Posted in Being a Mom, Being a Wife, Dealing with Trials, Faith, Family, Inspiration, Life with CF, Uncategorized

Pain and suffering


Last night was a classic “100% Chance of Change” moment.  You’d think by now, after all I’ve been through, that I’d come to expect them, but it doesn’t always work that way. It seems that no matter how prepared I think I am mentally to deal with life’s surprises; there are times when they still completely catch me off guard. This was definitely one of those moments. If God wanted to teach me a lesson about complacency, He certainly achieved that goal.

It had been a good day. Despite the weather changes, I had not had a sinus headache and overall I felt good. I knew the answer to the question “What’s for dinner?” and the sun had started shining, just in time for Meghan’s soccer game. I was excited that I had finally gotten a Facebook page set up for the blog and was happy to see the “Like” count going up. Bob was on his way home from work and planned to meet Jacob, Meghan and I at the game. Everything seemed under control for an uneventful, relatively quiet evening. That’s when everything “went south” in a hurry. Not more than an hour later I was lying in my bed with a 102 fever, reduced to a teeth-chattering heap. My head hurt, my body ached and I had chills so bad I swear you could hear my knees knocking together under the blankets.

No, it wasn’t the typical seasonal culprits; it was a flare-up of my Cystic Fibrosis Arthropathy, or CFA, for short. CFA is an immunological and inflammatory arthritis that occurs in people with CF. Only about 5% of the CF population is affected by CFA; and well, I guess I just happened to draw the short straw. While it’s a topic that has not been highly publicized in CF forums and research, for those of us whose lives it impacts, I can tell you it’s not a complication easily overlooked.

When people ask me to describe how I feel when I have a CFA flare-up, there are honestly times where I think there are no words. Now that I’m thinking about it while I am experiencing it, excruciating, agonizing and distressing all come to mind. It’s like someone flips a switch. One minute you’re up and active and the next you can’t get out of bed. During a severe episode it hurts to breathe, there is no comfortable position because every inch of your body feels like it’s on fire. The slightest turn of your head or movement of your fingers is impossible because you just hurt everywhere. I’ve had Bob walk me and/or carry me to the bathroom, to the car, into the Emergency Room during times like these. It’s not only immensely painful for me, but terribly alarming to him and the kids, who want to help, but know there’s nothing more they can really do.

During a less intense episode like what I’m experiencing now, I have specific places that I hurt, most of my large joints and some small ones in varying degrees from achy to insufferable.  Again, it usually starts with the fever, then the headache and body aches, just like the flu. After downing some Tylenol for the headache and fever, I wrap myself in about 10 layers of blankets wondering, “Dear God, what can this be??!!” Then the indescribable but familiar pain sets in and my first reaction is to start looking for the welts.

The “welts” are part of a characterized rash that accompanies CFA. They appear all over my lower back, buttocks and upper thighs. They’re raised, red and tender to the touch. (You can see a picture of them on my Facebook blog page, as I posted one, just this morning.) As soon as I see them erupting, I know exactly what’s happening; and while it hurts unimaginably, at least I can take comfort in knowing what information to share with the doctor so that we can begin immediate treatment.

Treatment is usually a mild narcotic for the pain, since with my reflux disease NSAIDs only irritate my stomach lining further. Then we usually start a burst of steroids. Oh Prednisone, how I loathe thee! If there’s any drug that I have a love/hate relationship with, it’s Prednisone. It can make my allergies and arthritis so much more tolerable; yet, it can likewise be so destructive with its list of massive side effects. Night sweats, weight gain and insomnia are my favorites, just to name a few.

So I guess what I’m trying to say with all this is that CFA is no picnic. It’s one of those nagging complications that come with CF that causes immense amounts of pain and suffering. It’s also a complication that wreaks havoc on my head, because what else can you do when you’re lying in bed, hurting all over, other than self-reflect? Today I cried. I just hurt all over and I feel completely useless. It’s a weekend, a sunny Friday and I’m stuck inside. My kids’ school is sponsoring a fund-raising day called “Waltz for Waite,” and I can’t be there to videotape or take pictures of Meghan and Jake dancing the “Electric Slide” and “Cotton-Eyed Joe” that they’ve been practicing for weeks. I missed my daughter scoring a big goal for her team last night and poor Jake, he has a bad cold and is worrying about whether he made me sick. When your seven year-old is given an assignment to “write a moment with a beginning, middle and end” and he writes, “Yesterday I started hacking. Today I had to stay home from school because I felt so badly. Now my Mom is coughing too,” that just seems completely unfair.  What exactly are memories for when you have to write about a moment like that?!

I know that God loves me and that He’ll get me through this in a way that He chooses (He always does), but it doesn’t make it less painful in the process. I don’t feel brave, I don’t feel strong and I want it to be over with, right now.  I wonder if Jesus felt the same on the cross. With the sins of the world resting on His shoulders, with the crown of thorns bearing deep into his head, with nails that pierced His hands and feet, he too must have felt incredible anguish. Matthew 27:46 tells us that He cried out in a loud voice “Eli, Eli, lema sabachthani?” (which means “My God, my God, why have you forsaken me?”). Today as I endure this pain and restlessness, I guess I ought not to forget what His suffering achieved. I believe that someday, in a time unbeknownst to me, there will be no more CFA, no Cystic Fibrosis, no suffering, no pain of any kind. I look forward to that day, selfishly, and yet I’m happy that I’ve had the opportunity to live the life I’ve lead, pain and all. My life is brighter today, just having you all in it. TGIF!



Christ-follower, wife, and mother of two living and succeeding with Cystic Fibrosis. Come check out my blog 100% Chance of CHANGE that follows my life's journey, one day at a time. Stories about life, raising kids, marriage and relationships, family, my CF struggles, faith and so much more!

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