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EDS and HSD awareness: week 3

I'm a little late but here the week 3

Day 11 – A Practical Tip That Helps

My walking stick for everyday. Don’t miss a meal and stay hydrated. It makes the symptoms worse, even if it’s hard to remember. A structure and a gourd are my best allies to remember them.

Day 12 – Thank a Healthcare Professional

My physical therapist, without whom I would be in the most complete pain

Day 13 – Living With Comorbidities

For me, it’s autism, asthma, orthostatic hypotension, and chronic urticaria.

Day 14 – Something I’ve Learned From Research

It's the Road to 2026 who gave me hope because right now, it’s up to the patient to assemble a medical team as best they can. From now on, he will have a real medical protocol for monitoring EDS and HSD. It’s no longer the specialist doctor who will impose on us when he wants to see us or not. There will be a real framework.

Day 15 – Wear #reds4veds

Day 16 – My Type, My Experience

I want that people understand hEDS and HSD are a chronic illness with more consequences that just hypermobility. Even at 21, I am learning new things about my body. It's not because Just because we don’t have terminal cancer (sorry, friends, but the able-bodied often use you to compare us) doesn’t mean that our experiences and problems don’t matter.

Day 17 – A Message to Someone Newly Diagnosed

Your experience matter. Your feelings and sensations matter. We must accompany you to understand your body, not reject you. Chronic illness will teach you more about life and your loved ones than a "normal" person would know.

Day 18 – What Rest Means to Me Now

I know it’s necessary now and I don’t reject it but we still have a complicated relationship. I try to understand it and adapt the rest to my life.

Day 19 – One Boundary I’ve Learned to Set

It's hard to set boundary.

Have a good week, see you Sunday

Wolf

#Autism #EhlersDanlosSyndrome #ChronicIllness #Disability

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Random thoughts #Fibro asthma #polymyalgia rheumatica # migraine #arthrits

Last night the temperature went down to 0 C (32 F). I covered the tomatoes with sheets beforehand to try to avert a frost damage. This morning, all looks good. Parts of my house look like a disaster zone, but do I have the energy to tackle the mess? Did a little sewing. Making a new quilt top. No rush for it. The quilting group at church has stopped meeting until September. I wish my body would let me clean, but…. I just have to live with this tired, frail body. However, I know that the Lord is with me, come what may

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Daddy Quail

This male Quail was roosting high up to keep a close watch over the other Quail who were passing through our yard. He was talking quite a bit.
#Nature , # birds, # sarcoidosis,
# spinal cord stimulator, # asthma

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Creamy Chicken and Dumplings #Asthma , #Sarcoidosis , # spinal cord stimulator

Made this easy recipe of chicken and dumplings. It was the perfect comfort food for a rainy day.

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I'm so tired of being disabled

I hurt. I'm tired of hurting. My skull is pounding. My eyes feel like they're being pushed out. My spine hurts from thoracic to lumbar. My right hip is shooting pain down my legs.
There are so many things I want to do. I want to go to GoB to get a first edition of Saga. But I also want to get some munchkin playing cards. It's one of my favorite games.
I need to take Pauley to the thrift shop for pants and shirts. I'm told I have good taste in clothes for women. As long as it's either Goth or witchy pagan.
2 years ago I got a very expensive necklace for Pauley and another one for my friend who literally saved my life. The other friend I got a necklace for up and moved to California and didn't say bye and that really hurt my feelings.
It's far too warm 🥵 in my apartment. We opened the window but it isn't helping. I'm sitting here in a puddle of sweat.
Early morning I had an asthma attack. I had to use my rescue inhaler. I could hear my pulse in my ears but I could feel it on my tummy. I'm also having really strange muscle spasms on my tummy and on my left eyelid.
I had therapy today at 3pm. We talked about some of the big things going on with my health and he was very gentle yet concerned. He knows how my adjustment disorder tends to be when this stuff happens. I told him my headache specialist suspects idiopathic intracranial hypertension IIH and he said it's familiar cuz 8 years ago my PCP suspected IIH. So we talked about how I have to go get a spinal tap. I'm waiting for a call from the headache specialist office.
That's a small update.
#IdiopathicIntracranialHypertension

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Brrr!

Yesterday we had strong winds with windchill well below-30. I made chili and served it with Sourdough French bread # #Migraine . #Fibro . #Asthma . #Arthritis . #polymyalgia rheumatica

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Moon crescent and a pre dawn sunrise

This was just before sunrise, while it was still dark. I love that you could already see some color in the sky at pre dawn.
#Sarcoidosis , #Asthma , #chronic pain, #spinal cord stimulator

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