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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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Hi everyone.

My name is Alexis I'm 26 years old.
I'm new here and I joined to make friends and feel less left out I have many chronic conditions... Asthma, bipolar 1, Pica, anxiety, atopycal dermatitis, IBS, fatty liver disease, Hay fever and pcos.
I love drawing, writing stories, I love a lot animation in 2d and learning stories and I'm good at baking.
My first language is not English but Spanish.

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sickness loop

I know 2 posts in 1 day, crazy right. Just having a difficult time right now with what I call the 'sickness loop.' Over 3 years ago at age 17, I fell severly ill after catching covid. Since then I have struggled wih various health issues, and I feel like I can never take a breath. Now at age 20, my body is in shambles. It went from eosinphilic esophagitis to severe gastroesophogeal reflux disease, to irritible bowel syndrome, to asthma, to anemia, and finally to a immunocompromised immune system. It has been a struggle if I am being honest. The constant fighting a sickness has left my mental health always exhausted and drained. My entire personality has flipped and I find myself just wanting to be alone most of the time. I do everything right with taking supplements, excersising, meditation, getting enough sleep, eating super healthy, researching my condiitons, etc. I just don't understand why I got so sick and why I have stayed so sick. I am sure all of you feel the same, so don't be afrad to reach out so we can all fight this together.

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2024...you're kinda kicking my butt here lol. Anyone else on their 2nd or 3rd antibiotic already? Attempting to 'push through'?

We're in the 2nd month of 2024 and I'm on my 2nd antibiotic 🙃

(there was a high chance it would've actually been be my 3rd lol. Thankfully my asthma fixed up)

Anyone else feel...almost punished by the universe lol?

I barely go out (part fault of chronic conditions, part agoraphobia tendencies) and yet I still get sick, sick 🤔

I'm told by so many to 'push through', but I am pushing.

Everytime I get to the toilet in time. The times I make it to work. Remembering key dates. Having a bath. Drinking enough liquids. Replying to that text...

To all those pushing already by just existing: I see you and I am one of you. It isn't easy, but we're really trying our best💜

#ChronicPain #AgoraphobiaWithoutHistoryOfPanicDisorder #Agoraphobia #MentalHealth #ChronicFatigue #Fibromyalgia #BackPain #Asthma #Anxiety #Depression #FunctionalNeurologicalDisorder #IrritableBowelSyndromeIBS #Jointpain #AuditoryProcessingDisorder

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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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