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
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!
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
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.
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.
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
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
On the fifteenth of May, in the Jungle of Nool, In the heat of the day, in the cool of the pool, He was splashing . . . enjoying the jungle's great joys . . . When Horton the elephant heard a small noise. - Horton Hears a Who!
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
(((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:
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."
The Florida Advocacy Group For Treatment Of Morgellons
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!
"I believe there is no source of deception in the investigation of nature which can compare with a fixed belief that certain kinds of phenomena are IMPOSSIBLE." -William James
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.
In relation to this time of increasing censorship of the Christian faith, we can remember: "But the fruit of the Spirit is love, joy, peace, longsuffering, gentleness, kindness, faith, meekness and self control, against such there is no law." (Galatians 5:22)
ChasSansc2: What does this all mean? I would suggest that anyone who has Morgellon to add 1 cup of LEMON JUICE to every load of laundry they do, start drinking lemon water and maybe even start taking baths with at least 2 cups of LEMON JUICE in it.
May 18, 2019 21:54:45 GMT -5
ChasSansc2: I used straight LEMON JUICE on my body, as well as Bragg's Apple Cider Vinegar. A word of caution, LEMON JUICE on the face can feel like Mace (it burns), so, you may want to dilute it before applying the LEMON JUICE soaked wash cloth.
May 18, 2019 21:57:23 GMT -5
ChasSansc2: Great - this won't let me scroll back up - STUPID.
May 18, 2019 22:00:11 GMT -5
poi.k,hjmv: I applied to this forum 2017 and still not approved why not tell them they are not approved??? you must enjoy seeing peoplesufferandleftfordead RUDE
Jun 25, 2019 22:03:42 GMT -5
prson who agrees w poi.k,hjmv:: LOL @ poi.k,hjmv. . . so far same here. but hopefully not for TOO long
Aug 12, 2019 3:35:04 GMT -5
thinkwithwomen: what are women have health & fitness issues:)- we understood the importance of women health and fitness.we will discuss and share fitness stories and success stories we taken care of women for the age like premature and mature during pregnancy
Nov 22, 2019 6:11:16 GMT -5
DAC: I have it, but it's not real bad for me yet. I do not have any sores on my body, but the stinging and moving under my skin is very bad. I had a friend who died from this. He got it from cutting down a tree by the airport. He
Dec 25, 2019 5:25:05 GMT -5
Aitche: Check out images and videos of trichinosis think you will be
Jan 22, 2020 7:29:49 GMT -5
does lymes make ur bones hurt : does lymes make ur bones hurt when u breath
Apr 6, 2020 18:47:27 GMT -5
guess who guess who: Hello to my old friends. I
Apr 19, 2020 12:00:34 GMT -5
guess who guess who: I run
Apr 19, 2020 12:01:00 GMT -5
guess who guess who: I sure didn't know if people were posting here in 2020.
Apr 19, 2020 12:03:17 GMT -5
Pipster: I've had success w/antifungal remedies...after trying others. The bugs might be fungus drawing them in? GMO's are made with a fungus that bonds the DNA of one species to another. Mild fungal & parasitic infections worsen w/EMF waves...weaken immune system.
May 2, 2020 1:01:44 GMT -5
Pipster: It is fungal related and many natural, antifungal remedies work best. It takes time but don't give up.
May 2, 2020 1:04:14 GMT -5
lydski: I sure miss learning from many of the old members like Toni, Sydney, Abbienormal, Bananny, .
May 20, 2020 0:17:45 GMT -5
carnesmt: Anyone still out there?
Jun 30, 2020 22:08:51 GMT -5