Monday, December 31, 2012

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.

Sunday, December 2, 2012

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.

Wednesday, November 7, 2012

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.

Saturday, November 3, 2012

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.

Thursday, October 11, 2012

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.

Sunday, October 7, 2012

Bacon Wrapped Baked Eggs

So my guy has found himself a new job. Upside it's 40 hours a week with benefits. Downside, it's weekend Noc shifts. So I thought I'd treat him to a nice breakfast on his first weekend.

I hate eggs. I normally will smother them in cheese before I eat them. I do like baked eggs. I usually smother them in cheese so it's all nice and melted by the time they're done baking.

One day I had a crazy idea of wrapping the eggs in bacon. Actually, it's my boyfriend's fault. He calls bacon the chocolate of the meat world. Everything just tastes better with bacon, so why not eggs?


Bacon (two strips per ramekin)
Eggs (two per ramekin)
Grated Cheese (any kind you like)
Pepper to taste
Favorite spices

1. Preheat oven to 325 Degrees. While oven heats up, prepare your ramekins.

2. To keep the eggs from sticking, rub some butter on the bottom of each ramekin.

3. Wrap the two slices of bacon on the inside of each ramekin.

4. Crack two eggs open and drop into the center of the ramekin. The bacon should be forming a ring around the eggs.

5. Top with pepper and favorite seasoning (I used chipotle). No need for salt, there's more than enough in the bacon.

6. Top with about an ounce of your favorite shredded cheese.

7. Bake in a 325 degree oven for 24-30 minutes. I live at a higher elevation so for lower ones you might only need to bake for 15-20 minutes.

8. Let cool for about five minutes and then dig into all its bacony goodness.

For us who are watching nutrition facts, here's the lowdown on one ramekin.

260 Calories, 19.2g fat, 592mg sodium, 1.6g carbs, 20.7g protein

This is by no means an "eat only one" type of breakfast.

Saturday, September 8, 2012

Lots of Updates

I've noticed it's been a while since my last post. Things got pretty busy once I was able to return home from the hospital.  The theory about what caused that stay is dehydration. It could be true, I started to recover after massive amounts of IV fluids.

I got home in time to celebrated my 31st birthday.  My boyfriend made a day of it.  He made home made mac'n cheese (I had been craving it the whole time I was in the hospital, and he couldn't find any).  He also made my birthday cake (very chocolatey).  We spent some time at a used book store.  Nothing says, "I love you," like a few hours in a book store.  Later that night, we went star gazing.  That part was comical.  Since I was still on IVs and my next med was due when we would be out.  So my boyfriend brought a lamp out to hang my meds on.  So we were out in a field with a lamp.

I have to say that it was a great birthday.

About a week after my birthday, my boyfriend and I went to the midnight showing of Dark Knight Rises.  Now I'm the type who will wait a while after a movie comes out before I'll even see it in the theatre.  I don't like crowds.  My boyfriend is the opposite.  He loves attending the midnight showings.  He'll plan months ahead of time just to be there.  You would think I'd be miserable going to these showings, but I have found ways to be occupied.  People like to dress up for these things.  For someone who likes to sew, the work put into the costumes is pretty good.  I can appreciate the creativity involved.  Someone even went as far as to make their own Bat Mobile for the showing. It was pretty cool.  And the movie itself was worth the lack of sleep.  So I have no complaints about attending these midnight showings with my boyfriend.

August hit with me getting ready for my Bible Study's annual camping trip.  Since there were no outlets at our site, my boyfriend had to learn how to do the CPT.  I think he enjoyed beating me a little too much.  I guess it's every guy's dream to have an excuse to beat his girlfriend.  We had a lot of fun together.  It was our first trip as a couple and it was great seeing each other each day.  The trip itself was pretty busy.  From the time we woke up till the time we went to bed the day was nonstop.  We had to purposely skip some activities just to get my treatments done.

Despite being so busy, I don't think neither my boyfriend or I wanted the trip to end.

