Re: How have you coped getting on with life?

[Guest guest]

Dear Kihunrc,

My heart goes out to you as you express what so many of us have been

experiencing. It is tough to know for sure if we are contagious or

not. Whatever bug I have had for the past two years has not been

contagious to others in my circle of family and friends, co-workers

or neighbors, thank God! (and I ask them periodically if they have

noticed any problems) But I know that feeling of being uncomfortable

whenever going to anyone's house and not wanting to sit on their

furniture or use their bathrooms, etc. A tough thing for me has been

giving up holding the pets and babies of friends. I have avoided

that for sure.

If it is any consolation, I spoke with Ginger Savely (P.A.) in San

Francisco and I asked her if she (or her staff) worries about

catching this from their patients. (She also treats Morgellon

patients) and she said after several years of treating people with

this or similar diseases, that she doesn't think this is transmitted

with casual contact and doesn't use gloves or other precautionary

measures when treating her patients. Perhaps this affliction can be

likened to Lymes Disease whereby the person would have to be bitten

by the actual mite to be given this condition. (theory only of course)

As for a social life, many of us with this affliction are

asking, " What is a social life? " . To cope with this socially, I

still plan a fun event at least once a week (if I have any time left

after work, cleaning, laundering, etc.) Even if I have to go to a

concert or show by myself, I still go just to get out of the insanity

of it all if only for just a few hours. I think we have to do this

for ourselves to keep the depression at bay.

I do thank God that we also have this forum to be able to vent and

share our ideas. It has been a real God send for me. The group is a

wonderful, group and supportive. Keep the faith, 'Ki'. I know with

God's help and the group support, we can get past this. Many have

and that is real inspiration for the rest of us. Take care.

Lady Dee

-- In bird mites , " kihunrc " <kihunshin@...> wrote:

>

> The past month has been the toughest time of my life, literally. I

> can't remember another time when I was so stressed, worried, and

> exhausted. You see, I'd been so frantic about cleaning, spraying,

> vacuuming, and doing laundry, that they have become my life. I'm

> sure all of you can relate. Fortunately, it was good timing that I

> had been allowed to telecommute for work the last few weeks (for

> unrelated reasons), which relieved me of the stress of me possibly

> infecting others at work. My social life has come to a nil as I

just

> decline invitations to anywhere that are not in public settings

> (excuse: " oh I'm busy " or " I'm not feeling too well " ). I have not

> stepped into anyone's home since. I now get very paranoid whenever

> I see someone near me scratching. You all know what I mean... It's

> stressful!

>

> Ppl closest to me know what I'm going thru and have advised me that

> life cannot come to a grinding halt in times of adversity. We must

> adjust and keep moving.

>

> Having said that, I'd like to know how others are coping or have

> coped with this. How are you maintaining your social life? Your

> work life? Going thru this yourself is absolute hell but aren't

you

> worried about infecting your family, friends, and co-workers? I

> take the necessary steps when going out but no matter how much I

> bathe or launder (and store in plastic bags) I still may

unknowingly

> carry bugs over to other ppls homes or cars right? I don't think I

> can deal with the stress and guilt of knowing that I have infected

> another person/home. It is extremely depressing and lonesome. I

> just thank God that I have a loving, supporting family.

>

> Here's what I wonder about all the time. Surely I can't be the

only

> one carrying these things! How about the several other hundred ppl

> at work in my building? Am I the only one inflicted with this?

> Howe about all these chairs we share in conference rooms? How

about

> when I ride airplanes? As much as I fly, I've never " caught "

> anything (other than a common cold). How about when I go to

> church? Several thousand attend and use the chairs. Someone else

> must be carrying something, right?!?! How about everytime I go out

> to restaurants. Movie theaters. Or when I'm shopping for clothes -

> am I to assume that everyone who's tried something on before me was

> clean? (I've not clothes shopped since)

>

> My sister is a school teacher and many of her kids are

> underprivileged. She reminds me that surely these kids have

brought

> many unknowns into class in her 10+ years of teaching - the point

> being, you can't keep worrying about others like that and if

someone

> else gets infected, that's unfortunate but that's life - to which I

> quickly counter that what I'm going thru right now is the last

thing

> I want anyone to go thru, especially my own sister!

