It’s no secret this journey isn’t easy. I’ve been up and down more times than I can count. This photo was taken a few weeks ago when I was horrifically ill – couldn’t breathe, bad tachycardia, stuttering, hobbling around with a non-functional left limb (all the fixings) … I only shared how much I was suffering with a few friends, as there are a select few that really “get it.”
I wanted to post today because life really CAN BE amazing. First of all, every single person I reached out to was so kind. Everyone texted back right away, offered to see me or speak with me. AND I was not only blessed with the kindness of friends, but also with the amazing understanding of a dedicated physician and team of medical staff. I felt seen and heard, and the doctor was able to get me breathing and my heart beating normally again within a day.
My life has also shifted again … for the better : ) I have more energy, which I attribute to the ozone therapy, and I have stabilized. I’m actually going back to work tomorrow! I haven’t had a regular job since 2014, so I’m beyond excited to start. So, I guess this goes to show that when you’re down and out, even though it feels like the ridiculousness is going to last forever, things can get brighter OH SO quickly.
Lyme is a rocky road, but I swear I wouldn’t change my life one bit. My level of gratitude is through the roof, and if I hadn’t become ill I wouldn’t know this level of happiness. Very thankful today.
Continuing to receive IV treatments with UVB twice a week. After infusions I have zombie-level exhaustion, which is apparently normal. I’ve noticed a reduction in pain, and then increased energy the day after treatment. To be honest, it’s hard to see a big difference at this point because of the die-off I still have from other therapies. According to my nurse, in her experience, patients report a gradual increase of “better days.” If you have Lyme, I’m sure you know what she’s referring to : )
For anyone interested in my pharmaceutical/herbal therapy:
Main Antimicrobial/Anti-Fungal agents Doxycycline
Sida Acuta (herbal)
Japanese Knotweed (herbal)
Starting Mepron soon***
Additional supplements/homeopathic are pretty much the same
I haven’t written in a while. A long while. Man! I hit a wall. That’s why. I guess I got tired of detailing my treatments and progress because I realized I was stuck with all of this for longer than a couple of years (as evidenced by my lack of a social life and delicious bottles of merlot in the cupboard). Sickness is a way of life now. It eats with me, sleeps with me, runs and yogas with me, but it’s also my friend in that weird kind of way that an illness can be your buddy (??? I don’t know what I’m saying).
What has happened since I last wrote …
Hmmm. I was bit by a tick again in June 2016. That was just peachy. Wheelchair, oxygen, night sweats … the whole deal. Then I got better. Because that’s what I do. My mom helped a lot with that and a team of amazing health practitioners.
To address questions related to HBOT: I didn’t follow through with long-term treatment. I went in for about 20 dives. I didn’t notice much of a difference. But, really, I should have gone in for about 50-90 dives if I wanted to see something happen to my body.
Right now I’m committed to IV Ozone therapy and UVB (in combination with a slew of drugs and natural treatments). 100% in! I will check back every few weeks or so. I just started, so there isn’t much to report. The nurse that I work with however is my main inspiration. She was disabled and out of work for 13 years due to similar infections. She is now completely in remission. She isn’t symptomatic, works full-time and got her life back completely.
On my list for when I’m better (and have a savings account again):
1. Backpacking in Swiss Alps
2. Van camping through New Zealand
3. Ice hiking in Patagonia
4. Snorkeling in Great Barrier Reef
5. Hostel hopping through Europe
6. Hiking the final leg of the Pacific Crest Trail
Lyme-related depression and anxiety can seem like elusive concepts to people that have never experienced them. I mean, it must be weird to watch a healthy-looking woman not function properly, especially when it seems like she has a choice in the matter.
“Why won’t she just get out of bed and do something? She’s been under the sheets all day.”
“There she goes again … freaking out. She says she can’t breathe, but I’m watching her do it right now.”
“When will she stop worrying about every little thing? She has a great life. She needs to appreciate it more.”
I don’t blame healthy people for not getting me. Sure, it can be frustrating when my illness is not understood, but I can’t negatively judge others for NOT feeling what I feel. That was a confusing sentence. But you get it, right? I can’t blame healthy people for not stepping inside my body and strapping on my nervous system. In fact, I wouldn’t want them to. It sucks in here. A lot.
In an effort to help others understand the wild world of Lyme-related mental illness, I’ve decided to blogcast my story. So, here goes …
The panic came first. Like torrential rain. The sky opened up one day and BOOM. If you’ve ever been in the midst of a scary situation, if you’ve ever been mugged or been dangerously close to falling off a really high cliff, that’s the feeling that flooded my body … except it happened when I was listening to a story in my sixth grade classroom. Nothing situational sparked the fight or flight response. It just appeared out of nowhere. I couldn’t catch my breath, my pulse was racing and I felt like I was spiraling towards a horrific death. When this kind of thing happens you wonder about your sanity. Like if you started hearing voices with no people in front of you, you might ask yourself: Am I okay? Which I did. And the answer was ‘No.’
