Stormi
03-05-2013, 08:13 AM
Hi there! I wanted to introduce myself to the forum.
My name is Stormi...yes, it's my real name ;) Was torture as a kid, but actually love it now. I am 36 years old and have always been a pretty healthy person until the past couple years.
I was just diagnosed with Weg's 2 weeks ago and have been spending a lot of time online reading about it. Here is a quick recap of my story leading to the diagnosis...
On June 9th of 2011 I woke up with shoulder pain for no reason at all. It was first diagnosed as a "strain" - maybe I slept on it wrong...dr's sent me home with a sling and some pain killers. Everything went down hill from there. For the next year I was in extreme joint pain that seemed to travel all over my body and make no sense at all. Shoulders, knees, fingers, elbows - everywhere. I am a pretty healthy girl - active & never really experienced any body pains like this in my life. After exhaustive tests with doctors, we ruled out that I dont have any life threatening diseases (they tested me for everything!) the Dr's finally sent me to a rheumatologist who declared that I have RA and put me on Humira. That didnt help at all.
During the past 6 months, I started to experience other symptoms...weird red dots on my feet, swelling, coughing up blood (a lot of blood) and nausea. I have always had allergies but my sinuses were BAD and now I couldn't breathe well. All of this is happening while I travel each month for a week for work all over the US. So, my health was starting to affect my ability to travel for work -- which is not OK.
So, two weeks ago I was in Miami on business and thought what I had was an awful cold. I was hacking, coughing up blood - sick as a dog. Then, towards the end of the Miami leg of my trip my joints started to flare up...and I still had to travel to Los Angeles for work for another 5 days. Halfway through my LA trip I threw in the towel and hopped a red eye back to Raleigh and went straight to the emergency room where they admitted me immediately. Within a couple hours of being in the hospital the diagnosis was made: Wegeners.
They did a lung biopsy on me while there - and I had the pleasure of getting a chest tube (can you say being stabbed in the lungs and the recovery on this is a pain in the ARSE!) They also checked my kidneys, which came back clear...thanks goodness!
I was in the hospital for 8 days. During this time, I was given prednisone & my first round of Retuximab. I am home now and going to have my first round of out patient Retuximab this week. They want me to do a total of 4 rounds of the chemo AND I am on 40 mg of prednisone right now, along with a bunch of other vitamins and some pain meds.
That's my story so far....scared & nervous about this whole thing. I dont know what to expect. From reading everyone's post and experiences, it seems like Weg's has come a long way in terms of remission and dealing with it. I feel fortunate that I got to the hospital when I did and hope that I caught it in time to make a full remission & lead a normal life. BUt is that possible with Wegs? Can one live a normal life now?
I think the Retuximab is taking its toll on me also. VERY TIRED & just feeling beat down.
I hope that by getting on this forum I can learn from each of you...but also have a place to make some friends to share this journey with. I am definitely feeling scared, sad and overwhelmed at times...so extending an open invite to anyone to reach out and give some love...I'm feeling more human than ever these days.
Thanks for taking the time to read this...hope its not too much info but it felt pretty good to write it all out. ha!
Well wishes to each of you,
Stormi
My name is Stormi...yes, it's my real name ;) Was torture as a kid, but actually love it now. I am 36 years old and have always been a pretty healthy person until the past couple years.
I was just diagnosed with Weg's 2 weeks ago and have been spending a lot of time online reading about it. Here is a quick recap of my story leading to the diagnosis...
On June 9th of 2011 I woke up with shoulder pain for no reason at all. It was first diagnosed as a "strain" - maybe I slept on it wrong...dr's sent me home with a sling and some pain killers. Everything went down hill from there. For the next year I was in extreme joint pain that seemed to travel all over my body and make no sense at all. Shoulders, knees, fingers, elbows - everywhere. I am a pretty healthy girl - active & never really experienced any body pains like this in my life. After exhaustive tests with doctors, we ruled out that I dont have any life threatening diseases (they tested me for everything!) the Dr's finally sent me to a rheumatologist who declared that I have RA and put me on Humira. That didnt help at all.
During the past 6 months, I started to experience other symptoms...weird red dots on my feet, swelling, coughing up blood (a lot of blood) and nausea. I have always had allergies but my sinuses were BAD and now I couldn't breathe well. All of this is happening while I travel each month for a week for work all over the US. So, my health was starting to affect my ability to travel for work -- which is not OK.
So, two weeks ago I was in Miami on business and thought what I had was an awful cold. I was hacking, coughing up blood - sick as a dog. Then, towards the end of the Miami leg of my trip my joints started to flare up...and I still had to travel to Los Angeles for work for another 5 days. Halfway through my LA trip I threw in the towel and hopped a red eye back to Raleigh and went straight to the emergency room where they admitted me immediately. Within a couple hours of being in the hospital the diagnosis was made: Wegeners.
They did a lung biopsy on me while there - and I had the pleasure of getting a chest tube (can you say being stabbed in the lungs and the recovery on this is a pain in the ARSE!) They also checked my kidneys, which came back clear...thanks goodness!
I was in the hospital for 8 days. During this time, I was given prednisone & my first round of Retuximab. I am home now and going to have my first round of out patient Retuximab this week. They want me to do a total of 4 rounds of the chemo AND I am on 40 mg of prednisone right now, along with a bunch of other vitamins and some pain meds.
That's my story so far....scared & nervous about this whole thing. I dont know what to expect. From reading everyone's post and experiences, it seems like Weg's has come a long way in terms of remission and dealing with it. I feel fortunate that I got to the hospital when I did and hope that I caught it in time to make a full remission & lead a normal life. BUt is that possible with Wegs? Can one live a normal life now?
I think the Retuximab is taking its toll on me also. VERY TIRED & just feeling beat down.
I hope that by getting on this forum I can learn from each of you...but also have a place to make some friends to share this journey with. I am definitely feeling scared, sad and overwhelmed at times...so extending an open invite to anyone to reach out and give some love...I'm feeling more human than ever these days.
Thanks for taking the time to read this...hope its not too much info but it felt pretty good to write it all out. ha!
Well wishes to each of you,
Stormi