January Blues

I haven't been blogging much lately despite the fact that I promised my blogging would pick up again once the holidays were over.  I apologize for the (at the time true) statement which turned into a lie.  After taking down the Christmas decorations I found myself in a slump, and I'm still there.  I typically get this way once January hits, but this year it's hit a little harder than usual.

I haven't been posting as I hate writing sad posts, but as this is part of CF that I've had to deal with, I felt the necessity to get it off of my chest.  I warn you now though that if you don't want to read a sad post, please just skip this one and rejoin me for my next post which will (hopefully) be much happier.

Over the past few days, a revelation dawned on me which made me quite blue: according to the "average life expectancy" (currently 38 years) of people with my disease, I now have far more yesterdays than tomorrows.  I obviously hope to far surpass the average life expectancy, but just thinking about this fact made me extremely sad.  There is so much that I still want to do with my life, and I feel like I have been wasting time recently.  I also realize how much I want to be there to see my children have children, and I worry if I will make it there.  None of us have guarantees, and I believe I've stressed that enough, but CF causes you to ponder your own mortality much sooner than you should have to.

I also started thinking about the things I would like to do, if I didn't have CF.  I would love to travel the world, but my medications and requirements to stay healthy make that such a HARD thing to do.  I would love to climb a mountain.  I've always been fascinated with mountains, but I know my lungs couldn't do it.  I would thoroughly enjoy being a nurse, but the germ exposure is too much of a risk.  I would love to learn gymnastics as I've always found the sport to be quite beautiful.  Again, my lungs wouldn't handle it.  Most importantly, I would have at least 3 kids.  I've been quite sad thinking that our first child will probably be our last (at least naturally, although adoption or surrogacy is always an option).  I think that's the crushed dream which I find it the hardest to accept.  Pregnancy can be quite difficult on a CFer, and I don't know that I will risk my health to carry another if I already have one child to take care of.

This disease needs a cure, that's for sure.  I want to be here for a very long time, and I want to raise my CHILDREN and see them become good, kind people.

Again, my apologies for writing such a sad post, but I felt it needed to be said.  Hopefully the next post will find me much more chipper and optimistic! 

Paperwork and a Rollercoaster

Today has been filled with paperwork.  If I was ever shy about sharing any part of my medical history, I'm certainly not anymore.  Today I answered about every medical question I could ever imagine.  10 pages of family history and personal history questions takes forever to get through, but I finally finished..well I finished MY section of the paperwork.  When David gets home, we'll work on his section.

We have not wanted to share this fertility journey with family/friends because it is personal to us, and it is hard to explain that we've failed to do something naturally that most people can do.  My mother, sisters, and a few VERY VERY close friends know, but other than that - no one knows.  Unfortunately, I had to lie to my mother-in-law today...I feel TERRIBLE about it. My husband doesn't know his family history (to be honest, I needed my mother's help for a lot of my family history).  Because of this, I needed to ask my mother-in-law for his side of the family's history. I told her that we had to see a geneticist because we eventually want to have children, and it required us to fill out a bunch of paperwork on his family history. I feel MISERABLE lying to her, but I didn't know what else to say.

Other than that, the day has been a little emotional. I find myself sad one minute and fine the next. I tell myself I could handle not having kids if I had to, and then I know I'm lying to myself.  I feel like I'm going to cry at any given second, but then I find myself laughing instead.  It's definitely going to be a rollercoaster of emotions for the next few days, weeks, months, years...who knows how long.

Telling my husband was hard.  VERY hard.  I told him I was ok with it, and then suddenly started crying. I think I sobbed for an hour straight last night, until I finally couldn't cry anymore.  We realized we are going to have some tough decisions to make, and some tough days ahead of us.  I'm glad that I have him by my side for this journey, that's for sure.

We came to the conclusion, when I could finally talk again after crying, that 2011 has been an exhausting and difficult year for us.  We have had a lot thrown at us, and we are having trouble in two major parts of our life: job and family.  We are stressed, tired, and sometimes defeated, but our love for each other keeps getting stronger.  We will both be VERY happy to ring in 2012 in a few months! :) 

A book full of tears and thoughts

SPOILER warning: If you have never read The Time Traveler's Wife by Audrey Niffenegger or seen the movie and you plan to do so, please skip over this blog. It will contain spoilers from the story.

I never expected when I woke up this morning, that I would be blogging about a book.  A book that, until I was coerced by my book club, I had no intention of reading. However, as I sat on my couch, sobbing through the last 60 pages or so, I knew I needed to talk/write about it.

