Cabin Fever

I'm still in the hospital. Good news is: I should be going home tomorrow. While Stanford is a nice hospital, and the staff is amazing, I can't wait to go home.

I want to sleep on my own bed. Play with my dog. Curl up on the couch with SB and watch sci-fi movies. I want to get my food and not wait for a nurse to bring my enzymes and insulin.

This stay wasn't a waste of time though. Every time I start thinking that maybe I should bend and go back to having TV, the hospital reminds me that I'm not missing out. With all the channels that are available, there is rarely something on worth watching, and even less is on that is worth paying to watch.

Actually, the doctors used my time here to finish up the tests needed for listing. Some of the test were awkward. One was for ladies. And I had no warning. A doctor came in told me what she was here for And my brain was going "what? Not now. Are these people nuts?" As most ladies know, appointments like that require some serious mental preparation. So it being sprung up was not appreciated. I got it over with, which means that I don't have to face that torture for another two years.

Another thing they sprung on me was an ENT consultation. An ENT is a nose, ears, and throat doctor. Now in my experience a consult is just talking to the doctor, voicing concerns and possibly scheduling some labs. This guy came in with a camera to shove up my nose. And he actually had the nerve to tell me it wouldn't hurt. He did try numbing my nose but all the stuff did was numb my front teeth. It did nothing for my nose. So shoving a camera up there really sucked. All so he could see in my nose, and then tell me that he wants to do another CT scan in a month when I'm feeling better. I guess they want to do any necessary sinus surgery before transplant.

Of course my nose is my favorite body part. So I am hoping there is no need to mess with something so cute.

Spending New Year's here didn't turn out bad. My sister and her husband came to celebrate. And SB made it in time. So we opened the Martinelli's and rang in the New Year. The funny part was my brother-in-law forgot to bring a bottle opener. So he ended up figuring out how to open a bottle with a piece of paper. Of course he had to give SB a demonstration. Actually, it was pretty cool.

My sister and here husband went back home after New Year's. They had to go back to work. SB was able to stick around till Friday. During treatments, he would go exploring. He found a few shops that would make me drool.

I did get curious at how often people actually come into my hospital room. So on Saturday (slow day by hospital standards) I timed every time someone came in. It came out to over 8 hours. No wonder I feel like I never have privacy. For an introvert, this can be really draining.

Looking forward to tomorrow. SB is making the long drive to take me home. Should probably sleep tonight so I talk his ear off for four hours.

Till Next Time.

Final Post Of 2012

This is the last post of the year. I hope you have been enjoying your holiday.

December filled up quickly. I found a place to move to. Still doing the moving thing. Finally got Internet set up there. Still working on an actual phone line. People can call me, but I can't call out. Not sure how that happened.

SB has been offered a place to stay as well. It sounds like a great deal and I am hoping he can take it.

I went to Stanford for some testing about a week before Christmas. Got pretty doped up. Not my best couple of days. I guess I really tried SB's patience. So high dose steroids mixed with high dose antihistamines produces a very rude and delusional Geeky Girl.

Once the doped up state wore off, I started running fevers. I thought it was just a side effect from the tests. But I didn't seem to improve much. And I was so thirsty. I started to feel better by Christmas.

Christmas seemed to come faster than I expected. SB gave me my gift early. Midnight showing of The Hobbit in IMAX. I can tell you, I was one happy lady. I had a countdown going on my Facebook. SB did a great job picking that gift. I will probably be bragging until the second part hits theaters.

I spent Christmas Day with my family. I loved watching how excited my niece was about the day. And I was able to spend some time with my sisters. We played Pictionary Man. I have to say that is one addictive game.

All in all it was a great day. The downside was that SB had to work so he wasn't present. Wished he was. He would have dominated at Pictionary Man. And the guy would have been in heaven with all the food.

Day after Christmas definitely didn't turn out as planned. SB had wanted to bake sugar cookies. I agreed. I had the bright idea to walk my dog before SB came over. My heart rate went crazy and I couldn't breathe. I still hadn't recovered by the time SB arrived so he took me to the ER.

