Things I Wish People Knew About Lyme & A 5 Year Blog-Iversary

06.18.18

Health

Happy Monday, my loves. I suppose one very positive thing about all of the time I will be spending in bed while I heal from Lyme & all of the co-infections is that I will have plenty of time to blog! That’s something I’m excited about.

When I first started my blog it was my happy place where I could share my thoughts and feelings about everything, and just write from my heart about topics that satiated my soul. Over the years my blog has become my career, which I am eternally grateful for, but it definitely changed the dynamics of how therapeutic this space was for me.

I have had so many ebbs and flows with my blog, and times where I barely even wrote blog posts at all because I was so enchanted by podcasting (which I still love but the new-ness has worn off) that writing on the blog didn’t seem multi-faceted enough. What I mean by that is that speaking on the podcast is like having a conversation with you guys, and I felt that writing/reading a full & long blog post isn’t always AS personal… but I think I was wrong about that because it is. And those of you who are here reading can hopefully attest to that!

Anyway, I am so glad to have made my way back to the blog, right where I began, because as I cocoon myself in bed under my cozy sheets with Hudson at my feet and sprawling piles of Lyme-related books all over my bed… there is nothing I am happier to do than blog. There is nothing I am more grateful for than to be able to write my heart out and connect with you guys and heal in bed all at the same time.

5 Year Blog-Iversary & The Spoon Theory!

Shockingly, today is my 5 year blogging anniversary! I started this blog on my niece Isabella’s 10th birthday when we were in Hawaii on our annual Maui trip. Actually, to be more specific I started it when I was stuck at the airport ALONE because my whole family flew back to California without me as my airline ticket was somehow non-existent even though it had been booked along with the rest of my fam. A very Jordan thing to happen & also DIVINE TIMING in it’s truest form… because looking back, it was the exact setup I needed to get quiet and create @theblondevegan Instagram account I had been dreaming up in my head for months.

The blog itself started in August of that year but I still consider June 18th my blog anniversary because the Instagram account is where it all began. This was back when Instagram was new and very under-saturated (not a real term but you know what I mean) so it was extremely easy to grow if you had the passion and dedication to do so. By the time I started the blog itself I had about 25,000 followers, which gave my blog a built-in audience from the day it launched!

I always like to celebrate this special anniversary in one way or another, but today I am truly down for the count. Jonathan and I spent the weekend in Sedona, which was magical and healing and romantic beyond belief. We needed a getaway together after all of my solo trips this year, and this one certainly did not disappoint. He is a saint who was content to relax in bed with me as much as I needed to (which was a lot), but I still pushed myself to get out and about to explore the town and some gorgeous hiking trails and creeks.

The travel day yesterday alone was enough to knock me down today though, as we drove two hours from Sedona to Phoenix, maneuvered through the airport and then flew back to LA, maneuvered through LAX and then drove home… which was about 7-8 hours door to door. That might not sound like a big deal to many of you (and it probably wouldn’t to me either even just 9 months ago) but the energy of it all was a lot for me right now. Pure exhaustion permeates my bones at all times. I mean like laying my head down & semi falling asleep on the airport checking counter kind of exhaustion.

Exploring with my love. Who gets me inside and out and takes the best care of me. Who looks at me a quarter mile into this hike and says, “Do you want to go back?” Because he knows I’m just done. But we still got to enjoy the view. 🙂

In Yolanda Hadid’s amazing book about her battle with Lyme that I have been reading religiously, she talks about the “spoon theory.” The theory is that for people with chronic illness we have a certain amount of “spoons” each day and we have to use them accordingly in order to have enough energy to get through the day. When there are no more spoons left, we have no choice but to rest until the spoons replenish. I like to think of myself as having six spoons per day (although I don’t think you’re supposed to put a number on it… I am a numbers kinda gal) and let’s just say I felt like I used ten spoons on our journey home yesterday. This leaves me very depleted today, so I am conserving my spoons so I have enough energy to go out to dinner with J’s family tonight to celebrate a belated Father’s Day.

Some Thoughts About Lyme //

There is so much I want to share with you guys about Sedona which I will do in an upcoming Loving Lately post. Not like we did anything wild, because I really didn’t have a whole lot of spoons to toss around, but we did find some incredible vegan restaurants and a few stunning trails and creeks and magical crystal shops. More on all of that to come. 🙂

Now that I have known about my diagnosis for just about two weeks it is finally settling in that this is something I have been dealing with for a long time. I have both devoured Yolanda’s book and Ally Hilfiger’s book since my diagnosis and through their journeys I have learned that SO many symptoms I’ve experienced for years and years are exactly the symptoms of Lyme (and exactly the symptoms both of these women live with and bravely share in their stories).

Who knows where I was infected. Was it the Hamptons? Was it on one of the many camping field trips I went on when I was young? Marin Headlands? Nicaragua? Was it something way back when I was little and then I was re-infected by a tick or a flea last year that made everything flare up like crazy? I may never know but in my spiritual quest I have a feeling my subconscious will uncover the answers & share them with me at some point.

