Why I Blog

I started working on this post a while ago and this week - when I am feeling absolutely uninspired for anything interesting or positive to write about - is the perfect time to dust it off and finish it up.

I first started blogging in 2004 on a cf forum I used to frequent. I stayed with it fairly regularly but then in 2007, I started a blog called Green Sense to write about various environmental topics. Check out my first post! However, I found that the kind of fact-based, well-researched and argued posts I wanted to create were extremely time consuming. As such, I could never find the time (or never made the time) and the blog didn't last.

A couple of years later, I started another cf-centric blog called Highly Evolved Genetic Mutant. I kept that up for about a half of a year before it fizzled out - it's an easy thing to have happen with a blog! In December of that year, I lost a very good friend to cystic fibrosis. It made me want to not write about health stuff (part of why the aforementioned blog fizzled out) so I started another blog a few months later called Catboogie's Dream to write about yoga, soap making and other things - that blog was subsequently was renamed the L Word, what you are reading right now. The L Word has, because of life circumstances, now come back to being primarily health-centered. However that may not always be so!

As much as the idea of a health-centered blog makes me cringe (trust me, I know there are a lot of bad health blogs out there) I have been determined to keep my blog going in a way that is interesting to people with and without CF. I have many reasons why I blog and I thought it would be fun to share them with you.

1. To keep my sanity - it makes me feel better and helps me to organize my thoughts. I have a logical, writer's brain - enough said.
2. To keep people informed of what's going on - I am always forthcoming about my health issues and my blog is no different. However, I know that not everyone deals with hearing about other peoples' health problems the same way. It makes some people uncomfortable to ask me how I've been doing, but I know that they do care and want to know. Blogging is a way for people to have the information without having to ask me. Also, blogging allows people to follow what's going on with me so that I'm not repeating the same conversation (and let's face it, it's not the most uplifting of subjects to constantly rehash) over and over again when I see them.
   
   BUT, I never want my blog to read like a play-by-play. I try very hard to stay on a topic and do a lot of self-editing so that I am not telling all of the dirty details. That's right, there's even more fun going on in my life at a given time than you read about - imagine that!
   
   
3. To stay in practice - I am first and foremost a writer. My brother was/is a writer, my dad was/is a writer - it clearly runs in the family. Since I left my job at the end of last year, I wanted to keep writing on a regular basis. My blog became part of my current "job" of keeping up my health and sanity.
4. Because I enjoy it - I really like writing. It gives me a huge sense of accomplishment. There's something that happens during the writing of a good composition that is comparable to a runner's high: you work and work and then you just sail. The result? At the end of almost every blog post, I feel I am putting forth an informative, heart-felt contribution to the world - hopefully with some light-heartedness mixed in. It is always something I am proud to have written.
   
   
   
5. For my community and for the spectators - A decade ago is when I first discovered the online CF community and started making friends. After having lived my life with very little one-on-one interaction with other cystics, it's safe to say that I really took to it and have never looked back!
   
   At that time - way before transplant was something I even thought about in any kind of a realistic way - I started following some peoples' blogs or stories online and that included people who were at various stages of the transplant process. It was fascinating to me in a way that was also completely terrifying. Looking back, I think it was a way that I could sort of begin to imagine what transplant might look like for myself but viewed from the comfort of my life with high pulmonary function.
   
   Now that I am to the point of transplant, I want to be informative not only to my family, friends and fellow cystics but also to people I don't even know. To have a moment where someone on the other end of the internet says something that totally resonates with you is a very profound thing. I hope my experience can in some way be helpful to others.

Addendum: What Makes a Good Blog?

Since I've been thinking about why I blog and that I think my blog's pretty good, naturally a list began to form in my head of what kind of things make a good blog. Here's what I came up with:

• Practice - read a lot of other blogs and be willing to accept feedback/constructive criticism
• High standards - write, rewrite and edited
• Visual appeal - spend time finding the right photos for each post; break text down into manageable sized paragraphs
• Regular updating - often but not too often
• Speak from the heart, avoid cliches - make it personal but not too personal; do not post anything too impulsively that you may regret
• Leave others out - not everyone around you wants to be in your blog (doctors, for example); be respectful and use trash talking only when absolutely necessary
• Know your audience - in my case, I have to balance my medical jargon for both CF and non-CF people
• Write about something people care about - a good topic will often be something that people can relate to even though it pertains to your very specific situation (If you want to tell people what you had for breakfast, lunch, and dinner, use facebook.)

Photos: Nothing to Say, paintermommy.com; Chickens, savagechickens.com; Dogs, thepathlesstaken7.blogspot.com; Dog Blogging, wronghands1.wordpress.com; Snake Blogging, cartoonstock.com; Still Going to Ignore You, lizhover.com.

Snapshot

I had another blog planned out for the day but I was just sitting here thinking, I wonder what it would look like to walk around the house and take pictures of what my life looks like right now. I tried to leave things as close to how they already were as possible - so it ain't all gonna be pretty folks. Here goes!

My throne! Nice of Todd to relinquish it to me. :) Notice water bottle and hand sanitizer in close reach.

A tank (and carrier) for every occasion!

Brownie love...these represent not only what my awesome friends are doing for me (thank you Sandy!) but also that I am eating lots of junk food these days under the guise of wanting to gain weight for surgery.

