by April | May 6, 2014 | Chronic Illness, CVID, Encouragement, Surviving Chronic Illness, Writing
I could let the stresses of life eat me alive–but I don’t anymore. I’ve had to learn to let it go. Everything comes to a halt when I’m ill. Or when I’m editing. I’ve had weeks of both, which eventually came to an end. Huzzah! During this time, I implemented the “don’t put their clean clothes away until they’ve discovered all the clothes that don’t fit” clause. Well, really, that’s just a fancy name for “if you want clean clothes, they’re probably piled on the floor in our bedroom.”
I used to like methods and schedules. I’ve discovered with chronic illness, the schedule looks more like this: I’ll try that if I have the energy and if I’m not sick. I’ve had to become okay with that. Instead of numbered lists, I do an amalgam with check-off boxes. I’ll even add things to the list if that thing interrupted my day. Like yesterday, my daughter called me to the kitchen.
“The fridge doesn’t sound right.”
Indeed. “Whirrr……whirr….sputter…whirr…” Then, nothing. Rut-roh. As we pushed the fridge away from the wall (yes, I unplugged it! We don’t want another “Mom electrocuted herself on the dryer” event do we? … That’s a story for another time…) I thought to myself: Didn’t I just vacuum this thing out? Taking off the panel proved me all sorts of wrong. I’d never seen so much fluff and dust in one spot.
I grabbed a face mask (I’m reporting this mostly to my mother who is reading along with you and would be sure to warn me of the dangers of dust—my #1 allergy) and started cleaning it out. An interrupted hour later, plugged it back in and TADAH! Worked. I immediately wanted to put “Vacuumed under fridge” on my list and check that off. But I was too tired. So I did it mentally.
My son loves his schedule. But when Mom is down with an illness, or editing, or cleaning the fridge, he’s got to adjust, just like the rest of us. It’s harder for him because of his personality. I can only hope this is training him for life, learning to roll with it, learning to stay fluid. Learning to let go.
Letting go is the theme for my life these past several years. Letting go of plans and responsibilities was tough. Letting go of preconceived ideas was harder—letting go of that picture of what life was supposed to be about. However, I think there’s freedom in that. At least I’ve found it to be so. Now my lists are more focused on relying on God for what I can get done, for where He’d like me to focus my limited energies. Some days, I erase far fewer things off that list than I’d hoped to accomplish (most days, frankly), but that’s okay. I might not be moving fast, but I’m moving forward!
by April | Apr 17, 2013 | Chronic Illness, CVID, Encouragement
Last night my son came in the living room and said, “I love Tuesdays because we get to watch something fun and we always have popcorn.” He looked so happy. And that really struck me, because up until about five months ago, Tuesdays were not fun. Tuesdays are the day I do my infusion treatment for my CVID.
I’ve blogged a couple times on how my attitudes have changed since I started treatment for my CVID. I wrote in a previous post how I started thinking of my IgG infusion as immunobuddies rather than an enemy making me feel fatigued, achy and stealing my night and part of the next day away. I also stopped looking at Tuesdays like I wanted to skip them altogether. Instead, I started to think about how I could make this routine into something a bit more enjoyable.
I used to just try and keep my stress low on Tuesday, and make an easy meal before I started my treatment (I won’t share with you the perils of trying to cook whilst carrying around a pump—let’s just say getting your lines caught on a cutting board makes you want to plan ahead!).
But now, not only do I get dinner all prepped and finished before I start my infusion, but I also make popcorn. Popcorn??? Yep. Because I’ve turned Tuesday into ‘low stress, let’s have fun’ night. We’ll turn on a show I love or put in a movie we’ve been waiting to see.
My kids used to say, “Oh, it’s your treatment night,” in an empathetic sad voice. Now, all of us have something to look forward to. My two hours pass and we’ve had a nice evening together. I’m still curled in a ball in the chair after my infusion is over, but at least I’m in pretty good emotional condition now.
And I get popcorn.
What sorts of things do you do help you cope with a rough time? I’d love hearing about it.
May our Lord bless and keep you.
***Novel release update: June is around the corner, and Jasmine will release digitally on the 15th. I’m finishing final edits as you read this, my book trailer is just about ready, and I’m going to have friends popping over here now and then to share about their books. See you next week.***
by April | Dec 31, 2012 | CVID, Encouragement, Expectations, Faith, Thankfulness
As I sit watching tiny flakes of snow drift to the ground outside my window, I find I’m in a contemplative mood. Today is the last day of 2012. And what a year it was. I find I remember many joys, all coming at the end of trials. There were difficult times dealing with fatigue and exhaustion, soreness and illness. But, there were also the clear times when the Lord supplied my need and gave me joy despite my circumstances. If you know me personally, you’ll know my heart is preconditioned to be a pessimist. I don’t mean to be, and I’ve struggled against it, but there it is nonetheless. God made me a trouble-shooter (where you look ahead and see the possible negative outcome of just about everything and do your best to make sure it doesn’t go that way). Which is why I’m rather amazed at my ponderings.
