Hi everyone,

I wanted to give you a quick update. My shitty year keeps on giving me more to battle. When I was on vacation my house got burglarized and last week someone rear ended my husband and me while we were standing at a red light. It pushed us in the car in front of us. But you know what? We are fine and it is just stuff. Everything will be covered by the insurance and we now have a security system. Over the past weeks I learned to give any “what if” and bad thoughts a one way ticket back to where they came from. My body feels fine and most of the time my mind too. I have positive stress at work and besides the one day I got my echocardiogram and a panic attack, I only missed work for my infusions. I had my last infusion the Monday after Thanksgiving and haven’t noticed any side effects yet. My blood and urin tests so far came back normal. Since Tuesday I am now on 50mg Imuran as maintenance medication. We will see next week how my body reacts to it, but so far no weird side effects. After testing we will go to 100mg if everything is fine. I am now down to 30mg prednisone and we will taper it down slowly to hopefully 0mg, but everything with time. I am also still taking the Mepron. Good news is that I am finally not vitamin D deficient anymore. It was really important to my Rheumy (and me) to get me out of it. So far the only thing that Wegener’s took from me is a little bit of hearing, but I can still manage without a hearing aid.

I was following some people on Instagram who have Wegener’s, but I unfollowed most of them again as it I don’t want to be reminded all the time. I only have two in my list, who actually also do some different content .

I wanted to thank you all so much for your kind replies. I also got several private messages from people who are also doing fine with the disease. I wish you all good health, happy holidays and sooner or later they’re will be a cure for all of us! I’ll gonna keep you posted from time to time, but as I said, I don’t want to be reminded all the time. I take my meds, do my regular testing and keep on living my live.