Friday, October 30, 2009

baby, roll with the punches - even if the end is not in sight

The good:

My husband got up and did my 5 am infusion for me. He says he will do it the rest of the time. This means I have to get up just once, at 6 to disconnect and infuse the second med and then can doze until my alarm at 7. What a difference not getting up made - I still woke up when he did it, but I didn't have to move an inch. It made me feel loved.

The bad:

I am still a little SOB and my energy level is pretty low and so I feel I am getting behind, especially with my school work. This is my last class before I write my master's thesis, so I really want to be done and have it go easily. I am feelinga bit stressed.

The ugly:

I seem to have caught a cold/virus on top of everything else. My throat is on fire, very very red. Pretty doubtful it is bacterial with the meds I am on sucking every inch of bacteria out of my system (just ask my colon), so it must be viral. Please body, fight back!

So, still on a teeter totter here, but I keep hopeful. There must be an end in sight? right? please!

Thursday, October 29, 2009

I thought it was a bird but it was just a paper bag

I want to try to be postive and uncomplaining as I write this post. But the thing is I am exhausted and I have some seriously upset bowels, and I can't sleep (med induced insomnia??) and I have been ignoring my kids and I am tired and I don't see how this is suppossed to make me get better, my throat hurts, I am coughing up a ton, look like a greasy spoon, and the little one has a fever (her turn with H1N1?) to make lemonade out of that pile of rotten citrus fruit?

5 good things for today:

1) Only 7 more days to go
2) we've financially caught up from my husband's weel long non-paid H1N1 work vacation
3) some solicitor today told me that I didn't look old enough to be the home owner and the guy with the infusion pharmacy said I looked too little to weigh what i do (which I guess was a compliment)
4) special hot cocoa!
5) October is almost over, November can't be any worse, can it?

OK, number 5 was cheating, but serioulsy I am so ready to move on from this month - as if the changing of the month will change anything, but it is symbolic, yes?

Since I have been sick I have been pretty holed up inside and so I have spent far too much time on the internets. But today I was watching some of the vidoes at, and I was really struck by this shared experience we all have. Just listening to people's voices, watching them just kind of hit me (as things do from time to time) how important my CF community has become to for that, I add my 6th gratitude of the all. Much love, all of you.

Wednesday, October 28, 2009

go back jack and do it again

edited 10-28-09 - 9:22pm whilst awaiting infusion

I have the time to address some of the topics that came up from the hubsand post.

But first, I shall toot my own horn. This morning I: infused two meds, vested, nebulized, fed aand changed a baby, dressed a toddler in a fairy costume (and got her to brush her hair), went to the grocery store with both children, put awat groceries and started laundry. woot.

No one better call me lazy. I do think I feel better though. I am still a bit SOB, but my energy (minus my lack of sleep, which will hit soon, I'm sure) seems a bit higher. Maybe it is mental, maybe it is just the need to get things accomplished, maybe it is the abx...who knows.

On to matrimony:

I showed my husband all the comments yesterday(I think there are like 17 of them! so cool!) and asked him to read them. His gracious reply was, "I don't feel like getting on the computer right now." humph. Seriously though, your comments brought a few issues to light for me.

1)The lack of interest, whether it be from fear or ignorance or what have you, makes me feel unloved and unimportant. I can't seem to get him to get that, but I need to recognize it and I need him to recognize it too.

2) Compassion and understanding are not the same. I have long thought my husband lacked compassion. Chalk it up to his upbringing. That is not the same as not understainding. I can expect him to educate himself and to try to understand the dymanics of CF, but I can't expect him to truly be able to put himself on my shoes. Right now he is failing at both a bit, but we can work on the one, the other not so much.

3) My husband takes care of me in a physical sense. He got up at 5 to help with my first infusion, he changes the oil in my car, he does laundry if I ask, takes care of the house (outside and mr-fix-it stuff, mainly)....emotionally, he is not as strong. He doesn't know what to do when I cry, doesn't know how to handle when I try to explain my expectations for him emotionally, and honestly, has no idea how to handle the emotional (or physical) demands of CF.

4) My husband DOES think I complain a lot. But the thing is, he and I have different definitions of complaining. I think complaining is sending your soup back because it doesn't have enough cheese on it, or whining about weather and things you have no control over. I don't think complaining is saying, "I have so much to do tomorrow, I have to do a and b and c and by d and f for ghij and k." So that ne we might be at a standstill...

