New to site, need help

Hello friends,

Boy do I need some friends 

I have not been diagnosed with thal minor, but my daughter was a couple of years ago when she was trying to get pregnant, her and her husband went thru extensive genetic testing to make sure he was not a thal and I have a beautiful granddaughter.

I have dealt with what was called chronic fatigue syndrome many times, the time before this I was very ill for 10 years, lost all my earthly possessions and became homeless 

I took a full time job 9 months ago but it became more than my little body could handle and I got so weak I could not get dressed for several days, I am on the brink of homeless again! I have no money or support, everyone just thinks I am lazy and irresponsible but nothing could be further from the truth.

I probably just need some words of encouragement. Anything cheap and simple to help would be good, just bear in mind I don't have money to eat properly or do normal things. I have to believe that I will regain my strength and be able to survive.

Thanks for your support.

LindaMarie

Welcome Linda Marie.
In reading  your posting , It brings home, some harsh reality of how our environment can have an impact on our lives especially when we happen to be weak or unable to provide for one self because of illness .
Having said that I also believe that while we are still living there is always a way and there is HOPE.
I  undestand that now you are  down and is feeling very low and lonely.remember once you hit rock bottom there is only one way to go and that is up and upPlease be kind to yourself and take any help you can   get and in the meantime think of how you can improve your life ,you are the only one that can do that.
I dont know where you live but I do
hope that   there is some kind of organisation or welfare assistance in place, that will assist you in getting back on your feet.
Please feel free to chat with us here we can offer you words of encouragement and friendship and a place to unload your trouble mind.there are lots of medical research for you to read and maybe assist you in coming to an undestanding of your current health situations.

I hope this make you feels better, knowing  that you are making some of us feels so gratefull ,and humble and  appreciate every little things that we have.Even now. you see, you are helping us too.
I hope you do get some comfort and your life improve in the near future,
You do matter to us all here and we do care for you,

Kathy

Hi Linda Marie,

As I mentioned in my pm, if your daughter is thal minor, one of the parents also has to be a minor and going by your symptoms, it is most likely you. We hear stories like yours constantly from minors, especially as they reach maturity, although almost every single minor who tells us they're having problems has a history of not being quite right health-wise, even as children.

I want to say something because even the Cooley's Anemia Foundation has told you that minor has no symptoms. Well, the minors in this group overwhelmingly beg to differ!!! It is so frustrating for minors because almost every doctor and the thal associations also, will tell minors that minors have no symptoms. Isn't anybody listening?!!! For the record. Minors do have health problems that adversely affect the quality of their lives. We have heard so many stories from minors with usually very similar complaints that this continuing ignorance among those who should know better-the doctors and the associations-is getting very old and close to inexcusable. If anyone doubts that minors have problems please feel free to read through the threads in the minor section of our board. If your doctors think you're imagining things, ask them to read our boards.

Linda Marie, is there any public or private organization that can help you get medical care? Are you eligible for Medicaid? Is there any state program that helps out when one can't afford care? I don't know what you can afford, but folic acid is a must for anyone carrying the thal gene. It helps build red blood cells and is very important to take daily. There are also other natural supplements like Vitamin E and wheatgrass (capsules or extract are the easiest to use forms) that may help increase your energy level and also help with the early death of red blood cells. Follow as healthy a diet as you can, with plenty of fruit and vegetables. Avoid empty calories such as sugary sweets. Drink plenty of water. Try to get some moderate exercise regularly, such as walking or swimming. Don't overdo it but get your blood flowing as your oxygen intake will also increase. The reason thalassemia is a problem for people is very simple. It limits the amount of oxygen available to your cells. In majors it limits it so much that it causes death without intervention. In intermedia and minor, the amount of oxygen is enough to survive but to varying degrees, not enough to provide a normal healthy quality of life. So your goal is to find ways to maximize and optimize your oxygen levels. Anything that can help build hemoglobin and red blood cells, protect those cells or help deliver oxygen to your cells, will help improve your health and the way you feel.

Read through as many of the posts as you can and see what other minors have to say about their condition and also what they do to improve their health and know you're not alone. 

Hi LindaMarie!

I am so sorry that you have been through so much! I empathize because my brother has had a more difficult life than me and has bordered homelessness many times. We both have thal minor but some personalities and a lack of information can send you straight to hell. I live in Los Angeles and can direct you to some resources here, as well as give you some advice on how to deal with your fatigue and improve your quality of life. I will be traveling till March 25th. If you can hold on until then, email me your phone number. I won't list my email because search engines farm it but if you click on my name, you can send me a private message.

