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    Portable Oxygen Users Survival Tips

    How do you make using portable oxygen in public easier? I'm looking for ideas to help make returning to the office easier. #CysticFibrosis #ChronicObstructivePulmonaryDisease #MixedConnectiveTissueDiseaseMCTD #IdiopathicPulmonaryFibrosis #pulmonary

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    My journey of 3 years and still no end

    A post on the pain of #Scoliosis reminded me of my 3 year journey of non-#Diagnosis where it seems scolosis has played a part.
    Now I am quite #Disabled with many different items, but I'm just focusing in on May 2019 and its aftermath.
    An aftermath that is not yet completed.
    In May 2019, amidst the height of covid, I was taken to A&E with what turned out to be a #pulmonary #embolism , causing my right heart ventricle to be swollen and my lungs damaged.
    On blood thinners I joined the pulmonary #Hypertension and the lung clinics. Investigations of various complexity and risk ensued and the thinner is now for life as they could find no reason why I throw blood clots.
    Lung function tests showed I had little breath and wheezed and panted and coughed.
    But no reason could be found.
    After 2 years my heart and lungs seem to have stabilised. No further inflammation or increase in damage. But still I have no breath.
    At this point a consultant mentioned how low my #Oxygen levels were when I was flat in a scan and suggested I go to a sleep clinic to see if I have sleep #apnea .
    I was duly sent for test 1. When considering the results, the doctor mentioned that my scoliosis was no doubt impacting my ability to breath.
    I thought how interesting, especially as it seemed to be on the move, judging how tight and painful my muscles were and how my shoulder dipped even further.
    Just fyi, adult scoliosis has no treatment. No steel corset. No operation. Just bear with it. And see an osteopath or sports masseur.
    But still, my oxygen levels overnight are too low.
    And now I am back at the lung clinic. To see if I have asthma. I am given increasing levels of a drug for over an hour to stress my airways and bring on asthma. Mine it seems is very mild. This is not the answer.
    I have #Hypoxia but how is it caused?
    No answer is yet forthcoming. 3 years on and still more clinics and yet more tests.
    I admit to being frustrated and #depressed as my GP rightly says,by my health or lack of it. I wake up in the night again and again. My muscles cramp. I can't get comfortable. And get up in the morning slowly with no energy for the day. And no oxygen in my blood it seems!

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    CURING HUMANITY

    I’m a 19-year-old college advocate hoping to reach the FDA to promote the accelerate of cures/vaccines for incurable diseases. Please help by signing the petition and promoting it to your social media if you agree with my petition. We can start by passing the Promising Pathway Act Bill.

    For more information read my petition…

    www.change.org/p/janet-woodcock-m-d-accelerate-the-developme...

    iamals.org/action/promising-pathway-act

    ** TAKES LESS THAN 3 MINS COMBINED TO COMPLETE **

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    Question

    Does anyone with Pulmonary Sarcoidosis have a productive cough?Sarcoidosis #pulmonary Sarcoidosis,#chronic pain,#Cough #Asthma ,#Prednisone

    I never had a productive cough with my pulmonary sarcoidosis, but it is active again (in many areas of my body) and this time I have a productive cough.
    #ChronicPain

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    This pic of my cat, Buby, pretty much sums up how I'm feeling lately...

    I have been reading different posts on #BorderlinePersonalityDisorder & some of them have helped me immensely! Sharing these with family & friends helps them understand what I go through & what they can do to help me. It has brought me to tears just knowing that I can finally explain things to them & they are really taking it all in. I am struggling with physical health issues really bad right now. I have specialists in #hematology #neurology #pulmonary #Rheumatology #Migraine clinic #gastroenterology & #nutrionist . I am just so tired. My entire gastro system is @#&$%? I just want to feel better 😢

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    Drained

    Feeling the heaviness of life. My daughter has been home from the hospital a little over a week; 9 days exactly. No Covid-19 but she had a respiratory illness and was in the brink of getting a pneumonia. Luckily we caught it early. She did not need the intensity of high-flow oxygen like she did twice last year in September and again in October. However she did need intrapulmonary percussive ventilation (IPV). As I said she came home last Monday but some of these same symptoms started again yesterday 😢. I’ve started back with the breathing treatment regimen her pulmonologist sent her home on (for two days). I’m really hoping my daughter doesn’t have to be admitted again but I just cannot shake this feeling and it’s overwhelming. #RestrictiveLungDisease #pulmonary #Breathing #CerebralPalsy #GrowingWithKerstin

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    It’s been a busy time!

    I’ve been wanting to be more active and post more. I want the opportunity to have another article published as well. It has been such a busy and very stressful couple of months. My daughter has been hospitalized twice in less than a month; between the last week of September and las week, she has spent two weeks in Children’s Hospital. I’d like to share that with all of you Mighties!

    It has been a long time, a long time. I become a contributor with and have had a couple of articles be shared by The Mighty on platforms like Yahoo! Lifestyle. My published works "When Children Ask What's 'Wrong' With My Daughter Who Has Cerebral Palsy" and "How Back to School Is Different for Families of Kids With Disabilities" have been widely shared. Kerstin and I were featured on the cover of Montgomery Parents (Now River Region Parents) magazine where I was interviewed for the monthly Mom-To-Mom article. The photo shoot we had for the magazine cover blew my daughter's mind. She was a diva for days following. Then at the Special Needs Expo hosted by the magazine, Kerstin got the "royal treatment" and "celebrity status". Really big 'diva-tude'!

    It has not been all smooth sailing. As I am writing now, I am thinking about an appointment I skipped out on for Kerstin today because of exhaustion; physically, emotionally, and mentally. It is not easy or cheap to take that 2-hour trip several times per month to various appointments at Children's. This would be the third appointment since she was discharged on October 1st. Discharged? Yes! Now, let’s go back to the last full week of September, the week following the Expo hosted by Montgomery Parents Magazine.

    Expo day! Turns out the weather was not too hot; Kerstin was in a good mood; heading to work with mommy and gain some praises for being the celebrity cover girl. Things went well. Kerstin even managed to get a Target run in that beautiful Saturday. I made a few connections through my work, got to meet many families like our own; those raising a child or youth with a special health care need. She had just completed a round of a steroid burst 5 days prior and seemed to have been feeling better. The weekend was almost over and late that Sunday night Kerstin was not feeling well again.

    I am still giving Kerstin her breathing treatments; I mean I am taking her puffs with her wherever she goes. I made sure to follow the schedule with the bursts she had just completed and continuing to follow her daily medicine regimen. Why was she not feeling well again? By Wednesday, Kerstin was not feeling well at all! It was scary. I sent my sisters a message letting them know that she was not feeling well at all. My youngest sister Joan is a nurse and immediately she asked me to relay to her what was going on, asking how Kerstin looked. The rest: cpaware.blogspot.com/2019/10/breathing.html
    #CerebralPalsy #pulmonary #Epilepsy #Respiratory