My Two Favorite Dorks

My Two Favorite Dorks

Monday, December 20, 2010

32

Erica, me, Ted, Paula, Todd at the Alley

I am 32 today.

I think birthdays are extra special for those of us who count our blessings each day, as I do. Hardly a day goes by when I do not stop and thank the universe for my friends and family, my T, my lovely pets, my health. That last one can be a bit of a challenge sometimes. But no matter how bad I feel, I can always think of a cystic who was in a worse situation...and for that, I am truly thankful.

Friday night was my celebration with friends. We had a bowling party. It was so much fun drinking Blue Moon while listing to all kinds of upbeat retro songs. Everything was laid back and relaxed, and what a good group of folks...so much positive energy!

So what did I do today? I started the morning with a cupcake and a cup of coffee. I then spent 2.5 frustrating hours at the ENT (I would have scheduled it for another day, but I also had a hearing test done and I have been anxious to do that asap. And as it turns out, I continue to have sinus issues even after my IV antibiotics, so it was a good idea.) I got to work in time to be taken out by my lovely coworkers for Mexican deliciousness...it was fun.

After work, I took a much needed nap then woke up and opened my remaining presents. Todd got me the warmest slippers ever!! The rest of my friends and family were also incredibly generous. The cap of the day was an amazing dinner out at a fancy local restaurant with my mom and Todd where we had an incredible meal and left very full and happy. My mom was so sweet and got me flowers, massage gift certificates and a couple of other things. I was feelin' the love from everyone. :)

It really was what anyone wants on their birthday...a celebration of me. And now, another year starts. Bring it!

Tuesday, November 30, 2010

Over the river and through the woods

The really exciting news is that I am done done done doing stuff/setting up/preparing/etc. for the two First Friday events my soap partner and I are doing on the 3rd. I am really happy with our display at Designbox, which has three containers halfway filled up with the soap on top of that - orange lentils with our scrub soaps, wild rice with the goats milk, and oatmeal for clear glycerin. Here is a picture:



Thanksgiving:

I felt like I overcame a million obstacles and back-and-forths about my trip to Cleveland to see my dad and step mom and her family Thanksgiving - a trip I had planned for so many months that the thought of giving it up was devastating. I ended driving my mom's brand new Prius up there! So nice of her to let me do that. And I had a wonderful, wonderful time. We all jive really well. Even after 5 days there, I could have stayed longer. Here is a picture of my dad and I right before I left:



Also while I was there, I ended up coming down with Todd's cold, which I had tried so hard to escape. Fortunately, with the herbs, Vitamin C, zinc, green tea and lots of water, my symptoms were pretty mild. But it definitely lingered, and has continued to affect both my lungs and sinuses.

To finish telling you what's up now, I have to fill you in on what happened after I had to stop Tobra b/c of the ear ringing a few weeks ago. The first few days after I started having worsening lung symptoms. I got pretty upset because, well, one, it's easy to be hyper-emotional when you're in the middle of an infection; two, I was worried about being able to have Tobra in the future; and three, probably the biggest thing, I didn't want to lose ground on the two weeks I'd already had on IVs!

At my two-week follow up appointment, when I thought I might be declining again, I was surprised to have my highest PFTs since 2007. But with the uncertainty of my lungs after the abbreviated course of Tobra, we decided to keep the picc line in and follow up after Thanksgiving. I did start to feel better after a couple of days - my energy was increased and my lungs started feeling good. And then...Todd got a cold. And a week later, so did I. And the cold lingered in my head and stirred up my lungs, which brings us to now.

I usually write a lot on here when I'm sick, partly to keep people informed and partly for catharsis. But I haven't really felt like it. A lot of the reason is that I have been frustrated with not knowing what is coming next...I need to be a more patient patient.I've felt like I'm planning my immediate future around the outcome of my next doctor's appointment - and I've been so long up and down (several months, really) that my internal compass is all out-of-whack: I don't know which of my instincts to trust.

So here I am, missing more work this week (but working some from home, thankfully.) I am almost out of sick leave so if I do IVs again, I'm going to have to do all the FMLA stuff. I am currently treating my sinus infection with two orals and an antibiotic rinse, but my lungs are feeling so sticky and congested. I really just want to feel good right now.

