You are such a lovely young lady (inside and out) and I’m so very sorry you have this horrible disease. I happened upon your channel and have found it both immensely entertaining, because of you and your lovely personality, and interesting, because we share Spondyloarthritis. I’m an old lady now (73) and all my life I have suffered from Ehlers-Danlos Syndrome (Type 111 - Hypermobile), Dysautonomia (or PoTS - Postural Orthostatic Tachycardia Syndrome) and Sjogren’s Syndrome which, now has yet another autoimmune disease joining in - Yes, you guessed it - Axial Spondyloarthritis, plus gut and bowel issues! It’s been diagnosed by my Rheumatologist and I’m presently awaiting an appointment for an MRI, with report, and Biotic medication prescription thereafter. It was very interesting to see and listen to all you had been through and prescribed. Like you, the first meds didn’t suit, and I feel OK about the injections as, in the past, I had a trial of new migraine medication, which came in an almost identical injection ‘pen’. I’m presently bed-ridden, because of all the awful symptoms and pain, so I’m hoping and praying the medication helps and affords me with some quality of life again, before I pop my clogs, as I have none at the moment. I just wanted to say thank you to you for all your videos and your kindness in sharing your experiences with us - and also for being so honest, entertaining and ‘real’ about it all. Oh, and you have the most handsome, beautiful cat! Give him(?) a gentle ear-rub from me. Bless you, sweetheart! Hug enclosed 🫂🙋♀️💜Stay as well as you possibly can and have a wonderful cercus life. Christine.
@carleybutler1707
9 ай бұрын
I just started treatment for my AS and my insurance wouldn't cover the auto injector pens so I have to use syringes and it's so intimidating (I'm in the US ugh). I appreciate your videos about your health experiences!
@charleywendy
9 ай бұрын
Oh gosh, you're so so brave for using the syringes. I don't think I would be able too! One positive thing I did hear about them is that you can control the pressure you push the medication into your muscle, so they don't hurt as much. And thank you, that means a lot 🥰
@PowderMill
9 ай бұрын
I’ve has AS since approx 22. I’m currently 58 and was finally diagnosed at 51. Live is just misery My spine is nearly completely fused now and kyphosis makes it difficult to even stand. I’m HLA-B27 negative and have been on 8 of the biologic class of drugs with zero results. Pain meds are very tough to get nowadays so it’s just a matter of planning how to end life without it being a painful ordeal or without traumatizing my family. But… fortunately the Joe Pederast Biden administration keeps the borders wide open so fentanyl can pour in and kill our kids. While… his DEA / DOJ / FDA / CDC / FBI keep the legit pain patients suffering. Ever try to find a pain management doc who will prescribe opiates in the NJ/ NYC area? Impossible! When I get up in the morning, it’s a task to get o the walker and “break” my hips )just to get to walk to the bathroom. It’d be very nice to see the idiot regulators experience suffering like this for a few days. Just to see how we are now forced to live. Ice channel btw! Thanks!
@Rae-qf7xv
8 ай бұрын
Those making such cruel laws have excess to Doctors that will prescribe them absolutely anything they want. Never underestimate the power of money and influence. Shameful state of what's suppose to be a modern,progressive world. Seems more like the world is regressing to a much more cruel and greedy hell.
@kristieangel5682
9 ай бұрын
I was recently diagnosed with AS. This is all new to me. 🤷♀️ 😢 it’s scary.
@charleywendy
9 ай бұрын
I wish I could give you a hug! ❤️ It was really scary at first. Just listen to your body and don't push it too much, don't feel guilty for resting and taking time for you. Once you find the right medication that works for you, you can live mostly pain free. Sending lots of hugs and positivity 🤗
@kristieangel5682
9 ай бұрын
@@charleywendy Awe!! Thank you doll. I needed to hear this today. I was feeling down. You’re a sweetheart. I subscribed to your channel. I’ve already watched a lot of your vlogs and have already learned a lot. I appreciate your advice. Hopefully 🤞🏼 the meditation will get sorted out. I need to put my mind at ease. I’ve been so anxious since my diagnosis. It’s a lot to take in, but I’m determined to stay strong. Sending you hugs and positivity as well. 🤗💕💕💕🥰
@drangonfliepink79
9 ай бұрын
Sorry ur going though this hun❤
@drangonfliepink79
9 ай бұрын
Use to inject myself with Clexane when in pregnant in my stomach the first time i did it from 6ichs away coz i was scared the nurse was shocked to see me basically stab myself yes do that
@charleywendy
9 ай бұрын
You did it, that's all that matters! The things we do to try and make this easier for ourselves! 🙈
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