My Letter to our Maine State Representatives, Have You Contacted Your Representatives Yet???

A year ago I sent you a letter sharing my frustration over the current climate in regards to lyme disease in the State of Maine.  I, after thirty years of illness, finally was diagnosed with late stage neurological lyme disease along with bartenella and babesia.  My frustration centered around the lack of knowledge in the medical profession when it came to the inaccuracy of lyme testing, knowledge of the clinical manifestations of lyme, and their complete lack of ability to properly diagnosis and treat lyme and it's co-infections.  

If you remember my letter from last year then you remember I was a third degree black belt and owned a successful martial arts school.  My quick slide downward that left me so disabled I couldn't walk and at times couldn't even use my hands to do simple things like feed myself, was nothing less then scary.  The doctor's I saw here in Maine said things to me that should be deemed unethical at the very least.  For example, a neurologist told me I couldn't walk because I was sitting around on the couch to much and I need to get up and do more.  When I attempted to explain my vertigo to this woman she told me that the room felt like it was moving because I was moving. (I was shaking at the time) She told me to stop moving and the room wouldn't spin anymore.  My favorite was the ER doctor, who, while I was in the middle of a partial seizure, told me I wasn't having a seizure and to just relax.  I, like so many other's in our state, no longer utilize the emergency department or specialists due to the blatant mistreatment we receive.

Here I am, a year later, and although I have a long way to go in treatment, I am markedly better!  I can walk again, I can hold a conversation, I rarely have a seizure, I am now able to control the movements in my arms and hands, I can drive, go to stores, attend church and even help teach taekwondo on a limited basis.  I have improved so much because a doctor out of state listened to me, and was able to properly diagnosis me.  I have been on antibiotics for a year and am continuing to improve.

Every state in New England, and now also New York, has laws in place to protect doctor's who treat lyme based on the ILADS guidelines instead of the outdated but insurance recognized IDSA guidelines.  Maine currently has no law to protect our doctors.  This forces those of us who are lucky enough to even realize we might have lyme, to leave the state if we want the best treatment available.  The doctor's in Maine who are brave enough to treat are limited in how aggressive they can make treatment.  They are unable to prescribe all of the medicines available because they don't want to draw attention to themselves and have insurance companies file a complaint with the Medical Board.

I, over the past year, have met many doctor's in our state who have privately thanked me for advocating for change.  They know lyme disease is a major medical problem but are unwilling to say anything publicly out of fear of retribution from either their colleagues or from the licencing board.    If they could safely treat  based on their clinical judgment in the state of Maine they would probably do so!

We are left with limited resources for those in our state who are sick.  I get weekly messages from people I don't even know, asking where they can go to be evaluated and treated if necessary.  I am unable to be of much help because the answer is so overwhelming and down right difficult to soak in.  The truth is, if you want help, the best help is over the state line and it will cost you out of pocket to be seen.  

Last year I was angry, but this year I am an angry mama bear ready to roar.  Over this year I learned that lyme can be past during pregnancy.  Both of my daughter's have had long term chronic health issues.  It didn't take much for me to put two and two together.  I had them evaluated and tested, the tests came back with a roaring positive for both of them.  After all these years of people not believing them when they complained of ailments, being misdiagnosed and labeled, it appears they were sick all along.  One of my daughters is still a minor, so I live under the constant worry that if she has to go to the ER I will be given trouble for having her being treated for a disease Maine Doctor's say doesn't exist.  Funny thing is, her lyme doctor lives in the State of Maine but practices medicine over the border in New Hampshire so she can freely treat lyme patients without fear of retribution.  My older daughter, who is eighteen, just recently saw a specialist for something not lyme related who was upfront and told her "she didn't believe in lyme.......some call it lyme, I call it anxiety",  and also made the comment, "well when that doctor in DC stops pushing so many chemicals into your body......".  This ISN''T ok!