Sunday, November 7, 2010

Adventures on IVs

Sometimes it seems like every day on IVs is an adventure. Here are some of the highlights and lowlights of the past week.
  • Last Saturday, I had my first Tobra levels which were, thankfully, right on target. That means my dose was good and, more importantly, no rechecking necessary after a changed dose. (Tobra levels require two sticks, pre- and post-Tobra.)
  • On Sunday night my arm started getting really red (partially) under where my dressing was. This required a visit from the nurse Monday morning (the third in four days). We discovered that I was probably allergic to a new type of cleaner they use in the dressing change kits. To be safe, we went back to the old cleaner and also used a new kind of dressing for people with sensitive skin. It has been better, but still a bit itchy under there. I think it's just the dry weather.
  • Tuesday evening was the second evening in a row that I noticed slight ringing in my ears, more like a high pitch sound, actually. It only lasted about 10 seconds. Ringing in the ears can be a side effect from Tobramycin and can lead to permanent ringing - yikes! Tobra can also cause temporary or permanent hearing loss. Unfortunately, it is has happened to a good number of people I know in the CF community. I've had the "ringing" happen before sporadically, but never consistently. My doctors and the home care company were quite concerned...they wanted to know the exact details. Luckily, I had Tobra levels scheduled again for Wednesday so we could make sure my dosing was correct. Unluckily, I've found out hearing loss/permanent ringing is something that can happen even if your levels are in check.
  • Second set of Tobra levels on Wednesday also ended up being good. Yay! Unfortunately, the second poke hurt like hell. In fact, it still hurts. I admit, I can be a baby about blood draws, but ugh. Sometimes it just hurts like hell. Fortunately, not very often. Question mark on where they are going to draw my next set of levels now that my good vein is out of commission for a while.
  • Mid-week was when I really started feeling better from the meds. The biggest change is that my energy is so much better. But my temp is also down, lung pain gone, appetite WAY up...now I'm just waiting for things to look a bit better with my lungs. Still, it's so much easier to deal with all this shit when you are feeling halfway decent.
  • Both Wednesday and Saturday, we went to see two good Hurricanes games. Not health related, but still exciting. :)
  • Friday night - I had my first beer in a really long time. It tasted really good. Recently, I have basically cut out drinking and caffeine - just to give my body and my mind a break. I like it.
  • Last night and tonight, I got an "itchy arm" in the arm my picc line is in. It started with a "scratch me" feeling and before I knew it, my arm was all red. No idea what caused it but I hope it's not related to any of the medicines I'm on.
  • Did I mention I'm not looking forward to Tobra levels on Wednesday?
I guess that's all for now.

Update: Monday am - discontinued Tobra due to overnight ear-ringing (tinnitus). While I am happy to have one less thing to do and not get levels drawn anymore right now, I am a little freaked out about what this may mean for the future. It sucks to have complications with (what might be) the only thing to really kill one of my bugs.

I tried to talk Dr. C into half-dosing until Thursday (which will be the 2 week mark) but he didn't think that was a good idea. He cited some study that shows most people get all the clinical benefit they are going to get after 10 days on IV antibiotics, and I am at 10 days now, so not the worst thing in the world. Honestly, I would be more freaked out right now if I wasn't feeling better. In the future, he said, we may either do Tobra or Tobi, but probably not both at once anymore. And I am to follow up with the ENT for a hearing test in a couple of weeks. Many hearing complications during IVs can be reversed, but some, sadly, cannot.

Monday, October 25, 2010

Sun and sand and IVs

Our nephew, Sawyer, making a sand castle

My life has not been lacking of medical adventures since I last wrote. But first...

I spent an amazingly awesome and relaxing weekend with Todd's family at Holden Beach. While not an ideal time for a trip out of town with how I've been feeling, our two-and-a-half-year-old nephew and his mother had flown out from Montana and since we do not see them much, I definitely wanted to spend time with them. We had thought we would go to the mountains to see them but it turned out they wanted to come to the beach. So the two of them, plus Todd's dad and brother, the two of us, and four golden retrievers all packed into a house that Todd's aunt generously lets us use down there. We had two amazing beach days of weather in the 70s, sunny, beach practically to ourselves. It was little Sawyer's first trip to the ocean so we got to see him have a blast with that. We also ate a ton of fresh shrimp, and I attended my first oyster roast! (I had two oysters and they were kind of gross, but not as gross as I remembered them to be. I gave it a try at least.) It was a really great time.

So, rewind: Last week's adventures began on Tuesday when a co-worker pointed out to me that my "feeling extremely speedy" side-effects from the Wellbutrin XL I had started weren't necessarily normal. I did some research and found out that, indeed, a large amount of people have had issues (of the same sort) with generic Wellbutrin, bupropion, which is what I was taking. I contacted Dr. M - he had heard of this but thought it was an issue that had been cleared up years ago. I guess not! (While the two substances are chemically the same, or, at least very close, the "extended release" of the generic has not been thoroughly studied. At least that is what I gathered through my research.) So far, so good with the actual Wellbutrin XL.

