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.  

Bad Day

Today was trial day for pain medication number 1. It didn't go very well. We went to the pain clinic and took a dose of morphine. Within 25 minutes he had hives. The doctor was wrong when he told us before that if something happened they could just take him back, etc. So, we had to go to the ER. We brought benadryl with us, so he took that. The ER was a mess and eventually Gess started feeling better (once the benadryl kicked in), so we left before he went back. So, basically the day was a wash. He feels like crap. Not sure how this is going to go.

Also, found out that he woke up this morning bleeding.

So not a good CF day.

Cystic What?

The story of us continues...

So we had speech class together and would chat and laugh and then all of a sudden he didn't show up to class for a few days.  I mentioned it to a mutual friend and he told me that Gess was in the hospital.  I was shocked.  At Bible study later I mentioned it and the chaplain of our college said in a nonchalant way "Oh, he has cystic fibrosis."  I had never even heard the term before.  

The next day some of us decided that we should go to the hospital to visit.  We met in the college student center and were getting ready to leave when Gess walked in the door.  It was shocking.  He didn't look sick.  I had heard that he was bleeding from his lungs, which I thought was really serious...so to say that I was confused, is to put it mildly.

I did some research on the internet--but back in '97 the internet wasn't anything like it is now.  I asked Gess about it and he told me the basics.  He assured me that he was healthy and going to live longer than me.  And for some reason I accepted that without question.  

Now that I think back on it, I can't believe that I accepted CF so easily.  Before long I thought that coughing up blood was "normal" for Gess.  It scared me, but it didn't freak me out like it seems like it should have.  

Now that I think about it I think that I just wanted to believe that it was "nothing." I loved him and that was it.   I was 19 years old and terribly naive.  But maybe that was a good thing.  I enjoyed being young and in love and didn't feel bogged down by CF.  Is that really a bad thing?

Our Story--how we met

It is fun to write "our story" sometimes, so I figured I would fill in little pieces every now and then. But I jumped right to engagement! So I figured I would take a step back.

Gess and I met in 1997 or so at Northwest Nazarene University in Nampa, Idaho. We have different recollections of the first time we met. We had a mutual friend who Gess remembers introducing us (and that friend's comment about how "well endowed" I was). I remember a slightly less than ideal meeting. We were in the campus cafeteria with a bunch of friends. Everyone else finished and had to go to class, but Gess and I just go there so we stayed there at the table alone. But he ignored me. The whole time. Reading Gun and Ammo magazines. I thought that he was quite a jerk!

Not sure how long it was from them until our next significant encounter...but that one was more pleasant. We ended up in the same Speech Class (you know, where you learn pubic speaking). It was the first day of class and I sat near the front, Gess in the back. Our teacher was a piece of work--who ever heard of a "valley girl" teaching people how to speak?? All I remember is Gess making some smart-ass comment and me turning back and smiling at him. I think his return smile made me blush :)

As the semester progressed, Gess moved from the back of the classroom to eventually sit right next to me. He also started to bring me chocolates and leave them on my desk. Of course, he made me laugh every day. Who would have known that speech class would have started something still going after 10 years??

Clinic Visit

We had a clinic visit this morning and it went pretty well. We decided awhile back to ask to see a new doctor, as things were just not working out with the other doctor. I am SO glad that we did! This appointment went so much better and I feel like we got more information in the 30 minutes we spent with this doc than we have in the years we have seen the other.

Gess's weight was up a bit--which is great. It is still not as high as he wants it to be, but at least it is going in the right direction. His FEV1% was the same as it has been for awhile--so he has a new baseline. We aren't happy with that (it is 43%), but it is what it is.

He has been consistently doing his treatments once a day and it going to try to move to doing them twice a day. He struggles with that move because of the time it takes and also because of how they make him feel. But, he is coming around!

We also talked to the doctor about the lung bleeding. It was nice to hear that this doctor will really go to bat for Gess with interventional radiology if necessary. He also said that he could send Gess to another hospital if necessary (the back story on this is that Gess has had 8 or 9 embolizations and the IR folks at the current hospital do not want to do any more on him. The last one was a huge fight to get them to do it.). It was nice to hear that this doctor will be an advocate for him.

This doc also stressed the importance of exercise, which is great to hear. I get tired of being the only one telling Gess that :)

So, we both left appointment feeling pretty good. (Oh, and this doctor is going to order the Ambry genetic testing so Gess can find out his second mutation).

