Wednesday, July 30, 2008

Rough Day

Today has been a rough day.  GB had a procedure scheduled for 9:15 am--an endoscopy and a flexible sigmodioscopy.  We showed up at the hospital early because he needed to get blood drawn to check on his liver functions (since the tobramycin wrecked havoc on them during the last course).  The procedures went quickly and he was in recovery by 10:30ish. The tests were both unremarkable--which is what we hoped for.  Unfortunately, right after the tests he started to have very painful spasms in this esophagus.  To make a very long story short, he is in a lot of pain, they don't have any real explanation for it, and he was admitted so they can watch him.

I handled the whole thing in typical "Lisa" fashion--making sure nurse were on their toes, getting things that GB wanted, keeping myself occupied while he tried to sleep...but I almost lost it tonight in the hospital room.  I was looking at my iPhone and saw a great picture of GB.  He is laughing and looks so happy.  Seeing it just made me cry. That is how I want him to be.  I want him to be pain-free and happy, not hunched over in pain in a hospital bed.  I wrote about the pain while I watched him, but it is too much for me to process right now.  I have a lot to say, but can't get it out right now.

Tonight will be a rough night for me. I just got home from the hospital and I am exhausted.  Yet, I feel so alone.  Beauty is staying with a friend, which means that I am in the big house entirely alone.  I complain about how loud GB is, but right now I miss his loud voice and even the sound of him stomping around the house with the shoes I hate.  I turned on the roomba vacuum thing because it is noisy and also turned up the TV.  It is cold and I don't want to go to bed alone.  I hate nights like this.  

Tuesday, July 29, 2008


Cystic Fibrosis can be so isolating, both for the persons with CF and the persons that love them. Obviously I don't know about having CF first hand, but I can imagine that it would be very isolating at times. So what I write about is what I do know about from experience. The isolation that spouses can feel because of the disease.

To start off it is important that you know a little bit about my husband. He is very independent and stubborn and has been determined not to let CF hold him back. He has been very careful about who he tells that he has CF and really doesn't like to talk about it at all. When we first got married he did not want me to tell anyone. Obviously my family and his family knew, but it just wasn't something that was talked about. So any discussions that I engaged in about CF were with my husband. And there were not many. He was in a form of denial, a place where he figured if he just didn't talk about it, it wouldn't take everything over. So we rarely even mentioned CF. I felt like I walked around it--that huge, obvious "elephant" in the room, but was unable to really even acknowledge it. That was exhausting and very difficult for me emotionally. At the same time it was really isolating because I had no one to discuss it with, so I held CF in. I internalized all of my thoughts, my fears, my anger, everything. I would cry myself to sleep at night, and really felt like I was completely alone--even with the man that I loved dearly sleeping next to me.

Eventually I told my husband that I HAD to tell some people about CF. I explained that I needed people to talk to about it when things were hard and I needed support for me. That was a big self-realization for me--that I needed help and that it was okay for me to go after what I needed. GB agreed that I could tell some friends, and I felt relieved to be able to at least discuss my situation with people that were close to me. Still, it felt like I couldn't talk to my husband about it, and I didn't feel like anyone really understood what was going on.

Over the years, GB has become more and more open about his CF and this has given me more ease with it as well. CF is GB's and so to the great extent, it is his to reveal (or not to reveal) to other people. That is something that I want to respect, but at the same time, need to care for myself.

That is why finding an online community of people with CF and caring for people with CF was so important to me. Finally there was a place where I could be totally open and free with CF. I could talk about the specifics of what was going on with my husband's health and also discuss my fears and feelings about life with CF. It was an amazing find, and one that has really changed my life (I know that sounds dramatic, but it is true!). There is still isolation in that I live in the real-world, and not in an online community...but the isolation seems less burdensome knowing people out there by name (or at least alias) that are going through similar issues. We share that common bond, that one created by mutations of the CFTR gene.

There are days when I still feel completely isolated. Days when GB is in the hospital or we are cooped up at home because he is sick. There isn't a way to get rid of those days completely, but thankfully with the support of some great friends--both online and in the "real world"--those days can be shorter and less frequent.

Monday, July 28, 2008

Life Motto

A few months ago I was waiting in line at Barnes & Noble and a magnet really struck me. So I bought it and committed to adopting it as my new "motto."

Photo from proper trooper For the first couple of weeks I was able to do something each day that scared me--some huge things and some tiny things. But as time has passed, I have moved further and further way from thinking about this each day. But today as I am sitting at my desk I noticed the magnet and was reminded of the motto. So, in a spirit of renewal, I am going to renew this motto today and really strive to adopt this. What did you do today that scares you?

Tuesday, July 22, 2008

The First Post

Everything has to start somewhere, so here is my inaugural post on the blog I created today. First a little bit about myself: My name is Lisa and my husband has cystic fibrosis (CF). He was diagnosed with CF at 3 months. We have been married for 9 1/2 years and have been through many ups and downs with his disease.

What prompted me to start this blog: A year or so ago I found a website with a lot of CF information and a forum with messages boards about CF. I found the site to be extremely useful and have met many amazing people, including people with CF, partners of people with CF, parents of children with CF, and others that are in some way affected by CF. Recent happening on that site, however, has altered the membership on that site and I fear that the resource is lost. So, I wanted to start a place of my own where I can share about my thoughts, fears, experiences, etc., and maybe offer some encouragement to others with similar situations. Some of my posts will be informative--containing information about CF or articles that I read about things. Others will be venting posts. And some may just be plain silly. We'll see what unfolds!