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Thread: Celebrate how far we have come!

  1. #101
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    Default Re: Celebrate how far we have come!

    Drz, I am so glad you came out of your flair still kicking. Like you, I have to sometimes manage my own flairs, not advisable without Dr agreement.I also am at 9 yrs out and I really need to get back to doing fun things.I hope that you continue with your dancing and TiChai! 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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  3. #102
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    Default 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. Spechs 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.

    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.
    Last edited by drz; 07-16-2020 at 06:18 AM.
    Knowledge is power! Wisdom is using it to make good decisions!

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  5. #103
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    Default Re: Celebrate how far we have come!

    Goodness Me DRZ you brought back so many memories with your post today. Yes its been a long time since I frequented this amazing Forum which when i was diagnosed 12 years ago was an absolute god send. Your mention of all those bright shining lights who imparted such good information and were always there with a helpful word of encouragement when we were feeling at our wits end, made me feel sad again at their loss.

    Yes its true that you had to visit the forum every day to keep on top of all the new posts and perhaps the growth of Facebook and other Forums has been to the detriment of this one, which in my humble opinion is, and always will be the best!

    Its bizarre in this current situation that so many people are now experiencing what us Weggies have to go through, i.e having to be constantly aware of what we touch, is anybody close by sneezing or coughing, welcome to our world!

    What has excited me though here in the UK is the huge amount of research going into a Vaccine for Covid - 19 and its relationship to the Immune System. We are led to believe that all being well we could see something tangible in 3 months, fingers crossed! But also its the other discoveries that are so tantalising for us; I'm positive that we can benefit from all the resources currently being deployed.

    Thanks again DRZ, its a real comfort to read your post and to see old friends like Alysia, Pete, Gilders et al still making nuisances of themselves!

    Take care everyone and keep smiling (it makes people wonder what your up too!)

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  7. #104
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    Default Re: Celebrate how far we have come!

    Wow, what a thread! And so good to see you here again, Geoff! Thanks, drz, for starting this and keeping it going. It sounds like you've gotten the upper hand over the wicked granny, and I hope she stays out of sight. I joined the forum 9 years ago at the time of my diagnosis, so I have the same memories of those we have lost, each of whom stood out in a unique and endearing way. I do see some other old members on Facebook, which has a different sort of emphasis, more conversational about other things than just the disease. But I agree that this forum is the best, and am happy to see new members come here first. The other day I bumped into Sangye on Twitter and she seems to be doing well. I don't go there often, but she is quite active there. Well, I haven't yet gone to the beginning of this thread to read it through, but I intend to. I hope that everyone will stay safe and well, and enjoy the summer!

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

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  9. #105
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    Default Re: Celebrate how far we have come!

    That was such a good read DRZ. I hope you keep safe.
    You are correct about how busy the site used to be. I just checked my introduction thread and had many replies soon after posting it (including from you).
    I mentioned in that post about a US road trip that I was determined to complete. 7 years on and I'm still trying to make it happen.
    Diagnosed April 1995

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  11. #106
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    Default Re: Celebrate how far we have come!

    Wow, Pete @gilders, it would be so cool if you took a road trip in the US, and maybe into Canada, too. I guess it will be awhile, with Covid 19. But when you do, if you came through my area of the Pacific Northwest, I'd be happy to join you for a cup of coffee or whatever. Meanwhile, hang in there, as we are all trying to do.

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

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  13. #107
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    Default Re: Celebrate how far we have come!

    Congratulations on 10 years Dr. Z. Keep letting us know how you are doing. I hope you have an Oximeter handy: it is so necessary for all of us to monitor our SPO2. I feel so fortunate given this monster hit my lungs so hard that 2 years later I can still reel off 95%+ numbers (I even sometimes get a 99 on occasion). I just watched a video of a popular youtube personality "Bald and Bankrupt" who didn't go to the doctor when his breathing problems started, and by the time he got there he was in the low 70s. At that point his organs were shutting down. Here is his story if you are interested:

    https://www.youtube.com/watch?v=clscC120ZQM

    This pandemic has me down mentally, as does the state of the world in general. However, the fight I have has never been stronger, and I see folks lasting so long with this disease and it gives me hope. I've made 2 years myself: I need 10 more to see my baby girl graduate high school. I'm hoping I can find the strength and discipline necessary to see that day (the diet, regular exercise, stress management, proper sleep, social distancing, regular monitoring, proper medical treatment are so necessary).

    Cheers: keep checking in to let us know how you are doing.

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  15. #108
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    Default Re: Celebrate how far we have come!

    Quote Originally Posted by drz View Post

    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.
    That is great news, drz!
    Congratulations also on 10 years, you really came far.
    Living with WG/GPA since june 2010...

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