Lounder Family Update....The Never Ending Roller Coaster Ride!

It has been a long time since I have written in this blog.  There are many reasons for this.

• I had a rough summer due to a set back caused by my ceasing to take inter-muscular medication.
• Fall is a busy time of year because Scott cleans chimneys.  What little energy I have has been used to help with classes.  I only just recently have felt up to turning the computer on.
• Both girls have needed a lot of my time and energy.
• I have been focusing what I have left for time and energy into a blog that shares how two families have come together to support each other as they navigate the road Lyme has put us on.

Disclaimer: I am finding concentrating and reading this as I write difficult.  I am going to do my best to finish writing and editing it, but if you are reading this and finding it confusing or full of errors then understand it's due to my neurological symptoms.

So, I wrote a couple of blogs last summer and talked about having a down turn in progress.  I quickly looked back and didn't notice that I ever explained why I had a down turn.  It was due to the cost of the Bicillin injections.  The already expensive medication steadily increased in cost until I found myself needing to pay $1000 a month for this medicine alone. I asked my doctor change me to solely oral medication.  She gave me her concerns, but understood that I couldn't pay for this medication anymore.

I thought that worse case scenario would be that I stopped making progress.  I could live with that because I was at least able to function a little.  I felt that I needed to at least try going this more cost efficient route. At this point there were three of us in treatment and I didn't feel right taking such a high percentage of the finances.

Unfortunately, over the summer I quickly declined.  At first I hoped it was due to some other med changes that had been made, and maybe some of it was, but by the first week in August I knew, for sure, that it was due to the oral medication not being enough.  Not only was I not improving, I was quickly returning to being as sick as I was at the beginning of treatment...if not sicker.

WARNING: The video below is disturbing to watch.  It is part of the worse seizure I have ever experienced.  I am sharing it for one simple reason.  TO TRY AND CATCH YOUR ATTENTION.  Until this disease is recognized and given the same attention as other serious illnesses I will do all I can to impress upon you the importance of not only advocating for yourself, but for all of us suffering silently.  This could be you!  Also, I want to be clear that I don't feel like I had any other choice but to return to more aggressive treatment no matter the cost. It was due to the IDSA and CDC and their refusals to pay attention to current research that my insurance is not obligated to pay for any medicine to treat Chronic Lyme Disease.  This should never have happened.  I should never have felt forced to stop the treatment that was causing me to improve. FYI: I am not screaming due to pain, it was a part of the seizure

Needless to say, I immediately told my doctor I was ready to look at my options. I was just going to trust God to provide the means to pay for the needed medication.  My life could be at risk if I didn't go back to aggressively treating this disease.

Because IV medication is more affordable, I started the process of getting a pic line placed.  I did my best to trust God and not worry about the fact that I knew Jenna would be needing IV medication as well. Paying for both of us to be on IV meds would cost the same, if not more then, the Bicillin injections.  During this time, my husband's best friend was also beginning to treat his Lyme disease more aggressively.  He told us he wasn't doing IV, nor was he doing Bicilin, He was doing a common IV antibiotic as an intramuscular injection.  His out of pocket cost was less then the IV meds would be.  We checked our insurance plan and discovered they actually covered this shot!  I contacted my lyme doctor to inquire if this could be an option for me.  Thankfully, she told me it was.  She explained that she didn't suggest that medicine anymore because it is even more painful then the Bicillin was and also I would need at least one shot a day.  Most patients couldn't tolerate this for as long as it would take to get to remission.  By now, though, my doctor had gotten to know me well enough to know I would stubbornly put up with any amount of pain if it meant I could get well.  She agreed to let me attempt these shots.  Here it is, after three months, and I am still getting them every day and slowly, but steadily, improving.  I am nervous that at some point I may need to go to the full dose, which may mean two injections a day.  I will just deal with that when and if the time comes.  For now, I am so grateful that God showed me that He will direct my path and will meet our needs.

Now let's catch up on where the girls and hubby are at!

Chelsea:

     Started high school in the fall, and then slowly took a down turn.  She did manage to play volly-ball and made it to most games. We are thankful to her coach for being understanding about her frequent absences.  We were very sad for Chelsea when she had to make the decision to drop the fall musical.  The visual and performing arts are Chelsea's passion.  Dropping out of this performance was a decision not taken lightly, but it turned out to be for the best.  She would have struggled to keep up with the intense practice schedule.  Chelsea's first quarter report card showed how hard she was working, all of her classes had grades of B's or better despite how often she missed school.  

     The past three weeks have been extremely difficult.  Chelsea has only been to school a handful of times.  We are grateful that the school administration allowed Chelsea to have a tutor who can come to the house and help her stay caught up in her school work.  Her Lyme doctor is still trying to narrow down why Chelsea has been having such a hard time.  We've ruled out Mono, but are still checking for other illnesses.  We haven't ruled out Babesia as being the culprit, but Chelsea's Lyme doctor doesn't want to automatically assume that her symptoms are due to another tick born infection.  For now, we have put treating Chelsea's Bartenella on hold, and are going to get some more blood drawn tomorrow so her doctor can continue to piece this puzzle together. I'm not going to lie, it's in the back of all of our minds that maybe the oral medication for Lyme just isn't enough.  That would mean Chelsea would either need IV medication or Bicillin injections.  The shots I am using are off the table for both girls.  I would never put them through that daily pain and I also don't think their small frames could tolerate it for to long.  These shots are killer on the hips.

Jenna:

     Finally had her first appointment with a Lyme doctor.  She had slowly been declining over the summer due to a number of reasons that would make this blog needlessly longer then necessary.  One thing we  knew by the time we arrived in our Nations Capital, Jenna was very sick with a neurological disease that we strongly suspected was Lyme/Bartenella/Babesia.  Jenna was passing out regularly (her lyme doctor believes that she is actually having a small seizure when this happens), she was no longer able to walk far without her legs giving out, and her sensitivities to light, motion, and sound had reached an all time high.  

