Thursday, March 26, 2009


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. 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.  

Sunday, March 15, 2009

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! 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. :)

Friday, March 13, 2009

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) :)

Wednesday, March 11, 2009


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**

Monday, March 9, 2009

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.

Sunday, March 8, 2009


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. 

Thursday, March 5, 2009

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 :)

Tuesday, March 3, 2009

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.