Therapy, Pooping, and a Big Decision

I've been home for about a week and a half now and for the most part things have gone well.  Jake has been doing my CPT every night, which has helped a lot.  I'm not good at doing my CPT at home because it usually includes using "The Vest" which is pretty uncomfortable.  The Vest inflates and then shakes the stuff loose in the lungs.  It's just overall uncomfortable when I'm doing it and then I itch like crazy when I'm done.  I think that just has to do with the friction it causes, but still.  I finally asked Jake if he would be willing to do manual CPT and he reminded me that several years ago he pushed pretty hard to do it for me and I, uhm, well, not so politely said no.  I can be really stubborn when I want to be.  Needless to say, he was just short of thrilled when I asked him to do it for me.  

I think manual does a much better job than the vest.  The vest was designed to give CFers more independence and there are also a couple of other things I can use (percussors, Flutter, Acapella) but I don't really like any of them.  I much prefer manual CPT.  CPT involves him pounding on my back, sides, and chest while in different positions for 3-5 minutes at a time.  This is also called "postural drainage".  Depending on whether we're doing "uppers" or "lowers" I sit or lay in different positions in order to get the mucus to drain in the right direction.  It may sound painful, but really, when I get it done in the hospital I can end up falling asleep.  Right now we're doing 3 minutes a side and will work up to the full 5 minutes.  There is quite a bit of technique involved and the muscles really have to be built up.  Jake is doing an awesome job.  He has good technique so he gets a good "popping" sound (a sign of good technique).  I'm glad I finally have a better attitude about the things I need to do...it makes me feel better all around.

Today was a little tougher.  (This is one of those delicate subjects that I hope I won't gross anybody out with...I'll be careful of what I actually write, but you'll get the idea.  If I still gross you out, I apologize! :-D)  Back in January I had an intestinal blockage that made me spend an extra 3 days in the hospital.  I was in so much pain and was so bloated you would have sworn I was pregnant and in labor.  For 3 days I drank some pretty nasty-tasting liquids (to get things moving), MiraLax out the whazoo, I wasn't allowed to eat anything and had enemas 3 times a day.  If things hadn't started moving, surgery was the next step.  I apparently have a shrinking of the intestine right before the colon (they found this in a CT scan) so that can cause stuff to get backed up.  I tell ya, I have never been so happy to poot and poop in my life!  

Anyway, I have recurrences of this every once in awhile, but since I know the signs I can act pretty fast.  Today, though, it snuck up on me.  After breakfast I was so full that I knew I already had a problem.  I drank a glass of milk with MiraLax and then went back to sleep for a couple of hours.  My stomach wasn't nearly as distended when I woke up and I felt better so I ate some Jell-O.  I guess I wasn't better, because even with that little of food in me I was incredibly full again.  So, I've been pretty uncomfortable all day.  I haven't eaten anything since the Jell-O and am a little nervous to do so.  I guess when I'm done with this I'll drink another glass of MiraLax and then try to eat a little something, because I am SOOO hungry.  Hopefully, things will get moving again!

Jake and I made a fairly big decision this past week.  We've decided that after the first of the year, Jake is going to cut his hours at work down to 15 hours a week.  We want to spend a lot more time together, not to mention Jake will then be able to help me out a lot more at home.  We don't want to waste the time we have together.  If the next few years really are all we have left, then we want to make sure we're making the most of every moment.  Jake will still be going to school, but we will have a lot more time together than we do now...which is very little.  Since making this decision, Jake has had so much peace about it.  He really wrestled with it for awhile but he decided that this was the right decision.  We always have fear about what other people will think about our decisions (it's a sickness, I tell ya) but after deciding this was the right thing for us in our situation, we've had nothing but positive feedback.  Our dearest and closest friends, Kati and Eric, even told us that they've been praying that we would do this!  Mom and dad have been awesome.  They know that this means we're staying put for the foreseeable future, but they've made it clear that they want this for us too and are happy to have us stay.  We are so incredibly blessed by parents and friends who love us both so much, are willing to help us in any way they can, and continually support us.

I have never lost hope in healing or a cure or significant medical breakthrough, but Jake and I really had to look at what the possibilities are and what my doctors and history tells us will happen.  We are really looking forward to our time together and the memories we can make that, no matter what, will never be taken away.

