The Long Doctors' Appointment, It is an honor to meet me.

I had a long doctors' appointment today and it did not go well. All of my shit came back shitty. Except some of my blood work was good. So that's good. "I've got that going for me," as they say.

I don't want to get into the details of what went wrong at my appointment or what's going wrong with my health. Instead, let's focus on the toll these long demanding appointments take. I was trying to calculate in my head, how many of these high stakes, invasive appointments have a I endured over my lifetime? I am almost 40. So the minimum I would say is 80. In the time just before and after my transplant, most times I had to go to the doctor at least once a week. So, let's add another, say, 24 appointments there. Right now, I got about once a month, 12 more appointments. During my leave of absence this year, I had 17 appointments over 25 days off. The math goes on and on.

The math is just as exhausting as the appointments are so let's just say I have had hundreds of days like today. And yesterday. The day I prepare for the appointment by timing my meds with an actual buzzer so that the levels will be exactly right, the day when I don't drink alcohol but push a lot of water, and don't eat anything too fatty so my kidney and liver functions will be as normal as can be. The next day I wake up an hour earlier than I need to do a nebulizer treatment so my breathing tests will look as good as they can, I lidocaine up my arm with a patch so the blood work won't hurt too bad, I skip breakfast and morning meds til after they check my levels, and I leave for the hospital hungry, tired and already needing 1/2 an ativan to get out the door.

I have my blood work done and unless it's Lilly, the phlebotomist I like, I get a passive aggressive lecture about how I must have bad veins, transplant patients have had so much work done, cystic fibrosis patients are always dehydrated, they hope they can find a good one. They don't believe me when I tell them I have good veins in my right arm and bad ones in my left from bad phlebotomists like them that tore up my arm trying to get a PICC line in when I was 19 and too naive to kick them out of my hospital room. I haven't gotten a line in my left arm since 1999, but that doesn't stop them from trying. They get their 5-10 tubes of the good stuff from my right arm tap, and I move on to a chest xray.

My chest x-ray goes mostly like yours or anyone else's except there are old notes in my chart about all the superbugs my old lungs had, and all the times my chest has been opened, and the superglue they used to put my lymphatic system back together after they cut it and it gushed into my chest cavity- so I get ushered back quickly with a mask and a gown and the students gather around to look at my film and the radiologist says something like "It's an honor to meet you." Legit. She said that once. Like I am Michelle Obama or the Queen of England.

I am the Princess of Radiology, and it is an honor to meet me.

Sunrise, Sunset. Sunrise, Sunset

I hope my buddy DW likes that title. :) or LK. or J-sing^. I could go on.

So, I've been down lately and trying not to write too much about it on the blog, because people get overly worried. I joked on twitter that there is a list in BOTH of my transplant binders (from both centers) about the "normal" feelings during the transplant process, and someone was tweeting about suicide awareness, and tweeted a list of signs. Would you believe that 1/2 of the sings of suicide are "normal" feelings during transplant? What does that say? I don't know, but it ain't good.

Here are the signs of suicide, (and this post is NOT a joke about suicide, so don't write me any nasty emails).

Suicide Warning Signs: (Available 6/28/10 http://www.suicide.org/suicide-warning-signs.html)

My side notes in italics

• Appearing depressed or sad[...]
• Talking or writing about death[...] - one of my binders actually recommends this.
  

• Withdrawing from family and friends. - worded differently, "your relationships with family and friends may change dramatically...
  
• Feeling hopeless.

• Feeling helpless.

• Feeling strong anger or rage.

• Feeling trapped -- like there is no way out of a situation.

• Experiencing dramatic mood changes - this, the binders blame on the steroids and other meds. I blame the experience itself, though it is certainly compounded by the double steroid rage that is also making me into a luscious lady!
  

• Abusing drugs or alcohol - this they warn against but I have known some that do it. Me, with my bleeding lungs, cannot partake to this degree.

• Exhibiting a change in personality. - doy.
  
• Acting impulsively. - What was that "live like you were dying" bullshit that I was tweeting about the other day. This also came up in my interview with wnpr, Am I having random fantasies of skydiving and going to Milan? Uh, no. I am having fantasies about long shopping trips at Target and waking up with a reason to get dressed (i.e. work). And I want a dog.
• Losing interest in most activities. - Yep.
  
• Experiencing a change in sleeping habits. - Ditto.
  
• Experiencing a change in eating habits. - Must work even harder on the fat making. I have succeeded by adding "ass-sitting" to the urban dictionary.
  
• Performing poorly at work or in school - Does being fired while you're waiting for lungs qualify as "doing poorly at work?"
  
• Giving away prized possessions. - In virtual terms, yes. I am the only one among my friends that has a will (the one for when you're dead), a living will (the one for when you worry that doctors will make you be dead), a health-care proxy (the one where you pick who is responsible for raising holy hell if your living will isn't followed and they try to make you be dead, or conversely, keep you alive after you are, sorta, dead.) --mine lists a wopping 5 people (which apparently is "a little weird," and do you know they make you put them in a horrifying order of importance that I have changed so many times that the "Patient Services Notary" knows me, personally, and tried to get me a date with one of the hot male nurses on my last dry run?
  