     Upon examination our Lyme Doctor found numerous neurological issues.  I have struggled not to hold on to anger over the fact that I KNEW other doctors had seen these things and never expressed concern.  In fact, although looking back I now know why they triple checked certain things, at the time the doctors never even told me what they had discovered.  Anyway, there was no question as to the cause of Jenna's symptoms now and after waiting a month for all the blood work to come back we knew for sure that Jenna had Chronic Lyme Disease.  It was official, Scott, Jenna, Chelsea and myself all tested CDC positive for Lyme.  Jenna "beat us all" with NINE bands on her Western Blot!  We were so thankful for this because that meant her insurance would cover the pic line being placed as well as pay for 28 days of IV meds.  This diagnosis came just in time.  The trip had worn Jenna out and she had developed a new symptom, losing the ability to speak and speaking with a stutter.  I am posting a video with Jenna's permission, actually by her request, for the same reasons as stated above.  Please scroll past if this would bother you to watch.  Understand, my family and I are MAD and we are going to keep crying out as loud as we can until our community is as mad as we are! I do want to let you know that this symptom hasn't come back since we were able to come back home and Jenna has started treatment and been able to rest quietly.  It would, most likely, quickly reappear if her treatment were to stop.  

Scott: He has been doing steadily better since he changed from his first Lyme doctor to the Lyme Doctor Chelsea is seeing.  He has struggled to spend the morning's cleaning chimneys and the evenings teaching Taekwondo, but I have helped at night and he has had help on his busy days getting the chimney's done.  We've only had a few days of him coming home shaking like he use to.  Most recently he starting having B12 injections and for the first time he is reporting that he is feeling like himself again!

And now, to share where Jenna and I are after we both had an appointment today!

       I am slowly and steadily improving.  It is slow going because I am really struggling with the medication that I pulse forcing me to not be able to increase the dosage of those meds to the level that is needed for optimal improvement.  If I could stay in bed and not take care of anyone else but myself I would be able to push a bit harder on these meds, but after being unable to do anything for so long I need to be present to help the rest of my family as they are also in treatment.  I have had an increase in fatigue and memory issues, but my doctor suspects it's simply due to the stress I am experiencing that comes with having two sick children.  I will continue to rest all I can and not to push myself to hard.  When I am frustrated I remind myself of all the small milestones I have made: teaching class from the standing position instead of from a chair, helping in Taekwondo at least once - if not twice - a week, going to church two weeks in a row, experiencing severe fatigue on days where I needed to function on behalf of my kids and not having a seizure!  

     I am very excited to share how Jenna is doing! She had a rough start to her treatment.  Not only did she have a week of severe nausea and vomiting, but she developed thrush and a throat full of ulcers.  Her doctor switched some of her meds and we were finally able to get the vomiting under control.  Here's the good news, the lucky duck had a couple days of severely herxing..and then bounced back becoming more herself then we've seen in a long time.  Don't get me wrong, her first huge bacterial die off was intense.  It was like having a Alzheimer's patient in our house.  Luckily, for her, she has no memory of her adventures and we are now able to joke about it.  She also is sleeping like a rock star.  I am joking that my 18 year old finally learned how to sleep through the night!  

     Telling your Lyme doctor that you are already feeling better means one thing, that it's time to double your dosage and add more meds in!  We are hanging on tight as we prepare for another rough ride while dealing with Jenna's neurological symptoms, but the good news is that if she keeps going like this she may find herself in remission in less then a year!  I was honestly concerned that the fact that Jenna literately cooked in this crud while I was pregnant with her would make beating this disease difficult.  Apparently, being young, Jenna has a stronger immune system and as long as her body continues to be able to process all of this out as easily as it is so far she may finally find something actually goes easy for her for once in her life.
     Now the bad news, her 28 days of insurance coverage is almost at an end.  We will be forced to have to pay out of pocket to continue her IV treatment, and we are doubling the dose! YIKES! As always, I am trusting God to figure this out for us.  It does break my heart to see my sick child trying to find ways to make money because she knows the money isn't there.  Her new husband is looking for seasonal work, he is leaving for boot camp in February at which point they will have an income although they will also have all the expenses associated with moving out on their own.  We are definitely hanging on to the hope that if we can get through this winter, Jenna may actually be weaning off treatment by the time they move.

Wow, if you are still reading this then you must really care about our family.  Thank you! Please keep us in your continued prayers!

Will I Still Have Faith if I Don't Get Well?

     Although I was told how long treatment would take, and even though I understood that recovery was a journey full of set backs, and times of regression, and despite learning how my disease could affect me differently every day, I still remained blindly hopeful that I would be the exception to all the rules.  Probably my expectations of a quick and easy recovery were grounded in how quickly I improved in the beginning.  I figured that even though bad days would happen, I would continue to get well at a steady pace.

     Surprise! I am definitely not an exception to the rules!

     As soon as my recovery plateaued my doctor changed my treatment regimine.  Feeling a little better doesn't mean I'm better.  It means those darn germs are good at hiding, buried deep in my body tissue, waiting for me to stop bombarding them with medicine.  Time to out-ninja them and change my arsenal.   The good news is, we are killing them again!  The bad news is, I am spending my summer stuck at home.

     I spent all winter being ok with being housebound.  I looked forward to the summer and hoped to be well enough to at least enjoy sitting on the beach.  I wasn't expecting to not only regress, but regress to the point that my seizure activity would return.  A month ago I was celebrating being able to shop without a motor cart, now a trip to the store is overwhelming.  I am watching the majority of my friends on Facebook enjoying the beautiful Maine outdoors trying not to be jealous.

     I spent a few weeks trying to force myself to do the things I felt I should be able to do.  Of course, my body didn't cooperate and that caused me to be frustrated and a tad depressed.  I finally accepted the fact that this summer wasn't going to be what I had hoped and I let go of expectations that were impossible to meet.  I then began to contemplate what God wanted to teach me.

     The first thing I did was make the decision to spend my time in bed growing closer to God.  I've been listening to sermons online, reading online Bible studies and praying.  The first realization I had was that my desire to get well was largely due to my desire to control my life again.  I wanted to work and be in charge of my income.  I am emotionally tired from daily having to pray and have faith that my needs would be met.  Scott and I have often joked about God's sense of humor, waiting until the last possible second to meet our need.  I was reminded, through my studies, that God does this because He wants to ensure all credit is given to Him!  What better way to grow our faith, and the faith of others, then by miraculous intervention.  It is so hard to live this way, but I would rather live this way and have what we need then try and control things myself and not be able to pay for all four of us to be treated for Lyme Disease.  I know that if I were left in control we wouldn't even come close to having enough money.

