If you carry one thing with you today, let it be this: you are beautiful, you matter, and you are loved.
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“Disability” is an umbrella term which encompasses physical disabilities, emotional/psychiatric disabilities, neurodivergence, intellectual/developmental disabilities, sensory disabilities, invisible disabilities, and more. You do not have to have an official diagnosis to consider yourself disabled.
Mask up, love one another, and stay alive for one more week.
I can only mirror what Keld already wrote, any doctor should want to run blood tests. What the actual fuck was that appointment, love, I’m so sorry you’re being treated like this. And yes, get an endocrinologist to ask for these tests. There’s gotta be something somewhere that isn’t right and that they can measure.
The infections sound vicious, and I’m sorry again that you have to endure this time and time again. Is there no treatment at all that would prevent the ulcers and eczema from appearing in the first place? And if these are known side effects, shouldn’t there be treatment plans ready? I’m sorry, I can imagine you had this conversation before and are probably fed up with the lack of answers you’re getting.
My hair loss hasn’t really been diagnosed yet. My doctor did a thorough blood analysis and told me it could be my iron deficiency, yet even after a year of taking supplements and changing my diet to include more iron (which is almost impossible with celiac’s disease), my scalp is still itching and flaking, and my hair falls out rapidly all over my head. It’s very thin and most of the volume is gone by now. I finally managed to find a dermatologist and got an appointment for October. Nobody will see me sooner. Meanwhile, I’m trying not to scratch my scalp.
Thanks. I managed to get an appointment for blood tests tomorrow. The only reason they gave me the appointment is because I lied and said the endo had ordered them. I’ll google a list of hair loss blood tests tomorrow and take it and say that’s what the endo wants. As far as treatment plans, I have never had one for anything as far as I’m aware. They just treat whatever the issue is and then I’m discharged and left to my own devices until it comes back. This is for everything.
Have you tried Spatone iron sachets? It’s spawater that’s naturally high in iron.
That is a huge issue. Especially with cancer and the complications you have, there very definitely needs to be a treatment plan, if only to be able to avoid certain complications. I wish you the best of luck with the blood tests and I’m keeping my fingers crossed that they find the cause of your hair loss.
More generally speaking, it’s disgusting to think how many of your problems could’ve been avoided with proper aftercare. It’s not like you’re not trying to take care of yourself, and with the right treatment, you could’ve been just fine, and I hate how much quality of life and health you lost because of negligence and “cost cutting” in the healthcare sector. You deserve better than that
It took them 3.5 years to diagnose the cancer in the first place. My symptoms were vague, mainly tiredness and brain fog. They tested me for anaemia and viral infections. When those came back clear they refused to test for anything else. They said I was “too young for it to be anything serious.” So for the next three years I kept going back and first they said it was depression and gave me antidepressants. When those didn’t work they said maybe it was chronic fatigue syndrome/ME. Then I just got called a hypochondriac. At the time I was working as a carer in a nursing home, and my employer decided to give the employees private health insurance as a perk. I eventually found a lump in my neck and used the private insurance to go to a private hospital to get diagnosed. So it wasn’t even the NHS that diagnosed me. When I could no longer work I had to go back to the NHS as I could no longer have the private insurance.
A similar thing happened with my stroke (a side effect of the cancer treatment I wasn’t even warned about). If I’d been treated promptly I might not have been left so disabled. But it took so long on the NHS waiting list to start physiotherapy that the damage is done.
My point exactly, you got fucked, and you deserved better. God I wanna slap everybody who didn’t take you seriously, even though that won’t change anything. I’m so glad you are still here, despite the odds.
And I overlooked the iron water question, sorry. I tried getting some here but there’s no brands available, and ordering water online is too expensive. I have supplements that work, however my Celiac’s makes it hard to absorb much iron from the food I’m allowed to eat. The iron levels are rising, but my scalp does not seem to be happy either way.
Thanks, although I always feel I would be better off dead.
Spatone is a supplement that comes in boxes of sachets:
https://www.amazon.co.uk/Spatone-Supplement-Original-Iron-Rich-Relieves/dp/B0C2HV6Z1W
I know you do, but I’m glad you aren’t
And thanks for the link!
I’ve used spatone on and off myself in the past, it’s good. It is absorbed well and has never given me any side effects. You put one or two sachets in a glass, add some orange juice for vitamin C (to help absorption) and taste (the spatone tastes metallic) and chug it down.