When in Doubt Kiss your Dog

[Pierrette]

Hello, my name is Pierrette,
I live in Tujunga, California USA (west of the Rose Bowl at the end of the San Gabriel Mountains) with my husband of 30 years and two brown labs. I am 55, tall, large, goofy with a creative streak and a loud laugh. For 19 years I had a terrible stressful thankless job- a commercial high liability escrow officer - and then I walked away from it one day in 1994 and surfaced at a large law firm as a paralegal. I work with type A driven smart successful men. I deal with everything from property tax appeals to estate tax returns and trust allocations upon death. My boss, a kind and careful man, still steps over the line with my stress level. Remarks made in this forum about - how can you be so ill and look so good - directly resound with me. It is hard to halt the billing machine. It is hard to put on the cruise control.
My mother, my worst moment, telling my mother I was diagnosed and explaining it to her, my beautiful saintly mother still repeats - but dear, you look so good. What irony. I look really good and I am sick. Raspberry noise.
Back track 2007 I ease my aunt - passing from terminal cancer. Now it is 2008 I am past my menopause and way too overweight. That is it. Enough already. I commit to my weight loss and I lose 50 pounds in 6 months (eating weight watchers plan), 2009 I lose 10 pounds. I can't walk the weight off - bone spurs. I hate the weight room so I start swimming slowly laps laps laps on my back - then up to 1500 to 2000 meters every other day. Hey I am doing really good except these hives keep bugging me. So I find a allergy specialist and do every test and no allergy. Gee wiz I was really worried about the prick on my back (dog allergy). Off to Hawaii - Kaanapali Beach, I am in paradise, lying around and I have dreadful fatigue. I sail through the liver and other tests, then flunked the anca. Off to an internal medicine man ct scans and x-rays showed an enormous hole in the sinus cavity and I started crusting, slight bleeding in my nose and inflammation under left eye (my eyes tend to tear in the morning) October 2009 bad news Weg diagnosis.
October 2009 I was scared to death - websites are very very scary. Ugh 2 days of crying. Ugh. I found a lady to talk to in Solvang, another in San Diego, they told me their stories and I slowly came to terms. Then I felt guilty that I was doing so good and was so lucky to have the diagnosis so early. By talking to other patients and reading through this forum it seems that I am in pretty good shape. I am only on Bactrim, antihistamines and I take large amounts of cranberry pills. My anca titer is no longer positive as of last test- my sed rate is pretty good too. No nodules in my lungs and no kidney involvement - yet.
Here is my term sheet: One day at a time. Try to think positive thoughts. Continue swimming and working out in the pool - eat less and walk around hungry (like my dogs). Leave work when I am tired. My nose will certainly collapse and my life will go on. I will have good days and bad days and I will be and I am grateful for each day I see my husband, my friends and every sunset over the San Fernando Valley and every time I toss a ball to and kiss my dogs.
I almost died in a car accident in 1996. My life outlook changed, I slowly recovered from the medical and mental effects of the accident. Now, in the last 5 months, I am back to searching for the correct blend of work, life and love (time for me and time for everyone else). The search is never ending I don't think I will ever have the answer. But I am grateful for this forum and knowing there is a place I can locate other people - that I am not unique. God bless you all.

[Jack]

Hi Pierrette
Although I'm sure it does not feel like it to you, you are one of the lucky ones having only limited involvement and an early diagnosis. You must take advantage of this position to make sure thing don't deteriorate. At the first sign of any new or worsening symptoms, you need to get immediate treatment to stop it in its tracks. As I'm sure you know, this is a sneaky disease and if you don't look for the signs it can be causing serious damage without you even knowing. In my own case, I went from sinus trouble to kidney failure and organ shut down in two weeks in spite of being confined to hospital.
If you don't already have one, you need a specialist who knows Wegener's inside and out. He will probably be a rheumatologist, but there are others. The correct treatment of Wegener's is not something that can be picked up from medical books!
Best wishes.
Jack.

[elephant]

Welcome Pierrette! That is great that you are just on Bactrim. You sound like a very positive person. I agree, it is a battle to find the right balance but you do the best you can. Did they put you on prednisone when you were first diagnosed?

