Hello, hello! Again, it's been awhile!
So... I left off last Saturday, when I was feeling awful! The nausea started to go away a few days later, and the pain FINALLY got under control on Tuesday. Praise God! I cannot express what a relief this was! It is terrible to be in a lot of pain and not be able to function at all or even think about anything else.
In doctor news, I called the Urogynecologist on Monday morning to report about the surgery and MRI I'd had, and to ask if I could have a refill of my antibiotics. The drainage has not improved, I'm still running fevers, feeling unwell, and losing weight. I reported this, and the nurse told me that they usually just treat an issue like this with two weeks of antibiotics. I explained that I hadn't seen a change, so I still wasn't any better. She told me to wait until my appointment in a week, and at that time, I could discuss it with the doctor. I asked her if there would be any bad effect of waiting another week while being off antibiotics. She told me no, but to call if I had any worse symptoms. She also asked me to have all the results of the procedure faxed over.
I had been promised by Misinformation that she would call me on Monday with the results of the culture from surgery. I didn't hear from her on Monday, but I left a message for her to please call me and also fax the MRI, op note, and culture report to the Urogynecologist. Tuesday, I called again, and received a call back around 4:30. She told me that she had faxed the MRI report over. I asked, "Can you please also send the op note and the culture report?" "What op note?" "The one from my surgery last Tuesday." "Oh, okay. Hang on a minute." And I waited on hold.
"OK, got the op note!"
"Great, thanks! Did you also send the culture report?"
"What culture report?" Then I'd go back on hold for another 5 minutes. She couldn't find the culture report, so she'd come back on for a few minutes, ask me a few questions, then put me back on hold, then she hung up on me, then I called back, then finally realized that it was done at the hospital from my surgery, not in the office. "OK, I found it! I'll fax it over! Bye!"
"Hold on, please!!! What does it say? Is it positive??"
"Uh, hang on."
Back on hold.
"OK, Hannah, it did show something."
"Do I need to be on more antibiotics?"
"I don't know, I'd have to ask someone. I'll give you a call tomorrow sometime."
I told her that was unacceptable; she was supposed to call me on Monday with those results, and I was out of antibiotics as of that evening.
"I didn't even know you HAD a culture done!"
"Well...yes, you did. You called me on Friday to tell me that it wasn't back yet, so you promised to call me first thing on Monday with the results. This should have been taken care of yesterday. We can't undo that, but I need this taken care of today."
After I basically politely called her a liar, she became more helpful. She refilled my prescription for antibiotics (she said it was a 14 day supply with a refill, but she called in a 20 day supply with no refills, leaving me to wonder how long I should actually take it). At the end of the conversation, she said, "So, are you, like, sick or something?"
"Yes! I'm running fevers, hurting all over, feeling terrible..."
"Do you still have the drainage?"
"Yes, it's still the same."
"Oh my gosh, that's awful... you should be on antibiotics or something!"
Unfortunately, by Thursday, the pain was making a comeback. I was very sad about this. The pain has gone nuts again, and I am usually feeling either miserable or stoned (or both!). I am choosing to be glad about this - Dr. Pain and I were trying out a double-dose of my nerve pain med. These worse days confirm that it isn't helping, so now I can begin tapering off this medication over the next several weeks! It will be 12 fewer pills/day!
On Thursday, I realized that I wasn't getting any better and probably needed a stronger antibiotic, so I called the surgeon's office. They put me through to Misinformation's voicemail. I called them back and told them that I was very sick and needed to speak to a real, live person. They put me through to another nurse. I ended up going in to the office and I saw Dr. Saturday's partner. He had taken care of me when I was in the hospital after my butt-coring surgery last June, and he saw me in the office a time or two, so I figured he would remember me. He didn't seem to recall any of my history - I thought that a girl with a huge scoop taken out of her backside would stand out in one's memory, but apparently it's just a ho-hum, run-of-the-mill type thing to Colorectal surgeons! He told me that I didn't have an infection - the culture just grew out normal bacteria that we all have in our bodies. He said that my pain and feeling yucky are because I have adrenal insufficiency - he thinks I need more steroids because I'm fighting an infection (I don't... I'm also on Prednisone, I've been on stress-dose steroids since the surgery, and we've also had to increase my baseline dose by 50% since January). He also changed my antibiotic for something stronger to fight the infection. So I don't have an infection, but I need more steroids and stronger antibiotics to fight the infection I don't have? I was confused, but I think that the bottom line is that I DO have an infection in my pelvis. My other abscesses didn't grow anything but normal bacteria, but they were definitely infections. Hopefully this new antibiotic will kill the infection!
As I was leaving the office, the Urogynecologist's office called and said, "Since you're feeling so much better on the antibiotic, the doctor decided that we can renew it for you! Which pharmacy shall we send it to?" I was so confused. I had called them on Monday, telling them I wasn't better and wanted a refill, and they said no. I told them I was just leaving my surgeon's office, and he gave me another antibiotic since I'm not feeling better. She said, "Well, you need to decide who's going to treat you - US or THEM!" I told her that I didn't care; I just want to get better, and when I called them to say I wasn't getting better, they told me to wait a week to see the doctor. I called my surgeon's office and they saw me right away. She apologized profusely that she had misinterpreted our conversation from Monday to mean that I was feeling better (not sure where she got that from!). I asked if I should stop following up with them, but she said to keep Monday's appointment.
I honestly don't care who treats me - the surgeon or the Urogyn doctor - I just want to be taken care of and to get better. There have been some pretty major failures from both offices this week that are very disappointing to me. Thankfully, my trust and hope is NOT in doctors (or their staff). They are simply human. My hope is in the Lord! He is my constant strength and shield.