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Thread: What I have learned from having Wegener's granulomatosis?

  1. #61
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    Quote Originally Posted by drz View Post
    Right now I am working on learning to enjoy the help others are offering me since my mobility is limited by my broken foot. I also learned that one can be happy and have fun times even when your life space is limited by your illness or health condition.
    Might want to ask your doctor about the Exogen bone stimulator. If your insurance covers it, it might help a broken foot heal better. It did for mine!
    MikeG-2012

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


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    Quote Originally Posted by MikeG-2012 View Post
    Might want to ask your doctor about the Exogen bone stimulator. If your insurance covers it, it might help a broken foot heal better. It did for mine!
    i will get an x-ray in a few weeks and will ask about it then. I have three of the conditions that might warrant its use so if the break isn't healing well, I certainly will pursue it. Any thing to shorten the heal time would be a wish come true. Thanks.

    Did you insurance cover it? Did your doctor say it was medically necessary? That is the criteria my secondary insurance uses. Medicare uses it own rules and is pretty conservative in what they allow coverage.
    Knowledge is power! Wisdom is using it to make good decisions!

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    They say nothing lasts forever but I have learn in the year or so that wegeners is forever.
    lightning crashes
    leigh

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    Quote Originally Posted by drz View Post
    Did you insurance cover it? Did your doctor say it was medically necessary? That is the criteria my secondary insurance uses. Medicare uses it own rules and is pretty conservative in what they allow coverage.
    Yes, medically necessary. If it didn't heal with the stimulator, the next step would have been pins bars, etc.--SURGERY!

    Insurance paid for it, and I am glad for that. Had they not paid, I think I would have out of pocketed it, I was desperate to get back to semi-normal walking again. EBay has some older models...
    MikeG-2012

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


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    I learned that a portable oxygen tank weighs 10lbs! I know because I weighed and my old back injury is haunting me, (a broken back ). I have learned that I try to concentrate on doing the right things where my Wegs is concerned, I'm side tracked by the fact that I am unable to be as mobile as I would like and due to the destruction to my lungs from the wegs! I have severe stage COPD as a result! I have learned that looking at life and living with in a box and I am/used to be able to go out side that box and had lots of room in that box of life. That box is so small now and I cannot go out of that box because I cant breathe, i.e., go when and where I please without restriction, working in my wood shop as much as I want to or just enjoying any recreation as I get to watch my family enjoy the adventures of the trails at the campgrounds or to play and rough house with my grandkids!
    However, I recovered to a point from the L-3 compression fracture! I survived a bout with stage 4 cancer in 06, met up with diabeties in 08, lost my oldest sister two weeks after my dx to complications of diabeties! Suffered sinusitis from 2008 to 2009 when I finally had sinus surgery only to have relief for a week or 2! A month later. I lost 2 lobes of my in right lung in January of 2010, only to become sicker and in April 2010 I break out with purpura and I'm told its vasculitis and my treatment was pretty iffy at best because of the drugs I needed and because I had a cancer history, there was a lot of discussion about how to treat me! I learned that I was the topic of a call between up to 4 hospitals for the experts to devise the plan for me and it was cutting edge to treat my Wegs! It turns out it is the same treatments that everyone else gets but there was a fear that I could die from my treatments!
    So here is what sums up about all that is going on in my life and that is that, When ever life throws me crap, I pick it up and throw it right back at life! I don't fear death and look forward to the day that I am called! From my cancer survival, to the lobectomy, the Drs just don't know why I'm am still going! I also have involvement in my kidneys but they are functioning at a lower capacity and the dr is not sure what I'm am doing but wants me to keep doing it, I have no idea, except I have that attitude and I approach everything with a positive attitude!
    I am learning everyday as I bet about everyone here is also. Life is good if you can over look a few setbacks and work with what you have!
    Nobody knows how we got to the top of the hill. But since were on the way down, we might as well enjoy the ride!
    James Taylor, Secret Of Life

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    I detect a bit of depression along with reconciliation of the inevitable, Tom. I've been there -- actually, most of us have been there from time-to-time. Six months ago I was in the same state and for much of the same reason. My lungs have also gone to crap, but for different reasons. Seems my pherinic nerve is damaged and my diaphragm on the right side is paralyzed, which renders my right lung pretty much useless. I'm not yet to the O2 tank, but I couldn't sleep without the pressure from my bipap.

