A Fresh Start

I'm feeling hopeful at the moment.

On Tuesday, I went to our gym and cancelled our membership. Our friends cancelled theirs at the end of September and frankly, we haven't been there in a month. The main reason we joined that particular gym was so we could work out with our friends, because everyone knows it's best to have a gym buddy and help keep you going. But since that was no longer a factor, there really wasn't any reason to stay at that gym.

Right after I cancelled our membership there, I signed us up at a different gym. I realize that might sound odd, since we've been lagging at our previous gym, but we both want to make going to the gym part of our lives. Last week, we went to check out this new gym right down the road from our house. Cleanliness and germs were becoming my biggest gripes of our now-previous gym because no one EVER wiped down equipment (obviously, that has to be a concern for me.) There weren't any wipes, to make it easy, there were only a handful of spray bottles with some sort of cleaner in them, and no one ever used them.

After visiting the new gym, which was clean and emphasized people wiping off the machines, our old gym looked grimy and kind of gross.

I think I'll feel more comfortable in this new gym, and it is most definitely more clean and less germy. Furthermore, it's right down the road from us. Yes, we live in a small city but still. We don't even need to drive through any stoplights to get there; if we don't want to we can take all roads through the subdivisions around our house! And if Jarrod ever wanted to, he could go before work because he wouldn't be backtracking and adding drive-time.

So right now I'm feeling hopeful. Maybe changing up the scenery was just what I needed to give me a new kickstart. I was recalling the other day how it felt to lift weights and how accomplished I felt when I could start to lift more. It was a good thing. And I can't deny that I felt better when I was lifting weights at the gym, too. I'm excited to start getting back to that. I've gone to the new gym two times, and I am hoping to keep my momentum going.

Our Experience with Greenies: A Cautionary Tale

Yesterday I bought a few of those Greenies chew treats that are supposed to clean a dog's teeth. I wanted to give them a shot because we are not good about brushing Josie's teeth. I always intend to, then something comes up or I really don't feel like it because it's such a battle with our dog. She does NOT enjoy it and wriggles and fights to get away, not to mention tries to lick all the toothpaste off or bite the brush when you're trying to reach the back molars. In the end, her teeth barely even get cleaned—though I guess 'barely' would still be better than 'never'. 

Anyways, I did lots of research about Greenies. If you're unfamiliar, they're a small toothbrush-shaped 'treat' you give your dogs that helps clean their teeth. It's not a hard treat but bendy and flexible and it's mostly made of wheat.

I'd heard the cautionary accounts about Greenies which ranged from 'my dog got sick' to 'my dog had to have emergency surgery because this thing got stuck and caused intestinal blockage'. As with anything, on the flip side, there are thousands of people who have no problems and their dogs love them. So what do you do? I went to Greenies website again yesterday to read about what they said about them, which in short is that Greenies are good for dogs, safe for dogs, with one important disclaimer that stands out to me: as long as they're chewed up correctly. 

The dog is supposed to chew on this thing and, ya know, chew it up, not bite it off and swallow it (ergo, intestinal blockages.) So I gave one to Josie last night... and she ate it in three chunks. Not cool. I tried to reach in her mouth and grab out the last piece, but it was no use. Then I began to worry a little. Thankfully, she showed no signs of illness within an hour; she hadn't vomited, she wasn't acting lethargic, and she wanted to play. We went to bed as normal, and I was praying she'd be okay, or that if she was going to get sick in the middle of the night, I'd wake up for it. She made it through the night and went to the bathroom this morning like normal. Yay. All good signs. 

I held back her breakfast just to be on the safe side. She was very confused and followed me around the kitchen a lot, hoping that one of these times I'd realize I forgot her breakfast and would go and get it haha. Poor thing. 

I thought we were in the clear but then around 11:00 she vomited. It was like it hit her all at once: she stopped dead in her tracks, head down, and eventually threw up. I called the vet and explained and they said to bring her by. We did blood work and an x-ray, which thankfully all came back fine. But based on her having a fever, plus large pockets of gas in the x-ray, the doctor said she probably has inflammation and gastritis. I've got some meds for her to help with her tummy and I'm going to watch her for a while and make sure nothing else crops up, plus encourage her to drink so her fever comes down sooner. 

Needless to say, I'm not buying Greenies again and I'm going to return the two individual ones I have left. I hate to be yet another alarmist on the internet, but I wouldn't recommend these anymore either. Right now I'm kind of guilt-tripping myself as to why I ever thought this would be a good idea. I've been hesitant about these for a while, and I should have just stayed that way, steered clear, but it's over and done. No use dwelling on that. I'm thankful that Josie is okay and her problems aren't any worse. 