>

> How are you coping with this and maintaining " life " ?

>

> kihun

>

> PS - this forum is just WONDERFUL. I absolutely thank each and

> everyone here!

>

[Guest guest]

Hi Kihun,

Coping with this is hard and I myself have often wondered the same things. What I have noticed from living in my last place where the infestation started, is that after I had things sprayed and the place felt fine for a bit (it wasn't) some of my friends had been over and uneffected. My b/f has been in it for 4 months now and totally uneffected. I think once these beasts have chosen who they like they tend not to stray. I was just commenting to Ty the other day about how funny it is that bird mites can travel a great distance to find food. It seems strange that they are die hard loyalists. I mean we turn our home into the most unaccomadating place possible. Many have died bacause of it and I am sure they know it because they sense eachothers harmons and still they try to stay with me and the rats.

Amazing!!!

Honestly, I think most not all, but most of the people around us our safe for that reason alone. I keep my amun deficient friends away though.

J.

From: kihunrc <kihunshin@...>Subject: How have you coped getting on with life?bird mites Date: Tuesday, September 30, 2008, 10:02 AM

The past month has been the toughest time of my life, literally. I can't remember another time when I was so stressed, worried, and exhausted. You see, I'd been so frantic about cleaning, spraying, vacuuming, and doing laundry, that they have become my life. I'm sure all of you can relate. Fortunately, it was good timing that I had been allowed to telecommute for work the last few weeks (for unrelated reasons), which relieved me of the stress of me possibly infecting others at work. My social life has come to a nil as I just decline invitations to anywhere that are not in public settings (excuse: "oh I'm busy" or "I'm not feeling too well"). I have not stepped into anyone's home since. I now get very paranoid whenever I see someone near me scratching. You all know what I mean... It's stressful!Ppl closest to me know what I'm going thru and have advised me that life cannot come to a grinding

halt in times of adversity. We must adjust and keep moving.Having said that, I'd like to know how others are coping or have coped with this. How are you maintaining your social life? Your work life? Going thru this yourself is absolute hell but aren't you worried about infecting your family, friends, and co-workers? I take the necessary steps when going out but no matter how much I bathe or launder (and store in plastic bags) I still may unknowingly carry bugs over to other ppls homes or cars right? I don't think I can deal with the stress and guilt of knowing that I have infected another person/home. It is extremely depressing and lonesome. I just thank God that I have a loving, supporting family.Here's what I wonder about all the time. Surely I can't be the only one carrying these things! How about the several other hundred ppl at work in my building? Am I the only one inflicted with

this? Howe about all these chairs we share in conference rooms? How about when I ride airplanes? As much as I fly, I've never "caught" anything (other than a common cold). How about when I go to church? Several thousand attend and use the chairs. Someone else must be carrying something, right?!?! How about everytime I go out to restaurants. Movie theaters. Or when I'm shopping for clothes - am I to assume that everyone who's tried something on before me was clean? (I've not clothes shopped since)My sister is a school teacher and many of her kids are underprivileged. She reminds me that surely these kids have brought many unknowns into class in her 10+ years of teaching - the point being, you can't keep worrying about others like that and if someone else gets infected, that's unfortunate but that's life - to which I quickly counter that what I'm going thru right now is the last thing I want

anyone to go thru, especially my own sister!How are you coping with this and maintaining "life"?kihunPS - this forum is just WONDERFUL. I absolutely thank each and everyone here!

[Guest guest]

Hi K,

I am very sorry to hear about your mite problem and the burden you are

bearing. Yes, we all sure can relate. You must be a wonderful and caring

person to be so considerate of others you come in contact with everyday.

It can seem overwhelming.

Coping is one of the toughest aspects of this. That is why this issue

needed to be address on the website (mental anguish). Because for me,

that was as hard to deal with as the physical torment that goes with

this.

Music is one of the things that sustains me. I am a musician and music

is a good outlet for me. Prayer is also, even though my prayers for

deliverance have never been answered, at least I can pray for others and

hope it is doing some good.

