Well we made it through all the holidays and birthdays at our house. We kept it simple and as stress free as possible. In fact, we just took down our tree. Everyone knows the Christmas decorations never survive past Dec 26th at my house unless something is wrong. :)
As far as my health goes, it's no better than November, maybe worse. Liver enzymes are still elevated, albeit maybe a bit less. Pancreas is holding on. Haven't had a flare up in a little while. Thyroid is still out of whack. I feel like I've gotten more and more tired and I'm slowly creeping back to the way I was before I went to Oregon. I don't know what can be done about it more than what we are doing. Adrenal fatigue is just difficult to reverse alone, much less with multiple diseases continually sapping the life out of me.
I had a flare up of Bartonella and Babesia and in Nov/Dec sometime and experienced the worst night of my life. I was only semi lucid that night and clearly remember the pain, but I don't remember that I said or did anything. I thought I suffered quietly in bed save for some uncomfortable flip flopping. Apparently, that wasn't the case. I thrashed wildly about even accidentally kicking and hitting Jim. I bolted suddenly out of bed crying out and got up an wandered the house moaning and crying out in pain. I remember taking various pain medicines, muscle relaxers, sleeping medicine, minerals and water for cramps and powerpaks over the long hours thinking something would work to calm my cramping muscles, but nothing did. I have had these cramps before, but usually minerals and water and/or a muscle relaxer calms it within an hour or two. This time it went from 10pm until 6am nonstop. It's so agonizing I could not think clearly at all and as I said, I have a partial amnesia of that night. I remember thinking it was worse than childbirth pain and funny thing was Jim said later that it reminded him of childbirth too. Too bad we didn't get a baby for it this time. :) Jim of course didn't sleep either and he read from Hebrews aloud to me and prayed the whole night for me. I think he aged a few years from worry that night.
After this episode, I went to the doctor and he surmised Bartonella and Babesia were fully active and wreaking havoc, so I began a treatment for them that will last a good portion of this year. I only hope it works this time. We have succeeded in beating the diseases back, but never have I been fully cured of it. Bartonella must be treated first because it's immunosuppressive and keeps you from successfully treating Babesiosis. Babesia is like malaria and is treated with precisely the same medication. The symptoms of Babesiosis are terrible and it's hard to endure it while we painstakingly try to gain ground on Bartonella. They cannot be treated simultaneously. I have done about 40 days of Bartonella treatment so far, In a couple more weeks we will see how things are and whether to keep on this medication or switch to treating Babesiosis.
Jim has taken on a lot of my responsibilities and the kids have had to do even more to help keep our household running. I have resigned myself to do as Jim has asked and sleep when I am tired (against my true wishes) and reserve energy by letting go things that don't matter. My house isn't as clean as I would keep it and I can't do certain things with the kids like I would prefer, but if I don't give my body a chance to heal, I won't be here at all. This isn't the life I would choose, but I am certain there is purpose in it. Obviously, God's ways are not our ways. I don't mean to sound unhappy either, because I am not.
The insurance trouble goes on. The money they paid before they stopped payment on the treatments they had pre-approved they are now requesting a refund back on. They want us to pay them back by the end of the month. The frustrating thing for me is that had they said they wouldn't cover any of my treatment in Oregon, I would not have spent that money to begin with. They claim they should not have approved it but I made decisions to get treatment because I was told 70% would come back to me and indeed it did at first. They didn't say otherwise until I had left Oregon. I have to keep reminding myself God knew this all along. Good things came from those treatments although I would not have chosen to spend so much money there. Jim and I both agree had I not gone I could very well be dead now. I have to remind myself all of this to let it go.
I am doing IV infusion treatments at home- several times a week. My vitamins and minerals are sapped fast and I can feel it when I need another bag. My body gets more twitchy and tired as I run out of B vitamins and magnesium. I also discovered IV magnesium alone to be a fairly powerful pain reliever. I am guessing because it's a vasodilator. Of course I can't overdose it, but had I known this that terrible night, I would have put a magnesium bag through my port. I expect the IV meds are helping because I decline between treatments but it's not enough alone to cure me. I am hoping the IV support alongside the antibiotics may prove to be the key since I have only previously done one or the other but not both simultaneously. Who knows through. Truly, I mostly am just trying to live as long as I can. I don't really expect anymore than I'll be fully well in this life.
The kids are doing well. Tom and Shreya are blissfully clueless that other Moms don't do IV's at home. The other three forget and have to be reminded at times why our lives are different than they'd like. We don't run around or do as much as we once did, but in some ways it's a blessing. Instead, we play board games, enjoy cooking a meal together, talk, look forward to Downton Abbey on PBS to watch with the older children, have more time to watch and crack up at Tom and Shreya's ridiculous antics and Jim has started reading aloud to me everyday. It's the highlight of my day honestly. He is reading a book about Saint Patrick to me now. I sew sometimes when I can. Some days just making a meal or two is about all I can muster to do. Friday is my busy day when I have to drive to Kansas City for Jacob's allergy shots and get my groceries. I have a steroid I take that day every week, or any other day I leave the house for long. I like to joke that my family eats so much that I have to take steroids to be able to do the shopping each week for them. Hehe
For those of you who are well and running all the time as I once was, slow down a little. There are things you miss when you keep too busy and too distracted to notice the simple things. Do more of the things that make memories. If you don't know what that is, ask your kids what they remember most fondly...then do that.
Thank you all for your prayers and support.
