Worst things about having Wegener's granulomatosis

[alhartzler]

Alhartzler, sometimes you have to ask exactly what your doc is thinking and not assume. You have to be agressive at times and lay down the law. It is unfortunate that we have to do this sometimes but it is your health, life, and future at stake.

I am not used to having to be aggressive. I agree with you, it is necessary at times. This is just new for me, as I have never had to be on pain medication in my life. And now, I have to ask for pain medicine, and explain weird pain symptoms, of which there are no outward signs of. It made me feel humiliated, and I don't think he believed me, because I am on so much prednisone. And, to top it off, I was sweating profusely. I just can't describe how bad it made me feel. I am a professional who deals in pain mgmt and medications. I am the furthest thing from a drug seeker that there can be. I know the dependency that can come with these drugs. Which, may have contributed to my feeling worse having to continue describing my pain, and feeling like the doc didn't believe me. To finish the story, I went back to see my rheumatologist, who refilled my prescription without question.

[Sangye]

Do you know of some religions that still espouse this philosophy? I know years ago this was a big issue which some parents losing custody of their children for refusal for religious reasons to treat them for illnesses that would kill them. I don't remember any such cases recently and wonder if this conflict still exists.

I think Jehovah's Witnesses don't allow blood transfusions but I'm not sure if that has changed.

[Sangye]

Angela, it's incredibly difficult to communicate under those circumstances (ie, full of pred, in pain and with someone who doesn't seem to care or understand). There's a difference between aggression and assertiveness-- the former will not get you anywhere and the latter will. I'm so sorry you went through this.

[alhartzler]

Angela, it's incredibly difficult to communicate under those circumstances (ie, full of pred, in pain and with someone who doesn't seem to care or understand). There's a difference between aggression and assertiveness-- the former will not get you anywhere and the latter will. I'm so sorry you went through this.

Thank you Sangye, I appreciate your caring remarks. Yes, of everything, this really bothered me the most. I can't pinpoint why, but I just can't describe the humiliation I felt. I guess the utter despair and realization of where this has brought me, and to what level. Just a really bad experience, and I'm not really even mad at the doc. Thank you again.
Angela

[Sangye]

You're welcome. I've been in that situation a lot. Therapy has helped me learn to navigate appts like that.

[alhartzler]

Therapy doesn't sound half bad, and even at this somewhat early stage of the game, so to speak. I could probably use it, and especially since I dont exactly know why it bothered me so much.

[Sangye]

I started therapy 3 weeks after diagnosis. I would have started sooner but got tons of blood clots! It's made a world of difference. Not just surviving Wegs (and everything related to it) but using this experience to change deeper patterns and habits.

[Chris G]

Angela -
Not to excuse your doctor's behavior in any way, but I'm wondering whether you have a long standing relationship with your GP? I think many times it has nothing to do with us, and more to do with the doctor's own fear, when they don't know us well. I'll give you an example: I have seen the same GP for years - many, many times while trying to get a WG diagnosis, and of course thru many sinus infections, etc. She has on occaision OFFERED me pain meds, without me asking, because she knows me well. But, once, when my husband was sick with bronchitis, and I was sure he was about to cough up a lung, I sent him to see my GP.......knowing that she'd take care of him. She sent him home with a prescription for a cough syrup, which my pharmacist described as something they'd give to a child!! I was SO upset !! And it still bothers me to this day, but I guess all can say is that she didn't know him at all.

I feel your anger AND your humiliation. It's bad enough we have to struggle with this "invisible" disease, and then to have DOCTORS not believe us, just adds to the frustration. Hold your head high.......don't be humiliated (easy for me to say, I know)! Next time you see him/her, you might even want to explain to him/her exactly how they made you feel.

[drz]

I think one of the worst things about having Wegener's disease is the feeling of vulnerability from having to depend upon many doctors and care givers. Some times it seems like a never ending search or quest for services you need to try understand what is happening inside your body and then to get appropriate help to try feel better.

In the past couple weeks it seems I have needed some medical service or two every day. I was just reflecting though last night how lucky I have been to get such good services even though my usual internist has been ill with flu for past couple weeks. Usually I have been seen with in a couple hours of making a request. This is at a regular clinic and not an urgent care with walk in services. I have been impressed with the apparent compassion, consideration and professional demeanor and responsiveness to my many health issues and problems. I believe I am getting good care for my issues and am very relieved it has not been a battle or source of frustration.

It is tough enough to deal with the illness without having to deal with an attitude on part on people that are supposed to help us.

I don't know if it will help improve the services to let them know how you feel when you think you have been mistreated, but it shouldn't hurt and it might help you feel better.

I hope we all can get the care we need to feel better soon and maintain a feeling of better health.

[drz]

I started therapy 3 weeks after diagnosis. I would have started sooner but got tons of blood clots! It's made a world of difference. Not just surviving Wegs (and everything related to it) but using this experience to change deeper patterns and habits.

I started in the hospital and a psychologist and psychiatrist came to see me in my room until I had processed enough so I didn't feel the need for more services.