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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!


#Hyperbaric #Oxygen chamber

The basic principle behind hyperbaric oxygen therapy is easy to understand – oxygen is vital to the healing process. In normal conditions, only red blood cells have the ability to carry oxygen to injured parts. During HBOT, oxygen is dissolved in all body fluids – such as plasma, lymph, interstitial, synovial and cerebrospinal fluid. Increased oxygen levels, in turn, raise the body’s ability to create new blood vessels, build new connective tissue, and foster the growth of new cells.

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I’m back ! #MightyTogether

Hey Mighy Fam ! Long time no type ( litterally!). A mixture of my #CVID #UCTD . And apparently undiagnosable lung disease has ROYALLY Knocked me on my butt .

I was hospitalized about 2 weeks ago due to a lung infection and lung flare and it still feels like my body is MAJORLY recovering ❤️‍🩹 .

I’m also trying to figure out ALOT of things with my medical team
Right now . The belief is that the scaring / cyst in my lungs are caused by an infectious or inflammatory process . But of course no doctors are agreeing .

And it’s just a big pile of #Ugh !
#RareDisease life am I right ?! Ive honestly been struggling with a bit of #Depression . Not in a chronic sense . But in a “ man my situation REALLY sucks sense .” So I’m
Just doing all I can to keep my head above water

Today was one of my most productive days in a while !

I washed the dog , played my Uke and sang for the first time in weeks ( even though breathing has been so hard. My oxygen needs have been a bit more . And well I’m
Crappy at wearing my #Oxygen .. so I’m my own worst enemy in that department 😅)

And I just submitted a new article to the mighty about #CVID #PrimaryImmunodeficiency So 🤞🏻🤞🏻 it will be published and you all
Will read it soon!

So today definitely a #babystep
And I have an appointment with my councilor tomorrow to continue to work to get in a better headspace

But I have a goal to be more active on here ! I have missed you all !! ❤️❤️❤️. #StrongerTogether

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Who is to say which is more valuable #DistractMe

I sentiment I have super mixed feelings about is whenever someone tells me

“ You have just missed out on so much “

Do to my illness.

Like I know my life is far from the

“Normal route “

Is life suppose to be this “ paint by the numbers”

Sort of deal ,
Where every experience crossed off the list , is Colors added to your canvas .

Until we all have this super similar painting .

But what if my picture isn’t so simple .?

What if everyone else got monets
Water lilies .
A slightly abstract but mainly straight forward view of the picture of their life

And I got Van Goghs “ Starry night “
A random mixture of strokes and swivels , lights and darks.
That comes together to make something extraordinary.

2 completely different paintings.
2 completely different life experiences

But who is to say which one is more beautiful.. more valuable .

Just like how Christmas lights , and Roses
Both are beautiful. Just in a different way.

Why can’t people’s lives and life experiences be the same ?
#MightyTogether #RareDisease #Oxygen #UndifferentiatedConnectiveTissueDisease #Spoonie #LungDisease #CVID

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#TheMighty Merch helping me rock and appointment filled day! ❤️ 💪🏻

On day full of PFTs , and follow ups .
Nothing helps you feel for #mighty
Than my @themightysite shirt and jacket!!! ❤️❤️

Seriously. I love this shirt ! And LIVE in this jacket ( I feel and you can’t see the mighty label . But it is the comfiest jacket EVER.

All in all today was a sucsess. ( even though my eye preassures and lungs are struggling !) ❤️ AND being able to spend the day with my mom was such a blessing!

#smileon🐷 #spoonie #MightyTogether #chronicillness #itsagoodlife #socialbutterfly #extrovert #blessed #nasalcanula #Oxygen #Glaucoma

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Groovy Vibes #ChronicObstructivePulmonaryDisease

Happy to be here to share the love and life that is given me. It’s just a breath away. Enjoy it while you can. #Oxygen #Anxiety #ARDS #Asthma #LungDisease #Winner