by April | Jan 28, 2012 | Chronic Illness, CVID, Encouragement, Faith, Immune Deficiency
So, last week I posted about my nervousness in starting subcutaneous treatment for my CVID. Well, on Tuesday, I took the plunge (no pun intended!). I also had a lovely visit with an excellent nurse who trained me. She explained each step, and we got me numbed up for the injection sites. Before I knew it, we were hooking me up to the pump (this involves four subcutaneous needles and tubing being attached from my abdomen to the pump). Then she took my vital signs. My blood pressure is usually excellent, but on Tuesday, it was higher than normal. So was my pulse rate.
As I sat, she chatted with me and the infusion started. Every fifteen minutes the nurse took my vital signs to make sure I wasn’t having a reaction to the infusion. I watched each time she jotted the numbers down. As I relaxed and realized everything was going okay, my blood pressure and pulse dropped. Before I knew it, 2 1/2 hours had gone by and I was done. The nurse gave me a grin as she wrote down the last vital check—all at very normal levels. “You’re not nervous anymore, right?”
She’s was right. Sometimes facing that unknown can be worse than the actual event. And I have a pretty good imagination (thus the writer in me). Unfortunately, I’m also a bit of a pessimist—so I tend to expect the worst and am usually pleased with a better outcome. I didn’t have a reaction (so we put away the Epi-pen until next time), and I didn’t get a headache or nausea. I did get some pretty awesome swelling though, that has finally gone down today (Friday). I understand that gets some better over time as my body will adjust to the treatment.
Something else happened today that I did not expect. For about a half-hour, I felt a bit different. By the time I caught on to what it was, the moment passed. It was what can only be described as feeling well. There was an open window of healthiness, the sun streaming in, a lightness for a period of time in which I didn’t feel the groggy, achy flu-like fatigue I’ve had for so long. I don’t know how else to describe it. Then, before I realized it for what it was, that window crashed closed, and I fell to tears.
People who are chronically ill set a new level on themselves (at least this is my experience and the experience of my friends). This is what feels okay, this is what doesn’t (what passes for okay for someone chronically ill would feel quite sick by a healthy person’s body). I’ve spent so much of this past year feeling lousy, I think I’ve forgotten what it feels like not to feel icky. In fact, as happens often with CVID, I’ve felt worse and worse, less and less able to keep up with life for the past ten years. Tired from doing easy tasks, overwhelmed by decisions, catching every cold that comes by. Some friends chalked it up to age—but it’s not just that. Today, I had a window of proof.
I’m going to try, while I fight a sinus headache off tonight, to hold onto that vision, that view of wellness. Because of that window I glimpsed through today, praise God, I’m hoping for more—when frankly I was afraid to hope at all.
Ephesians 3: 20 Now to him who is able to do immeasurably more than all we ask or imagine, according to his power that is at work within us, to him be glory in the church and in Christ Jesus throughout all generations, for ever and ever! Amen. (read in context here)
by April | Nov 20, 2011 | Chronic Illness, Encouragement, Immune Deficiency, Thankfulness
I’ve been thinking of something for a few weeks now, ever since someone quoted a Bible verse to me about being perfectly and wonderfully made. To the person who quoted it, it meant I should claim wellness. I think they were worried I was ‘settling’ for being chronically ill. I know they meant to be helpful, but it started another round of soul searching on my part. Was I doing everything in my power to be well? The answer, once again, was yes.
Most people are well-intentioned and have no idea what it’s like to be on the receiving end of suggestions, even Biblical references, after they have finally come to an acceptance of their situation, whatever that may be. People who suffer from chronic pain or illness have been through the gamut of searching—so if you know someone who is in that spot, please offer prayer and friendship, but know they’ve been on the journey searching for an answer for a long time, and they certainly aren’t settling for anything. People don’t mean to, but when they insist you try this one more thing, it’s like they’re saying you would try their one more thing if you really wanted to get well—and if you don’t try their one more thing then you are choosing sickness and pain. This is incredibly hurtful.
I’ve spent a lot of my life ill, and in being so, I’ve searched out web pages, done research, taken natural medicines, tried out tinctures and teas, changed eating habits, and took loads of supplements all the while searching for those things that would fix me. Let me warn you, it’s a dangerous road to travel. Several people I’ve crossed paths with have turned their search into an almost religious-like passion. And some try to force their conclusions on others. There is franticness in their lives, an out of control feeling, a grasping for that thing. If you just drink this thing, or eat this thing and avoid that thing then you will have complete healing.
