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Thread: Living By Myself/Does anyone else?

  1. #31
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    Hi Nikki, I am finally at my parents house, I spent the nite with them last nite so I could use their computer. I was too tired last nite, but am up drinking my coffee and could not wait to tell you I got tickled about you telling me to run from the phone people, Yes, the do LOVE to charge us for every little thing! Ive got to look into changing my phone plan. ~~~I think its really great how you are handling your dz. Your blog shows me your talent for writing. That is so therapeutic. And the fact that your book is twice as long as you thought, thats very encouraging! I bought a special notebook to write my autobiography. I have had many things happen in my life (as we all have) and I would like to be able to help people through a couple things specifically ive been through, and write about how these things that were "terrible" at the time, turned out to be blessings in the long run. Of course you have to live as long as me to have some things come full circle and turn into blessings, but still, I do want to help people, I always have. I admire you, and I hope you dont look at this disease run your life. Im not really sure exactly what your daily sufferings are. The first 10 years of mine, I was sooo active, and I would have flare ups where I would have joint inflammations that were so extreme I would have to walk with a cane, and my husband and our best friend Chris who we rode Jet Skis with, and I would just laugh about me being young and using a cane and my husband would help me and we would go to the pharmacy and get my mega dose of prednisone. Then I would be good for 6 months, and we would be going jet skiing and to the beach every weekend. I was in incredible shape, these Jet Skis were not SeaDoos. They were stand up, no seat. You would have to use your whole body to ride these. So I fought wegeners, and never really thought about it much. I was young, in love, and my dz was in the background because thats where I put it. I took my meds, did what the drs said, but I just lived my life. My Dr told me that was very good for me, staying so active and taking care of myself. But now, I just feel tired mentally, because so much has changed. Now I want to turn it around and make my life a happy new chapter. You are encouraging me to get going on some things I just put off. Just because im 48 does not mean I cant be in decent physical shape. And the vision I have for my little house is getting sharper in my head. I am saving money, and that is a change, because before I didnt have enough money until my sister got me a little job. Its amazing what a little extra money will do, and cutting back on tv add on channels I dont need and things like that. Its a slow go, and I get discouraged when something comes up I dont want to do like find a new dr. or look for dental insurance, etc. But you have shown me if I stay focused, and think of the end result, it helps me keep going. OH, I forgot to tell you,,,, I am beginning to sketch ideas for jewelry for Weggies! I need to think of a recognizable symbol, like breast cancer has the pink ribbon. So im going to design one for all of US! Ill let you go now, Im going to get back on the computer before i leave Mom n Dads, and see whats going on. Gotta check on all my Weggie friends. I miss them all. Talk to you soon,

    Oh, BTW, about your pic. I laughed so hard about what you said. Now that I look at it, I see it so differently.....You dont look sad at all! You look very......hmmm.....SULTRY! Yes, very sexy!
    Last edited by Lilly; 02-09-2014 at 04:08 AM. Reason: forgot to add something
    Life is a Gift~ Lilly

  2. #32
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    I'm so glad you are feeling more positive and getting motivated. That makes me feel so happy inside to have helped you even if just a teeny tiny bit. I cannot wait to get to a point in this mess where I can continue with my normal life.
    I did find a trainer who works with women, and is a cancer survivor like myself, who runs this little group fitness thing and I am going to start seeing her. I will switch back to my other trainer when I am much stronger because he specializes in what I did before ... the real hard core training.
    I think I was really down because I was hit with the double whammy cancer and autoimmune. The cancer treatment made my Weg's fatigue 10000x worse. Then, the depression set in. I am trying to battle back against everything and I will. I know I will.
    I hope that I can finish this book (I haven't been in the right mindset the last couple of days) and actually see it published. Wow, I would feel on top of the world if that happened. We'll see what happens!!
    Keep looking up, eyes forward, we still have a LOT of life left to live.
    Officially Diagnosed 07/31/2013

    My blog: http://nikkinicolealison.com

    "It's no use going back to yesterday because I was a different person then" - Alice in Wonderland

  3. #33
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    Lilly, there is a lovely lady that creates jewellery for specific causes and all profits from her sales get donated to the actual illness or cause that the item/s were sold for.

