Monday, October 26, 2015

Taking the first few steps


The past few weeks I have had the chance to talk to a lot of people and get some insight into what life should be.  We all have our different views and beliefs of what Life should be and how it should be lived. And the reasoning behind those conversations is twofold. One, I want to find out what makes them tick, what they do, how they live. And two, I want to take part of what I hear and apply it to my life.

You are never too old to change. I have made up my mind that I am not going to stay stagnant. I have gifts that need to be shared, even it’s just shared between me and Liz, or me and Peanut, I will not hold back.  I am not going to give in to doubt. I have always had a hard time believing that I was good enough. I have let that doubt linger and continue to be a voice in my head. No More.

I have been re-reading this book called Taming the Mind by Thubten Chodron , it’s a great book that teaches Buddhist teachings and new age techniques on becoming a better person and letting go of prejudice, judgement and ill will towards others.  I read it a few years ago when Liz and I were separated for 9 months. It helped. It helped align my soul. I finally let go of a lot of resentment and hate that I had built up for years.  It helped me understand that I was a cyclic existence and nothing was changing. It was the same thing over and over.

I also read a great blog by my friend Emily Perry. She is such an amazing, inspirational person that has such a light of kindness and love in her life and has made it her mission to help you Manifest the best self you can be. Her posts have helped focus my own thoughts and have given me the drive to achieve what I want throughout the day, the week and so on.

Change is never easy. It is hard. It sometimes takes courage and the gall to tell others to screw off and not let the inner doubts in.  I am looking forward to my continuing change to be a better man, father, husband, lover, friend and co-worker.  I hope that you will be able to see the change.

Quote of the Day:

“Everyone thinks of change the world, but no one thinks of changing himself” –
Leo Tolstoy

Song of the Day:

“Beautiful Day” – Joshua Radin






Monday, October 19, 2015

Handing Rarity


Living with a loved one that has a rare disease is hard. Living with a loved one that has a rare disease that is also chronic and terminal is even harder.  

Now, I know most of you are saying, terminal, how long does she have?  Well, it depends. It depends on the day, the stress on her body and the day that her body finally says enough is enough. You could also say that we are all “Terminal”. And yes that might be true, but we are all terminal with Natural Causes with age. Cancer, car wrecks, murder, accidents, natural events and rare diseases are not a natural death.  You probably had no choice or inkling of it.

Most of you by now know the story of my wife Liz. She is fighting a rough, hard battle with Hereditary Angioedema also known as HAE.  She fights daily.  And the toll it takes on a relationship is hard. There are days when I want to scream.  I have talked to many people that have HAE and many of them are divorced because of it. Their spouse could not handle it. It was too much for them.

   The day to day grind it takes on us is hard to explain.

Here is an example of a day with Liz if she is having a bad attack/swell:
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Normally I can tell how the next day will be by the night before. I will usually stay up later, to make sure she is breathing ok and that she is resting. I will usually call into work about 1 or 2 in the morning depending on what I feel.  I will go to bed.

Peanut wakes up and I will get her ready for school and stay up and make sure she does not bother Liz while she is sleeping. If Liz is still struggling, I will take her to the ER or call our Family Doctor and get his input and then go from there.  Normally, we go to the ER.  I get her up and help her shower. I wash her body and help wash her hair. I get her clothes and then try to corral Peanut and make arrangements to get her picked up for school or babysat.  Peanut loves the ER. She wants to go all the time, because they give her snacks and coloring books. 

While at the ER, I will have to explain again what is going on, why were are there and so on and so on.

(Liz and I are both amazed at how much we have to explain to them constantly, even though we have been there over 30 times in the past year). 

 They do their thing and get her stable and then we sit and wait and then they might have to do more testing, x-rays and medications.  They release her and maybe send her home with a prescription.

We come home and I help her to bed.  I get her situated and then I constantly check on her while she sleeps and if she gets worse, we go back to the ER and I might have to call in again the next day or two.
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So that is a typical day. Throw in doing laundry, dishes and cooking and it’s full.  I get frustrated, but not with Liz. It is the situation. I feel I don’t do enough. I don’t want to let her down.  I know she gets frustrated. She feels that she is not a good wife or mother. She can’t do what she normally could do. She feels locked away most days. Since all she can do is go back and forth from the bed to the bathroom.

  It takes a toll on both of us. But I love her. I love her through all of this. I know she loves me. I know that Peanut is loved and she knows that her mom is sick and that it can’t be helped. Peanut loves to help. She gets Liz her medicine and drinks and some days just wants to lay with Liz to comfort her. 

Life with a rare disease is rough. The answers do not come at once. The cures are not there. The support of the medical community is slowly coming around to where they finally understand HAE more here in America.  The first real medication for it here was approved in 2005.

It affects all aspects of our life.  You name it, it affects it. It sucks, but we try to work it out the best way we can.

I hope this helped a little on understanding more of what Liz goes through.