Thinking and Praying

Jake and I have been talking about the transplant.  We've been praying about it.  I know others are praying for us.  I keep having the same thoughts and feelings about it.  The trouble is, my answer doesn't make sense.  More than anything, I want to do God's will and not my own.  I want to take the right path, but sometimes God's path doesn't follow what we see as logic.  Not to mention if I go through with what I've been feeling I need to do, it kind of scares me.  Not that it's bad, but just uncomfortable.

Since confusion does not come from God, I know that I've been getting in the way.  Tonight, I went to the first chapter of Joshua and read this:

"Be strong and very courageous.  Be careful to obey all the law my servant Moses gave you; do not turn from it to the right or to the left, that you may be successful wherever you go.  Do not let this Book of the Law depart from your mouth; meditate on it day and night, so that you may be careful to do everything written in it.  Then you will be prosperous and successful.  Have I not commanded you?  Be strong and courageous.  Do not be terrified; do not be discouraged, for the Lord your God will be with you wherever you go."

Though I won't be sharing what has been going through my head right now, I was really encouraged by these verses.  I'm going to continue to pray and I hope that whoever reads this will pray with me too.

Discharge Day!

I'm just finishing up my last antibiotic right now.  Jake is on his way up and should be here in about an hour, so as soon as this med is done I will de-access my port and pack up all my stuff.  I don't think I've written about my port, so maybe I should explain that.  It's a small Rolo (the candy) looking thing that is surgically placed right under the skin.  Mine is in my chest (although there are numerous other places to place them).  There is a tube connected to it that runs up my neck and then down into my heart...well not quite my heart.  Each time I come in the hospital they insert a special needle (a "huber" needle) into it and I get my antibiotics through that.  While I'm here I get the needle and dressing changed once a week, and at home I get it flushed every month.  It's really nice because of the aforementioned limited number of viable veins.  Plus, blood can also be drawn from it.  My Tob levels can't be drawn from it, though, because that's where the antibiotic goes in, so the results would not be accurate.  They have an average lifespan of 5 years before they need to be replaced, but I and a few other CFers have pretty much crushed that statistic.  I got mine in April of 1997 and it's still going strong.  Usually, they need to be replaced because they stop flushing caused by clotting or because they get infected.  I have it flushed every month to help prevent the clotting.  I use heparin to flush it while in the hospital (while it's not being used for meds) and a more concentrated dose of heparin each month while I'm at home.  So, that's pretty much that.

My med is done now, so I'm gonna go take out my needle and get packed!  My next blog will be from home! Woohoo!!!

Breakin' Out

I get to go home tomorrow!  I'm pretty excited about that :)  Saturday will be 2 weeks so Dr. Hornick is letting me out tomorrow.  Studies have shown that hospitalizations lose their effectiveness after 2 weeks and can actually do more harm than good.  Being on antibiotics long term, without a break, can lead to decreased sensitivity.  I have resistance to most drugs, and a lot of the ones I'm not resistant to I'm allergic to, so I certainly don't need any help with that.

I got blood drawn again today, and again, it only took 1 stick.  I'm completely shocked by that.  The entire time I've been here I've only had to be stuck the number of times I've needed blood drawn.  That's pretty crazy.  A very good crazy though.  A kinda of crazy I would like to be repeated over and over and over and...you get the idea :)

I've had a whole different attitude toward taking care of myself for the last couple of months, and it's only improved since I've been here.  Suddenly taking care of the diabetes isn't such a chore, and I actually don't mind (I haven't made it to "like" yet) exercising.  It's been somewhat enjoyable since I've been here.  I've made progress and I feel better physically and emotionally.  I'm trying to figure out what to do for exercise when I get home.  We have a Wii now, so that will definitely help.  I'm looking at a couple of options, but I'm not sure what we'll be able to do.  Whatever happens though, I really think God is changing my mind and my attitude.  I've prayed for that for years and now it's happening.  Very cool.

I got a really happy surprise today.  I found out that the new PT aid, Kelly, is a Christian too!  I'd suspected it since I met her about a week ago, and apparently she had suspected me too :)  Today she asked me and after I told her I  was, we had a great conversation!  It is really nice to be able to talk to her while she's doing my CPT.  She is a very cheerful person and always has a smile on her face.

