|VP & Co-Founder of MLDSE|
Its hard to explain a journey that has lasted a lifetime. As I approach 40 years old and start to inch closer to remission I look back at my chronic illness journey and I am overwhelmed at all the details. I have parts of my life I honestly do not remember. They are black spaces on my timeline. I think because I was in fight or flight for so long my memory decided to hide away some of the uglier, more painful moments making room for new memories of recovery. Also the longer I dig away at my past the more my journey makes sense.
My earliest memories are when my mom was rocking me to sleep. I wasn't in pain or scared. I was at peace. As a kid I remember getting up with so much energy, excitement and hope. But as I grew older it became apparent, I was a sick kid. I recently found out I had strep throat starting at age 5, every year more than once a year. As science as progresses, we have learned more about PANS/PANDAS. How strep bacteria can leave the infected tonsils and go in other places in the body creating a chronic condition and several nasty symptoms. This is only one layer in my complicated story.
Next came sinus headaches, undiagnosed asthma, environmental allergies, fatigue, leg pain, foot pain, constipation, anxiety, depression, nerve pain, hyper focused and hyperactivity. My parents did what they could. They made all of my food from scratch, no food dyes, and most of our food came from our garden. I remember getting our milk from the local farm. I had less tummy troubles eating a more wholesome clean diet. I was homeschooled from grades 3-6th and the less social stress my body seemed to be somewhat calmer. If I had a lot of social stress or pressure my health was worse.
It was at age 12 that my parents decided to move to Long Island, New York to live in my grandfather's house. I had never moved away from Maine and I missed my regular surroundings. I remember my girl friend from Maine came to visit me and we were out walking when I noticed a big red bulls eye on my left arm or leg. I know I asked my mom what it was and I had thought it was a spider's bite. I never gave it a second thought. I had no clue that the tick that bit me contained Lyme, Bartonella, and Babesia. After 11 months in New York, my parents moved back to Maine and my parents marriage split up not long after we arrived home. It was around this point I was diagnosed with Mono and I remember feeling exhausted beyond anything I had ever felt in my life. For 3-4 months I could barely do anything more than sleep, lay down, or rest. Eventually the nasty fatigue lifted some and my mom and I moved to an apartment.
A while later at 13, I remember waking my mom, saying I could barely breath. I had been fighting a nasty cold and I felt like I was breathing through a straw. I ended up in the Emergency Room of the local city Hospital and I happened to get the Head of Pediatrics as my doctor that evening. It was then I was diagnosed with 4 kinds of asthma (allergy induced, bronchial, exercised induced, and viral induced/environmental trigger), my mother was told if my peak flow didn't improve from 100 to near 400 from two breathing treatments I would end up over night in the hospital intubated. I was lucky that I ended up going home on antibiotics, steriods, inhalers, and a referral to an asthma/allergist specialist. The whole time growing up no one believed my mother I had asthma and allergies. Again this is only another layer, no one suspected tick born disease.
I was given allergy shots, my EBV levels, asthma, allergies, were all assessed. I was put on a daily protocol to keep me breathing. I had gone back into public school at 13 and thank goodness I was a bright student because I missed a lot of school. I was chronically sick. There were several times I ended up in the ER with my mom, we had an ER bag we always kept packed and ready to go at a moments notice. I started collecting my ER bracelets and as a chronically sick teenage girl I had certain doctors starting to say I was looking for attention, I was hormonal, it wasn't that bad. Along with this layer was the strep throat that continued until I 16 years old. My mother begged doctors to remove them. It took way too long to have them removed. I would get a head cold, sinus infections, ear infections, strep throat, then a chest cold all at the same time constantly. At a young age I was learning I couldn't trust my health or medical providers. I felt sterio typed. My medical records followed me everywhere.
My freshman year of high school, age 15, I missed 50 days of school. I was in the top 10 of my class out of 250 kids. My mom is a professional teacher and she taught me how to push through a very tough and chronic illness. I would go to the ER the night before get my breathing treatments, meds, assessments, and go to the high school the next morning take my tests and go home to rest. My ER visits usually lasted 3-4 hours. After a while I became numb to the whole process of being severly sick, ending up at the ER, doctors office, or specialists and having to balance school, a teenager, and some sports. I wanted to be normal. But I knew I wasn't like everyone else. At this point my pain tolerance became high because I was constantly suffering. It seemed endless so I went inward. I had a low self esteem.
Finally at 16, I had my tonsils removed. And at 18 I had my first of two surgeries to assess and treat stage 2 endometriosis. I also had four impacted wisdom teeth removed around this time. It wasn't until 19 that my asthma seemed to subside and I could come off all the meds I was put on. Unfortunately around this time I think the tick born illness went deeper into my system causing more neurological issues. Around this time I started blacking out upon standing and my full cardiac workup including EKG, Echo Cardiogram, a heart monitor for a couple days then another for two weeks, all revealed I was fine and they had no clue why I was fainting. I was very paranoid in public around groups of people, my depression was becoming darker, my anxiety hightened, nerve pain was intensifying, and I was going towards isolation. I did graduate in the top ten of my high school class and I was given a small scholarship for college. I enrolled having no clue what my major would be but I thought I had to do something.
