In the Fight of My Life

It has been an okay weekend.  Not the greatest but not the worst.  I am not sure if what was going on Thursday/Friday was another herx or not and I am okay with not knowing.  Yesterday was a rough day all around...physically and emotionally.  The good thing is when you are in bed all day not feeling well and you can't sleep, it gives you a lot of time to talk to God.  Between yesterday and today my saying, "I'm in the biggest fight of my life" has grown to mean more than I thought in the past.
This  disease is not only nasty in how it makes you feel and the bacteria is so complicated and difficult to kill but just the surrounding circumstances makes this more than a physical battle. Its a mental one as well and more times then none I feel the spiritual battle raging around me.
Chris and I were going through the mail and paying bills today.  This is something I use to do without Chris but in the last 4 months have felt less and less competent in doing.  My mind does not process details like it used to. I realized this last December when I thought I payed a doctor bill and found out later (after I was ready to rip off someones head only find the mistake was mine) that I confused it and my mind had interpreted things wrong.  It is difficult to explain but I would have done it again today had it not been for Chris.  Lastly, with one arm "tied up" I really needed him.  It has been a while since we have gone through the mail. I used to do it on the first and fifteenth of the month without Chris having to think twice about it and now my mind doesn't get it at all.  It has really blown me away to see how my mind has changed just in the last year.
We were going through the envelopes and most of them are doctor's bills or insurance stuff.  Again, I don't understand it and I get overwhelmed if its not plain and simple....doctors and insurance stuff never is. The best way to describe how my mind works is like a child who has just begun to read and you hand them a novel.  They try to read, they pick a few words but quickly get frustrated and overwhelmed.  We have received insurance papers that say they approve the midline and one that says they approve the medication and then today we opened one that says they don't approve the medication for more than 4 weeks but they approve the midline.  They very specifically explain they deny covering the medication past 4 weeks because there isn't enough literature supporting the use of it for Lyme Disease for more than 4 weeks.  As soon as I read that I heard in my head, "you are in the fight of your life".
I want so badly to go on a "mission" and educate and inform and talk to as many physicians and insurance and politicians and who ever I can get my hands on and tell them about this disease.  Most people don't get it and think I am lying when I mention the medical board pulling licenses of doctors treating Lyme.  They have put their head in the sand that Lyme is even an epidemic, not allowing for research to be done that would allow the "literature" they need supporting the treatment of Lyme.   The sad part is there is evidence, testimonies, and doctors' documentation supporting what treatment works...they just choose to ignore it. If only I had the energy and the clarity of mind .....
So this saying keeps rattling in my brain and then I remember yesterday.  Yesterday was a full blown spiritual attack on my husband and myself.  Because I am sick, unable to function most of the time as a wife, mom, and just a person, Chris has had to take up most of the slack at the same time he has started a new job ministering to people, and is going to school, not to mention we have moved twice in 6 months. On top of this is my diet which causes two separate meals to be prepared for most meals and I am now one handed and can't do a lot of it....so it rests on Chris' shoulders.  Basic house chores have mostly ceased.  Through God's grace and mercy we have managed to stay caught up with the girls' school since it can be done in bed, on the coach or at the kitchen table and it amazes me that my children have learned anything at ll and yet my 4 year old is reading and loves it.  They dress themselves, where I lack Becka fills in and helps and Chris bathes them. As if this wasn't enough, the medical bills continue to pile up of which we have to sort through and continuously "clear up" glitches and fight through claim after claim that is denied due to the tag, "LYME".  Its not only the medical field that sits in confusion but the people around us don't understand as well. This is only the tip of the ice berg.  So, as I contemplate this and more, the saying, "I'm in the fight of my life" has a fuller meaning.
There are days like yesterday when the world feels like it is crashing in around me and I feel like I am not going to live through it.  I prayed and prayed some more and I texted or sent emails for people to pray who I know will pray without having to know the details.  At the end of the day the clouds had lifted and the bullets had ceased and I was still standing.  If you don't know God, truly have a relationship with Him then you have not experienced spiritual warfare and would not understand.  It feels like the powers to be are over you fighting and you want to scream, "hello? I'm in the middle here" but you can't get a word in edge wise. The cool thing is, if you know God, truly have a relationship with Him, than no matter how nasty the battle gets you know Who is going to win. But, at the time the battle is going you're not sure you are going survive to see the end.
What makes battles more bearable and what helps us stand up underneath it all is when we are supported by fellow believers.  But here is the tricky part....its support whether they agree or understand or know what is going on.  Unwavering support.  Again, people are God's hands and feet.  Without that support it feels like we are on the battle field alone and the world is against us.  With that support we have the confidence to fight to the bitter end.
If we are true believers we should support each other without judgement or whether we understand or not.  Isn't it enough to know a "brother" is down?  In the time it takes to get the "details" and try to understand what happened he could die.
