Thursday, September 30, 2010

Mission accomplished….

Today I went on a reconnaissance mission for sustenance. I decided to request a food voucher to use in the main floor cafeteria. It is one small perk that CF patients get here. Since patients order their food from a limited menu each day, long-termers (such as CFer’s) get pretty tired of the same old fare day after day. And since they want us to eat lots to keep our weight up, it’s a way to get more variety and hopefully something will look appetizing there.

So with IV pole firmly in hand and oxygen tank trailing behind me, off I went to secure some lunch. Getting me and my medical “wing men” into the elevator is no small feat. I need to enter, turn around, and reach for the buttons all while trying not to lasso myself or any other unwitting passenger with my hoses.

Once I’m there, my next problem becomes how to throw a sizable cafeteria tray into the mix. Uhh, not happening. I opt to use my balancing skills and pole to my advantage and manage to come out of there with a mini pizza, salad, chocolate milk, bag of cashews, and bag of caramel popcorn (as a low blood sugar backup snack.) Woot woot.

Then I get the brilliant idea that since I’m out and about already, I may as well take my provisions outside to the patio to eat and get a healthy dose of vitamin D. Here I had to ask a gentleman to help me with the heavy door. He graciously leaves his chair by the door and holds it open for me. After thanking him profusely for his assistance, I scurried over to the nearest table because the cobbled pavement was not making navigation very easy.

After setting out my food, I realized something I should have noticed earlier…it was hot!! Holy cow. The same sun which had lured me outside was now melting me into a little medicine-filled puddle. My pride wouldn’t allow me to gather up my food and try to retreat back into the cool confines of the cafeteria—plus I’d have to go through the same door where the gentleman was still sitting who helped me out there in the first place. Shoot! I was just going to have to sweat this one out. The 85 degrees sure felt hotter with the cement reflecting the heat but I got my fresh air and sun fix.

I am now safely ensconced in my room with no desire to attempt any more high adventures today. I am armed with snacks. Mission accomplished.

Monday, September 27, 2010

It’s my prerogative….

Since it’s a woman’s prerogative to change her mind, I exercised mine and checked myself into the Bed and Breakfast on Friday afternoon. Got a room with a view but that’s about all it had. My television displayed a remarkable resemblance to Close Encounters of the Third Kind—fuzz and static. My dear husband jiggled with the cords and managed to get most of the channels viewable. Yippee for technologically smart spouses! Every nurse, respiratory tech, and CNA thought they knew and could fix the problem but no one was successful. Finally maintenance made an appearance the next day and now all is well in my bed-potato world.

When it was time to order my dinner, I realized I had no phone. At first I thought I’d lost my mind because who forgets where the phone is, especially when you’ve spent as much time in this place as I have. Yep, since a phone call equals room service (and I use that term liberally) there was no way to talk to a “nutritional assistant” and get my 45 minute wait for food started. Argh.

While waiting for my dinner delivery, I decided to get out of the room and take a leisurely stroll around 9th West. My IV pole had a totally different idea. Just like my uncanny ability to pick out the spastic cart at the supermarket, I found myself saddled with a less-than-stellar IV pole. Trying to move this thing along the carpeted hallway while simultaneously pulling an oxygen canister behind me would have been comical if it wasn’t so stinkin’ hard to breathe. With this thing dragging me down, I envisioned myself becoming “The Hermit of 914.” Luckily the next day a terrific nurse hijacked a made-in-this-decade pole saving myself from a sequestered existence.

Just when I thought I’d discovered all the deficiencies of my room, darkness came and I found out I had no control over my source of light. For some reason my bed controls were not working properly and I couldn’t turn my lights off or on. Come on. Was the last resident of this room deaf, blind, and comatose??!!

They’ve put me on a 3 drug combination: vancomycin, tobramycin, and doripenem. Because of my recent vanco “red man problem,” I am continually attached to my IV line. No time off for good behavior.

Now I must say my behavior was exemplary until this morning. I woke up about 7:15 a.m. with a twitchy cough. Five minutes later my lungs were bleeding. Scary. I’ve never managed to display my hemoptosis skills while being an inpatient before. I was hoping to make a speedy exit from this place and continue the fun at home but that isn’t looking too good at this point. Now they’ve upped my prednisone to 120 mg per day and I’m in for an emotional rollercoaster ride—gotta love how steroids mess with your brain chemistry. Hanging in there so far.

Thursday, September 23, 2010

It's a love/hate kinda thing...

I love Fall! The cooling temperatures are a welcome relief and the changing colors are dazzling. Home grown tomatoes finally ripen and a part of you can actually believe they might be a fruit after all. The most wonderful time of the year--Fall.

I hate Fall! "Flu shots now available" signs everywhere I look. Public gathering places teeming with germs. Avoiding grocery aisles where fellow shoppers hack and sneeze--giving myself whiplash turning my cart around so quickly and trying to only breathe out till I've exited the offending aisle..."Bacteria clean up in aisle 7 please!" The most aggravating time of the year--Fall.

