April McGowan

You’ve Got a Friend In Me

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)

 

 

 

18 Comments

  1. Chana Keefer
    Nov 7, 2012

    Very helpful post, April.

    Thanks for sharing & I’ll be praying for your health.

    Chana

    • April
      Nov 8, 2012

      Thanks, Chana! I so appreciate all the prayers I can get 🙂

  2. Marriott Cole
    Nov 7, 2012

    How wonderful that you were able to change your attitude and feel better in every respect. You are a very insightful young woman !Miss you. Love in Jesus, Marriott Cole

    • April
      Nov 8, 2012

      Miss you to MC. Hope you are settling in at your new place 🙂 Many blessings!

  3. Roseanna M. White
    Nov 8, 2012

    Thanks so much for sharing, April! Our attitudes can affect so much, you’re right. When we give our trials constantly to Him and trust with a smile, He really does help us with the burden. Praying for you!

    • April
      Nov 8, 2012

      Hmm…well, I don’t always smile, but I do walk in faith and trust in Him. Thanks, Roseanna!

  4. tcbischof
    Nov 8, 2012

    Awesome April! I am still looking for this attitude shift for my oveheating and struggle continuously for weight loss. I’m getting closer bwith all the head knowledge but still haven’t had the heart awareness. Love you friend. Thx for sharing.

    • April
      Nov 8, 2012

      Thanks, Christine! Everyone has a struggle of some sort. It’s such a blessing to be able to rely on the One who can supply our every need. Hugs.

  5. Valerie Becker
    Nov 8, 2012

    You have such a gift for interjecting humor into serious circumstances and then providing encouragement for all the rest of us. I will continue to pray for you….oh, and your “immuno-buddies”.

    • April
      Nov 8, 2012

      Thanks, Val. You gotta keep looking at the ridiculous side to keep it light :)…although, I have to admit, I don’t always find humor until the hard time has passed. HUGS.

  6. LeeAnn Macklin
    Nov 8, 2012

    Love you, miss you, wish I could be with you and help somehow. I am most thankful, however, that you know from Whom you receive you true strength – prayers for you every day even tho I dont get to call often
    L

    • April
      Nov 8, 2012

      L! Miss you, too! One of these days, I’m going to get over your way….or half your way. Fatigue sucks! Thanks so much for praying. Hugs and many blessings!

  7. elainemanders
    Nov 8, 2012

    I know exactly how you feel, April. I just went through a complete GI test. The doctor came in and asked if I was taking the new medicine he’d prescribed. I said I was taking only one a day since it caused cramping. He said it was supposed to prevent cramping. I told him I never had cramping in the abdomen, but spastic pain in the back and sides at different places usually with gas, like a baby’s colic. I got that blank stare you speak of and realized he’d never encountered someone like me. As with most these tests I’ve had, I’m hoping it shows
    something that can be treated, but after 30 years, I’ve about given up hope. Maybe I’ve been called to suffer this way like the Apostle Paul and his thorn in the flesh.

    • April
      Nov 8, 2012

      Oh those blank stares! It took me 41 years to get a proper diagnosis, Elaine. There’s a term we unusual ones use–that’s Zebras. Doctors are trained to look for horses, not zebras (in other words, look for the simplest of answers not the complicated unusual ones) and so many of us fall through the cracks. I’ve struggled with gut issues as well. Having pains throughout my abdomen, I noticed they got better if I took reflux medication. And if the medication wasn’t strong enough, or changed, the pains would come back. I reported this to my GI guy and he just said, “huh, well, there’s no reason for that” and sent me on my way. HOWEVER, I take the medication, I don’t have gut pain, tadah. Being our own advocate is so important. Praying you get true answers, and if he doesn’t have them, then you’ll find someone that DOES.

  8. David N. Walker
    Nov 8, 2012

    I’m so glad we found each other out in cyberspace, April. This is my second blog of yours to read, and both are powerful.

    Those of us who have never had a condition such as your have no idea what it’s like. I believe I’ll thank God that I have diabetes and cardiovascular problems instead of something much worse.

    • April
      Nov 8, 2012

      David, everyone has something to carry, something to deal with, something to lay at Jesus feet. Thanks for your kind comments 🙂 Glad we’ve crossed paths.

  9. Fiona Burky
    Dec 5, 2012

    I could totally empathize with that dr. being unsure what to do with you since you have CVID. My PCP literally told me that she could no longer be my dr. as I was much too complicated of a patient for her and I would have to find another dr.! She obviously didn’t want to take the time/effort to learn about this new genetic disease she’d never heard of before, so probably better off without her. I guess she just wants to treat cuts and flu cases. Anyhow, did find another PCP who was less overwhelmed by difficult cases. I did go through a few immunologists, tho’, before we discovered that the best course for me is to do my SCIG on a daily basis at a slow rate. I can get up in the morning, feel like I’m coming down with bronchitis (again), start my infusion and by the time it’s done I feel much better. When you think about it, normal bodies produce antibodies on a daily basis so my immuno. was open to me doing it on a daily basis. Other than having to do it slowly, has worked out fine. I, too, still struggle with fatigue but is much better than it was. At the beginning I was literally in bed most of the time (started being treated about 5 yrs. ago), and now I just feel tired all the time but can now get stuff done. I’m always so happy to hear when another has FINALLY been diagnosed with what has been bothering them for so long and am happy for you that you now know the reason! God bless!! Fiona

    • April
      Dec 5, 2012

      My first immunologist wasn’t really experienced with PID–but he said he was. Now that I’ve been doing this a while and self-educated, I look back on his advice and what he said, and realized how off he was. I went and got a second opinion (based on a doc recommended by IDF (Immune Deficiency Foundation) and found a ‘home’ there. He knows his stuff, he listens and he’s proactive. Not only that, he has a dedicated nurse (who is a lovely person) that handles all his PID cases and gets back to me the day of my questions when I call. And then I was doubly blessed to find a PCP that would listen (took some time, though). She took all the research I handed her and studied it. Then she put recommendations into the computer for medications that work and doses based on my immuno doc’s recommendations. Unfortunately, she’s such a good doctor, that she’s hard to get into, so I sometimes have to see others in her office. I’m so glad you found someone who is in your corner. Seems hard to find with our conditions, and I’ve heard many sad tales of people going mistreated or untreated for years even after diagnosis. Many blessings, Fiona! Thanks for sharing!

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