A Message for those of you with A Message

Holy Facebook UpRoar

People are up in arms about the National Anthem, Proper Flag Etiquette, and Professional Football Players.

I'm sitting here hitting my head against the wall, AGAIN because us Americans sure do like a ruckus. We get upset but we don't seem to know how to get others to HEAR our complaint and respond accordingly.  We are really good at making noise, but we aren't very good at being heard.  Point in case, today's social media uproar.  It appears that NOBODY seems to remember WHY football players took a knee during the anthem to begin with.

What I'm hearing right now is that the collective NFL is protesting our country, our flag, or president, our anthem....but that wasn't the original point being made.  No surprise there is confusion, when the message isn't clear the voice may be heard, but it won't be understood.

This isn't a blog about my opinion on flag etiquette.  It isn't about showing respect.  It isn't even about the merits of any particular complaint.  What it's about is HOW to protest in a way that MAKES SENSE.

I had to google what the original protest was about. FYI, it was concerning police brutality.  Seems like I'm not the only one who forgot.

Let me be clear.  I am all for a good protest.  I've even organized a few.  What I'm NOT for is people raising kane with no clear agenda, a fuzzy message to an inappropriate audience.

So, here is my personal "cheat sheet" on how to protest in a way that is effective.

WHAT DO YOU WANT?
Specifically, point by point, what is it you want to happen? "Ending police brutality" isn't clear enough. How about, a specific demand of increased training in police departments centering on the issue you feel officers need more education on. When specific, you can know when your demand has been met and when you can END the protest.

WHO IS YOUR AUDIENCE
I get gathering media attention, but lets be real, blocking roads, impeding businesses ability to operate when those roads or businesses have nothing to do with what you are protesting is only going to make people mad and NOT WANT TO LISTEN TO YOU.  The Lyme Community has a yearly protest at IDSA headquarters in Washington DC.  The audience is the IDSA.  That's where the protest is and that is appropriate.  If you want your audience to include the population at large, making the general population mad at you isn't the way to get your message heard by them!

DOES YOUR PROTEST CONNECT TO YOUR MESSAGE?
Here is the bottom line.  If I have to google what you are protesting, then maybe your form of protest isn't working.  Kneeling during the national anthem does not connect clearly enough to ending police brutality.  Yes, maybe these football players are taking advantage of their national audience, but getting attention isn't enough to create change.  And you know what? It's kinda lazy.  How much time and effort are these players putting into their cause with actually "boots on the ground?" How much money are they donating to help improve the police force?  I don't know, I'm just asking the question. That leads me to my last point...

ARE YOU PUTTING ACTION TO YOUR WORDS?
It's simple, you had better be putting as much effort personally into a cause as you put time into making noise.

Hope Comes From Unexpected Sources

I remember when I was at my sickest, lowest point, I took a break from the online "Lyme World".  I did this because reading the daily posts of those who were sick and not finding healing took away my hope.  The posts from people who had reclaimed their lives were few and far between, making it seem as though getting well was more of a dream then a reality.  I was stubborn enough to refuse to let hope be robbed from me, so as hard as it was, I pulled back and turned my attention towards anything that made me feel as though I was "living" my life, whatever the definition of "living" was for me at any given moment.  My intention was to one day return to the "Lyme World" when I had regained my health and give the hope I found to others.  I didn't want to disappear forever.

Four years after starting treatment I now find myself able to say truthfully, that, "I'm better"!  I don't use the word remission yet, but I think I'm very close!  I have been attempting to fulfill that promise to myself to return to being a part of the Lyme Community, but it's hard.  I now understand why people pull away when they are healthy, giving hope to others is much harder then finding hope for yourself.  I see the posts in the various groups, the same questions, the same sad stories, the same confusion and desperation.  It feels redundant, giving the same information to people over and over again and having them over and over again hit the same road blocks.  Even more difficult is pouring so much time and energy into someone and then have them give up the lyme journey and resort to whatever treatment or help their general practitioner can give them.  That isn't a criticism, I get it! Still, it's frustrating that the lyme journey is so impossible to navigate, causing so many people to continue in their suffering.  It's the suffering of others that makes returning to this world so difficult.  

Still, here I am, writing this blog.  I want to share hope.  

