Breathing Deeply: My Life With Cystic Fibrosis

I was scheduled for sinus surgery last Wednesday. Dozens of reasons exist for why that never came to fruition. We rescheduled the surgery for this Wednesday. Today I got a call from the clinic that looks at my blood-work prior to surgery and they said some of my numbers looked abnormal so they want me to come in for a work-up on Thursday. That means surgery is once again canceled.

In the meantime I have a ripping sinus headache that could very well be part of a sinus infection. I'm running a 102 fever, so in a way I guess it's good that surgery is postponed again. Even so, I'm frustrated. I'm trying to remember to lift up all my anxiety and frustration to God because He can deal with it much more easily than I can. Perhaps it was a "God-thing" when the Twila Paris song "God is In Control" came up on my CD player as I hung up the phone receiver after talking to the doctors.

I don't know what God is doing with this season of my life. Maybe it's yet another way that He's telling me to pause and take better care of myself. Maybe He's calling on me to throw my precious schedules and time tables into the trash bin and trust His timing for what He has for me. Perhaps I need to get better at actually placing my trust in Christ alone rather than just paying lip service. I sincerely want my source of strength and hope to be Christ alone. I don't know why letting go of my selfishness is so difficult.

When I'm not feeding my face or watching TV with my husband, I'm usually writing. Whether it's writing poetry just for my own enjoyment or drafting an article for a client, I love to write. The world of freelancing can be tough, especially since I have to actually go out and acquire the work I wish to do each day. It doesn't just fall into my lap. The other aspect of being a freelancer is that in order to have clout in the writing world, I need to develop a fairly extensive set of what are called "clippings." Clippings are articles I've written for a variety of sources. The more people read them the more my reputation as a writer grows.

Below is a short list of clippings I've written over the past year or so about life with cystic fibrosis. Some are very similar to what you'll find on my other blog, http://UnderstandingCysticfibrosis.blogspot.com but not entirely. I encourage you to educate yourself about CF as a disease and how it affects an the lifestyle of individuals and families.

As always if you have any questions about CF or would like to know more about how I cope with it, please don't hesitate to send me an email.

You can find all of my published articles here: Associated Content Producer, Lauren Beyenhof
and here: Helium Content Producer, Lauren Beyenhof

Please leave comments either on the articles themselves or here back at the blog. Happy reading!

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A Day in the Life of a CF Patient
Aside from all the medications and airway clearance treatments, a day in my life as a cystic fibrosis patient really isn't that different from anyone else's day.
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Four Secrets to Living Well With Cystic Fibrosis
Life with cystic fibrosis is a challenge, and coping with it involves more than just a positive attitude.
View more »

How to Control Cystic Fibrosis
Controlling cystic fibrosis is an ongoing challenge. By making a habit of incorporating the five different aspects of control in this article, life with cystic fibrosis becomes that much easier.
View more »

The Benefits of Exercising when You Have Cystic Fibrosis
The risk of dehydration in patients with cystic fibrosis is a legitimate concern, however, it is not reason enough to exclude people with cystic fibrosis from participating in as many normal activities as possible.
View more »

Cystic Fibrosis Can Cause Clubbing of the Fingertips and Toes
Finger clubbing is a benign symptom of cystic fibrosis and other obstructive pulmonary diseases.
View more »

Top 5 Myths About Cystic Fibrosis
As doctors have learned more about cystic fibrosis, common misconceptions about the disease have been debunked.
View more »

Cystic Fibrosis and My College Experience
The pursuit of higher education is a challenge. My experience was even more challenging because I have cystic fibrosis (CF). This article is just a brief description of how I learned to balance my health and academics.
View more »

Guide to Navigating a HMO as a Person with Chronic Illness
Written from the point of view of someone who utilizes a HMO, this article includes tips for selecting healthcare coverage and proceeding to gain access to specialists. It also emphasizes the need to be your own advocate when it comes to insurance.
View more »