You should not hesitate to be around others. Bird mites tend to be less

active in the day, and so it should not be much of an issue with the

cleaning regiment. Keep a lint roller and small spray bottle handy. I

even keep a cordless vac in the car. I use these all the time if

necessary.

Hang in there, it does get better.

Tim

>

> The past month has been the toughest time of my life, literally. I

> can't remember another time when I was so stressed, worried, and

> exhausted. You see, I'd been so frantic about cleaning, spraying,

> vacuuming, and doing laundry, that they have become my life. I'm

> sure all of you can relate. Fortunately, it was good timing that I

> had been allowed to telecommute for work the last few weeks (for

> unrelated reasons), which relieved me of the stress of me possibly

> infecting others at work. My social life has come to a nil as I just

> decline invitations to anywhere that are not in public settings

> (excuse: " oh I'm busy " or " I'm not feeling too well " ). I have not

> stepped into anyone's home since. I now get very paranoid whenever

> I see someone near me scratching. You all know what I mean... It's

> stressful!

>

> Ppl closest to me know what I'm going thru and have advised me that

> life cannot come to a grinding halt in times of adversity. We must

> adjust and keep moving.

>

> Having said that, I'd like to know how others are coping or have

> coped with this. How are you maintaining your social life? Your

> work life? Going thru this yourself is absolute hell but aren't you

> worried about infecting your family, friends, and co-workers? I

> take the necessary steps when going out but no matter how much I

> bathe or launder (and store in plastic bags) I still may unknowingly

> carry bugs over to other ppls homes or cars right? I don't think I

> can deal with the stress and guilt of knowing that I have infected

> another person/home. It is extremely depressing and lonesome. I

> just thank God that I have a loving, supporting family.

>

> Here's what I wonder about all the time. Surely I can't be the only

> one carrying these things! How about the several other hundred ppl

> at work in my building? Am I the only one inflicted with this?

> Howe about all these chairs we share in conference rooms? How about

> when I ride airplanes? As much as I fly, I've never " caught "

> anything (other than a common cold). How about when I go to

> church? Several thousand attend and use the chairs. Someone else

> must be carrying something, right?!?! How about everytime I go out

> to restaurants. Movie theaters. Or when I'm shopping for clothes -

> am I to assume that everyone who's tried something on before me was

> clean? (I've not clothes shopped since)

>

> My sister is a school teacher and many of her kids are

> underprivileged. She reminds me that surely these kids have brought

> many unknowns into class in her 10+ years of teaching - the point

> being, you can't keep worrying about others like that and if someone

> else gets infected, that's unfortunate but that's life - to which I

> quickly counter that what I'm going thru right now is the last thing

> I want anyone to go thru, especially my own sister!

>

> How are you coping with this and maintaining " life " ?

>

> kihun

>

> PS - this forum is just WONDERFUL. I absolutely thank each and

> everyone here!

>

[Guest guest]

I agree that this group is the best thing that has happened to me re

the critters since the mid 90's when I got them. Incidentally, I

think I have narrowed down when and how I got them, it was after I

wore my turkey hunting clothes into the den and sat in my regular

recliner, the same one I curled up in every night in my PJs. Don't I

wish I hadn't heard that news item I just couldn't wait to check

out!! Another time I got my first turkey and of course carried it out

over my shoulder. As it cooled, the--you guessed it--bird mites got

on me. However, I think it was sitting in the recliner that did it.

My ex never did that, we normally got those buggy clothes off in the

wash room on the way in, and ditched out boots outside.

That said, it leads into how I have coped...initially not well.

Suicidal (as I hear many others also experience), depression, anger,

the whole shooting match. However, I had kept all my hunting gear

when I divorced my first hunting partner even after I remarried a

nonhunting man, and when a male friend asked what was I waiting for,

some man to take me to the woods, I thought, he's right. And I have

loved hunting again now, more and more on my own, by myself, over the

past 3 years. Of course sitting still and concealing the scent of all

my concoctions both present huge challenges for a bow hunter!!!

Haven't hunted this year due to illness and death in family, but may

try to catch the late season. However, my priority now that I have

some hope (thanks to all of you) for getting rid of these things

(they are eating me up right now, the sulfur mixture I made up for my

scalp is making them crazy) is to get rid of these things!!!!!

