In Other News...

...the drama with my sister continues. Yesterday (of all days) I find out that her husband hit my niece and caused a bloody nose. My sister downplayed it by saying that he meant to hit her in the arm and she moved so she got hit in the face instead--hellllllooo!! He HIT her. Oh, and not with his hand, but with his computer keyboard. Nice, I know. Her husband also hit her and has been threatening to do it more often. Now, to me, this seems like a sign to get out...but has she? Nope. Did she call the police when he hit her? Nope. Hit my niece? Nope. Seriously?? All I know is that guy better hope he never sees me again.

So, I told my sister that she needs to get out of the house right now--she has been talking about it for awhile anyway, but can't find a place to go. After hearing about the niece yesterday I decided that I had to report it. My sister is not going to do anything. So...I called CPS. It was not a good experience. The guy on the phone was a tool. He even tried to dissuade me from reporting by telling me that my sister might be a "suspect" since she is letting it happen. I told him that I didn't care--the kids are in danger. Geez. As far as I know, CPS hasn't done anything, and honestly that doesn't surprise me. Even though I am 100% sure that my nieces and nephew would be better off with complete strangers than they are with my sister right now, it was still a very difficult call to make. I am not sure what it was about it, but it was hard.

Today my sister sent me another email with the same sort of complaints...no place has emergency openings, she has no money for a storage unit--that's right, a STORAGE UNIT! I emailed her and said all of that is just stuff...take your kids and get out of there. All while I am sitting in the ICU watching my husband.

On the way home from the hospital I started to doubt my stance. My sister has hinted (very strongly) that she wants us to give her money--because she needs someone to pay $300 a month to help supplement the rent, etc. I have refused in my mind to even go there. Because honestly I don't believe that all of the money in the world would get her to make the move. I don't think that it is lack of $ that is stopping her...she just isn't ready and willing to make the necessary changes. But on the way home I started to doubt this...what if I am wrong? What if it is just a little money that would make the difference? I know that it isn't...but....ugggghhhhh. I can't believe how much guilt and stress I have over this situation. ***Sigh***

Still in ICU

But no more bleeding...so we are just sitting around. They talked
about discharging him tomorrow. I am not sure how I feel about this.
I mean, I am always happy when he gets to come home, but at the same
time, I am afraid that the bleeding will start again and we will end
up back here.

Sitting in the ER again

Gess had multiple bleeding episodes today and so we are in the ER.
Thankfully our good friend Ta was available to sit with him for awhile
while I wrapped up some things at work. 7 hours later we are still
sitting here. The powers that be have decided to put him in the ICU so
that they can monitor him more closely. They are also alerting the
interventional radiologists in case they need to go in and stop the
bleeding overnight. Hopefully that won't happen and all of the doctors
can pow-wow in the morning.

I am exhausted but scared to go home. The bleeds haven't been huge but
cumulatively it has been about 3 cups. The last time he had a huge
bleed and surgery he ended up on a vent.

The weird thing about this is that he has been feeling better than he
has in months and now this. I don't know what is going on and that
makes it even more scary.

Happy Birthday Hubby!

Gess turns 32 today! It has been a rough day for him for some reason--not sure exactly what is going on and he doesn't want to talk about it. I am sure it is birthday related because he said that it would be better tomorrow. When I think about his birthdays I do have mixed feelings too, so maybe it is something similar to what he is thinking. Part of me is celebrating another year and saying "take that CF". But there is also a part that looks as it is one step closer to the end. I know that it is that way for everyone, but death seems so magnified in CF. Death feels more real. I think about the "median" age and watch as we approach it. 37 seems so far way, but also so close. I don't like to think about that number, yet find myself doing it.

On a happier note, we are having a party for Gess on Sat. It should be loads of fun--I'll post the details and pictures after we have it :)

Pain Clinic and stuff

So, about as soon as I posted my trying-to-look-on-the-bright-side post yesterday about insurance Gess called to tell me he had an episode of hemoptysis. Ughhh. He has been feeling better, with the exception of the pain. That is what is so weird about this. He is #1 bleeding and #2 in pain and he doesn't seem to have some active big lung thing going on. Usually the bleeding and pain come with an exacerbation. So, I don't know what the heck is going on, and it looks like the doctors don't either.

