Chronic Illness Diagnosis Story PT1 Blood Tests Ankylosing Spondylitis

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Күн бұрын

Пікірлер: 29

@fineartlifestyling Жыл бұрын

You have such a lovely presence ❤! Thanks for sharing. Took me 15 years to get a diagnosis. How did you find friendships and trying to explain this to people who don’t see the invisible disease?

@charleywendy Жыл бұрын

Thank you so much ☺️ I think the best way is to be unapologetic with how you are feeling, be open and honest. I always say if I am low on energy, physically or mentally. When I talk about my AS to my friends/family I still try and be positive about it though. I don't want them to feel sorry for me, or treat me differently. So I kinda talk about it as casually as I can, sometimes in a joking way. I feel that also makes them feel more comfortable talking to me about it, as they can see they won't upset me by asking questions. I hope that helps 🤗

@Blues16073 Жыл бұрын

My son is 32 and just got diagnosed this year. L1-L5 got caged and fused because he was almost crippled in pain. Not one Dr took a blood test to see if he had AS. His pain Dr ran the test on a whim and sent him immediately to a rheumatologist. She ran the tests and confirmed it. Thank you for sharing We don’t know anyone else who has this

@charleywendy Жыл бұрын

I’m sorry that you and your so are going through this. I know how hard it is to process. It’s good they have finally diagnosed him, now they can hopefully work on finding the right medication for him. I have actually now been on my meds for 1 year and live more or less pain free. Things should be get better soon ♥️

@undertow9993 Жыл бұрын

Thanks for sharing your (very familiar!!) story. I really feel people need to know that the spectrum of progression, and experience of, AS is very wide; many people live completely normal lives with the disease if they focus on their health (eat well, stay a healthy weight, don't smoke, stretch, lift weights and exercise generally). I was diagnosed 3 years ago, am 36, and am absolutely fine. I have a flare up once or twice a year which, whilst painful, is manageable. I dont need any medication. This is the case for many people for the whole of their lives. So many of these videos and articles focus on people with severe versions of the disease and it can be very daunting and unhelpful for people to see this, particularly if newly diagnosed. Its really quite possible that you can have a mild form of the disease which you can successfully control and manage. Why is it we only see the worst of AS online? Googling it is terrifying and you see content that is just not representitive of the reality and volume of people that live perfectly normal lives with AS. Stay positive and look after yourself ❤

@charleywendy Жыл бұрын

Your welcome! Yes, for sure. I caught my AS very early and therefore it’s very easy to manage. But your so right, mostly when we Google you only see the very worst cases of AS! I haven never thought about that before.

@piotrkowalski1564 5 ай бұрын

Thank you for this comment, I was diagnosed with AS around 3 years ago. I have mild version also. I got smallest dosage of sulfosalazine to get remission and 2,5 years was fine, now I am back on sulfosalazine to help back to remission. But sometimes I am catastrophizing and this comment helped me back on track

@jjpaix Ай бұрын

@@piotrkowalski1564I hope you are doing well. How are you now ?

@lilchadzy121 Жыл бұрын

I just got diagnosed with AS last week and it's been a lot to take in, going to start biologics soon and I'm scared but the pain is dibilitating. I wish you the best in your AS journey, friend

@charleywendy Жыл бұрын

I’m sorry that you also have AS. I have just filmed my 2 year update on my biologics. Hopefully going up this Sunday. I filmed it for people like yourself that may be new to this sort of meditation, hoping it can support you in some way. I talk about my experience on it! I know it can be scary at first, and it is continuing mentally challenging, but you’ve got this girl ♥️ once you find the right type of medication, your AS pain should hopefully be soooo much better. I’m more or less pain free because of my medication. Wishing you all the best 🤗

@martinwaby9946 2 жыл бұрын

Just been diagnosed myself took 14 years . I’m waiting for biologics so found this very helpful stay strong and keep inspiring

@charleywendy 2 жыл бұрын

Thank you for your kind words. I'm sorry it took so long to get diagnosed, at least you can start looking for the right medication now. The feature is looking so hopeful! wishing you well

@TheMaandyyy 3 жыл бұрын

so proud of you!!

@charleywendy 3 жыл бұрын

Thank you guurrlll😘🤗

@Star5dg 2 жыл бұрын

I have it too. We can beat this :). You are beautiful lol

@hollyheath1340 3 жыл бұрын

This is so similar to me but I never went to a doctor. I had alternating butt pain, felt like I needed to crack my hip but couldn’t. Had to use a cane, limped… I googled my symptoms, found ankylosing spondylitis and then joined Facebook groups. I learned that people were healing themselves by cuting out starch from my diet. So I cut out almost all starch and a year later, which is now my pain is almost gone. Now I only have pain in my lower back and it goes away when I crack it and walk. Idk if I should still go get checked or not. Sometimes I get a flare but it seems to be rare these days and I seem to get a flare when I cheat my low starch diet.

@charleywendy 3 жыл бұрын

This is amazing news that you were able to help yourself! Thank you for sharing your experience, it's really interesting. I think I might cut out starch, see how I go. Thank you so much!