The rest of August was spent preparing for movie night and planning for me to spend a week staying in the same town as my boyfriend. By middle August I did have to pack up and stay with a friend for a week.  The California wildfires had gotten pretty bad.  It was too smokey at my place for me to safely stay.  I definitely didn't want another hospital stay so soon.  It was good timing to leave.  My side had really started to hurt whenever I coughed or moved.  After a couple of weeks of anti-inflammatories and some heat therapy, my side is doing a lot better.

I have to say the week in town was great.  We were able to see each other during the daytime instead of waiting till evening.  We even were able to do coupley stuff, like meeting up for lunch or hanging out at the park.  That week went by way too fast.

Now, I'm officially back at home.  Decided to mess my back up moving furniture.  Sometimes I forget that I have limits.  Or I should say that I forget that there are things that I used to be able to do that I can't do anymore.

At this moment, I'm resting my back while blogging and sitting next to my boyfriend while he plays Zelda.  Perfect way to relax on a Saturday.

Monday, July 9, 2012

Another Day in Lock Up

Still in the hospital.  Was supposed to go home today but my white cells weren't cooperating.  Apparently, they aren't going down to the level my doctor wants them to.

The good news is that I'm not on oxygen anymore.  I can't go running, but at least I can brush my teeth without getting short of breath.  And my nose is happy about this change in events.  It was really starting to hurt. Now I'm just irrigating a bunch of blood out.

For the most part today has been pretty uneventful.  My boyfriend and I are having our last date night before he returns home.  I have to say, he's definitely set some new standards for boyfriends.

Saturday, July 7, 2012

Date Night

Well, I have some good news.  I should be able to go home on Monday.  I could have gone home today, but one of the meds won't be available till Monday.  So I have to finish out the weekend here.  I am looking forward to going home.  Sleeping through the night will be so nice.  Here getting two hours of uninterrupted quiet time is a miracle.

I do have to say that this has been one of my better stays.  I am going to have to give my boyfriend credit for that.  Last night he decided that we would still have our date night even though I am in the hospital.  So he dressed up and made me a peanut butter shake.  Then we did dinner and a movie.  It was really sweet.  instead of letting the hospital ruin our plans, he found a way to make our plans go through.

I can honestly say that this stay has been very amusing.

Thursday, July 5, 2012

Lock Up Update

Thought I'd try updating everyone on what's been going on.  I was transferred to UC Davis on Sunday afternoon.  I figured the earliest I would have been transferred was on Monday, but when two hospitals work together instead of arguing, things get done pretty quickly.

So I had my first ambulance ride that I was conscience for.  My boyfriend rode with me.  He rode up front while I was in the back.  I wish I could say the ride was exciting, but it really wasn't. Between Chico and Sacramento is mostly farmland so I dozed the bulk of the way.

Since getting to Davis, I've been pumped full of fluids.  My bladder is not enjoying this.  They've taken plenty of blood. Done X-Rays.  Still no real conclusion as to what happened, just a theory.

My boyfriend has been staying with me.  He's been really helpful through this.  Since I wasn't able to move around, he basically carried me where I wanted to go.  He's good at distracting me during lab draws.  One time, a nurse came in for blood and my boyfriend started talking about food with me.  We were describing different dishes, finally the nurse said, "stop, your making me so hungry I can't concentrate." I got a good laugh from it, and it was one of my easiest lab draws.

I think him being here is probably the only silver lining to being in the hospital.  We usually don't get much time together.  And right now it's in abundance.  I don't think the sleeper chair he's been using is all that comfy, but he isn't complaining.  I do think the lack of good sleep is probably draining on him.

The hospital food is still a mystery to me.  Yesterday, they sent something that they called Chile Verde, but what it looked like was a dog vomited up a bunch of canned food.  Looked pretty nasty.  Now I love Chile Verde and this stuff definitely wasn't Chile Verde.  This time around, I've been craving chicken alfredo.  Can't wait to get home and have some.

