LymeGoth

When artist Karolyn Gehrig is undergoing treatment for her chronic illness, she doesn't want to feel invisible. So she posts glamorous selfies of herself undergoing medical treatments -- and looking fabulous -- using the hashtag #HospitalGlam. ...

I love this so much.

I've been very quiet, as I kind of predicted I would be. But I really should get back to blogging if my initial purpose is to be served. I want to show that you can live how you want with chronic illness, but that it isn't easy. Balance, if you will.

I've been a bit quiet on the updates the last week or two. Other than being busy, some of that time was spent making one of the hardest decisions anyone with a companion animal has to face...

I'm choosing to post my favorite meme and funny pic of my cat Cricket. It has been a really hard weekend. Cricket wasn't herself wednesday and thursday and was seriously ill friday. We took her to the ER vet. It seems she had a stroke. I took her home and she began wetting herself, unable to stand or eat or reach the litter box.

Friday evening we had to make the decision to put her down. She was about 16 years old. My Cricket, my little friend. I miss her so much more than I could have imagined <3 

Well...off the heals of another busy couple weeks and I'm feeling it. After going out to the TR/ST show last week of course my body was rebelling from dancing but throughout that week my knees were swelling and aching again in their tell tale "you have fucking lyme disease and you aren't on antibiotics, what are you stupid? you're totally letting me get away with this."

annnd nonetheless. I went to my mother's house friday to help out with baby shower decor for my sister's shower next month and stopped off to visit one of my best friends for some socializing that involved staying up talking all night with beers.

Followed by hitting up the infamous zombie prom that Elijah was DJing at. Any excuse to bust out my effects kit early. I had a fairly elaborate glasgow smile and exposed orbital bone planned but only ended up with an hour to do my makeup after dropping Eli off to set up, thanks to hitting a ton of traffic on my way home earlier. 

And sunday arrives and my throat is sore. So I'm like shit I know that that means. Oh-what-a-shock woke up today coughing and sputtering and unable to stay awake more than a few minutes. I had enough waking time to put in sick hours at work and answer an email. Around 7pm I finally got up and was able to stay up to eat something and..tada...write a blog about nothing.

I really do hope someone reading this finds it useful or comforting in some way because as I suspected, I just feel like I'm bitching and moaning.

But if nothing else, I'm more resolved than ever to discuss treatment at my checkup Oct 14th.

God is it frustrating though to have something as simple as a head cold (not that ANYone finds them pleasant) take me out like the flu would for anyone healthy.

Friday we went to Hocico, where Elijah was one of the DJs for the night. So much fun. Saturday was TR/ST playing at voyeur again. We got up front against the stage and danced the whole set like our lives depended on it. Afterward I had sit the rest of the night.

That club is open late as well so I told Elijah to go off and have fun. While I was finding various places to rest, already feeling the ache throughout my body from my super-fun weekend of self destruction, I was approached oh...every 5 minutes by guys asking me why I was by myself, if I had a boyfriend and where he was. I kept assuring them I was fine, just chillin, didn't need company. Some I shouted over the music that I had arthritis or some such oversimplification. 

If I had a dollar for every time that happened that evening, I'd have drank for free that night. It's also always odd when going to a club in the gayborhood doesn't lessen the creepers.

I'm on recover day 2 now and have felt like I have a fever since yesterday (no actual fever though). Hopefully 2 recover days are enough because we really need to do groceries tomorrow and I have band practice in the evening. Never. enough. spoons. Especially when one of your chronic issues is stubbornness and refusing to stop pushing yourself.

Blogging is so foreign to me.

I hope that as I get through my backstory I can gradually write more conversationally and be slightly more interesting. But for the purposes of starting this blog in the first place I think it was important to also put my history.

So more current history. I'm just going to knock this out in one more entry and get up to current events.

I was living in Flemington, NJ. I had a relapse and remission during this time. I was a failed studio musician (damn those gigs that don't pay). I was modeling. I had a small group of friends but didn't socialize much. I was living on my own though, independently as I had wanted to. I was working from home at the job I landed while in college.