We did go to the pain clinic today and had a good visit. The pain had increased pretty significantly in both frequency and intensity, which is obviously a concern to everyone. The demoral doesn't work well for this really. So, now we are on the hunt for a better solution. The doctor wants him to try Pregabalin. He tried it once before and it made him "loopy" so he is not optimistic about this, but I am going to press him. We need to find something that works that he can tolerate. He left the clinic in a pretty foul mood, which I can understand. I know that in my mind, these changes are a progression of CF and are an idea of what is to come...which of course is not something we want to think about.

So...we'll see.

Up next, sleep study tomorrow night (which means I get a free Saturday night and the entire bed to myself!! :) ). Then gastric emptying study next week.

Oh, he is also participating in some research study and gets to use a portable spirometer. Pretty cool!

Thankful for good insurance

I was just opening some mail and open a benefits letter from our insurance company and noticed that Gess met his out-of-pocket max in February this year. The downside is that means we have paid a lot of money this year already. The upside is that we will pay less for the rest of the year. We still have office visit, ER, and prescription co-pays, which add up, but are much less than the 20% of the service charge for other stuff. I am so thankful that we have this type of medical coverage that allows Gess to get any treatment he needs without us worrying (too much) about the cost. But of course, with that comes the fear of losing health insurance for whatever reason, but we won't go there today ;)

Pain

Gess seems to be feeling better, lung-wise, but the pain is still a persistent issue.  It seems like at least once a week the pain gets so bad that he needs to take demoral.  I don't know what is causing the pain and I don't know how to fix it.  We see the pain clinic on Friday, but honestly I am pessimistic about their ability to figure out what is going on.  Is this what it is going to be like from now on?  There has to be another answer, but what?

Babies...

I know that people always say "life isn't fair"...and yeah, no fuckin' joke.  Sorry for the language, but just feeling a bit angry at the moment.  A couple weeks ago my mother told me that my brother is having another baby.  He just told me.  I guess I should be happy.  But really I feel bitter.  Oh, and he's getting married (again).  

Here's a little about my brother.  He was married for the first time when he was 16 years old.  They had to go to Idaho to get married because even with parental consent, 16 year-olds can't get married in Washington.  The girl was 20-something.  She was pregnant.  Baby number one.  They weren't together for that long. I am not sure what happened.  But they divorced, and baby-mama #1 has 2 or 3 more kids.  Surprisingly kid #1 seems to be really well behaved and adjusted.  Not sure how that happened...but maybe it is the same phenomena that happened to me, that got me out the white-trash world the rest of my family is stuck in.  Oh, yeah, I am not exaggerating, but that is for another blog.  

So, I didn't really talk to the bro for awhile, he was off doing his thing, I was in law school, etc.  Enter baby-mama #2.  She seemed nice to me, but everyone else in the family hated her.  I don't know what the deal was.  She was pregnant when I met her and they were engaged.  She was going to school to be a teacher.  Baby is born, I get a million pictures in the mail, all is good.  Then, she calls me one night hysterical saying that my brother left her and that she was pregnant again and didn't know what to do.  My mom said that she wasn't pregnant and she was just crazy, etc., etc.  

Maybe a couple of months ago my brother mentions something about going to see his "boys."  So I find out that baby-mama #2 was pregnant and there is another baby.  So...now there are 3.

My brother moves for another girl, loses his job, etc.  A mess.  Next thing I know, he moves again....for (surprise!) another girl.  Now, she is pregnant and they are getting married. 

WTF?  Haven't you heard of a condom?  Or the pill?  HELLLOOOO!  How do you think that you are EVER going to have any money if you are paying child support to at least 2 different baby-mamas?  And if this doesn't work out, make that 3.  

He is 24 years old.  Oh, and he never graduated from high school...did I forget to mention that?

It is no secret that I want to have kids, and that under the circumstances I probably will not.  Gess's health is not that good, and we all know that with CF it will just get worse.  Not the most cheery thought, but the reality.  And reality is what I must consider when thinking about a child's life.   So.  Let me get this straight.  I graduated from high school.  Then went to college and graduated.  Then I married the guy I love.  My "first" and only.  I went to law school.  I graduated.  I am a stud.  I have been married (to the same guy) for 10 frickin' years.  But I can't have children?  Yet, this 24 year old high school dropout gets baby #4??  What???  How does this make any sense at all?  

I am mostly okay with the no kids things.  At least some days.  In fact, today was a fine day.  Up until the 2 minute chat session I had with my brother.  And now I am sitting here wanting to scream and cry and eat a whole chocolate cake.  Stupid frickin' CF and stupid frickin' irresponsible people that can have kids at any moment.  Grrrr.  

