Lets talk money-why lyme patients fundraise

First, know this, in the Lyme world patients don't go to the doctor and then get billed like when you go to the emergency room.  Lymies can't make payments, can't save the bills for later, can't ignore the bills are there.  These things are only possible when visiting medical professionals in the regular world.  In Lyme World we don't get seen, don't get tests done, don't get medicine without cash up front.

The first few visits to a Lyme Literate Doctor are the most expensive.  The appointments are longer and you have to pay for testing.  Not only this, most of us have to pay to travel.

My first visit, not including costs of travel, $750.
My testing, $1100
My second visit, $500

Then like other Lymies, it's time to begin treatment.
Monthly appointments, $250
Monthly medicine copays, $200
Probiotics and other supplements, $200

Let me add that up for you, $650 a month.  That's only as long as I have insurance.  I won't even begin to discuss medicine costs not covered by insurance.  Ok, maybe I will.  The two meds pictured below are $4000 total if I didn't have insurance.

That's not all.  Lymies often are unable to work.  The most important part to healing is resting and reducing stress.  Physical exertion, stress, and over stimulation can cause worsening symptoms.  Along with this treatment doesn't take months, it takes YEARS!

If that's not enough, very often lyme is found in more then one family member.  Although I am trying to focus on me when I blog, I've warned my family that I will be mentioning them at times.  It is so important for our society to understand the struggles of this disease!

Lyme can be passed on through pregnancy and nursing.  Both of my daughters have multiple symptoms that they have had their entire lives and that are clear indicators of them catching lyme as fetuses. I have spent my years mothering teaching them pain and discomfort is normal and it was their jobs to learn to function despite it.  How would I know any different?  I have been suffering from symptoms my whole life.  They would complain of the same symptoms I had.  I thought everyone felt this way and that we just had to toughen up.  Sad, Sad, Sad, it is inexcusable that they suffer even a little.  I've done a good job, a lot of you have no idea that these beautiful ladies have issues with pain, fatigue, and other symptoms associated with lyme.  So, let's talk the cost of that.  We won't include costs of traveling. 

Initial visit with pediatric lyme litterate doctor, $950x2

Testing:$1000x2

Follow up visits every other month:,$350x2

We will underestimate copays on meds, they aren't as sick as I am, $75x2 

Probiotics and Supplements: $200x2

Feeling overwhelmed yet?  I'm still not done.  The verdict is out as to whether or not lyme is an STD, BUT there is evidence pointing in that direction and some lyme docs will tell you it is.  Either way, the process of searching out a diagnosis for me led to us looking at my husband and many of the symptoms he is plagued with.  His list is ALMOST as long as mine.  In fact, he is where I was at five years ago when looking at symptoms.  We lucked out and found a llmd close to home who takes insurance.  I'm not seeing this doctor because he is unable to treat as aggressively as I need.  He needs to tote the line because he bills insurance and we live in a state that doesn't protect lyme literate doctors from having insurance companies bring them before the medical review board.   We are hoping that we have caught things early enough that a less aggressive approach will be effective.  

So, we will estimate copays for meds and doctors appointments at $100 a month.  

Testing was $250 (we did just the basic lyme test. Any co-infections will be treated based on symptoms)

Probiotics and supplements, $200

Ok, it's time to add it up.  The cost of our family to get life saving treatment is, $1,850 a month.  That is after a down payment (testing and initial appointments) of: $6,400!

This isn't just my family.  This is many families in our community.  So many parents are selling of possessions, downsizing their homes, working multiple jobs, just to keep their children and spouses ALIVE.

This is why we fund-raise.  

Every year our taekwondo studio raises money for a cause.  I bet you can guess what we are raising money for this year!  Not just for my family, but we will help a couple of other families in our community who have multiple family members fighting lyme.  We will do this not just this year, BUT EVERY YEAR!  There are so many great causes, but for me this is personal.  Our government can pay for so many things: welfare, foodstanps, housing, insurance, drug treatment, therapy....I'm not knocking this.  I won't lie, I will be utilizing some of these resources.  My issue is I am guessing many of our society members who are to sick to work for various reasons , have lyme.  Our government is denying chronic lyme exists and states lyme is easy to diagnosis and easy to treat.  I'm living proof of the opposite.  I have been told multiple times in the past twenty years that I don't have lyme.  After shelling out tons of cash I finally get a test back that says I unequivocally have lyme AND coinfections.  There are hundreds of thousands of individuals who know differently then what our government wants us to believe.

So, when you see posts and blogs and fliers concerning lyme fundraisers, give a few dollars.

  The last great thing I want to share with you about lymies is that we ALWAYS GIVE BACK.  We don't just take and take, we turn around and help each other because we are the only ones who have each others back.  Support us, because you may very well find yourself in our shoes some day in the future.  I promise, we will help you.

from despair to elation ~ how I feel now that I have a positive western blot

I can't even begin to express the joy I feel right now.  It was like a weight was lifted off my chest and I could breath again.  Yes, I already had the lyme diagnosis based on symptoms.  Yes, I had proof of the diagnosis based on how I responded to antibiotics.  For what ever reason, having a piece of paper that says POSITIVE gives me a validation that I didn't know I needed.

All the headaches, the fatigue, the lack of motivation, the crazy changing emotions,  the ditziness...cough..I mean the lack of focus, the concentration and memory issues, the difficulty working out, the muscle fatigue and weakness, the dizziness, the vertigo, the sensitivities......I guess you get the point.  There was a legitimate reason as to why I felt this way.

My LLMD (lyme litterate doc) thinks I was infected in childhood.  In the back of my head I thought that as well.  I just didn't say that because I knew for sure I had a funky rash along with joint pain and flu like symptoms in 1993.  If I go back further in my childhood my third grade year stands out in my head.  That was when my migraines started, migraines that originated from neck pain.  In fact, back then the doctor didn't think they were migraines.  They didn't present that way.  The headaches were unique and painful.  So painful I ended up hospitalized at the age of 9.  After a few days of tests I was sent to a psychiatrist.  The psychiatrists didn't find anything of significance wrong with me.  My mom started sending me to a chiropractor after that.  I was so tired of being drug to appointments I just said that the chiropractor was helping.  He may have helped a little, it's hard to tell.  Also at the age of 8 or 9 I had a lot of knee pain.  I had fluid under my knee cap, and my knees would often lock up on me.  Of course all these symptoms would come and go.  At that young age I felt judged.  I felt like others thought I was being a hypochondriac.  Actually as an adult, I have described myself in just that way when talking about how I was when I was young.  I felt so badly about over reacting to these symptoms that I have been less then sympathetic when my own children have complained of various ailments.  I didn't want them to be "hypochondriacs" like I was.  HA! Have I been wrong!  I'm looking at everything differently now.

When my LLMD told me my test results I felt many feelings in just a few seconds.  I cheered with excitement and then immediately started crying, I hate crying so that quickly turned to anger.  Right now I am just full of gratitude.  After all these years of tests for various ailments coming back negative I was finally awarded with a positive test result.  My first positive test felt like the first time I got an A on a difficult subject.  I felt like I finally was an over achiever in the sickness world!  How many times have I gone to the ER for various pain to be sent home with a shrug of the shoulders.  YAY! I HAVE A DISEASE!

The other feelings are there under the surface.  How sad is it that I don't even know what it feels like to be healthy? My husband and children have never known me healthy.  Heck, I don't even know myself healthy!  I've been sick for almost thirty years!  I'm not angry at doctors from my early childhood.  Lyme was only discovered a few years before I became ill.  I am angry about it not being discovered around the time they realized my symptoms COULD be due to lyme.  You know, around 1994 when they first tested me for it.  I can be angry, but honestly, the doctors back then were only doing what the CDC and IDSA recommended.  Unfortunately, the doctors around here are STILL doing what the IDSA recommends.  We need to change those recommendations!

So, right now I will relish the fact that someday in the future I may be able to live the way healthy people live.  I may be able to do things with my family without pain.  I may be able to train and be a better martial artist. I may be able to be more productive in all areas of my life.  I may not be scatter brained any more!  I hope you will all still love me when some of the quirkiness I'm known for is gone!

My LLMD is very optimistic that I will recover at a fast pace.  (fast to lyme standards is still months or years).  I have responded beautifully to the amoxicillian I have been on.  Now it's time for the big guns to be put on board!  I can't wait to start loading on the heavy meds!  I will get through the side affects and HERXING because of my desire to discover what HEALTHY feels like!

I May Not Be Happy, But I Still Have Peace

I've been feeling pretty down the past couple of days.  It may be another way the lyme is manifesting itself as my symptoms slowly worsen.  Or it may be that I'm just down because I have been stuck in my house and away from my life for three months.  Either way, I'm pretty mopey.