I also took up writing and have been published (but not paid by) some

women's hunting websites.

In other words, I finally accepted that I couldn't just wish these

things away, that until I found an answer either via my own

experiments or online, I had to do the best I could to live and be as

happy as I could in spite of them. Otherwise, why live? Over time I

had developed protocols that, except for days like today (about every

8th and 9th day), allow me to LIVE WITH them, so it was time to

realize they might always be with me, and if I was going to have a

life and enjoy it at all, I better get with it.

I stay out people's houses except when I must go to my mom's. I keep

my necessary visits very very short.

I developed livingwithcritters dot com, then found this group, my

protocols began evolving even more rapidly due to the amazing input

from the other members, my website became partly obsolete, and I'm

not going to update it till I can say conclusively that something has

worked to get rid of them for me. Easier still would be just to

replace what I have there with a link to this group!

A short while ago I started a new group that I haven't finished

configuring yet, and there I intend to put the compilation articles I

create for myself from the posts here plus whatever comes up that

seems like a " silver bullet " as I heard one of you say :-)

I need to get on the stick and put that link up if I do nothing

else...should have some time to contend with my webhost this weekend.

I now have 7 or 8 critter cartoons up at

http://community dot webshots dot com slash user slash

livingwithcritters

(of course, substitute the usual period for " dot " and / for " slash " )

This also includes one I created a couple of nights ago just for Adam

after he said he wanted to live in a treehouse in a tea tree... and

two I created years ago when I was first aware the problem was on me,

and was wearing garbage bags over my shoes held up with (constantly

popping!) rubber bands.

Humor helps me tremendously, giving me perspective, relieving my

stress, and connecting me with you, all of you.

Let me know what you think.

livingwithcritters

> >

> > The past month has been the toughest time of my life, literally. I

> > can't remember another time when I was so stressed, worried, and

> > exhausted. You see, I'd been so frantic about cleaning, spraying,

> > vacuuming, and doing laundry, that they have become my life. I'm

> > sure all of you can relate. Fortunately, it was good timing that I

> > had been allowed to telecommute for work the last few weeks (for

> > unrelated reasons), which relieved me of the stress of me possibly

> > infecting others at work. My social life has come to a nil as I

just

> > decline invitations to anywhere that are not in public settings

> > (excuse: " oh I'm busy " or " I'm not feeling too well " ). I have not

> > stepped into anyone's home since. I now get very paranoid whenever

> > I see someone near me scratching. You all know what I mean... It's

> > stressful!

> >

> > Ppl closest to me know what I'm going thru and have advised me

that

> > life cannot come to a grinding halt in times of adversity. We must

> > adjust and keep moving.

> >

> > Having said that, I'd like to know how others are coping or have

> > coped with this. How are you maintaining your social life? Your

> > work life? Going thru this yourself is absolute hell but aren't

you

> > worried about infecting your family, friends, and co-workers? I

> > take the necessary steps when going out but no matter how much I

> > bathe or launder (and store in plastic bags) I still may

unknowingly

> > carry bugs over to other ppls homes or cars right? I don't think I

> > can deal with the stress and guilt of knowing that I have infected

> > another person/home. It is extremely depressing and lonesome. I

> > just thank God that I have a loving, supporting family.

> >

> > Here's what I wonder about all the time. Surely I can't be the

only

> > one carrying these things! How about the several other hundred ppl

> > at work in my building? Am I the only one inflicted with this?

> > Howe about all these chairs we share in conference rooms? How

about

> > when I ride airplanes? As much as I fly, I've never " caught "

> > anything (other than a common cold). How about when I go to

> > church? Several thousand attend and use the chairs. Someone else

> > must be carrying something, right?!?! How about everytime I go out

> > to restaurants. Movie theaters. Or when I'm shopping for clothes -

> > am I to assume that everyone who's tried something on before me

was

> > clean? (I've not clothes shopped since)

> >

> > My sister is a school teacher and many of her kids are

> > underprivileged. She reminds me that surely these kids have

brought

> > many unknowns into class in her 10+ years of teaching - the point

> > being, you can't keep worrying about others like that and if

someone

> > else gets infected, that's unfortunate but that's life - to which

I

> > quickly counter that what I'm going thru right now is the last

thing

> > I want anyone to go thru, especially my own sister!