After CF clinic we went to the Pain Management clinic. That was also an encouraging appointment. The doctor there is going to try to help find something non-IV that can help with the pain when it comes. Gess has so many listed "allergies" but it isn't listed on what that actually means. So on Friday we are going to the pain clinic, Gess is going to take a dose of morphine and then we will wait there to see if he has a reaction of any type. They want to do this while he is healthy, and this gives us a controlled setting so that he is already there if something goes wrong. The doctor is also going to try out a couple of other medications (non-narcatic) that will hopefully help. The CF doctor also was optimistic about the pain and said that just because he has this pain with his exacerbations, it doesn't mean that he will end up with chronic pain. So I think that was a relief.

So...all in all it was a productive and reassuring visit today!

Our story--the engagement

So...I am feeling a bit sentimental tonight, so I thought that I would tell my engagement story. I had been dating Gess for a year. It was our 1 year anniversary and Gess told me that he had a job interview in Boise so that we would go out for lunch after. He talked to my professor (the joys of a small college) and got me excused from the quiz. We drove into Boise (we lived in Nampa at the time, which is about 20 minutes away). He told me that we had some time before his interview (which was supposedly at Home Depot) so we would go to the rose garden that we liked to go to. So, we went and walked around. He was being sweet and stopped us in front of a particular rose bush--the Singing in the Rain roses. Then he got down on one knee and proposed. I said yes (of course), and then he pointed out that one of his professors was a little ways away videotaping the proposal. So sweet! After that, the professor took some pictures of us around the garden (see them below).

After that Gess said that he really did need to go to the interview and we got in the car and drove off. He "got lost" and we ended up at the Boise Airport. He told me that there was one more surprise in the airport, so we went inside. We got through security (after I showed off my bling to the security checkers of course!) and went to one of the gates (this was pre-9/11 and the changes in security). We sat there for awhile and then there was a call for a flight to Seattle. Gess stood up and said "That's us!" He had booked us on a flight to Seattle for the day. I was so excited.

He wanted it to be special so he rented a Town Car--not the best car for Seattle :) I remember him trying to parallel park that thing :) Anyway, he had arranged for us to meet his cousins for coffee. After that we went to downtown Seattle and just walked around. Then we had dinner at Palisade. It was a great dinner and a beautiful location.

Then we got back on the plane and flew back to Seattle. The next day, half of the college knew about the engagement, so it was easy for me to show off my ring and talk about the story.

Isn't he sweet??? :)

Sleep

I have pretty much slept the entire day. We slept in--really really late for us. We finally got out of bed around 11! Then we went to breakfast at this new place (not that great, but okay. we did spot Michael Winters who was Taylor on Gilmore Girls if anyone watched that...he must live in my neighborhood :) ). We came home after that and I was exhausted so I decided to take a nap. I woke up 5 hours later!! Holy moly! It was a long long week with lots of work. Plus one night I didn't get much sleep. So obviously I was just exhausted.

I do feel exhausted. Feeling overly overwhelmed (how redundant is that!). I just feel like there is too much--too much to do, too much I want to do, too much I don't want to do, too much I have to do. I need to find a way to pare this down.

Mixed Bag

It seems like everything with CF comes with a mixed bag--good things and bad.  This weekend was one of those.  Last week Gess finished his round of IV antibiotics and seems to be feeling better.  I am feeling better too--maybe it was the Vit D deficiency!  Work has been insane, but we are coping and have been generally doing well.  

So we wake up on Saturday morning and Gess says the "W" word to Beauty, so we got up and headed over to this new artisan bakery down the street.  The line there was was too long, so we opted for this great little neighborhood cafe that has a Moroccan flair and a couple of tables outside.  It was the perfect fall day, with the sun shining.  We had a great brunch. I had their special fresh toast made with sweet potato bread and nuts.  Gess went to the L side of the menu and had a Lamb and Brie sandwich, with turkey pumpkin soup.  I sat there thinking about what a perfect fall morning that was.  Gess, Beauty, and me sitting at a local cafe, eating yummy food while still in PJs and soaking in a little Vitamin D.  It was a lovely though.  I smiled.  I closed my eyes and felt the sun upon my face.  We left in a good mood....but within about a block, Gess started coughing up blood.  WTF!  He just finished IV abx!  3 full weeks!  We have PLANS for the weekend.  Ugggghhhh.  I hate when that happens!  He is okay, his lungs are hurting now.  We still had our Pumpkin Party.  But can't there ever just be a day when things can be "perfect"?  A day without vomiting or blood or crying.  Just on freakin day???? 

Feel like I dropped off...

the face of the earth! I have had very little time or energy for blogging or even the internet in general (for fun). I have basically been working and sleeping and studying. I am feeling better, but still exhausted. Work has all of a sudden got me swamped...and I am still trying to figure this school and work full time thing. And...did I tell you that I am writing a book in 30 days next month? Yikes!! I am CRAZY!

