Lifestyle Difficulties

 The thing is, in order to have a decent life, those living with A1AD must live a different lifestyle than those who do not live with this genetic disorder.  Our diet is different; our sleep schedule is different; our work schedule is different; our exercise schedule is different; etc.; etc.; etc.  Just to maintain a basic life, with minimal pain, we try to control our environments with a great deal of precision.  And when we cannot influence our environment to the degree necessary, we suffer terribly.  Our health diminishes rapidly!  

The problem is, A1AD is invisible!  Even to close family members, A1AD is often out of sight, and therefore out of mind.  This is a constant struggle, and one that is met with much confusion and disbelief. 

Just because you cannot see a person's suffering, does not mean it is not there.  Show compassion to your fellow humans, let them live the lifestyle where they will flourish.  Empathize with them, instead of disbelieving them.   Why make them feel like they are worthless, that somehow they are not trying hard enough to cure their genetic disorder?

The worst quote is:  “It can’t really be that bad if you are still working and taking care of your family." 

What choice do we have? 

Years in pain, tired, and the difficulties of the many lifestyle differences for me and others with A1AD.  

Trying to hide the difficulties from our bosses, so we can keep our jobs.  

Trying to not let the pain show, so our spouses will not get angry, and tired of dealing with us.   

Trying to live a "normal" lifestyle, until we drop dead.  No matter how strong we want to be. 

Then, the daily responses, "Why did you get so fat?"  "You should go on a diet."   "Why don't you exercise?"  "That once beautiful hair of yours now awful and it falls out.  What happened to you??...."

They just cannot understand, A different lifestyle is needed!

When you have an invisible genetic disorder, it is difficult to argue the situation with others.  When they cannot see it, they have difficulty believing it.

We get tired of being told things like:

* Did you go to the doctor?

* Have you tried this?

* Have you tried that?

* I don’t know what else we can do for you...

Yes, I have tried all those things.  And, I still try everything!!!

This disorder is GENETIC.   It does not just go away.  It does not simply heal.  It requires a specific lifestyle, or my body Catabolizes itself, in order to keep me breathing for as long as possible.

I will never give up, but I want to help others realize:

* A nap will not cure me but it will help me;

* I am not lazy, I take medication and it sometimes makes me sleepy;

* I am not distant, but often in pain.  

* I struggle daily with pain, mobility problems, fatigue, and trying to live in a way that will not bother others.

Most frustratingly, people look at me and say, "It can't be that bad; you look good."

Despite the fact that my body is experiencing excruciating pain everywhere, of course I look good, I always try to look good, it is an "invisible" genetic disorder!

This genetic disorder affects me physically, mentally and emotionally.  Just because rare genetic disorders cannot be seen, does not mean we do not feel them!

They are there.  The silent attack, and definitely painful.

Please, be considerate of anyone who fights against A1AD, or any other "invisible" disorder.  

Just because you cannot see a person's suffering, does not mean it is not there. Show compassion to your fellow humans and empathize with their struggles rather than trying to force them to live your lifestyle.  Stop treating them as though they were worthless, that somehow they are not trying hard enough to cure their genetic disorder.   

Instead, help them live the lifestyle they need, so they can live as wonderfully as you!

Muscle Cramps, and Muscle Relaxants

 From time to time I come across new Alpha friends who have been diagnosed with A1AD, and they are new to the various treatments, and I would like to share one today.  

As is well known, when the lungs deteriorate, the survival mode of the body will take protein from the skeletal muscle system to use it to rebuild lung tissue, to allow a person to keep breathing.  During the time when the body is in this state, the skeletal muscles weaken significantly, and many times will experience extreme muscle cramps that can put a person on the ground screaming in pain.  To combat this, ensure that you get regular protein intake, and do not consume protein with sugar; the blood will first carry sugar, which will not allow the protein to get to the muscles, nor to rebuild the lung tissue.  It is important to continue on a daily exercise routine, to constantly be keeping your muscles strong.  

Should the muscles cramp, I use a fairly strong muscle relaxant.  In fact, I try to take it when I feel the cramp coming on, before it strikes.  If I do not catch it early enough, I beg someone to straighten my leg, or whatever muscle, and stretch the muscle, massaging it until the cramp releases.  If the muscles deteriorate so much that it is your ribcage that cramps, then try to stay as calm as possible, and breath with your diaphragm while you wait for your ribcage to release.  Try to hold onto something and get to the floor as soon as possible, to prevent head trama.  Be sure that whoever is with you knows what to do, and how to help you.  

Of course, it is always better to prevent those situations.  Keep your bloodstream carrying protein, avoid sugar and processed carbohydrates, and carry your muscle relaxants and emergency medications with you at all times.

Hard To Breathe

I am very grateful to have had such a long life, and have contributed so much.  My only real sadness is, that I would like to contribute so much more.  

My lung capacity has diminished so much over recent years, that I have difficulty doing much physical activity, so I spend days working in front of a computer.  My heart spends a great deal of time out in the wilderness, canoeing across this great country of ours.