Yesterday was a bit of a rough day. I was on the phone for hours trying to get a new surgery date scheduled and confirmed, as well as deal with several other CF related paperwork that had cropped up. (Believe me, other than the mucus we cough up, CF is not a "green" disease.) It was all quite exhausting. By the time I was finished I was mentally and physically drained and just wanted to take a nap. I fell asleep and woke up with a fever. Great. 100.8

I'm very sensitive to changes in my body's homeostasis. I start feeling lousy and sickly at a mere 99.5 degrees. At 100.8 I was dizzy, crabby, disoriented and plenty else. I also had a horrible sinus headache that was getting worse by the minute. Brad and I decided that going to our church's small group meeting would be too much stimulation, so we opted for a quiet dinner at Marie Callender's instead. We had a nice meal there. I had a nice meal twice.

By the time we got home I was throwing up. For a few hours I got sicker and sicker and finally it felt like the worst was over. I ended up sleeping in until about 4 this afternoon. I'm still not at my best. I'll probably go back to bed again soon. Fortunately today I've managed to keep everything down. I'm drinking lots of gatorade to keep from dehydrating. All in all I feel gross.

Brad's such an incredible man. He's been holding my barf cup for me, making sure I've got on clean pajamas, and has tucked me in and back into bed a number of times throughout the night. Today I told him "thanks for loving 'gross Lauren'" and he replied "I don't love 'gross Lauren,' I just love Lauren and sometimes you have bad days."

I'm hoping and praying that the bad days with CF will be fewer and further between once we take care of my sinuses. I hate the frustration of not knowing how I'm going to be feeling from day to day. That makes it hard for me to "seize the day" when good ones come, because in the back of my mind I feel like if I overdo it on a good day, I'll have to pay for it with 3 or more bad ones. It's exhausting and depressing sometimes and like any normal human being, there are days when it overwhelms me more than I care to admit. I don't like it when my weaknesses take control, and I especially don't like it when other people can see those weaknesses. It makes me glad that I have a God who not only knows and sees my wimpy moments, but he cares about them and can bring me the peace I need in the midst of them.

Let me start by saying that this week in general has been something of a pain in the rear when it comes to doctors appointments and so forth. For the last few days I have been back and forth on the phone between my CF Clinic and my ENT's office trying to get everything straightened out so that I could have sinus surgery today. I did EVERYTHING I was asked to do. I called every phone number and department that needed confirmation. I made sure that the ENT knew that I was not a pediatric patient but an adult CFer. There's plenty more to the story, but it's not pretty so I'll leave it out.

Well, after all of that we finally got my surgery scheduled. Yesterday morning I got a call from the surgeon saying my surgery was confirmed for 5pm. 3 hours later I got a phone call from the same people saying my surgery had been canceled because they never got the paperwork from my doctor who was ordering the surgery. I called the CF clinic to chew them out and say "what the heck?" Hours later surgery was back on, but I was going to have to have it as an inpatient basis and have the hemotology/oncology clinic run some tests. (I'm a bit of a bleeder and my doctors wanted to run all the necessary tests to see what they might be up against.) In my opinion, those tests were all things that should have been run MONTHS ago when they first said I needed sinus surgery.

Well, today was the day scheduled for surgery. Or rather, today was the day that surgery got unscheduled. Brad dropped me off at the hospital around 8:30 where I waited by the admissions office for them to tell me I could be checked in. I waited. I waited. I waited. They came out to tell me there wasn't a bed for me in the hospital (an situation that has and will continue to absolutely baffle the heck out of me) but they were working on finding one. I waited and waited some more.
No bed. Also, by that time it was too late for the hematology folks to run their tests and have the answers in time for a 5pm surgery time, so I was sent home. No surgery. No tests. Just one big crabby CFer who had been NPO (i.e., abstaining from food) since 4:30 yesterday. All in all, not a good situation.

I know it's not entirely the fault of my CF clinic that this happened, but there are things they could have done much earlier in the game to get this smoothed out. Also, the hospital administration continued to mystify me. Whenever I'm told I need to be hospitalized, I have to wait a minimum of 2 days for a bed to magically become available. Part of this is because I have cepacia and need to be in a private room. Having cepacia makes me feel like I am the bottom of the food chain.