Next up: Wednesday night we went out to celebrate a friend's birthday. I had a good sized meal and also dessert. I was stuffed. I came home and Todd stayed out for a while. After a bit, I thought my blood sugar was low and indeed it was about 40 - dangerously low. I drank some juice and started eating sugar, but I was so full it was becoming uncomfortable quickly. I started to worry, what if I got sick and couldn't keep sugar down before my blood glucose could rise? I kept checking and my blood sugar would barely rise or sometimes fall back. What the heck was going on?!

It took all my self-control to not completely freak out. Here I am, 11:30 at night, alone at home, scarily bordering on losing consciousness or what I didn't even know. FINALLY, it came up to 70. I was feeling nauseous and bloated and decided to take a shower to try to relax and take my mind off things. I have found that distractions are amazingly good for anxiety. When I got out of the shower, I was still feeling shaky, although my sugar hadn't dropped much. I got sick. I ate more sugar. I promised myself that I would never again not take my blood sugar before eating (a bad habit I have and something I had done that night.) Finally, finally, finally, it got better. I took a Xanex and, when Todd got home later wondering why I was still up at 1:00, I burst into tears...

The next afternoon, another mini-debacle. I had a late lunch, did my insulin (of course I was diligently checking my sugars from the moment after the previous night's episode), and was on my way after work to get my Xolair and allergy shots and noticed in the doctor's office that I was about 60. I politely asked for some juice since I was sick of Starburst and sugar packets from the night before. And I kept drinking more and more but my sugars stayed the same for a while before coming back up. Something truly odd was going on!!

Thus began a weekend of scaling back settings on my pump. I would get low after a meal, scale back my bolus; I would get low between meals, scale back my basal. It took several frustrating days (and by the way, you know you've been checking your blood sugar a lot when you prick yourself and blood comes out of four places on your finger) but I finally figured it out by Saturday. But what in the world had caused it??

The cause is a total mystery. Both the Wellbutrin and Actigall, which I started a few days before this happened, do not have low blood sugar associated with them. Could the Actigall have broken up something in or near my pancrease, maybe in a duct or something, and now insulin can get out more easily? That seems plausible to me, although there is absolutely no evidence to support it; the others are that one of the medicines caused me to become more sensitive to insulin, that the medicines somehow interacted in an unusual way, or that it was just completely random! In any case, I am on almost half the amount of insulin that I was before this happened. That is amazing and a really good thing; it's just that I want to know WHY!

Is that enough adventures in one week for one girl? I think so! But unfortunately, this is a new week. While my weekend was amazing, I for whatever reason today woke up feeling what I can only describe as "cystic-ey" ... my lungs feel tired and perpetually full of junk; and even after a good cough there's another rattle behind it. So after trying so long and so hard to get over what probably started as a cold two months ago, I am getting a picc line placed and will start soon on IV antibiotics. Were IVs inevitable this entire time? Maybe... but I was happy with the progress I was making the last few weeks, and there was too much going on for me to tell for sure my lungs were the things that needed more treatment. I think I made the right decision. Wish me luck!

Saturday, October 16, 2010

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...

Sunday, October 10, 2010

Anxiety...not over

me, holding our beautiful le tour de femme sign

The event is over!! As much as I was looking forward to it, I am so relieved to have it over with. The biggest success was the cool people we met, some networking and getting our name out that happened. I think we sold about 17 bars, which would be slammin for First Friday at Father and Son. But the disappointing thing was that we had this awesome display of yellow ribbon and flowers we had made just for the event that hardly sold at all! When we told people half the profits were going back to the event, they thought that was so neat...but not neat enough to buy, I guess. The fact that we did not take credit cards also slowed down a few sales, as we suspected it might.

some of our ribbon and flower soaps

There was a breast cancer survivor selling t-shirts that she designs and prints herself with different cancer sayings. I bought one that says "fight like a girl" that is a really cool design and ended up going back and getting another one for a gift. Here is her website.

Anyway, at the end of the event we struck up a conversation - she offered to buy the ribbons that hadn't sold and wants to sell them on her website, which she wants to expand to include more than t-shrits. She asked if we could do them in pink goat's milk, which would be a cinch for us! She said that when she was getting chemo, her skin was SO INCREDIBLY DRY that she ended up having to get special soaps and lotions. And she found this place at the farmer's market that sold goat's milk soap that she loved. Anyway...as all good connoisseurs of soap know, once you use good soap, it's hard to go back. So she said that selling our kind of soap to the cancer community is actually a kind of service to them. Very cool!