Low Vitamin D

My doctor called and the only thing that showed up on my tests was a really low vitamin D level. So, I have to take a supplement for 2 months. There was also a trace of blood in my urine, so I have to get another test in 3 weeks.

I feel less "dizzy" today but still exhausted (even with 10 hours of sleep). Hopefully either the supplement helps or I just get better!

Blood Draw Fiasco

So, here's what happened during G's blood draw yesterday. He has been on tobra, and so the clinic wants to monitor his levels very closely. (Although, they d/c-ed the tobra yesterday, so this was a big totally unnecessary mess!). He is supposed to have levels taken 2 hours post infusion, and then 6 hours post infusion. The options given to him by the home health folks were 1) have the draw in a work conference room or 2) go to a lab place to have it done. There is no way G would go with the first option, so he went to the lab.

He gets there and the people work there have NO IDEA how to draw blood from a port. One of the great things about having a port is that he doesn't have to get poked a bunch of times. So, the nurse calls in the more senior nurse to have her do it, and she says, "yeah, I can do it, let me get a needle." You don't need a needle to draw the blood. Apparently she comes back with a 2 inch needle, so G shows her how to access the line with a needleless syringe. Then, he realizes that she isn't going to "waste" any blood....which you need to do to clear out the line...so he shows here that.

So, she finishes getting the blood, removes the syringe from the port line and says "Okay, all done." She didn't flush the line--which you have to do to keep it from clotting. So, G reminds her of that and she says "what?" He explains it to her again and she says that they don't have any saline to flush it with. G started to panic a bit and ran to his car to see if he had one there. No luck. So the nurse runs next door and comes back with something she thinks with work--apparently because it has saline in it. It was eye wash of some sort. G told her that she could NOT put that in his port and promptly got out of there!

He sped back to the office and flushed his line. When he went back for the second draw he didn't let them touch his port at all--he took the needle instead!

I seriously cannot believe that the home health people sent him to a place that has no idea what they are doing! Dealing with these health care people really keeps you on your toes!

Lots of test, not many answers

So, I am not feeling well. At all. I have been feeling really tired and also a bit on the dizzy side (no blonde jokes please!). I thought that it would just go away, but it hasn't for about three weeks, so I decided to make an appointment to see the doctor (thanks for the gentle pushing focus in chat last night!). I called my doc this morning at 8:00 am, and was able to get an appointment for 9:45 am. I got there and describe all of the stuff that was going on and his first reaction was, "Sounds like you are pregnant." Man, do I hate that. He is the one that ordered Gess's test to make sure that he is in the same boat as 98% of men with CF--and he is. That is a hard thing for me to deal with--so I hate when I hear "Maybe you are pregnant" or "Sounds like you are pregnant" or whatever. Not his fault--just a sensitive subject for me. (He ran the test just in case, and it was negative--which makes my heart sink for some reason, even if I knew that it would be that way).

Anyway...also checked out my sinuses and ears and they are all clear. He says I could be anemic (good call Fred), but that I don't look like I am anemic. I left various samples with the lab, and I am supposed to find out the results on Friday.

So, all I know is that it doesn't appear to be the "usual" suspects.

I hope that he figures out what is going on and that there is an easy fix. As my good friend T put it, "You;ve ahd too much happen already lately." So, I am just taking it one day at a time and hope that there is something that can be done. I am exhausted. I sleep, but am still tired. And, it is making me a bit grumpy (or maybe more than a bit). And did I mention that I am tired?

And since I am updating...

Gess had quite a fiasco with a blood draw yesterday (that deserves it own blog post, so you'll have to wait for the whole story). The docs are continuing the cefaphime for another week, but discounting the tobra. He seems to be feeling a bit better, but the progress on that is slow.

Beauty's eye/face is getting better--it is not back to 100% normal, but the swelling is going down (she woke up yesterday morning with a swollen face--vet said to give benedryl). She has an ultrasound next week to see if the cancer has come back.

Man...we are one mess of a family!!

Husband talked to his mom...

And it did not go well.  The back story is that she sent us a horribly insensitive letter saying that she was so glad that we dealt with his CF so she was free to do "her own thing."  This was a few weeks ago and the weight of that letter and a lot of other past things that she has said have continued to bother us.  I was going to talk to her about it, but then G decided that he wanted to do it.  So he decided to do it last night on his way home from work.  I wasn't there so I didn't hear it, but he was extremely upset.  Apparently she doesn't see how she has done anything wrong.  She also reminded him of other things--like when he was in the ICU fighting for his life and she called because "she needed to say her good-byes."  Seriously, this woman has no tact whatsoever and just doesn't "get it."  All of her comments are so focused on herself--it is all about her needs.  

