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.

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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

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.

Delayed Food Allergies – Another Misdiagnosis

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?

Pleasantly 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.

 

 

All work, zero play

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.

One big victory…

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.

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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 was good, but the doctor was not.