Friday Fast Five

Five little things!

Number One
Josie is now on a diet, haha. I've kind of felt she was getting a tad heavy when I picked her up, so I weighed her the other day, and she is about 2.5 pounds over where I'd like her weight to be. So we cut back her food and plan to play with her a little more. I know she's not that much overweight, but I figure we might as well get her weight back in range before it becomes a problem.

Number Two
I'm really becoming unhappy with Facebook. This isn't going to be the usual Facebook rant of mine, but I've been noticing more and more items in my feed that I absolutely DO NOT care about. More often than not, it is showing me posts of things people liked or commented on from other people's pages. Why would I care that my friend commented on a post from one of their friends, someone I don't know?

I think I know what Facebook is trying to do: they're showing you these in hopes that maybe you know this person too and will friend them. But I don't know these people, so I don't give a care. It's getting kind of old.

Number Three
This afternoon I played ball with Josie outside, and while I was sitting there a hummingbird came by and got nectar from the rose bush!

Number Four
Please allow me a quick whine about my CF... It is a beautiful day today, cooler temps are on the way! I would love to sit outside and enjoy it this evening, but the problem is so does everyone else... with their fire pits. Which then means I'm stuck inside. Or I'd like to open up the windows and air the house out, but I can't. Even being many feet away from a fire, if I can smell it, then it will bother my lungs. I can't be around fire in the slightest. Trust me, I wish I could. I'd love to sit around a fire on a cool night as much as the next person. It's small everyday things like this that remind me why I really dislike CF. *Sigh...

Number Five

I'm not a very emotional person, but I shed a few tears this morning as the moment of silence and beginning of memorial services in NYC and DC were shown on the morning news. For some reason, I was overcome with emotions about the gravity of that day. 

Follow-up: Something Unexpectedly Awesome

My dad called me saying that he had something to drop off for me.

When he came by, he had a blue T-shirt in his hands. It was for me. 

Remember that biking event that I helped out with, and the team that came through this year, raising money for cystic fibrosis? Turns out... they sent the bike shop owner a shirt with their team logo and with a note that they wanted me to have it. He passed it onto my dad this evening. 

How thoughtful! I was touched, and felt kinda special that they remembered me. I intend to post a picture to their Facebook page of me wearing it with a note of thanks. It really made my day. 

Godspell at Church

Did anyone else think of Godspell with the second reading at mass this weekend?

Dearest brothers and sisters: All good giving and every perfect gift is from above,

coming down from the Father of lights, with whom there is no alteration or shadow caused by change.   James 1:17

It's been a while since I watched the Godspell movie from 1973, and I really forgot how hippy-dippy it is; possibly because the last time I saw it was in grade school... I think. Micki, our music teacher, let us watch it on days when we had a sub or on "popcorn days", which were days we earned to watch a musical movie. This scene, out of context, is laughable. But great music nonetheless! Here's the video (email peeps, YouTube clips don't show up in the email, so you'll have to view the post on the website to see it if you want):

I Don't Have Time

I can't take credit for this idea, but I had to pass it on.

Instead of saying "I don't have time" try saying "It's not a priority" in its place.

• It's not a priority to clean my house.
• It's not a priority to check up on my family.
• It's not a priority to read a book.
• It's not a priority to just sit and talk with my spouse.
• It's not a priority to exercise.
• It's not a priority to keep myself healthy, or get healthy if I've been lagging.
• It's not a priority to do something I truly enjoy.
• It's not a priority to call you back.
• It's not a priority for me to pray.

Kind of changes the way it sounds, doesn't it?

Obviously, there are times where we simply "don't have time." But if I'm honest with myself, it seems the reason I continue to neglect certain things is because I'm just not making it a priority.

Pick something you've been neglecting and work on it. I already have something in mind for myself.

There's Somethin' In the Water

Last week on Friday, our town was placed on a boil order due to water samples coming back positive for E coli. We boiled water, bought some ice, bought a few gallons of water, and didn't wash a lot of dishes. You could still use your dishwasher—we put ours on sani-rinse for extra coverage—but if you washed your dishes by hand you had to then immerse them in a tub of water-bleach mixture. I don't have a tub large enough for pots and pans, neither do I have a ton of space to keep the tub and then lay out all of these drying dishes. So yeah... we used our dishwasher mostly.

