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Showing posts from August, 2011


This request is of ultimate importance. I will explain everything better but in essence , congress has put forth a bill that could make certain drugs for rare diseases no longer available . Please call me if you are taking panhematin. I will be in the APF office tomorrow. 1 866 APF 3635.

We need you to tell us straight forward in a letter format ASAP if you have received Panhematin how many times you have received it, what setting hospital inpatient outpatient and would you say that it has helped save your life. Please think about your letters to inspire us to help gvt officials see the need for Panhematin and why it is so precious to you and how it has saved your life. Please include your name address and phone numbers, city and state, PLEASE BE DIRECT. Look at the announcement on the www.porphyriafoundation and send them to your Congressmen/woman The APF needs our h…

Arguing with Reality!

Imagine getting upset every time the sun goes down.
See your fist in rage at the sun while screaming “there you go doing it again, just like yesterday! How dare you!” and so on. You look crazy, which makes sense. I mean the sun is just doing its thing (actually the earth is the one doing most of the moving but you get what I mean). I am here to tell you that every time you complain you are arguing with reality and that is just as pointless and crazy as yelling at the sun. “I don’t complain” you might be thinking “It’s too hot” “it’s too bright and it’s not tall enough” oh and “traffic is awful!” Shall I go on? “This costs too much, she’s horrible and this and that sucks” I know you have heard it and I would bet some of you might have heard it out of you own mouth. Did you know that when you express these emotions the chemistry in your brain changes? It makes sense they change your mood and not for the better. And all that is; is arguing with reality. Things happen objectively. They come …

Do you know your Limit's?

What limits are those you may ask yourself.  Everyday we make choices some good some bad.  We make decisions in our brains without evening taking the time to notice.  What am I going to drink?  What sounds good to eat?  How do I feel today?  What can I do today?

We may organize ourselves to death every day.  We have high goals and dreams.   When faced with an Illness or disability how do we cope from day to day?  We could do everything all at once and have no strength at the end of the day, we could choose not to do anything.  But what we should do is keep moving and setting good limit's/balance every day.  We have families, friends jobs, to do list's we may get tired.  But try this for one week and let me know how you do and how you feel.

What is most important for me to get done this week?  How do I feel?  What can I do?  What can wait?
We get so busy we don't stop and take a break, listen to the birds, feel the breeze, or enjoy a good book or dish.  So stop and smell, tast…

How to Stick to Your Goals When Life Disrupts ‘Em

“I can’t change the direction of the wind, but I can adjust my sails to always reach my destination.” – Jimmy Dean Have you ever been doing great with a goal or habit change — exercise, waking early, becoming organized, eating healthy, anything — and your progress was completely disrupted because of some major event in your life (death, marriage, illness, work, etc.)? Of course you have. It’s happened to all of us. Life gets in the way. Fortunately, although we often give up our goals when something like this happens, a life event that disrupts your progress doesn’t have to sidetrack your goal completely. You can overcome this obstacle — and it is an obstacle, just like any other. Reader quench recently wrote in with a great question: “Oftentimes, I have just one goal, as you suggest, and I am focused fully on that one goal, the baby steps, etc. Then all of a sudden, out of the blue, there’s some crisis in another part of my life – my boyfriend will become enormously demanding, my brother w…