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Post by ruth on Jun 5, 2008 21:53:56 GMT -5
it looks like i sent mine in may 23rd.
guess it was june 8th. trisha says
she needs more letters!
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Post by bessie on Jun 6, 2008 10:34:23 GMT -5
Sidney - Has this been cross-posted on all the other boards? Maybe even the related boards, like Birdmites.org, Scabies, Head Lice? A lot of people are signed up for this group, but it seems that most members are inactive and may not even see the request. I agree - the more responses she gets, the more she will see how very desperate and wide-spread this thing is. As you said, doing whatever we can to spread the word may be our only legacy - I myself do not have a lot of hope for a cure. Maybe because I am 60 and don't think I'll be around long enough to see that happen. Bessie
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Post by Sidney on Jun 7, 2008 1:09:01 GMT -5
Bessie, I'm older than you are, and I desperately want to be around for the diagnosis, treatment, cure, and validation of this horrible disease.
Browncircles emailed this evening and she's posted this on some of the other message boards, but you've brought up an excellent point. We DO SO need to get the word out to as many as possible, so if you and others are willing to help please do.
Thus far more than one hundred people have responded, but we need many more.
Congresswoman Waite is particularly interested to learn more about people who live in Florida and have Morgellons. She wants to hear from all of us, and even if you live outside the U.S. it is totally fine to send your reply since the disease is definitely not confined to the United States.
Another consideration is the Hispanic population. I'm going to ask a friend if he will translate this to Spanish and distribute it to a few health departments in Florida.
Maybe we could bring the numbers up by sending it to our local City, County and State Departments of Health.
If I can get it translated (or any of you!) we could then send it in English as well as Spanish.
All help will be so appreciated. Thank you so much!
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Post by godog on Jun 7, 2008 13:27:15 GMT -5
I will send tomorrow, my day off.
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Post by Sidney on Jun 7, 2008 19:43:57 GMT -5
Thanks, friends, and a very special thanks to you, Ant, for putting Mole asses on it. Thanks a bunch!
xo's
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Post by bessie on Jun 9, 2008 18:14:25 GMT -5
Sidney - I, too, would love to see this thing come full circle - and my hat is off to you and others who have dealt with this for years. I don't know how you kept/keep going. It's only been a year for me (though I am sure I've had it for at least 7-8 years longer), and I hate waking up in the morning because it's another day that I somehow must pass, only to finally fall asleep, and start over again. BUT - whatever I can do to push the agenda I will do. This existence has GOT to have a little meaning. Bessie
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Post by Sidney on Jun 9, 2008 23:04:24 GMT -5
Bessie, before this disease I fell asleep each night being thankful for what I'd accomplished that day, and planning what I was going to accomplish (God Willilng and the Creek don't Rise) the following day. I fell asleep at night satisfied that I had done my very best during the day, and was thankful for my life, and all my blessings. I looked forward to the challenges and was ready to meet them head-on. This disease is a thief. It robs us of our health, our appearance, and as it destroys our skin it destroys our self-confidence. We spend money in desperate attempts to find the magic cure we know is out there somewhere, but all attempts seem to fail, so we settle instead for "improvement" even though it may be minimal. Please view this video. It will bring a smile to your lips and fill your heart and mind with a sense of gratitude. videos.komando.com/2008/05/25/the-secret-message/
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Post by cheetah on Jun 10, 2008 10:24:38 GMT -5
Sidney, DITTO to everything you said. Thank you for the video. BEAUTIFUL...and I needed that his morning! I sometimes have to start my day over every hour sometimes just once a day. I tell you what though.... TODAY......... beats laying on the couch with legs that do not work doing the army crawl to the bathroom as it were a few years ago. Built my arms up though. (bright side as in cup half full) I was doing some serious feel sorry for myself and I just could not stop it. I call it the deep dark hole. It was ruff pulling myself out. Someone on this board once told me that the only person that is going to help you is the person in the mirror... OOOOH, ticked me off but it helped me for sure. Bessie...I love you chicki and this is for you www.youtube.com/watch?v=nDFXuIqP340Sometimes I just have to put on my rose colored glasses... Some people may call it denial .. I call it survival! ;D ;D ;D ;D Love and light
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Post by bessie on Jun 10, 2008 10:56:45 GMT -5
