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:

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.

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,



  1. Thanks for the post to let your good Amigo's understand better your situation Jon!

    1. I did not even describe half of what goes on, maybe i should.