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Mighty Family!!!! I have missed you guys so much and thought and prayed for you daily ❤️

Months ago I was at my very worst. My health had gotten so poor that I was fully bed bound and unable to do anything on my own. I also needed constant care with my memory getting so bad I forgot my name, who my family was, all friends a missing blavk hole where they should have been in my memory. I kept getting lost and confused not remembering basic words and my hands were still excruciating with their inability to work getting even more drastic. My pain was a 10+ though doctors only think pain is a 1 to 10 we know it still can rise to the thousands.

Suicidal thoughts were so bad I was actually planning though losing a best friend's to suicide at 15yrs old still kept me and will always keep me from taking a step no one can come back from that haunts family and friends and leaves things so very messy and heartbreaking.

My so-called pain doctor was still doing nothing after 3 years and countless appointments begging for help I'm any form. He kept me on the same teeny tiny dose for years and wouldn't try any other meds or any other options. I had had no episodes ever of overdose or failing any drug tests but still he refused to help at all despite my first appointment with him where he promised to help me get to where I could shower and dress myself daily.

I wanted to ditch him as my doctor soooo many times despite him being my third and last option since we hadn't been able to find any replacement.
I realized the stress and misery he brought me always and especially after every three month appointment. It wasn't worth the useless dose of medicine I was on. Many doctors left me in a lurch to taper off my meds on my own. I knew how to do it so I called and said I was dropping him as my doctor. From that moment on I felt relief like the biggest weight was gone. Yes my pain was excruciating but my mental health was the biggest mess because of so many doctors refusing to help and leaving me since I was 'too complicated for them'. They just didn't want to put in the work at time.

Why be a doctor if you don't want to help anyone?!

Steadily my mental health improved immensely. I had moments where I was happy though still in pain. Naturally I am a very optimistic and happy soul but moving to a new state and having the cruelest doctors unsurprisingly made me so much worse.

I have a home health nurse that actually wants the very best for me and that was priceless and enough.

And then I got a brilliant and lovely rheumatologist who actually asked intelligent questions, explained answers, and was invested in taking as much time as needed to finish solving my health. He UNDERSTOOD!!! And at my second appointment with him he told us the answers we had been searching for for 17yrs! Since I was 13.

On top of my many inherent diagnoses I had psoriatic arthritis spine arthritis, and rheumatoid arthritis!!!!
The thing that we all thought was lupus but just barely didn't fit was the psoriatic arthritis!
It was the last piece of a puzzle we had tried solving many a time.
Interestingly I had finally narrowed my research to these diagnoses and was months away from figuring it out too.
But I was very happy to have the answers early!

My first appointment with the rheumatologist he gave me arthritis medicine and WOW did it work and so much better than any medicine my hundreds of doctors over the years had tried.
My hands improved!!!! I had feeling in them again and was able to do so much more than I had since I was 16 when I had my waist down reconstruction surgeries that would lead to arthritis all over my body especially to where I was completely unable to use my hands by 17. It was so embarrassing and painful that my body seemed so intent on not working eight. Oh how I just wanted you be normal!!!

And my last but of good news is I at LAST got a new pain doctor after being without officially for three months. My mental health anxiety and depression had improved so that my stress and thereby my pain had decreased to #9 on the pain scale!!! After being a 10 for almost 8 years!!!!!

My new pain doctor was COMPLETELY the opposite of my last one.

From a guy who ALWAYS worse fancy suits and thousand dollar shoes to one in jeans and a t-shirt.
From a guy who never smiled and wouldn't put in time and effort to a guy who smiled the whole appointment and was ready and Excited to put in the work to help me live my very best life!
From a guy who was too proper and cold to one who was so friendly and happy about his job.
From one who was terrified of any teeny hit of using medicine to one ready to take any risk if it meant helping his patients be safe but with less pain.

My new doctor was like the twin of actor Vin Diesel and he was so SO SO tall!
Even better since the drive is so hard for patients to do always, he would do telehealth for two appointments, one in person, and then another two telehealth appointments etc. Yay!!!!! Hallelujah!!!
Lol I was and still am so happy! And he wanted a telehealth appointment a week after the first appointment yo make sure my new meds were the best option.

