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Thread: Celebrate how far we have come!

  1. #91
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    Don't know if this is pertinent to your recent 'setback', but I was at Mayo a couple of weeks ago for what I considered an important appt. For 2 days prior and a week after, the crusty nose & some blood came back. Numbers weren't affected, but my stress level was...thus, I believe, the reaction. Remember everyone...there is no cure...so stress & other situations can create some of the more common WG reactions again. Best to all.
    Knowing how to think empowers you far beyond those who only know what to think. -NdT


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  3. #92
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    I am sorry drz. And Don. And Anne...

    Drz, I can get nose bleeds when the air is too dry or dusty or so, and not necessary out of active wg. I hope that by now you are doing ok...

    Don, you cant make troubles now that they let go of your leash (or how did you call it ? Pardon my English)..

    It reminds me, while I was with my sweet Phil in the hospital, although I told him not to make troubles while I am away, it turned out that the greatest troubles did happened while I was away...

    Anne, I know from facebook about your fractured bones. Not sure how much I can ask there, and also here, but if you feel like, please let us know more, and how are you doing so far...

    Love you guys. Take care please.
    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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  5. #93
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    Default Re: Celebrate how far we have come!

    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 1 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 and waning of residual symptoms but none serious enough so far to warrant RTX. I do use some Flonase Nasal spray for periods of more nasal bleeding and sometimes a little more extra prednisone meds. My kidney function has been amazingly stable for several years despite active type 1 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 I enjoy 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 on 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 and try to enjoy the moment.
    Last edited by drz; 04-07-2019 at 09:35 AM.
    Knowledge is power! Wisdom is using it to make good decisions!

  6. #94
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    Default Re: Celebrate how far we have come!

    Quote Originally Posted by drz View Post
    Where there is life , there is hope. So celebrate while you can.
    I totally agree with you, drz!
    Wonderfull to see you are doing so good again. Always inspiring to read your posts!
    Living with WG/GPA since june 2010...

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  8. #95
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    Default Re: Celebrate how far we have come!

    This is an amazing story

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  10. #96
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    Default Re: Celebrate how far we have come!

    It is now almost nine years ago since I got diagnosed with GPA. My story is detailed in several prior posts in this thread and some others. It was one of our departed members, Al, who convinced me to share it here many years ago.

    My situation is much the same as in my last post above. My flucuations in GPA were a bit more serious this year. I had to finally do a pred booster of triple dosage for a week and then taper back down over several weeks to my normal maintenance dosage of 5 mg daily. I had to go part way back up twice before I got back to my usual mainteance dosage. My symptoms were also somewhat different this time too.

    Besides the usual heavy fatigue and increased joint pain, I had a lot of brief heavy nose bleeds, eye inflammation, and jaw pain that I thought was one of my frequent dental issues. The dentist was uncertain it was a dental problem but on the second or third visit he ground down a cap on a back tooth to reduce pressure in that area. Then the pain moved around and when it went to my top teeth I figured out it was the sneaky Granny playing tricks on me again. It disappeared when I tripled my pred and came back when I tapered down to my usual dosage. I have only been back on usual mainteance dosage for a few days but it has not returned yet and no nose bleeds either so far and I hope this improvement holds for a while.

    One thing i experienced again was the uncertainty and lack of knowledge by most care givers on how to treat the symptoms. Fortunately I was able to finally figure some things out for myself before I got help from my usual GPA treating rheumatologist who has followed me since my initial treatment nine years ago. A local ENT did reassure me that the heavy nose bleeds were not related to any erosion in my septum or developing signs of saddle nose. He did not understand how GPA can cause frequent nosebleeds and and his advice on treatment was wrong so I ignored it. He said not to use the Flonase nasal spray since he said it would make nose bleeds worse but it did help me reduce the nosebleeds but the increased pred meds were most important.

