What a year it’s been! It’s like groundhog’s day pretty much every day. Well it was until last Monday when we got to reopen. For those of you who don’t know, I’ve been an esthetician for 26 years and have owned my own business for 24 years. I’ve been in my current location for close to 9 years and have turned my place into a full on wellness center. My daughter Sarah and I flew to San Antonio the end of last August to become colon hydrotherapists and I purchased a Libbe Open Colonic device.
I know most people have been too afraid to fly in the midst of a pandemic but after we flew to Cabo last July, I was fine as I knew what to expect. I love my frequent flier points so we either use points or we do cash plus points so that we can fly first class — not all the time. but most. The middle seat is always blocked and we have this nifty personal care devices by Vollara that we wear around our necks and they emit a tiny bit of ozone so they kill anything in our personal space. We wear them in the airports and on the planes.
My trip to Cabo last year was magical and I’ll write more about that later and post some pictures and it was so special — especially the last night when we had dinner at one of our favorite outdoor farm to table restaurants, Tamarindo. In attendance were some incredible people including the owner of my stem cell clinic, Brigitte Hanley who cloned the first human back in 2002 — Saturday Night Live even did a spoof on her. But she actually cloned a baby. She’s truly a genius. If only she’d clone me — a better version without Lyme and with energy so I can fly all over the world and not be sick.
I was in remission while I was there — it was the healthiest I’ve felt in years. But sadly as soon as I walked out of LAX my brain swelled and I could feel it getting worse and worse over the next 24 hours and I finally blew a gasket the next night when I went all Linda Blair from the Exorcist on my poor husband. I was literally screaming at him “Die muthafucka!” I felt so bad — I couldn’t even apologize that night as I knew it wouldn’t make a difference so I waited until morning to write the very apologetic email. Thank G-d it hasn’t happened again — okay it did once when I took Sarah to WA to start treating with my Lyme doc, Dr. Christine Schaffner. I lost my shit on her in the hotel room and threw a box at her and it scratched her face. Again a lot of apologizing took place but she forgave me and I haven’t had an attack since and my relationship with her couldn’t be better. She called me her queen and I call her my princess — actually she’s my JAIP — Jewish American Indian Princess as both kids are 1/8 Native American Indian (Oneida is their tribe) via their bio dad.
Anyways, the reason my brain swelled is because I was bombarded by the air traffic control towers and a ton of other pieces of equipment that emittted tons of RF (radio frequency) so my brain took a real hit and it hasn’t been the same since. Not sure if I told you that I tested severe positive for PANS — I took the test because I had to test my son, Shayden, because his then therapist was accusing me of Munchausen’s by Proxy. As if I’d make any of this shit up and wish Lyme on anyone, especially my own kid. I fired him by the way and end up reporting him to the medical board — turns out he’s not even a doctor — he’s been lying about it — he’s really an MFT. Not that there’s anything wrong with it, my own therapist is an MFT, but come on, just be honest and don’t go accusing mothers of Munchausen’s just because they’re using neurofeedback to help their kid sleep at night.
Anyways, outside of being exhausted most ever day, my brain is a mess. I feel it swelling as soon as I wake up in the morning — the last two days it was just a really bad headache — this morning I took a low dose steroid — and some days I just feel the brain swelling. I can’t get approved for IVIG which is the standard treatment because I only have one immunoglobulin deficiency — which just happens to be the worst one to have and the most rare. Call me crazy but shouldn’t that type be the one that gets approved immediately? I’m high risk for stroke and seizures because my vasculitis is so severe — vasculitis means the arteries and veins in my brain are super duper constricted so I don’t get enough oxygen to my brain which is why I forget things all the time. Yesterday I was in a marathon MRI — I think I was in the tube for well over 2 hours — and I’d think about something and the next second it was gone — no clue what I’d been thinking.
During my last trip to WA, I started with a new neurologist named Dr. Irene Rohoy — yay! Finally a Jewish doctor in WA! In fact her entire staff is Jewish — yay me and yay the Tribe! She did a ton of tests and labs and workups on me. I don’t have small fiber neuropathy but I do have peripheral neuropathy which I already knew. She tested me for Ehlers-Danlos syndrome but apparently the hypermobility kind which I have doesn’t show up in labs. But she sent off my blood to the Mayo Clinic and if their results show I have encephalitis which I have all the other markers for, then insurance will have to approve treatment. I had a home health nurse named Linden who is awesome (we talked politics leading up to the election and celebrated the results together) but she stopped coming because she skin over my port got infected. Turns out it was cellulitis — ugh — and I had to get it removed. Now I have a hole in my chest and Kris has to change my dressing every day until it totally fills in and then I can get orders from my vascular surgeon for a new port. I have about $900 worth of vitamin C and glutatione and glyzzheric acid (licorice root) in my house for my IV’s because (wait for it) I was fired by Dr. Bick’s partner, Alex Kawana, as a patient all because I sent an email to him and copied his assistant. Mind you he told me as soon as I became his patient that he rarely checks email so instead of continuing to bug him with texts, I thought it was more respectful to copy his assistant so she could alert him. Apparently he saw it as a sign of disrespect and dumped me so now all my IV’s are out of pocket. I need to call Aetna, our insurance company and let them know he fired me so maybe they’ll actually cave and cover everything. Stranger things have happened, plus they’ve denied a ton of claims over the past several months so I need to call them regardless.
Anyways it’s getting late here and the dogs want my attention and Kris I’m sure would like a little attention as well so I’m gonna sign off for the night.
Tomorrow I have a client at 11, then need to pick up my dad and take him to the cardiologist and then he’s going to have to go with me to see my hematologist who is managing my iron.
Oh! And to top it all off I need to take my son to the urgent care to get COVID tested as his best friend’s mom has it and he was at their house 5 days ago — ugh. Just what I need — to have to quarantine for two weeks right after I get to go back to work. Crossing fingers!
Okay really signing off now so have a good night everyone and I’ll touch base soon.
To be continued….