Nothing to see here

There aren't as many people at my house as there used to be.
Gene is in the Navy. Neil is in the Air Force. Travis is at WSU. My house is quiet. Gus is a senior.  Bay is a teenager. I have no kids in elementary school. I am a Crossfitter. I'm a bit bad ass but not as bad ass as people like to think.  My lung function is either "stuck" or "stable" at 57% depending on how my mood is.

59

Blurg.

Why I Hate Nebulizers

Cause that's why.  I just do.  I hate them.
They are time consuming and noisy and I am stuck like in the old days with the phone cord....  I am tied to the damn machine.  In the mornings with 5 lunches to make, I set the compressor on the counter where I can aaaaaaalmost reach the fridge AND the sink AND the counter at once.  I was just doing 3 nebs a day.... two meds at night and one in the morning.  Now I'm up to six.  (This is a whiny post.)  All the meds I take in the nebulizer are meds that I can't become resistant too and are meds that have saved a lot of people's lives.  So I really, fucking, shouldn't be complaining.  Sigh.  But I damn well fucking hate them.  Whine over.  You may now return to your regularly scheduled program.

Why I hate running

Cause that's why.  I just do.  I hate it.
Now I'm becoming a runner.  It took a friend to start to run with.  It took a lot of walking.... well.... a month of walking.  It took a realization that the walking that used to be hard was no longer challenging.  Then we got an app.  (Cause who does anything without an App nowadays?)  And then we started running.  I never, ever wanted to run.  Or walk for exercise.  EVER.  I hate running.  AND.  I hate walking.  So I got a new BFF and we started walking in September.  Now we are runners.  We don't love it.  BUT we are running.  Granted, the word "running" might be a stretch....

I am a runner.
I only run 3 minutes at a time and it's hard.  For 30 minutes me and me-BFF alternate timed runs and walks.  I have fun cause I love my BFF.  But it's hard.

But I have stayed off antibiotics for 2 weeks.  But we are increasing our running time by (albeit tiny) increments.  And we are sticking with it.

A tangled mess.

One thing I like about my pump: not having to grab my Pens before leaving the house and then having to have them with me.  Now I just LEAVE the house.  Pump on board.

Five things that I DON'T like about my pump:

#1   (And the most irritating) is people who do NOT have diabetes telling me HOW much I'm going TO  LOVE my pump.  I'm okay with medical people or people who KNOW someone with a pump.  But to everyone else sipping their  beer/wine/cooler/mocha/monster:   Really??  Cause why don't you try sticking this giant ass needle subcutaneously into YOUR stomach and get back to me or MAYBE you should:  just.  Shut.  The.  Fuck.  Up.

#2  Tangled Up Tubing Syndrome (TUTS)  I sleep with my pump next to me or under my pillow but wake up with it impossibly wrapped around my body.

#2  Snagged Tubing Syndrome (STS).  Twice I have snagged the tubing on a door handle and although it does not hurt to rip the catheter out, it is a weird sensation.  And then it is aggravating to have to go through a whole new set change and stick.

#3  Realizing that I am walking around with excess tubing visible.  It just looks weird. 

#4  Set changes.

#5  Beeps and alarms.  Essential and handy.  Possibly life-saving.  But that doesn't mean I have to like them.

#7  Inspired by LisaP.

Acting quickly in the face of potential emergency? (The non-chicken kind.) Our score? EPIC FAIL.

I have outlined the protocol for using the LIFE  SAVING  GLUCAGON three times now.  It's not complicated.  I started with Gene tonight and said : "So.  Gene.  You know the protocol for the glucagon, right?  To which Gene replied:  "Huh?  Oh.... you mean your shot thing?  Yeah."  Then to prove himself he turned around and opened the WRONG drawer and dug around before saying: "Uh... wasn't it in HERE?  (Giggle)".  Gene - FAIL.
Then I asked Gus.  He promptly opened the correct drawer and quickly located the bright red box containing the shot.  Then (just as I was feeling the love) he grumbled:  "Except I can't open it"  And I said: "It should just pop right out" (referring to the little syringe).  To which Gus answered: "No.  I mean I can't get this red box open".  Gus - FAIL.
Obviously Trent would not let me down so I sought comfort from my rock.  Trent nodded assuredly and said: "Well.  FIRST we call 911".  Me:  "FOR  FUCK  SAKE!!  DID you NOT read the paperwork I gave you?  It CLEARLY  states: DO  NOT  CALL  911  FIRST!!  FIRST  ADMINISTER  SHOT - THEN call 911.  (It's even in BOLD TYPE and CAPITALIZED.)  Trent - FAIL. 
Tomorrow I will check Neil, Bay and Mike.  Then I will try to insure that I never have another low blood sugar episode.  JEEEEZE.

