Just breathe

I haven't updated in a grip (haha). I'm posting from my phone because my computer is in the shop getting worked on, which makes posting tedious, but I've got plenty of free time and I'm overdue for a health post.

Things are fucked up. I'm
In the hospital for the 3rd time in 6 months and my situation is not getting better.

In fact, I'm on 3L of O2. I came in this morning for my second bronch in 4 months and at intake I was satting 85%! I told the nurse that had to be wrong and so she got another pulse ox which read the same, and so they then put me on 1.5L to start, but that wasnt enough so I was on 4L during and after bronch and we've found anything under 3L allows me to desat. As an example, I'm in the ICU for a desensitization and I took the cannula off to go to the restroom and fell into the 70s! Not good.

So it looks like I might be staying on oxygen for a while. I'm a bit freaked out, without a doubt. I've lost a significant amount of lug function in the last 6 mo and now don't seem to be exchanging blood gases very easily. :(
I'm definitely not stoked.

And, the icing on the cake is that I don't seem to be a photogenic oxygen wearer. I've come pretty hot cystics in O2. I tried, but I just don't think I'll make the cut. Sigh.

Woe is me.

this is the end, beautiful friend, the end

Today has been a day of endings.

I finished up my last dose of IV Tobra about twenty minutes ago. This is the only time I have ever been on just one IV med and man, is that cake! I am also on inhaled colistin, so it's not like I am on only one med, but still, one infusion BID = sa-weet! So that's done.

That's not all as pie in the sky as I just made it sound, since this was an experiment to see if it would help me before I need to go in and get desensitized to meropenum. er, I guess it's Imipenum. Either way, I haven't heard much good about either med, so I am not really looking forward to that and honestly, I only feel maybe 70% better. I got a stomach virus in the middle of this course of meds that left me with a 102 fever, vomiting, and all together miserable. I feel that it set me a back a bit. Once the fever edged over 100, my heart started beating really hard and my breathing became very labored. I was acutely aware of this, much as I remember I was with H1N1. There is just a point where it seems that my body really begins to struggle with fevers. Maybe everyone's does, I just don't have a whole lot of experience with fevers.

I was thinking today as I was infusing my last med about where I am with my health. In 2007, I weighed 103 lbs and had an FEV1 of 50%. I did no treatments up until that point. Well, no, I guess I had my Vest, because I know I got that soon after my daughter was born. I remember because my boobs were full of milk and it hurt to Vest at first. But anyway, a year later, that's where I was. I feel it's entirely possible, had I not changed that road I was on, that I may not even be here today. Who knows where my health might have been and then to have suffered through the Swine Flu epidemic? yipes. I feel certain it was the grace of god and lungs that cooperated that that didn't hurt my body worse than it did, and I know I lost some lung function over that.

Anyway, I guess that's neither here nor there because I did get compliant and I am still here and I do have a baseline that now hovers around 70 and that is terrific. So I have to remind myself when I reeeaaaalllllyyyy don't want to do IV set #2, complete with some hospital time, that that's just how you have to play this game. If i want to be here for a while longer, I gotta play these cards right.

I really want to be here to see my kids grow up and have kids of their own. I was reading a book to my daughter tonight about a kid that got an ugly knitted sweater from his grandma and I felt deeply how much I want to share that part of life with my kids. It's a realy hard pill to swallow that I might not. Sometimes I can get kind of flippant and even obstinate about it when my family spouts off uber positive thoughts about how possible it is for me to live for a long time more. I feel they are deluding themselves and need to realize the stats are not in my favor. But the truth is, the deep dark truth, is I really would like to be around for a while longer. Facing your own mortality is not easy. I know I am still far enough removed from dying that it solidly remains a "what if" idea. Many people I know are already in end-stage lung disease and I am sure their outlook and wisdom would greatly differ from my own.

I'd come up from the basement earlier tonight when I realized I left the phone down stairs. I asked my son to bring it up to me.
"I'm too tired to come back down" I told him.
"From your thing?" he asked, pointing to my chest. I said yes, that sometimes what's meant to make us better can wear us down a bit first. He called back up the stairs that he hoped they would find a cure soon. This is my son. Somehow squashing my parents' optimism about a cure doesn't seem as unkind as doing it to my son. So I called back, "I don't know that there will ever be a cure, but hopefully they can find something to help me live a long time." By then though he was already immersed back into his Xbox game and I was feeling a little blue.

I digress.

Another ending came as I finished up teaching my 3rd semester in the world of higher learning. I had a failing student complain about me and my "unfair" grading policies to the Dean of my department. She called and asked me if I would be willing to let him take his final exam again. I really debated this. It seemed if I said no, the likelihood of my rehire was small, being an adjunct low on the totem pole. At the same time, I have been trying really hard to be more of a stick-to-my-guns kind of person. What it finally boiled down to was that though I thought that this kid was acting like a spoiled brat, he was entirely capable of doing the work. So to be punitive and fail him based on bureaucratic rules would really be a bit asinine and would probably keep a bright (but slightly annoying) kid from doing something positive with his life. So I let him retake it. It kind of botched up my evening since I had to go in just for that, but he did well and passed the class. So he's done, as am I, for the summer.