Settled at home

Well, we finally got Gess home on Friday--no thanks to the morons at the UW pharmacy. One pharmacist went out of her way to help get it straightened out, so I am very thankful for her! The whole discharge took about 6 hours. Yeah, 6. Good thing I didn't have anything to do--like work! Ughhh...it was so frustrating! But it was definitely good to have Gess home, even though I was nervous about it. They discharged him without giving him any chest PT to make sure that he could tolerate it without bleeding. I don't get it. He needs to do PT (via vest at home) in order to keep his lungs as clear as possible. But if the PT results in bleeding, shouldn't they know that BEFORE they send him home?

He is on a trio of antibiotics right now. The cocktail de jour is minocycline (PO), meropenem (IV), and colistin (inhaled). Oh, and still on the Flagyl for the c diff. He is also on IV or IM demoral for the pain. He was pretty much out of it yesterday because of the pain meds. It is hard because it is not the in-bed-24-7 sort of out of it. It is walking around and forgetting everything and saying random things sort of out of it. And that scares me. I feel like I need to put him on a leash so that I can watch what he is doing and make sure he doesn't fall or do something else to hurt himself. He told me that he feel in the bathtub the other day, which of course, adds to my concerns. So, needless to say, yesterday was a pretty stressful day here.

He is off the demoral for now, so he is lucid, but grumpy. He says that he feels really weak and his muscles ache. He has lost about 15 pounds in the last month--15 that he didn't have to lose. So, today is going to be another low key day. He is napping right now, which is good. He said that he shouldn't sleep all day, but my opinion is that if he is tired he should sleep. His body needs to recover and he doesn't sleep well on the demoral.

I am vacillating between trying to relax and trying to get things done. I have a lot to do, but really don't have the energy to do it. Hospital stays take a lot out of me, but I think that the days at home when he is out of it take even more. My schedule is completely off too, which just doesn't help. I am pretty frustrated because I am supposed to be training for a marathon but between my shin issues and Gess's health stuff, I am just not getting very far. But, it definitely could be worse. I just need to try to keep things in perspective. Or hit something. :)

About to lose my cool

Man they must have complete idiots working at this place! The good
news is that Gess is being discharged. The bad news us that it is
taking hours and I am in a really bad mood now. Oh and did I mention
that I have a nasty sounding cough myself now?? Ughhhh!! Okay...vent
over (for now) :)

Hospital

Gess is admitted. It took f.o.r.e.v.e.r! He waited for a bed for about 12 hours. He is on fluids, pain meds, and meroperem. We are not sure what is going on, but hopefully the doctors will figure it out. He has not been feeling well for a long time and nothing seems to be helping. Normally I feel really stressed when he is in the hospital, but for some reason this time I am feeling less stressed. I know that the hospital is not a place where some miracle is going to happen, but I was so worried about him when he was here. I guess I felt helpless and nervous that something bad was going to happen on my "watch." So, we'll see. I hope that he doesn't come home sicker than when he went in and really hope that they can figure out what is amiss.

Thanks for all of the good thoughts :)

Sitting in the ER

Gess woke me up around 2 am and said he needed to go in. Of course if
he is volunteering to go in, it must be bad. He is SOB, vomiting,
hurting, and had some more hemoptisis. He is down getting a chest xray
right now. He will probably be admitted. **sigh**

Damn allergies

I have been trying to get on track with my allergy shot, especially
since summer is on its way. I had one today and after about 2 hours I
had a reaction. I hate it!! Ughhhh. Why can't I stay healthy :( we
have enough medical drama in our house without my issues.

Update

Not much to report over the last few days.  Gess is still not feeling well, but at least isn't bleeding (except a small one on Friday morning).  We aren't sure that the c. diff. is gone, so we will be talking to the docs tomorrow and he will probably go back on the antibiotics.  He was really frustrated with it all today--which I can understand.  He has been sick for way too long and he just doesn't seem to be getting any better.  

One plus is that he is cutting dairy out of his diet and thinks that he feels better and less congested.  So...we'll see. 

Fun times at the ER

Well not really of course. So, I get home from work last night around 6:00 and Gess gets home shortly after that. His lungs are hurting, so he wants to go grocery shopping to give him something else to think about. We head over to Fred Meyer and shop. Then we stop to grab something to eat and head home. As we pull into the driveway Gess says that he feels weird. His face is numb and his vision is off.