Today also seemed to be Pick-on-Becky-Day.  It was all in good fun, but it seemed that everyone who came in had something to tease me about.  I've thought for a long time that I must have a sign on my forehead I can't see that says "You can pick on me and I'll take it well".  I actually like it a lot.  The one I remember most is when we were coming back from Las Vegas.  We were on a flight that served us these little boxed lunches that included Jelly Belly's...one of my all time favorite treats.  I got really excited about it and the steward said "Oh ma'am, I'll have to take those".  I got a shocked, sad look on my face and then he laughed and said "I'm just kidding!".  He (and Jake) got a good laugh out of that.  I love that people, even strangers, know they can joke with me like that.

If you know me, you know that I LOVE games, no matter what the game is.  Board games, card games, video games...I love them all.  So, the hospital has a Bingo night that I've always loved to go to.  I guess they realized that people had a hard time getting to the room where they had it so they started TV Bingo.  They have a closed-circuit TV station here at the hospital that they now use for that every two weeks!  It's pretty fun.  You turn the TV to channel 5 at 6:00pm and play.  Earlier in the day they come around and ask everyone if they want to play and give them a Bingo card.  When you get Bingo you call BINGO (2-4646) on the phone and they answer it on the show.  We play 4 games and there are 2 winners for every game.  When all the games are over, the volunteers bring around a cart of prizes that each can pick from. (They're good prizes too!)  Well, last night I was the second winner of the last game!  I chose a green shawl that I'm quite sure my "Aunt" Vicki is going to try to steal. :-P  It was a really nice diversion for awhile!

Anyways, I'll be home by tomorrow night and be ready to visit with the Stubbs family while Jake's sister, Selena, and her husband, Brian, and their 2 1/2 year old daughter, Norah, are down for the weekend.  I always look forward to seeing them and am especially excited to see Selena, who is at the moment very pregnant.  She is due at the end of December, so this will be the last time we see them before the baby is born.  I'm getting home just in time to see them and have some really good food.  Pretty good timing, I think :)

Apologies

For all of you who have commented to me on this blog, I am so sorry!  I thought blogspot would notify me somehow if I had comments, but it didn't so I never saw them until tonight!  I so appreciate all of your comments, prayers, and love...I hope you know how much they mean to me.  And from now on, I will check to see if I have comments so I can write back!

Thanks again!!

P.S. After writing this I found where to change settings so that I do get notified when I get comments :)

My "Free" Day

Not much to share today.  Wednesdays are the "free" days.  No tests at all...just exercise.  It went really well again today.  I'm kinda kicking butt and that always pumps me up :)  

I'm feeling better today although I'm quite tired again.  I got woken up at about 3am by someone taking the other bed out of my room.  I have no idea why they needed it or why they needed it at 3am.  Oh well.  Then I got woken up at 7:30am to do nebs to be ready for CPT.  Usually I don't get woken up until 8 or 8:30, so with all that I'm pretty tired.  

I'm not having the pain in my side anymore and getting up to do things isn't as tough.  So it's my theory that a lot of people prayed about that and so now it's gone :-D  I don't know what Dr. Hornick will think.  I haven't seen him yet today.  He may have come when I was gone, I don't know.  I'm not really worried about anything though.  

I did see the endocrinologist (not Dr. Doelle, but someone else I've never met) and he commented on how well I was documenting my blood sugars and insulin.  I about started laughing.  If he only knew.  I also talked to the dietician today about carbs.  She gave me a booklet thing that should help me some more.  I'm actually finding out that a lot more of what the doctors and nurses told me when I first became diabetic stuck than I thought.  I'm a lot better at estimating carbs than I thought I was.  That's building my confidence a bit more :)

I didn't post this yesterday, but I had a visitor!  Very exciting for me!  My friend, Heather Fey, was in Iowa visiting her aunt and uncle, so she stopped by!  Her uncle works at the hospital so he was able to find me for her.  That comes in pretty handy because this place can be pretty confusing if you're not used to it.  We only got to talk for about 10 minutes before they came to get me for the x-ray, but that really brightened up my week.  Heather and her husband, Paul, are in our small group Bible study at church.  They are great friends and are one of the most encouraging couples we've ever met.  We love hanging out with them and I am really looking forward to getting back to our small group when I get home.

