Chronic Lung Disease

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“Listen to Your Body”

When you live with a chronic health condition there’s a good chance that you’ll have heard the phrase “Listen to your body” more than once. Which does sound a lot easier than it actually is because it’s not as easy to get your brain & body to agree!

#ChronicIllness #ChronicIllness #ChronicPain #FND #FunctionalNeurologicalDisorder #Arthritis #BackPain #ChronicFatigue #ChronicDailyHeadache #ChronicLungDisease #EhlersDanlosSyndrome #JointHypermobilitySyndrome #HypermobilitySyndrome #Fibromyalgia

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I'm back

So I haven't posted in a long while. Have had one health issue after another and it's just been to much. Pain from Carpal Tunnel has had me in tears with my hands curled up at my chest. But scheduled for follow-up test results and to schedule surgery end of the month. Thank God for CBD gummies. I might feel zombified but it lessons the pain. Nothing else does. Fell and sprained my ankle; which took like two different braces and 3 months to heal. Thrown out my back twice. Still homeless living in the back of my friends store. But you know what?? I am blessed I get to wake up in the mornings. I still have use of my legs no matter how bad my skeletal pain gets in my shins; I know it will pass. I get to bathe when my hands allow it. I know I am loved by many and I've gotten the first ten pages of my book getting edited as we speak. Yes, in many ways my live really sucks! However, there's so many more ways it doesn't. No matter haw bad live and our bodies crap on us, please remember to count your blessings when it starts to get bad. That's one of the things that brings my mindset to a better place. #MentalHealth #ChronicLungDisease #ChronicIllness #ChronicPain #EhlersDanlosSyndrome #Fibromyalgia #MentalHealth #Addiction #Arthritis #PTSD

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Asthmatic

Breathing is a gift, we take it for granted each day,
But for some, it's a struggle, that's hard to get away.
With every inhale, a battle rages on.
And every breath is fought for, until the break of dawn.
For those with severe asthma, the journey is long.
With constant battles fought, against a troubled lung.
The wheezing and the gasping, are a constant reminder Of the strength it takes, to overcome this hinderer.
But still they rise, with a determination strong,
With courage in their hearts, they fight where they belong.
For they are warriors, in their own right,
With a spirit that soars, and a heart that's bright.
So if you know someone, who struggles with each breath.
Show them kindness, and love, until their final test.
And know that in their struggles, there is hope and there is light,
For they are asthma warriors, and they will win this fight.
#Asthma #ChronicLungDisease

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For whoever needs to hear this...

"We are all a little broken. That's how the light gets in and out." - overheard leaving physical therapy. #ChronicIllness #Lupus #ChronicLungDisease #Depression #MixedConnectiveTissueDiseaseMCTD

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For whoever needs to hear this.. #Lupus #Depression #ChronicIllness #ChronicLungDisease

Not sure who said this but I loved it. "When a flashlight grows dim or quits working, do you just throw it away? Of course not. You change the batteries. When a person messes up or finds themselves in a dark place, do you cast them aside? Of course not! You help them change their batteries.
Some need AA...attention and affection; some need AAA...attention, affection, and acceptance; some need C....compassion; some need D...direction. And if they still don’t seem to shine...simply sit with them quietly and share your light."
Share with someone who needs to hear this.

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Work life balance, when your work is your life.

It’s 6. I responded to 50+ alarms last night. I was teetering on the edge of the bed I share with my child- trying to sleep between blaring lights and loud beeps. A normal night before a normal day. A friend recently complained about “work life balance.” Annoyed with being called at night occasionally-with how disruptive that was, how little praise was given. In my sleep-deprived state, I googled to see what the fuss was about. Forbes had some tips and I read them as a person whose “work” is indistinguishable from their “life.” “Let go of perfectionism.” No one is perfect, but some of us don’t have the option of lowering our standards. There’s never been a day when I thought I did enough- so I guess I’m doing this backwards. As a mom, I try everyday to be better. “Unplug.” Enjoying the moment is something everyone should do, especially parents who understand the fleeting nature of time. But, we track meds, and symptoms around the clock. “Exercise and Meditate.” Does crying in the shower count? (With the door open of course, because you are *still* “oncall.”) Workouts come in the form of running late to an appointment and getting to do all the loading and unloading at warp speed. “Limit time wasting activities and people.” When you’re a caregiver, often your priorities ARE someone else’s. That’s kind of the point. “Change the structure of your life.” This tip revolved around getting out of a rut, and focusing on the tasks you value most. Ruts are critical in a lot of households- without them, mayhem can take hold. I focus on what HAS to be done and that leaves dishes and an immaculate house sitting on the back burner. Delegating was mentioned, and I nailed this one. I got a roomba on sale. And now I delegate sweeping. “Start small. Build from there.” This is the only tip on the list that really resonated with me. The ONLY way that I can imagine having changes occur, is slowly and in bits and pieces. In some of the groups we celebrate inchstones, instead of milestones. Small, maybe, but mighty progress.
So how DO you find balance when your work and your life are one in the same? I still don’t know. I love my job, as a mother. I love my job as a caregiver, although I would give anything to go back in time and take at least some of the struggle from my child. Not because I want to “work” less, but because I want him to suffer less. While the husbands and friends out there are complaining about THEIR work life balance, I do wish some would look around and see the moms (all the moms, but especially those with medically complex kids, kids with disabilities, neurodivergent kids, etc.) that are not only oncall 24/7 usually in unpaid positions (hey! Check out the waivers in your state for paid parent caregiver options), but also don’t have the option of meditating in the park. For me, I think I’ll throw this imaginary scale out of the window and just keep on keeping on. #SpecialNeedsParenting #MedicallyComplexChild #PeriodicParalysis #SleepApnea #Disability #Rare #Laryngomalacia #Pharyngomalacia #ChronicLungDisease #Dystonia

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What do you do with durable medical equipment you don't need anymore? #LungCancer #LungDisease #LungTransplant # #InterstitialLungDisease #Asthma

Since I moved up to the Inogen One G3 I no longer need my homefill system but I do need the space it takes up. This thing is large enough to be added to my lease. I have been looking for months for a responsible way to move this piece of equipment on without luck. The company that gave it to me has changed names three times and denies any knowledge of me or the equipment (while trying to sign me up for additional equipment to abandon no doubt). I'm out of ideas. Have any of you ever been in this situation? What did you do? I want to do the right thing. But I'm tempted to set it outside the door of the oxygen company that supplied then denied it.🤬

#LungTransplant #ChronicLungDisease #COVID19 #Mesothelioma #non-SmallCellLungCancer #ChronicObstructivePulmonaryDisease #CongestiveHeartFailure

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