Our NA beers of choice, respectively.

Protein shakes! I drink one a day.

The constant motor loudness from the oxygen concentrator is something we've learned to live with.

Sigh...this represents things I am missing out on. Todd has been downtown listening to bluegrass music without me the last five days.

This represents the extra time (and inclination) I've had to purge and organize our house. Before, the bunny stuff was all kept here.

It's all bath or all sink bath for me! This cup is for washing my hair.

Magazines waiting for Aunt Jane! She and Aunt Martha are planning to come up for my surgery and to help out afterward.

The ugly box of IV supplies in the corner of my office...at least I have it confined to one box! That is no easy feat.

My secondary transplant bag - things to bring once I'm in step down - wonderfully soft sheets (thank you Sheila!!), my diabetes pump supplies and pajamas.

Never enough pillows for sleeping these days! And of course I had to include a cat in one of these pictures.

My night time ritual

Sinus rinses...every day.

One of several shelves of pills.

Counter top stuff: on the left, my next two IV doses warming up, a big bottle of (the most amazing in the entire world, EO lavender-scented) hand sanitizer, my current antibiotics and pain meds.

Recycling says, "Todd, please take me out to the big recycle bin so we can be with our friends!" (Note protein shakes and Starbucks cups.)

An empty calendar, just for drama. No plans!!!

A Rough Time

This is not going to be a happy blog post. Last week was a very bad week.

I had not been doing well mentally going into it - having a hard time with all of the new changes in my life (not working and getting sicker.) Then Todd left for a week, my Aunt died, I was hosting a bachelorette party at the end of the week three plus hours away. Then I came down with some kind of body ache/fevery virus for two days (less than a week after coming off IVs) during which I felt absolutely miserable. To top it all off, my blood sugars were running in the 300-400s because of problems with my pump. It was one of the lowest times in my life.

But, I trudged forward. I don't mean this in an 'aren't I amazing' kind of way but rather a 'I was so lost and downtrodden that I had no idea what else to do other than attempt to put one foot in front of the other' way.

Fortunately, my fevers broke, I started feeling better, I upped my antidepressants, I got tested and was once again negative for the flu, I said to hell with my pump and switched back to shots ... and I made it to the mountains for the weekend, which was a great success and a lot of fun.

But the best part, honestly, was coming home from the mountains to Todd. Problems don't get solved or go away when you can talk to someone you love and trust so much, but they do become something that seems somehow more manageable. Plus, you know how sometimes being able to say something out loud makes it less scary? I felt like that, too.

My moment of truth

My breathing has not been great. And I knew it was going to be even more of a challenge with the altitude of the mountains. It makes a BIG difference. I was running my oxygen basically at full blast up there (5 liters) and still not able to do a whole lot without de-satting. I took a shower and my sats went down to 80 - that's the lowest I've ever seen them at. I really had to go slow and pace myself - I felt the life of a very sick person had suddenly been thrust upon me.

When I was driving home, it hit me: my lungs are failing. They are getting worse and worse, a little at a time. I'm not trying to be negative, it's just something I feel. And the worse my lungs are, the bigger the small changes feel.

I'm scared. I'm not ready to die - who ever is. And it struck me that my brain could be so alive and yet my lungs on their way out...but I guess that is how a body works. It goes until the weakest part fails and then the rest is forced to follow suit. As intellectually puzzling as it feels, it is the way of the world.

So two things are happening. I am trying to reassure my ego with my zen self that this whole process is okay...I don't want to waste any more time or energy - precious energy! - than necessary fighting the inevitable. On the other hand, I want to continue to be the realistic, proactive patient that I am and get to Duke for transplant work-up before it's too late.

This week ends three months of my short-term disability. I can't express how frustrated I am with where I am at, with my lack of improvement. But at the end of the day I know that I have done everything I could have done that I am willing to do to get here. So I am okay with it.

Until later -

It helps having something to look forward to

In approximately three weeks, Todd and I are scheduled to leave for our excellent northern/western adventure driving to Cleveland, Michigan and Montana to visit family and vacation. We are planning to be gone for a total of three weeks, which makes it the longest vacation we will have ever had together!

Leading up to that, it has not been the easiest last couple of months with my back surgery and then getting a pretty severe lung exacerbation a couple of weeks after that. I have been on IV antibiotics for over two weeks now and while I have improved, I haven't improved tremendously.

I usually keep a fairly positive attitude about my health. But I have definitely struggled some the last couple of weeks. See, it is one thing to get sick, need time off work, have to go on IVs and have life disrupted for a couple of weeks. It is quite another to get sick, have your sats go so low and get short of breath just doing normal things, feel good enough to be working some but not be able to work enough to get everything done that you want to, feel like you are doing everything to get better only to see teeny tiny steps in the right direction. I guess what I'm describing is getting "CF sick" versus getting "super CF sick."

In my experience, getting super CF sick often involves oxygen, lots of antibiotics and a lot of time...as in months. Unfortunately, with this trip coming up, it's not the best time for my oxygen saturations to be running low (they are better than they were but still not really getting above the mid-90s consistently) since 1) being on vacation we like to do things like go out and hike, which requires exertion and 2) my sats run lower out west anyway because of the higher elevation.

