn't feel like I had to! I am here to both offer support and get support from people who know what it's like to live with so many chronic hardships.

I live with my husband, and baby, Minkee (below)

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What are you grateful for? What can you be thankful for to keep you holding on during tough times?

Please let's all share our blessings in life that we are thankful for. In
dark and trying times (like right now), I try to always remember the things I am grateful for and remind myself that without any/all of them my life could be much less manageable

I am grateful for:

-Being alive!
-Being able to walk, even if I need mobility devices
-Having a roof over my head
-Having food on the table
-Having great doctors, nurses, my therapist, my shrink, numerous specialists and my clinic - and having the insurance to pay for them - as well as insurance to pay for my many medications!
-Having a strong network of family and friends and always being able to know that I am loved and supported ...and
-Having my relative health - things could always be worse!

What are you thankful for?

Maybe thank someone who you are grateful for and let them know how helpful they are and how much it means to you to have their support. Sometimes people don’t know how much they impact other’s lives!

#Depression #Anxiety #MentalHealth #ChronicPain #ChronicIllness #Chronicpainwarrior #BipolarDisorder #Bipolar2Disorder #Bipolar1Disorder #Stigma #BipolarDepression
#ObsessiveCompulsiveDisorder #ADHD #Autism #Dementia #Addiction #AddictionRecovery #BrainInjury #LossOfAParent #Grief #SuicideSurvivors #MyalgicEncephalomyelitis #HIVAIDS #longtermsurvivor #ChronicIllness #ChronicPain #MightyQuestions #DownSyndrome #IfYouFeelHopeless #Hope #Deaf #CongestiveHeartFailure #Migraine #COVID19 #PeripheralNeuropathy #LymeDisease #Diabetes #EatingDisorders #Headache #Stroke #help #BorderlinePersonalityDisorder #Fibromyalgia #thankful #grateful #EatingDisorders #CocaineDependence #drugaddict #PTSD #EmotionalHealth #physicalhealth #PainAcceptance #Acceptance #relief #Happiness #TheMighty #MightyMinute #MightyTogether #DistractMe #MightyTogether #mentalhealthwarrior #RareDisease #ChronicFatigue

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Surviving is just part of the journey…making the most of the time it gives you and realizing there can be good times despite the struggles is a gift!

It’s not all about survival, there is a lot of living to do along the way. Although at times I feel like I am just treating one ailment after another, all day every day (which is true right now) I’ve decided why take all the time and energy it takes to survive everything unless I don’t enjoy how the time given to me by surviving is ripe for good times too.

Recently I have mostly been homebound except to go to health appointments… doctors, PT & OT, clinics, therapy etc. and then only with a walker and the benefit of handicapped parking spots. But I try to continue to celebrate the gifts I have in life, be thankful for the blessings I have that make life just a little more bearable and remind myself of what I’ve been through, how I’ve survived and what I’ve learned from these experiences. If I consider all this, then I must be a very wise man 😉 I may have dropped out of college but I have a Masters degree from the School of Hard Knocks … the diploma is not needed, I know I have accomplished it and need no reminder…I’m still alive after all!

Tough times have given me the chance to tap into my inner strength and I’ve also grown along the way. I don’t have to wait to celebrate the good times when I am experiencing some right now despite what I’m going through!

Thank you all for the love, support, thoughts and prayers, I certainly couldn’t have done this alone!

#Depression #Anxiety #MentalHealth #ChronicPain #ChronicIllness #Chronicpainwarrior #Disability #BipolarDisorder #BipolarDepression #Bipolar2Disorder #Bipolar1Disorder #Stigma #ObsessiveCompulsiveDisorder #RareDisease #AspergersSyndrome #ADHD #Autism #Dementia #Addiction #AddictionRecovery #Cancer #TraumaticBrainInjury #BrainInjury #LossOfAParent #Grief #SuicideSurvivors #ChronicFatigue #DistractMe #HIVAIDS #longtermsurvivor #ChronicIllness #ChronicPain #MightyQuestions #DownSyndrome #IfYouFeelHopeless #Hope #Deafness #neckpain #BackPain #CongestiveHeartFailure #Migraine #COVID19 #PeripheralNeuropathy #LymeDisease #Diabetes #EatingDisorders #Headache #Stroke #help #BorderlinePersonalityDisorder #Fibromyalgia #thankful #grateful #EatingDisorders #CocaineDependence #drugaddict #PTSD #EmotionalHealth #physicalhealth #PainAcceptance #Acceptance #relief #Happiness #Selflove #Selfcare #MightyMinute #MentalHealthHero
#TheMighty #InsideTheMighty #MightyTogether #DistractMe

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We are in need of a new co-leader for our group. Please see info below. We need someone to encourage, empower, support & be there for other members!