I know that my spiritual point of view is not a popular one in parts of the chronic illness community, but I am confident that this amazing TBB tribe & wellness tribe understands what I mean when I say… on a spiritual level, my diagnosis is a gift not only to my own healing journey but also to my awareness & understanding of the depths of human suffering. I am losing many parts of my life on a daily basis. It’s frightening and strange because it feels like I am watching a movie of someone’s life that isn’t mine. It’s also frustrating as all hell because Lyme is still very, very misunderstood so it is very common for an outsider looking in to think, “You’re FINE. Just take some medicine & get on with your life.” If only it were that easy.

There are so many things I wish people knew. And I am not the type to sit around saying that I wish people knew something and not do anything about it. I feel a fire brewing in me deep inside to raise awareness not only for a cure but for people with this disease to simply be understood by their loved ones and others around them. I have talked to many Lyme sufferers over the last few weeks who have far more experience living with Lyme than I do, and many of them say that in a way they wish they were diagnosed with cancer instead of Lyme because at least cancer is understood by the outside world and has a clear goal in mind when treatment begins.

I am not saying I wish I had cancer, because I don’t. I have deep compassion for those suffering from cancer and I totally understand the seriousness of how awful it is. I also want people to understand the seriousness of how awful Lyme is for many who live with it chronically. My story is a lucky one because I was never falsely diagnosed as negative (I would have killed someone) and I still have quite normal brain function (just incredibly scattered) and am able to move my body and run my business and live my life even if in a very low-key and different and subdued way for now.

I am also lucky because even if many people don’t understand the severity of my illness, my family does. My parents have stepped up in the biggest way. They got a place down here so my mom (and dad when he can) can join me for all of my treatments & help me with all the day-to-day things I won’t be able to do for a while. The reason they understand is because they’ve experienced my life with me from day one, so they’ve seen not only how much I’ve struggled with my health but how particularly awful and explainable the last 9 months have been.

I am lucky to have a wonderful partner in life who supports me and cares for me in a way that makes me feel so safe and loved, and so many friends who get me and make a huge effort to be there and make me feel seen and heard.

There are 19383839483 more reasons under the sun why I am very lucky. I will continue to keep all of them in mind as I forge forward in this battle and push up against the sheer difficulty of it all.

The delish food in Sedona made me sooooo very happy, like this cookie dough cup from ChocolaTree!

Things I Wish People Knew //

Since I feel the way I do about how hard it can be for people in my life to understand, I can only imagine what it’s like for other people out there who don’t have supportive families or a blog community to turn to while they’re suffering. For them I want to share the below…

A few things I wish people knew about chronic Lyme are that… you may see a photo of us smiling and out and about, but that may have been the only hour of our day (or week) that we had enough energy to get out of bed. You may see a happy, healthy human on the outside, but on the inside many of us are falling apart and our bodies are in extreme pain and constant fatigue. You may think we are a little scatterbrained and hard to pin down for commitments, but that’s because we are fighting to stay on top of our lives while our brains are infected with Lyme and we have no idea how we’ll feel on any given day. You may see us put on a brave face for our family and friends, but inside we desperately wish more people knew our reality and simply checked in to ask us if we’re okay.

Personally for me, you may think I am sharing a lot about my journey so far to garner sympathy but I am really sharing it to shed light on the harsh reality of Lyme. Yolanda’s book inspired me to no end, because she spoke out about Lyme a few years ago when it was even less understood. She was ridiculed by thousands on national TV and totally bullied by her cast mates for making her symptoms up and even doubted and ultimately abandoned by her then-husband who told her “her sick card was up” after he watched her nearly DIE.

Before I started learning about Lyme (months before I was officially diagnosed because deep down I knew I had it) I knew nothing. Nothing. About this disease. So I am very dedicated to sharing now, and hopefully making it more of a relatable thing because many of you know me as someone happy, healthy, and yes plagued by some health issues but generally you know me as ME.

And I am me. And every day of the week I am getting more and more back to me. I am struggling though, and there are a lot of things I am not going to be able do to this summer and maybe even for the next few years that I thought I would. It makes me very sad and it worries me because I don’t want to let anyone down. But as a wise human in my life told me last week… this is my time to be selfish. I’ve been suffering for far too long. And the true people in my life will always understand that.

So maybe today is not the 5 year blog anniversary shindig I envisioned it would be, but that’s okay. I am perfectly content to conserve my spoons so I can go out with J’s family tonight and also so I can be here in bed sharing with you guys. Life is going to be different for a while and I am embracing it. In a weird way I am looking forward to it, because I know it is exactly what I need.

I am invigorated because this diagnosis has given me answers and a very clear purpose moving forward. I am keeping notes on how I feel every day and all sorts of new developments with my medication and more because the thought of writing a book about this journey fuels me like no other. Yolanda’s and Ally’s books have already touched my life deeply, and if I can do that for just one person out there my life would be made.

That’s what this blog is for too! And there will be lighthearted posts in the near future, those aren’t going anywhere, I just think it’s important to share all of it. The good, the bad, the vulnerable, everything in between.

I love you guys and would love to hear your stories below. Everything you shared with me on my last post touched me deeply. I adore you all and I know we will get through all of this together. P.S. click here to sign up for my newsletter so that you can get my blog posts straight to your inbox. If you used to receive them and you don’t anymore… that’s because there were a lot of glitches along the way but it’s all smooth and working now so YAY, join the tribe. <3