Last Friday, the Humira finally arrived in the mail. It took a trip to the doc’s office, a new prescription, a new authorization, and an irate phone call to get it approved. And they would only approve it for one month at a time, which is fine, if not a little aggravating. Now I get to worry each month.
The bigger question is whether I’ll come out of this flare. Even my doc isn’t sure. I thought I was feeling better, but wasn’t on the increased dose long enough to make a decision, although there was that one time…
After 4 weeks or so of no treatment, Crohn’s returned with a vengeance, really smacking me down last Friday. I woke up at two in the morning with the WORST headache of my life. Not only did my head hurt, my body was on fire. Seriously, my intestines were lobbying for mutiny. If they could have crawled out of there they would have. I also have one of the spondyloarthropathies, now that’s a hell of a name, which means inflammation of the spinal column, back, etc. Once my immune system came to life so did the back pain, only it was in my neck. Jeeze, everything in me was screaming foul!
I use meditation as pain control. I dislike taking narcotics as they give me headaches and the Tramadol the doc gave me gives me headaches, too. I can’t take the anti-inflammatory drugs like Advil or Motrin as they will send me into a flare. And to top it all off, I’m allergic to aspirin. Consequently, any painkillers are limited. When I have to, I take Tramadol. It works best for tummy pain, does little for anything else.
So, this pain wakes me out of a sound sleep. I couldn’t even roll out of bed. I wanted to wake up my husband so we could go to ER, but couldn’t generate enough energy to do so. Relaxing as much as I could, I started a mantra. A mantra is something you say repeatedly. You focus on it like you would if studying a textbook, a flower, a novel. I kept saying, “If it gets bad enough I’ll go to ER.”
I have no idea why I used that mantra, except that I was half-asleep and in pain, or why it worked, except saying a mantra, and focusing on a mantra, takes your mind off everything else. Eventually, I passed into sleep and when I awoke the next morning, the pain had subsided enough for me to enjoy a beautiful day on the boat. Of course, I didn’t do much, but the sun was awesome and the lapping water just what I needed, though the following day was spent in bed. Crohn’s is a bizarre illness. It can strike out of nowhere, leave you in incredible pain, then withdraw just as quickly to a tolerable level.
I have a moderate to severe case of Crohn’s, and haven’t been in remission in eight years. BUT so far, Humira has saved me from surgery. I have some narrowing so I’m careful with what I eat, but this flare seems to have attacked my stomach and small intestine instead of my large intestine. This is a new experience for me. Most of the pain is centered to the right of my belly button. Sharp stabbing pains that can make you squeal—if you had the energy.
I asked the doc about prednisone but he prefers the wait and see approach to Humira. I get that Prednisone is a yucky drug, but it does work. I’ve only lost ten pounds so he’s not on the freaking out OMg she’s gonna die Prednisone kick. I have some weight to spare. *grin*
I really wish I had good news. It sucks to say you’re still not in remission. However, because of the looonnnngggg duration of this flare, I have learned a few tricks that help with pain.
1. Distraction. This requires you to find something you love to do that doesn’t require a huge expenditure of energy. During the day, I use writing, reading, or even the games on my phone. If one thing doesn’t work, switch to another until you find something that does. Of course, it does help if you are a little obsessive about things, which writers are. I found myself doing it automatically. On Sunday, I was exhausted. I pretty much stayed in bed. Around two in the afternoon, my husband came in to check on me.
“What are you doing?”
I looked up, a cell phone in one hand, my notebook on the bed next to me, my laptop in front, and the Ipad to my left. “Working.”
“On what?”
“Ah, research?”
It was then I understood something. None of these electronic items worked fast enough to keep my mind busy and away from the pain. I would use the cell phone to check e-mail and while that was loading finish a thought on my notepad, while my laptop was loading the new website I’d just designed, as Bubble Witch waited on my Ipad for when I got bored.
That was a scary revelation. I should not be in that much pain.
When I went to work on Monday—it is a goal of mine to never miss a days’ work due to Crohn’s—I was feeling okay. Not good, not great, just okay and I realized that I have succeeded at my goal. In eight years, I have never missed a day of work due to Crohn’s except when I had sepsis. Even then, I came into work and only went to ER when I almost passed out on my desk..
The worst part is, I have been having this thought. That maybe I have done enough, lived enough, been strong enough, to be a good role model for my kids. Maybe I don’t have to try so hard anymore.
That thought scares me the most. What would happen if I just gave up, gave in, and stop fighting? What would happen to me? Who would I become? I don’t know how to be any other way. What if I said, I can’t do this anymore.
Whew!
Even I didn’t know where that was headed. Excuse me while I get back on track.
2. The old bathtub. I knew a hot bath could relax your muscles, but no one ever taught me that a hot bath is also a pain reliever and calmer. While it isn’t often the pain goes completely away, I always feel better after a bath. Note to self: Do not take Kindle into the bathtub.
3. Meditate. This means different things to different people. I learned to meditate when I was in my twenties. I didn’t use it often until I learned the true definition of pain. Meditation is my lifesaver. I honestly don’t know what I would do without it. I would be in ER half the time.
4. The Hum. This is a form of meditation I use and I call it The Hum. I use this when the pain is particularly severe. It’s a hum kinda buzzing noise I make rhythmically while I breathe slowly in and out. I hum on the outflow of air. Slow intake, slow outtake with the hum. It drives my husband nuts, but he knows when I use it that the pain is bad and not to bother me.
Exhaustion is my biggest problem right now. I take liquid B12, Bs, and all the other vitamins so it’s not that. I take thyroxin for my thyroid so it’s not that. I am running a fever almost all the time, but it’s never above 99.5. So, it could be that.
