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 | Jan 18, 2012 | Chronic Illness, CVID, Encouragement, Expectations, PIDD, Thankfulness, Writing
Sometimes, I find it hard to write. Some days my head is so wrapped up in my own troubles, it’s hard to think clearly. I’ve been having such a time for the past couple weeks (thus my lagging blog).
So, here’s what’s up: At long last, after months of waiting and dealing with insurance companies and changing doctors and confirming diagnoses with second opinions, I’m getting ready to start treatment of my CVID (Common Variable Immunodeficiency). The intro packet from the medication company has arrived (still have to watch the how-to video), and I was just called and told my medication and pump will arrive on Friday. The last step is waiting for the nurse to call me and set up three training sessions.
It’s been a struggle getting here. And now that the day is near…I find I’m filled with trepidation. This is a life-long treatment—one I’ll have to do weekly, and that will cost a lot of money. Questions fill my head: what if it makes me feel worse? What if it doesn’t work? What if this is the quality of my life for the rest of my life?
I’m not often led by fears. I admit I don’t like the unknown. I like to know what’s coming, which is probably why I’m not excited about this. Logically, I know that I should put my hope in the unchanging love and care of the Lord. But, sometimes, logical thinking doesn’t help keep my emotions in line!
After joining a PIDD (Primary Immunodeficiency Disease) support group, and hearing some of their trials and challenges, I realize that God has orchestrated a lot of things in my life to get me to this point. I’m thankful I’m not sicker. I’m thankful that I live within an hour’s drive of my immunologist (many folks have to drive 3+ hours to see one experienced with PIDD). I’m thankful that God has provided the money it’s going to take to pay for this. I’m thankful that I’ve got an excellent primary care doctor after many years of searching for that right connection. I’m thankful my doctors listen to me (this is a rarity, unfortunately, for many PIDD sufferers). As the list I type continues, I’m seeing a pattern here—that God does indeed have things in hand, and that I need to rest my fears on Him instead. I’m so thankful that I can.
I’m reminded that the Lord knows I was born with this. He’s known what is coming my whole life. He knew I’d grow more ill over time, knew where I needed to live to get good treatment, knew I’d need a wonderful supportive husband and kids–knew this was going to be hard. Although we aren’t near our families, we’ve been mightily blessed with supportive, praying friends nearby who understand and are there for us. You know who you are—thank you doesn’t begin to cover it. But, thank you.
When you feel afraid, how do you remind yourself of God’s ongoing provision in your life? I’d love to hear from you.
Romans 8:31-39 What, then, shall we say in response to these things? If God is for us, who can be against us? He who did not spare his own Son, but gave him up for us all—how will he not also, along with him, graciously give us all things? Who will bring any charge against those whom God has chosen? It is God who justifies. Who then is the one who condemns? No one. Christ Jesus who died—more than that, who was raised to life—is at the right hand of God and is also interceding for us. Who shall separate us from the love of Christ? Shall trouble or hardship or persecution or famine or nakedness or danger or sword? As it is written:
“For your sake we face death all day long; we are considered as sheep to be slaughtered.”
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. (read the whole passage here)
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).