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Marcy
08-02-2008, 02:10 AM
Well, here's my WG journey.... I was diagnosed in April 2005 with WG effecting my trachea, ears, nose, and lungs. Upon reflection I think I started having recognizable flares back in 1998, I just didn't know what it was. But in fall of 04 things started really moving at a rapid pace. It all started with a wicked case of hives all over my body. The only drug the hives responded to were steroids. It took several months to get them under control. At the same time I was ridiculously fatigued. Hardly able to perform my daily tasks. I'd come home from work and not be able to move from exhaustion. Around January 05 I came down with what I thought was a terrible case of strep throat. My nose closed, my throat swelled to the point that I could barely speak. My sisters are nurses, I remember asking them if you could die from strep. I felt like my throat was going to completely close it was an awful feeling. I was told by my doc to go to the ER, he thought I was having an allergic reaction to antibiotics. The ER docs gave me a shot of steroids and my throat opened right up. The next day I went to work feeling pretty good. But that was short lived. Within a week I was down again. Only this time it was getting much worse. My nose was full of scabs and swollen completely shut. I could not breath out of it at all. My ears were clogged with fluid and I could barely hear out of them. My voice was gone, completely gone. I was speaking in a barely audible whisper. I was coughing to the point that I would throw up. Then I started coughing up pee sized clots of blood. I was wheezing and barely able to walk up a flight of stairs. I was in pain all over my body. Now remember this all started in January but I wasn't diagnosed until April. During those months I deteriorated. Finally late March, early April I could no longer work. I was going to my primary doc and the ENT a couple times a week. I had a bathroom full of antibiotics that weren't working. I had every conceivable cold remedy, nothing helped. I thought I was dying, well, I was dying. I was unable to lay in bed. I had to try sleeping sitting upright on the couch. Noone knew what was wrong. finally the doc said go to ER. I went and they treated me as if I were faking. They admitted me for a week and treated me like I was a pain in their butts. They sent me home with nothing, no diagnosis, no meds. A few days later I got much worse. My sisters dragged me back to the hospital. This time the ER doc was good. He knew I was sick. He ordered a CT scan of my lungs. He saw nodules. He said he didn't know what they were, maybe cancer but it didn't look like it. I didn't care. I was so sick. I just wanted to know what it was. I just lay there on the ER cart trying to breathe. They admitted me. A day later they did a bronchoscopy. Aha!!! Their alarms started going off. Finally, a preliminary diagnosis of WG. But nothing concrete. They sent me home after a week, it was a Friday. I was to follow up with the rheumatologist the following Tues. I went to his office Tuesday morning, feeling awful. Still no medications had been ordered to treat the disease. It was still coursing through my body. The rheumy seemed panicked when he saw me. He called the Cleveland Clinic and got me in to see Dr. Carol Langford who quickly became my guardian angel. She saw me that day. She admitted me for a week. She started IV cytoxan and prednisone among some others. Within a few days I started to respond. Once the diagnosis was made I could start to understand what was happening. Up to that poing it was just a terrifying downward spiral. I had always been super healthy and active. Loved hiking etc. Tons of stamina. Then with WG everything changed. I was on cytoxan for 3 months and switched to Imuran, it didn't work so switched to methotrexate. Was on prednisone high doses for a year. Started to taper slowly, very very slowly. It took about 10-11 months to get off of it completley. Now I'm on methotrexate once a week. No pred for now and a fistfull of suppliments. I developed necrosis in both hips due to the steroids. I gained a ton of weight but lost it all with lots of exercise and dieting. I'm limited in what I can do. MY lungs are still scarred from the granulomas. I've got chronic shortness of breath. I can't do high impact activities due to the necrosis. But as long as I'm careful I have no hip pain. And so far, cross your fingers, I've been in chemically induced remission since January 07. To me my remission date is when I got off prednisone.
I'm sorry this is such a long post. I need to do it. Nobody truly gets it. It's still hard for me. I try to be positive but I'm depressed. I miss the way things used to be. I miss drinking wine and my husband's home brews. I miss being able to walk long distances without huffing and puffing. I miss not being able to run home if I get caught in a big unexpected rain storm. I know I'm complaining. I am grateful for a lot. I'm grateful to be alive. I'm grateful for my remission. I really am. But I'm having a hard time reconciling the person I was pre-WG with the person I am now. I'm the same, but so different. So, that's the story. Thanks for listening.
Marcy

