The Cimzia injections were due on Thursday, but I put them off until Friday, because I had tickets for the midnight showing of Harry Potter and the Deathly Hallows Part 2. Just in case any side effects showed themselves, I didn't want to take a chance of missing or not enjoying the movie. It was great, by the way. My daughter, Amy, and I went back and saw it again at 11 a.m. on Friday. Good times.
So Friday, I took the two Cimzia injections. They hurt, as usual, but other than that, I didn't notice any side effects. In fact I haven't noticed ANY effects AT ALL from the Cimzia yet -- good or bad. Maybe it's too soon. Or, maybe it won't be something that works for me. Any differences I've had in GI symptoms since starting the Cimzia can't be attributed to it, I don't think.
Cimzia didn't prevent the flare up on July 4th weekend -- the one that I got the Prednisone to bring under control. And the symptom relief is directly attributable to the Prednisone, in my opinion. I was grateful for those feeling-better days. Since last time I wrote, I've eased back into solid foods. I went to a bridal shower and family reunion, and ate normal food (well, some of it anyway), and enjoyed it! Hooray! And I drove three hours each, to and from Idaho, without any emergency, don't-know-if-I-can-make-it-in-time rest stops. And GI symptoms didn't make me miss one minute of the Harry Potter finale movie. Mostly, I've been free of cramping and diarrhea until today. And it hasn't gotten that bad so far. Relatively minor at this point, other than needing to stay near a rest room for a couple of hours tonight.
In October I'm giving three 90-minute presentations at the National Association for Home Health and Hospice convention in Las Vegas. I've presented and taught on a national stage before, and have managed to avoid any embarrassing problems. You know, like having to run from the stage with hundreds of eyes following my unsuccessful attempt to get to the rest room in time (one of my nightmares, of course). But it's always required some extremely careful planning. Liquids only, intense prayers and anticipatory antidiarrheal meds on the day of my presentation seem to do the trick. But I worry that one of these times I won't be so blessed.
Even more important in October will be my daughter, Megan's wedding day. I would dearly LOVE to feel great for that!
Wouldn't it be nice if, by October, the Cimzia actually DID work, and I was symptom-free and feeling like a relatively normal person by then? For that I would be truly grateful. On the other hand, if the Cimzia HASN'T made a significant difference by then, I think I'll fire it.
OK Cimzia, did you hear that? You've got three months to make a difference! Or else!
Take care,
Beth
Sunday, July 17, 2011
Saturday, July 9, 2011
Looking up
It's day 9 of the Prednisone taper, which means I'm down to two pills daily. I only have a few more doses. And it's a good thing. The old familiar side effects are creeping back. My feet, hands and mouth have that fuzzy, numb feeling that steroids always bring on for me. My voice is a little hoarse. My attempt to sleep without a sleeping pill last night? Not good. I finally gave in at 4:30 -- took a sleeping pill and turned on Harry Potter and the Sorcerer's Stone. I was finally asleep on the couch before he met the Hogwart's Express. But my GI system is fairly calm right now. No pain. No diarrhea. No obvious tummy swelling. That part's good.
Of course, that could also have something to do with my hesitancy to swallow anything more fibrous than a piece of white bread or banana. Mostly, I've been sticking to full liquids -- instant breakfast, butternut squash soup, frozen lemonade, frozen yogurt shakes -- and squishy stuff -- hard-boiled eggs, potato salad (sans celery and onions), rice, noodles and such. Yesterday I got really daring and ate a hamburger, which I chewed the heck out of. It tasted good, though, and it didn't give me grief later. It's so hard to tell whether I feel better because I'm not running bulky food through my system or because of the steroids.
Probably both, of course. Before I started this course of Prednisone at the first of the month, nausea and pain were nearly constant. Right now, not so much.
Of course, there could still be a stricture of sorts that I don't know about. But for now, it's not bothering me. I fantasize that if I just never eat raw vegetables, whole grains, anything with a peeling or that requires a lot of chewing again, I'll be fine. I can live without those things, right? Maybe I have to. We'll see.
For now, I'll just take it a little at a time. The Prednisone ends Monday morning. The next Cimzia dose is due Thursday. I am praying for continued direction and working on confidence to keep following doctor's orders to be the healthiest I can be.
Of course, that could also have something to do with my hesitancy to swallow anything more fibrous than a piece of white bread or banana. Mostly, I've been sticking to full liquids -- instant breakfast, butternut squash soup, frozen lemonade, frozen yogurt shakes -- and squishy stuff -- hard-boiled eggs, potato salad (sans celery and onions), rice, noodles and such. Yesterday I got really daring and ate a hamburger, which I chewed the heck out of. It tasted good, though, and it didn't give me grief later. It's so hard to tell whether I feel better because I'm not running bulky food through my system or because of the steroids.
Probably both, of course. Before I started this course of Prednisone at the first of the month, nausea and pain were nearly constant. Right now, not so much.