     The bedroom in our new home is big enough for me to keep my book cases in it.  I have been sitting in my bed looking at the books on the shelves for weeks and it only just recently occurred to me that I have plenty of time to read.  Over the winter my ability to read was hit or miss, this summer that is one thing I have been able to do more consistently.  My grandparents had a huge collection of books and I claimed many of them.  Almost all of their books were of christian origin, many from over thirty years ago.  I realized I had the treasure of all the literature that contributed to my grandparents faith.  What a legacy left for me!  What better use of my time then reading these christian works written so long ago.

      The first book I randomly chose was a collection of three condensed books.  I picked away at reading them slowly, until yesterday.  Yesterday I became engrossed in a book titled, "His Banner Over Me" by Martha Snell Nicholson.  The first thing that drew me into her story was her childhood love of the outdoors.  Just like I always felt I was a "kindred spirit" to Anne of Green Gables, I quickly felt a connection to Martha Snell.  I thought, at first, her story would be a story of how she worshiped God through her poetry, which I assumed was inspired by her love of nature.  It didn't take long for me to discover that our love of nature wasn't all we had in common.


     Martha was a sickly child who often missed school.  Despite her many absences, she strove to achieve good grades.  She also loved studying philosophy, sociology, and psychology.   Our childhood and teen years were extremely similar.  As a young adult Martha watched her mother die from cancer.  This left herself and her two sisters home to care for their dad while attempting to attend school.  Martha took a job working in a library, during this time her sisters left home and Martha took on the household duties while continuing to work.  When one sister returned home able to assist with these tasks, Martha's body final gave out and Martha found herself sick and bedridden.

    A new doctor was called.  Like most chronic lyme patients, Martha had seen many doctors over her life and been given many diagnoses.  Finally, this new doctor diagnosed her with tuberculosis.  Martha spent the next seven years bed ridden.  SEVEN YEARS!  Here I am feeling sorry for myself because it's been nine months.  Not only was she bed ridden, but she spent many of those years away from her loved ones in a sanitarium, and then in TB Boarding Houses.

     As I read these details about Martha's life and saw the similarities to my own health issues, I became curious about what it was like to have TB in the early 20th century.  Even now TB is difficult to treat, requiring months of multiple antibiotics over a long period of time.  When Martha was alive, having active TB was serious to the point of death.     Antibiotics weren't yet available for these patients, and the only "treatment" was a risky surgery that collapsed the lung causing it to 'rest' allowing the lesions to heal.  Martha had this surgery and came out of it sicker then before.  Patients during this era were also isolated from society in sanatoriums which were self-contained communities often considered the waiting rooms for death.  Patients were expected to rest most of the time and only some were allowed to participate in light exercise.  Along with this, they were forbidden to speak to each other about their illness or discuss death, both their own and the death of others.  The purpose was to keep an atmosphere of positive thinking, focused only on getting well.  Patients were only able to get their thoughts on their illness out by journaling.

     Eventually, Martha was well enough to return home, and she was even able to get married!  She had a handful of years where she was healthy enough to keep house and enjoy life as a wife.  To soon, illness became a part of Martha's life again.  This time the doctor encouraged her to move to California.  California was where Martha and her husband went from simple faith in God, to a real understanding of Bible Doctrine.   Martha began to really study the Bible and discovered that her desire to learn about philosophy and sociology could happen through her study of the scriptures.  As time passed, her health once again improved.  She had begun to write poetry inspired by her studies in God's Word.  She later wrote that during this time of health she wasted a lot of time.  She was studying the Bible, but was doing nothing to actually serve God.  Soon, Martha found herself in bed again due to severe pain.  She would spend the next twenty-five years in bed.

     While I was reading this I kept waiting for the happy ending.  When I read that Martha spent the next twenty-five years in bed I felt I had been smacked in the face.  I thought God had led me to this story to show me that I shouldn't be so impatient to get well.  Now, I was faced with the realization that sometimes it isn't in God's will for his children to recover from illness.  I had this as a head knowledge, but I had avoided considering this as a possibility for my own circumstances.   When this knowledge had previously attempted to enter the front of my mind I had pushed it back with excuses.  Reading this truth in this context prevented me from reasoning away the possibility that maybe life won't ever get easier here on this earth.  As soon as I accepted this fact, I then was faced with the decision......will I still trust God?

     Although Martha spent the next twenty-five years in bed, that time was spent serving God.  She had lost all excuses to use the God given talent of taking his word and expressing it clearly through poetry.  Over these years, stuck in her home, she wrote seven books of poetry and many tracts.  She was only able to experience church through her radio.  She was only able to experience fellowship through others coming to visit her.  During this time her husband also became sick and bed ridden.  The two of them were completely dependent on God's provision.  Eventually, she lost her husband to his illness.

     I either trust God or I don't.  It's really very simple.  So, yes, I trust God.  No matter what.  Martha didn't know that her years in bed would prepare her for the work she did during her life time.  Not only that, she didn't know how far reaching the affect of her illness was on the lives of others.  Here I sit, 100 years after she was first diagnosed with TB, finding comfort in her autobiography.  A book, long out of print, found its way into my bedroom and has helped give me perspective considering my own illness.  If God had graced her with a quick recovery, her life would have in no way ever touched mine.  How can I question the Will of God?  I will end this blog with a poem written by Martha.

Pain

Does your bitter load of grief, tears and pain, 
Seem to great for you to bear?                                                            
Don't complain.  you are only being made fit to reign;
Fit to reign, with Christ our Lord.

Surely we are all unfit, all untaught;
And if wise and lively lore, knowing naught,
All the gold of Uphoe could not have bought,
Private lessons from a King.

Precious pain to teach His child, used of God, 
Taught by very God Himself, and we complain.

The Frustration of having an Invisible Illness

   

I Now Get the Frustration that comes with having an Invisible Illness

     In many ways I was fortunate to have been so obviously ill.  The sudden change in my physical appearance from healthy and active to being in a wheelchair with uncontrollable muscle spasms was drastic and scary.  There was no denying that something was very wrong.  Because of the obvious signs of illness I never dealt with the issues many lyme suffers have to deal with.  We will ignore the fact that I only got so bad because of my stubborn refusal to accept I was sick.  In reality, most people apparently have the common sense to demand answers to their health problems way earlier in their symptom progression.
     I have read many accounts and heard many complaints of lyme patients who were frustrated when people said to them, "you look so good!", or "you look so much better".  I honestly couldn't understand why lyme patients couldn't just take those comments and accept the good intentions behind them.  The people saying these things were only trying to be encouraging, why were lyme patients being so negative about it?

