Days blend into months and months go by in a flash. I’ve found that I have lost concept of what month it is. August should have been an easy month to keep track of with so many birthdays and anniversaries in our family (six birthdays, two anniversaries). Although this post is meant to be an update about my journey with Lyme, I thought it relevant to tell you about the awesome birthday cake my mom made for me, only because it was so good and also a bit more “Lyme-Diet” friendly!
Years ago our family decided to start celebrating birthdays all as one, a date is picked in August and we have one family celebration so that we don’t end up eating cake more than once per week. I always come up with a crazy request for cake; I follow a strict diet as much as possible but still believe that food should bring us joy and there is a time and place for an indulgence.
For this birthday I found a vegan ‘ice cream’ cake – and it was AMAZING. Normally vegan creamy desserts are made with cashews and coconut milk and while this one contained coconut milk the bulk of the “ice cream” was CAULIFLOWER! I was sold the instant I read this. Vegetables for dessert? Heck yes! I’ve shared the link at the bottom for anyone who is curious about this cauliflower cake. If you know me and how I work in the kitchen you’ll know I love to hide vegetables and beans/lentils in my food. A couple of years back I also made this recipe for chocolate hummus – you can also check it out here
Back to where I started with this post. August ends with my 3rd of three rounds of IV meds with a stronger focus on babesia. I’ve written in the last couple of posts about what brought me back to IV antibiotics this past June and I can say I’ve come a long way from where I was in April/May. But I am also having a decent day as I write this; when I am having a decent day I seem to forget that I have many bad ones still. However bad things got while I was on meds, I am a step forward from where I was 5 months ago.
Am I feeling great? No, not always.
The picture above goes to show how enthusiastic I am about meds these days, and without Stephen’s support every day and being willing and able to hook my IV’s up …. I don’t know how compliant I’d be.
After my first round of IV meds in June we travelled back to DC at the beginning of July. On my week off I had FIVE, that is right – five really good days in a row. This is huge progress. The goal is 10-14 good days in a row while I am off meds (this illustrates that my immune system is back in fighting mode and being relatively symptom free means it is doing its job). At my appointment it was decided I would do two more rounds adding a third week of a new oral antibiotic I hadn’t had before.
After round 2 I had a few not great days. I definitely didn’t continue that five-day trend, which was disappointing and discouraging. On August long weekend we went to a great outdoor wedding. I was already starting to go back downhill on Friday (or maybe it was herxing?) either way babesia symptoms were kicking my butt yet again. The anxiety has been really prominent, which isn’t usual for me – it is a new symptom with the worsening and stronger presence of babesia (I also made this short video about what treating babesia is like).
The morning of the wedding, Saturday, I woke up anxious, feeling like I was gasping for air. This is also a symptom of babesia, which is a parasite that infects the red blood cells, multiplies inside of them and then breaks them open when it releases itself. Broken red blood cells = less oxygen. Typically my O2 sats appear normal on a oximeter, but from time to time they’ll drop down into the low-mid 90’s vs typically being 98-100%.
When I woke up that morning, I ran a litre bag of lactated ringer (used to hydrate and help the body with its own detox processes). I started to get ready for the wedding and ended up needing to take breaks along the way and eventually take an Ativan. Normally I can sit down and spend a couple minutes focusing on taking really big inhales and exhales but I couldn’t deep-breath my way through this one.
The day proceeded like this (photo taken from my Instagram page – you can follow me on Instagram by clicking on the link to the right or at the bottom of the page):
This is what #lymedisease looks like.
We’re pretty good actors. Faking it comes easy with the help of a fancy dress and make-up paired with pain killers.
People ask how your feeling, and I’ve gotten used to telling half-lies and saying “I’m Ok” when I feel like every cell in my body is on fire and violently shaking. I’m really only half there, pushing through a haze. And then people say, “but you look great!” This is #lymelife
At 730 yesterday morning I ran an IV, got ready and attended a beautiful wedding. Babesia takes over and I feel like I’m gasping for air, bringing on and exacerbating anxiety.
We posed for a picture at 4pm, you’d never know I was sick. Then an hour later I ran another IV before the reception.
At 7 pm I start struggling to get through the reception and at 8:45 I had to go back to our tent. If I hadn’t I likely would’ve fallen out of my chair during the speeches.
So you see, you can’t see it. I can be screaming on the inside and everything appears cool as a cucumber on the outside.
