Waiting for Labs

I have drafted about a dozen blog posts that have gone unpublished. I think it's because I've been having a midlife crisis and have felt protective of some of my budding opinions.

Yes. A midlife crisis at my age. I reckon you're allowed more than one.

Today I want to give an update about the lab tests results I'm waiting for. But first, some background...

On Christmas Eve 2014, I had endured three months of IV therapy through a PICC line in my upper left arm. My skin is so fair and sensitive on the inside of my arms that it hated adhesives and skin cleansers and not being able to breathe. By the middle of therapy, I had open, weeping sores riddling my upper, inner arm. It stung around the clock. I went to the hospital every other day to get rewrapped with a roll of sterile gauze--certainly an infection hazard because it wasn't airtight, but simply the only way to keep the PICC line in to finish my treatment. 

The minute I could get the line out that Christmas Eve, I did. I was so sick. My doctor had me rest and recover from the antibiotics and other therapies for three months. We retested my numbers in March, and my Lyme markers had more than doubled. I still felt awful. We hadn't hit it hard enough. I had my second PICC line placed right away to start a more rigorous treatment, but it went in the upper right arm. 

This time, I had a homecare pharmacy deliver my infusions and supplies so I could take care of myself at home instead of 45 minutes away. It worked wonderfully (except when I had a horrible allergic reaction to one of the new drugs--but I'm a nurse, so I handled it). I infused until summer arrived. The PICC line skin issue emerged slightly later than the first time around because we prophylactically tried a wound dressing called a Mepilex instead, but I was wrapped in gauze again before the second month ended. My poor skin. We pulled that PICC out with glee when the three months of four-days-a-week infusions were up. 

Believe it or not, we never rechecked my Lyme levels. It's a $340 test, and I thought if it was hardy enough to have survived those drugs, maybe it deserved to kill me. It couldn't be that tough, not after what I'd poured into my body. I wanted to deny its existence and move on with my life. I wanted to have my body back, be able to drive again, and to not need a wheelchair for outings. It would be all up from there, baby.  

My doctor got me started on the LDI injections and let my system recover from the second three months of IV antibiotics, and boy did I need it. I went to a GI doctor once, and she had me get a bunch of liver tests (including imaging) because it was so shot. I started to feel kind of awesome in August though; I did some house cleaning and some driving and some good mothering. It lasted about three weeks before I began to slump again. 

Thinking it may be hormonal, I hoped I would have a repeat of the good feelings and increased vitality in September. But it didn't come. Not in October or November either. I even tried to fake it. I told people I thought I was getting better, when they asked, because for awhile I believed it. 

This year (2016), it's been bugging me that I am so horrifically fatigued all of the time and just feeling worse, with new crazy symptoms like tremors and migraines and psych issues. The critters may be munching on my brain after all. 

I literally spend all day in bed except for maybe two times per month (examples: I went on a field trip with my daughter's class; we have my sister's wedding coming up; family tradition days or when people in town I drink caffeine and go). I attend church every week. I get out a few evenings a month for this and that. And other than that, I'm really at home. In bed. Trying not to bemoan my situation. 

I have had LDI injections to treat viruses as well as Lyme. The idea is that sometimes a virus (like Epstein-Barr and cytomegalovirus) can weaken your immune system and create a situation for latent bacteria, like Lyme, take over. That is one theory of what may have happened to me. My doctor has treated for viruses as she has hypothesized that my Lyme has diminished with the continued LDI injections (of which I have undergone twenty rounds!). I've agreed with her. The viruses she suspects are fatigue-causing beasts. 

Lately I have had this unsettled feeling that I needed to get blood work done. So last week, I requested it: a follow up on my Lyme numbers, a virus panel, and anything else my doctor felt necessary. I filled several tubes with blood and went home nervous as heck. 

That's how I feel every time I let my mind wander. I feel nervous. 

Possible outcomes of my lab results:

--Everything is negative, and we are left befuddled. More testing. $

--Something unimportant is positive and serves as a red herring we get to chase around. $$

--My Lyme is back with a vengeance, and I get more IV therapy in whatever form, but longer and more aggressive than last time. $$$

"See kids? This is why we can't have nice things."

If the latter is the case, I'm getting a port. A port is a little button that is implanted under the skin of your chest with an IV line that dumps into your superior vena cava, like a PICC line. You access it with an actual needle connected to tubing. The needle stays in your skin for a week at a time, but I'd wager I'll only need it up to five days a week. Swimming and showering and letting my skin breathe will be wonderful for me. I should have gotten a port the first time around, but I didn't know much about the circus I was joining back then. 

My skin can't withstand dressings. My peripheral veins can't stand the scarring. And I can't stand getting myself to an IV center when I feel like death. I can access and deaccess a port from home. It is the path of least resistance, and all signs point to DUH. 

No matter what the labs show, I am already horrified at my prospects. I don't want to be scared. But I don't have the money or energy to pour into chasing illnesses forever and ever. But also, I just want to KNOW. It's as bad as when I waited to see if I got into BYU's nursing program. Bring it!!

I feel exigence to treat myself. It's so real. I can't deny this urgency. 

Another test I'll need soon is a follow up MRI on the cyst in my brain. We just need to make sure it isn't changing. 

There is a lot more I could write about, but if I stop now, I'll be more likely to post. 

It's going to be a weird summer. I hope my kids don't get tired of sidewalk chalk and weeding the garden, because that's going to be their summer thrill this year. They are such good little people. Mom ruins everything!