I can make arrangements for oxygen, and we can probably figure out the antibiotic thing - if I still need to be on something, a combination of orals and inhaled would probably tie me over - but time is the tricky thing. I guess it wouldn't be the first time going on vacation when I wasn't feeling optimal. But I wish it was different.

All this is really to say that when I am sick - especially super CF sick - it helps having things like cool trips to look forward to. I feel fortunate that I have been able to do so much traveling because I know there will come a day when that is not possible. Sometimes I feel like Todd and I are foolish to plan so much. But what the hell. When you stop making plans, then what are you really waiting for?

Sometimes it doesn't pay to wait

My co-worker, Mike, and I at TNC's River Jam Tent at the US National Whitewater Center - June 2012

Hello loyal readers!

It has been some time since I felt inspired to write, and you know what that means. Time for a quick run-down of what has been going on!

The big(ish) news is that I am currently on a 2-week course of IV antibiotics. I had not been feeling spectacular for a while (more congested, coughing more than usual...) for a while, but I was totally hanging in thanks to exercising a lot and my trusty stop-coughing go-to pills, guaifenesen. The cards really started to fall the week that I had a grant writing workshop in Greensboro mid-June - I was feeling super tired and run-down. I got started on some oral antibiotics which worked really well for a week or so when I went to see my doctor.

At that time, my numbers were a hair below what they were last time, which was also a little lower than they had been the time before that. My real concerns were my energy dropping and also that I have two awesome vacations coming up that I want to be in tip-top shape for. So we went for the IV antibiotics. And I knew right away that I had made the right decision. (And, for the record, Todd knew like three weeks before then that it was time for IVs soon.)

The day after I started on them I felt really horrible: tired, achy, malaise, fever, no appetite. But since then, things have been going along pretty well. I haven't had any trouble with the Tobra (I had some tinnitus the last couple of times I was on it, which can correspond to hearing loss) except that they had to increase my dose because my levels were too low.

But the really weird thing about all of this? Unlike every other time I've been on IVs when I would totally beat myself up about missing work and always be trying to do more than I should, I have been totally enjoying my time off! I feel kind of guilty saying that. But who wouldn't love an unexpected 2-week vacation? Of course it's not all fun, but largely I have slowed down and taken time for myself to heal. And it feels really nice.

Image taken from sodahead.com

In other news:

• I am finished with my PT for my herniated disc/sciatica! And I leave there having a solid set of exercises that work really well to control my symptoms. Still have not gotten back to yoga - that is the next step. Also still doing monthly acupuncture and weekly massage (which is absolutely fantastically awesomely paid for by my insurance.)
• Todd's dad has been staying with us a lot lately - he is getting cancer treatment here in Raleigh and lives several hours away. He started chemo (for the second time) recently and he's having a bit of a rough time of it. His health has been really up and down, and it's hard on all of us. Especially him. All of us are focused on our trip to Montana right now.
• I got out with Elaine to sell some soap last First Friday! We sold it at a friend of our's bar. I know it sounds weird, it kind of is, but it's fun. 
• Super excited about going to the beach with my family during the third week of July. And also  for our Montana trip in August!
• Work is going really well. I have an intern! Who is both awesome and really talented. This is my first time really managing somebody and I really like it. Also, I was doing a bit of traveling in June and July - two trips to Charlotte and then Greensboro for the grant writing class. It was nice to get away.
• Probably not news to any of you that the weather here has been brutally hot! We just broke the record for the number of days in a row over 100. Between that and the holiday last week, it's as good a time as any to be missing work and just laying low at home.

Image taken from kbosweeney.wordpress.com

On hold

Gallstones can cause complications in the gallbladder, liver, pancrease, or the ducts around those organs - depending on where a stone gets lodged

It has been an event-filled week, without being busy. Why? Because I have had appointments and medication changes but haven't done much else - been focusing on me and what I need to do to get back to 100%.

When I wrote last Sunday, I was having a lot of issues with anxiety. It hasn't gone away completely, but it has been much better overall this week, and for that I am thankful. More on that in a minute.

I went to see the gallbladder surgeon on Monday. I talked a lot to both the doctor and the resident there, both of whom I liked decently. From their point of view it is pretty straight forward - they recommend surgery (laparoscopic) to everyone who has any kind of problem that they think likely related to sludge/stones in the gallbladder. So it didn't matter to them that my symptoms are "minor" - the only time they recommend pills (the only alternative treatment) to people for gall stones are if they are not strong enough to go through surgery.

But I became interested in the pills when I learned from a fellow cystic that she had been on the medicine (Actigall) for years and hadn't needed surgery. And I had learned from Dr. C, my CF doc, that many people with CF are on Actigall as a preventative (it's supposed to help break down stones and prevent new ones from forming.)

The drawbacks to Actigall, according to the surgeon, were 1) It's expensive 2) I'd likely have to be on it for the rest of my life. I guess surgery is supposed to seem like a piece of cake compared to these things?? For one, it's not expensive - it comes in generic and the full price for a 3-month supply was $170 (I paid $30). Secondly, has this guy seen my sheet of meds? It is literally almost an entire page of stuff...stuff that I will have to be on for the rest of my life.

So the surgeons did not convince me, at least not for now. I want to try the Actigall and see how it goes. (The surgeons weren't opposed to my proposed plan.) However, these guys did make me feel like I would be in good hands if things got worse - and they very well may - but there is just no way to tell. And I don't feel confident enough that they will to take the plunge into surgery now.

