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Thread: My third anniversary of my Weg diagnosis is today.

  1. #11
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    Wishing you continued good health in this and coming years!
    Mary
    dx'd Janaury 2013
    involvement: lungs, kidney and sinus

  2. #12
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    Quote Originally Posted by drz View Post
    Last year close to my second anniversary of diagnosis I posted about my diagnostic experience and improvement. Now one year year later things are much the same. Right now I am feeling good and back in a drug induced remission again. I had two infections this winter which cause the Wegs to flare two times during the holidays from before Thanksgiving through a couple weeks after New Years but since then have felt pretty good again.

    I see a lot of doctors frequently at seven different locations to monitor my health and they say I am doing better than last year. I feel very fortunate and am very happy about the degree of recovery I had from my worst times, but i am still hoping for further improvement in the next year.

    Some times when I am feeling pretty good I get delusions of adequacy and try to do some task that used to be very easy for me and then end up having to spend a day in bed resting up again. I am getting much better though at rationing my "spoons" and taking naps PRN before I over do things and crash. I am now much better at accepting my new "normal" and find it mostly enjoyable despite the various limitations from the Weg damage and need to have a medical appointment or two almost every week. This usually means a day trip out of town (over 9000 miles last year) But I know that unless I am diligent in trying to maintain what health I have left, I will have little joy in Muddville.

    Have a good day unless you have made other plans!
    I made it to year four. Most things are about the same. More dental problems and skin issues and neuropathy continues to progress but kidney function and lung function has remained stable. I still am viewed as being in a drug induced remission with no ANCA activity. I was able to cut down on my medical travel by 30% which seems a major progress despite having some new issues. I got through last winter without any ER visits or sinus infections which was great feeling but did need antibiotics for a tooth infection and root canal.

    I reread the notes my daughter wrote about my care four years. Four years ago I had just come out of the drug induced coma and intubation and starting the long rehab process. It is amazing to me when I read about my limitations back then that I have recovered to to the degree that i have. I was very uncertain four years ago if I would ever be able to do many of the things I now can do again. It can take a long time to regain strength and some functions.

    I have made great progress in the last year in reducing my delusions of adequacy but still have some daydreams of things that might be, which may or may not be unrealistic fantasies.

    Again best wishes for a good day unless you have other plans.
    Knowledge is power! Wisdom is using it to make good decisions!

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    wow drz. what a beautiful progress. thanks for sharing. you are giving us hope that things can be better even if it doesn't seem so while being during tough times..... and also the acceptenace of what we can and what we can't is so important.
    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.

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    Thanks for sharing, drz. I'm glad you've made such progress, and it's always good to hear your sensible and thoughtful point of view on your own case as well as others'. My anniversary of dx and treatment was 3 years ago April 12th, so you are almost exactly a year ahead of me.
    Anne, dx'ed April 2011

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    I'm happy that you have made it four years and made such great strides in your overall health. Thanks for sharing your story.
    Cindy



    Earth is just a stopover and whatever you achieve there is only a small part of the deal. The Afterlife Of Billy Fingers


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    It is now four years since I left the Nursing Home and things are still "holding". I feel my delusions of adequacy have some times been replaced by somewhat more realistic and hopeful optimism that I might again be able to do some things again that i have not done since I got Wegs. I took my first solo fun trip to East Coast to visit my grandsons and their family and am looking at some other short fun trips like maybe a Road Scholar low activity session if I find one close enough.
    Last edited by drz; 09-09-2014 at 01:14 PM.
    Knowledge is power! Wisdom is using it to make good decisions!

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    Happy anniversary.It is good u r doing well.

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    Great to hear you are feeling good Maybe you should plan a trip or something fun for your fifth anniversary? And I don't mean a medical trip

    It seems that the progress can be quite slow at times, but when looking a few years back its actually a lot better than one would have noticed. At least I felt the only sudden improvements were when I could drop the high pred doses to smaller once, otherwise I would only notice if I thought that two months ago I wouldn't have had the energy to do these activities.
    Diagnosed 08/2013, Relapse 07/2014, Relapse 5/2017 (although early signs of it from 12/2016)

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    Drz,

    I am so happy for the progress you have made, congratulations on 4yrs. That is amazing that you can do solo trips now and are making plans to do more. You have certainly come so far in the last year. I'm wishing you all the best for your continued positive progression in your journey.
    Last edited by Jaha; 09-11-2014 at 06:26 AM.
    Jana


    Do not fear anything, just do it afraid!
    It does not matter how slowly you go, as long as you do not stop!


  10. #20
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    Quote Originally Posted by drz View Post
    It is now four years since I left the Nursing Home and things are still "holding". I feel my delusions of adequacy have some times been replaced by somewhat more realistic and hopeful optimism that I might again be able to do some things again that i have not done since I got Wegs. I took my first solo fun trip to East Coast to visit my grandsons and their family and am looking at some other short fun trips like maybe a Road Scholar low activity session if I find one close enough.
    It is now five years since I left the Nursing Home after a three month stay for rehab work. I am very grateful and appreciative about having these five years. I was the only person on my unit of 40 people who was able to return to a more independent living situation. I live in a Senior Housing complex in the light assisted living section. I have only spent a few days in patient in the past five years and generally been in a drug induced remission most of the time.

    I still help support several doctors at several different medical facilities with out patient appointments and log several thousand miles of travel each year for my many medical appointments as most are out of town and require a drive from one to three hours. This week Monday was a Holiday but I had medical appointments on three of the other four days and also spent a couple hours on the phone for insurance, supplies, appointments related to my health care.

    So this weekend I will scale back my fun activities to rest up a bit and try relax. Other wise I tend to be rather busy when not napping or resting doing fun things I enjoy like attending concerts, walking in the woods or parks, playing cards or visiting with friends.

    So generally life is pretty good now and certainly better than it was five or six years ago.
    Knowledge is power! Wisdom is using it to make good decisions!

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