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!)

it's easy

My lungs are finally running pretty clear streams whilst vesting, sweet. I have a cold and my one ear feels like I might have gone deaf in it, but my mood is OK.

I think that I really need to be grateful for where I am - I am home, I am relatvely healthy. H1N1 is eating the CF community up, so I really need to appreciate where I am and what I have. I keep fearing that this illness will have been the turning point in my health, but I guess, if it is, it is. I can't be too picky when it could have been so much worse...people are vented and dying from this horrid thing, Cfers and nonmutated folk alike, and I made it out, not unscathed, but OK. I have to send out prayers to everyone who is battling this thing (hell, prayers for everyone all around).

The home nurse is coming today to do a dressing change on my PICC. She sounded like a twit on the phone, and you know how I feel about pedantic twit nurses. I know there are come Cfers out there who are nurses...I know there are good nurses. This might be an excellent nurse with bad phone manners. I think Cfers need to try to rule the world, honestly. Then, everywhere we go, people will "get it" and not be so effing annoying.

ah, but I must keep love in my heart.

Twice in the last week I have seen my husband extract locked-in keys from our cars. Small things like that are so sexy. He is back on my good side (for now) having been trying to care for me. Love. Love is all you need.

rock me amadeus

Thanks for the replies to the below post, please, keep them coming, there have been some really terrific ideas brought to my attention that I had not thought of. I want to address this more soon. However, there are 2 minutes of vest time and then I am out the door to get PICCed - baH humbug. But it needs to be done. buh bye H1N1 residual bullshit, c-ya later.

doctor docgtor gimme the news I got a bad case of lovin' you

So I got into the Fort Wayne clinic, but not until December. They could get me in earlier, but their clinic is one Wednesdays, and I am babysitting for an infant Monday, Wed, and Thurs, so that kinda botches things up. I figured if I tell her mom now about December that gives her plenty of time to find someone else that day.

The coordinator told me they only currently follow 12 adults in the clinic. This is both good and bad as far as I am concerned. Good in that there is not an overwhelming amount of people clamoring to be seen, but bad in that they only have clinic once a month and the doc is a hostpital internist (or something like that) and so he is accessible, but not always because he if often on call at the hospital. We discussed that 90% of the time I know what I need and won't require being seen, besides routine visits, but just as well, if I am sick and NEED to be seen, will that happen? It sounds like yes, they make amends for that. I am not going to burn my bridges here in town, so I set my appointment for now as simply a second opinion.

Meanwhile, on the H1N1 front. I saw a new GP. I am really pissed with my clinic right now, though I know inevitabley I will need to see them. I just wanted someone to listen to my chest, check my sats, that kind of thing. The GP thought all sounded clear and my sats were 97, so while I don't know what my PFTS are (I suspect they have fallen considerably, to be honest, things sounded OK. I got a chest xray also. I suggested prednisone and the GP agreed, though she wanted to wait and see what the xray showed (which I'm sure will show what it always does, mild restriction, most damamge to upper lobes)...so I figure if the GP doesn't get the report today I can call the clinic and they will surely rx me the steroids. I feel inflammed, if one can feel such a thing.

But being SOB is a really new thing for me, I mean last night I had to stop at the library between flights of stairs to catch my breath and I sound like a freakin locomotive coming, huffing and puffing, so all is not well. I think IVS are inevitable - something I already knew, was even ready to do...but don't want to.

so c'est la vie cystique.

wouldn't it be a real drag if we were all the same

I called today to the Fort Wayne Cf clinic and left a message. The coordinator for adult care was out, be back manana. I felt excited when the answering message said, "If you need to speak to Dr. J, call her at 2345678." This is exactly what I want: an accessible doctor. Something is wrong with my lungs. I am not congested, not anymore than usual CF, but I am short of breath and I am coughing a ton - I would almost venture to say bronchitis or maybe just serious inflammation. I know H1N1 is a respiratory flu, and my husband is still hacking away horribley (in fact, this morning and the other night both I was thinking in my head, "I wish he'd shut up" when he kept coughing - made me feel bad for him, living with me!) So maybe it is just taking forever to get over. I dunno. I am on levaquin, so I hope that is holding off any other major infection from setting in...but my point is, I should have been able to be seen by my doc, not told by the NP, "well, we can do an xray, but it won't make any difference how we treat you." Well, fine. I don't want an x-ray anyway, but this is not just a Cf exacerbation, this is repiratory influenza and maybe I need something different than usual Cf crap? I don't know, I AM NOT THE DOCTOR (but should have listened ot my dad and become one, sheesh), and i don't want to have to play doc to myself all the time; sometimes I want someone to care enough about me and my health to at least want me to come in and be seen. Unrealistic??

