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!