Then I met who would become my boyfriend. He was much more social than I was, and I was much more grounded than he was. Otherwise it wasn't at all an opposites attract, we were very much similar despite teasing that we aren't. But over time he brought me out of my shell and I got him taking life a little more seriously. There was a rough beginning, it isn't a fairy tale and I don't pretend it is.

And my illness, I feel, played a role in that. He was choosing between an ex and myself. And honestly, for someone who had never dealt with a chronically ill partner, it was on the con list for me. I had episodes, I would shake and be unresponsive. I would be unable to go out. I would be foggy and forget things.

Over time I can only imagine it became less of an issue. But I was also getting better and more stable in my remission. We would go out a lot though, and I would make sure to have recovery days. Go out...go home, spend a couple days in said home recuperating. 

He got a job in Flemington and moved in. The job transferred him down to the Philadelphia area and when my lease was up I followed. Here I was trying to take on city life again...

He had been DJing and I went to all his gigs. I showed my art once in a while, but I stopped modeling. Not like I didn't keep busy. I ended up joining a band after meeting a very solid circle of people I'm still thankful to call friends now. He and I also started a band. I started a business; I began to make makeup. I had realized that my hope of being a tattoo artist was unrealistic with my physical limitations and the demands of that kind of career so I needed another creative outlet that could potentially grow into something more. I began learning to do makeup.

Last year we bought a house in south Philly. We own a piece of history. Still maintaining two bands, promoting my business, and I've become enough of a makeup artist to make money at it and earn pro accounts with a dozen major companies. I have had my work published in independent digital magazines. Nothing super crazy but still something.

Alas, Lyme doesn't give a shit what you are working on. I was feeling run down more than usual last summer. I knew I was relapsing. It was confirmed the same week we closed on the house.

So here I was, with all this going on, juggling everything I loved doing and everyone I loved being around, working my day job, medical debts like crazy and bought a house because I'm insane...and now I would have to deal with it all in treatment again.

Some start to a new phase of my life.

I haven't gone back on antibiotics yet. I don't want to lose what I've built. I'm getting to the point where I need to do it though. I tried herbal/natural antibiotic and detoxing protocols but they're expensive and of course not covered by any insurance. My insurance isn't great anyway; high deductible plans are great for emergencies but for chronic illness, it's about as good as having no insurance. 

So I'm at a crossroads. I'm on half doses of some of my other medications. I have my next checkup mid October. And I need to decide what to do, where to go from here.

They say if you have your health you don't have anything. Somehow I feel like I have a lot more but it's definitely hard to keep your head up when it's pounding and fuzzy.

And that brings me to the present I suppose. I vended my cosmetic line at a local event saturday after doing makeup thursday and going out that night. I was bedridden sunday and monday. And I'm still feeling a bit off, unable to sleep properly. The headaches I've had constantly for the last two months are ever present, and my body aches like I have a fever and an octogenarian's joints.

Must. Push. Through.

Now picture time, yay! I guess this is my format.

Elijah and I at a theme party in some crazy makeup I did this summer.

Doing makeup for a shoot with Brittney Lorraine and Boss Lady Photography earlier this year.

Performing with SAMARKAND this summer at Asylum13 (Mojo13) in Wilmington. One of our favorite venues; the sound is always on point and the people are the SHIT.

Rockin out at another show at Asylum13 with my other band Theurgist, which has since broken up but some of us reformed into a project we'll be releasing shortly.

The "Lyme" part of that incompetent rheumatologist's business card stuck with me. I began to research. It kept seeming more and more appropriate. I wasn't getting my hopes up, particularly when I read about how many conditions it could imitate or be similar to; but I decided I had to at least pursue the line of treatment with a professional. I was nervous about finding a new doctor, but I read enough to know I needed to find a "lyme literate doctor." Again, I researched and I decided to make an appointment with Dr. Eiras in Jackson, NJ, about an hour from my home. I couldn't drive that kind of distance, so my first year of appointments (spoiler alert) my mom had to accompany me to drive.

