Six Months: My Journey with CVID

Last year at this time, I’d been battling chronic sinusitis since February.
I was on antibiotics almost constantly.
My left knee would swell up every week for a few days, then mysteriously go down. I’d hobble around with a  huge knee, and not know why. Rheumatologist was stumped.
I’d wake up every day with my eyes swollen shut and need a few minutes to soak them until all the crusted discharge had gone away. EVERY DAY. Eye doctor said there’s no issues with my eyes.
I got the flu, on top of constant ear and sinus infections. And pneumonia. And bronchitis.
My skin literally hurt to the touch. My family would hug me and I’d cringe. Even shaving my legs hurt.
I had to meet with the Hopkins pulmonologist about wheezing that wouldn’t go away and my lungs being affected by all this infection, worrying that I’d done significant damage.
I was sick and tired. Of everything. I cried. At home, with friends, with the doctors. Feeling this way, not having any answers. No doctor could figure out exactly what was going on with me. Why even sinus surgery did absolutely nothing? Wondering why my body was failing me and I was feeling so. freaking. horrible. It sucked.

This continued until May of this year. 15 months of this crap. Until I saw an allergist to rule out every last thing. It was this allergist who sent me for bloodwork.

And now it’s officially been six months since my world was rocked. I’ll never forget that phone call. Never a good sign to see a doctor’s cell phone on your Caller ID on a Saturday morning.

“So, Elizabeth, your test results came in. It appears you have Common Variable Immunodeficiency, or CVID.”  

At that point, my head started spinning and I started hearing words like “call Hopkins first thing Monday morning” “lifelong disease” “no cure” “weekly injections” “higher risk for cancers and other autoimmune diseases” “here’s a website to check out until you meet with the doctor”….

Then came the tears.  

Suddenly my mind went to the worst place. All those things that could happen, were happening in my mind.

I was going to get ALL OF THOSE THINGS he mentioned on the phone. Every last one of them. Sure, there’s a very good chance I won’t, but I wasn’t thinking like that.

My husband held me as I cried. And cried. And cried some more. I called my parents. And cried. I sat down at my computer and wrote a mass email to my friends because I knew I couldn’t explain it without crying 87 more times.

Within seconds, my world was changed forever.

And then I felt God working like I’ve never felt before. I felt a calmness come over me, and strength I had NO idea I had. I felt like this was going to be ok. I was suddenly Superwoman, and this was not a death sentence. Bring on the gamma globulin! I can DO THIS!

Then I met with the Head of Immunology at Hopkins that very week, since my IgG counts were “remarkably low.” (I’m probably repeating a whole lotta information from May’s post, probably should’ve reread that before typing this;) I apologize). Days later, I was returning for my first treatment. Guess I wasn’t quite the Superwoman that I thought because I passed out for the first time in my life, then threw up in the doctor’s office when I came to. Awesome. I like to make a first impression apparently;) We all got a lot of laughs about this in time, and here I am leaving my first treatment…

From then on, my husband has been my my rock star nurse and has given me my weekly treatments.

Don’t know WHAT I’d do without this man. We’re testing that ‘for better for worse, in sickness and in health’ thing for sure, and passing with flying colors.

This treatment is not overnight. So in the summer, when I still wasn’t feeling great, I doubted. A lot. I hated it about myself, but my ‘I AM SUPERWOMAN HEAR ME ROAR’ mentality had worn off. I’d have pity parties for myself. I’d worry that I’d be the person this wouldn’t work for. And then what? How would I get better?

I was becoming someone I hardly recognized.

Then my husband and I were having a conversation one day, when I was having one of those really bad days and convinced this was not going to work. He kept reminding me that some patients take a year or longer to feel better. I wasn’t hearing any of it. Then he said something I’ll never forget:

“You know honey, for someone with such great faith, you’re not really living that way.”