• Writing a will. - See above.
  
• Feeling excessive guilt or shame. - Considering I feel guilty even when I drive out of my way to the Full Service Only gas stations in Massachusetts, even though I am keeping them in business, I definitely have this problemo.
• Acting recklessly.- This one, apparently, is so common and crazy they had to list it twice. Does allowing my cat to eat Friskies wet food and two french fries per day count as reckless by proxy or munchausen-by-kitty behavior? 'Cause, then, I have it. And I have bought a lot of cheap rocker girl t-shirts at target for $8ea., but that is only because my fat and lusciousness has literally robbed me of all shirts of appropriate fit. (Take that, UnknownCystic and his friend and friend to BecketTheCat, UnknownFox).
  

So, there is my news in a nutshell. Once again, I am in no way suicidal. If I was, would I be on the damn tx list or fighting so hard to stay on it for these 8 months, 6 days, an about 7 hours? (Yes, I do remember the time of day when I forcibly hugged the head of Transplant Medicine, which I was told later, was a major event in the ICU, as it had never been seen before).

I am having some trouble with the fact that you start off on the list with them telling you that one of the criteria for listing is that you are not expected to live more than a year without a transplant. Then you spend some time on the list where everyone is making comments about how good your score is, how quickly you should get the surgery, how easy your recovery will be, and then it is 8 months later, and you think - only 4 more months and I'll be at a year, and then what? It is estimated that one person dies from CF every day in the USA (out of the 30,000 CF patients in the USA), and 19 people die waiting for organs, overall (non CF included).

I'm not saying that I'm dying here. I'm still living, and doing quite well at it, I might say. But I worry that some people think I'm guaranteed to get a transplant, and that I'm guaranteed to have an easy time of it, or even to survive it. And its simply not the case. The longer this process goes on, the more it seems like others think it's normal, and I think its... horrible. Others think that because my overall health has improved so much since October, and so has my activity level and ability to work- that I am "better"- let's not be confused- my lungs are not any better. It is only the work I've done to bring the rest of my body up to speed, to compensate for my lungs- that is better, along with, frankly, a lot of medical intervention. I joked with my doctor today, "I'm only one bipap nap away from respiratory failure," - and its true. My CO2 levels are still high. Not as high as they were, but TOO HIGH and without diligence they creep right back up.

All of my family members, and my friends here in Boston, and a lot of my theatre friends, or oldest friends from DG are so so so wonderful to me. Others, I feel, are banking on seeing me on the other side of surgery- perhaps because they can't deal with my medical situation, perhaps because they are just busy or have their own personal or family shit storms. I'm not upset with anyone, I just feel like - no one understands me but my bloggies, my immediate family, my most intimate group of friends here, and my old old homies. And you know what, that's a lot. But the question is, what about the other relationships? Can a gal live on 5 friends, 5 family members, and the internet alone? Maybe. Certainly, so far.

Now, I am rambling. And I don't even take Marinol anymore.

Goodnight and ps don't think I'm sad, I'm just all a-mess. Mess mess mess and now my cat thinks french fries are a midnight snack too. She is harrassing me. I leave you with this:

Cliff, Put Down That Hoagie!

You might be wondering, right about now - What does CG have to do with HH (Dr. Heathcliff Huxtible)? Well, I'll tell you. "Cliff," as we all know him, from The Cosby Show, had high blood pressure. His wife Claire, played by Phylicia Rashad (sp?), was the mighty police woman of all activities related to keeping his blood pressure down.

Poor HH was forced by Claire to avoid the following activities because of his high bp:

1) Eating Hoagies (as seen above)
2) Competing in his college alumni basketball game
3) Dealing with his daughter Sandra's husband, Eldon
4) Seeing his daughter, Vanessa, practice her "dance routine" with her "dance group" in their outfits *no image available.
5) Playing a rousing game of plattonk with his out-of-town friend.
6) Watching horror movies on halloween with his daughter, Rudy.
7) Watching cowboy movies where people get shot a lot.

Now, realizing that I don't really like hoagies and actually, salt is not a factor in my bp, considering the salt problems we CFers have, (Dr. U has asked me like a million times, "So you don't crave salt?!" and I'm like, "No! I'm sorry! Jeebers.")--I digress. So, I don't like hoagies, I don't play basketball, I don't have a daughter with a mysoginist husband or another daughter who dances to "the locomotion" in spandex, and I don't even know what country plattonk is from though I must say it looks like a mix of botchi ball and bowling, and because I am ascared of horror movies and bored by most cowboy movies ... you would think I would have no problem keeping my bp down.

But alas no!

The problem with my bp is not so much it, as that I when my bp is up, I get hemoptysis. Or perhaps vice versa. We will never know. The following things make my bp go up and I must avoid them at all costs:

1) Talking on the phone with [undisclosed party who can suck it.]
2) Pure cardio without proper warm up.
3) Cleaning my house (true, also a valid excuse for not keeping the place shiny and super)
4) Going to the doctor (this remains a conflict of interest and there is always a great bp debate when bp is at the doctor)
5) Talking to much about money, insurance, politics, the past, the future, or the present. :)

So, you know, I really have to avoid a lot of topics.