    The dentist was baffled by my symptoms but did reassure me that he saw nothing to indicate another root canal was warranted but he was willing to refer me for one if thngs got worse even though he was uncertain would help me. It is interesting to me that part of increasing awareness for GPA to help get an earlier diagnosis is an effort to train more dentists to recognize the symptoms in order to get earlier referrals for treatment. I did my part to raise his awareness. For most of my doctors I am the only GPA patient they see so a lack of familiarity of our disease would be expected and the norm.

    Local GP's were uncertain I needed a steroid eye drop or if it was an inflammation or just dry eyes. I was uncertain too but used treatment for all three and the pain and inflammation decreased and vision clarity improved.

    Part of the struggle in adjusting to life changes brought on by damages from a serious attack of GPA is learning to accept your "new normal" and adjusting to it. As the serenity prayer states, the serentiy to accept the things I cannot change, the courage to change the things I can, and the wisdom to know the difference.

    I have found out in the past year since my last post that some things I had given up were possible on a limited basis. I have been taking Tai Chi classes for balance and my balance has actually improved some despite my increasing neuropathy from diabetes which impairs it more each year. I also took a class on balance issues which motivated me to try some thngs i had given up, so I took a ballroom dance class again and was amazed at how well I actually did in the class. Of course I had help from a younger, stronger, physically fit partner with great balance, my Tai Chi, teacher, who wanted to learn to dance, and we did very well. It was really fun to enjoy dancing again but unfortuantely finding another dance partner and opportunity to dance again will be very difficult and unlikely in my area. Ball room dancing seems another thing that has largely disappeared in our area. But they usually have community dance classes each year so I hope to do it again next year if not before.

    I also took a fly fishing class and with help of the teacher and guide I was able to actually fly fish again for short periods of time as long as I stayed on shore and had a flat and safe casting area. It was fun to fly fish again and maybe because I had the best guide or the most experience in fly fishing, I caught more fish than the rest of the class put together.

    My new BAHA seems even better than my old one so I am enjoying more concerts too even though over all my hearing is also declining with age.

    So years later despite advancing age limitations, and on going health issues that reoccur and the new ones that crop up, I feel my quality of life has actually improved. One of the benefits of aging is you learn to enjoy life exeriences more along with more gratitude for things you can still do.

    I feel some of the newer members have missed out in not having access and help from many of our older members who are no longer with us but a lot of their wisdodm and advice is still here in older posts. And for those of us who were fortunate enough to interact with them, their memories and advice still live on.
    Last edited by drz; 03-29-2019 at 12:35 AM.
    Knowledge is power! Wisdom is using it to make good decisions!

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  12. #97
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    Default Re: Celebrate how far we have come!

    Great news, drz!! Iím convinced that being as active as possible (mentally and physically) is a key to successfully living with wegs. Itís good to learn about fellow weggies who are making their new normal fun and healthy!!
    Pete
    dx 1/11

    "Every day is a good day. Some are better than others." - unknown

    "Take your meds as directed and live your life as fully as you can." - Michael Chacey, MD

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  14. #98
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    Default Re: Celebrate how far we have come!

    I have yet to put my story up. Just haven't wanted to use my brain that hard to look up dates and such.
    I firmly believe in what you guys are talking about. What keeps me going is getting out and seeing people. Since I can't walk outdoors (cold, dust, pollen) I go somewhere every day to walk in doors. I work on keeping upbeat as best I can, having smiles everywhere I go. Lack of energy makes it more difficult, but I'm not going to give up on seeing folks everyday.
    Take care!

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  16. #99
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    Default Re: Celebrate how far we have come!

    It was really appreciable that you shared a story, one must be celebrate even small happy moments of life and if its about your health a minor recovery is a a big moment to celebrate. If there's a life, there's a World !!

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  18. #100
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    Default Re: Celebrate how far we have come!

    Last week, I went to Disney World. I rented a scooter for myself so that I could keep up with the family. I blew my diet. Now I'm tired but happy.

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