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.

Another Herx?

Today has been on the rough side.  The new medication I am on to help me sleep at night really works.  The first night I took it, Chris and I were laying in bed to watching an episode of Celebrity Apprentice and I was out within the first 10 minutes of the show.  It works really well but I get up still begging to be in bed.  I got out of bed this morning and its all I can do to get going but then on top of that I was hurting.  I was hoping things would shake off by 10 or 11 but they didn't.  Almost my entire left side hurts. I wince in pain if I move it.  The problem is, I can't use my right arm because of the midline so it was difficult today with the left side hurting. All day I have been trying to figure out why it hurts so much. I ran out of fish oils two days ago and I know that it helps some with joint pain.  I wondered if this was why I hurt.  I also wondered if my left side just wasn't mad at being worked so much and taking up all of the slack.  Both made sense but the pain is also very familiar.  It feels a lot like the Tuesday I had the first herxheimer reaction only just the left side.  Advil doesn't do anything for the pain.  It does make me very thankful for the days I don't hurt because before we started seeing Dr. Kolodjski (natural health doctor) I was in pain each day. It those exact spots that hurt today....on the left side.
Becka didn't have gymnastics today so I rescheduled my dressing change for the midline for this morning. I'm glad I did. It was all I could do to pack us up and get down there and get back. On the way down there I questioned whether I should be driving or not since my mind was so foggy.  We got home and I went to bed.  Becka and Maddie brought their school stuff in and sat on the bed next to me and we finished school.  Chris came home and fixed lunch for us all (which is really two separate meals) and got me hooked up on the IV before he went back to work.  I don't know what I would do without him.  He is so good to me.
The girls went down for a "nap" (if only the youngest would actually nap) and after my IV was done I went down as well.  I am sleeping a little better in the afternoon since I started the sleeping medication at night.  I'm not as jumpy to every sound.
Since Becka didn't have gymnastics this afternoon I was so looking forward to taking Maddie to dance.  Due to their activities overlapping on Thursdays and an arrangement we have with a friend at church, I don't usually get to see Maddie at dance and I miss it.  Today, I was so thankful we didn't have gymnastics.  But when Chris woke me up at 5:15 I was hurting even more.  My body yelled to stay in bed but my heart yelled to see Maddie.  I mustered all the strength and pain I had and took her to dance.
Again, watching my girls in their individual activities is such therapy for me.  I sat there watching Maddie and I beamed.  She is incredible with how quickly she picks things up. It truly blows my mind!  I am a very proud Mamma with my girls and it is priceless "medicine" to watch them.
Maddie and I got home and I immediately put on my pj's and climbed into bed. Maddie climbed up with me and then Becka and the two of them sat there and colored together while I layed there.  Definitely a treasured moment.
I am looking forward to what tomorrow brings. As I got up to try to get some dinner down I noticed the right side was beginning to hurt.  I would not be surprised if I wake up tomorrow morning with my entire body screaming, "DIE BACTERIA, DIE".  Though I don't look forward to the pain I consider the  pain a great victory.  Tomorrow will tell if this is another herxheimer reaction or not.  Keep in mind I take the Flagyl tomorrow so I am not expecting to be in great shape tomorrow or this weekend.  If it means bacteria is dying, I'm all for it. Bring it on!!! I am off to bed.

Becka and Maddie coloring on my bed. Taken with my phone.

Big Praise!

Our appointment went well this morning.  We went in with our questions and walked out with answers to almost all of them.  It was confirmed that what I went through last Saturday-Tuesday was a herxheimer reaction.  This is such good news!  This means that we are making progress and that the meds we are on are working.  Dr. Salvato put in orders to continue the midline.  We asked her what the plan was when this midline had to be removed and her response was to put in another one. I liked this answer as well.  I don't know where they will put it since the reason its in the right arm is because they couldn't find a vein in the left arm, but I am going to leave this up to God.  I was so afraid that we would be on to something that works and than the midline would have to come out.  As I have always said, the midline is my best defense against this disease.  She ran another Lyme test today with the expectations that there will be more titres positive on it.  What I have read is that some people can have completely negative tests but once they start treatment (the antibiotics) the test shows up with positive titres.  So, I will be very interested to see how this comes out.  Keep in mind that this is the Western Blot done through LabCorp and not through iGenex.  The last one done through LabCorp only had one titre on top and one on bottom positive.  Later, Dr. Salvato will be doing this test looking for no titres positive and will determine treatment is done when we have two tests in a row return with 0 titers positive.  She is also retesting our CD57. This is another blood test that is used to verify Lyme.  My first test was 28 which she called "pathetic" today and said that we want that to be 180 before we call treatment done.  I like have "goals" or ways of measuring our progress.  Keep in mind that Lyme is never considered "cured" but people are said to be "recovered" with a chance of it coming back.  There is no sure way to tell if all the bacteria is gone.

We asked today about co-infections and at this time non are detected.  This is also a very big thing.  It is unusual for Lyme patients not to have co-infections.  She only tested for 3 of the big ones and even though one of my levels for another test was high indicating a co-infection, non are apparent at this time. Co-infections can further complicate fighting Lyme so this is a big positive for us.

We talked through the other meds and it was decided to continue on all them. I brought up my lack of sleep and she prescribed something to help me sleep at night.  I thought two meds Dr. Forester put me on were to help with this but she said they only helped with the joint and muscle pain.  This is pretty controlled (except during the herx) so I'm glad we aren't messing with them.  She also gave me a prescription for Maxalt which is a med for when I had migraines.  This will help with the really bad headaches I got around and during the herx.  Its good to know I am armed and ready.  Bring on another one. I'm ready for some more bacteria to die.

