I'm hoping for a sign, pray that I'm anything but fine

They say ("they" being my grandma's friends...as in "they say" you shouldn't do this or "they say" you should always do that). So, "they" say there are 7 stages to grief.

Once I realized that grief was as good an explanation of any for what was happening to me, I started to actually pay attention to what was happening. Being academic and somewhat of a nerd can be helpful when you're so caught up in the hornet's nest in your head and car wreck of your heart that you need a moment to regroup. You do that by being a nerd. You read books on your situation and take notes; you dog ear pages and refer back to other books you've read for a totally unrelated reason. In this research for maning, I came to grief. I was trying to explain to someone that my emotion was coming in waves: sorrow, anger, fear. Each were erupting, sometimes without notice, and often overlapping one another; the push and pull of the emotions playing like the tide on my already damaged heart.

The epiphany of grief lit up as I remembered quoting Joan Didion from her book The Year of Magical Thinking in my thesis (close to being done, but quite railroaded by recent events) as she described the waves her grief came in following the death of her husband.

I realized that in a way, I have suffered a death. The death of all I believed was true up until Jan. 14th 2011. Life now comes in two stages: before and after. If I look at pictures I have to think: was that before, or after? Songs, letters, cards - any memnto, any memory or keepsake all get sorted into those same before and after piles. And from after until now, that was the death. There is no truth in that pile. It's void. It's a mirage, it's shit. So the new pile, the one starting January 15th is the rebirth pile. That's the reincarnation of all that was the before pile. and there isn't much there yet in that new category, a few crumbs maybe, and even those keep getting swept away when the tide rolls in.

Back to grief.

Seven stages:
1) shock and denial
2)Pain and guilt
3)anger and bargaining
4)depression, reflection, loneliness
5)The upward turn
6)Reconstruction and working through
7)acceptance and hope

So of course these stages aren't worked through in the order they are necessarily represented here, and they can overlap; some may last longer than others. I am not even sure that I believed in this kind of thing until I was mired in the muck of it. But here I am, and I am desperately trying to reach toward the final idea of hope. Acceptance too, I suppose.

Denial, that came first. That's been a way of life, we know this by now. But denial lasted all the way up until the proof was being smashed into my face like one does with a dog that shits in the house (we don't do that to our new puppy, btw). The shock was immediate. It was an actual physical response. Cold, shaking, unclear thinking. I still think I am in shock. Sometimes when I think about all that has happened, I find my heart beating fast and I feel I might hypervenilate.

The pain was also immediate and it's an ache to the core like nothing I have ever known save for the death of a loved one. I wrote about this as well when I was writing my personal piece for my thesis and I likened it to a cast iron skillet being wedged into my chest.

I wondered over and over, what had I done? Was this my fault? What could I have done better, different? If only I had done this or that this way or that way. I still wonder. I wonder if I am handling things now the way I should. Nothing I do feels right.

Anger. Punching biting kicking scrathing yelling seething spitting cussing despising hating hurting destroying broken finger broken heart broken promises broken life

Despression, relfection, lonliness. I have been in this stage for long before before and after started. I see now with more clarity why I was feeling depressed. A long cycle of things that started when after started. I have always been a bit lonley. I kind of like it that way. Reflection is a daily occuracne for me. The only difference is now my daily activites are interrupted by reflection in a way that isn' very productive. One minute I am shoveling out from three feet of snow, the next I am lost in thought and sent spiraling back through the previous three stages to the point i feel I am back at the startting place all over again.

The upward turn. Every day is an upward turn. Despite all the downward spiraling, the reeling back, the constant feeling like I am a hanster on a wheel spinning and apinning and getting no where, everyday that we're still here, every hour longer I go than I've gone before without completely losing it, those all feel like upward turns. I am still waiting for some moment when I truly feel some kind of "I see the light!" clarity. It's still very very dark here.

Reconstruction and working through is happening as I type and is all integrated into the upward turn. It's slow like molasses, but I pray to god just as sweet.

