The Glory of Week Three

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Happy New Year a month late! I didn’t intend to let so much time pass between my last post and now, but things got extra busy with the holidays, and after…well, I just felt a little uninspired.  I suppose that sometimes I need a break, even from things that I greatly enjoy. I follow several CF blogs and when someone doesn’t post for weeks on end, I begin to wonder if they are alright. I hope none of you were concerned!

We had a wonderful holiday full of family time, fun, and relaxation. Here’s a few of my favorite photos from Christmas:

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Christmas morning!

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Lucas made Jaime a hat…

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And me a necklace 🙂

The new year started with a bang…in the form of a virus that hit me on January 2. Admittedly, it wasn’t my favorite way to ring in the new year. Unfortunately, Lucas caught my virus and missed a whopping four days of school the second week of the month. This virus made him sicker than he has ever been and seeing that made me very grateful for how well I weathered it.

I wrote in December about my uncommon cold and this virus progressed in the same way, except for one notable difference. My doctor was out of town when I got sick, and the day it became clear that I needed antibiotics was a Sunday. Because of these two factors, I was prescribed antibiotics by an on-call doctor who has never met me. To his credit, he listened carefully to me, allowed me to (respectfully) question his antibiotic choice, and even accepted my personal recommendation for what antibiotics I thought I needed (based on what I guessed my own doctor would have prescribed).  And I must say, I chose well for myself. I started to feel better after just a few doses. The one difference, though, is that this doctor prescribed me three weeks of antibiotics rather than two. I used to always get three weeks, but lately my doctor has been giving me just two weeks of treatment. Two weeks is sufficient to kick the infection, but three weeks is just so wonderful. I simply love week three.

That may sound strange, but week three of antibiotics is the closest thing I get to a vacation from CF. Of course I use that term lightly. I still have to do treatments and therapy every day. I still have to take a handful of pills with each meal. I still have 40% lung function. CF never really takes a break. But by week three of antibiotics, the infection is gone and my chronic levels of bacteria are lower than normal. Because of this, I produce less mucus and cough far less than I usually do, even at my healthiest. My chronic cough is hard on my body in many ways. When it vacates or lessens for a bit, my life becomes easier. Here’s a few things I noticed last week during week three:

Monday: I woke up earlier than usual and still felt rested. I breezed through my treatments in record time because there was so little coughing and so little mucus to clear. Lucas and Jaime hadn’t even left for school and work and I was already through my morning routine! What to do with all my extra time?!

Tuesday: I (almost) made it to my 9:45 am Bible study on time. That. never. happens.

Wednesday: I had so much free time after my speedy treatments that I decided to go for a walk in the morning. And run some errands. I picked up Lucas for school. I decided to run more errands with Lucas. Let’s hear it for energy!

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One errand was to buy a birthday gift for Lucas’s cousin. He can’t wait to give it to her!

Thursday: I had a friend over in the morning. No need to preserve my kid-free time after I knocked out my entire to-do list yesterday! My friend commented on my clean house. That’s right, a clean house at the end of the week!!  I picked Lucas up and after lunch, we decided to put up some new maps we bought for his room. Several hours later all the wall decor in his room was rearranged and re-hung. I had five hours of tutoring that evening, but who needs to rest when it’s week three!

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Lucas is thrilled with his world map and US map (behind). He can start teaching me geography now.

Friday: CF decided to remind me of its presence this morning. In all my productivity yesterday I forgot my digestive enzymes at one meal. I spent the morning feeling sick to my stomach, but I was still able to get out for a brisk walk before I picked up Lucas, because #weekthree.

Saturday: I took my last dose of antibiotics. It felt a bit sad to bid farewell to my security blanket. I knew I would have a few more days of feeling better than usual, and with that in mind, I headed out for a walk. I surprised myself by powering through 2.5 miles in 38 minutes.

Sunday: I decided to do as much as possible to get into good shape before the adjustment phase hits and went out for another walk. I got through three miles in 48 minutes. Not bad!

Monday: Week three was technically over but I still felt great. A former student texted me and asked for an emergency tutoring session before an exam. Tacking on two extra hours of tutoring didn’t seem like a big deal so I agreed. (This just in…she aced her test!)