Another thing I have a real problem with is why our CF Adult Clinic is so short staffed. We recently lost another nurse, and we only have 1 doctor for over 120 patients. In my opinion the Cystic Fibrosis Foundation should really step it up and work on making sure that their accredited clinics can provide decent quality of care for its patients.

I think they should reexamine the way they allocate funding and spend more of it on adult clinics, and maybe back on on therapies for now. After all, the new drug therapies are really only targeted at the younger population of CFers. Adults like me get left in the dust, struggling to find out place. I know I'm not alone in my thinking. Adult CF care is miserably behind the times when compared to the pediatric clinics. My hospital is, according to the US News and World Report, one of the top 10 hospitals; but you wouldn't know it based on how the CF clinic looks and operates. We have clinic once a week in the evenings. Patients who need to be put on IVs are deferred for a few days until they can be admitted to the hospital. In many cases, we're just started on home IVs and brought into the hospital later. It's stressful, exhausting and hardly conducive to living a normal life in spite of CF.

My experience today with the sinus surgery getting canceled was just a symptom of a much bigger wrong that's going on in the medical community. I shudder to think what my experience would be like if I were less of a self-advocate or had lesser insurance coverage.

It's been awhile since I've had a sleepless night. I think tonight my problem is that I napped for far too long this afternoon. Well, that and there's a lot on my mind. It's one of those nights where I can't really fall all the way asleep, so I just pray all night. (With the exception of taking a break to blog for a bit.)

Things on my prayer list right now are my grandma. She just had surgery and is in the hospital. It was quite a sudden thing to have happen, so I'm praying that her body can rebound from the ordeal quickly and easily. She and grandpa had plans to go visit my cousins later this week. I don't know if they'll still get to do that or not.

I'm also praying quite a bit for Brad's grandparents. They're at a point in their life where it might be better for them not to be in their own home. Brad's mom and her brother are having to make some pretty major decisions about what to do for their parents. I pray that the right decisions will be made and that there will be peace about them.

Next on my prayer list is my husband. I'm so thankful for him. He has been such a tremendous source of encouragement and support during my time on disability. He's never pressured me to go back to work. He's been there to hold my hand whenever I'm upset by the situation. He's also been wonderfully patient with me as I've gotten into the routine of being at home more often. I want to do better at being a good wife for him because he deserves it. He makes me so happy and I want him to feel that way too.

Over the last few days I've been praying a lot for my doctors. I am tentatively scheduled for sinus surgery on Wednesday, but there's a possibility that might not happen. My doctor is concerned about doing it as an outpatient because there might be complications because I have a long bleed time. I'm praying and hoping that there will be a way for me to have the surgery inpatient and not have to wait any longer for the procedure. I've been in extreme pain from my blocked sinuses for long enough. I'm trying to stay away from needing the vidodin, but there are some days when the pain is so bad that nothing else helps.

There are many, many other things on my prayer list. I feel blessed to know that I serve a God who knows every word that's on my heart before I even think it. He knows what situations are going on and how they need to work out. He always brings about good things in my life, even though I may not always see them that way at first. God is certainly a mighty and generous God. It's a privilege to be able to approach his throne on behalf of my family's needs.

That's one of the things I like most about God. He is this awesome being; he controls the universe, its times, its seasons, yet in the midst of all that he does, he has time to listen to me. I am His child and every bit as important to him as the ocean currents and the political situations in the Middle East. He not only takes time to hear me, he wants to hear from me. A relationship with Him is something I hope I never take for granted.

It's been a few days since I've blogged, but that's because my body has been flat out exhausted. (Hooray hormones.) I had a really nice time with my friend Katie the other night. We had dinner together at my favorite place and then, almost on a whim I said "Do you mind going with me to check out what it costs to join that gym over there?"

True friend that she is, she stuck around for moral support and politely listened to the sales rep go through all the benefits of membership. I was truly amazed at how much equipment they had there--the place didn't look gross or overused at all. It also wasn't one of those gyms where all the "pretty people" come to workout. You really can't see the inside of the gym through the front windows, which I think added to the safe feeing I got there.