For YEARS I have wanted a doctor who was there to help always and one who helped me with my meds rather than drop me in a black hole and leave all alone to figure out and guess by myself. To actually be a TEAM and work together to help me help my body so I would LIVE like I had begged all my doctor to help me to no avail! I could have a LIFE that I loved and do fun things and spend time with my family!!!! No more sleeping life away in pain and misery and hopelessness!!!!
It only took 17 years! Haha!

So now I am BACK and back to my happy self. I still have aches and pains full body and I have all my health issues and more besides but I am in a better place than I have ever been.

All of your support and love and encouragement to take time for ME was what I needed. I am so thankful for it and for all of your help over these many years.

Now if only it could get easier to post with no problems like before I would dare to call life quite perfect right now ;) 🙏

So consider this a reminder thar life is worth it! If things suck now, just remember that if one day they come up with something that can help you and your conditions, I PROMISE you will want to be around then to live your best life.

Hold onto hope! DON'T GIVE UP!! Please please don't. Through sheer will and the grace of God I am still here and gosh do I look back now and say it was worth the wait I wouldn't want to relive it lol but having a possibility to go to the movies again and do fun things out in the world with my family? It is priceless! Please hold on. Please. You and your best life are worth it! You are Not alone in this.

I am cheering you on and I am on your side. Your happy is out there! You CAN do this!!!!

#AmplifiedMusculoskeletalPainSyndrome #Arthritis #Asthma #Anxiety #bedbound #ChronicFatigueSyndrome #CheckInWithMe #ChronicPain #ChronicIllness #ComplexRegionalPainSyndrome #Depression #Disability #DistractMe #EhlersDanlosSyndrome #Endometriosis #Fibromyalgia #GastroesophagealRefluxDisease #HypothyroidismUnderactiveThyroidDisease #Grief #Insomnia #Lupus #Lymphedema #Headache #PosturalOrthostaticTachycardiaSyndrome #Psoriasis #PTSD #plantarfasciitis #PanicAttack #PanicAttacks #Psychosis #PsoriaticArthritis #RareDisease #RheumatoidArthritis #AnkylosingSpondylitis #MentalHealth #MemoryLoss #MightyTogether #SuicidalThoughts #Scoliosis #Migraine

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What I wish my Doctor did before deciding I deserved physical and mental abuse.

In 2010, I already went through 2 years of going blind in my eyes. No answer but great job trying to find one. Shots, drops, and full blown surgery. Still keep coming.

Many new issues in 2010. Pain there was no answer. Headaches. Pain so severe in my armpits, neck. Family Doctor: I am faking it because she had no idea what it was.

Then dots all over my lungs. Another new problem, I severe triggers. I say my oxygen goes to 70 on pulse ox. Doctor I am faking it.

Go to lung doctor. Multiple issues that my family says get a new lung Doctor. Hygiene: sneezed into paperwork he handed to me. Did not tell me in biopsy that I could get collapsed lung but got one. Left biopsy on my bed that was wheeled into the recovery room. Wife found it and gave it to the nurses. Collapsed lung, quickly discharged from hospital and sent to off sight imaging center. Told you have a collapsed lung, we have an ambulance on standby. Lung Doctor: go home. Nothing else.

Eye Doctor: If lung biopsy is sarcoidosis, that is your eye problem and we can get proper help now we know what it is. Ask lung Doctor for records.

Family Doctor: I try to say exactly what the eye doctor is telling me. Ok, my mistake. I thought they talked to each other. Going on for 2 years. Doctor tells me, 2 other patients get no treatment for sarcoidosis, so I will not consider it for you. Eh?

I want to be out of work until an answer can be found why my oxygen goes so low. Triggers. Cold weather. Smoke. Happens one step out of my door. You are faking it, best place for you is at work. Work telling me unless you get out on disabilty, they will can me.

Go to lung Doctor and ask for records. He says and I quote, “No one needs to know what I am doing” Adds “Plus Sarcoidosis is nothing in your eyes, a couple of drops and it goes away.” I tell him about triggers. They happen one step out the door. Can’t breathe. No air in nor out. Tells me to go to work and ask about a certain welding. That welding he is referring to has been banned for over 30 years. It is not welding.

I got to eye Doctor, she asks for records. What did he say? Lung Doctor refuses and I say what he told me. My daughter was present at this appointment. Eye Doctor calls lung Doctor ignorant. Tells me, get a new lung Doctor. Tells me where, not whom though.

