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.

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.

Delayed Food Allergies – Another Misdiagnosis

At the very beginning of my downhill health slide, I was diagnosed with delayed allergic reactions to foods. Black Pepper, Oregano, Oats, and Rye. What a bummer right? For the past few years, I’ve just avoided these foods assuming the medical field had gotten one thing right. Of course, not so much.

I got a new round of herbs over the holiday. Christmas morning I sat with my family and had a wtf moment as a wave of dizziness washed over me. This is what my delayed allergies feel like. Its like the feeling you get going over a rollercoaster but in your head. You want to pass out and throw up simultaneously. Its brief but truly awful and you feel weird for a while after. So, I call and ask who spiced my herbs? Of course no one did. They don’t need seasoning.

Lyme had invaded my pituitary gland in my brain. The new herb that I had been using had effected this gland and gone off in flashing lights where the Lyme was still living. I had never had allergies. Foods like Black Pepper, Oregano, and Oats stimulate the pituitary causing this neurological reaction they had misdiagnosed as an allergy.

I, for one, am ecstatic. This means that after treating this section of the brain responsible for many of my cortisol and adrenal issues (the pituitary controls most of your hormones) I would be able to have all these delicious foods again seasoned with pepper and oregano! Not to mention, I am sure I will feel a hell of a lot better. I am already planning my 2 month binge into Italian food.

What concerns me is when diagnosed my doctor told me he diagnoses people with delayed allergies almost every day. That means for the 3 years its been since I’ve seen him, he has diagnosed about 1,000 people incorrectly. Its realizations like this that make me panic for all the people who have to go down this road because of doctors being blind to Lyme. I absolutely will be making a call to this doctor and hope that my knowledge is well received. On the positive side, food will be delicious again one day.

Pleasantly faking it

Social media is all about highlighting the moments of your life that are working. However, I still want to be honest and show that Lyme Disease is a awful disease. I’m very frequently torn between putting on a good face and showing how frustrating it actually is. This week has been the hardest ones for a bit now and what is posted is a happy photo.

First I caught a cold that I tried to muscle through, then I started herxing from my cold remedies, and thats when things got ugly. I woke up in one of those anxiety binds where your brain tells you that sitting up or moving 2inches will be the death of you. Most of the morning I spent in ball, only to get up for detoxers. The grip slowly wore off until I remembered an errand that could not be put off and I wound back up. My boyfriend got me through my errand, an issue that would have been a mini disaster without his help so when he ordered pizza later I offered to get it since I didn’t feel like my chest was being slowly crushed anymore.

At the pizza place, they are rude, they don’t have his order, then they do, then they make me wait. As I paced the foyer, I started winding back into my anxiety ball. After 15 minutes I left with the pizza, which I would find out later was the wrong order. I got in the car and cried till I got home because I was so tired of every second of this day being so hard. I had very little control over how I felt, which is one of the things I find hardest to accept about Lyme. I never had anxiety before. I don’t have anxiety. I have Lyme which gives me anxiety.

Another layer of this frustration is that I believed when I finished my antibiotics from Jemsek, I should be mostly better. Ending antibiotics and switching to herbs has proved to me that this is far from the truth. My herxing has been hugely neurological, telling me that the antibiotics did a really poor job getting the bacteria out of my brain. I’m excited to get home for Christmas because there awaits a new stress herbal blend from my favorite herb master. I have high hopes that this will be a tool I can use to fully suppress the unnecessary anxiety. If it wasn’t for the set of herbs I already had in hand today, I would have probably never left my bed.

I went through a fairly miserable day and there is no record of it till now because I don’t know how you show that and still want to be someone others spend time with. 95% of my pre-Lyme friends are gone. My Lyme friends suffer with the same issues and worse so there’s no reason to complain to them. They get it. Drawing the line between honesty and presenting the person you want to be is an issue that I struggled with before Lyme and even more now. No one could air all of their issues all the time or else they would have no friends but where do you cross into faking it?

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.

