Thehealingblonde
12-26-2018, 09:33 AM
Hi everyone! Merry Christmas :)
I joined this forum a few months ago but I have been here quietly reading your posts and replies. First of all, I admire your bravery, transparency, and such willingness to help and support other Weggies! It can be such a lonely journey but together we will continue to fight on! You are all amazing people for being here.
I was diagnosed Aug 2018 (at 39 years old) by my ENT after having strange symptoms for only one month - severe sinus congestion, hearing loss, & night sweats. (Prior to this I was very healthy with no issues and very active.) I am forever grateful for such an early diagnosis (confirmed with ANCA test) and for my ENT who is experienced in recognizing Wegeners symptoms. Thankfully, I did not have any manifestations in my lung or kidney.
I was put on prednisone with a taper and scheduled for 4 infusions of rituxan which I completed end of October. I am now in remission and off all medications! (I chose to decline daily Bactrim) I am monitored monthly by my rheumatologist at Mayo Clinic and have tentatively scheduled my next Rx infusion for March. Although, if my testing is still looking this good and I feel this good, he says we will hold off. Im hoping to make it well past the 6 month mark and I am very optimistic about my future :)
Since being diagnosed I have made lots of “life edits”. For starters, I follow a strict anti inflammatory diet - getting rid of all processed foods & sugar (which is unhealthy disease or not), no alcohol/caffeine, lots of fruits/vegetables, bone broth and high quality meats. I started meditating, doing yoga, and finding ways to relieve stress. I have a very supportive husband and family and lots of wonderful, positive friends. I am still active and enjoy all the things I did pre-disease - hiking, skiing, working out. I believe mindset is so powerful. I also believe in taking an active role in your own health and being honest with yourself about the areas that need improvement. For me, this has been most helpful in making sure my treatments work and making sure I feel my best, both mentally and physically. As of today, I am healthier than ever before! (Despite some lingering tinnitus that comes and goes in my left ear - no biggie)
Today, on Christmas Day, I am so full of gratitude for so many reasons. I am thankful for the amazing doctors and medical advancements that help people manage these life altering diseases. I am thankful for this planet that nourishes me daily, my supportive friends and family, my four dogs, and YOU! Thank you for taking a moment to read my story. I look forward to having a more active role on this forum and offering my support when I can.
Much love to you all!
Xoxoxo
Sent from my iPhone using Tapatalk
I joined this forum a few months ago but I have been here quietly reading your posts and replies. First of all, I admire your bravery, transparency, and such willingness to help and support other Weggies! It can be such a lonely journey but together we will continue to fight on! You are all amazing people for being here.
I was diagnosed Aug 2018 (at 39 years old) by my ENT after having strange symptoms for only one month - severe sinus congestion, hearing loss, & night sweats. (Prior to this I was very healthy with no issues and very active.) I am forever grateful for such an early diagnosis (confirmed with ANCA test) and for my ENT who is experienced in recognizing Wegeners symptoms. Thankfully, I did not have any manifestations in my lung or kidney.
I was put on prednisone with a taper and scheduled for 4 infusions of rituxan which I completed end of October. I am now in remission and off all medications! (I chose to decline daily Bactrim) I am monitored monthly by my rheumatologist at Mayo Clinic and have tentatively scheduled my next Rx infusion for March. Although, if my testing is still looking this good and I feel this good, he says we will hold off. Im hoping to make it well past the 6 month mark and I am very optimistic about my future :)
Since being diagnosed I have made lots of “life edits”. For starters, I follow a strict anti inflammatory diet - getting rid of all processed foods & sugar (which is unhealthy disease or not), no alcohol/caffeine, lots of fruits/vegetables, bone broth and high quality meats. I started meditating, doing yoga, and finding ways to relieve stress. I have a very supportive husband and family and lots of wonderful, positive friends. I am still active and enjoy all the things I did pre-disease - hiking, skiing, working out. I believe mindset is so powerful. I also believe in taking an active role in your own health and being honest with yourself about the areas that need improvement. For me, this has been most helpful in making sure my treatments work and making sure I feel my best, both mentally and physically. As of today, I am healthier than ever before! (Despite some lingering tinnitus that comes and goes in my left ear - no biggie)
Today, on Christmas Day, I am so full of gratitude for so many reasons. I am thankful for the amazing doctors and medical advancements that help people manage these life altering diseases. I am thankful for this planet that nourishes me daily, my supportive friends and family, my four dogs, and YOU! Thank you for taking a moment to read my story. I look forward to having a more active role on this forum and offering my support when I can.
Much love to you all!
Xoxoxo
Sent from my iPhone using Tapatalk