After going through all the info and answering my questions I said I was ready to sign up. I used to go to that gym years ago when I was in high school, so I felt comfortable with their policies. I got a really good deal, and it's a month-to-month package with easy cancellation. That part I liked. I hate being boxed in.

I even signed up for some sessions with their kinesiologist. Woohoo! I'm looking forward to coming up with a plan that will help improve my lung capacity and bulk me up. I just can't seem to do it on my own, so it's time to call in the pros.

Brad's even going to join up too! I'm so excited about that. The way I was explaining it to him was that when we do things together like work out, it ceases to be "Lauren doing something for her health" and instead turns into "Us making healthy choices as a team."

The other cool thing that's coming up next week is that I get to have sinus surgery! YAY!!!! I am so tired of this yucky headache all the time. My sinuses have been constantly dripping snot down the back of my throat an into my tummy. UGH. I've thrown up almost everything I've eaten in the last 3 days. I hate when that happens. I keep drinking Gatorade and stuff like that to help with potassium.

Tomorrow my mom's coming for a visit. I hope I'll be in better shape by the time she comes.

The next leg of our trip wasn't exactly harrowing, but we were certainly on an emotional roller coaster the first hour or so of the trip to upstate. We had been informed by Amtrak in a phone call earlier in the week that our train was not going to go all the way to Saratoga like our tickets said. Apparently there was work being done on the track, so we could only go as far as Albany. From there we'd have to take a bus to Saratoga. We were told to visit the ticketing counter or customer service to see what we had to do to exchange our tickets for two tickets (one for the train, one for the bus.)

We found the customer service desk and we were told (in a rather harsh tone I might add) that our train was CANCELLED because of the hurricane. The man at the desk said the best we could do was get a refund on our tickets and try taking the bus or something. We were dumbstruck. Hurricane Hanna had cut a wide swath into our plans. Dejectedly, we got in line to exchange our tickets. While waiting we discussed the possibilities. Would we have to spend the night at the train station? Would we call Peter and Jeanne to come get us? Slowly we shuffled forward.

When we came to the ticket counter we were told that our train had NOT been canceled. Line 291, which was ours, was only going as far as Albany, but that was the plan for which we were prepared. It was line 91 that was completely canceled because of the hurricane. Our proverbial sails had been reinflated and our good mood and excitement quickly returned.

It rained the whole ride to Saratoga, but it was a comforting sort of rain that lulled us to sleep on the train and the bus. Impressively, the bus arrived at the same time we would have expected had we taken the train all the way. I was glad to have our trusty "65 Roses" umbrella along.

Our friend Jen picked us up and greeted us with wonderful hugs. It was so great to see her! We have been friends with them for about 5 years, most of which has been long distance. They only lived in California for a short while before moving back East to be near family. We visited them 2 years ago, and being back with them felt like nothing had ever changed. Of course, plenty has changed! Their little boy is almost 3, they have a little girl, and are expecting their third in January. It was exciting to see how God has blessed them.

We love being involved in the lives of our friends' kids, and this trip was no exception. We could hardly wait to give the kids the gifts we brought. The kids were thrilled. We had been warned that the kids might not like us because we're unfamiliar, but that was no problem once the gifts were opened! We had so much fun playing with them.

Watching Brad with the kids was really heartwarming and precious. He jumped right in there and played rough with Josh, and treated Hannah like a little sweetheart princess. When we all went to the park on Sunday, Brad didn't hesitate for a moment to help wrestle the kids out of their car seats. He held their hands, carried them and was basically and honorary uncle for the weekend. I got some really adorable shots of him with Josh at the park.

We ended up going to Congress Park in Saratoga on Sunday instead of going to church, because we found out that there was a recently diagnosed CFer in the congregation. Since I have cepacia, I had to stay away. Our friends were quite disappointed because they had told this woman all about me and were anxious for us to meet. I hate how isolating CF is. Nonetheless, not going to church gave us a chance to spend even more time together chatting and catching up.

