I just cant hang on any longer

[wannadie]

Hi! ive been reading multiple forums for months and have never posted due to not knowing how, being exhausted and the severe pain in my fingers from these things eating all my tissue away! Im 37, live in chicago illinois and a single parent to a beautiful 17 year old boy! my life has completely fallen apart since i got this disease and I need help! Im a RN and havent worked in over a year! i have no money, no job, no insurance and no desire to live anymore! I graduatwd from college with honors after overcoming a durg addiciiton that dam near killed me and this disease has ssent me on a downward spiral again and i just wannadie! i need help, i need a friend i need something fast. im in a severe stage of this disease and just want to end it all! i dont know what to do

[ladycolorado]

I want to let you know you are NOT alone. That although Morgellons Disease is not cureable it can be made managable. I am sorry you are sick but glad you have found us.

If you would like someone to talk to there are many good people in here. We do care. I will say I was once very sick but have improved alot thanks to finding M-D-R, this message board.

(LC)

[Katinka]

Hey Wannadie,
I felt just the same like you when this nightmare all started. But believe me it get's better after a while. At this forum you can find all sorts of information
in order to cope with this disease and it really helps.
You are not alone with this situation...we all have our own fears. But I really believe we are coming close to answers here..so this IS NOT the time to give up. I have a 17 year old beautiful boy too..and HE IS worth living as I assume your boy too. Boys need and love their Mom(although they don't want to show ). So think of that, stay strong for your kid.
Here at this forum you will find all the support you need...many nice competent people here who are willing to help eachother.
You can come here any time you want if you wish to talk of have any questions. We will be glad to help you!!
Katinka

[tcmgpt13]

Hi wd,

I hope you will hang in here--there's lots of things you can try, even with no insurance. Many of the suggested treatments to help slow the skin lesions are inexpensive. Please read some of the suggestions under the treatment steps:

Living with Morgellons-Treatment Suggestions (permalink 1):

Carla posted here about an inexpensive treatment for lesions

Treating Leisons (permalink 1):

If you can try to get on disability from social security which will help with your medical care. This may take some time, but it can be done:

Disability Benefits (permalink 1)

As already mentioned, you are not alone, so I hope you feel as if you can post any questions and concerns you have about this disease. There are many here who have contributed information which may be helpful and I am sure there are many willing to help you now.

Sorry that you have morgellons, but you can get better with some treatments.

best, tcm

[Robin]

Hello wanna,
I cannot speak for all of us but i can almost guarantee that we all have been exactly where you are right now! this too shall pass! this disease is hell it comes in stages and this is Definitely one of them! unfortunately.please don't hang up the towel yet.we are closer than we've ever been at really getting to the bottom of this.i can relate to struggling like we've never had to before.my children and i became homeless because i was so sick and could not contribute to my family .this is all i have i have noone to count on besides me and mine! so just hang in there it will be okay! i will give you my number on your private messages don't hesitate to call me!
xo
Robin

[Kritters]

Hello, WD....I certainly know how you feel and the ONLY thing that keeps me going is my children and grandbaby. This thing has sucked the life right out of me. I used to look forward to doing things, accomplishing things. Now I have to focus on the future of my kids and how they need me in these times and what they will have to face in the tough years ahead with the world as it is. We need to be tough, band together and learn as much as we can for THEIR sakes. There is a reason we are going through this, and it isn't to end our lives. Kids are devastated if their parents die...esp. a 17 year old only child with a single mom.

You got through your addiction and graduated with honors....what does that tell you? So now you have to be strong for your son. You can't help see him through life if you aren't around. You are strong...don't give up now.

Kritts

[-----------]

Hang in there, Wanna... help is here.

[selfresearcher]