Whine

Three nebulizer treatments twice a day is sometimes six too many depending on the day.  But it really, really, really is ALWAYS  TWO too many.  Gah.  I do not have time to sit here for an hour twice a day.  I actually DO have time.  But I do not WANT to.  Whine over.  For now.  (And could they not make the God-damned machine a little QUIETER?)

Catchup, Aisle 3

Too many catch-up style posts.  This will not be fun to read in the years to come.  Too many gaps.  This portion of family is life if very scattered.  We eat meals together every night but sometimes that seems like very little to hold the whole fabric together.  Gene is in between sports.  Needs a job.  Loves his girl.  Thinks we are fine, but annoying.  Neil is in danger of becoming chronically middle-childed.  He rarely needs bribes because he has his shit together and so often gets nothing whereas Gene and Gus are always on the take someplace.  Trent and I need to address that.  If I were Neil I'd have figured out the advantages to holding back a little, putting forth a little less effort but I was WAY sneakier than Neil.  Bay is Kindergarten-Pop-Culture-Girl.  If it's the fad, she wants it.  She is in the middle of a group of girls who will probably be pretty tight right through school.  It will be fascinating to see this group given that she stays with them through high school.  Gus rides Neil's big heavy-duty dirtbike and has no fear.  Trent and I use up all available fear as we watch him.

In a brief conversation with Gene a few nights ago I realized that he really doesn't appear to understand the gravity of CF.  I was very annoyed about this until I realized (in rather an epiphany) that I have always explained to people that when you ALWAYS "have" something, it is very different emotionally and psycologically than "developing" something.  The journey is vastly different.  This makes me look brave and daring and heroic and all those fabulously admirable traits.  The truth is however that I don't know any other way,  I could impress the hell out of people just by telling them how many pills and tablets and now even SHOTS I take a day.  But it's just a number and it takes a minute and I can (impressively) swallow many pills at once.  (It's not as impressive as you might think and it's not a skill that you can be paid for, unfortunately.)  BUT the epiphany came when I realized that I expect Gene to understand the "gravity" of the "situation" although I go to great lengths to down play it and work around it in my day to day life.  My kids grew up with me taking pills, doing occasional Home IVs, being healthy, being sick, going to long, drawn out, far away doctors appointments.  My kids knew someone who'd had a double lung transplant long before they knew anyone who'd had a broken leg.  I never gave them credit for adapting to having a sick mom in the same way that I have adapted to being a sick mom and GOD  FORBID anyone call ME sick!    So why in the name of GOD would I be annoyed that the kid would take CF in his stride.  Wasn't that my goal all along?  And isn't it still?

Irish Girl and her Scottish Doctor

A very interesting visit with the CF Team at the UW.  (Good time had by all.)  Apparently they still consider my outlook to be extremely good (read: live to be "ripe old age").  I'd kind of lost faith in that possibility.  I've never been so consumed by CF than in the last six months nor have I ever been so compliant with my CF regimen than in the last six months.  This visit changed my typically fatalistic attitude.  It won't make me do anything differently,  but it presents a different set of goals.  It's worthy of  Arsenio Hall's list of Things That Make You Go Hmmmmmmm.

Thank Jesus for Gus

My blog now contains a disconcerting number of CF- related posts (currently 28).  Thankfully Gus-related posts are currently at 31.  (And I haven't even mentioned his mohawk yet.)

off.on.off.on.off.on.off.on.off.on.off.on. (You get the idea.)

The ABPA is on (again).  The results from the sunshiney state of California are in.  I do have ABPA.  Given that I am feeling relatively good right now I am somewhat glad to at least have a result (again).  My steroid dose is not very high so therefore I can manage my diabetes without too much complication.  However, I do believe I need to go on a more diabetic-style diet.  I love my carbs and without the steroids I appeared to be able to have them and eat them too...  but that diet won't work with potential long-term steroids.  The good news here is that the modern diabetic diet is not horribly restrictive and extremely healthy for the whole family.  Therefore the whole family will be making this healthy change with me.  (If you see the whole family don't tell them this, they don't know it yet).

and they call us patients because????

