I am in Rifampin hell. By hell I really mean the burning fires of doom. I should say that I am not a religious person, mostly because I was raised by ex-Catholics who had a sour taste in their mouths about the Church and all associated with it. My parents believe in faith though...and that is another thing I did not really learn growing up. So this is what I imagine hell to be like just from the generality of what I have heard on the subject of heaven and hell, non-religiously like.
Watching your kids struggle, be sick, need you - when you cannot possibly give them what they need, getting stressed out because mama looks like death warmed over and is acting erratically, and much much much more, is torturous in ways I didn't think possible. At this stage in the game I don't really know how to get them well. I know what would help but I can barely put two sentences together and don't even bath bi-weekly anymore, if that gives any indication of my ability to help anyone right now.
People always telling me about the airplane mask story...moral, you help yourself 1st so you can help your kids. But if you can't help yourself first...then what happens?? Because that is what is happening in my family. If I try to get well to be a mom for my kids then I get too sick to be their mom and there is no end date on that yet so...now what?...my fucking mask doesn't work so do I use my kid's?
The worst part is having to put a price on our lives. This rolls in my mind and makes me crazy: We don't have the money to do what it takes to get us well. We could afford it, for awhile anyway, if we opted for the road where my husband ends up losing his job and then we lose everything but the clothes on our backs. BUT: We could afford to do that. Could we? What if we put it all up for betting and even just one of us went into remission??
Lymies are like the suckers at a Fair's ring toss booth. Tossing ourselves at anything that looks hopeful, even though we know it will take everything in our wallet without a guarantee.
My kids are in Rifampin hell too. Symptom increases in; rages, muscle weakness, fatigue, jaw pain, joint pain, muscle pain, anxiety, tics, autistimy flaring in my 4yr old. Side effects of the Rifampin seem to be stomach upset, diarrhea (this is so rare I almost count it as a miracle my kids are normally so plugged up), and drowsiness. I have them on 1/4 of the dose they have been Rxed. Going to move slower than slow.
My symptom increases have been; anxiety, ear ringing, muscle weakness, paranoia, joint and weird organ pain, headaches & migraines, neck pain, pain pain, FATIGUE, and something something...oh, right!, cognitive function right down the shitter, or "potty" as we call it in our house. Side effects of Rifampin are; drowsiness, diarrhea, and no-appetite (not that it's really working in my favor and I probably could stand to lose another 10plus).
And I forgot to mention we are all peeing on the "potty" like crazy. When you already have 2 tiny kids with 2 tiny bladders and then they have to pee 2-3x as often, plus my tiny, currently weak (I am not much of a Kegeler) bladder is a LOT of time we have spent in the bathroom this week. Plus all the "accidental" peeing around the house as an additional bonus.
We got out the juicer and are going to start doing more green, detox juicing - just need to get to the grocery store regularly and the time to juice (all of this is on my husband's shoulders along with everything else). I am going to try Mitosynergy when I can drink enough water and I am too sick right now. Need to up the probiotics. Going to get parsley and burber drops....lots of other plans too but no energy or bodies to execute them.
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