Acceptance and hope. This one seems the hardest. Not the hope, but the accpetance. Not only of what has happened but of my role in it as well. Because nothing is my fault. But something has to reflect my responsibility to the life both before and after and up until the rebrith, and then including that as well. I didn't make the choices that were made, but I was there when the making was being done. I have to accept that I wasn't there as fully present as I should have been (unless this train of thought means i need to go back to pain and guilt?) oy.

So, there it is. My journey. I never liked the journey metaphor for my life with CF, and I like it even less for my new life reincarnate. But I'm not sure what other idea works for this except to say that I'm there at that fork in the road, the road less traveled, the road not taken. My prayers are raw and deep and yearning. I'm begging for a sign, for the knowledge that I have indeed opted to follow the right road.

made lots of money, how much I don't know

My husband is a big Lynyrd Skynyrd fan. We've seen them twice, it's a good show. Anyway, over at cf2chat, Amy linked a youtube video of Rickey Medlocke on some show.

I was caught by how he talked about how not many people knew he had CF, and how he had a "low grade form." And I thought: Well, there I am in my rock star self, so for some odd reason I had the urge to contact Mr. Medlocke.

I found his agent info, I have no idea if it is legit, and I directed Rickey Medlocke to Cf2chat as well as here. Pretty ambitious of me, wouldn't you say (and maybe a bit cheesey)?

So, ~wave~ if you're reading this Rickey Medlocke, Welcome, Cyster to Fibro (sorry Piper, but I had to steal that!). Ha. :)

I leave you with my favortie Skynryd song:


Can't go wrong with the piano.

so to all you kids all across the land, take it from me, parents just don't understand

Last night while I was nebbing I thought I had some hemo. Turns out, it was just the old sinus cavity.

Some times it is still hard - as proactive and aware as I try to be - to grasp how Cf could affect me...will probably affect me in the future. I know I talk about this a lot, but I grapple with it often. Sort of this fear/denial thing. I gues it's true with anything - smokers who don't quit because they feel fine, people with high cholesterol who still eat brats and cheeseburgers all the time - gotta have a heart attack to "get it." But I don't want that to be me, so I try very hard to listen and learn from others who have progressed farther with this disease, but still, that little piece of me insists it "won't be me."

The other day my husband was talking about my son and he said, "when he is in his twenties and you're dead and gone..." and I was like SAY WHAT? I got really pissed off about it. I mean, my son will be ten this year, and I'd like to think I have a few good years left in me. It made me wonder though, I complain that my husband doesn't really understand or care to learn about Cf all that much, so what exactly he is thinking?! (too bad he can't good life insurance on me - ha!) (and, in his defense, his mom died when he was 21 and he said he was just thinking about his own situation when he spoke, which is probably true, but still, what a foot in the mouth!)

Finally. Parents. I decided to back out of discussions on the forum, but i wanted to talk about what I think about CF parents. I have two of them, you know. and they did for me the best they could.

As a kid though, i really did not want them involved in my CF care. In fact, at age 12 I stopped letting my mother come in with me on clinic appointments and by 16 she stopped coming with me at all. I know she did not know how to handle Cf, but I appreciate that she trusted in me to take care of myself. Despite some major deviations from that path (may my mother never know!), I think I've done OK.

Still. I think CF parents are a wonderful resource, a caring group of individuals, certainly our adovocates and biggest fundraisers....but, as with any other life experience, no matter how they love us, they CAN NOT KNOW LIFE WITH CF AS WE DO. This doesn't reduce their experience as paretns or their role in the CF culture, it only separates parents and patients. This is not a bad thing. I would rather be a CFer than a Cf parent any day, as I know the way I feel for my kids, and I would never want to see thenm suffer with a disease such as this.

Nevertheless, it irks me that my mom or someone else's mom or dad or sibling or whatever, would ever dare to insinuate that they can know life with this disease or even begin to feel my pain. My uncle stated it beautifully (he has Cf and is 13 years post TX) when he was in town over Thanksgiving and told my mother, "You don't hurt for her CF the way she does." So true. Yes, I feel pain when my children are hurt, but their experience is not my own. My mother feels guilty I have Cf, she feels sad my life might be shortened, she worries when I am sick...but Cf is mine and mine alone. I appreciate that she tries to understand that.

you're an obsession, you're my obsession

I have a lot of time to think while I swim in the morning.

