My Crazy Autoimmune Adventure

I first want to say that launching this blog is a monumental step forward for me. I’m the girl who fills out all the thank you cards – with lengthy handwritten individualized notes inside each one, carefully addresses each envelope with regard for correct spelling, and never sends them out. I’ve been told numerous times that I’m an excellent communicator, and lord knows I love to write, but I seem to have a block on getting my writing out there. I am absurdly organized and outspoken in other areas of my life, but the most personal spaces are sometimes difficult for me to navigate. I get hung up on criticism and self-doubt. This blog is about overcoming that nonsense and baring my truths for all the world to see. It’s also about overcoming PTSD, anxiety, and autoimmune disease (as I have all three and believe them to be inextricably linked). I can’t say I have officially conquered any of these plagues permanently but I’ve certainly come a long way, and have picked up many degrees, certificates, and useful tools over the years. My goal here is to share these (literal and figurative) recipes, along with my story and what’s currently working for me (and what’s not), in hopes that my experiences will comfort, inspire and help you on your own health journey; or, at the very least, offer validation and reassurance to those who can relate to feeling sick and tired of feeling sick and tired. Be forewarned, this health blog comes with a side of social justice – because you can’t have one without the other. But fear not, this first post is strictly about my own health journey. So, here goes…

I have struggled for my health since birth. I was born with hypoparathyroidism (a fancy way of saying my parathyroid glands weren’t functioning up to snuff), which was causing seizures. They were treating me with Phenobarbital, thinking it was epilepsy, but it turned out (after a month in the hospital, receiving my Last Rites, and doctors telling my parents I wouldn’t survive through the night) that I just needed Calcium, Magnesium and Potassium supplementation. As a child and young adult, I had asthma, severe scoliosis, and chronic strep throat, upper-respiratory infections and bronchitis. There was really never a time that I wasn’t on antibiotics. I also ate a ton of fast food, and drank soda and iced tea almost exclusively. After puberty, I added endometriosis, PCOS (polycystic ovary syndrome), fibroids, endometrial polyps and severe anemia to the mix, just for fun. Shortly after giving birth in 1996, I developed gall stones and pancreatitis and went into complete liver failure. In 1998, I contracted Mono. And because my body was in such rough shape already, it was the worst case of Mono the ER doc. who saw me had ever seen. My throat was swollen shut and in unbelievable pain, my liver and spleen were visible through my skin, and I had a constant migraine. They kept me in the hospital for a couple of days and released me once I could eat again. I never fully recovered, but I eventually went back to work, being a mom, and leading an insanely busy, stressful life.

In 2000, I began having severe autoimmune symptoms and problems with my heart. I also developed kidney stones for the first time. They tested me for everything under the sun and threw several diagnoses at me, but my doctor kept saying “there’s something underlying all of this, I just can’t figure out what it is.” I feverishly studied healing and nutrition and learned all I could about autoimmune disorders. I got certified as a nutritional counselor, changed my diet dramatically, implemented a strict routine, and started each day with yoga, pilates, and a 5-mile power walk (I worked my way up to this. In the beginning all I was capable of was a slow walk up and down my driveway). I got weekly acupuncture and massage treatments (yes, I was incredibly privileged to be able to do this). It took a long time to build up stamina and there were days I lapsed and thought about giving up, but I persevered and got healthier than I’d ever been in my entire life. I began taking Ninjutsu with my older daughter, and trained daily. I became the Office Manager at the dojo and took every class possible, including the weekend-long intensives. My confidence, strength and health were at an all-time high, so I started health coaching – and I loved it! I had found my calling but I wanted more education under my belt.

Life, divorce, homeschooling, and more strange illnesses happened and I didn’t make it back to school until 2010. I was gung-ho! I poured myself into it with every ounce of my being, and had another baby in 2011. I had a complicated pregnancy and birth, but I persevered and kept going (with older child in school and new baby in tow). In 2013, my ailing grandmother came to live with my mom around the corner from me. We shared the responsibility of caring for her in her last year of life. That year was incredibly stressful. My older daughter was 16 and struggling; my little one was in full-blown toddlerdom; I was still in school, living on loans; and my ex-husband was suing me for custody. I made it through, but not unscathed. The autoimmune symptoms were cropping back up again little by little and my reproductive health was in worse shape than ever. But I kept going (and maintained a 4.0 GPA through it all, because my anxiety doesn’t allow me to be anything less than a perfectionist). I built my own degree in Interdisciplinary Studies in Human Development (incorporating Psychology, Sociology, Education and Nutrition) and was part of ALL the honors societies. I was a Teaching Assistant, Research Assistant, and Peer Tutor… While taking three classes and working part-time as an Office Manager (not to mention the daughter in college and the preschooler at home).

