I won't stop until I find relief for my pain
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- Опубліковано 2 лип 2024
- Hey everyone, Daniela here! Spring has sprung, and while I'm thrilled to be planting herbs and enjoying the vibrant blooms, I'm also gearing up for a journey that's stirring a mix of emotions. I'm headed to Brazil soon, not just for the adventure but to seek some crucial medical insights for my fibromyalgia and ankylosing spondylitis. This trip is more than it seems-it's about managing pain, navigating healthcare hurdles, and facing the memories of past experiences. Join me as I share the real, raw side of traveling with a chronic condition, and let's support each other through our shared struggles. Ready to dive into this journey with me? Let's go!
🔶a b o u t m e
I'm Daniela I have been diagnosed with several chronic illnesses. I look normal, I do things, have a job and go on vacations, but inside I'm sick. I live with several chronic illnesses and they affect my daily life. I am in constant pain and struggle with brain fog. Although I'm constantly looking for new doctors, new treatments and solutions I have also accepted my illnesses and do not let them define me. In this channel, I share a little bit of everything. Information about my conditions, my travels, my dreams, my journey, my life. This channel is about life through chronic illness lenses. Come and join me and see what I'm up to lately.
🔶 p l a y l i s t s y o u ' l l l o v e 🎬
👉🏻 Fibromyalgia Chronicles • FIBROMYALGIA CHRONICLES
👉🏻 Self Improvement & Growth • Self-Improvement and g...
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👉🏻 Diagnosed with FIBROMYALGIA? What I wish I knew. • Diagnosed with FIBROMY...
👉🏻 10 unexpected struggles of living with Fibromyalgia • 10 unexpected struggle...
👉🏻 I Recorded My Toughest Fibro Flare - THIS is What It Looks Like • I Recorded My Toughest...
👉🏻 ANKYLOSING SPONDYLITIS - My Spondyloarthritis Diagnosis Story • My Spondyloarthritis D...
👉🏻 MY FIBROMYALGIA STORY - how and when I was diagnosed with Fibromyalgia • MY FIBROMYALGIA STORY ...
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#chronicillness #chronicpain #fibromyalgia
🔶 c h a p t e r s 📔
Thank you for this video ❤ On day 5 of a migraine flare in bed. So tired of this roller coaster. Your videos help me so so much. You are a beautiful and courageous soul, and I hope one day we can meet. Hope you received some more guidance from this rheumatologist ❤
It means a lot to me that my videos can bring you some support during these tough times. I'm truly sorry to about your migraine flare, I have had a migraine every single day since the middle of April and my abortive medications are just taking the edge off. I don't know why my preventative injection is not working.
I appreciate your kind words and I love connecting with you and others who understand this journey makes a world of difference. And yes, meeting one day would be wonderful! As for the rheumatologist, I'm hopeful that this visit will bring some new insights and much-needed relief.
Softhugs ❤
I feel your pain, I was out in my yard for a couple hrs. And now I can hardly move, had to just drop everything and try to recover, I have fibromyalgia and heart disease, 73yrs old, and recurring depression, so I can relate to your situation. Hope your MRA goes well and safe trip back❤
Thank you so much for sharing with us. It sounds like you had a really tough day, and I'm sorry to hear about the pain and fatigue you're experiencing. I totally get how frustrating it is when your body doesn't cooperate, especially after just trying to enjoy a bit of time in your yard.
Take care of yourself, and here's hoping your next days are filled with more good moments than bad. ❤️ I will keep you guys updated regarding the MRI.
I hope you will one day find relief in your pain!
Thank you so much. 🙏
I really hope your trip will go all good without a roller-coaster, I understand your pain😢God bless you❤
Thank you so much for your sweet words and understanding. It really helps to hear from someone who knows what this journey feels like. Your support means a lot, and it’s wonderful to have such caring vibes in our community. Let’s keep this kindness going, looking out for each other every step of the way. God bless you too! ❤️
Hi Daniella. Yes I hear you and understand so much. PTSD here from past medical experiences so absolutely normal lol. I said to my husband should something happen to me - if someone says at least she’s not in pain anymore, he has permission to thump them. That was morbid much. You do not know how strong you are until you have no choice but to be strong. Literally one step at a time. Meditation got me through my hubby’s attempt to crash - two weeks in ICU, then leukemia, then GBS. And more than anything I was so sad he knew/knows intractable pain. I am beyond happy that there may be treatment to reduce your pain. I also understand that our brains also go to that place where we are scared it won’t help. I’ve done emergency rooms around the world ugh but also know how privileged I am to have lead the life I have. I believe in you. I’ll think of you when I struggle to get out of bed most days but yes, moving, I think I can until I can then I crash 🎉. Safe travels, and do your best. You are your best advocate ❤ Ellen
Wow, your message really hit home for me. You’ve been through so much, and I can't help but feel connected through our shared experiences with chronic pain and the challenges it brings. Your sense of humor, even when it gets a bit dark, is something I totally understand. It helps to find those moments of lightness, doesn't it?
