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"... XMRV had been discovered in people suffering from chronic fatigue syndrome, a malady whose very existence has been a subject of debate for 25 years. For sufferers of this disease, the news has offered enormous hope. Being seriously ill for years, even decades, is nightmarish enough, but patients are also the targets of ridicule and hostility that stem from the perception that it is all in their heads. In the study, 67 percent of the 101 patients with the disease were found to have XMRV in their cells. If further study finds that XMRV actually causes their condition, it may open the door to useful treatments. At least, it will be time to jettison the stigmatizing name chronic fatigue syndrome.

The illness became famous after an outbreak in 1984 around Lake Tahoe, in Nevada. Several hundred patients developed flu-like symptoms like fever, sore throat and headaches that led to neurological problems, including severe memory loss and inability to understand conversation. Most of them were infected with several viruses at once, including cytomegalovirus, Epstein-Barr and human herpesvirus 6. Their doctors were stumped. The Centers for Disease Control and Prevention, the nation’s presumed bulwark against emerging infectious diseases, dismissed the epidemic and said the Tahoe doctors “had worked themselves into a frenzy.” The sufferers, a C.D.C. investigator told me at the time, were “not normal Americans.”

When, by 1987, the supposed hysteria failed to evaporate and indeed continued erupting in other parts the country, the health agency orchestrated a jocular referendum by mail among a handful of academics to come up with a name for it. The group settled on “chronic fatigue syndrome” — the use of “syndrome” rather than “disease” suggested a psychiatric rather than physical origin and would thus discourage public panic and prevent insurers from having to make “chronic disbursements,” as one of the academics joked.

[...]

It’s amazing to me that anyone could look at these patients and not see that this is an infectious disease that has ruined lives,” Dr. Mikovits said. She has also given the disease a properly scientific new name: X-associated neuroimmune disease."

Read the full article in NYT...

 

Good morning all!

    It's been a while since I've been here but this time for all the right reasons! My disability payments started in October and in January I got my back disability payment. With it, I was able to go out and get things to enable me to do the things I want to at home. Because of the fibromyalgia and chronic fatigue and pain syndromes, I tend to spend a lot of time at home. So, I draw and write, think of ways to organize our home and slowly actually do these things!

   One of the best things I was finally able to do was to go out and buy a car! We've had to go without one for almost 5 years, having to ask for rides no matter where we had to go and depend on everyone for almost every aspect of our lives. Now we can be almost independant and it feels so good!

   Another thing to bless our world is my oldest son has moved home to Oklahoma after an absence of 2 and 1/2 years. It's been a little crazy getting used to a full house again, but I'd rather have my son here than not.

    I guess I'm saying if you think positively, keep positive thoughts ever running in your mind, and push out the negativity from your mind and lives, things will work out! You've got to take every positive thing that happens in your world, no matter how small, as a step forward!

   I see blogs on here blaming the government, the illnesses people have, the families you have and even pot shots at people who are in the same situation....putting the reason why you haven't gotten help on everyone and everything but who is truly the reason.

    You've got to do everything you can, call and write everyone you can, ASK for help from places that may not seem the 'right' place to go and always have faith things will work out. I'm not saying this venture will be an easy one...you will have to be humble and accept the help that IS out there. You can't simply put ONE letter up on one site and leave it at that. Push for your life...don't let things bring you down for long...think of your families and how your actions affect them and how positive they will feel about their lives.

   I've had problems since I was a child, gone thru things no one should go thru, and this last life venture has gone on since 1997. I lapsed into self loathing, self hatred, and blame on the world. One day I realized I had to look deep inside and see what really was at the core of my problems...and found it was ME. The common denominator was ME! If I wanted my life to change, I was the one who had to make the effort to change...I could only use my past experiences for so long as excuses. I'm not saying my life changed overnite, but it did change!

    I started doing for me!! Your children, your husband/wife/boyfriend/girlfriend, your friends can only stand by you and support you. IF you're not happy or content with who you are, how can they be? I have had to take the illnesses thrust upon me as a good thing...they taught me to relax, quit pushing so hard on myself, and never give up. Those diseases taught me how to live life at a less than perfect level and take the steps back and make them into baby steps forward...ever forward.