So that we tour de femme, 2010. And I couldn't have done it without my friend, helper, and the prettiest soap pusher in the Triangle area (at least), Deana. Thanks, girl! I can't pass over Elaine and Maura either. While they weren't there, were an essential part of helping me get ready for the event. Missed you guys!!

the lovely Deana

I had hoped that after the event, I would breath a huge sigh of relief and my anxiety level would drop several notches. Unfortunately, this hasn't been the case. Which has left me in a guessing game as to the culprit of my recent spike in anxiety - is it one of the two antibiotics I'm taking? Or just an underlying problem that is getting worse? I have no idea, but my symptoms, at times, continue to create a major disturbance in my life. Last night I was up for a couple of hours trying to calm myself down enough to fall asleep. Was my blood sugar low? No. Maybe I had to use the bathroom. Yes, ok, again? Is my heart beating as fast as I think it is? Yes...ok, I need to chill...deep breaths...feeling a bit relaxed; then notice my heart pounding in my chest...maybe I should test my blood sugar again? Over and over like that. Never what I would consider a full-on panic attack, but feeling on the verge of it happening frequently.

My trusty Valium doesn't seem to be working as much as it used to. I'm not sure if I have developed a resistance to it or what. But I am definitely pursuing switching to Xanex. My friend gave me a couple and, while it took a bit longer to work, it lasted longer and was more effective. But I am concerned that it might make me sleepy, which I don't want if I'm at work or anytime I would need to drive so...yeah, I'm calling the shrink tomorrow and going to see if I can move up that appointment.



Tuesday, October 5, 2010

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.


Saturday, October 2, 2010

Busy bee

I've been busy.

I am always busy, but particularly with the soap event we have coming up in a week, there has been more to do than I ever imagined. Not that I am doing it alone. But it has taken more time and mental energy than I thought.

I want to tell you about something strange that happened. First of all, my energy still is not my normal since my cold four weeks ago. It has been hovering around 90% for the last two weeks. It's enough that I'm working my normal hours, but not enough that I've been able to exercise like I would like to. (Sadly, that is the thing that gets dropped after work, errands on the way home (which sometimes seem endless), napping, and doing therapy...by then it is dinner time.)

Starting the week before last, I have found myself extremely tired after work. Like, I'm fine until I leave the office, but starting at that moment, all I can think about is taking a nap. And the 35-minute drive has seemed tedious for the first time since I started my job. It was one such day that I was driving down the highway and felt an incredibly strange sensation wash over me - it started as I-don't-know-what and ended as a panicked type of feeling. I pulled over, checked my blood sugar (which was a bit low but not enough to cause crazy symptoms), regrouped and then continued on. But what was it?

Since then, I have been getting feelings of panic from time to time throughout the day - especially when I am driving. It never escalates into a panic attack, more an underlying sense of unease or nervousness about my well being. I have noticed that it happens more often when I am tired. Afterward, I decided that I was doing too much, and that I needed to reprioritize: not work over my 5 hours per day; make sure I was getting enough rest at night and napping after work if needed; and really trying to exercise, if I had the energy.

Basically, it's how I get when it's time for IV antibiotics, only my lungs are doing great right now. I'm ready for the world to stop, or at least slow down, while I take a rest and then rejoin when I'm feeling up to it again.

My week of reprioritizing had mixed results. And let me tell you, it has been really hard to slow down. Almost like I am addicted to stress or busy-ness - how un-yogic is that! Anyway, I did manage to get more rest (napped every day after work - very unlike a healthy me) and worked less, but my anxiety has continued, and my sleeping seems (while I don't allow it) to be somewhat insatiable.

So what's going on? Yes, life is busier than usual and I have personal and family health issues I've been dealing with. But I feel like with my dad having been sick, and the pending decision about gallbladder surgery, my body is just now catching up to the emotions I've been going through for the last month...and it's not handling it well. I've also found myself feeling depressed.

I wonder if it's time to talk to a councilor - or even begin a spurt on an antidepressant (while I dislike the idea in general, I also used it before to get through a tough time in my life.) And I also wonder, if something has to give, what is it?

I know one thing for sure: I can't go on like this. And if I do end up going through gallbladder surgery, I want to have all of this unusual emotional stuff as sorted out as possible.

My goal for next week is basically the same - I'll let you know how it goes.

Sunday, September 19, 2010

Fun stuff outta the way


I got the fun stuff out of the way in my last blog. Now time for an update about the serious stuff!

So the big, huge, ginormous news in my life is that my dad, who has emphysema and has had increasing difficulties over the last two years, has decided to see whether or not he is eligible for a lung transplant. The last time he was in the hospital, which is when I was in Montana, a transplant coordinator approached him and said that ostensibly he seems like a good candidate. So we will see how it goes.