I would say that the presence of E coli shouldn't come as a surprise to anyone. Our city has had coliforms present in the water off and on for the past year. Coliforms are not harmful, but they are an indicator that there may be a bigger problem/worse bacteria in the water. That's, at least, what the city told us in our water bills because they are required to let us know. However, after looking into the issue a lot and talking to my doctor on Tuesday, they're not quite as harmless as made to sound. Coliforms show up easily in a water test, because sometimes there is bacteria there that is so small it is hard to get a good reading on it. My doctor also brought up the potential problem of inhaling the microscopic water droplets produced when you turn on a faucet, which is pretty unavoidable too, as I am not going to take a bath all the time or quit turning on taps. 

So the city chlorinated the system over the weekend, the tests came back negative, and our boil order was lifted yesterday, Wednesday. Woo hoo!

Then I read an article in the newspaper about the city's plans to NOT chlorinate the water henceforth. The city administrator said "We think we have quality water", and that it wasn't a matter of cost, but they basically didn't feel they had a problem. He conceded, though, that the EPA and Dept. of Natural Resources might not agree with that, and that the DNR could force them to do it if they felt they need to. Now, let's recap: we had one positive test for E coli that caused the boil order, and 5 out of the last 12 months of tests coming back failing due to coliforms in the water. That works out to be just over a 40% failure rate. I'm sorry, but that does not sound like "quality water" to me. We were placed on the DNR's "chronic violators" list because of it, too.

I was furious after I read this article. Prioritizing the taste of the water over making it healthy and safe to drink is absurd. If it truly wasn't a matter of costs, then not doing it because you just don't want to is flat out stupid. I would much rather, 1000% times over, have chlorinated water and know without a doubt that my water is safe and healthy to drink than have to sacrifice a little bit of taste with the chlorine. (Chlorine kills bacteria in the water, and that's why many municipalities use it. There are other ways to disinfect a water system, but they cost more, so chlorine is the most common.)

I have never gotten involved in politics, but after reading that the city was refusing to consider disinfecting their water, I started drafting a letter to the editor, letters to our city councilmen, and a letter to the DNR, and looked up when the next city council meeting was in case I wanted to attend. I was serious about this. I'm just thinking if I ever get more sick than I am now, or whenever I receive a transplant down the road, I want the peace of mind to know my water isn't going to potentially kill me.

For one, when we were notified about the coliforms in the water, it was after the fact. Or maybe during. Or who knows. All we were told was that a test failed somewhere in the city at some point in the last 30 days. I think that's pretty standard protocol, but it's not very informative when you really think about it. They also never specified if they found coliforms, total coliforms, or fecal coliforms, all of which are different. Some coliforms come from poop, some coliforms come from the earth (but so does pseudomonas (it's in the soil) and that's pretty much my enemy number one these days.)

Second, the city received the boil order notice last Thursday evening, yet didn't notify citizens of it until Friday around 10am. They have obviously received a lot of heat about that one.

Furthermore, I have lived in places with chlorinated water and I honestly didn't think it was bad. Yes, we've all drank water that tasted a lot like chlorine, but it sounds like once you strike the proper balance and have the right amount in the water it won't affect it that much. Wentzville and Maryville University had chlorinated water and I barely noticed. And if it bothers you that much, well that's what Brita pitchers are for.

Then today, the DNR gave a mandate ordering the city of Washington to chlorinate the water. I was so happy when I read it. Based on the comments on Facebook I received during work, most people were against it and unhappy about it, but there were some who felt like I did in that it is better to have to put up with the chlorine than have bacteria in it. If the city wasn't going to do it, I'm happy to see that the DNR made it happen.

CF Awareness

Last week was the annual Race Across America, aka RAAM, which is the crazy extreme bike ride across the entire country from California to Maryland. As usual, our town was along the route and once again the local bike shop was one of the time stations. Riders and their support crew from all over the world came right through our town. I think that's just so cool.

Our time station here is unique, because it's actually a destination instead of just some mile marker or a tent along the side of the road, and I have personally heard people say it's like an oasis and they think they're dreaming. The volunteers provide food, drinks, a little pool to cool off in, not to mention the bike shop to fix things, and—hopefully—good company and a change in the faces you see every day.

Last Wednesday I decided on a whim that I would help out for the afternoon. I talked with people from Australia, Brazil, Japan, and Britain. As Vicky, a lady who does this every year for as many hours a day as she can, says "I can't travel the world, but here the world comes to me."

So this one crew came in, and I'm talking to this guy, welcoming him and letting him know where he can find the food and drinks, the usual drill. He holds out his hand and says "Hi, I'm Jay." I said "I'm Jamie," and he chuckled and said "Oh, that's easy." He was their head crew chief, I found out, and I was asking where they were all from. Their group was from everywhere, from Arizona to New York, to Florida, plus a couple Europeans. He himself resides in Colorado.