   So, is my life perfect? Hell no! Am I rich in financial ways? No. Do I have love in my life? Lord yes. I am rich in ways that truly matter and you too can be that way too. Never give up...every experience we go thru in life has positive lessons to be learned. Sometimes we have to look extremely hard for them, but they are there!! So, in closing I can only say this. Positive thinking DOES work. Pushing the negative out of your life WILL change your world...even if those people are friends or family. You have to do for YOU!! Just KEEP the FAITH and blessings will be put upon you.

I have suffered from Fibromyalgia, Chronic Fatigue Syndrome and Lupus for the past 3 years.  I lost my job at that time and am having a hard time keeping my home.  I am so lonely and sad; my own family (or what is left of it) doesn't understand me - they think I am exagerating my symptoms and that I surely must be having fun at home.  I have little friends because I have been bed-ridden for the past year.  Looking for a better 2009.  I have gone Holistic and have much improved - to the point that I am looking for a work at home job and some friends!  Would like to share my holistic experiences with you!!

 

 

 I'm a single mother of 2 boys, ages 14 and 23. My youngest lives with me, while my oldest lives in another state. I was  re-diagnosed with Multiple Sclerosis...December 2006. Originally diagnosed in 1997, I worked thru the many problems this disease afforded me, w/o insurance or a doctor per se...until an enjoyable yet extremely physically hard job brought about, little by little, regularly occuring symptoms of MS. I quit that job after over 2 years in hopes that I might be able to go back to work after a short break. I did do so, working in the mental health field. Again, loving the work and the people, but early rising and walking  to and from work, brought on more health issues and after my brother passed away soon after beginning this job, I decided something was bound to give and I didn't want it to be me. I applied for SSI and disability, started back with medical help, and went on medication for my symptoms.

As of August of 2008, I was finally approved for disability and my payments will begin soon. I was asked to have a payee and am lucky enough to have a good friend who agreed to take on that responsibility. You do find out who your true friends are at the most opportune moments! I know many changes will happen in my life...some of them frustrating and confusing..but mostly for the good. I actually think I will be better off than I have ever been in my life! Besides that, changes are something I've become ALL too accustomed to.

The one thing that keeps changing though,  is my diagnosis~Doctors simply cannot decide what exactly it is that I have! I understand because my symptoms can point to many things, so for now, I guess I will have to go along with the ones Social Security has given me....Fibromyalgia, Severe Depression, Chronic Fatigue Syndrome and Chronic Pain Syndrome. I guess it really doesn't matter what name it has....The symptoms exist every day !

 I try very hard to keep a smile on my face, remain as positive as I can for my sons. Neither of them complain and somehow still manage to worry about ME!! My youngest still rarely asks for anything and if he wants something, he saves the money he gets for birthdays, etc for it. He recently got his disability payment and what did he buy? A few video games and movies. He doesn't think it's any big deal to let me use a bit of his $$ to get things needed around home or to pay for a few bills until my own payments begin!  He helps around the home...not w/o complaints mind you..he STILL is a teen!...but he generally is so good natured and happy, I cannot believe my luck as far as sons are concerned. His older brother is exactly the same...both being glad they were raised by me and in a non material world. Do you know how much I wish I could have raised them WITH those little things? But I'm glad they know unconditional love, if not anything else.

My oldest calls all the time wondering how I am, despite any troubles he may have. He even wants to go into physical therapy so he can take care of me!! So, I am so thankful I can give him something he so deserves...a trip home for Christmas!! He says he doesn't want me to do it, cause I need the money so much but little does he understand how much of a gift it will be for ME and his brother!  

Many of the things I've written of earlier are still the same...I don't work outside the home, I still haven't taken up photography, I don't have a car and my assistance still consists of housing and food stamps. I know I will have higher bills after my disability pmt's come in, and more than likely my food stamps will be cut. BUT I do believe I will almost like having to take care of most of these things without the additional help. It will be the first time in a very long time I feel almost 'normal'!

