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 | Nov 19, 2012 | Chronic Illness, Encouragement, Faith, Jesus, Thankfulness
Here in the US it’s Thanksgiving week. It’s a time when a lot of people sit down and consider their lives and give thanks for what they have. I’ve struggled with this a lot since the diagnosis of my illness. It’s hard for me to thank the Lord for things that other people don’t have. Well-meaning people were telling me to be thankful I wasn’t sicker. But, when I joined support groups for my disease, there were plenty of people who were more ill than me. Did I feel I was more blessed than them?
People thank God for their houses and cars and their health. They thank Him for their secure job, their wonderful marriages, and their perfect kids. I mean, we’re told to count our blessings. But, what if what we think of as blessings aren’t limited to these things?
There are millions and billions of people who don’t have a laundry list of what the world would consider to be good things in their lives. They were just diagnosed with a scary disease, their spouses have betrayed them; they might be losing their homes, their jobs, their kids. Does this mean God doesn’t love them as much as the guy in the big house in the fancy neighborhood next to you?
Very simply: no. God’s Word says He loves His children and cares for them.
So, what if blessings aren’t all about these things; what if the Father’s ‘good’ is something different? His ultimate goal for us isn’t that we live in cushy houses and have everything we think we want. Rather, it’s having a personal, real, intimate relationship with Him.
Don’t get me wrong—it’s not bad to thank God for all the good things in your life—our hearts are to be grateful. But, we’re told to be thankful in ALL things. Thankful for suffering? Yes. Thankful for heartache? That, too.
Think of this: if we’re only thankful for the things we like, then when we hit on hard times (and there will be plenty) then we’re going to be tempted to think that God is displeased with us. That maybe He doesn’t love us as His word promises. That maybe He even hates us.
I can stand here today and say I’m thankful for my illness. I mean it. It’s not easy to say—but it’s true. I’ve seen a lot of blessings come out of this. I’ve met some amazing, encouraging people. I’ve been astounded by their faith in the Lord. Most importantly, I’ve become more assured than ever in the reality of the Father and His hand in my life.
So, as the song says, when we count our many blessings—maybe you should be thinking about the friends you’ve made during your trials; about your ability to come alongside others in their sufferings; and ultimately about the closeness you feel to the Father when He carries you through another day.
1 Thessalonians 5:16-18 Rejoice always, pray continually, give thanks in all circumstances; for this is God’s will for you in Christ Jesus. (full text here)
John 3:16-21 For God so loved the world that he gave his one and only Son, that whoever believes in him shall not perish but have eternal life. For God did not send his Son into the world to condemn the world, but to save the world through him. Whoever believes in him is not condemned, but whoever does not believe stands condemned already because they have not believed in the name of God’s one and only Son. This is the verdict: Light has come into the world, but people loved darkness instead of light because their deeds were evil. Everyone who does evil hates the light, and will not come into the light for fear that their deeds will be exposed. But whoever lives by the truth comes into the light, so that it may be seen plainly that what they have done has been done in the sight of God. (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 | Jul 12, 2012 | Chronic Illness, Encouragement, Faith
Have you ever noticed how much people like to give advice? The other day my son had the hiccups—all day. We had tons of errands, and every time someone heard him hiccup, they’d offer him a sure-fire way to get rid of them. Wouldn’t you know it, every bit of advice was different from the next. These sage words came from a receptionist, a nurse, a doctor, the grocery store clerk, his sister and myself.
Hold your breath. Stand on your head. Drink a glass of water from the other side (okay…what? All that gets you is a wet front!). Hold your nose. Rub your tummy. Take long, controlled, deep breaths. Oh, this one is from my sister and passed on by me—eat a spoonful of sugar (he chose not to, sorry Chelli). He was assured each of these was a proven cure.
Guess what? I know. Yours works and I should have called you first. Sorry. Anyway, none of these worked! They naturally went away some time in the night, and he awoke to a hiccup free day.
Have you ever been given erroneous advice? When I was first so ill, I was given a truckload of advice by the well-meaning and by the meddling (don’t worry, you weren’t the meddling type, I don’t even see them anymore). Most people want to help. And most people have things that really have helped them, and they’re sure it’s going to help you, too. I get that. I’m a researcher, I tried everything I could think of on my own, and a bunch of other stuff that didn’t help a bit. But sometimes…you have to wait.
I waited a long time for the right treatment to come along and make me feel better (42 years). It wasn’t a quick fix, and it’s not sure-fire, but it’s working for me. It’s not a fun thing to infuse immunoglobulin subcutaneously (or for my IvIG friends, intravenously). I’m happy to say, that after 25 weeks of treatment, I’m finally starting to feel better. It’s an amazing thing, feeling good. If you already feel good, then revel in it, roll in it and keep it close. I’ve talked about my little windows of feeling better. The last week or so I’ve had several consecutive hours of feeling better. Not an entire day of it, but huge happy chunks. Enough to know I’m improving.
Waiting is hard. We’re a proactive people. We like action and immediate solutions. Easy answers are best. Patience is NOT a virtue associated with our lives. But a lot of the time, we just have to hang in there, hold on and pray. And pray some more.
Have you ever been given erroneous advice? Did you take it? What happened?
Psalm 27:14 Wait for the Lord; be strong and take heart and wait for the Lord. (Full text here.)
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)
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.
