Not Coping

It’s complicated indeed @Birdofparadise8 🙂

however, I see it as an opportunity to educate, inform, and instigate changes in systems so they become more accessible and aware that there are people with different health needs. I approach the people I speak with, with integrity, patience, and looking for an opening to use my story to think outside of the rigid systems and consider alternatives 🙂🙌🏻🌺

I don’t mind - it means I leave an idea of change with every step forward 🙂

Ok, yes I do understand regarding the lock. Please feel free to take your time, pace yourself, and run it through in your memory before you touch it ☺️

the immune disease I have stems from a bone marrow problem 🙂

it’s a bit complicated in the way it affects how immunity works, but in a nutshell, there are some misbehaving rogue stem cells in bone marrow that are making proteins and other stuff that do harm to my body. And while they are doing that, they are crowding out the good stem cells, so I have less of those available to make good immunity. I am critically low in certain immunoglobulins (Ig’s) due to that crowding in bone marrow, which are needed for immunity in all areas of my body (IgA I don’t have a lot of, and that is what sits predominantly in mucous membranes, and defends on contact in the airways, eyes, digestive tract, etc., so I am vulnerable in air that has germs or pollen, food I eat, and surfaces I touch).
The ‘bad’ immune cells/bad proteins are also creating problems in kidneys, bowel, lungs, liver, and heart (why I have problems absorbing oxygen, have kidney disease, inflammatory bowel disease, enzyme issues, and heart problems). Statistically, in Au, there are around 78 people across the country who have this disease; it’s quite rare, and difficult to get medics to hear you when they don’t have any knowledge of your particular disease or the secondary even rarer diseases it causes 🌺🙂

it’s also what is causing the neuropathy 🙂

it’s ok though Birdofparadise8, I’m alright ☺️🙌🏻

I explain it for you because I know how inquisitive you are - which is a good thing! - and things that make sense are much easier to understand ☺️💜🌺

Can you have a bone marrow transplant?

were you born with this? @Former-Member

omg I did it hahaha @Former-Member @Snowie

Yes, that would be one possibility @Birdofparadise8 🙂🌺

however in Au there are protocols for complex diseases: there are only singular opportunities to have certain treatments, for a variety of reasons, that the public system allows, so first, I have to go through other treatments (or have to have shown I am resistant or allergic to some treatments) before I am allowed to have some options that are out there.

I have already been through high dose intravenous steroids to try to stop the rogue stem cells, then I was on a year of intense immune suppression treatment for the same purpose (suppression therapy), and unfortunately neither worked.

the next step would be either targeted gene immunotherapy, or chemotherapy.

I wasn’t born with it, but I have had some significant gene mutations based on exposures to certain toxic chemicals when I was young, which have resulted in stem cell mutations that are aggressive at times 💜🌺

🙂🌺💜🙌🏻

it’s ok - what will be will be, and nothing will ever change who I am dearest 🙂🦩

Yay! @Birdofparadise8 😀🙌🏻🌺💜

hope the session goes well dearest 💜🦩🙂

It went well @Former-Member

I told him everything from the pool to the suicidal thoughts

Great news @Birdofparadise8 , thank you for sharing 🙂🌺🙌🏻

what are you up to for the afternoon? 🌺

Just picking up a parcel from uni and then going to the shops I didn’t get everything I needed for the bolognese/ lasagna I’ll do a batch of 500g mice and do half half.
then some more study.

what are you?
@Former-Member

Glad your appointment went well @Birdofparadise8

Sounds good @Birdofparadise8 🙂🌺

The bolognese and lasagne sounds really lovely - I hope you enjoy making and eating this evening ☺️💜

And also hope study goes well afterwards 🌺

I’m just in the in between time while the shanks are in the oven, doing some cleaning, and trying to get to some study I am lagging behind with, and hopefully waiting on the oxygen concentrator to arrive this arvo 🙂