Change isn’t always about being loud.

As Lyme Disease Awareness month gets under way, I see thousands of posts a day trying to spread awareness. This has been hugely helpful because I can see what works and what does not. Hint: its not the loudest ones making an impact.

Everyone has their style but is being loud and in your face about information something that draws people? Usually no. To draw people to you, you have to build a human connection, give them something to relate to. While all Lyme Disease awareness is great, if we are tactful we can make a bigger impact.

What drew you into a community you are part of? Think about how you would want new, scary information presented to you. Most awareness for medical conditions is only achieved by ones close to those sick learning more and advocating. Screaming that this disease is deadly and omnipresent, while true, is scary and sends people running.

I think about who cares most about me and didn’t know me first. Our first conversations were about who I am, my hobbies (even if they are on hold), my passions, not about Lyme. I slowly let them in about the seriousness of the disease. With the time they took to get to know me, not just my illness, built a stronger connection and therefore more empathy. Empathy is far stronger than fear.

So to all the amazing advocates out there, I urge you to strengthen your message. Try to look from the outside in. We have created an amazing Lyme community. Now it is time to reach out to those who care about our condition and not to scare them but to bring them to our team to end the epidemic.

Change isn’t always about being loud.

To make a friend, I have to change Lyme Disease

As I struggle to do my taxes, among yet another brutal week of treatment, my credit card transactions tell me something very clear that I pretend doesn’t exist. The transactions read: Doctor, doctor, supplements, doctor, supplements, and so on… 3 years ago it read: My favorite bar, a new restaurant, clothes, crossfit classes, 5k registration… Its not only that my life has become all about my health, its that there is no friendship in my transactions.

Almost ever previous transaction was a socialization with friends. We went to other countries, we worked out together, we tried new foods. I had 2 expenses on my credit cards for dining out with friends for the YEAR. Loosing the people I thought would be my friends forever has been something I try to forget about constantly but it never stays hidden. I don’t consider myself a sick person or a spoonie but as I look over my credit card statements I have nothing to disagree with that labeling.

I very much consider a friendship a two way street and I’m sure some of the burden falls on me. I am not a perfect friend. I just thought my friends would be there for me when I needed them.

At this point, my friends are 90% people who share my illness. They are the ones who understand the suffering without saying it, the ones who let me cancel plans without an interrogation, who understand why I am broke and struggling, because they unfortunately get it because they live it too.

When I sit pondering how to raise awareness for Lyme Disease, I’m at such a loss because even my friends don’t care. How am I supposed to rally strangers if I can’t even rally those who were my friends? I have no doubt I will return to an at least functional level one day but I frequently worry about what my friendships will be like. There’s no logic in returning to friendships that weren’t there for you but how do you find the ride or die friends? I feel that having all friends who are struggling with Lyme gives you a narrowed view but at the same time how do you pretend to be normal when you arnt? How do you explain what you have been through without looks of pity or disregard?

As I finish counting transactions, the answer is still the same, that I have no idea how to maintain relationships with friends through Lyme. Honesty is scary and faking it is insincere.  All I can hope for at this point is that my awareness efforts will some day make a big enough impact to be understood in the way cancer and HIV is now. If they can do it, I can do it. And, no my taxes still are not finished.

To make a friend, I have to change Lyme Disease

All work, zero play

For the past few weeks, it has been rare for me to be more than a few feet from my computer. The amount of work for Lyme Warrior seems to have multiplied over night. I’m struggling to squeeze in my jobs that pay for my treatment.

I usually start my day by pulling my phone out from under my pillow and catching up on anything I’ve missed while sleeping, then to breakfast and I usually work through the rest of the day until 10/11pm only breaking for meals and to let the dog out. Does the 10 minute drive to the post office to drop off orders count as a break? It does to me.

I absolutely know I’m overworking myself but there is so much that needs to be done its been hard to stop. When I take a LW break I then remember my other job tasks I have to do. If only I got paid for my LW hours I would be rolling in it!

I am extremely happy I have been making so much progress with my health. I’m doing short drives, I’m on my feet more…. the downside is I believe I got re-infected recently. I was walking outside and a monster of a horsefly bit me. I wouldn’t have thought much of it except for the red circle that lingered around it for a week. I’ve upped my herbs and gotten back on pulsed antibiotics to combat it. I’m not concerned about it, just not loving the extra herxing from trying to kill the new infection.

Other than that life is just work. Work enough to pay for herbs, try not to fall behind on all the things I need to do to make Lyme Warrior make real change, and try to maintain my sanity in my isolation. I’m very much looking forward to the holiday to be with my family and to hopefully peel myself away from the computer. It may not be ideal but sometimes you just have to put your nose to the grindstone to make things happen.