    The Wegener's colour ribbon is Red.

    Below is the link to this ladys' jewellery. I have two of the Wegeners rings. They are made out of beads and swarovski crystals and are elastic, so basically one size fits all.

    Wegener's-Granulomatosis Awareness Ring
    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

  4. #34
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    Quote Originally Posted by mishb View Post
    Who have I forgotten......Anne, get out there and find Mr. Right
    OK, Michelle! Back atcha!
    Anne, dx'ed April 2011

  5. #35
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    Michelle, the WG ring and the others are awesome. I have saved the link in my bookmarks under "fun stuff". But it is obviously much more than that. Bless this lady for her generosity in donating a portion of her sales of these products.
    Anne, dx'ed April 2011

  6. #36
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    Quote Originally Posted by annekat View Post
    Michelle, the WG ring and the others are awesome. I have saved the link in my bookmarks under "fun stuff". But it is obviously much more than that. Bless this lady for her generosity in donating a portion of her sales of these products.
    If you like her fb page you will see all of the great stuff she does.
    Currently she is leaving hundreds of blankets on park benches for the homeless
    She also donates clothes and gifts to hospitals etc.
    Yes. bless her and many that are helping her to try and make a difference
    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

  7. #37
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    Quote Originally Posted by mishb View Post
    Lilly, there is a lovely lady that creates jewellery for specific causes and all profits from her sales get donated to the actual illness or cause that the item/s were sold for.

    The Wegener's colour ribbon is Red.

    Below is the link to this ladys' jewellery. I have two of the Wegeners rings. They are made out of beads and swarovski crystals and are elastic, so basically one size fits all.

    Wegener's-Granulomatosis Awareness Ring
    WOW, who is this amazing lady ? is she here in the forum ?
    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.

  8. #38
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    No, she is not on the forum......I couldn't see how should would have time
    She is a very busy lady - works fulltime and also makes jewellery and other care packages.
    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

  9. #39
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    Hi to all my weggie friends! I wanted y'all to know that test results from my Rheumatologist all came back good 😄 No blood cells in my urine, CXR was unchanged, ANKA was negative! Sounds like I'm in a remission!!! For some reason, my lethargy and low energy and pain in my face is still there,he said my body is still fighting the dz, right now my body is winning. He wants me to stay on my 5mg of prednisone, (every time I stop it completely, I seem to flare) and he said prob no rituxan infusan as we had scheduled! Yay!!! Also, my EENT did my post op sinus/eye check-up, and he said I look fantastic! No infection, my eye tubes are in the right place.......he shook his head and said "I don't know how u keep your nose so clean and handle those tubes in ur eyes, but ur doing a great job! He also checked my throat, .....no stenosis, throat looks great, vocal cords look good. 😊 I asked him why, when I clean my nose, along with the scabbing and crusting I get out, I also get out stuff that looks like soft cartlidge, it's white and has shape? He said...."I don't know what it is, but I can tell you that you do not have ANY cartlidge in your nose! It's an open cavity, with the tubes and the plastic holding up your nose" lol!!!! So whatever it is, I'm just gonna keep on cleaning! I just wanted to share. I love u all, and will talk to y'all after work today~
    Life is a Gift~ Lilly

  10. #40
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    The stuff that comes out of my nose often has shape, from where it was pressed up against the nasal cavity lining or sinus openings. IIt is not usually whitish, although maybe it sometimes can be, and I don't think it is cartilage, but thickened, built up mucus that has often been in there awhile. I think I still have cartilage, although my bridge has dropped, but I have never known where the cartilage that caved in went, if anywhere. I only know I have a hole in my septum. My understanding of the anatomy is quite limited, and no doctor has explained it to me really well. I guess I'm just supposed to look at the picture on the wall at my ENT.

    I'm sorry you have lost the whole inner structure of your nose, Lilly. That is pretty hard to imagine. You have a great attitude. I'm so glad all your tests came back so positive and you can think of yourself as in remission. That is awesome!
    Anne, dx'ed April 2011

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