Unfortunately, I have experienced the lack of support more throughout my life that I have always tried to be independent and do things on my own and when a rare person genuinely wanted to help I had difficulty letting them and I asked why and was leary or felt unworthy.  I am learning so much through this disease but its painful.  Not only do we judge as on lookers but as the one needing help we judge as well.  We are shocked by who doesn't help and who does.
In it all, God has a plan.  It is like a game of chess....I'm just one of the pieces on the board.  The only difference is, I know who is in control of the game and who is going to win.  I can't imagine playing this game called "LIFE" without being on His side.

This weekend has been the roughest yet since starting on antibiotics January 21st.  I have been on Doxycycline since January 21st, started pulse therapy with Flagyl February 19th, had 4 weeks of cefotaxime injections, and have now been on Rocephin via IV for 2 weeks....all antibiotics.  Last Monday I started getting regular, daily headaches.  I had headaches a couple weeks ago and it was thought by Dr. Kolodjski to be the Flagyl causing them.  Since starting the Flagyl, every weekend the dose goes by by 250 mg and its only taken Friday, Saturday, and Sunday.  Chris and I are thinking that my rough weekend might be the result of the Flagyl.  I don't know, but I do know that its been the roughest.  A good word to describe myself is "mush".  The body feels like mush, the brain feels like mush and I basically feel useless as mush.  If I'm not lying down than I feel miserable.  We have questioned whether this is the infamous herxheimer reaction we've been told about but there hasn't been a fever.  On the contrary, I tend to go down in temp rather than go up.  The headaches are there but not the chills.  It would be nice if we knew for sure because if its a herx than we are celebrating.  I know that sounds like an oxy moran (I feel like one sometimes) but the horrible reaction that is supposed to cause flu like symptoms affirms that the medicine is working and bacteria is dying.  Dead bacteria would be very good news.  I have never wanted something to die so badly as I do this bacteria and all its friends.
So, I have succumbed to sleeping or surfing around on facebook and tending to my farm.  Pretty sad actually.  Not able to do a whole lot else, particularly with one arm and one hand.  I look forward to Monday through Thursday because I don't take the Flagyl...than I dread Friday.  Next weekend will be the last increase in Flagyl.  I will be on 750 mg Friday, 750 mg Saturday and 750 mg Sunday.  I don't anticipate I will be much use next weekend either.
I was reading one of the books I picked up at the library called "Beating Lyme".  As I have combed through it I keep thinking, "I wish everyone would read this".  Part of me says, "Why read, I already know quite a bit about Lyme" but I know I can alway pick up something else.  Tonight, I picked it up and began reading to kill time and I am filled with such a mix of emotions.  On one hand I am encouraged as I read this persons battle because its me almost to a "T".  Sometimes I wonder if I really have Lyme because mine hasn't progressed as fast and severely as many others. But, when I read something on Lyme I am quickly affirmed that Lyme is what I am dealing with and I become thankful that I haven't had it as bad as others.  Thank you God for sparing my family and allowing to me to be able to what I have been able to do.  On the other hand, I am filled with anger as I continue to read about the politics behind this disease and as a result, millions of people that are suffering from Lyme and don't know it.  It is difficult for people to understand that there is a disease in America that is being ignored because professionals have personal agendas.  Its made me want to make it my life mission to inform and educate all hospitals and doctors.  This quickly turns into an over whelming feeling because I no more have energy today to tie my shoes much less to fight this battle outside my own house.  Over whelming feelings turn into fear as again I read that the disease can be transmitted from mother to baby in the womb.  Than I started reading about how the rash isn't always a bulls eye.....bulls eye...and my memory quickly goes back to May of last year when Madilyn had 2-3 rashes on her chest.  We weren't sure what they were.  Becka fought two cases of staph infection when she was 3 and we were told she was at a high risk of staph infections anytime there was a break in the skin.  So, when Madilyn's showed up we kept an eye on it and when it multiplied we called the doctor who then sent us to the ER where a doctor laughed at me for bringing her in (I have never wanted to hurt another human being so much).  I think back now and both Madilyn's and Rebecka's rashes were bulls eye rashes.  Since this diagnosis we have been thinking back to when I possibly could have contracted Lyme and I remembered in college when I had a rash across my body....I thought they looked like hives.  This could have been the beginning of Lyme.  If this is the case I have had Lyme for almost 15 years. This blows me away.
Its easy for all these emotions to go hay wire and because my mind is mush it is very difficult to work through them.  I will pray and trust God about my girls.  This is easier said than done and is a daily surrender.  He knows everything and is in control of everything and is the only One I can trust when it comes to this disease or anything else.  This disease is testing everything in me.  It tests me physically. It tests me emotionally (more and more) and it tests me spiritually even more.