May is Lyme disease awareness month!
Even though I’m at the end of the month here, I thought it would be timely to make a post about how lyme affects me. Generally, I don’t really like talking about my symptoms or when I’m sick. I’ve always struggled with sharing my feelings and feeling vulnerable, in fear of disappointing friends and family. But now that I’ve decided to do the 57 mile run in November to raise money for Lyme disease research and awareness, it’s only fair I share a little more about the disease.
I share my symptoms NOT because I want you to feel sorry for me, but because lyme is often viewed as an invisible illness. Myself and many others who struggle with lyme often look perfectly “healthy” on the outside, even though inside our bodies are raging in war. I’m sharing my symptoms because it’s a difficult disease to understand because of it’s complexity, co-infections, and vast ways it affects every single person who’s been bitten.
This is my number one problem of late. I can have anywhere between 3-5 headaches a week and they last ALL day. Usually, I feel the pain building throughout the day like an angry thunderhead, so by the time I get home from work it feels crippling to move (fun!!!!). I have the pleasure of experiencing light and noise sensitivity with these headaches too, so once I feel one coming on, I need to get out of loud environments to lessen the building pain.
Since treatment, my fatigue has definitely improved. I used to hardly be able to handle going to work, and whenever I got home I was so tired I could only lay on the couch and nap until it was time to go to bed. Luckily, now I’m able to workout, go to work, write, see friends and do some house chores without completely destroying myself, but I still take things day to day. I know when I’m overdoing it when I start to have trouble getting out of bed in the morning again, and when I wake up feeling like utter crap. I still have weeks when I feel horrible and can hardly do anything but drive myself to and from work, but luckily these have lessened.
The past two weeks I’ve been struggling with fatigue a lot. I’ve taken this time off from training, and even though taking a step back is EXTREMELY difficult for me, my body feels much better and rested now. Treatment of my fatigue is bundled up in my many supplements and restrictive diet, and I’ve learned with I’m lax with my diet, my fatigue increases significantly.
Ah, joint pain. But this isn’t the only way I experience inflammation. While I do ache periodically in my joints – usually my elbows, wrists, fingers, knees (especially my arthritic knee), and ankles – these aches honestly don’t bother me much. A few years ago, because of inflammation in my scalp, I was diagnosed with diffuse areata alopecia by the Mayo Clinic. Basically, my hair hates me and likes to come out. A lot. While the intense hair loss has lightened up since starting treatment, my hair is still incredibly thin and comes out whenever it pleases. I don’t think I’ll ever have the head of hair I had back in high school/college. The hair loss used to bother me a lot more because I tied my conception of beauty with my long hair, but I know better now.
This really ties into the inflammation, but because my stomach has pained me the most, I decided to give it it’s own section. Before I was diagnosed with lyme, I was seeing doctors for my stomach issues and we believed I could have Crohn’s disease. While my stomach issues are 80% better than last year, they used to be intense. I couldn’t eat a lot of the times, I had horrible lower stomach cramping/pain, and my stomach was constantly upset.
While my blood work did flag for Crohn’s (something to do with the inflammation I came back positive for) all other testing came back negative. I had SO MANY procedures, I can’t even remember what they all were called but I was clean on everything except my endoscopy. During my endoscopy my doctor discovered I have metaplasia (cells changing) in my stomach. This is still something I need to monitor and will most likely have another endoscopy this summer to make sure it’s not worsening.
Because of my digestive issues, I try to stick to a pretty particular diet. I am gluten free (except for the occasional beer every few weeks I can’t seem to stay away from) and mostly dairy-free too (this is new). I don’t really eat much meat anymore either.
Recently I had a KBMO FIT test because of some continued digestive issues and my headaches/fatigue. The test identifies foods likely to cause food sensitivity. Using a blood sample, IgG and complement reactions are measured against 132 foods and additives which cause delayed food sensitivity. Basically, this test was able to tell me which foods I’ve been eating have been causing an immune response in my stomach!
I had a high reaction to whole wheat, gluten and cranberries (seriously, wtf cranberries). A medium response to pears (again, wtf) and coffee – the no coffee has been crippling – and a low response to cow’s milk, rye, green olives, beets, sweet potatoes, cinnamon and pecans. Some of this seems very random to me but for the most part, I’ve been working really hard to take these foods out of my diet. I’m going to try and follow the elimination diet more strictly over the next 4 weeks as I dive back into training for my 57 miler – so we’ll see how that goes.
Reducing inflammation in my stomach is a huge goal for me. When there’s a lot of inflammation there, my body doesn’t really absorb all the nutrients it needs to. I’m had low iron so many times I’ve lost count, but what’s more concerning to me (especially with all my running) is being able to absorb calcium/vitamin D to protect my bones. Anyone who is close to me knows I struggle with stress fractures and have been diagnosed with osteopenia in the past. I’d like to never worry about these things again.
Those are the big symptoms for me. While I do struggle with a few other issues, they have gotten better significantly since I first started treatment:
- Dizziness/balance issues
- Eye floaters
- numbness in my hands
- random skin rashes
And I think that’s a wrap. Even though this is my case, I feel as if every story I read online about Lyme disease is different. And that’s why it’s so important for me to do my charity run in November to raise money for research and awareness. Some of the stories I read are absolutely heartbreaking – lives are forever changed. And these individuals are the ones who motivate me to run more than anything. The easiest way I’ve come to deal with the frustrations of lyme is through motivating myself to try and make a difference for those who have it so much worse than me, those who have struggled for so long just to find an answer.
I don’t view myself as sick anymore. Even though I have these outlasting symptoms, this is the strongest in a long time. My symptoms don’t define me because I know I will eventually conquer them. And more than ever, I want others to be able to conquer Lyme disease as well.
I guess my last note here is kinda a PSA you might not care to hear, but seriously, be aware of ticks when you’re outside this summer. They’re going to be bad this year and you can pick them up in your own backyard. Whenever I’m out running on trails I always stop and check myself after running through any overgrown paths, high grass, or wooded areas. Your pets can pick them up too – I always remember finding ticks on my dog growing up, even though she was protected. Just be careful and protect yourself please!
Feel free to reach out to me if you ever have any questions about my journey with lyme. There’s a contact button on my homepage of the blog.
Thank you for reading – until next time!