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Thread: Celebrate how far we have come!

  1. #81
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    I reread this thread and some others. This stimulates lots of memories. I am impressed by the wisdom contained in many posts.

    I feel very fortunate to be doing as well as I am today. Especially when I read the posts of others who were younger, some were in better health, but now they are gone. It seems strange to me that some of them have been gone two or three years since it feels like they were just on here and i half expect to read another post from them again. But with Wegs anything can happen and happen quickly and knowing this can help us enjoy the present and to celebrate whatever life we now have today. Making peace with this possibility really helps and this was reflected in some of the posts of our departed friends.

    At my last checkup my Weg doctor reminded me of this. he commented on well I was now doing and he asked how long ago it was when we first met. I was in ICU at the time in Spring of 2010. He commented on how my survival seemed very doubtful back then so my ability to do as much as I can now is cause for joy and celebration. My neuropathy continues to progress making walking harder but I try to walk even more even though it is more difficult since walking and exercise might slow down the progression of neuropathy according to my doctors.

    My last labs were stable and mostly OK and in my usual best range. My nasal rinses are mostly mucous with little or no blood. Joint pain is back in mild range and energy level seems in my usual range which allows me a few hours of mild activity most days, often along with a daily nap or two.

    My doctor thought I could increase the length of time between follow up appointments and routine lab work too again. I think they know and trust I will contact them right away if I have any symptoms of a flare or new problems that warrant attention.

    Hope everyone is feeling joy about their being alive while they hope and work toward more good health. Have a Good Day!
    Knowledge is power! Wisdom is using it to make good decisions!

  2. #82
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    I just read this thread again to remind myself of how lucky I am to still be here able to celebrate my life as it is and to enjoy the challenges my health issues bring me. I will post more update details in another thread about my Weg's anniversary.
    Knowledge is power! Wisdom is using it to make good decisions!

  3. #83
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    Quote Originally Posted by drz View Post
    I just read this thread again to remind myself of how lucky I am to still be here able to celebrate my life as it is and to enjoy the challenges my health issues bring me. I will post more update details in another thread about my Weg's anniversary.
    we are lucky to have you with us, drz. thanks for sharing your wisdom and for being such a great inspiration for all of us. have a speedy and easy recovery of your foot.
    Alysia
    dx 2008


    Here, in this forum, I have found my sweet eternal love, my beautiful Phil.. :
    https://www.wegeners-granulomatosis.com/forum/threads/4238-pberggren-memorial-thread
    "You are my sunshine", he used to sing to me... "you make me happy, when skies are grey" I still answer him.
    Rest in Peace, my brave Batman and take care of your weggies from heaven, until we meet again.

  4. #84
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    I just read this thread again to remind myself of how lucky I am to still be here able to celebrate my life as it is and to enjoy the challenges my health issues bring me. I'm not sure where to post an update since I also have another thread along these lines.

    I was diagnosed in 2010 so it is going on 7 years soon. It took me about a year to reach a drug induced remission but I have been very fortunate to have remained in this status except for some mini flares. Some times were uncomfortable and required extra treatment, usually for infections. Feeling sick for a few weeks is no fun but much better than being in hospital for months.

    I am down to annual visits at Mayo for their longitudinal study on treating GPA. My degree of recovery from near death and length of remission is considered rather remarkable since most people flare in the first year or two after their initial treatment. I have damage from the Wegs and diabetes that require frequent on going maintenance and follow up care so spend much of my life going and doing various medical treatments. Dental problems have been especially frequent which relates to my two main illnesses and the treatment I need for for both. I had another root canal last month due to infected tooth.

    I have been lucky so far this winter in avoiding the flu, bronchitis, or sinus infections since the last two happened most winters. I think that keeping the humidity higher with a humidifier, using generic Mucinex and frequent sinus rinses has helped with this. I have cut down my monthly labs to every six weeks and will soon go to every other month. I must have labs every three months and see an endocrinologist in order to get my diabetic supplies. And some other doctors also require them for their annual review so I will need at least six per year but that sure beats the weekly ones in the nursing home or daily ones in the ICU.

    I was housebound much of last year with a broken ankle and need to use a knee scooter to avoid bearing any weight on that foot as it took several months to heal. The slow healing relates to my illnesses, meds, and age but the ankle did seem to heal without needing any surgery to repair it so that was lucky for me.

    I have never met anyone on this forum in person but feel I have "met" some great people through this forum that have been very helpful to me and others. I really appreciate the effort Andrew and Vaughn put in to make this possible. And the people who take the time to post their comments and share their wisdom and supportive encouragement.

