Wednesday, March 16, 2011

Just one of those days...

Last week I coughed a couple of ribs out and it has been so uncomfortable.  I had to take 3 ibuprofen just to be able to lie down and sleep. I rarely even take one so for me this was giving it the "big guns."  Then after two chiropractor visits a couple of days apart, I finally felt like there was hope that it was calming down.  Well, that was until last night when I had coughing fits throughout the night...now I'm back on the ibuprofen again.  Still if I do anything as strenuous as unloading the dishwasher (gasp) my whole back goes into spasms, then it's back to the couch with my heated corn pillow.

So this morning I was doing my treatments and coughing stupid trying to protect my tender side.  I guess it was more stupid than I thought because I made my nose bleed.   So I'm coughing hunched over to the side with blood on my pj's, my nose stuffed with kleenex, and the pari-jet and O2 cannula in my mouth at the same time trying to stop the spasms and still get enough air.  Crazy!

After my shower and just before noon, I noticed that my twitchy cough was now giving me blood streaks.  Oh joy.  I was supposed to meet an old college room mate for lunch.  I contemplated calling and cancelling but since she only gets to visit once in awhile I really wanted to make it work.  So I said a little prayer and off I went to meet her at Red Robin.  We had a nice lunch together and my little lungs cooperated until almost at the end, then the twitching cough commenced...again.

When I got home, I decided to do another albuterol treatment to try and calm things down.  I was halfway through when a crazy hard cough came out of nowhere and wouldn't you know it, I threw up...all over my keyboard. Eewww! As the slime is oozing its way through the keys to join the dust bunnies and crumbs which are invariably lurking down there, I'm grabbing for kleenexes and thinking my husband is not going to be too happy to hear about his next honey-do project!  I had just got everything cleaned up and under control when the same thing happened again...missing the keyboard thankfully but hitting the floor instead.  Eeww X's 2!

Now I'm doing my evening treatment and the hacking and twitching is again out of control. And my streaky friend is back.  I'm so hot and sweaty I turned on my desk fan to cool off--all this coughing turns up my inner thermostat to "sweat like bullets" levels.  And of course this day wouldn't be complete until, you guessed it, I threw up again while typing this post.  Eeww X's 3!  (Thank goodness for a desk chair pad that has also been on the losing end of my day.)

I just decided to finish up with an additional albuterol treatment because at this rate, there will be no lying down in my near future if the twitchy lungs don't call a truce.  I'm sure my bed is thinking,  "stop the madness--don't make me your next eeww X's four victim."  Can't say as I blame it.  My track record hasn't been too stellar today.   Pleeze stop the wheeze!  It's just been one of those days.

Tuesday, March 15, 2011

A great idea...

When my women's group at church (Relief Society) announced we would be participating in a project to make dresses for little girls in Africa, I was sew excited!  Thanks to the efforts of a very patient mother, I love to sew.  And the great thing about these little dresses are they are sew super easy.  (Can you tell I'm having sew much fun with sew??!!)  These little dresses are made from pillowcases or from regular fabric cut and sewn just like a pillowcase.  With cute bias tape, you can make even plain colors have a lot of personality.  I made 2 dresses before the service event--the leaders wanted a few people who already knew how to put the dresses together so  we could help others.  I made a couple more little dresses that day and then took 4 packets home to make later.  I am in love with these little dresses.  The little African children look so cute in them too.  Here are a couple of pictures from the Little Dresses for Africa website showing some of the girls with their new dresses on.

Little pillowcase dress girls from Mozambique


More little girls in some new dresses

Then here are a couple of the dresses I made at home to send with the almost 300 our Relief Society donated from our day of service.

Dresses in 3 different sizes

If you want to know more about this wonderful organization, check out their website @ http://www.littledressesforafrica.org/blog  There is nothing better to lift your spirits than helping others. Showing love and charity to others is what this life is all about.  It feels great knowing you can make a difference in the lives of children.

Included in our day of service was quilt tying, ear comfort pillows and heat therapy rice bags for hospice care, sign-ups for volunteer opportunities in the community, a blood drive, and collecting baby items for local mothers in need.  Although our gymnasium full of tables and sewing machines resembled a sweatshop, you could feel a tangible spirit of love among all the women united in a cause greater than themselves.  It was a remarkable day.

Friday, March 11, 2011

When you can't win the mind games...

Sometimes even though nothing is really wrong, everything still seems off somehow.  That's what I've been struggling with the past few months.  It's like I get up in my head and unwanted thoughts keep popping in and then I start thinking through different scenarios about the future, my health, etc. and it just gets me down.  When you realize things really won't get better, only worse, it gets to be a bit much to deal with.  I'm not whining, just trying to get some things out of my head so I can move forward.

I started this blog in part to give others who are lucky enough to know what a Delta508 is (for those not initiated in CF lingo, this is the place on my DNA strand where things got a bit off track and mutations happened...at least I'm not a hero in a half-shell) a glimpse into my life and hopefully help them see that a person diagnosed early in life can go on to live their dreams of being married, having children, and contributing to society.  I wanted it to be an honest look at my life and although I generally try to be positive in what I choose to share here, I have come to realize that if I don't share some of those harder times, the mentally tough times, that other cysters and fibros (females and males with CF--kinda the only cool part about the crummy name someone without a stitch of imagination decided to call this disease) who are struggling in their journey will think they aren't "doing it right" or they aren't "normal" or they aren't "as strong" as the people they read about online.  I never want someone to read SassyCastle and think, "Why does it seem so easy for her when things are so hard for me to deal with?"  I don't believe it's a weakness to share your tough times; I have confidence and faith that those I share those times with are not judging me and are strong enough to process the information and walk alongside me through them.  A burden carried totally alone is an unnecessarily heavy one.

Well, now I want to share a cool video my newest friend, Amanda, sent me from Australia  Several months ago she responded to my post on a CF website that I had an older TheAIRapy vest available to someone who may need one.  She lives in Australia and has a darling little girl with CF.  Because vest systems are so expensive, they are not readily available to CF'ers there.  A fantastic RT from my CF center hooked me up with a tiny vest to send along with it.  So $300+ in shipping costs and thousands of miles later, Amanda now has the technology to give her daughter one more weapon to fight with.  Look at what a little angel she is!

video


I wish I could figure out why the attachment she sent came sideways (maybe since she is on the other side of the world strange things happen) and I wish I had the technical know-how to fix it but you can see her anyway.  I had to brush away the tears when I saw her, I love her without even knowing her name.  I can feel her spirit.  You go girl!!!