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    Default My story and intro

    Hey everyone! I'm Jennifer and live in NC. I was diagnosed with WG in April of 2011 after about 6 years of unrelenting sinus infections and tons of antibiotics, surgery, a diagnosis of asthma and other assorted things. My diagnoses story thankfully didn't put me in the hospital, but it was a long road of feeling very bad for a very long time.

    I have had sinus problems in HS and then it really spiked in college so I was diagnosed with chronic sinusitis in probably 2007. I studied abroad in the spring of 2007 and was so sick the whole semester that all my new friends named my sickness "Steve." There were lots of jokes, about how Steve was a terrible ex, just wouldn't leave me alone, he couldn't stay away, I couldn't shake him, etc, etc. (I try to keep a good sense of humor about things lol)

    When surgery in 2008 didn't seem to help long term, I was treated for things like sleep apnea and asthma and acid reflux. Docs were so confused about the wheezing that seemed to come from just my throat in 2010... I now think it was the beginnings of sub-glottal stenosis, diagnosed last November but had been paused after the aggressive treatment at the beginning of my diagnosis. Anyway, after a while of losing my voice (once for two months while teaching, yikes!) and being generally hoarse and congested always, I looked in to getting allergy shots. I went to a local ENT (who has kind of a bad survey rep but I figured had a fully capable staff for giving allergy shots) and he said I had a staff infection in my sinuses, put a hold on shots, and gave me antibiotics to treat the infection. Y'all, when I went I didn't even know I was that sick because I got so accustomed to not being well that my baseline for when I was sick/healthy had completely vanished at this point. (It took years for me to relearn this.) A couple of months go by with no change and ENT recommends surgery (um, no thanks crazy doc.) I said no, and that I wanted a second opinion so he referred me to my current doc at UNC Chapel Hill and the doc basically looked at my slight case of saddle nose and years of sinus issues and diagnosed me in 5 minutes. New doc did not recommend surgery, FYI.

    I had a kidney biopsy to confirm diagnoses, and see if kidneys were involved (only slight damage) and now have been treated there for the past 6 years with a team of docs at UNC. Y'all know how it is, a specialist for everything! It has definitely been a period of highs and lows (trying to dodge steroids when possible) but also learning a lot about what my body is telling me. I have reached brief periods of remission but it's been very on/off. This year has been hard for me to realize (even with 6 years of knowing I have WG) what normal is for me and what extra things need to happen on the daily for me to reach remission, stay healthy, and do my thing. I had to learn to speak up. I think I wasted years of thinking I was okay but was in a flare. It's hard to teach yourself how to tell when something is up because no one can do it for you. Right now I take a lot of allergy meds, rise 2x day, have ritux infusions every 6 mo, and am on Cellcept. I can tell that remission is finally close for me and I'm really excited!!

    The vast majority of my issues are sinus and upper airway. It was really hard for me to understand this year what I should expect my new sick/healthy baseline to right not and in the future. Another challenge is that pre disease, I loved to sing and had a decent voice, and for about 6-7 years my singing voice was hoarse or gone. Whenever I'm on prednisone it comes back but as we all know pred is both a short term miracle and a long term curse. Sometime also a short term curse, depending on which side effects rear their ugly head each time! It hasn't been until the past year or so (since I've started seeing a new voice/swallowing specialist and also directed to a speech pathologist) that my voice is beginning to heal. It might not be where it was to begin with, but I'm not Adele anyway so it's okay!

    Mostly I've learned that sometimes it really does suck to have an AI disease, but it is far from the end of the world. It is manageable. It is doable. It scares me to think what could happen if I don't reach remission though, but I also know that I don't need to bring in worries about what could happen because that is a very pointless road. Yes there are some slight ways that WG limits me, mostly due to a slight drain on energy sometimes and just the general number of things I have to do to upkeep myself to not feel bad like meds and doc visits and rinses and the constant watch against germs while working in the school system (ha!). However, I can work, and I can go do what I want, and I can live my life and that's what I focus on the most.