     It wasn't until this summer, now that I am eight months into treatment, that I began to understand.  First, if you have said this to me, no worries! I am happy to be out and I am happy I don't look sick anymore.  Still, I do now understand the frustration lyme patients feel when hearing these comments.  The most common comment I hear is, "you are looking so good, it's so nice to see you out!".  I always responded by saying I was happy to be seen!  After months of being stuck at home it was so nice to not only go out, but to have the energy to do my hair and makeup first and then once out be able to have conversations with people. So even then these comments didn't bother me and I still couldn't understand why other lyme sufferers were so bothered by them.

     Now, a few months later, I completely get it.  I am at a new point in my journey to recovery.  It is no longer an endless stretch of bad days where the occasional good day was a day where I could do a load of laundry and read a few chapters in a book.  I have days that are so good I can go for a short walk, help with more rigorous housework, do some bookkeeping, or even teach a taekwondo class with the help of my trainee instructors.  I don't do all those things in one day, but on my good days I usually can have an hour or two of activity, rest a few hours, and then have another stretch where I can get more done.  Right now I seem to have a couple of good days followed by a couple of bad days.  This also doesn't account for the days that are REALLY bad, the really bad days are the days I'm taking medicine that causes me to herx. Putting it all together, I still have many more bad days then good days.

     So, when I am out and about on a good day, and hear people say how it's so nice to see me looking like I am feeling better, I wonder if they realized how sick I still am.  It's true, I am feeling better!  I am happy that overall my body is working more normally.  I no longer use a wheelchair or my handicap parking tag.  I can talk to others without my arms having a mind of their own, flaring around as I speak.  I can pretty consistently walk without the weird neurological gait I use to have.  I can even do short shopping trips without using the store scooter!  So yes, I'm feeling better.

     It's also true that my bad days are really difficult to get through.  The fatigue is overwhelming, making getting out of bed almost impossible.  The pain is unrelenting so even if I do get out of bed I can't do much.  The vertigo makes me feel like my house is a boat and I often have to take Dramamine to just be able to walk around.  The optic pain makes reading and watching tv impossible so I am not only stuck in bed, but I am bored out of my mind.  I usually am able to have brief moments where I connect to the world through my phone, beyond that, I feel pretty invisible on my bad days.

     The problem lyme sufferers have is that nobody sees us on our bad days.  We only leave the house on the days our bodies are functioning and our pain is tolerable.  When we hear how much better we look it is easy to feel invalidated.  I didn't feel this way at first, but now that I have been able to leave the house more consistently I have a hard time not feeling this way.

     As a lyme patient I am already facing many obstacles. The general medical community denies the existences of my disease resulting in even many of my peers denying my disease as well.  There are few local doctors who treat lyme, and none that I have found who treat chronic lyme as aggressively as it needs to be treated.  So along with being sick,  I have to travel out of state to get good medical help.  Insurance doesn't cover much of our treatment protocol or the lyme doctors who treat us which causes financial stress.  To add insult to injury, I am to sick to work leaving me dependent on others.  Oh, and don't forget this isn't just me, my husband and two of my children are also going through this at the same time.  So I am trying to be a good wife and mother and do what little I can to help them as they deal with their own illness and treatment.  All of these problems are the problems of every lyme patient.  To make matters worse, we are in treatment for not months, but for years.  I know I would be tired of hearing someone go on about their health for years, so I don't really enjoying constantly bringing attention to my own health.  I do so for one reason, to bring attention to this national health crisis.  A health crisis that could easily be YOUR crisis.

     When you tell a lyme patient we are looking better, we worry that you think the struggles of the illness are behind us and we are close to being recovered.  This is the furthest from the truth.  Let me use the past two days as an example.  Yesterday I felt like going to church.  While at church I continued to feel ok.  Unfortunately, Jenna, who is at the beginning stages of treatment, was feeling sick and we had to leave early.  After church I took a two hour nap and when I woke up I felt like getting out of the house and doing something.  We will ignore the fact that I had spent the previous two days in bed.  We will also ignore the lack of house work that had been done over the past few days. It is summer, and I wanted to use my healthy day to enjoy the outdoors!  I was hoping the kids would want to join us on a summer excursion.  Chelsea was struggling with pain and fatigue and wanted to stay in bed.  Jenna wanted to come, but her vertigo was making her nauseous.  Because I knew how bad she wanted to get out and do something, Scott and I went and bought some more Dramamine (we were out of course, three of us needing it so often tends to cause us to run out of it easily).  Thankfully, the Dramamine did the trick and we were able to head to Seawall with Jenna and her boyfriend.  It was a short trip, and wore us all out.  Luckily, we had some pizza kits at home making supper easy to make.  It was a early night in bed for everyone.

     WooHoo! I had a good day, sometimes when I have a couple of good days in a row I trick myself into thinking it is going to be clear sailing from here on out.  Wrong!  Seriously, if I can be that delusional when I am living it, how can I  not expect others to think the same way?

     Then today, talk about a buzz kill.  Not only has today been horrible, it has been one of the worse days I've had in months. I wasn't surprised, just disappointed.  I wake up every day hoping for a good day.  In reality, I am having more bad days then anything.  I know it's part of the course, but it still is frustrating.  If I am tired of being sick I can't imagine how tired everyone else is of hearing about me being sick.  The downward turn isn't because treatment isn't working.  It's because treatment has worked so well on lyme and babesia we are now targeting bartenella more seriously.  This is how this disease works.  One step forward, four steps back.  Most people only see me on the one day I am well.  So, like most people in treatment for lyme, we feel like the four days we aren't seen are being ignored.  I know this isn't the case, at least purposefully, but it still makes us feel invisible.

     I originally logged on to update you on the whole family.  There is a lot to update.  I will do that in my next entry.  I just really felt like I need to share this with you, mostly because I was a tad judgmental when other lyme patients expressed this frustration.  This is my way of saying that I get it, and I'm sorry for passing judgement.  To my friends who are reading this, don't stop telling me you are glad to see me or glad I am improving, but along with those comments, ask how I am doing overall.  That way I don't have to feel like I'm lying when I smile and nod in agreement, or feel like a looser if I correct you in how I'm really feeling.  Actually, it is good for me to be reminded how far I have come.  I do tend to get lost in where I am at right now.  Whenever someone tells me how good I am looking, I use that comment to remind me of where I was at only a few months ago.  I use my good days as bench markers to help me stay focused on continued improvement instead of feeling lost in all that is difficult about this disease.