The list of this things is growing longer and frustrating beyond end!   It is so hard to see him hurting so much for this stuff.  I guess it is times like this when I am thankful that she lives so far away and we don't have to deal with her on a regular basis.  The thing that worries me a lot is that when things do get worse with the CF, she is not only not going to be a support, but in fact she is going to be a considerable liability. 

What a week!

Thank goodness it is Friday!  Man, what a crazy week. Nothing specific happened, but I have just had a rough week.  I ended up getting sick this week and feel really overwhelmed.  I am on strict "relaxation" this weekend, so hopefully that will help! 

I feel really helpless today. Nothing specific is going on today with Gess, but I have a friend who is in crisis. I spend an hour and a half on the phone with her trying to encourage her and talk her through some issues that she is having. Then I just read a blog by a woman whose husband has CF, who is really struggling and I needed comment and say something, but I just felt that everything that I had to offer was so inadequate. I see so much struggling around me right now and so much pain and there is nothing I can do to make it easier. I can listen and talk...but at the end of the day, CF is still there, relationship issues are still there, pain and hurt and sorrow are still there. I just feel like I am so helpless in these situations. I want to help. I want to "fix" things. But I just can't. And it sucks. Why do I feel the need to save the world and at the same time the unshakable feeling of being completely unable to do anything to help? Ughhhh.

Pain Management

Today Gess went to the pain management.  I had a PT appointment so I couldn't go along.  He said that it went really well and that the doctor was very nice and understanding and confident that they could find something to treat the pain and make him feel less loopy.  I guess the procedure is that the pain specialist will make notes for the CF folks and then the CF folks will respond to those.  We have clinic on Oct. 27th and also see the pain doc that same day.  Gess seemed relieved to be heard and hopefully that something good will come of this.  So that is the good news for the day!

Today

I feel like I can't concentrate on anything today. I think that this week has just taken a toll on me.

About Gess--he is doing okay. He started the IV antibiotics and all seems well with that. The transition to the new home health people has seemed to go pretty smoothly, they came out to do a blood draw this morning. He went to the hand specialist today and got his broken hand looked at. They gave him this splint thing to wear (apparently they don't do casts anymore if you are an adult, they "trust" you to keep the thing on--I told Gess that he should ask for a cast since we both know that the doctors cannot trust him--but to no avail...he told me on the phone that he has a splint). The doctor said that this break isn't too bad, so hopefully it will heal up alright.

I am a bit tired today. Gess was up in the middle of the night, and kept me up. Then I got up super early to be at the gym at 5:00 am. Surprisingly I was awake and functioning. The workout went well. It was the first with my trainer since the back injury. So I am anxious to see how I feel tomorrow. So far, the back feels fine today. I am also going to get a massage in about an hour, so that will be good for the body!

I have a million things that I want to get done this weekend, so I am starting a list to keep myself focused and sane! The only commitment that we have so far is a housewarming tomorrow afternoon. So, in addition to that I am going to get some cleaning and organizing done and hopefully have some time left over for some crafting. I have found recently that if I don't think about what I want to do on the weekend in advance and make "plans" I end up wasting the time away doing things like surfing the internet. So, not this weekend. I am not going to go super strict, but I am going to set up some structure so I will hopefully have a good balance of productive and restful. We'll see how it goes!

Letter from MIL

So we get a card from my MIL today...here is how it starts:
"As I prepare for my trip tomorrow, I feel it is important to tell you how much I appreciate the way you handle the pain and health issues of your lives--freeing me to do my own thing like go on this trip."

WTF?!!!! Ummm...dear son, thanks for not burdening me with your CF so I can "do my own thing."?????


Ughhhh---I am having a crappy day!

ER Visit Update

Our really good friend R took Gess to the hospital last night. R was amazing! Gess has kept saying how well R handled it, etc. I think that it was really good for Gess to have R go--to see that there are other people in our lives that can be there to help and that doing it is not going to be harmful to them.

Apparently the ER docs ran some tests and took a chest x-ray etc., and nothing significant showed up. Oh, except for the broken hand! When the pain started Gess hit the wall in frustration--breaking his hand (again)! So that is another issue...

The ER doctor gave him the option of staying in the ER overnight to be watched or going home and calling the CF Clinic in the morning. He chose the later option and arrived home around 3 am. For some reason he was talkative and talked to me for about an hour. My last memory before falling back to sleep was him saying he was ordering me a gift online and not to open anything that comes for him in the mail...at least I think that is what he said :)

Anyway, he was able to get a bit of sleep and the pain seemed to subside some. It comes in bursts and he describes it as "spasms." He has been feeling pretty healthy. But then the bleeding this weekend and now this.

So I called the clinic this morning and talked to the nurse coordinator, who in turn talked to the doctor. They think that this is probably an exacerbation--but just not in its "typical" manifestation. So, they are starting him on IV antibiotics (tobra and cefaphime I think) and hoping that works.