I contemplated not blogging, but if I am sharing my experiences I wouldn't be honest if I only discussed things positively.  I do feel sad sometimes, and it's ok that I feel sad.  God created all of our emotions.

Sad or not, I still have hope.  My hope is based on my belief that no matter what, God's will is perfect and all though things that happen to me cause sadness, I still have a peace that God will take care of me.

I have so much to lose.  I feel like I'm dangling on a string of uncertainty.  My hope isn't that God will prevent me from losing what I value, but instead my hope is that if I do lose what I'm holding on to God has something better planned.  I don't mean bigger, I mean better.  For me better is simply fulfilling God's purpose for my life.

Still, right now I feel down.  I tried to go watch my daughter cheer at a basket ball game, but the pain from sitting on the bleachers in the cold gym made me nauseous.  My poor mother-in-law watched the game alone as I spent the game trying not to pass out or throw up. I was with her in body but not in spirit.  Getting out of the building was a challenge.  I decided my mother-in-law and I are a dangerous combination.  We are both at high risk of falling, and neither of us could help the other get around.

At the game I was reminded of what I don't have right now.  I watched as parents socialized and cheered.  I feel like I've been removed from life and am watching, as an outsider, everyone else go on living.  I am stuck in this illness, being left behind as everyone else moves forward.

I also have fear.  Here I am, so sick I can barely meet my most basic needs, and our government denies that my illness even exists.  Laws are slowly changing but it isn't happening fast enough to help me right now.  I have to pay out of pocket for my doctor appointments and needed treatment.  When I feel over come with fear I meditate on how God has supplied my needs so far.  Thanks to donations I have now been able to pay for my first two, most expensive donations.  My bills are up to date as of November.  And the generosity of friends and family helping to meet our basic needs is noted and appreciated.  I promise, when I am well I will pay it forward.

I do plan on getting well.  I just don't know how long it will take or how we will pay for it.  I hate uncertainty.  I know I am growing in my faith through this.  I know God is working in this situation.   I just wish I knew what the plan was.  The uncertainty of whether or not I will be better before my disability runs out is driving me nuts.  I want to plan and be a good steward of what I have but I don't know what I'm suppose to do.

Every morning, I have a quiet time with God.  I pray that He will guide my steps for just today.  I simply say, "God, help me to be able to focus on whatever task it is you want me to accomplish.  Please give me wisdom for how to utilize my time.  Let me know what it is you what me to do TODAY"

That's all I can do.  If I need to sleep...I sleep.  If I am blessed with a relief from my brain fog I try to get some work done.  If my body is having a good day I do some light housework.  If I am feeling motivated to blog, email, text, network....that's what I do.

So, I've laid my soul out there.  Tomorrow I may feel happy and energetic.  Who knows how I will feel from moment to moment.  This is a crazy disease.  I can't plan what I'm going to do in a couple of hours let alone plan for the next day.

The one thing I can, and will, do is to continue to educate everyone whom I have contact with that there are hundreds of thousands of people in our country just like me.  We are all suffering while our government is ignoring us.

a pollutant you may not have thought about

One of the top things Lyme patients spend time focusing on is detoxing. As you enter the Lyme world you are quick to learn the importance of ridding your body of unwanted substances.  We stop eating gluten and sugar.  We worry about mold and heavy metal toxins in our bodies.  There are many reasons for this, but that isn't the focus of my blog today.

I am noticing that there is little discussion in the lyme world on EMF's and how over exposure can cause headaches, pain,  increase the risk for cancer, and cause an abundance of free radicals.

Even before I knew I had lyme I learned that by protecting myself from EMF exposure I had a decrease in symptoms.  

 The National Council of Radiation Protection and Measurement declared that 2 mG is the maximum amount of EMFs that the human body can handle at any one exposure. 

You probably think of this when it comes to microwave ovens that put out 200mg's, but did you know that the blender you use to make those healthy smoothies puts out 220mg's?  Your cell phone that you probably spend a lot of time on staying connected to the world puts out 100mg's.  Your computer puts out 20 and your tablet puts out 10, still well above the recommended 2mgs. 

"When exposed to man-made frequencies, our body absorbs and stores such energy fields. These are unnatural and chaotic electromagnetic fields such as microwaves. It can weaken our immune system and ultimately lead to illness. 

 http://www.caribarena.com/antigua/mobile/emf-exposure/97301-emf-effects-on-your-body-cells.html#ixzz2TZVmvQJh" ~JUUVA fact sheet

In this electrical age we are surrounded by electrical currents that our bodies are absorbing.

Think about it, our bodies are made up mostly of water, we are a perfect conductor for electricity.  If you want to go further, to the molecular level, we are made up of atoms, so not only do we conduct electricity, we are basically an electrically charged being!  

We want to keep our body in balance.  The electrical appliances we surround ourselves with put out positive ions.  Positive ions are BAD, they're free radicals and they harm our bodies.  

Here's a list of the harm they can cause:

• constrict blood vessels
• increase blood pressure
• increase blood acidity
• weaken bones
• suppress urination
• decrease nitrogen in urine
• make breathing more difficult
• increase pulse rate
• impair heart function
• prolong physical recovery
• tense and strain the nervous system
• suppress and delay growth

Are you ready to go live in the middle of the woods yet?  It might be a good idea, the woods will have an abundance of negative ions.  Negative ions are GOOD for you!  You can find them in nature, at the ocean, after a thunderstorm, next to a waterfall......in your home you can find negative ions in your hot shower! Negative ions help neutralize positive ions. 

Negative ions:

• Dilate blood vessels
• stabilize blood pressure
• increase blood alkalinity
• strengthen bones
• promote urination
• increase nitrogen in urine
• stabilize respiration
• decrease pulse rate
• enhance heart function
• speed physical recovery
• calm and relax nerves
• promote healthy growth

 Don't worry, you don't have to move to the wilderness.  I have found a way to protect myself and my family.  

All of our dangerous devices have a cation shield.  So when I stand in front of my blender, making a super healthy smoothie, I'm not worried about the EMF's being produced.   My father-in-law put one on his cell phone, which he carries in his pants pocket, and discovered relief from leg pain that he had been suffering from.  I no longer get headaches when I'm using my laptop.  

I also wear an anion emitter.  The one I use is from a company called JUUVA.  JUUVA's emitter is the strongest on the market, putting out 2,000 negative ions per linear inch, a total of 10,000 negative ions.  Juuva's emitter is also the best priced on the market.  Now, you can get emitters cheap on amazon, I tried one, they don't work nearly as well.  My symptoms are severe, in fact on a bad day I use two or three emitters.  I no longer take pain meds, and only take a muscle relaxer occasionally.  Not only does this dramatically decrease my headaches, and my muscle pain, but it provides me energy and an over all sense of well being.  Don't get me wrong, I still have bad days where I literally feel like I'm dying, but I don't think my bad days are as bad as some of the days I see others in the lyme community talking about.  Honestly, most days I feel relatively good, my complaint is that my body doesn't work.  Nothing is more frustrating then feeling like doing things, but not being able to stand on my two feet long enough to accomplish anything.  Negative Ions aren't a cure for lyme, but they sure do help!

Yes, I do distribute JUUVA products.  So, don't take my word for it, listen to Myrtle. Myrtle is a sweet lady who is 104 years old and feels she has been left on this earth to help people. Take a minute to listen to this sweet lady from New Hampshire.  

a friends perspective

      My friend Amanda sent me something she wrote.  She said it was on her mind and she felt she needed to write it down.  She sent it to me to use however I saw fit.  I thought it would be a nice guest blog.  I don't think about how others are viewing me and this situation.  My family and I consider this our new normal.

            I have known Holly Lounder for 12 years.  Our families both started going to Family Bible Church around the same time, and we both had little girls in the nursery.  Our girls became fast friends, and since they spent a lot of time together when they were little, so did we parents.  Over the years of church functions, birthday parties, and general get-togethers, we all became friends.

            We really got to know both Scott and Holly much better after they opened their karate school and we signed our daughter up for classes.  Sure, around that same time, we worked together as Sunday School teachers for the middle schoolers, but Holly’s migraines kept her out of commission most weeks.  As Sherri got more involved in tae kwon do, she got her dad to start as well.  During this time, I would help out by taking the three Lounder children out of the studio a few hours every week, since they were all “stuck” there 4-5 hours a day, 4-5 days a week.  As the kids grew, and I started training as well, both my husband and I started helping out more with the TKD school stuff.  There were times when Holly couldn’t teach because her headaches were too bad, or she was too tired.  Then there was always the illness or injury that happened when she was about ready to do her next test.  Something always seemed to slow down her achievements more than she liked.

