chronic lyme disease with a taste of nut
While taking a detox bath tonight, a song by Audra Lynn came on with the following lyrics. In the song, God is speaking:
“I never said it would be easy. I only said it would be worth it.”
Doesn’t that punch you right in the gut – in a loving way? I admit, I cry when I hear that verse. I cry in a knowing kind of way. I cry in an angry, what-do-you-mean, whining kind of way. But then I cry in a hope-filled kind of way because I know God knows how much pain I am in, how much those with chronic lyme suffer, how much all human beings suffer. He knows because He knows how much His Son suffered. God knows about suffering. His heart breaks every time we run from Him, turn from Him, reject Him. He yearns for our whole, devoted, undistracted hearts.
So that’s why I’ve been having a really hard time during these herxheimer reactions – the intense physical and (sometimes more intense) emotional suffering can trick one into believing the lies pinging around the mind: that you are alone, that no one cares, that the world would be better off without you.
Bartonella – that is how it goes with this disgusting illness. I don’t doubt now that I’ve had Bart since I was a child. My beautiful and loving cat that I had from age 3 to 20 was also angry and scratched and bit me constantly. I loved her all of those 17 years; she was my baby. I never thought that kind of love could give such a horrible disease. What a fallen, fallen world this is.
Bartonella messes with every part of you – your body and your mind. My brain is hugely affected. I won’t go into every detail as this becomes intensely personal, but I will say that this disease needs advocacy, education, and acceptance – yet simultaneously needs doctors who are unwilling to look the other way, doctors who are committed to finding a cure.
The herx I went through last weekend was a three-day affair, coming and going in waves. The worst wave hit Sunday evening. Physically, my body was shaking internally, my arms and feet were ice cold internally and not externally. It felt like my brain was swelling. The pressure and pain was immense. I could hear the blood wooshing around in my ears. My eyes became blurry and I saw a dark spot in the middle of my right eye for about a day. I could barely stand up due to dizziness and fatigue. The arches of my feet were burning and a skewer-like pain shot up them. That same hot-poker-feeling jabbed at my shins, mostly on my right side. I had little involuntary convulsions. That is a physical description.
Emotionally, I had horrible thoughts swimming around my head and bad impulses. I had already discussed a plan with my husband about what I would do if those thoughts infiltrated my mind so we were prepared, which is good. I had this awful sensation of being out of my body, of things feeling “unreal.” If I spoke aloud it echoed and didn’t sound like my voice. All other noise around me became warped and out of sync as well as louder than normal. I wanted to scream, to cry, it all to stop.
My husband had to help me drink a glass of water with Tri-Salts that Dr. W gave me to take during a herx in order to make my body more alkaline. I think the salts took the edge off because about ten minutes later I was no longer in an emergency state.
That same weekend I had such GI problems that we thought I might have C. Diff. For three days in a row I had such severe intestinal problems that I could not leave my bedroom. Many lymie friends told me this herx was not “normal” and that I ought to contact Dr. W first-thing on Monday. Some lymie friends assured me this was “just” a herx and I had to ride it out. Some family and friends told me to get off the antibiotics and some family and friends told me I had to stay whatever course the good doctor put me on. My head was spinning from migraines, other headaches I had never had before, and conflicting advice.
I talked to Dr. W’s assistant on Monday and he insisted two doses of antibiotics could not bring on a herx this severe. I cringed, remembering this blog entry I had written. I assured him I was feeling this. I told him it must be the supplements, the second batch he put me on after my second appointment. So he told me to go off the supplements and go back on them one at a time. The assistant reassured me and said she knew this was a very hard road – they had countless patients going through the same thing or who had gone through the same thing. I just had to keep pushing through it. I had to give the antibiotics 4-8 weeks at least. Nothing could be changed if I gave up now.
So, feeling so beaten up and discouraged, I hung up the phone and planned my strategy of taking the supplements out of the equation and how to add them back in one by one.
In the meantime, I had to do more research about detoxing yet at the same time be careful not to detox too much because that can cause a herx. A too-long epsom salt bath was what brought on the worst herx on Sunday.
I went to urgent care on Tuesday, thanks to my wonderful aunt who came up from the Chicago area to help take care of me and help out the family. The test results were negative for C. diff, thank goodness, and my assumptions were correct: it was a bad herx.
Slowly over the past week I regained my ability to go out of the house, to go back to work. I noticed, however, each night around 6 or 7:00pm I would start to “go dark.” My mood would dip and I would slip into an emotional herx. It feels like neverending quicksand. I’ve been able to withstand the worst of it through praying and taking my Tri-Salts and Alka-Seltzer Gold (which does the same as the Tri-Salts) and continuing to carefully and methodically detoxify my body.
The most effective thing has been prayer, praise, and worship by far.
I continue to remind myself that God is bigger than any infection, any pill, any spirochete or big-named bacteria.
Nothing can stop me from dancing in my heart if I can’t dance on my feet. And nothing can stop me from singing in my soul if I can’t utter a sound.
And so when I am on the floor in puddles of sick and tears, I lift my head and I do look to where my help comes from, my only help, my only hope.
And I rest in Jesus, I rest in knowing He’s got me in His lap, in the folds of His robe, in the shade of His arms. I know He hurts with me, He weeps with me, He sits beside me and listens to me cry and lament.
But with every lament, I have learned, must come praise. There can be good in everything. We just aren’t in charge of defining what “Good” means. God is. So I do trust that there is “good” in what I walk through.
I know it is “good” because the Jesus who walks beside me is good. So though I don’t know much about this illness, though I don’t understand “why” or “how can I do this?”…I do know my God.
And the most beautiful thing is – He knows me.
“I never said it would be easy. I only said it would be worth it.”
Illness can lie. Bartonella tells you in its insidious voice that you are worthless and too sick to be loved but God’s voice rings ten thousand decibels louder and tells you that you are lovely, beautiful, wanted, necessary.
Our world is full of sickness, disease, tragedy. It is a broken world. God is not a broken God, but a whole and powerful Lord who knows more than we will ever know. He already knows how this will all end up. He knows the next blog entry, knows when the next herx will be, knows when I will find relief; He knows how I will bring Him glory through all of this.
I know this won’t be easy. But because I trust and know God loves me more than I can possibly imagine, I know it will be worth it.
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