Quick updates. Today was certainly not as good of a day as yesterday. I was diggity dog tired most of the day. I slept a little later than I meant to (til 9), and ate a good breakfast, was sluggish through my morning meds and routine, and still felt poodidddlydoo most of the day. Very very tired. Though I checked my O2 and heartrate and bp this morning, I was tooling around the house feeling very tired, and very clammy (many many hot flashes from the lupron at this particular week.) Around 2PM, yes, 2PM, I checked my oxygen, and though I was wearing 1.5L, my O2 was 83! Well no kidding I felt like poo. I was poo! So, I turned up the juice.
Having low oxygen creep up on you is such a menace. Like having bad blood sugar - you feel like crap just enough to know that you feel like crap, but that crappy feeling keeps you from having logical thoughts like "maybe I oughtta check my sugar," or "maybe my 02 is low?" Instead you lay around for a few hours wondering, vaguely, what might be wrong.
Also the POTpill didn't help. But I gained 3 lbs this week. No diggity. No doubt.
I blame this low 02 on my awesome workout yesterday. I must've made me some muscle mass :)
Tonight, I was happy to see that Jackie Warner's workouts are back on OnDemand for free :) !! I did the 1-on-1 core workout and it was awesome! During the workout I started to fantasize about Jackie coming to Boston to do rehab with me and turn me into a hot rockin new lung havin dancing diva. This resulting in the following tweet:
Then, I watched grey's anatomy with one of my besties, C-Daddy. He baked cookies, I ate two pudding cups, and then we watched the show while eating cookies, pudding cups and ice cream. The POTpilldefinetly helps with that calorie consumption! Grey's was pretty good but resulted in this tweet:
CysticGalon grey's tonight georgeo'malley died, donated lungs to patient with #cysticfibrosis. (fictional). Hard to watch with my pal, but good 2 c.
Poor C-Daddy and I both got all misty eyed and cried because well, there is a lot to to think about there.
Hmm. This post is not nearly so much stream o consciousness as I would like. It's more like stream o hello kitty diary.
Oh wells, Goodnight, I'm gonna watch The Office and eat yet another pudding cup. I friggin love those pudding cups.
And don't you worry, DancingGal is coming!! I promise. CG
1 Cystic Gal+ 2 Cats + O2 Concentrator+ IV Meds+ Normal Meds+ Treadmill+ Peapod Delivery+ Laundry Drop Off+ Wanessa (if you don't know, you haven't been reading!)+ Full TIVO+ CysticLady+ H-Mama, J-Frusb, T-Money, J-teach+ All of my colleaguial love and support+ Bloggy Following and Support+ Awesome CF Team+ At least 3 Faux-Boyfriends= _____________________________
1 Happy, but busy, Cystic Gal at the at-home hospital
Tonight I was going to write a great article about vanity in the Cystic Gal equation, and reference a poem by my friend K. Rooney, which references something I said once, or maybe a couple of somethings a few times. So really I woulda ended up skipping the part where I reference her and just reference me and then brilliantly extemporize.
Then I worked out. Now my headache is back. Now I'm to bed.
I'm zeroing in on the headache being caused by higher use of supplemental O2, which does NOT lead to low O2, but might lead to CO retention. I'm a disaster.
I have a quirky relationship with God. Growing up Catholic, then straying/returning/straying/returning/un-declaring from Catholicism has provided me with a bizarre blending of the many ways in which the persona of God has been portrayed. Maybe you are like this too. You have a God that you think of, and you are certain that your picture of God is different than any other person's picture. Perhaps you and God share a chat every now and then.
My God is there for me for the serious situations. But he also has a comical side.
Every once in awhile, my God likes to send me a little sarcastic joke.
I promise you the below story is true.
I had a good day today at work, and tried all my magical ways to keep my oxygen perfect. (Laughter can begin here.) Despite my flawless and inspiring efforts at health maintenance, and a cup of coffee, I was developing a headache at the end of the day. As I made the heroic journey up the stairs from my basement, where I, like a good domestic partner to S-Purry and B-Kitty, put some laundry in, my headache became much worse. I stepped out onto my porch and sat, wearing my oxygen, trying to figure out if my headache was getting worse from climbing the stairs (I was low), or turning the juice up in anticipation of climbing the stairs (I was high/ dehydrating my sinuses). Feeling so very bad for my little self (sigh), I sat and became teary.
Then-
A robust specimen of shirtless athleticism rode his bike past my house.
I thought, "No wonder sick people feel like life is passing them by."
A mother and her teeny tiny baby (no stroller) passed by.
I thought, "Life is literally passing me by."
A car with a huge . . . ? magnet? on the car door, which said "choose LIFE" passed me by.
I laughed.