The park was absolutely beautiful and so was the weather. The kids chased the ducks and we all enjoyed walking along the trails. We found a rather odd sign posted though. It was supposed to say "Do not feed the ducks" but...well...you can see for yourself.

Saratoga is known for horse racing, so the park featured a wonderful little carousel. It reminded me of the one from Mary Poppins. The horses had real horse hair tails, and the paint jobs were exquisite. Riding the carousel was only fifty cents per person, and parents of children rode for free. We thought it would be fun to take the kids on it, but Josh flat out refused.

Dave and Jen explained that they had taken him on it before and he hated it. So this time it was Hannah's turn to hate it! Jen and I rode with her, and the poor little thing trembled the whole time. Every time we passed Brad and Dave she cried a little bit. Not really a wail but more of a "help me Daddy!" sort of thing.

To be honest, I wasn't thrilled about the ride myself. It was a small carousel, so it turned in a tight rotation, and the horses moved up and down quite a bit. I was glad it was a short ride!

After the park we met up with Jen's sister and brother-in-law and their little baby, Sammy. They took us to a restaurant called "Friendly's" and it sure was. They explained to us that coming to the East Coast and not eating at a Friendly's would be like coming to California and not eating at an In n Out. It was your basic greasy spoon diner, but the real draw is their ice cream. They call their desserts "Happy Endings." The chicken strips meal I ordered came with a free "happy ending." The ice cream was great, but Brad and I had to admit that the food really did a number on our digestive systems.

The rest of the afternoon/evening we spent with Dave and Jen and the extended family. We all watched some football together, and even prepared dinner together as a group. It was so much fun to be included as if we did that sort of thing every weekend together. They are such a sweet family. I loved playing with Hannah, Josh, and little Sammy. All three kids loved the fuzzy bunny toy and took turns with it. At one point in the afternoon Dave got the "menfolk" to help him winterize the pool and pick up all the apples on the ground that were rotting.

On our last day together we just hung out at Jen's mom's house, which is where we had slept. It was hard to say goodbye, but I'm sure we'll be back again. That's one advantage to not having kids. We're very mobile!

Here are the rest of our pictures from our time in upstate NY.

We returned home last night from our trip to New York. We had a wonderful time! Our adventure began bright and early last Thursday morning. I woke up before Brad did and proceeded to finish up our packing. We packed pretty lightly if I do say so myself. One bag each, plus my purse (the BIG purse!) and the portable oxygen concentrator.

Air Travel

The first leg of our flight was from San Diego to Baltimore. We ended up sitting by a nice gentleman who was reading Lord of the Rings. We couldn't help but comment on it. He didn't seem to mind talking to us a little bit, which helped pass the time on such a long flight. Once we arrived in Baltimore we had a quick lunch and then waited for our flight to Long Island.

Car Rides

Peter and Jeanne, our friends from cysticfibrosis.com, met us at the airport and whisked us away into New York City for a truly impressive night on the town. They graciously treated us to dinner at a phenomenal seafood restaurant. The food was incredible. Peter and Jeanne's son is a restaurant manager in NYC and he had recommended the place and assured us that we'd be treated well there. Treated well is an understatement! We dined like celebrities. When dinner was over, our waiter brought over some champagne and chocolate fondue for dessert, all compliments of Mr. Andrew who regrettably couldn't join us that evening.

With our tummies quite full from the rich food, it was time to call it an evening. On the way to our hotel, Peter and Jeanne gave us a windshield tour of NYC. Points of interest included Times Square and the NBC building. We were given a little bit of a breakdown of the demographics of the area. Apparently our hotel was in Chelsea which meant it was within walking distance of lots of great things. We were also fairly close to Fashion Avenue.

We arrived at our hotel almost completely exhausted. Our first few hours in NYC had been almost an overload, but in a good way. Having had the quick tour of the area, we were better able to plan our activities for the next day.

Boat Trip

We adjusted to the time difference quite easily, which was nice. Our hotel was comfortable and we slept well. We started the day with a delicious breakfast from the hotel lobby. I was very thankful that there were many "home food" options for the meal. With my sensitive tummy I was a little concerned about how I'd do with all the eating out the trip would surely entail.