Most of my life I could gauge how my winter would be by how things went in the Fall. If I managed to make it though the season relatively healthy, I could look forward to a decent winter. But if I caught something, hold on to your bobsled because I was headed downhill probably until Spring.

Well folks, yesterday was the Autumnal Equinox and to celebrate my lungs decided to party like it's 2012. Today lovely hemoptasis began with my first cough of the morning. Argh! I already had a call into the CF clinic and they are going to see me Monday afternoon but I was supposed to call to be admitted in the meantime if things got worse. I prefer to be admitted from clinic because then the docs know whats going on and have already began to formulate a plan of attack. Going in "cold" always seems like it takes longer to get things rolling. If I'm going to be in the Bed & Breakfast then I want IV's going and treatments started so I can feel better and get the heck outta there.

So I'm still home and not sure if I made the right decision or not. I've been coughing up old blood all day long so it was a decent bleed for sure. It's been a very long day. I'm trying to not read too much into this bad start but as Dr. Phil says, "the best predictor of future behavior is past behavior," and man I hate that.

Tuesday, September 14, 2010

Smokey mountains are not so great....

Can I just say...enough all ready! Two fires are not helping my pitiful little lungs be happy. It's hard to know if I can blame everything on the smoke but its not helping I'm sure. The Boulder 4 Mile Canyon fire could have been more nasty for me except the strong winds the first two days were blowing the worst of the smoke away from Fort Collins--thankfully! (Sorry to all the unfortunate down-winders who took one for Team Sherri.) The Loveland fire is closer and we are getting smoke drift here. Yesterday Rheid could smell smoke on his morning walk so he grounded me for the day and I obeyed. :) I've had to up the O2 since I feel more breathless.

All this coincides with my mail order pharmacy messing up my hypertonic saline prescription. Somehow the rx was deleted from the system so instead of being able to order a refill and getting it within the week, I had to contact the clinic and have them send in a whole new prescription which is a two-three week turnaround. Yes, I shouldn't have waited so long to order the refill but with all the medicines I deal with, things sometimes slip through the cracks. So even though I stretched out the last few vials for several additional days, I still went many days without any. On the bright side, I now realize/remember how helpful this stuff really is. How they can charge $110.00 dollars for the salt water and still sleep at night is the ranting for a whole other post, however!

I'm hoping to avoid more IV's but it ain't lookin' too good at this point. Now if Mother Nature could just get on my team too, I'd be smokin'.

Wednesday, September 8, 2010

Feeling a little hip...

We have hippos! Since I have a highly developed sense of procrastination honed over many years of practice, it is amazing I'm not trying to finish these little guys while the birth mom is in labor! They feel super soft and snugly--not sure the pictures do them justice.

One will be for little "Max" (or whatever cute name he ends up with) and one for Chelly, the wonderful birth mother who is sharing her gift of life. Both can hold and cuddle with their hippo and think of each other. I got to meet Chelly last weekend and I was impressed with her openness and personality--she is amazing!
Me and my gang. Maggie's hippo takes a peek at the newcomers.

Later tonight: Ooh! I had to create an addition to this blog. A favorite blog I follow is having a quilt pattern give-away and I get an extra entry by posting this on my blog. I used to love playing paper dolls and so I think this pattern is DARLING. Cross your fingers and maybe I'll win one of three free patterns Lori is giving away. (I've even got my eyes crossed!)

Monday, September 6, 2010

Babies, salads, and degrees, oh my...

Just a few life updates:

I'm gonna be a new auntie again! Woot woot! My sister-in-law and brother-in-law were chosen by a wonderful birth mother a couple weeks ago. Can you tell I'm excited??!! Maggie broke the news to us saying, "I'm gonna be a big sister!" It was so darn cute. I spent part of this Labor Day sewing on my baby/birth mother gift. I made a similar thing for Maggie and her birth mom so Maggie wanted me to make one for her new little brother. We have three weeks to go so I for now I sew and wait a bit impatiently. I'll post a picture when I'm done.

Saturday Christina had to work but she called me to come and share lunch on her break. She works at Mad Greens, a salad shop, so I loaded up on spinach, mandarin oranges and seasoned beef--I could actually feel those red blood cells of mine sucking in all that iron I was consuming (my dietitian would be so proud of me mixing vitamin C with my iron sources for better absorption--amazing, I really was paying attention instead of my eyes glazing over as usual.) Yummy!

Saturday was also Bon Voyage day for Josh. After extensive diagnostics and costly repairs, his car was deemed ship-shape and off he went back to Idaho. He starts his final semester at BYU-Idaho this week. I am so proud of him and his commitment to finish his degree. Over the years he has overcome homesickness, multiple car failure/stranding incidents in the middle of basically nowhere (he's now a bit paranoid and can't say as I blame him), a broken collarbone, mononucleosis, a two year hiatus to serve his LDS mission in Germany, working in Alaska to help pay for school, and the regular college concerns. Way to endure to the end Josh!

Brought back a box of apricots from Utah and made three batches of apricot jam and dried a bunch of apricot leather. Also made two scrumptious Fresh Peach pies for my boys...can you say Domestic Goddess??!!

Started to run low grade fevers this week. Whats up with that?? But holdin' my own.