Shopping for a Doctor

Patients are consumers.  We have the ability and obligation to be choosy when picking which doctors to give our money to.  Being consumers, we also have the ability to control, in part, what the medical community provides for health care.

Before I go on, let me just say that I DO understand our options are limited by the insurance industry.  Unless you have the financial ability to pay for private insurance or pay for appointments yourself, it is more difficult to feel as though you can be selective in who you choose to provide your medical care.  Don't fret! There ARE plenty of wonderful doctors who are worthy of your money (or your insurance companies money), you just have to look harder.

Sadly, though, many of our best doctors are beginning to opt out of the insurance companies steel grip over the health care system and you do have to pay out of pocket, or best case scenario, a higher copay to receive their services.

This blog isn't about the insurance industry, instead it's about choosing who is your partner when making decisions about your health.

When it comes to your health, YOU are the final say in your medical decisions.  That's right, your doctor is there to provide options, make suggestions, and refer you to specialists.  In the end, the decision is YOURS and yours alone.

Nobody knows your body better then YOU!

Before I go further, let me give you some inside information.

A friend of mine is a highly credentialed medical specialist in a major metropolitan hospital.    He/She told me once that in medical school doctors are trained to do two things: prescribe medicine and do surgeries.   When they leave medical school they have exorbitant bills to pay off.  In order to pay off their student debt they do what makes them the most money, prescribing pills and doing surgeries. I am just repeating information given to me by someone disillusioned by his/her own field.  I have no first hand knowledge of this.  I do have another doctor who did confirm this to be true by telling me that there is little he/she could do as far as investigative medicine.  He/She said that she is able to prescribe meds to help relieve symptoms but that is about all.

Both of the above, unnamed doctors had one more piece of insight.  Don't settle for being given medication to treat symptoms.  To truly get well you need to find the root cause of those symptoms. Many of the diagnosis's out there today are simply a name for a list of symptoms that have no explained cause.    Patients sit at home waiting for research to happen to find out what is causing the symptoms.  News Flash!  Research is being done, but not on the cause of the symptoms as much as on what medicines will HELP RELIEVE the symptoms.  Our pharmaceutical industry has a heavy hand in politics and research.  People who are cured DON'T BUY MEDICINE.


Ok, I'm getting of topic.  Before you write me of as some loony, let's get back to discussing how to be a consumer in the health care system.

First, many doctor's hate when patients do their own research.  Doctor Google is creating many hypochondriacs apparently.  Let me ask you this, when you buy a car, how much research do you do?  Is it better to go into the salesmen armed with information or better just to trust the salesmen blindly and accept their price and their information on the vehicle?  If you do research on a major purchase like a car, isn't it even more important to do research on your own health?

Doctor's don't know it all.  It's impossible for them to!  If your doctor thinks they have the answer to everything, or if they think that if they can't find an answer then there mustn't be one, it's time to find a new doctor.

So, when you are doing research, be wise in evaluating what you read.  First, the most important thing to know is where the information you are reading is coming from.   An easy beginner tip is to look at the domain of the site you are getting your information from.  If it is .edu, .gov, or .org then you are on the right track.  Where this blog isn't about researching I would suggest researching how to research on the web!

When you go to an appointment, don't assume you have all the answers either.  You are hiring your doctor as a professional because they have the medical degree and experience, not you!  What you should expect is that your doctor be willing to listen to your questions and concerns and if they don't know the answer, or don't agree with your information that they be willing to say so and also be willing to go research for themselves and get back to you.  Even more importantly, your doctor should be willing to admit if they are wrong.  Yes, there are doctors who do this! Crazy, I know!

Also, your doctor should be not only willing, but should encourage you to shop around!  If they are good at what they do then they will be confident in you to make the right choice for YOU!  In the martial arts school we own I encourage seekers to look at all their options for martial arts in the area.  I am confident we provide an excellent program and if someone chooses to go somewhere else then they wouldn't fit into our program anyway and they are better of staying at the program of their choosing.  The medical profession is no different.

If your doctor bashes on other medical professionals of any capacity, no matter if their degree or specialty is the same or different, it's time to get a new doctor.  Now.  Don't waste your time any further where you are at.

If you are seeing another type of medical professional such as a naturopath or chiropractor, your doctor should be willing to work collaboratively with them.  If you feel resistance with no valid reason, move on to the next doctor.

Bottom line, YOU not THEM are in the drivers seat.  You are hiring them for their expertise, but in the end all decisions for your treatment are yours.  The doctor you choose should understand this.

When we complain what is wrong with the medical community don't forget that we have choices.  If we take our dollars to the right doctors, then the rest of the medical practitioners will have to change course if they plan on staying in business.



If you are reading this and are truly limited in your options then there is one more thing to do.  Know your body, know the most update information that is available, and keep bringing it to your doctor.  If enough patients do this then eventually even your doctor will start to listen.  Please, before you follow this advice, be well informed with accurate information, be calm and professional in your conversation, and be polite and respectful to your provider because they did work hard to get through medical school and they do deserve the respect that is due for that accomplishment.  If you are negative, or come across as attacking them or their career, they will naturally become defensive and not be open to the information you have.  If you want to be taken seriously, then you do have to take them seriously!

Finding Ways to Feel Productive when you are Chronically Ill

There is nothing more frustrating to me then being limited in my options.  I functioned with chronic illness for almost 30 years, and never allowed pain and fatigue to stop me from doing the things I set my mind to doing.
I attended college, I gained experience in my professional field of choice, I trained in Tae Kwon Do and excelled in all areas of this sport.  I homeschooled, and then when my children returned to public school I remained active in their lives both in and out of the classroom.

Words like industrious, creative, enterprising, entrepreneur, are words that describe me.

My brain is always churning out ideas.  I spend a lot of time and effort organizing ideas to focus on, ideas to put on hold, and ideas that may not be worth my time.  I literally have a complex filing system in my head that compartmentalizes all of my thought processes.