Also, they asked us if we would be willing to switch home health companies, and we agreed, so hopefully the start up and this round of IVs will go smoothly.

And on a related note, when we rescheduling his last clinic appointment I simply asked that he be scheduled to see a different doctor, and thus far, that seems to have been enough to make a change--the nurse hasn't said anything about our reasons, etc. and we haven't really volunteered the information. But if this is it and he now has a new doctor, I am very relieved and happy! We'll see how it goes. He is scheduled for clinic in late October.

Anyway, thanks to all for your support and encouragement! The light of day has made me feel better about what happened last night too.

Failure

I feel so awful right now.  I don't sleep, so my sleep doctor gives me sleeping pills to use in conjunction with CPAP (I have very mild sleep apnea). I hate the CPAP, and so have never made transition to using just that and other non-medication ways to fix the sleep issues. S0--with my doctor's blessing--I take ambein every night.  It works great for me.

Except tonight.

About 15 minutes after I took it--and while I was already starting to get drowsy--Gess had a huge attack of lung pain.  I have never seen him like this before.  He was in tears and tensing up, and just looked horrible.  He said "I need to go to the ER" so I jumped up as always to get out the door and then he said no, I want to wait it out a bit.

Then he remember that I just took my pill and would not be able to drive him.  But he needed to go.  So, I told him that I was calling his friend or an ambulance.  He said the friend.  I know that the friend is happy to be able to help.  But it crushed Gess to have to ask.  To have his friend see him this way.  A course, when the friend got here, I was already crying.  I feel like it is my fault.  If I hadn't taken the pill then I could have driven him.  But now, he is hurting because he is exposing his friend to this.  His friend is probably worried because this is his first exposure to this and I am going to be passed out, incapable of doing anything.  I feel horrible...but at the same time I NEED to be able to sleep.  I went for a year without sleeping well, and I could hardly function. 

So now I will fall asleep and have fitfull dreams wondering what is going on at the hospital.  Hopefully I can get in a couple of hours and be awake enough to go and take the friends place.

Damn it!

Hemo

So Gess is bleeding again. It started yesterday (Saturday). He had a big coughing fit and it started. It stopped pretty quickly after, but continued in spurts through out the day. He prescribed himself bed rest for the rest of the weekend, and has been pretty good about keeping to that--even when his friend had an extra football ticket.

The bleeding scares me. We have been down that road many, many times before. But it seems different now. When I met him, he bled a lot. He would go in when the bleeding wouldn't stop. Sometimes there would be a lot of blood. Once he a 2-liter bottle nearly half way en route to the hospital. He has had 7 or 8 embolizations--so many I have lost count. But the last one is what scares the crap out of me. It was October 2004. He bled so much. They finally decided to do an embolization. I was out home, trying to get some sleep (on his orders), when I got a call--he was bleeding and they were taking him down to IR for an embolization. I got dressed and to the hospital as quickly as I could, but he was gone by the time I arrived. I still remember the way the room looked. Blood on the white sheets. Blood on the floor. Lots in a basin that he was using for a receptacle. Blood, way too much blood.

I don't know how long the procedure lasted--but it was a long time. It was a really difficult procedure--his lungs being so damaged from all of the prior embolizations. But he made it out. He went to the ICU for recovery. This part I knew how to deal with. He lays down for 2 hours so that the access point in his leg can clot off. I check the bandage near his groin every 10 minutes or so to make sure there was no bleeding. We were about 2 minutes from being released from ICU when it started again. More bleeding. Lots of blood. He had to stay in the ICU. Later--I don't know how many hours or even days--he had another huge bled--it wouldn't stop. They had to vent him to preserve the airway.

He looked so scared. He asked me if his life insurance was in order. He went to sleep. For 3 days.

Since then he hasn't had very many bleeds--and the only ones are small. But this weekend scares me. More bleeding that "usual". More frequently. He says that he won't be able to make it through another bleed like that "one." So what if the "one" comes again?

Update on us

I am tired! It has been a really long week. We had some family in town last weekend and that was completely emotionally draining, so I started off the week already worn out. I am injured--apparently I have a budging disc or something wrecking havoc on my lower back/leg. I started PT this week, which has seemed to help. I am also continuing with massage/acupuncture to try to get it all sorted out. I haven't been able to work out though, which is annoying. I actually want to go to the gym and can't. I just keep reminding myself that I am doing what I need to do now, so that I will stay better...instead of doing what I want to do now and making it worse.