As for when I get to go home, there's no say on that.  I think the doctors are waiting for me to be able to do normal things without oxygen before they will consider letting me go.  So that's what I am working on.  It's a challenge since everytime I unhook the oxygen I feel like a fish gasping for air.  My doctor did order a bike be brought in so I get to start on that.

Not much else here.  Mostly trying to catch up on lost sleep.  Sleep in a hospital, what a novel idea.

Sunday, July 1, 2012

The ER and Lock UP

So I did plan to do some blogging about the amazing busy time I've been having, but instead I found myself unable to breathe.  I was having such a hard time that when I called UC Davis the Pulmonologist didn't think I could make it there, so I went to a local Emergency room instead.  So I am in Enloe.  The people so far have been nice which makes the nerve wracking part of being a new place a bit less so.  It looks like I was dehydrated again.  As soon as they pumped some fluids in me, I started having an easier time breathing (with the O2 on).  I still can do a lot of moving around but there is some improvement.  The doctor here spoke with my CF doctor and they both agreed that I would be better treated at UC Davis. So they're trying to get me stablized enough to transfer.  Not sure when that will be.

The silver lining to all this is that Enloe is located close so that my mom can get some rest at the house and my boyfriend can relieve her.  He met us up at the ER and stayed the night here with me.  My mom had worked yesterday and needed to get some rest and care for my niece.

Another good thing about being here is that we have a couple of friends from our Bible study who work here.  They've stop by to say hi.  One of them came just in time. The hospital was getting ready to move me from the ER to a room.  They sent a guy from the lift team to bring me up.  I still had a bunch of EKG stuff connected to me and he was going to remove.  I sitting there thinking, "I don't even let my boyfriend see this part of me and here a complete stranger about to lift my shirt."  Luckily my friend told him no, shooed him to the other side of the room, shut the privacy curtain, and removed all the stuff.  She did this during her lunch break.  I was completely relieved.

So I've survived my first night here.  My boyfriend is trying to catch up on some sleep.  He's been up with all my coughing attacks, and my short of breath moments.

I think being a loved one of a CFer can more exhausting than being a CFer at times.

Wednesday, June 20, 2012

Busy, Busy, Busy

Things have been busy since my last post.  Busy is better than boring, but sometimes I need time to take a breather.

Friday, I got my hair cut.  It's shorter than it has been in quite awhile.  I do like it though.  Less shampoo, more curls, and much lighter for this summer heat.  I can make a pony tail and not have a bunch of hair touching my neck. A plus side is that my boyfriend likes it (or at least he says he likes it).

Friday was one of those hot days.  It hit at least 103 outside.  And that was the day I had to go to town.  Luckily, I packed Gatorade on top of ice water. 

Friday was also my Bible Study's Movie Night and potluck.  We had plenty of food and lots of laughs.  Most of which were at my boyfriend's expense.  The movie we selected was Signs.  It has plenty of points for discussion.  Overall, I'd have to say that the night was a success.

Saturday was spent with my boyfriend.  It was another hot day so we had to stay in.  We did dinner and watched Secret of Nimh.  Sometimes it's nice to relax and watch those childhood classics.  I don't think we ever truly outgrow them.

Sunday was Father's Day.  My mother and I had brunch with my grandfather.  We brought Mick with us.  It's funny seeing my grandfather with that little dog.  They really adore each other.  So Mick got spoiled as well as Grandpa.  My mom and I headed home after brunch and I took a long nap.  I think having days of stuff back to back really takes it out of me.  I woke up in time to have a weekly call with my dad.

Monday was an appointment with my CF clinic.  Apparently the flu really did take it out of me.  I lost five pounds and my lung function is down again.  So now I'm back to square one trying to get the weight back on.  I'm back to square one on exercising.  And because it's summer I have to work extra hard to stay hydrated.  Maintenance is a full time job. 