Other good-intentioned folks have said something akin to: “You were made in the image of God, He wants you to be well.” I will say this to that: If He wanted me to be well, you can bet I would be. Right now. Immediately with no action on my part except prayer and petition. DONE. My conclusion is that it is for some reason, for His purposes I am not. Which leads me to my next point that upsets any number of people, and hopefully encourages even more: I’m okay with that. If you’ve been reading my blog, you know that’s not an easy thing for me to say. But, it’s the truth.
Just like most folks, I have a tendency to thank God for the things that make me happy, make my life easier—and I forget that God is in control of the hard things like illness ( or please insert your form of loss or suffering here). Let me assure you, God is much more interested in my spiritual being than my temporary happiness (because my circumstances are always changing). So, I need to look at those difficult things and, because I know God is loving, be thankful for those things as well. Maybe I should be thankful for those things first because it’s during those hard times He draws me close, holds me up and carries me through. As Christians, we were never promised an easy ride—I’m not sure when that false teaching first arose (somewhere in the first century, I’m sure). But we are assured by His word that He never leaves us, nor forsakes us. And that is something to be truly thankful for.
Hebrews 13: 5-6 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? (Full text here.)
Paul, who suffered untold poverty, prison, shipwreck, illness, and pain while he lived a life passionately for our Lord shared the following:
1 Timothy 6: 17-19 Command those who are rich in this present world not to be arrogant nor to put their hope in wealth, which is so uncertain, but to put their hope in God, who richly provides us with everything for our enjoyment. Command them to do good, to be rich in good deeds, and to be generous and willing to share. In this way they will lay up treasure for themselves as a firm foundation for the coming age, so that they may take hold of the life that is truly life. (Full text here.)
Philippians 4: 12-13 I know what it is to be in need, and I know what it is to have plenty. I have learned the secret of being content in any and every situation, whether well fed or hungry, whether living in plenty or in want. I can do all this through him who gives me strength. (Full text here.)
by April | Oct 23, 2011 | Chronic Illness, CVID, Encouragement, Expectations, Immune Deficiency
I love the sound of the geese flying overhead as they leave thePacific Northwest for warmer locales. I know that some are really just moving from place to place here, because they stay in the area. But most are on their way south.
I remember once when my daughter was about 6. We had just parked the car and I saw multiple V’s of geese flying overhead. I rolled down the windows to let in the sound of their honking and grinned at my daughter, wanting her to share in my excitement. “Hear that sound? Those are the geese flying over on their way south. They’re leaving for the winter.”
Instead of having a warm fuzzy moment with my daughter, I learned something about her character. Unbeknownst to me, she had a deep-set fear of change (she’s still not happy about it, but it’s better now). Rather than share in my enthusiasm, she began to cry, “I don’t want the geese to leave!” In seconds, she became inconsolable. She wanted me to bring them back. I tried my best to assure her they would be back in the spring, but nothing I said made any difference to her.
I can identify with that. This past year I’ve had become accustomed to a new way of living. After a lifetime of illness, I was diagnosed with CVID (If you want to know what that is, please read here). The diagnosis explained why I’d been sick so often (starting at 4 mos with tonsillitis). But, at the same time, it ushered in this new phase of change, of letting go, of slowing down (consuming fatigue as my body does it’s best to fight off germs the best it can), of learning to protect myself from illness (RUN!) and how open doors in public places without touching them.
As glad as I was to get the diagnosis, I’ve fought the idea of it. I wanted a cure-all treatment. Now that I knew what was broken, I wanted the doctors to fix it. Well, that’s not to be. I can be treated with SCIG (subcutaneous immunoglobulin via weekly home infusions for the rest of my life), but I can’t be ‘fixed’ medically. I might have to fight this fatigue for the rest of my life. I’ll always have to be careful of germy places (i.e the public). And the treatments are quite expensive (so much so no one really wants to tell you how much they cost). We thank the Lord for our insurance and His provision to pay for it when I start in January.
Anyway, I didn’t want to have a chronic illness. I didn’t want to have a disability. I wanted my life back. But, what I came around to is this is my life. We had to change dramatically when my son was diagnosed some time back with a-typical celiac and other food allergies, and here we go changing again. It’s disconcerting, uncomfortable, and it’s really not much fun. But, God’s helping me handle it. I listened to a sermon today that reminded me of a very important truth:
God doesn’t often change our circumstances, but He can change us through our circumstances. And He’s ALWAYS with us.
Change is an un-comfy thing. But, like my daughter, with the Lord’s help I’m getting better at it. And I’m so thankful for that the love of the Lord is unchanging, never faltering, and always sustaining.
