Monday, September 10, 2012

Surgeon, Pain, & Steroid Updates

What is going on in there?
Thankfully, the CT scan didn't show any major issues - no abscesses! Yay!!!! Dr. Saturday did confirm that the pelvic pain and other symptoms I continue to experience are abnormal and concerning... but despite repeated testing, cultures, exams, empirical treatment with antibiotics and antifungal and anti everything meds, and even open abdominal surgery, Dr. Saturday, Dr. Professor, and the Urogyn Dr have all come up empty as far as a definite cause of or resolution for my symptoms. Dr. Saturday said he just has no idea where to go from here, but at least there isn't something that dramatically needs fixing, as far as they can see. A bit disquieting for all involved, but I guess that's medicine, sometimes.

What were VSL#1 and #2??
My tummy stayed rather upset for several days following the CT... I guess my system is just really incredibly hypersensitive to the contrast or something! Silly tummy. Also, since my surgery, I've been having to get up at night to empty my bag 2-4 times per night. I used to rarely get up at all, so this was quite a change. I thought this was due to losing a few more inches of intestine during my surgery, but Dr. Saturday thought this is more likely due to all the antibiotics and antifungal medication I was on this spring and summer. Since I'm having an upset tummy plus the nighttime issues, he wants me to do a course of the infamous VSL3 probiotics for a few weeks. 

Dr. Saturday ready for action
The weird growth in the wound around Squirt has returned. It's a finger-like projection just to the side of Squirt - it almost looks like a little tiny baby stoma. Dr. Saturday was very interested in and befuddled by the anomaly. He said it could be IBD on the skin, or an allergic reaction to whatever kind of stitch he used there, exacerbated by my body's autoimmune inflammatory reaction to... basically everything. Since it won't go away, and since he doesn't know what it is, he wants to follow the surgeon's mantra ("when in doubt, cut it out"). So... I'm having a little surgery in about 10 days. He wants to excise the little "finger" and surrounding wound area, and he will either stitch the area shut or let it heal from the inside out (words that send an involuntary chill down my spine - you may recall I had a surgery that was left to heal from the inside out, which resulted in 80 days on a WoundVAC and 9 months of an open wound). Thankfully, he told me that he could do this procedure in the office if I wasn't too squeamish. I'd do just about anything to avoid going to the hospital and getting put under, so I was glad to hear that.

I saw Jack Black (Dr. Pain) on Friday. It was a GOOD visit - honestly, my pain is the best controlled it's been since I started needing to see a pain doctor. Words are inadequate to express my gratitude and thankfulness for this! It is unbelievably good and happy to NOT be constantly trying to push down this ever-gnawing pain that's a hair's breadth away from breaking loose and becoming uncontrollable. Since spring of 2010, I've needed medicine to help me fall asleep and stay asleep through the pain. In the past weeks, I've been able to come completely off of this medication and have rarely woken from pain. I received the green light to start tapering off another anti-depressant pain med I've been on for several months - I don't really feel like it's done a thing for me, and I'm all about cutting unnecessary meds! Once I'm completely off of this med (which will take 6+ weeks), I also got permission to experiment with tapering to a lower dose on another scheduled pain medicine. I am very excited that God is causing my pain to decrease, and that I'm able to try to get off some more meds!

I love Google images! So random.
JP Dr, my rheumatologist, had me experiment with my steroids last week. I went up to double my normal dosage for three days, went to 1.5x normal for 3 days, then back to normal. Sure enough, I felt like a different person after a few days on the higher dosage. Instead of being unable to sit up for more than a few minutes due to dizziness, I could stand up and have a conversation! Instead of 15-16 hours of sleep, I could get by with 12 (Okay, I know that's still quite a lot of sleep, but hey, it's improvement)! The tremors in my hands, intense salt cravings, and sensation of racing heart decreased quite dramatically. It was great, and I enjoyed some of the best days I've had in weeks!

On the first day of being back on my normal dose, I noticed I was really shaky, and the following day was even worse. Since going up on the steroids helped, JP Dr decided that I should go back up to the double dosage again for a few weeks, then try to taper down again, but v-e-r-y slowly. She said she was very concerned with how I looked the last time I saw her (I may or may not have almost passed out in her office...). She said she's not sure if it's because of my adrenal issues, my POTS/dysautonomia issues, or an autoimmune flare-up (or a combination of all these things), but it's clear to her that I do need more steroids right now. So back up I go.

My feelings go back and forth... sometimes I'm frustrated and sad that I still spend most of my days in bed, that many days I lack the stamina to get dressed, much less leave the house or work a full-time job. Other times, I feel such excitement and happiness over improvements I see in my health - much less pain, or a day when I have more energy than usual and can get up and accomplish small tasks. It's just a reminder to me that contentment and joy are NOT factors of circumstances. They are a choice, an attitude. Through Christ, it's possible to be content in the most impossible situation (Philippians 4:10-13). I can't allow my emotions or my circumstances to dictate how I act or think or talk to others; rather, I must allow the love of Christ to control me. 

Hannah ;)

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