My boyfriend has offered to help me with the weight gain and exercise.  I've decided to see what ideas he can come up with.  He might think of a few things I never thought of.   I do foresee some extra peanut butter shakes in my future :o)  Right now, I am trying to eat every three hours.  Sometimes it's just a small snack, but it's something.  That's every three hours while I'm awake.  I'm not setting alarms at night to eat.  And because of the heat, I've been eating plenty of ice cream.  The funny thing about trying to gain weight is that I'm craving apples.  So I'm thinking of picking some up and eating them with peanut butter.  I know it's not a ton of calories, but if I don't give in to my food cravings I can get moody.

Tuesday was Bible Study.  It was fun, lots of food.  My boyfriend had the night off so we had some one on one time afterwards.  For us those times are a rarity.  So we take them when we can.

Today, I relaxed.  My body needed the rest.  Besides, it was too hot outside to do anything.  I should get a kiddie pool set up so I can just relax outside in cool water.

It's time to eat again. 

Wednesday, June 13, 2012

Hot Days of Summer Have Began

Talked to my doctor, since I'm back to coughing and being short of breath.  That flu really took it out of me.  I don't want to go back to the hospital this soon so he agreed to have me try some oral antibiotics for a few days.  If that doesn't work than it's back to IVs.  So I am currently on three meds that say to keep out of sunlight.  So it looks like I'll have to hold off on getting some colour back on this skin.

Had to put the AC on before noon today.  I hate hot days.  I don't like the heat.  I can't keep up on hydration, the air is hard to breath, and I become a walking salt lick.  The other bad thing about the heat is that I don't get hungry.  I'm hungry when it's cool, but when it's hot I want nothing to do with food. I just want to cool off.  The not hungry part is hard since I don't have any weight to spare.  Normally, when the weather heats up, I keep a supply of ice-cream on hand.  It's cold, cools me off, and helps with the calories.  Probably not the healthiest meal choice, but it's better than not eating.  Once the suns goes down and things cool off a bit my appetite returns.  This equals a lot of midnight and 3am snacking. 

And then there's hydration.  During the summer I tend to lose more water than I put in.  It's not for lack of trying.  On really hot days I need about 20 glasses of water/Gatorade just to ward off dehydration.  I'm not kidding, my doctors and I actually measured it.  That is a hard goal to reach each day.  No wonder I don't get hungry.  I'm too full of liquids to eat.

I still haven't figured out this whole eating in the summer thing.  Maybe I should get a pool and eat all my meals in nice cool water.  Seriously, though I do wonder how other CFers beat the challenges of a hot day.

It seems that the warm weather is here to stay.  That means packing away all the winter blankets and just sleeping under sheets.  That also means camping weather and trips to the coast.  I'll take any excuse to visit the ocean. 

As for today, I think I'm going to sit under a fan and read a book with a bowl of ice cream.

For updates on my transplant journey click here.

Monday, June 11, 2012

Wicked and Jewelry

Back from my trip to Roseville. Saw Wicked on Friday.  It was my 30th birthday present. A year's wait and was totally worth it. I wish I could tell all about it, but I don't want to ruin the show for anyone who is planning on seeing it.  I will say, my sister got us awesome seats. We had box seats. The view was great. And the costumes were so cool.  The music was great. It was definitely an amazing night.  It had been over 10 years since I had last seen a show.

Before we went to the show, we stop for food.  We ended up going to this Asian place in downtown Sacramento.  It was a short walk from the theatre. The food was good and the prices were reasonable. My sister got my brother-in-law to eat a chili which rendered him unable to taste for a while. I got a rice bowl. It was bigger than my head.

After we ate, my sister hung out at Capital Park for a while.  It was across from the theatre.  We had close to an hour to kill before the show.  The park is a beautiful place to hang out.

Saturday evening my family and I went to a jewelry fundraiser for COTA.  The jewelry was pretty nice.  My sister bought a few pieces.

