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..

How are you liking Rifampin?

4 Days ago I started Rifampin in addition to my other antibiotics. I feel like ripping my own hair out.

It is honestly a luxury to complain about my emotional symptoms more than my physical ones. My heart palpatations have calmed down, my overheating is tolerable, lightheadedness not bad… I don’t feel great, but damn am I irritable.

With so much going on in the last few month I’ve learned to manage the demands of my virtual job, Lyme Warrior, and Beautycounter in addition to travel and family, but now that I’m home and things have slowed down I find myself stewing over the things I’m waiting on or the problems I can’t immediately fix. Maybe it wasn’t a brilliant idea to try to run a company while dealing with illness. I find myself really wishing I had some in-person friends to distract me but its become easier to work all day then to have close friendships while sick. I mostly blame this on not being able to drive.

I find myself closer than I have been in the last 2 years to being better but so disorientingly far from where I thought my life would be. Living on a mountain top with my parents working my butt off and scrounging for money for medical treatment wasn’t really the plan. There is no doubt to me I’m on my way out but maybe the drugs are making my cynical. In not so short, I really am not enjoying Rifampin but I am getting better.

 

How are you liking Rifampin?

Chronic Beauty

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As I crack my eyes open first thing in the morning, I groan. Its another day, a day I don’t feel good, and worse, a day I need to do something. Regardless of the activity there’s always a part of me that is just too sick and tired to do what I need to do. However, today people are waiting on me. I drag my carcass out of bed, make breakfast with my friend, Lydia, who came down to help me. I whine through breakfast and pile myself into her car, arms stacked with supplements and detoxers to get me through the day.

 

We arrive at the studio and I try to pull myself together. We start walking supplies up to the second floor and the planning begins. In comes the photographer, hair stylist, and makeup artists and it takes off. Today is the first day of the Chronic Beauty photo shoot.

 

Chronic Beauty is an idea that came to me one of the millionth times someone commented how good I was looking when I felt like I was dying. I considered the opposite and imagined what I would look like if I looked as sick as I felt and I sure didn’t like that either.

When you have the flu, it is empathetic to tell someone they don’t look good. You are acknowledging their problems. When your illness is chronic, you don’t want to look bad, but you don’t want to look good either. So, I sought 12 women with different chronic conditions to tell their story of what being Chronically Beautiful meant to them.

 

As I was still trying to pull myself together, the day started rolling. Our first model showed up and the shoot began. Hair brushes and make-up brushes were flying while photography equipment was set up. We rolled through the prep and shoot until we stopped to interview our first model and ask her about living with Cerebral Palsy. “I’ve lived with Cerebral Palsy all my life,” she said. When we asked what her symptoms were like, she said she has none. “I don’t have any symptoms but I have to use this chair”. She said referring to her wheelchair. “People treat me well. They are usually willing to help me wherever I go. I work at the Y (YMCA) and I get to help the kids all day. It’s great and people are very supportive.”

I exchanged a glance with Lydia, with the same look of surprise at how opposite this was from our battles with illness. I found her statement of having no symptoms and frequent help completely intriguing. If given the time, I could have talked to her all day but the other models were arriving and the shoot must go on.

The day became a constant flurry of chatter and laughing, all the warm good vibes I had hoped to accomplish bringing all these women together. What was different about the room was this unspoken haze of empathy. No one complained of symptoms or even discussed it for the most part, just a quiet respect for each other and the knowledge that we were all fighting conditions that had changed our lives.

The day was chipper and fun. As always, the amusing wardrobe issues surfaced and having people’s noses tickled by makeup brushes kept us laughing. This was only broken by the times we sat down to interview the women and talk to them honestly about their lives. Many models gave stories I was more familiar with. Conditions that were not obvious and were disbelieved by their doctors, their friends, and sometimes their families. When you hear someone else with a chronic condition say “It’s hard”, it holds an entirely different weight than those words would have meant before I experienced chronic illness myself. I frequently wanted to hug the women speaking because I knew how heavy and hard their experiences have been that have lead them to where they are now. But realized they didn’t need my comfort to be strong and tell their story, all these women are warriors.

As the interviews rolled on, myself and Lydia occasionally looked down to pull the tears out of the edges of our eyes. It wasn’t how unfair the diseases and symptoms were, but the stories of how people treat you and how you have to pull strength from deep inside yourself to keep moving forward when it’s far easier to give up.

I could spend hours telling you about each of these amazing women but you will just have to wait for the calendar and footage. Leaving that day, I felt so humbled being around not only beautiful but some of the strongest women I’ve ever met. I thought, if this is only a few amazing women, I know there are a million other stories out there to be told. I encourage all women to start telling their stories, to be honest that there is almost nothing about illness that is easy. There are more than a few moments where you want to give up and the lows are things that people should never have to experience. It’s each person’s ability to keep overcoming those times of extreme illness and hurt and to continue to give and contribute to the world that I find to be the most amazing part. I hope people will buy these calendars so that they can look at it every day of the year and be inspired to face the issues they are dealing with and find it in themselves to overcome them. This inner strength is Chronic Beauty.

Proceeds from this Calendar and other products benefit research for these conditions.

We are all in this together.

http://lymewarrior.us/shop/chronic-beauty

Chronic Beauty

My Lyme & Autoimmune response

As many of you know, I have been treating with Jemsek Specialty clinic for over a year now. I have made a lot of improvement but as they tell me I will be entering my last round of intense antibiotics and I am still not my normal functional self, I have found myself moving to the belief that antibiotics are not the full solution to Lyme Disease.

I want to make it very clear that I am still an advocate of long term pulsed antibiotics. They have taken my life from couch-bound daily to being able to be functional around the house and having more and more good days going out. That being said, I think there is a large component of Lyme that is the autoimmune systems reaction to Lyme that we don’t understand. Like some people are allergic to foods, it is not that the food is bad but that our systems over react to it. I think the antibiotics have done a great job of killing the invaders but that much of my issues come now from my body being unable to settle back into its normal ways.

I will be finishing my last rounds with Jemsek, I have added in herbals, and I will begin DIV Ozone in October. My intent is to continue to use herbals to kill any invaders that antibiotics did not get while using Ozone and other alternative methods to calm my autoimmune issues. My new doctor is optimistic that I will be able to calm my neurological flares that keep me from driving relatively soon.

While all this treatment has been more expensive than I can afford, I am optimistic that it will all be worth it soon and I can return to a functioning lifestyle where I can do more to bring Lyme awareness and return to my career that has been left for dead over the last two years. I have to admit I am thoroughly exhausted from running from place to place trying to cure this disease and frequently struggling with finances, I feel closer to the end than ever before.

My Lyme & Autoimmune response

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.