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!