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

  1. #41
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    I am so happy to hear that you are recovering quite nicely. I'm sure that it feels good to be able to get out more. It is sometimes almost a full time job managing all the complications, let alone the disease its self. It sounds like you do a really good job at it, keep up the good work. Take care of yourself and all the best to you!
    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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    You are awesome drz
    So many different issues over the years and you always have time to update us, and always make it sound like it's not so bad.
    I'm sure it's way worse than you portray.
    I'm so glad that things are working out and that you are recovering nicely
    Keep Smiling
    Michelle


    Live your life in a way that you wouldn't be ashamed to sell the family parrot to the town gossip - WILL ROGERS

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    Quote Originally Posted by drz View Post
    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.
    Glad you are doing better. I shed my boot last Thursday, and I know how you feel. I didn't know how to walk right after only 6 weeks in the plastic walking boot. Luckily, I was able to take off my boot to drive, and was pretty lucky to be able to go to work every day.

    Hope you continue to improve!!!
    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 drz View Post
    My broken ankle has healed enough that i can start walking on it again...
    it felt great to be able to park my scooter....




    I feel very lucky....my Wegs still remains in drug induced remission and hope it continues to stay that way for a long time.



    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."

    Wonderfull news, Drz!
    I'm so happy for you!
    Living with WG/GPA since june 2010...

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    Quote Originally Posted by MikeG-2012 View Post
    Glad you are doing better. I shed my boot last Thursday, and I know how you feel.
    Update: Boot is back on! I started having pain in the same area as the fracture and the foot doc told me to get back in the boot for a week, and he'll do another x-ray. So this is week 8, and I am really getting tired of this plastic monstrosity. <sigh>
    MikeG-2012

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


  7. #46
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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 did some PT to help strengthen my legs and improve my balance some to try avid future breaks. I also tried going off the generic Protonix but think I will have to go back on it since I now have worse gas and indigestion again. The Ranitidine didn't seem to work as well 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 05:00 AM.
    Knowledge is power! Wisdom is using it to make good decisions!

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    I am so glad that you are doing so well after all you have been through. I was also dx'd in 2010 and wow what a ride. Please continue to take good care of yourself. Thank you for your friendship and for the special things you share and information you add to this group.
    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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    We are blessed to have you with us, drz.. I am glad that you are doing much better.
    I love to read your posts... not only learning from you but also having that warm feeling in the heart that you create with your words...

    Thanks for remembering our friends who flied high... my beautiful Phil, my forever valentine, is watching over us all from his good place in the presence of Our Lord.

    Happy Valentine Day ♡♡

    FB_IMG_1487092054243.jpg
    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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  11. #49
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    Default Re: My third anniversary of my Weg diagnosis is today.

    This is duplicate of what i posted in another thread with similar theme but this thread also contains many of the good things mentioned in this post so it seems appropriate to repeat it here even though the title should now read eighth anniversary.

    I just checked and it is over a year since I posted any update on my anniversary status. I also looked over the whole thread which I do at these times. It reminds me clearly of some important things. First, I am very lucky to still be doing as well as I am at present. Two, life is great gift that we need to celebrate while we can. Many great people who help me with supportive encouragement on this forum are now gone and greatly missed. Three, tough times come and go and things often change.

    Most of the current readers don't know much about me but eight years ago I was getting ready to move to a rehab hospital after spending weeks in ICU and intubation after surviving a severe bout with the wicked Granny. I then went to nursing home for a few more months of rehab care to work toward a partial return toward a more semi- independent living situation. I have now been in my light assisted living situation for six and half years.

    During this time I have had a few operations to try repair some of the damage from Wegs and decades of type diabetes, various infections, a broken ankle from having weak bones, lot of dental work, and some other close calls like being hit by car walking down the side walk last summer. I spent a few anxious hours in ER that time but was greatly relieved to learn I had no broken bones in neck or back or concussion so if I could move enough to get dressed and eat dinner i could try go home. And I did.

    I am a high user of medical facilities and services. I often joke that my retirement job was become a full time health care consumer since I help support a dozen doctors at six different clinics. I did decide to drop the Mayo clinic from my list last year since I found out they were not very helpful last year when I developed cellulitis in my scalp near my BAHA site and was advised i would probably need IV antibiotics due to my poor immune system and numerous allergies to various antibiotics. Despite several past assurances they would see me ASAP at Mayo if I needed help they offered no help or even advice. I did later find a good infectious specialist who trained at Mayo at one of my clinics and he is located a lot closer. And he has been very responsive to my needs and concerns about various infections.

    I have been able to avoid RTX treatment so far but am reluctant to state it here so clearly since it seems such statements often seem to wake up the wicked Granny or sleeping Weg dog.

    I have some waxing waning of residual symptoms but none serous enough so far to warrant RTX. I do use some Flonase Nasal spray for periods of more nasal bleeding and some times a little more extra prednisone meds. My kidney function has been amazingly stable for several years despite active type diabetes. My nephropathy is progressive and keeps getting worse but i can still walk slowly with a wobbling gait for an hour or so if I take some rest breaks. I can still drive and like to go to concerts and lectures despite my severe hearing loss. I find my BAHA really improved the quality of my life and with a remote microphone and TV streamer to stream sound directly to my two hearing aids I can usually hear enough to appreciate or understand the gist of what is said.

