Monday, May 30, 2011

Toward a Diagnosis

I know some of you have been waiting and wondering about the results of Vance's doctor's appointment last week. I am sorry it's taken me so long to update. Things are just busy around here, and it's hard for me to get more than a minute or two together that aren't already spoken for by someone or something.

We went to see an Infectious Disease specialist at USF on Thursday. Unlike Vance's other doctor appointments, we felt like this one was actually helpful. The good news is that Vance does not have a life-threatening diseases. He doesn't have hepatitus or cancer. His blood tests have come back beautifully, ruling out autoimmune disease, adrenal failure, and other possible infections. The doctor also said that he's sure Vance does NOT have CMV.

So we're left with ... chronic fatigue. They don't really know what causes it, don't have a cure, and can't really treat it. It can last anywhere from a few months to the rest of your life. It can be mild, severe, or debilitating. As best I understand it, CFS seems to be the result of an immune system that just won't shut off. His body is running in overdrive all the time. Basically, the doctor told us that there was no one he could refer us to, and nothing traditional allopathic medicine could do for us. He told us to check out homeopathic medicine and dietary changes, and gave us the name of a doctor who uses some alternative treatment methods for CFS and Lyme disease.

In many, many ways, we've felt very relieved after Vance's appointment. It is, of course, unnerving that chronic fatigue doesn't have a cure or even a standard trajectory. The internet is my enemy here, since it is the outlet for the embittered and malcontents of the medical world. Start searching for information on chronic fatigue and it's all too easy to envision the future with Vance in a semi-vegetative state for the rest of his life.

I was initially feeling overwhelmed and discouraged as we drove home. I kept wondering, "What are we going to do if this doesn't go away?" But that evening, I was overwhelmed with a sense of peace and faith about all of this. We are back to where we were before Vance's "diagnosis": waiting for God to raise him up. I am content to be in that place. I believe that God will heal him, and while we will do everything we can to help him recover, we are ultimately and finally dependent on him to come.

So where do we go from here? We're still working that out. I'm going to be putting Vance on the GAPS diet first. It's often been used to help children with autism, adhd, and developmental delays, but it's a diet that has been helpful for people with UC, Chron's, IBS, autoimmune issues, Lyme's disease, and chronic fatigue. The purpose of the diet is to heal and reduce stress on the digestive system, which is closely linked to the immune system (70% of your immune system is located in your GI tract). I don't know if it will help. I know it's not going to be particularly fun in the beginning stages, but at this point I would spoon-feed Vance an elephant if I thought it would make a difference.

After that, who knows? Researching alternative treatments for CFS feels a bit like walking into a crowded room and shouting, "Who wants my money!?" Everyone has a corner on this market, and it's very difficult to know who is really able to help and who is a quack. And many of you know that my very intelligent, very scientific husband likes treatment backed by scholarly research and peer-reviewed journal articles.

The past two weeks have been particularly difficult, but I have been overwhelmed with blessings in the last four days. Vance has been feeling a good bit better, we had a good friend visit from MN, our friend Dave took Isaac and Claire out for a wonderful 4.5 hours on Saturday (and came back with flowers for me and Gatorade for Vance :), another friend sent us dinner on Sunday, and Dave came back today to mow our lawn and blow the leaves off our roof (thank you, thank you, Dave!). Someone prayed for us last week that the kids would be obedient and peaceful during this time--they've been playing dog and master since Friday for hours and hours. God is taking care of us, and we are beyond blessed.

Thursday, May 19, 2011

Blood Tests and Other Mysteries

I'm overdue for giving you all a Vance update, so here it is. I probably shouldn't be writing about this when I'm exhausted (like now), but c'est la vie.

Vance's second blood test came back positive for CMV. Blood tests can have false positives, but with two positive tests, I think it's safe to assume he's still fighting off cytomegalovirus. The blood was drawn almost a month ago at this point, and he's no better than he was in February. This week has been somewhat worse. Case in point: I had a (pretty tasty) black & blueberry pie on the counter, and he skipped it to go to bed last night. You know it's bad when your man doesn't want pie.

He has made an appointment to see an infectious disease specialist next Thursday, and we're assembling a battery of questions for said expert. In the meantime, the words "chronic fatigue syndrome" are being batted around occasionally here. It's always dangerous to self-diagnose with the help of the Internet, but he does have many of the symptoms. Since some people think chronic fatigue can be caused by a Candida overgrowth, I'm looking at putting him on the GAPS diet. It's strict, but if it would get him better, I'm totally game.

We're kind of settling in to a new routine with this illness...the kids are (a little) more understanding of Daddy's need to be in bed, and they don't swarm him as constantly as before. My martyr complex is definitely getting a beat down through all this, for which I'm grateful. Even so, managing our household is pretty solidly a 2-man operation, and I feel pretty wiped out by the end of the day. Lots of moms do this all the's just that I've been spoiled for so long. But I'm getting a little tougher. I think :)

We're more aware than ever that God is the only one who can rescue--both right now and on the last day. He has always been faithful to us, and I see so much good he's working through these past months. Really, truly. But I'm ready for him to say "done!" Until that time, we'll pray for the faith to keep trusting.

Wednesday, May 18, 2011

Ana Maria Island

Isaac has been begging for a beach trip for weeks now; last weekend Vance felt well enough to go, so we piled in the van for a lovely evening on the sand. I think we determined that it was Evie's 4th beach trip. It was the first time the water was warm enough for her to experience. She loved it! I hadn't planned on it being warm enough to swim, but the lack of proper attire didn't seem to bother her.

Isaac and Claire made some new friends, and were hard at work building walls and moats and such.

It was a beautiful evening.

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