With the month of May coming to a close, so does the official Lyme Disease Awareness month. Ticks, however, spread Lyme throughout the year, unknowingly infecting thousands before the end of summer.
And this is what makes Lyme Awareness so important for everyone!
Unfortunately, a large percentage of those infected will not get a proper diagnosis right away, or receive adequate treatment to swiftly cure their illness. This is largely due to insensitive testing as a first line of defense, difficult to meet diagnostic criteria and flawed treatment guidelines set forth by the IDSA. It is these guidelines that most doctors in America follow.
I will be showing a screening of the award winning Lyme Disease documentary called Under Our Skin.This movie details exactly why the silent epidemic of Chronic Lyme is so controversial, and uncovers the harsh reality that most doctors are not equipped with the correct knowledge to effectively diagnose or treat this rapidly growing condition.
Listen to a brief description of my story with Chronic Lyme in this localKSFY news broadcast, and hear a short clip about the screening event on Hub City Radio under the May 18th air date.
If you are in the Aberdeen area I encourage you to come by and watch the movie with us!
Maybe you could take some free lessons from Dr. Phil on this thing called objective interviewing.
I will not be reposting 20/20′s video interview of the teenage lyme patient, Elaina, who apparently is so ill she sometimes speaks with a seemingly Russian accent. I can’t say she is faking, because we (people in the Lyme world) all know that this disease manifests itself in many different ways, both physically and psychologically, that have yet to be explained.
My personal opinion….
It’s possible Lyme and/or Bartonella are affecting her brain to such a degree that it can affect her speech. In an online Lyme support group on Facebook, one of the members mentioned they sometimes get such a dry mouth that they can’t properly pronounce their words. I also take into consideration the fact that she is a mere 16 years old. She’s still a child!
What is really disturbing and disappointing about this 20/20 piece is that the interview was grouped in with other medical mysteries, 2 of which seemed to be due to mental or behavioral imbalances.
Yes, Lyme and co-infections are mysterious, but they are NOT rare! Unless you count the fastest growing epidemic since HIV, second only to Hepatitis C, rare…well, then I’d say you have a problem with gauging reality or blindly following people who state otherwise.
I’m sorry, but the lady that eats rocks is simply NOT in the same category as Lyme, mysterious or not. That lady has some serious mental and emotional issues, with her physical problems being a result of her mental/emotional state. (i.e. eating rocks!)
People with Lyme and co’s who have severe mental and emotional imbalances are often a result of a physical infestation of infection. Meaning their mental/behavioral issues minimize as pathogen treatment progresses. I have confidence that as Elaina’s treatment moves forward, she will have clearer cognitive abilities.
And, at the end of the day, why was 20/20 focusing on her freakin’ accent!? She was having visible seizures, she was frail and thin, it was obvious she was NOT well! Physically, mentally, the whole dumb deal. It’s sad that 20/20 had to focus on the fact that people always think “we” are lying.
Elaina was not the typical Lyme case. I feel 20/20 found one of the most severe and bizarre cases on YouTube and tried to follow in Dr. Phil’s footsteps, failing miserably, might I add. But, if nothing else, it gets people talking. Little by little the misrepresentations and stereotypes of Lyme Disease will become less and less.
One thing the Lyme Community is not, is scared to voice their opinions. I’m positive 20/20 will get an earful about their inability to find a typical lyme case and report objectively.
I believe it airs 10 pm EDT but airing times vary, check your local listings.
Let’s hope 20/20 doesn’t squander this opportunity to get the truth on Lyme to the possible millions of viewers watching tonight.
With Dr. Phil’s 15 minute segment, Deadly Consequences, last month being his HIGHEST rated show in ten years, you can be sure this special from 20/20 will be just as high, if not higher.
As some people know, and many people don’t know, May is the grand Lyme Awareness Month.
Why?
I suppose because this is usually when the Lyme causing ticks come out to play. With the mild Midwest winter we’ve had, the ticks have been roaming around since the beginning of April. I suited up to meet and great them as I headed into the grass and wooded areas where some of my dad and my favorite asparagus patches grow in the country.