I had talked to my dad about transplant a couple of times. I really thought that he was not open to the idea. But now, I think that "dismissal" was at least partly because his situation did not seem serious enough to him. But after having had a rough summer, things changed.

Even being the veteran I am dealing with lung disease and transplant, this is a lot of emotions to deal with. And I'm not quite sure how far I've gotten with it all. It is so hard to be so far from my dad (he is in Cleveland, OH and I am in Raleigh, NC.) It is hard to gauge how someone really is just by the phone. I'm currently planning to go up to visit him the entire week of Thanksgiving. I went up there for a week in April and it is so much better than the short visits. So I am focusing on that.

So that is the dad news. Now for the 'me' news:

1. I came down with a cold in Montana and I have been slowly, SLOWLY coming back from it. I have not been to yoga or exercised since we got back two weeks ago because I was worn out at the end of the day. Finally, today, Todd and I rode bikes downtown. It felt good to move again. And I will be back to yoga this week, too.

This is my first cold since starting on the NAC hard core and I have to say - again - I think it helped me a lot. My one year since IVs anniversary is coming up (Sept 29, baby!) and so I was really depressed at the thought that I would not make that mark because of situation that was preventable. Hopefully I won't have to worry about that now. My lungs are still a little more congested than usual, but each day seems a little better.

2. I went for a consult for another GI doctor about my gallbladder issues last week, this one at UNC, where all of my other doctors are. I really liked the woman. It was nice that she wasn't stumbling over the names of my CF medications and she didn't have to ask why I was on things. I completely agreed with her course of action 1. redraw my liver functions to make sure they are still not elevated; 2. redo the ultrasound from July to see the status of my sludge (since I have not been having too many symptoms, it may have gotten better); and 3. after seeing those results, then think about referral to a surgeon.

She did not agree with the previous doctor's recommendation of an endoscopy (nor did I). And, unlike the other doctor, she said my pain very well could be a result of my gall bladder. (Another interesting thing I found out was that the difference between sludge and stones is not a matter of consistency but rather size; so, enough sludge can cause the same sorts of pain and problems that stones do. But sludge, unlike stones, has the ability to be reabsorbed by your intestines and go away.)

3. My brother came down for a visit last weekend from Michigan. It was so good to see him! I love me some brother. He actually came down because we took my mom to see Garrison Keilor (of whom she is a huge fan) as our mother's day present for her this year (Summer of Love Tour, above). She had a great time. I was feeling pretty awful because of the cold, but I still enjoyed his visit. :)

4. My soap partner, Elaine, and I are getting ready for a big soap event in three weeks. We are going to be selling at a women's charity bicycle race called le tour de femme. So we are busy not only making soap but also trying to figure out how we are going to set up under a tent. We hope to do more craft type shows (there is this really cool thing in Raleigh called the Handmade Market that we want to get in on) but this will be our first one! Unfortunately, Elaine is going to be in NY during the event, but I will have a friend or two to keep me company.

Wednesday, September 15, 2010

Montana Trip


View from a typical country road in Montana

Fantastic trip out west. Probably did too much, which Todd and I are often guilty of, and didn't take enough time to relax enjoy each others company. But lots of fun and stories to tell. (The stories will have to come in person, this will just be a run-down of what we did.)

We (me, Todd, and our friend Gabriel) landed rockily into Bozeman, MT on Saturday Aug. 28. When we arrived at Todd's brother's house in Dillon, I could tell right away he had a cold and my heart sank. Sure enough, Todd came down with it in a couple of days, then Gabe, then finally me. That was probably the lowlight of our vacation.


Sawyer at Grasshopper Ridge

We got to spend a few days with our 2.5 year old nephew, Sawyer. That was awesome but man is it a lot of work. The three of us kept him one day and it took all of us pitching in. We did a little fishing, some nice mountain drives, saw a ghost town, and of course thoroughly explored all the favorite bars along the way.

On Wednesday, we headed for Yellowstone - it was Gabe's first time seeing it, which is always fun to experience. (My third time.) We were very conscious of the elevation issue (last time I got altitude sickness b/c we went straight to a very high spot in the park for the night.) I had my pulseox with me and was checking my oxygen constantly. The lowest parts out there are like being in the mountains here, so going into the mountains there can require adjustment. I wasn't too worried, though, because my fev1 is much higher than last time I was out there so I figured I would do better overall - and I did!


Upper part of Mammoth Hot Springs

We stayed the first night outside the park near the Mammoth Hot Spring entrance, about 5,000 feet. Took a short drive into the park that afternoon - saw elk in the middle of the village of Mammoth! and Mammoth itself is truly magnificent, one of my new favorite spots. We drove through some high mountain passes that first day which were kind of hairy for my oxygen - I was pretty uncomfortable a few times when it got down into the 80s - even the guys could feel the elevation, Todd with his then-inflamed sinuses. But back at the hotel it was fine again.