We are currently looking for a new Co-Leader for the Multiple Health Challenges group. We have grown quite a bit and just passed 1,500 members. In the past co-leaders have been golden, really helpful for me when I got sick or burnt out and had to step away for a few days. I am looking for someone to welcome new members, comment or respond to most posts or other comments, make new posts to the group every once and a while, and preferably someone who has physical and emotional health challenges so they can best relate to and understand where other members are coming from when they post or comment.

It is important for the group to have two distinctly different voices to support people because people might relate more to one 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…and when posts pose a question they keep things moving forward. I can assist and support by offering to look at your new posts for feedback and editing before you post if you would like it, comment on your posts to get the responses going to best support your efforts, help finding memes or images, and support you if we are dealing with someone struggling …. Like sounding suicidal or being manic…and I will check in to make sure you are happy and comfortable!

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. A co-leader works together with me for some new posts and drafting new questions and is concerned about the well being of all members and can empathize with their paths.

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 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!

#Depression #Anxiety #MentalHealth #ChronicPain #Chronicpainwarrior #Disability #BipolarDisorder #BipolarDepression #Bipolar2Disorder #Bipolar1Disorder
#Stigma #ObsessiveCompulsiveDisorder #ADHD #Autism #Dementia #Addiction #AddictionRecovery #Cancer #TraumaticBrainInjury #BrainInjury #LossOfAParent #Grief #SuicideSurvivors #ChronicFatigueSyndrome #DistractMe #HIVAIDS #longtermsurvivor #ChronicIllness #ChronicPain #MightyQuestions #DownSyndrome #IfYouFeelHopeless #Hope #Deafness #neckpain #BackPain #CongestiveHeartFailure #Migraine #COVID19 #PeripheralNeuropathy #LymeDisease #Diabetes #EatingDisorders #Headache #Stroke #help #BorderlinePersonalityDisorder #Fibromyalgia #Disability #thankful #grateful #EatingDisorders #CocaineDependence #drugaddict #alcoholic #PTSD #EmotionalHealth #physicalhealth PainAcceptance #Acceptance #relief #Selflove #MightyMinute #MentalHealthHero #TheMighty #RareDisease #MightyTogether

.

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How are you?

When I’m asked that question, and I’m depressed, as I currently am, I say: “I’m taking air in, and letting it out.” So far the only response I’ve had is laughter. Probably because I use humor yo cope. But when I say that, that’s about the extent of what I can manage to do. And if I’m having an asthma flare, or an episode of congestive heart failure… it’s even more of a struggle…#takingairin

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Undiagnosed, trying to navigate the healthcare system.

I've been trying to get answers about what the hell is wrong with me for so long I am starting to lose hope. Growing up my parents thought I was just a hypochondriac. Then when I was able to start going to doctors visits on my own and was diagnosed with #PCOS at the age of 15/16 I finally had proof that some if my symptoms were real.

I was finally diagnosed with #mitral vavle prolapse at the age of 26. Turns out that I've had it my entire life but no one cought it until just recently. In addition to the mitral valve prolapse I was also diagnosed with #CongestiveHeartFailure #rectocele #vaginismus #lymphadenopathy #BipolarDisorder #Hypertension #Sleep apnea and #PelvicFloorDysfunction .

I also fit the criteria for a lot of other conditions but I'm having a hard time getting clear answers from my doctors as to wether I do or do not have these other conditions.

Does anyone else find it difficult to actually get a diagnosis from their doctors? Even when you meet all of the criteria for such diagnosis?

My current issue is that I'm trying to get in to see a geneticists to get tested for #EhlersDanlosSyndrome and other connective tissue disorders. In order to do so you have to provide a lot of documentation showing why you should be tested for genetic conditions. Part of this documentation would include the conditions that you've been diagnosed with. But since I have not gotten an official diagnosis for many of the conditions I suffer from I don't have a way to include them in the documentation to send to the geneticist and I have been denied an appointment twice now.

It's like a puzzle. I need my doctors to help identify the missing pieces so that I can go to the geneticist and have them complete the puzzle but I am so tired of having to push and push and push to try and find doctors that are willing to run the tests and not just give up before the missing process are identified.

Why is the process so difficult? On top of it all I have suffered from #Undiagnosed #ChronicFatigue for the past 8 years and I just don't have the energy to continue fighting. But if I don't continue fighting then I'm only going to continue to decline. It's a never ending loop.

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