Tuesday, August 30, 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 help! They help us lets help them!

Arguing with Reality!

Description: stop complaining1 The 21 Day No Complaining Challenge | Stop 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 with no labels. If traffic did not slow your progress it wouldn’t be traffic! If poor drivers didn’t drive poorly they wouldn’t be fully expressing themselves. Think about it. The point of yoga is to accept life as is and by doing so you can shape the future. However, when the present is happening, its happening and we can choose to embrace it or complain about it. Complaining only hurts us and doesn’t change a thing expect our mood.
Try this! As I work with future yoga teachers I challenge them to go 21 consecutive days without arguing with reality or complaining. It seems easy however it took me four months on my first try but it gets easier with practice. Let me clarify complaining, let’s say you order a meal at a restaurant and it is cold when the server brings it to you. If you simply request the server to bring you a warm meal that is not complaining because you are speaking to a person who can directly adjust the situation. If you turn to the person who you are dinning with and say “I can’t believe they would serve me a cold dinner” That is complaining.
To keep track simply put a rubber band or a hair tie around your wrist and every time you catch yourself complaining move the band to your other wrist. Try it. It is a life changer. Also you will find those around you very helpful so let them know what you are trying to do. I once had a second grade teacher try it and she had heard whole class wearing non complaint bands! Imagine twenty second graders trying not to complain, imagine if it caught on, what a pleasant world it could be.
How to go 21 Days Without Complaining:
It doesn’t take that long after you put that rubber band around your wrist and attempt to go 21 consecutive days without complaining, switching the band to the opposite wrist when you do, to realize this challenge won’t be as easy as you first thought. To be honest, I considered myself to be a pretty positive person but within an hour I caught myself complaining. I believe my first catch was “that song (name withheld) is terrible.” Yes, labeling is complaining. The song wasn’t terrible, in fact all the artists, engineers and producers were extremely talented and the song itself had given joy to millions of people hence producing millions in revenue consequentially supporting thousands of jobs that supported thousands of families and so on. The song wasn’t terrible it just wasn’t the style of music I enjoyed. So my first tip to stop complaining is to stop labeling and take a moment to consider why and what you are saying. This practice alone will improve every relationship you have because you begin to communicate what you truly want to say.
The example above also illustrates my next tip. Get over yourself.  It is not all about you, so consider other people and other things. Here in Texas in the spring many people will complain about the rain. “Oh darn, it’s raining again”. The first thing I think of are the countless animals and plants that rejoice at the showers of spring, however in a moment I am also reminded of all the gardeners, botanists and even people like myself who love the rain! Then of course in the summer I hear “I can’t believe it’s so hot”. “Really?” I think to myself. “It has been hot in Texas for tens of thousands of years, what did you expect?”
This last tip is my favorite; Look for the Good. What can you do with what life is currently offering? Isn’t that always the question? Because the fact is, we live in the present no matter what that present moment brings? If there is a temporary delay in your life like illness, sickness or finding yourself on hold look for a good way to use it! In traffic you can catch up with an old friend you have been meaning to call, pop in a CD to learn a new language. On hold you can do a quick brief meditation that can relieve stress and perhaps add years to your life. If someone is short with you it is your opportunity to work on your compassion and understanding.
Bottom line, you want to wrap yourself up with the ever present silver lining of life. Not only will it bring you joy and peace. It makes you one of those people who seem to shine and attract the attention and affection of all around you. Shine on!

So why do we do this to ourselves?  Do we even notice it, does someone tell us?

Amy Chapman~AIP Patient

Monday, August 22, 2011

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, taste and see all the beautiful things in this world, and ask your self Do I know my own Limits?