Dr Eiras listened. At the very least, this relieved me. She assured me that she wouldn't simply slap Lyme as a diagnosis on me just because her practice had become centered on such patients. Her husband had just passed away from cardiac complications of chronic Lyme. She herself had it, as well as her children. She knew this disease from so many angles. She knew many of the illnesses it imitates as well, such as MS, from seeing so many patients who needed help with the same groupings of symptoms. She ran the appropriate tests, went over my records, listened to what I said.

A few weeks later in October of 2004 I was diagnosed with late stage Lyme disease. She warned it was likely chronic but that we couldn't worry about that yet.

She began conservatively because I expressed my desire to live normally and go through college.

The next two years I was rotated on courses of oral antibiotics, monthly checkups and bloodwork, other medications to treat symptomatically. I continued going to Rutgers; I took naps in my car between classes and went home immediately after my day was finished. Needless to say, my college experience was not including a social life. But I had great professors who helped steer me and I enjoyed my classes, like a true nerd. Midway through my sophomore year, I was in remission.

At this point it was explained to me that Lyme is discussed in terms of remission at that stage because of the nature of spirochetes and their invasions of your own cells, causing auto immune responses, hiding in your own organs...all that good stuff.

I still didn't feel great but I was starting to be able to function and keep on some weight. I looked a little healthier. With my trademark impatience I began to apply to transfer colleges, eventually choosing the New School in Manhattan. I was accepted, as were my credits, and I transferred to begin my junior year there.

I even managed to graduate on time with the transfer and health issues. I got an apartment my senior year with my best friend Erin from back home (mentioned in my last post) who was attending Pace.

Due to continuation of certain symptoms and the trademark pressure points, I was diagnosed with Fibromyalgia during my remission.

But even all of that did not come simply. A matter of months after moving to Manhattan while living in student housing my junior year, I began to get fevers. I about passed out in the atrium at campus, luckily just as my roommate was coming in for her classes. She brought me some orange juice and I made a very difficult, shaky, and hazy subway trip back to our dorm. I slept the rest of that day.

I was relapsing. I had chronic Lyme.

I stuck it out and dealt with it through senior year, resuming treatment. The drain antibiotics take on you is indescribable. Everyone knows it from that bout of strep throat or some other such sickness that leads you into an agonizing 10 days. But it compounds the longer you are on them. And with heavy bacterial loads, you experience Herxheimer reactions--flares of your symptoms due to the toxicity caused by mass die off of bacteria. Throughout senior year I worked on my thesis, went out sparingly with a small group of friends, and continued my treatments hoping for the best. I dated sparingly as well, with my most notable relationship a long distance one where I would visit St Louis for a couple weeks at a time. As winter came I realized I couldn't stay in New York as I hoped once graduation was over with. I gave Erin the news and we decided not to renew our lease in Brooklyn.

My one solace was that I had begun working contract and part time with a company in Delaware that my sister worked for where I could work remotely. From contract to hourly payroll, I worked my way into my department and was informed I was being considered for full time in the fall.

So Erin and I moved back in with our parents after graduation. I was stuck where I started thanks to Lyme. Yet somehow not quite. I had proven people wrong, and I was set up with full time work already that would allow me to avoid going on disability. I began getting more involved in session work as a musician and jamming with friends. I joined a band for a 10-day tour as their bassist (I'd played since high school). After a year I was approaching remission again and moved into my own apartment a town over. By now I was also driving myself to my own appointments, at least.

I even found myself in remission again after a shorter course than the first time. And then relapsed again. But another 6 months later, I had my remission back. This time I caught it early and since I was done with college, had no excuse to keep pushing myself. I was learning when I needed "recovery days" and when I could push myself. It made all the difference.

And that all brings us *almost* to the present. Here's some photos leading from 2009 (definitely more healthy looking than the prom picture...from getting health, my Lyme had gone invisible so to speak).

