Catching Up--A Bumpy Month of Thanksgiving

It's been a bumpy month or so.

The shingles came back. But I didn't catch them in time  to stop them with a higher dose of anti-viral meds--because I couldn't breathe.

I still don't know why. Two episodes of severe shortness of breath that worsened with any activity (even brushing my teeth), each lasting about four days, and coming fairly soon after I'd taken my methotrexate injection for that week. And now it seems to be gone. I haven't gotten all of the test results yet--but the immediate results were that my lungs and heart looked fine. The first thought was that I had a pulmonary embolism, but that was quickly ruled out. Between the shingles and not being able to breathe, I was left so weak I could hardly walk around my house, hardly sit at my keyboard. I overdid it once or twice and set myself back. The fatigue and weakness from the shingles virus has been terrible.

I am now, finally, beginning to recover. I rode my exercise bike 10 minutes this morning and put a load of laundry in without being completely wiped out. I feel like I'm on my way back up!

A second-opinion rheumatologist visit, trying to find some other options to deal with my shingles vs. RA drugs difficulty gave me very little new information except to confirm that, in fact, I do have RA.

Due to the shingles and breathing problems, I am off RA meds except for plaquenil and 5 or 6 mgs of prednisone and celebrex. I'm going to see how long I can last on that. For those unfamiliar with RA, that could be helpful, or it could be like throwing a tablespoon of water on a bonfire. We'll see.

My gp has been wonderful. I am so grateful for a doctor who is available, who will listen and go to bat for me. In a system where this is increasingly rare, I realize what a blessing I have.

My husband has worried and folded laundry and taken time from work to listen to doctors tell me what they don't know, again.

And this. No matter how I feel, I cook for my family. But not this month. Not much. Both my kids got a bit of gluten from a restaurant where we picked up food one evening when I didn't cook. Both were affected, but my son is so much more sensitive--he missed three days of school. Friends swooped in and filled my freezer with meals--cooked in my house, with my recipes and my pots and pans to avoid the risk of any contamination.

One gracious friend drove me to appointments and waited when my husband couldn't.

In this month of Thanksgiving, I am grateful for many things. My sweet, sweet husband. My children--who just kept going when mom didn't. My family--those phone calls can make all the difference in the world! And I am grateful for my little Bible study group of women; the ones I've prayed with and relied on and couldn't do without.

From one of them, this reassurance, when I felt like it was all getting to be too much. (Hopefully she won't kill me for quoting her!)

(I) still see my sweet, active, giving, energetic friend every time I look into your eyes past the fatigue and pain - even on a good day.

I pray so often for a treatment plan that will allow you to function and ease the exhaustion.

Hang in there - I will walk this path alongside you, you can count on that.

Happy Thanksgiving

Hope you are blessed as I am

Sherry

Day Two, Getting Glutened

He is no better. More Maalox. Tried some Benedryl, just to see if it calmed the nausea and helped him sleep, and he said it helped a little.

He is missing his second day of school--which means a ton of make-up work. I made him gf banana nut muffins as a treat, but he hasn't eaten any yet.

Pray for my little man.

The sun is shining outside. . .we are just waiting for some inside.

Getting Glutened

It's a cold and dreary outside. . .the first official day of fall. No sunshine. A cold rain fell earlier.

The mood inside our house pretty much matches. Someone--no one is confessing--put a box of regular cereal in the gf pantry. (NO gluten-containing items are EVER kept in the gluten-free pantry.) In a fit of hunger, Alec grabbed the box, poured, and began to eat. We buy cheap cereal. The labels on all the cereals look a little weird, so he didn't immediately see the difference, and he was shoveling so fast he didn't realize what he'd done until after three or four bites.

Three or four bites. That's like three or four bites of poison to a celiac. Three or four bites is the most gluten he's had since last November when he snuck a Ding-Dong after the first week of the gf diet. He's never purposely eaten another bite of gluten again. He was so sick that evening he couldn't sit up in a chair.

Like he is today. He spent the morning alternating between the bathroom floor and his bed, but now he's graduated to the couch. As soon as we realized what he'd done, we had him start drinking lots of water and gave him Maalox, hoping to get the gluten through asap.

There's not much info available on what to do for accidental gluten ingestion--doctors want celiacs to simply stick to their diets. But it happens, so I spent the morning searching the web for other ideas about what I might do next time. I found only a few suggestions, and since they don't seem likely to be harmful, I'll pass them on here. One mother said her son uses activated charcoal if he accidentally eats gluten--apparantly you can buy it in capsule form. Alec once had to take this in the er (another story for another time), and I can understand the theory. Another celiac suggested antihistamine for the stomach upset and to help with sleep disruption that sometimes comes with the gluten reaction. Other suggestions were just for treating symptoms: antacids for indigestion, immodium for diarrhea, meds for pain, etc.

The most difficult part of being a parent has to be seeing your child suffer for any reason. Before Alec was diagnosed, we had plently of days like this--days where he lay on the couch and didn't speak, didn't move, didn't eat. But it's been nearly a year of good health for him--I am oh so grateful, you cannot even imagine how glad I am to be able to type that!--but I hate seeing him this way today.

I'm calling my doctor about the activated charcoal--I'll post here about what he says. I'm not sure how much celiac experience he has, so I guess we'll start testing his knowledge now.

And I'll let you know how long this lasts. Tomorrow is a new day. Even as I was typing, the Oklahoma sun came out again, and the white moths started dancing round the zinnias outside my window. Hopefully Alec will soon be doing the same--well, not the dancing part, and not around the zinnias. Ugh! You know what I mean!