I plead with family Doctor to not send me to work. I am going to die. She brushes me off. “You are not going to die”. I tell my wife, I am going to die today. When I do, find out what is wrong with me as I am not making it up.

My co-workers will not allow me to do anything. Does not matter, it is the cold weather. Friday, I leave work to go into cold weather. I get to my car but I can’t get air in nor out. I pass out. Some long time later, I come to. Hundreds of co-workers gone, I am only one in parking lot.

Saturday, I call family Doctor to request a new lung Doctor that my family had been asking about for months now. Family Doctor says and I quote, “He is my lung Doctor, so he is your lung Doctor”. I repeat. She repeats. I repeat louder. She repeats louder.

Go to eye Doctor. She tells me and I quote, “So your family Doctor was wrong what is wrong with you?” Walks out of appointment.

Why for 14 years running has no one ever asked, “What happened to you?”

Why not ask me why I did not want that lung Doctor?

Why did I not dismiss that family Doctor?

That was 2010.

2011 my oxygen goes to 70 in surgery Easter. Never received an answer why.

Many real nasty things said to me. 2011 thru 2015. What I believe is how my PTSD started was when my heart stopped twice in 2014. I asked my family Doctor, “Why was I not helped?’

Family Doctor says, “you were not helped because you talked about other Doctors and some Doctors don’t like that”. Added, “I no longer use lung Doctor anymore because of all the compliants”

So 14 years of both physical and mental abuse because I told the truth about a lung Doctor she no longer uses because of all the other complaints.

Just some of the quotes:

Go kill yourself.

No one cares about you.

You deserved it. (Multiple times)

You were lied to going back to when you were first disabled.

You will find it impossible to get proper mental help because of how you received the trauma.

You were given prednsione induced diabetes 9.0.0.4 A1C, heart failure and kidney failure on purpose.

You must agree that you wanted your lung problem to be Sarcoidosis or you will never know what is wrong with you.

You must agree your family Doctor (who told me to go kill myself) did not know about mental health disease.

You should fear what more Doctors could do to you.

I have been blocked from leaving a Doctor’s office once. Physically blocked. You can hear me on recordings asking to let me go. They were trying to TRIGGER a response.

PTSD diagnosed 2018, not told. Told to leave and find care elsewhere.

Stop going to Doctors.

Last mental health provider told me CPTSD was because of asthma mistakes which is a lie. It was on purpose and those words that family Doctor has said to me is what I think about ALL THE TIME.

I see no path forward. Only if the family Doctor wants to admit she did not help me on purpose because I talked about a lung Doctor she no longer uses.

Now it is WAY more important to protect all those providers that failed to help me because that family Doctor said to do it. That I deserved it.

So I stopped going to Doctors long ago. No more lies. No more physical abuse. No more mental abuse. No more blood pressures 200/120. No more chest pain.

I have papers that say, severe high risk asthma. Doctors have known it long ago. They are screwing with me. Do no harm is just a bunch of words. They have no meaning in real life. All it takes is one Doctor to say you deserved to die. The rest do nothing but try their best to join in. Or cover it up.

The good providers I can tell who they are. They dismiss me as a patient after one appointment. They don’t want to get involved. So my choices are the wolves or nothing. I am done with the wolves.

Why was I not asked why I did not want that lung Doctor? None of this had to happen. NO ONE DESERVES THIS.

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Physical Abuse

I am here to heal myself. I was constantly hit as a small girl. Additionally, I had asthma and was forced to clean the house-which was very dusty- as early as five years old. When I became near sighted and could not see dust or crumbs on the floor my face was pushed roughly to the floor because I was not believed. I never knew why I was being hit-it could happen at any time night or day. I was a straight A student and did well socially but that did not register. I had to beg my parents to come to graduation where I was the valedictorian. They withheld money, too, and my clothing was second hand. The only things they cared to make sure we had was dentist care (but would not pay for novocain) and shoes. Maybe because they are signs that teachers look for. I went to school with many entitled wealthy kids who treated me as the poor kid because of my clothing. Until third grade I did not know what fresh bread was-day old bread was cheaper. Here's the kicker-my parents had money! They had "cheap" disorder. Anyways, I am letting out a lot of this here because I see not too many people respond or read it.But It's scary in this cancel culture to expose yourself this way. So please be kind if you do respond.