The moral of this joke to me from God: I was spending too much time on the porch feeling sorry for myself and not doing anything about my headache, or my life.
I only have a bit to type as tonight is dedicated to airway clearance, for serious, so I can only type while my Pulmozyme runs!
I have some Follow Up regarding oxygen for you! Thanks for your help last night. Especially tweeters.
Here is what I learned in my one day of research regarding my oxygen troubles, mostly contributed by Cystic Lady.
Tips on Oxygen for the Working (Cystic) Gal:
1) Always have an extra mini tank in your trunk that you don't use unless you absolutely have to. Like a "Please go to my car and get the tank from my trunk," type of scenario.
2) Leave an extra tank in your workplace.
3) You should not carry your tanks, even in that funky backpack thing, if doing so makes you use more O2. You gotta roll with it, baby! Use a rolling backpack or crate. I happened to have a small rolling milk crate that I call my 'rolly-do,' that I have used in rehearsals for years. Turn out, it work for rehearsal crap AND mini tanks.
4) It is better to stay at a consistent level of oxygen use than to take it off for vanity or convenience or whatever, and then have to spike it up when you inevitably go low. Even if your O2 will go a little high, leave it on at a low level if you are likely to get up at any moment (like, uh, if you're directing a play).
5) Think of your O2 like any other bodily function. If you had to go to the bathroom, you would not stand around for 45 minutes shootin' the s"breeze." You'd excuse yourself, and come back after you p"used the bathroom." Treating the oxygen use like an extra special errand just makes it bigger than it is. It's as basic as your pee, gals. You gotta pee, and you gotta get a new tank sometimes.
6) Call your oxygen company for the item that far and wide seems to be referred to as "that water bubble thingy." It connects to your "oxygen maker" (can you tell I'm not a doctor) and puts some water into the line so you don't run dry air over the sinuses all night and day.
7) Turn down the A/C. It will dry out the house.
8) This is not O2 related, but do NOT skip a cup of coffee that you usually have because your head hurts. That is BAD BAD BAD for your brain. Your brain needs all the help it can get when there is a headache. Do not deny it the daily pleasures it desires. (In other words, quit coffee on purpose, on a different day than your O2 headache day).
Oh no! Pulmozyme done...I have more to write but must do it tomorrow!
In other news: If you wake up late on the day that you schedule a morning workout- you can do what I'm calling "The Morning Mini." A fifteen minute cardio where you stretch as usual, 3 minute warm up as usual, and then increase intensity in walking/biking/etc. as your O2 and heart-rate allow to try to get to max by 12 minutes in...hard to do, but possible. Then cool down, stretch as usual. Airway clearance awaits...
CRUCIAL RULE FOR THE MORNING MINI: This was not a real workout. You must work out FOR REAL later in the day.
I have been pretty down for the count these last two nights with the Trifecta of headaches:
Low Oxygen leading to Low O2 headache, leading to...
Lots of oxygen, causing very dry sinuses and THAT sort of O2 headache, leading to saline spray, tylenol and home remedies followed by a nap, leading to . . .
Sleeping through my 2nd daily cup of coffee, which all creates . . .
The low O2, dehydration, caffeine headache.
Horrible.
CG needs oxygen tips.
When your need for oxygen goes up, how to avoid running out of oxygen while AT work?
When your oxygen goes low, to bring it up gradually on low Liter volume, or blast it up with 3 or 4 Liters?
When your nose and sinuses are dry, best solutions? What's the AC got to do with it? Should I just turn the darn things off?
Should you take meds for the headache? Or does that make the dryness worse?
How does caffeine play into all this?
Holy poops I need some advice!! Please feel free to pass this on. I've been in the bed blinded with headache two nights in a row after two intense days at work where I was fine fine fine until I had to get up and find my way to my car :(
Quick post tonight because I'm tired and just got home from a CFF fundraiser, which was fun but loud (dance party).
Update regarding morning exercise. So far, going well. Today not as good as yesterday, in that I had to stop half way through for some serious mucus production. ICK. Sorry. Did I forget to mention that you shouldn't read anything about CF if you aren't comfortable with the word MUCUS? ICK. Thus, I say, YUCKIE.
EDIT:
"Update regarding morning exercise. So far, going well. Today not as good as yesterday, in that I had to stop half way through for some serious Yuckie."
Yuckies lasted about ten minutes but boy that stuff can move. So that's good. I finished off at 20 minutes walking, only 45 seconds running which had marginal success, and at 4L of oxygen. I did not experience the same hunger which I did yesterday, but all the same nausea. :(
Tomorrow, I will go to 25 minutes walking, stick to 45 seconds running, increase to 4.5L of O2 and hope that the Yuckies can wait til the end of the workout. And yes, I do some Yuckie clearance before I work out.