Gess seems to be feeling okay--though honestly it is really hard to tell most of the time. He has been working a lot, so I feel like we never really see each other during the week. When we both get home we are just tired and really don't want much interaction. I hate weeks like this because of that. He is going to talk to work about doing 4 ten hour shifts instead of 5 days a week, and he thinks that nearly everyone is on board. That will be really nice for him, since he works long days already. I think that 3 days off in a row will be good for his health. So we'll see.

Beauty is doing well--nothing new on her front. We have to schedule her next ultrasound to see if the cancer is back.

Tonight I am going out with a girlfriend, which should be fun. We are going to go to the art museum tomorrow, which I am really looking forward to.

We have a clinic appointment on Monday--which I am not looking forward to. I seriously hate going to clinic appointments. Gess hates them too, so it is just a really crappy way to spend 4 hours. Oh well.

Sorry for the most boring blog post ever, but I felt like I need to do something :)

Family Ties

What it is about blood that makes one feel like she is eternally obligated to save everyone?  Where is the point when one can say "enough" and walk away?  And can you ever do that without feeling guilt?

I suppose that the reasoning for sticking by family is that family is supposed to be there for you no matter what--so when push comes to shove, you are not alone.  You belong somewhere.  But what if that is not the case?  What is it that compels me to continue to fight to be a part of a family when I really am not wanted and really do not belong?  Where the only thing that I have in common when them is DNA?

I have thought a lot about this and today I say "I am done." But can I really walk away?  Can I get over my feelings of obligation and responsibility and be free?  Can I really choose to focus on my "real" family--Gessner and Beauty?  Would it make me a bad person? 

Bad CF day

Today has been a bad day on the CF front...nothing "big", but I know that it was a rough day for Gess. He told me that he has been bleeding pretty regularly. Not huge amounts, but bleeding none the less. He feels like crap. And he admitted that he is afraid that things are on the decline and afraid that he is going to have limit activities and such. He is afraid to really "try" to fight the CF because if it doesn't work, then what is left...

I don't know what to say to him. All I can say is we will do it and do what we can do to make now the best it can be. But man is it hard!

I hate fucking CF!

Confession: Baby Blues

I am having one of those "I-want-a-baby-so-bad-I-could-scream" phases right now. I go through more often than I would like, but it does seem like it has been awhile since the last one. I have been enjoying that good things about not being a mom--the quiet, the freedom, etc. But I feel like I am being bombarded with pregnant women and it is getting to me. It is so strange to me how strong these urges can be. I mean, I can intellectually think about the issue and say "Having kids doesn't make sense" or "Look at all the things you can do because you don't have kids" or whatever, but a pregnant woman can walk past me and I nearly burst into tears. It has to be biology. There is just no way around it! My would I want to be pregnant and have all that extra responsibility? It HAS to be biology. But knowing that doesn't make these times any easier. On days like these I feel like I am "broken" because I am not a mother--that there is something wrong with me and I am less than a "full" woman because of it. Again, the mind knows that this is completely not true...but the thoughts still creep in.

Now, please do not comment and say "If it is meant to be it will happen" or "You could always adopt" or something like that. I am not looking for a solution to a "problem" just trying to say what I am feeling out loud in hopes that it helps the phase pass. I know that there are other options and I know that IVF is an option too. We just don't know that we want to have a child (biologically or otherwise) with Gess having CF. It is just really hard to think of bringing a child into that situation. But on the other hand, it hard for me to accept that it will never be.

the witness

Everyone that is affected by CF witnesses so much suffering. There are so many people with CF suffering right now and it breaks my heart. I know that there will never been anything that anyone can say to make the suffering go away or make it make sense. My heart is heavy, but I can't find the words...

Self-Preservation or....

being a bitch. Not entirely sure, but I am calling it self-preservation!

Despite my briefly feeling better yesterday, I am a complete and utter mess! This last round of stuff just really threw me for a loop and I find myself falling back into my old ways of setting ridiculously high standards for myself, which I of course cannot meet. I am not sure where these ideas that I have come from, but basically I get this notion of what a "good wife," or "good attorney," or "good person" means, and then everything that I do falls miserably short of that. For example, in my deranged mind, as a good wife, I should happily attend to my husband's ever need, want, and whim while he is sick without being tired or frustrated or whatever. Also, I should be able to go to the gym religiously, have a spotless house, put in extra hours at the office, take care of all of my crazy family members, take care of my husband and dog, and then still manage to devote adequate time to the things I like to do. Of course, this does not happen and because of it, I have been feeling like an incredible failure lately. I hear myself saying "I hate you" to myself over and over, which is obviously not that fun.