Sunday was the first time I got to see my boyfriend in two weeks.  I had gone to Stanford and then got sick, so we hadn't had any one on one time.  A lot of phone calls but nothing face to face.  We met up at church and had lunch together.  I'm lucky, my boyfriend likes Mexican food so when I'm craving tacos he's all for going out and getting some.  As long as he gets to have a burrito, he's a happy guy.

Today, I've just been relaxing and snacking.  Too hot for a big meal, but small meals seem fine.  Plus I get to eat lots of ice cream.

Tuesday, June 5, 2012

June Already

So, I didn't get to blog as soon as I returned from Stanford like I had planned.  I wound up sick.  I actually started getting sick on the way home.  First it was non stop hacking.  I thought I was having some weird asthma attack.  No way I could be sick.  I cleaned everything before I touched it.

By the time I got home, I had a fever.  There was no denying it, I had my mother's bug.  And it was horrible.  I was hot, then I was freezing.  I was coughing so much my abs and ribs hurt.  Nothing was coming up.  My throat hurt, my head hurt, my eyes burned.  I felt like a rag doll that's been thrown around.  My legs were killing me.  And I was so exhausted.

I locked myself in my room and mostly just slept.  I didn't have energy for anything else.  I mean eating was exhausting.  If I checked my email I'd be too worn too answer.  This was one crazy bug.

The fever didn't break till either Thursday night or Friday morning.  It's been a slow recovery process.  My cough is still pretty rattly and I only have enough energy for basic things.  This was not a bug to catch.

I'm spending the rest of the week resting up.  I want to be as well as I can get by Friday night.  My sister got me tickets to see Wicked and I have been looking forward to it all year.

I spent my sick time basically cut off from the world (hard to do much when I keep falling asleep).  I did wind up with one of those "I can't believe he did that" moments.

On Monday I was getting my morning treatments out of the way.  My sister and her boyfriend went out for a bit.  I didn't think much of it.  When they returned, my sister's boyfriend said, "You got mail _____" I figured he wasn't speaking too me since _____ is a nickname my boyfriend gave me and no one else knows that.  So my sister comes in and says "_______ you have mail," and she tosses a letter at me.  And there on the envelope in my boyfriend's handwriting is ___________.

There is no way to live this down with my sister.  At the moment she's milking it.  Every time she sees me she calls me ___________.  I am hoping she gets bored of it soon.

Hopefully everyone else's week has fared a lot better than mine.

Monday, May 28, 2012

A Dolop of Daisies

I hope everyone is enjoying this beautiful Memorial Day.  Make sure to thank at least one of our country's service members.

My weekend went fairly well.  I'm dealing with the fact that I'm feeling tons better since my hospital stay that I want to do everything.  So I'm having to remind myself to slow down and take a break.

Friday night was dinner with some friends from my Bible study.  My boyfriend was sweet enough to arrange a ride for me that day since I didn't have access to a car.  After dinner we went and watched the latest Muppet movie.  It was funny in that cheesy sort of way.  Definitely, Muppet style.

Saturday was a relaxation day.  Basically means I stayed home, did some laundry, and worked on some writing.  My mom came home really sick that night.  Some sort of bug.  I feel bad, I want to help her but most bugs send me back to the hospital.  So I've been staying holed up in my room.  Not to worry I have plenty of supplies to get me through this epidemic :o)  Actually, today my mom is sounding better.  She still has a nasty cough.  So I'm guessing another day of rest is in her future.

Sunday was a bit of a treat.  My boyfriend and I joined some friends for a picnic in the park.  The mild weather made it a perfect day.  We even found a tree with moss in shape of a heart.  And I had never been to that particular side of Bidwell.  It was neat seeing different spots for swimming.  And the way the park is set up, there can be tons of people there and you still feel like you're having a private get together.

Mossy heart

 I think one of the highlights of the day was that my boyfriend got me first bouquet of flowers (from a boyfriend).  They're daisies dyed in my favorite shade of blue.  He hid them at the church and presented them after service.  Definitely one of those "Awww" moments.  I really want to take them with me to Stanford this week.