            Even still, the one thing that stands out to me is how much on the go Holly always was.  Besides running the school, very often she was holding down a job of her own or homeschooling her children.  There were tournaments every other month, or so it seemed.  She would travel for training with her instructor.  She was always trying to make it to the after school activities that her kids participated in.  There were the extra events for the TKD school, such as parties, sleepovers, or Kidz’n’Power training at least once a month.  And even when she was sitting, she was doing paperwork for the TKD school.  Sometimes, she had so much stuff to do, she’d task some of it to me - the joke being that I was her brain.

            The Lounders have reached out to the community through their TKD school.  Most years they can be seen demonstrating their skills in the Ellsworth Christmas parade.  Some years, they “show off” at Relay for Life or Autumn Gold Days.  They have started a yearly recital that supports a different local cause each year.  They teach kids not to be victims.  They have focused on bully prevention.  Each demonstration shows several different scenarios where the small person has to get away from a bigger “bad guy.”  They have helped improve the confidence, self-esteem, and self-control in many kids (and adults) in the area.

            I stopped training in TKD about 2 years ago now.  And because of how busy life gets, I lost touch with Holly.  Sure, I’d scroll through Facebook and see her posts, comment on them sometimes.  We’d chat occasionally, always planning on getting together sometime soon.  But, again, life gets busy.  Then I find out she’s been sick - sick enough that she’s spent a few days in the hospital.  No one knows what’s wrong with her, and they send her home, unable to work because of how sick she is. 

            That’s when I decide that I’m going to help out whenever and however I can.  It turns out that one visit a week is what is working right now.  In the beginning, we were doing paperwork, testing invitations, searching for papers....  I could tell that Holly wasn’t up to par, her usual self.  And what really was frustrating for me those first few weeks was that I knew how upsetting it was for her not to be able to do anything.  In the beginning, she did make it downstairs; but I could tell, coming back up after the little work we did down there wore her out.  Sometimes we just sit and visit together.  A few visits, talking would trigger “tyrannosaurus arms.”  Some visits, she tells me she has slept all day, only waking up because I was coming over and she had something to look forward to.  She recently started her new treatment, and that has taken an obvious toll on her.  Working on paperwork is taxing enough that it almost starts seizures.  Watching tv, it’s sometimes hard for her to follow what is going on.  By the end of my visits I can tell she’s ready to go back to sleep again.

            I don’t really know the purpose of writing this all down.  Holly’s been keeping her own blog of what’s going on, and that’s from her point of view.  I’m an outsider who has a different point of view, and really hasn’t been around all that much.  But I can see there’s something wrong with what’s going on with her.  She finally got a diagnosis of Lyme about a month ago.  With treatment, things seem to be going downhill right now.  It is so frustrating to see someone so sick, with the doctors in the area not able to help, and insurance not recognizing she really has a problem.  No treatment is covered, everything is out of pocket.  

Brain Dead

Don't think my lack a posts is a sign I'm not feeling well.  I know, I know, in a prior post I said just the opposite, but the unfortunate thing about lyme is there is a complete lack of consistency when it comes to presenting symptoms.

I actually have had only two bad days since Thursday.  A bad day is a day where I am so lethargic I can't barely motivate myself to meet my own basic needs.  Even if I tried to get up my body wouldn't work and allow me to cook or do a chore.  These are days where I sit in the recliner and am only able to think about how helpless I am.  If I were to lose my home or my husband I wouldn't even be able to motivate myself to get to the homeless shelter let alone figure out how to get myself help.

A good day is a day in which my body isn't aching, I'm awake and alert, my mood is positive and I have the desire to be productive.  I am able to move around the house almost normally.  I can cook my own lunch and get my own meds.  I can do a load of laundry and pick the dog toys up off the rug.  I think I am beginning to have more good days then bad thanks to the antibiotics.  Unfortunately, having a good day and being able to do some general activities that take little thought doesn't mean I'm better.

I'm finding that I'm now more aware of the neurological symptoms.  These are the symptoms that antibiotics in pill form won't touch.  It will take shots, or IV antibiotics to break the blood brain barrier and start eradicating the lyme bacteria from my central nervous system.

This morning is an excellent example of the struggle I have with these symptoms.  I woke up feeling relatively normal.  I didn't feel the need to have a morning nap like I usually do after my second dose of meds.  Instead I got up and headed toward the bathroom to shower with hopes of accomplishing a long to do list of tasks I had been saving for a good day.  While in the shower I started to go over the to do list in my head.  Very quickly I felt a mild seizure coming on.  I then had to stop thinking and start emptying my mind, breathing slowly, so that I could relax and not have a seizure in the bathroom.  Once I regained control of my body I finished my morning routine and returned to the couch physically and mentally exhausted.  Unfortunately, the mere use of my brain to organize tasks by priority was to overstimulating.  So here I sit, attempting to write this blog instead.

Writing this blog is extremely difficult.  I have to stop and stare at the wall every couple of sentences to regain focus.  Usually ideas flow from my brain to my fingers with ease but instead I am finding it difficult to retrieve the word I want to use from my brain and put it into the sentence.  Actually, that's when I try to figure out what I want to say in each sentence.  I've spent more time staring at the wall then I have typing.

So, my initial motivation to get things done today has been beat out my the lyme bacteria hanging out in my head.  Not only does organized thought trigger seizures, but something as simple as writing a blog has worn me out.

Watching TV is difficult as well.  I hear the people talking, but struggle to process what they said. Reading is a slow and laborious process for me too.   I am finding that the only activity I can consistently do is play Candy Crush....that should tell you how little brain effort that game takes.

The good news is I am FEELING better.  I am just not functional yet.  The side affects of antibiotics aren't fun but I am so ready to get better I don't mind.

Vet's are in the Know...growing epidemic as observed by an increase in canine lyme

Cato the Ninja Dog has been sick.  Well, maybe a little out of sorts would be a better description.  Sunday his face swelled up significantly, the swelling went down but the little guy was shivering often, lethargic, was losing some hair and had a slight rash on his belly.

The swelling in his face went down but his continuing shivering concerned Scott and I.  We discussed whether or not he should go to the vet.  We would feel pretty silly spending money on a vet visit to be told that Cato was shivering because he was cold.  We love this dog to pieces, but we are on a very tight budget with my medical expenses.  In the end, Scott took him to the vet.

No worries!  Cato was just having an allergic reaction to a possible bug bite.  To be on the safe side Scott had him tested for Lyme.  Our previous dog, Brownie, had lyme back in 2010 so we knew that Cato could be just as likely to catch it. (test came back negative)

What was maddening for Scott and I was how knowledgeable the Veterinarian was on the prevalence of lyme disease and the unreliable testing available for people.  The vet shared that lyme testing in dog's is over 95% accurate but in humans the testing is lucky to have a 50% accuracy rate.  Scott shared with the vet my story in how hard getting diagnosed was.  The vet was shocked that I had been sick for 20 years but no one ever figured out what was wrong with me.  What none of us get is why the medical community doesn't recognize that testing negative for lyme doesn't mean you don't have lyme.  What I don't get is why vet's seem very educated on this fact.  The vet told Scott that there has been a dramatic increase in dogs testing positive for lyme over the past few years.  They are taking this epidemic very seriously.

Maybe I should have gone to the vet for treatment.   Geesh.

So, how am I doing?  Well, I stopped taking the medicine that was triggering so many seizures.  I only had two seizures today.  WooHoo!  I went in to the hospital this morning and had my blood drawn.  Scott packed it up and fedex came to the house and picked it up.  Right now it's on it's way to IgenX lab in California.  IgenX is a lab that specializes in testing for Lyme and it's co-infections.

Will anything show up in this testing?  I have no idea.  I am praying something does.  I don't need a positive test result to start treatment.  Lyme is a clinical diagnosis.  I've already started treatment.  I would like to have something come back positive to have on record for future battles with insurance companies and social security.  (Yes, reluctantly I have started that process.  I am determined to go back to work as soon as possible, but I have to be prepared just in case.)

So, $1000 out of pocket, it's like gambling.  Unfortunately, it is necessary, and would help direct treatment easier if co-infections showed up.

I started my small dose of amoxicillin today. I was optimistic this morning that I wouldn't notice the small dose and would have more energy like I did before our trip.  NOPE.  I feel run down and unmotivated.  I'm also getting the nasty side affects that come with antibiotics.  Despite this, where I'm having fewer seizures now I have been able to do some paper work for our ATA School.  It was nice to take a small burden of my overwhelmed husband.  It is also nice to be able to watch tv and read again.  (these activities were triggering seizures).

It's testing week in taekwondo!  I am wishing I could be in the studio to see our students perform.  I am enjoying listening to their yells downstairs while I chill up statirs on the couch.

I am thankful for all the kind messages and assistance in various forms I have received.  Overall, if I'm writing a blog then I'm having an ok evening.  Let's see what tomorrow brings.

Lyme focal seizure

I don't know if the term "Lyme Seizure" is even an official term.  My brief research on Dr. Google tells me that the type of seizure's Lyme patients have are actually Focal Seizures.  These seizures can take many forms, but the one common denominator is that the patient is conscious during the episode.

