Ode to Innards
Respect your innards. It's not fun when they are mad at you.
Back in the spring, I had upper abdominal pain. It was uncomfortable, but not unbearable. I starting seeing a gastrointerologist, got an EGD done (they knock you out and stick a camera down your throat to take pictures of your insides), a CT, and all came back clean. Whew, thank you Lord. And the pain went away. And we all decided that it was serositis, a symptom of lupus, and well in line with everything else that had been going on.
Well, about a month ago, the pain came back. Thankfully, the pain meds I am on helped significantly and it wasn't that bad. But last week, it started getting a lot worse and the pain meds weren't cutting it.
I got my third Benlysta infusion on Thursday along with an appointment with my rheumo doc and he decided to add an IV of steroids to see if it would calm down the inflammation in the lining around my organs (the serositis - the cause of the abdominal pain). So my infusion took about 4 hours on Thursday - my friend Irma was a trooper to hang out in the waiting room for so long, thanks Irma!
On Friday morning, I was feeling worse and also feeling more side effects from the Benlysta. My rheumo doc called to check on me and I reported that the pain was the same. He had me come in for a second IV of the steroids in hopes that it would do the trick. Unfortunately, it didn't. The pain worsened over the weekend and I called him on Sunday to determine what I should do. Since the two IVs of steroids hadn't done anything, he didn't think the issue was inflammation, but something else, so he told me to go back to my GI doc and see what he thought. I called my GI doc that evening and left a message and popped some of the stronger pain meds (per my doctor's directions) I have in my ever-growing collection of pharmacopeia.
God was so good to allow my GI doc to work me in first thing Monday morning and after some questions and abdomen-poking, he deemed that another EGD was needed to see what had changed. So, dark and early Wednesday morning (literally, it was before 6am) my sweet friend Amanda picked me up and took me to the endoscopy center.
An hour and a half later, the GI doc was standing at my bedside as I blinked sleepily at him and told me that there were a lot of changes to my EGD - there is erosion at the juncture at the top of my stomach, a lot of inflammation, and (this is gross) food still in my stomach that shouldn't be there after fasting 8 hours. He said my stomach hadn't contracted the entire time he had been doing the scope, which isn't a good thing, it means my stomach isn't processing food correctly. This made a lot of sense because for several weeks now, the foods that I have been craving have been fruits and smoothies - things that are easily digestible. I find it incredible how the brain can signal the body to crave only what it can process - mind blown - but I'm digressing...I got to see pictures of my insides again and compare them to the pictures the GI doc took last time and the changes are pretty drastic - so I was relieved to know that I am NOT crazy for hurting so badly, there is a reason for all the pain.
So for now, I have to continue taking my pain meds until we can figure out what's causing these problems. I've got some scans and tests coming up that will hopefully pinpoint the issue. The pain meds make me very drowsy and fuzzyheaded, so I'm home from work until I can get off of them. My days are consisting of a lot of laying around and sleeping - since it hurts to move much. I am not a fan of narcotics but right now, I am grateful for them. And I'm so thankful for the wonderful friends that I have that have been taking care of me, and that my mom had planned a visit for this past weekend before things got worse and so she was here to help me out for a few days as well, which as you all know, nothing beats having your Mommy around when you don't feel well :).
So, respect your innards folks :)
Well, about a month ago, the pain came back. Thankfully, the pain meds I am on helped significantly and it wasn't that bad. But last week, it started getting a lot worse and the pain meds weren't cutting it.
I got my third Benlysta infusion on Thursday along with an appointment with my rheumo doc and he decided to add an IV of steroids to see if it would calm down the inflammation in the lining around my organs (the serositis - the cause of the abdominal pain). So my infusion took about 4 hours on Thursday - my friend Irma was a trooper to hang out in the waiting room for so long, thanks Irma!
On Friday morning, I was feeling worse and also feeling more side effects from the Benlysta. My rheumo doc called to check on me and I reported that the pain was the same. He had me come in for a second IV of the steroids in hopes that it would do the trick. Unfortunately, it didn't. The pain worsened over the weekend and I called him on Sunday to determine what I should do. Since the two IVs of steroids hadn't done anything, he didn't think the issue was inflammation, but something else, so he told me to go back to my GI doc and see what he thought. I called my GI doc that evening and left a message and popped some of the stronger pain meds (per my doctor's directions) I have in my ever-growing collection of pharmacopeia.
God was so good to allow my GI doc to work me in first thing Monday morning and after some questions and abdomen-poking, he deemed that another EGD was needed to see what had changed. So, dark and early Wednesday morning (literally, it was before 6am) my sweet friend Amanda picked me up and took me to the endoscopy center.
An hour and a half later, the GI doc was standing at my bedside as I blinked sleepily at him and told me that there were a lot of changes to my EGD - there is erosion at the juncture at the top of my stomach, a lot of inflammation, and (this is gross) food still in my stomach that shouldn't be there after fasting 8 hours. He said my stomach hadn't contracted the entire time he had been doing the scope, which isn't a good thing, it means my stomach isn't processing food correctly. This made a lot of sense because for several weeks now, the foods that I have been craving have been fruits and smoothies - things that are easily digestible. I find it incredible how the brain can signal the body to crave only what it can process - mind blown - but I'm digressing...I got to see pictures of my insides again and compare them to the pictures the GI doc took last time and the changes are pretty drastic - so I was relieved to know that I am NOT crazy for hurting so badly, there is a reason for all the pain.
So for now, I have to continue taking my pain meds until we can figure out what's causing these problems. I've got some scans and tests coming up that will hopefully pinpoint the issue. The pain meds make me very drowsy and fuzzyheaded, so I'm home from work until I can get off of them. My days are consisting of a lot of laying around and sleeping - since it hurts to move much. I am not a fan of narcotics but right now, I am grateful for them. And I'm so thankful for the wonderful friends that I have that have been taking care of me, and that my mom had planned a visit for this past weekend before things got worse and so she was here to help me out for a few days as well, which as you all know, nothing beats having your Mommy around when you don't feel well :).
So, respect your innards folks :)
1 comment:
I salute you ma'am and will heed the word! :)
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