That is it for today.  Next time I blog, I should be back from Stanford with some more interesting quips about medical staff.

Friday, May 25, 2012

The Crazy Month Of May

 My fiftieth post!  Such an occasion calls for cake or maybe blackberry pie.

I know I said I would be updating more often in my last post.  Things have just been hectic. I've been trying to balance my normal responsibilities with having a boyfriend.  It's a slight challenge considering we live a 30 drive from each other.

I went on a hike at the end of April.  I really enjoyed it.  Been a while since I was out hiking. Went through an entire Oxygen tank.  My boyfriend was really sweet and super patient.  Even with the oxygen, I had to take several breaks.  Since my pack held my tank, my boyfriend had to carry enough food and water for the both of us as well as a spare tank.  He didn't complain.  The area we went to was called Table Mountain.  Picked a great day for the hike.  The weather was mild and there was lots of green.  The place looked how I imagine Middle Earth to be.

We made it to one of the waterfalls.  To get there required a climb down into this ravine like place.  Was worth it.  There was lots of shade and places to sit and rest before continuing on.  And the waterfall was beautiful.  

My boyfriend and I left our hiking group early since I was running low on oxygen.  Near where we parked was this large tree so we waited for our friends there.  We got some cute pictures while waiting.  It was a great day.

My boyfriend and I went to the midnight showing of Avengers.  If you still haven't seen the movie, I recommend you stop reading this and go right now.  It was great.  Especially, for someone who enjoys superheroes.

The first weekend in May I went on a Ladies Retreat with the ladies from my Bible study.  We were up at Lake Almanor.  And it was beautiful.  You could see Mount Lassen.  I was pretty amazed at snow still being up in the mountains, since we were already getting swim suit weather at home.  The ladies retreat was fun.  We did some Bible study, worship and got to know each other better.  One of the ladies made this amazing stir fry that I am planning on requesting the recipe from her.  Might help with the weight.

After the retreat was my doctor's appointment.  The good thing was my weight was staying steady, bad news was I couldn't breathe.  So I went back to the hospital.  I was there for a week.  I did try to blog there but my nook wasn't letting me on the site for some reason.  I need to get the hang of that thing.  I got it so I can keep up with my writing without lugging my laptop around.  And that's the part that doesn't want to work.

For the most part my stay was uneventful by way of crazy staff.  The only problem I had was the attending brought a bunch of medical students into my room one morning and then asked if they could all listen to my breathing.  I told her (in front of the students) that I wasn't a circus attraction.  I would have been fine if it was one or two students but a whole bunch of them.  And she didn't check ahead of time to see if I was okay with it.  She just brought the students in and then asked.  I felt like they were trying to intimidate me into allowing everyone to "take a listen."  I don't think I scored any points with her.  After that though, she did only bring in two students at a time to see me.

The hard part about this hospitalization was that everyone was busy with work or school or they were sick so I only had two days when I got visitors.  That part was a little depressing.  The up side was that since my boyfriend couldn't make it to visit he sent a care package.  It was super sweet and contained things that I like.  So if your CFer ever ends up in the hospital during a time you can't visit, send them a care package of things they'd appreciate.  Include some good snacks as well cause the food sucks.

When I got out of the hospital, I was sent home with IVs.  Somehow the attending wound up ordering Zyvox as a suspension instead of a pill.  The suspension is nasty.  It takes willpower to not spit that stuff out.  So I had to endure that tastebud torture.

On Saturday my boyfriend and I celebrated our Monthaversary.  It was sweet, he made dinner and dessert and then we watched Underworld.  Cause nothing is more romantic than vampires and lycans trying to kill each other.  Actually, we both enjoy Sci-Fi and Fantasy.  And Underworld is a movie we both agree on.