We get him inside and he says that he can't breath. Then he starts coughing up blood. So I say, "We are going to the ER, get in the car." I call my friend Ta to see if she can come and get Beauty since we have been gone all day, then head over to the ER. The bleeding stops, but there is lots of coughing which brings on vomiting. He is feeling better by the time we get to the ER (7 miles away), but goes in anyway.

He gets checked out--they do a chest x-ray and blood work. Everything looks the same as before. The pain in his lungs gets worse, so they give him some pain meds. The ER docs were great. They consulted with the pulmonary fellow on call and then asked my husband what he wanted to do. He said that he wanted to go home and they agreed with the plan since he was no longer bleeding and we live so close.

We finally get home around 1:45, put the groceries away and fall into bed. Gess is up and at work today against my wishes of course. The pulmonary fellow actually called this morning to follow up, which was a pleasant surprise. She talk to the nurse who is going to talk to the CF doctor and then we can go from there.

I really just don't know what is going on. The pain just won't go away. And then the bleeding--he has had some minor bleeds over the last several months, but this one was bigger (around 3/4 cup). He also just got off of antibiotics. What gives? Everyone seems perplexed and we are just plain frustrated. At least the ER visit went smoothly, all things considered.

We did have a crazy nurse. She said "I have to try to get this perpendicular. Oh...that is a big word." Gess and I were able to stifle our laughter until she left. But it might be an inside joke for a few days :) You gotta find anything amusing in these situations :)

Busy Day

We had a busy CF day yesterday. Luckily it went well for the most part.

First we had an early morning clinic visit to follow up with the doc about the c. diff and the pain. The doctor that we are seeing now is SO much better than the previous doctor. We talked a lot about the pain issue. The doctor says that Gess is sort of in an in-between phase with the pain---it is not quite chronic pain, but not quite acute either. The pain is more frequent and not necessarily tracking with a specific exacerbation.

He is going to send us back to the pain clinic and ask the pain specialists to look at this as more of a chronic pain issue to see if we can come up with a solution from that perspective. Previously the pain folks said that the demoral seems to be working, so keep up with that. Demoral does work for the pain, but it isn't really a workable solution because it makes him super loopy and also unable to sleep. So we are hoping that there is some sort of daily medication that can help with pain generally and then supplement with demoral when necessary. Gess has a lot of limitations when it comes to pain medication (because of the liver disease and clotting issues, plus a bunch of allergies to pain meds), so this might be a challenge.

The doctor also suggested looking into some alternative therapies for pain. Gess has already started to see a naturopath, and he is open to trying some other treatments, so maybe we can find something that works.

As for cause of pain, the doctor says that it really depends on the person--some people with CF have chronic pain, some never have any pain.

So, the plan for that is for Gess to see the pain clinic and take demoral as necessary now. Also, to start the exercise program with pulmonary rehab and do the sleep study, etc. Maybe the exercise will help. Who knows. I think that I have convinced Gess to join a local gym. We are supposed to go and look at it next week I think and get a trial pass, etc.

Gess also had an endoscopy yesterday. The endoscopy went well and there weren't any varacies that needed banding (he has had bleeding in his esophagus before, so 1-2 times a year they go down in to check things out). He had some pain after the procedure (which has happened the last couple of times), so that wasn't good, but at least things looked good there.

He took demoral yesterday so he has been out of it and didn't sleep well. He is at home, trying to do a bit of work and also get some rest. Hopefully things will start to fall together and he will be feeling a lot better.

Can I have C Diff?

So, Gess has c diff and is taking antibiotics for it. He just finished IVs and has about another week on the orals for the c diff. He seems to be feeling better--lung wise, but is still having a lot of pain.

My, on the other hand, I am sick :( I went out on Friday night and when we got home I felt really sick. I vomited and got really red and blotchy. I have basically slept the entire weekend and have been taking benadryl to help with the hives and itching. My stomach has been really upset and I am having some of the symptoms that Gess has...so...is it possible that I have c diff too? I haven't been on abx for awhile...but the symptoms....ughhhhh... I wish that I could get healthy! One sick person per couple is more than enough!

I wish I had good news...