    For me, things seem to go in about a 6 or 9 month cycle from crumby to good and back. I hope the same is true for you and that you are in the trough of a crumby cycle.

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    Hello vdub, I have found the o2 to be my new BFF. I tell my wife that she used to be the one I couldn't live out but I couldn't live with her either! I have told her that the backpack for my portable tank and her have a lot in common, "THEY'RE BOTH ALWAYS ON MY BACK"! Fact of the matter is, under the circumstances, I wouldn't trade either of them for all the tea in China!
    I think you misunderstood my post! Part of it was what I have learned from the Wegs and other issues! The other parts of that were observations about myself!
    I have my regrets that I wish things were different but they are not. I always accept the things I cant change and work to make the changes I can. When I fell and got injured, I remember not feeling my legs and lying on the cold ground before I passed out
    I learned in 2000 while healing my back that there are others worse off than me and never to take things or life for granted. The acceptance of all I get to go through in life started with a trip for xrays at the hospital for follow up! I passed a young fella maybe 9 or 10 yrs old in the hall near the PT room. He was accompanied by a nurse, his mother and grandmother I assume!
    he was wearing the same turtle shell I was for support but he also had support for his head I could walk and he was learning how to use a wheel chair that he was in!
    I shuffled down the hallway with my walker and I stopped and looked one last time at that young boy! I'm not a praying person but I bowed my head and begged for god to put me in that chair and let that little boy grow to be a man. If I could have I would have willed him out of that chair myself and put myself in his place! I came home and told my wife about what I saw and felt and I didn't get it all out when I broke down fast and unexpectedly and told her that I will never be worse off then the other person! The sight of that little boy in that chair, and the lookin his families eyes will never leave me! And to this day and even now it brings tears to my eyes when I recount it to someone else! I think on that day, I was given a gift and if this is part of the gift then I will find the meaning of it and that is that I am considering body donation and maybe something can be gleaned from my Wegeners!
    I make a lot of observations of myself and others and I'm am in tune with my body and listen to it!
    I guess the good lord had other plans for me and I have taken them on so that maybe a little kid or family member wont have to! That's just my little bit of hope!
    I have regrets but have learned that I can work through them! As you know with lung issues or at some point I'm sure you will, you will feel your lungs progressively getting worse! I have those times, I talk to my wife and I get a good cry for about 5 minutes and then I'm off to the next phase of the Wegeners, COPD diabetes or what ever it is and I face it with determination! I do complain some but not a lot of regrets other than where it concerns my grandkids that I want badly to see them grow and move into adulthood and be happy and healthy! At this point I pray for those things for them. I have accepted my out come of the present medical issues!
    I am very content with life as it is but wish it could be different and that may be why you thought I might be depressed. I think that little boy in the chair did me more good than I wanted to do for him!
    I know that someone else is always worse off than me and I learned at that point to try not to dwell on the bad! I also learn a lot from this forum and it is part of my well being because I can always find other who are dealing with this dreadful disease in different and worse ways than me!
    The comment about Life throwing me crap and I just pick it up and throw it right back. If you are familiar with the Country song by Rodney Atkins, "If your going through hell keep on going, because you might get out before the devil even knows your there" ! I feel like I go through hell lots of times But I keep going! I was doing it this way before the song came out but it was the way that I roll!
    Nobody knows how we got to the top of the hill. But since were on the way down, we might as well enjoy the ride!
    James Taylor, Secret Of Life

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    Tom,
    It has been a long time since you have been on here, it is good to hear from you. This Wegener's crap does teach us a whole lot, about ourselves and others. It seems like you are etching out a life with what you have to work with. I also have COPD, with the Wegener's and it does make it very hard to be as mobile as one would like, even if you are not on full time O2. You are so right about looking around to see others that have a lot more limitations, you don't have to look to far to see it.
    Jana


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


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    Tom, try not to worry about the boy you saw.
    When I was 17 I was told that I wouldn't be leaving hospital alive. I'm now 38 and still battling.
    Having youth on your side gives you the best chance of survival and, hopefully, reversing damage.
    I really feel for you having the O2 continuously. I've been using CPAP since the start of this year which I moan about and I only use it during the night.
    Diagnosed April 1995

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