Amy Chapman~AIP Patient

Thursday, August 4, 2011

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 will get hospitalized with a life-threatening illness, my boss will decide there is an emergency that I have to handle overtime, etc.! This happens will such frequency, that it’s almost predictable, every time I start really buckling down on what I need to do to accomplish my goal. Then when I thoroughly demoralized, and lying around unmotivated, everything else in my life seems to calm down, and I’m just left wondering how to pick myself up again.”
This is an awesome question, because it’s so true to life. Things happen to all of us … but the real determination is how do we deal with them. Do we get discouraged and give up, or do we figure out a way around and keep going?
Here’s the thing: the path to every goal is littered with obstacles. You must, must, must, absolutely must anticipate that you will run into obstacles … figure out ways around them … and keep going.
Here’s how to do that:
1. Anticipate, anticipate. Think ahead. What obstacles do you see on the horizon? What obstacles have you run into in the past? What will change your routine? Weekends are a mini-obstacle that often seem to derail people trying to create a habit. But there are other changes in routines … holidays, summer, big events, changes at work, birthdays … these are often things you can anticipate and plan for. When you see something coming up on the horizon that might derail you, plan for it. Make it a part of your plan.
An example: I’ve been trying to learn to eat under my new meal plan … and I knew that a party was coming up. Well, I anticipated it, learned the restaurant, researched the menu, and incorporated it into my plan. But on another occasion, I just anticipated the family event and allowed it to be one of my two cheat meals for the week. You have to be able to let up a little if you want to stick to it for the long term.
2. Find the path. When you see an obstacle, are you just going to give up? I hope not. An obstacle is just something we have to get around, or over … it’s not a reason to quit. So instead of quitting, ask yourself: how do I get around this obstacle? There’s always a solution, if you’re creative enough.
Sometimes there isn’t just one path. And it can be hard to decide which solution to choose. But don’t fret: choose one path, and see if it works. If it doesn’t, try another. Life is an experiment.
3. Two steps forward, one step back. You will face some setbacks every now and then. That’s a part of achieving any goal worth achieving — if it were too easy, it’s not a worthy goal.
But instead of seeing the setback as something discouraging, just accept it as a part of the journey. “Two steps forward, one step back,” is what I always tell myself … and it’s a realization that even with setbacks, I’m still making forward progress over the long run.
For example, I’ve had some setbacks when it comes to my exercise habit. I often seem to get sick after a few weeks of continuous exercise. But though illness has set me back a few times, I’ve now learned to see it as a welcome break, allowing my body to recover. Think of it as a time out … you’re allowed to rest when you’re sick, and when you get better, you’ll be recharged and ready to start again.
4. If you fall, get up, and learn from it. All of us fail, from time to time. No one is successful all the time. But instead of letting failure stop us completely, you just need to get up and dust yourself off … and this part is important: learn from your experience. When you fail, ask yourself: why did I fail? What stopped me? What obstacles got in my way? And how can I get around them next time it happens (and yes, it will happen again). And plan for next time.
5. Find new motivation. Sometimes a setback will leave us not only derailed, but demotivated. So the real problem is finding the motivation to start again. So, it helps to get back to the basics: what made you want to start in the first place? What was your reason for change? What motivated you? Thinking about that, and the benefits it will have in your life, and the way things will be once you’ve accomplished the goal, can help motivate you.
But I also recommend adding additional motivators, to help jump start you.
6. Go with the flow. Change is good. Change is a part of life. We might like our routines, but there will always be something that comes along to disrupt them. Accept that, embrace it, and learn to flow with it. If we become too rigid, we will break in the face of the pressures of life. But if we learn to accommodate those changes that life throws at us, and still head towards our goal, we’ll be happier and we’ll get to where we want to be.
Be willing to be flexible. Change comes at you … don’t despair, or get frustrated … take that change and make it a part of your plan.
Life will throw us curveballs. With practice, we can learn to hit them out of the park.

Amy Chapman~AIP Patient

What is δ-Aminolevulinic Acid Dehydratase Porphyria (ADP)?

What is δ-Aminolevulinic Acid Dehydratase Porphyria (ADP)? ADP is more severe than the other acute porphyrias and can present in childhoo...