Tuesday: Week three’s extra energy was still fueling my fire so I decided to write a blog post on top of my Bible study and tutoring today. And here I am 🙂  I’m thankful for week three and for each day of feeling strong and energetic. I’m learning to enjoy these days as a gift rather than focusing on the fact that they won’t last.

Because they won’t. I know that things are going to get more difficult in the next few days. I also know that I’ll get through it and adjust to my normal once again. It will mean longer breathing treatments, earlier nights, later mornings, less productivity, more coughing, and more exhaustion. I’ll have to start over on my running goals and pace myself throughout the day. But it’s still a wonderful life–my own wonderful life. And God always supplies the grace and strength that I need. The glory of week three is behind me but there are blessed and happy days ahead!

The Adjustment Phase

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It’s unseasonably warm and sunny here today, a glorious 66 degrees. I adore the hope of spring with its promise of new life to come, colors warming their way back into the landscape, balmy air to breathe and a plethora of activities beckoning me out of doors.

I’m especially grateful for this weather today as I’ve entered what I like to call the adjustment phase.  A little over a week ago I finished up a three week round of antibiotics, and a few days later wrapped up my 12 day steroid burst. In theory it’s great to be off those medications. In practice, it’s rough being off those medications. For otherwise healthy people, taking antibiotics cures the infection in your body and when you complete your course, the infection is gone and normal life commences. For me, antibiotics suppress the bacteria that has taken up permanent residence in my lungs allowing me to feel much better, but the infection is never 100% eradicated. I remember a lung culture that was taken after my first round of IV antibioitcs last spring. The antibiotics did such a great job that the only thing that grew out was what the report termed a “rare” or small amount of a common bacteria called Staphylococcus (responsible for the well known Staph infection). The big guns did their job.  One month later, although I wasn’t acutely ill, my lung culture showed numerous amounts of staph and psuedomonas, the other bacteria that grows up in my lungs most of the time. Because of my cystic fibrosis, the conditions in my lungs are such that bacteria thrives there and I cannot ever be completely rid of it.

I have noticed as my condition has progessed, that five days to a week after I go off antibiotics, I go into a phase of increased struggle. The bacteria in my lungs are returning to their chronic levels.  My chronic cough returns, my congestion levels rise, and my chest, back, and abdominal muscles become tight and sore since they seized the opportunity to atrophy with decreased use during treatment (who can blame them!). I often have several days where I feel chilled and feverish even though my body temperature remains normal. I think my body initially puts forward a strong immune response as it readjusts to life without the drugs. It is difficult because I go from feeling better than normal while on antibiotics to feeling worse than normal within a few days as my body finds its footing.  The first week following antibiotics and steroids often still includes some of the side effects of the drugs as well such as poor sleep and stomach issues. It’s hard to deal with those side effects without having the benefit of the drugs.

I always know that this adjustment phase is coming, but it is distressing every time. It is hard physically, but it is also hard emotionally. I get to enjoy an easier, more normal life while on antibiotics and steroids, and that is such a blessing.  We had some really great times the last few weeks–sledding and snow play with Lucas, a family day at the zoo, some messy hikes in the woods, and an uncharacteristically clean and organized house. I had a couple of great runs on the treadmill where I felt strong and invigorated. I felt less restraint, more energy, and more freedom. It is hard to come off those highs and get reaquainted with the lows. It’s hard to trade that feeling of freedom for resistance and restriction.

Today as the sun was shining down on me, the light and warmth felt healing. It reminded me of a verse from Malachi.

But for you who fear my name, the Sun of Righteousness will rise with healing in his wings. And you will go free, leaping with joy like calves let out to pasture. Malachi 4:2

The Sun of Righteousness refers to Jesus, and his wings refer to the fringe of his robe. Jewish people had fringes on their robes which identified them as belonging to God, a representation of their identity. I just read the story of the woman who had suffered for 12 years with a chronic bleeding condition who reached out to touch the fringe of Jesus’s robe and was instantly healed. She seemed to understand that because of his identity as the Son of God, He had the power to heal her, and so she touched what represented who He was. Reading stories like that makes me long for healing, and although I cannot physically touch Jesus’s robe, I often reach out to Him and ask Him to heal me.

