I had a rough couple of days this month. My
pain had been shooting through the roof! I was concerned that the
ulcers had multiplied like mice, so I made my doctor do yet another
scope.
Pre-scope - Hospital garb+IV (super excited) |
On the flip side, when I woke up from my procedure, groggy, I did and said equally nonsensical things.
GOOD NEWS!
Surprisingly, there was good news
involved! There was not an ulcer in sight! Not one! That means that
Humira is working! Because the medicine is doing its job, my small
intestines are healing up, instead of making holes in themselves.
Yay!
WHAT'S THE DEAL?
So what's the catch? Well hello, if not ulcers, then what the heck is causing my awful pain??? The suggestion: post-surgical pain. What does that
mean?? Well I guess if I think about it, I had a lot of nerves sliced through for surgery. I have scar tissue on the outside of my stomach,
and I guess it would make sense to have some “issue tissue”on the inside as well. Who knows? All I know is my butt hurts and it hinders. It keeps me
locked inside my home at night and it wrecks any ambition. And it makes come off as "flaky" to those I make commitments with.
FIX ME
An obvious question would be: can I get medicine for it? Well for what? What are we treating?? “Post surgical pain” is such a broad category! I'm currently taking a drug that can help with nerve pain, but it mostly just makes me sleepy. At least I'm sleeping awesome! I wonder if there is anyone else out there who experiences this same pain?? Eh, J-pouch'ers?? Its like the inner muscles get sore when I use them. Ugh, miserable.
FIX ME
An obvious question would be: can I get medicine for it? Well for what? What are we treating?? “Post surgical pain” is such a broad category! I'm currently taking a drug that can help with nerve pain, but it mostly just makes me sleepy. At least I'm sleeping awesome! I wonder if there is anyone else out there who experiences this same pain?? Eh, J-pouch'ers?? Its like the inner muscles get sore when I use them. Ugh, miserable.
LET'S TRADE PLACES
I hate being hindered. I want so badly to be that good, reliable employee, but the odds are stacked. On my worst days I must decide to push through inexplicable pain and go to work, but some days its hard to pry myself off my couch. Other times it's easier to lie to myself than to tell the truth to those who can't understand what I live with. I want to trade places just for one day with those who don't get what I've been dealt. These people would be bosses who view absences as laziness. And friends that are fading into the background because I'm less able to be adventuresome lately.
EYES FIXED ABOVE
Granted there are seasons with chronic illness. Things aren't always completely unbearable, but its not always an easy task to pretend I'm fine either. A constant physical burden gets a person down. It can become difficult to stay positive. Yet I fight against this despair. I must keep my gaze fixed "on things above" and not on my circumstances. I look to Christ for strength to get me through and on the worst days, He carries me.
I ROLLED THE DICE
I took a chance with surgery. I signed legal documents that basically said there were no promises of being any better off than before. I warmly welcomed an unknown outcome because of what I was currently facing prior to surgery. My body was destroying itself. What I live with now is a daily battle of a different type. I guess this is a reminder that there are no guarantees with surgery, heck with life in general. I get that, really I do.
FORWARD -->
Ultimately healing takes time. More time than expected. A lot more time that I have the patience for. I admit I often forget how big of a deal those surgeries I endured were. So despite current troubles, I look forward--> I await the day when I can live unhindered. --> When my coming's and going's aren't limited by pain. -->I anticipate brighter days when I am not held back by this pain in the butt any longer. --> I'm waiting for the day when I can spin in circles, dancing and singing in victory,
I ROLLED THE DICE
I took a chance with surgery. I signed legal documents that basically said there were no promises of being any better off than before. I warmly welcomed an unknown outcome because of what I was currently facing prior to surgery. My body was destroying itself. What I live with now is a daily battle of a different type. I guess this is a reminder that there are no guarantees with surgery, heck with life in general. I get that, really I do.
FORWARD -->
Ultimately healing takes time. More time than expected. A lot more time that I have the patience for. I admit I often forget how big of a deal those surgeries I endured were. So despite current troubles, I look forward--> I await the day when I can live unhindered. --> When my coming's and going's aren't limited by pain. -->I anticipate brighter days when I am not held back by this pain in the butt any longer. --> I'm waiting for the day when I can spin in circles, dancing and singing in victory,
"Now that you're on fire, your voice is like the wind.
Now that you're on fire, let life begin again.
Now that you're on fire, a new day has begun.
Now that you're on fire, you are like the sun."
"You're old enough to know it's not your fault
You're strong enough to face your darkest conflict
Now you've woken from your nightmare, and now you're fighting back
And nothing can survive when you attack
This road to healing, hurts more than anything..."
Now you've woken from your nightmare, and now you're fighting back
And nothing can survive when you attack
This road to healing, hurts more than anything..."
I aim to forget what is behind and strain toward what is ahead, hand in hand with my Savior through it all.
Same thing happened to me. In 1987 I got married and was awaiting the first stage of j pouch for UC. Histology revealed Crohn's. You could have knocked me over with a feather.
ReplyDeleteI lived with ileorectal anastomosis since then until last sept when I finally opted for permanent ileostomy.
I wonder how you are managing with a j pouch because it's not really deemed appropriate here in uk for Crohn's. I can vouch for that because I spent all those years between 1987 and 2013 holding my butt closed!
I too have a wonderful supportive husband and was also blessed with two children (quite a miracle since the surgeon and consultant said I wouldn't have kids).
I'm a Christian too and I will say some prayers for you.
I know what you are going through and it isn't easy for someone so young to struggle with energy levels etc.
my current issues are hydration mainly and I wonder how long that's been an issue because we didn't have the internet in the days after I had my surgery and I haven't had any support with my condition until recently.
May God bless you darlin, with love, health and the right people around you.
Debs x
I was diagnosed as HEPATITIS B carrier in 2013 with fibrosis of the
ReplyDeleteliver already present. I started on antiviral medications which
reduced the viral load initially. After a couple of years the virus
became resistant. I started on HEPATITIS B Herbal treatment from
ULTIMATE LIFE CLINIC (www.ultimatelifeclinic.com) in March, 2020. Their
treatment totally reversed the virus. I did another blood test after
the 6 months long treatment and tested negative to the virus. Amazing
treatment! This treatment is a breakthrough for all HBV carriers.