Along with all of this, I consider myself a hard worker.  I do believe God has been teaching me to not depend on my own abilities so much as I go through this illness, but I also am feeling God's gentle nudging to reexamine some ideas I have filed into the "not worth my time" section of my brain.

I have been off the radar for a month or so because we had to move both our home and our business.  Let me tell you, if it weren't for the help of friends, family, and students, we would have been really struggling.  Even with the help, the move has hurt our finances to the point of it becoming a critical situation. That's reality when you have a houseful of people who have high medical bills.  Historically, when faced with this dilemma, I could take on a second job, or get extra hours at my full time job.  Scott, as well, has many places that he can seek out work from.  Unfortunately, these options are viable for either of us at the moment.

My mind quickly began to think of ideas of how to earn money.  Over the winter, when in these situations, I would purposely stop trying to figure it out, and let God solve our problems for us.  Doing nothing but praying was a major step of faith, a step that paid off every time.

This time is different.  When I tried not to worry, and only pray, God gently nudged me to look at my options.  The peace I had been experiencing all winter whenever I let go of a problem, hasn't happened this time.  Carefully, and prayerfully, I have been allowing myself to evaluate what I could do to help our financial situation.

God knows my motivator.  It's to be financially stable.  I'm not saying I want lots of money for lots of things, but when I am feeling the financial rug being pulled out from under me I suddenly find myself hugging God a bit closer.

Let me put out a disclaimer: I am not saying God was nudging me to earn more money.  What I am trying to express is that God used finances as a way to pay attention to other things I had been letting slide.

For years I have said I wanted to write a book.  I've also had numerous people at various times, tell me I should do more with writing.  I have started multiple book projects, but a wall would always go up in my head and I wouldn't follow through with anything.

I usually saw the wall as God's way of telling me to wait.  I don't know if that was truly the case, or just my way of getting out of something that made me feel insecure.  Writing is a personal endeavor.  You are taking your unique thoughts and ideas, and putting them out there for all the world to judge.  What if the world judged your writing poorly?  It's not like writing a blog, at least not for me.  Blogs don't take long to write so the personal investment is minimal.  If people don's read it or don't like it, you haven't lost much.  Writing a book is a long, hard process.  It's a full time job!  A person who endeavors to write a book has to be willing to invest a large amount of time and energy into something that may never be given much attention to by the general public.  Your book is your baby, if you aren't careful, you could feel the rejection of your hard work to be a rejection of you as an individual.  It is obvious why I have been so hesitant to pursue this project.

Last year I made a commitment to myself to take one of my book ideas and write the first chapter.  I spent months working on this chapter both researching and soul searching.  When my illness became the main focus of my life, I put the book on the back burner and focused on other things.  Over the winter I have had a few people suggest I use my love of writing as a way to generate an income.  I pushed the comments aside and continued to only blog when I felt inspired to do so.

Recently, I pulled up the file that held the chapter I had written last year.  As I reread it I realized that it was something worth sharing.  I decided to write a second chapter and a few weeks ago I finished chapter two. I wasn't in a huge hurry to start chapter three, I was viewing this as something to do slowly, over time.  Apparently, God has better plans.  He implanted on my heart not only the desire, but the burning need to finish this book.

Before I started the next chapter, I decided the best way to hold my feet to the fire was to put my plans out to the public.  If I said publicly I was going to do something, then I would have to do it!  God made sure I committed fully to this by providing me the 'motivation' I previously shared that gets me running.  A financial situation gave me the drive to get online and seriously figure out my best publishing options.  I then have taken it even further and published my first book, using some blogs I had previously written as a way to work out the kinks that come with self-publishing.  I am so pleased with the product I decided to actively market it.  You can check out my first publication in print form at https://www.createspace.com/4845840 .  It is in digital format at http://www.amazon.com/dp/B00KVEKGP4

Do I think I am going to make it big in the writing world?  Statistics say probably not.  That's not why I'm writing.  Yes, it was finances that pushed me over the line to become willing to put myself out there, but now that I have taken the plunge I see this in a whole new way.

I love writing!  I simply love it.  What has been stopping me is my own insecurities.  Putting this first book out to the public knocked down my wall of fear.  I can now see what was on the other side of that wall.  A life time of putting my thoughts into print and sharing my projects with whoever God sends my way.  It is like I was hiding in a shadow, not realizing I was missing out on a beautiful field in the sunshine.  I don't care if I don't make a penny, I feel free to express myself through the written word and my mind is bubbling with ideas.

Don't get me wrong, if I could make an income that would help pay for our families medical expenses I would accept that gift from God with gratitude.  I would love to be able to simply pay for the best treatment, and then once I was well help others who are sick get treatment.  For now, I am simply happy to have found a way to feel productive.  I need to feel as though I am contributing to society in some way.  Sitting on my couch watching Netflix has gotten very old.  I am well enough that I can spend small blocks of time during the day doing things that help me feel like I'm not sick.  I don't want the self identity of being disabled.  I need to feel as though I am using my abilities to bring something positive to my community.  Writing is doing that for me.

Speech for the World Wide Lyme Protest and Rally held in Augusta Maine

This weekend is the 2nd Annual World Wide Lyme Protest and Rally.  You can learn more about this event at http://worldwidelymediseaseprotest.blogspot.com/ .  We had a couple of events here in Maine.  One of those events was a protest in Augusta at the State House.  I wanted to post the speech I did for you to read and share.  It does contain pieces from other blogs I have written, it also has new information.  My purpose is to rally our community to stand up and demand better attention be paid to the issues in regards to Lyme Disease.

First, you need to know that I’m really two people.  

The first person I am is a woman who has had chronic health issues since 1985.  In 1993 I became very sick.  I spent the next twenty years visiting numerous doctor’s, having numerous tests run, and being given numerous diagnosis’s.

The second person I am is the person I want to be known for.  I am a mother, and wife, who has done the best I could to remain active in the lives of my family.  I am a person who has dedicated my life to helping others.  I have spent the past 18 years working with children and families in both educational and therapeutic environments.   I have worked for OHI, RSU 24, Families United, and most recently I was employed at Kidspeace New England.

What I’m most proud of is becoming a professional martial artist.  Despite illness, fatigue and pain, I have earned my third degree black belt, become a state champion, and along with my husband opened a martial arts school.  The privilege of teaching children and adults leadership life skills along with teaching martial arts is the most fulfilling experience I could ask for.  In teaching leadership skills I have taught my students the importance of community service.  In the past two years our students have raised and donated $2000 to local nonprofit organizations.