The torrential rain worsened. I accepted my mental move to storm city with grace, but it was hard. Bouts of disassociation soon followed the panic. I would walk into my own home, visually recognize it, but be unable to feel a connection to it. All of the memories to the space where my family and I resided were in my head, but the feelings weren’t accessible. The comfort I usually got from sprawling out on the couch had suddenly disappeared. It was no longer my couch.
And, unfortunately, the disassociation spread. It spread into my body. I began to look at myself in the mirror and see “just a person.” Not Sarah. It wasn’t me. Like some protagonist in an avant-garde horror film, I wasn’t in my body. In fact, I didn’t know where I was. I just knew I wasn’t where I was supposed to be.
The anxiety and depression crept in during the midst of all this. My chest cavity began to grow a ten pound bowling ball that still sits there today. Carrying around that weight at twelve years old was a difficult adjustment, and sent me to bed frequently. After full days with that “giant, new friend,” I slept. And slept. Sometimes I didn’t want to wake up because it was too hard to do stuff with the bowling ball attached. I frequently prayed to get my life-before-the-ball back. I would try to remember feeling light and free, enjoying myself at social gatherings and after school activities … not struggling through them. I began to worry constantly about stuff I’d never thought about before. I developed phobias about being poisoned, dying of rare diseases, falling off of bridges and burning in airplane crashes. These phobias invaded my dreams that always ended with me awakening in a pool of my own sweat.
I didn’t want anyone to know about my invisible bowling ball, weirdo worrying or torrential panic, so I exerted more and more energy to appear normal. In fact, I tried extra hard to be flirty, goofy and aloof. For a year or so I played the role of “a ditzy girl” in an effort to disguise my pain.
High school played out in a similar way. When my parents discovered what was going on, therapists were introduced, medications were prescribed and I was watched more diligently. I developed a nasty habit of cutting myself in an effort to “feel again.” I wanted to get back into my body so badly. I wanted a ticket home. I hated feeling so disconnected. I wanted to bleed out my pain, or at least mask it with a different, tangible kind. The cutting led to a suicide watch that I tried to explain was completely unnecessary. But, who’s going to listen to someone with an invisible bowling ball growing out of her chest?
My body was so profoundly noisy, I didn’t notice what could have been an incredibly telling symptom of Lyme for a long time. Once I recognized it, I didn’t share it with anyone because I figured it was the true sign of a crazy person. The ants invaded slowly. They crawled up and down my nerves at all hours of the day. They crawled into my head, my heart, my stomach, my arms and legs. I had no idea that what I was feeling was actually nerve irritation from the spirochetes (bacteria that causes Lyme). Instead, I figured I was headed for Nurse Ratched’s ward in One Flew Over the Cuckoo’s Nest. And nobody wants to be HER patient. I didn’t share this symptom with anyone, in fact, until I received my diagnosis at 32 years old. For me, this was the scariest of all symptoms. In the back of my mind I figured admitting to ants crawling all over my body would be what finally got me committed to a psych ward. People feel that kind of stuff when they are schizophrenic or on a bad trip. So I dealt with it.
And I dealt with it. And I dealt with it. I’m lucky that I finally found a medication that muted some of my symptoms in college. But it was definitely a half-mute, like what you do when your girlfriend asks you to turn down the football game. It still helped me to function though: the meds in combination with a kick-ass sense of self-awareness that I cultivated over years of therapy and journaling.
My self-awareness is what helped me navigate through a variety of incorrect diagnoses that got smacked onto my medical record like big ugly stickers at the dentist’s office. Let’s review them, shall we? There was major depressive disorder, generalized anxiety disorder, panic disorder, borderline personality disorder, bipolar II disorder, specific phobia, premenstrual dysphoric disorder, and the ever popular seasonal affective disorder. As you can probably imagine, I’m not big on mental diagnoses anymore. In fact, I try to stay as far away as possible. When doctors give you these kind of diagnoses, be careful because you get a big, fat scarlet “A” scratched across your forehead. It’s a packaged deal. You’ll never go into an office again with “just an ear ache.” You will be the “mentally unstable girl with an ear ache” … so you will be questioned about whether or not what you really feel is ear pain. And you can pretty much apply this situation to any complaint you may have in the future.
So you can imagine how my illness played out. Years of “well it seems like you are under a lot of stress, Ms. Herbert. Have you seen a psychiatrist recently? I have the name of one you’d really like.” Years of symptoms that kept accumulating like dirty cockroaches that I’d sweep under my bed. Years of doctors treating me like “a young woman with a pretty rough past.” Years of crying in exam rooms with no answers. Years of hitting a big. fat. wall. All this, while I was acting as a fantastic breeding ground for Borrelia Burgdorferi that would one day show up clear as fucking day on a blood culture.
My body is now a battle ground. I shove antibiotics, herbs, supplements, homeopathics and other prescription drugs into my mouth on a daily basis. Some of them kill the bacteria, which release toxins and make my mental health much worse. These drugs increase the crawling sensation, the panic, the anxiety and depression. They also turn on a massive fog generator that coats my brain in a thick mist. The mist makes me forget basic words like “spoon” and “umbrella.” It takes away my short-term memory and impairs my long-term memory as well. When the generator is on I can’t read, or follow plot lines on television very well. It obstructs basic knowledge I can usually access like “Where am I going?” or “What am I doing right now?”
