Friday's Post

Sorry for not posting Friday. Internet was on the fritz. I suppose that means you get two posts this week, weather permitting. Basically whenever the weather gets crazy (snow, rain, wind) I lose internet. The joys of living in the mountains I guess. This weather is not typical for a California May. By now I usually have a nice tan going and have the best swimming spots picked out. With all the rain and cold, I haven't set foot in a body of water yet. And we don't get tornadoes that touch down. Wednesday, four touched down in my county. Luckily, no one was hurt. A lot of property damage but that can be fixed.

Not much news in the CF world. May is Cystic Fibrosis Awareness Month so on weekends various cities have been holding Great Strides events. No miracle drugs on the market yet. Various drugs in the trial stages, but that doesn't mean they'll make on the market. So it's keep your fingers crossed and hope that something pans out.

I still haven't been listed for a transplant. I'm not sure how much worse the transplant center wants me to be before I can be listed.  I go back in July to see if there's any change. This part of waiting is frustrating. I'm too sick to hold a job. My day is spent doing treatments and therapy. Sometimes it feels like I don't have a life.

I have found ways to keep busy. I preview movies for the monthly movie night with my bible study group. I sew, I write. I experiment with cooking. And I read. So at least I'm not sitting around all day feeling sorry for myself. I just get bored sometimes. I think that's the only time I miss living in the city. I enjoy the quiet of the mountains and the fresh air. But since I don't have a car, I can't go anywhere when I'm bored. In the city I can hop on a bus and go somewhere else for a change in scenery.

Maybe I should take up gardening.

I'm Famous!!!!!

Most of my readers know that I don't post a lot of personal information. If it isn't about CF or any of my other blog subjects I don't write about it. A couple of months ago my dad and I agreed to have an article written (to see if there was an audience for a book). I'm not saying that it is taking off like wildfire, but there seems to be some interest in the story. There's even a picture of me and my dad at the bottom. Pretty cool. Guess I should start writing the novel.

So Sorry for Being MIA

The title about sums it up. I was planning on taking a month off during summer time so I could finish school, but things went out of control. There were family issues, hospitalizations, family in the hospital, more hospitalizations, more family issues. It has been one crazy train wreck.

I did manage to finish my degree (picture to come soon). It's the most expensive piece of paper I own.  I am hoping for a calm May so I can catch up on all my blogging. Lots of ideas.

I wish I could say that with my degree came a snazzy job, but as of right now I really can't work. Hospitalizations are occurring each month. When I'm lucky I get two months out of my prison cell.  One would think that I would have plenty of time to write. This seems to be a challenge since no one wants to lug my computer back and forth during my hospital stays. I guess it's a sign that I should get something lighter, unfortunately that requires funds I do not have. I am thinking of just taking pen to paper and typing everything up when I get home.

You will be getting my random thoughts after the fact, but at least I wouldn't be MIA for such a long period of time.  It's just a thought.

To top off all the craziness that's been occurring at home and with my health, I also lead a movie night for unmarried Christians. It's a once a month event. I preview a selected movie and write up discussion questions. Just trying to get people to think about what they watch. I'm all for a good comedy, or action movie, but a lot of movies out there have no real plot to go by. And I still find swearing very trashy.

I have thought about posting the movie titles and questions on here if anyone wants to have his/her own discussion on the topic. I'm just not sure if that's the direction I want this blog to go in. Maybe I'll post it on Book Keeper's Attic. I've been wanting to do a media section on there. Mostly, was planning on ranting and comparing movies to books.

Anyways. I am back. Hopefully for good this time. That way you guys can look forward to my weekly postings about my fight to inhale for a long time to come.

September is Here

It's September.  Everyone has started back in school, and even here in CA we got a respite from the heat.  Not sure how long it will last, but it's nice.  While everyone is going back to school, I am at home trying to get my writing muscles in shape after a few months unplanned hiatus.  We will see how that goes.  Maybe in a couple of years you'll find me in the best sellers list.

My niece celebrated her second birthday yesterday.  She is growing so fast.  I still have a framed photo of the the first time I held her perched on a shelf in my library.  Now she's running and learning new words rapidly.  I'm excited about what the future holds for her, and pray each day that I get to live to see her grow up.

I must say the party was great.  My brother in law is great when it comes to preparing food and his daughter's birthday was no exception.  The cake was a cool creation by a family friend (she owns a cake business in town).  My niece was showered with gifts.  I have to say that there was a nice balance between toys and clothes.  Of course her final gift (provided by my mother) was the star according to my niece.  My mom had found a bicycle that was my niece's size.  The little girl wanted to test it out as soon as she saw it. 

When I finally got home, I took a three hour nap.  I guess the heat of the day got more to me than I thought.  I miss the days when weather really didn't bother me.  And if I did get hot, the hose was enough to provide relief.

For the rest of my Labor Day Weekend, I plan on staying home and possibly vegging on sci fi movies.  Haven't done that in a while and I'm in a Stephen King mood.  If tomorrow is cool enough I might even treat Mick to a walk in the park.  If there's mud, he'll be one happy puppy.

Been Awhile

I know I've been MIA for awhile.  Had quite a bit on my plate.  Luckily, it wasn't all CF stuff.  I went back to school.  Finally finished the last class I needed for my degree.  I won't get my degree for a few months, but all my requirements are finished.  I can now breathe and seriously cut back on the studying.

My family through a surprise party to celebrate my finishing school.  I think we were all happy that I finally pulled it off.  Took me ten years, but I did it. 