> >

> > How are you coping with this and maintaining " life " ?

> >

> > kihun

> >

> > PS - this forum is just WONDERFUL. I absolutely thank each and

> > everyone here!

> >

>

[Guest guest]

Ki

In the beginning I did not deal with this very well. I wouldnt hug

my girls, or leave my house except to get supplys....I focused on

this 100% will all my thoughts and energy. I didnt laugh, I didnt

have fun with my children, I cried all the time, I wouldnt sleep in

the same bed as my spouse....I also told far to many people about

this, thinking that what ever it was was highly contagious and that

they all needed to be warned. When no body ever did catch this from

us, but boy did we loose most of our friends over it.

So my suggestion is this....keep on living....like lady dee

said....do something that you love, spend time with your friends and

family in neutral environments, get out and exercise to ward of

depression and get your immune system pumped up....pray and keep

your faith....

and dont worry about those things which you can not control.

But the best advice I can give is know that you will see the end of

this, you will get through this! It sounds like you have a wonderful

family, so lean on them for support because you need it right now.

Do not feel alone, because you are not!

z

[Guest guest]

Ditto!

Z... I could NOT have said it better!

>

> Ki

> In the beginning I did not deal with this very well. I wouldnt hug

> my girls, or leave my house except to get supplys....I focused on

> this 100% will all my thoughts and energy. I didnt laugh, I didnt

> have fun with my children, I cried all the time, I wouldnt sleep in

> the same bed as my spouse....I also told far to many people about

> this, thinking that what ever it was was highly contagious and that

> they all needed to be warned. When no body ever did catch this

from

> us, but boy did we loose most of our friends over it.

>

> So my suggestion is this....keep on living....like lady dee

> said....do something that you love, spend time with your friends

and

> family in neutral environments, get out and exercise to ward of

> depression and get your immune system pumped up....pray and keep

> your faith....

> and dont worry about those things which you can not control.

>

> But the best advice I can give is know that you will see the end of

> this, you will get through this! It sounds like you have a

wonderful

> family, so lean on them for support because you need it right now.

> Do not feel alone, because you are not!

>

> z

>

[Guest guest]

Thanks everyone... I had a moment of weakness... ;-P

I cannot fathom the pain of having dealt with this for many more

months than me, if not for years and years. For those folks, my

heart goes out to them sincerely. I'm hoping soon we'll find the

concoction of treatments that will work for everyone very

positively, not just a few folks.

Thanks everyone for the support. I ordered cedarcide and also

bought a dehumidifier (Danby 50pt from Costco) so maybe in the

months to come, I'll be throwing a big party thanks to all of you.

What a mess it's been for the last month. Even through this

adversity, if I were to identify any positives, it's gotten me to

seek out God more and also I've rediscovered how loving and

supportive my family is. And I'm sure it was no accident that I

found such a great forum full of amazing, selfless folks.

Thanks and God Bless.

kihun

> >

> > Ki

> > In the beginning I did not deal with this very well. I wouldnt

hug

> > my girls, or leave my house except to get supplys....I focused

on

> > this 100% will all my thoughts and energy. I didnt laugh, I

didnt

> > have fun with my children, I cried all the time, I wouldnt sleep

in

> > the same bed as my spouse....I also told far to many people

about

> > this, thinking that what ever it was was highly contagious and

that

> > they all needed to be warned. When no body ever did catch this

> from

> > us, but boy did we loose most of our friends over it.

> >

> > So my suggestion is this....keep on living....like lady dee

> > said....do something that you love, spend time with your friends

> and

> > family in neutral environments, get out and exercise to ward of

> > depression and get your immune system pumped up....pray and keep

> > your faith....

> > and dont worry about those things which you can not control.

> >

> > But the best advice I can give is know that you will see the end

of

> > this, you will get through this! It sounds like you have a

> wonderful

> > family, so lean on them for support because you need it right

now.

> > Do not feel alone, because you are not!

> >

> > z

> >

>