My Journey with Wegener’s Granulomatosis- 3rd Anniversary
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- čas přidán 5. 09. 2024
- My Journey with Wegener’s Granulomatosis- 3rd Anniversary. I was diagnosed on 11/27/18, I thought my life was over. I was thankfully so wrong! I can definitely tell that It is far from over. Different yes. Over, No!
Wegener’s Granulomatosis support group
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As a fellow traveler on this path I appreciate your videos. Its been 2 years for me since diagnosed. The ups and downs are what really gets to me. One day it feels almost OK and being on the mend and the very next day BAM!. everything goes out the window. I read about fellow travelers that have been on this journey for many years and really admire their strength and hope to acquire some of that resilience. Good luck to you and be well.
Hello! I hate you are on this journey, but I’m glad you found me. It’s definitely the ups and downs. I really don’t know day to day how I’ll feel. It’s really the exhaustion that’s the worst, I’m down to 5mg of prednisone a day finally and it’s much better. It’s still far from before, but it beats the alternative I say! ❤️
Yay, so glad to see your video. It's been a year for me and my Wegener's and Goodpasture's diagnosis. Your hair looks beautiful. (mine is slowly coming back)
Thank you for the kind words, losing my hair was so difficult for me. It’s still much thinner than it was, but I learned how to hide the bald areas. 🤪 I would constantly tell myself I’d rather be bald than dead! It took about 2 1/2 years to get to this point. I’m glad you found me and I hope I can help. I have a whole playlist going back to about a 1 1/2 weeks after my diagnosis. ❤️
I’ve been formally diagnosed with GPA since Dec 2019, but have had symptoms since 2016. I had to quit working as a nurse since then due to the shortness of breath, fatigue and pain. I’m on oxygen full time which sucks really bad, but I’m striving to get more independent with a portable O2 concentrator. I want to walk on the beach again, go fishing, just doing my normal fun activities. It’s easy to have a pity party, I had a period around a month ago that I was super depressed. But I’m with you that God has a plan for me, even if I’m angry about it!
I get my Rituxan treatment next Monday so I feel ya! I alway hate it when it gets close to the next treatment time. I can feel the waining effects so it’s miserable some days.
It’s a nasty disease! I was on 02 earlier this year full time for 3 months. I had 3 large bilateral pulmonary embolisms in April. I understand the pain, I hurt everyday too. It’s sad, weird that you get used to the pain. I understand the frustration of not being able to do simple task, I have little energy. Going to the grocery store can knock me out for a day or 2. Hang in there! ❤️
Absolutely fantastic video on Wegeners. It’s the raw truth told in a very good way. I wish you all the best for the future. The only criticism l have is the music playing is so annoying and distracting when l am trying so hard to listen to your important words. Honestly no music would have been better and easier.
Thank you for the kind words & I totally understand. I try to find soft background music, but I’ll do my next one without. ❤️
Been on this road since 2014. I've never met anyone else with this disease. Rest up when you need to. This disease sucks and it's hard for people to understand our little quirks 😉- hang in there
Oh I’m so sorry you’ve been alone on this journey so long. If you are on FB please join my tribe of Weggie Warriors at the Wegener’s Granumaltosis Support Group (the cover picture is a quote from Francis of Assisi) it’s a private group.