I would be happy to help. Keep the faith. Some cultures call thal the lazy gene and some call it a stigma. It is for a reason, but you are no longer alone.

HUGS!
Marientina

Thanks to all of you 

You all make me feel loved, supported and not so alone.

I should be getting some temporary disability, I did apply and told the doctor he could give me whatever diagnosis he wanted! I just needed a bit of a break.

I would love it if I could just recuperate, but I do need to take some odd jobs to get me through, just from friends, so I can eat a little and pay my rent on time. Being homeless would be a disaster at this point.

I am a very positive person most of the time, I try to look outside and see the sun and the beautiful blue sky and laugh!

I had applied, while still working full time, for some medical assistance and just found out yesterday that they reduced my $800 bill to $30! Hooray!!! I think this means that I qualify for a $30 fee only when I am seen at the county. I did not qualify for medical or food stamps from social services, the income requirements are so low and they use gross and not net amounts. My last net paycheck just covered the rent on the small bedroom I rent, I really can't cook but at least I have a place to live.

Don't think I am upset or complaining and don't feel sorry for me, just give me love!!!!! I am very happy to be out of a full time job that put way too much stress on me. I have 4 years of college but no degree and with the breaks to have children and with continued illness throughout my life, the full time jobs are way too demanding. I want to return to the one job I had that worked for my body, so I could use you all to pray I can do that, be a certified massage therapist. I worked about 10 hours a week over 3 days and I never felt healthier. It was extremely physical, but the no stress exercise seemed very beneficial.

Can you please tell me the best brands of folic acid, vitamin E and other suppliments. I was an original HIPPIE CHICK and have been into holistic medicine, organic food and suppliments for almost 40 years, it is probably why I look so healthy. I am considering all of you my dearest friends and best source of information to know how to take care of my body so that I can give the gifts that I have in this world as long as I live.

Thank you all so much. My number one suppliment purchase will be folic acid unless you advise me otherwise.

Love and peace to all the lovelies!

     Hi Linda Marie, welcome to our site. Sorry to hear of your health struggles. I also agree that thal minors can have symptoms, as my brother does and he has minor. I have intermedia, and have many symptoms, but also have been diagnosed with fibromyalgia. I think though, I have chronic fatigue, because my symptoms more closely correspond to that. No doctor I have been to will hardly even discuss chronic fatigue, so I have suffered with it. They're not quite sure it exists. I think my mother, aunt, and grandmother had it as well.
     Anyway, the reason I am saying all this is because it sounds like you have that along with thal minor. It can be extremely debilitating, as you have documented, and nearly impossible to get a diagnosis of, in terms of disability help, etc. You start feeling like you are CRAZY because no one can say what it is you have. I have not had it as badly as you, but I have missed 3 months of work a couple times over the years. I am lucky I have been able to work, and being a teacher, having the summers off has helped, as I can  get more rest. I would have missed much more work without having that.
     I just want to say that I feel for you, and want to give you encouragement and support. I will be sending you positive energy and good thoughts, from one hippie chick to another.     Love, Jean

 


WELCOME AND HUGS TO YOU! MOST OF MY FAMILY HAS THAL MINOR OR INTER AND I HAVE INTER AND MY CHILDREN HAVE MINOR.  I FOUND THIS WEBSITE BY CHANCE AND HAVE FOUND NOTHING BUT INFORMATIVE AND SUPPORTIVE AND WONDERFUL PEOPLE WHO KNOW WHAT THALS ARE  GOING  THROUGH AND UNDERSTAND. I HOPE YOU FEEL AS MUCH LOVE AND SUPPORT AS I HAVE HERE IN THIS SITE AND ANY INFO YOU FIND HERE WILL HELP YOU. I WAS ONCE IN THE FINANCIAL SITUATION YOU WERE IN. MY HUSBAND BROKE HIS BACK IN 1998 AND WE HAD JUST BOUGHT A HOUSE FIVE MONTHS EARLIER. WE LOST BY THE END OF THE YEAR BUT I WENT BACK TO SCHOOL AND HAVE A JOB IN LAW ENFORCEMENT AND HE STILL WORKS CONSTRUCTION SO OUR LIFE IS NOT PERFECT BUT I LIKE IT. I HOPE ALL GETS BETTER BECAUSE WHEN YOU THINK YOU ARE DOWN THERE IS NOWHERE ELSE TO GO BUT UP SO KEEP THE FAITH LIKE THE BEAUTIFUL PERSON YOU ARE.