And Jesus always answers me with a measure of healing, whether physical, emotional, or spiritual. There are days I breathe easier. There are moments where I feel supernatural strength. There are times where my heart is secure and steadfast against all odds. There are moments when fears and worries flee and I am filled with peace, and times when my trust in Him and His perfect plan are renewed. I know that some day I will be healed completely. It may not be until I reach heaven, but the chains of this disease are temporary. Jesus has brought me through valleys, He has allowed me to walk on heights, He has protected and sustained me and allowed me to say, even on the darkest days, and even during this pesky adjustment phase, “it is well with my soul.”

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“But as for you who fear my name, the Sun of Righteousness will rise with healing in his wings. And you will go free, leaping with joy like calves let out to pasture.” Malachi 4:2

An Update and a First

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It’s update time, and boy do I wish I could tell you I was footloose, fancy-free, and feeling fabulous.  (Too much alliteration?) But alas, that has not been my story these past few months.  I told you in my last update post about a month ago that I was on oral antibiotics and steroids after contracting my fourth virus for the winter, and was beginning to feel much better. I did feel great while I was on those treatments and for a week or so once I was off.  I then entered what I thought was an adjustment phase where I didn’t feel as good.  My body had to readjust to fighting the colonized bacteria in my lungs and inflammation without the help of the medications.  I was still running on the treadmill and even got to the point where I could do a combination of jogging and walking for two miles in 28 minutes.  The exercise definitely got harder once the medications were ended but I still thought I had made some sizeable gains as I was tolerating a much higher level of activity.

Imagine my shock when at my follow-up pulmonary appointment last Thursday my breathing test (FEV1) was down an additional three points from where it was when I was sick. I knew I wouldn’t be back to the 49 I was at before virus number one in December, but I thought surely, surely I had made some progress.  I couldn’t believe that it was even lower. My doctor was surprised as well, enough so that he scheduled a repeat test just four days later to make sure it wasn’t a fluke.  I wasn’t showing any signs of an overt infection–my temperature and oxygen saturation were normal, my lung sounded clear, my congestion was unchanged in color, texture, and quantity, my exercise tolerance was up, and my weight was up.

Over the weekend I did notice the advent of some increased cystic fibrosis symptoms–more coughing, more wheezing, more windedness, more tiredness, but I still thought for sure the test was wrong.  On Monday I had my retest and the FEV1 dropped another point, for a total loss of 17 points. Sometimes you just can’t win.

After a frustrating winter, this latest development was incredibly demoralizing. I have worked hard exercising and eating right and trying to take good care of myself, but those FEV1 numbers just don’t want to budge. My doctor was very concerned as well. We simply cannot leave a number in the low 30s alone, so it is time to get a bit more aggressive.  I had a chest x-ray which didn’t show anything unexpected, and will have a CT scan early next week.  I’m back on steroids, just a low dose this time, and for the first time, I started IV antibiotics.

I know, the other CFers out there are probably scratching their heads.  I’m aware that most people with cystic fibrosis have their first round of IV antibiotics well before age 36, but that hasn’t been my experience.  Because I didn’t struggle much with my lungs until my late 20s, I have not required frequent antibiotic usage and oral antibiotics have always been very effective. However this time, the oral antibiotics didn’t make a lasting difference, so my doctor felt that using IVs, which are more potent, was a must as we aim to get my lung function back to baseline. Although it’s disappointing to have this first, I’m very grateful for a stronger treatment option and feel blessed to have made it thus far without needing them.

Yesterday I got a picc line placed.  Picc stands for “peripherally inserted central catheter” and is a thin, flexible line that runs through a vein in my arm towards my heart. It allows me to do my IV antibiotics at home. Last evening the visiting nurse came to teach me how to administer the drugs and I will be infusing them for the next two weeks.  It will be a bit rigorous as the medications need to be infused on a strict schedule, and I will have four infusions a day.  One set of infusions is back to back which will mean an hour and a half of being attached to a pole. This schedule will mean also missed hours of sleep.  But I hope and pray that this will get me back on the upswing.

Lucas checking out my picc line.

Lucas checking out my picc line.

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First he “fixed” the tubing (with his flashlight)…

...then my line!

…then my line!

I was a bit concerned how these treatments would affect Lucas. He is a pretty sensitive little guy.  So far it is going well.  He seems to think the line is some type of accessory (it is purple after all!) and he told me he likes it. He has asked me many times today if I’m okay and if the sick is gone, and has been showering me with hugs and kisses and love, so I know he’s aware. There have been a few signs of stress but overall he’s doing great.  And I’m not gonna lie, the extra love and affection has really helped me get through this day.

