B Thalassemia I want to drink your blood! Petrina Hahn Living with the condition. My personal experiences in life.

I am going to need to have blood infusions at some point. This has been with me all my life. The economy is bringing me to a point where I will no longer be able to function in society and be forced to disability and probably poor health. I won't be able to take buses to work and around. My condition won't allow that. I can't even get a filler job because last time I did that I was passing out at work. After a few times of passing out - the company really doesen't feel comfortable with it.

I have to live a rather healthy lifestyle compared to other "normal"people. I cannot eat the food regular people eat and so being on food stamps has hindered my health as well. Without getting the paycheck I can no longer afford the vitamin supplements nor the real good food I need. I can only imagine if there weren't food stamps. Then I would be dead allready.

I am looking up jobs for the disabled - but with this disability will they formulate jobs for me? They say they have career centers - I have been. I have been on unemployment since June of 2011. This is bogus and so I shall update you as to my ventures on trying to getting a job that I can do. Being positive it doesen't sound it but this really is the way it is! No kidding. It's a pesty blood condition that is having me look up the beginnings of Dracula. Interseting story that came about the same time they discovered Thalassemia. I think everyone who has this should have a book on the original Dracula.

I have nothing to prove - I just would like to work but have also committed myself to being able to be on disability for it's not my fault. So what - I am disabled- big deal. I mention the economy because so many of us working are now unemployed. I should take a poll with other folks who have a condition to see about what needs are most prevalent. I did what I could for decades worked self employed - this going towards the get the check is hard in many ways.

I have helped my friends get on disability and support them. So it's time for me to just "do it" and if the economy gets better and I am able to get a job I can do,great. Until then I will just do what I need to. I have decided to choose enjoying whatever benefits are out there for me. I shall take everyone. I am hoping they will even have people come about and clean a few times a week.I doubt it one can ask. Having a condition makes me at least accept what is and just go with it when I have to. Because of what I have, I actually qualify under a few categories of disability due to the physical impacting factors. Too bad I can't collect on all of them-joking - this is life.

Love you all.

Beta Thalassemia - being small - living large. At a young age I diden't feel any different. As I got older in my teens, I started passing out while talking to my friends right in front of them. One day I remember passing out three times just walking/hiking to the swimming hole.

I coulden't finish school, and there was no provisions made for me. This condition is such that energy levels are drained easily. I would look at my arm that coulden't move and wonder what the heck. Is this arm going to move again? My mother brought me to the doctors and they did bloodwork and they said I must be into things and full of stress. I remember my mother coming home one day letting me know about the" fight or flight" responce syndrom. All I kept thinking was this person she went for counsel to must be one of those wierdo's from Western Mass backwoods alternative types who think they're posessed by some forcefield energy, beam me up Scotty what's wrong with my arm? She even had someone do an Aura reading. 70's bad medical practice- smoke another approach. My poor mother was going everywhere trying to get the answers.

My mother also took me to a pyschiatrist. She still diden't know that I had a blood disorder so she was thinking there must be something wrong with my thinking processes. They were talking mania, bi polar, whatever is associated with high energy levels then down time. Here I am fatal condition and having people around me wanting my body to be fully functional when physically impossible. I would excersize then sleep so soundly you coulden't even wake me. Once I slept for three days. No doctors were called, just sleep for three and see how it goes. There's such a disconnect from the Pysch world and medical realm. I do believe in both I think though that someones physical ailments should first be looked at in order to see where the person is at. Right now even today I am sure this is happening elsewhere to many children across the states. So much drama and so intense when it doesen't need to be. I also got fed up with the doctors visits and nothing coming out of it.

In Washington State I was able to find what conditions I have. I was never told what I had in Massachusetts. The process of figuiring out the approach to how I was going to live my life started in Washington State.

I was able to have great lengthy discussions with a church leader. Oh I cried to him the poor thing. I went to church in the afternoon and sat there for confession. I did my best to try and not cry but atlas the father asked if I would like to go into a room and discuss this matter of mine. You see life as I wanted it was over - I could never have the life I worked towards at as a child. Believe me I prepared. I wasen't able to do some things but I was determined to have a good life and no one was going to stop me. I was completly lost and needed the anchor from a person who I could trust with my life and my soul. My soul keeper and I spoke a few times every week during confession. Face to face small room.

I was very lucky, so young needing the advice that was solid - I wanted the best for all of us. I had to think of everyone. I knew my choices would impact everyone around me. I wanted positive, so I am glad that I spent the time lets say a few months to do this searching - oh yes that minister probably remembers me to this day. During my weekly trips to the helper of keeping my soul in the direction towards God - I also started martial arts. By doing both, I was able to check on the lessons of meditations that I was recieving. I needed to make sure that my working towards this new venture of trying to save my life was at least decent.

I have lost an Uncle- my Uncle Johnny to PTSD. I saw what my aunt went through and certainly knew how I felt from losing him to the disorder so I needed to make sure I wasen't going to develop PTSD and if so work on whatever issues would come about as it happens.