Actually, in all seriousness, I am realizing that seeking the no-stress lifestyle is a full time job, requires much sleeping late, exercise (gentle exercise), much eating, napping, laughing, music, carefully planned companionship, and a supportive group of family and friends. Thank goodness I have all these things I need! I am very blessed.

On that note, I leave you this bit of comedy, and two important links:



NEW BLOG THAT I LOVE!!! http://justinekomin.blogspot.com/

T-SHIRT ORDERING TIME!!! http://cysticgal.blogspot.com/2010/05/t-shirt-time.html

CG and the Terrible, Horrible, No Good, Very Bad TODAY

Okay I made it through one bad day. One bad bad bad bad day.

Today, it was the sort of day where CG feels hopeless about her health and her personal and professional life in one big ball of sad sad sad, bad bad bad day.

The good side of today: I made it through the day without sending angry sad sad bad bad emails to my ex boyfriend across town, or the two friends I have lost in the last six months. Similarly, I did not make any rash family phone calls. I managed to delete the few snide comments on made on Facebook. I DID manage to take all my meds and do that whole regime, complete with a PORT needle change, with only one small anxiety type of situation about the needle's length. Also, I talked to the three people that I can talk to when I am in this slightly incoherent state of hopelessness and nose-blowing. Three. That's a lot.

The bad side of today: I slept most of the day. When I wasn't awake and crying, I was asleep. That can't be good. And I accomplished nothing nothing nothing that wasn't on my "health" list of to-do's. Also, the bad side to today was that I had today at all.

Tomorrow will have to be better. Because it won't be today. So that's good.

Love, CG

No Full Moon? Big Disappoinment. A non-CF post just to update.

I cannot believe there was not a full moon this week.

Tonight's blog will be short. In fact, it is 12: 20 AM so I really missed Friday's deadline. Today, I stayed home sick to do my meds and airway clearance (in which I made great strides, and if your doc ever wants to show your CT, watch it. It's a great motivator for the hows/whens/how muchs of your airway clearance!).

Whilst I was staying home, a man tried to break into my house, apparently to beat up another man. A "black man!" which made him yell that at me through the window, which made me think he was a) crazy b) a rapist for wanting to "hang up the phone! There's a black man!!!", c) scary scary scary. d) a racist. Did I mention that he had no shirt on and some crazy tattoos?

I had quiet a day after that. Nuff said. Where IS Kyra Sedgwick when you need her? Sargeant Provenza would have been all over this.

Thank god for valium, naps, friends and sleep.

T-Money and J-Teach came over. They are the best of friends, goodnight.

REASON #11: The Ultimate Rationalization

This is a follow-up to my original post, The Top Ten Reasons Not to Exercise (with CF). Please check it out if you haven't already, so that you'll understand the nature of this post. Like the original Top Ten Reasons, it will be in two parts. A) The narrative reason that a CFer thinks/says when sharing why they simply cannot exercise. B) Why their narrative featured in Part A is totally craptacular.

PART A: The Reason
11. The Ultimate Rationalization: (A) I just want to live my life . . . or some other very honest, yet very dramatic statement. These might include: (B) I'm so tired of all of this; (C) People without CF don't have to work out on their weekends/holidays/birthday; (D) It doesn't make a difference anyway, I'm going to die from this disease whether I exercise right now or not.

WARNING! (Part E) When pushed, the CFer may raise the stakes in conversation and exhibit hostile behavior, muttering phrases such as: When you have 40% lung capacity you can tell me what I need to do; If you ask me whether or not I worked out again, I'm going to sell that bleeping treadmill on craigslist tomorrow; or my personal favorite: Ahh! Leave me the f alone . . . What are we doing for dinner?

PART B: Why that reason is total crap.
11. Okay, before I address each point - Get the fuck over yourself for a second. Or better yet, 45 minutes. Get over yourself for 45 minutes and work out this little mental breakdown while you're on the treadmill.

Now, Addressing Reason as Quoted A) Yes, you want to live your life. You deserve to live a healthy, balanced life. If you don't have 3o minutes to spare today, then clearly your life is not very balanced. Because honey, you deserve 30 minutes of working out, and that time is all for you. Be late to the party, or go in late to work. Stay up late -it's fun. Take a sick day if you have to. Get some time on the schedule for you you you and get that ass on the treadmill while you're at it.

B) If you are feeling emotionally, mentally or physically fatigued there is no excuse for avoiding exercise. It will help you with all of these problems. It's a proven fact. Don't make me get all citationy again. Especially if your lungs feel all closed up and swampy, you need to get some exercise to breath clearer, then think clearer, then feel a little better.

C) If we are going to list all of the things that people without CF don't have to do, we could be here all day. But, we should then list every disease and personal problem you don't have, too, and make a list of all the shit you don't deal with that others do. Life is not fair. Even a seven year old knows that. Go tell someone in a wheelchair that you're so upset about walking on the treadmill for 30 minutes. See what that person has to tell you, if you're interested in fairness.