Yesterday as I was getting my line placed, the nurse asked me if I’d like to listen to any music on Pandora.  I asked for some soothing classical music.  Just as they were about to make the incision and place the line, a piano rendition of the hymn Great is Thy Faithfulness started playing on the radio. The title of my blog, Bright Hope, comes from verse four of this hymn (written by Thomas Chrisholm in 1923):

Pardon for sin and a peace that endureth,
Thine own dear presence to cheer and to guide;
Strength for today and bright hope for tomorrow,
Blessings all mine, with ten thousand beside!

This perfectly timed reminder from God of His faithfulness was just what I needed. I have been struggling to remain hopeful as this current fight has seemed long and hard. I feel at times that I am pushing against an impenetrable, immovable force. The feeling of defeat is poignant when those FEV1 numbers drop and drop without any clear explanation, and none of my efforts seem to matter.

But I have experienced God’s faithfulness over and over in my life. I know this current struggle will be no exception. He does give me strength, and hope.  His mercies are new every morning. I don’t know exactly how this will all turn out, but I’m hoping and praying for complete healing.

My sweet little lover boy. (Yes, my IV is hanging from a lamp...but that's a story for another day).

My sweet little lover boy keeping me company during my infusion.

In the meantime, you can be sure I won’t give up. The “blessings all mine” are so worth fighting for.

Great is Thy faithfulness! Great is Thy faithfulness!
Morning by morning new mercies I see;
All I have needed Thy hand hath provided—
Great is Thy faithfulness, Lord, unto me!

The Wrong Way to Go Viral

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Dr. Lucas is in the house!

Dr. Lucas is in the house!

Less than a week after I wrote that post about all the things I do to stay healthy (you can read it here) I got leveled by a virus.  It was as if I tempted fate with all my ideas of how I was going to avoid the germs this year. Actually, the whole family got sick.  It started with Lucas, spread to me, and finally knocked Jaime down as well.

I don’t think we’ve ever all gotten sick at the same time before.  It has been interesting to see how this virus unfolded in each of us–different ages, different bodies, different weaknesses.  Any guesses as to who is still struggling?!

Lucas brought the virus home to us but got through it the most easily.  He woke up with a little cough one morning and moved more slowly throughout the day (one notch down from break-neck speed).  The next morning he seemed all better but that afternoon he fell asleep in the car, asked to lay in bed and snuggle and then laid on the couch and watched TV.  None of the above ever happens, so we knew something was up.  His temperature was elevated at 99.4 and he was flushed. He was acting normal already the next day but struggled through the next few nights with a cough.  He’s all better now.

Jaime’s illnesses started with a tickle in his throat and a dry cough.  He had a few days of coughing and a sore throat.  He had body aches and exhaustion.  Unlike Lucas who was through the whole thing in three or four days, it hung on for five or six days for Jaime.  It was complicated by the fact that he was trying to take care of Lucas, and me, while being sick.  He was such a trooper.  Thankfully, he’s all better now.

I started out with having all viral-like symptoms, runny nose, watery eyes, sore throat, low fever, chills, nagging cough, body aches.  These symptoms lasted about four days but my lungs stayed mostly clear.  On the fifth day I started to feel distress in my lungs.  I had extra congestion, incredible tightness, and wheezing.  On the sixth day my doctor started me on oral antibiotics as the virus had caused an exacerbation.  This is where something causes the symptoms of my disease to worsen and the bacteria which has colonized in my lungs to flare up.  My worse day was day seven where walking up a flight of stairs left me competely winded and gasping for air.  (Just one week earlier I had run two miles on the treadmill in 25 minutes.  Talk about the rug being pulled out from under me!) Days seven through nine were filled with lots of coughing attacks, lots of stomach issues (thank you antibiotics!) and lots of prayers for strength.

It’s hard to be sick and keep a three year old happy at the same time.  And even Lucas started commenting on the state of the house (“Our house is so, so messy!!” Thanks for pointing that out). Today is day ten and I’m finally feeling a bit more human.  I still have a ways to go, but I think I’ve turned a corner. I’m ready to start working on regaining strength and weight (I lost four pounds this past week).