Four years ago, I stopped working when I lost the use of my legs.  My downhill spiral was swift and severe.  At my worst my husband was having to feed me.  Now, as my Facebook memories remind me of my hospitalizations, lack of answers, and desperate search for help, I'm ecstatic to be at my old job again!  The one question I'm now getting is, "What did you do to get better?"  Isn't that the question everyone with a chronic illness wants an answer to?  I wish I could give a simple answer, do this and do that and then everything will be ok.  Unfortunately, there is no simple answer to this disease.  I'm sure that in future blogs, I will discuss the specifics of my treatment, but what I did to get well may not be what works for you.  This disease is so unique to the individual.  There are no cut and dry answers.  

The one thing I can promise you is this: There is no HEALING without HOPE.

Let me tell you how I hung on to hope.  

ACCEPTANCE
In darkness we see light, In reflection we find acceptance, In willingness we see hope ~unknown

Acceptance is something I had to find again and again in different ways. 

In the beginning I had to accept that I was sick and stop fighting with my body to function.  I pushed myself to the point of being unable to use my body at all.  I spent years refusing to acknowledge the seriousness of my health. For me, accepting that I was sick meant I had no other choice but to find answers.  The search for answers had been so hard the times I did attempt to find them that I would always give up and just live with my symptoms.  It took accepting that I was truly, seriously, sick, for me to have the determination I needed to find answers.  

After accepting that I was sick, I quickly realized I had to accept help.  Being sick my whole life had made me feel weak.  I was constantly trying to prove I was strong and capable, and I did this by being self-sufficient.  I didn't want to accept help from anyone, I was constantly trying to prove that I could do things myself.  It was my way of hiding my perceived weakness; my illness was my deep dark secret.  I couldn't hide all of my symptoms, but I hid as much as I could.  Accepting help was shining a light into my darkest corners making me feel exposed and fragile. It wasn't until my husband reminded me that HE needed help that I was willing to let go of my stubbornness.  I did it because of my love for him and the only means I had to help him was to accept the help of others.  

As determined as I was to get well, I still had to accept where I was at.  This was different then how I lived when ignoring my symptoms.  Previously, I was in denial there was something wrong, causing me to not look for answers.  Now, I was actively doing all I could to get better, but I also was purposeful in being at peace with my circumstances.  I wasn't going to let this disease rob me of my joy.  I searched out inspiration from the stories of others who had lived lives of purpose despite serious afflictions.  I maintained hope in that no matter how disabled I was, my life could still have meaning.

FAITH
Charity can be the outward expression of faith and hope. ~ Wirthlin

There is no way I could have maintained hope without my faith. I don't know how people navigate difficult times without faith.  I'm so thankful for having a relationship with my Savior since a very young age.  My faith has grown over the years as Christ has brought me through difficult times and repeatedly demonstrated His love for me.  I was very prepared for the challenges lyme disease would bring.

I believe the more faith you have, the more God will work in your life.  I also understand that faith needs to be demonstrated through actions.  It's like the trust fall, when you cross your arms and fall backwards trusting your partner will catch you.  That is what faith is, taking a step, and trusting God to be there.  From the beginning, the scariest part of this disease was finances.  Not only were the costs of treatment astronomical, but my disability insurance was half of my regular pay.  On top of all of this, it didn't take long for us to realize that I wasn't the only one in our family with lyme disease, both my husband and my daughters were also sick.  We did not have the financial means to treat this disease, but we had faith.  We knew that we needed to demonstrate that faith actively and did so in two ways.  The first was to actively seek treatment and trust the money would be there to pay for it. The second was to commit to paying our tithe to our church every month, no matter what.

My faith teaches me that everything I have, including my very breath, belongs to God.  It is fundamental to my faith that our finances are from God and we are merely His stewards.  I demonstrate this belief by giving back 10%  of my finances to the church. I haven't historically been consistent with this.  It was something I did sometimes and then sometimes got out of the habit.  Now, facing this financial crisis, my complete dependence on God was undeniable.  I had a choice, and for me it was an easy one to make because God had demonstrated his faithfulness to me so many times already.  I could have easily justified not tithing because of my great need for medical treatment, but if I did that I would be depending on ME and not depending on God.  So, my husband and I made a promise to always tithe first, and I'm so glad we did because it allowed us to see God work in ways we would have never experienced otherwise.  Someday I will have to write a blog outlining these miracles, there are so many.  For now I just want to say that our financial situation has never been better in our almost twenty year marriage.   It doesn't make logical sense, especially considering I lost my disability insurance two years ago.  My husband's business is now, four years later, four times as profitable.  It dumbfounds me.