It has been said that doctor's who treat  lyme based on their best clinical judgement are either quacks or are trying to profit off sick patients.  I am sure there are some unethical doctor's out there.  The doctor's we have had the privilege to work with have all been compassionate and obviously heart broken over how this disease is ruining lives.  Many doctor's who treat chronic lyme do so because they once discovered they were sick because of lyme disease.  Once they got better they quickly began treating lyme patients themselves.  My doctor was one of these, once sick, doctors and she works harder on my behalf then I could ever financially compensate her for.  She has brought me back from the edge of death and continues to make herself always available as I finish this journey I am on.

Patients in the State of Maine shouldn't have to rely on an underground network to get information about doctor's who treat lyme.  Doctor's should have the right to use the degree they earned to treat patients based on the patients specific symptoms and physical makeup, not the cookie cutter recommendation that leaves no room for clinical judgement.  

I implore you to strongly support a bill that will be introduced before January 2 that would ask to have doctor's protected when choosing to treat lyme as a chronic condition.

Lyme and Christmas

I wish it were January....or February, or March...any month but December.

I wish we lived in the middle of no where with no tv, internet, or radio, sheltered from how the rest of our society is spending their time and money this month.  

I wish we hadn't created traditions which now feel like expectations that will soon be the cause of disappointment.

I wish others would talk a little less about what they are buying, what they are doing, how they are spending their time.  

I wish I could crawl into a hole with my family and wait for it to finally be over for another year.

Is this a depressing blog?  Maybe.  Are these statements a true representation of how I feel?  Yes, and it is how thousands of people feel: people who are your coworkers, your neighbors, your friends, even your family.  You are surrounded by people who feel this way, I'm just the crazy lady who has no problem talking about it.

I have struggled with whether or not I should share my feelings.  I don't want to be seen as someone looking for attention or sympathy.  I don't want to come across as being negative.  I don't want to make you feel bad if you are enjoying the Christmas Season.

What I DO want to do is to be a voice for all of us who are struggling to fake it until the torture is done for another year.  I want to be a voice in your subconscious to help you think twice about your priorities during this festive time of year.  

Many of us who suffer during Christmas cover our suffering with wrapping paper that looks joyful.  We use the wrapping paper to hide an aching heart that feels ashamed to admit that the season is not bringing family, food and/or gifts.  We play the part and nobody even realizes we are acting.

Being a Christian I am using this time to really try and find joy in the reason for the season.  I'm going to be honest, I am learning so much about Jesus, but I would just assume learn and grow closer to Christ without being surrounded by what this modern society has created Christmas to be for this generation.

I think I need to rip off the wrapping paper and show what it is to experience Christmas from my current point of view.

I am talking from my experience, but there are many circumstances that cause people more pain then joy during the month of December.  So as I continue to share, just remember that what I am saying is true for many people in many different situations.

I want to share what it is that is making this time of year so hard for me, but I am struggling to do this.  I think the reason is one of my problems.  I feel guilty for feeling badly.  Who am I to complain when there are others who have it worse then I!  I feel spoiled for feeling badly when I have so much to be grateful for.  If I know this then why do I still feel so bad?  Honestly, I don't know why.  What I do know is that although I have a head knowledge that things could be worse, my heart still hurts.  

I have spent a lot of time reflecting on this as well as trying to get past it.  I think what makes it hard is seeing how so many in our society go and spend money with no real understanding of what it means to be in need.  Yes, people give to charity and do things to help others.  I am not discounting that at all.  What is hard is I know that what is true is that people rarely give until it hurts.  I mean, we give out of our comfort but how often do we willingly go without something in order to give to someone else?