I'm talking about seizures because that has been my life for the past few days.  As annoying as they are getting to be, it's a very distinct sign that neurological lyme is what I'm suffering from.  Don't worry, I emailed my doc and she confirmed this is a normal response to the medicine I'm currently on.  The antibiotic "metro", is likely to intensify neurological symptoms in lyme patients.

The question I've been pondering this week is WHEN the lyme bacteria began affecting my neurological system.  I guess it doesn't matter.  I am still processing the past twenty years of my life.  My entire adult life.

Today both girls were home all day.  I would have loved to have done something with them.  The fall weather makes me want to decorate my house, cook goodies, do a project, play a game.  Instead, I have been sitting on the couch all day barely able to speak let alone hold a conversation.

I'm feeling a bit better at the moment.  My eyes are open, I'm on the computer, I will be thankful for this moment right now.

Lyme seizure's are interesting.  I feel them coming on, I can even hold them off for a bit.  It's like being nauseous.  You feel like you have to puke, but you don't want to puke.  After a while of feeling this way you realize puking would give you relief from the nausea.  So then you WANT to throw up and you sit and wait for your body to do what it's trying to do.  My seizure's don't make me exactly nauseous, maybe dizzy is a better description. But the experience is the same. I want to try and not have one, but after a while of feeling funky, I relax and wait for what is going to come tot come.  I have found that when I let them come they aren't as bad.  When I hold them off, trying to prevent them from happening I end up being over come by a huge seizure.  Wednesday I only had one.  Thursday I had a couple.  Here I sit today and I have been having small ones all day, thus the reason I haven't left the couch.

I am attaching a video of the seizure because I think it's important to educate our community.  If this video catches someones attention enough so that they want to learn more then having the seizure is worth it.  We are in the middle of an epidemic so large I consider it a national crisis.  Our government is ignoring the sickest of the sick in our country.  My initial lyme test came back negative, that doesn't mean I don't have lyme.  Our state just passed a law mandating that patients are informed of this when receiving a negative result on a lyme test. Despite this law, which was passed in June, I have had a doctor look me in the eye and say, "You DON'T have lyme".  If I don't have lyme then why am I having seizure's due to the antibiotics?

I will keep talking until you not only listen to me but you HEAR me

I have so many causes that are dear to my heart, but as of now, Chronic Lyme disease is the one topic I will talk about the most.  I had NO IDEA the controversy around it.  I had NO IDEA that it's a topic doctor's aren't educated on.  I had NO IDEA a negative lyme test doesn't mean you don't have lyme.

I asked my PCP today if she had heard about the legislation passed in June concerning informing patients who are tested for lyme that a negative test result doesn't mean you don't have lyme.  She had just heard about this in passing conversation over the past month or two.

Did you know that if you don't pass the initial lyme screening doctor's wont' test you for the more accurate Western Blot?  That is CDC guideline.  How does that make sense?  You don't pass the more inaccurate test you don't get to have the test that is more detailed?  What?!  Seems pretty backwards to me.

I have spent 20 years ignoring lyme because that initial test came up negative.  That test that only tests for one of the over one hundred strains of lyme.  Even better, that one strain is a strain from Europe.  (Plant fist to head)

I'm trying not to be angry.  I'm trying to reprogram my brain.  I have spent twenty years telling myself that symptoms I experienced weren't' as bad as I thought, or that they were in my head.  Even now, when I'm having a focal seizure, my body is convulsing and my brain is saying "cut this out, you can control this, you're letting this happen"  This is what twenty years of misdiagnosis has done to me.

So, I feel it's important to share this journey.  I feel it's important that you know things, such as finding a doctor who treats chronic lyme means joining an underground network of private messages and quiet connections.  Doctor's run a great risk when they treat chonic lyme.

I'm not a doctor, so I run no risk.

I will share this journey and hope that by doing so I am raising a level of awareness.

Light needs to be shed on the suffering of hundreds of thousands of citizens.
Light needs to be shed on our insurance companies refusal to pay for treatment.

My Lyme is neurological.  I also most likely have co-infections making my treatment even more complicated.  I need IV antibiotics because those nasty bugs are in my brain and the pills can't adequately cross the blood brain barrier.  Insurance will only pay for one month of IV antibiotics and one month of in-home care.

My casual estimate is that we will be paying $1000 a month for medicine, supplements, appointments and blood work.  I have no idea how we are going to do it, but we have to do it.  My life literally depends on it.  The CDC and our insurance companies don't want to acknowledge patients like me.

I want to live this disease out loud.  I will be talking about it on facebook, please don't think it's attention seeking or complaining.  I am trying to start dialogue that will not only educate, but also help others who are sick and don't know why.  I don't want others to wait twenty years to figure it out.

I will be posting pictures and videos.  I am doing this because I know what would have captured my attention before this.  I saw things about LYME but I didn't think it was any different then any other disease people suffered from.  The difference is the medical community not seeing, not understanding the suffering of the patients they see.  The difference is that patients are forced to pay out of pocket for their treatment.

My diagnosis is a clinical diagnosis based on symptoms and the ruling out of all other possibilities.  My diagnosis is confirmed by my reaction to the start of treatment.  I am currently taking an antibiotic to stir the little bugs up.  I will then have blood drawn Monday.  The blood will be sent to a lab in California that specializes in Lyme testing.  I will also be tested for co-infections.  It is uncertain if anything will show up because I have been sick for so long and my immune system isn't responding to the disease.  They test looking for an immune system response.

The first day on this antibiotic I felt like I had the flu and had a seizure.  I am so thankful for that!  It is a clear sign lyme is being killed.  The die off of the bacteria cause what is called a HERX reaction which is basically an increase and intensifying of symptoms.  So when things like tinnitus set in (a new symptom) I rejoice because I know there is a war going on and my body is doing it's job.

I say bring it on.  I don't mind being sicker because I'm ready to get better!

Home with a plan

I'm using this blog as a way to update all of my friends and family as to what is going on with me and my health.

I'm home from a very long and tiring trip to DC.  I'm slowly recovering some energy and processing all of the information I received at the doctor's appointment and all of the information concerning my treatment.  I'm feeling very overwhelmed right now and am trying to slowly educate myself and prepare for the journey I am finding myself on.

I'm processing anger over years of illness. I had stopped going to the doctor's about my symptoms because there were no answers.

  I was reminded how difficult it was to raise toddlers.  I felt like a failure because I didn't have the energy to have a job during that time.  When I tried to work I was so sick and tired that I would have to leave my job The best years were when I was homeschooling.  I was able to set a schedule around my own health needs. That is how I was able to train in the martial arts and start the ATA school.  I don't know if any of you have noticed, but in 2009, when I returned to work, I stopped being as involved in the daily running of the school. Scott and I knew this would happen when I decided to go to work.  My history of headaches, needing a lot of sleep, and getting sick often would prevent me from "doing it all".  I have found things like going gluten free, and using health products from Juuva have helped me have more energy and better health. Unfortunately, my brief times of finding energy and a better since of well being were always followed by a return of symptoms, or a change of symptoms.

I feel a sense of validation.  I remember the summer of 1994, a year after my onset of symptoms.  I was working at Living Waters.  I would do my morning job and then sneak a nap in before morning chapel.  I would do my lunch time chores and then take another nap in the afternoon.  I remember being so exhausted I could barely stand it.  I saw the nurse, spent some time in bed, didn't get better, went home to see my doctor, got tested for every disease and condition you could think off, still couldn't find anything wrong.  I ended up leaving camp early that summer feeling like a complete failure.  I was worried about people thinking badly of me.  I just couldn't do it.  I spent the next ten years going to the doctor about these symptoms until I finally gave up and figured that like Paul, this was my thorn in the side that I had to live with. I prayed that if it was God's will He would relieve me of my suffering.

I am grieving the lost years with my children.  All the activities they wanted to do when all I could do is sleep, or hide in my room from a headache.  Playing games, doing crafts, cooking....all the things I wanted to do with them, I often didn't because it was just to overwhelming and I was to tired.  The taekwondo trips I spent with a blinding headache.  The family outings I spent with a blinding headache.

 20 years.

I have a new awareness of my own strength.  I have pushed and functioned to the best of my ability until my body literally stopped working.  I am now struggling to accept that I have NO ability to take care of myself.  If it weren't for my wonderful husband I would be in tough shape.  I hate, hate, hate that I can't take care of myself right now.  I hate that I am unable to work, to be productive, instead I feel like a burden.

I am scared.  I am sicker then I realized.  The Lyme isn't only neurological, but it is beginning to affect my cardiovascular system. I have no choice but to begin treatment.   Treatment that isn't recognized by the CDC.  I have joined a club of people who are the sickest on the planet and also the most ignored by our government.  Treatment will make me sicker for awhile, will cost money that only God can provide, but I don't know much longer I can survive without treatment.  It isn't a choice.