Whew! That is a load off my mind. I hope between the Actigall and some tweeks in my diet, I will be good to go.

Speaking of my mind... I went to see a psychiatrist on Wednesday. Throughout my life, starting in childhood, I have been to various councilors. But this was, I think, my first real deal shrink with a prescription pad! His name is Dr. M and he is retired from UNC in private practice. He seemed very laid back, level-headed, soft spoken. I told him about all that is going on in my life right now...I cried some...nothing abnormal.

When he was trying to determine whether or not I am depressed right now, the first thing he asked was how had I been sleeping? I laughed. Sleeping has been a complete debacle for the last two weeks in our house...I ended up on the couch about half the nights because I would wake up from Todd's snoring in the middle of the night and not be able to get back to sleep. One is NOT getting a good night's sleep if they are 1) waking up 2) laying there for an unspecified amount of time trying to fall back to sleep, all the while (sorry, Todd) cursing their snoring partner and 3) eventually having to go make up the couch to sleep on and reset a different alarm. So yeah, I failed that question. Or passed with flying colors, depending on your perspective.

How about my appetite? Meh - been terrible, but that's mostly because of the antibiotics, I think. Have I been crying more than usual? Uh, yes. I had a meltdown in the office of the new head of our department two days earlier (don't worry - it was totally fine, she is a very caring and understanding woman. But, it's evidence that I am really overwhelmed.)

I left Dr. M's office feeling a lightness that I hadn't felt for a while; and wondering why the hell I hadn't thought of going there sooner. I also left with three prescriptions - an antidepressant (Welbutrin, which I was on for a year about 7 years ago), a new med for anxiety (swapped out Valium for Xanex), and something to help me sleep (trazadone). So much starts with a good night's sleep - I have to get that under control for my brain to normalize again.

I started the Wellbutrin on Thursday and it's making me a little *nuts* (very speedy feeling during the day) - so far I've been able to deal with it, though. I know it will get better. And it hasn't led to any anxiety, thankfully. In fact, I've not used the Xanex except to help me get to sleep, so that is good. If you're wondering why I haven't been using the trazadone for sleep, it's because when I got home and looked it up, I found out it is an antidepressant that is used "off-label" for sleep. For some folks, it's a miracle drug - non habit forming, you can take it as needed, it's cheap. But I didn't want to throw that into the mix since I am already feeling odd with the Wellbutrin and still getting used to Xanex.

So that was basically my week - interspersed with waxing and waning on needing IVs or not. My lungs are still doing pretty well, but I had a couple of "yuck" days (no fevers, though) - but I began to wonder if I couldn't remedy that with some good nights of sleep and, frankly, being less depressed. So I push on...

Not so flying colors

An x-ray of a healthy set of lungs

I wish I could say that my one year anniversary since needing IV antibiotics (9-29-10) passed with flying colors. But unfortunately, this isn't the case.

Under one theory, the so-called "Montana cold" never really went away and is now causing me to need intervention. Under another, a series of other things converged to lead me to the same place. Either way, a couple weeks after all my viral symptoms were gone, I was feeling lousy in several ways (see my last blog) - the only exception being that my lungs felt fine.

Tired of not feeling myself, I contacted my doctor Sunday night and we arranged for me to come in Thursday to discuss my recent anxiety/depression and his thoughts on gallbladder surgery. Then, that night, I woke up at 6:30 am feeling like crap, with a fever and chills, and a pretty decent pain in my left upper lobe. I contacted Dr. C again Monday and he got me in this morning.

The verdict was mixed. PFTs were fine. (Sidenote: I expected this, but still, yay! After a month of hardly any exercise - first the cold and then "exercise time" turning into "nap time" - I was pretty psyched.) X-ray showed a spot of infection in my left upper lobe, where the pain had been. Let me say, things are not nearly always this neat when it comes to x-rays and symptoms. I have been on IVs before with a nearly normal x-ray. I could only wonder if the spot was there before the pain or vise versa. Because, really, my lungs have been totally fine lately.

Everything else (oxygen level, weight, etc.) was fine.

But, one plus one equals intervention: The x-ray/lung pain or the fatigue/malaise might not be enough on their own, but together, they spell antibiotics. IVs were discussed, although not necessarily recommended. Since my lung symptoms seemed under control (pain was much better today), we decided to do a tobi/mino/bactrum cocktail. (Tobi is inhaled Tobramycin twice per day and Minocycline and Bactrum are antibiotics which target the other major bug that I culture.)

In discussing the possibility of an antidepressant, Dr. C was quick to hand me off to a psychiatrist. He says he has a "low threshhold" for sending folks for referral because 1) talk therapy can be as effective as drugs with none of the side effects and 2) those people are much better versed in the nuances of the medications. (I only half believe that, knowing that much of the process of finding the right med is trial and error. But anyway...)

There was one positive development...switching gears here to the gallbladder issues. Thanks to my wonderful online CF forum, a drug called Actigall was suggested to me. This medicine is used to break down existing gallstones (or, in my case, hopefully, gall sludge) and also to prevent formation of new sludge/stones. One of my CF friends has been on it for years and has not needed other intervention. I hope this will be the case for me. Anyway, my GI doc approved it, and Dr. C wrote me a script, so I am anxious to give it a go.