    I think there is now more awareness and better treatment regimes than even a few years ago but we all remember the stress and anxiety that comes with being diagnosed with a strange illness we never even heard of. So here we can all help others and each other other through these difficult times.

    Happy Valentine Days and celebrate your life however it may be today since life is for the living. And we are still here. Remember our many good friends from here who aren't so to honor them have a good day.
    Last edited by drz; 02-10-2017 at 03:49 AM.
    Knowledge is power! Wisdom is using it to make good decisions!

  5. #85
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    Great post, drz, and congrats on your continued success in dealing with WG and your other health issues with such a positive and inspiring attitude. So glad you are getting the most you can out of life.

    Sheesh, just edited this to delete the long original post, and what a lot of work on my phone with Tapatalk! Guess I need to learn the ropes better.

    Sent from my MotoE2(4G-LTE) using Tapatalk
    Last edited by annekat; 02-11-2017 at 02:35 AM.
    Anne, dx'ed April 2011

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  7. #86
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    Well said my friend, well said.
    MikeG-2012

    "You never know how strong you are until being strong is the only choice you have"


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    Inspirational!

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    Out of pain & misery, the wisdom & joy of living...you're the best Dr!!!!
    Knowing how to think empowers you far beyond those who only know what to think. -NdT


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  11. #89
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    Quote Originally Posted by Dirty Don View Post
    Out of pain & misery, the wisdom & joy of living...you're the best Dr!!!!
    Thanks Don. But as Jack often said just because you have Wegs doesn't mean you can't have some thing else. And pain and misery can quickly return!

    Wednesday I felt very good after seeing my treating doctor and having good lab report again while hearing how lucky I was to have such a good recovery from Wegs. So I posted the above message the next morning. But as the world churns, things felt different a few hours later.

    First i get a big nose bleed while doing my usual morning sinus rinse. I told my doctor the day before I have not had crusting or blood in in sinus rinses for awhile. Then I start having indigestion and heavy belching. I have GERD and take two different meds for it. I take the max dosage and things calm down a bit so I go to bed but wake up at 3 AM with pain in my lower ribs and more heavy belching. Take more Gas-X but no improvement.

    I search on internet for some indications of what might be wrong and whether I need to go to ER or wait and try see my regular doctor in AM. This was probably not a good idea as it just makes me more anxious but I decide to wait. When I call in a few hors later the phone nurse says I can't see my regular doctor but she gets me in an hour to see a Nurse Practitioner in his department. She examines me and orders a chest X-ray of sore area and phones in order to put me back on Pantoprazole for my GERD as current meds aren't doing the job.

    For many years I took a double dosage of this med but after a ankle bone broke into two pieces while just walking down the hall I thought I would try go off it since that med can have a negative impact on bone health according to my Podiatrist (he switched to Zantac or Ranitidine for that reason) but after a few months this obviously was not working well enough for me even at the max dosage.

    To get a double dosage of Pantoprazole it takes some extra paper work as my insurance wouldn't approve it as prescribed. I therefore got a 90 day supply by their standards that will last me 45 days and give me time to get the paperwork done to get approval for a refill in six weeks.

    The X-ray did not indicate any broken rib or apparent problem so they believe it is a sore muscle or bruise from sleeping on my insulin pump during the night.

    I got a good nap this afternoon but decided to skip my planned concert tonight due to increased fatigue today.

    But things like this give me a slight pause to ponder about risk of saying things are going great. Does the wicked granny read this forum? Does saying good things irritate the sleeping Weg dog? Karma ? Or is it as I hope and choose to believe, just a the normal tendency for things to regress toward the mean average. Or my more normal state of having some health issue that needs attention. I often feel like an antique car that needs a lot of maintenance just to keep running and to stay moving down the road.

    But I am feeling better again (not belching much now) and hope to enjoy my planned activities tomorrow since I had to skip today's events. But learning to be flexible about one's plans is one of the many benefits you learn from having Wegs. The other is nothing stays the same so good times do end and bad times don't last forever either. And change can come quickly or slowly, but change will come.

    Hoping Don had a good day on the golf course! And others a good day!
    Last edited by drz; 02-11-2017 at 11:26 AM.
    Knowledge is power! Wisdom is using it to make good decisions!

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  13. #90
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    Hang in there, drz, sorry about the setbacks. Is omeprazole also a med that is hard on bones? I recently fractured my pelvis during a fall, and was taking this twice a day for esophageal ulcers found during an endoscopy. Of course we all know about the effect of pred on bones, too. I do have ranitidine on hand that I could use instead.

    Anyway, sorry about the new issues and hope you'll get back to your normal soon, in time to fully participate in your activities and enjoy life.

    Sent from my MotoE2(4G-LTE) using Tapatalk
    Anne, dx'ed April 2011

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