With a great asparagus season comes a horrid tick season.
The best prevention of Lyme infection is to not get bit in the first place. I know it’s general knowledge that Lyme and co-infections can only be carried in a deer tick, but I believe this to be a myth. In my humble opinion, it’s not a wild accusation to say anything sucking blood as their main meal could be a carrier of a plethora of diseases (especially blood borne infections).
I’ve never liked ticks, or bugs of any kind. They’re not exactly the snuggly type creature you want to cuddle up with at night. Since my diagnosis, asparagus hunting has been paired with even more preventative rituals:
1. Wear light colored clothing
You can’t see a dark tick on your dark clothing. Duh! If you can’t see it, the more chance you give the sucker to crawl around until they find a hot spot to sink into. Word has it that they actually crawl around for a solid 12-24 hours before they find a “suitable” feeding area. Though, I don’t know this is true. The wood tick crawling on my dad since 2 hours ago had already started to attach itself to him.
2. Wear tight clothes If you can get away with not looking like doofus with skinny jeans and a tight shirt, do that. If you must wear baggy clothes, tuck your pant legs into your socks. You will probably look even more ridiculous like this. If it is absolutely unbearable for you, just hike your socks up as high as possible (with your jeans over them) and throw on some tight rubber bands around your ankles.
3. Put A Cap On It
Hair is a favorite hiding place. Keep them out of your hair by keeping your scalp covered.
4. Spray Yourself If you can handle the strong insect and tick repellents, spray it over your clothes. I personally would never spray some of that crap (especially DEET) onto my skin directly. I sprayed my shoes with OFF and it seemed to help keep ticks off my feet. Next time I think I’ll spray my pants as well because I found 5 creeping up my legs.
5. Check Yourself Before you wreck yourself! Seriously though, when you get back in from the outdoors, check yourself over thoroughly. Check out your kids, your spouse. Ask someone to check over you. Tick bites are often not painful because when they dig in they simultaneously inject the entry wound with a natural number. And with deer ticks, they can be the size of a pinhead, so don’t think you’re going to find them without doing some serious combing. Even then, with ticks that size, it’s likely you won’t find them. Take a hot shower, brush your hair if you have hair, wash the clothes you wore in hot water and dry for an hour with high heat. Ticks can withstand a hot wash, but NOT a hot dryer.
There may be other precautionary measures you can take, but I’m tired for now and my skin feels like its crawling just thinking about ticks. If you follow all of the rules I’ve listed to prevent ticks from using you like an endless buffet, you too can be Funky Glamourous. Or just nerdy.
Like my dad and me
For a reason I will never understand, my dad is a tick magnet. He pulled over 12 ticks from his body. Not sure what they see in him….
In closing, the outdoors, while filled with gross disease ridden creatures, is worth forging into with fearlessness in exchange for all of the beauty. Call me country, but there is nothing like fresh picked wild asparagus on what feels like a warm summer night, in May!
This is a long one. I try to keep things short and sweet but I’ve had a lot on my mind lately. These two weeks proved to be a bigger challenge than just working 40 hours. For the women out there with Lyme and co-infections, you know how challenging your cycle can be with the added impact from Lyme. We all have our varying ailments when it comes to how our cycle affects us. For some reason, of which I don’t care to research right now, Lyme wreaks havoc on our hormones. Even if I knew why or cared to research why and share with you, it’s not the focal point of today’s post.
What happened these couple of weeks is hard for me to even wrap my brain around at this point, but what I do know, it was full of intense feelings, too many for me to fully explain or share right now, feelings that I have been avoiding for a very long time.
