Mom first got sick when I was a baby. Two years old maybe. It started with a simple tick bite when we first moved down the shore. She developed Lyme Disease, but none of the doctors knew that at the time. For weeks she struggled with the illness– joint pain, headaches, depression, and eventually she became numb and forgot where she was. By the time they figured out it was Lyme, it was too late. They put her on an IV for quite a while– I don’t remember how long, but I remember the nurse that came to the home, Lois, who used to blow up gloves and draw funny faces on them for me. I remember mom and I watching the air bubbles going through the IV tube. The little bubbles were ‘cars’ and the big ones were ‘trucks.’ She didn’t want me to be afraid of what was happening, so we tried to laugh about it.
I remember her sleeping a lot. All the time. She would go into episodes where she would barely get up for weeks at a time. Sometimes she would blare her stereo with Bruce Springsteen or Bob Dylan and lock her door. She wasn’t neglectful; she was sick. And no one knew how to fix her.
Eventually her immune system became so compromised from the Lyme that she developed other illnesses. Diabetes was the big one. She was diagnosed when I was maybe 10 or so maybe. I can’t remember exactly. She hated losing freedom, and to her, having to constantly monitor her blood sugars, watch what she ate, take her insulin, it was all losing her freedom to her. She loved her sweets– cakes, candy, whatever– and she would continue to eat it. You could see the sadness in her eyes when she did. She knew she shouldn’t eat it, but damn it, no one was going to take away her freedom to do as she chose.
There was several times she ended up in the hospital for her blood sugar or complications from the diabetes. She was diagnosed with neuropathy in her legs. She had scarring on her brain from the Lyme. Some doctors even thought it was MS.
Then they found a brain tumor in 2009. I remember the day they first discovered it. Mom and I had been driving to BJs Wholesale in Toms River. I was driving my first car, a Mitsubishi Diamante, dark green. Looked like a BMW. I loved that car. Anyway, we were stopped at a red light and I put my blinker on to get into the turning lane up ahead. Just as traffic began to move, we were rear-ended by an F-350. Phew, it hurt like a bitch. The car careened forward and I hit an older couple in front of us. Mom’s scream from the passenger side as she hit her head on the dashboard (or maybe the window– we were never too sure because we were both wearing seatbelts, but the force was just too strong) sent me into immediate tears. I was more worried about her back as she had recently fractured her spine after a filing cabinet incident (a story for another day…) but she just kept grabbing her head.
I jumped out of the car and checked on the people in front. They were fine. I ran to the guy who had hit us who was apologizing profusely. I told him ‘whatever, man. Are you okay?’ He said yes, he was fine. We pulled over to the side of the road and waited for the police. The ambulance came. We left my car at a restaurant and rode the ambulance to the hospital. I called my husband at the time and told him what happened. He seemed pissed at the time about having to leave work. We had only been married for barely two months at this point.
At the hospital, Mom and I had rooms across from each other. They did MRIs on our heads. I came out fine, except with some pretty rough whiplash. The car was totaled as far as insurance goes, but I was still able to drive it.
I remember hearing the doctor talking to Mom across the hall. Something about a spot on the MRI. Something on her brain. I don’t know why– maybe it was the shock of it all– but at the time I didn’t think much of it.
I don’t know how long it was later that I discovered it was a brain tumor. To be honest, I wasn’t shocked. I’d always sort of suspected it. Mom had some pretty severe mood swings as we were growing up — and I don’t say this to disparage her memory in any way, of course, but to give people an insight into certain illnesses. I don’t know if it was the brain tumor that caused these mood swings. It could have been menopause. It could have been the Neurontin she was taking for the neuropathy (well, that DEFINITELY had a lot to do with it, and at one point I told her that and when she stopped taking it, the mood swings definitely became milder.) It could have been depression. It could have been a combination of all of these things.
But I digress… Recently Dad told me he’d found an article in the paper about long-term use of antibiotics causing diabetes. I’ve included a picture of it.
We’ve always suggested that the amount of antibiotics she was prescribed were excessive. Not even just for the Lyme– although she was on them even then for way too long– but even in her day to day life. It seemed like every time she went to the doctor she came home with a prescription for Amoxicillin or Rocephin or Zithromax or free samples of whatever the doctor had lying around waiting for some test dummy to walk through the door.
I don’t want to make this a rant about doctors and their practices. I don’t want to turn this into some advocacy spiel for “healthy living” and “herbal remedies.” That’s not what this is about. I’m not saying all of her doctors were horrible and didn’t deserve their degree. I’m not saying every doctor that prescribed her an antibiotic didn’t know what the hell they were doing. The truth is, she saw so many doctors that they probably had no idea what she was getting from all of them! What I am saying is that I firmly believe the ridiculous amount of antibiotics she was given was a contributing factor in the grand scheme of things. Sure, some things need antibiotics, I’m sure. I had Lyme Disease three times and antibiotics “cured” it every time. I’m lucky that I didn’t end up like Mom (at least not yet.)
There’s two sides to every argument. I’m riding the fence on this one. In her case, she was on too many over too long of a period of time. I don’t want to discourage people from taking things they are prescribed by their doctors, but I want you to stay informed. If you’re seeing more than one doctor, make sure each doctor is aware of what the other one is prescribing. Don’t rely on them to read medical records or notes that state it — tell them yourself. When you get a new prescription, ask how it interacts with other medications you are on. Ask about long-term effects. Ask about any and all contraindications. Speak up. This is your life we’re talking about. Your health.
I intend to spend a lot of time talking about Mom’s illnesses. This is barely the tip of the iceberg. But this is where it all began. I found journals she kept of her symptoms dating back to the early ’90s. I have copies of medical records and bloodwork. I always promised her I’d figure out what wrong with her. I don’t pretend to be a doctor by any means, but one day I hope I can keep my promise somehow. Doing this research is helping me stay sane at this point… And if I can help others from ending up like her in the process, well, then I’d love to do that, too.