 

 

One big victory…

Today was a huge step forward for me today in my Lyme recovery. I have not driven a car by myself for any long distance since April 2015. Now 1.5 years later, I made my first solo highway drive for about a hour by myself.

I’ve been staying in Richmond because the isolation of living in the country with my parents quite frankly was driving me insane. I love to visit but after the 2nd week of isolation you start getting a little stir crazy. My Mom & brothers met me part of the way towards Richmond and I was able to drive my car, my cat, and myself home.

It was absolutely not easy. I have a lot of anxieties surrounding driving because of a few bad experiences and general Lyme anxiety. I spent the first hour getting to the car with my stomach in knots trying to think of anything but my symptoms. Fortunately when I got behind the wheel and got on the highway it was one of the most freeing experience I’ve had in a very long time. I have relied on someone to get me places for 1.5 years now. I always had to consider their schedule, time, feelings, opinions on radio choices, temperature gauge….. when I was on the highway alone, there was no one to please but me. To not have to consider someone else was like a weight melting off my body. While considering someone’s choices is easy to do short term, after years it becomes this heavy burden of feeling second best because everything is a constant favor from someone. For one hour, I could put all my preferences first. While this trip was very short, it was fantastic. While this may sound horribly selfish, it reminded me of the wonderful days where I didn’t have to share my choices with my disease.

Hopefully with having my car, I can now get to more events that I had been missing, promote Lyme Warrior more, and in general take care of myself. I am sure tomorrow I will be solidly glued to the couch in recovery from my adventure but it will be worth it. I have my cat back living with me and Lyme Warrior is booming with the awesome new leggings in stock. I know there will be a crash and more low days ahead, but I am defiantly headed up.

Ozone was good, but the doctor was not.

While in Pennsylvania I started hydrocortisone, had a small dose of DIV ozone, and did an ozone sauna. I had intended to do more ozone but the hydrocortisone made me so sick I couldn’t do any more ozone. I had been warned that this was not a good choice but I tried to trust the doctor. By the 5th day on it, I was shaking, dizzy, muscle aches, the usual low adrenal issues I worked so hard to get above. When I asked the doctor why this was happening he said he had no idea. Minor detail this was after I had to sit and wait for him for over an hour when I already had a DIV appointment.

A short version is I’m extremely disappointed in the care I received, especially for the price. I paid hundreds of dollars to get more sick. I will be having a phone consult next week to address the issues with him. I would really like to continue ozone, especially since I paid all his costs to get in his care but I do not want his medical advice anymore. We will see how he handles it.

By Monday, I had to call The Country Store (my favorite amazing herbalists). Charlie gave me 2 great recommendations and I went from almost having a public meltdown over nothing to fine within almost 15 minutes. It seems crystal clear to me that I need to move my care completely to The Country Store. My plan at this point is to finish my last few rounds of Bartonella antibioitics with Jemsek, follow The Country Store’s recommendations, and get some more ozones in if possible. While I think Jemsek’s antibioitic protocol has been essential to my improvement, I think the herbal method of restablizing the body while removing the toxins has been what is giving me the ability to function back. What is most important is that I can count on them. I am used to calling a doctor and they tell me they don’t know what to do to help or making me wait for days, Liz always is there with a suggestion. Every call I’ve ever made to her has resulted in a significant improvement in symptoms if not within hours, within the days it takes her to get more herbs to me. Being able to rely on someone for great care when things are bad is something I cant tell you how important it has been to me.

Yesterday for the first time in years, I drove myself, alone, down to the drug store and back. While this isn’t a big deal to many, this is huge for me. I didn’t feel good, my anxiety from not driving in years was kicking, but I was able to get through it. This is one huge step to getting my independence back. To be able to do minor things like get my own food, pick up my prescriptions, and maybe see my friends again is something I have been dying to get back. I am terrified and can’t wait for my next drive.

Yesterday was also a magical day that many LW projects had major things come together so things are looking up. Back on the right health plan, LW plan, and life plan. So with a fist full of antibioitcs and my side kick, I’m jumping back in. Life full steam ahead! And by full steam I mean nap time!

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.

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.

 

Chronic Beauty

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