Thank you Sid & Laur - I do manage to pull myself out of it most of the time, and you are sooo right about having gratitude for feeling much better. And, again you are right that no one but me and my God can fix things. I guess the way my life evolved in the last 7-8 years, the decisions I made, the moves I made - then getting so sick - has left me in FL, where I never lived till I was 57, without friends, family, or pets. So it is me and the memories of all that has been lost. Even if I weren't afflicted, I might find rebuilding a life challenging under the circumstances. I certainly didn't intend for this thread to turn this way, but when I feel like the world in caving in and there is NO one there I almost can't surpress what I feel. My life revolved around work, family, friends, my pets, golf...now it revolves around doing laundry, worrying if I am doing the right thing, lonliness, and missing the spirit of wonder and expectation of something new and wonderful around the corner. I am sorry to be expressing these feelings. It helps no one. But thank you for providing a place for me to do it... Bessie
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Post by silverangel on Jun 10, 2008 13:20:49 GMT -5
bessie, please don't apologize for feeling what u feel. this disease has robbed us all of our lives, i am sure the rest of us would vouch for most of the emotions u have expressed. i too, have feelings of isolation, loneliness, sadness, fear, all of the bad stuff. cheetah, u hit the nail on the head when u said "I sometimes have to start my day over every hour sometimes just once a day." how many of us have had to change our lives and behavior because of this awful scourge? i myself, in the summer, never go outside without shoes on anymore, i never wore shoes growing up! i don't look at the sky the same, or nature, it makes me too sad to think that we have ruined it. i used to be an avid swimmer, canoer, kayaker, bicyclist......i have not done any of those things that i used to love in a very long time. i used to walk around these country roads for miles and miles, surrounded by corn fields, trees, nature......now i am afraid of the crap they keep spraying on the corn, on the weeds along the roads, in the air, gardening, weeding, i wear gloves now; i used to love to dance in the rain, now i always have an umbrella.....well u get the picture. i decided that i was going to live my life.....i need those things that i love! i hope that someday we will all get our lives back, but we have been forever changed, mentally if not physically. sidney, if i have not been treated by a doctor for morgellons, can i still do this report? what exactly are they looking for here? are they just trying to get a geographical idea on how widespread this is? sorry if u explained this already. hugs, silverangel
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Post by bessie on Jun 10, 2008 14:22:10 GMT -5
Silverangel - You filled in the blanks for me. Sometimes just expressing this stuff and sharing the pain with others who feel the same can be cathartic and soothing. I AM working on getting my life back, but have to deal with my fears one at a time before I take the plunge and do one more thing that I was afraid to do - like letting my bedding go 2 days instead of one without washing! To do that, I have to reach out to others who seem to be doing well and find out if they are relaxing these disciplines, too. Talking to others on the phone helps, too - "normalizes" the most abnormal of conditions known to the world! Bessie
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Post by beckybailey on Jun 12, 2008 14:03:21 GMT -5
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Post by Sidney on Jun 12, 2008 22:45:39 GMT -5
(((BB))) Thanks for the Babelfish.com link. I've saved it.
We all experience our moments, hours, days, weeks of falling into the black hole of depression and despair and it's usually up to us to claw our way out. This disease is unlike any other. Uniquely horrific, devestating to the body, soul and spirit, it robs us of peace of mind, causes unbelievable discomfort and ravages our skin. We want to live as we once did, coping with our daily struggles, some small, some huge, but somehow we managed to cope.
I doubt there's one among us who, by sheer will power, can shut out the horror for more than a few minutes at a time.
We can't shut off the questions that race through our heads as we try to understand, to learn as much as we can, to share with others, to ask questions, research on our own, and keep ourselves as comfortable as possible which is sometimes impossible due to the pain and mental anguish.
Please, people, help raise awareness, and send in your own words, an account of how this disease has impacted your life and or the life of your loved ones.
Remember you do not have to use your name. The most important issue is location. If you don't care to list your City or Town, then list your County and State. The numbers always speak volumes.
This is very basic information, and you certainly can make your report any length you wish. Thank you, and please, please, participate.