[JanW]

Welcome Pierrette! It's great that you are feeling good and so far has limited involvement. I have limited involvement with just my sinuses, throat and lungs being affected. Next month I am going to have surgery to open my windpipe back up, which has been scarred by this disease. I was misdiagnosed for many years (dating back to 2005), and only diagnosed in the middle of January. I wouldn't worry about your nose collasping. Although mine did, I really don't have much nasal inflammation or anything worse that cold symptoms going on inside my nose. I'm sure that most people here who have horrible crusting don't have the saddle nose. It's a relatively rare manifestation (around 20 percent) of WG and a few other AI diseases, and not necessarily reflective of the agressiveness of the disease (my disease doesn't seem to have progressed agressively since 2005 yet my nose collasped seemingly overnight during the summer. Plus, they can fix it, even if it does (that will be next for me, down the road).

[Sangye]

Hi Pierrette,
We're glad you found this group, too! Feeling alone in the world can be one of the hardest things when you have Wegs. (I went 2.5 yrs without knowing anyone!) Even with a great support group, you can still feel misunderstood in your daily life among friends, family and co-workers.

I second what Jack has said. Even though it sounds like you're doing okay now, please do find a Wegs specialist to oversee your care. We can help you find one.

What meds did you take? A giant hole in the sinuses indicates the Wegs was somewhat aggressive.

Why so much cranberry? Just wondering.

[Lightwarrior]

Pierrette,
I am a new member to this group also and i have to say that it has gone a long way to keeping me sane. (Big leap, assuming i was sane to start with??) All of the strange seemingly unconnected events over the past couple of years all fit toghether now. The hardest thing for me to come to terms with was being unable to quantify and catagorize what was happening. I spend my life teaching smart nurses how to anticipate and prevent the next event. Wegs is sneaky and I am trying to embrace that it fits nicely into the chaos continuum. Your sense of humor is awesome and I look forward to your contributions to this wonderful forum.

[jola57]

Hi Pierrette, glad you found us. You sound like you have a good outlook on life - good for you. The more humor the better. One thing, do find a good wegs doc and listen to your body.

[Pierrette]

Thank you Jack, I like your hat. You are very generous with your information to everybody. I was lucky and stumbled upon a rheumy guy geograhpically close to me - a Dr. Noritake. Doctor No (very un-James Bond like) is a very careful and cautious doctor and I have been comfortable with our relationship, his care and reasons why some meds now and some meds later. I also was trying to locate a Weg doctor specialist and when I did searching Dr No's name up with papers publish in Am Med Journals on the subject. Okay so I have one doctor that is my main guy. Next, I still needed an ENT surgeon's opinion about what is going on in my face and the possible surgery for the saddle-nose. It is hard finding the right doctors in Los Angeles. Los Angeles is the land of plastic surgeons - many were recommended to me and none took insurance, some professed Wegeners past patients - but I didn't get the correct feeling. I spoke with a Weggie lady in San Diego who gave me the name of her ENT at Scripps (a respected hospital about 120 miles away). I spoke with this doctor and he gave me his buddy in Beverly Hills, a Dr. named Nicholas Schenck who works out of Cedars. (Cedars is a hospital on the west side - Michael Jackson, Liz Taylor etc.....) I was shaking my head when I researched Schenck - when you google him you come up with a profile in a Malibu magazine worthy of a Woody Allen movie character. But after talking to all these plastic surgeon's nurses and getting a feel for things then speaking with Dr. Schenck's nurse and his practise I have made an appointment for his assessment of the hole in my head. I have made a bit of progress. And hey, perhaps I can find something at the Vasculitis Foundation conference being held in Long Beach this summer. Thanks bunches Jack, its really comforting to know you are there. Regards ~ Pierrette

[Pierrette]

Hi, South Carolina Elephant. Why Elephant? A Lucky totem perhaps?
"Did they put you on prednisone when you were first diagnosed?" No, um because I seemed strong. My overall condition seemed like I was getting over the flu some days and some days like a mild cold. But I had to take some 2 weeks ago. I caught this crudy cold/cough that is goping around and my asthma kicked in and the guy at urgent care gave me some. I have a small dose of the cough in the morning and the steriod knocked my hives into hiding. Perhaps for the first time in 3 years no hives for about 2 weeks, but they are creeping back on my stomach. Erg. - P

[Sangye]

Pierrette,
It really looks like your Wegs is being totally mismanaged by people who don't have experience and/or aren't treating you on a regular basis. It's very dangerous to put someone on pred for a short time the way the ER doc did. You really need a Wegs doc prescribing pred when you have Wegs.

Also, please see an ENT who is highly specialized in treated Wegs, not just a plastic surgeon. Even a great plastic surgeon won't know how to address the concerns of a Weggie unless s/he has treated tons of them.