Next, we spend a day driving through Yellowstone's west side - we went to the Boiling River, where a hot spring comes out into a cold river and you can sit and enjoy the warmth intertwined with periods of cold, unmixed water. We saw some paint pots, which are like cauldrons of bubbling mud sitting in the ground. Then saw other geysers, hot springs, geologic wonders, finally making it to Old Faithful right before dark.

Artists paint pots - watch out - they splatter!

That night we drove to Jackson, WY (a little over 6,000 feet.) It was dark coming in so we couldn't see anything. The next day we set out for a hike which I thought would be doable at Jenny Lake. The Grand Tetons are striking; they rise sharply out of the ground to enormous heights; there are glaciers among the peaks. Jenny Lake was fun. We had a picnic lunch and then took a boat ride across the lake to where the trail started. An "easy to moderate" 1-mile climb was almost too much for me - but we made it both to some beautiful waterfalls and to a fantastic look-out. I was so proud of all I was able to do at that elevation!


Gabe and Todd, Jenny Lake behind

We took it easy the rest of that day. (Which was good because I soon discovered I was coming down with the cold I had so far managed to avoid.) That night, we went to dinner in Jackson, a fairly bustling touristy town with lots of downtown charm. Then to the Million Dollar Cowboy Bar. The bar lives up to the stature of its name: there are saddle seats at the bar, there was a country band playing and there were a fair number of authentic westerners. Unfortunately, I was fading fast, even though the people watching was first rate, so I took the car back to the hotel while the guys stayed out. (No telling the trouble they got into but I heard that Todd actually got out and danced to Sweet Home Alabama!)


Outside of Jackson

Saturday, we headed back to Montana through endless fields of Idaho wheat. The rodeo was in town for the weekend and it was a BIG DEAL. We ended up going to the rodeo that night. That was very cool. The bucking broncos were my favorite b/c if the riders fell off, or even if they made it the full 8 seconds, they had these two guys on horseback who would ride beside them so they could jump onto them. Then, the rider would jump down and the two guys would have to chase down the horse, which would still be bucking for a while. Fiesty!


Rodeo

On Sunday, it had gotten a bit cooler (I forgot to say, the weather at the beginning of the trip had been cloudy and on/off rain. But once we got to the park - like magic - it cleared and warmed up nicely.) But we got in a float trip with Brad - the trip would not have felt complete without at least one. It ended up being a pretty nice day despite having to be bundled up and fighting the wind. I think I might have caught the biggest fish that day. Overall, did decent amount of fishing on the trip, without a whole lot of catching, which was fine with me. :)


Me fishing at Bear Creek - sexy!

By our last night, I was ready to be home. I was coming into the worst part of the cold, and was cough, cough, coughing the entire plane ride home (or so it felt.) I hate being that person! I usually clean my seat area on planes when I first board; this time I cleaned before and after. At least I am a considerate sick person, right?

There is MUCH more to tell, but I will save it for another blog.

Thursday, August 12, 2010

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.

Sunday, August 8, 2010

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!

Friday, July 30, 2010

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.

Tuesday, July 20, 2010

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.

Tuesday, July 6, 2010

D.C.

The always beautiful Union Station, Washington, D.C.

I'm a little behind in blogging... *sorry* I really do love writing and keeping you up on the latest happenings of the Catboogie. So I hope it isn't too discouraging.

Week before last I had to go to D. C. for some work training on Monday and Tuesday. I decided to ride the train up - it's about six hours from Raleigh by train; 4.5 to drive; and I hate flying, so it seemed like a good option. The ride up was smooth although I was a little panicked because I'd left the office on Friday in such a haste that I forgot to print out the information about the meeting time and place! I had emailed various people asking, but they were not answering over the weekend. I thought I figured out where the training was held; and I thought it probably started at 9, but decided to arrive at 8:30 for good measure.

So let me back up a bit. The hotel that was booked for me by our national office was called Hotel Rouge. Usually when one goes to D.C. for work they stay near the World Office proper, which is in Arlington, VA, so this was truly a treat. The Hotel was near Dupont Circle, a sort of newishly gentrified part of town (by newish I mean the last 20 years). It used to be sort of ghetto but has since turned into a thriving gay and hipster community. I was right at home. :)

I checked into the Hotel Rouge about 4 pm on Sunday. I quickly got settled and decided to set out for the National Gallery because I had never been there and they had an exhibit of Allen Ginsburg photographs. I have always loved the beats so I was super excited about it. I browsed through the main gallery, checked out the Ginsburg photos (which I loved!) and then crossed the street to the Sculpture Garden - a block large exhibit of different modern works set along a gravel path.