 

 

All work, zero play

Ozone therapy, Chiropractor, & extended family..

My first ozone therapy, chiropractor appointment, and life on the go.

Monday we left VA for PA for DIV ozone treatment. I chose to come to PA because my family lives in the area and we can stay with them while doing the short commute to the clinic. The first day I was in PA was filled with lots of herxing from my herbals and I was too toxic to get my first round of ozone. I had my doctor appointment anyway and we agreed to start the next day. He also removed more foods to see if they were causing issues. Now with my diet being even more limited, I’m not happy.

The next day I got my first 20ccs of 03 ozone. It was essentially like getting blood work done but it took 10 minutes instead of 2. She got my vein, pushed the 03 in and told me to wait to leave till I felt normal. I felt tightness in my chest and when I spoke or breathed deeply (your not supposed to do this), I would cough. I sat for a bit and left with no real issues. The next day I did the Ozone Sauna. There are many extra fancy things that I didn’t do in the sauna, for my first day I just tried the basics. You are wrapped in the plastic box up to your neck and the inside of the sauna with ozone that varies from normal temp to 113 degrees for a half hour. It was weird to feel semi normal but then to feel beads of sweat rolling down your shoulders and legs. I did get dizzy at one point because I am very heat intolerant but it passed quickly.

Through both of these there was herxing, exhaustion, heavy legs, disorientation, shakes,… the usual. By Friday, I was having a hard time orienting. My horizon was never stable or acting right. I got to my chiropractic appointment and was extremely grumpy. Disorientation & neuro symptoms are by far my most hated Lyme symptom.

I was tempted to walk out of my chiro appt because he was a half hour behind but I’m glad I didn’t. There was one spot on my neck that had always caused me tension for years, even before I even had Lyme but I ignored it. With 3 big cracks, he told me the base of my skull and my collar bone were not in line. Because of this my head was sitting almost an inch too far forward. After the 3 cracks, it was like standing up straight for the first time in my life. I had no idea. He said to follow up next time I was back in the state but that I should be good to go. This is my kind of doctor.

This finished my medical fun for the week and then family came to visit. While I’m here, I’m with my mom, uncle, and two aunts. The last two are very strong polar personalities so I’ll be honest, this isnt a stress free zone. Fortunately, they all have lives and its just me and my uncle hanging out in the house for the remainder of the weekend.  We like to stick to the safe subjects: the house cats, deer migrations in the backyard, and what classic guns hes bought online recently. With my exhaustion, these are the levels of conversation I can handle.

I wish I could say Ozone was totally worth the trip, but I have no idea. Monday I will get another Ozone DIV before I head back to VA. At this point it all seems like the usual up and downs of Lyme. I hope to continue another round in a few weeks but I need to start examining if I can financially afford it. At home ozone treatments might have to be the back up option.

With all thats going on this week, I had hoped to put Lyme Warrior on autopilot, but things never work that way. A few major project issues have surfaced and I am looking forward to down-time next week to sort through the problems I cannot currently solve. Fingers crossed for smooth sailing back to VA and no more unexpected problems till I have the energy to face them 🙂 Stay strong my friends.

Ozone therapy, Chiropractor, & extended family..

Life update – Things are coming.

Sorry for the lack of consistent good blogging. Its been a crazy few weeks for me and its just getting started.

I was going strong today till a herx snuck up on me and knocked me out. I took a few hours off to watch Ink Masters and detox. This was probably best because I leave for Pennsylvania tomorrow for a 36hr trip that I haven’t packed for. I will be doing my initial consult with a new Lyme doctor that I have high expectations for. For anyone following my medical saga, I will be continuing long term antibiotics with Dr. J but adding a new protocol on to that and my small assortment of herbals. I will update more details when I learn them Friday.

I have made some pretty big improvements recently. I’ve been able to stay out for most of the day sometimes with the photo shoot and then rested without huge repercussions. My herxes now seem to come on in intense short spans rather than the long miserable ones. I think this is better? I’m happy to report only one illogical emotional breakdown from symptoms this month so far. With Bartonella treatment coming up, I’m not sure that will hold though.

I am extremely hopefully that with new treatment, soon I will be able to drive myself again and re-claim some independence. For anyone dealing with Lyme, I don’t have to explain how huge this will be.

Till then, thank you so much to everyone who buys Beautycounter from me and buys LW products. Beautycounter sales allow me to get treatment and LW purchases allow me to create and fund larger and larger campaigns to further change. I feel like both are on the verge of some great things. ❤

Life update – Things are coming.

To be a Warrior at your Weakest

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. brene.png

To be a Warrior at your Weakest

#LymeLivesMatter is not okay.

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,

#LymeLivesMatter is not okay.