I'm not having fun yet.

I am ridiculously frustrated and unhappy right now. I have been sick and tired for so long and I just want to go home, to my own bed but I can't. My house keeps kicking me out, despite the HVAC repair. I still have hope that we can clean up the house and it will get better after the air is filtered a few more times, but this is the pits and I'm feeling done with this part already!!

I now have a respirator (about $30 at the local hardware store) that says it's good for asbestos and toxic molds. Every time I go indoors, I either wear it or feel nauseous. I sound like Darth Vader in it. It's uncomfortable, too. We just had a rush of heat and mosquitoes so the porch has been less than perfect as a back up but supposedly the heat is leaving for a few more days. I expend so much energy on just existing right now, how on earth will I have energy for anything else? This is just crazy! 

I came to the horrible conclusion after returning home from some respite in the pacific northwest that I can't even take care of the Rife machine by myself in this current situation and my condition. My fragility is disgusting to me, when it isn't busy scaring me silly. I am having the internal conversations with myself that sound really pathetic and hopeless - like where can I go to live and get the help and environment I need? The answers are murky at best and I feel a bit lost lately. 

I was getting really scared that I wasn't treating TBDs beyond the homeopathics and gemmos that I take. I could feel the symptoms getting worse and worse. So, I finally had a Rife session yesterday with the help of my mate, but hadn't gone for so long that I was back down to 2 minutes and have been paying for it intensely since. My pain levels have skyrocketed, I'm too dizzy to walk without something to hold onto, the stabbing pains are back in my head. I'm waking up in excruciating pain in strange places of my body (for example, my ears the other night - that was weird.) I went too far with the Rife (not surprising) and am now herxing unhappily and uncomfortably and un-bedroomed - urrrggghhh!

I want to have a life outside of this illness, but it seems to be getting harder to do instead of easier. What's up with that? My latest idea, and believe me I'm running out of them, is to install the Rife machine somewhere in the basement and just wear the respirator when I go in. After all, it's only a couple of minutes or a few seconds if I try to go daily.

Oh how I'd love someone to watch over me. Sigh...

I've got it bad and I've got it good!

I have my own Rife machine!! Yay!! A friend who has been staying with me has helped me schlepp the panels, amplifier and voltage meter outside so I can Rife with clean air, sitting at my labyrinth. Now that's just sweet!! I only used it once before I left my SBS house (sick building syndrome) for a week and a half, but jumped right back in within 12 hours of being home, and talk about liberating!! It's wonderful to have this at my fingertips and I owe so many people my unending gratitude for their generosity and support.


Oh the strange things us Lymies will do to get better. Each time I hear of a new therapy, I slap the juicy vein at the bend in my elbow and say, "Snake oil? Sure!! Right here, baby!" I'll try almost anything once, usually twice just to make sure. 



My return home has been seriously challenging. First blow: I received an email from my GP that I failed the test for my immune system function (I was given a pneumonia vaccine which is not a live virus, but I was unable to make antibodies.) I fear that IvIg therapy might be my next step and that's just creepy, expensive and time-consuming if it runs weekly for a year. You can read more here: Intravenous immunoglobulin I won't know more until I see my Immunologist at UVA in late October. Sigh...
 
Next blow: I had hoped that the coil in the HVAC would be replaced, a new UV light installed and new MERV 13 filters in place while I was away, but for various reasons, it didn't happen. I was feeling comparatively good, so I wasn't too concerned about holing up in my bedroom with my HEPA filtered air, but when I woke up the following morning I was exponentially sicker. Crazy sick. So sick that I got lost on the way to my first doctor's appointment, about 6 miles from home. I couldn't figure out where I was. All of the street names were familiar but I had no clue. Cognitive dysfunction is freakin' scary. Maybe the scariest part of this disease. Fortunately, I remembered I had a smart phone with a map (I wouldn't have been able to place myself on a paper map, but my phone knew where I was.) I was 10 minutes late to my appointment, in unbearable pain, unable to concentrate, and spent most of the next 45 minutes crying and using up her tissues.



Next blow: I drove from there to see my new Lyme doc for the latest test results. She reaffirmed my genetic markers for chronic Lyme and my inability to clear biotoxins, as she suspected. Then we went over my other test results which indicated a severe problem with my pancreas, and virtually no good bacteria in my digestive track despite the probiotics twice a day, clinical strength digestive enzymes and chewable papaya. I am unable to take in nourishment properly and that's just bad. I'm also unable to return to antibiotic therapy so the arrival of the Rife is most timely and I must admit I'm pretty scared of sliding back down the rabbit hole.


Next blow: I drove from her office to a Hampton Inn in my town to see about staying there until the HVAC is repaired which would likely be early next week. I was turned away at the front desk because I was "local" which I later learned meant they were afraid that  police would have to be called because I was either a battered woman (I probably looked like one with the cane and tears) a prostitute or a drug dealer. I went home and cried angry tears and decided to not take no for an answer. The short story is that I made a reservation online and got someone there to back me up if I had a problem at the front desk. After I stayed one night I advocated for myself, wrote a letter to the manager explaining my situation and what happened, offered valid, actionable feedback using "I" statements and prepared to leave. The manager on duty came out to meet me, asked for a minute of my time, explained his policy, apologized profusely and promised to use it as a teaching moment for his staff. 


Despite feeling wildly unsupported in the big mean world out there, I was able to love myself and act accordingly, so I call this one a win. And now, I invoke ease, gentleness and grace. Enough of this trial by fire stuff, already!!