    I spend a lot of time between medical appointments and phone calls trying to get diabetic supplies, setting up various needed appointments, and to get Medicare and my insurances to process claims correctly. That is almost a full time job by itself and usually very frustrating. But it has to be done and I feel fortunate to still have the ability and energy to be able to still do it since most of the other residents in my building can't.

    Some of the old regulars on here are gone and we only have their memories. Others improved enough to resume a normal active life again and are busy living it. For the newer readers remember that with proper treatment things with Wegs generally get better. For those of us who survived some rougher times, rejoice and celebrate how much better things became. For those currently in a rough patch, remember that better times can come again. Where there is life , there is hope. So celebrate while you can.
    Knowledge is power! Wisdom is using it to make good decisions!

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  13. #50
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    Default Re: My third anniversary of my Weg diagnosis is today.

    This is the thread I started 7 years ago and kept up for many years but then started posting mainly in the Celebrate How Far we Come thread. It has some info not contained in other thread so it might be interesting for some readers who want to learn more about the history of many members.

    Re: Celebrate how far we have come!
    It has been 10 years since I joined the forum. At that time I was recovering in a nursing home after spending a few months earlier in a couple of hospitals.

    I reread all of the posts in this thread that I started many years ago. It brings back a lot of memories and feelings. One obvious difference is that 10 years ago before Facebook and other social media became a big source of support, this forum was basically the only game in town and there was a lot more activity on it. You can notice that in the early years there often would be several posts even on the same day. There is also a very impressive amount of wisdom noted in many of the posts here that people contributed in the past.

    Of course one of the sad things about rereading this thread is many of the brightest lights that were present in the forum years ago like Jack, Al, Light Warrior, Phil, and others are gone. Many others who were active years ago have dropped out and hopefully most are still doing okay.

    Many things are different today for everyone because of the pandemic. But 10 years ago my situation was virtually the same since I was sequestered in the nursing home due to my very suppressed immune system from the high dosage of immunosuppressant drugs that I was taking. I had to eat alone and was not allowed to go to any group activities. So it is sort of ironic that the more things change, the more similar they can become.

    Like many people on this forum I am considered to be at a very high risk of having a serious reaction if I develop Covid-19. I still take maintenance drugs which suppress my immune system and have had several infections in the past months including pneumonia and bronchitis and sepsis which apparently have created some additional damage to my lungs which were heavily damaged from the wicked granny 10 years ago. Plus I have type I diabetes and kidney damage and am considered well into the high risk of older people because of my age.

    I recently read a study where people age 75 and over who had diabetes had a 80% death rate within a week after being diagnosed. So with all the additional risk factors I have I can understand why my internist told me that I am the poster child for the most vulnerable patient he has. So of course I have a lot of anxiety about catching SARS-CoV-2 and developing Covid-19. So I tend to be very vigilant and wear a face shield and mask any time I have to go to the hospital or medical facility which seemed to be the safest places since everyone there is wearing a mask.

    Most of my social contact today is by phone or text messaging and emails with an occasional zoom meeting or video chat. I am currently waiting to start a televisit with the doctor who has followed my treatment for the wicked granny since I was released from the hospital over 10 years ago. At that time I had my choice of picking the kidney doctor, the lung doctor, or the rheumatologist and I think I was lucky to pick the last one since the other two left the practice years ago.

    For the first few years I was also in the research study at the Mayo Clinic with Dr. Ulrich Specks and that help me learn a lot about this weird disease and how to manage it.

    My feelings of gratitude for my good luck to still be here 10 years ago are even greater today given the passage of time and the high risk currently present from the Covid-19 pandemic sweeping the world. I recently lost one cousin to Covid-19 and one younger cousin to cancer. In my state of Minnesota over 80% of the fatalities have happened in nursing homes or other congregate care facilities like the place where I currently live. I have been in this light assisted living apartment almost 10 years which is attached to a nursing home and regular assisted living program. Our facility has been virtually shut down for several months with restrictions on visitation and precautions like screening the staff for temperatures every day they come to work. We have all been tested three times in the past month and so far we have been fortunate that only one staff person has tested positive and that person had never worked in this building.

    At the present time I feel my GPA symptoms are quite stable which makes me happy. I was able to get my maintenance prednisone medicine back down to 7 1/2 without any significant increase in my residual symptoms and hope I can continue to reduce it further till I get back to the level of 5 mg a day which seemed to work for me okay for several years. My azathioprine dosage has remained constant and is only reduced when I end up in the hospital needing IV antibiotics for pneumonia, sepsis, or some other infection. They also increase my prednisone meds during these times and it has been a sxztruggle to try get back down to lower dosages.

    The current pandemic may have downsized our life and limited our social contacts even more than for most people. But many of us have been through some tough times when we were first diagnosed or treated for a serious flare. So if we are doing better today than in the past we need to focus on how lucky we are to have improved and still be here to enjoy the life we currently have and try to make the most of it while we can.

    Best wishes to everyone and hope for some effective treatment and vaccine to help end the current pandemic. Back in 1918 the flu epidemic was far more serious in the number of fatalities than our current pandemic and millions of people lost their lives all around the world. But things did eventually get better and most likely they will again soon.

    DrZ
    Knowledge is power! Wisdom is using it to make good decisions!
    Last edited by drz; 07-10-2020 at 04:52 AM.
    Knowledge is power! Wisdom is using it to make good decisions!

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