Since it was obvious the gallbladder surgery had been weighing heavily on my mind, Dr. C suggested that I talk to a surgeon at UNC to see what they recommend based on my information. We agreed, the more information, the better to help me make this decision.

So I'm on this antibiotic cocktail starting tomorrow, and missing at least three days of work this week. I hope I start to feel better soon.

50!!

the eFlow nebulizer - fancy!

I hit 50 today (fev1) at CF clinic.* Yay! I was at 50 or slightly higher two times last year, and before that it was a couple of years since I had been that high. The true coolness to it is that I am continuing to go down on my Prednisone, which has inflated my numbers the last few years. I'm currently at 3mg/day, if that means anything to you, and hoping to be off it entirely at some point in the near future.

Other news from clinic: I may be switching from Zenpep, my current digestive enzyme, which I have been on for only a month. Let's just say it is slowing me down and I'm not as happy with it as I was my old Pancrease. I am trying a third enzyme now, Creon, which offers free vitamins. I hate to switch so much, especially when the reason for the initial switch was a pause in manufacturing of my old brand while it was rebranded, but it will be worth it to find something I am happy with.

I had to turn in all of my stuff from the aztreonam (an inhaled antibiotic) extended access program that I was on. I was sad about that because I am in the middle of a 28-day cycle of this drug, which I need three times daily, and I only have three nebulizers to do it in (whereas I had built up to nine with my new ones from the company plus my old ones from expanded access) - which means that I have to wash nebs every single day! That truly, truly sucks. One of the worst things about CF in a day-to-day sense is washing nebulizers. It is such a pain in the rear!

I continued to sing the praises of NAC, a supplement I've been on seriously for several months now, but my doctor is not as excited as I am about it. He wants to see the research done to prove that I am not just a fluke. But how can I be a fluke? People with CF don't just improve with nothing. In fact, even with the addition of therapies, they often continue a slow decline. Not only have my numbers gone up, and I have not been sick (plus other benefits I won't mention here,) but my Prednisone, as I said before, has continued to go down with few side effects. I have always had tremendous problems coming off Prednisone and it wasn't until the NAC that I was able to do it so smoothly.

Even though my doctor is a skeptic, he said that UNC might be interested in a simple research study with respect to NAC and me ... they would want me to drink it (like I do now) or inhale it (like is usually done for other conditions that use it) and then test how much is actually getting into my lungs. Sounds pretty painless and definitely for a good cause.

What else...oh yeah, did I mention that my fev1 was 50%??? :) :) :) Kind of makes up for all the other crap I've been dealing with lately.

*For those of you who don't know what this means, 70 or higher would usually be considered "mild" or, for me, low maintenance/low symptom CF; 30, on the other hand, is usually when you start to think about transplant.

R & R

Our new marbled bars

This weekend, after 808 Soap's monthly First Friday event, I had no plans. Surprising for me! Todd went to the mountains to visit his dad with the dogs. The kitties and I had a nice time by ourselves.

On Saturday, I went to my mom's pool, then was a little sluggish from the sun (I guess) at my yoga class. I went out with my mom for Indian food that evening. Today I slept in, ran a couple of errands, and then came home and did some stuff around the house. I even exercised on the elliptical machine. I also made several phone calls and caught up with out-of-town folks.

I am feeling better, mentally I mean. I have hardly had any abdominal pain since my GI appt last week. While I'm not convinced whatever it is has gone away, I do think it is at least not urgent, so that is good. My appt was kind of a flop. I didn't much like the doctor...I won't say more than afterward Todd said "it seemed like she kept forgetting you have CF." Yeah. That won't do. Also, she wanted to do an endoscopy, which I am not convinced is necessary. So I asked my CF doctor to refer me to another GI doctor at UNC, which is where all of my other doctors are. I am much more comfortable with that because if I do have to have any kind of procedure, everyone will be on the same page and my doctors will be the ones consulted if there are any issues.

In other news, my dad was discharged from the hospital on Tuesday and is doing better. My step mom also sounds better. That is a bit of a relief. I want to try to go up and see him sometime between when we get back from Montana (early Sept) and Thanksgiving, when I plan on going up there again.

And the consistent bright spot...my lungs continue to be really good. I don't feel like my PFTs accurately reflect how good I'm feeling. I have continued to go down on my Prednisone (I am at 3mg/day now) with no ill effects except for some pain while exercising today that I believe may be due to a little increased inflammation or my body getting used to this past taper. I know I wouldn't have been able to go down on Prednisone this easily without the NAC. Hurray!

Sunk

This post is kind of depressing, so I thought I would put a cute kitty picture at the top. This is Lucy lounging on a beach towel. Lucy lives at Todd's aunt's house at the beach - a house with no permanent residents. I think his aunt across the street feeds her. Lucy is like her mother - Chatterbox - who was also very vocal. I love her! She is my kitty at the beach. :)

Anyway, I've been a little depressed lately. That's really not like me, normally. But it makes sense - there has been a lot going on - and so I have just been letting myself feel it. I hate to act all put-upon, but I have kind of a lot going on with just my normal life, health-wise. How much can one person take? For the past week,it has felt like a sort of breaking point. I'm honestly not sure why, I know things could be way worse, but they are just really getting to me right now.