So I sit here.  I have said it before, but I will say it again.  God is teaching me to depend on Him and not myself.  So far He has provided, so I ask your prayers that I will stop worrying.

So, now my venting is done I will share the plan.

I will start a heavy load of antibiotics on Wednesday.  They will hopefully stir up the stinking bugs in my body so they will show up in testing.  On Monday I am having specific blood testing drawn to test for not only Lyme, but for co-infections.  My diagnosis is a clinical diagnosis based on history, and doctor's office exam.  The tests for Lyme are unreliable and best.  The longer you have been sick the more difficult it is to get positive test results.  On Tuesday I will start amoxicilian and remain on that until my next appointment (which will be over the phone) to go over my test results.  Once the results are back, Ginger will decide on the best course of treatment.  Most likely shots, and maybe IV treatment.  I am also on a detox diet.  I am trying to prepare my liver and gut for the antibiotics.  I will also be purchasing therapeutic levels of probiotics , along with some supplements for my liver to ensure I protect my internal organs during treatment.  I am on an elimination diet to check for food allergies.  I am also calcium and zinc deficient so I will need to take care of those issues.

Lastly, I appreciate all opinions and advice.  At this point I will be strictly following the treatment given by my practitioner.  I have spent a lot of time researching and I have asked lots of questions.  Now that I have decided on a course of treatment I need to trust and follow the instructions of the practitioner I have chosen.  I am blessed that I got into her just in time.  Her practice is now full and she isn't accepting new patients.  Lyme is her specialty and she has extensive training.  Not only that, but she, herself, has recovered from Lyme.  My story is HER story.

If you have read this entire blog then I assume you are someone who cares about me and my family.  Thank you!  I beg for your prayers that we can get through this very difficult winter.  I will be laying low from this point out.  Cato and Netflix are my new best friends :)

diet is curing me

I am so excited to get to DC and my appointment with Ginger Savely.  Not only am I excited to finally work on a comprehensive diagnosis but I'm excited to discuss a plan for treatment.

What I am really interested in talking to Ginger about is my theory that I am improving due to the Galaxy Blend I have been taking.  I really believe I have been going through a version of the Herx reaction.  I am going through cycles of getting sick, but then after being sick feeling even more recovered.  I truly can feel the war going on in my body and it makes me realize that this high blast of nutrition is helping, but I have to do even more to win this battle going on inside of me.

I stopped eating gluten last year and did feel better for awhile before I started getting sick again.  I guess it's time to start paying even more attention to my diet.  I know it's time to cut out sugar and probably dairy..sigh, I love my sugar and dairy, but I love being healthy even more.

I think cutting out sugar will be my next step, while I slowly wean myself off the dairy.  I like almond milk so that will be an easy switch, cheese on the other hand....well, one thing at a time.

I remember a few years ago I did a presentation for school on the obesity epidemic in our country.  My main point of discussion is that it was to expensive to eat a healthy, nutritious diet.  Not only that, but eating healthy was also time consuming and we, as a nation, were to busy to eat healthy.

Instead of obesity, if I were to do a similar project today, I would discuss the crisis our country faces due to a population of individuals who are malnourished.  We eat a lot, but our bodies keep craving more because we are depriving ourselves of the essential nutrients we need to maintain optimum health.  Even when we try to eat healthy by buying more fresh fruits and vegetables, we don't realize that we are being deceived.  The fruits and vegetables in our produce section lack the nutrients we think we are paying for.  Spend more and buy organic?  Make sure you are paying attention to where the organic food is coming from.  How far has it traveled to get to your local store?  Was it actually ripe when it was harvested?  Or if it is frozen, dried or modified in some way, what temperature was it modified at?  It all makes a difference.

To difficult? To expensive?  To time consuming?  I use to think so.  I would see other people put effort into their diet but saw it all as to overwhelming to do myself.

Do you feel that way?

Let me tell you what I have learned.  It takes baby steps to change your perspective.

I started with going gluten free.  I did it to prove a point, but discovered I felt so much better.  I committed to three weeks, but after the three weeks were up I felt so good that I had the motivation to keep at it.  Now that I was eliminating something my body didn't need and replacing it with foods that better met my nutritional needs I found I was actually eating less.  In turn my grocery list was shorter evening out the costs of buying some food that was more expensive.

The next step was being introduced to products from JUUVA.  I was first impressed with the benefits of negative ions and the relief I was given from discomfort.  I had been headache free for months after cutting out gluten, but the pain was slowly returning.  When we decided to become distributors for JUUVA we decided to try all the products out one at a time.

It soon became time to try the Galaxy supplement.

WOW

Once we started taking it, stopping it was not an option for us.  We budgeted it in to our monthly grocery budget.

Funny thing, it seemed expensive at first, but in reality I believe we are saving money.

We are meeting nutritional needs our bodies were lacking.  In turn, we are finding we are craving food less, and not buying as much food as we use to.  Along with this, we are feeling so good our precious time is being used more productively allowing us to not only work more, making more money, but also we have the time to budget better.  I have become better able to organize, plan, prepare..little things, such as having the time to budget our monthly needs ahead of time, shop for the month, find the best deals, all of these things our saving us A LOT of money.  The cost of the Galaxy was easy to budget in simply because we are now feeling so good we can easily figure it out!  Feeling healthy is encouraging us to make healthier decisions.

As far as the Galaxy and Lyme Disease, Dr. Booth thinks it can help my body detox the lyme just like Galaxy helps fight cancer.  My brief research on line shows me that recommended lyme diets are similar to recommended cancer diets.  With this thought, if we have scientific proof of the effects of Galaxy on cancer then couldn't Galaxy work on lyme the same way?  (google "galaxy effects Dr. Gary Booth)  All I know is my body has been responding similarly to videos and testimonials I am watching and reading about the HERX reaction when starting antibiotics.

Yes, every time I blog here I talk about JUUVA.  This blog was originally started to discuss Juuva, Nutrition, Environment, and working from home.  As I am feeling better I will be returning to these topics.  I also have been neglecting my ELLSWORTHATA blog.  ( I have one drafted..stay tuned)

My heart has been in taekwondo, it is a perfect union to join that passion with my slowly growing passion for nutrition.  My Grammie Maddocks instilled the importance of nutrition and environment in me when I was a child.  I didn't fully understand it back then, but now it is all I think about!  God has given us everything we need to be healthy.  He created a perfect earth that we have slowly been destroying.  We are unable to fulfill our purpose in life if we are unhealthy, hurting, sick, and tired.   I do believe the healthcare system is important and has it's place.  I think we are missing the boat if we place medicine over nutrition.  The more we show these products to people, the more my heart is heavy for all of you who are suffering physically.

Laughing so hard I pulled a muscle in my gut!

I had a GREAT weekend!  So great that I wanted to blog about it yesterday, but I was to tired!

First, I had to share that with the generosity of others I have my first doctor's appointment completely paid for!  Praise God!  Please pray that either through our own income, or through donations, we can pay for the blood work I want to have done that isn't covered by insurance.  Or, pray that blood work covered through insurance will provide enough evidence for a diagnosis.  Either way, I am always on pins and needles about being covered by my disability insurance. I have about five months left that is available to me and I am approved through November 15th.  They will reevaluate on the 15th to decide if they will extend it further.

Now I can talk about my weekend!  Scott and I decided we could see us in the future, traveling around the country talking about JUUVA.  We enjoyed the time we spent with each other in the vehicle as we traveled to Massachusetts.   We both love to travel.  We also love sharing with others what we are passionate about. For us it is martial arts AND Juuva.  This weekend we got to share both!  We visited a former student and old friend whom we have missed having in the area.  We were sad when the family left, but have been proud to watch them continue their martial arts training.  Needless to say, both she and her son have proven to be as talented and dedicated as I knew they were!  I can't wait to work together with them in the future, when I'm training again, on XMA and demo team!  Until then I am happy to share the advantage having our products gives the martial artist when it comes to strength, balance and flexibility!  It is so fun to share this advantage with others who understand it and get as excited about it as we are!  Can't wait to go back!  Oh, and having some gluten free, home made thai food waiting for us after the long ride was pretty great as well!  YUM!

After a great afternoon, Scott and I returned to Portland in time to catch the end of our monthly Juuva Seminar.  I haven't been able to socialize with our Juuva Team Extreme friends for a long time.  They were all just as on fire after the seminar in Utah as my husband was.  By now my body was "all done" and I was confined to my wheel chair.  That was ok with me.  I had managed to walk and get around rather normally all day.  I wasn't surprised to have my arms and legs decide to become uncooperative.  A month ago all it took was an outing to town to become this symptomatic.