Wannadie--Im new to this site and was about to log off when I saw your message. I too am a former RN but now am currently disabled from this. I have had it over 25 years and have self studied it for eight years..Here's what I know...You cant give in to this disease..Point Blank. Second you will have a remission period soon. I found the worst part of this is not the symptoms one gets but the frustration of not being heard and believed especially by the medical community. In 25 years I have brought this up only three times to doctors and the last two were recently. I was patronized and of course deemed delusional. For about two weeks I was so pissed off alot of my thoughts were about getting validated and it consumed me thus making my symptoms worse. I realized though the medical community is not ready to accept this. Probably wont in my life time. I can tell you this is not a new disease but a zoonotic disease that is never suppose to occur in humans. Until medicine can accept that there now are things that can paratize humans as the definite and only host ...being heard will be a far distance. The best thing to do from personal experience is throw away any equipment, tools, containers etc..even specimens if you have them and accept you have an unknown disease. Try not to let it consume your thoughts, actions etc...Go about applying for Social Security Disabilty. Verbalize your thoughts related to this in places such as this forum. Or to others you know definitely suffer from it. When going to doctors only report the objective and not what you think it is. Meaning, Im having severe pain in hands, back, legs, insomnia, headaches etc..Let the doctor diagnose you with what he knows. (Even though you know he might be way of base). His diagnoses will give you the avenue to get medications that can relieve the symptoms. Such as pain or insomnia etc...There is no cure and it does create real medical diagnoses. Such as Fibromyalgia, Depression, arthritis etc..Trying to convince a doctor who is closed mind about it will only frustrate you, enrage you and in the end be in front of a psychiatrist only recieving psych meds for relief. KNOW that everything you experience is real. And I mean even the things that occur that have you questioning whether what you just saw or heard is real. I wont go into those symptoms as the ones that have experienced the really weird stuff know what Im talking about and for those o you that havent probably wouldnt believe it at this point even knowing it presents itself in strange ways. I have experienced in the past four years some of the bizarrest stuff ever and for awhile thought maybe I was delusional. I finally realized what I saw, smelled, heard etc.. was real but not something you want to verbalize to anyone especially your loved ones. I just say to myself...hey your not going to ruin my day and go about not giving this disease the power over me. Also from experience I no longer verbalize to my young adult children about the disease. The reason being is my kids said to me recently "Mom we believe you have something but dont want to hear about worms, fibers etc..as it scares us. But know we believe in you" I see some of the early symptoms of this disease in them but no longer tell them. I do though write down what works etc..so in case I die they will know what to do. This I leave in a safe deposit box and update every once in awhile. I do this as I have had 4 cardiac events from this and the last time didnt think I would make it. I had to let the doctors treat me for what they believed it to be and not try to tell them what I know it is. (Trust me--thats a hard one for me) I find it amusing that doctors can place a Rare disease diagnoses on me without batting an eye but if I were to mention I think I got worms they immediately question my sanity. Go figure.
PLEASE HANG IN THERE WANNADIE....ESPECIALLY for your son. DO NOT LET THIS DISEASE TAKE YOU PREMATURELY FROM THOSE THAT LOVE YOU. If you want to chat you can send me a note via this site. And definitely go to the doctors and let them put their rendition of diagnoses on you so you can get SS Disability. I have been labeled with three Rare diseases that I know are not accurate but hey it won my SSD so I could support myself. Also get whatever help you can from the State, Churches etc...And if you do come across those who already see you as delusional just laugh with them.
ANYHOW-My point is this tries to sabatoge you all the time but the less power you give it you will find remission periods longer and longer. PLEASE DONT GIVE UP.

[Kritters]

Dear Selfresearcher,

I am glad you have been reading the information here on the forum even though you haven't joined in the conversations.

You gave very valuable information and support and that is what this forum is all about. Thank you for making your thoughts known.

I'm glad your kids acknowledged that they believe at least that something is wrong with you. I never thought about it before, but you brought up a good point about them being afraid when they think of worms etc. and made me realize that is probably a large part of why many of our families reject what we say about this being.

One more point I would like to interject here I didn't mention in my post, is that we do not know what will greet us on 'the other side' meaning when we die, since to our knowledge we haven't died before. It could very well be worse than here. We could be going through this for a reason unknown to us and it might be important to see it through in the here and now. The best thing to do, IMO is to fight it with everything we can and as you said so very well, Selfresearcher, don't let it get the best of us....don't acknowledge its abilities to control our minds.

Best,
Kritters

[Sadsack]

selfresearcher -
Can you describe the pain in your hands? Mine started just a few months ago but it is getting worse all the time. It seems to be inflammation related, focused more in the joints but spreading out.
Before I "exploded" with Morgellons, my left knee was very sore and swollen for awhile. After I found ways of extracting stuff deep within the tissues, I had a bunch come out from around that knee - so much it left scars where it came out - but at the end the swelling went down and the pain subsided.
I think this is different, but I may try extraction techniques on my hands to see if that is what is going on.
SS