Our plan for the day was to visit the Statue of Liberty. We took the subway down to the Ferry where we purchased our tickets. We had missed the cutoff for being allowed into the pedestal of the monument, but we didn't mind. The weather was absolutely gorgeous near the water. It reminded us of San Diego weather. A lot of people were crammed onto that ferry, which made me a little queasy, but I quickly regained my composure. As we neared Liberty Island just about everyone on the boat turned and strained to get a good picture of Lady Liberty (myself included.)

The island itself was beautiful and well-kept. We sat for awhile in a nice shady spot and just enjoyed the moment. After we had caught our breath a bit, we proceeded to tour the island and get closer to the statue. It's quite massive! The pedestal is massive as well. It's about the same height as a 10 story building, but it hardly looks like it because it tapers upward so The gradually. We continued our stroll around the monument and stopped for lunch. We only had one option for food and I'm sorry to report it wasn't very tasty. It was all over-priced, over-produced and over-cooked to the point of being quite rubbery. Even the sodas left a bit to be desired. Oh well.

We took turns taking pictures of each other with the statue in the background. We also found some people to take pictures of us together. I hate doing that though because I usually end up disliking the way the stranger frames the subject of the photo. Here are some of the pictures from the rest of our day at the statue.


Walking Around Town

After taking the return ferry back to NYC, we decided it would be a good idea to catch a quick nap before embarking on our next activity. We were fortunate to have a hotel within easy walking distance of the subway. All the stairs were a bit of a challenge for me, but I was able to keep up pretty well.

We napped for a bit then changed into our clothes that we wanted to wear our to dinner and a show. We had tickets for Lion King and meal vouchers (thanks to Broadway.com) for dinner at Planet Hollywood. Planet Hollywood was just a short walk from the theatre. Our meal there was definitely better than what we'd had for lunch. We even had NY style cheesecake for dessert. Yum!
It seemed a bit funny to us that we came all the way to the East Coast to eat dinner at something that was representative of the West Coast, i.e., Hollywood. We spent a few minutes after dinner walking around the restaurant looking at all the display items the restaurant currently held. We saw John Travolta's T-birds jacket from Grease, and the gold suit worn by Mike Meyers in Goldmember. There was also the toy piano keyboard from the Tom Hanks movie, Big, and a lot of stuff from Will Smith's Independence Day, which is one of our favorite movies.

Having completed dinner, we walked the block or so across Times Square to the theatre. The song is true...the lights are bright on Broadway! It was lit up as bright as daytime there. We found our seats easily and settled in for what would prove to be yet another extravagant Disney production. My seat was beside a little boy and girl. At first I thought "oh great..." but they behaved themselves very well. It was cute to eavesdrop on them and hear what their little minds were processing as the show unfolded.

The Broadway version of the Lion King is a bit more, let's say "interpretive" than the cartoon is. It wasn't just people in full-on animal costumes like you'd see at Disneyland. You really had to use your imagination to see past the people and see the animals. I loved that part of it. After the first few minutes or so you start to forget that there are people controlling the puppets.

It's hard to explain how they did it without showing pictures. Picture taking was of course, prohibited. We did manage to sneak one in of ourselves in our seats in the theatre. The show let out at 11:00, and then it was back to the subway and back to our hotel.

For our last day in NYC we wanted to go to FAO Schwartz for some toys for our kids' friends. We settled for the Toys R Us in Times Square instead. I wanted to bring some sort of bunny toy so that they'd remember it's from the friends in California who have a pet bunny. Our first find was a floppy doll sort of bunny. Then Brad found it. A battery operated rabbit that hopped, wiggled its nose and made noise. Hehehehe...yes, we're the people who give noisy toys to children.

Our treasures from the toy store having been acquired, we made our way back to the hotel to collect our luggage and begin the next portion of our trip. A train ride to upstate New York!



Stay tuned for tomorrow's blog about upstate New York and the harrowing journey it took to get there!