SACRIFICE
If you don't sacrifice for what you want, what you want will be the sacrifice ~unknown

It isn't easy giving things up, in fact it's down right scary.  I see so often people say that they can't afford treatment, but they also seem unwilling to give things up.  I was also this person.  Before I knew what was wrong, I often didn't follow the advice of others because their advice involved me spending money I didn't think I had.  Maybe I was lucky to get as sick as I did because I had no choice but to seek help.  It was scary realizing how fragile I was and how helpless I was to hang on to the life I had carved out for myself.

I had to give things up, BIG things, things I believed God had given me.  Our biggest sacrifice was our house and one of our two businesses.  We had been blessed with a large home that included space for our karate studio.  It was my house I decided to give up first.  We did this not knowing where we were going.  After living in a rental for two years, circumstances allowed us to move into a house three times smaller then the one we left.  Anyone looking at this from the outside would think this was a horrible sacrifice, but I've never been happier.  Besides the fact that this house is so easy to take care of and is also significantly cheaper, it sits on a lake.  Who can complain about that?  If I had known ahead of time that this is where I'd end up, giving up our large house would have been easy. The second sacrifice was letting go of the licence we had for a large martial arts school.  We spent years training, earning certifications and building a reputation in our community, to only let it all go. Once again, I am shocked at how happy I am!  We created a small martial arts club that we don't run for profit, but as a community service.  I have found a love for the martial arts that I didn't even realize I had lost.

My point? Giving things up is often the best way to hang on to hope.  Loosing things is hard, but it doesn't mean there isn't something better waiting to replace those losses.

My Conclusion

I never thought I would tell someone that accepting their circumstances, demonstrating faith by giving up the very thing you feel you need the most and being willing to sacrifice the things that are most important to you is how to hang onto hope.  On the surface it seems like those things aren't connected.  It comes down to our attitude.  I never said I would give you hope that your life would be exactly how you dream it should be.  I just said I would give you hope.  We all want so much from life, but I think what we all want most is to have a feeling of peace.  My hope wasn't that I would be fully recovered, that was my GOAL, but that wasn't my hope.  My hope was that I would be at peace in my circumstances, that I would have joy in the life I was living, and that I would feel a sense of purpose.  Focusing on those things is what made this struggle so bearable and it is what is helping me not live in fear of having a relapse, because a relapse won't steal my hope.  I don't know what the future holds, but I'm so thankful for the lessons I continue to learn.

It Is Well LYRICS - Kristene DiMarco & Bethel Music (You Make Me Brave) from Faith Community Fellowship on Vimeo.

We all find our own way to manage struggles-my daughter's imagination is her escape

We all struggle, and we all have to cope with struggle. Some of the ways we cope are healthy and productive, some of the ways we cope only causes us more harm. It's up to us to decide if we will take our challenges and turn them into our strengths.

As I have shared before, my whole family has struggled with living with chronic lyme disease.  This blog is going to be about my daughter Jenna, who I think may have had the hardest time out of all of us growing up sick with lyme.

We didn't know Jenna had lyme until she was a senior in high school.  I use to take her to the doctor constantly with physical complaints, but no real answers were ever found.  She also struggled with psychiatric symptoms, before school it displayed itself as emotional instability and separation anxiety.  Once she hit 1st grade my highly intelligent child began to struggle with reading, things spiraled down hill from there.  Her school age years were spent seeing psychiatrist and psychologists for school refusal.  Whenever I brought up physical symptoms they were always attributed to anxiety.  It was such a difficult time for all of us.

