CF Year in Review

Well, basically 2008 has sucked as far as CF goes.  We started the year out with G recovering from a horrible canademia infection that necessitated pulling his port.  He got a new port in mid-January after they determined that the yeast was gone.  It was really draining on him and took a long time for him to recover.  He went on and off of antibiotics during the following months.  I think that the first time he really felt good was in July, and that only lasted for about a week (when we were on vacation).  

He has some freak things happen and been on IVs more times than I can count.  He is on IVs right now.  So, he will start 2009 on them too.  That sucks.  CF sucks.  I am hoping that 2009 proves to be better!

Because she always makes me smile

I decided it is time for a Happy Blog

I think that in blogging and in life, sometimes you just need to chose to be happy.  No, it doesn't mean that all of the bad things in life will go away or that you will all of a sudden find all of the answers...but focusing on the positive can make a difference.  And so that is what I am choosing to do right now. Yes, my husband has CF and this whole "kids" thing is a big issue...but it isn't everything.  I love my husband, he loves me, we have good jobs, we live in a city that we love, we have great friend and the cutest dog in the world.  So, things aren't perfect, but they are what they are and I won't let them keep me from finding and holding on to the happiness that can be had.  

Relationships, CF-style

CF sucks.  And it certainly puts a strain on relationships!  G and I had a rough discussion tonight and I am feeling very uneasy about the whole darn thing.  I think that the point that the conversation when south was when we started talking about having kids.  I feel like G is digging his heels in on the "no" side, apparently not because he doesn't want to, but because it isn't "right" to do to the future child.  I can intellectually "get" that position, but...I can't seem to mesh that with my intense desire to have a kid.  It seemed like G's ultimate position is that my options are divorce and then have a kid solo or to not have a kid--talk about attractive options.  I can't imagine that those have to be my only options, but at the moment I am not sure what else there is.  

Relationships are work, period.  But it seems that CF makes it so much more work.  I makes every thing more complicated and makes every decision harder.  Death is always in the picture, hovering over everyone, taunting.  Death will come, and I will be left alone.  We both know that.   At times I find myself grieving the future together that we will never have and wondering what I am going to do in my "after" life, the life that I will be expected to live after G is gone.  And G will feels guilty over my pain and knowing that he is going to leave me.  He says that he is holding me back from getting what I want and that it will be better for me if he was gone now, instead of some time in the future.  He is sick, and struggling with that, so I know that the sickness is talking to some extent, but he has told me about his feelings of guilt so many time that I know it is a huge issue for him.   It seems that we both love each other so much but that the love is actually hurting.  It isn't supposed to be that way.  Why does CF have to hurt everyone and everything? 

And yes, we have seen a couple's therapist and we have talked about it, etc., etc., the situation just plain sucks and there does not appear to be any real answer.  Blah! 

Back to "normal"

G came home on Christmas, but hasn't shown me the photos yet.  Apparently he loved Death Valley and wants the two of us to go for a week.  He had some bleeding on the trip, so before he came home he contacted the clinic and arranged for antibiotics.  Because of the holiday and the weather he wasn't able to get started until yesterday.  He went into the office for a bit and then went by the hospital to get some pain meds--still Demerol.  This time he is administering it IM instead of IV so that there is no port access.  It still isn't the ideal situation, but it is what pain management is prescribing for now.  There has to be a better answer, but so far none is apparent.  He will keep working with the pain clinic to see what they can come up with. This morning he announced "No more Demerol" so I don't know.  

He is taking ceftaz (I think) IV and then doing Tobi inhaled, as they don't want to go to Tobra IV unless they have to because of his kidneys and resistance.  I hate PA and am hoping that they can find some new abxs.  I look at his sputum culture results and the antibiotic choices are slim. I think that they have been this way for awhile, but it still freaks me out.

He is tired and restless, which is not a good combination. I am restless and tired of being cooped up.  The weather is finally letting up and I think that I could drive without fearing for my life, so I might venture out today just to be around people.

I finally made it in to the office yesterday, only to have my work laptop give me the "blue screen of death."  What luck!  I am not sure when I will be up and running again.  

