I have Lyme. I’d like to not have it anymore. I also just want cake.
Finishing the 12 days that was Cycle 8 in my Lyme Disease Treatment was like coming out of a coma of 14 more wasted days of my existence. Only this coma I was conscious enough to realize I have never felt worse in my entire life. Well, except that one time last summer where I visited the ER three times in one week because I was sure I was dying. But other than that, Cycle 8, you were the worst. Week one started out nice enough with infusions just Mon, Wed, and Fri night. However, by Friday nothing was working right in my body. Like seriously, nothing. It seemed all brain communication to the rest of my body was severed and movement, vision, digestion, breathing, speaking, everything… worked soooo slooooow. This, of course, made detoxing absolutely impossible. Then came hell week. Sun-Thur, four infusions a day (that’s 20 strong antibiotic infusions in five days), ending with the absolutely nightmare of a drug Tigecycline each night. Basically it was “let’s just pump Tara full of drugs as everything that would get rid of them shuts down week”. The drugs and dead bacteria guts with their toxins of decay … all that goodness, swimming around my body, impairing brain functioning for days. It felt like the worst acid trip and stomach flu combined. My sweet father and husband did everything for me from bringing me water 15 times a day to coaching me to breath during a limbic seizure to making me detox foot baths and reminding me I only had three more days to go, then two more… then one more. I truly couldn’t go through this without their support. I know I will credit Dr. J for saving my life (and because I like a bit of sass I’ll later say he tortured me as he did it), but I will always credit my husband and parents for truly getting me through each horrible moment and keeping me going so that there was a life TO be saved.
… Wait, I feel like I’m not done complaining. Let’s go back to that. The nausea. Let’s talk about the nausea, briefly, if I can. If there was a cliff I’d have dragged myself along the dirt, acquiring dust as it stuck to my drooling face, to its edges and rolled off. I know I have said that many times during a bout of stomach flu, but this time I actually mean it. This time trumped all. I felt nausea in every fiber of my being. It kept me up all night. It tortured me all day. No amounts of Zofran, Promethazine, or Marinol (I am taking cancer strength nausea drugs people) could keep it in check. I had to force-feed through it, watch Carl’s Jr. commercials through it, smell dinner cooking through it, exist through it. I was forced to drug myself up and try to sleep during the day, waking for infusions and meals and a seizure or two, face constantly in the couch probably making all sorts of suffering-type noises. Just know, it was awful. Killing Borrelia spirochetes is an awful, awful, barbaric process. But if I want to live, really LIVE again someday, I have to.
*Gets on her pretend soapbox* I truly hope that future medical research can find more gentle and tolerable ways to eliminate this bacteria from one’s body, brain, and nervous system. It’s just crazy that constant high doses of Ativan, Klonopin, Neurontin, Anti-seizures, and anti-nauseaus still can’t keep me comfortable through this. That alone is a testament to how much suffering is involved in ripping out a deeply seated “Borrelia and friends” infection. Where is the new research!? Where is the advancing medical discoveries alleviating Lyme patients everywhere?! Shame on you all! I believe so many people remain ill because they just can’t tolerate adequate treatment, are deathly afraid to get aggressive with it, and opt instead to spend the rest of their lives trying to just ease their symptoms for as long as they can. It’s sadness. But I understand. I really do.
However, back to me. I have survived Cycle 8.
Aw, one little smiley face on Tuesday. One last cute, naive little smiley face.