Wednesday, April 20, 2011

Head up, shoulders back...

I've been waiting to give an update on my clinic results and I finally got most of my questions answered. So here goes the run down:  pft's remained at baseline--yippee; blood levels looked good except for iron (very anaemic even after upping the iron supplements); no rib fracture seen in x-ray so ribs rubbing against inflamed tissues is the diagnosis--might get some relief after a course of IV's or might not;  x-rays did show more infection present;  sputum culture at first showed no MRSA (got cocky and did the happy dance) only to find out today that MRSA did indeed grow out but in smaller numbers (grateful for decrease but bummed it's still there) so clinic will try to get a 2 week course of Zyvox approved through insurance to hit the MRSA;  pseudo is the current attention hog in the germ department but I'm trying to hold off on IV's for a bit longer; found out I am officially 5'2" now instead of the 5'3" I've been since junior high, just part of my geriatric charm ...shrinkage;   A1C score was a 7.5 which surprised me since my blood sugars have been lower without the steroids; and then for the first time my hormone levels were checked and they are all out of whack--which explains a lot!  That's it.  That's enough.

Today was my first ever physical therapy session (please notice the "physical" part of therapy although I could definitely use the other kind, especially after days like today.)  Look up compliant patient in the dictionary and there will be my picture.  Last week my CF team again admonished me to work on strengthening and growing bone because of bone density issues thanks to the prednisone and malabsorption of nutrients.  So off I went to PT to learn how to "properly" exercise so I don't fracture anything while trying to fix things.  Not sure what I expected but that wasn't it.  I did learn I have horrible posture however so I'm to focus on correcting that first.  My "good posture" muscles didn't much enjoy finding out they were slackers and pitched a fit but I showed them who's really in charge. On a fun note, I did surprise and impress the therapist with my strong abs--the only perk to coughing for a living.  I also scored a cool stretchy band as part of my workout routine.

Since my departure from National Jewish coincided with the departure of 35,000 fans from Coors Field (Go Rockies!) I decided to stop by a quilt store and let the traffic dissipate a bit. I'd already had my fill of Denver traffic earlier when it took me a half hour to go less than a mile due to a semi accident in a construction zone.  I completely broke the "check in 30 minutes before scheduled appointment" rule and was even 15 minutes late for the actual appointment.  I was working myself up in the car until realizing getting frustrated wasn't going to get the parking lot moving so I went to a zen place and prayed they wouldn't make me reschedule.  They do have scary signs posted telling you that is their prerogative.   Being told I needed to reschedule, I could just picture myself  beginning to babble incoherently with words such as gas prices and time being the only words the receptionist could understand before I exploded into little bitty pieces...did I mention something about hormones earlier!   At my traffic oasis I found the backing for my latest quilt project I'm doing with a group of girlfriends.  I'm excited to see how it all pieces together.

Keep catching myself slumping over while typing this blog--think this posture thing is going to get on my nerves.

p.s.  Oops, forgot.  Here is the photo I promised last week.  Did I mention hormones?
Pinwheel Baby blanket I just finished.
The lighting makes it look more yellow than it is.

Wednesday, April 13, 2011

Doesn't look a mile over 99,999...

He's a looker!

My little 2001 vortex blue beetle and I have been though a lot together and yesterday he rolled his odometer--100,000 miles!  Toot that horn and celebrate.  This is the first new vehicle we ever bought (we usually purchase new-to-us models) so it is the first time we've put all the mileage on ourselves.  My little fanny (or as my daughter would be quick to point out--"lack of fanny") has been in the driver or passenger seat for 95% of those miles so I've left quite an impression on my blue buddy.  :)

Granted, with digital odometers, rolling an odometer doesn't have quite the build up it used to.  Now you don't get to see all the 9's in various stages of progression--like an odometer eclipse.  Then finally they are all 0's  and you feel like you just got a teenage eye-roll--you know, like the ones you used to give your parents when you thought they weren't looking.  But now as a parent you realize you don't have to see them, you can feel an eye roll clear across a room.  So I guess I didn't get away with as much teenage angst as I thought I did--sorry, Mom and Dad.

My blue buddy and I are a lot alike:
1.  We are definitely not as young as we used to be and require additional maintenance.
2.  We each put off getting "tune-ups" until something doesn't work right any more.
3.  We have both had an unfortunate run-in with  handicapped signage.  (Mine in the form of needing a placard to hang from the rearview mirror so I can park by a handicapped sign.  His in the form of having a new driver take him to the high school parking lot to practice driving manuevers and accidently plowing down a handicapped sign while trying to leave a parking space.  This was his first scratch/dent and a traumatic experience for my son as well.)
4.  We both want it to be a long time before we need a complete overhaul.