To this day, Jenna doesn't understand how strong she is.  Despite her struggles, she graduated from high-school with honors.  She won competitions.  She earned her 2nd Degree black belt and was an extremely talented martial artist.  Most importantly, she has an imagination like I've never seen.  A psychologist told her when she was 13 that he could see her as an author.  She hung onto that idea, and began writing.  Now, seven years later, she has finished and published her first book.  I'm so proud of her.  What I'm most proud of is how honest she wants to be about herself and her life.  So I will now share with you what she has to say in her own words:

"I wrote because I had nothing else to do while I was sick with lyme and having sever panic attacks several times a day. I couldn't leave the house because of the anxiety, I couldn't go out with my friends or even go to school half the time. I wrote because it was my own world, away from everything I really didn't want to do. I wrote characters that were strong willed, and snarky, and could stand up to anything because that's who I wanted to be. Because in the real world where I was plagued with anxiety, lyme disease and depression, being bullied and tormented for all these issues I had, it was so much easier make up a different world where I could be someone else and where I was in control. In the real world I had no control and that caused and still causes me a lot of anxiety from all the uncertainty. In my life of chaos, writing was a way for me to have some solid ground. When I couldn't leave the house, my characters went on grand adventures. When I couldn't stand up to my bullies, my characters beat their enemies into the ground or handled their issues with awesome snarky comebacks. Writing was how I coped.

I dream of one day having my books become famous, to be in real interviews where people ask me in-depth about my books and are amazed with what I have created. Did I ever think it would actually happen? No. So I can't tell you I pushed through all the torment, and sickness, and the hardship, and held on to my dream that I would someday achieve all my dreams, because I didn't. In fact, I gave up on writing many many times. I must have started a hundred books and given up half way through. I hated writing more often than not, because even if I had my characters be strong and smart and go on adventures, I still wasn't. And living through them suddenly only made it worse for me. It rubbed it in more that I still couldn't do these things. New World Mechanism is the first book I have ever finished in entirety, and it has actually been published! It still baffles me. Though, now I am faced with a new challenge, my book is a series, and if people like it, they will want to know the rest. This is so much pressure on me and takes something I did for fun, to escape the real world, and turns it into work for the real world. The pressure I feel for my books is both inspirational and horrible, So, Im not going to tell you that writing for me is a heavently release and escape, because it wasnt at first. It was selfish and a way for me to hide. I'm not going to tell you I sit on a beach all day, drinking ice tea, and writing away like its nothing, because I dont. I sit in my studio apartment, at my disaster of a desk - filled with ripped up pages of book ideas- and cry and glare at my computer 90% of the time. And then there is that 10% that I actually have inspiration and enjoy the writing process. Its not easy, for me to write, and it never was. But I guess that's how dreams work."

Puchase a Kindle Version of this book


Or a PaperBack Copy
https://www.amazon.com/New-World-Mechanism-J-L-Bell/dp/1535187034/ref=sr_1_2?ie=UTF8&qid=1468521945&sr=8-2&keywords=new+world+mechanism

Chronic Illness and Church Attendance

Another Sunday goes by where instead of attending church, I laid in bed.  Nothing is more frustrating to me about this illness then my inability to regularly attend church.  Despite all of the improvements I am making in my health, regular church attendance is something I have yet been able to achieve.  It isn't for lack of trying.  And my legalistic baptist upbringing ensures I have plenty of guilt.  Every weekend I have to remind myself to lay it at the feet of God and not to stress or feel bad when I am unable to get myself through the Church doors.  I spent a lot of time today reflecting why I feel so guilty for my lack of attendance.  Today was especially frustrating because a week ago when I made it almost to church only to have Scott turn around and take me home, I made a commitment to ensure I would not expend to much energy the days leading up to church so that I would be able to go.  So, what happens? I come down with a cold this week, and then on top of that woke up this morning with a migraine.

So, after lots of reflection I wrote down the reasons I feel so much guilt.  Now I will explain them in this blog and hopefully be able to finally let the guilt go.  It's absolutely silly I feel this way.  I don't feel guilty about anything else I am unable to do as much as I do this.