I spent a year with my Sensi - working on different aspects of meditations and mental excersizes. From very sirene calm energy work to loud forcefull in the moment type.

After my year of working on all these aspects, I was able to better position myself mentaly and physically. Getting myself in tune to my body and preparing for the acceptance of an early death as well as the addressing the condition and not giving into it and having it consume me as a person. I diden't want this condition to be all that I am. I think I did a good job I was a single parent, raised my child, went through some school, opened my own business on my own. Not bad.

So I have created this page to share the experiences of wonderfull Beta Thalassemia and give those who have this or any type of condition that stops them from anything in life a chuckle. Going through life with a disability around folks who are limited in the medical field is very difficult, especially when they think a pill should cure everything.

Here I am forced to be a health-nut and can't have the body I want. That's right no Olympic Medal! What I can have is a great feeling of total happiness come over me like nothing else. I don't know if it's the blood condition or just real adrenaline. Yes it's true. I do this to myself every year. I love it. It may help me out by going a bit soft - like I am now to working out - eating healthy - I have to watch it on my liver and pancreas - very concerned for those organs.

By going through a body cleanse sort of speak and pushing my body - I think it forces the blood to be made more. What I have to do is not stay at a certain level and let it fluctuate. So I get down time and go through like "spring cleaning".

The cleaner you are the better you can meditate. Especially starting off - trying to figure out how to relax just work out man and get yourself exhausted for the first few months trying to meditate. Working out helps you position yourself to do that. Or stay uptight and get frustrated and one more thing to just want to blow a wall down with.

As a child, I grew up around persons who practiced other religions than my own. This has enabled me to accept the different ways of reaching to a calmer more completed inner Spirit. I have chosen to view God as the energy and spirit who guides me through my times whether good or bad. I actually beg God to make me better - but here I am still with this condition and I still have such a great reverence for "Him".

I have been so angry at God before in my life wondering how being as good of a person that I am - why, how, what is it? I have learned that I cannot demand things from God. Has he been there - yes. Has life been cruel - yes. Has my life been filled with love more than others yes. Having this has given me the opportunity to be really good - which has saved me on occasions from time to time.

By having God as my keeper, I believe I have been able to live with the body I was given. It is the life that I focus on - and think of my body as the tool. So pretty much I approach my condition as a workshop. This tool/body that I have is for certain things. In today's world there is much to choose from for even this type of body so I don't get hung up on it.

Through allowing myself to constantly prepare myself for God, I have accepted my fate. At least I know one certain way that I will die. I have pictured it and figured out how I personally can deal with it. This is a very spiritual aspect of my life. How I am going to God and gosh darn-it all - I best be good for Him. self Sainthood? No - the Pope has not knocked upon my door thanking me for being scared to obeying God's will.

I worry for anyone who pushes religions upon someone. My faith tells me to come to God on my accord, let Him into my life. I was tought to believe that He knows - like Santa Clause what we mean what we say; and what our intentions are. So I accept the good intentions of other religions out there for goodness, kindness, is pretty much spelt out in all the religions as the same. Just depends upon intent. I think that if you practice getting closer to your needs then balance can be brought into your life.

You might have even gotten a giggle out of what I just said and I do hope so.

And that's it - because I do not want to come across as someone of whom the church has asked to come forward. My telling you views of my religion is just so that you understand I believe you have to connect with your personal spiritual need. During meditation you cannot achieve a calmness if you have no good place to go. I cling to God for life - that is my choice - I like to think my friends and family are waiting in heaven that this is not the end nor all that I will receive through my journey of life's circle.

When you go out to look for styles of meditations - just remember - the approach would be the same as approaching your religion, friendships, the love of your life. This is you we are talking about you need to love yourself here more than anyone else you have in your life in order to achieve good mental calmness. If you had diabetes you woulden't go out and get a candy bar in order to feel good - now would you?

So please try to aproach meditations very lightly until you find the one that works for you. If we all married the first person we dated we would be either totally miserable or uniformed or both. Do research and go to the person who instituted the meditation style. The net is so good for this. There so many persons out there who want to just wing it. You musen't this is a marriage of yourself. Fortunately you get to use as many different styles as you wish. There is no rigid regimen for meditational entry.

You should reject things for meditation be healthy about it - think of clothes shopping, food shopping now I hope you are understanding the approach I took. You have to try so many varied aspects from everything out there. If I only drank one type of beer and never any others I never would have gained my love for Bourbon, whiskey and scotch..

That is what you are missing out by trying only one style and chucking it to the side and thinking it's nuts.

I worry about people not being able to support themselves and meditation can form a buddy within for strength and guidance in times of need and times for inspiration. there are times when I go out and see people I haven't seen in a long time especially funerals - people get all teary eyed when they see me. It's like yes I'm dying - I am going to die yes - I look not as good as I used to and so I start wondering if they are sizing up my self and wonder how long it's going to take for me to go. I go through all this - sur eyou can relate the look folks give and wonder how bad is it? How are they supposed to approach the "fatal one"? Will she spill blood or something? I can go on and on - another good reason to meditate - never mind the jealousy factor. People are jealous.