But I don't.  Gess is still feeling crappy.  He is vomiting a lot and in a lot of pain.  He is on IV demoral again.  The only good thing about this is that he cleans and organizes when he is on demoral.  This morning I woke up to find him cleaning out the fridge--and it looks great!  Yesterday when I came home he was mopping the floor!  I love the cleaning, but I hate that he is feeling so horrible and that the drugs are having such an effect.  There has to be another way.  No one seems to know what though.

c diff and the big d

Yep, you read right...Gess has c diff.  We found out right after we crossed the border from a last minute trip to Canada.  He has been feeling crumby (like stomach flu crumby) in addition to his CF-crumby so at clinic 2 weeks ago he talked to the doc and they ordered a c diff test.  It took awhile for Gess to bring the sample in for the test, but sure enough he has it.   So, he is finishing up his IV antibiotic course and starting the orals for the c diff.  Really? It seems like one thing after another.  I hope that with getting rid of the c diff he will feel a lot better.

As for the big D...that's me...and it is depression.  It is back and has been for awhile.  The good news is that I am realizing it, but bad news is that it really sucks. I am struggling to stay motivated for anything and that is hard.  So, I am slogging away, trying to keep my chin up and hoping that I make it :)  Ahhhh...the joys of life.

Clinic Visit

We had a clinic visit on Monday and a lot happened. First, we brought our friend Ta with us. That was a huge step. Gess is always very protective of his health. Since we have been married (10 years), I can count the number of times on one hand that someone besides me has visited Gess in the hospital. In fact, neither his mother or only sister have been there in that entire time. We have never had friends involved. So, the fact that he is letting friends in is huge. A couple of months ago, R--who is Ta's husband--took Gess to the ER for me.

We asked Ta to come to clinic so that she could see the process, meet the docs, and just feel more comfortable with the situation so that I have "back-up" if necessary.

We, of course, went in with a huge list of things to talk about. Gess had started coughing up blood the weekend before so no PFTs for him. We did meet with the social worker and talk about some of the continuing issues we have had with the clinic. The scary thing is that she confirms everything that we are experiencing and says that she has heard it from patients before. The question to me is why then is nothing being done? I can't believe the issues at this clinic! Anyway...

We insisted that we see a different doctor and that has been a good move. He seems to be very knowledgeable and on top of his game, which we appreciate. I also see that there is still a level of trust there--I can tell in how Gess responds.

Because of the bleeding and Gess generally feeling crappy, he started back on IV antibiotics. He is doing tobra and ceftaz. Tobra is hard because it makes him feel crappy and we have had problems with his kidneys. At the same time, it is usually good at knocking out infection. So, I am keeping my fingers crossed.

I also asked the doctor if there was anything that we can do to help reduce the number of infections and cycles of IVs. I think that last year he was on IVs as much as he was off. The doctor said that exercise is key (which I have told Gess a million times). I really don't think that Gess "gets" how important exercise is and what the doctors even mean by exercise. So I asked the doctor to define "exercise" for Gess. And from that discussion came the suggestion for pulmonary rehab. I am all for this and in fact brought it up several times. Gess agreed to do it, but I am afraid that he will back out when he finds out the time commitment, but I am hoping that he will. I really think that he needs it.

The other thing that we talked about was his sleep. His sleep is so erratic and he makes funky noises and moves and wakes up, etc. I can't believe that he is getting good sleep in that. So, he did wear a pulseox meter for one night and based on that the doctor suggested that he do a sleep study. I, again, have been telling him to do that for a long time, so I am happy that he agreed.

He also has been vomiting a lot, so I brought up the possibility of doing a gastric emptying study--which he agreed to do as well!

So...hopefully these things will help and we will be on our way to a better year. Gess sees the pain specialist and also has some liver appointments scheduled. It is exhausting just thinking about it! Oh...and he decided to see a naturopathic doctor. I am excited about that too :)

Sad

I can't bring myself to go into the CF Chat room because it she won't be there. I only "spoke" with her there--or through comments on blogs--but I would consider her a friend in an instance. I still can't believe that she is gone. I keep thinking about the pink afghan she had just finished and the neat tools that she had found on the web and posted to her blog. I miss her.

The other thing about losing someone from the CF community is that it reminds me of what is to come. I related to Jenn because she is one of the few that have the liver/spleen issues that my husband has. The liver involvement adds a huge other set of issues, so it was so nice to have someone to compare notes with. I hate CF!

So much to say...

but really no words. I feel like I have a lot to say, my mind is racing and there is stuff to tell, but at the same time, the words aren't coming. I am stuck and I am sad. I am lonely and I am tired. I am frazzled and I am stressed. blah.

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.  

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!