Recently Lyme Warrior has launched a campaign called #LymeUncensored. As a person with chronic illness, I am uncomfortable showing my illness. While I am constantly frustrated that people don’t take me seriously because I don’t look sick, I also have a very hard time showing it when I am. I was raised with the mentality of pushing through the hard parts and being strong meant not showing anything that could be perceived as weak. Low moments are allowed but hide it and pull yourself back together.
With Lyme this mentality really hurts us. When we look fine we don’t get sympathy, compassion, understanding. All the things we want but all the things that are hard to see we need. #LymeUncensored aims to show the world our low points so that those unaffected by Lyme will see the hardship is real and how strong we are to live through it.
Anna created and lead this campaign with her photo showing her daily struggle through cleaning her hair in the sink with a port in between exhaustion and the emotional breakdowns Lymies know too well. It takes incredible strength to show this vulnerability. Vulnerability is one of my favorite words. My favorite author Brene Brown taught me not to fear vulnerability but to use to to embrace who you are and how you become better. I encourage every single person to dig deep inside them and find how their vulnerability can help change the world for others and themselves.I encourage anyone who has not read her work to pick it up immediately. Its not about showing sad photos, its about showing your strength in moments where others would quit. Warriors not only keep fighting, we fight back to change the world.
To the people who have told me the Lyme Warrior #LymeLivesMatter campaign is “not okay” here is my open response. I encourage respectful discussion.
First, when you run a company, its a given not everyone will like what you do. I’m okay with that. Lyme Warrior was not meant to be a company that pleases everyone. There are many companies that are about love and connecting through Lyme (Be Kind for Lyme is one of my favorites), Lyme Warrior is not. Lyme Warrior is about fighting back against how hard Lyme is.Putting things out there to make others uncomfortable and create change. Despite being life-changingly ill, broke, abandoned, and still fighting back to make Lyme Life easier for those after us.
Then I want to specifically address the Black Lives Matter complaints. The complaints given to me are:
- Black Lives Matter issues are different from Lyme issues. Yes, that’s why there’s different campaigns.
- White privilege still exists for Lyme patients. This one gets me. The inference being that when two people are put in the same situation, African American people have it worse. That’s like saying people who have HIV/AIDS have it better than people who have Lyme. Comparing and deciding who’s situation is worse is how we create enemies and conflict. Rather than deciding who’s situation is worse, why don’t we just agree none of it should be happening? Suffering for any reason should not be qualified but fought back against.
- It constructs Lyme movement as white. Lyme effects all races, there is no reason why this is a white movement.
- It places movements in competition. Every movement is in competition, vying for news time, funding, awareness, etc. Again, to put us all in competition rather than supporting each other is toxic. There is room for everyone to fight for their movement. My plight is no less important than others and theirs no less than mine.
Essentially my point is there’s many awful things going on in the world today. When people accuse me of being insensitive it implies my problems are not as important as the original campaign.#LymeLivesMatter is targeted at asking our government and doctors to acknowledge our suffering and do something about it, an issue that is obviously important (I won’t get into that rant today). Anna created this campaign to allow Lymies to step up and be vulnerable, showing the world our suffering. For her to put her face out there as the first takes huge bravery and character. To the people who think my campaign is insulting, I urge you to look at Anna’s amazing strength and how it is empowering others to speak out rather than find things to criticize. Lets fight together instead of qualifying injustice. That being said,
It feels like such a crazy week for not having done much… yet.
I am safely in Richmond despite the Lyme bugs trying to take me down. I’m stalking the mail man for Liz’s new herbals that will put the bugs back in their place from their uprising while enjoying my last few days off antibiotics. I have a “top secret” Lyme Warrior project I need to attend in the next 2 weeks so I’m just keeping my fingers crossed for a good health day(s) and the man being able to drive me to them. Some new products are coming for Lyme Warrior and I’m hoping the suppliers can get them to me before I’m on to my next location.
Speaking of locations, I will be in Richmond for the next two weeks but then its back home and then a fast trip to Pennsylvania. I will be starting with a new doctor (more on that later). Then after that I will be headed to Alabama to see my Aunt. Lots of road time for me. September is going to be full of miles.
Between those things I’m still working on raising awareness about safe skin care & cosmetics. This is really a priority for me because it is an important aspect of my health and between the hospital bill a few months ago and multiple private doctors this money tree is tapped. I’m pretty much just pushing forward and hoping it rains money. That happens right?
Being back in the city I used to live in, I’m also trying to see my friends. I have baked cookies so in theory they shall come. Fingers crossed I don’t run into another health disaster that keeps me from them like last time. All that being said, I’m so excited for all the new things happening and totally exhausted at the same time. If others can juggle treatment, detox, friends, businesses, and awareness than so can I! Right after this nap!
I feel like I have not been doing my duty of updating my blog. Its for a good reason, I’m doing better and have less to rant about. Two weeks ago I was cussing out anything in my path and was feeling couchbound-terrible. I took some advice, changed some supplements around and I have been on my feet doing almost normal things for the past week.
I usually went to town with my parents once a week, this week I have been 4 times. I’ve walked through huge stores, I’ve been in the heat, I’ve done 5 squats a day, I’ve left my house for more than 3 hours at a time without feeling like I’m going to pass out and its been amazing.
When my doctors wouldn’t call me back, I reached out to New Leaf and Liz suggested some supplements to me to balance my adrenals and to treat EBV. Within a few days of starting Raw Adrenal and colloidal minerals I felt like someone had breathed life back into me. I’ve been treating with antibiotics for over a year now and finally supporting my adrenals opened the window to seeing how much progress I’ve made in that time. I’ve also started some other herbals to treat EBV and support my nervous system which seems to be helping as well.
While I still have symptoms, I still don’t trust myself to drive, and I know this isnt the end, I’m so ecstatic to feel semi functional again. I’m also going to be making a few more medical changes that come with their sets of issues so theres a lot ahead of me over the next few months. With so much ahead for Lyme Warrior and personally, I have my fingers crossed this lasts.