You're absolutely right that you don't realize how strong you are until being strong is the only choice you have. I've found that taking things one step at a time is not just necessary, it’s the only way to keep moving forward.
Hearing about your journey, your struggles with PTSD, and the resilience both you and your husband show is deeply inspiring. I also know that fear all too well. The worry that new treatments might not bring the relief we hope for. And those emergency room visits, oh, how I relate to those! But through it all, we persevere, because what other choice is there?
Thank you for believing in me, Ellen. It means so much to have support from someone who truly understands. It gives me strength on those hard-to-get-out-of-bed days, reminding me that I'm not alone in this. Let's keep pushing through, celebrating the small victories, and supporting each other. Here’s to being our own best advocates and finding those precious moments of relief.
Softhugs
Daniela, I am so sorry you are going through this! My prayers are with you that you find relief for this pain and the trip goes well. I understand and relate to how hard it is to deal with the pain. My flares with my condition cause immense pain where at my worst, it hurts to breathe and move at all. But your positivity and how you look at life and the goodness and beauty around you, helps me to keep going. It is so so easy to just give up and do nothing. But because of your resilience and positive attitude toward life, it keeps me from giving up. I also love this time of year! Everything is in bloom here too and the beauty surrounding me helps to motivate me. Thank you so much for sharing your struggles and I wish you all the best and look forward to your next video! Take care! Sending Hugs!!💝❤ Geri
It’s always so good to hear from you, and I truly appreciate your kind words and prayers. I know you’ve your own struggles with pain flares, and it means a lot that we can support each other like this. Your message really touched me, knowing that my positivity can help someone else keep going makes all the challenges a bit more bearable.
I’m glad to hear you're enjoying the beauty of this season too. There’s something so special about everything in bloom, isn’t there? It can really lift our spirits. Thank you for being here and for being part of this journey with me. Your encouragement and connection mean the world. I’m sending you big hugs back and can't wait to share more with you soon!
Take care and keep finding those beautiful moments,
@@tt_looking_glass You truly are an amazing and beautiful lady! I look forward to more videos! You are so very kind which is what this world needs more of today!!
@@tt_looking_glass ♥
Thank you so much for your kind words! 😊 It means a lot to hear that you're looking forward to more videos.I totally agree, the world could definitely use more kindness these days. Thanks for being a part of our community. 💖🌟
I want to say that I truly appreciate your videos.Too.Have multiple chronic.Illnesses ... Watching your videos is so calmand it's like you're in my head LO.L softhugs from one chronic sister to another god bless you
Thank you so much for your kind words. I'm glad my videos bring you some comfort and understanding. It's important to feel connected, especially when dealing with multiple chronic illnesses. Sending you soft hugs and strength from one chronic sister to another. God bless you too. 💜
Daniella, I wish you well and I hope you get answers in Brazil. ☀️🌻
Thank you so much. I will try share as much as I can with you guys about this journey.
I relate. I got fibro at 20, when I got the most severe depression imaginable. Fibro got worse at 24. Am now 31. Have tried almost everything and spent thousands and thousands of euros of money I dont have. My life is ruined. Take care hon. ❤️
Oh Ella, I’m so sorry to hear about the tough journey you've been on with fibro and depression. It sounds incredibly challenging, and I can only imagine the frustration and exhaustion you must feel after trying so many different treatments without the relief you deserve. It’s especially hard when the financial strain adds another layer of stress. Thank you for sharing your story with us. You're not alone in this struggle. We're all here supporting each other, and I'm here whenever you need to talk or just vent.
Take care, and keep holding on. You’re stronger than you know. ❤️
My heart is with you ❤. Good luck, safe travels, and I pray for a good trip, despite all that you have going on right now ❤!!! Flared up as well. Hang in there, friend.
Thank you so much Amanda. What’s with all the flares lately?? I hope yours doesn’t last too long.
