Lyme & Codependency

Where do I even begin with this one? First a quick update. I continue to battle both Lyme and mold disease. My latest diagnoses? Some lovely disease called MARCoNS which is basically antibiotic resistant MRSA in my nose and sinus cavity — it’s probably been a breeding ground for years but explains why all my brain MRI’s over the last seven years have showed unexplained chronic sinusitis but I’ve only had one really bad sinus infection my entire life. All this was kicked up by three cell phone towers installed on top of an apartment building around the corner from our home — basically poisoning my already weakened body and the radio frequency kicked up the mold mycotoxins by 600% according to the research I did. My life now consists of carefully timing about 100 supplements a day along with something called binders which pull the mold out of my cells. Binders and supplements need to be spaced two hours apart so the binders don’t void them out. Also need to take binders away from food so they don’t pull out the nutrients. I’m losing weight again as the combo of everything as killed my appetite.

Anyways, let’s go back to codependency — a couple weeks ago I finally sucked it up and posted a beautiful GoFundMe account eloquently written and set up by two dear amazing friends who are like sisters. I couldn’t bring myself to write it myself so they offered to do it for me.

https://www.gofundme.com/wendei039s-fearless-fight&rcid=r01-155944482445-9ba9840205bf45a9&pc=ot_co_campmgmt_w on my personal Facebook page.

The page was ready for nearly two weeks before I got the courage to post it. And honestly — I felt like the biggest loser in the world doing it.

I’m a longtime codependent. I dated a series of alcoholics beginning when I was in high school. I even married one and had two kids with him. It took me finally joining Al-Anon and attending meetings for two or three years before I finally got the courage to get divorced. But I will always be a codependent in recovery — always. It’s not something that ever goes away. When I started dating again a few years after the divorce I made it a point to only date people that were either in a 12 step program or had been through therapy and believed in it. I found the guy and it was the first truly healthy romantic relationship I’d ever had. He wasn’t an addict and I made it perfectly clear on our first date that I wouldn’t date him if he was. So I got it right in the relationship department but the rest of my life? Apparently not so much.

I still feel like I have to be in charge, control everything (not people anymore thank goodness thanks to the 12 steps and knowing I can’t control people, places or things). But the “things” part I still can’t let go of. The not having to be right part I’m still trying to master. And I STILL. BEAT. MYSELF. UP. EVERY. DAY.

Almost a decade ago a dear friend who had known me for 22 years suspected I had Lyme. I’d been newly diagnosed with fibromyalgia. She’s an infectious disease doctor — one of the only in the country that not only believes in chronic Lyme disease but specializes in treating it and researching it. She saw it in me and over the years she’d beg me to let her test me — but I knew best and my stubborness wouldn’t allow me to even consider she was right. See? There I go again — beating myself up — my therapist said I make it an art form — that’s how good I am at self deprecation.

Four years ago after steadily gaining 10 pounds a year and being told I was medically obese from “metabolic syndrome” I decided to get weight loss surgery. I told my friend I was considering it as she was worried about all the weight gain. Again she begged me to come in and get tested. She said if I had Lyme and treated that the weight would come off. But again I resisted as like most people I thought it was an East Coast disease — something you get from a tick and I’d never been bit to my knowledge, had only lived back east for barely a year over 25 years ago and never saw a bullseye rash. There was no way in hell I had Lyme — it was the fibromyalgia and metabolic syndrome making me fat.

So….I altered my body. Vanity took over my brain and instead of even considering the possibility maybe there was a true underlying medical condition — a bacterial infection that was causing me to be fat — I underwent surgery. Sure it solved the weight problem. Interestingly, during one of conversations with my surgeon leading up to the surgery I asked him if anyone had ever lost too much weight. Crazy question, right? But something deep inside needed to ask. His answer was that it had never happened to any of his patients. That the body knows what to do and it knows when its at its perfect weight and stops losing. And true to his word my body cooperated for almost two years — until it didn’t. By the middle of 2016 I started losing weight again — no reason for it. I was eating healthy and regularly. I was always tired but hey I had fibromyalgia!

By the end of the year my immune system had given out and I couldn’t ignore the fact that something was seriously wrong. I was down to 85 pounds and looked anorexic. Some people thought I had an eating disorder. I saw my doctor friend during that time and again she begged. I was more concerned about an old love from years ago who had been diagnosed in 2012 and wasn’t doing well. I asked her if she’d treat him and while she agreed — she said “what about you?” Even then I was stubborn and it took my old friend saying he couldn’t make his appointment to finally get me to take it myself and prove to her she was wrong because codependent me knew I was right and she had no clue what she was talking about. My ex had been bit and had the rash — he had a firm diagnosis. Me? I had fibro! And dammit I was going to show her I was right!

