Tearing Tendons

 One of the sure signs of the body not getting a proper balance of protein for long enough is, muscle and tendon tearing.  Since the lungs of an A1AD person are always rebuilding, they need a constant source of protein in the bloodstream.  If there is not a constant source of protein in the bloodstream, the A1AD body will breakdown muscle, tendon, and even bone tissue to re-route to build lung tissue.  This re-appropriation is done to keep the survival mechanizms of the body functioning enough to keep the A1AD breathing.  The downside to this stealing the protein from other areas of the body is severe weakness of muscles, tendons, and even weakened and soft bones, easily breakable.  The solution is to cut out all sugar from the diet, and maintain steady protein in the bloodstream.  The protein should come from various dietary sources.  Along with this, a steady schedule of muscle building exercises should also be maintained to counter the catabolic effects of A1AD, not to mention preparing for unseen circumstances where there is not enough protein in the blood.

I hate torn tendons!

Hard To Breathe

 Some days it is just so hard to breathe!

I have been running around so much lately, and my schedule is so far off, I am having trouble recovering.  I really need to get back on schedule, and get back on a proper A1AD diet.  It is so easy to stay healthy when on the proper diet and on the proper schedule.

Kindness Of Strangers

 I have recently met a distant neighbour who found out we were digging out our drainage by hand, and he offered us the use of his backhoe.  It is a great blessing, for such a kindness.  It certainly helped the job go faster!

Thank-you very much!

Not Acceptable

 It is sad, when I have spent so much time in a club, and now I am not allowed to be a part of it, since I cannot get the vaccine, due to this genetic disorder.  I am quite sad about this!

Getting Yelled At

 Today was the first day I was yelled at to leave an establishment for not having a vaccination card.  I saw the sign outside, but as an A1AD lung affected person, some establishments have been kind to me, letting me shop because the vaccination is life threatening to me.  So I figured, maybe I could just ask.  I opened the door, stepped inside, and began to ask.  The gentleman asked first if I had a vaccination card, I said no, and said I just wanted to ask...  He just started raising his voice, telling me I had to get out.  I of course just put up my hands and agreed, and said I was only asking.  My wife and I turned and were walking out, when the guy kept yelling at us.  I turned and said, you don't have to be so mean.  That was it.  It was not a big thing, but it was definitely not mannerly.  

We are all subject to these mandates against the Charter of Rights and Freedoms, the customer as well as the business owner.  At least we can all be civil, polite, and courteous with each other, maybe even remain friendly toward one another.  The business owner is not the only one suffering, neither is the customer the only one suffering.  We are all in this together.  Instead of burning bridges, let us work together.  After all, this is only the beginning.  Things will get far worse than this.  We may need each other later on.k

Have a great day!

A Change In Lifestyle, A Change In Pace!

 This blog began to share my adventures as I cycle, paddle, and ski across Canada, to raise awareness of Alpha 1 Anti-trypsin Deficiency.  Because of a decline in health, I have just decided to blog a few things here and there about life in general, from this Alpha's point of view.

The Simple Pleasures

 Rising early in the morning.  Watching the sheep being taken out to pasture, by one of the young men on horseback.  Watching as the little children of the community run around on foot, helping to herd the sheep.  The whole community working together for the benefit of all!

A Lot Of Work

 I moved out to the farm, to have a relaxing end to my life, and maybe to extend the length of my life by living at a slower pace, but it sure takes a lot of work just to get a small farm organized.  I do not find much time for blogging.  

Not So Relaxing

 We had some difficulty with neighbours, so we are out working on fences.  It is fun working though.  Cutting the fence line on our side of the fence only, pounding in new posts, stringing new barb wire which contrasts with the old.  I should take a few pictures, to post them!

A Relaxing End

 I moved out into the countryside, so I could have a relaxing end to my life.  A1AD has progressed enough to make living a normal life difficult.  My muscle tissue is very weak, and even something as simple as sneezing or coughing, can cause muscles to tear.  Yet, I am happy!  

Oh, To Be Able To Work

I miss working.  

Alpha 1 certainly limits what a person can do.  I usually have enough energy to go until noon, then I am out of energy for the day.  It is tiring.  So, I like to get up early, and work in the mornings, before my energy runs out for the day.  Of course, many interruptions in the morning working hours, do limit the amount of work I can get done.

Last week, I was able to get 3 days of work.  Three days might be something, but it is not much!  It is difficult to earn a living, when you are only allowed 3 days of work a week, many weeks, not even that much!

I really hate not being able to work!

Missing The Active Lifestyle

 Life has become dreary these past few years.  Being in a situation where I am not able to get enough sleep to recover, cannot eat on the proper schedule, and am not able to exercise much in the early part of the day, when I have any energy at all.  Life has indeed become dreary!

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.  

Normal Temperatures

 This week we see the return to normal temperatures, which means that my lungs will be able to handle the outdoors with much more enthusiasm.  I would really like to be out, exploring the Canadian wilds, and maybe I will, after this bout is done.  Every so often, the A1AD kicks in and does a number on my health, and really diminishes my lung capacity.  But, as with all things, it only lasts so long, and as soon as I can get back on a decent schedule, and back on a decent diet, it will straighten out!  Then health returns, and I am loving life once again.  

So, until that time, I will just be blogging, out of my bored mind!  

Have a great day!

Cold Snap

 I am a person that loves winter!  

I love skiing, skijoring, dogsledding, ice fishing, etc.  I love the sound my boots make, as I walk along the trail at 30 below!  It is a magnificent time!  

The problem is, there are many virus' that spread in the cold of winter.  Perhaps it is because we spend so much time indoors, and so little time in the sunlight, but it does affect us Alphas from time to time.  

We just had a cold snap, a couple nights that hovered around -40C.  And, even though we were able to see a little of the Northern Lights, there is a definite fall-out.  I look forward to the day, when we all are healthy and strong.  

May the Lord bless us!

A Child Of The Land

 My folks were young when they married.  They lived in a small tag-a-long camper while pregnant with me, their first child.  My dad bought an old country school-house that had been turned into a barn.  When my mother and I returned from the hospital, we moved into the old school-house.  It was drafty and cold.  

My dad worked hard, always looking for jobs, while running various business adventures.  He was gone a large portion of my childhood, working on the trans-Canada pipeline.  My mother worked hard to raise me and my brothers, but she was overwhelmed with living in poor circumstances.  This left my brothers and I to our own devices for much of the time.  I strayed here and there, often spending time at my grandmother's house.  

Gramps always being out in the field working, I would visit with Grandma.  She was a kindly woman to her grandchildren, but definitely strict, and very sassy to anyone else.  She would feed me, but would also expect work out of me.  Sometimes the amount of work did not make up for the food she fed me.  But, I loved being a part of things, and loved the stories she would tell.  Grandmother taught me many things, and I miss her.  

I loved living on the land, and never wanted to leave.