As I went on to college and working part time, I was like all the other freshman eating ramen noodle soup, barely sleeping, trying to take extra shifts, by this time I was running on adrenaline. I was socially awkward and I had few friends. The added layer to all of my health issues was being an only child and introvert. I was constantly trying to fit into an extroverts world. It never worked. The stress of college, work, social stress drained me body and soul. I felt like I was always working from a place of empty. I worked as a CNA because as a career sick person I felt I could help people in a compassionate way but I later realized the medical field didn't wasn't the place for me. I graduated with a degree in History and research was easy for me. By the time I graduated college I was 6 weeks pregnant and back in the ER for IV fluids, I lost 15 pounds quickly and I had been married two years by this time. My pregnancy was the first time in my whole life I felt like a normal healthy person especially from 18 weeks until birth. I think being pregnant kept my hormones balanced giving me a break.
When I had my son my body just broke, I had a crying baby that needed me, that I was breastfeeding for the first, three months. I was barely sleeping after giving birth. My pain tolerance was so high delivery wasn't hard to me until transitional labor. I was glad I was able to have him naturally. I was concerned I would have reactions or side affects to the medications for pain relief. I had to be put on antibiotics and given blood after birth because delivery was complicated. But I was lucky I had an amazing midwife who advocated for me. So here I was a mom and I was terrified. I had to check the locks of our apartment door three times each time I closed it. I couldn't stop these OCD tendencies. My anxiety had turned to out right paranoia. Walmart was hell for me. I was embarrassed because I knew this wasn't post partum depression. It didn't have a word for it. It was something worse than that. I kept thinking they were going to tell me I had cancer and I was going to die soon. My body was screaming at me to get help now. So I started researching, I needed answers and my regular PCP was seeing me for all these complaints but missing the mark. At one point they offered depression/anxiety meds which I tried but made me so sleepy, dizzy, foggy, and my vision blurry. I was told that couldn't be the case. Then it was the nurse putting in my chart that I was a "hypochondriac" and I was in the doctor's office again for no medical reason. As my son grew I felt like I was falling apart at a rapid rate. He was almost 3, I was almost 30 and in our new house I thought I could see ghosts, feel them around me, see black blobs in my vision, that people would get in our house and kills us. A part of me knew I was in a critical state and needed someone to believe me. I couldn't pick up my crying son because it arms hurt so badly and they were weak.
After researching the internet, facebook, and other sites, I found the terms "Lyme Disease" and after reading other people stories, symptom lists, and chatting with others online I found a Lyme Literate provider. You've got to understand seeing another doctor was like going through the motions for me. I was waiting to be dismissed, bullied, labeled, assumed, misdiagnosed, mistreated. I had chip on my shoulder. I was so nervous.
I saw my LLND for 3 hours. I was alone since my husband had my young son with him. I didn't want to have to go through my long medical history, I didn't want to reveal how bad my mind was, I was trying to hide how critical things had become. I told my LLND I wanted something with a cure. I didn't want Lyme Disease. I wanted to be done being sick. I had hit my breaking point. And I cried in her office. We sent my blood out for testing and she told me I think you have Lyme Disease. She had me circle all the symptoms I had had in my whole life on a chart of over 150 symptoms. I circled 80%. It was a sobering moment for me. I was being forced out of denial. A lot of people tell me they remember the moment they got their results back, a confirmation that they had lyme disease. I was CDC positive for Lyme Disease from a regular lab and clinically diagnosed with Bartonella and Babesia. I had been misdiagnosed for 17 years. I was beyond angry. I was hopeless. The diagnosis was given and I couldn't wrap my head around it. I started down a very dark hole internally. The first posts on my blog started around the beginning of my treatment that was around 10 years ago now. I was diagnosed with genetic celiac disease after 3 years of lyme treatment at the time of diagnosis I weighed 92 pounds and after a miscarriage and chemical pregnancy a few years later I was diagnosed with MTHFR genetic mutation. I felt like my body was a trap. You will find my photography on this website reflects those emotions.
Now I am in a new phase of my chronically ill journey. I am heading towards remission. I would say I am at 80% towards remission. Nobody gave me a handbook at the beginning of my journey as to how I was suppose to take this all in stride. I've had days I've yelled, screamed, cried, broke things, thrown things, isolated myself away, numb, disassociated, dissensitized, split into two, run away, hurt people, family and friends. When people ask me about my journey I honestly have no clue what to say. How do you explain agony. Words fail. I think that's why I turned to photography to talk for me. To express what words couldn't. Nobody told me remission had its own set of hurdles to overcome. New boundaries to discover and set backs to deal with. I find as I look back its like recovering from brain trauma. I feel like I am two people: healthy Angele and sick Angele. I have always felt people saw either "healthy" Angele when I was sick beyond belief or they did see "sick" Angele and wanted to fix me, push me away or didn't even know what to do with me. I think that's why I'm such an introvert. Rejection from society, medical institutions and personnel, clubs, groups, etc. Our society still doesn't understand how to deal with chronically ill people and still believes so many myths. I think that's why I started this blog. A safe place to let it all out.