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.
Sunday, October 25, 2009
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 anyway...my 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.
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 anyway...my 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)...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.
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.
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.
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.
Wednesday, September 30, 2009
love love me do, you know I love you
I know, I know, I have been a blogger terrible. But we moved, and I have this killer class this semester, and I did an art show that had me crocheting until my fingerrs were raw, and I've just been busy.
So I finally get a breath tonight. I have a midterm paper due tomorrow that if I read it one more time I might puke, so I decided to play internet.
I have ben getting all my ducks aligned for my master's thesis which I will be starting to write in earnest in December. I have decided to use Cf as part of the dealio. I don't know why, some sort of masochistic impulse, I think. But I am doing a memoir, basically, and I mean, really, what kind of memoir does a CFer write that leaves out the Cf part (the kind I would have written five years ago, maybe). I am a little nervous and a little excited about it. I am excited to have a creative focus, I tend to lose sight of things without cemented goals, so this will keep me busy.
In health news, I had a bone density scan today and I vist an allergist next week and I think I am going to do a prophylactic round of IVs soon since I have met my deductible for the year. I really don't want to, but I can't hlep but think if it holds things off another year or two like it did the last time, then I am in good shape. We'll see. Ivs and this class might be more than I can handle.
My boy has been having a hard time in school this year and I am close to taking out a few 4th grade teachers. I have been in contact with the principal and I am working on getting him a 504 - so you know, they can stop taking away his 15 minutes of recess and making him write lines instead (who on earth thinks this is a good idea or even an adequate punishment - did these people study ANY of the same education sources I did? and has anyone even heard of Alfie Kohn???) SO that has taken up a lot of my mental capacity each day. Rue being a mom.
So anyway, hello CF friends, and whatever other random people read this blog - I know you're out there, I see you make return visits, but who are you??? Reveal yourselves.
I love you all!
So I finally get a breath tonight. I have a midterm paper due tomorrow that if I read it one more time I might puke, so I decided to play internet.
I have ben getting all my ducks aligned for my master's thesis which I will be starting to write in earnest in December. I have decided to use Cf as part of the dealio. I don't know why, some sort of masochistic impulse, I think. But I am doing a memoir, basically, and I mean, really, what kind of memoir does a CFer write that leaves out the Cf part (the kind I would have written five years ago, maybe). I am a little nervous and a little excited about it. I am excited to have a creative focus, I tend to lose sight of things without cemented goals, so this will keep me busy.
In health news, I had a bone density scan today and I vist an allergist next week and I think I am going to do a prophylactic round of IVs soon since I have met my deductible for the year. I really don't want to, but I can't hlep but think if it holds things off another year or two like it did the last time, then I am in good shape. We'll see. Ivs and this class might be more than I can handle.
My boy has been having a hard time in school this year and I am close to taking out a few 4th grade teachers. I have been in contact with the principal and I am working on getting him a 504 - so you know, they can stop taking away his 15 minutes of recess and making him write lines instead (who on earth thinks this is a good idea or even an adequate punishment - did these people study ANY of the same education sources I did? and has anyone even heard of Alfie Kohn???) SO that has taken up a lot of my mental capacity each day. Rue being a mom.
So anyway, hello CF friends, and whatever other random people read this blog - I know you're out there, I see you make return visits, but who are you??? Reveal yourselves.
I love you all!
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