❤
thank you. ♥️
I’m praying you can get your mri and treatment 🙏🏼💕 I pray for relief and validation for all of us. It seems like we are going back in time in regards to medicine. Doctors still treating women as if we are “hysterical” when we tell them of our pain. I understand your medical PTSD- I have it too.
Hey Jennifer, thank you so much for your kind words and prayers. It really means the world to me. You're so right about the struggles we face with being taken seriously in medical settings. It’s incredibly frustrating to feel like you’re not being heard or understood. I’m with you in the hope for better days, where our symptoms are met with validation and empathy rather than skepticism. Your support and understanding really help make this journey feel less lonely. Your encouragement helps me more than you may realize. Keep in touch, and take care of yourself too. 🌷
Best of luck and good wishes for a uncomplicated visit. I’ll be thinking of ya mate xxx
Hey Cathie, thanks so much for the good vibes! It means a lot to know you’re thinking of me, you are always cheering me up. Fingers crossed for a smooth visit. Can’t wait to update you all about how it goes. Take care.
Hope you feel better ! I am in a lot of pain also I send you hugs and prayers!
Thanks so much for the hugs and prayers! It’s always comforting to know that we're not alone in this, even though I'm sorry to hear you’re also dealing with a lot of pain. I hope you find some relief soon. Remember, we're in this together, and your support means a lot to me. Sending you lots of strength and gentle hugs right back. Hang in there, and let’s keep encouraging each other!
Take care ♥️
Great content, thank you for sharing your journey with us, sending prayers your way that everything will go smooth with your trip & seeing your doctor ❤
Thanks so much for the encouragement and prayers! It really boosts my spirits to know you're enjoying the content and rooting for me. Sharing this journey with you all makes the tough parts a bit easier to handle. Here’s hoping everything goes smoothly indeed. Your support means the world. ❤️
Daniela, I am new to your vlogs but I can so relate to your anxiety about traveling. My.major concern would be about sleeping in different beds. I can only sleep in my own. Otherwise it throws me into a horrible flair. I also have IBS so I panic about what I will eat when I am traveling. So many things to worry about. Will be thinking about you. Have a safe trip!
Welcome to the vlog! It's really good to have you here, and I appreciate you opening up about your own travel concerns. I totally understand how tough it can be with different beds and the worry about meals, especially with IBS in the mix. On my last travels, I went to Thailand and had a pretty bad case of constipation and then diarrhea. the second happened when I was on a 6-hour speed boat without a bathroom. It was not pretty. I was sweating buckets! It's a lot to juggle, isn't it? Thanks so much for your thoughts, it's comforting to know others are out there who get what it's like. Let’s both try to take things one step at a time. Have any travel tips that work for you? I’d love to hear about them!
Agreed Daniela! I’m having a very hard time with my pain and having a good quality of life 😢
I’m really sorry to hear you’re going through such a tough time with your pain. It can be so hard to maintain quality of life when you're feeling like that. I’m right there with you, and I totally understand how exhausting and frustrating it is. Please know you’re not alone in this. If you ever need to talk or share tips that might have helped you a bit, I’m here. Hang in there, and take it one day at a time. Sending you lots of strength and support. ❤️
@@tt_looking_glass thank you SO much ❤️
You are very welcome. ♥️
I hope you feel better soon. ❤️
Thank you so much. ❤️
Praying for you here on the southern shore of Lake Ontario. I hope you can solve your problem with keeping your migraine medication refrigerated while you travel, and I hope your trip will help you to get the care you deserve when back home. Are you familiar with Yeti Brand products? They make insulated containers in many different sizes, some of which are advertised to remain cold for days. I’m not familiar with their entire line, but they might have just what you need to keep your medication fresh.
I know what you mean about things piling up and stressing you out. On top of my fibromyalgia and AS, lately I’ve been dealing with an outer torn meniscus (mostly my fault for trying to rush to get the laundry done) and my wife and I have been down for a week with bad colds. I’ve not left my house in a week and I’ve missed a couple of social events I was looking forward to. Yesterday I was feeling well enough to get some work done around the house, but cutting the grass was going to be too much for me. Incredibly, my wonderful neighbors were having trouble with their lawnmower and I let them borrow mine. And they, God bless them, cut my grass and trimmed the hedge too. So it’s good to see that the Lord and my neighbors are still there to help.