5) It is Ok to be tired and to take time for myself to do what I need to do with CF. With or without a husband, I will have CF, and for that my health has to be first. I want to be here for my kids and my husband and family, and I can only do that by taking care of me, even if I have to do it alone.

6) Another comment came in today while I was having my PICC fixed (see below) with reagrds to my husband's diabetes. I do take the time to inform myself on diabetes, to a point. I read a book about it when we first met and he started insulin (he is type 1 but was misdiagnosed as type II in the Navy). I share any new info I learn about it (though it usually comes from CFRDers, still, diabetes, diabetes), I make his lab appointments and doc appointments - so yeah, I am involved. I have not joined a diabetes support group or website or anything like we cystics have, but I know more about diabetes than I think he knows about CF. Part of this is just because we are not created the same. I was brought up reading and asking questions, he was not. I have to learn eveyrthing I can about a new thing, while he is content with just knowing what he needs to know or what "authorites" tell him. I don't think one way is necesarily better than the other and certainly I waited years to allow myself to learn details about CF, my own disease! but it is a different way of coping, and as with the aforementioned physical/emotional divide, this is another way we are soooo different.

BAH. I have to go back to infusion. something is wrong with this PICC. I can ~feel~ it in my body, if that sounds wierd, I know, but there is pressure in my chest and my heart keeps beating really hard. so much for easy.

PICC fixed. I hope.

Tuesday, October 27, 2009

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

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.

Sunday, October 25, 2009

I can't get no satisfaction

Dearest readers,

Now is my turn for Q and A. As many of you know, I struggle with my husband understanding CF - and trying to get him involved. He won't go to websites, he doesn't read this blog. So I ask you now, please, post an answer to my question. I might copy and paste some of the answers into an email to my husband, so you don't have to write directly to me, but rather just pontificate on the subject :) (pontificate is a good word, no?)

So, what is the one main thing you would want or expect someone who loves you to know or understand about CF...what do you think or wish people would "get" about this disease. If you read and don't have Cf, maybe what is the one thing you wish you could know or understand about CF?

Honestly friends, I am at my wits end with feeling that I get no compassion around here, so your answers might be able to shed light in ways that I can't.

Friday, October 23, 2009

we pray and we pray and we pray every day

well, the prednisone has hit. sometimes this stuff makes me kind of maniacal. I want to talk talk talk and eat eat eat. I keep thinking it is all in my head and that there is no way I could feel it so quickly, but I do. I have lost almost 20lbs since June and I think I just ate like 12 pieces of pizza, I'll probably gain it all back in the next week. boo to that. Anyway, my xray was "normal" so I am on the pred and hopefully that will solve my issues. I actually recorded myself breathing after I walked up the basement stairs today, but I can't get it to post, sounds like darth vadar.

Anyway, I said I would post my Q and A thing today. Only one persn had a pregunta, which made me feel a bit audacious to have even proposed such a thing, but Q and A:

What percentage of each do you feel:

1. scared of the future, versus
2. grateful for what you have, versus
3. excited when you wake up in the mornings?

Is it 10%, 60%, 30%, or ......?

So, I tend to lay in bed at night and worry about the future - I worry about my kids (in general) I worry about not seeing them (as in early Cf death), I worry about my husband and my marriage - I worry a lot at night. Seeing this is mostly a nightly occurance, I'd day it probably equals about 5% of my weekly time.

I try to be grateful for what I have and give thanks just as much as I worry. I tend to say little prayers throughout the day, like, "please let my son have a good day and school" or "thank you for bringing my husband home safe," that kind of thing.
so again, I'd say maybe that equals, really, like another 5% of my time

I am rarely excited in the morning. I am not a real peppy positive kind of person, so unless I have something really special going on, excited is not how I start out my day. So that would be like 0.01% of the time.

When I stop to think about it, I guess most of my waking time is spent being busy, taking care of house and kids and school, so I thankfully don't have too much time to ruminate on my fears, but in the same token, not enough time is spent giving thanks for what I do have, either.

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) 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.

Monday, October 19, 2009

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!)

Thursday, October 15, 2009

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.

Wednesday, October 14, 2009

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.