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Harder each day

I am struggling with chronic pain. I am still trying to work. Yesterday I was so out of breath I had to go in my office and put my head down to catch my breath. Today I tried a nebulizer treatment but it won't last until I need it. I am getting weaker and more in pain every day 😢 gastroparesis, asthma, chronic pain in left lung, PTSD, BPD, GERD, dyslexia, hearing loss, depression, microvascular angina, pretty much everything wrong with me 😩

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"I'm So Sorry You Have To Deal With That"

Not too long ago one of my doctors wanted to make an adjustment to the dosage of one of the meds I take for #PosturalOrthostaticTachycardiaSyndrome .

It went very poorly.

Anyway, I had to control my symptoms fairly publicly one day. I even sat out in the rain for a bit to help with self-regulation. I was barefoot, without a jacket, and it was maybe in the 40s, but my CNS did not care about facts at that moment.

So I ended up sharing about my chronic illness with a few new people after that.

After my follow-up w/ cardio, we determined that I'd be staying at my usual dosage. From there, I let myself get back up to maybe 75% baseline functioning and then basically put it out of mind. Since I was just returning to a prior dose, I figured the rest would come.

I saw one of the people who had recently found out about my diagnosis, and she asked for an update. It took me a second to figure out what she was talking about, having already filed it away in my mind, but I brought my brain up to speed to have the conversation.

I have different levels of routine answers about my medical issues depending on how much the person asking really cares to listen/ is actually asking.

I ended up explaining how POTS was actually one of a system of medical issues I have stemming from a genetic condition #EhlersDanlosSyndrome .

It was then that she said she was sorry I had to deal with things like that, and I genuinely had to sit back and think what that meant.

"Things Like That".

I then was probably more honest than I needed to be with her, and more honest than I usually am, with general intro conversation about my 'genetic stuff, but I was talking as I was processing... ' [Especially because I saw her tear up while I was saying it- whoops]

I told her I have no concept of what it is like not to be dealing with it. I don't know what it is like to not be in pain. I don't know what it would be like not to be thinking about when to take my next medication or what my water intake is. I don't know what it is like to go more than a week or two without seeing a doctor. I just have never had that room empty, and I can't comprehend what it would be like to have that space.

#ADHD #Asthma #ObsessiveCompulsiveDisorder #PTSD #Depression #MastCellActivationDisorder #Migraine #ChronicVestibularMigraine

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Sewing a bit #Fibro #Asthma arthritis #Migraine etc

I decided to make this quilt for myself. Over 30 years since I made one for myself

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Question. Going to another Dr like the Urologist, should or shouldn’t I

Should I postpone Dr appts for urologist, neurologist, pain management, etc that are follow ups?

What should I do to prepare to be around others in a waiting room?

Masks - I have trouble with masks. They not only raise my blood pressure they trigger asthma attacks.

Gloves? I know to use hand sanitizer. Anything else?

These may seem like silly questions, but I really need assistance.

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Hey y'all!

I'm new, my name is Labradored. I am here because of multiple medical and mental health issues. My oldest daughter was born with Rett Syndrome (a pervasive developmental disability with serious health issues) and died from a seizure in my arms at 12 years old in 1993. My youngest daughter died in a car accident at 17 in 2000. They were my only children. I was so very blessed to be their momma.
My medical issues include long term insulin dependent diabetes II, exocrine pancreatic insufficiency, Celiac disease, asthma, osteoarthritis, severe food, drug and environmental allergies, dysphasia, Barrett's esophagus, eosinophilic esophagitis, GERD, chronic stomach issues, and IBS.
My mental health concerns include Major depressive disorder, generalized anxiety, OCD and ADHD, and complicated grief related PTSD.
The memes on this site are helping me get through this current gastro flare, I've been nauseous all day today with vomiting and diarrhea for the last 12 hours . This happens about twice per month. My food menu is quite limited due to allergies to gluten, soy, most non citrus fruit, lactose intolerance and tree nut and peanuts. I feel like I develop a new food allergy every year.
My medical issues began shortly after my youngest girl died. Don't let anyone tell you that grief is just an emotional response, grief has wrecked serious havoc on my body.
I have a wonderful husband, supportive and loving friends, a great career as a behavioral health counselor and three fur babies who provide unconditional love and entertainment.
Most of the time I manage pretty well, but when my health conditions flare, it tanks my mental health as well.
Looking forward to sharing and receiving. 🩵🩷 Blessings upon you all.

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