I also think that I am allergic to something in my house as I have had very frequent headaches and have been inside forever.  I know that I am allergic to dust, so maybe there is just a lot here. Also, because of the weather, I have missed a couple of allergy shots, so that could be contributing to it.  I hate to admit it, but I think that this old house might not be the best for us.  I really don't want to move, but new construction sounds very tempting right now.  I am on the fence about size.  We love having the big house, but really it is too big for us.  We don't need all of this space, really we don't.  But it is very nice to have my own space.  We are thinking we will eventually move into a condo, but those tend to run so small here...so there is the danger of being smothered.  Housing is probably the biggest drawback of Seattle.  I love it here, but wish that housing was more affordable so that we could buy a big condo and get both space and newness and not have to live in the suburbs a million miles away from the city.  

G got me a great gift for Christmas---too "big" I will admit, but I still love them.  I got diamond earrings.  I have wanted them for a long time and he has been reluctant and we have actually fought over them, so much so that I finally told him that I didn't want diamond earrings from him and that I would just buy them for myself. I actually figured out how to get them and was planning on doing it soon (trading in a ring that I never wear), and then he got them.  He is so weird sometimes!  I ended up making him gifts this year, mostly because I was stuck and unable to shop.  I did buy a watch, but it didn't get delivered because of a mistake by the seller and the weather, so he will get that on Monday.

Friday is our 10th wedding anniversary and we still don't have plans for what we are going to do!  We have been talking about it for about 6 months, and just haven't come up with anything!  Lame, I know. I think that the "biggness" of it has been the roadblock.  Part of me keeps thinking that this will be the only "big" anniversary that we will get and so that I need to make it special.  Talk about pressure!  All self-imposed I know.  I have gotten great gifts for him (some bought and some homemade), that I will blog about after in case he does read this.  I also think that I got him to agree to an anniversary party this spring :)

Okay, enough rambling....

'Twas the Night Before Christmas

And I am home alone for the first time ever.  I am not complaining, it is just different.  My husband is on a road trip with a friend--they drove around California, Nevada, and Oregon getting (hopefully) some fantastic photographs.  I was really looking forward to the quiet down time, but ended up being snowed in for about a week!  So I am going a bit stir-crazy.  I am looking forward to having a little human contact--no offense Beauty :) . 

It has been good to have some quiet time.  This year has really taken a toll on me.  It seems like Gess has been sick more often than "usual" and this time last year we had the huge scare with canademia.  Then I had my emergency gallbladder surgery and Beauty was diagnosed with cancer.  Gess has really been struggling with his health lately and that has been hard for me too.  It is hard for me to sit by and watch, unable to make anything better and also dealing with his anger and negative attitude--not directed at me, but felt by me.  So it has been nice to have a small break from that.  Nice to sleep and enjoy the quiet.  

Gess is starting IV antibiotics when he gets back, so it will probably be awhile before I get another break.  

Feeling taken advantage of

My brother has been chatting with me lately, which is a bit odd because my family doesn't chat.  Gess actually called it--when D called the other day, G said "I bet he wants money."  And today he finally asked.  My sister asked for money to avoid having her lights turned off about a week ago.  I hate that they ask me for money.  I feel guilty if I say no, and feel bad if I give it--feeling like I am "enabling" or something.  I think that the worst part about this is that I ALWAYS feel horrible after something like this.  I feel guilty for having money--which is completely ridiculous.  And then I get angry because I have my own "issues" and we have a lot of expenses, etc., so it is not like I have tons to spare.  Ughhhhh....I hate this.

I know that a lot of people wish that their families were different, but I wish that mine was just even barely functional. Seriously, even time I get a call from them, it feels like they want something, or are laying the foundation for that.  It might not always be money, but it will be help of some sort.  And there really seems to be no give--I mean, I can't call them when I have a bad day and "vent."  It is such a one-sided relationship and  I am so tired of it.  I want to be able to call my mother and get support...but instead I am the one that expected to give it.  

This is especially hard during the holidays since they are so "family" oriented.  Probably needless to say, I am not going to spend the holidays with my family.  I am staying home and for the most part it will probably just be me and Beauty (G is on a road trip and coming home on Christmas day).  Then dinner with G and a good friend of ours when they get home.  But of course I will feel guilty.  I always feel guilty about not doing enough for my family. Ughhhh....how do you get rid of these toxic relationships?  :(

Sorry for such a downer post...just feeling it tonight!

I am having one of those days when I am inside my own head too much. I feel like I can't stop thinking and really I don't want to think! Sometimes I feel like I am always trying to be better and work on stuff, etc., and it is exhausting! I wish that I could just sit and be, but is that just me wanting permission to be lazy? Sighhhhh....I feel whiny too :( I think that I am just going to drink my wine and stop blogging!

