Hair, Hair Everywhere

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Sometimes chronic conditions such as cystic fibrosis come with secondary issues. They can be directly related to the disease itself such as Cystic Fibrosis Related Diabetes. There can be damage to organs, bones, or veins due to ramifications of the disease, extended medication use, and the poking and prodding that becomes necessary to treat the condition.  Or there can be temporary secondary issues caused by drug side effects.

If you’ve been following along, you know that I was put on an anti-fungal drug to treat aspergillus (a mold growing in my lungs) as an effort to raise my lung function after a series of serious illnesses last winter and spring. I was warned that the drug came with a lengthy list of nasty side effects.  A few of them were instantaneous–vision changes, photosensitivity, hallucinogenic dreams. They were not fun, but they stopped as soon as I was off the drug. Recently my hair starting falling out, not en masse, but at a much, much higher rate than normal. This problem has persisted even though I’ve been off the medication for over a month. I talked to my doctor, and sure enough, hair loss is on that lengthy list. No one can tell me with confidence when this will stop. I have valid concerns about how much hair will actually be left on my head if it keeps exiting at this rate!

All this hair loss has made for an interesting several weeks at our house. When it first started falling out, I was constantly slapping the back of my arms, sure there were spiders or mosquitos eating me alive. This garnered a few interesting looks from Lucas who was wondering what on earth I was doing to myself.

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Sometimes when the light hits the carpet just right I’ll see a hairball…or two…or ten.  I find hairballs stuck to our clothes. I’ve been pulling hair out of Lucas’s play doh. I’ve been picking it out of our food. The other day at lunch, Lucas and I were playing the raise-your-hand-if-you-like-to-eat game. After a few normal items such as apples, tomatoes, cucumbers, he said, “Raise your hand if you like to eat hair!” Poor kid, he’s been eating a lot of hair lately. Neither of us raised our hand.

The hairballs on the carpet and in the laundry are bad, but they don’t hold a candle to my bathroom.  I’m constantly picking hair out of the shower, out of the sink, off the floor, and out of my brush. I looked in my trash can the other day and did a double take. It looks like a family of furry little rodents have taken up residence in there!

I’ve been told the hair loss is not that noticeable. It looks and feels very different to me, and based on the current circumference of my ponytail, I’d estimate I’ve lost at least a third and maybe as much as half of my hair. But I’m glad it’s not obvious to the rest of the world. I thought about getting my hair cut shorter in an attempt to make it look fuller, and give the new baby hairs (which I hope are already sprouting), a chance to catch up. But I have a little boy who loves my long hair. He comments on whether it’s down, or in a ponytail, or in a braid. He positions my pony tails and braids so they wrap around my neck. He might be heartbroken if I cut it. My big boy might be too.

I’m not enjoying this and I certainly have had my moments of eye rolling and exasperated sighs. I don’t know anyone, male or female, who feels good about losing their hair. It’s one of the hard things about a chronic disease–all these additional annoyances. But I’ve learned that in instances like this, it’s important to keep perspective. After all, this is not a weighty issue such as lung function and has no bearing on my survival. I can live just as well without the hair, and the hair loss should be temporary. People lose their hair for many reasons, and I’m thankful that this is not a result something much worse, like cancer.

It isn’t always easy to keep a positive attitude. These types of issues, minor though they are in the grand scheme of things, feel like insult added to injury. The sum of many of these little insults can seem unfair and can accumulate into a real burden if I focus on them. It’s easy for negative thoughts and attitudes to creep in…but it is precisely that which steals joy from my life. I cannot waste my energy worrying about the little things because I need that energy for dealing with the serious problems that come my way. Part of living victoriously in a battle with chronic illness is to push through the negative and focus on all the good, all the blessing, all that’s going right in my life–to have a joyful heart in spite of the aggravations that come along with this disease.

Even in this circumstance, I have many things to be thankful for. I’m grateful for strong medications that treat my disease and extend my life, even when they have negative side effects. I’m thankful for my four-year-old who thinks it’s hilarious when I dance around trying to get imaginary spiders off my arms. He makes it a lot easier to choose a joyful attitude. I’m thankful for husband who will never stop loving me no matter how much hair is on my head.

What I’m most thankful for, is that I’m loved and cared for by my Heavenly Father. Matthew 10:30 says that God knows me so intimately, He even knows the exact number of hairs on my head. Knowing I am loved by God, that He understands every hurt and frustration, that He will never leave me and is using my light and momentary troubles to achieve eternal glory, that is where the true joy and peace comes from.

Hair, hair, everywhere…I don’t really need you, so I’m trying not to care 😉

CF Suitcase

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It’s been a while since I’ve been by!  First an update. Things are going well! I’ve been feeling great and have kept up with my running. I’m still running two miles three times per week and am slowly trying to reduce my time.  My current best is 26 minutes 33 seconds which I got on the treadmill this week.  I was able to run outside several times due to cooler temps which was great!  Here were my last three outdoor runs:

  
I was intruiged that my time got better by 11 seconds each time. I’m hoping to get my time down to 25 minutes for the two miles. It’s going to take a few weeks but I think I can do it. 

I wear my breathe bracelet every time I run. It reminds me of all those loving people in my corner who give me support, encouragement, and help. It reminds me of Jaime and Lucas and the rest of my family who need me to be as healthy as I can be. It gives me a feeling of solidarity with all those CFers who work hard and struggle to stay healthy. It is motivation to push through the tough moments.

Summer has been great! Lucas is enjoying preschool and I like working during the day rather than in the evenings. Jaime has a break from soccer coaching for the next few months as well so we have more family time than usual.

We are heading out for vacation soon and today I got busy packing. I don’t know anyone that loves packing. Unpacking is even worse! For a CFer, it’s practically impossible to pack light. Since cystic fibrosis doesn’t take a vacation, there are lots of things I need. Take a look at the “extras” that I have to bring along to manage my disease:

  
I have my air compressor and nebulizer kits for breathing treatments, two inhaled medications, my anti-fungal drug, child-strength super sunscreen to combat the photosensitivity caused by the anti-fungal drug, a medication to reduce inflammation, two CF-specific vitamin supplements, digestive enzymes, a cooler for the medications that need refrigeration, two inhalers, an airway clearance device, and supplies for sinus rinses.

The orange and green bands are for my posture exercises. The body’s natural inclination is to roll the shoulders forward to combat shortness of breath, and these exercises are an attempt to keep proper posture in spite of my breathing issues. The jar is full of water kefir (a probiotic drink) which helps me manage the stomach issues associated with CF. (My friend Joyce taught me how to make it and gave me a starter. Click here to see her recipe for water kefir if you’re interested!) I drink a little with each meal and it helps my digestion.

You may notice that I included workout gear and shoes with my “extras.” That’s because as much as I might want a break, I can’t afford to take a week off from exercising if I want to keep my lungs clear. Thankfully the resort where we’re staying has a very nice workout facility and therefore I have no excuses!

CF requires its own suitcase. But I’m grateful that my gear is portable so I can enjoy some time away with my family. I’m all packed…now to survive the nine hour drive with a three and a half year old.  Thank goodness for iPads and orange tiger headphones!