I tried protesting. I had promised SB sugar cookies. I had also promised to make him his own Christmas dinner. I had the whole thing planned out. So there was no way I could be sick. SB won the argument and took me to the ER. He might have been freaking out inside, but outside he remained calm and got me there safely. He kept reassuring me that this time I'm not as sick as I was in June. I have to say that SB did an amazing job keeping people informed of what was going on and holding my hand for those horrible lab draws.

The following day I was transferred to Stanford. The doctor had said that the infection was in my blood stream and that my marrow was releasing premature white blood cells. He felt I needed to be sent somewhere that could better handle the situation.

That was a tough pill to swallow. With the new year coming in, the last thing I wanted was to be in the hospital. Much less one so far away from friends and family. When the ambulance came, SB gave me a hug and a kiss. I can honestly say that goodbyes are never long enough and this one felt way too short.

The first couple of days were exhausting. I was hooked up to heart monitors. Those kept beeping if I so much as coughed. And if I got up to use the bathroom, alarms went off like crazy. People would rush in to check on me. I felt bad. Them constantly rushing in on a false alarm. I'm surprised they didn't try kicking me out for all the false alarms. The good thing was, the doctor left orders for me to move around but if I went without oxygen I would start having trouble breathing. So I would have to call for someone to escort me. In the end, they hooked up an extension for the oxygen that could reach to the bathroom.

I'm still in Stanford. Missing everyone like crazy. SB calls each day, which makes me miss him more. He's been having to work a lot. I feel pretty bad about being here. SB was on the schedule to work tonight so I had planned on getting dressed up, grabbing some sparkling cider, and heading over to his work in time to ring in the New Year. Me being here means scrapping that plan.

On a good note someone is taking SB's shift tonight. So my fingers are crossed that he makes it here in time.

Happy New Year Everyone.

December Update

It's been awhile since I've posted any updates.  Have an appointment in the middle of the month to do the tests that Stanford wants before making a decision about whether they should list me.  Seems like I'm always playing the waiting game.

In October my cousin got married.  It was a nice wedding.  Very Jesus centered, which is what my cousin and her husband wanted.  I enjoyed seeing family again.  I did miss my boyfriend (going to refer to him as SB from now on).  Due to the limited amount of space SB couldn't attend and I missed him terribly.  I know he would have enjoyed talking about zombies with my brother.  And most of my family on my dad's side are Lord of The Rings fans as well.  Besides, I've yet to get a slow dance with SB.

After my cousin's wedding, I went with my dad to my uncle's house where my dad surprised me with a car.  I was pretty shocked.  My brain was going, "I can see your lips moving, but I can't understand what you're saying." My stepmom got a picture of it.  I kind of look like a deer caught in head lights.  I am so glad to have a car again.  It had been a year and a half since my last one and I was definitely finding myself in need of transportation.

The car has made it easier to spend time with SB and I've been able to make it to appointments without hounding other people for a ride.  I am able to stick to my commitments without worrying about canceling.

After I returned home from my cousin's wedding, I wanted to go to SB's to show him the car, but SB turned out to be pretty sick.  This is one of the hard parts about CF.  I can't just go see a loved one when they are sick.  I have to stay away and seem cold hearted.  I really wanted to go see SB and give him some chicken soup.  I wound up making him a care package.  I put in some teas that help me when I'm feeling crummy.  I made him mini apple cakes.  I wrote him a get well letter.  And then I included a mask so we could hang out.  And he wore the mask.  The cool part is, I didn't get sick.  Between tons of Purel and SB wearing a mask, I made it without even a sniffle.  SB felt better by the end of the week.

October was also the month SB and I celebrated six months of dating.  We dressed up and went for Italian.  It felt pretty good hitting the six month mark and still enjoying the relationship.

October ended with my trip to Stanford.  I want to thank everyone for their prayers involving the doctors' decision.  While they didn't decide to list me just yet, it does give me time to plan.