D) Every single day you make about a hundred decisions that actively affect the status of your body tomorrow. You've known that since you were only a little child. So don't get all high and mighty about this issue like it's a realization you just had over a cup of tea and Oprah. You obviously want to live in as health of a body as you can, for as long as you can (and if not, that's okay too, for a little while, but you should go talk to someone about it, seriously). If you want to live in the healthiest version of you, you gotta exercise. And you're just being dramatic so shut the f up. PS: Don't make your loved ones cry by saying that crap out loud. It is mean.

In regards to Part E) WARNING: There is no way out of these conversations for the non CFer. No, parents, spouses, lovers and friends. This is the CF equivalent of "Do I look fat in this?" The conversation is only gonna get worse.

For the CFer him/herself: When faced with the horrible Reason #11, Part E: You need to do a few things: 1) Calm down by whatever means necessary. Hot bath. Hot toddie. Whatever. 2) You need to eat something that you really really like to eat. 3) You need to spend some time with yourself 4) You need to exercise and go to bed. If you really really can't do the exercise part, you have to do all the other 3 steps, and go to bed early. Sleep well, and wake up in a better place tomorrow.

PS. You should only experience Reason #11 Part E one or two times per year. So if you're riding the Ultimate Rationalization Fast Train on a weekly basis, it's time to get some help with finding a better way to cope. Seriously. Nothing a little anti-depressant, therapy, or a trip to see Mom can't fix. Whatever works for you.

With Love, CG

Anger: Tell Me How You Really Feel

NEWSFLASH!
A big day for CG!
CG Welcomes New International Readers!
Hello, Australia and Netherlands!
*Also, hello to new readers in Canada, UK and Turkey*
**First time EVER, 37 UNIQUE READERS TODAY!**
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One of my first reader inquiries came from KR, who wrote, "Hey, CG, hope you'll say more about why you think you've been feeling angry of late, since I suspect the reasons will be complex and insightful. An impulse not to be angry--to do one's best to keep-it-positive--is admirable, but sometimes anger is the most honest and justified reaction to a situation. And it's often a productive one. To whit: maybe anger is one of the big reasons that you started this blog, and that's nothing to apologize for/feel bad about. Just sayin'."

I have been meaning to follow up on this comment for a while. I needed some time to think on it. This posting will be incomplete and I will have to follow up in later posts, because it is already very late and I am trying to keep myself to a post-by-midnight type of schedule.

So . . . I think that I have been increasingly angry over the last three years about having CF. I was so angry a few years ago that I was turning away, pretty dramatically, from the medical establishment altogether. I was meeting with doctors only to get prescriptions, and on a pretty hard-core self-management bend from about 2005-2008. Thankfully, during this time I suffered very few periods of illness, and no real exacerbation or crisis. Unfortunately, I also lost a lot of my lung capacity during this period, which must have slowly sort of eeked away from me while I harnessed my fear of doctors and drove the ship of my personal life and career.

Looking back, I am not sure that I would have done it any other way, or that staying tethered to the CF Clinic would have changed my health outcome. From 2005-2008 I led a very productive, very physically active life that has propelled me into the lifestyle that I have now. If I had followed the medical advice I was getting at that time, something in my spirit and in my logical mind tell me that I actually would have suffered a worse fate.

So, I became angrier and angrier at the medical community, at the entity of CF, and at people in my life who were asking me to make CF a greater focus. I had been lied to by the medical community. They told me that my life was ending, and they were wrong. My life is still going, years later. They told me that the things I enjoyed: teaching, rehearsing, socializing - were contributing to my poor health. I believe that these things actually are my strongest reasons to live.

I have much more to say on this topic, but I will leave it for another day, as it is time for sleep and past my "publish post" deadline!

But this is the point: I was angry, and am angry, because I am having trouble resting in the middle of my distrust with the medical community, and my need to be involved with them, my fear of doctors in general, and my security with my current medical staff. I am in a place that to me, at this point, seems innavigable. And I'm not used that. I'm a very directed, very forward-moving type of person. Being unable to drive my own ship, and being forced to have a partner who I will never really trust (the medical community) makes me so so so angry.

Goodnight,
CG

NOTE IN FOLLOW UP 7/3/09: I do currently trust my CF Clinic staff, I think, as much as I am capable of trusting medical professionals. I am not looking to change clinics right now. I think that would make my "issues" worse. But I welcome tons of suggestions, so keep 'em coming, people.

Florence Nightingale Syndrome: What Can IT do for YOU?

I have a confession to make and I trust that it will stay within the confines of this blog posting and my blog's very exclusive, very private readership*:

I'm madly in love with my Valvoline service professional. He's so kind, so caring. He always calls me "sweetheart," he sends me correspondence if he hasn't heard from me in awhile, he is always honest with me - about the status of my air filter(1). He is honorable.

Also, I have this thing on the side with my laundry man. He does my laundry week in and week out. He is committed to me. He folds my clothes so nicely and he even lifts them into my trunk, he is unending in his laundry ways. He doesn't make eye contact with me because, well, he has a wonky eye (2), but still, I can tell he shares in my feelings. And for only a dollar a pound.

I have been considering a lifestyle change due to my lovely maid, Wanessa (3). She is adorable in her fitted sheet changing techniques. She bravely vacuums my curtains and behind my couch once a week. She shows her true strength of character in bathroom and litter box areas. She has changed all of my views - on cleaning.