By 2016, in the midst of completing my thesis and wrapping up the final projects for the semester, I crashed. My anemia had spiraled out of control and my organs weren’t receiving enough oxygen to function. That summer I had a D&C/hysteroscopy – which resulted in both a massive uterine infection and a very difficult diagnosis. I was placed on high-dose progesterone to ward off the tiny cancer that was forming in my endometrium until I could have it removed. I was extremely lucky; they caught it super early! But the day after I started the progesterone, I broke out in an awful rash all over my face and chest. A couple of weeks later, I had the first of many anaphylactic allergic reactions to something we couldn’t pinpoint, even after undergoing detailed allergy testing. It seemed I was suddenly allergic to EVERYTHING, and nothing at the same time. Sometimes I could tolerate a given food; other times I would immediately start puffing up and breaking out in hives. Benadryl was my saving grace, but it was killing me at the same time.

On February 16, 2017, I underwent a complete hysterectomy/oophorectomy, during which they damaged my urinary tract and I contracted severe antibiotic-resistant infections in multiple organs. It took several months and several follow-up procedures to clear the infections and repair the damage (there is still some existing kidney damage that we’re monitoring consistently). For some of those months, they were pumping the strongest, most broad-spectrum antibiotic on the market directly into my heart. While I was in the hospital, I also contracted the flu – which deeply complicated my already absurdly complex recovery. I was having CT scans, ultrasounds and chest x-rays daily, but the news wasn’t getting better. They had exhausted all options. All I could do was pray. And pray I did. I asked others (religious, spiritual, or not) to send healing vibes for me as well. I was petrified and alone (my whole family was stuck at home with varying illnesses I couldn’t be exposed to, so no one could visit me). I personally believe those prayers/positive thoughts worked! I was on the verge of death when things very suddenly took a turn for the better.

A few days later, at 10:30 pm on a Friday, following a very painful hour-and-a-half long procedure, while I was still incredibly sick and running a fever, in the midst of a snowstorm (we live 45 mins. away from the hospital), while my partner was home tending to my little one – who had a stomach bug, they decided I was well enough to return home (the hospital stay is a whole ‘nother topic for a different day). Once home, I was literally quarantined to my bedroom. The visiting nurses had to come in full-on biohazard gear, double-gloved and all, to care for me. I eventually developed an allergy to the last-last-resort antibiotic (which was prescribed after the last resort antibiotic failed) and had no choice but to stop taking it. The infections had been knocked back at that point, but were still mildly active. They put me on oral Bactrim, which I’m also allergic to, so for those months I was back to Benadryl twice a day. That was exciting!

Come August, I was finally starting to feel like me again. I visited family and close friends who I hadn’t seen for a while. I started hiking and swimming again (only in salt-water pools). Slowly but surely, I was recovering. It seemed that I was fully on the mend. Then I woke up one morning in early September feeling feverish and totally run-down. My body was so stiff and achy I could barely stand. I couldn’t write or type (which is a new-found sense of hell for me, as this is my primary creative outlet and one of my greatest passions and pleasures in life). My fingers and glands were a bit swollen, and I had a slight headache, but no congestion or other symptoms. As the day went on, I started to feel better. I thought it was a fluke; that I must be fighting something and winning. The next morning I awoke to the same symptoms. I tried to make an appointment with my doctor but their phone lines were busy. I eventually got sick of listening to elevator music and hung up. Again I felt better as the day progressed, so again I wrote it off. The next morning, the fever was back… That’s when it clicked: this was Lyme. I called the doctor’s office, waited till someone answered, and scheduled the test. My PCP (primary care physician) agreed that it was likely to be Lyme but didn’t want to prescribe antibiotics till we had confirmation (especially given what I had just been through). The next day, they called…

The test was positive. They sent it for a Western Blot (which is a more detailed test to confirm the results and determine how old the antibodies are to see how long I’d had it). I was fortunate that these antibodies were pretty fresh, so I had only had this bout for a few weeks. But there were also old, preexisting antibodies – meaning I had likely been carrying untreated Lyme around in my body for many years. By the time I started the Doxycycline I had all kinds of new symptoms… the right side of my body had completely locked up and I couldn’t turn my head. I was nauseous and dizzy and had a migraine. I was in agony. Throughout the three-week course of antibiotics, my symptoms continued to progress. I formed ataxia (“…lack of voluntary coordination of muscle movements that can include gait abnormality, speech changes, and abnormalities in eye movements”) and aphasia (“…an inability to formulate language…” Another new-found hell for me… I couldn’t find words when I needed them, and at times I couldn’t even string a slurred sentence together). My vision was blurry, my legs felt like lead, my head constantly pulsated, and I staggered when I walked. My hands were stiff, swollen, numb and tingly. There were times when I slept on the sofa because I couldn’t make it up the stairs to bed. I felt like I was falling apart. My doctor assured me that this was par for the course and might persist for up to 6 months after completing treatment. Thanks, Doc!