It's my fault
     I have spent alot of time through this illness retraining my brain so that I would no longer blame myself for the things I am unable to do.  I use to feel like a horrible wife and mother before I understood how sick I was.  I never could function in the way I saw other's function and always felt weak because of that.  I have absolutely let those thoughts go and am now working hard to help my girls to stop judging themselves harshly when faced with their limitations.  Despite all this, I still am blaming myself for not attending church.  I thought for the past year or so that it was because I wasn't prioritizing my time well.  The thought of church on Sunday was so daunting because I had stuff to do that day and if I were to attend church in the morning the likelihood of doing anything else later that day was null. It's hard because I can only do so many things in a day.  Literally, a weekday is a good day if I can do both housework and teach a taekwondo class, or do housework and do an errand in town.  I rarely can do errands in town and taekwondo, but sometimes I can.  So, by the weekend there is usually alot of errands and housework to be caught up on and I can only get caught up on non-taekwondo days.  The guilt stems from my feelings that I am placing work and chores, and kids school activities above church.  I didn't know how to flip my priorities around.  It took a few months, and Scott also rearranging his work schedule to help me on Saturdays, but we finally got a system down where I can usually have nothing to do on Sundays but church.  Problem solved? Nope. And this is where I think God is trying to teach me something.  Because despite all I have done to prioritize my time, I still struggle with feeling healthy enough to do anything before noon.  I am trying now, really hard, to let go of the guilt and blame I place on myself just like I did with other areas of my life.

I am setting a bad example for my children
     I grew up with the knowledge that if the church doors were open I would be there.  It is really hard not to have that same mindset with my own children.  Especially where they are sick too.  I worry all the time that if I don't attend church, they won't see it as a priority to set in their own lives.  If I don't go then the family almost never attends either.  Once again, it isn't because they don't want to, its because they also have serious health issues.  Scott and Chelsea work so hard during the week and really need the weekends to rest.  Jenna struggles with the sensory overload that happens at church. As much as I've worried about this, I have realized over the past few years that the girls have a strong sense of trust in Christ.  They may not have had the example of weekly church attendance, but they have definitely seen how much Scott and I have trusted God to meet our needs.

I'm a people pleaser
     One of the biggest obstacles in my spiritual growth was my need to have acceptance and praise from others.  When I was younger, if I wasn't getting positive feedback from those I looked up to then I didn't feel like I was where I should be spiritually.  It took me a long time to move past that and understand my relationship with God was what was important more so then the opinion of others.  Through this illness I am seeing that I still struggle with this.  I don't want people to think I have moved away from God simply because they aren't seeing me involved in the body of Christ.  I wonder if I am sick so often on Sunday mornings because God is still working on this area in my life. My desire should simply be to be living in God's will and I shouldn't be worrying about what other's think of me.  I also am realizing that I have made judgments of others when I stopped seeing them in church.  I've made assumptions without having any understanding of the person's situation. I know one thing for sure,  I will never make that mistake again. It is never our place to make judgement of where someone is at spiritually.

I desire to connect with others
     My biggest sadness in my inability to attend church regularly isn't from guilt, but from a lack of connection.  I feel completely isolated from my church family.  It is hard on the Sunday's I do come to church because I see all that the church body is doing and I am unaware and uninvolved.  What's worse is when I am greeted by someone as though I am new to church or just visiting.  I see people who I have known for years interacting with people I have never met as though they are all very close, and these new people have no idea who I am or that I exist.  That makes coming to church hard because I feel like I'm only looking though a window at everyone else who is actually in church and involved.  It makes me not want to come until I know I can come regularly because I want to feel a part of things and I don't know how I can feel that way until I can come to church regularly and also give time to ministry. Despite feeling this way, I will still try to come to church, I'm just saying it's another reason it's hard.

All I know, is that I don't think you can truly understand the motives behind someone's actions or inactions unless you have lived in similar circumstances.  I am taking from this a deep understand as to why it is difficult for some people to attend church regularly if at all.  I hope to someday find ways to take this knowledge and use it to be a blessing to others.  I hope that in sharing this I have at least given you a glimpse of what it's like to live on this side of the window.  There are many more people besides me who are looking in from the outside and just simply are unable to come in and join the party.

The Next Chapter, Steps to Healing

Just an FYI: my ability to read and edit what I write is difficult.  So excuse grammar or spelling errors!

I have been aggressively treating chronic lyme, babesia and bartenella for over two and a half years.  I knew it would be a long journey, but what has been most difficult is having patience and faith through the slow improvements that are coupled with huge set-backs.  When I don't improve at a steady rate I feel like I'm fooling myself and maybe I'm not really any better.  I know this isn't true, but where I live with this disease so publicly, set backs feel like failures.  