When I was done with that, I decided to head back into the vicinity of where I was staying and stopped at a restaurant near Dupont Circle and got two appetizers and a couple of beers. Fortunately I was not hungry because of the incredible heat - they were the smallest appetizers I have ever gotten!

The next morning, I got up and arrived by 8:30 at the alleged meeting place only to discover a locked door and a receptionist downstairs who had no clue of what I was talking about. Fortunately, around the same time, I received an email from the training coordinator who informed me that the training actually did not start until the following day. Not quite sure how that mistake happened! Pretty embarrassing, actually. But in any case, I returned to my hotel, changed clothes, extended my stay an extra night, and then changed the return ticket for the train.

The downside of the mix-up were obvious: I'd messed up the dates of my training, I needed more clothes and would be slightly short on a couple of my meds. But the good side was that I had an entire unexpected day of sight seeing in D.C. I decided to go to this new place called Museum - a museum of news. It sounds kind of weird, but it was really cool. Some of the highlights: part of the Berlin wall, part of one of the World Trade Center towers, Ted Kaczynski's cabin (the actual one!), among many many other cool things.


Section of the Berlin Wall



Ted Kaczynski (aka The Unabomber's) Cabin

After that, I headed to Madame Tussauds wax museum. I had never been and thought it would be a good way to kill some time so I didn't get stuck riding the subway during rush hour. All in all a very good day in the city.


Waxen Obamas

Tuesday morning, my training began. It was really good - we were introduced to TNC's new website platform, and talked some about web writing in general. That night, they provided dinner for us at a restaurant near there. No time for sight seeing that day. We finished off the training the following day at noon. I made my way back to the hotel, got my stuff, and took a taxi to Union Station. I love the feeling of just being in the city - you can pretend like you live there, fantasize about the urban life, and no one knows differently.

The train ride back was more crowded than the ride up had been. Every seat in our car was taken - many people were aboard for a long haul (the train runs NY to Miami). Because of various delays, I was two and a half hours late getting back to Raleigh.

It was good to be home. It was even better that I had the next day off work to just chill, unpack, rest up and regroup. Only seven days until Todd and I would set off on another trip - to Cleveland to see my dad for the Fourth of July. More on that to come.

Friday, June 18, 2010

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.

Cystic Fibrosis  Foundation's Drug Development Pipeline
























Thursday, June 17, 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.

Saturday, May 29, 2010

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! :)

Thursday, May 13, 2010

Revisiting old goals



"It's never too late to be the person you wish you were."

I watched two documentaries last night, I.O.U.S.A. and No Impact Man. I.O.U.S.A. is about the serious financial situation our country is in with the national debt, trade deficit, deflating currency, etc. I knew the situation was bad, but this movie seeks to quantify exactly how bad it is. If you can wade through the sea of numbers, the take away message is quite clear: our country faces a financial crisis if nothing is done about the way our national government spends money. Today, we live on money "borrowed" from future generations, only the future generations have had no say!

Seems like a pretty huge issue. So what can we do? Well, first of all, vote to elect people who are fiscally minded, who understand the importance of the problems we face and will attempt to remedy them. (I think some of this happened with the health bill that passed. Medicare and medicaid together account for a whopping 20% of the US budget! See here for more information.)

What else can we do? Save more, spend less. When Americans have money in savings, they become debt holders for the country. When they don't, the Chinese and Japanese become debt holders, which is what has happened. Besides, it's just good practice to have some money saved in case of emergency.

This is something that I really struggle with. I would love to have more savings built up. My current job is the first time I've had a 401K and I put 8% of my pay into that. But I make such a little amount of money, that I'm not able to save much. Todd and I have so much we want to do - trips, changes to the house - but when I see a movie like this, I just want to hunker down and live more frugally. Which kind of brings me to the next movie.

No Impact Man is about the journey of a guy, his wife and young daughter in NYC who try to live for a year with having as little impact on the earth as possible. They start out by not taking elevators, riding their bikes or walking everywhere, buying their food at the local farmer's market (they eat only food that comes from a 250 mile radius). They vow to buy nothing new, only used things. Coffee, spices, and olive oil are all out. About six months in, they decide to turn off their power.

Despite its flaws, the movie was a good reminder to something that is easy for even me to lose sight of: our actions DO matter. It's so easy to get swept up in the stream of consumerism. Each take-out container, to-go cup, bottle of water(!!), soda can, toilet paper roll, individually wrapped whatever - not to mention all of the plastic stuff that looks all shiny when you buy it but then breaks six months later - everything has to end up someplace. Some of it we can recycle, or compost, or give away - but much of it ends up in landfills.