I love it when you learn something new.  Saturday night I learned that I was becoming sicker then I realized last spring.  The Juuva products were helping me to function normally.  I truly believe, with my whole heart, that God introduced me to these products at the right time.  Last winter I was starting to really struggle.  If I hadn't started using these products I would have been home on disability before summer started.  If this had happened, I never would have crossed paths with a new coworker who saw my symptoms and had enough knowledge about lyme to point me in the right direction.  Actually, she didn't point, she pushed, pulled and drug me in the direction of lyme.  If it wasn't for her I would be home right now thinking I was insane.  I would have been scared and feeling hopeless.  I also would have been to sick to get online to do my own research.  My stint off the galaxy showed me how sick I could be.

I already knew this, but I was reminded of it when I told my friends how much of the Revive and Zing I was using a day.  Apparently, most normal human beings would have been awake for a week taking that much of the energy products we sell.  Don't worry, the products are all natural and good for you.  I never took more then the maximum recommended dose.   I was shocked at the surprise on everyone's face when I mentioned how much I use to use and they were shocked that I was serious!  I laughed so hard as the story spread from table to table and people continued to respond with shock.  I laughed so hard I pulled a muscle in my stomach!  It felt so good to laugh like that!

So, I am still taking two doses of the galaxy.  I still need only one nap during the day most days.  I have more endurance when I'm up and around before my body gives out.  Unfortunately, I still can over do it and pay the consequences for a few days afterwards.  I haven't taken the Revive since I stopped working.  I can't wait to see how I feel when I'm better!  One thing's for sure, the Revive will last a lot longer!

Wheelchairs, endurance, learning restraint

Yes, you probably will be seeing me in a wheelchair.
No, that doesn't mean I'm worse, or can't walk.

Actually, I'm continuing to slowly feel better!  My bad days aren't so bad, and my good days are becoming GREAT days!  Feeling better, though, doesn't mean I'm back to normal.

Now that I'm feeling better I tend to want to do more. Unfortunately, my endurance doesn't match my sense of well being. It is really easy to over do it.  For instance, I can feel good enough to walk in a store, but then once I'm in there for a bit I realize I can't walk out.

The wheelchair is a necessity to conserve my energy.  It is going to allow me the freedom to do more outside the house.  I don't have to limit myself to stores that have wheelchairs and I am able to go on family outings that involve walking.  If my legs aren't tired I find I can engage in conversation for longer periods of time without my arms going all crazy.

What's really cool is that I'm now doing forms as part of my physical therapy.  I haven't attempted any moves in my 3rd degree form yet, but I can slowly work my way through Songahm 1 and Songahm 2.  The human body amazes me!  I can limp down the stairs to the studio, and then preform two forms with decent balance and body control.

I completely attribute my improvement to what I'm putting into my body nutritionally.  I just started the alkaline, ionized water and I think that is contributing to my improvement.  Wouldn't it be cool to go to my appointment in November with the Lyme Literate Practitioner and have minimal symptoms?!  I am really praying for a quick recovery!  I hope that I have jump started myself on the path back to wellness.

I am continually grateful for all the forms of support my friends, family and community have shown.   As hard as this has been on me, it has been equally hard on my husband and kids.  They have been troopers through this.  I'm so blessed.

Nutrition has been the biggest help so far

One of the first things I learned on my journey down the road away from traditional health care is the concept of detoxification.  What I mean is that often when you begin a regimen of something good for you your body feels worse before it feels better. Now I am going to give you my perceptions of this, please note that I don't pretend to be an expert in this area, but I can give you my simplistic comparisons.   It's like our bodies can only hold a finite amount of "stuff" and we are constantly balancing the "good stuff" and the "bad stuff".  So, if we change the ratios of what we are putting in then there needs to be a change in the ratio our body is holding.  If we start putting more of something good in our body, our bodies natural response is to push out some of the bad it's holding.

An example of this is when I started drinking naturally ionized, alkaline water.  I was warned to start out slow to allow my body to get use to it.  Being an all or nothing kinda person I didn't follow this advice and started drinking nothing but water run through my Energy Cup.  The result was feeling dizzy and spending a large amount of time in the bathroom.  This was due to my body detoxing.  

Where am I going with this?  I'm not sure!  I have two or three ideas in my head I want to communicate!  Let me focus on nutrition and a thought I'm pondering  in regards to WHY  this is all happening to me this summer.  I ran this idea past my doctor yesterday and she agreed my idea did make sense.

It is like there is a war going on in my body.  If I have lyme then that, of course, is obvious.  Where I don't have that diagnosis yet, I won't write as if I do.  I will just call it a war with an unknown enemy.  When I started taking the Galaxy Blend I experienced a dramatic relief from arthritis symptoms in my knees, wrists and fingers.  The funny thing is that soon after that I also began to experience the neurological symptoms increasing.  I AM NOT saying I think the Galaxy is causing this, but I am wondering if the Galaxy triggered something in my body, that was laying dormant, into fight mode.  The "enemy" relocated to another system in my body.  So, with this idea in my head I chose to start taking a second dose of Galaxy every day.  I am not only feeling better with my energy levels, endurance, and over all sense of well being, but I am seeing a REDUCTION in neurological symptoms!  It seems slow, but steadily, I'm improving!!!!!  

I ran this by my primary care physician and once I showed her the ingredients to the Galaxy she quickly agreed that my "theory" was very plausible. My doctor has an interest in nutrition and homeopathic medicine.  She was very opinionated that my course of action in regards to how I am dealing with this illness is the correct one. Don't worry, I still plan on visiting a lyme literate doctor for diagnosis and treatment.  My hope is that with what I'm doing already, my antibiotic treatment will be more successful.  

My husband talked to Dr. Gary Booth from BYU a few weeks ago.  Dr. Booth is studying the Galaxy in regards to cancer.  Dr. Booth confirmed our opinion that the Galaxy is one of the best weapons we have in our arsenal no matter what we are waging war on.  Our body is able to wage war if we give it the strength to do so.

one step forward two steps back

Good days are often hard for me.  I know that sounds like a contradiction, but on good days I'm feeling well enough to not only want to do things, but actually be able to do some things.  The part that is hard is my motivation is limited by my disabilities.

Saturday I had a great day!  I went with Jenna to get her senior pictures done.  I went apple picking with family and friends.  My husband got a workout pushing me around in a wheel chair through the rough terrain of the orchard.  He was a champ!  I really wanted to do the corn maze but by the time we were done with apple picking I could feel that twinge in my stomach that told me the extreme fatigue was setting in.  Not only that, but there was no way the borrowed wheel chair would be able to make it through the corn maze anyway.  Don't worry, I was super happy with what I was able to do!  It was a lot!

Sunday was a tired day for me.  I spent it resting.  My usual consequence for a busy day.  I knew I had to plan on resting all day and accepted that.

Monday was another good day!  I got some things done around the house, did some bookkeeping and other business tasks, and even went shopping at goodwill!  (I love bargain hunting.  I got a bunch of clothes with the price tags still on!).  I was a little disappointed I didn't have any energy left to get to a second store but I guess fatigue helped me not spend to much money.  I had such a great day Monday, and I felt I hadn't over done it.  I took a nap and paced myself.   I was looking forward to today and getting more done.

And here it is Tuesday and I am exhausted.  I don't know why.  I don't feel like I did to much yesterday.  It is just a reminder to me that I am sick.  I guess that when I'm feeling good I am still pushing to hard.  Maybe I shouldn't have cleaned out a closet yesterday.

The good news is the numbness in my foot seems to be improving and I am finding my arms don't spasm as often.  Those improvements are consistent and I attribute to the Galaxy I always plug.  I plug the Galaxy Blend because I truly believe it is the best on the market and I attribute that along with my emitter and energy cup as the reason I don't need pain medicine anymore.

As much as I wish I could completely cure myself on my JUUVA products alone, I know the reality is I need medical help.  I have gone the route of traditional doctors who follow strict CDC guidelines, out of ignorance, or out of fear.  I have accepted the fact that a Lyme Literate Doctor is my best answer.  Most Lyme Literate Doctor's don't accept insurance.  I am going to be paying out of pocket for a lot.

I am going to be very blunt and honest now.

I am on temporary disability for six months.  My pay has been cut by $800 a month.

I am traveling to one of the best Lyme Literate Practitioners on the east coast.  I believe I have had Lyme for 20 years.  I remember when I first got sick at the age of 17.  I believe I now have neurological lyme.  I am taking this very seriously and I want the most knowledgeable practitioners treating me.  I have a martial arts school to run, students to mentor, a community to serve.  I need to get back to martial arts and will accept no less.

My first appointment is $750.  My second appointment is $500.  I will then have monthly appointments for $250. Thankfully I will be able to do these monthly appointments as a phone call.  The blood tests I will be seeking will cost out of pocket $1000.  Some of this I will be able to get back through my insurance, but only some.  I am hoping I can get my insurance to cover long term treatment.  I'm hoping I can get back to work in six months so I don't LOSE my insurance!