And last night I had a short-lived thing with a waiter at Legal Sea Foods (4). It was a brief affair - over by the end of my surf and turf. I will always think back on him kindly.

Oh, and that guy from the Arby's who gave me the extra cheese sauce. He was so handsome. I wish it could have lasted - the cheese sauce that is (5).

And don't even get me started on Barack Obama.

I also have to confess, I do have this small thing for my CF doc, Dr. U-Bird^. He is always honest with me. He listens to me even when I'm a crazy coockie biotch. He always informs me if he talks behind my back - to the other CF Clinic staff - in creating my treatment plans. He also cares about how I feel. And he has earned my trust.

In all but one of these situations, I had a small, mostly fictitious crush on my caretaker, because you know what? It works for me. In the Legal Seafoods situation however, in full disclosure I must say, I had an actual crush on the guy.

I would like to encourage all of the CFers out there to ask,

"What can Florence Nightingale Syndrome do for YOU?"

a) It can make you more highly productive in getting things done like oil changes!

b) You'll never do laundry again!

c) You'll have less dust and pet hair in your house and not inahle fumes cleaning the bathroom. Bonus: less germs in the bathroom and kitchen!

d) Clearly, it can make you eat more by constantly seeking that Nightingale Waiter Love high.

e) You will become addicted to cheese sauce. This can only help your calorie intake because cheese sauce is only available in high calorie situations.

f) You will become more politically active and aware! YES WE CAN steal him from Michelle, you'll say.

More importantly . . .
g) It can make you more likely to attend clinic, and to do so with your healthiest, best self present.

Now, obviously I am not suggesting that I, or anyone, should develop actual romantic feelings for their doctors (or their Valvoline service professionals, for that matter). But you should develop a trust for them. If you find that your doctor is not honest, does not listen, does not properly inform you of your care, or doesn't care about how you feel, it is time to find a new doctor. The same is true for your Arby's cheese sauce administrator.

SEVEN Ways To Develop Florence Nightingale Syndrome
In Your Medical Environment:

1) Ask the doctor if you can call her/him by a former lover's name (one you still like).

2) Try to figure out if your doctor looks vaguely like any attractive famous actors. Then squint at clinic.

3) Get dressed up for clinic including perfume. Blatantly ask, "Don't I look great?"

4) Entertain yourself with inappropriate sexual jokes and/or advances during a bronch, PICC placement, or other procedure, then blame it on the "ah-ah-ah-ah-ah-Sedation Meds(6)."

5) At the beginning of your clinic appointment, boldly state, "Let's just keep this between us."

6) At the end of your clinic appointment, ask your doc, "Was it good for you?"

7m) Sneak out of clinic before it's over so you don't have to, you know, talk about it.

Okay that last one is just for the male CF patients out there. This alternative is offered for the girls.

7f) Stay at clinic 'til the next morning. Shower there and then make a breakfast even if your doc has left for "rounds."

Okay Okay Okay, so this might sound a little extreme. I guess what I'm trying to say here is, YOU need to find YOUR way to love CF Clinic. This is my subtextual way. It and Eminem. And the Valium. And it's working for me so far.

Goodnight, Y'All. Mystery Solved,
CG

Notes:
*Duh, everyone can read this blog in the whole world.
(1) Okay, so one time I think he was ripping me off.
(2) I think wonky eyes are adorable so this is not a put down.
(3) Her real name and I'm really straight.
(4) I would have actually done this guy if the topic came up. I waited, it didn't.
(5) My affair with the LS guy lasted longer than that damn cheese sauce.
^A pseudonym I made up according to the secret CG pseudonym creation equation. I sincerely hope Dr. U-Bird gets my tone here. And doesn't sue me for a little humor.
(6) This true CF clinic folklore submitted by Cystic Lady. Available via google chat: 12:01 a.m. 7/2/09

Note to all: I'm just kidding here. Go satire, get your groove on. Best of all, I think I'm the target of my own satire here. Ha!

Munchausen by Kitty?

Munchausen by Proxy syndrome is basically when parents make their kids sick so that they can get some sort of attention. It has nothing, whatsoever, to do with CF. Except in this one blog posting. And barring any bizarro grad student papers or medical studies I may not have read!

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NEWSFLASH!
CG currently tracking 300th Unique Reader!
Stay tuned! It should happen tonight!

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CG responds to reader request from B-Tech^
"do away with the black background!"

"I can't read this!"
A new look for CG!

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While I was on my Road Trip 2009, my pet nanny C-oockie^, came down with a case of Munchausen by Kitty Syndrome for my cat, S-Purry^. It all started in March, when Cystic Lady and I left on a cruise. At that time, Spurry was so distraught over my departure that apparently, he refused to pee or drink water while I was away. He got a really bad bladder infection and lost a bunch of weight during the kitty protest to modern veterinary medicine that followed. I admired his tenacity in refusing to eat his new vet-approved food, but poor Spurry, he lost 6 kitty cat pounds! Coockie, my pet nanny, has been concerned about poor Sprurry ever since. She emailed him twice.