Before I go on, I feel I need to share what I am thankful for.  I have a warm, clean safe home to live in.  So far, to date, we have had the money to pay for doctor's, meds and supplements.  We have a family who loves and supports us.  We have friends who have stood by us.  We have been saved from hearing the comments of others expressing doubt or ridicule over our diagnoses'.  As of today we have been able to have some food in our cupboards. I write these things I am thankful for thinking about so many people who I have met in the lyme community who don't have ANY of these things.  So, who am I to feel badly?  I don't know.  It doesn't change the fact that I do.

It's hard to see so many cries for help from people dealing with this disease and be unable to do much to help.   I am not only feeling my own sorrow, but the sorrow of segment of our population who are sick and have lost everything.  People with degrees and professional careers who have spent their last cent on treatment and now have nothing and are still sick because the money simply didn't last as long as it takes to find the treatment that works best for their body and then stay the course and pay for treatment for the needed duration.

So, maybe I'm scared.  Every month we don't know if we can pay for appointments and treatments. What is going to happen when Jenna's insurance stops paying for her IV meds?  Here she sits making progress, with the pic line in, and I have no idea at all how we are going to pay for her meds this month.  As it is, we often do some serious juggling to pay for food, meds, supplements, and appointments.  I am really trying, on a daily basis, heck on an hourly basis, to put my trust in God and to let go of worry.  I'm sorry, but sometimes that is really, really hard.  It isn't hard for me to trust God, it is hard for me to trust myself when making decisions on how to use the money God gives us every week.  For instance, should I be spending any money on presents when I don't know how to pay for our medical needs this month, or next month, or the month after.....

I am frozen, not knowing how to proceed.  If it were just me I would be fine, but it isn't just me.  My kids have awesome family so they will get gifts, many kids don't have what my kids have, but it is still hard to accept that our Christmas Day traditions will have to be different.  Should we put up the tree, should we not?  Should we hang the stockings, should we leave them in the box?  Should I try to think of something new and different to do Christmas morning and create a new tradition? (Ideas welcome)  How can I make this a time of joy for my kids who are already suffering so much.  This is NOT a cry for help, there are to many kids out there who need it more then mine.  I am sharing these very personal thoughts in hopes that you look at how you spend your holidays and I hope you are moved to give to those in need as much as you are able to give to your family.  

I am not simply heartbroken due to my own situation, one that I know I will get through and my children will get through. I am heartbroken for the plight of everyone who lives in a country of abundance but are unable to put food on their table, a roof over their head, or a gift under the tree.  Many of these people work hard and are not suffering due anything they have done wrong.  They are looking at the great amount of waste that is produced during this season.  From how much plastic packaging a small toy is held together in, to the amount of gifts bought that are most likely to be returned or not ever used, to the amount of food wasted or binged on.  You are buying your 3rd winter coat, and I am sitting here right now and I don't own a winter coat.  (DO NOT BUY ME A COAT! I don't go outside much this sick anyway! lol) I am sharing this to give your perspective.  I have struggled in how much to share, but I just can't quietly sit and watch and not say something.  I only desire to shock you enough to stop you in your tracks and truly evaluate how much money and time is being spent on stuff for you and your family and how much you are able to give to others.  I have been given a gift in this pain, and that is I now understand, at a deep level, how those who are able to celebrate Christmas the traditional way with food, family, and gifts are viewed by those who are in need.  I never was someone who had a lot, but I had more then enough.  I still have more then so many others.  I wish I could just know how we were going to finish paying for my family's lyme treatment, instead I have to patiently wait in faith and only think about my needs today, not worrying about my needs tomorrow.

If this blog brought you down a little, I won't apologize. Until your heart is heavy over the plight of those around you won't experience the true meaning of Christmas.  

How Am I Doing?

I am so thankful when people tell me that I am looking good.  It acknowledges that I truly am getting well.  I, unlike many who suffer from lyme, could not hide my illness. It was visible in my uncontrollable body movements, my twitching, my constant seizures, my inability to communicate, my need for things like sunglasses and ear plugs even inside.  I was very, very sick.