    Managing my stress is been KEY. I learned a lot about how I deal with stress and how it relates to my physical health. Keeping a log of my symptoms and stress and other things helped me see how a lot of things in my life affect my health. I will probably post some things about my bullet journal up here one day! Most days, I am completely great at staying on the positive side

    Anyway, I have been lurking a while and though I would come out of the shadows. I found this forum during one of my more difficult weeks with managing all this and it really, really helped!!! Thanks


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    Last edited by goldenjen; 07-24-2017 at 11:30 PM.

  2. #2
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    Glad you came out of the shadows. Hope your improvement continues. Is one of your docs a wegs specialist? If not, you really should consider getting a referral to one. Good luck!!
    Pete
    dx 1/11

    "Every day is a good day. Some are better than others." - unknown

    "Take your meds as directed and live your life as fully as you can." - Michael Chacey, MD

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    Welcome to the forum, Jennifer. You had a tough journey; "Steve" is indeed a cruel friend. Your sense of humor and positive handling of the losses due to wg, are inspiring. Thanks for sharing your story with us. God bless you.
    Alysia
    dx 2008


    Here, I found my sweet love, my beautiful Phil
    http://www.wegeners-granulomatosis.c...ggren-254.html
    http://www.wegeners-granulomatosis.c...continued.html
    During long scary weeks at the hospital, my sweetie used to tell me, what I keep on telling him:"your love is what I live on"
    Rest in Peace, my brave Batman, take care of your weggies from heaven, and get a place ready for me, next to you

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    Thank you Jennifer for sharing your story. I'm wishing you all the best for reaching full remission. Welcome to the forum, the best place to share your joys and your frustrations with this unpredictable disease. Please take care of yourself.
    Jana


    It does not matter how slowly you go, so long as you do not stop!

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    Quote Originally Posted by goldenjen View Post
    Hey everyone! I'm Jennifer and live in NC. I was diagnosed with WG in April of 2011 after about 6 years of unrelenting sinus infections and tons of antibiotics, surgery, a diagnosis of asthma and other assorted things. My diagnoses story thankfully didn't put me in the hospital, but it was a long road of feeling very bad for a very long time.

    I have had sinus problems in HS and then it really spiked in college so I was diagnosed with chronic sinusitis in probably 2007. I studied abroad in the spring of 2007 and was so sick the whole semester that all my new friends named my sickness "Steve." There were lots of jokes, about how Steve was a terrible ex, just wouldn't leave me alone, he couldn't stay away, I couldn't shake him, etc, etc. (I try to keep a good sense of humor about things lol)

    When surgery in 2008 didn't seem to help long term, I was treated for things like sleep apnea and asthma and acid reflux. Docs were so confused about the wheezing that seemed to come from just my throat in 2010... I now think it was the beginnings of sub-glottal stenosis, diagnosed last November but had been paused after the aggressive treatment at the beginning of my diagnosis. Anyway, after a while of losing my voice (once for two months while teaching, yikes!) and being generally hoarse and congested always, I looked in to getting allergy shots. I went to a local ENT (who has kind of a bad survey rep but I figured had a fully capable staff for giving allergy shots) and he said I had a staff infection in my sinuses, put a hold on shots, and gave me antibiotics to treat the infection. Y'all, when I went I didn't even know I was that sick because I got so accustomed to not being well that my baseline for when I was sick/healthy had completely vanished at this point. (It took years for me to relearn this.) A couple of months go by with no change and ENT recommends surgery (um, no thanks crazy doc.) I said no, and that I wanted a second opinion so he referred me to my current doc at UNC Chapel Hill and the doc basically looked at my slight case of saddle nose and years of sinus issues and diagnosed me in 5 minutes. New doc did not recommend surgery, FYI.