When she arrived here last week, ready to cat nanny away, she was alarmed about poor Spurry's weight loss. She called me and left me a frantic message. I called her back and reminded her about Spurry's bladder infections, and told her to read my instructions, that he is under the care of his vet, and that he is on a special wet food diet to assure that he will get enough water while he gains his weight back.

This, apparently, was not enough for Coockie. She made a horrible cat nanny error. That night, she left out a huge bowl of dry food for Spurry. And you know what? He ate all of it. And then what? He got the poops.

She told me later, "I just couldn't understand why an underweight cat wouldn't have food available to him, all the time." Spurry, you see, is not a normal cat. He eats anything available to him, like a dog. Spurry is more of a dog than a cat. Spurry, in this house, is often called "pup pup" for this very reason. So, directions aside, Coockie gave my cat the terrible horrible no good very bad poops. And then what? She had to clean it and it and it and it and it up. Because she is the cat nanny, and I was on vacay.

Coockie could not then stop her pet nanny madness. She called me in a poop frantic state and declared that there simply must be SOMETHING WRONG with Spurry. It was not just the over-eating. He must be gravely ill. He must have the poops for a reason. The poops must always have a reason. Now, you CF readers know that of course the poops always have not one, but TWO REASONS. One of those is something complicated you must talk to a doctor about. The other reason is the food you ate.

I doubt that any of you that had the poops recently thought to yourself, "You know what I should do while my stomach's all fucked up? Go eat and eat and eat!" Poor stupid cat Spurry. Coockie put another bowl of dry food out for him, and made a vet appointment for the next day.

The vet told her that she had overfed him, and the vet ran a bunch of bloodwork to double-check if "SOMETHING WAS WRONG!!!" with Spurry, and the vet hydrated poor Spurry who now has a bald spot on his neck that looks funny.

What was Coockie's problem? Simple: she is a vet tech at a local cat emergency hospital. She usually sees cats when they are gravely ill and it is off-hours. She usually sees cat owners when they are in a state of panic/grief. And she put all this on my poor Spurry and created a situation where he was sick because of what she did, and she was the only one that could "save him" by taking him to the vet. She even sent me an email today saying, "I'm so glad our 'Spurry' is doing well. Where do we go from here?"

NOW-what does this have to do with CF?

One of the things that I struggle with in CF is the fact that like Coockie, I am usually at the hospital only in extreme circumstances. I had avoided it altogether for about three years until this past one. So when I'm there, I literally make myself a little sick by getting too "in my head" about the experience. I think things are wrong with me that aren't, and I have trouble accepting the things that ARE wrong with me. I get mad at people who are talking to me reasonably. I get a little Coockie.

Which is only one o away from Cockie, and only an "ie" away from being a total Coock.

The other similarity is that Coockie has experienced an endless cycle of kitties getting really sick and some of them getting mostly better, while others never did. In CF, we have personally experienced so many cycles of getting sick and getting better, or getting sick and NOT getting better, that it can be difficult on a given day to really gauge what is going on, in reality, not in our coockie future planning, or our coockie pasts.

If any of this sounds familiar, please email me at cysticgal@gmail.com or post a comment below. I would love to know, do you ever over-do it because you can't remember that you're sick? Or do you ever lay around all day even though you feel fine? Do you ever go to the doctor thinking they'll definitely put you in the hospital, and then your PFTs are good? Or go in thinking you are great, and it turns out, you're totally sick? What's your story, Cystic Peeps?

Tomorrow's Topic: One Coockie Day For CG

Goodnight from home,
CG

The "Naming" of "Things"

"Okay, Ms. Gal, I hear you don't feel well. I think it might be time for a runaway truck ramp . . . "

**********************

NEWSFLASH!

"CG" welcomes readers from 3 new states:
Idaho, Connecticut, Virginia!
Hellooooo!
Only 29 states to go!

On my way home from Road Trip 2009, I saw this:

and indeed, a ramp on the side of the road went up a steep hill with a service station at the top. This got me to thinking . . .

When I was a kid the doctors called going into the hospital with CF a "tune-up" no matter how sick someone was. You could be REALLY REALLY sick like my sister was sometimes, and they would call it "a tune up," or you could be vaguely sort of ? ill ? and hadn't been in the hospital in awhile, and they would call it "a tune up."

I believe this false branding was the very beginning of my anxiety about doctors. I mean, if they were going to go with the whole "car" metaphor, they really should have differentiated, "Well, CGal, you should consider getting an oil change. It will help your sinuses," or "CGal! You need a tow truck now or you're going to lose a lot of blood! Nevermind, CGal, we've got to get started! TOW TRUCK!!"

Either way, "tune up" was never the right way to describe going into the hospital for CF. This name implied that you would go in to the "service station" in the morning and be done by the end of the day. This name implied that you would definitely feel better at the end. This name implied that there was nothing actually wrong with your "car" in the first place, you were just being a responsible "car owner" to get a "tune up." And the the most untrue implication of all, the name implies that the cost to you will be very low.

What a lie.

In any event, if hospitalizations are meant to be like tune-ups, I would like them to be more like this: so that the maze of life can keep going by on the left, and you can pull off to the right, all crazy with your health out of control, and then a team of dudes and chicks will work on your "car" really quick because they know you can't stay at the top of a steep hill on the side of the "road" forever. When you're all fixed, zoom zoom zoom you go, back into the fast lane. Merging away and no one even notices. Maybe you don't even have to drive your bunk-ass truck anymore. :)

(please disregard blatant overuse of metaphor and quotation marks to "prove" my "point.")