So some people are posting a little Q and A on their blogs, which I thought might be fun to do, as who doesn't like to wax poetic in their personal internet space? So I leave the Q and A open to questions, which I will answer. Ask me anything, not much is too personal for me to give some answer to. I will respond on Friday, Oct. 23rd to any inquiries (this reminds me of my dad, who loves to talk, telling my brother's friends, "Now is the time you can ask me anything you wan tto know about," and me thinking: please God, don't ask him anything, I am so tired of hearing him talk!)

I called the witch doctor he told me what to do

I have to say that all this H1N1 buuullshit is making me quite nostalgic for my good health. I guess we all need that kick in the ass reminder every now and then not to take things like health for granted. I got a little paranoid this morning, morning 6 with a fever over 100, about not making it through the great flu epidemic of 2009. How long can a body have a fever before all the organs cook up? Alas, here I am vesting and nebbing and typing, sans advil or hydrocodone (how I love thee), and while my head feels slightly cracked by a ginsu knife and I have to turn my entire body to look right or left lest my eyeballs send searing pain into my dome, I am in decent spirits.

Onto Piper's blogger challenge.

1) What are your thoughts on "alternative" forms of medicine?

2) Have you personally ever tried any of techniques to manage your CF (or your child's) other than the typically prescribed routine? If so, what did you think of them? Are you still doing them?

3) What does "healing" mean to you in the context of cystic fibrosis.

4) Anything else you want to say on this topic.

1) I believe in alternative medicine to a point. There is a lot of wisdom in using nature to heal - I believe in a healthy diet, I believe (and have used) acupuncture, I believe in exercize, I believe in aromatherapy and essential oils (sorta, there is some proof that oils absorb into the skin and help, but I'm not using oils instead of meds anytime soon)- I don't believe in crystals or random chinese herb concoctions sold on the street corner or reiki. My dad was always a big proponent of diet and exercize and herbs - but not at the sake of modern medicine, in conjunction with. And while I know that diet and exercize aren't really "alternative" it is surprizing how many people don't look to those FIRST when trying to heal. I don't think we should blindly believe in any one mode of treatment. I think people should constantly question, search, try new things, but we don't need to reinvent the wheel either.

2) Exercize was alwasy my saving grace with Cf and I will spout off about it until the cows come home. My parents putting me in competitive swimming as a kid was the best thing they ever could have done for me. I did no other treatmetns as a kid, aside from enzymes. I don't exercize now like I should, partly due to my own laziness, partly due just trying to find the time. I have used herbs in conjunction with my Cf, but never saw any great improvement. Right now, I am all Western meds.

3) For me, healing with CF means not getting any sicker. It means rebounding from illness. Not feeling pain, not being uncomfortable, emotionally or physically, with the disease.

If you have your own blog, answer one or some or all of these questions there, and then post here to let everyone know to check it out. Or else just answer the questions in the comment field.

makin' bacon

We have H1N1. Fo' shizzle. I have been soooo sick for 5 days now, serious misery. I went to medpoint Monday and their quick culture came back negative for both strains of flu. My husband went to his family doctor and had the same result. But today his doc called back and said yep, you grew out H1N1. Lovely. So I assume my culture is the same, though Medpoint has not called. My son already has been sick and done with this - he is the one who brought it home and so far, the baby has not had anything (knock on wood). I have not had the flu since I was 14, so this has knocked me on my patootie. I am living on advil. I am behind on my class work. bah humbug. Hurts my eyes to mve too much, I feel like I am telling people I have the bubonic plague.