It did take months, but the symptoms eventually dissipated (though they never entirely disappeared). I made it through the holidays, and even managed to host 25 people for an awesome Friendsgiving at home (with the help of my mom and the love of the life, Lee). Things were once again looking up… Then the cold set in. First, we all got the flu, then the stomach bugs hit. Like dominoes, we went down one by one, got back up and got knocked back down again. Each time, I would start to do better and then relapse. My immune system just didn’t have the stamina to overcome. Each of the two stomach bugs I got hit with back-to-back last winter took almost a full month to clear completely. But, clear they did. By May of 2018, I was once again beginning to feel like myself. Spring was upon us, and the cabin fever was real. I spent lots of time outdoors and was slowly easing my way back into work and regular routine. June was stressful. My husband is a firefighter and his department was in turmoil. We rallied and petitioned and called a Special Town Meeting; all while my older daughter was visiting from New York for the month and my little one was finishing out the school year.

In early July, we took a family vacation with my in-laws. Did I mention that in the midst of the mayhem in March of 2017, just a couple of days after I was released from the hospital, Lee completely tore apart his knee (trying to open a stuck fire hydrant in a mud pit)? Well, that happened. So 2018 also kicked off with a hefty surgery and lengthy recovery for him. He was still recovering at this point. Nevertheless, we had a blast! And, I threw caution to the wind and ate all kinds of foods I knew I shouldn’t have. I spent most of that week feeling horribly ill. When we got home, it got worse. I was sure I had either managed to contract Lyme again, or this was a relapse, as the symptoms were the same. I made an appointment with my doctor. The Lyme test initially came back positive, but the Western Blot was negative. They said that this doesn’t happen often but can happen if your body is fighting something else. The results showed that I did have a fair number of spirochetes (corkscrew shaped bacteria, like the Borrelia burgdorferi that causes Lyme disease) in my body, but not enough to meet the threshold for diagnosing Lyme. After conducting extensive research, I am fairly certain that this is Lyme, in part, and that I’ve had it since 1989 – when I was first bitten by a deer tick and suspected to have it but only given a one-week course of antibiotics to treat it.

Since August, I’ve been going back and forth to the doctor, having regular labs done, seeing specialist after specialist, and collecting diagnoses like baseball cards. The overall understanding of what’s happening is that I now have multiple systemic autoimmune disorders that are affecting all of my organs and connective tissue. Essentially, my immune system was so overwhelmed by the barrage of infections and antibiotics that it went into overdrive and began attacking EVERYTHING. I have been working so hard to beat this thing but am still pretty sick at this point. I have LOTS of ups and downs, and am still figuring out what works for my unique body chemistry. I am so very grateful to my beautiful community for being so understanding, accommodating and flexible as I learn to adjust to this new normal. I have complete faith that I will be able to bring myself out of this. As the meme says, my track record for surviving thus far is 100%. The last two years have been all about learning to slow down and be gentler with myself and others, and healing. This year is about getting back on top, ditching self-doubt, and processing trauma. I have joined a chorus, been writing more than ever, and am exploring new creative ways of expressing myself. 2019 shall forever be known as the year I found my voice. Thanks for listening.

2 thoughts on “My Crazy Autoimmune Adventure

  1. You’ve had quite the share of obstacles in your life on many levels, and handled them with grace and gratitude. You’re a survivor and inspiring in your effort to want to help others navigate their own journey in life. Thank you for sharing your voice, I am so proud of you my friend.

    Like

Leave a Reply

Fill in your details below or click an icon to log in:

WordPress.com Logo

You are commenting using your WordPress.com account. Log Out /  Change )

Google photo

You are commenting using your Google account. Log Out /  Change )

Twitter picture

You are commenting using your Twitter account. Log Out /  Change )

Facebook photo

You are commenting using your Facebook account. Log Out /  Change )

Connecting to %s