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

  1. #31
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    Quote Originally Posted by drz View Post
    I posted a reply to this message but it disappeared so will try again. We were diagnosed with Wegs on same day and joined the forum in the same year. We are lucky to still be here while several of our active members from our early years are gone.

    I also agree it nice to hear from some members that have not been posting much here lately. i did some checking and many of the people that posted comments to my first post in this thread have not been active here for two or three years in some cases. Most are doing well living a good life and a few are gone from this earth and some might to be too sick to post or feel no need to make any further comments at this time.

    But as long as we keep having new challenges and health issues, we have something to discuss and share. Keep in touch and good luck with your upcoming medical procedures. Like I said in another post no one wants an award for most challenging case or difficult situation but you sure are a contender unfortunately and a great role model of how to enjoy one's life despite serious medical issues. Keep on keeping on VW. Best wishes.
    Hey DRZ congrats on 6 years. I hit it around the middle of June. Diagnosis-wise. It's weird...it doesn't seem like that long, and at the same time feels like it's been forever.

    Not as active as I was. To be honest I've had some depression around some of the people we've lost that has made me a little more detached. I really appreciate those of you that are able to not detach from this.
    ~ Bob

  2. #32
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    Drz,
    Congratulations, on your the six year anniversary of this gift that keeps on giving. I'm so sorry that you are having to go thru the other health problems, caused from this crappy disease. You do have a great attitude about it all, keep up your good spirit. It has been 6yrs that I got sick also, but wasn't dx'd until in Sept 2010. I'm a bit like Bob, I'm not on here much as it sometimes overwhelms me, with the loss of some of our dear friends. I wish you all the best with trying to find a way of moving around, without further damaging anything else. Take care.
    Jana


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


  3. #33
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    Having just passed my second anniversary last month, I understand the ups and downs, but it sounds like overall the picture is reasonably bright for you. Here's to continued enjoyment of the good moments and ongoing improvement. The constant vigilance required by "the new normal" is wearing... but obviously worth it!

  4. #34
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    4 years for me yesterday. Wow, what a ride!
    MikeG-2012

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


  5. #35
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    Quote Originally Posted by Jaha View Post
    Drz,
    Congratulations, on your the six year anniversary of this gift that keeps on giving. I'm so sorry that you are having to go thru the other health problems, caused from this crappy disease. You do have a great attitude about it all, keep up your good spirit. It has been 6yrs that I got sick also, but wasn't dx'd until in Sept 2010. I'm a bit like Bob, I'm not on here much as it sometimes overwhelms me, with the loss of some of our dear friends. I wish you all the best with trying to find a way of moving around, without further damaging anything else. Take care.
    The good news is I found out my ankle bone is sort of healing or trying to heal and my not so very knowledgeable doctor, the one who didn't think it was broken and told me to keep walking on it for 7 weeks, thinks it should heal up enough to walk on again in another 10-20 weeks. I have used the Exogen bone stimulator to try speed up healing over six weeks which I hope is helping. I suspect it might have healed faster if the break had been correctly diagnosed back in February so I wouldn't have walked on the broken ankle for seven weeks. But it is a relief or encouraging thought to think I should be able to walk again some time this year.

    I am going to see a orthopedic specialist this week to get another opinion on my ankle and to also get some advice about other joints being stressed and strained by using the knee scooter. The knee in my good leg, both elbows, and my wrists are sore. I have carpal tunnel in one wrist. I don't want to need more surgery as soon, or even before, I heal from the broken ankle enough to resume walking again.

    Being rather housebound for another 3-4 months presents a little challenge to maintaining a good attitude and happy spirits as it shoots the whole summer and requires a major adjustment in planned activities. It feels like deja vu in that six years ago I spent the summer in a nursing home learning to walk again and building up enough strength and self care care skills to move to a more independent living situation which is where i still am at present. In the nursing home I could not go any where with out assistance but did enjoy the outings when they were available.

    I have been trying to adapt to my downsized life style caused by my broken ankle by getting another knee scooter with larger wheels that is safer to use outside but they only come in a three wheel model which seems considerably less stable to me than the four wheel models. They are also larger so not convenient to use in any smaller place where frequent turning or backing up is required. One can't turn around or back up easily from a bathroom or any small room so its usage does pose a considerable challenge. It does handle the small bumps and cracks better but doesn't feel stable enough to use safely for any long outdoor use.

    The hands free crutches I ordered to try increase my mobility also yield a similar reaction of being too unsafe for me so I doubt either of these mobility aids will greatly improve my mobility. Even so i will try harder to get out for more than just my many medical appointments as I get tired of being house bound. Our activity director has been helpful in scheduling lot of activities in house and away for us and the bus has a lift so it can take people in wheel chairs so a scooter or walker is no problem either.

    I have been re reading some of these old threads , like what i learned from having Wegs, as the wisdom contained in the posts here help remind me to celebrate what i can still do today. Every day above ground is a good day, although some days seem better than others.
    Last edited by drz; 06-21-2016 at 10:04 AM.
    Knowledge is power! Wisdom is using it to make good decisions!

  6. #36
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    Thanks for sharing drz. I am always inspired from your strength, wisdom & amazing attitude. I am glad things are getting better. Hang in there.
    I keep you in my prayers with Faith & love ♡
    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.

  7. #37
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    Great news, hope you keep getting better.
    It will be 4 years on the 26 July since my son who was 14 at the time
    Was finally diagnosed, he was just 13 when he first became ill.
    He's also doing well
    All the best
    Jeanette x

  8. #38
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    My broken ankle has healed enough that i can start walking on it again while wearing orthotic shoes. I started walking with the plastic air cast early this month and didn't think it would be so hard to walk with shoes again but it was challenging the first day since the leg seemed a foot too short and kept collapsing on me after not walking on it in shoes for 100 plus days. But it felt great to be able to park my scooter. I only have to use it now when barefoot or without shoes. I hope to resume driving again real soon too which will end my housebound status.

    I hope my strained knee and elbows will also recover OK. My carpal tunnel in my wrists seemed to abate when I got a better wrist brace to wear and a taller knee scooter that put less strain on them.

    Learning to walk this time seems much easier than six years ago when i spent half the year in hospitals and nursing homes working on my rehab. I feel very lucky that despite the other health challenges of hernia surgery and broken ankle that my Wegs still remains in drug induced remission and hope it continues to stay that way for a long time.

    I tapered off my generic Protonix (proton inhibitor) to generic Zantac (ranitidine) and hope that works for me. I think the years of Protonix might have contributed to my broken ankle. I was also trying to decrease one blood pressure meds as it seemed too low at times but then it got too high along with increased pulse rate. so this will take a lot more monitoring and adjusting to find optimum level for me.

    The challenges of managing life with Wegs and type one diabetes together are usually on going due to the complexity of the diseases and side effects of the meds needed for maintenance. But life is good and i am still here to enjoy it. Like virginia satir said:

    "Life is not the way it is supposed to be. It is what it is. The way you cope with it is what makes the difference."

    So enjoy it the best you can.
    Knowledge is power! Wisdom is using it to make good decisions!

  9. #39
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    I am so happy that you are recovering, drz. Thanks for sharing and for always giving us inspiration & strength.
    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.

  10. #40
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    Good update, drz. Wanted to let you know that ranitadine seems to work for me, on an as-needed basis. Keep up the good recovery.
    Anne, dx'ed April 2011

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