So I am back on track to live a good environmental life. I want to try to go to the Farmer's Market once a week, reduce my to-go cups (iced coffee!!), continue to bike instead of drive if I can, and start composting!

On another subject, I also wanted to say that Todd and I went to a wedding at the beach this weekend with his family. We had a great time although the weather was a little chilly. :) I was feeling run-down when we left but started feeling better soon after. I think I just needed a little R&R.

Saturday, May 8, 2010

First Friday Soap Debut

First Friday was a success! We don't have the final count on how many bars of soap we sold but there was a big dent made in our display for sure. Thanks to all of our wonderful friends who came out to support us!

Here is a brief run-down. First of all, to set the atmosphere, I have to describe the building this all takes place in to you. Father and Son is ostensibly an antique shop housed in a 100-plus year old three story building downtown. It is actually one part antique, two parts vintage clothing, three parts retro stuff from your childhood - and the top floor is broken up into several artists studios. It's a pretty funky place (with no air conditioning.)

So anyway, the evening started out kind of slow. When we got there a little past 7, the band was warming up downstairs, there weren't many people browsing. Some of our friends began to stop by and we had time to chat with them. When the third, behind the scenes, member of 808 arrived, it was time for the champagne toast!

Things started to pick up around 8 and then got really busy between 9-10. The whole night we were doing a raffle to give away a couple free bars of soap. That gave us a good conversation starter when people walked into the room. I was a little nervous to start, but it definitely got easier. I had a hard time seeing myself as an "artist" the way I felt people would see me. That's all new to me!

My favorite thing was that a couple of people came in and were really blown away by the soap. They'd say "whoa!" like they'd never seen anything like it before. One guy in particular was really enthusiastic about it. It was a neat crowd and a very good night.

Unfortunately when it was all over, I was totally exhausted. I had a busy week preparing for soap, and recovering from Boston. I've been thinking so much about the whole experience up there meeting everyone - and still missing Paul. The last couple of days I haven't felt quite right, almost like I'm about to come down with something but no real symptoms yet. I'm hoping with rest and trying to take it easy I can fight it off. I can always hope!

We are off to the beach today for a wedding. We'll be spending several days there with Todd's family and I'm really looking forward to it. I really wish I felt better! I will have to listen to my body and will continue to nap and hydrate as much as possible.

Pictures from top: our soap display; Elaine and I at our first First Friday; front window of Father and Son.

Thursday, May 6, 2010

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.

Monday, April 26, 2010

Evolve



I think I found a yoga studio. I checked out this place called Evolve twice last week. It is fairly close to my house, they primarily teach flow yoga which is my favorite style, it is fairly small (get lots of feedback) and most of all the people were really nice. They also have a teacher training course if I were to decide to do that later down the road.

I decided to start out in a Level 1 class, just to know what I was getting into. The classes were good but my practice is really beyond what they were doing. For example, they were teaching starting variations of asanas of which I am working on the full pose. But I did enjoy it and there is always a lot to get out of every yoga class. I enjoyed both the teachers I had a lot.

I also went back to the Y for two yoga classes this week. There is one teacher there who I really like (the one who taught the chakra workshop I blogged about before) and a pretty difficult open level class on Saturdays that I really like, too. That class always makes me push myself.

I'm really happy with the yoga situation right now. I will probably see how much I start going to Evolve and then decide what kind of package (i.e. financial commitment!) I want to make to it. I have a feeling my Y classes will drop off, but I'm just not sure. Yoga studios are not cheap. To drop in for a class is usually $15; then if you buy a package it averages closer to $12. This has been a huge deterrent for me joining a studio (since the cost of the Y is so low and there are many good teachers there that I like) but I'm feeling ready to make the commitment.

In other news: went for two awesome bike rides this weekend (Spring!), been feeling really great, and the debut of 808 soap is set for May 7. More details on the soap to follow soon!

Saturday, April 17, 2010

808

I am pleased to announce that after months of deliberations, we finally came up with a great name and logo for our soap: 808! Not only did we like the sound and look of "808" (it's symmetrical and we have a really cool font), but we liked the idea of having a number - something that doesn't have other associations with it.

It doesn't seem like finding a name would be a hard thing but we really struggled with it. I don't think either of us knew what a long process it would be. Many thanks to our good friend and awesome graphic designer M. who put much of her time, creativity, and love into it. :) Oh, and in case you were wondering the significance of "808," it is the address of my soap partner and dear friend E. - that house is where all the magic happens!