Hi Friends!
Today's blog is all about a weird "Flare-Up" I had a few weeks ago.
It was really scary and I am honestly not convinced it was a flare. I've noticed if your doctor is not sure what it is and it goes away they call it a flare.
If you have read my other posts you know that I was recently diagnosed with Autoimmune Hepatitis (AIH) an autoimmune disease in my liver.
In April, I started treatments for AIH. I am not continuing them at the moment.
On Wednesday, April 22nd I started Azothioprine and Budesonide. They made me nauseous but that was it. Because quarantine and safer at home were in full effect, the threat of going outside was scarier but more abstract since I didn't leave my home at all. Even still I haven't been inside of a store for multiple months.
Azathioprine and Budesonide would weaken my ability to fight off viruses and cause me to have a compromised immune system. It is an immunosuppressant. (It suppresses your immune system)
In April, I started treatments for AIH. I am not continuing them at the moment.
On Wednesday, April 22nd I started Azothioprine and Budesonide. They made me nauseous but that was it. Because quarantine and safer at home were in full effect, the threat of going outside was scarier but more abstract since I didn't leave my home at all. Even still I haven't been inside of a store for multiple months.
Azathioprine and Budesonide would weaken my ability to fight off viruses and cause me to have a compromised immune system. It is an immunosuppressant. (It suppresses your immune system)
So I really had to stay inside.
On Sunday, April 26th, I woke up with horrible pain in my feet. They were double their usual size and they hurt so much that I could not stand, sit, or walk. I got up to use the restroom and it felt as if whatever liquid was in my feet and legs was all racing to my toes. My feet were swollen and I had a hard time painfully wobbling to the restroom.
It was terrifying but I figured that it was not a big deal. I get weird pain all of the time and it usually goes away (right away).
This was completely different. It stayed for way too long.
I never take pain medicine, I am scared of it (because I have liver problems) and it usually does not help. But I really needed something. And I took an alive which is something I never do.
My foot pain grew throughout the day and just became extremely painful.
I have a high pain tolerance and this was extreme pressure from the inside. My feet burned and tingled on the outside.
My mom called my doctor and my doctor said that she found that 7% of people who take Budesonide (alternate of Prednisone with less side effects) have the side effect and it should go away. So I waited and elevated. I also stopped all medication.
On Monday morning my feet developed blisters and looked bruised on top of being huge.
They burned and hurt and I just waited.
I tried pain medicine, elevation, and sleep.
Monday night I kept waking up and couldn't sleep through the night because the pain in my feet was so bad. On Tuesday at 2:30 am I called my mom and she came to my room.
We made the decision to go to the emergency room.
This was the weirdest Emergency Room experience I have ever had.
On Sunday, April 26th, I woke up with horrible pain in my feet. They were double their usual size and they hurt so much that I could not stand, sit, or walk. I got up to use the restroom and it felt as if whatever liquid was in my feet and legs was all racing to my toes. My feet were swollen and I had a hard time painfully wobbling to the restroom.
It was terrifying but I figured that it was not a big deal. I get weird pain all of the time and it usually goes away (right away).
This was completely different. It stayed for way too long.
I never take pain medicine, I am scared of it (because I have liver problems) and it usually does not help. But I really needed something. And I took an alive which is something I never do.
My foot pain grew throughout the day and just became extremely painful.
I have a high pain tolerance and this was extreme pressure from the inside. My feet burned and tingled on the outside.
My mom called my doctor and my doctor said that she found that 7% of people who take Budesonide (alternate of Prednisone with less side effects) have the side effect and it should go away. So I waited and elevated. I also stopped all medication.
On Monday morning my feet developed blisters and looked bruised on top of being huge.
They burned and hurt and I just waited.
I tried pain medicine, elevation, and sleep.
Monday night I kept waking up and couldn't sleep through the night because the pain in my feet was so bad. On Tuesday at 2:30 am I called my mom and she came to my room.
We made the decision to go to the emergency room.
This was the weirdest Emergency Room experience I have ever had.
Because of COVID-19, the waiting room was completely empty (usually packed with hundreds of kids). Because of the foot pain, I had to sit in a wheel-chair. We walked in and they took us right away to an ER room.
My Nurse was actually really bad. I'm not sure if she was brand new or really tired but she could not put my IV in. She tried twice and had to ask a friend to finish. It hurt really bad and I was numbed. I had bruises for a while after that. I've also never had blood get all over the place when someone has taken blood work, but this looked like a murder scene. Really bad.
Side Note: With only a few days of these medications my blood work was much better and my inflammation reduced by 20 points (same as all infusions combined)!
The ER doctor came in a few hours after I came in and told me that I had a flare. She stated that the inflamed "blisters" that were on my feet were nodules. (Like pockets of inflammation) (I have these on my hands) So she prescribed Prednisone. If you don't remember I hate prednisone. It is a steroid that is supposed to decrease inflammation, but it has hundreds of side effects.
They offered for me to stay and get prednisone through the IV and they could give me pain medicine or take oral prednisone at home. I choose to go home. They did however give me a dose of Morphine because the pain really was awful.
When I got home I slept for hours and when I woke up my feet were better. Not healed but better.
It took about two weeks for my feet to heal so that I could walk and stand. They are still healing and there are dead skin stabs on my feet but they feel 1000% better.
I am so glad that it is all over. I still don't really know what happened but I don't take the medicines and my treatment plan is still being decided.
I really hope it does not happen again!
Have you had a crazy ER experience? Let me know!
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