January 2012
9 posts
Full speed ahead
First, I persuaded the prescription plan people to obtain my “doctor’s preauthorization” for me. Apparently being disgruntled has its perks because the medication was approved in less than 24 hours (huzzah!) compared to the typical 7-10 days I’ve experienced in the past.
The next few days are jam-packed:
-Tomorrow I have an appt with the doctor that makes me so anxious...
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The maze of prescription plans
Magically my “doctor’s preauthorization” for one of my medications expired long before the actual prescription. Being as it is, my insurance company makes me jump through an inordinate amount of hoops to get this medication (Dexilant, my proton pump inhibitor for acid reflux). Not only are there a lot of hoops, but after I clear a hoop, the only way I find out there’s...
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A fun day at work
Today has been the most fun day at work in quite awhile. For my newer readers, I work at a multi-user analytical facility at a large research university. We have lots of fancy, expensive “science machines” (microscopes and spectrometers) that engineering and science students use (kind of like CSI, but not really).
Today’s highlights include:
-Some sales guys are visiting our...
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Things I've learned in the past week
-I’ve realized that normally (and without a lot of conscious effort) I do excellent and effective airway clearance by using my vest and coughing when I need to. Having stopped for 3.5 days due to hemoptysis and trying to not cough much during those days (for fear of bleeding again), my lungs got really junky. Also my ER chest X-ray looked totally clear. Patting myself on the back for my...
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Vacation uniform (a.k.a. pajamas)
The last two days I’ve donned my “vacation uniform” as an encore to my 10 day Christmas break, because I should take it easy—what with my bleeding lungs and all.
They are still bleeding a bit. I wonder how long this takes to stop for most people with CF? It’s been nearly 48 hours since it started. Granted, this time it was mouthful after mouthful of liquidy blood rather...
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Back home
My lungs sounded a little gurgly but my X-ray was fine. The ER doctor talked to my CF doctor on the phone and made an action plan, which is…
Wait and see.
Seems like the bleeding is stopping/clotting. They sent me home with another antibiotic prescription and a cough suppressant (hydrocodone) because the likely cause was excessive coughing (which I had been doing all day and what woke me from...
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Top 5 things I miss from my 10 day Christmas...
1. Sleeping
2. Reading
3. Eating
4. 24/7 Matt
5. Wearing my pajamas
December 2011
14 posts
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Merry 3rd day of Christmas
Wishing all my internet friends a belated merry Christmas. I’ve been rather “unplugged” the past few days, not because I’ve been in remote, wifi-less locations, but because I’ve been busy with family and relaxing.
A summary of our exploits:
-Last day of work was last Thursday. My family came to visit that night, intending to stay til Saturday morning. But my dad...
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Conversation over coffee this morning
Me: Did you leave me any more notes with invisible ink in the kitchen?
Husband: No, but I heard you checking yesterday.
[…with the UV light on the Doctor Who sonic screwdriver I got him for Christmas, complete with sound effects.]
s0meth1ngunpred1ctable asked: i also have CF :)
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Finally
Good news: there is no more blood and very little sputum. It waned sometime between Saturday and today, thanks to my antibiotics (Bactrim DS).
I took a sick day from work yesterday and stayed home resting (and reading, watching netflix, playing video games and sewing) and waiting to hear back from my CF doctor about what to do—expecting her to say I need IVs. (I even packed my stuff in case I...
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Feeling kind of in limbo
Well, I haven’t sprang a bloody leak in my lungs in about 20 hours. I am trying not to cough (hard when you have CF), but the little bit that I can’t help is bringing up mucus + coagulated blood. Not a lot. Just a bit. The same amount as when I was at the ER last night. I was kind of hoping it would quit altogether overnight.
Last night I spent the evening like a normal person by...
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Murphy's Law of Cystic Fibrosis 2
If you have recurrent and worse symptoms and decide that being admitted to the hospital is unavoidable so you pack EVERY SINGLE MEDICATION you take, nebulizers, vest, a few changes of pajamas AND your toothbrush to take with you to the ER, you are guaranteed to be diagnosed as healthy as a horse with X-rays that not only don’t show fluid (blood) pooling in your lungs but also don’t...
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Murphy's Law of Cystic Fibrosis
You will cough up blood only in the following situations:
1. On the weekend when you can’t call your CF clinic and speak to someone immediately.
2. Really late at night when you can’t call your CF clinic and speak to someone immediately.
3. When you’re about to walk out of the door to go out of town.
4. Any combination of the above.
Today is a combo of #1 and #3. I...
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r0cks-ma-s0cks asked: love the blog title. my sister loves it. she eats salt like she drinks water :)
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The Big Three-Oh
Today I am 30 years old. It is with a tinge of sadness that I leave my 20s behind, but I’m hoping this next decade will be my happiest, healthiest and favorite yet. (There’s a good chance of it with my all-time #1 favorite person by my side.)
I’ve used the month leading up to today to list 30 things about myself that I love and that make me me. They have been 30 things meant ...
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6 (or 5) DAYS TIL 30
(Somehow I am a day behind…)
In the last 30 years I’m proud of/grateful for: my memory.
I have a really good memory and that is the sole reason I’ve ever experienced any scholastic success in my life. (It certainly wasn’t due to study skills.)
I’m good at memorizing, learning and remembering things I look at, but not as good if I hear them. I’m a very visual...
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3 DAYS TIL 30
In the last 30 years I’m proud of/grateful for: I like to help people.
I enjoy helping people. I haven’t always. I think it’s something I’m still learning. By nature I think I’m a selfish person but I’ve been trying little by little to improve upon that. I admire those who are innately selfless and don’thgave to think about trying to do nice things for...
November 2011
29 posts
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7 DAYS TIL 30
In the last 30 years I’m proud of/grateful for: my feelings of love and attachment for my dog-daughters.