It's hard to say when it started, but I know that when I visited my dad in Cleveland there was a sadness there about my dad's health that hasn't been there before. It is so hard to watch your loved ones struggle. Shortly after that, we learned of - yet another - one of Todd's family members coming down with cancer. And it's bad: stage four, spread everywhere. It's so sad. With both Todd and I's dads recent health problems, and then hearing about Todd's cousin, when my gall bladder issues started happening, (and the sick kitty) it made it seem much worse than it ordinarily would.

There has been a bit of good news this week: Gus does seem to have responded to the antibiotics. And I had a hida scan to follow up from my ultrasound and it came back normal. That same night, while having a grilled cheese in celebration of my good test results, I had gall bladder pains again. So I'm not at all convinced I won't still have to have it out, although it's nice that it isn't urgent and/or incredibly painful. I'm going to ask to be referred to a GI doctor to discuss what all of this means.

And there was more sad news, too. This morning I found out that my dad had to go to the ER earlier this week because of another escalated panic attack. It doesn't sound as bad as the other times it has happened, but it scares the crap out of me.

Adding to my morning, Todd and I had a stupid argument last night (I'm sure my stress added to my irritability) - things are fine, now, it is very unusual for us to fight - but it left me feeling awful this morning. Must. Not. Fight. About. Dogs. Again.

So yeah...I've been better. Today I was so stressed I was actually feeling dizzy - not good.

However, I came home from work, took a nap, and then had a really enjoyable evening with several of my oldest Raleigh friends. It isn't all bad, I know.

Whirlwind

The last three weeks have been a whirlwind. The week after D.C., Todd and I drove up to see my dad in Cleveland for the 4th of July. We had a really great time visiting and also got to see some cool stuff including an Indians game, the Rock & Roll Hall of Fame and drive through an area outside the city that has a number of Amish folks living.

The highlight of the outings was either seeing the Amish in their horses and buggies or walking around in Johnny Cash's tour bus. Both very cool and amazing in their own way. But of course the real highlight of the trip was seeing my awesome family up there - including three little nieces who I adore.

About a week after getting home from there, I went to Asheville for a night for a work thing. Normally, I don't travel much for work. But this was something special. The Secretary of the Interior is holding 20 listening sessions (in between flying to the Gulf to oversee oil clean up and restoration - shows what a priority this is to them) around the country to get peoples' input on how to get young people more turned on to the outdoors. Obama announced this "America's Great Outdoors" initiative recently and the DOI is researching the subject and will compile it into a report for the president by the end of the year.

Ken Salazar was not there, but his chief of staff was - as was the head of the Fish & Wildlife Service. The event was called a "listening session" and was held at a community college. The auditorium held 400 people and it was basically full of conservation-minded folks from all over the state. The Washington folks were very impressed by our enthusiasm and by what we have managed to get accomplished here even during tough economic times.

At the listening session, after some short speeches, we were all assigned into rooms which held 10-20 participants and were asked to answer four questions as a sort of discussion. There was a moderator to keep on topic and a recorder who wrote down everything that everybody said. (This is what will be used to compile the report for the president.) We talked about obstacles to getting kids connected to the outdoors, what might be done and what the federal government can do to help the states.

There is more to tell, but that is the gist of it and so I will move on. Except I do want to say that I got the chance to stay with a very old friend who I hadn't seen in two years. She lives in West Asheville and I stayed at her house so we had time to catch up which was great.



I got home from the mountains Thursday night and turned around and went to the beach (Holden) Friday morning with a few of my girlfriends. Traveled from one end of the state to the other! We had a lot of fun. Got some good beach and pool time in without overdoing the sun. We cooked good food, drank and played games. Really enjoyed the relaxed pace of the weekend.

My other news is that I had some pains in my upper right abdomen last week and went to the doctor and got an ultra sound. It showed "suspicious globules" in my gallbladder. I think this means that I don't have stones but rather spots of sluggish bile which could become stones. My doctor ordered a hida scan - which is basically a more sophisticated scan done with dye to look at your gallbladder - to follow up on that. Depending on how that goes, they will refer me to a surgeon. I'm kind of nervous about that but trying to take it one step at a time.

My mom had her gallbladder removed when she was 30, but she was having a ton of pain. I have not had a ton of pain, thankfully. But I have since found out that it can be hereditary. Diabetes is also a risk factor. According to my CF doctor, it is not uncommon in CF, either.

I don't mean to jump the gun by thinking that I will need to get it removed, but I would be lying if I said I haven't been thinking about it a lot lately. I keep thinking that I have for the most part so far avoided GI issues so commonly associated with CF only to have this crop up and possibly make things "not right" forever. I read that you are supposed to eat a low fat diet after gall bladder removal. Are you kidding me? Life without cheese right now seems impossible.

One other thing: I have a semi-sick kitty in the house. My cat Gus has been acting sluggish a couple of times and then he will seem better; I've also noticed that he has lost weight so it was time to call the vet and schedule for him to come. Gus has an appointment for Thursday morning and I hope to get some answers. And I really really hope that the answers are not something horrible. Love my guy so much.

Drug Development Pipeline

This is something I like to take a look at from time to time - the drug development pipeline for CF medications. The two things that I am most interested in are VX-809 and TIP (Tobramycin Inhalation Powder). VX-809 is the "gene therapy" discussed in relation to CF (specifically for my mutation). It could be very very promising, but who knows how far off it is?