andrew
08-02-2008, 04:10 PM
Hi Marcy...
You'll find many kindred spirits here. So many of us have hit that WG brick wall that forms the boundary of our 'new normal' :)

It's true, we do miss things we couldn't do. It's right to miss them, to grieve their loss. I guess it's a case of finding new things to do that make us happy. If/when your adoption works out you'll find there's heaps you can do and you'll probably be too busy to care about what you used to be able to do :D

Rest assured, most (if not all) of us here can relate. Part of the recovery process is physical but alot if it is mental. It's the letting go of the things that we used to do and the things that defined us. Then it's finding new things to do that keep us happy and sane. Also part of the receovery process is resisting the urge to choke someone when they can't understand that you're not well even when you don't look sick :D

Feel free to vent any time you like :)

RCOSSIO
08-02-2008, 09:55 PM
Hi Marcy,

Its unfortunate that it took so long to be diagnosed. It is so frustrating to hear that just doing a simple chest x-ray and CT scan could have found the disease quicker.

My Rheumy tells me all the time I was a textbook case, went to the hospital Sunday morning, that evening preliminary diagnosis of WG and confirmed Tuesday when they did the biopsy. My numbers are back to normal and although I do have side effects, like you I miss my morning runs, biking and karate. Being able to drink my collection of wines I have stored in my wine cooler or being able to enjoy my trips to Napa. Miss my precious bottle of 25 yr old Glenlivet scotch, or even a nice cold brew on a hot summer day.

As I look at the things I can't have or can't do I also appreciate the things I missed because I never stopped to admire or appreciate them. Especially the mad rush of daily life. I enjoy more of the simple things, I don't let minor issues impact me as much compared to when I was younger. I have become more patient and see much more clearly. I decided to live in the "NOW" because now is what I have.

After my diagnosis I realized that today, which is every day I wake up that I was going to impact somebody's life...whether that is my wife, my family (mother-brother-sister), my employees or customers I meet in my business, that I was going to do something for the better.

and...Hopefully one day (or in an few years) I can sit back with my wife overlooking the ocean (I live on the beach) and enjoy that nice glass of wine I so desperately desire!

Trish
08-16-2008, 01:01 PM
Hi Marcy
Oh how I can relate to how you are feeling. I have been so eager to hear someones full success story about how they could hardly breath but after a certain amount of time things improved and they were back doing what they used to do. Like you I used to be healthy and active, biking, hicking enjoying life to the max. I got so bad a couple of months ago with my breathing that they had to perform a tracheotomy. I thought I had gone through hell, but Im afraid that somedays this truly is it. Wearing a tight band around my neck with a pipe sticking out is the pits. It gets blocked and I have to clean it out constantly especially if I over excert myself (like carrying wood in for the fire!!) I have a valve which sticks out even more for speaking but find that it cuts the air even more so dont wear it and instead use my finger to speak. Some days its fine but mostly by the end of the day I just want to take sleeping pills and forget about it for the night as it all just becomes so unbearable. I will need to have this for at least a year as they dont want to operate for at least a year from my remission which was also a couple of months ago so looking forward to that time. My doctor has ordered a flat silver trachie to wear which I am so looking forward to as I wont worry so much about pumping It. Sometimes I feel so depressed and then other days I just cope. Everyone at work thinks Im marvelous as I just cope and dont complain but they dont see me when I really let my guard down like at home . I have become more domesticated at home and am trying to find other ways to keep busy and enjoy life. I am lucky I am still working at my same job although not doing my PA position (speaking clearly is pretty important for that role) so miss that side of things also but yes like what a lot of other are saying living in the NOW is important for your sanity and finding a different way of life that you are used to. Mind you I am still hoping that they come up with a cure as I really want to be active again as like you I miss it. All the best, sorry this isnt a bit more postive but sometimes its just a bit too hard.