Now, I know a week before my period I am usually emotional, irritable, tired and pain is magnified. I know it, every month it’s like clock work. The warning signs are all there and somehow it still manages to surprise me every month no matter how prepared I am. This was one of those weeks. On top of the full schedule at work, I started a new exercise and treatment routine last week. I went up to full work outs 3 days a week and walking 3 days, plus 2 treatments daily, alternating between sauna, LymphStar and epsom baths. I was doing great at sticking with everything, it felt good to be able to accomplish so much, even more than a “regular” person does. But me, I want more. I want to be able to do more. In fact, I don’t even want to be working a 9-5. I feel like there is something else I’m meant to do, and I have no idea what on earth that is yet. So I added even more pressure upon myself, to use every minute I have to read, learn, try new things, paint, I never gave my mind a break, except for the few minutes in the morning and night that I tried to clear my head to work on some mantras.
I’m alone most of my time, but I don’t ever feel alone. I’ve always been too busy and connected to people to feel alone, until times like these where everything kind of crumbles into a big mess that I don’t feel like sweeping up again. Tears try creeping back up into my eyes even recalling. I was brought to my knees this morning in complete cluelessness, with nothing left to ask but Why. It wasn’t a frustrated Why, not a mad Why, it was a Why that is only asked after exhausting every possible option you thought would help making things better. A Why that gets asked when it feels like there is nothing else left to do but give up, again.
And I knew how I got here. I always think I don’t know, but I do. I wasn’t listening to me. I was busting work out like a machine, giving my mind to my job, my treatments, my work outs, everything else but just me, my voice. I’ve been doing it for my whole life. But even sitting and enjoying the simple stuff was on my list of things to do to get better. Going out in the country to find a bird I just wanted to see, a ride on a dirt country road for no reason other than to feel the breeze, simple stuff. It helped for a little while, and then my mind was right back to work on doing anything but relax. I was so busy and overwhelmed I realized I forgot what I was doing all of this for. I actually wondered if I ever even figured out why I was doing any of this at all. Being a machine is so much easier. Its comfort only offered by a devil. Asking yourself the hard questions in life and surrendering to your feelings is never easy. Intuition, that voice that some people call God, their higher selves, the Universe, that’s always what I’m second guessing. Why is it we hardly ever second guess the devils that speak to us daily in our lives? The media, the government, the idiots who act like they have the answers to life packaged in a weight loss work out tape. We are taught to compete against each other, for money, for status, for power, as if there isn’t enough to go around for everyone, to share, as if we aren’t enough as just who we are. We rarely listen to the voices deep within us, and we often never trust it when we are able to make out a few words of what it’s trying to tell us..
Why? What are we so afraid of? The unknown? The instability we think that voice is pushing us into? Is that why we settle for less than what we know we are capable of? Why we listen to what the majority is saying? Is the devils voice louder and more important than our own?
I think I’ve tried everything to get healthy and happy except listen to my own voice and just jump off the ledge its telling me to jump off of. I’ve never trusted I’ll be able to fly. And so whether this episode was induced by the hormones, the stress, the confusion, I have no idea, but I had to talk it out with that voice, with God, with myself, and I just had to break the fuck down and not be afraid of what I think breaking down means. I’ve been breaking down quite frequently as of late, way more than I ever have in my life. I’ve been avoiding it for so long. I have to be strong, because I don’t have anyone to be strong for me. That’s what I told myself, and it’s true to an extent. What I didn’t realize is what the word strong really means. Crying on someone’s shoulder was unacceptable. When I have gotten to the very few points where I’ve let myself do that, soon after my tears have been wiped off my face, it’s right back to being made of stone. I open up, rarely, with only the people closest to me. And even for them, these people I’ve known for years and TRUST with my life, it’s like pulling teeth to get me to open up to talk about how I’m feeling. And crying? Forget about it! It’d be a cold day in Hell before I ever let my guard down enough to cry, especially in front of anyone. I have an image to uphold, I have to be tough to get through work, I have to act like none of this shit called Lyme bothers me, I have to act like I didn’t have emotional issues before I ever manifested Lyme into my life. And I most definitely did manifest this. If you think you haven’t manifested the good along with the bad into your life, well…then I guess you think differently than I do. It was a tough pill to swallow, and it still is at times. But when you’re at the end of your rope, you’ve exhausted every possible easy road you can think of, you have one road that you haven’t travelled yet. The one where you bag up your excuses into a black plastic Hefty and leave that shit at the crossroads. The one where you take the road that leads you to that edge. The one where you have to jump, and trust that you won’t fall. And you won’t fall. Well, maybe if you bring along your bag of excuses, that might weigh you down….