I am so grateful for the meals, visits, and prayers.  Those gifts have been priceless.

I am going to ask for one more thing.  Some of you may want to help but don't have time.  If God lays it on your heart to contribute financially to my medical costs then click on the link.  My friends have set up an online fundraiser to donate safely.  I will be setting up a saving account that I am using ONLY for medical bills.  http://www.youcaring.com/medical-fundraiser/hope-for-holly/82482

I hate asking for things.  I have promised some friends that when it comes to my financial needs I will be open and honest. So, there it is.  Right now Scott is running the school on his own with the help of a couple of volunteers. We want to keep the school running without changing things any more then we already have.  I want to be able to do the Ninja Recital again this year.  I want to offer all the services we have always offered through the school.

Honestly, prayers are my biggest request.  Yesterday I swear I could feel moments in the day where I was being covered by the prayers of others.  Thank you.  God will supply our needs.  I also don't want anyone doing anything that isn't laid on their hearts to do.  God gives us all different blessings to share.  No blessing is more helpful then another.  I pray God enables me to return to others everything he is giving me right now.http://www.youcaring.com/medical-fundraiser/hope-for-holly/82482

I want to run

I use to be a runner.
A really good runner!

Every fall, I catch that smell and crispness in the air that signals a change of seasons and I want to put my sneakers on and start running.  I think fall signals for me a desire to run because I fell in love with the sport due to cross country in middle school.  Not only did I love running, but I was good at it!  It wasn't that I was the fastest runner in the bunch, but I was probably one of the most competitive.  I would push myself to the point of collapsing just to finish at the top of the pack.  I enjoyed the control I had over my body and the endurance I had giving me the ability to push through pain.  Talk about an adrenalin rush after a race!  It was my own personal high.

I miss running.

I stopped running in my late teens.  My knees really bothered me.  I went to the doctor and was told it was arthritis, or I had fluid under my knee cap, or I damaged them from running so much while I was still growing. Whatever the cause of the knee pain, it stopped me in my tracks putting an end to the sport I loved the most.

I think part of the reason I fell in love with taekwondo was because it replaced running.  I had a natural ability to control my body movements, and taekwondo allowed me the control in determining how well I did.  I also was able to push myself in sparring needing to tap into the endurance I had in order to do well.  My knees bothered me in some ways but this sport didn't have the high impact that running did.

I still missed running.

In my early thirties my joint pain located itself in my wrists and fingers.  Before I knew it I had joint pain in my elbows and neck as well.  I resigned myself to the pain figuring it was my lot in life.

I then was introduced to the JUUVA products.  I was told the Galaxy blend would help with joint pain.  I didn't try this blend right away as I was more interested in other products. My husband tried it first and began raving about how good felt.  I finally decided to give it a try, and at first I didn't think I noticed much of a difference.  A few weeks went by, and it suddenly hit me, I had no joint pain.  I was in the kitchen cooking and I remembered how earlier in the day I had been doing lunges with our taekwondo class.  It hit me, I had felt no pain while doing them.  I tested my knees out by doing squats at the stove, I then did squat jumps, NO PAIN!

A few weeks after that I approached a couple at church who were in to running and told them I was interested in getting back to the sport I loved.  I just was waiting for some test results to come back regarding what I thought at the time was a pinched nerve in my neck.

Unfortunately, I never got back into running this summer.  The good news is I still am not suffering from joint pain.  The bad news is these neurological symptoms are even worse.  It is almost like I had fixed one system and what ever was wrong traveled to another body system.  Maybe you lyme literate readers could shed some light on this.  My research shows me how tricky that little lyme bug is.  I'm calling it the ninja disease because of how sneaky and well hidden it can be.

Anyway, this fall I will have to enjoy the fall weather from my window.  I am looking forward to spending time with family and friends Saturday apple picking.  I wonder if a wheel chair can make it through the corn maze?

I'm all done seeking referrals

I'm back from Boston and I'm all done going to doctors who just shrug their shoulders.  I didn't expect an answer from the doctor at the Lahey Clinic, but I was expecting them to at least try and come up with some suggestions of tests or possible treatment.  I can't believe I got another shrug of the shoulders.

I ensured my symptoms were apparent.  I stopped taking the Galaxy impact blend a few days before.  I took off my emitter that I wear to help prevent the muscle spasms and uncontrolled movements.  I walked up the stairs to get to the office.  By the time I actually saw the doctor I looked like a puppet on strings with my out of control spastic limbs!

I looked like a freak show.  I was exhausted.  My ability to concentrate was horrible, subtracting 7 from 100 put me in tears.  All of that and the end result of the appointment was a list of disorders I DIDN'T have.  The only recommendation was to go and see a movement specialist.  Even with the recommendation the doctor informed me she didn't think I had any major movement disorder.  My husband spun a positive light on the appointment in pointing out that now we know for sure what I don't have, it directs us into a more clear direction of what I DO have.

So, now I am playing the waiting game.  My appointment with a lyme literate doctor isn't until the first week in November.   I don't plan on seeing a movement specialist.  My quick research shows me that most movement disorders are actually symptoms of another issue.  Makes more sense to me to find the "issue" and work on that instead of bandaging the symptoms.

The good news is I can now work on getting healthier holistically.  I had stopped using the Galaxy because the doctors wanted to see me at my worse.  The Lyme Literate Doctor I'm seeing understands the importance of taking care of our bodies nutritional needs and would accept my explanation as to why I'm seeing a symptoms reduction without just assuming there is nothing wrong with me sense I'm getting better without medicine.  I'm back on two doses of Galaxy a day, I'm confident I will see my body gain more endurance so that I can get out and about more.

My husband is back from the JUUVA conference in Utah.  He talked to Dr. Booth about the Galaxy and how it could help those with Lyme Disease.  He also talked to a doctor who uses the emitter for acupuncture instead of using needles.  I'm really excited about the LIVE and nine strains of probiotics that it has.  That will be a necessity when/if I end up on long term antibiotics.  I love seeing him so motivated and excited about a company and it's products.  He said many of the people he met out in Utah already knew about me and my health struggles.  It warms my heart that so many people I don't even know are praying for me.  It warms my heart even more that the Juuva Team Extreme has been so supportive.

I want to send big hugs out to those of you who have been helping my family with meals, visits,and transportation.  Scott not having to worry about cooking after working from 8am to 7pm is such a relief.  The girls have been able to keep their lives more normal, still participating in all the activities teenage girls enjoy.

I have good days and bad days.  On the good days I feel hopeful, and enjoy things I took for granted, like cleaning my house.  On the bad days I watch netflix and cuddle with Cato Sweet Potato Chip!

It's a good day! I think my body has a split personality...

My Physical Therapist (PT) suggested I give my legs different names.  They each have their own unique personalities at the moment.  I also think my legs either are bi-polar or have multiple personalities.  Not only are they not behaving the same, but they can't decide how intensely they want to display their behaviors from day to day.  If that's not enough, my arms have decided they want in on the action.  My arms take turns as far as which one will misbehave on any given day.

Maybe you can help me name my four limbs with their unique personalities.

My legs are like fraternal twins.  My right leg is numb all the time.  When I walk I feel like I'm wearing a shoe with a lift in it because I can't gauge how much pressure I'm putting on that foot.  Sometimes the numbness goes all the way up to my knees.  It's pretty annoying.  I can walk on it for awhile, but it quickly becomes very uncomfortable.  My left leg has become a weakling.  It feels normal, but doing leg lifts in PT is super difficult.  Sometimes I can do my exercises, I just struggle more with that leg.  Sometimes I can't even lift the leg a few inches.

My arms have the same symptoms. They are more like identical twins.  What my arms do is take turns being the "sick" one.  My muscles in my shoulder get tight which leaves my arms feeling heavy.  Slowly the muscle tightness and burning moves down my arms and into my hands and fingers making it difficult to use them.

So if all that isn't fun enough, my body gets even more funky when I over do it.  It's like my brain loses the ability to communicate with my arms and legs.  I will want to move in a certain way, but my limbs just don't respond. And then there is what my girls call my "tyrannosaurs arms".  My arms lock up in a bent position close to my body and I need help bringing them down to a relaxed, more normal looking position.  Sometimes they lock up fast.  Sometimes it's a slower process where they flare around a bit as I work to control them.

The past two days were BAD days.  I was tired from the moment I woke up.  Monday I couldn't do anything in PT.  I actually don't remember Monday much at all.  I do remember trying to help with the dishes and supper on Monday and my arms locked up.  My girls helped bring my arms down, and then once they were down I was unable to control any movement.  Chelsea had to help me get back in bed.  Good Times.