I think that I hit bottom today and just basically felt like a big, fat, ugly, horrible, bad, mess of a person. Thankfully I had a therapy appointment and was able to get a good reality check and reminder that I am being incredibly harsh with myself. She also encouraged me to really try to take care of myself...which brings me to the actual purpose of this entry:

My mother-in-law, sister-in-law, and niece are coming to visit from out of town this weekend. I was sort of looking forward to it since my sister-in-law and I have really repaired our relationship, but then all of this stuff hit me, so I am really tired and just not wanting to deal with people. One of Gess's cousins lives locally with his family so we are all supposed to get together. Gess and I decided that because of everything that is going on, we would prefer to keep the visit semi-short (the last thing that we want to do is to feel stuck for hours--especially since they have a tendency to talk about religious stuff and we just don't want to go there right now), so we suggested meeting at a kid-friendly restaurant for dinner (did I mention that the cousin has 2 kids that are not that well-behaved?). In response the cousin suggested an alternative of going to their house, but said that the restaurant idea was okay. So, I said that we wanted to meet at the restaurant and set the time, etc. Then yesterday I get the email saying, "No we will just have you guys over to dinner at our place" and then gave the reason of wanting the SIL to see something at the house, etc. Well, that made me a bit upset and I really didn't want to go and neither does Gess...so (and here is the self-preservation or bitchy part), I responded back today that Gess and I wouldn't be up for that but that we would make sure that the visiting family gets there!

I think that I am still a bit in shock that I did that since I am usually so willing to bend over backwards to make other people comfortable and totally putting everyone else's desires before my own. But, I really think that it would be stressful for us to go, so I think that it is the best thing. So there, family deal with it!

Breaking Out

I feel like I am coming out of my shell a bit today.  When something like a hospitalization happens, I draw into myself.  Part of it if self-preservation.  I am like the cartoon turtle that springs into his shell when danger comes near.  When Gess is sick, I do what I need to do to get through that situation.  And I find that when I do that I tend to isolate myself.  I really thought about it this week and with some other posts that I wrote, and some of the isolation related to CF is self-imposed.  I think that part of it is because if I see people, I have to explain what is going on and what is happening and how I am doing, etc.  The simple fact of the matter is that sometimes I do not want to think about it.  If I am not standing in the hospital room, I don't want to think about it.  I want to zone out--and act of self-preservation--and that means pulling away from friends.  

Today was the first day that I felt like "I" was back again--if only for a bit.  A friend saw me and said that I was "perky."  The mood didn't last the entire day, but I definitely felt better. It is a process...a journey.  One step.  One moment.

The Voices Inside My Head

The voices inside my head just won't stop today. I am a thinker--and no, I am not full of myself or calling myself an intellectual or anything pompous, I am just pointing out that I devote a lot of energy to thinking about things--and often over thinking things. I will get something in my head, and then every time my mind can break away from the what it is supposed to be doing (mostly likely work), it will race right back to that subject. I play out scenarios, analyze every minute detail, and stew over things. In sum, I am neurotic.

Anyway, today has been particularly bad. There is nothing specific that is eating away at me. I just keep thinking about things. I feel like all my thoughts are internally focused and I find myself just "inside" a lot. It is annoying because I do have work to do. Also, none of my usual "tricks" are working today. I turned on the music. I shut my office door. I turned on the music and shut my office door. I smelled my essential oils. I took a walk and got a little bit of sunshine. I wrote out a short to do list and crossed everyone on it off. I wrote in my other blog. Still, I can't seem to keep from getting drawn back in to myself. It is like daydreaming, but not. It is like I am writing a memoir in my head. I recall things that happened and I tell them to myself in prose form. I am writing a book in my silly head.

Today it is not CF focused, which is actually a nice break. All of the hospital visits over the past weeks and also starting some fundraising, etc., has really kept CF at the forefront of my mind. But it is exhausting and it is nice to have a break, even if unintentional and if it is caused by my idiosyncrasies (let's just say I am "quirky" that sounds better than "clinically insane).

A breakdown

Thursday night I had a breakdown.  Thursday itself was stressful--running around to work, get Gess after discharge, pick up Beauty, etc.  I was exhausted, but couldn't go to sleep.  As soon as I put my head on the pillow, my mind would start to race. All I could think about was everything that I needed to get done.  I got up and did the things that you are supposed to do to combat that type of insomnia--do a few things, make a list, meditate, take a warm bath...but nothing worked.  Finally around 1 am I tried to go back to bed, but soon after laying down, I started to cry.  And not the little tiny tears---but the big, sobbing ones where your whole body shakes.  All I could think about is how Gessner is sick and how he has only been really "well" for about 2 weeks during the entire year.  It was a completely selfish moment--where I wonder if I can actually handle this day after day after day.  And then my thoughts quickly went to the fact that I need to make more money.  Because if I made more money, then Gessner could quit his job and just focus on his health.  Of course, he says that he has no desire to quit and I actually think that it will be really hard for him when he hits that place.  But on the other hand....if he wasn't working, could his health improve?  I put so much pressure on him to do things--I schedule dates with our friends, or get tickets to the opera, or like right now, I am decorating the house and trying to get it done before his family gets here next weekend.

