HOW DIFFERNT ARE WE?

HOW DIFFERNT ARE WE?

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HOW DIFFERNT ARE WE?

November 4, 2009 in Uncategorized

The adults with PKU... how many of them actually are struggling with life in general here.. cause i thought the numbers were alot higher then they seem on here... I guess it all depends who was off diet for a long period of time.. is where all the difference comes into play... I was off 25 yesrs i seem to be normal.. but as of late i see i realy dont think like the average guy... I dwell on things that occure alot more... I think too much.. and very selfcouncious i guess.. i wish i wasnt.. buit what can i do.. I am begining to see this.. Headaches are a big thing for me.. Dizzyness.. weakness.. holding a job is something i cant do... so now i am on LTD... waiting for SSI... not something i want to do.. but i really dont have a choice.. everything i have done since i lost my job back in March 09 is against what i believe.. and i was to a point forced into it.. by my wife.. by my doctors.. by my work... against my own will.. but if it will in the long run make my wife happy.. thats ok with me... I will not be on SSI for lift though.. I am a DJ.. and very good at Web Site design.. so i am going to over the next several years get that going Full time.. its a goal i set.. so i dont have to feel useless and be on SSI for life... This is very discouraging ... but PKU is something that is here i guess and i have to deal with... 1 in 30,000 why couldnt it be a lottery number or something... oh well.. i deal with and make the best of the deck i was delt... there are worse things out there.. and at least this is something that can be managed ...

5 Reviews of HOW DIFFERNT ARE WE?

  1. Registered: Apr 24, 2009

    Posts: 0

    Cornwall, New York

    One thing that is important to know is that it is never too late to go back on diet. Even if you decreased the amount of protein in your diet a little bit, you would feel much better…. about yourself, headaches, etc.

    Also, did you lose your job because of job cuts or did they feel you were not doing your job correctly? If you lost your job because of PKU and inability to do certain things, there are laws out there to protect you. In another words, it is completely illegal for a company to fire you because you do have a disability – PKU – that can prevent you from doing certain things in the job place. Contact me if you want more info on this!

    Hang in there – don’t compare yourself to others. Focus on trying to get yourself back on diet and making you feel better.

  2. Registered: Nov 3, 2009

    Posts: 0

    , Massachusetts

    I am on the diet… have been for the last 10 yrs.. and doing well.. at times anyway.. I lost my job becasue they said i was unfit for duty.. because of my illness… I did look at getting a lawyer… but went the other way cause the lawyer wanted me to say i didnt have a disability.. and we would not get the help we are getting now….
    I have been pulled in directions i never thought i would take .. and frankly i didnt want to take.. between my drs in Boston.. and my wife.. and others i went along with the disability route.. No my will i followed.. so everything has been against what i believe.. and i see now the help we are gettting.. but i still dont want to go this way…
    I set a goal though… 3 or 4 yrs i will be off of disabilty.. I will get my DJing and web design going Full time.. and thats what im good at and thats what i want to do… ill be my own boss.. so if i have a headache or feel weak.. i dont have top report to any boss.. that was the prob there.. I was sick at times.. and when i was sick i lacked concetration.. they lied thier way though it too.. oh well..

  3. Registered: Apr 24, 2009

    Posts: 0

    Cornwall, New York

    I’m shocked your lawyer told you to not go down that route….because an employer absolutely not fire you due to an illness… It looks like you do know what you were doing, but I am still going to through this term out… You do know of Americans Disability Act – right? In the end, it will work out. I am sorry to hear you have had such trouble lately. Lucky for you, you have a beautiful family support system. Hang in there – things will come together! They always do.

  4. Registered: Nov 3, 2009

    Posts: 0

    , Massachusetts

    That was back in April.. and yes i heard of it.. and then they tossed out that they have to make Accommodations for me.. IM NOT AN IDIOT! grrr they made me seem that way.. I worked in one of the biggest hospitals in Western Mass… Baystate medical Center.. and in a pediatric clinic….
    there for 8 yrs… and in that clinic for more then a yr… they said they could find me another job.. but i was making about $13.50 and hr.. they said anything they would find me would probably be more like 8-10 $ an hr.. THEY THINK IN STUPID? I have probs but i am more usefull then that… just made me mad.. I am currently on LTD.. and waiting for SSI Social security Disability.. after i get that.. i will have to pay BAYSTATE MEDICAL CENTER ALL! the money from LTD back to them.. its just a loan.. THEY REALLY SUCK! sorry im getting upset talking about it.. but you get the idea…

  5. Registered: Apr 24, 2009

    Posts: 0

    Cornwall, New York

    I am sorry to hear that! Hang in there – something better will come along

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