New From California

[JudyJ]

First let me say, you are all the best! This is a real first for me, other than email, I just don't post anything. My daughter suggested I check out this forum because everyone, including my Rhematologist thinks I am in denial. So I have been checking this site out for about a month and you have answered so many of my questions without even knowing it. You have been a real blessing. OK My story.

I was diagnosed with wegeners in 1995 age 37. I was off work for about 5-6 months and lost about 25% of my kidney function. When I started feeling better I lost 100 pounds and walked about 2 miles per day. Was totally off meds for six years. I thought I was home free. No flairs, nothing, My ANKA still showed positive but I felt good. Woo Hoo!!!!!!!!!! Lo and behold this past spring I started feeling not so good. Went to my MD he thought I had a virus so I did not worry about it too much. Then the ear aches and horrible pain on the left side of my face. UGH!!! My MD sent me to an ENT who did not know what it was ( I am from a very small community with small community Drs.) I did not recognize it as wegeners because It had been so long and I did not remember having all these symptoms before. I don' remember too much about that time any way as my beloved brother was dying and I was helping my mother care for him at the time I was diagnosed. So during the time I got sick My mind was totally else where. That is another story for another time. Finally my little brain told me to call my Rhematologist and guess what??????????
Yep here I am again, thankfully I am not near as sick as before. There is no kidney involvement this time, so far. Mostly sinus, lung and colon, I feel very fortunate that I am doing so well, so far. I try to keep positive and busy. I have a wonderful supportive husband and 4 great kids and their spouses, 4 beautiful grandkids so far and I love life. Do I sound like I am in denial?????????????

[Lightwarrior]

New from California,
What are you doing for your flare?? Is your Rheumatologist treating? Are you in denial? Maybe you were, now it sounds like you are coping with the flare, after 6 years med free and flare free with a full plate I'm glad your brain told you to call your Rheumy. I was diagnosed in December 2009 and with all the challenges I feel very much that in many ways this was a gift, it force me to slow down (well a bit) and refocus on what was important in life. I love your description of your family and your profession of your love of life. Living with as opposed to giving into is a choice. I'm glad your communicating with this group you will find the participants very supportive and at times a lifeline when things are hard to figure out.

[jola57]

Hi Judy, doesn't sound like you are in denial. You did the rigth thing and called your rheumy. What treatment are you on?

[elephant]

Welcome Judy! So glad you are on this forum too. Just a word of advice...keep in tune with your body and be persistent. I have found even recently that some doctors will ignore your symptoms...just keep telling the doctor over and over and if they don't listen go to another doctor. I am changing primary doctors because of this. You know your body best.

[LilyPony]

I had a similar situation only less severe. I was diagnosed about 10 years ago and then told by a "wegs expert" that it would never ever leave the area around my eye and as long as I took Bactrim every day, I'd be fine. he said not to believe anything I read online because that wasn't the "type" of wegs I had. Well, I've been coughing ALL night for about 5 years with chronic stuffy nose. Always blamed on sinus infections or allergies. When I didn't get better, they always said it was viral and it would get better on its own. I never seemed to get 100% better when I got a cold. I'm sitting here as I type with a rib that I broke in two places from coughing so hard (caught another cold from my babies). It wasn't until about 2 weeks ago that I made the connection. It just randomly dawned on me that wegs affects sinuses and lungs and that's been the reason for the coughing. I'm still going through tests right now to determine exactly what is allergies and what is wegs. I had a chest xray last week and that came back clear, go in to have my head scoped out this week and bloodwork should hopefully be in.

So, I'm certainly not in denial. Like you, I was busy and just listened to what the doctors told me. I never made the connection because it was so long ago. I think in both of our cases, had the doctors taken the time to say that this disease is goign to be a lifelong situation, that you must always be diligent and awarre of your symptoms, and that it can be life threatening... then perhaps both of us may have seen it coming sooner. You're not in denial if you're on here admitting that it is wegs. You're staying positive and staying busy. What more can you expect from yourself? Do they want you to wallow in self pity as a way of coming to terms with it? That's not healthy. Just take the illness seriously, keep your appointments, take your meds, and stay positive.

[JanW]

I hate when doctors say that you shouldn't believe what you read online about your condition (they don't say that so much now as they did five or six years ago, I find). I'm glad that you found us JudyJ. I have found here that people's treatment varies so much by locale and the skill of their doctors -- this site really acts like a international clearing house of some of the best info out there on this disease. I don't think there's a question I've had yet that someone here couldn't answer.

[Sangye]

Judy, I'm so glad you found our group. Sorry your Wegs has flared up again. It might have been due to the stress of your family situation. I know stress has played a big role in the onset and activity in my case.

Why exactly is everyone telling you you're in denial? I didn't understand that in your post.

Also, I'm going to do my duty here and recommend that you get a Wegs specialist involved. Even people with isolated, minor involvement should have one. Sinus, lung and colon involvement (and past kidney) is not minor. Since you've been reading the posts on here, I'm sure you've seen us (and by "us" I mean "me") nag about this over and over.

[JudyJ]

Thanx for all your welcomes. To answer questions. I don't know why everyone thinks I am in denial. I try to stay positive for my family and friends. They worry so much and I Hate to see that. I think I have a healthy respect for my disease and I do try to rest when I am overwhelmed, but for me I feel better about life and myself when I can keep busy. I cannot say that I have not had my share of tears and heartache about all of this, but made the decision that while I am still here, I had 2 choices to either sit around and feel sorry for myself or live life. I did not want to leave my kids and grandkids with the memories of a sickly mom and grandma if I could help it.

Ok, Dr. and drug questions. I have the best Rheumatologist ever. I travel to Sacramento to see him but he is the best.I too recently changed primary care Drs. because of this flair. I almost felt like a traitor because we had been seeing our old Dr. for many years. I am still not sure we changed to the right Dr. That remains to be seen. I have been on most of the drugs in the past that most of you are on and am now on 20 mg. of prednizone, 150 of Imurin, Iron for anemia, Actonel for bone density and the ever greatful Omeprazole for the Tummy.

I think I agree with the stress thing too. I have never been under so much stress as when my brother died. He was very sick for a very long time and very stressful circumstances. This time more stress, nothing like before but I don't do stress well.

I am so glad that you are all here, I'm sorry that we all share such an awful reason but it is good to know there are others that understand and can relate.

[Sangye]

It's nice to see that you have a positive outlook and want to stay active. That really helps you get better. I do want to suggest something--take it for what it's worth. In my experience, when everyone around me sees something that I don't, I spend time contemplating and reflecting on it, to see if there's any truth to it. If it's just one or two people telling me something, that's probably just a statement about themselves. But if even your doc is telling you that you're in denial, it might be worth considering.

Is your new rheumy a Wegs specialist, or does he consult with one from the VF? I'm gonna lean on you if not, just giving you fair warning! Even if things are going as planned right now, Wegs can change on a dime and require a true Wegs doc to manage. Like that saying "Expect the best, but plan for the worst." Something like that, anyway. Good advice for Weggies.

[Lightwarrior]

New in California,
I'm glad that you are joining the group, you originally ended your first postl with "Do I sound like I am in denial????????????? " I probably got the ball rolling by addressing that, sorry, I just want to grow up and be 1/2 the nag Jack, Sangye and Elephant are (LOL). I think you attitude is amazing and it is clear that you are positive. I look forward to learning from you. Namaste