The thing of it is, from a CF perspective, (and barring something yet unforeseen), this ten day struggle of mine has been fairly mild.  Plenty of CFers who get a virus which causes an exacerbation end up requiring steroids, or IV antibiotics, or need to be hospitalized.  So even though I have not enjoyed the past ten days and pray for another long streak of health once this is over, I am grateful that I’m getting through this illness as well as I am.

It’s been a very hard week for Lucas because he is not accustomed to me being sick and out of commission.  I am thankful for that too; I’ve been so healthy this year that he’s not used to it.  He doesn’t understand why I won’t chase him around the house or why I won’t take him places or why I keep sitting down or laying on the couch.  Earlier today he asked me for some chips.  I went to get them but got sidelined by a coughing fit.  A few minutes passed and I heard Lucas call down to Jaime, “Daddy, Mommy’s coughing.  Will you get me some chips?”

Here are some pictures of what has been going on at casa de los Ventura this past week:

My sweet little sick boy.

My sweet little sick boy.

Never fear, 24 hours later he was feeling well enough to fly around the house as a super hero!  (Yes that's a kitchen towel).

Never fear, 24 hours later he was feeling well enough to fly around the house as a super hero! (Yes that’s a kitchen towel).

Feeling sad that Mommy's can't run around the table.

Feeling sad that Mommy can’t chase him.

Hiding: the silent protest.

Hiding: the silent protest.

Did I mention it's hard to be sick with a toddler on your back?

Did I mention it’s hard to be sick (and do extra breathing treatments) with a toddler on your back?

The past few mornings when Lucas has come to wake me up he has asked, “Mommy, are you all better now?” I’m looking forward to telling him, “Yes, all better!” hopefully very soon.

[Not] The Most Wonderful Time of the Year

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FInding the perfect Christmas tree to take home!

Don’t get me wrong, I love the holidays (Lucas’s contagious delight, crackling fires, Christmas carols, glowing candles, fond memories of popcorn balls and felt stockings), but this time of year is rife with germs, colds, flu, and all things scary for those of us with cystic fibrosis.  During cold and flu season last year I required antibiotics only once (in February) after a seven month antibiotic-free streak. It has now been ten months since I’ve been on antibiotics and I’m hoping to continue adding to that number, even through these winter months. I made some changes to my health routine last winter that seemed to have a big impact.  Here are some tips to help you get through cold and flu season unscathed!

1. Get plenty of rest and sleep.  Sleep is by far the most important factor in my health maintenance routine. I do best if I have nine hours a night. I can get by on eight, but any less than that for an extended period of time means trouble. It’s easy around the holidays to lose out on sleep, whether you’re shopping, going to parties, or getting ready to host family.  Even though it’s a busy time, try to make sleep a priority. Your body will thank you.

2. Eat a healthy diet. God has given us many wonderful foods in nature that can help protect our bodies against infection and can fight off illnesses if we’ve fallen victim to a virus or bacteria.  In general, eating a healthy diet with lots of fresh fruits and vegetables and cutting down on processed and sugary foods which cause inflammation will help you stay healthy this winter.  Here are my favorite infection fighting super foods that I eat during the winter:

  • Homemade Chicken Soup: Chicken soup really is healthy.  It clears up congestion and reduces inflammation. Chicken contains an amino acid called cysteine which is released when you make soup. Cysteine thins the mucus in the lungs which helps the body to heal from a virus or infection and helps us CFers fight our daily fight against congestion.  Thanks to some advice from a friend, I have recently started making my own chicken broth with the bones and leftover parts of a whole chicken.  I fill a large soup pot and simmer the bones, skin, and whatever meat is leftover for about 12 hours.  At that point, I add some onion, carrots, celery, a few bay leaves, a tablespoon of peppercorns, and a little salt and let it simmer for another 12 hours.  I then strain out all the solids and freeze what we won’t be using immediately.  We have been adding this broth to many soups, stews, and other dishes that call for chicken stock.  It tastes great and is very nutritious!
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Homemade Chicken Broth

  • Cranberries: Cranberries are in season right now and are a super healthy fruit.   They are extremely high in antioxidants, second only to the blueberry.  They are very low in sugar.  I eat them raw for maximum nutritional value (yes, raw).  Because they are very sour, I drizzle them with honey.  They are still tart but once you get used to them, I think you will like them! Cranberries can be frozen right in their bags.  I buy and freeze enough to get me through the winter months.
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Beautiful berries!

