Shit’s Getting Real…
Tomorrow is election day. What does this have to do with Lyme and my medical journey through hell the past going on four years? A lot actually. Prior to when I was diagnosed the middle of February 2017, I truly thought I was healthy. Yes I had weird things like migraines several times a week, bladder pain, joint pain etc. but I never got normal sick. I would go years without getting a cold or the flu. But the end of 2016 was when everything changed.
Let’s go back a little bit. I’ve been a Democrat my entire voting life and even before I was of age. When I was a little girl growing up in the Valley, I remember when Gerald Ford was president. I don’t remember why but he flew into Van Nuys airport on Air Force One and my dad piled us all in the car and took us to meet the president. Yes, Ford was a Republican and my parents were always die-hard liberals but the President of our country was someone to respect. There was no us and them back then. I remember Nixon resigning on national television and of course it was a big thing but I don’t remember anyone saying, “there goes those criminal Republicans again.” Nixon got all the blame from what I can remember but then again I was little. Anyways, there we were, my mom and dad and my little brother and I, standing on the runway at Van Nuys airport meeting the president. Ford shook my dad’s hand and patted me on the head and it was a special enough moment that I’ve remembered it all these years. I was three months old when John F. Kennedy was assassinated and remember the tears and the shock of not only my parents but of the country. Last week I had the pleasure of meeting Robert F. Kennedy Jr. at a private dinner to talk about the dangers of not properly tested vaccines but I’ll leave that for a separate post as it seriously was a milestone in my life.
Anyways, I didn’t become political until I had kids. I was a hippie child growing up in the 60’s and 70’s and knew we had no business being in Vietnam because I was close with my cousins who protested. But I didn’t really care all that much or take a real interest until I became a mom. My daughter was born during the Clinton presidency and to this day I can’t figure out why he was impeached for lying about an affair. I mean, my G-d, do the majority of people have affairs admit to it the first time they’re caught? Yes the President should be held to a higher stand but seriously? An affair? JFK had plenty and everyone LOVED him and mourned his death. But that’s when I remember that the us against them mentality really began. I mean, Ken Star seriously had it out for Clinton and so did Newt Gingrich who of course was busted years later having his own affair…whatever. Pot, kettle, black, right? Who cares???
Anyways, I was both a Bernie and a Hillary fan in 2016. I was ecstatic when Hillary won the nomination and was SO sure she’d win. My daughter had just graduated high school and was working and got someone to cover her shift so she could stay home and watch the returns with us. My girlfriend was in town from Ithaca and we had appetizers and a good bottle of tequila and an even better bottle of champagne waiting for us to celebrate. But we all know how that night went down. Shock. Horror. A call from my cousin in Montreal, wanting to know what the fuck was happening and letting me know we could all come and stay in her basement until we found jobs — this was before the win was announced.
I, like a good part of the country, kind of floated through the next couple weeks praying we were wrong. That Trump really WOULD drain the swamp and do all the good things he said he’d do for the middle class. The day after the election I sobbed. I was working at the Disney Family Cancer Center in Burbank on Wednesdays giving facials to cancer patients. I worked on one patient and had to go home afterward as I couldn’t hold back the tears any longer. I sobbed in bed the rest of the day. The only thing that kept me going was knowing Kris and I were leaving for the Mayan Rivera a few weeks later for Thanksgiving week.
It was an incredible trip. We rented a car, spent two days in Tulum, stayed at a beautiful resort and Kris fell absolutely in love with Mexico. We talked about maybe one day buying a home in Tulum and retiring there. We ate amazing food, saw the ruins in Tulum and spent Thanksgiving day on the white sand beach and ate shrimp and drank tequila in our cabana we paid all of sixteen bucks for. There was more fun that happened after we left the beach but it’s irrelevent to this post. The next morning I woke up in writing pain. It was like someone twisting my intestines. I’ve given birth to two kids and it felt like labor pains in my gut. I spent the day between the bed and the bathroom floor and the rug in the bedroom. At 6pm I finally asked Kris to call downstairs and find out where the closest ER was as I didn’t think I could handle being in pain another 12 hours. Turns out there was a resort doctor and he came up and diagnosed me with gastritis. I would go on to get sick 3 more times before the end of the year leading to my diagnosis of Lyme.
I truly 100% believe in my heart of hearts that the election of 2016 is what triggered my immune system to crash and all the infections in me to take over.