Part of the problem is my own impatience.  I start to feel better and I push myself till I can't push any more.  This always backfires on me and I end up in bed and frustrated.  I'm blessed to be seeing a new neurological chiropractor in our area. (I will post a link to his website at the end).  He has given me such simple tips that are helping and I am starting to understand how my body works and why it is failing me so badly.  One simple tip is to stop and rest BEFORE I feel tired.  What a concept.  I think I needed someone giving me permission to do this to actually get me to not run myself into the ground.  Once I understood why I should pace myself this way it was easier for me to follow this advice. I have felt so much guilt for not contributing as much to the family and the business as I feel I should be.  Stopping when I still had energy to expend felt selfish.  Now that I understand that I'm killing my endurance by the way I have been utilizing my energy, it's easier to allow myself to rest more often. It's easier because I know that by resting more often now, I will be able to do more for longer periods of time later.  So far so good, my endurance is better.  It's hard sometimes to follow this pattern of going and stopping, and I notice how much more fatigued I am when I push myself harder then I should, but I'm trying to make resting a priority and I am saying 'no' more often.  It stinks, ALOT, having to tell my daughter no, sorry, I can't make it to your track meet because I have to rest to utilize my energy somewhere else. But my eye is on the long term goal of being completely healthy, thankfully my family understands that.

I'm also changing more things in my diet.  There is so much to learn in regards to this.  The change has been on going for me stemming back well before I even knew I had lyme: no gluten, no sugar, less dairy.....ok, maybe LESS sugar, having NO sugar is really hard.  I'm getting there, slowly.  I had my gut bacteria tested, my lyme brain doesn't function well enough for me to even begin to explain that, but needless to say I have basically almost no gut bacteria.  I'm sure my gut was a hot mess before I started treatment and probably one of the factors in my quick decline.  Now, after a couple of years of antibiotics, my microbiome is really messed up.  My body isn't going to be able to do its job and keep the lyme bacteria in check if my immune system isn't working.  So, if I ever have a dream of getting off treatment I need to mend my gut.  I'm now learning all about kiefer, fermented foods, and prebiotics.  These are things that I had a superficial knowledge of, but when in treatment there is so much to learn, and I could only focus on the things most pertinent at the time.  It wasn't until recently that I was able to allow my brain to stretch a little further.  I was only able to learn this new information now because I was ready for this next step in my journey.  

So, right now my biggest goal is to get off antibiotics.  I attempted recently, but only lasted about 10 days. I'm now on a doxycycline pulse with some brief bursts of cist busters.  (Doxi drives lyme into the cist form quickly, so we are blasting those cists to allow the doxi to work) I will attempt to switch to complete herbal treatment again in a few weeks.

I'm treating bartenella herbally with success, I'm herxing which tells us the A-Bart tincture is working. The most exciting news is that I've been off babesia meds for six weeks and am still symptom free!  WooHoo!

Check Out Richard Matthews Site: http://www.neurodoc4u.com/

I'm ready to rejoin the fight

It's been a long time since I have written a blog.  I abandoned this site for awhile for a couple of reasons.  The biggest reason was that I simply needed a break.  When I reread my last blog entry I'm reminded of where I was at emotionally at the time.  I was at a point in treatment where I felt stuck.  I wasn't making improvements like I should and I was financially unable to access the treatment that I knew I needed.  Chelsea had become bedridden and completely stopped attending school.  We knew she needed either IV meds or IM injections but were unable to afford either.  Financially we were a mess.  It was the middle of winter and our bank accounts were at zero. All of this was happening, and online I just seemed to be reading post after post from other people with lyme who were not getting better and were unable to access treatment.   All of this, and the many stories of people losing their battles with lyme, I was feeling hopeless and knew that I needed to put my attention elsewhere.

One of the most import things I have learned on this journey is the importance of where your focus is.  If I am to get well I need to be paying attention to things that will pull me towards healing. I didn't want to ignore the suffering of others, but I need to take care of myself if I ever had a hope of being able to help others. So, I pulled back.  I stopped following alot of the lyme pages I use to follow on facebook.  I placed my attention on things that had nothing to do with lyme disease.  I didn't want to live as a sick person anymore.  So, my body remained sick, but my head became the head of someone who was healthy.  What I mean by that is, I set goals for myself.  Goals that had nothing to do with lyme disease.  Goals that I knew I would need to be well to achieve.

