OK, my turn to have a little freak out. I've been off the site for a while as I've been feeling quite off. I hate bugging my doctor as I know he's busy, and I'm always afraid that I'm overreacting. Well after a week or so of having an internal debate whether or not to contact him, and feeling progressively worse every day, I finally decided to send him a fax yesterday (at our last appointment on the 20th of October, he told me to contact him if I have any problems and he'd get back to me as soon as possible).

I wanted to make it as easy as possible for him to give me some direction (and that's all I wanted, direction, I don't want to be molly coddled, or pampered, just want direction cuz I'm still a rookie in this land of Wegener's) so I sent him a very well organized fax outlining in point form what my symptoms are, what the variables that could be causing them are, what I've done so far to try and alleviate the symptoms, and a highlight of my ESR on my bloodwork. At our appointment (I was already feeling off at that time) my ESR was at 28. He told me that that's just one above normal (for women normal is your age plus 10 divided by 2, which puts me at 27). I took that at face value, but when I got home I noticed that compared to where my ESR has been since early July, the 28 was a huge spike. I was hoovering between 7 and 12 and then suddenly on the 15th October it went to 28. I made a note of that in the fax as well. Then I mentioned that I appreciate that he's busy and I hate having to contact him, but I would appreciate some feedback on whether I'm doing the right thing with the pred, or if I should follow up on this and see if we need to go deeper. Just some guidance.

Well!!! I was trying to have a nap in the afternoon (because my headaches are so bad at night that I can't sleep) and I got a phone call from him. Half groggy, and in a substantial amount of pain I answered and totally got chastised for contacting him with such insignificant symptoms. (Severe headache, earache, sore sinuses and nose, sore behind my eyes, sore teeth, shortness of breath, sore ribs and chest and some joint pain in my hips, ankles and knees) He asked me which of my symptoms was the most concerning, and I told him it was my headache. He then told me that a headache is not part of Wegener's and I shouldn't be bothering him with such things because he's a busy man. I told him that a headache was the biggest symptom I experienced before diagnosis and it's what made me search out for help repeatedly. But apparently it's not in the textbooks. I have not been made to feel like this since I was a kid and got in trouble from my parents. I felt 3 inches tall and could hardly keep my tears from showing through in my voice. It was like waking up and getting slapped in the face.... by the guy who's supposed to be the one who's there to help you out. I asked him what he meant when he told me that I can call him if I have any problems and he said yeah, but not for symptoms of a common cold. The symptoms of a common cold X 100 was what put me in the hospital in the first place and what made a number of doctors blow me off. I'm glad he wasn't on my diagnostic team in the first place.

I was sooooo choked yesterday, I felt like I could spit fire. I've lost quite a bit of respect and trust for the guy. Bri was trying to comfort me by telling me not to put so much weight into one phone call... and granted the guy might have had a bad day, but I feel it's bigger than just the phone call.

So after beeing madder than I have been in many many years, I spent 3 hours last night going through every rheumatologist, nephrologist and internist in Alberta to see what their specialty and/or interests are and then cross referenced it with what patients say about them. I think I found someone in Calgary (5.5. hours away) who's a rheumy specializing in vasculitis and I'll see my GP on Monday to see if I can get a refferal and get that ball rolling.

I know everything happens for a reason and this will probably turn out to be very good in the long run, but boy did it come with some very nasty feelings, and in the end I got absolutely NOTHING from him in terms of advice or guidance. He basically called me to give me ****.

How's that for excellent care?

There. I've had my vent rant, and I'm sorry to spill it on you guys, but if there's anyone on this planet who knows how I'm feeling I know it's you and it makes me even more determined to put our book together so that docs who think they know WG might be a little more enlightened as to what WG really is, and how different it is for everyone, and how important it is to look at each case individually.

I'm stopping now, cuz I can go on for a while as I'm still very angry at the whole experience.

ARRRRGHHH!!