In less than 12 hours it will be election day. Honestly it’s been election day for a few weeks now as polling centers and vote by mail have been HUGE because of COVID. The country has never in its history ever been so divided. People are proud to be racists. Talk about more PTSD. The last four years have been filled with trauma — not just for me personally but for the country.
And in 12 hours, I’ll be at UCLA being wheeled into an operating room with a CT scan machine to get a bone marrow biopsy to rule out leukemia. I’ve been oddly calm about it like I’m calm about the election tomorrow. A serious wrong needs to be righted. I do think Biden will win and I do think we’ll take back the Senate and good will prevail — it has to, right?
Me? I’m not so sure about. I’ve been putting on a good front for everyone including myself. I know my body very well. Almost four years of living in this hell that’s my body, I can feel everything. And for the past month I’ve known something is wrong. My fatigue came back. Two weeks ago I was so week I got up to go to the bathroom and my legs went out from under me. I ended up being admitted to the hospital the next day and we still don’t know what happened.
Since Dr. Bick died I’ve felt like something was off with my labs but no one seemed concerned. Every week I’d see his partner and he’d tell me I didn’t need iron which was odd as Dr. Bick gave me iron even if I was low normal as he knew I had autoimmune disease. I ended up in the emergency room again a couple days ago because I felt really weak and had Kris drive me to work. In fact, I’d felt too weak to drive for the past few days. I did leave the house once on Friday to go to Valley College and VOTE!!! Anyways, I was standing in the hallway about to turn on the a/c and suddenly I was so weak I had to lay down — right there on the floor in the hallway. Kris ran over and I could barely talk — like one. word. at. a. time. Apparently I had to pee really bad but couldn’t and I kept asking Kris for pee-pee pads aka wee-wee pads — those blue pads you put down when you’re training a puppy.
Again no one can really tell what’s wrong with me. Every doctor has a different opinon. Some think I have a condition called hemotomachrosis where your liver produces too much iron and you have to dump blood. Dr. Kawana doesn’t think I’m anemic. Dr. Arzoo, who ordered the biopsy is very concerned. He’s shocked I haven’t had iron since Dr. Bick was alive. He said, “you have 57 years of inflammation and auto-immune disease, you aren’t producing enough red blood cells and your iron is high so it’s not going where it’s supposed to, you have a history of leukemia in your family. Something is very wrong. The next day the surgery center was calling to schedule tomorrow’s biopsy. I spoke to Dr. Arzoo tonight and he said the l word again — leukemia. He told me there’s absolutely something medically wrong with me and the bone marrow biopsy is basically the gold standard to find out what it is. Sadly it could take between 1 and 2 weeks to get the results because it’s marrow, not blood and because it’s coming out of my bone it has calcium which needs to be removed and I guess it takes time — I didn’t ask about the process.
So yes, tomorrow is a defining day, not only for our country, but for me personally. Tomorrow, good will prevail in our country. We may not know all the results, even in the most important race, but I’m going to celebrate every win. I know things are going to be ugly for a while and I’m prepared. But in my heart I feel like it will be okay. And if it’s not? Then I’m leaving the country as I can’t deal with yet more trauma….
Although…..I may not be able to leave at least for a while. What if I do have leukemia? My name is spelled the way it is because I’m named after my Uncle Willie, my dad’s older brother. He died at age 24 of leukemia. My parents didn’t want “die” at the end of my name for good reason.
And who knows? Maybe it won’t be. Maybe it’s because one of my co-infections, Babesia, is eating my red blood cells — yes Lyme is that evil — it eats your blood cells — Lyme — the horror film. Maybe it’s something called pernicious anemia I’ve been learning about although both doctors didn’t seem to think I had it although Dr. Arzoo flat out said a lot of people have it but test negative so many times it’s a clinical diagnosis.
All I know is the other night, giving myself a B12 shot, I went from feeling fine temperature wise to sweat dripping off me within minutes. I know today I felt weak again and Kris had to walk me into Kawana’s office. I know something is wrong but I’m not sure “how” wrong. If it’s really wrong then I have to stay as I trust Dr. Arzoo and I have an inner knowing that whatever I have, he’ll get this part of it better. He’ll fix my blood. So even if the election goes rogue and it’s devastating, the only chance I have of being happy in Cabo or Canada is if I’m healthy so I’ll be staying until this part of this fucked up thing that’s taken over my body is fixed.