This past Tuesday, I had an awww moment. In honour of cystic fibrosis awareness month, my boyfriend had gotten both of us purple cf bracelets.  That in itself was sweet.  On Tuesday when I had gotten to Bible study I saw several other people wearing the purple bracelets.  He had asked a bunch of people to wear the bracelets for the month.  

I think that pretty much catches us up for now.  I have an appointment with the transplant clinic next week and another appointment with my CF doctor in mid June.  And between all that, I want to get some more bike riding in.

I hope everyone has been wearing purple in honour of cystic fibrosis awareness month.  If you haven't, you still have the rest of May to wear it. 

Wednesday, April 18, 2012

April Updates

I know I haven't kept up with blogging as I should. I spent the last six months without internet at home, and let me tell you that was a challenge. I've moved again, but this time I have internet at home. Hopefully that translates into my adding more posts here and on the COTA site.

Not a whole lot going on CF wise. Still doing the weight struggle. It can get exhausting and frustrating when you know where you want to be weight wise and there seems to be a stone wall blocking you from that goal weight.

 A friend of mine fixed my bike, so I am getting back into riding. I knew I was out of shape (hadn't ridden in two years), I just didn't know how badly out of shape. The day after my first ride I was aching everywhere. And I mean everywhere. I wound up sleeping that day away. Had my second ride on Sunday. Much less pain and didn't sleep the day away. The good about riding is that I am starving up to 24 hours afterwards. Hopefully this will help me pack on the pounds. I am glad to be doing something active again. It does take some planning though. The bag that came with my oxygen isn't very useful for active stuff so I had to figure out how I was going to do activities I enjoy without messing my back up. Luckily, I have some friends who contributed to the brain storming. The original idea was to use a camel back (has holes for the tubing), but those things are a bit pricey. Instead we took my hiking pack and fit the tank in there. Works great and the tank stays secure. Because of the amount of oxygen I go through on these rides, my friend carries a spare tank in his pack. Looking forward to the next bike ride.

Not much to report on doctor visits. Have one with my normal CF doctor in May. It's mostly to make sure I'm putting on weight. Really could go for a fat transplant right now.

I guess I should update: My bike riding friend is now my boyfriend. Just made it official tonight. Guess I should go on walks more often.

Monday, March 5, 2012

March Update

A lot has been going on since my last post. I still don't have internet at home, which makes blogging difficult. I had another appointment at Stanford and one at UCD. I spent a few days in the hospital. Plus I've been trying to do more outside my home (been getting stir crazy).

The appointment at Stanford went okay. Still not sick enough to be listed. All this waiting can get aggravating. Personally, I don't want to get worse than I am now. But rules are rules.

My UCD appointment went well. No change in health. Still trying to get the weight on. And some days I feel totally exhausted when I've done nothing. I found that riding the quad helps bring more gunk up so my doctor recommended I do that at least twice a week. So I've been making a point of taking it out. My dog likes it too, since he gets to go running. I did complain to my doctor about this whole waiting thing. It's frustrating. I finished school got my degree and now I can't use it because I can't work and stay healthy. He suggested I find some volunteer stuff to do. I would only have to put a couple of hours a week in and wouldn't wear myself out. Problem is, I live in the middle of nowhere and have no vehicle. So I'm doing the car search, which exceedingly frustrating. So far, only piles of junk are available in my price range. The appointment ended with me doing a bunch of lab work and then heading home. I slept most of the way home.

At the beginning of February I wound up in the hospital. Still not sure if it was allergies or my CF. I had allergy like symptoms but my white blood cell count was through the roof. So I did a round of antibiotics and my mom cleaned the house from top to bottom just in case. So far no more itchy burning eyes and no more runny nose.

The day after I got out of the hospital, my Bible Study group had its Valentine's Dinner. I had finished my dress the day before I went in to the hospital. It was this gorgeous white gown, covered in black lace with a berry coloured ribbon belt, tied in a bow. It was a thrift store find that I made some changes to. It turned out great. And the Valentine's Dinner was a blast. We were all single and friends, so all that crazy pressure to be romantic wasn't there. We were just there to have fun. Next time though I think I'll make a dress that is a little looser around the waist. I couldn't eat as much as I wanted because I ran out of room in my dress.