 

This book was difficult for me to read and fascinating at the same time. I felt a connection to the main character, Henry, because he also has a genetic disease which he has no control over. Granted, CF and time traveling are just a tad different, but regardless, he can't control what happens with his disease. I often feel like that's the case with CF as well.  We can try everything to get it right, but sometimes we still get sick and need IVs or extra treatments. Sadly, I have been reminded of this aspect of CF again and again with friends who have suddenly become ill.

Having that connection with the main character, I was drawn in pretty quickly to the book. So as the novel continued, I found myself struggling and relating to their journey with infertility/miscarriages. This section was incredibly difficult to read.  As Henry and Clare (the two main characters) make it through 6 miscarriages, I found myself wondering if I would have stopped at one.  These thoughts may also be due to recent circumstances in the CF community, but either way it made me think. Naively, I thought that this part was going to be the most emotional section, but I was wrong.  Definitely wrong.

As the book began nearing it's end, Henry has traveled into the future and has seen the date of his own death. He knows his death is coming, much sooner than he would like, and he begins to think about his life.  He think about his wife and the great moments they have had and also the sadness that has engulfed their lives at times. He thinks about his daughter and how 5 years with her is not enough...how he longs for more time with her.  Henry is suddenly forced into the mindset that I believe many people with chronic diseases face at one point or another: there is just simply not enough time.

I'm one of those cysters who firmly believes she will live a long time with this disease or that it will not be the disease that takes me out of this world. That being said, I have still thought about my life ending early. I have thought about saying my final goodbyes to friends and family...and to my dear husband and it tears me up to even imagine it.  So, when I read about Henry thanking his friends for their loyalty, support, and love, and when I read about his goodbye to Clare as she tries to comprehend what is happening, I bawled. I'm not talking about little tears here and there, I mean full-out sobbing. I have imagined this scenario enough that reading it seemed too real. 

A few pages further, Clare (Henry's wife) opens up a letter that Henry has written to her right before he passed away.  He talks about how he cherished each moment they had together and he would give anything to have more time. . . and as cysters and fibros, that's what we all desire more of..time.  We want more time in the day to do our treatments, exercise, eat a gazillion calories, and still live some sort of life. We want more time between PICC lines so that we can feel normal for a bit longer. We usually fully understand how precious life is and we desire more time with family and loved ones above all else...

So the book left me realizing that I have, in recent days, been consumed with the desire to get through the day and finally get to sleep (our days have been incredibly busy with very little besides work).  I have been missing the opportunity to live every moment to its fullest.  I have been neglecting holding my husband's hand just a little longer while we sit on the couch. I haven't kissed him as much as I want to and I haven't said I love you nearly enough.  All I desire is to have him home with me right now so I can hold him and never let him go.

CF or no CF, none of us can escape time.  All that should matter is the here and the now, and a lot of us (myself included) forget this way too often.

An Emotional Rollercoaster Kind of Day

Today has been an emotional rollercoaster for me, and I’m not 100% sure why.  I just know that I’m finding myself quite sad this evening.  I have a couple theories as to why:

1)      I’ve been praying for a large number of people later.  Normally prayer does not make me said, and it’s not the actual act of praying that has made me said, but the reason I’ve had to say the prayers. It seems like there are so many people that are sick, struggling, in danger, or having troubles and are in need of prayer right now. It just seems like an overwhelming amount compared to my usual prayer list.  This in turn makes me feel sad and guilty.  It’s very hard for me to know people are having troubles and there is nothing I can personally do, except for praying for them.

2)      The weather today was dreary and cold. There was not a single ray of sunshine that touched my skin today and the chill in the air had me in a jacket and gloves this morning.  Normally, I enjoy the cold and the greyness of the air doesn’t bother me, but today it just seemed sad outside. I felt like the weight of the world resided in the sky today and like I would never see sunshine again.

3)      My mother and I went baby shopping today for family and a family friend who are both due at the end of the year.  Again, this normally doesn’t bother me and I actually had fun while I was partaking in the shopping, but at the same time, it’s just another reminder that we are not pregnant yet.

4)      My hormones are all over the place.  I’m angry, sad, happy, in tears, and laughing within a 5 minute span of time. I don’t know what’s going on with them.  I’m also exhausted from this illness still and I’m concerned about the severe pain in my left breast.  It’s a pain I’ve never felt before and it hasn’t let up in 24 hours now.  I’m hoping it’s just a really bad case of PMS, but if it’s not gone by early next week I think I’m going to make an appointment to get it checked out.

So, I’m guessing that my sadness is tied to a combination of all the above factors.  I’m hoping that some extra sleep and a nice big breakfast tomorrow will help me get back out of this funk.  I honestly hate feeling sad and I hate relishing in self-pity which I find myself doing a lot tonight.