"Waite's staff wants to hear from all Morgellons patients, both in Florida and from all fifty states. They want to hear from YOU! They want to read and understand how this disease has impacted YOUR life.
If you are experiencing Morgellons disease symptoms, please email your response to:
aripekangel@yahoo.com
Your letter should include at least these facts:
1. Where did you live when did you first become symptomatic.
2. Number of members of your household who have these sympotoms.
3. A brief description of your symptoms.
4. A brief description of your interactions with the medical community.
(How many doctors you've seen, their diagnosis, how you were treated. Were they kind, unkind, interested, disinterested, etc.)
5. You may want to add any investigative procedures performed such as skin scrapings, biopsies, bloodwork, etc., that were recommended/implemented.
Feel free to list any medications prescribed to treat this condition.
If you aren't comfortable using your name, you may use a fictitious name, but it's important to identify your state. What's needed are geographic locations so that this data may be forwarded to the appropriate congressional leaders who represent your area.
If you have a loved one experiencing these symptoms who may be unable to send email, it is important that you assist them so that they may be counted. You may also call and leave a message to an account at (352) 544-8111.
This number will shortly become a reporting-only line. Your information will be transcribed and filed to enable Congresswoman Ginny Brown-Waite to provide evidence of the serious nature of what appears to be a disease of epidemic proportions.
Please consider this a safe haven where you can respond and participate. All reports will be kept in strict confidence.
We finally have a real friend in the political arena who is willing to fight for us. Let's all work together to move the 'mountain."
Sincerely
The Florida Advocacy Group For Treatment Of Morgellons
Trisha Springstead, RN aripekangel@yahoo.com
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Post by toni on Jun 13, 2008 12:17:25 GMT -5
Thank you Sid!!!
And I just sent my letter too!
This is very important.
I not only expressed "what I've lived with"...but how mad we ALL are because of everyone basically passing the buck and NO ONE doing anything.
Please EVERYONE write, express what is inside you.
These kinds of letters ARE what has gotten us this far, and we are further than we were last year, and the year before.
Lets PUSH, and cause this to get the action WE must have and that we will not accept anything less!
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Post by Sidney on Jun 13, 2008 12:43:29 GMT -5
Thanks, Toni-Sue.
She's right, folks.
This is and has always been a Grass Roots movement, but it's a movement that began as a crawl, then baby steps, then giant steps. I know how much we've lost, but look how much we've gained.
Just do it. Ask others to write as well.
Thanks!
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Post by ladybug on Jun 13, 2008 17:35:52 GMT -5
I agree - tell everyone you can think of. I sent mine in a few days ago and got a really caring reply. Every little bit helps.
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Post by Sidney on Jun 13, 2008 20:20:03 GMT -5
I've been told some major "weeping" took place as the reports came into the designated office. People really DO care....well, at least some of them!
Thanks, Ladybug.
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Post by bannanny on Jun 17, 2008 0:20:01 GMT -5
This is the kind of stuff I need to know is happening right now....... thank you Sid. Will get mine sent asap.
love you ~~ bannanny
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Post by Sidney on Jun 17, 2008 11:22:59 GMT -5
Bannanny, I know you're having a rough time of it just now, and trust me, we all understand.
Thanks for sending the report to Florida. There's a sense of accomplishment once it's done. Somewhat therapeutic I suppose, and we all know the good feeling that comes with doing a job we have dreaded taking on.
For me the best therapy is hard physical work. I push myself as hard as I can, make lists of repairs that need to be made, painting projects, endless gardening projects. Even though at times it's slow going due to way too much rain, uncooperative body, or whatever, it makes me feel more like I'm living a nearly normal life.
We all know there is no "normal" life while fighting this disease, but family, friends, hobbies, whatever we enjoy, we need to force ourselves to participate in life and find the "good" in daily living.
Sometimes it just ain't easy!
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Post by violet on Jun 17, 2008 17:11:55 GMT -5
I can so relate with the not-being-able-to-do-much scenario. It's very, very difficult. The spirit is willing, but the mind and body just aren't! I'm so sorry so many are struggling with these things, but to have the strange, deep fatigue and fogginess validated as an expected part of this condition helps, somehow. What a life-line to have you all. I appreciate you so much.
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