Exercise

So yesterday both of us did the StairClimb to raise money for the CFF. It was 56 floors--or 112 flights of stairs, which needless to say is a lot. I was really nervous about Gess doing it, not because I don't think that he can be active, but because he hasn't done any training and just has had a really rough year. That is one thing that I really struggle with--how to find the right line to walk with regard to encouraging exercise because I know that it is so good for him and encouraging him to take it easy and not do too much. I don't know where his exercise tolerance is or should be, and honestly I don't think that he does either.

Our team (we had 7 people total on our team) set out on the climb, going pretty slowly and making sure everyone was okay. After maybe 10 or so flights (I don't remember exactly when) one of the other guys on the team said that Gess wasn't feeling well and was going to go back down. My first instinct was to go and find him, but the friend told me not to and that our other friend was there, etc. My good friend Tasha noticed the freak-out on my face, and she said, he would want you to just finish, come on, etc., so I did. I ended up waiting a bunch with another friend, but really all I could think about was getting that thing over and finding out where he was and what was going on. Oh, and trying not to cry.

So, we finally finish and then have to wait for a long time for to even get to the elevator to go down. When we get there we are told we can walk down the stairs if we want, so we did. When we got down to the lobby no of us could find Gess and Michael (his friend). I called his cell, but then remembered that I had it with me. Then we got a text from Michael saying that they were on the next elevator down. It turns out that they didn't go back, they just rested and then went up a few flights, rested, etc.

I didn't find out until we were in the car what had happened, but apparently his lungs started bleeding. I can't believe that he walked all of those stairs in between bleeds. It makes me sad and mad and all sort of emotions at once. And I know that it was extremely hard for him--not only physically, but mentally and emotionally. He is used to be able to be pretty active, but I think that he has been feeling limited lately and I don't think that he knows what to do about it. And on my part, I know that there is nothing that I can do to make it better--it is a crappy situation. It is hard to watch this and know that there is not anything that I can do.

And then the extra dimension to this is that I am so active. I workout around 5 times a week (though I have been slacking lately) and am thinking about doing a marathon (or at least a sprint triathlon) this summer. So I am thinking about training, etc. I can't help but think that my inclination toward activity makes Gess's situation worse. I wonder if he feels "left out" or "left behind" or if my activity just highlights limitations that CF are throwing his way. I asked him this recently as part of a discussion about his negative attitude about some of my athletic pursuits and he said that he didn't think this way, but I just can't quite shake the idea.

One thing that he is always adamant about is that he doesn't want people to treat him differently, so I know that he would not want me to change what I want to do, or at least he wouldn't say that out loud, but does he? Would it be better for him if I didn't want to do all of these crazy things? I know that there isn't an answer, but today is one of those days when all of this stuff is running through my mind. CF has so many dimensions to what it affects.

Blog Award

I received my very first blog award--well actually two on the same day!! I got them from Piper and Amy. You girls are great and I always love to read your blogs!

The rules of this award are that you must pass it on to 5 other bloggers (and then they pass it on), so I am going to share the love.

Paul: You aren't blogging anymore, but I wish that you would.

No Excuses: Your blog is so informative! You ROCK!!

Clane: My buddy...awesome pictures. I like that you are doing more "you" on the blog too. Keep it up!

Shannon: I love to read your blog. Your honesty and frankness are amazing.

Carrie and Danielle: I love your blog, it is so inspiring. I have your book on my shelf and can't wait to delve into the process!!

CF Fundraiser

Tonight we participated in the 20th Annual StairClimb to raise money for the Cystic Fibrosis Foundation. This was our first year participating and we had a great turn out. We had 7 climbers (thanks Russ, Tasha, Leena, Clane, and Michael) and our team raised close to $2900!!! We all climbed 56 floors (0r 112 flights!) of stairs!! You guys rock!!

I am not sure of the final number that the event raised, but the last number listed was around $160,000. I am sure that the number is going to be much higher after they get in all of the donations and tally everything up from tonight.

Here's a picture of our team--Team Breathe! Tasha designed the t-shirts--thanks Ta!!

Clane volunteered to take portraits of the campaigners and this sign was in the stairwell!

The event sold out this year!! Here is one shot of the lobby after the climb.

And the highlight of my night--okay, my year!!