The local lab requested the wrong blood tests.  This may take a while.  I wish my blood were on a Frequent Flyer Program.  I'll bet Capistrano is nice this time of year.

Really?

Evidently I do not have ABPA  First off, how about a little aside on the blood work.  (Believe me, THIS is worth an "aside".)  While having my blood drawn I asked for an approximate time-line for the results.  The kind and talented lady said "weeeeeeellllll we don't do this particular test very often and it's going to a lab in San Juan, Capistrano... "  Seriously?  Yes, seriously.  I will no longer complain about the $16 copay for blood draws.  I'm only familiar with the name Capistrano because of the old song....  I wasn't even certain it was a real place.  Well, it is.  And the people of the lab of Capistrano have verified that I do NOT have ABPA.  So.  Nice.  Now I can come off the steroids maybe?  Apparently I will know more next week after there is some kind of discussion as to the next best step.  I have finally gotten my head around the new schedule and it's not that bad....  Vest, Nebs, Exercise, Inhalers, Maintenance Azithromycin.  It's just a bloody good thing I'm not trying to hold down a job at the same time.

Payoff

Today was the first day in three months that I met my baseline FEV1 number.  (I am aware that it coincides with complete and total compliance...)  1.01 was my lowest level ever, back in September.  Today I reached 2.38, surpassing my baseline number of 2.27.  I am very, very, very, very happy.  New regimen: Ventolin, Saline, Pulmozyme, Vest, Exercise, Steroids.  The steroid dose completely screwed with my blood sugars to the most ridiculous level.  (That would be: the "Check Blood Sugar Before Driving Level")  I am officially tired of posting about CF.  (It reminds me of when I was officially tired of the kitchen remodel.)  (And look!!  Now I have a new kitchen!!)

Time

While I recognize that I have gotten off easily my whole life in terms of not having to adhere to any hugely demanding treatment schedule I still find it difficult to adapt to the fact that I now need to fit my life around my treatments.  I have no idea who people put up with this shit prior to computers....  I could give Gus a run for his money in intolerance if I had to do this crap without being online.

I'm going to add a second nebulizer treatment twice a day which only puts me up to 40 minutes and I can do my Vest at the same time.  My cardio class starts at 9am on Monday, Wednesday and Friday, so I can actually get all this done before working out after the kids get on the bus at 7.30.  Not bad....  but the weekends are tricky.  Tuesday/Thursday's classes start at 8:00am which means that I should come straight home and do my nebs and Vest then, but I'm easily distracted by house/school/dinner by mid-morning.  I actually recognize this as bullshit, I really do have the time to fit in all treatments.  I just need to stop thinking of it as optional.  

and the answer IS.... (ahem. ahem. aaaaahem. wheeeeeeeeze)

Allergic Bronchopulmonary Aspergillosis

The good news here everyone is that I get to add a new acronym!!  Yay!!  APBA!  Nice.  Obscure!!  I'llllllllllllllllllllllllllllllllll take it!  The little blue letters above will take to you an explanatory link.  You may notice that MY symptoms are essentially listed in a nice orderly fashion in the article.  They may even have copied and pasted from my blog.  (Although I try not to mention the word "sputum" I mean?  Really?  I can't be putting words like that on my blog.  No siree.  Yuck.)  Mike: I can't believe you missed this.  Seriously.  We should be ashamed of ourselves: veterans like us.  Interestingly, it all came to together yesterday when my CF docs at the U started asking about a lab I did weeks ago (said results have evidently been sitting in medical-paper-pile-limbo since) which showed my IgE level over 700.  Apparently the whole thing is pretty conclusive now.  We'll see what a few weeks of steroids will do.

And about that....

Yuh.  Um.  I'm not going.  You can't make me.  Even Trent agrees.  I received a pile of paperwork from the "other" pulmonologist's office a few days ago, mostly focused on sleep disorders.  However it was the letter that included the following instruction that put me over the edge:  "if you do not completely fill in the 7 Day Sleep Log we may have to reschedule you".  SOME people (kind and patient people might not take offense) but this ticked me off.  I called the office and asked if it was necessary for me to fill in ALL this paperwork, particularly when I am an existing patient within their practice AND because I am NOT being seen for any kind of sleep disorder.  She said that I could skip the financial portion, but all the medical stuff needs to be filled in because "this IS a new doctor for you".  If I were still feeling crumby I'd go.  But, I really doubt this visit would bring me anything but (further) annoyance.  If they can't access the most basic of my medical records through THEIR clinic then this will be a fiasco.