(From cff.org website)

Drug Development Pipeline

The Cystic Fibrosis Foundation has built a dynamic "pipeline" for the development of more new potential cystic fibrosis (CF) therapies than ever before. To treat a complex disease like CF, therapies must target problems in the airways and the digestive system.

In the CF drug development pipeline, there also are promising new therapies designed to rectify the cause of CF — a faulty gene and/or its faulty protein product.

Below is a "snapshot" of those potential CF therapies that are currently in development as of February 22, 2010.

A Musical Confession

Firstly, apologies for so much time passing since my last post. I really do think about writing on here often, but have to balance that with time issues and having worthy content.

I have been doing really well. ...mostly. Actually, the way last week ended, I was thinking I might be headed for IVs, and I was going to take the weekend to rest up and see if I could recharge or if my fate was indeed sealed. During my fairly strenuous Saturday yoga class, I had a new experience - and I ain't talkin' enlightenment, baby! Rather, I coughed up a bit of blood during a sequence that involved a lot of bending over. I realize this might sound horrific to some of you. But it's not all that uncommon in CF.

The trick with hemo, as it's called, (short for hemoptysis) is to know whether the trigger (being in a smokey bar, say, or in this case bending over - which causes a rapid change in blood pressure), is something that just happens to annoy your lungs on that particular day or if it is a sign of infection. Mostly, the latter is true. However, there are some lucky folks who just bleed from time to time. While I thought the incident meant I was headed for IVs, since I was feeling well otherwise, my doctor and I decided to wait a few days and see how things went. And I've been back to normal, which is awesome.

Onto the topic of my post: music. A short musical history of my life would go something like this: The Police were the first band I ever fell in love with their music (thanks to my dad); high school I struggled to steer clear of the hippie music all around me, started listening to Nirvana, REM, U2 and stuff that sounds good when you're high; college brought some branching out, started liking a little jazz, got into Red Hot Chili Peppers, Foo Fighters, Ben Harper (!). In other words, I've been pretty main stream for much of my life.

Another confession: For many years, I had an addiction to shitty radio. Yes, shitty - top 40, one hit wonder, destined for a compilation of songs to one day be sold on a late night infomercial (and yes, I did think about buying one of those too!)

Now that we have that out of the way, I want to say that I have never, ever, with the exception of John Mayer, bought any of the shitty stuff I heard on the radio. I knew that it wasn't good music, but rather just something catchy to listen to and think about how that does kinda sound like that one guy you used to date. Ahh... isn't life funny like that.

Now, fast forward to last December. The CD player in my car had been broken for over two years, and when I was looking for a replacement it ocurred to me that I might like to get satellite radio. Todd was definitely into the idea (hoping also, no doubt, that my taste in music would improve with exposure to more than just my AM/FM radio). So I got Sirius radio. This was pretty much the beginning.

At first, I didn't listen to it much. I couldn't figure out my new radio, and besides, I had a lot of catching up to do on listening to all my CDs. But after a while, I started listening to a couple of stations. And I became interested in some of the bands, looked them up online. I'd go to Amazon and listen to samples of their albums. Then I discovered Pandora and, like its name suggests, things pretty much exploded.

I've been to the local music store three times in the last few weeks. I love browsing the used CDs section - I really hate paying full price for music unless it's something I know I'm really going to like. And I like the thrill of the hunt, and the randomness of what you can come across. It's like this whole thing I'd forgotten about - the total high that comes from finding an album you love, playing it over and over and over, and wanting to share it with everyone you know. There are all these amazing bands I've been missing out on! I have a lot to catch up on.

Clinic

The PFT (pulmonary function test) machine

I had a very busy CF clinic visit last Thursday. All in all I have been feeling incredible lately. I feel slightly less good than I did a couple of weeks ago when I last lowered my Prednisone dose, but I hope that my body eventually adjusts, that I will feel awesome again, and be able to continue lowering my dose. (One of my ongoing goals is to get off it entirely.)

There is a nurse at the CF clinic who has the ability to tell instantly how you are doing. She does this, amazingly, while we patients wear masks that cover up half of our faces. She says she can tell by our eyes. I don't know what her secret is but I have found her to be amazingly accurate. When she asked how I was feeling, I told her very well. She said that I looked very good to her - the best I've ever looked, actually. That was quite a compliment coming from her!

My pfts were pretty much unchanged from my last two visits. That is kind of discouraging because of how good I feel, but when you consider that I have been lowering my Prednisone - which has surely inflated those numbers in the past - it really is a good thing. I believe the cause of my feeling good is:

• haven't gotten sick
• compliant with treatments
  
• exercising a lot
• a supplement called NAC (n-acytelcystine)

The story with the NAC is that I have been flirting around with it for the last couple of years. But it wasn't until the last few months that I started taking it regularly twice a day - and after about a month of that I started noticing pretty significant changes: I often don't feel like I needed to do my mid-day treatment, my exercise tolerance is (pretty significantly) up, my mom commented that I don't have "the CF voice" anymore. I think I have more energy, too, although that is hard to tell with how busy I've been.