Unfortunately, this spring, the illness I have been burdened with began overtaking my life in a way that was  beyond my control.  After years of managing and masking my symptoms I found myself unable to keep the “sick me” at bay.  It started to go beyond my control when I was working out with my instructor in Massachusetts.  I was training to ready myself to test for fourth degree black belt.  During a drill I completely lost the use of my arms.  This lasted for a few minutes and needless to say, it scared me.

My symptoms progressed as I sought answers from the local medical community.  I attempted to continue working as I slowly slipped downward.  Finally, one day at work, my legs stopped working.  I finally gave in and accepted I couldn’t force my body to keep going.

I had a friend who spent the summer quietly prompting me to look further into lyme disease as a possible cause for my symptoms.  At first I ignored her because I had been tested for lyme three times throughout my adult life.  All tests came back negative.  I didn’t know that the test I was given is highly inaccurate.  It wasn’t until I was sent home after a hospitalization, being told there wasn’t anything that they could do, that I started listening to my friend.  I still couldn’t walk.  I wasn’t given any referrals or advice as to what I should do next.  I was angry, frustrated, and scared.  It was then that I began to research chronic lyme.  

My aunt referred me to a lyme literate doctor in Washington DC.  The week after I was suppose to be in Orlando testing for my fourth degree black belt, I found myself in a wheel chair, in our nations’ capital being given the diagnosis of late stage neurological lyme disease.  It took 20 years for me to finally be given the correct diagnosis.

I thought the hardest part of my battle would be finding the diagnosis.  I made the assumption that the medical community would fight with me for answers.  Never, in a million years, did I think they would give up and send me home with not diagnosis, no plan, leaving me with no hope.  

There is something terribly wrong with the fact it is friends and family who helped me find the diagnosis.  I bet many of us have the same experience.  It should be the medical community recognizing, what I now know to be quite obvious, the symptoms for lyme.  Now that I understand lyme, I don’t think it is difficult at all to diagnosis!  I am not trained in the medical profession but I am able to learn and observe.  What I see is a state full of people who are chronically ill for no apparent reason.  I know dozens of people who suffered just as I have, some of those people have found a lyme literate doctor and been diagnosed with confirmation blood work from Igenex.  Others, struggle to accept the possibility that what their doctor is telling them is wrong.

Before my lyme diagnosis I knew nothing about the politics associated with this disease.  I took a crash course in all things lyme and became my own best advocate.  I’m so thankful for the people who bravely dared to tell me my doctors could be wrong.  I pay that forward by sharing information on chronic lyme to anyone I come across who have unexplained chronic illness.  

I have to be honest:

When I began treatment and became more active in the lyme community.  I was surprised by two things.  First, I was surprised to find out the mass number of us in this community that is basically hidden from the world.  Second, I was surprised at the overwhelming silence due to people being unwilling, for whatever reason, to speak out. I am surprised that in this day in age a disease could be so polarizing and controversial.     If my friend hadn’t spoken up, and continued speaking even when I didn’t take her seriously, I would be home sick and scared.  

I was so disappointed to discover that I had lost my whole life to a disease that the government denies exists!

I was shocked that there was medicine available to help me, but I couldn’t access that medicine due to cost and my insurances refusal to pay.

This isn’t just unfair, this is criminal!

The CDC failed me with their flawed diagnostic criteria that allowed me to go undiagnosed for twenty years.

The IDSA has failed me by not updating their treatment guidelines to reflect the most recent research.  

The medical community failed me by not being better educated on this debilitating disease.

Our community is failing us if they aren’t as outraged by this injustice as we are!

.

I carry many titles, wife mother, daughter, sister, aunt martial artist, instructor, educator, friend, Christian.  I am adding a new title to my list: ACTIVIST

I am disgusted with the ignorance over a disease that can be so damaging!  I’m angered that so little attention is being paid to an epidemic that borderlines being a pandemic!  I’m shocked that so many are allowed to suffer silently.  I’m saddened that those who are sick are invalidated, being given labels like: hypochondriac, mental, crazy, lazy, attention seeker….

It isn’t ok that those who are sick with Lyme often hide their diagnosis from friends and family due to the negative stigma associated with it.

It isn’t ok that those who DO share it with their family and friends find themselves rejected, judged, and ignored.  

It isn’t ok that thousands of the sickest among us are denied treatment because insurance companies won’t pay for it and they can’t afford it.

It isn’t ok that those who are sick find themselves in financial ruin.

It isn’t ok that so many who are sick find themselves alone with their illness.

It isn’t ok that much of this could be prevented with better diagnostic tools and early intervention!

The IDSA guidelines haven’t been changed since 2006.  The guidelines don’t reflect the most recent research showing lyme CAN persist and cause a chronic condition.  Because of these outdated guidelines the medicine that works best for me isn’t covered by my insurance.  The medicine that works best for my husband the insurance only allows for a limited quantity.  

By not allowing me the best treatment, my doctors recommended treatment, the treatment that has given me back my ability to walk,  I’m not going to be returning back to work as soon as I hoped.  By denying my treatment the government is forcing me out of the workplace and home on government assistance.

The CDC stubbornly sticks to their inaccurate 2 tier diagnostic criteria.  It’s due to this criteria that most of us have lyme in a chronic form!

Last year the state of Maine passed a law which included a mandate that lyme test results need to state that a negative test doesn’t mean you don’t have lyme.  It’s a huge first step, but it’s NOT ENOUGH!  We are still far behind other states in our part of the country.  Doctor’s need to be educated on how to diagnosis lyme clinically.  If I had known 20 years ago when I first suspected I had lyme, not only would I probably not be sick now, but my children wouldn’t be sick either!

The CDC estimates 300,000 new lyme cases every year! Where is the public outcry?  Where is the demand for further research?! 

There are many reasons for us lymies to be ACTING UP! In fact, if you are listening to this and don’t have lyme, you also should be angry!  What if you get infected in the future?  It is very probable!  Our situation can just as easily be your situation!  At the very least, as a tax payer you should be mad.  Think of all the people who are disabled who WANT to work and be an active part of their community!  