So here are some thoughts:

1) There is a guy who swims who has no legs below the knees. He's pretty fast. I admire his upper body strength. I was thinking we could make a crip swim team. We'd be pretty good, too.

2) I think my last post might have made it sound like I am unhappy with my life now. I'm not. I've taken quite well to domestication. And it was the saving grace for my health. But it is a different life than the one I lived as a single gal. Both have their merits, though honeslty I would pick this life over the former anytime. And they are not nec. mutually exclusive, I certainly have a lot of hold overs from that time - I am still the same person, just a little softer, a little slower, a lot more aware.

3) Someone asked abut denial in my family and I thought I would explore that, too. When I say I was in denial I mean simply that while I knew I had CF, I lived as if I didn't. I wasn't overly symptomatic (though with PFTS just in the 50s and 60s, I certainly was symptomaitc, I just didn't know what it felt like to feel good) and I chose not to go to clinic - once it was my choice (except the once a year obligatory visit to get rx refills) and I just pretty much ignored CF. I coughed. a lot. But I just didn't let it stop me. I honestly felt like my Cf was different than anyone elses. This, I think, is old news.

I don't know quite where this came from though. I mentioned before that my mother's side of the family is very steeped in ignoring things (as I said, my uncle didn't even know he had CF until 3rd grade when his teacher told him). They also were known to hide unwanted pregnancies, etc. So it is a don't see it , don't talk about it mentality. I don't remember my mother ever acting this way outright about my CF. She certainly did everything the doctors told her to - but she also very much let me be in charge of my care.

I look at my PFTS from age 11 - 46% and sats at 89 and I think, why the hell did no one put me on IVS? The answer is threefold: I don't think home IVs were as available then, I would have thrown a fit at having to go to the hospital, and my mother had to work, so if orals were sufficient, that was easiest for her. But really, an 11 year old probably should not have been allowed such say in the matter (though further I wonder why the docs didn't push it?). I recall as well (maybe around this same time?) having a pharmaceutical rep bring a (HUGE) nebulizer to the house. I flat out told the rep and my mom that I would not ever use that thing - and I didn't. And no one ever made me.

So I guess my denail came in some ways from the fact that my mother was content to let me lead the CF way and I wanted CF to be sort of an ugly secret. She didn't make it that way, but she certainly didn't make it otherwise.

My dad was different. He was very much determined to keep me healthy. His tactics were through exercize. Once I was strong enough to make CPT a chore - fighting, running, screaming, hiding, refusing, etc. my dad put me on a swim team. A serious swim team. And I credit that move 100% for keeping me healthy. In the off time, we had to go for family runs (horrendously embarrassing occasions that often looked like this: my two brothers and sister jogging along ahead of the crew while my dad, often called "Hulk Hogan" or "Chuck Norris" fell behind either literally pulling me along beside him or swatting me in the back of the legs with a switch to keep me moving).

The swimming seemed to do the trick, however, and I wasn't sick very often. My PFTS have always been pretty low and I recall doctors telling my paretns that they weren't too indicative of my helth as they didn't seem to represent how I was doing overall. Maybe this is true, maybe it isn't. But what happened is I just became labeled "mild." Everyone considered my Cf to be mild and so did I. To me, mild = no big deal. So it was no big deal.

My mom didn't really talk about my Cf, but my dad did all the time. Embarrasingly so sometimes. He would call me in college and remind me to work out, to be a "Physical fitness fanatic." I did aerobics and stayed fit in college - until i moved away with a boy - which is when things really took a dive. (Life in the fast lane, surley make you lose your mind).

When I met my husband, who is diabetic, I rmember complaining to my dad that he just wasn't talking adequate care of himself and my dad looked at me and said, "Frustrating, isn't it?" and I knew exactly what he meant.