And so I cried. I talked to myself, to God, my angels, to the empty space that carries all of our voices, and I just cried. I asked, demanded, and pleaded to be shown what I’m here for, what am I missing, what can I do that I haven’t done yet. What came out of that, was simple.
Let go. Every day. Of the power I thought was only mine all along. The power I have was given to me, as it has been given to all of us when we come in to this world. If you can learn to surrender to it and let it lead you rather than trying to control it, well then I’d say you’ve mastered something most can’t or choose not to.
It sounds easy enough, but anyone with control issues knows what it feels like to let go of that control. It’s terrifying. How do you give up control to gain it?
Trust.
Trust that everything will work out. That you won’t go broke fighting this illness, that you can achieve you’re most impossible dreams, that you don’t have to be stuck in an unfulfilling 9-5 you’re so out of love with, but you love that paycheck that barely gets you what you really want. Of course you do, it’s got a fancy guarantee on it, it looks safe. When people can’t follow their own dreams or have even failed to realize what they are, they like to make themselves feel better by labeling what you’re trying to achieve as “impossible”. And those, my friends, are what we call the haters, the devils. Brushing them off is easy. What you need to ask yourself is whether you are your own hater. Are you doing things or thinking things that sabotage yourself. Are you feeling guilty about not having enough. Are you subconsciously putting yourself down or settling because you think things can’t get much better. Those are devils that whisper to us daily.
In order for you to reach your fullest potential, you have to first face the truth, your intuition that comes from the same consciousness that created us; no matter how uncomfortable it feels, however scary it is, however foreign. There are people who are led by the comforts the devils of the world offer, and there are those who can’t settle for anything less than the truth. And for those that understand, we know that the quest for truth in this world is an ongoing one. It’s not always sunshine and rainbows. It’s humbleness, it’s admitting when you’re wrong, it’s learning your lessons, realizing you know very little in the big scheme of things as a human, but as a spiritual being…your knowledge is innate.
With that realization, I dried my tears, covered them with a beige foundation and my eyes with a brown smokey liner to mask the battle that just went on inside them, and I suited up for the day with this song in mind……
Set your label maker down and meet each moment like its brand new…..
I had every intention of not writing for a while, but a couple things happened today.
One, someone told me they liked reading my thoughts. That felt good to hear.
And two, I found an amazing example of a human being, on American Idol of all places, and I felt it was important enough to share.
I just got home from a long day that started at 8:00 a.m. I went to help the local co-op that I work at from time to time with unloading the truck. After that and my regular 9-5′er, I went to get a massage/cupped. Yes, I get cupped. You should try it some time. If you don’t know what it is, I recommend you inform yourself. Have a Chinese man cup you…
Anyway, I was fixing dinner and the TV was on. I live with family right now because the amount of money I make at the moment pretty much covers only my medical expenses. One family member in particular is in love with American Idol. I have to say, it was a good episode, and I like reading the performers in general. Not just their performances, them as people.
Tonight, America voted off (by a lack of votes) the most talented performer on the show, and arguably the most talented singer in the nation, Jessica. Those weren’t my words. Randy, one of the judges, said so and I agree. Anyone with any taste can spot her out of the bunch, hands down, as the best. It’s written in her every move, every note, she’s insane with it.
Not only does that bitch have raw talent, she’s humble. She knows she’s good. But she also knows she is just one person and not everyone is going to like her. What makes her even more amazing? She’s a kid! 16 years old. If you are not sure if you have ever seen an awesome example of a human…watch her. We could all take a page from her book.
