Wow, I haven't posted on this blog this year. Not because nothing has happened...in fact, I am not sure exactly why. Maybe I am just not wanting to talk about CF. 2008 was a rough year for us in a lot of ways. Gess was sick, too sick. He was IV antibiotics probably as much as he was off. I think that he only felt good, really good, for about a week, and that was while we were in Belize on vacation. It seems like the infections are coming more frequently and not getting all the way better. I don't know what is going on, but whatever it is I don't like it.

Gess started off the new year on IVs--that was a 3 week round. He has been off for about a week or so, and now he (and I) have the stomach flu or something. He is worse than I am. We literally slept the entire day yesterday. Today has been better, but we both stayed home. In general it just sucks.

There are days when I feel like CF is a huge wedge between us. I think about it way too much. I feel myself pulling away from him. I think about death. I hate it. I hate how it sucks away life, how it tries to overshadow the goodness of life. It is so hard to focus on the little things like just sitting on the couch, snuggling with the dog because CF is always there, always staring over our shoulder. Ughhhh...I hate being such a downer. Just one of those days. Blahhh

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!!

Vitamin D

So awhile back I was feeling really horrible--worn down and tired all of the time and just "off."  My doctor ran a bunch of tests and the only thing that came back out of the ordinary was really low Vitamin D levels, so he put me on a supplement.  Well, it has been about 6 weeks and I feel SO much better!  I was curious, so I did a bit of research and found that fatigue, muscle aches, and depression can all be signs of vitamin D deficiency.  Who knew?  I am so glad that my doctor is thorough and checked it!  

Home

Gess came home today.  He is currently pacing around the house because he is on demoral.  I hate it when he is like this.  It drives me crazy!  Anyway, the echo came back clean and so did the blood work.  The MRI machine was broken, so he has to go back tomorrow.  

I'm home from the hospital.  Gess is still there.  They ran some tests, but have a bunch more that they want to do. I was finally able to get the full story, so here it is:  As he was was getting out of the shower he had a big coughing fit and then his entire right side went numb and his vision got all funky.  He had trouble walking and decided to sit down.  The numbness went away and his vision started to correct and after about 30 minutes it was back to normal.  Then a horrible headache set in.  He called the clinic and left a message and then went to work.  Headache got worse, so he decided that work was not the best idea, so just ran in and picked up his laptop and told his boss that he wasn't feeling well.  

He went to the ER and went through that whole process.  The neurologist said that she is 99% sure that it was a migraine (apparently all the symptoms fit).  Their biggest concern is that something like a TIA could have triggered it.  So, they admitted him and are giving him fluids since he has felt a little dehydrated.  Battery of tests tomorrow, so we'll see how that goes.

I spent a couple of hours with him tonight and now am home with Beauty.  I am drawing a hot bath and then going to get some sleep.  Tomorrow is going to be a long day. I have been out of the office all week in a hearing so I need to go in to check on things, etc.  So, I know that it will be hectic.  

Hospital

Gess is in the hospital.  Apparently had a coughing fit this morning and then his vision got blurry and he got a headache.  Then he couldn't see when looking straight ahead, only in the periphery.  This has happened once before a few years ago.  He called the docs and then decided to go into the ER.  He is still there.  They said that they are going to admit him to watch him but there aren't any rooms so he is still waiting in the ER.  

The docs say that it is probably a migraine, but they want to rule out a TIA.  So, he will have more tests, etc.

Pain Relief

So Gess got on major pain meds yesterday and the good news is that they worked right away and he feels a lot better.  He has been sleeping all day, which I probably a really good thing for him too.  He is making so much noise in there right now (see my previous post).  I am really going to push the sleep test issue, so we'll see :)  For tonight I am sleeping in the guest bed (which is really just my bed, I love it, it is so comfy and I love to stretch out--I don't share well, even after 10 years! :) )

Discovered my sleep issue?