Now, a year later, I can walk normally for short distances, I can hold simple conversations, I can do my hair and make up, all of my movements are controlled.  It's been a year, I look like I use to, I should be almost better, right?

The answer is no.  I have at least another year of this battle left.  It's hard for even me to understand and accept that I still am sick enough to be disabled.  I have to constantly remind myself that I still have more healing to do. Because I struggle with accepting I am sick I am not surprised that other's don't think of me as someone who is sick.  I usually only leave the house on days I'm feeling semi decent! Most of you haven't seen me on the days I am home unable to even contemplate leaving the house.

 People don't usually ask me how I am feeling.  Instead they say things like, "You look great!", "It's so nice to see you feeling better!", "I'm glad to see you have gotten past this!"  Do you notice that none of these comments are a question, they are an exclamations.  As well meaning as people are, they are making an assumption about how I feel.  For the most part I don't mind, I am glad to be reminded how far I've come, it helps me not to feel discouraged.  Sometimes, though, I have people make these comments and I would really like to openly share with them how I am actually doing.  It's awkward though, because it feels like I'm telling them they are wrong, or at the very least I'm being a downer.

I want others to know how I really feel because I still need support and prayers.  Not only this, I have an overwhelming drive to truly educate our society what this disease does to a person's body.  Also, most of the patients with lyme feel how I feel right now.  They didn't get as sick as me, so sick that it was visible to others.  Most of these individuals look no different then someone who is healthy.  This doesn't mean they aren't miserable, they feel like the walking dead.  My family jokes about this.  We think Lyme is the Zombie Apocalypse because most days, even though we are alive, we don't feel like we are living.

I am writing this blog on behalf of thousands who are suffering and their friends and family don't understand.  I am also writing this on behalf of my children, whom we sought medical treatment for lyme as soon as we knew they were at risk.  They to, don't always look sick.  They often make comments to me that it is hard because people don't get it and they worry if they try and explain how they feel they will sound like complainers.

So, the question is, how does it feel to have lyme?  First, be advised, most lyme sufferers are also dealing with multiple co-infections.  These other infections have their own specific symptoms, but also many of the symptoms over lap.  For the purpose of this blog just consider any symptoms I talk about as being a part of lyme disease and co-infections as if it were one disease.  

There are so many symptoms, and no one patient has the same experience when living with these symptoms.  Some symptoms are constant and some come and go. The symptoms are transient, occurring in different parts of the body at different times.  I am going to explain how it feels to live in my body, although you are reading about my experience with this disease, we, as a lyme community, have significant similarities in how the disease manifests itself.  

The first thing most lyme sufferers deal with is daily pain, significant pain.  The pain can be bone pain, muscle pain, or nerve pain, or all of the above!  For me, my most common symptom is deep muscle pain.  I can only compare it to what it feels like after doing a extreme work out.  Sometimes, my arms feel like they are burning, especially when I am using my hands.  Right now, for instance, I am typing, which is utilizing my wrist and arm muscles.  My wrists both hurt, and my arms have gone past being painful to burning.  I take muscle relaxers which use to help, my body seems to not respond to them as well anymore.  My back muscles almost always hurt but some days are worse then others.  Today was a bad day for my back, the muscles between my shoulder blades are tight and painful.  I can do a lot of things now that I have improved but I still can't do things like scrub pots and pans.  If I overuse these painful muscles they become so weak that I can't use them at all.  I also, at times, have muscle pain in my thighs, but not as often.  The other common muscle pain I have can only be compared to what it feels like to have the flu.  Your whole body aches making you miserable in a way that would keep most people home and in bed.  I have learned to function despite these types of muscle pain but that doesn't mean it isn't hard.  Sometimes when someone tells me how good I look I want to scream, "I DON'T CARE I AM IN SO MUCH PAIN!"  Don't worry, I won't do that. 

