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."

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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.