Posted by: AMcGowan | 01/28/2012

I Can See Clearly Now

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)


  1. That has to be a good sign! Hold onto it!..Let it give you strength for the next treatment..

    • Hold onto that glimpse of wellness and especially to God himself. I am encouraged as I think you are too. I love your verse! Abundant prayer ongoing my friend!

      • Thanks for your prayers, Valerie! Keeping my eyes on HIM!

    • Thanks, Billie Jo. Am doing so!

  2. Praise God for the window of promise He gave you! I’d never heard of CVID. Had to google it. So sorry to hear you suffer with this odd disease. I have rheumatoid arthritis and struggle with the flu-like symptoms too–achiness, chills, nausea. I remember years ago when I got steroid shots in my knees, the next day, I walked the length of the church and felt like I was floating. It took me the longest time to understand why I felt that way–I wasn’t limping! You’re right in that chronically ill people set different standards for themselves and forget what “well” feels like. I’m praying for you sweetie! Hold onto that promise. There’s more to come!!

    • Thanks for the encouragement, April! Having my 2nd infusion tonight. They say it can take about 6 mos. to get our antibody levels up to normal. I’m keeping my eyes on Him and watching for the window 🙂 Sorry you suffer, too. Rheumatoid arthritis can be so painful. Folks that live with ‘invisible’ illness have their own hard road to travel as they keep their eyes on trained on the Lord. So glad you have found relief on your journey. May the Lord continue to bless you on your road, as well.

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