    I had a kidney biopsy to confirm diagnoses, and see if kidneys were involved (only slight damage) and now have been treated there for the past 6 years with a team of docs at UNC. Y'all know how it is, a specialist for everything! It has definitely been a period of highs and lows (trying to dodge steroids when possible) but also learning a lot about what my body is telling me. I have reached brief periods of remission but it's been very on/off. This year has been hard for me to realize (even with 6 years of knowing I have WG) what normal is for me and what extra things need to happen on the daily for me to reach remission, stay healthy, and do my thing. I had to learn to speak up. I think I wasted years of thinking I was okay but was in a flare. It's hard to teach yourself how to tell when something is up because no one can do it for you. Right now I take a lot of allergy meds, rise 2x day, have ritux infusions every 6 mo, and am on Cellcept. I can tell that remission is finally close for me and I'm really excited!!

    The vast majority of my issues are sinus and upper airway. It was really hard for me to understand this year what I should expect my new sick/healthy baseline to right not and in the future. Another challenge is that pre disease, I loved to sing and had a decent voice, and for about 6-7 years my singing voice was hoarse or gone. Whenever I'm on prednisone it comes back but as we all know pred is both a short term miracle and a long term curse. Sometime also a short term curse, depending on which side effects rear their ugly head each time! It hasn't been until the past year or so (since I've started seeing a new voice/swallowing specialist and also directed to a speech pathologist) that my voice is beginning to heal. It might not be where it was to begin with, but I'm not Adele anyway so it's okay!

    Mostly I've learned that sometimes it really does suck to have an AI disease, but it is far from the end of the world. It is manageable. It is doable. It scares me to think what could happen if I don't reach remission though, but I also know that I don't need to bring in worries about what could happen because that is a very pointless road. Yes there are some slight ways that WG limits me, mostly due to a slight drain on energy sometimes and just the general number of things I have to do to upkeep myself to not feel bad like meds and doc visits and rinses and the constant watch against germs while working in the school system (ha!). However, I can work, and I can go do what I want, and I can live my life and that's what I focus on the most.

    Managing my stress is been KEY. I learned a lot about how I deal with stress and how it relates to my physical health. Keeping a log of my symptoms and stress and other things helped me see how a lot of things in my life affect my health. I will probably post some things about my bullet journal up here one day! Most days, I am completely great at staying on the positive side

    Anyway, I have been lurking a while and though I would come out of the shadows. I found this forum during one of my more difficult weeks with managing all this and it really, really helped!!! Thanks


    Sent from my iPhone using Tapatalk




    Sent from my iPhone using Tapatalk

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    Hi Jennifer! Our wegeners stories seem very familiar and I live in your sister city Raleigh. I too am now on cellcept only for the last 2 months and have been doing Rituxan after relapsing 2x this year on methotrexate. So much of what you said hits home for me. Sometimes is nice to know we are not alone and can be understood. I wish the best to you. Let me know if you want to grab coffee sometime!


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    Thanks for sharing your story! I appreciate your attitude - I try and stay positive as well, even when I am feeling overwhelmed by the myriad of pills, doc appointments, and random aches and pains. And I second your statement about speaking up. I have to always remind myself, that I know my body best. I didn't have a proper Rheumatologist for awhile, and was also treated for apnea, gerd, etc, with no luck. Wegener's has some many odd symptoms and effects on our bodies. I've had to learn that even if it seems unrelated, its worth telling my doc. Usually she says - its probably from the inflation in your <insert body part here>. Glad you are seeing some light at the end of the tunnel. Hang on to it!

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    Quote Originally Posted by meganjean26 View Post
    Hi Jennifer! Our wegeners stories seem very familiar and I live in your sister city Raleigh. I too am now on cellcept only for the last 2 months and have been doing Rituxan after relapsing 2x this year on methotrexate. So much of what you said hits home for me. Sometimes is nice to know we are not alone and can be understood. I wish the best to you. Let me know if you want to grab coffee sometime!


    Sent from my iPhone using Tapatalk
    That would be great! I'll message you


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    Welcome, so glad you shared your story. I totally understand what you have been going through. I have been missing in action on this site for many years and recently just got on today. My disease is very active right now, and had about the same symptoms you had and ended up hospitalized at Cleveland clinic in Ohio. I had my first dose of rituxan in June and waiting to get another one soon. I have been on cellcept for years but my disease was sneaky active and fooling all the doctors including myself. Part of me was in denial.
    hoping for a speedy remission for you!

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