I think it’s great that you can grow your own herb garden. It’s always nice when you can see the work of your own hands come to life. I don’t have a green thumb, but last fall when I was cutting my lawn I noticed that the Lord had planted two little basswood trees in my backyard. They were so tiny that I almost ran over them with the mower. But I circled them with bricks and they survived the winter. Now I hope I can dig them up and replant them in another part of my yard. I have two walnut trees also, and God planted them in my yard and all I had to do was protect them and enjoy watching them grow over time. The only thing I ever planted that thrived was a lilac plant that fills our house with its lovely perfume for a while each spring when the flowers bloom. That was thirty years ago, and the plant still blossoms every spring!
Sorry about the long comment, but your latest video was bittersweet for me. I know a lot about how you are feeling and I pray that you are strong and can solve the problems facing you on your upcoming trip. Who knows? Help may be coming from an unforeseen source!
Thank you so much for your prayers and for sharing such a thoughtful message. It really helps to connect with someone who understands the complexities of managing chronic conditions while trying to live life as fully as possible. Your suggestion about the Yeti brand insulated containers is a fantastic idea! I have several of their products from coolers to mugs. They are fantastic but usually a bit heavy.I'll definitely look into their products to see if they have anything on the lighter side.. It's these practical tips that can make a big difference, so I truly appreciate it.
I'm sorry to hear about your torn meniscus and the tough week you and your wife have had with colds, that sounds really challenging. But what a wonderful story about your neighbors stepping in to help with the yard! It's heartwarming to hear about such kindness and community support. It really shows how small acts of kindness can uplift us when we’re feeling overwhelmed.
Your growing trees story is so inspiring too! It's amazing how nature can provide us with such joy and satisfaction, seeing things grow and flourish under our care, or even just spring up on their own!
Thank you again for taking the time to write and for your uplifting words. I'm sending you and your wife lots of good vibes for a quick recovery, and here’s to hoping that my trip will be as productive as we hope. Take care and keep cherishing those beautiful moments around you. You never know where help might come from next!
I hear you. Sou brasileira e moro no Canadá em Ontário e o sistema de saúde aqui tem me deixado maluca tb. Lidando com dor há quase 3 anos e a demora aqui me enlouquece
Realmente, os desafios do sistema de saúde é incrivelmente frustrante, ainda mais quando se está lidando com dor constante há tanto tempo. Espero sinceramente que você encontre soluções e alívio em breve. Você mencionou que está em Ontário; em que cidade você mora? Tambem estou em Ontario. Mantenha a força, e obrigada por compartilhar sua experiência. Estamos juntos nessa!
I wish I could bend down and sit on the floor. I havent been able to do this in years😊 It is so difficult to accept this pain filled life that beings so much hardship . Nobody understands the sheer joy I have when I have one of my normal days and this brings so much hope. 😊
Amanda, it's truly heartbreaking to hear how much you've had to adjust your life due to pain. Not being able to do simple things like sitting on the floor can feel so limiting, and I can only imagine how much you miss those ordinary freedoms.
It's touching, though, to hear about the joy you find in your good days. Those moments are precious, aren't they? They remind us that there's still so much to hold onto, even in the midst of our struggles. Keep cherishing those brighter days and let them fuel your hope. Here's to more good days ahead, filled with joy and less pain. 😊
@@tt_looking_glass
It is so sweet of you to comment, I really feel special that you have acknowledged my existence! I lead a very isolated life, however I have found you now and will continue watching your podcasts. They are so relatable. I keep a bullet journal and I keep a record of my good days so that I can be joyful and happy knowing I am due for a good day at some point 🤣🤣
I see you Amanda! it’s wonderful to hear that you feel seen and connected here! Keeping a bullet journal is such a smart thing to do, it not only helps you track what might be affecting you, but it also offers a reminder that there are good days to look forward to. It's tough to remember that during a flare, but it’s so important. Keep tuning in. We are here cheering you on! 🤗💕
I wish you the best for your travels and your doctor's appointment. When you have the time, can you please do a video on how we can explain people that we can't work - at least not in the traditional sense. I worked 8-5 for about 14 years, with a break in between every 3 years because I would get burnt out (didn't know that it was burn out, I thought I was weak and lazy) So work for me was 'save as much as you can because soon you won't have an income. It was a horrible way to live. 10 years ago, after 2 surgeries, office bullying + ptsd, I no longer can work. But people I meet don't seem to understand pain. I look fine, right? I don't want to go down the list of my diagnosis, accidents, failed surgeries etc. So what's the best way to change the subject basically!? (because it is a painful subject) Good luck with everything!