Psalm 9:9-10 The LORD is a refuge for the oppressed, a stronghold in times of trouble. Those who know your name trust in you, for you, LORD, have never forsaken those who seek you. (Full text here.)
Psalm 46:1 God is our refuge and strength, an ever-present help in trouble. (Full text here.)
by April | Sep 20, 2011 | Chronic Illness, Encouragement, Expectations, Immune Deficiency
Do you ever have one of those days where you wake from a deep sleep, which should have been restful, but the dreams you had erode that restfulness away? I had one of those last night. Slept hard and long, but awoke with the strangest trepidation.
In a nutshell, my dream brought up feelings I didn’t know I was having. In my dream there was a person who could do it all—and I mean all : work, take care of a home (spotless), cook entirely from scratch (grew wheat to make her own flour then proceeded to grind it and make pasta—as we are gluten free, I wasn’t as jealous of this one), taught her children, made an extra income by buying up goods for cheap and selling them at a garage sale for a profit of $890 (my dreams are always very detailed, even now I have an itemized list of the things she was selling rolling about in my memory)….I think the only thing this figure was lacking was a cape and tight pants. Speaking of tight pants, she also had a killer figure. Anyway, when I woke up and realized I couldn’t do even a portion of what she got accomplished I began to feel like…less.
I think that we all feel the need to do it all. Hopefully we acknowledge we really can’t and let stuff go. But, sometimes those ideas sneak into our heads when we aren’t looking. When we’re tired, ill, or overwhelmed from stress it becomes much too clear we are at our end and aren’t living up to our own expectations. Hmm…there’s that word again (see previous posts).
I think I’ve struggled my whole life to feel like a person of value. I mean, you can know it on paper, but there’s a nagging voice that says, “Do you really believe it?” As I adjust to this life of chronic illness, I’m looking more and more to the Lord for His value of my life, rather than my own. But, in times of exhaustion, relapse, what have you, those voices start wheedling in, stealing my joy—making me nothing.
So, on that note, I’ve got a few Bible verses I’ve looked up to combat the lies. Because, that’s what they are, out and out lies. No matter what condition I am in, I’m of value to the Lord. If I can’t get my house cleaned, He still loves me. If I don’t finish a lesson of math with my kids, I’m still under His grace. If I never feel entirely well again in this life—He’s got my back. He’s got me. Thank God, He’s got me.
The following is from one of my favorite Psalms. Read the whole thing in context here.
Psalm 139: 13-18 For you created my inmost being; you knit me together in my mother’s womb. I praise you because I am fearfully and wonderfully made; your works are wonderful, I know that full well. My frame was not hidden from you when I was made in the secret place, when I was woven together in the depths of the earth. Your eyes saw my unformed body; all the days ordained for me were written in your book before one of them came to be. How precious to me are your thoughts, God! How vast is the sum of them! Were I to count them, they would outnumber the grains of sand— when I awake, I am still with you.
When I am awake, I’m still with you. AMEN.
1 John 9-10 This is how God showed his love among us: He sent his one and only Son into the world that we might live through him. This is love: not that we loved God, but that he loved us and sent his Son as an atoning sacrifice for our sins. (Full text here)
Romans 5: 6-8 You see, at just the right time, when we were still powerless, Christ died for the ungodly. Very rarely will anyone die for a righteous person, though for a good person someone might possibly dare to die. But God demonstrates his own love for us in this: While we were still sinners, Christ died for us. (Full text here)
I hope today that you feel the sacrificial love of Christ wrapped around you and you are insulated from the voices of nothing by the love of Him who saves.
by April | Jul 1, 2011 | Chronic Illness, Encouragement, Immune Deficiency
I’ve been pondering the idea that good Christians don’t complain—no matter how difficult their circumstances. Since I’ve been dealing with illness for the past couple…er…many years (see previous posts) I’ve had a lot of time to think about this.
I’ve heard the following statement many times; maybe you’ve heard it too:
“They suffered from (insert type of suffering here) for ages, and not once did they complain or ask why me!” (This is usually said with an admiring voice.)
I don’t know about you, but statements like that can make me question my faith.
I’ve read many books on suffering (there’s some great ones out there) and none of them chided me for feeling down, for feeling at odds with myself, or for questioning God’s plan for my life. Instead, they were all about comfort in God’s word and encouragement for the day. In fact, the Bible has dozens of examples of people crying out to the Lord in their time of suffering. Job, David, Moses, Abraham, Jacob (he even wrestled with God, remember?), Paul, and my especially my Savior. Each one followed their pleas and prayers with submission that God’s will be done. They were honest in their plight, in their pain, and God comforted them.