P.S. CGal is writing from HOME tonight. Tomorrow's topic: "Munchowsin's by Kitty?"

I Still Haven't Found What I'm Lookin' For?

From The Road:

Newsflash!
Now you can REALLY get "CG" straight to your inbox!
Click to the left!

I accomplished a lot on this trip, on the one hand: I spent a lot of time with my brother, CSibling; I spent a lot of time with my sweetie; I spent lots of time with my best friends including L-VIPie,^ and A-Dramie,^ as well as a lot of other older friends in my hometown.

On the other hand, I did not accomplish a major goal of my trip, and in this failure I realized one important thing: I hate talking about my health. Ironic, isn't it? I started this nightly blog about my health (and lack of) and its affect on my life, but in person, IRL, as they say, I hate it when the topic comes up and I hate EVEN WORSE bringing the topic up myself. When I started off on this road trip I had this idealistic fantasy of having frank, open discussions with CSibling, sweetie, L-VIPie and A-Dramie. I wanted to spend some time discussing where my health is currently and that I might be considering transplant in the next year or so if my health continues to decline at the same rate it has in the last year.

Instead, I avoided the topic most of the time, per usual, and even changed the subject the few times it came up. So, GREAT. Most of the time, I was having a lot of fun, or felt that I was about to have a lot of fun in a situation, and really didn't want to pause/ruin the impending fun with a big discussion that would surely upset me more than my discussion-mates.

Clearly, I was also experiencing a lot of stress on this trip because I had really bad dreams last night, which I will leave to be the subject of another blog post . . . More on THIS topic in the future as well, as I end one of my last from-the-road posts.

I hope to return home tomorrow, but we'll see. . . I still have a long way to go and I'm committed to resting and not hurrying a bit on this trip.

Love To All!
CG

Magnum Opus CG:

A brief mission statement on the purpose of this blog and summer writing project.

NEWSFLASH FIRST!
CG currently tracking 200th Unique Reader . . . Congratulations, Chesterfield, Missouri!

I'll start by saying that I don't seem to be sure how to articulate my mission, yet. I hope that by the end of the summer, through writing the blog, I will come to discover where my writing is headed. Here is what I know so far . . .

Three Things I Don't Want This Blog To Be:

1) A personal diary. I do not plan to tell you where I go and what I do unless there is some more Cystic-Gal-related reflection in the storytelling. I am realizing, already, that this is the hardest rule to follow. However, I really want my blog to be about how CF affects my day to day experiences - not just my day to day experiences in general.

2) A rant and rave type of page. I don't want to just be needlessly throwing thoughts out there without thought for the real life relationships I and others have. I am still struggling with maybe removing my Asthma-pal post for this reason.

3) An over-simplication of CF, either positive or negative. [...]

Five Things I Want This Blog To Be:

1) A place to get feedback on the writing. In the theatre, we would call this an open reading of sorts. An initial place to track reactions and interest to the topics and my dealings with them.

2) A place to e-meet people with CF and their loved ones, particularly other "Cystic Gals" out there.

3) A place to express parts of my story with CF that I have never told, or that I have rarely shared with people in my life.

4) A tool for dealing with my anxiety regarding the medical community. I express myself best through writing, but I have come to realize that without a true audience, I do very little writing. Journal Schmournal, I say. I need a reader. Congratulations, it's YOU! I must say, I am least excited about this aspect of the blog, but it is an honest purpose of the blog, so I must list it.

5) Funny and Balanced. I want people to enjoy reading my blog even if I am dealing, at times, with heavy topics. I want to keep a balance in my writing.

That's what I know so far . . . I'll update at the end of the summer. In the meantime, speaking of feedback, what do YOU hope to GAIN from reading this blog? Reminder! CG offers anonymous commenting . . . oooh! intriguing!

Thank for reading,
CG

Eminem: The Soundtrack of American Medicine AND good for lung capacity?*

A Humorous Look at Music, Medicine and Michael Phelps

NEWSFLASH!
"CYSTIC GAL" Welcomes First Neighbors to the North - Hello Alberta!
NEW in CG: Readership Stats! We're really growing, CG community.
Keep up the good work.
You can follow and comment on "Cystic Gal" Anonymously. Email cysticgal@gmail.com with questions :)

I know what you're thinking: Cystic Gal, what the h are you talking about? Em-in-em? What does a white rapper have to do with Cystic Fibrosis? Stay on message, CG. Stay on message.

One of the many things I have learned in the past two years, while tackling my fear of doctors (see future posts) (oh wait, you can't see the future, you can only see the past posts) (oh . . . CG scratches forehead, pondering . . .) . . .