Thank you for the well wishes and for bringing up such a vital topic. You've been through a lot, and navigating conversations about not working in the traditional sense is indeed tough, especially when your struggles aren't visible to others. I totally get why it’s a painful subject. I’ll definitely consider making a video on how we can gracefully shift these conversations without having to delve into our personal medical histories.
In the meantime, perhaps you could say something general like, “I’ve had to make some changes for health reasons,” and steer the conversation towards mutual interests or inquiries about the other person. People often enjoy talking about themselves, which can help divert the discussion away from your personal health.
If you feel the person is genuinely interested and concerned you could refer them to some of my educational videos and it may help them understand how difficult it is for so many people who live with chronic illness.
Thanks again for your suggestion and your support. Hang in there, and remember, you’re not alone in this. Good luck to you too with everything!
@@tt_looking_glass Great tips, thank you soo much! And thank you for your kindness, it means truly a lot to us all here on UA-cam. 🥰
You're very welcome! I'm so glad you found the tips helpful. It's the connections and support we share that make this community so special. Take care and stay tuned for more! 🥰💖
I understand, I saw my rheumatologist in March and I dont see her until 10 December. So I must suffer until then it is ridiculous. It is not accepted to give biologics to fibro patients here in UK, so no hope for me. 😊
Amanda, that is incredibly frustrating to have such a long wait between appointments, especially when you’re in need of relief now. I know this feeling very well.
I wish there were more immediate solutions to offer. You're doing an incredible job handling such a difficult situation. Hang in there, and remember, this community is here for you. We're all rooting for you and hoping for some relief to come your way soon. Stay strong, and don’t hesitate to reach out whenever you need support or just to talk. 😊
Advocate for yourself. Minha amiga faleceu devido nunca derem atenção para ao que ela dizia aqui no Canadá e infelizmente ela faleceu 😔
É uma tristeza enorme saber que ela não foi ouvida adequadamente pelos medicos. Seu conselho sobre a autoadvocacia é essencial. É um lembrete crucial de que devemos persistir em fazer com que nossas vozes sejam ouvidas, especialmente quando se trata de nossa saúde. Obrigada por compartilhar essa história; ela reforça a importância de continuarmos lutando por cuidados de saúde. Sinto muito pela sua perda.
You could look into the work of Nicole Sachs and Dr. Howard Schubiner🙏🏻
Thanks for the recommendation! I'll definitely look into Nicole Sachs and Dr. Howard Schubiner's work. It's always great to have more resources. I appreciate you taking the time to share this with me. 🙏🏻
Can you do a video how all of this pain started?
Absolutely, I think sharing the story of how my pain and chronic illness journey began could really help others who are going through similar experiences. I've been dealing with chronic illness for over 30 years now, and the diagnoses have indeed piled up over time. It's hard to pinpoint exactly when everything started, but I'll do my best to condense my journey into an abbreviated video. Thank you for the suggestion and for your interest. It means a lot to know that sharing my story could make a difference. Stay tuned!
how did they diagnose the AS without an MRI? You might have told me but I can't remember.
Thanks for tuning in and for your question! It's good to see you engaging and keeping up with everything. Regarding the AS diagnosis, they initially went off of my symptoms and blood tests that showed markers associated with inflammation. MRIs can definitely help clarify things further, so it’s on the list. It can be a lot to keep track of, so no worries about not remembering everything! If you have any more questions or just want to chat, I'm here.
I am also suffering thats why i
I'm sorry you are also in pain. It seams the rest of your message got cut off though.
How did you find a doctor in Brazil?
It's kind of an interesting story, actually! A friend of mine, who I hadn't spoken to in years, saw one of my UA-cam videos where I was talking about how long everything was taking here in Canada. It turns out his best friend from high school is the head of rheumatology in Rio de Janeiro. He got in touch with me, and from there, I contacted the doctor. We had a virtual appointment first, and now I'm here in person in Brazil to see this doctor. It’s amazing how things work out sometimes, isn’t it?
@@tt_looking_glass if you can share more about the doctor later, it would be so nice. I live in Rio Grande do Norte, but honestly i'm at the point to fly anywhere in the country to find some answers...
@x3danimatos I will be sharing a vlog of this trip and my appointments in a vlog next week and then when I get back to Canada I can work on a video explaining in more details the whole story from the very beginning.