It’s like I’m driving a car across the Golden Gate Bridge on the foggiest day of the year. I’m squinting. I’m looking for cues that I’m moving in the right direction and not hitting the vehicle in front of me. I can’t see, but I need to keep trying in order to stay safe.
Sometimes all I want to do is hide under the covers with my bowling ball, my fog generator and my ants. I don’t want to get up and worry about random shit that only happens in nightmares. Sometimes I need to complain about the battle going on inside of me. My internal warrior is incredibly proactive, so advice like “try to appreciate the good things in your life,” or “get up and try to do more stuff” doesn’t feel appropriate or helpful. I’ll never forget when I’d finally mustered up the courage to tell one of my friends in high school about my struggles. She responded with “you’re too pretty to feel that way.” She didn’t know any better … I know. But those words stung. And most Lyme patients have been and will continue to be stung throughout their battles, which is why they might get extra sensitive and angry sometimes.
The most helpful thing you can possibly do is listen. Listen like you mean it, without looking at a clock or chiming in with a story about your friend’s friend that has lupus or cancer. You won’t be able to feel what we feel, but we will love and appreciate every second you spend with your hand on ours focused on what we are saying. And we want to be there for you too. Even on days when we can’t. We want to get out of bed. We want to breathe like normal people. We want to appreciate all of the beautiful things in our lives. It’s just hard sometimes. Because it sucks in here.
My boyfriend and I had one of those nights where the thought of home renovation got us really amped up. We tingled with so much excitement that we cursed Home Depot for not being open at 11:45pm so we could peruse paint samples. This was two weeks ago …
Today I wish we didn’t have that night. The following is a plea to anyone with Lyme NOT to paint your house. Or to take a three week vacation if you really need to paint it so that every last fume has disapated by the time you get home. It doesn’t matter what kind of paint you use … Low VOC, No VOC … It doesn’t matter how many fans you use, windows you open or masks you wear … It will bite you in the ass.
If you read my blog, you know I’ve made progress. You know I’ve reintegrated (somewhat) back into normal society. It got to the point that I almost forgot what intense pain felt like … the bitter pulsing of my body parts twenty-four seven.
Well, I remember now. I remember so well, in fact, that I’m back on the couch with ice packs and a bad attitude. The Irish dance team has returned to my nervous system tapping away atop my most vital nerves, sending vibrations north, south, east and west. It’s a real party. So grab your fiddle. But please don’t paint your house. Even if you think it will look pretty. Because it will. But you will be sick. Okay done.
I’ve become that crazy lady at the mall. The one that overhears your conversation and chimes in. Yes her. She is me. But, why dear God why have I become her?
Today I went shopping for a dress at Anthropologie to wear at an upcoming wedding. I’m not my best after the IV treatment, so I did a lot of “leaning.” I leaned on the clothing racks, on chairs, the walls and the counter at the cash register. Needless to say, I was leaning on the counter when I overheard a discussion about Lyme disease. The woman buying clothes had just been bit by a tick. She was talking about whether or not to go to the doctor. She’d just had a baby and was concerned about antibiotics getting into her breast milk. So, naturally, upon hearing this predicament, I became “the lady.”
I’m not super outgoing so it was a bit painful to interrupt their conversation without knowing the least bit about either of them. I’m sure I turned a nice bright magenta to go perfectly with the pinky golden dress I was buying.
I told her my story. Gave her a bunch of ILADS facts on rates of infection, subpar testing etc. I urged her to go to the doctor. It just so happened the woman working the cash register had a lot to say as well. Her boyfriend had Lyme … So it made me feel less nusto-pants.
From the look on her face … We scared the bajesus out of her. Note to self: Work on your delivery.
Moral of the story (because there always is one) … I’m proud to be the crazy lady at the mall. I’m not going to tattoo a Lyme awareness ribbon on my cleavage or anything, but I will give people the information that no one gave me. I don’t want you to suffer. At all.
And I might buy a green hat … with sparkles … to get into character next time.
I feel that I can safely say stage 1 of my treatment has come to a close. I managed a major recovery. I spent money on a yoga pass a few weeks ago, and have even ventured out on a few hikes on level ground.
That being said, I know I’m not in remission due to the ongoing neurological symptoms I still struggle with, as well as the occasional lung flares.
I had my first IV Rocephin treatment today, followed by a Meyer’s cocktail. I felt fine and dandy until a couple of hours ago. When I herx, all my symptoms come flying back as if I was never rid of them, which can be quite frustrating. My blood pressure is up, nerve and joint pain are at an all time high, in addition to muscle twitching and shortness of breath. I’m staring at the clock with a bunch of ice packs on my chest and arms. To fight Lyme, you have to brace yourself. The bugs don’t go down without a fight!!
Anyone reading this who might be losing hope, please don’t. I’m soooo much better than I was and you will be too. Everyone heals at their own pace. Herxing stinks … It just does … Any way you slice it. But just remember that you have to go down a couple flights of stairs to climb higher than you were before.