Kind Regards
Trish

Carol
11-06-2008, 08:04 PM
Hi Marcy,
Sounds like you've had a tough time. I was diagonsed 6 months ago. I do have a glass of wine most nights - no one has told me I shouldn't. Have you been told not to and why? Please let me know!!!!!
Regards
Carol

RCOSSIO
11-06-2008, 10:48 PM
Carol,

Having any kind of alcohol is bad for your liver and kidneys while you are taking Cytoxan and Pred. The interactions are brutal. Please check with your DOC!

Marcy
11-08-2008, 03:41 AM
hi Carol,
I'm not sure what WG drug protocol you're currently taking - but for me I am currently taking Methotrexate weekly and no pred. The methotrexate is very hard on your liver and therefore, you are advised to not drink any alcohol while taking the drug. The same consideration was given when I was on Cytoxan a few years ago - no alcohol. However, I tried Imuran for a short period of time and the docs said a little alcohol was acceptable with that. I've never heard about alcohol and prednisone. As far as I know, there is no direct drug interaction there, but let's face it - Alcohol is an inflammatory agent and personally, it's not worth it to me to drink it knowing that I may be contributing to my disease activity.
Hope this helps, Marcy
Obama 08!!!

Carol
11-08-2008, 10:53 AM
Hello Marcy, you've certainly had a rough time. I'm so lucky that mine was diagnosed quickly although at the time it seemed forever - about a month. I think we are very lucky here in Australia with an excellent public health system. I'm wondering what "supplements" you take and how did you find out about them. I'm interested in this aspect but just haven't had the focus to explore any suppplements.
Regards
Carol

Sangye
11-28-2008, 02:37 PM
Hi Marcy,
I'm new and haven't posted my story yet--just reading all the other great posts, like yours. I'm so sorry for what you've gone through. I'm about 3-4 years into WG and not in a very good place emotionally right now. I hear you when you say how difficult it is to reconcile yourself with the person you once were. There have been so many things I've learned from this illness that I wouldn't take back. And I also experience deep grief over what has been lost, some of it permanently. It's okay--even necessary-- to let yourself feel the depth of that loss. Trying to cover it up when it's there only makes it louder. One thing I've learned is to be present with and accepting of, whatever you're feeling, to just be honest with yourself about it. I'm not in a grateful kind of place right now, but I know I'll be back there soon. Have compassion for yourself, whatever place you find yourself in at the moment. This is tough stuff, and none of us got a handbook on how to do it. (Did we? I mean, did I miss class one day or something?) It's true that no one gets it (other than the rest of us, of course). Serious illness is very isolating. And then you get something like Wegs : no one's heard of it, you never look as sick as you are, and then there's the If-you-were-that-sick-why-aren't-you-dead-yet reactions! Talk about isolating! Hang in there. I will, too.

Carol
11-29-2008, 12:57 AM
Hi Marcy,
I'm Carol from Australia. I have followed up other sufferers saying that they cannot drink alcohol. I have been advised "in moderation" . I figure that the one glass of wine has a greater therapeutic effect than the bad effect it may have on my liver. I probably drink about 6 glasses per week. I wonder if one ocasionally would have a bigger positive effect than not being able to have one at all?

ian anderson
05-20-2010, 09:14 AM
hi marcy nice to hear from you im new to forum read my story let me say this please take note YOU ARE the same person just because you have lost a physical side of you means that you were not focusing on your spiritual side and thats what counts your the same person everyone loves the same person that told others you love them the same person that helped others the same person that everyone can depend on physical things are temporary they last for a little while then go so what people dont think of you because you can run a marathon or lift the heaviest weights or do push ups with your little finger they remember you for being YOU so take care we,ll speak agn xx