Although there are many unknowns in my life right now, of which I’ve been sorely tempted to worry over—today I’m content. Dare I say hopeful? (GASP!) I can say with confidence that no matter what comes my way, the Lord will provide.
My prayer for you this New Year is that you’ll find yourself looking forward, not back. That you’ll grow in faith with the Lord. That, if you are suffering today, you’ll be able to see past your circumstances to the One who provides true joy despite difficulties sifting down around you.
May your blessings be many, and may He keep you tightly in His mighty grasp.
Happy New Year!
1 Peter 1:3-9 Praise be to the God and Father of our Lord Jesus Christ! In his great mercy he has given us new birth into a living hope through the resurrection of Jesus Christ from the dead, and into an inheritance that can never perish, spoil or fade. This inheritance is kept in heaven for you, who through faith are shielded by God’s power until the coming of the salvation that is ready to be revealed in the last time. In all this you greatly rejoice, though now for a little while you may have had to suffer grief in all kinds of trials. These have come so that the proven genuineness of your faith—of greater worth than gold, which perishes even though refined by fire—may result in praise, glory and honor when Jesus Christ is revealed. Though you have not seen him, you love him; and even though you do not see him now, you believe in him and are filled with an inexpressible and glorious joy, for you are receiving the end result of your faith, the salvation of your souls. (full text here).
by April | Nov 7, 2012 | Chronic Illness, CVID, Encouragement, Faith, PIDD, Prayer
The other day, sick again (seriously!) I was at the doctor’s office seeing a fill-in because I couldn’t get into see my regular physician. As often happens, she didn’t have a clue what CVID was—and she wasn’t really up on primary immunodeficiency. And when I said IgG replacement a tiny light went on—but still, not getting it. (I make time to mention that she’s seen me twice before and hadn’t a clue).
If you don’t know about CVID, then here’s a window: I went from a sore throat at 2:30 to full on bronchitis by 4:00. Colds hit fast, and hard! Considering I had pneumonia in September…well, you get the idea. It really wears down a person.
Anyway, I’m not blogging to come down on a doctor or whine about colds (tempting…but no). I’m sharing a change in attitude.
When I first started weekly subcutaneous IgG replacement therapy, I was hopeful, but scared (it’s a blood product after all, and stuff can go wrong). It involves pumps and syringes and needles—but I was so glad to have help, I did it. Then, at about 10 weeks, I started to have panic attacks—heart racing, sweat-breaking, hand shaing attacks (you get the idea). It got harder and harder to insert the four needle lines and sit there for 2 1/2 hours infusing, afraid to move. After much prayer, and changing some pre-meds, things got easier, and by 25 weeks I realized I needed to start thinking differently about IgG, or the stress would do me in. I started to picture the 90mls of fluid as friends (this came from some very early advice via a friend who’d overcome cancer a couple years ago). I came up with a positive sounding name for my treatment. Oh, and I prayed. A lot.
Guess what? It worked. So super well, that I’ve incorporated it into my thinking, and was brought up short at the doctor’s office, not realizing I’d used the term. When I got done explaining my rare condition, the doctor stared at me blankly. She asked, “What are these ‘immuno-buddies’ you keep referring to?”
I stared back at her and clicked through our conversation in my head. Yep. Instead of saying I was taking immunoglobulin replacement therapy, I’d said, “I guess my immuno-buddies haven’t had this bug yet.”
I went on to explain my thinking and what the term meant to me. She still looked a bit blank, but I wasn’t thinking about that. I was thinking about the turning point in my therapy/care of this disease. It felt like pure victory to me.
I’m not going to say it’s fun, or a breeze now, because it’s not—but I know this is helping me, strengthening me, and God’s answer for keeping me safe for now. Maybe one day they’ll come up with a daily infusion, like they have for diabetes (that’d be so very cool). But, for now, I have my weekly immuno-buddies.
Facing these kinds of challenges can either tax our strength and tear us down, or make us stronger depending on our attitude about it. I’m not saying it’s a quick fix or instant change, but with daily prayer and submission to the Father, we can be more than conquerors in this life.
