Hi, welcome. I’m Liz, a spoonie living with multiple chronic illnesses - dermatomyositis (progressive muscle wasting disease), interstitial lung disease, psoriatic arthritis, type 2 diabetes, migraine (which comes with horrendous sickness) and mental health issues - depression and anxiety (which thankfully have been under control for quite some time now). On my channel I share my life - the good, bad and ugly and always aim to promote positivity, self-care and self-love.
You can also find me on Instagram & TikTok spoonie_lov3
So many things I agree with you. Can’t tell you my story it’s to long and it makes me angry. I feel myself that my body as not gotten a chance to self heal. Looking at homeopathic treatments. Just don’t want long term medication that’s not working for me. I do wish you health luck and happiness as everyone deserves in this world.
I really hope the alternatives work well for you. I had a very sympathetic GP today who said it was really a lot for someone to be dealing with this amount of illness and medication. I desp want to start weaning of some meds due to the damage but doing so would create havoc. It’s a no win situation. Thanks for reaching out. All the best from me ❤️
@@spoonielove3598 I have most all your symptoms and a bunch more. I do have Dermatomyositis. Your DM story sure feels a lot alike alike. I also had the problem with my bowel muscles and said same thing for years. I also have UCTD, hEDs, hypertension, carotid artery disease, endometriosis, chronic fatigue, POTS, and too many to list. It took years to finally come altogether. I even have Myasthenia Gravis my rheumatologist said.
I have DM too. I’m glad you made this video. I have felt like I was dying too and when I wasn’t diagnosed yet it was very scary. Still is but at least I have the validation. Took years!
Hoi Spoonie Love I wrote a comment on your blog , seven my months ago. You Tube presented me with your video. I was on my fourth flare. Iwan amazed, it felt like all this crazy symptoms it was me. Especially the neck issue.Because I have another autoimmune disease( rare aswell) it is called cVID common variable immune deficiency it complicated matters I have a low IgM and IgG which normally people have which are antibodies which naturally make that your own body can fight infections/ diseases / viruses.Finally now I am admitted in the hospital. I have taken photos from rashes, swollen fingerknuckes , inflamed fingernails etc. The doctor gave a compliment to me because of he felt that I had documented everything so well. He did know that in the worst of a flare/ episode you can not lift your head from the pillow. Finally I could talk openly. I want to say to you that this video you made is a real document. I will show it to my doctor. Your video has been extremely important for me. Unfortunately it took me such a long time to come across a doctor willing to listen but also recognizing some of the most important symptoms like the neck issue. Thank you so much.
Congratulations Liz..you should be so proud of all you have achieved!! I bet way back 15 years ago you'd have never thought you'd do so well in your studies!! I'm very proud to have watched from the sidelines to see your success!! 🎉😊❤xx
3:18 I was crying with you 😢💔 I have always been the strong one too, for my kids, my mom, my sister. Always there to support and provide. Now I can’t even wash my hair or dry my own back after a shower. I had have a + ANA Nucleolar labs for decades, pain, IBS, ringing in my ears, Raynauds, muscle pain and weakness, wicked fatigue and cognitive issues but I am still undiagnosed. This is a cruel disease. 💜
I am so sorry you haven’t yet been diagnosed ❤️ I remember that being my worst time, just not having something to “officially validate” the suffering. Sending love and gentle hugs 💙
My son took Tamoxifen and had horrible side effects. Now he is fearful of most meds. He is considering Rituxamab treatment. Why did they stop Ritux? Did you have any pain associated with your condition and did it help with pain?
I am going on 750 mg of Mycophenolate starting tonight. I really am worried about the stomach ache and vomiting side effects. Did you get those side effects right away when first taking this drug?