  • Cruciferous Vegetables:  Cruciferous vegetables include vegetables such as cauliflower, cabbage, brussel sprouts, broccoli, and kale.  This family of vegetables is very high in calcium, various vitamins, disease fighting antioxidants, and other phytochemicals.  (Phytochemicals are plant chemicals that have protective or disease preventative properties.  Antioxidants are phytochemicals).  My two favorite veggies from this family are kale, which has also been shown to ease lung congestion, and red cabbage which is anti-microbial and anti-bacterial.  Red cabbage is effective against both staph and psuedomonas (common CF bacterias).
  • Ginger: Ginger is soothing to the stomach.  It is also rich in antioxidants and has potent anti-inflammatory properties.  Using fresh ginger will give you the most benefit. I grate it to make tea and use it in stir fry.  I also eat candied ginger. This does have added sugar so I just eat a few pieces each day.  I warn you, it can be very hot, but I like it!
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Spicy and delicious

  • Garlic: Garlic stimulates the immune system.  Garlic has a phytochemical called allicin which is powerfully anti-bacterial and anti-viral.  It is effective against psuedomonas.  In spite of my anti-garlic upbringing, I now cook with fresh garlic on a regular basis (sorry Dad!).  I also take a garlic supplement during cold and flu season.
  • Turmeric Root: Turmeric root is another immune-boosting root that is rich in antioxidants and has potent anti-inflammatory properties.  I often grate turmeric into my scrambled eggs, put it in soups, or make tea from it.  You might want to try my friend Erin’s recipe for turmeric, black pepper, and honey or maple syrup tea (click here for the recipe.)  It’s very soothing!  (Side note, black pepper is also anti-inflammatory, anti-bacterial, and reduces congestion).

3.  Drink plenty of fluids.  Stay well hydrated!  If we got sick when we were little, my mom would set the timer and we would have a drink every half hour.  That may seem like overkill but fluids are so important.  Water flushes waste and bacteria out of our systems and staying hydrated will give your body the energy to fight off infections.  I have found that my mucus seems thinner if I’m drinking enough water too.  I try to drink eight glasses of water per day in addition to my other fluids (coffee♥, orange juice, and coconut milk).

4. Wash your hands often.  This is kind of a no-brainer but it’s important to get those germs off your hands, especially if you’ve been out and about. I also keep my fingernails cut short because bacteria loves to hide under the nails.  I try to avoid touching my face, too, so that the bacteria that is inevitably on my hands doesn’t get into my eyes, nose, or mouth.

5.  Get some fresh air and exercise.  Exercise helps your immune system to fight against infections and strengthens your whole body.  Getting outside gives you needed exposure to natural sunlight and boosts the spirits.  Even if the cold air is hard to breathe, staying out for a few minutes will be beneficial.

Lucas sees to it that I get plenty of fresh air and exercise.

Lucas sees to it that I get plenty of fresh air and exercise.

6.  Laugh!  Staying joyful and upbeat lowers stress and helps to keep infection at bay.  It’s easy to get nervous during cold and flu season.  After all, a simple cold is rarely simple for those of us with chronic lung disease.  But try to push those fears away.  Do the very best you can to take care of yourself.  Then relax, smile, and enjoy this wonderful time of year!

Laughter really is good medicine.

Laughter really is good medicine!

Stability

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I had my three month checkup at the CF clinic last week and am happy to report that things went well!  My doctor was pleased with my weight gain and happy that I have been able to work up to running two miles. My lungs sounded clear, the oxygen saturation in my blood was normal at 98%, the bacteria in my lungs are susceptible to a variety of oral antibiotics (meaning there are several options for treatment if I get sick), my blood sugar was normal (no CF-related diabetes!) and my FEV1 was up two points to 49% of predicted. I’ve worked hard not to get too caught up in the FEV1 score because it can be a fickle fiend.  But, honestly, I was thrilled to see it go up.  It felt like a pat on the back after several months of working hard on my weight and exercise goals.