Life-changing. He was right. I wasn’t. I needed to dig deep and find that faith that I knew would get me through this. I prayed. I started waking up earlier than the kids so I could make time to say my devotionals. Went to the library to get out even more devotionals. And I felt different. Such a good different. I knew I had to put all of this in God’s hands and I would be ok. I started living with much less fear and doubt. Fall came (aka, the start of my sickest parts of the year), and while others around me got colds and sicknesses, I was feeling fine. WHAT?!

I was now living with hope.

My treatments became much less nerve wrecking (for me. For my husband, they’ve always been a breeze, or at least he’s a good actor;). I pour my glass of wine and he sticks those two needles in my stomach and I read my smutty magazines for 40 minutes while other people’s blood makes mine work;)

It’s been six whole months.
And guess what?
I haven’t been on antibiotics since May.
My knee swells up once every few weeks just the tiniest amount, I barely even notice it.
I wake up every morning with eyes that pop right open.
I’ve barely gotten a case of the sniffles. And when I do, it’s there for a day or two then goes on its merry way.
And hugs? Bring ’em on. My skin doesn’t hurt anymore.
I am getting better and better.
And as for the future? I don’t worry.
Because I know whose hands it’s in.
And it ain’t mine.

I was thinking the other day that I’m almost happy this happened to me. It has taught me more lessons that I could EVER have imagined on that day in May. I’ve learned so much about myself, my faith, empathy, compassion…the list goes on and on. My children are well aware of it all, and they’ve learned a thing or two as well. They come into the room and I smile and show them what’s happening and why, and I’m glad I can teach them that even through stuff like this, we’re more than ok. Life isn’t always easy and there are ups and downs, but you’ll be ok. I feel good that I can pass this lesson onto them.

We’ve all got our battles, and this happens to be one of mine. No one goes through life without some rough patches. Sometimes they bombard us, one on top of the other, and we can barely catch a breath; sometimes we go through long periods before a doozy hits us, but no one’s immune (ha! how’s that for a word choice?! hehehe, sorry)….but through them all we learn. We’re strengthened. We come out better than before, with wisdom and experience to help us when the next one hits. And those good times? They become even sweeter because of these circumstances. That saying, “just because today was the worst day of your life doesn’t mean tomorrow won’t be your best…just gotta get there” has become one of my favorites. It’s so very true. Life can turn on a dime…but that dime can be turned over again. This, I have learned.

I went to Hopkins yesterday to meet with my team of doctors. Bloodwork had been ordered in November and we’d go over the results.

My IgG count was 112 in May. Thanks to my weekly injections of gamma globulin, it is now 878.

Everything was NORMAL.


Hallelujah. No passing out this time! The doctors, nurses, my husband and I were elated, almost dancing in that office. What a different experience six months later.

Thank you, God. Not only for the treatments working, but for my faith that has been strengthened immensely throughout this journey. That the worry and fear are gone and I am back to enjoying life again, day to day, without being scared to death about the future. I know whatever happens, I’ll be OK. To me, that is even better than the news I heard from the Head of Immunology yesterday.

This year has been such a test. A test I struggled with and was failing for a while, but in the end received an A+.

Thank you, God.

My husband took this picture of the kids and me on my birthday in October, and for some reason it makes me tear up when I look at it. But in such a good way. I see a healthy woman who has come SUCH a long, long way this year, surrounded by love.

Can’t think of a better birthday gift than that.


  1. Tiziana Revell says:

    God bless you!! When I was reading your symptoms and no immediate solution or findings, my mind instantly went to an autoimmune disease. My husband was diagnosed with ulcerative colitis almost 2 years ago. He was pretty sick before he was diagnosed and he is our sole provider, so the worry, the “through sickness and in health”, the compassion, and so forth, I so relate to in this post. I too have learned so much about life and what’s important and enjoying the good when it’s good through his autoimmune disease. My heart goes out to you : )

    • Thank you so much, Tiziana! I’m sure that was a difficult time with your husband’s diagnosis – my heart goes out to you both as well! It sure does teach us a lot about life. In sickness and in health for sure:) God bless!

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