What I did pay a lot of attention to what my spiritual life, even more so then I already had been.  Over the course of the winter of 2015 things slowly improved.  More positives were happening for us then negatives.  Work became available to Scott, we were awarded grants to help pay for Jenna and Chelsea's treatments, and as the snow of 2015 finally started to melt, things continued to get better.

 For the first time, in a very long time, we felt things were finally going well for our family.  I won't blog about the details of last year, at least not today.  But, 2015 was by far, the best year Scott and I have ever had together.  Thank you to all of you who were a part of giving us so much hope.

And hows our health? Well, Scott is working six days a week and doing more physically then he has ever been able to do in the entire time I have known him.                                                                                              Jenna is slowly improving, we are in the middle of making some changes to her treatment plan, but just today she texted me all excited from the top of the Beehive in Acadia National Park! Yes, she climbed it!

Chelsea has attended school all year, done after school activities, maintained straight As and is currently slowly getting back into shape as she is a part of the spring track team!

Oh, and what about me?  Well I have learned some hard lessons about not over doing it, and am now slowly regaining my strength and increasing my endurance.  I will be blogging more about my healing journey as long as my brain functions well enough to allow me to do so.  I was ready to return to the lyme world and share my journey last fall, but unfortunately I had spent most of the winter unable to read or write well.

  We are all at a crossroads in treatment.  We are still fighting the tick born diseases, but now at the same time, are trying to repair the damage the diseases and the antibiotics to treat the diseases have done to our bodies. We are all attempting to transition to herbal treatment protocols.  Scott and Jenna are at that point now, and Chelsea and I are very close.

So, bottom line, I'm back in the saddle. I have gotten through the dark valley I was in and am now ready to not only become active in the lyme community again, but I have some pretty big ideas for my future professional aspirations as well. Don't worry, I'm pacing myself, but my eyes are way ahead of my body and I'm envisioning myself as a healthy person who is helping others.

What Takes More Faith

It has been a year and a half since lyme entered our daily vocabulary.  My husband, my daughters and I all now have experienced the joy of finally having an answer and the fear associated with the difficulty of treatment.  God has been faithful to us, and we are all using this time to grow spiritually.  We try to focus on the amazing blessings we have experienced and be thankful even in the midst of struggle.  

We are all improving, but at different rates.  This journey is long and even when well there is always the risk of relapse.  It's easy to focus on the financial burden this disease has placed on us, but God has given me numerous reminders that there are many more people in our community who are just as sick and unable to even begin the steps to diagnosis due to the financial cost.  It is absolutely, nothing short of miraculous that we have been able to continue to pay for treatment.  

Here we are, in January, the hardest time of year for our family financially.  I have been praying all this past summer and fall about how we would continue to function once we hit this difficult time of year.  I've been seriously hoping that I would be able to return to work part time this month, but here we are and I am not feeling ready to return to work, even part time.

We had been hoping to go into January caught up in our 2014 expenses.  Unfortunately, this chimney season wasn't what it usually was.  Because of this, we have some serious bills hanging over our heads.  I fully trust God to supply our needs, but the question I'm not sure the answer to is this: Should I continue to wait and rest and trust God to miraculously take care of our needs, or should I take the step, in faith, and attempt working part time, trusting God to supply the energy and strength I need.  I don't know the answer.

It's funny, how things work out.  Scott was provided with the perfect job a few weeks ago, and he also got a handful of chimney calls last week.  I thought this was the answer.  Then, Scott develops a severe health issue and not only did it cost a lot of money out of pocket, but it severely affected his ability to work.  This current health crisis will soon pass, but I'm still left with the question of HOW God wants me to show my faith.  

Here is my prayer, or test:

This week I am going to attempt to get up everyday as though I was going to work.  I am going to see how well I function.  I am going to be in prayer that one of two things happen, either I am able to have the strength to function or we will be provided needed fiances through another venue.  (God seems to like to provide chimney jobs when we are in financial need.)  I am hoping, praying, that I can be given some clear direction.  

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!

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.