Here's to a smooth road ahead of us!

Sunday, April 10, 2011

Clinic here I come...

Well, I'm putting it off no longer and am heading off to clinic tomorrow.  I need to meet with my team and decide what to do about my insurance's latest trick.  Since my colonization with MRSA in 2009, if not on IV's then I have to take Zyvox (Lineazolid) every other month to keep it in check.  Well, I decided to try and push it out this last time to 2 months since I was feeling ok and I really wanted a chance to get a better handle on my continual yeast infections.  My tongue had gotten very sensitive with heavy fur in some places and raw patches in others and this despite eating yogurt, drinking keifer, and taking acidopholous (spell checker doesn't even know how to spell that so I don't feel too bad if I did get it wrong.)

I'm not sure if my absence from taking the medication was an issue but for whatever reason my insurance denied coverage for the prescription even with a prior authorization in place.  Crum...crum...crum.  "Hey insurance company dudes, I know that this rx is over $5,500 for a month's supply for you but that is much cheaper than your share of a month of IV's or a hospital stay.  Come on, think it through people.  It's not like I get my jollies taking this stuff either--it makes me feel yucky--but the fact of the matter is that it works so I put up with it.  I wish you would too."

While I am there, I am also going to have them take a good look at my ribs.  Once I finally got the two ribs on the right side back in place and feeling better a couple of weeks ago, the ribs on the left decided it wasn't fair for the rightys to get all the attention so they began to put up a fuss of their own.  One more trip to the chiropractor later I could lay down and sleep without sharp pains waking me up every time I rolled off my right side.  The treatment helped and the muscle spasms went away but the initial place in front where the rib shenanigans began has not gone away.  I think I'll ask for an xray just to see if nothing is cracked.  Crazy stuff.  I don't know if other cystics get rib pain issues but they are not very fun.  It is kind of funny though that it's in to April and my only "medical expenses" so far this year have been chiros--a weird kind of blessing I guess.

Anyway, hopefully my pfts will be somewhere near baseline and it doesn't hurt too much to do them properly.  If I am going to pay to see the docs, I want to get all the bang for my buck I can get.

Today I finished binding a baby quilt I made.  I'll try to post a picture of it after I get home tomorrow.

Saturday, April 2, 2011

My joy is full...

Today I found out something wonderful I've been hoping and praying for will be coming true.  At our LDS General Conference held this morning, it was announced a temple will be built in Fort Collins, Colorado.  I AM SO EXCITED!  It was one of those moments when you are so surprised and happy that the tears come and you experience pure joy.  Overwhelmed with emotion, I cried and cried.  My mom called and I cried.  I called a friend and cried.  I called my sister-in-law, who also lives in Fort Collins, and cried.

I love attending the temple and now since I am at an advanced age (can't believe I said that) and have the time, I would love to be a temple worker.  But that has been impossible for me to consider at the Denver location.  By the time I figured in travel duration (3-4 hours in regular white-knuckle traffic and more if traffic is heavy or there's an accident) plus adding the temple shift itself, I would not only be exhausted but my O2 wouldn't last long enough.  

As it is now, it can be difficult to just fit in a session.  In order to get treatments in before a morning drive to attend the temple, I must wake up about 6 a.m. which can be extremely hard to do if I've spent the night coughing up a lung. Despite that, getting up early in itself wouldn't be so bad except once I'm sitting in the peaceful, quiet room I have to fight to stay alert.  It is so frustrating wanting to be awake and attentive and you find your head bobbing despite all your I-must-stay-awake tricks.  

Now my goal is to stay healthy long enough so that I CAN be a part of this new temple.  I am ready to grab a shovel and start digging myself just to speed up the process...a process that can take several years to complete depending on land availability, zoning approvals, and then construction with all its inherent delays.

One thing I don't have on my side is time so I'm very impatient when it comes to waiting for future events.  Long-term thinking/planning is something, as a cystic, that is hard for me to do because eventually my mind works its way to "what if I don't live long enough to______" and I don't like going there.  And with my health getting progressively worse, my "future" time frame seems more restricted than ever.  Heck, at this point I don't even like planning more than two weeks in advance because I don't want to be disappointed again when things don't work out because I'm sick.  So here's to speedy construction workers (if there is such a thing) and cooperative weather. 

For my bloggy friends who may not know much about our temples, basically, in the temple we are taught, we make covenants, and we are promised blessings. We receive ordinances that enable us to live in the presence of God.  For more great information about temple worship you can go to

Just can't get this smile off my face!  

Denver Colorado Temple - my current closest temple

Idaho Falls Idaho Temple - temple I was married in