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JudyJ
03-01-2010, 02:38 PM
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
03-01-2010, 03:45 PM
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
03-01-2010, 04:40 PM
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
03-01-2010, 10:16 PM
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
03-02-2010, 12:00 AM
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
03-02-2010, 01:11 AM
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
03-02-2010, 02:14 AM
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. :D

JudyJ
03-02-2010, 02:17 PM
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
03-02-2010, 02:36 PM
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! :D 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
03-02-2010, 02:37 PM
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

Sangye
03-02-2010, 02:43 PM
LOL-- Ya gotta take the certification class first!

I would have asked about it anyway. Denial takes a lot of forms and is so prevalent in Weggies.

Lightwarrior
03-02-2010, 02:46 PM
LOL-- Ya gotta take the certification class first!.

Okay, okay...I'm working on my pre-reqs

Sangye
03-02-2010, 02:50 PM
No worries-- you're an experienced nurse so you can skip some courses. You only need to do the supervised internship and you'll be a Certified Nag. :D

Redbecca
05-25-2010, 07:55 AM
Which hospitals and which doctors in California have seen the most Wegener's patients? We are in URGENT need of finding a hospital and doctors to transfer a loved one to. He's in his 60"s was in remission, had diarrhea for 6+ months, CMV (a common virus that most of us with healthy immune systems regularly fight off and are not affected by) was diagnosed as the problem for the diarrhea. He was put onto anti-viral med. And shortly thereafter has had high fevers. Diarrhea is gone now. But they are saying he has pneumnoia and possibly endocarditis now. Even mentioned sepsis (?) / blood infection. We are very concerned for his health and need to get him transfered from Chico to either San Fransisco area hospital or a Sacramento / Davis area hospital. Any recommendations for the best place? or for docs who have seen multiple Wegener's patients?
Thanks in advance!
Rebecca

JudyJ
05-25-2010, 01:19 PM
Redbecca,sorry to hear about your relative. I see Dr. Robert Shapiro at Sacramento Rheumatology on Scripps Drive. He has an associate that is also really good Dr. Weisner. I was at Mercy General in Sacramento. I think very highly of them both. I would not be here today if not for them. They do confer with Rhematologists in San Fransisco. They started the whole Rheumatology department at UC Davis years ago, if I remember correctly, then moved out on their own. They pretty much only take life threatening cases. Good Luck and God Bless.

sharon
05-25-2010, 09:38 PM
welcome JudyJ,
great to have you on board, so glad you found us. I have found this site very helpful, the more information u have, the more informed choices you can make, you are your own best advocate. Take one day at a time, live that day the best you can, the rest take care of themselves, as you have found worry and stress are our worst enemies. Once again welcome. :)

Sangye- you are such a gem, always helpful, always spot on, can we borrow you down here? I have been talking to Natalie, she may well have convinced me to give up my beloved coffee after one of your recent posts. Thanks where would we be without you? :)

Redbecca
05-26-2010, 02:16 AM
JudyJ,
Thanks for passing along Dr. Robert Shapiro's name. We've also been told about a doctor in SF named Sharon Chung. Have you ever worked with that doc or do you know if Dr. Shapiro has consulted with that doc?

Sangye
05-26-2010, 06:04 AM
Thank you, Sharon! I just share what I've learned pre- and post-Wegs. I hope it helps you. :)

JudyJ
05-26-2010, 11:04 AM
Rebecca
I don't know who Dr. Shapiro and Dr. Weisner confer with in SF Sorry I can't help you there. I pray who ever you go with will be exactly who you need. In this past year I have seen 7 different Drs. and Dr. Shapiro is the only one I truely trust. It is very frustrating. I have left 2 offices almost in tears because they did not know what to do or was told something totally different, So please be selective and careful and go with who you guys are comfortable with. Dr. Shapiro and Weiser are very agressive so if you choose to see them be prepared. Wish I could help you more. Good luck and I will keep you in my prayers.
Judy

sharon
05-26-2010, 03:56 PM
Good afternoon Sangye,
i am off to the sunshine coast tomorrow for a conference and break, i will be looking for alternatives to my coffee & choc regime. It makes so much sense. Once again thanks for taking the time to help us all.
Enjoy the rest of yr week and take care.

Sangye
05-26-2010, 11:07 PM
You're welcome, Sharon. I hope you have a great break! "Sunshine coast" sounds lovely. :)