Fatigue is my second most significant symptom.  It is never the same from day to day.  Some days I feel overwhelming exhausted all day and can't get off the couch or our of bed.   The thought of doing anything brings me to tears because I'm just so tired.  Imagine taking Tylenol pm a couple of times during the day and then go function.  Often I am so tired I have to sleep, otherwise my body will literally stop working.  Other days the fatigue comes in waves.  We may have moments, or even a few hours, where we can function.  If we don't pay attention to our bodies and stop when we feel the fatigue sneaking in we will regret it.  That happened to me today at church.  I didn't realize how tired I was until I sat down and the pastor began preaching.  Keeping my eyes open was making me sick.  Scott barely got me out to the car before I found myself unable to walk.  Getting into the house was a challenge but I made it to the couch and didn't move again until I had eaten and had a long nap.  If I don't rest when my body demands it I simply become unable to move.  I have seen both of my daughters experience this as well.  It's frustrating for all of us.  Rest is not an option for us.  It is literally a necessity or we will find ourselves very sick.  Often when you see me out of the house it's because I have spent all day, or even the past couple of days, in bed.  When I have to be at taekwondo in the evening I spend most of my day resting so that I will have the energy I need to get through teaching a forty minute class.  So far, I am only able to get into class about two times a week.  

Most mornings the lyme patients feels like they are waking up with a hang over.  It takes us a few hours to wake up, eat, and get ready for the day....that is if we are able to do all of these things.  Chelsea misses a lot of school due to how difficult it is for her to wake up and function.  If I try and rush through my morning routine I end up dizzy and nauseous.  I have to take multiple breaks while getting ready in the morning.  Usually I have coffee in bed, and then I watch the news for thirty minutes.  Then, I get up and make breakfast.  After eating I go back to bed and take my first nap of the day.  It is usually pretty short but it is much needed.  After my nap I get up and do my showering routine.  At this point I usually can predict how the day will be.  If I am able to get downstairs and on the couch I have a good chance of having an ok day.  If I go back to bed after my shower I usually stay in bed most of the day.  Whether upstairs or down I will next do my morning devotions.  I have to work hard to stay awake during my Bible study time, and when I am done it's time for another nap!  I then have lunch, a break, after I attempt to do something productive such as paper work or a load of laundry.  By one I am ready for another nap.....can you see the pattern?  This goes on most of the day, I feel the most energetic in the evening.  My daughters seem to feel similar.  

My last, most common symptom, is the nerve pain, numbness and tingling.  It happens in all parts of my body, right now my arms and fingers are tingling as well as my right foot.  The right side of my face is numb and I have some nerve pain in my eye.  My right foot is also numb.  These symptoms are annoying, but bother me the least.  Well, except when the nerve pain in my eyes is bad, that is super annoying and uncomfortable.

Wait, there's more!  How can I forget sensory overload?  Sound feels like it is literally inside me and pounding to get out.  At times it is painful, along with being distracting making it hard to zone in to one particular noise. Light sensitivity is also a big issue.  It is painful to be outside with out sunglasses.  I joke with my girls about how we are all vampires because we have to shield our eyes from even the smallest amount of sunshine.

Although these are my most common symptoms, they aren't my only symptoms.  Lyme and co-infections can affect every organ and every body system.  Lately, for instances, my babesia symptoms have been flaring and I am experiencing hot flashes along with symptoms that feel like I am having a heart attack.  I have a resting pulse rate that is often well over 100, and I've been blacking out a lot. This disease mimics so many other diseases and conditions that it makes the person suffering unable to function normally.

Here I sit, with only the first part of this blog done.  I wanted to talk about the emotional aspects of dealing with symptoms and then end with the spiritual BENEFITS this disease has allowed me.  Unfortunately I am to tired to write anymore so I will do a follow up blog to finish all the thoughts I wanted to share.  As always, if you have read this far then I want to say THANK YOU! It shows you care enough to want to understand.

Purchase this book and proceeds go to multiple families treating lyme disease!