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.