Of course, there could still be a stricture of sorts that I don't know about. But for now, it's not bothering me. I fantasize that if I just never eat raw vegetables, whole grains, anything with a peeling or that requires a lot of chewing again, I'll be fine. I can live without those things, right? Maybe I have to. We'll see.
For now, I'll just take it a little at a time. The Prednisone ends Monday morning. The next Cimzia dose is due Thursday. I am praying for continued direction and working on confidence to keep following doctor's orders to be the healthiest I can be.
Saturday, July 2, 2011
OK. No raw veggies (blended or not) for a while.
In fact, no solid food since Friday at noon, when some vegetable soup led to pain and an overwhelming exhaustion. I sent an email to my boss a little after 3 telling her I had to stop for the day. I went to bed and stayed there, ice on my tummy. The Lortab didn't help much.
In addition to pain and exhaustion -- nothing, which is really not that good. I've been there before. It sometimes means an obstruction that could land me in a hospital. Yuck! And once I get to the hospital, they hold me hostage and drip steroids into my veins while I pace the halls for three days until the blockage resolves. Something I would rather avoid. To say nothing (but I will anyway) about how much more the hospital costs. A tapered run of Prednisone pills costs less than $3. Three days in the hospital with an IV can cost almost $20,000.
Which makes more sense to you?
Then there's always the chance it won't resolve if I wait too long to get help. Then it could mean surgery. No thanks.
When I realized where I was headed I called my GI doc to see if he would prescribe a short, tapered run of Prednisone to compliment a liquid diet to nip it in the bud. Unfortunately, it was the Friday before the 4th-of-July weekend. None of the doctors were in the office, and mine was out of town. Good for him. Bad for me.
When the medical assistant called me back, she told me that the doctor on call couldn't prescribe Prednisone for me, since he isn't familiar with my history. Understandable, but disappointing. He said I needed an office visit, or if the symptoms got "really bad" (I wouldn't have called if they weren't) I should go to a hospital emergency room.
Hooray. Just what I wanted to hear.
When the GI specialists couldn't help me, I left a message at my primary-care physician's office. Thankfully, the medical assistant called me at about 6 p.m. to tell me she'd called in a Prednisone prescription from my doctor.
Hooray! (This time I mean it!)
Prednisone has its drawbacks when used long-term -- insomnia, weight gain, false hunger, "moon face", facial hair. But sometimes it's just the ticket short-term to prevent an emergency, quickly quelling inflammation.
I took the first dose last night. After the second dose this morning, the Lortab can handle the pain and things are moving a little. Crisis averted, I hope. I'll try something solid for lunch, pray, stay hydrated and see what happens.
Fingers crossed!
Thanks for reading,
- Beth
In fact, no solid food since Friday at noon, when some vegetable soup led to pain and an overwhelming exhaustion. I sent an email to my boss a little after 3 telling her I had to stop for the day. I went to bed and stayed there, ice on my tummy. The Lortab didn't help much.
In addition to pain and exhaustion -- nothing, which is really not that good. I've been there before. It sometimes means an obstruction that could land me in a hospital. Yuck! And once I get to the hospital, they hold me hostage and drip steroids into my veins while I pace the halls for three days until the blockage resolves. Something I would rather avoid. To say nothing (but I will anyway) about how much more the hospital costs. A tapered run of Prednisone pills costs less than $3. Three days in the hospital with an IV can cost almost $20,000.
Which makes more sense to you?
Then there's always the chance it won't resolve if I wait too long to get help. Then it could mean surgery. No thanks.
When I realized where I was headed I called my GI doc to see if he would prescribe a short, tapered run of Prednisone to compliment a liquid diet to nip it in the bud. Unfortunately, it was the Friday before the 4th-of-July weekend. None of the doctors were in the office, and mine was out of town. Good for him. Bad for me.
When the medical assistant called me back, she told me that the doctor on call couldn't prescribe Prednisone for me, since he isn't familiar with my history. Understandable, but disappointing. He said I needed an office visit, or if the symptoms got "really bad" (I wouldn't have called if they weren't) I should go to a hospital emergency room.
Hooray. Just what I wanted to hear.
When the GI specialists couldn't help me, I left a message at my primary-care physician's office. Thankfully, the medical assistant called me at about 6 p.m. to tell me she'd called in a Prednisone prescription from my doctor.
Hooray! (This time I mean it!)
Prednisone has its drawbacks when used long-term -- insomnia, weight gain, false hunger, "moon face", facial hair. But sometimes it's just the ticket short-term to prevent an emergency, quickly quelling inflammation.
I took the first dose last night. After the second dose this morning, the Lortab can handle the pain and things are moving a little. Crisis averted, I hope. I'll try something solid for lunch, pray, stay hydrated and see what happens.
Fingers crossed!
Thanks for reading,
- Beth
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