I then asked what charity they were riding for and he says "Cystic fibrosis."

I think my mouth kind of fell open, I stopped and was like "Really?" And he, confused a little, said "Yeah."

I then told him "I have CF." He kind of put his arm around me and had the same awestruck facial expression I did when he initially said it. I almost couldn't believe it, and he walked me over to show me their van and there was the CFF logo right on the side.

So then he was asking me about what gene mutations I have, if I did the vest, how I'm doing, if I'd be able to take any of the new drugs they're coming out with, which are all great questions and clearly this guy actually knew about CF. I told him about my recent hospitalization and said I was doing well and getting back to the gym. I asked how he got involved with raising money for CF, and I believe he said a friend of his has a son with CF.

He wanted to introduce me to a bunch of people in their team, he said they'd want to meet me, and we obviously told them that I had CF. I thanked them for riding and such and they were all so nice. You hardly ever meet a group of crabby people during this RAAM, but this group was really fun and groovy. They hung out for a while too while waiting for their teams—typically some of the crew will venture ahead to take a small break when they can, so they were ahead of the people actually riding the bike.

This is Jay, my new best friend that day.

A little later Jay and I were chatting again, and he said "I'm sorry, I'm kind of tearing up. This is just..." and he shook his head in disbelief; I said "I get it, I think this is so great and I am SO happy we were able to cross paths." They were called Love, Sweat, and Gears (and in bike nerd-ness, they were also cool because they had a team riding on tandem bikes, which you definitely don't see every day.)

Augh... it was just the coolest thing! I mean, how awesome that I just happen to be working at a time station for this random bike ride at the exact time that a team comes through and they're raising money for CF? And I happen to strike up a conversation with their crew chief? I mean, how awesome is that!? It was definitely a God moment that all of this came together, clearly we were all meant to meet each other. I still can't get over it... SO COOL!

One of the tandem teams.

Fast-forward to last night, and I went downstairs to treadmill, I turn on the TV and was going to watch American Ninja Warrior while listening to some tunes. So, I can't hear the TV but I see this guy walk up and it says he's from St. Charles, MO, so hey that's cool. And he is wearing a shirt that says "CF Warrior" on it. Obviously that registered in my mind, but CF can stand for a lot of things so I didn't take much pause. Then they launched into his back story, like they do for some contestants on shows like this, and he's talking about his cystic fibrosis. I pulled out my earbuds to listen and wow, also a cool story/God moment.

He talked about how he decided to get in shape and exercise and doesn't need medicines as much to manage his disease (you have to be incredibly fit to do these ANW things [they make it look so easy, but it's incredibly hard stuff.]) And obviously, the commentators honed in on the inspiration part of it and such, but ya know what? It really was inspiring. For me, at least. Especially since I saw this right as I began my own workout, it inspired me to kick it up a notch. And I did: I ran 2 1-minute intervals along with the rest of my walk on the treadmill, and walked/ran a total of 1.35 miles in 30 minutes. Woo hoo! I had a short coughing fit when I was done, but I felt GREAT afterward.

It's Been A Long Week...

I had a checkup yesterday and we stopped my meds. Thank you Jesus. I was going to demand that's what we do, but my doctor said it before I even had to argue my point.

Oh man, it's been a rough week. I have been dealing with side effect after side effect. It all started last Tuesday with a stomach ache. From there it just continued to go downhill.

I had to have blood work done on Thursday for kidney functions and med levels, got there and found out they can't draw from ports in the lab. We could call up a nurse from the ER, but it might take an hour, and it was a timely thing, so I said no. I don't know what that girl did, but it was by far the most painful blood draw I have ever had in my lifetime. I was yelping, crying, and almost screaming in pain. It was awful. She didn't hit a nerve—I know what that pain feels like—but it almost felt like she was stabbing my muscle or something. Ugh! From there, we found out my med levels were WAY too high, and non-surprisingly my kidneys weren't doing great because of it either. So, not great news. We adjusted things and lowered my doses, which made my schedule a bit better. I also drank nearly 2000 ml (aka 65 oz.) of water Thursday to try and help the process.

All told, I had one or more side effects going on all the time for the entire past week:

• abdominal pain
• gastritis
• back pain
• lethargy/tiredness
• stomach cramps
• depression
• chest pain
• swollen lymph nodes, neck pain
• weakness

...and that's just partial list. It's been a pretty difficult week. I have never been so aware that I was essentially having to poison myself in order to get better. 

Lesson learned: If I'm ever on this medicine again, stay in the hospital for the full duration. 