But back to the appointment. I am switching to a new brand of enzymes, which I am a little nervous about. But it seems to be going ok. It's been kind of like switching pet foods, I'm adding them in a little at a time to make sure my belly is getting used to them. The reason for the switch was that my current brand is going to be changing names and will not be available for a couple of months; at the same time I am finding it too expensive to buy my special-for-CF ADEK vitamins, and this new company gives the vitamins to you free. My last blood test showed my Vitamin A levels were a little low, so the Dietitian was concerned it's because I wasn't taking enough ADEKs. I personally think it was just a fluke because my vitamin levels have never been low but she wasn't buying it. :)

The other thing that was really good was a conversation that I had with the social worker. I used to loathe the conversations with the social workers as they prodded into my psyche to try to see how "well adjusted" I was living with a chronic illness. This, however, was a conversation mostly about insurance - specifically what I would do for insurance if I lost my job at TNC (please no!) I have long said that I have no second-best option with this.

Turns out it's not as bad as I thought. While the state has abolished the Adult CF program that would help low income people with all of their CF expenses, there is a new insurance in NC for high-risk patients called Inclusive Health. I'm not sure how it works, but for $300-400/month I could get on it. The program does have high deductibles, but also covers more than just CF expenses.

Also, (and this is kind of sad, but also good to know...) I already technically qualify for federal disability (SSDI) since I cycle inhaled antibiotics continuously and my fev1 is below 50%. However, if I applied for that, I would have to not be working in order to plead the case that I'm not able to work. So that is not something I want to have to do. After being on SSDI for two years, one automatically gets Medicare insurance. With my job now, I think I could get COBRA for 12 or 18 months, so there would still be a gap in coverage. But hopefully the Inclusive Health would be around then to help with that.

The other thing is that UNC itself has programs both for hospital/clinic visits and for prescriptions. So the worst case scenario, I could get all my care there free (I already qualify for the hospital/clinic part of this program b/c of my low income and so all of my co-pays are waived) and could go there to get my medications once a month. Not ideal, but certainly a nice safety net to have.

So while all of that stuff is totally no fun to think about, at least I feel like I have a good handle on it. And it's definitely less scary now that I know what my options would be. Now to hope that I never need to use any of them! :)

MutantFest '10

This past weekend, Todd and I traveled to Boston for my best friend ever with CF's funeral. He died back in December but his family waited until now to have a second service for him. Paul would have been thrilled at the number of cystics who traveled from all over the country to be there - count us - 15!

Although it was difficult, it was great being there and meeting so many people who I have known only online (except for one who I've met and two who I've talked to on the phone) for a number of years. It was also nice to meet Paul's parents and brothers.

We did a lot of other things while we were in Boston. After we arrived on Thursday, we rode the train about an hour to see my great aunt and my mom's cousin and his wife. That was cool. Hadn't seen them since my brother's wedding. Even got to go to their house/farm and see her horses, chickens, golden retriever and six-toed cat!

The next day we met one of Todd's cousins for lunch in the historical part of Boston. It was a nice walk there through the Common and by a lot of other historical sites. It was a perfect day to walk around outside. After a good lunch with Kim, we got ice cream and walked across the river to the Bunker Hill monument and U.S.S. Constitution. After a short rest at the hotel, we wandered around another part of town and ended up stopping for dinner at a place right next to Fenway Park. (Paul would have approved.) We had a beer at the famous Boston Beer Works afterward.

All-in-all it was a great trip.

The minute I got home, my attention turned to soap. The debut of 808 soap is Friday - tomorrow! - and then we leave Saturday to spend a few days at the beach with Todd's family for a wedding. In lieu of a website, our soap has a facebook page. If you haven't already, please become a fan so you can stay in touch with what's going on with us. :) I will also be posting pictures of First Friday as soon as I can.

The other side of things

It may not have been the smartest thing to create a blog, which I have pledged to myself to post on regularly, right before I leave town for eight days. But that's what happened.

Some of you know that my dad was in the hospital with lung/heart issues a couple of weeks ago for about a week. I drove up here to Cleveland last weekend to help out after he was discharged. I was afraid that I might have missed all the action but I was wrong.

When my dad has a bad breathing day, he has a bad breathing day. It means that it is hard for him to get up and walk across the room. Fortunately most days aren't like this for him. But being so soon out of the hospital, he has yet to get back to his baseline. It's hard to see stuff like this happen to your parents. I keep telling myself that it is a natural - albeit very difficult - part of life that most people go through. But that doesn't really make it any easier.

For my whole life, I was the one in the family with health problems. I was the one who would get sick, go into the hospital, be feeling like crap, miss work, need to learn to listen to and respect my body's limitations. And since my dad's health problems started becoming a little more predominant the last two years, I've seen what it's like to be the patient - the person everybody worries about and sends their love and well wishes to - from the other side of things. And let me tell you, it's a little bit of a trip.

I guess I have two observations about it. First of all, it is much harder seeing someone you love have health problems than having them yourself. Frankly, I don't know how T, my friends and family all handle it so well. When you are the sick one, at least there is an illusion of being in control even when things are beyond your control: I have realized how very much my loved ones go through.

Secondly, I think that one is a better supporter of a loved one with health issues when the person themself has had some sort of health issue. When someone is sick, people always want to help but they don't know how. But an experienced patient is more likely to know the kinds of things one wants in that situation - there is a fine line between being helpful and overbearing, empathetic and emotional, helpful and overly suggestive.

So yes. Every day I know that CF has taught me things. But today I can appreciate that it has taught me to be a better daughter, too. Something that is most unexpected.