Here is what is most frustrating: those of us who want change bad enough to become activists are also to sick to be very active!  We are able to do very little in standing up for ourselves, we are the most motivated, but can’t do a lot!  

This isn’t the first time our governance ignored a growing health crisis.  Let’s take a second, and compare the lyme disease epidemic to the aid’s epidemic in the 80’s.

In the two year period of 1986-1987 there were between 80-90,0000 new cases of HIV.  That is four times the number of new lyme patients every year!  It was in 1987 when the AIDS coalition to Unleash Power, better known as “ACT UP” was formed.  

There motto was silence = Death

The purpose of this group was to bring about legislation, medical research, and treatment and policies to ultimately bring an end to the disease…….sound familiar?

Why were these changes needed?

The cost of AZT, the best medication at the time was higher then most aids patients could afford

The narrow definition of AIDS from the CDC caused numerous women to be misdiagnosed.  

There was a lack of effective and accurate media coverage

Does this sound familiar?

Do you think it was hard for these infected individuals to come forward and speak out?

Do you think they worried about criticism, discrimination, and loss of relationships?  Of course they feared these things.  

Despite their fears, they knew their lives, and the lives of future generations were at risk.  They knew they had a moral obligation to speak out!

Here are a few things they did:

Demonstrated on Wall street and Broadway to demand greater access to experimental AIDS drugs.

The day before the demonstration, the organizer wrote and op/ed piece explaining the issues ACT UP were concerned about.

Act Up members chained themselves to the VIP balcony at the New York Stock Exchange to protest the high cost of the only approved Aids Medication.

They shut down the FDA for a day, it was the largest protest since the Vietnam war.

On April 15th, they protested at the NY post office to catch the attention of all the last minute tax fliers.

Women targeted the CDC for it’s narrow definition of AIDS/HIV

Day of Desperation: 3 ACT UP members entered the CBS Evening News yelling, “Aids in news, Fight Aids not Arabs” (I love this one, if you can’t get the media to pay attention to you…..well you just bring your issue straight to them!)

Are these extreme measures? YES!  But it was an extreme situation!  Guess What?  It worked!  Aids now gets billions of dollars ever year for research, diagnosis and prevention.  The landscape of the AIDS epidemic has changed dramatically!

WE could now easily exchange the word AIDS for LYME.  It is the exact same problem with a different name.  Even more scary are the recent studies suggesting that LYME could be and STD.  It is the cousin to syphilis.  It is a blood born pathogen.  Lyme can be passed from mother to fetus during pregnancy and from mother to baby during breast feeding.  

I am upset I have been sick for so long and have judged myself for being lazy or a wimp.  I’m upset that the doctors who I went to for help were ignorant concerning all the obvious symptoms I had for lyme.  I’m upset that finding a lyme literate doctor is so difficult.  I’m upset that I gave lyme to my children.  I’m upset that I have a medicine that was working for me but it’s to expensive! 

I’m ready to act up!

I know we are sick.

I know this battle is physically, emotionally, and financially draining.  I also know that nothing will change until our voice is so loud that the CDC and IDSA have not choice but to listen.

Gregg Bordowitz, an early member of ACT UP, said

“  You have to go out there and convince people of the validity of your ideas.  You have to go out there and convince people”.

We need to be doing all we can to convince our community this is an issue that needs to take priority.  We need to repeat ourselves again and again.

This is an election year.  We need to demand our politicians to publicly state where they stand in the great lyme debate.  We need to be writing letters, making phone calls, and reaching out to the media on a regular basis.  We need to keep talking until the right people listen.  It took ten years for ACT UP to see the changes they were seeking.  We need to continue on this road until the day where chronic lyme is treated as seriously as every other major illness.  If we don’t, how sick will our population be in twenty years?

Why Me? Why Not Me?

I am coming out of the Easter Season with a clearer understanding of a spiritual issue I have been struggling with.  Although I accept the trials God puts in front of me, I do find myself having an expectation of there being a light at the end of the tunnel.  That light symbolizes to me a relief from the difficulties I have been living with.  Not only do I wish for a relief from my struggles, but I would love to find a reward waiting for me once I have finished walking through this dark valley.  I know, the reward is waiting for me in Heaven, but that isn't the reward I am talking about.

For me, I find myself coping with my problems by hoping for a better future.  I've gotten so I can trust God with the things that cause me stress, I can accept the problems I have to deal with, I know there is a greater reason for my struggles.  What I'm not good at is having acceptance of dealing with any struggle that will affect me for the length of my life.  I always view my problems as a temporary issue.  I don't allow myself to entertain the thought that I will be suffering from severe trials ten years from now.

The fact is, God hasn't promised us a life without struggles.  Honestly, when I allow myself a WORLD VIEW, I realized my problems are trivial compared to the millions of individuals living in 3rd world countries. Any frustration I feel over the amount of difficulties I have had to endure is selfish when I look at my difficulties in comparison to others.

I have often felt I had PTSD when it came to trials.  I have had my fair share.  I also have an understanding and commitment that my life isn't mine, but it's Gods.    As weary as I am from my life, I wouldn't trade it because God has designed me for a specific purpose and I do intend to live out my purpose, even if its hard.



So, the struggle I have had is knowing how to pray.  I know I am suppose to pray with faith God can answer.  I know I am suppose to lay my burdens at his feet and He will handle them.  I know these things, but I also know that God may not be ready to rescue me from my struggles.  I think I'm worried that if I prayed for God to "fix things", I would be angry if He didn't answer as I hoped, or worried that my attitude would change and my willingness to live for God, even when its hard, would leave me.

The answer is really very simple.  Today I was reading about when Jesus was betrayed.  His disciples pulled out swords and He chastised them.  He remind them He could call to God and have a legion of angels be sent.  He didn't do this, because what was to come next was part of God's perfect plan.  It somehow made me feel better to know that even Jesus had circumstances that He needed help with, and even though we know God was able to send help, it wasn't in God's plan to do so.  Jesus wasn't in this circumstance because of a bad decision, He had done nothing wrong to deserve it.  Jesus had also prayed and asked for a way out.  His asking didn't show a lack of willingness to go through a struggle, because in the end, he resigned His will to God's will.  I guess this gave me permission to ask for a way out of my trial, but also know that if God isn't changing my situation, it isn't because I have done something wrong, or because there is some puzzle I have to figure out first.

And really, I can say, "why me?" .  The truth is, "Why not me?".