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Excited to meet you!
Hi, my name is Heather, not only new to the forums, but new to wegeners. As I have read and lived.... Our journeys are so long and growing.
My story (short version), I was a very successful business owner 10 years ago. I wore heels to work every day and one day I said, my knee hurts....
I don't even know how to tell my story
soon after I was diagnosed with lupus sle. Put on prednisone and pain pills. Fast forward 10 years and I haven't worked since, gained 150 lbs, list friends, got divorced, lost my home, and I was still in pain, up to 23 medications, and being told I was an anomaly. Nothing made me feel better. I had completely forgotten what normal or good was. I had resolved myself to that life, kept journals for my kids to read because I just wanted to die.
Im not even sure or dont remember what prompted a change, my dr asked if I had seen my RA dr recently, I said no because not only did my insurance change, but the one I went to was a quack. She said I needed an RA dr. Being on disability, options are slim. She called a dr friend( I found out later) and begged for her to take me on, and she did. I had to drive 30 miles away, but after 10 years, what is 30 miles?
I saw her soon after and after a review of symptoms she mentions that she wants to test me for wegeners. I had no idea what that was, I didn't even know the meaning of the words she used to explain it. Vasculitis? Never heard of it.
She is part of a dr specialty group. The doctors actually know and communicate with each other!!!! Omg never heard of that! I didn't know at that point I was the poster child for wegeners. My kidneys were functioning below 50%, in 1 year I had pneumonia 4 times, pertussis, asthma and I was hoarse for over 8 months. I told her I could do party tricks, I had no cartilage left inside my nose, it was all a gaping hole.
She upped my prednisone to 60mg. I thought that made me feel better. But it didn't relieve my symptoms. After going to all my referral dr appointments she called me 3 times in 1 day. I emailed her back, apologizing for missing an appointment. She called right away and said I do have wegeners and I need to get to 40mg a day of prednisone and 15mg of methotrexate.
I cried and cried, the more I read on the internet the worse I felt. I already had lupus and it seemed to never go into remission. I cried myself to sleep that night.
The next day, I felt better, ready to fight it.
Can you believe this is the short version????
anyway, after 2 weeks of mtx, I had the strangest and most unfamiliar side effect ever!
BOREDOM
i had always felt so bad that after 10 years of sitting in my chair I never got bored. I had a glimpse of what it meant to sit in a chair all day and feel ok.
i had enough clarity of thought to realize that before I was standing at a brick wall. Even when I thought I felt better, it was nowhere close to good. I just kept putting on a show, I always knew that I hurt, it was so hard, and I was failing, but I thought that was as good as it was going to get.
lucky me, I have every symptom of prednisone use known to man, I now sport moon face and a buffalo hump. But you know what, I see the light. Mtx has been a blessing. People are saying I am more animated, and the old "Heather". Mind you, I have a 2 year treatment plan and I'm on week 3, but I feel optimistic. Something I lost 10 years ago.
wow, to write this out is very emotional... Didn't expect that lol.
Reading all your posts with stories, support and care has made me feel so good, even just as a lurker in the forum.
That's my short story, I am happy to meet everyone, and look forward to chatting more
heather
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