We love you all,


Jon

Monday, October 12, 2015

Yea or Nay


Since my last post I have gotten emails from friends and others both supporting  my stance and what I said and some siding with my so called friends who decided to put my wife’s health issues front and center and blame my Spiritual journey away from the Church as the reason she is sick. 

I honestly do not understand that. I either don’t have the brain power to think clearly and understand where they are coming from or they are so completely stupid and na├»ve to think that a loving God would ever do that to one of his children or their family.

My wife has had this disease her whole life. It did not just suddenly appear. She has spent years battling misdiagnoses, medical tests and assumptions.  It is nothing that I caused. It is something that is unique to her. It’s a trial that she is facing with her own mortal body. I am here to help her as much as I can. I try my best daily to do that. I love her more than words. She is the mother of my little girl. She is my best friend.

Do any of you think for a second that if I had any inkling that my spiritual beliefs had anything to do with her illness that I would not be the first to the Temple every day?  I would not even hesitate and you all know that about me.

I don’t know why all of a sudden this is an issue that has come up. There are much more relevant issues right now with Liz and her health than people worrying about my spiritual well being.  Or does that go hand in hand with how the issue is perceived?

I do not know why my friends are leaving at a time when I most need them. I feel that I have let them down for a reason that eludes me. I don’t know.  Is it that I have asked for help on her gofundme page?  Should I have not do that?  One of the hardest things for me to do is to show my vulnerable side and let my weaknesses out and to ask for help.  I am sorry if I offended any of you. If I did I truly apologize. 

I just don’t know. It is something that I will probably not ever truly understand.

I feel sorry for the friends who have left. I feel that they are judging me on a merit that has no standing beside me not being exactly like them. I am the same person they have always known and the ones who have written in support of me, thank you. Your words of encouragement have meant a lot. And I am going to go against the grain and ask you, if you can, please donate to Liz.

I hope you are all well and I hope to hear from you.

Quote of the Day:

“Rivers, ponds, lakes and streams - they all have different names, but they all contain water. Just as religions do - they all contain truths.”- Muhammad Ali

Video of the Day:


-End of the Line- : The Traveling Wilbury’s


Sunday, October 4, 2015

Am I Losing others because of Who I am?????


The title says it all.

Recently, i have received some emails from some long time friends who have decided to throw away our friendship because as they say " I am not living how i am supposed to".  Some of you can probably already guess what that "living" pertains to. Yep, the Church.

I am not going to delve much into it. I am just going to say that over the past few months i have decided for MYSELF and MY Spirituality that i am no longer going to be a participant. I don't need to raise my hand and be counted, i don't need to be a number.

Most of you know that i have struggled life long with the Church. Its nothing new. And that is the most shocking part of these emails. They have known me pretty much my whole life and they are letting go of our friendship over me not wanting to attend a Church.  The one bad part of the emails that they have brought up, is that because of my attitude and as they say "EGO" on how i chose to live my spiritual life and mortal life that God is punishing Liz and making her sick because of it.  And on that i call Bull shit. I have never been taught that God will punish someone else for my misgivings.  Where did they come up with that???

How dare they even try to guilt me into coming back that way.  I look on them saying that and realize that the ones who need God in their lives is them. They need to look at what they are thinking and saying and evaluate their standards and morals.

As stated in the Bible:

Deuteronomy 24:16
Parents are not to be put to death for their children, nor children put to death for their parents; each will die for their own sin.

Ezekiel 18:20
The one who sins is the one who will die. The child will not share the guilt of the parent, nor will the parent share the guilt of the child. The righteousness of the righteous will be credited to them, and the wickedness of the wicked will be charged against them.

So Liz is not being punished for my lack of attending Church or following its teachings. And whoever thinks that, is an Idiot.

I am living the best i can. I pray, i believe in God, Heaven and Hell. But i also garner inspiration from a whole other area of religions and life. I learn new and exciting things daily. That is what life should be like.

 I am thankful that i grew up in the Church. I am grateful for the standards that it taught me. But i no longer need it to hold me up. I have found God and my spirit and i am happy being me. And if you can't accept that and want to end our friendship that is fine, that is your decision. I have never once cared how any of you were spiritually, if you attended Church, if you paid your tithing. I only cared about YOU and how your health, family and kids were. I have not changed. I am the same person you have always known.  Just a little heavier.  I have always thought of your friendships as life long. Even though we might not see each other daily, or just on facebook, or have not since high school the friendships and feelings have not left. I enjoy hearing from all of you.

I also want to thank you who have asked about Liz and have written, shared, donated and asked about her. We appreciate it so much. This year has been hard.  We continue to live day to day. We never know what the next one will bring. She has been to the ER countless times this year, the ICU a few times and has had some really scary incidents where we both thought that this was the last time we would see each other. Please continue to pray for her. And if you can donate, please do. Continue to share her page and story.