Hi Marla. It worked really well for me. I haven’t had to have any more after 3 lots 6 months apart. I was also on other meds too though, Tacrolimus which I’ve now had to stop because my kidneys and liver are not happy with it. And down to 5mg prednisolone
Hi, I just recently started watching your videos as I was searching for keto videos and one of your older videos came up. But then I noticed you have chronic health issues and autoimmune disease(s) which I’m always interested in learning more about as I also have health issues (although not the same as yours, but I still find it interesting). Anyway, I’m so sorry you’ve been going through so many problems with your cycle etc. I just wanted to offer some advice based on my experiences. Firstly, I’m so proud of you for standing up for yourself and advocating for your own health. You definitely made the right call and it’s lucky you didn’t just listen to the doctor saying it’s due to your age. Regardless of your age, it’s not “normal” to have so many problems with your cycle/period/heavy bleeding/pain etc. Now, I’m not a doctor or medical professional of any kind, so take this with a grain of salt, but to me, it sounds like you have endometriosis. All the symptoms and your story fit. The heavy bleeding and problems with your cycles etc and the findings from the ultrasound too. Especially the bulky uterus, and if they mentioned the endometrial lining (as endometriosis is when the endometrial lining ends up in places where it shouldn’t be). However, the only true way to diagnose (and treat) endometriosis is with surgery (usually a laparoscopy). It can’t officially be diagnosed through any ultrasounds or CT scans or blood tests. However, obviously it’s still important that you get checked for cancer etc, but if i was you, I would be making an appointment ASAP with a gynaecologist to discuss and see what they think? I would push for the surgery if it was me though cos it sounds like you’ve been through enough already and I wouldn’t keep putting up with it and being told it’s due to your age. I don’t know how it works where you live, but here in Australia, we need to go to our GP first to get a referral for a gynaecologist and then move forward from there. It’s usually a straightforward process though. Hopefully it’s a simple process for you to see a gynaecologist too? Anyway I’ve had surgery to diagnose (and remove/treat) endometriosis and also had a mirena IUD put in (similar to the coil you’re talking about I think?) and my symptoms drastically improved and so did my quality of life in regards to my cycle and bleeding and pain etc. As I said, I’m not a doctor in any way so feel free to completely ignore this (lengthy, sorry) comment, but just wanted to offer you my advice based on my personal experience with endometriosis. Hope you feel better soon :) From Jess :)
Hi Jess, Thanks so much for reaching out. Your comment has been so helpful and reassuring. I think gynaecology will automatically be involved now that my scan results have shown what they have. It was the hospital who requested the bloods and who have said I should repeat the scan in 6-8 weeks. Out of interest, did you ever get anaemic with this? I really appreciate you taking the time to comment and for watching my videos :)
I have cerebral palsy and neuropathy I know how you feel I feel the same. Having one or two good days without feeling exhaustion constantly and then it just hits you with all the pain
Your body has most definitely told you that it is NOT liking when you step away from your plan for too long! Self sabotage.....I soooo struggle with that one, I wish I had a magic pill to stop it!!!
I have been working in the healthcare industry (pharmaceutical side) for a few years and what I have learned......don't just blindly trust a doctor! Not that I saw anything bad....but I have seen the mistakes come through from offices and it just reinforced that they are just human and make plenty of errors! Good luck with your health!!!
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I love that you actually recognized how your body felt when you were eating bad. I’m with you…when you step off the plan it is sometimes so hard to get back on track! You’ve got this!!!
Hey :) I respect your motivation to keep working hard on losing weight! It's motivating to see! New subscriber to your channel 💪🏽 love to help each other grow more
Hello :) I love how inspiring you are when losing weight, because it's not easy to stay disciplined and work hard everyday! New subscriber to your channel ❤️ love to help each other grow more
Hey :) I love how much work ethic you have on your weight loss journey! It's great to see how hard you work and inspire others! ❤️ New subscriber to support your channel 💪🏽 love to help each other grow more
Hey :) I respect how dedicated you are to lose weight, because you help others who want weight loss as well! New subscriber to your channel 💪🏽 love to help each other grow more
