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

[Alysia]

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]

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!

[Birdie]

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.

[drz]

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?

[Alysia]

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 ?

[spiritscript]

Alysia... I agree. The ER doctors can't/won't help! She needs help and support!

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 ?

[Birdie]

Alysia... I agree. The ER doctors can't/won't help! She needs help and support!

No, Debra needs an emergency room.

She has megga issues untreated for years while holed up and hiding in an apartment alone in denial.

She has never been diagnosed and needs a massive amount of health care NOW, not bits-n-peeces over a period of several months, which maybe she'll get and maybe not, if she shows up for the appointments and the unknown doctors don't suck, and she actually accepts the treatment for possibly incorrect diagnosis under those conditions... while living alone without any kind of support or help except to beg for transportation to all those appointments which are already far too late... and no way to pay for all that probably inefective health care cost... The only logical option is short term hospitalization to get control of her health, start treatment and get assigned follow-up doctors who are already involved. All that in just a couple days from today.

Nope... ER or Putin, take your pick Deb... (hint: Putin scares the hell out of me)

[Alysia]

Alysia... I agree. The ER doctors can't/won't help! She needs help and support!

Hi & welcome. ER at Nashua will not be good, I guess. BUT - ER in a decent hospital with wg experts in it, will be the best.
Deb, you need to find a way to get to the ER in Boston mass. They will be able to do all tests at once, CT, xr, etc. And to start treatment. Rtx is given only in hospital and better where they know how to give it.

[Mamabear]

I just moved from Keene NH about 50 miles or so away from her. I saw a rheumatologist there who diagnosed me with it, she is the only me that believed me, Boston didn't help but that was just me. She can call Cheshire Medical in Keene and ask for the rheumatology dept. my prayers are with her bless you all

[Alysia]

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.