Don't get me wrong...life is and will be frustrating still. Having additional funds coming in will not change my health or the new and old symptoms that come along with it. Tears will still flow freely from time to time.  I will  still feel 'stranded', alone, and frustrated from time to time. Yet, I still must keep positive thoughts going thru my mind and in my life. If I do so, positive things cannot help coming into my world and the prayers I hold for others will have that much more of a positive outcome.

So, if you need an ear, someone to talk to, or even just a place to gripe and get those feelings out....please don't hesitate to write. It may take me a minute but I will do my best to help out in whatever way I can.     

I'm a single mother of 2 boys, ages 18 and 26. My youngest lives with me and my older son is now married to a wonderful girl and they are back in Oklahoma! I was  re-diagnosed with Multiple Sclerosis...December 2006. Originally diagnosed in 1997, I worked thru the many problems this disease afforded me, w/o insurance or a doctor per se...until an enjoyable yet extremely physically hard job brought about, little by little, regularly occuring symptoms of MS. I quit that job after over 2 years in hopes that I might be able to go back to work after a short break. I did do so, working in the mental health field. Again, loving the work and the people, but early rising and walking  to and from work, brought on more health issues and after my brother passed away soon after beginning this job, I decided something was bound to give and I didn't want it to be me. I applied for SSI and disability, started back with medical help, and went on medication for my symptoms.

As of August of 2008, I was finally approved for disability and my payments began in November of that year. I was asked to have a payee and am lucky enough to have a good friend who agreed to take on that responsibility. You do find out who your true friends are at the most opportune moments! I know many changes will happen in my life...some of them frustrating and confusing..but mostly for the good. I actually think I will be better off than I have ever been in my life! Besides that, changes are something I've become ALL too accustomed to.

The one thing that keeps changing though,  is my diagnosis. Doctors simply cannot decide what exactly it is that I have! I understand because my symptoms can point to many things, so for now, I guess I will have to go along with the ones Social Security has given me....Fibromyalgia, Severe Depression, Chronic Fatigue Syndrome and Chronic Pain Syndrome. I guess it really doesn't matter what name it has....The symptoms exist every day! I've finally gotten a good doctor in my home town but of course that means we start over! So far, it's just managing my symptoms, but hoping for a more stable diagnoses.

 I try very hard to keep a smile on my face, remain as positive as I can for my sons. Neither of them complain and somehow still manage to worry about ME!! My youngest still rarely asks for anything and if he wants something, he saves the money he gets for birthdays, etc for it. He helps around the home...not w/o complaints mind you..he STILL is a teen!...but he generally is so good natured and happy, I cannot believe my luck as far as sons are concerned. His older brother is exactly the same...both being glad they were raised by me and in a non material world. Do you know how much I wish I could have raised them WITH those little things? But I'm glad they know unconditional love, if not anything else.

Many of the things I've written of earlier are still the same...I don't work outside the home, I still haven't taken up photography. I finally have a car but had to trade in my 2008 for an older car. My oldest son had loaned me money so I wouldn't get kicked out of my home and I wanted to pay him back. I lost my housing and my food stamps aren't enough to feed ONE person but still, I do my best to take care of my family and for the most part, that's exactly what I accomplish from month to month.

Don't get me wrong...life is and will be frustrating still. Having additional funds does not change my health or the new and old symptoms that come along with it. Tears still flow freely from time to time. I still feel 'stranded', alone, and frustrated from time to time. Yet, I still must keep positive thoughts going thru my mind and in my life. If I do so, positive things cannot help coming into my world and the prayers I hold for others will have that much more of a positive outcome.

So, if you need an ear, someone to talk to, or even just a place to gripe and get those feelings out....please don't hesitate to write. It may take me a minute but I will do my best to help out in whatever way I can.     

Note: This aidpage was started as a comment on "Desperately Seeking any help For My Family due to Health Problems (We need more pledges!)"

thank you for this aidpage. It really is nice to know that people DO care about others. God's blessings to all of you in you search to find aid or give aid. I am also seeking help with bills due to my hsuband's illnesses and lack of work for both of us. Please contact me if you can help us in any way. tracy tedi7057@yahoo.com email and paypal email