Lucas and Jaime both accompanied me to the doctor. Lucas has traditionally been very shy and quiet during my appointments but he was neither of those this visit. He kept loudly proclaiming his desire to stand on the white paper on the exam table.  He said over and over, “The doctor look in MY mouth now.  The doctor look in MY ears!”  I have to hand it to his pediatrician.  She is wonderful, apparently so wonderful that Lucas wants to be examined.  Thankfully the doctor seemed charmed. But I might have to find a babysitter for him next time I go.

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Look at that face…he knows he’s a little rascal!

Overall my doctor said that my health is very stable. Stability is a wonderful thing when you have a progressive disease.  Of course I would love to see a big improvement.  I would love to see my FEV1 jump 10 points.  Occasionally CFers see jumps like that, but that’s usually if there has been a dip due to a serious infection. Big gains can also happen if someone has not been taking good care of themselves and they begin to make healthier choices, like being faithful with breathing treatments, airway clearance, and exercise. Some patients have seen significant improvements in lung function by taking a medication called Kalydeco which treats CF at the cellular level.  However, it is only effective for those who have a gating mutation, and neither of my CF mutations are, making this drug ineffective for me.

Thankfully I haven’t been acutely ill for a long time.  My last round of oral antibiotics was seven months ago.  I am not perfect with my treatments but I do make them a priority.  I’m active with Lucas and exercising three days a week.  I eat healthy foods to boost my immune system and to combat inflammation and infection.  I try hard to get enough sleep.  I’m hanging out around 50% lung function with those healthy habits already in place. Without a miracle or a medical breakthrough, I’m unlikely to see a big jump, but I’m stable.  I’ve adjusted to life at this level with these challenges.

Stability means that if new treatments become available, I will hopefully be in a position to benefit from them.  There is so much research going on right now involving treatments and medications that combat the basic defect of CF.  My doctor is optimistic about what might become available in the next ten years.  I hope and pray that there will be a breakthrough in my lifetime.

For now, it’s about keeping on!  I’m thankful for a good doctor’s report and for those two points on my FEV1.  I’m thankful for stability in my health.  I’m thankful that God gives me the strength to live and thrive in spite of my challenges.  I’m thankful for a rascally three year old to make me laugh through my appointment.  And I’m thankful for the bright hope that fills my heart.

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CF = Coffee Fanatic

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Disclaimer: No child *actually* drank coffee during the writing of this blog post.

Hmmm, coffee.  I love it.  I have always enjoyed coffee, but ever since Lucas reached the perpetual motion stage, I have been drinking it religiously.  I need something to help me keep up with that kid.  Jaime recently accused me (on Facebook!) of being a coffee addict.  It had something to do with this headache I couldn’t get rid of until I had a cup.  I would prefer to categorize myself at a coffee enthusiast.  Maybe even a coffee fanatic.  But surely not a coffee addict…

Although I love hot coffee, I don’t need any extra heat in my life during the summer.  So lately I’ve been making a frappuccino type of coffee drink that I created with three simple ingredients: coffee, coconut milk, and raw honey. It’s very tasty, refreshing, and good for you.

Don’t put a dried flower in your coffee drink; I just thought it made the picture pretty.

Coffee has some specific cystic fibrosis related health benefits.  It is extremely high in antioxidants which boost the immune system.  The caffeine in coffee is a natural bronchodilator (a substance that helps open up the airways and increase airflow in the lungs).  Coffee may also protect against diabetes which is a common complication for CFers, especially for those of us over 30.  Although there haven’t been any recent studies, I am pretty sure consuming coffee reduces the number of Mommy Tantrums (and helps moms deal with toddler tantrums).

Honey is a healthy alternative to sugar.  It has vitamins and minerals and is high in antioxidants.  Regular sugar causes inflammation but honey fights against it.  It is antibacterial and has shown to be effective against both staph and pseudomonas which are common CF colonizers.  Many people claim that regular consumption of local raw honey helps immunize against seasonal allergies.  Honey is also very soothing to the throat which is nice for those of us who cough a lot.

The finished product.

The finished product.

To make this drink, simply combine eight ounces of freshly brewed coffee (cooled to room temperature) with four ounces of coconut milk.  Then stir in about a tablespoon of honey.  It will take a bit of stirring before the honey dissolves.  If that bothers you and you don’t mind extra dishes, you can make it in a blender.  When you’re done, pour it into a pretty glass; it tastes even better that way.  For best results, enjoy first thing in the morning.  And after lunch.  And maybe once more before dinner…