On that note, I’m taking a nap. I take another dose of Humira tomorrow. Let’s hope that starts things in motion. Remission is always on the horizon. Thank God for hope.
(((hugs)))
Louann
The bigger question is whether I’ll come out of this flare. Even my doc isn’t sure. I thought I was feeling better, but wasn’t on the increased dose long enough to make a decision, although there was that one time…
After 4 weeks or so of no treatment, Crohn’s returned with a vengeance, really smacking me down last Friday. I woke up at two in the morning with the WORST headache of my life. Not only did my head hurt, my body was on fire. Seriously, my intestines were lobbying for mutiny. If they could have crawled out of there they would have. I also have one of the spondyloarthropathies, now that’s a hell of a name, which means inflammation of the spinal column, back, etc. Once my immune system came to life so did the back pain, only it was in my neck. Jeeze, everything in me was screaming foul!
I use meditation as pain control. I dislike taking narcotics as they give me headaches and the Tramadol the doc gave me gives me headaches, too. I can’t take the anti-inflammatory drugs like Advil or Motrin as they will send me into a flare. And to top it all off, I’m allergic to aspirin. Consequently, any painkillers are limited. When I have to, I take Tramadol. It works best for tummy pain, does little for anything else.
So, this pain wakes me out of a sound sleep. I couldn’t even roll out of bed. I wanted to wake up my husband so we could go to ER, but couldn’t generate enough energy to do so. Relaxing as much as I could, I started a mantra. A mantra is something you say repeatedly. You focus on it like you would if studying a textbook, a flower, a novel. I kept saying, “If it gets bad enough I’ll go to ER.”
I have no idea why I used that mantra, except that I was half-asleep and in pain, or why it worked, except saying a mantra, and focusing on a mantra, takes your mind off everything else. Eventually, I passed into sleep and when I awoke the next morning, the pain had subsided enough for me to enjoy a beautiful day on the boat. Of course, I didn’t do much, but the sun was awesome and the lapping water just what I needed, though the following day was spent in bed. Crohn’s is a bizarre illness. It can strike out of nowhere, leave you in incredible pain, then withdraw just as quickly to a tolerable level.
I have a moderate to severe case of Crohn’s, and haven’t been in remission in eight years. BUT so far, Humira has saved me from surgery. I have some narrowing so I’m careful with what I eat, but this flare seems to have attacked my stomach and small intestine instead of my large intestine. This is a new experience for me. Most of the pain is centered to the right of my belly button. Sharp stabbing pains that can make you squeal—if you had the energy.
I asked the doc about prednisone but he prefers the wait and see approach to Humira. I get that Prednisone is a yucky drug, but it does work. I’ve only lost ten pounds so he’s not on the freaking out OMg she’s gonna die Prednisone kick. I have some weight to spare. *grin*
I really wish I had good news. It sucks to say you’re still not in remission. However, because of the looonnnngggg duration of this flare, I have learned a few tricks that help with pain.
1. Distraction. This requires you to find something you love to do that doesn’t require a huge expenditure of energy. During the day, I use writing, reading, or even the games on my phone. If one thing doesn’t work, switch to another until you find something that does. Of course, it does help if you are a little obsessive about things, which writers are. I found myself doing it automatically. On Sunday, I was exhausted. I pretty much stayed in bed. Around two in the afternoon, my husband came in to check on me.
“What are you doing?”
I looked up, a cell phone in one hand, my notebook on the bed next to me, my laptop in front, and the Ipad to my left. “Working.”
“On what?”
“Ah, research?”
It was then I understood something. None of these electronic items worked fast enough to keep my mind busy and away from the pain. I would use the cell phone to check e-mail and while that was loading finish a thought on my notepad, while my laptop was loading the new website I’d just designed, as Bubble Witch waited on my Ipad for when I got bored.
That was a scary revelation. I should not be in that much pain.
When I went to work on Monday—it is a goal of mine to never miss a days’ work due to Crohn’s—I was feeling okay. Not good, not great, just okay and I realized that I have succeeded at my goal. In eight years, I have never missed a day of work due to Crohn’s except when I had sepsis. Even then, I came into work and only went to ER when I almost passed out on my desk..
The worst part is, I have been having this thought. That maybe I have done enough, lived enough, been strong enough, to be a good role model for my kids. Maybe I don’t have to try so hard anymore.
That thought scares me the most. What would happen if I just gave up, gave in, and stop fighting? What would happen to me? Who would I become? I don’t know how to be any other way. What if I said, I can’t do this anymore.
Whew!
Even I didn’t know where that was headed. Excuse me while I get back on track.
2. The old bathtub. I knew a hot bath could relax your muscles, but no one ever taught me that a hot bath is also a pain reliever and calmer. While it isn’t often the pain goes completely away, I always feel better after a bath. Note to self: Do not take Kindle into the bathtub.
3. Meditate. This means different things to different people. I learned to meditate when I was in my twenties. I didn’t use it often until I learned the true definition of pain. Meditation is my lifesaver. I honestly don’t know what I would do without it. I would be in ER half the time.
4. The Hum. This is a form of meditation I use and I call it The Hum. I use this when the pain is particularly severe. It’s a hum kinda buzzing noise I make rhythmically while I breathe slowly in and out. I hum on the outflow of air. Slow intake, slow outtake with the hum. It drives my husband nuts, but he knows when I use it that the pain is bad and not to bother me.
Exhaustion is my biggest problem right now. I take liquid B12, Bs, and all the other vitamins so it’s not that. I take thyroxin for my thyroid so it’s not that. I am running a fever almost all the time, but it’s never above 99.5. So, it could be that.
On that note, I’m taking a nap. I take another dose of Humira tomorrow. Let’s hope that starts things in motion. Remission is always on the horizon. Thank God for hope.
(((hugs)))
Louann
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