Hello again everyone,
I come to you on Day 10 of feeling like I was run over by a truck. I've been feeling off for awhile. I've had a sore throat for over a month now but ... on April 25th, things felt very bad. I had to call in sick for my Sunday April 26th shift because I felt so awful. I drug myself to work on the 27th because there was a stress debriefing for a critical incident I was a part of that I really wanted to go to. I lasted hour at work before having to go home. I was coughing non stop, my chest and back hurt every time I coughed and hurt afterwards. Called the Kaiser advice line and got a phone appointment with a really cool doctor who actually seemed to know Weg's. She told me to go pick up some antibiotics and tessalon pearls immediately to try and get on this. If I wasn't any better in two days I was to call my regular doctor and ask for a chest x-ray and a CT scan.
Fast forward to two days later, now ... I am in agony in my sinuses. My nose felt like someone was repeatedly yanking a wire brush through it and I thought my eyes were going to pop out of my head and my ears were going to go deaf. I called to get an appointment with my regular doctor (GP not rheumy) and was told she had no available appointments but there was a spot open with a Nurse Practitioner. I was desperate. I'd missed all week of work. So Thursday morning I went to see her.
That was a horrible experience. She kept skipping right over my disease. I kept telling her that this was exactly how I felt at the beginning of my diagnosis with Wegener's and that I wanted a CT of my sinuses and a chest x-ray. She kept explaining how the flu was bad and they didn't do those tests for sinus infections. She would order me a new antibiotic and a steroid nasal spray. I told her absolutely not. The nasal sprays make my sinuses hurt worse. I couldn't even do a sinus rinse without being in agony. Guess what was waiting at the pharmacy when I picked it up? Yep. A nasal spray. (It's still in the box)
I went back to work Friday, not feeling 100% but OK. Saturday I was at work again and about 10am ... things started to go south again. I felt awful. I was fighting really hard to stay at work and managed to make it til 5. We had plans to meet with friends for dinner and I really wanted to see my friends after being cooped up for so long.
On the drive down to see them, I started coughing like crazy again and my chest lit up like someone set fire to them deep inside. I literally sat up and felt the seat because my back was roasting. My seat was cold. I felt heat in every part of my chest, front/back/left and right. Awful. We made it through dinner but then ... as we were walking back to the car ... I realized it was hard to breathe. Like, I could breathe, but man it was hard. I was winded. This isn't normal.
I was still coughing and having a hard time. Dan told me to call the Kaiser Advice Line and they told me I needed to go to the ER so ... off we went.
Once again, it wasn't a pleasant ER experience. I felt like I was being brushed off again. I didn't get a breathing treatment, no oxygen. I was left there in a room coughing and in pain. The ER doc said he ordered a chest x-ray and I had to wait for that. I did it and .... everything was clear. I was given a steroidal inhaler that I can only use 3x day.
So ... he basically said "bronchitis" and referred me back to my GP. I said ... "No."
So ... now I have a phone appointment with a pulmonologist tomorrow and I emailed and called my rheumy who I had also contacted last week and was told to ride this out til Monday and then let her know. Well ... I"M NOT DOING ANY BETTER.
I feel like I am wearing a corset. I can't breathe that great. I get winded when I talk, I am light headed like I am not getting enough air. I'm weak. My chest BURNS. I just feel like I am being brushed off by everyone when I know there is something not right at all. This is terrible and a little scary.
I know my Wegener's symptoms were never all that bad. I know this ... I'm not afraid of dying but ... I feel terrible and NO ONE SEEMS TO WANT TO HELP ME!!!!!!!!!!!!!!!!!!!!!!

Anyway, that's my update.
I hate my life. I hate everything about my life right now.