GERD is the word

GERD or Gastroesophageal Reflux Disease (chronic acid reflux) is pretty common in people with CF. I don't have an official diagnosis of GERD, but I think that's just a technicality.

I can remember being in elementary school and complaining to my mom about "yucky burps" and being given antacids. I'm probably one of the few third graders that went to the medicine cabinet and took TUMS at will. My relationship with those heavenly mint discs continued well into my 20s when my CF doctor started me on a daily regimen of omeprazole which is a protein pump inhibitor. Taking these on a daily basis was a huge life changer, I no longer had stashes of TUMS in every conceivable location and I also found that my digestive enzymes worked much better because they weren't doing battle with excess stomach acid. I was even able to decrease the number of enzymes that I took at each meal. When you consider that those little suckers cost about $2 each, the fewer needed is better.

Unfortunately over the last few months I've noticed that I've started to get heartburn fairly frequently, so it seems that my omeprazole isn't working like it used to. This weekend was especially bad. Friday night I fell asleep on the couch and a couple of hours later, when I woke up to go to my bed I noticed right away that I had severe reflux. It was so bad that it was making it's way to my mouth and causing me to cough and retch. I ended up going back to the couch to try and sleep sitting up. Eventually it settled enough that I could lay down propped up and was able to catch another couple hours. Heartburn continued through the day and increased every time I ate. I also had pretty bad tightness in my chest, like there was a vise grip squeezing my heart & lungs. I contemplated going to the ER, but kept putting it off, not wanting to overreact to a bit of heartburn. Eventually it subsided a bit, and through Sunday it only acted up after I ate. So here I sit at work on Monday and it's still happening. I put a call in to my CF clinic, so I'm just waiting to hear back from them. Hopefully there's something I can do to get me through the next few weeks until my clinic appointment. But until then I'm taking my old friends every where I go.

Sugar Sugar

Having grown up in the 80s and 90s when there wasn’t as much known about CF and people with it weren’t living as long, the priority was gaining/keeping on weight. My whole childhood my parents were told to get me to eat as many calories as possible. They were told to keep candy in the house at all times so that I could eat it any time. Based on what we know today this sounds pretty terrible, but that’s just how things were done. Fast forward some years and I’ve spent the majority of my life eating anything & everything that I want. Unfortunately, I also happen to have a very strong sweet tooth and very little will power.

Blood tests are a regular part of clinic visits. They check vitamin levels, liver functions, and sugars, among other things. The last year or so, my sugars have been running at the high-normal end, so this summer my doctor had me do a fasting 2-hr blood glucose test. This entails a blood draw, drinking an orange flavored, super sugary drink, then drawing blood again at one hour & two hours to see how the sugar is absorbed into the body. I was able to find out my results during my visit that day as I had clinic scheduled at the same time. Well, my doctor read the results and said that I was officially at the high end of pre-diabetic. Cystic Fibrosis Related Diabetes (CFRD) is different from Type 1 or Type 2, but can be treated with insulin. Since I didn’t have diabetes just yet, I met with the nutritionist and went over how to control my sugar levels with diet. Ugh.

I had to give up all candy & soda and start making sure that every 2-3 hours I ate a balance of protein and carbs. My body still needs sugar, since my levels also tend to get really low, it just has to be the good kind. Eating all of the time wasn’t a problem since I pretty much snack at my desk all day long anyway, but having to cut out the junk food was awful. I craved it so bad. It doesn’t really help that the kitchen at work is stocked with candy & we have a soda fountain. They sat there and stared me down every day at lunch. And I have to say there were a couple of days that I went and stared longingly at the pantry shelves and had to talk myself out of having “just one”. I was counting the days that I’d gone without junk food and congratulating myself every day on a job well done. After about 7 days it started to get easier and I found some substitute things to eat that sort of satisfied my sugar needs.

At about this time I got my test results in the mail and come to find out that my doctor read the 1 hour test as my final instead of the 2 hour test, so my results were that I’m actually high-normal, and not even pre-diabetic at all (yet). Well I tried to convince myself to continue eating healthy, but my aforementioned low will power took over and I ended up saying a giant fuck it and started back on the candy & soda. All of it.

I'm making sure to drink at least 4 liters
of water a day, along with making
good decisions on my snacks.

Now it’s a new year and I’ve decided that I really need to get back on the no junk wagon. I’m pretty sure my body will thank me in the long run, but it’s still not easy. A little easier since it’s my decision and not forced upon me. I really don’t do well with being told that I have to do something, never have. 

I’m drinking a literal gallon of water every day and substituting all of my usual candy with fruits, veggies, nuts, cheese, and popcorn. I still have bad days where I want nothing more than to drink a root beer and stuff handfuls of Cracker Jack in my mouth, but I know that if I give in I’ll end up telling myself that I can have one thing every day and then it will spiral out of control again. So for now I eat with my back to the candy-filled pantry and pretend that my sugar snap peas are of the sour patch variety.

Alternative Medicine

During a clinic visit a few winters ago, while discussing ways to keep lung infections at bay, my doctor said that my option was to start a low dose antibiotic (azithromycin, I think it was) that I would take every day. When I said that I wasn’t too keen on taking antibiotics forever, her reaction was ‘Oh, I guess you like to take a more “natural approach” to your treatment’.

Well, now, I’m not opposed to going to doctors and taking prescription medicine, but being on antibiotics forever doesn’t seem like the best approach at this point in my life. I know that sometime down the road it may come to that, but for now I’d rather avoid that particular option if possible. I was a little put off by her tone and unwillingness to look into or discuss other means. Around this same time the owner of the print shop that I was working at became a doTerra rep.

I’m sure at this point most everyone has heard of doTerra, or any of the other essential oil companies that are being marketed on facebook by people on your friends list. After listening to my boss talk about how amazing the oils are I decided to try some for myself. I bought a few that I thought would be beneficial to me, such as Breathe, DigestZen & Peppermint, and after a couple months of ordering through my co-worker I decided to sign up for myself so I could get the discount. I won’t go into all of the drama, but let’s just say that having your boss be in your upline of a multi-level marketing scheme is not the best idea. I was told that I HAD to spend the minimum amount every month or her to make money and host so many classes and recruit more reps. Well, after using the oils and dealing with the drama for over a year, I wasn’t seeing the miraculous changes to my health that I was being told that I should be (according to my boss, I shouldn’t even need to take any prescription medicine, including my digestive enzymes as long as I was using the oils. For the record, I was not gullible enough to quit my normal routine, I had really only wanted something to supplement it from the beginning) so I decided I needed a break from it altogether.

Fast forward to a year and a half later, I feel like I’m ready to really give them another shot. I probably won’t do a lot of what I was told to do before, such as put the oils in my drinking water and spend a small fortune on the doTerra vitamins. But I would like to see if I can’t study it a little more on my own and figure out a way to use them that works for me.

I just got a diffuser so that I can have Breathe or Lavender in the air at night while I’m sleeping and I’ve also jumped on the Himalayan Salt Lamp bandwagon. I’ve had a lamp at home since last winter and I can’t with 100% certainty say that it’s helping my lungs, but the shelf that it sits on is dust free compared to others in the same room, so I know it definitely keeps the dust at bay. I just got a small one that I can keep at work since that’s where I spend the majority of my waking hours, to hopefully cut down on dust and allergens as well as help with the winter blues that I seem inclined to experience. I would love to be able to diffuse oils at work as well, but since I work in an open cubicle style office, I don’t think it would be very respectful to my co-workers. I’m going to give this some time to see what I think of these antibiotic alternatives.