So, I have had sleep issues for awhile. After about a year of just not sleeping well, I went and saw a sleep specialist, had a sleep study, etc. I have mild sleep apnea and also restless leg syndrome. I take medication for the RLS and that seems fine (I never understood why I couldn't get my legs comfortable at move theaters, but this explains it!!). I had surgery for the sleep apnea and that helped some, but didn't do away with it completely, so I have a cpap. Not crazy about it and only use it sometimes.

I also had a lot of trouble failing sleep, so I take Ambien. I am tired of taking that, so I am going to see the sleep doc to figure something else out, but it works for the time being. So, I have noticed that I am just tired--even if I do all of the things that I am "supposed" to do, and my breathing, etc. looked fine on the last sleep test.

So, I conducted a bit of an experiment this week--well, I didn't intend for it to be one, but I found results, so let's say it was an experiment :) I slept upstairs in the guest room most of the week, and I slept SO well! I woke up early on my own and felt refreshed and got through the whole day without getting tired, etc. I was just telling Gess on Wed. how much better I was feeling and thought maybe it was sleep or it could be Vit. D levels (since I was really really low before and have been on the supplements for over a month). Then, last night I slept in our regular bed with Gess. This morning I woke up and was SO tired. I remember him waking me up a few times (he is not feeling well and on pain medications again), so really I think that he is disturbing my sleep. He clears his throat a lot at night and moans and talks, etc.

Of course, this leads to a dilemma: what to do! I want to just sleep upstairs in the guest bed :) But he doesn't like that. But, I need my sleep! I want him to go and have a sleep test to see what is going on. If he is waking me up a million times he can't be getting good sleep either. He agrees, but for whatever reason, wants to put it off. Hmmmm...

Another rough one

We just had another rough discussion...He actually said the words "I am dying."  I don't know what is going on with his body; what is happening that he isn't telling me.  He did say that his lungs hurt.  He has been bleeding off and on as well.  I think that he is feeling the progression of the disease and scared.  It is so hard to be so intimately affected by this but at the same time to be clueless.  I mean I have been through ups and downs with this for 10 years.  I recognize the difference in coughs and other signs that something is veering off course, but I don't know what it is like to struggle to breathe.  I don't know what is like to have pain grip my lungs.  

With this there are the two sides, the physical and the emotional.  He is going through a lot of both right now and I am watching, unable to do anything.  And at the same time I am struggling myself.  Today when it was just one of those days when I was tired of everything being so difficult.  He has been especially short and cranky--probably a product of not feeling well and also trying to deal with it mentally, and there are days when I just feel like I am at the end of my rope with that, and today was one of those days.  Does that make me a bad person?  A bad wife? 

Rough night

Last night was a rough night. I am still entirely sure what happened. I was upstairs doing homework and G called me down stairs. When I got there he was sitting on the couch with Beauty and said "Beauty is dying," and then started to cry. That was my cue to sit down and hug him and assure him that things were okay. He doesn't cry--he has the strong adversion to it. So, if he does--it really gets my attention (this is in contrast to me, who cries a lot).

I never know what I am supposed to say at times like these. I asked him why he thought that, and he said something about her being really thirsty and not eating in the same manner she always does. With the water--we started using a bowl that is really small compared to the mondo one we used to use...so it looks like she is drinking a lot because we have to refill it all the time (big bowl is back too, not sure why G hasn't been using it). So, I am confident that she is not really thirsty. And with the food, I have no idea what he is talking about. She still will eat anything that you put in front of her and try to get more if she think that she can. But, I figured now was not the time to point these things out, so I didn't.

I just told him that Beauty seems very happy...and as if on cue she ran over and grabbed her new favorite toy and brought it over to play with him.  After a bit he said to Beauty, "You and I are alike, we are both dying and don't want others to know."  

Man...I don't know what is going on with him!  I just sat with him for while and he calmed down.  There are times when CF is so hard.  I can't even imagine what is going through his head when he thinks about these things, and I don't know what, if anything, I can do to help.  I wish that I could take just a little bit of the pain away from him.