And there I was, 24 years old and living with Lyme. But still, living.

My uncle recently #tbt me in this photo from 2009 playing Croc Rock in Allentown with Kelsey and the Chaos. You can see my medical ID/medication alert bracelet here.

By now I had also clearly gotten into tattoos; that was my thesis content at the New School. I did an independent major and wrote about women in tattooing. These were my outlets. While living in Flemington after college I also got into modeling, which I did on a part time basis.

The bipartisan bill prioritizes federal research on Lyme and related diseases & gives patients, advocates and physicians a seat at the table.

So, common story once middle school began. My parents split up. I ate my feelings a bit and it made skating more annoying once I had put on some weight. I began getting headaches as well. A lot of them, in addition to joint pain. Skating is a high impact sport, though, and I had many past and ongoing injuries. So probably nothing to worry about.

It wasn't until the summer between 8th grade and high school when something seemed undeniably off. Sluggishness, headaches, pain in my joints and bones...I could write that all off to growing pains, sports, depression and stress, the usual culprits for an adolescent. But then I unintentionally lost 30lbs over the summer.

And it kept coming off.

By my sophomore year of high school I had lost 54lbs. As a medium-boned girl with natural curve to my shape at 5'5 I weighed just 102lbs. And of course I felt worse and worse. My mother at first was concerned I had developed an eating disorder. Eventually I was able to convince her this wasn't the case by ensuring I ate as many of my meals as I could in front of her.

That summer, I had my wisdom teeth out. Standard procedure, no complications...except that I wasn't healing. It was weeks before the bleeding stopped and I felt flu-ish the whole time. When it became hard to breathe, especially upon exertion, we began seeking treatment. My lymph nodes had swollen on both sides of my throat, so my body was definitely working its way through something--we suspected perhaps an enclosed infection from the wisdom teeth surgery.

My ENT decided I needed a biopsy; we had to rule out lymphoma. Even that I couldn't heal from. Though at this point, this was also the beginning of my mistrust of doctors. My surgeon called us the day after my pre-surgery consult asking why I wasn't there...hm. Maybe because my surgery was scheduled for 2 weeks later?

The day came, and I was more unnerved than usual. I was supposed to have a 3-ish day recovery but I knew I wasn't in the greatest condition. I would push it anyway--I HATED missing school because it was stressful to make up the work and I am a massive nerd--been essentially a straight A student my whole life. #nerdgoth. 

He was going to biopsy by stretching the muscles over the lymph node to reach it. He apparently got in there and decided to cut through it instead. I attempted to go back to school after my 3 days, and promptly passed out in the hallway after my second class.

I was out of school for the next 6 weeks.

But my biopsy was NEGATIVE. YAY. But how? I was extremely confused how I could be doing so poorly physically, though relieved I did not have cancer. I had long since quit skating and was skipping gym class on doctor's notes. I ended up getting a study hall instead of gym class my junior and senior year, actually. Not that I minded that part.

We tried a pulmonologist since I had trouble breathing. After I saw in a waiting room with mostly morbidly obese patients on oxygen tanks, he humored me with stress tests but ridiculed me for thinking I could possibly  have respiratory problems being so thin. I burst into tears and he prescribed me an inhaler anyway. Makes sense.

Our next bet due to the joint pain was to try a rheumatologist. His business card and practice said that he specialized in Chronic Fatigue, Fibromyalgia, and Lyme disease. Something would have to click here.

Repeats of every blood test I'd had a million times took place with a rude long-nailed nurse after a brief interview with the doctor. He said it sounded like Fibro or CFS. My mom asked about Lyme, since that was a specialty as well and he said no no, definitely not that. It doesn't fit.

On followup, all my blood tests were normal. He did not test for Lyme. He said I likely had fibromyalgia, though probably "more like CFS." It wasn't until a few years later that I realized how idiotic this guy was to claim the impossibility of any one of those illnesses over another given the amount of overlap. Perhaps he had never heard the MASSIVELY circulated nickname of "the great imitator" assigned to Lyme Disease. I had a "diagnosis" but I felt like it was just, again, to humor an attention seeking teenager. I wasn't given any kind of treatment.