Romans 8:31, 37-39 What, then, shall we say in response to these things? If God is for us, who can be against us? …No, in all these things we are more than conquerors through him who loved us. For I am convinced that neither death nor life, neither angels nor demons, neither the present nor the future, nor any powers, neither height nor depth, nor anything else in all creation, will be able to separate us from the love of God that is in Christ Jesus our Lord. (full text here)
by April | Sep 5, 2012 | Chronic Illness, CVID, Encouragement, Faith, homeschooling
Comparisons happen in our minds all day long. How much more caffeine is in that 24 oz latte than the 16 oz? Is that spider bigger than the one I saw yesterday, or is that one of its many babies? If I use that super extensive homeschool curricula, will I churn out a gifted student poised to take on the world? (Can you tell we’re getting ready for our first year of homeschooling through high school?).
Comparisons are natural—it’s something our brain does without thinking about it. And that’s where the danger lies. Our eyes. I might see a house that is larger than my own and think about all that extra space I could use and become discontent. Or, see that super in-shape person on TV and be tempted to feel badly about my body. In our subconscious state, comparisons can turn to coveting before we can blink.
When I first entered this flare-up of CVID last year, I had well meaning people say, “It could always be worse.” Or, “You could be as sick as this other person, be grateful you’re not them.” I realized right then, that’s not a good scenario. Because in comparing myself to others, ill or well, rich or poor, gifted or normal, I’m going to be tempted to do one of two things: I’ll either gloat and feel self-righteous, or I’ll wallow and start to feel sorry for myself. Both are sinful.
It’s not an easy thing to do, to walk through this life and keep my eyes on God’s plan and off of what is happening in other people’s lives—to be objective. But, it’s something worth striving for. God’s got a different road for everyone to travel. It does Him a disservice if I’m always wishing I was someone else.
If you’ve been walking (reading) alongside me this past 18 months, you’ll know I’ve been awfully sick. The good news this week is that I’ve been administering immunoglobulin replacement therapy for 6 months now, and I’m about 60% better than I was last year at this time. That is HUGE. I’m so grateful to God for treatment for my illness.
If you’re suffering and are waiting for healing, please know that God hears your prayers—and He’s got a plan for you. It might involve miraculous healing. It might involve being healed through modern medicine (for which I’m very grateful, because I’d be long dead from any number of things by now). But, whatever happens, whatever the path, He’s on it with you. He promises that to His children. Keep your eyes on Him.
Deuteronomy 31:6 Be strong and courageous. Do not be afraid or terrified because of them, for the Lord your God goes with you; he will never leave you nor forsake you.”
Hebrews 13:5 Keep your lives free from the love of money and be content with what you have, because God has said, “Never will I leave you; never will I forsake you.” So we say with confidence, “The Lord is my helper; I will not be afraid. What can mere mortals do to me?”
Would you do me a favor? If you like what I’ve written, please share it with someone else 🙂 And I’d love to hear your comments and thoughts!
by April | May 12, 2012 | Chronic Illness, CVID, Thankfulness
I’m sure there are a lot of blogs about Moms going up this weekend. And I’m no exception. But, I’ve got a bit of different take.
A year and a half ago I became a different kind of mom. I’m now a mom living with chronic illness. Up until then, I was a get-er-done mom. A homeschooling mom. A supportive mom. A writer mom. I kept a fairly clean house, I kept us organized and on track. But then, my CVID (Common Variable Immune Deficiency, or Hypogammaglobulinemia) went full-blown. And I went down. Hard.
I’ve had to change my idea of what a mom is and what a mom does and adjust my expectations. My kids have always been good kids. Thoughtful and considerate. But, things have changed with them during all this, too.
My kids notice when I don’t feel great. They tell me to go sit down. They take tools out of my hand and say, “That’s enough, Mom.” My daughter, in particular, will tell me to go lay down, sit down, stop. One particular day, I must have looked pretty done-in because after my daughter told me to go lay down, she proceeded to cook our dinner, get it all served and get her and her brother ready to go. I woke up to steak, potatoes and a salad. I have to admit, it tasted ten times as good as normal because she made it for me.
My kids are a huge blessing to me. I’ve often apologized for not being able to do more things, for not being able to keep up—but they just tell me, “It’s not your fault you’re sick. We love you.”
SO, this is a blog shout-out to my kids. I know it’s not easy living with a mom who gets worn out unexpectedly, who tells you to take a bath whenever we’ve been out in public (to protect us from germs I can’t fight), who won’t let you go certain places because you might get exposed to things—and most painful, who can’t hug you when you are sick. I know it’s a drag when I can’t run off to the park when it’s pretty out because my energy is already spent by noon. Or play games as often. Or, well, fill in your blank.
I hope you know how much I love and appreciate you both. How blessed I am to have you both in my life. I thank the Lord he gave you to me.
Psalm 173: 3-5 Children are a heritage from the Lord,offspring a reward from him.Like arrows in the hands of a warrior are children born in one’s youth. Blessed is the man (woman) whose quiver is full of them. (full text here)