4) I don't thnk too many paretns of Cfers read this, but, my final swimming thought was that I truly believe that serious exercize is the key. Not piddley once a week swim lessons at the Y but hard core olympic grade exercize. I realize not everyone can handle this, though it would seem the earlier you start, the better, but I can only believe that years of swimming - as a child 3x a week, as a teen twice a day for four months (then off the rest fo the year - with intermittiant track or summer swimming thrown in) was a big part of the puzzle in how Cf affected (or didn't) my body.

Just the two of us, we can make it if we try

I've been thinking a lot about the whole denial thing and what it means with regards to other aspects of my life.

In a lot of ways I think denial served me well. I never lived life focused on CF, I never used it as a tool or an excuse. I sometimes think I am lucky that I treated my CF as I did because I am still susceptible to almost all abx, my veins are healthy, I haven't been overly radiated, etc. Coming to terms with things in my late twenties was the right time for me. Luckily my health didn't really suffer for it. Yes, maybe I'd have PFTs in the 90s instead of the 70s had I been more aggressive, but who knows.

Yet now that I am trying to take a more proactive stance I see the benfit of aggression and focus. I'll never get back the lung function I've lost, and perhaps I didn't need to lose it if I'd done proper care and treatment. It is with gusto that I want to hang on to the 73% I've got left. I've come to understand that CF treatment is a large part prophylactic rather than reactionary.

While I was swimming yesterday morning I started to think about my son. Now that my daughter is 2 and talking and communicating up a storm I realize how delayed my son was in his lnaguage development.

When he was 10 days old, my boy was hospitalized with an infection in his scrotum. It was very wierd and no one was sure where it came from or how it got there. He had a surgery to drain the infection, but after a few days he began spiking a fever and we were sent to Riley Children's hospital. After a week, my baby was finally diagnosed with bacterial meningitis. The theory, though no one really knows, is that his bowel perforated slighlty at birth and leaked bacteria into his scrotum. His bowel sealed itself off leaving a sac of bacterial puss in his scrotal sac, but when the urologist cut into the scrotum he unwittingly spread the e.coli into the bloodstream and then, because doctors were understandably looking at the wrong things (bowl issues, structural deformities), by the time infectious disease team was called in to do a spinal, the bacteris had spread into the spinal fluid.

At the hairiest of moments, the infection was causing a small legion in his brain. Neurologists told me that if the infceted part of the brain did not begin to resolve quickly they would have to cut a hole in his skull to drain the fluid and pressure. Thankfully, Gentimycin and Vancomycin worked like charms and we were able to forego any neurosurgery.

After we retunred home, my mother and a perdiatric neurologist friend of hers hounded me over and over to get a battery of tests done to assess if there was any permanent brain damage done to my son so we would know what we were facing.

I declined. Over and over. My reasoning: I didn't want him to have a crutch. I figured that if I never knew any different I would assume that he was a normal boy and would never try to compensate for some delay or problem. Much the same way I dealt with CF.

Now, at 31, and raising my second child with some small amount of experience, I see the gaping problem with my decision. Much in the same way I wonder "what if" with CF, I look at my son.

He struggles with writing, with attnetion, with language (all related to the left occipital lobe where his infection was). He gets in trouble at home and at school for not listening. SOmetimes he seems like such an unhappy boy. So I sit and wonder with the guilt only known by other moms if I did him wrong by not finding out what his limitations might be. What if I might have known he'd have trouble with language and had worked with him since infancy? Where might he be now? Maybe not suffering to write a short story in the third gtrade or constantly barraged with, "You just don't listen!"

I can see how denial benefitted me, but I'm beginning ot think that it just is not the right way to live life. I still like to turn a blind eye to my problems, and it is a trait very much passed down by my mother's side of the family.

My son, a beautiful and sad little soul, reminds me so much of myself. It breask my heart that I might have done more damage than good.

When my son was sick my mother asked the doctors if he was going to live. (I mean, she actually said, "Doctor, is he going to live?"). I was so angry with her. Why question that sort of thing? Of course he was going to live! I never had a doubt in my mind. Perhaps the denial of realizing just how sick he was is what got me through those dark weeks. I think even if the doctors had said no, he would not life, I would not have believed them. Not any more than I believed the CF docs who told me (and my mom, when she asked them the same question she'd inquired about my son)I might only live to see 18.