Now that I'm done with school, I've been spending more time with my adorable niece and doing my crafting.  Let's just say I can't wait for winter to hit, because I've made some cute winter pjs and a cozy looking robe.  Besides all my crafting, I've been getting back into the church.  Don't worry, I have no plans of getting all preaching on here.  I just figured that it was time for me to stop being so wishy washy.  And I was sick of having flaky people as friends (I am not referring to you guys Mary, Darin, Patty, and Joven).  I guess I just hit that point where I wanted more meaningful friendships and a better relationship with God.  So I dropped a lot of burdening friendships (literally my phone book looks kind of thin now) which also means I cut a lot of stress out.  As for the friends I chose to remain in contact with, well they're the ones whom I have to call real friends.  We share ups and downs, special events.

So now I'm trying to get back into the groove of things.  Get back to writing and being consistent with blogs.  So hopefully you all can bear with me while I try to get back into it all.

If You Try to Relax...

What I had planned on being a couple of relaxing weeks, did not turn out that way.  Mostly, it wasn't a bad thing.  I just wanted to do absolutely nothing for a bit. 

Last week, I ended up having to take my dog to the vet.  He was acting all drunk like that Sunday and then just started shaking.  After a few nights of no sleep, I took him in to the vet on Wednesday.  Since I'm new to the area, I hadn't established a new vet for my dog.  So Tuesday I was doing a quick search to find a good vet nearby (I don't like to travel more than 15 minutes for a vet, just in case it's serious).  Upon finding one I had to schedule an appointment.  The soonest I could bring my dog in was early Wednesday morning.  Luckily, it turned out to be nothing life threatening.  My dog had managed to hurt his hind quarters in some way.  He was in a lot of pain, but nothing permanent.  The vet prescribed doggie pain killers (this is after she twisted him into a puppy pretzel).

You would think that I would get to sleep now that my dog was drugged up, but no.  My sister's graduation was that night.  So I had to attend that.  She completed a very difficult program in two years (only eight people graduated), so it was a big deal.   The department put on a nice dinner for the graduates and their families.  I devoured a prime rib (with class of course).  I was able to have some quality time with my goddaughter that night as well. 

After the graduation, still no rest.  I needed to finish up my sister's grad gift before her party.  Since she's into Asian designs I made her a hair clip with feathers.  I also made a birthday for a friend of mine.  Photos will be posted on Creative Yarnings.

Saturday was the big party.  I had the job of watching my niece while everyone set up (horrible job, I know).  She's quite cute.  She was fascinated with the cows.  She kept running to the fence and mooing at them.  She collected leaves, ate strawberries, and just plain ran around.  It's fun spending time with her, because the world is still a new place.  She has to see everything and there is so much, she runs from place to place.

Once the party started, all the grandparents wanted to take care of my niece so I went back to talking with the other guests.  The food was great.  And there was tons of it.  I ate so much, I thought I'd burst.

My mother and I did not get home till close to midnight, that's how long we stayed at the party.

This week was a little more relaxing.  I did have a doctor's appointment but that will be a different post.

I almost have all my stuff unpacked from moving.  It's kind of nice not having to search through boxes for stuff.  A few things have vanished.  I'm guessing a box fell off during transport.  

I received Cayston.  After only a week on it, people are saying I'm more energetic and have more colour in my face.  I just notice that I'm more hungry.  Not sure if it's the Cayston, or if I'm just starting to come back up health wise.  Either way it's nice.

That's everything in a nutshell. 

Who's the Expert?

I saw my normal CF team on Monday and woo hoo no insulin.  Actually, it's more like no insulin for the next six weeks.  I'm supposed to monitor my sugars and then we'll discuss what to do at my next appointment.  Apparently, falling asleep right after an injection is not a normal reaction.

Also, my A1C is at 6.1 which means I'm pre diabetic, not diabetic.  At 7.0 I will be diabetic.  So I'm not really sure why the doctors in Stanford put me through so much headache.  I am aware that if I go through with having a transplant, I will become full blown diabetic.  So that is something to think about.

My weight is down.  So it's back to increasing those calories, all the while trying to get back into shape.  Not an easy task.  My doctor said that if the insulin wasn't putting me to sleep, he would recommend my staying on it for the weight gain (insulin can be used as a growth factor).  But falling asleep makes it hard to work out :o)

My PFTs are up by a smidgen.  But they are up.  So that's good news for me.  And to top it off I get to start Cayston!  I have to wait for it to be delivered, which I was warned it can take a couple of weeks.  But I get to start it.  Hopefully, it'll put off my needing a transplant for a while longer.

Some bad news.  Someone got the crazy idea that the FDA should approve the pancreatic enzymes that most CFers need for proper food digestion.  Problem is, not all brands are created equal.  I spent years trying different brands until finding Ultrase.  Ultrase is the only one that works for me.  With other CFers, it's the same thing.  They have a specific brand that works the best for them.  The FDA has only approved three brands and Ultrase is not one of them.  I have about two weeks left of my enzymes and then I'm going to have to switch to a brand that is sub-par for my body.  This really sucks.

I guess someone from Stanford complained to Davis that I act like I'm the one running the show.  It's kind of funny really.  What adult CFer does not act like they are running things?  We spend so much time at appointments, in hospitals, having to monitor ourselves that we know what's going on.  Sometimes before the doctor even figures it out.  A doctor's power is dependent on the patient's willingness to adhere to the treatment plan.  I'm not going to go through with a treatment unless I fully understand what it is for, what the side effects are (long and short term), and what symptoms I need to look out for.  Doctors may be experts on the disease, but we are experts on our own bodies.