A Year in Review

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Look to the Lord and his strength, seek his face always. Remember the wonders he has done.

~I Chronicles 16:11-12a

Happy Holidays a little late! I’m sorry I’ve been absent from my blog for so long. Jaime told me I’d better get something published before people started to worry about me! My writing has gotten pushed to the back burner. It’s not as though life is busier than before, it’s just been different since school started in the fall. Somehow when my routines and responsibilities got rearranged, the blog got pushed out of the mix. I miss writing here, so stick with me. I’ll be back in 2018.

Last night Jaime and I were talking about the highlights and low points of 2017. I like reminiscing about the past year before I venture into the new one. It’s fun to remember and relive the happy times and good to note that we did, in fact, survive our challenges. And there were a few–Jaime had a really tough, busy stretch at work for the first few months. I had a rough summer health-wise and had to have both IV antibiotics as well as oral antibiotics and steroids during what are usually my healthiest months of the year. A bunch of my hair fell out (gotta love side effects). I lost some lung function. I had back problems and spent months in therapy. We had to cancel a trip to Chicago in the early spring because of the Jaime’s work situation and we missed a planned vacation to Tennessee in July due to my illness. I woke up with pink eye on Christmas Day (apparently I was on Santa’s naughty list) and I am on antibiotics now for a virus gone rogue. Those were some of the low points.

Ah, but the highlights! There were many more of those. The tooth fairy made two appearances here and one at Grandma’s which was a fun first for us and Lucas. Lucas played on his first two soccer teams with coach Dad, and so far has not broken anything¬† in spite of all the soccer balls he kicks and scoops and does who-knows-what-else with around the house. Jaime’s mom courageously fought cancer with surgery, chemo, and radiation and was given a clean bill of health. We participated in the Great Strides walk for CF in May and were showered with support. We had several gatherings with Jaime’s family and visits from my family. We traveled to West Michigan for beach time and reunions. Lucas, Jaime, and Grandpa Ventura took a trip to Washington D.C. to see Manchester United play. We went to Wild Kratts live and Detroit City FC games. We hung out with our friends. Lucas did great in Young Fives and he transitioned smoothly into Kindergarten.

I realize at this point I might be overdoing it, but I hope you’ll allow me to share a few more highlights. ūüôā

Lucas helped me brush up on my geography skills and he learned to ride a two-wheeled pedal bike. There were ten new deer signs installed within a few miles of our home which was mega exciting for our resident six-year-old. We did some nice landscaping in our backyard and my garden was extra beautiful. I had a healthy fall and even got through my first virus in November without needing antibiotics.¬† My back issues improved and I was able to start jogging again. I got to go on two field trips with Lucas and his classmates and Jaime went to two in-class parties. We both got to see him read a self-authored book to his class about what he was thankful for, and we both made it onto the book. Lucas got interested in Legos and I’m living vicariously through him as they were not marketed to girls back in my day. (I didn’t know what I was missing.)

We laughed a lot this year and experienced much joy. We cried a bit too, and faced some tough disappointments. But our consensus is that we have a really great life and we’re extremely thankful to God for all the blessings and the challenges and the various facets that make it ours. God has always been faithful to us and we know that will never change.

And so we look forward to whatever 2018 will bring.¬† Jaime and I will both turn 40 which is shocking (and somewhat disturbing). It’s quite a milestone from cystic fibrosis perspective though, so I think we’ll celebrate rather than mourn (any black balloons that show up on my doorstep will be immediately popped). I’m sure there will be more soccer and Legos and more visits from the tooth fairy. There will be good times with family and friends.¬†There will be struggles.¬†I always feel some nervousness as I look out toward the future, wondering what is coming my way. I can’t quite see how certain things in my life are going to work out. But it’s not my job to know. I don’t need to be afraid because God has promised never to leave me, always to help and strengthen me, and He’s promised to finish the work He has begun in me. And so with a nod toward last year’s challenges and a heart brimming with thankfulness for the blessings, we’re stepping forward into a new year.

May your new year be full of blessings, may you know God’s love, and may you take hold of His strength during the tough times.

Happy New Year from our family to yours!

Give thanks to the Lord for he is good, his love endures forever.

~I Chronicles 16:34

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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 ūüėČ