Goodnight y'all. May the Yuckies stay away from you. CG
Some of my bloggies emailed and said, (paraphrasing them all together in a lump), "Hey, CG, that was a great email you sent to your long-time colleague about your recent health changes. How do you word it when you write a letter or email at a new job?"
These inquiries made me think that I could help some bloggies out and just post my version of a a formal disclosure letter. This is the letter that I give to my new bosses, AFTER I have started work, but BEFORE anything could come up related to my health that could require an accommodation.
This window of time is smaller than most people assume that it is. Any person, of course, could find himself in a health-related emergency shortly after starting a new job. A person with CF, however, is at a much higher risk of facing a health-related emergency or a need for accommodation shortly after starting a new job. You don't want to wake up two weeks into a new job (a stressful time, might I add) and realize you have spiked a fever and BOOM! You're out for just 4 or 5 days, at home, sick, and worrying about giving a bad impression to boot! No need for it.
It is better to communicate early on in the work relationship, so that minor accommodations can be made to protect your health without seeming like a nagging new employee. Major changes in your physical health can be discussed if they arise, without the added stress of having the initial conversations about CF in general.
In any event, it is always important to protect your employment rights in disclosing your health information. You should allow yourself time to craft a letter carefully and honestly, and consult with resources on disability and labor law, to guide your sweet verbage.
Here is my letter. Feel free to use any wording from it in your own private letters. (But don't repost or publish). Thanks!
Place That Hired You, Awesome Institution Awesome Road.
City, State 12345-2345
ATTN: HR Personnel; Health-Related Personnel; your direct supervisor; any person you want to tell.
Dear Colleagues:
I am writing to inform you of a medical condition I have that may affect my employment.I have Cystic Fibrosis, a genetic disease affecting primarily the respiratory and digestive systems.Having dealt with Cystic Fibrosis since birth, informing school teachers, college professors, employers and colleagues, I am very comfortable talking about it and its affect on my life and employment.I have also found it helpful to provide a little background information on Cystic Fibrosis in order to contextualize our conversation:
What Is Cystic Fibrosis?
*from cff.org, The Cystic Fibrosis Foundation. (2006)
Cystic fibrosis (CF) is a genetic disease affecting approximately 30,000 children and adults in the U.S.A defective gene causes stress to primarily the respiratory and digestive systems of the body. People with CF have a variety of symptoms including: persistent coughing, wheezing or shortness of breath; and an excessive appetite but poor weight gain. Symptoms vary from person to person due, in part, to the more than 1,000 mutations of the CF gene.The treatment of CF depends upon the stage of the disease and the organs involved. Adults, however, may experience additional health challenges including CF-related diabetes. [. . . ]
It is important to note that though the symptoms of CF present as respiratory illness, no aspect of CF is contagious.
Cystic Fibrosis is recognized by the Americans with Disabilities Act and I may, at a future date, request accommodations which would allow me to better complete the vital functions of my job.However, at this time I do not need accommodations in my employment. If you have any concerns, please do not hesitate to contact me directly.There are a myriad of healthful resources online, one in particular titled [GIVE THEM A LINK TO MORE USEFUL INFORMATION THAT PERTAINS TO YOUR JOB, IF AVAILABLE]. This online document provides some helpful information specific to our workplace.
For the protection of my own privacy, I ask that you not share this information with other employees without speaking to me. Thank you!
Sincerely,
Cystic Gal
[Sometimes I include a statement here asking them not to include health-related records in my HR file, and not to create electronic copies of this disclosure. This is up to you. I don't want my CF disclosure to be inadvertently emailed or faxed to a new potential employer ten years from now, when they check references. This would also depend on your line of work and industry.]
I hope this helps! Let me know if you have any questions.
In other news! My morning routine went great. I walked at 2.8mph for 20 mins and ran for 30 seconds with the O2 cannula in my mouth. Highly successful! More minutes, more running, tomorrow a.m. On eating, I did not successfully eat breakfast. I was nauseous and tried to eat and it did not work out (that's all I'll say). BUT I was wicked hungry about 9:00 AM which is earlier than I usually eat, so my overall calorie intake today had to be higher. I ate earlier and thus, more often. I don't stop after I start :)
p.s. I found this image just googling "metaphor car lungs images"-weird huh?
Note to Readers: I'm a post ahead of myself so this is the Wednesday night post. It went up, unedited, last night on accident :)
Tonight, I wrote this to my longtime colleague regarding our current project and her worries that my work is getting too intense, as hers is getting less intense while she deals with family health issues that are pressing. I share it with you because:
a) it contains the metaphor dujour
b) it is a good sample, i think, of how to articulate quickly why I want to work as much as I can work right now
c) it's a good reminder that within whatever a CFer deals with, s/he must also remember that personal challenges surround us. We can do for others what we need done for us.
d) It shows that in a short time, one can become comfortable with something that once seemed insurmountable, as I have become comfortable wearing oxygen in front of my students when I need to.
