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.

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.

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. 

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.

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.

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.

End of 2011

I hope everyone had a Merry Christmas. I did. Christmas Day was low key and fun. I spent the whole day eating. Hopefully some of those calories went to my hips. I have to say I lucked out. I got the first two seasons of Big Bang Theory and a gift card for the third season. So I'm set to have a a Big Bang Theory marathon. I even have a new popcorn maker for endless popcorn.

The Christmas season always tends to get busy. In a good way though. I like all the cooking and baking. I enjoy sampling all the different meats and cheeses. And pasta, Yummmmm. Of course tomorrow is the last party of the year. I plan on spending it with friends. Hoping that there will be more than carbs available for snacking.

I figured I'd try to get one last post in before the New Year. Of course just because the holiday season tones down doesn't mean I get a break. January is the birthday month in my family. We have at least one birthday each week in January. I am so glad I have a birthday in July it's not so close to the holiday season that people are done with parties and it's in the summer when you can have water fights and lots of swimming.

With the New Year coming up, I guess I should be making my resolution list. Haven't figured out my New Year's resolutions yet. I guess the main one would be to gain some weight. Maybe I should try finding a workout routine that I can do (and enjoy)  despite having to use the oxygen. I hear that there's a water aerobics class for seniors and disabled people at the local gym, so I am thinking about finding the price to join and trying that out. I miss being in the water. I miss hiking, and riding my bike. I just need to figure out to do all this with this heavy tank tagging along.

I'll see both my regular doctor and the transplant doctors in January. See how that goes.

Hope Everyone has a Happy New Year.

For Transplant related posts click here.