Tuesday started out with me locking up while trying to fry an egg.  My legs decided they would join in on the fun and also stopped working.  The girls helped me get back to my room and literally rolled me into the bed. Once Scott got me propped up on pillows I decided I'd just hang out in bed the rest of the day.

And then there was today!  I woke up tired, so I started out slow.  As the morning progressed I started feeling better.  By the time I go to PT at eleven I was actually feeling really good!  I had a great session, even had weights on my legs!  I also WALKED out of there without assistance afterwards!  I needed a nap, of course, but then when I woke up I was able to visit with a friend without my crazy arms waving around.  I only locked up into my "Tyrannosaurus Arms" once and that was when I was laughing.

I love today.  I am clear headed, and I feel strong.  I went downstairs and "helped" with forms.  I got up and down off the mats with out having to think about it.  My legs ALMOST felt normal!  I felt like I could do forms myself! (I didn't, that probably wouldn't have ended well).  Scott had to help me get upstairs, but mostly for balance reasons, I made it up the stairs with my own strength.  I'm sitting here now typing and only my upper arms hurt today.  YAY!

Don't you find it weird?  I do.  I was literally bed ridden yesterday, and today feeling almost normal.  (I still get tired easy).

I'm HOPING it's because I'm taking two shots of Galaxy a day.  Galaxy is a nutritional supplement that is full of super fruits and super foods.  It is the reason I no longer have joint pain.  I use to be a runner, but had to stop running in my late teens because of knee pain. That knee pain spread to my elbows, wrists and fingers. I started taking Galaxy this spring and within a month found I no longer had joint pain!  It was GREAT!  I really felt good enough to run again.  Unfortunately, these neurological symptoms have put a monkey wrench in that plan.  Fingers crossed, taking a shot of it twice a day may help!  My husband is using me as a science experiment.  Our hypothesis is that the Galaxy will increase my endurance.  My symptoms get worse with fatigue.  It doesn't take much to make me tired.  If I can go longer before the fatigue sets in that would be so great!  It's been a few days, but today I have been able to put out more energy without having the neurological symptoms knocking me down.  I've had a couple of naps today, but when I'm awake I feel really good.  I wonder what tomorrow will be like!

Still In Denial, Learning acceptance

I am still struggling accepting help.  I'm still struggling to ask for help.  I feel like I'm taking advantage of people, or that they are going to get burned out helping me.

I think part of why I feel this way is because I can look back at times where I knew people needed help but I was to busy to do anything for them.

I also keep thinking I can do more, push harder, stop being a wimp.  I am actually grateful for my physical therapy sessions where I can constructively see something is wrong and it's not in my head.  I am able to accept there are issues with my body out of my control.

I have an overwhelming conviction over the importance of community.  I see the need to teach our children to give of themselves to others.  I think our society suffers from a chronic condition of selfishness.  The only remedy is SELFLESSNESS.  Have I been putting actions to the words I have no problem saying?  I don't know.

I do know that as I sit here I have plenty of time to think about how I have been managing my time.  I have no answers as to whether or not I've been to busy.  I have no answers because I don't know how I could have changed things to be less busy.

Never, has God more clearly spoke to me then He is right now.  I've been feeling overwhelmed and scattered for the past year and I've been struggling in choosing where to put my attention.  I have been so busy I haven't even had time to stop and evaluate where I'm at and where God wants me to go.  I have been praying about this and asking for direction.  God has literally grounded me, making it impossible for me to over do it.  I am being forced right now to take the time I need to get myself back together and get refocused on following the crazy path God's put me on.

It is frustrating, depressing, and boring, to be literally trapped in my home.  I feel like I have a leash hooked to me that only lets me go so far or do so much before it pulls me back.

I can't drive which is hard as a parent of teenagers.  Knowing my kids are at after-school activities or friends houses and being unable to go get them or go check on them is maddening.  I can't take them to the store when they need something I can't help with transportation in any way.  Last night my daughter needed to go to the ER and being unable to take her was horrible.  My husband took her of course, but it was ten at night, he had been going all day and had to get up and work in the morning.  I felt so guilty.  I couldn't even go along for moral support because we had just come back from visiting with friends and my body was to fatigued to get out of bed.

I want to do fall activities with my family.  Right now, there isn't much I can do because I need a wheel chair and don't have one yet.  I can't go to a store that doesn't have wheel chairs and when I'm in the store I feel so helpless as I just sit there directing my husband who is pushing me around.

TRAPPED.

So, I'm sitting home, contemplating, praying, waiting.  My dog, Cato, and I are getting lots of bonding time!  Seriously, I always want to live with purpose.  I trust there is purpose in my current situation so I am not worried.  At least at the moment.  When God strips you of everything that is in the way of you and Him you can put negative emotions up as your new barrier, or you could look straight at God and remain focused on Him.  I can't socialize anymore, talking causes muscle spasms that lead to severe fatigue.  I can't go places often.  Sometimes I can't even type on the computer.  There are days that all manners of communication are impossible.  God has something to teach me in this, I will take the lesson gladly.

I am a determined stubborn person.  Don't think I am laying around waiting for this to get better.  My goal is still 4th degree black belt.  I still want to actively help others.  I'm just using this time to hang out with God and get my road map ready.  I'm just preparing for the next leg of my journey.

From I'm doing ok to I'm ready to drop kick someone

You know I'm having a good day if I blog.  That means I am having some control over my various limbs.

When people ask me how I'm doing I usually say I'm doing good.  I answer this way because despite my physical limitations and struggles, mentally I'm in a good spot.  Right now, if you were to ask me how I am doing, I'd probably tell you I'm upset and frustrated.  This isn't because my symptoms are worsening, it is because of my frustration over how the medical community is responding to my worsening symptoms.

I think the answer "I don't know" is a respectful and honest answer.  Not knowing the answer to a problem is fine, that means we just need to keep looking.  I have a very difficult time when someone assumes that because they didn't find the answer they were looking for that must then mean there is no answer to find.  That is a very self-absorbed response to the dilemma of there being no immediate answer.  When I went to the neurologist I have been seeing, instead of telling me she didn't know, she said "there is nothing wrong".   For the first time in this whole mess I cried.  I cried because her response told me she was all done looking.  I cried because her prideful remark was presumptuous and arrogant.  I cried because I was disappointed that the doctor I trusted was done trying to help me.  She didn't even offer to make a referral.

She told me I was sitting around to much and that my symptoms were getting worse due to this.  She advised that I start pushing my limits a little to start building my endurance and strength.  I told my physical therapist this.  She had been after me to not over do it.  To learn to recognize my body's signs that it was time to stop.  The concern that fatigue made my symptoms worse guided treatment.

We decided to push it.

Pushing it was really not doing much more, but a little more was all it took to bring on new symptoms.

So now, along with loosing the ability to use my legs (a normal consequence of overdoing it), I developed severe muscle spasms.  My legs and arms flared uncontrollably. I was unable to use my right hand at all.  Talking made the muscle spasms so bad it looked like I was having a seizure.  I even got to the point I couldn't talk or feel my tongue.

That's what I got for "pushing it".  I went from the morning where I could walk almost normally, without assistance, to a few hours later being bed ridden, and then a few hours after that needing an ambulance because although I was cognizant of my body and surroundings, I was unable to communicate that I was aware and alert, and my body was spasming uncontrollably.

Fast forward to the ER.  The second time in this process I have cried.  I didn't cry because of what was happening to my body.  I cried because of the response I got from the practitioner on duty.  She looked at my husband over my shaking body and said, "all the testing done doesn't show anything wrong, the doctor you saw this morning was aware of your condition and didn't want anything changed, so what is your concern?"

I do have to say that the family doctor I'm seeing has been supportive and encouraging to me in my desire to look at every possible solution.  She did know I had worsened due to my physical therapy session, but she hadn't seen the severity the muscles spasms had reached.

I was sent home with more muscle relaxers.

And here I sit.

Am I upset I'm ill?  Of course I am.  Am I depressed over it?  No, I'm not.  I'm to proactive to have time to allow myself to be depressed.  Am I hurt over the attitudes I am facing with the professionals I am seeing?  Very!

Today I am doing ok.  I am walking a bit better.  My muscle spasms aren't to bad unless I get talking.  Rest will hopefully get me back to where I was a few days ago when I was able to leave the house a few hours at a time and walk with a cane.

I am grateful for all the help and offers for help that my friends and family have offered.  I know many of you have told me to call....I have to be honest, I hate talking on the phone.  I may call if I need something but just chatting is to much, I can barely hold the phone for very long!

Pray Scott keeps getting chimney calls.  We need to get the jeep fixed before we travel to any out of state doctors.  I have been moved to the top of the cancellation list for the lyme specialist I'm waiting to see.

I will sit here now and read a book or watch a movie while I wait for my wonderful husband to get home!