Don’t get me wrong, it’s not okay to shake your fist at God—but He certainly expects us to cry out to Him in our time of need. It’s clear from His word that He loves us—and what loving father would turn a deaf ear on their child’s suffering? Even if we don’t feel His presence due to our circumstances, He’s with us, every step of the way.
God desires intimacy with Him. If I’m not honest in how I feel, then I’ve built a blockade between Him and me. If I hide away my pain and put on the “happy shiny people” face, then I’m also not being honest with those around me. And that gets in the way of opportunities to love and comfort others.
Let me ask you this: who are you more likely to turn to when you are in need? A friend who puts on the happy shiny face and pretends life is all sunshine and rainbows even when they are falling apart, or the friend who has a close intimate relationship with God, and has learned to lean on Him during hard circumstances, sharing their joys as well as pains?
God’s Word says: Praise be to the God and Father of our Lord Jesus Christ, the Father of compassion and the God of all comfort, who comforts us in all our troubles, so that we can comfort those in any trouble with the comfort we ourselves receive from God (emphasis added). For just as we share abundantly in the sufferings of Christ, so also our comfort abounds through Christ. If we are distressed, it is for your comfort and salvation; if we are comforted, it is for your comfort, which produces in you patient endurance of the same sufferings we suffer. And our hope for you is firm, because we know that just as you share in our sufferings, so also you share in our comfort. (2 Cor 1:3-7).
In the past few months, I’ve had people come alongside me to comfort me, and having been blessed by that, I have been able to come alongside others and be a comfort to them. I haven’t had all the answers (not my job, thankfully), but I’ve been there. Oftentimes being there, praying or just listening, can make all the difference in a person’s day. Although this has been a very hard time, experiencing both sides has blessed me beyond measure.
by April | Jun 12, 2011 | Encouragement, Immune Deficiency, Uncategorized
I’m noticing two reoccurring themes in my life in the past three years: serious illness and the encouraging words of others telling me not to quit, to keep on praying and trust in God’s providence.
First, it was my son, then my husband (who are both doing very well now) and this year it’s my turn. Although, all in all, I’d rather have been skipped. I’ve recently been diagnosed with an immune deficiency. I’ve had it all my life—often sick throughout childhood into adulthood—but it wasn’t until this year it really clobbered me. This is typical of genetic immune disorders. That doesn’t make me feel any better, but it adds clarity!
I have to admit there’s been many times in the past few months when I have been at the end of my rope, unable to think clearly, suffering from severe fatigue, fevers and exhaustion and feeling not only useless—but worthless. Those are lies of the enemy, but it’s hard to look up when you are feeling like that.
Every time I’ve felt like I just can’t deal with it any more, someone comes alongside me, get’s in my face (in a loving way) and tells me not to quit, not to give up and keep praying. The timing has always been perfect—when I most need to hear it. Just recently one of my doctors really gave me the pep talk I needed. She looked me in the eyes and said, “You’re a mess, but I’m going to tell you something. Don’t give in to this, don’t give up, keep going, don’t quit—and pray!”
I believe God is sovereign, but illness and circumstances can cloud me from seeing His presence. When I remember to look for those moments, I find many throughout my life (see previous post Picket Fences). But when I’m down, I don’t remember them well.
Lately though, I feel like God is going out of His way to remind me I’m not alone. Through His Word, through friends speaking words of encouragement, through the occasional song on the radio—these reminders that I should keep going when I most want to quit are everywhere. When I see His encouragement, I’m humbled. He’s not distant, watching me suffer—He’s right here, holding me up, giving me strength to face the day.
Psalm 46:1 God is our refuge and strength, an ever-present help in trouble.
John 16:33 I have told you these things, so that in me you may have peace. In this world you will have trouble. But take heart! I have overcome the world.
1 Thessalonians 5:11 Therefore encourage one another and build each other up, just as in fact you are doing.
So, last week I posted about my nervousness in starting subcutaneous treatment for my CVID. Well, on Tuesday, I took the plunge (no pun intended!). I also had a lovely visit with an excellent nurse who trained me. She explained each step, and we got me numbed up for the injection sites. Before I knew it, we were hooking me up to the pump (this involves four subcutaneous needles and tubing being attached from my abdomen to the pump). Then she took my vital signs. My blood pressure is usually excellent, but on Tuesday, it was higher than normal. So was my pulse rate.