I really enjoy teaching at this level. It's pretty unlikely that I will ever go back to full time school teaching, but if I ever do, I am totally holding out to at least get a position in high school. Or even night school, GED. I mean, my dream was to be like "Dead Poet's Society" or something, but it seems I always get thrown in with the lower echelon of studetns, be it skill level or SES or what have you. No matter why, they've sort of become "my people" and I feel I do well by them. So I hope I can continue at this for a while longer.

Finally, in the end of days, I sent my entire master's thesis to my director today. That consisted of 63 pages of narrative and 15 pages of literary context. It took me almost a year to finish it, partly because that's how long it took me, and partly because I had no deadlines and I am working with a very over worked faculty memeber who wasn't always quick on returning my emails and drafts. I am still waiting for her reply, so I may have to edit and revise a bit more, but the bulk of the work is really truly done. Thank goodness! It's such a weight lifted off of me. I will actually get this degree. For a while there it seemed as if it might not happen.

With all that, I leave you with pictures. I just got a new computer and I have a built in camera (so yay! Skype!). I'm only about 10 years behind the rest of the world with my technology. I was just playing with the camera this morning and then again after I finished infusing my last dose of the Tobra.

Enjoy my kewpie looking pictures. (I'd rather be Kewpie looking than Ewok, thank you very much!)

'til the shadows and the lights were one

For your amusement, now that I can actually sort of laugh about the fiasco of my hospital encounter, I present to you before and after:



I took this after my first shot of dilaudid. It was IM in the buttocks - not so fun, but it worked quickly and i felt better. I thought, "oh ho ho, pain meds are working, won't it be fun to document this hospital stay in photos parce que c'est la vie cystique, n'est pas?" (sorry for my francophone friends if my French is bad. it's been une longue temps) However, I was pretty much incapiaitated with pain 45 minutes after this as the pain increased and the meds did less and less to help (or perhaps they would have helped if I wasn't waiting for hours between doses.) Here is a little secret: when something depresses my CNS, my left eye gets slightly smaller than the right. I have tons of pictures that show this and even brought it up to my eye doc who wanted me to see a neurologist. I declined, but now, every pic of me you see, you'll know if I was secretly hitting the hooch or taking granny's pain killers.



I took this about 6 hours later, after I was admitted and had my wonderful PCA pump. It was set on continuous dosing, which is why you see the button wrapped up. it only occurred to me after they took it away that I might have been able to hit that button for a little extra oomph. Oh well, it did it's job.

And that, mes amies, is a set of the ugliest pics of me you may ever see. I envy those of you who take such cute hospital pictures. I hope my next stay is planned so I can at least have a little lip gloss on hand, rather than the sweaty, dying cowboy took I was sporting.

high hats and arrow collars, white spats and lots of dollars

MY friend Lo turns 33 this week and we celebrated last night. Lo is one of few who is down with the CF thang, and sicne I know she reads this blog, I thought I'd give her a B-day shout out!





I got more to say about lots of stuff. But now is not the time.

tying off the dinosaur

So, a PICC in my left arm, as handy as it would be, is a fail. 4 attempts before I folded:



Right arm a go, on the first try:



Post PICC calm:



Left arm, eight hours later:



Apparently I am very senstive to PICCs and have unfriendly veins. Super.

and, zosyn is every 4 (*see below) hours. lovely. Dare I say, besides my aching arms that I think I feel better today?

oops, I lied. After rereading a comment, I realized my typo. The zosyn is every 6 hours. not 4. Just a PICCed brain speaking, I guess

it's outrageous and insane them crazy prices in Port-o-Spain

Some pictures, because everyone loves pictures, right? These were old picutres on my brother's (badass) camera that he took 4eva' to send me.

Just some images of those I love.

First, I just wanted to show me in June and me in December so that the progression of my fatness would be evident (as it is to me).


June - thin


December - la gorda


my manchild, in constant need of a haircut (which is a constant battle - I don't mind long hair, but I do like neat hair - not to imply I think the child has long hair, just fro hair)


my baby - she doesn't even look like this anymore


my dad, stepmom, and bros


my son and his Christmas dirt bike


My bro and his niece


if you look like a fat pig you should act like one, too


This is my CA bro and his fiancee (he is the surfer)


This is my NYC bro and his wife (he is the artiste)

There you have it. Ma famile. Ther are no pics of my mom because she usually does not take good ones and would be mad if I posted an ugly one. I don't know why my husband or step son did not make this cut, but oh well - oh, actually they are up in the dirt bike pic.