SpaceflightAddict Checking in: Two years with Wegener's.

[SpaceflightAddict]

Good Afternoon Everyone!

I apologize for my lack of updates the past year and a half.

I know that I have missed some events on the board, but I have been checking in on everyone every once in a while. I gotta make sure my Weg's family is hanging in there

Alysia, if you are reading this, I want you to know what a huge impact Phil had on my life in the short time I knew him. He will forever in my heart be the man that saved me from a lifetime of sinus trouble, and that is one of the greatest gifts a Weggie can receive. I am sure that myself and many others here will promote his sinus health rituals for years to come, and I hope to one day be able to help someone else as much as Phil helped me. I never got the chance to thank him for what he gave to me, but I can still thank you for being there with him in his time of need.

Health wise, I am doing excellent.

There has not been a trace of disease activity in over a year; no crusting, no bleeding, and no pain. Just the occasional sore throat from my disfigured sinuses dripping down my throat.

I tapered completely off of prednisone around six months ago without issue, and stopped the Methotrexate and Bactrim 3 months ago. I am now medication free.

I got the first blood work back after stopping all medications a couple of weeks ago, and they were totally normal, no elevated inflammation markers anywhere.

I have even managed to lose ALL of my prednisone chub, and then some. When I was diagnosed, I weighed 185 pounds; at my peak a year and a half ago I was at 245; today, I am down to 175, and have been for a while now.

Life has returned to normal for me... I may even be busier than I was before diagnosis. I think I may even be healthier than I was before Wegener's. I have not smoked a cigarette in over two years now, and have not drank for almost as long. Before Wegener's I could walk up mountains without getting winded, and now I can run right up the side of them.

I am a happier and healthier person than I was before this disease came into my life..

I have a message for any young person that comes across this: Wegener's is not a condemnation of your life. I was diagnosed with this disease at the age of 27, and in very bad shape. I was very scared, and very uncertain of my future. I had a choice to make. I could either let the Wegener's control and guide my life, or I could take it as a challenge; something to be overcome and defeated.

I chose to take on this challenge. The battle has gone well so far, but I remain aware that Wegener's is an insidious enemy, and if given the opportunity will attack while your back is turned.

[Pete]

Congrats on getting to weggie nirvana!! Hope it continues. Be vigilant!!

[MikeG-2012]

Hey, congratulations! (I'm jealous!) (-8

[annekat]

Hey, it's so awesome to hear from you with all this good news! I hope all the new people will take heart at your message, and maybe some of us WG veterans, too. Being in MD, I'm wondering if you go to John's Hopkins, but either way, it sounds like you have excellent docs and got some significant help from Dr. Phil, too. Congrats on getting to this point, med free and with perfect blood work, in only two years, and on showing Wegs who is in control. We can't all do this, but you've shown us that it can be done. I know you will keep yourself monitored on a regular basis in case the Wegs dog should come whining at your door again. Keep us posted!

[mishb]

Andy this is such awesome news. Congratulations.

Here's a little happy dance for you

[woz]

Excellent news, its always good to here stories like this, just keep a check on your bloodwork.

all the best for the rest of your life.

Regards Woz.....

[Alysia]

Thank you from the bottom of my heart for your kind words about my beautiful Phil. It means more then I can express. Your thread about the boogers is one of the best.
I am so glad that you are doing so well. It is great. Keep it and come to visit from time to time. I like your fighting spirit. Take care.

[SpaceflightAddict]

Thank you all so much for your congratulations!

Hey, it's so awesome to hear from you with all this good news! I hope all the new people will take heart at your message, and maybe some of us WG veterans, too. Being in MD, I'm wondering if you go to John's Hopkins, but either way, it sounds like you have excellent docs and got some significant help from Dr. Phil, too. Congrats on getting to this point, med free and with perfect blood work, in only two years, and on showing Wegs who is in control. We can't all do this, but you've shown us that it can be done. I know you will keep yourself monitored on a regular basis in case the Wegs dog should come whining at your door again. Keep us posted!

Hi Anne!

I am still going to Johns Hopkins, my doctors there are wonderful, and I recommend it without hesitation.

Even though I am in drug free remission, I am still keeping all of my regular appointments and labwork for the foreseeable future. If Mr. Wegener tries to poke his head in again, I plan to be ready

[Birdie]

Even though I am in drug free remission, I am still keeping all of my regular appointments and labwork for the foreseeable future. If Mr. Wegener tries to poke his head in again, I plan to be ready

Got any ideas better than monthly blood and urine testing? That's my plan. Seems to be the most reliable method of watching for the long dead Nazi doctor.

Like annual mamogram for breast cancer survivors. My wife stopped doing it a year or so before the return, and failed to spot it in time.

[SpaceflightAddict]

Got any ideas better than monthly blood and urine testing?

Not really. I am only doing labwork once every three months now. I am pretty in tune with my body now, so if I feel something is not right, I will be letting the doctor know right away.