Things have wound down a little bit. I still have a Movie Night to plan out. My team and I are just having a hard time choosing a meeting time when we can all be present. Which we need to get cracking since Movie Night is on Friday and we don't even have a movie picked.

In the works is me giving a group of ladies a lesson on how to make a hair piece like the ones I make. Hopefully, it all goes through. I think it would be fun and a challenge. I'm used to art lessons with pre-schoolers not adults. So while I'm sure I won't have to worry about anyone trying to eat the glue, as adults we lose some of our creativity. Pre-schoolers don't know rules about coloures and techniques. They just pick what they want to go together and do it. I had a little girl who made a purple snow man and she was proud of it. Adults have a little trouble letting go of the rules. Snowmen are white, the sky is blue, and the grass is green. Any deviation from that is wrong. So trying to show them otherwise can be a challenge. I was making my list of materials needed for the project, and I really had to think. Besides glue, the rest of my materials can be random. Sometimes I use ribbon, sometimes beads or buttons, sometimes shells. I use whatever inspires me at that moment. It's fun, it's quirky, and there are no rules. I hope this turns out well.

Also in the works is my church's annual Night at the Oscars. You get to dress up (in formal wear or costume), have dinner, and have fun with everyone. I plan on going in costume this year. It's mostly complete. I just have to finish the corset and make a hat. The hat has proven challenging. Mostly, because I just want a small black hat that I can decorate myself. What I am finding are already decorated hats. I don't want to spend a bunch of money on something I'm going to take apart and redo my own way. It's frustrating. So it's back to the drawing board.

I hope you're keeping just as busy and staying out of mischief.

Till next time.

For updates on my transplant journey, click here.

Tuesday, January 10, 2012

Another Day, Another Doctor Appointment

Yesterday, I had a follow up at my CF clinic. After a bout with the stomach flu and then a miserable head cold, I am happy to say that my lung function stayed the same and my weight didn't change either. My sinuses were still draining, but at least it was all clear. I told my doctor that Jalapeno Cornbread worked wonders for my cold. He laughed and told me that he didn't think he could prescribe it to the other CFers with colds.

I'm serious though, my grandfather gave me some of that cornbread when my sinuses were so swollen that I had an unbearable headache. The cornbread worked faster than the Advil I was taking. I spent most
 of my cold eating Mexican food, just to keep my sinuses happy.

The rest of my appointment went fairly well. I had my usual complaint about not being able to be as active as I used to. Not much he can do there. And we went over the pain in my back (I tore a muscle a few months ago and the pain has been slow to go away). We talked about my crazy blood sugars (mostly lows) and ideas on how to put on more weight. We talked about how much fun I have riding on my grandfather's quad (and how much gunk it clears out). My doctor recommended that I should ride the quad at least twice a week. I guess if the doctor orders it I should do as he says. Darn :o)  Then he ordered a bunch of labs, I took a Xanex (I have a real phobia of needles) and went down to the lab.

That was the fastest lab draw I've ever had. And the technician had a lot of vials to fill. Of course the Xanex worked a little too fast. I had a hard time focusing on stuff and kept dropping my notebook.

Don't think I was crazy enough to drive myself home after that. My mom drove me to my appointment. And she drove me home. I took a nap on the way home. I went to bed early and slept like a log. So, the Xanex was really helpful with having labs done. I just can't plan anything for the rest of my day. And I don't like the drugged feeling. I feel the same way when I take Benadryl. So it's pretty safe to say that I'm only taking the stuff for labs and that's it. Luckily, my doctor is aware of my problem so he only schedules labs when necessary.

So now I am clear headed, it's a bright sunny day out (not normal California winter weather). I think I'll follow doctor's orders and take the quad out. With a helmet of course.