And I did not return there.

Meanwhile, high school was coming to a close. I was becoming less and less functional. I made the painful decision of giving up on my top choice schools and not even applying. I applied to Rutgers; it was local, it was decent with a good reputation, and I could live at my mom's until I could figure out a way to regain my health. It was one of the most discouraging times in my life.

There was more disappointment to come, but not before a little hope...

It's hard to know where to begin. I know I'm adept at writing but unfortunately I am all too aware that it's in a dry academic sort of way, so I'll try to be as narrative as possible. And I do think it makes most sense to tell my story by giving the history...and that would mean let's revisit my childhood. Huzzah!

No complaints in this area, really. There were just many instances where perhaps ignorance of a health threat could have lead me where I am now. All I remember hearing about Lyme was "stop playing in the leaf piles, there are ticks. You don't want Lyme disease." We really only knew about it because we had a dog. Lyme is something dog's get.

I grew up in central NJ in a former farm town turned suburbia. My house butted up against a field and the woods. There were some pretty great bike paths along the edge of the woods and we would often go into the woods looking for various small creatures to fawn over. Those who know about Lyme know what an endemic area NJ as a whole is. You can imagine how I might have contracted it.

In fact...my dog DID get Lyme. We only realized because he became suddenly unable to move. There were definitely ticks pulled off us now and again, not that we knew at the time it's the tiny nymph ones that you can barely see that cause the most havoc.

I went to summer camp only once...and some mystery skin condition afflicted me after that. Who knows. Probably unrelated.

Otherwise I just spent my time roller skating (to the surprise of my friends these days, I was a competitive 'figure' skater...though we called it 'freestyle' in the wheels world). I played music. I began with piano at age 6 because my sister was taking lessons so of course I wanted to as well. Then flute. In 6th grade we discovered the darker side of music and things our parents didn't want us listening to and I became determined to learn guitar. I kept busy and I had no intentions of slowing down. I was known to be strongwilled, stubborn, and precocious. You could not keep me from doing something once my mind was set.

I'm Allison, and I'm horrifically inconsistent when it comes to updating blogs. But the more attention Lyme disease seems to garner the more I wish someone like me had done so when I was younger and going through all the uncertainty and diagnostics, let alone the treatment.

And without relying on "prayer" to get through it. Sorry, it's not for everyone and not all folks find comfort in broadstroked religion.

I'm 28 years old living in the amazing and underrated city of Philadelphia. I identify as a part of various "alternative" scenes. I play in a handful of bands, both singing and playing bass. I started a business in 2012 and learned to do makeup. I work a full time office job, 90% remotely from my home. I have a bachelor's degree and purchased my first home a year ago.

I also have what appears to be an endless list of disorders that can be summed up in one syllable: Lyme.

I have been in poor health more than half of my life because of this insidious little infection, and by the time I was diagnosed, the "Great Imitator" had already made itself a permanent part of my existence.

I have found ways to live with it and still do the things I love and feel like a productive member of society, which is what was the biggest deal to me when I felt like I was losing my ability to be human let alone me.

I wanted to begin blogging about my experiences. I plan to begin (post introduction of course) with the timeline of what happened and how I arrived at a treatment plan in the first place. It is also a personal blog where I hope you will get to know a little about me and what I'm about as an individual. Particularly if you are going through this illness, even in early stages, I hope that my writing will result in you finding a little hope through what I'm putting out there. So if I can manage to keep up with this without beginning to feel too completely narcissistic, I will begin with that history and hopefully add in bits about ongoing health issues I face as someone living with chronic late stage Lyme and its effects. I hope to be able to share with you the highs and the lows, because fuck knows I'm not perfect and constantly battle the rut of negative thinking that you can so often hit when dealing with chronic illness.