Yesterday I woke up with chest pain—centralized around my heart area—and that was the final straw, I had my mind made up that I was DONE; no more of this. At this point, a few more days is not going to do me any good. What I need is to EAT normally again and EXERCISE normally, which have both been compromised since I've been feeling like crap. 

Today I'm already feeling a bit better. My chest pain is subsiding. I am also feeling much better mood-wise, and you can even hear it in my voice. My mom says I have more color in my face already, too.

Here's hoping for an even brighter day tomorrow!

Back at Home

Hi folks! I figured I was due for an update here.

I went in the hospital last Monday and came home two days ago. Things are going fine, though this time I'm dealing with a super resistant strain of germs. There were two bugs in my system this time, like usual, and one of them was resistant to practically everything except for two medicines, and even then it wasn't 100% sensitive. My doctor is currently on a trip to the holy lands, so the pulmonologist we also work with was filling in. I like this doctor too; he is aggressive in treatment and in getting things taken care of. He's also fairly easy-going, flexible, and kinda funny too.

So this doctor had been working closely with a pharmacist there to figure out what drug (of two choices) would be best case for us. Oh, and did I mention I'm allergic to both of the options? So in addition to that, I had to go through yet another desensitization process for the med we chose, which is a penicillin. As a crash course, if you're unfamiliar with that term, "desensitization" is a methodical, timed out process where they slowly introduce an IV drug into the system. It starts with like 0.01 grams, and you work up to a full dose, and it lasts about 5 hours. I met the pharmacist a couple times too, and he did a whole lot of math and analyzed things in my system that I don't even know about and chose the best possible way to deliver the drug, which would be every four hours. Typically it's every 6 or 8 but, again, for reasons beyond my scope of medical knowledge, he figured out that every four hours would be best. But... only for 30 minutes every time. So whew, not that bad.

All of that went fine and I have not had any sort of reaction at all to this day.

I came home this most recent Monday, two days ago, and have been doing home IVs. It's been going fine, but my schedule is demanding. I'm hooked up to meds for ten hours a day. The meds come in these little balls which slowly deflate, pushing the medicine in thanks to gravity or something like that. So granted, it's not like I can't do anything while these are going in, but I'm basically under house arrest. Not to mention, like I said, my one med runs every FOUR hours, and instead of a half hour like in the hospital, it takes one hour here at home. So the most time I ever have between doses is three hours, and yes this includes overnight with sleeping too. So yeah... demanding.

I'm feeling better, though still would like to get even "more better". I'm not super concerned about the resistant strain of bugs I'm growing right now. Maybe it's because I worked through all of those emotions last time when we thought it was going to be uber resistant, and it wasn't, but when I look through my entire history of cultures, each one is different. I am hopeful and have faith that next time, we'll see a different bug as well and will treat it accordingly. 

But I'm glad to be home and sleeping in my own bed. Jarrod had an idea to figure out a way to set up my meds and such in our bedroom, and I bought one of those plastic storage drawer thingies on wheels, rolled it in next to my nightstand, and tried it out last night. I must say, I think this is going to be one of the best things for handling this (I have to do these thru next Monday or Wednesday.) I feel much less tired than I did yesterday. There's just something about only having to wake up and walk a couple steps to hook up to the meds, versus walking across the house to the kitchen where I used to always do everything with my IVs. I don't have to wake up as much, in a way, so falling back asleep doesn't take as long. So props to Jarrod for coming up with that!

I'm also glad to be eating my own food, or whatever I damn well please (AND I got popsicles just in time for the hot weather! Popsicles should be enjoyed at any age, don't judge lol.) The food at the hospital has sadly gone WAY downhill since I first started going there. They've removed many choices from the menu, and the quality of the food has also gone down. For most people, this wouldn't be a big deal because their hospital stays are short. But for us CFers, who are there for 1-2 weeks, it's terrible. You can tell they're really cheaping out on the food, which is sad. No, people don't expect the food in a hospital to be amazing, but these days there are few excuses for it to be borderline inedible. In addition to that, the people working in the kitchen suck. I don't know if they just don't care, if they have no one doing quality control, or if there's a communication issue, but at least once a day my order was wrong or missing something, and I heard from the nurses that this is common for everyone; having that many mistakes every day is ridiculous. It's frustrating. So even though I'm not quite feeling up to cooking a bunch here at home, since I'm trying to get sleep when I can (three hours at a time), I'm still SO happy to get away from the hospital food.

That's about all I've got. I'm happy to have my dog here with me. I think she is tired because she wakes up with me when I get up for my meds during the night. So she's been a pretty lazy, sleepy dog, but that's okay. She was excited to see me when we got home, which warmed my heart so much.