So...I feel like a complete failure.  I cannot do my job well enough.  I cannot be a good enough wife.  I cannot even keep my house in order or get myself to the gym, or to lose weight.  I cannot do an of the things that I need to do.

These thoughts causes a lot of sobbing, even wailing.  Gess wanted to know what was going on, but I knew that the thoughts there were inside my head would not be good thoughts for him to here.  Finally I blurted out "You're sick!  Your lung functions are 43 percent.  You are sick every day and it isn't going to get any better."  It all just came out.  Those are my fears.  My fears that 43 is now the new baseline and wondering when the slide will start.  I don't know how I will deal with it when it comes.  Will I be capable of giving him what he needs?  Right now I feel woefully inadequately in all aspects of my life and my care of him.  I put too high of expectations on him and push him.  Why can't I push him to do less?  Why? 

And there are days when I can't stop thinking about the "when" and the "after."  It will come.  Come before it should.  My life will end as his does.  But I will be expected to carry on.  But how one does that is so unclear.  My whole life for the past 10 years has been intricately entwined with his.  We are a pair.  That is not to say that we aren't our own people as well....but we are a pair.  When are a couple and we have couple friends.  So when that day comes I will no longer be a couple and the dynamic with them will drastically change.  They will invite me because they don't want me to be alone.  But it won't work.  I will be lopsided, or missing a apart.

These thoughts engulfed me and I couldn't stop crying until I vomited.   Even then, I continued to cry....finally collapsing when I could not feel anymore.

Letter to CF.com moderator

I have found myself increasingly frustrated with the situation on the CF.com board and then I get angry that I am so upset about the situation. Something in me wants to scream! So, I wrote a letter. I am hesitant to post it. I don't know if I should. I don't know if I should send it to her. I don't know if I should just keep my mouth shut and move on. But there is something therapeutic about publishing your thoughts. It is like giving yourself a voice. So, for at least now, I might try to speak.



Dear Moderator,

I joined the forums at http://www.cysticfibrosis.com/ about a year ago. Although I have been an active participant since that time and have followed the "rules" of the site, my access has been terminated and my blog has been deleted, all without explanation. I tried to give you the benefit of the doubt and sent numerous emails requesting an explanation and allowing you to fix the error. But I have received no answer. Banning me from the site was without justification and is contrary to the stated mission of the forum, which is to provide support for those affected by CF.

Perhaps this was simply a business decision. You decided that for whatever reason some members of the forum were no longer welcome and that it would not hurt your business to simply delete their content and deny them access to the site. You may think that we will just go away and that new people will happen upon the site, taking our places and that your sponsors will not notice.


The truth is, however, that your decision to ban people from the site has personally affected people. People went to that site for support. CF is a difficult and very isolating disease. The forum was a great place for persons with CF and their families to share information and get support, when that is so hard to do in the "real world." Perhaps you cannot appreciate that as you are not affected by CF. Or maybe you just don't care about the people that your site is allegedly designed to support. I still cannot understand how the people that you have banned could have negatively affected your business--they were the top contributors and visitors to your site. The banned members were active in chat, and often the only members there. Look at the posts and the blogs--a lot of the information and support is provided by those people you ousted. So, even on a business level, your actions do not make sense.


I did not see the original posts that are rumored to have caused the bannings. But I saw posts that apparently caused bannings of subsequent members--including myself--and there was nothing offensive or inappropriate about them. Perhaps even more disturbing is the complete lack of explanation for your actions. Accounts and blogs were simply deleted. Emails are left unanswered. No rationale or justification is given. I suppose you hope that we will just all go away quietly, or sign up under a different alias, or beg you to restore our access. I suppose you see us as usernames that can easily be deleted and that a replacement will come along soon. But there are people behind those usersnames. People that are already dealing with a difficult disease and now are spending energy dealing with being ousted from a source of support.

I don't care that I am not part of your site any longer. In fact, this situation has proven to me exactly why no one should be a part of your site. But what bothers me is that you advertise your site as a place of support and refuge for people, but in reality it is simply a tool for marketing--a commercial enterprise. You clearly do not care about the members of the site, yet attempt to paint yourself as doing so. There is nothing wrong with being a business, it is your job and part of that job is controlling content on your site. But you have crossed the line. Your actions have hurt people and those actions appear to be deliberate and without any sort of justification or even discernible rationale. As a business that might not matter, but as a person you should be deeply ashamed.

Blondelawyer

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.  

Isolation

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.

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?

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!

Lisa