Now, my (partially completely unrelated) question is… if America can instinctively vote OFF the best performer on the show, why in hell do we allow these same Americans to vote for the leaders of our country????
I vote that Jessica Sanchez should be President. That’s what I vote. And I also vote that all of the people that didn’t vote for Jessica be banished to Russia. It’s large enough to hold everyone and no one really wants to visit.
I soaked in an epsom bath after the show. Massage and cupping knocked a lot of toxins loose and I was feeling a little funky. As I soaked, I thought about all of the things I just wrote about. And then I thought about how I didn’t have time to write. After all, it was nearing 9 pm, my bedtime
But then I was brought back to the example that was set by the tiny singer with lungs of steel. She may have God-given talent, but that bitch worked hard, and she didn’t expect anyone to bow down to her. If she did, she hid it well, and that makes her so much more of a highly evolved soul than most people can even comprehend. When asked what she thought about being voted off, she said, “What happens, happens.”
What does this have to do with health, or Lyme for that matter? I don’t know, I guess there is no relation. It’s just feel good life stuff. We all need a little motivation on our paths. We can’t all be singers like her, but we can all be pretty damn cool human beings that work hard for what we want and never give up, no matter how many people “vote” against you.
So that’s what I’m going to do. Not just because she did it, but because being lazy isn’t in my blood. Watching her reminded me of just that.
At the time I started this 30 day challenge, I needed something to push me to do SOMEthing. ANYthing other than what I was doing. I was working full time, if not overtime, and trying to take over the world in my spare time. While this may not sound like much to the average person, it is for someone recovering from chronic Lyme.
I was a solid couple months into returning to full time work, and I realized I was surviving on pain killers and coffee, much like how I survived in the beginning of my health decline out in California. In 2004-2005 I worked full time and went to school 4 hours a day. This makes me remember a photo I have of my refrigerator during those years. Inside of it was a couple cases of Redbull and my cat, Bianca. Bianca was alive in the photo, by the way, and not for dinner.
Since, at that time, I had no proper diagnosis, I was convinced that the work and stress had run me down. And apparently, I still thought that way up until recently, even after my diagnosis. So, when I returned to work full time a couple months ago it’s no surprise that subconsciously I was freaking out. I thought that surely to get through the days, Vicodin and caffeine is what I need. It wasn’t then, it isn’t now.
Sure, I found “healthier” versions of caffeine. Instead of sugary energy drinks I got a case of Steaz Zero (zero sugar, zero carbs, zero calories, and a 100 mg of caffeine!). Instead of the 4 Vicodin I was knocking back in one sitting back then, I limited pill popping to 3 a week. So yea, I was doing “better”, that’s what I thought! Except this slowly crept up to 4 painkillers per week, then 5, and instead of helping me feel better, I started feeling worse. More inflammation, more pain, I was all around not happy.
That is why I started forcing myself into this writing challenge. And I’m glad I did. After starting, I soon realized what I needed to change. The only thing that I haven’t done consistently, is stick to something. ONE thing. A work out routine, a creative project, a writing challenge.
With work and sleep taking up 16 hours a day, I’ve decided that right now, the most important thing I can do is stick to a solid work out routine, without quitting, without any excuses. And in order to get through that AND 8 hours of work, I need a certain diet, a certain amount of sleep, and there isn’t a large amount of room for error. I’m still in the beginning transition stages, the most important stage for me.
I hate quitting things I’ve committed to, so I will just say I am postponing/altering my writing schedule so that I can focus all of my energy on this 8 week goal I’ve set for myself.
At the very least, I will still be attempting to write SOMEthing. I am sure my energy will continue to gain in momentum and allow me to write brilliantly after I’ve sleighed dragons all day. But for now, I’ll just throw you SOMEthing, regularly enough. I’ll save the special #HAWMC tags for when I’m either falling off of the wagon or just have the mental capacity to humor these writing prompts.
I WILL FINISH! It just may take me a couple months! Haha…
G’nite folks.