If you can take college courses on pyschology please do. Unfortunatly it takes time and courses to get to the good ones. College books are much better then regular store or library. If you can start with those then delve into the inspirational meetings and tapes they work. I can't mention names yet - I have to go about and ask for permission - don't want to get sued trying to help out about meditations and inspirations.

Everyday can be a challenge when you wonder how long of a day you have. Are you going to get cold and have something - is this going to start really kicking in. Do you mention that you have a problem? Only if you choose too. I have lived with this for many years - all my life = 42 years. The path that I have chosen has given me the opportunity to live within my self, so that I can give to others. Having the strength to do what I need for me - has gotten me through much in life. I have been very protective of who I am in order to live better and have a more normal life.

Being strong is not having to give more than you want to or able. Being strong is being yourself knowing yourself enough in order to give what you want. That is how I have made my life around me and under my terms. By doing so, I have been able to give without others even knowing that I have a condition. By doing so, it enabled me to feel more complete in my life. Besides - is the other person there for me? Will the interaction be supportive or total rejection? I take my time getting to know people and sharing myself with them. I am looking forward to doing so with you all and hearing from you as well about your self and sharing our experiences together.

Choose strength, be strong for yourself, open the doorways to love.

Losing my friends really hurt. Meditations with the right person can help you actually stay with your friends. Yes. It can give you the ability to have them with you and keep them placed in your life. At times I will wake up crying for I know that they are only looking down at me. When it seems like there are more friends in heaven than here on earth it can seem lonely for a moment. Taking that feeling of missing your friends and going to them through even a short meditation can help you take them with you throughout the day.

I am not saying to seperate yourself from your religion and reley on meditations but I am saying is too use someone who has a PHD level and has studied the brain extensively and has a job history similar to yourself. That way you can connect and have the ability to speak to someone who can guide you to where you need to be. The man who worked with me was very smart and worked as a State Trooper. He was on a special unit. Now - I also was surrounded by many other good people. Now here me out surrounded - that is right "SURROUNDED" by other people with my let's call it body work. Martial arts, meditations, energy work whatever -

I withdrew from persons in my life who would have no clue with what I needed. Even friends that would be clueless I diden't engage them in anything of what I was going through becuase I knew they coulden't help for what I needed. I went to the church they have to go through at least 6 years of studying how to help people and if they want to get up to a place higher than a priest - they have to go through more leadership classes and studys. The instructors I took my classes with where very knowledgable and good experience with what is needed in order to bring me to a place were I could start to learn how to meditate.

I would have 20 - 30 guys pulling me through my workouts in class and when it came to focusing on being able to work a crowd - I had ten guys at least helping me through scenarios. It takes more than one person and certainly takes more than good intentions by a few people. It takes education - life experience that is tangible - as well as a network of specialist of whome can get together and work with you on the process. If properly done it won't take long. Withen six to nine months you can have the ability to really start connecting. I am 42 years old and have decades of being able to you know breath the light exhale the dark - get it.

I really believe that if I diden't have the work done with me and not being able to participate in the crowd stuff and learn how to meditate then my health woulden't be as good. I can even give blood. They checked it three times for me at the Red Cross the first time I gave. Just to make sure they were getting a proper reading. Am I healthy all the time - well no but that is my body and as I stated God won't change it. So getting through the freaks out is very important. Leaqrn how to work it and you can find yourself in a place where you can start to have your friends with you who have passed, your life here on earth in a good place, and have those around you who diden't know your friend and your feeling for them close to you. You don't have to seperate yourself from others in order to keep your friend alive inside of you. Real classes can do that for you.

I have said enough here and going to add a photo.

I had a stressfull weekend. Played around with my children but not having a job for over two months now and actively looking has me wondering wether I can even hold a job long term because of the hours and physical demands.

I had been a stay at home mom working on Real Estate projects, development and such. I also used to help out my sons father with construction projects. He was a general contractor. I even ran the backhoe at times. We are no longer together so the backhoe job is no longer available. Time has passed and so have the people I have worked with. So now I have to find a job! Ouch.

The economy is going to have me looking at disability if I can't get a decent job that I can function in. I need to work- certainly capable of doing what I used to and function highly at it - however those days may not be here and so I am forced to look elswhere.

What is elsewhere and what sort of job can I have?

Trying to be forced into the usual is what's happening to me and that is tough.

I actually feel rejected.

Figuiring out placement is going to be tough. It's not that I don't believe in our systems it's just that I know the systems don't get you anywhere and the folks working for the system typically treats a disabled people like a jerk. I know the difference - selling commercial real estate to having to look at disability. It's such a no thank you. Thank you should never be expected - I thank the folks - but what little I get - it's more wondering why can't they just flip me a job?