It's a fine line, this denial. I'm not sure it is always the wrong choice, though certainly the one that leaves the most uncertainty in its quake.

in your time

For some reason, the comments from this post didn't get emailed to me, so I never realized anyone commented - that, or I have been hitting the bottle waaayyyy too hard at night (possible, but I don't think so).

Anyway, I just thought there were a few good comments on there that I wanted to flesh out here in my writing.

As with my previous post, I have not been feeling too great. I was on orals a few weeks ago. We went to Chicago and when my cousin escorted me to the el platform to visit a friend, I realized that I was really, really winded from walking with her. My friend commented on it when I called to tell him I was on my way. I blamed it on her walking too quickly. But the next day we were going to a Bears game, and I was having a hard time keeping up with my husband. He kept making comments about us missing the first quarter because I was slow. What didn't help was that the baby wanted only me to carry her (and any mom will tell you carrying a toddler in a winter coat is a sucky job) but I could only go a few feet before I had to put her down, cough (with my legs crossed so I wouldn't pee my pants) and then try again. It sucked.

So, as per my above linked post about my husband not"getting" CF these days, on the way home from that trip I commented (apparently more than once - note to self: stop thinking out loud)) that I really wasn't feeling well. What was running through my mind was: why don't I feel well after a round of cipro? Cipro always works. What if I got some nasty bug on the el? I feel crappy. Why was I so out of breath? etc. All I said though was, "I don't feel well." My husband (yes, I love him, really I do, but this was not a shining moment) replied with,"Why don't you stop complaining and do something about it?" I was hurt and angry. What more should I do? I was trying to do something about it! I felt he was insensitive and mean. We got into another "You-don't-get-it" argument.

But here is the thing. Two comments were made in my other post that I have been thinking about. One is that idea that I am coming from denial into an uneasyacceptance of CF. This is so true. I am trying to be proactive, to do the right things to prolong my good health, but I am not at ease with my identitiy as a cystic. I am still fighting it. And much of my battle is inside. My fears and worries have not all surfaced yet becuase in that is a greater admission of acceptance that I am not sure I am ready to share. Which leads to the second comment. The idea that I am reponsible for the image of CF that my husband has. I am the one who put it in his mind in the first place and it is up to me to change it - though I can't expect his vision to change along with mine - he comes at this from a total loss. He knew nothing of CF before me. He has gone along for the ride easily because it has been an easy ride. Somw of my fears and worries have not come to the surface yet. I fear wearing O2 to my kid's school functrions when they get older. I fear my first hospital stay....legitimate fears for a CFers I think, but hard to grasp for someone who is just observing this disease in their rather healthy mate. And I have not shared all of my fears about CF with him...some of them are still deep within me, larger than just the physical manifestations...shame at being imperfect, embarrassment, loathing of pity, afraid of admitting that I'll likely die young.... My husband only knows what I have shared with him and in his POV, why should I worry about those things when they are not part of my present state?

I mentioned to him recently that depending on what my cultures and PFTS showed, I may be in for another round of IVs. I could see on his face saddness, and confusion. I seem just fine to him. He hasn't even noticed me coughing more. He doesn't know this body, he doesn't know CF...all he understands is the present situation. If that means IVs, then he'll be there, helping me along the way. I think maybe that is all I can expect from him right now. He will learn along with me, at his own pace. I'm not sure I can ask for more.

I'm so tired, I haven't slept a wink

The lady from the CF chapter called back, I think, because she didn't leave a message. Pretty annoying and unprofessional if you ask me - but then again, my voicemail is Cookie MOnster, so maybe she wasn't sure if she had the right number. I guess I have to call again.

I got some lab work back today (800 years later). Looks like I will probably be going on abx again. No big surprize.

I felt crappy all day - sleepy and lethargic. It sucks because I have never used Cf as an excuse or a reason to do or to do anything - all the while I thought it was because I was so "tough," not gonna let my diease get me down, etc., though really it was just a form of denial. Now when I am tired and worn out, I feel like I CAN'T say it is Cf related because I feel no one would believe me. I guess it is a case of the boy who cried wolf....though in reverse, maybe?