Worst things about having Wegener's granulomatosis

[jola57]

There are many, many doctors who treat patients as $ signs, and then there are those that are too set in their ways of antibiotic, cough syrup and aspirin for everything and then there are the rare few that reallly care and will go the extra length for their patients. If you have one of the last ones, you are lucky unfortunately for most of us, we are stuck with what we got because there simply is no other alternative. The least you can do is insist that your primary care giver gets regular consults from a well known wegs specialist if you do not trust his/her judgement.

[alhartzler]

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.

After having several days to think about this experience, I have come to some realizations. I think that in large part this was definitely due to the physician being new to me and to Wegener's. So, in relation to your experience, I think it is probably very similar. That being said, I have settled down, and I'm not at all upset with him. I am more upset with myself that I got humiliated and tired of explaining, so I just left the office without better voicing my needs. Next time I see him, which I will, I am going to tell him exactly how I felt, but in a pleasant, assertive way. I hope not to have another experience like that one, and am taking responsibiility for not letting it happen again.
Thanks for your kind words!!! So much good support on this site!!!
Angela

[alhartzler]

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.

It makes me feel good to know that there are those who are happy with their care, and I also hope you never are made to feel what I felt. I am also very happy with my care overall over the past month and a half, mainly with the Cleveland clinic docs and with my own local rheumatologist. This PCP was new to me, and is probably in large part why he reacted to me in the way he did. Even though I still feel it was somewhat inappropriate. But I have to take responsibility in part and be more assertive with my needs from here on out. I will be letting this physician know how I felt in his office, and any further explanation of migratory arthritis that he needs clarification on. Thanks for your supportive words. Good luck with your current treatments and progress!!!
Angela

[alhartzler]

Jolanta,
Thanks for the support. I am taking responsibility for this one, and from here on out. I will make sure he understands migratory arthritis and Wegener's, if he is going to treat me in the future. I will definitely be more assertive with my needs, and won't be made to feel that way again. I have nothing to apologize for, or beg for. Just a treatment approach that covers all the complex needs of this disease. So, I will be making sure that he knows these things in the future, and/or to consult my specialists in Cleveland. Thanks again

[Chris G]

Good for you Kelly!!

[ArlaMo]

There are many, many doctors who treat patients as $ signs, and then there are those that are too set in their ways of antibiotic, cough syrup and aspirin for everything and then there are the rare few that reallly care and will go the extra length for their patients. If you have one of the last ones, you are lucky unfortunately for most of us, we are stuck with what we got because there simply is no other alternative. The least you can do is insist that your primary care giver gets regular consults from a well known wegs specialist if you do not trust his/her judgement.

I'm sorry you've had poor experiences with medical professionals, but I really see the opposite being true. Most of the physicians I know (and because of my husband, I know a lot) care very, very much about their patients and it is the rare few who are in it for the money. Out of all the docs I've seen for Wegs this past year, only one has left a bad taste in my mouth - and with him, he is just way too overbooked and not familiar enough with the disease. With the number of rare diseases that exist, it is very difficult for doctors to be well-versed in all of them, especially in a smaller community. Definitely fewer alternatives than a big city, but I don't think lack of experience with our disease is a reason to call into question a doc's motives.

[alhartzler]

I'm sorry you've had poor experiences with medical professionals, but I really see the opposite being true. Most of the physicians I know (and because of my husband, I know a lot) care very, very much about their patients and it is the rare few who are in it for the money. Out of all the docs I've seen for Wegs this past year, only one has left a bad taste in my mouth - and with him, he is just way too overbooked and not familiar enough with the disease. With the number of rare diseases that exist, it is very difficult for doctors to be well-versed in all of them, especially in a smaller community. Definitely fewer alternatives than a big city, but I don't think lack of experience with our disease is a reason to call into question a doc's motives.

ArlaMo,
I agree with you that one should not equate lack of experience with non-caring or poor motives. My experience was a combination of lack of experience, the fact that I was a new patient to him, and my inability to be assertive enough to make my needs known. I am definitely partly to blame. However, I did end up ultimately feeling humiliated, frustrated, and just plain bad. This is something I am working through. I'm sure you read my original few posts, so I won't rehash. I want to say, however, that I am overall very pleased with my caregivers in general, especially my specialists. I think this new doctor, who is now my primary care doc, will need some time to get to know me, and I will make sure he consults with my specialists in the future, as I think he is also new to Wegener's treatment in general. Anyway, I guess I'm rambling, but I appreciate your voicing your thoughts. Such a broad range of personal experience and wisdom.

[ArlaMo]

Angela,

I will absolutely admit to being a little sensitive on the subject of doctors and their motives - kinda comes with the territory when you're married to one
I just hate that they are sometimes all lumped together as being all about the $$$ when that is so opposite of what I've experienced.

[Daggar]

I have to admit some misguided anger with our GP leading up to Holly's diagnosis based on how long it took and the whole process of trial & error. Now that I've had time to sit down and look back at it without the "emotional" baggage -- I can't be mad at him anymore. The symptoms are very confusing (the kidney issue was silent for the most part) and for a GP it is very difficult to pinpoint anything without extensive testing. He did the best that he could under the circumstances and I can tell it eats him up whenever we see him. I'd hold on to the belief that to be successful in the medical field you have to be in it for more than the $$$'s.... at least I hope so.

[alhartzler]

ArlaMo,
I absolutely agree with you that the bulk of physicians are motivated by more than money, etc. That wasn't my issue at all. I also understand that it must be tough to hear about those who have had experiences to the contrary, especially when you are married to a doctor. Just didn't want you to misunderstand me or my experience. Mine was more about the humiliation of having to ask for pain meds and feeling as though the doctor either didn't believe me, or didn't understand the disease process fully. And, being loaded with prednisone, so highly charged emotionally. This was a humiliating, and new experience for me. I believe most people are inherantly good. I am usually an optimist in general, or I try to be, and I am working through my mixed emotions, and how to be assertive, etc. Thanks for your valuable input. You have a unique perspective by being married to a physician. And, I respect everyone's opinion.