Chronic Lung Disease

Meet Kristo—he suffered from pains in his body, fibromyalgia, three heart attacks, and one stroke, and has been using a sleep apnea device since 2012.

After 25 years of diligently following the medications and surgeries prescribed to him, his long-term doctors informed him in mid-May 2019 that they could no longer do anything for him. By this point, his body had deteriorated significantly.

He could no longer walk well. His vision was only 30% after two failed eye operations. Using two crutches, he could move a maximum of 100 meters before losing balance and falling over due to the pain. He had been suffering from chronic fatigue for at least 30 years, dragging himself through each day.

His wife, his caregiver for many years, juggled her job in childcare with an unpaid "job" as a nurse, driver, cook, cleaning lady, gardener, and chef, leaving her little time in her busy, hectic life.

Kristo was told to get comfortable in a scooter for disabled people and a wheelchair because that was going to be his life going forward. Their world fell apart - until a friend introduced him to our program.

See the new man! Kristo’s journey from chronic fatigue and debilitating pain to renewed vitality is just one example of how our program is helping many people get their lives back holistically, without medications and surgeries.

We are looking to talk to 60 men and women, especially those over 50, who have health problems and are serious about finding a proper solution.

Your insights will help us build a program tailored to your needs. Participants will be rewarded with a 10% discount when the program launches. It provides transformative results, by the way.

Interested? YES or NO?

Comment below if you want to participate!

Thanks!

#ChronicFatigue #ChronicIllness #ChronicDailyHeadache #ChronicLungDisease #ChronicPain #chronic #ChronicLungDisease #ChronicInflammatoryResponseSyndrome #ChronicPancreatitis #ChronicTraumaticEncephalopathy #ChronicObstructivePulmonaryDisease #ChronicOrthostaticIntolerance #ChronicVestibularMigraine #MentalHealth #Addiction #chronic #Anxiety #Arthritis #BackPain #CeliacDisease #CommonVariableImmuneDeficiency #ComplexRegionalPainSyndrome #Eczema #EosinophilicEsophagitis #HashimotosThyroiditis #ChronicLymphocyticLeukemia #HashimotosThyroiditis #InflammatoryBowelDiseaseIBD #InterstitialCystitis #IrritableBowelSyndromeIBS

When you live with a chronic health condition or disability, especially if you’re a younger looking person, young adult, or an ambulatory wheelchair user, there’s a good chance that you will have been unfortunate enough to have experienced some negative & hurtful comments from people.
There’s the classic comments that people living with Invisible Disabilities will have heard, for example “You don’t look sick.” & “It’s all in your head.”
Then there’s the unfortunate comments that people living with Mental Health conditions such as Depression & Anxiety will have heard, for example “Cheer up.” & “Stop worrying about it.”
And if you’re an Ambulatory Wheelchair User? Wow! The looks alone can be upsetting! I’ve lost count of the number of times I’ve been met by judgemental looks from people when we park our car in a Disabled Parking Space (I am a valid Blue Badge/Disabled Parking Permit holder) because I “don’t look sick/disabled” when I’m sitting in a car. These looks soon change when these people see my wheelchair but by then I’ve already started feeling awkward, embarrassed & like I have done something wrong when all that’s really “wrong” is that I have a neurological disorder which causes debilitating symptoms. It may be a brief moment of prejudice but that is still a brief moment too long in my books. It’s so important that we continue to raise awareness of the various chronic conditions & disabilities because it’s only through making people more aware these issues that change can happen & hopefully people with disabilities & chronic illnesses won’t have to deal with such rude, inappropriate & often upsetting remarks. In the meantime, when we heard comments that are hurtful or prejudice looks, we need to do our best not to let these remarks cause us any further damage or embarrassment – which is something that I definitely still struggle with a lot.
Stay strong, stay Mighty & by the best ‘you’ that you can be!
🧡💙💜💝
#ChronicIllness #ChronicPain #MentalHealth #Anxiety #Arthritis #BackPain #ChronicFatigue #ChronicFatigueSyndrome #FunctionalNeurologicalDisorder #ChronicDailyHeadache #ChronicLungDisease #Disability #ChronicObstructivePulmonaryDisease #ComplexRegionalPainSyndrome #InflammatoryBowelDiseaseIBD #IrritableBowelSyndromeIBS #Lupus #Fibromyalgia #Grief #ADHD #AnorexiaNervosa #Endometriosis #MightyTogether #MightMinute

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

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