'til later...

A Good Day Overall

I've been having some low Sats lately and some pain in my side so Dr. Hornick ordered a chest x-ray today.  He's pretty sure it's just a muscular thing, but he wanted to double check.  Thankfully, x-rays aren't painful, so I'm good with that.  I'm not sure when I'll get the results from that, but again, if I don't hear anything I know it's okay.

The last few days I've had a hard time breathing when I get up to do anything and had really bad headaches from the low oxygen levels.  Hornick said that I may need to start using more oxygen at times when I didn't used to need it.  That's pretty frustrating to me, but I'm always hopeful that things will get better.  He also said that he's always been surprised with how high my Sats have been given how low my PFTs are.  I think that's kinda cool.  

I also did PFTs today.  They were 31%.  The number we look at, called FEV1, is the amount of air that can be blown out in the first second after deep breath.  Mine is something like .84 liters, which is 31% of what is predicted for my height, weight, etc.  That's not too bad considering how bad I was when I came in, but they're not even close to where I want them.  But really, I want to be back at 85% so...

I kicked some major butt at exercise today.  My Sats stayed high the whole time (on 2 liters of oxygen, of course) and my work load was higher than it's been in awhile.  Amanda gave me a challenge and I couldn't resist.  Turns out I did pretty well!

So, something that's running through my mind...

I'm rethinking the transplant.  Two years ago I made the decision to not get one, but for about the last year I've been continually questioning that decision.  I think it was the right decision at the time for multiple reasons, but now I think I need to look at it all again.  I'm sure I'll be talking about this more in future blogs, but for now I just want to ask that you pray for me and for Jake while I make this decision.  Doing this would mean major life changes, the least of which would be moving for probably 6 months or more.

Thank you so much for allowing me to talk about all this.  I really think this has been good for me and allowed me to open up about a lot of things I probably wouldn't talk about in person unless specifically asked.  I'm very open about my disease but I find it very hard to open up about how it affects me emotionally and so this gives me a good outlet for that.  I also very much appreciate your prayers.  It is only because of Jesus that I am here.  He's the only thing that gives me hope and a purpose for my life in the midst of so much disease and pain.  I am continually grateful that there are people who lift me up to Him in prayer and though I will never understand it, God chooses to move when His people pray, so...thank you for all you do for me.

Randomness

Jake and mom came up for the weekend.  Dad is on Colorado on his annual Elk Chasing, er, Hunting trip so he obviously wasn't here.  (He called me today and said he actually got a shot off this year, so he is now officially a hunter.)  We didn't do a whole lot.  My med schedule is such that it doesn't allow for a lot of time out.  We went out to eat on Saturday and Sunday and saw a movie on Saturday night.  "Changeling" was a good movie.  It was a tough movie to watch, but a good one.  My favorite part of the week while I'm here is the weekends.  I get visitors, get out of the hospital, and get away from hospital food.  It's not all bad food, but it does get boring after awhile.  We did a little shopping on Sunday too, but before I knew it it was time to be back for my next med.  I'm pretty tired now...too much excitement :)

I got my Tob trough today and haven't heard anything about it, so I'm assuming it was okay.  Tomorrow I'll finally do a PFT (Pulmonary Function Test).  We always have them on Tuesdays and Fridays but Dr. Hornick lets me decide if I want to do them or not.  I was feeling pretty crappy last week so I didn't do them at all.  I'm anxious to see what they look like, though, so I'll do them tomorrow.

So far I haven't had any side effects from the new med.  I'm supposed to watch for dizziness, especially when I stand up, but I haven't noticed it at all, so that's good.  Over the weekend I finally started feeling better.  It took longer this time to actually start feeling the progress.  My hope is that it will continue.  I'm still coughing but not like last week.  I got up a lot of junk today and it was easier to get up, so I think that's good.  Exercise was tough today, but I think this was just a bad day for me.

I guess that's it for now.  Sorry it's all kind of random...I really need a nap. :)