Here goes . . .
"L--,thanks for this message and we'll talk (hopefully) more tomorrow. On my health issues- the only thing I'm really having trouble with is sustained cardio like walks, when I have to wear my oxygen, and mornings are sort of rough because of the oxygen issues. Other than that, I am really in good health and spirits and being active is the best thing for me (and my spiritual health/mind) right now. So I love that I'm able to help you with this project, seriously. Also, now that I have my Handicapped parking, my entire day has gotten a lot easier.
[I wish I had applied for it when my sister told me to, a year ago!]
I think of my lungs like an old car. They can go on lots of short drives but when they go on a road trip, they are in trouble until they make it to the shop. The oxygen is the shop :)
I am fine with regular activities and even being very active in class and rehearsal, but long bouts of formal exercise are what wear me out, and I need to use the oxygen to keep from feeling very fatigued. With our teens, in particular, I would not hesitate to wear it in rehearsal if I need it. They really don't care. Some of the kids we will have, have already seen it at other rehearsals around town. I'll wear it if I need it, and when I wear it, I can do whatever I want. It's really a great freedom for me.
I'm more used to this now because it has been this way since the winter, and even worse since about May. I don't really know what my year ahead holds, but I could be in this sort of state for a few years even, so I want to make sure that I'm being as active as I can not only because it's the best for me, but it is also the best for my lungs. :)
Let's talk more and just know that the [artistic institution I work for] family will rise up to meet you if an emergency arises or if you are behind in the planning. We are a teaching artist ensemble! We should practice what we preach. :) I am honored to do whatever I can, that you need. Seriously."
Feel free to use these words (or your edited ones) in an email to your colleagues when they say,
"I feel like you're doing too much."
and you read or hear
"Stop doing what you love."
Because I know, that can be a hard conversation to enter.
Okay. So the other day I had the idea that I could write my book about CF and actually use the lyrics to the song "The Gambler" as the names of the chapters. This was the day that I wrote "Know When To Walk (away), Know When to . . . Walk."
So anyway, that's my silly idea of the day. That and the long joking conversation I had with Cystic Lady, my sister, about starting a family with another bloggy CFer. She and I were joking about marrying another CFer (which others have done, I knew a couple of couples growing up in UNDISCLOSED CITY, USA), and having babies. We were imagining the headlines, and articles:
Couple with CF Takes Advocacy To New Level: "We want a whole CF family!" says Cystic Gal. Ms. Gal married Cystic Homie at the age of 29, when they met and fell in love over blog.
They've Gone Too Far! A couple with Cystic Fibrosis says they plan to have 19 children and star in a reality show called "19 CFers and coughing," to increase awareness of the disease. Though every single one of the babies will be artificially conceived, due to the couples inherent fertility issues, the Fibrosises say they'r ready for the challenge! "We've lived through worse!" says Mister Fibrosis.
(the rest of the jokes got kinda shady so I won't post them here.)
Anyway, y'all that have been reading my Exercise Trackermight be wondering how I'm feeling. Just the same as yesterday. Having a bad time over here on Anywhere Street, USA. I'm at a point with my O2 saturation that is really frustrating, that has happened to me before. My resting O2 is really low without any supplemental O2, but then I wear just .5 or 1L, and it's great! 93! Conversely, I can have it cranked up to 4L and be doing some minor exertion, and be struggling to maintain a decent SAT. Cystic Lady talked me through some possibilities for helping with the oxygen conserver that I use during the day:
DID YOU KNOW YOU CAN PUT THE CANULA IN YOUR MOUTH? My recent tweeting investigation tells me that all the CFers with O2 knew this! I did NOT know. I will try it tomorrow!
DID YOU KNOW THAT ANEMIA CAN MAKE YOUR SATs DROP? Every month I go through this and my sister has to remind me to take some iron!
DID YOU KNOW THAT BEING IN A BAD MOOD ONE NIGHT IS A SURE FIRE WAY TO BE IN A BETTER MOOD THE NEXT? Oh wait, maybe that's just me.
Goodnight to y'all and a shout-out to all my homies in the lockdown ;) HA! I've always wanted to say that.
That, and "Pour one out for the homies." Though in this case, I'd have to pour out an Ensure while I said it.
CysticGalon grey's tonight george o'malley died, donated lungs to patient with #cysticfibrosis. (fictional). Hard to watch with my pal, but good 2 c.