One of the things I have learned in the past two years is that it helps me to detach myself from the medical experience as much as possible so that I can think clearly while experiencing it. I was told that these things could help: "trashy magazines" (i.e. ones that cover "Jon and Kate Plus 8," not ones with multiple x's in the titles); I-Pod tunage; texting my pals; Valium (see prior posts! There we go!); bring an IRL in real life pal; etc. Today I will cover the best one of these tactics found so far:

Medical I-Pod Tunage: CG's Advice

The key to finding a soundtrack for your personal medical experience is to name at least three emotional states that you commonly experience in the medical environment. Are you sad? Are you confused? Are you angry? Are you a smartie pants? Are you nervous?

Narrowing down your complex emotions may be the hardest part. After that, finding some sounds that match is pretty easy. Which brings me, your CG, to Eminem.

There is something about Eminem and his self-loathing yet self-aggrandizing adolescent bullshittery, set to the backdrop (usually) of both a serious bass sound and an 80's style electric guitar, that really suits my CF clinic experience. All this with rhyming and the occasional random country singer guest spot that none of us clearly understand.

Other musicians that do it for me: Guns N Roses; Greenday; The All-American Rejects; Tom Petty and the Heartbreakers (actually, any Tom Petty time period); Pink, Snow Patrol; MGMT; Death Cab For Cutie; L'il Wayne

My sister, Cystic Lady, became particularly fond of Eminem herself during her transplant experience in 2003. She would listen to Eminem at pulmonary rehab, in the car to and fro, and around the house. She would listen to him so much that my own mother, who otherwise prefers Fleetwood Mac, now admits that she misses her Eminem days with my sister.

To summarize, in my brief blog-research and IRL experiences, I have come to know that Eminem is a common IPod favorite of transplant patients and Michael Phelps. What do we learn from this? Obviously, it only takes a little bit of simple math to prove an important, inspiring truth.

Michael Phelps = Freakishly Large Lung Capacity
Michael Phelps = Love for Eminem
therefore:
Love for Eminem = Good for Lung Capacity*

I'm no mathematician, but the facts are the facts people.
Be well, CG

Tomorrow's Topic: CG's Mission: A Work in Progress

*Obviously, I totally made this shit up people.

Just the News.

NEWSFLASH! "CYSTIC GAL" READERSHIP UP 2400% Since Day One!! no kiddin', man! CG Welcomes First Readers From West Coast - hello out there! CG HAS GONE NATIONWIDE!

ALSO: You can follow and comment on "Cystic Gal" Anonymously. Email cysticgal@gmail.com with questions :)

It has been a long day. I will have to write to you eloquently tomorrow (uh...hopefully). The news is, I got my PICC line out using the bartering techniques of Cystic Lady (my sister) and also Valium (see previous post.) There is much MUCH more to tell, and alas, I am tired, and must tell you tomorrow. I had a great dinner with T-Money^, H-Mama^, and I'll just say it, a margarita too.

Love, (and hot showers!)
CG
*Cystic Gal is bad at math

Valium: A Med That Makes My Day (or night)

NEWSFLASH! CYSTIC GAL READERSHIP UP 900%*
* Since Day One

Ok ok ok. Most people probably wouldn't want to write on the internet that they take valium. But that is one of the great things about this mostly anonymous blog, heh? I planned to publish tonight's blog about anger, in response to KR's response below. Then . . .

I had a reallly bad day today. I slept til Noon for no real reason and missed one of my meds. Recently I took an internet quiz and in response to "Last time you slept in late, what was the reason?" my response was "Could not muster will to live."

This, indeed, seemed to be my reason this morning. Also, it's been freakishly cold out. It's hard to get out of bed when it's cold out! I did not get out of the house until about 5pm. Problem? I didn't have anything to do. I did not have one single place to go. I drove around ruining the planet until it hit me :

Surf and Turf.

What I needed to perk up the day was a piece of meat next to some fish next to some mashed potatoes. And a pal. A few phone calls later and Ta Da! I have a pal to accompany me. T-Money^, in fact. We had a lovely meal together and I'm driving home, wind in my hair, looking forward to getting my PICC line out tomorrow. YAY! Freedom! Long hot showers, short sleeve shirts, and unencumbered make outs with my sweetie, here I come! This fantasy builds and builds (truthfully, mostly the shower part) and I drive along home . . .pull in the driveway. . . .reach my porch and see . . .

Two huge boxes from the home health company. I knew instantly what they were: a week of medicine for my little teeny tiny veins :( And, well, I freaked out. As my friend K-Ed^ would say, I flipped my shit. Thank goodness for me, I have a sister! That's right, CG users at large, I'm revealing some personal info. I have a sister, also a cystic gal herself! She talked me down from the mountain of feelings I experienced by asking me one simple question: What's the worst thing that could happen here? And you know what, I had all the answers:)

Unfortunately for me, I also had a high heart rate and had worked up a sweat and some tears. So I turned to my old sleepytime pal, Valium. He's always there for me and frankly, I wish I had met him earlier in my life. I have had anxiety since I was a little kid, and worked through it for years and years much to the torment of my friends and immediate family. I never took meds for my anxiety until about 3 years ago, and they have been life-changing. Now I can do some things I couldn't do before:

Sleep; Wake; Think Clearly When Obstacles Arise; Make Big Decisions; Not Cry For Days At a Time; Not Break Stuff.

This was not always true!! Ok, more later. The thing about valium is, it makes you sleeeeeeepy!!