As the days crept on I started having some incredibly awful days. I don’t tolerate them as well anymore. When I am in pain and can’t move it makes me cranky. It makes me sad. It feels like I am going in circles. Maybe I am? Who really knows? I feel overall that I’ve been moving slowly forward. My mood changes aren’t discrete to anyone who knows me well. I am so easily overwhelmed and filled with sadness and sometimes anger. Or I just feel lost in my house, I feel busy but I accomplish nothing. I stop and realize I place unrealistic goals on myself (a couple of months ago I wanted to get my new site up and running with an ebook published). With reminders from my husband and one of my truest friends I know I need to step back. An ebook isn’t a priority. My health is; and so is this – I enjoy writing these updates. It is therapeutic for me and if it helps one single person, then I’ve accomplished something huge.
Putting myself first hasn’t been my priority for months and I am working my way back to it. Self care so so darn important and we neglect it so much. For me self care isn’t just taking my meds and eating well, there is a very strong and important emotional/spiritual side to healing as well. A couple of days ago I was given a belated birthday gift, a bracelet with opalite, lava stone and hematite – it was the made with the affirmation “I am protected”. I committed to a 21 day online yoga program (which turned out to be not at all what I expected, but I paid $10 whole dollars for it and I thought even a small investment might hold me more accountable to getting back on my mat regularly). Physical movement is so important, even if I have to crawl – I will. Our bodies need it to move the blood and lymphatic fluid around. Movement alone helps the body detoxify and the more I can mobilize my joints and activate muscles, I will recover sooner and with more strength.
To start I wrote out my top 10 obstacles to putting myself first. With this blog post I am really putting myself out there and showing my vulnerability. When I post on social media it can be deceiving and I want others to know that it is still a struggle no matter what stage of the game your at with your illness. Nothing is easy. No one is perfect.
These were my top 10 obstacles and underneath I listed ways I can overcome them:
1) Financial Stress
– accept generosity
– trust that this WILL workout
2) Lack of discipline
– make a plan and write it out
– 25/5 rule: work 25 minutes, break for 5 to avoid burn out
– accept when I am ill and/or tired and rest without judgement
3) divided attention
– pick one or two priority tasks for the day
– when thoughts come up for other projects, write them down to come back to later
4) not making myself a priority
– write out a morning self care routine and stick with it no matter what
5) feeling overwhelmed
– accept help
– in a moment where I begin to feel anxious or overwhelmed, take 3 minute of deep breathing break
6) wavering motivation
– when thoughts come up for other projects, write them down to come back to later
– try a task for 10 minutes and then stop if I my head and my heart aren’t in it.
7) bad lyme days
– accept these days without judgement or emotion attached to them
– make rest and self care a priority
– adopt a mantra to say to myself when I am feeling guilty for not being productive
– 25/5 rule to avoid burn out
– block out 1 hour in the afternoon to rest/nap/read
9) losing touch with my spiritual side
– incorporate daily mantras into my self care routine
– read daily meditations book
– take three minutes every morning before I start the day to sit in silence
10) time management
– use (even more) lists
– set a routine and follow it on good days
Reflecting on these it is clear I am putting more pressure on myself than I should be. When you become ill and stop working a lot of people begin to feel like they’ve lost purpose. I need to keep reminding myself that my purpose right now is to heal, and if these blogs help others along the way I am accomplishing a lot.
Now, back to the nitty gritty of my life with Lyme and the progress we’re making.
Over the last two days I’ve been getting my things ready for my upcoming phone consult with my Lyme clinic. In doing so I am typing up the calendar of symptoms and realizing it has been a rough eight weeks, filled with a lot of pain – mostly in my joints, but also a ton of swelling in my lymph nodes which are super angry and painful. I continue to have a lot of upper body pain from mid-spine and upward. My bite was on my right shoulder, so maybe it makes a lot of sense that a lot of my daily and stubborn symptoms are in my upper body. Otherwise I have a lot of weakness still where it is hard to sit up and stand up. A couple of weeks ago it was so bad Stephen would have to pick me up and hold me in a standing position until my legs realized their job was to keep me vertical. From there I tried to move one foot forward but still couldn’t so he moved my foot for me. With a few highly assisted steps I began walking on my own, very slowly. The best way to explain it is that my brain and my legs aren’t communicating; I say move and they just don’t listen.
During my consult we’ll discuss what to do next. We might try again to transition to oral antibiotics only, or they may suggest another round to beat up babesia and borrelia one last time before moving to oral meds. I’ve also started to focus in more on changing paths of treatment. When I first got sick I felt traditional medicine was what I needed; I chose a doctor I felt I could put my trust in. My plan had always been to start with antibiotic therapy and move into a natural, holistic treatment path. I hope to talk more about this in October once I know a bit more about the choices I am making and have committed to them. All I want to say right now is that big changes are in the works.
And for those who wanted to know more about this ‘ice cream’ cake… click here for the link
I love comments and suggestions. Please take a second and leave a note, let me know what else you’d like me to write about!