November seemed to fly by.  I spent Thanksgiving with SB and his family.  It was fun watching him play with the little kids.

December is filling up fast.  We are planning the last movie night of the year for our Bible Study.  SB is moving (the house he lives in is for sale). I've been apartment searching (house I live in is for sale).  I have another Stanford trip for some tests.  And we have all the Christmas festivities included.  It is looking to be a busy month.  A fun but busy month.

Stanford Decision Part 1

I finally heard from Stanford today.  They want to wait until they get my tests updated before making a decision.  So that could be anywhere from two weeks to two months. So I might not have an answer till after the Holidays.  It gives time for more fundraising. Thank you to everyone who has been praying.  It means a lot to me.

Prayer Request

Dear Family and Friends,

On Monday, November 5, specialists in Stanford will be meeting to discuss putting me on the waiting list for a double lung transplant. I am asking everyone for their prayers in this area. Pray that God's will be done and that I can accept whatever choice is made on this matter. 

Thank You.

The C Word

When it comes to medicine there's a lot of words that can make us cringe, cardiac catheterizing, colonoscopy, Picc line insertion... The list goes on.  I get to write about one of the big C words.  Yes, I'm going to mention constipation.  It's okay, you don't need to hide under your bed. No one is going to burst in saying, "I'm here to give you a pink lady." I found out the hard way that it has nothing to do with apples.

After my incident in the ER last year due to being full of crap (quite literally, there's an X-ray to prove it), I've been working really hard to avoid another encounter with the "pink lady." I have learned that exercise and lots of fluids help things run smoothly. Having a fiber rich diet. And Raspberries and Blackberries do a great job of cleaning you out when you're stopped up.  Plus they taste good on ice cream (adds calories).

Now with feeling sick and having no energy, I started getting that stopped up feeling.  It can get pretty bad.  For me, I get stomach cramps after one day of not being routine. So I can't let that feeling build up for more than a couple of days. And with me being back on IVs, I really want the rest of me working properly.

There are plenty of over-the-counter remedies. The best way to choose is have your doctor recommend one or two that you can use (don't mix them unless he okays it). In my case my doctor is fine with all the foods that can help clean you out.  He isn't a fan of most of the laxatives out there.  There is one he'll recommend so that's the one I use. It's tasteless, you mix it in liquid and drink it.  I just have to remember to really hydrate because that stuff pulls a lot of water into the intestines.  Don't want other organs suffering from lack of water.

Of course the next day I get pretty cleaned out.  It's not a fun process, but it is much better than going to the hospital for a clean out. As for me, I've gotten my clean out at home.  I'll probably be eating Craisin Bran for the rest of my IV treatment, just to be safe.

On IVs Again

So, I have found myself back on IVs again. This time it's at home. Not really sure what's causing it. Had a slight fever on Wednesday but that cleared up by the following day. Then this weekend I started having trouble breathing.

Not what I had planned for this month. My cousin is getting married, my dad is visiting, my boyfriend and I will be celebrating six months together, and I have a trip to Stanford. All this planned for October. There's no time for being sick. So here I am at home on IVs Nd oxygen, trying to figure out had to keep all of my commitments.

I guess this is one of the challenges of CF. Trying to balance treatment and medication schedules with having a life. It's not easy. There are days when I think I have it all worked out and then there are days where I have no idea how to get that balance.

Luckily, today there is nothing planned. I am hoping to rest up enough to join the ladies from my Bible Study for sushi night. That is my hope. If I can't make it, it won't be because I didn't do what I could.

I think the problem with being sick this time is that I don't want to sit still and rest. I want to be doing things. The weather is cooling down and I want to be riding my bike, getting a last hike or two in. I want to start baking. I want to attend Fall events. I feel physically tired, but my brain is yelling, "Let's Go!"

Maybe I can convince my mom to help me find my crochet supplies in the garage. That might keep my brain appeased for a little while.