My numbers are still getting better.  I'm at 1.82 now and working out consistently...  I don't need no new doctah.  I'm fine.   And anyway, I'm busy that day.  You concur, don't you Mike?

blah blah blah more CF stuff blah blah blah

I've figured out that if I post something CF related and it's regarding a fluctuating health issue then I am kind of tied into updating said issue.  Not easy for someone who rarely shares.....  (All of a sudden I seem to be sharing waaaaaaay too much and waaaaaaay too often and I'm waaaaaaaay out of my comfort zone.)  My PFT numbers have continued to rise.  The rise is frustratingly slow, but it's slow and steady.  My baseline is around 2.30.  I dropped to 1.01 and am now back to 1.5.  I have noticed a huge difference in my ability to work out with the increase.  I am actually working out at a decent non-embarrassing level.  It's not my normal level but I'm improving.  I still haven't figured out what actually caused all this, some more labs are in the works and I'm going to see a local (not my typical) pulmonologist in October.  (Yes, I COULD say the date but the chance of some of you managing to piss me off looking for updates is too great, so I'm not going to.  Annoying?  Controlling?  I know.)  If I had misgivings about seeing ANY local pulmonologist before I met my current doctor, I have almost no faith in this visit.  Seeing someone new when you are already sick is not ideal.  I'll put it this way, I'm not certain that I won't be canceling the appointment. 

I've never had to spend so much time doing treatments.  BUT I've also never felt such benefit either.  So the time spent (although inconvenient) does not seem like time wasted.  Although I haven't had to do many treatments in the past I do NOT consider myself uncompliant.  I've always done anything that I considered beneficial.  It is always going to be my treatments on my terms.  Crap.  All this sharing and openness is exhausting!  It is SO not ME!

Only fair....

Okay...  I'd better post a follow-up to my CF post...  After all, you've all been VURY good and not bugged me about it.  I'm a working out fool!  Three days of cardio and two of weights and although it's still hard, my pulmonary function has improved a smidge.  I don't actually notice the difference yet but my meter is giving me some good news for once.  The cardio class is a noisier class and therefore covers any inadvertent wheeze or cough... but the weights class is easier physically so I'm keeping up both.  I don't think that the antibiotics have done a whole lot so I'm going discuss a few more options with my doctor tomorrow....  maybe a little Pulmozyme, Inhaled Steroids and NSAIDs.  (Okay.  Okay.  Non-Steroidal Anti-Inflammatory)  (I'll make armchair doctor's out of you all yet....)

I have to say that I don't find any of this depressing.  Maybe because I feel ironically quite healthy (it only hurts when I breathe too much... hahahaha)  I am still doing all the things I like to do, although not at my usual speed.  I am actually more efficient in my day to day doings because I'm aware of not wanting to waste time and because it takes more energy to do things I'm damn well only going to have to do them ONCE!  I might be a little overdoing the baking...  I think I'm overcompensating -  God forbid anyone think I'm slacking.  Trent caught me "cleaning out" the trailer that we use to haul garbage to the dump...  All he said was "Seriously?" and then he went inside mumbling something.   (Hey!  What?  It was a mess and the boys didn't put any liners in the garbage cans.  Seriously!)

walking and talking

Truly, one of the most ANNOYING things about being short of breath is not being able to walk around while talking on the phone at the same time.  When I am on the phone, I am moving.  I get some of my best work done!  Some people sit and chat; I move around a LOT.  For the first time I don't have enough breath to do both comfortably.  It's very, very disconcerting.  The Ventolin is helping and the antibiotics should kick in tomorrow.  (Remember.....  well-wishers beware.....  just don't do it.)

I completed a successful trip to Costco today....and by successful I mean that all the goodies I bought have been secreted away in all kinds of sneaky and devious spots ensuring that that I can make them last more than three days.  It's certainly cheaper without the children but  I'm used to having my minions ready and waiting when I pull up.  It's no fun unloading the Costco loot by yourSELF.