Matt and I call them dog-daughters because they are our “children.” Today Sadie got a bath and haircut at the groomers and I missed her and worried about her an excessive amount while she was gone. There was just something missing at home while she was gone. My worries...
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8 DAYS TIL 30
In the last 30 years I’m proud of/grateful for: my body.
I think it’s fabulous in both form and function. I appreciate it for what it does and how reliable it’s generally been for 30 years. I’m hoping I can love it and take care of it for the next 30 years so it can continue to be just as fabulous.
How I celebrated: I rode the stationary bike for 10 minutes and then...
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9 DAYS TIL 30
In the last 30 years I’m proud of/grateful for: the means and knowledge to take care of my health.
Cystic fibrosis is a complicated and expensive disease. I’m glad I have the educational background to understand what it does to my body and a job that doesn’t make it a financial burden.
I don’t understand everything about it and I know I’ll never be able to...
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10 DAYS TIL 30
In the last 30 years I’m proud of/grateful for: trying to be a go-with-the-flow person.
I’m not perfect at and I’m fairly sure I haven’t been go-with-the-flow my whole life, but I’ve discovered as an adult that it’s particularly helpful to have this mindset at family gatherings at holidays, especially when you’re married and need to share time with both...
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12 DAYS TIL 30
In the last 30 years I’m proud of grateful for: my ability to make good choices.
On Tuesday I made a big life decision, which I will be vague about because it doesn’t need to be shared here. I’m proud that I took the time to think about it objectively, ask for advice, weigh the pros and cons, then consult my gut and think about what it is that I truly want. I have no regrets...
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13 DAYS TIL 30
In the last 30 years I’m proud of/grateful for: my first instinct is always to look for the best in people.
This goes with being an optimistic person, but I truly do look for good and always assume the best of people until they give me reason to think otherwise. Sometimes I’m disappointed (in college I was disappointed a lot), but I feel like the majority of time this outlook serves...
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16 DAYS TIL 30
In the last 30 years I’m proud of/grateful for: my self-sufficiency and independence.
I have to give a lot of credit for this to my parents, who raised me to be in charge of and responsible for my CF care since I was a child. I began swallowing my own enzymes at 4 years old, then preparing my mealtime medication on my own in first grade. I started preparing and cleaning all my nebulizers...
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17 DAYS TIL 30
In the last 30 years I’m proud of/grateful for: the ability to understand and listen to what my body needs.
With a chronic illness, this is very important because I can go from not feeling great to feeling really awful in a short time if I don’t back off the stressors in my life, like staying up too late, over-exerting myself working out, not eating enough or as frequently as I need...
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18 DAYS TIL 30
In the last 30 years I’m proud of/grateful for: my social abilities.
Hear me out. I’m not the kind of person that works the room at a party. I’d prefer to just visit quietly and not look awkward/lonely/friendless. But, I’ve developed a requisite level of professional social skills that make me not feel awkward/uncomfortable in professional social situations…like say, the...
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19 DAYS TIL 30
In the last 30 years I’m proud of/grateful for: my troubleshooting skills.
I use them all the time at work because any form of technology is bound to break down or have a hiccup every once in awhile. In the case of my job, I’ll have a smooth month and then all the science machines will rebel at once.
Examples of the problem solving I did at work on Tuesday:
-Filled two 17...
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20 DAYS TIL 30
In the last 30 years I’m proud of/grateful for: my appreciation of creative means if story telling.
By this I mean telling a story in an unexpected way. This includes books or movies written in an unconventional style or about something I’m caused to think about in a new way. But two forms of creative story telling which I have a great appreciation for and really enjoy are serial...
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21 DAYS TIL 30
In the last 30 years I’m proud of/grateful for: the means, energy and time to have hobbies.
I’m glad my lifestyle doesn’t leave me without time to myself to do something I enjoy, like exercise, watch tv, sew, have books read to me via my iPod, etc. It keeps me sane and gives me something to look forward to at the end of the work day.
How I celebrated: on Sunday alone, I did...
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22 DAYS TIL 30
In the last 30 years I’m proud of/grateful for: my cultural experiences.
By this I mean my privilege to experience cultures other than my own. In college, I had a lot of friends and teammates who were international students and in my very limited travels “away” to college (25 miles from home), I got a taste of life through their eyes—their language, music, food, pop culture,...
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23 DAYS TIL 30
In the last 30 years I’m proud of/grateful for: my optimistic attitude.
This may not come through on this blog because I often use it as a way to emotionally vent or give updates on the progress of my disease (which naturally progresses in the negative direction). However, I’m a glass half full kind of person—the type that assumes the best outcome until given reason to doubt....
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25 DAYS TIL 30
In the last 30 years I’m proud of/grateful for: my drive and perseverance towards achieving a goal.
I’d have to say this is one of my most treasured traits. I set high but generally reasonable goals for myself. Yes, I often fail, but as cliche as it sounds, I’m a better person for having tried. Some goals I’ve achieved that I’m proud of:
-I was salutatorian of my...
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27 DAYS TIL 30
In the last 30 years I’m proud of/grateful for: my lungs.
Sure, they’re not perfect. My life would be very different if they were. But in spite of their inherent flaws, I’m doing the best I can with them. Doing as much as I can with them. I’ve played countless sports in my life and enjoy pushing my lungs to their limit through exercise. And while I can’t push them...
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Blood sugar & inhaled steroids
I think my nebulized steroid is wigging out my blood sugar. I wonder if anyone else has experienced this. I kind of thought this only happened with oral steroids.
When I wake up in the morning, I have to make myself eat because I kind of feel a bit nauseous, but I know if I don’t eat that I’ll have a horrific blood crash mid morning.
So I eat my normal breakfast which in the past...
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