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Thread: heart breaking story, posting for a friend. can we help her ? please ?

  1. #1
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    Default heart breaking story, posting for a friend. can we help her ? please ?

    Dear friends.
    few days ago I got here a pm from a forum friend, debra, who never posted. she is just reading. during our correspondance she told me her sad and heart breaking story. she gave me her permission to post it here. she wanted to post in order to help others and to warn them. but she lost hope. she lives alone and has no suppprt. she lives in Nashua, NH. this is a link for her profile, if anyone will want to send her pm:
    http://www.wegeners-granulomatosis.c...ers/debra.html
    I will now post her story on this thread in the next post. can we, please, help her ?
    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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    Debra's story:


    I gave myself this disease, Back in late 2010 I put this toxic crap all around my apartment that someone gave me in an attempt to prevent bed bugs, because my neighbor got them and I was terrified! Stupid, stupid I know! It's silica! Also bentonite clay! I didn't know until it was too late! I know for a fact this caused it! About 3 to 4 months later, I started losing weight, fatigue etc. But it stayed silent till day surgery in May 2012 ,then all hell broke lose! Eye scleritis, leg burning, dizzyness with numbness strawberry gingervitis, nose pain, and bleeds. Change in shape of nose but not complete collapse. Teeth coming lose! This took all my natural teeth! With the gum! And bone! U can see bone when I pull down my lip. Kidney problems, hearing would come and go, with fluid coming out. Heart tachycardia. Wow,I know I'm forgetting alot! Oh my hair fell out too, with no treatment! So this disease can do that too. I noticed on the group people thought medicine caused it. Both I guess, but I have never been treated! I will explain. So while all this happening I saw every kind of doctor out there! No help! Nothing! All looking at individual symptoms rather than all happening at once. Finally I just couldn't do it anymore, so I came home closed my door, knowing I was going to die, because I figured it out myself a few months after the onset. Looking up scleritis of the eye. Then I found the group where I lurked for about a year and a half. I left for a year, because I was terrified! And I needed to find God. Recently came back was led to post to u, through Phil. I never posted, don't even know how! So I went to your profile because what u did was so special to me... So I didn't leave this apartment for two years after getting no where with doctors. Had a delivery service bring food, etc. After two years, my old therapist called who when I got sick, was coming here to my apartment, and I thank God because she witnessed all this. So I had cut her out for about eight months, just reached my break point. So my therapist, Mary called out of the blue, another story there. So she said can I come by, and at this point my nose had collapsed in part, not all, all teeth gone, gum, bone, hair etc. ,so I didn't want to be seen! I finally agreed, and when she saw me she knew! So she begged me to go back to doctor, and guess what? Yup now the doctor believed me! Now that its too late! I tried so hard to tell every doctor but they blew me off! So now its through out my whole body, even liver. Just reached lungs, a big fear! Hearing in left ear about forty percent gone. I would have lost my mind for sure, but God is so awesome! So I'm ok and at peace with going to be with the Lord, but this disease scares me! Alot! I'm talking the pain, and how it will take me. Feel free to post because maybe it can help someone.

    Forgot to tell u, the autoimmune doctor told me, oh its rare, u probably don't have it and if I treat u, the treatment will kill u! What's not treating going to do!!! Unbelievable! Doctors here in Nashua nh, are bad! And because of my insurance I get horrible care! I have poor man's insurance Medicaid, Medicare from disability. I noticed in UK and Canada they get a lot better care! Not here!
    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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    Quote Originally Posted by Alysia View Post
    I will now post her story on this thread in the next post. can we, please, help her ?
    Alysia,

    Sounds to me like she needs an abulance taking her to the nearest Emergency Room.

    All she needs to do is dial 911. They will respond even if she doesn't speak into the phone.

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    Could her therapist help her find a good doctor so she could get some medical care that she obviously needs? Maybe in a near by bigger city like Boston?
    Knowledge is power! Wisdom is using it to make good decisions!

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    Thanks Birdie and drz.
    Birdie, I am not sure how they can help her in the ER. she needs a wg expert.

    does anyone around knows about a wg expert in her area ? how can she make it with her medical insurance ?
    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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    friends, I am only the "messenger". debra is reading this thread. actually she is very excited and a bit stressed from what you will be writing to her. so you can write here straight to her, ok ? I mean, come on, lets give her our world wide famous warm welcoming of new friends to our wg family.
    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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    Quote Originally Posted by Alysia View Post
    friends, I am only the "messenger". debra is reading this thread. actually she is very excited and a bit stressed from what you will be writing to her. so you can write here straight to her, ok ? I mean, come on, lets give her our world wide famous warm welcoming of new friends to our wg family.
    now, since dr. Phil is not around, I will write in his name:

    Hi debra. welcome to our family. we are here for you. we would love to hear more about you. You can come to us with absolutely anything, and I mean ANYTHING. medicare sucks. sorry to hear about that.
    you need to find a wg specialist and start treatment asap. at the end of the day you will have to be your own best doctor.

    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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    now, one from me:

    Dear Debra, welcome to the forum. I am glad that you agree to let us know you, and I hope that we will be able to help you to find a decent doc, to start treatment and to feel better. I hope that you can find more friends here and be less alone. you are sweet lady and you deserve the best.

    maybe you can try to post here ?

    at the bottom of the page it is written: reply to thread.
    press on it.
    then you will get new screen with big square in the middle. you can type inside the square. when you finish look at the bottom of the page and press "submit reply".
    sending many hugs, hang in there.
    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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    Alysia you're very sweet! Birdie,i love you're writing style. Drz I feel I know u! I had been lurking since 2012 and registered in 2013 so I could veiw profiles. I wanted to see if people listed occupations hobbys ect. I felt like I knew jack,as I read so much of him. I loved al and was here when he went home to be with the Lord. Al was a great speaker Realy captivating. I had to leave for a while and find God. I came back and saw sweet Phil was taken home. I loved him,always first to welcome people. I laughed because Phil had the guts to photograph the stuff that comes out of you'rewas you did for him,so reached out to tell u,and here I am... I am familiar with the specialists in Boston because of this group. Ok so I can no longer see my own response guys,I'm using cell internet and it won't let me see what I've wrote so far! This is what I was afraid of. Home computer is not up,as I had a flood in my apartment and need to repair some electrical outlets ect. I will try posting back the rest later. Please forgive typos as I can't see what I've written! Thank u all and I will try back..... Deb.,Dr monarch,and peter Merkel who I believe has moved on? These doctors do not take my insurance. Medicaid,Medicare. More Things are very different here guys,then Canada and the UK. My illness had progressed very fast and doctors where a complete abomination to me... Trust me I tried! Hard! I had also been to the er moved at what nose with this crazy autoimmune disease! I remember you,Alysia when you joined. I

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    Sorry guys,this is why I asked Alysia for help! I can't autocorrect and my words are writing on top of other words! I have to do quick responses only. Wrote a response and I powered off. Frusterating. I will try back later,as this is like my third time trying to aplogize for the jumbled up mess I'm posting under! Deb.

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