Until — I sat in her office that fateful night waiting for her to read the mountain of paperwork I had filled out earlier. While I was waiting for her she asked me to read an article from The New Yorker Magazine from 2013. I read a page and was like “yeah, whatever…” And then I got to the paragraph about symptoms — I had nearly every single one. By the time my friend came in the room I was sobbing. And I’m bawling just writing this as I know my own stubborness, my absolute need to be right — my know it all attitude had prevented me from seeing what was right there the entire time. Most Lyme patients go YEARS without a proper diagnose because doctors don’t believe them or think it’s all in their head. NOT ME! I had a friend who had been telling me for years! She was a f’ing doctor who specializes in Lyme disease who knew me for over two decades and saw it in me and I was the idiot know it all who told her she was nuts. Who does that??? A codependent who needs to be right — who already knows the answers and doesn’t need help much less know how to ask for it. The next day I took my test kit to the lab and they drew I kid you not 40 vials of blood. Two weeks later my friend called — “You tested positive for Lyme.”

So here I am — two and a half years later fighting for my life. Literally fighting by stinging with 10 bees three times a week because bee venom therapy is the only known cure. By taking about 100 supplements a day as well spending tens of thousands of dollars retrofitting our house for mold and EMF/RF poisoning. Yes I’m one of those crazy people who turns my phone on airplane mode now, and is hard wiring my laptop with an ethernet cord, dreading the roll out of 5G, turning off bluetooth except when in my car to make or receive calls. Paying thousands of dollars out of pocket to doctors who not only believe me but specialize in Lyme. The only reason I don’t see my friend as a patient anymore is because after 9 months on antibiotics I decided they weren’t for me — I wanted a cure not remission and I knew it would take years of more and more antibiotics to maybe achieve only remission. Sadly she lost the love of her life last month due to Lyme Carditis. Yes people really do die from this disease. There’s a saying that some people die from cancer but most people who have Lyme wish they were dead and that’s me more times than I’d like to admit because this isn’t a life.

And we’re bleeding money — credit cards nearly maxed out. All the travelling I thought I’d be doing at this stage of my life isn’t even on my radar anymore as each day I wonder if I can even make it out of bed to get to work.

Asking for help. Dammit, dammit, dammit — it’s so f’ing hard. I’m the one who has taken care of everyone my entire life. I took care of my parents’ feelings when I was being sexually molested for six years as a little girl. He was the husband of my mom’s best friend so six year old me, 8 year old me, 10 year old me didn’t want to ruin their friendship. My dad kept a gun in the house and I thought he’d murder the guy if I told and he’d go to jail and I’d be the one who destroyed two families so I didn’t tell. That’s where my codependency started — 50 f’ing years ago.

And here it is again rearing it’s ugly head all these years later after 15 years of Al-Anon and more than 3 decades of therapy. I still can’t ask for help.

A wonderful client of mine wants to send the link to my GoFundMe to my client base. I have almost 2000 emails in my contact list and she made the offer two weeks ago. I’m embarrassed to ask for help. Why?? I’m so goddamn good at helping everyone else but I’m too proud and embarrassed and ashamed (there I said the word) to ask for help so I can get the treatment I need to live. I feel like everyone is judging me. My husband has a good job. We pulled money out of our house last year to buy a condo in Cabo last year thinking I was in remission and healthy. My son who has Lyme is in private school for two more years and I can’t uproot his life by making him switch schools and selling our house. We have over $130,000 in college loans from my husband’s previous marriage that he agreed to pay. We keep having to put it in forebearance so I don’t even want to know what the balance is these days. I’m sure people look at us and think we have all the money in the world to pay for my treatments but as I always say no one ever really knows what goes on behind closed doors.

I’ve had to let go of being stressed out about money or saving for retirement. All I want to do is live and not die while my children are still young and my parents are still alive. See? Still codependent — but isn’t that healthy codependence? Not wanting to hurt my family?

I beat myself up daily. Why did we buy the condo? Why didn’t I listen to my friend 10 years ago? I’d be better by now. Why can’t I ask for help? Why can’t I let my friend send the link to my clients? Because I KNOW I’m being judged for my mistakes — how can I possibly have the audacity to ask for help when I did this to myself? I know I know it’s ridiculous right? The things I say to myself every day because I still think I know it all better than anyone else.

So here in Medium/internet/blog/stranger land — I’m laying myself out here — raw and vulnerable.

Please….help me…. please help me…please.