Thursday, August 4, 2011

Long Update

Okay, so sorry for no updates in a while, so this may be long! I was hoping to NOT have to post bad news... alas...

I went to see Jack Black last week. It was good - I was pretty stable. That is to say, most of the time on most days, I get enough pain relief to function. This takes quite a cocktail of several strong meds, but it works. Some days, I don't need much medicine. Some days, I take up to my limit, and still hurt too bad to move. Most days are somewhere in between. This is pretty much the ideal goal we've been working towards for the past 18 months. We are thrilled to have attained functionality and a much better quality of life!

He gave me a big hug when I introduced him to Edgar. He said he can't imagine going through the wound changes. Honestly, though, I don't know if I'm just used to them now, or what, but they are becoming less painful each time. Which is great!

On Friday, I got my wound measured. Remember, last week, it didn't get at all smaller. We were stuck at something between 6 and 7 cm deep. Well, Friday, that sucker measured in at 3.9 cm!!! Praise God!! We made some changes that week - packing the wound a little differently, and I pounded down the protein 5-6 times a day, even if I felt sick and un-hungry. The doctor said it's my job to make them look good! I did my job well on Friday, much to everyone's delight.

The nurses commented that the WoundVAC would seal better if I could just avoid getting sweaty. I asked them if they had any tips for how to accomplish that during the worst heat wave ever in Texas while driving around in a car with a sub-par AC. The nurse said, "Well, I'M going to Colorado this weekend!" Hm... maybe a trip of medical necessity? ;)

I also had my one-month follow up with Dr. Saturday. I was feeling fantastic, energetic, really, just GOOD. I told him that this is the best I've felt in 3 years! He shook his head and said, "What a struggle!" It's sure been a long road getting here.

Okay, here's the bad news. Friday evening, just HOURS after my good report at the wound care clinic and surgeon's office... I started feeling bad. Feeling exactly like I felt before my surgeries - that feeling that something is not right. Feeling like I have abscesses again. I was pretty draggy all weekend. My belly just hurts and I've been getting shaky. My muscle pain is also flaring up something fierce. The good news is that my stomach is actually working - no dumping - even without meds to slow it down. I noticed this because I am getting waaay stoned on pain meds that usually don't phase me. I figure I'm actually absorbing them now, haha! ;)

I went to the normal doctor to get checked out to make sure I didn't have something "normal" like a UTI (my abscess symptoms always start with bladder pain and issues, and I had those same symptoms this weekend). I didn't. They checked my labs and felt my belly, and thankfully, nothing seems at all alarming or terribly off. I still am feeling pretty crummy. Hopefully this is just nothing... just my body being quirky, as usual...

The other news is that I will be losing Edgar at the end of next week. My current insurance (the story of how I have this insurance is a long, but it is clearly an act of God) will run out at that time. Thankfully, I was able to get some other health insurance (which is another long story, but is also clearly an act of God). The new insurance, sadly, will not shell out one penny towards the thousands of dollars that renting Edgar costs each week. Unless I am hospitalized or declared "totally disabled" in the next week (although it's not terribly too far-fetched to imagine either one of those things happening), I will lose Edgar.

This is NOT the end of the world. People have healed without WoundVACs for the past however many thousands of years. It just means that my wound will take much, much longer to close up. We were looking at many more weeks. So now it's gonna be many more months. It probably will not heal in 2011. I know that God is good and He always provides - He just doesn't always do it in the way I wanted Him to (go figure). But I tell you what, since I found out I'm losing Edgar, I sure quit complaining about being attached to a little pump all the time! He may be a bit of a pain, but he is helping my wound heal faster.

Finally... yesterday was my birthday. Last year, I got out of the hospital on the afternoon/evening of my birthday. I felt horrible. I was in a ton of pain. I was depressed. I was pooping blood multiple times an hour from my dying J pouch. I wasn't sleeping. I could hardly move because my joints were so messed up. I had just found out I definitely needed surgery to remove Twitchy the J pouch. I felt so yucky that it was all I could do to eat the sprinkles off the top of my ice cream - I didn't even have dinner. Yeah, this year was a LOT better. No, things aren't perfect. But they sure are better than last year. I am truly thankful for each day of life that God gives me!

Hannah ;)

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