I got to go watch Becka do gymnastics today. They rescheduled her Thursday rehearsal for today.  I begin to tell you how much it does for my pysche to watch her.  I plug in my headphones (because the room gets pretty loud with parents) and I watch her go for two hours.  There is something about watching her that makes me have more energy (so I think sitting there) and makes me just "happy".  I don't know what it is but its good for the body.  Maybe even an "alternative therapy" for me. I love watching her over come and accomplish and succeed and have fun.  It is rejuvenating and where the disease has aged me, watching her brings back life.  Its pretty cool.  I remember sitting there today so thankful that I can go and watch her and go and watch Maddie dance.  I am so thankful that I am not bedridden or wheelchair ridden that I can't go and watch my children.  I can't clean my house or make meals right now but I can watch my children grow and enjoy them as they do the things they enjoy.  This is a HUGE blessing!  Thank you God!!

One thought I wanted to share that I hope has come across my blogs.  I have several books I have picked up from the library about Lyme or about christian books about overcoming adversity and I was staring at one sitting on my night stand the other night.  Its called "When Bad Things Happen" by Kay Arthur and I have not picked it up and read it.  I stared at it and I realized why I haven't read it. I found out about the book from another lady dealing with Lyme and I was hoping to find something in it that would point me in a direction in God's word. I have had a difficult time reading my Bible because of a thirst and hunger for something very specific but I didn't know what it was.  I struggle with the title of this book because I don't look at my circumstances as necessarily a bad thing.  I'm not sure I can explain this.  Don't get me wrong.  The last 10 years have been a challenge and I don't care for God's timing at all.  I have worked through anger at this disease.  But I am not angry at God. Never have been.  Disagree with Him...yes. Lacked understanding..yes! But not angry at Him or at anyone.  I know that my God has a plan for me. That sounds so cliche anymore in the christian realm.  We often interpret it as something positive but the Bible says we will have trouble.  He doesn't say "if". He says "when".  I know that God has a bigger plan and I am just a piece of His grand puzzle.  I believe my Lyme involves so much more than me. I believe He is using it to teach me but that He is using it to work on others as well and I will never know how far out the ripple goes.  Knowing that there is always a reason for things (there are no accidents or coincidences) I look for what He may be doing.  He is always up to something....always.  I believe among the many things He is trying to show me, one of them is trusting and relying on Him. I believe another is learning to ask for help.  It is weird to put those two in the same paragraph but I believe people are His hands and feet.  If I deny or don't ask for help than I am like the guy on the roof that is waiting for God to help him.  Every possible thing comes his way to help and he denies them all.  When he gets to heaven he asks God why God didn't help him and God replies, "I sent you a boat, a helicopter, ....".

My God has my back and is working on me.  It doesn't mean its easy or fun but I feel Him at work in my life and I know He is there and I wouldn't have it any other way.  Its real and its alive and you can't find anything like it on this earth.

I am fighting a big headache right now so I apologize if this posting is jumbled.  The headaches, after Tuesday, have let up till today.  Tuesday was the roughest day so far since we have been on the antibiotics. It was a strange day and I was afraid that I would wake up Wednesday with things worse. I told Chris if the pain got any worse I would need something for it.  But, Wednesday, I woke up and was in pain but near as bad as Tuesday and it was in different areas. My lower back was really bothering me which Chris said sounded more like the "flu" like symptoms we were expecting. I did school with the girls laying in Becka's bed.  I was able to function a little better but than was exhausted by about 2 but the day, on a whole, was much better.  Thursday was as if I never had Tuesday.  I was back to my typical Lyme self where I am sluggish but not in a whole lot of pain.  I took Becka to gymnastics and when we came home we layed on my bed and played Connect Four and I tickled the mess out of her with my cold feet.  By the time Chris and Madilyn got home I was exhausted and completely spent for the rest of the evening but I haven't "played" like that in months, maybe a year.  It felt so good to have some one-on-one with Becka and to be able to have fun with her without being a bump on a log.  Playing with her was well spent energy in my book.

It was incredible to look back at the previous week and a half.  But than Friday came again and I have to say I greeted it with a little apprehension knowing that we were going to full dosage this weekend.  I wasn't sure if it would be a rough weekend again, although I would welcome it with open arms if it meant a herxheimer reaction.  I have noticed a cycle of every 4 weeks the weekends are a little rough and it appears that they have gotten rougher.  Burroscano's paper mentions the herxes being cyclic but that they would get easier as time past.  I don't believe we have had a herx before last weekend and we haven't gotten confirmation that last weekend was a herx.  It still blows my mind how bad Tuesday was and yet I was at such peace as if being carried and cradled by big strong, protective arms.  There really aren't words to describe it.

After last Tuesday we definitely had some questions for Dr. Salvato.  Because I don't communicate well (I tend to forget what I'm going to say and I don't think clearly particularly on the spot) and I don't remember things well, Chris called her office to ask our questions.  I was so afraid we would be told Tuesday wasn't a herx.  Chris called and left a message.  A lady from the office called him back but said she couldn't speak to him because he wasn't the patient and so he gave them my cell phone number.  I didn't realize this so when they called it woke me up from a nap and I didn't answer because I didn't recognize the number.  By the time I figured it all out it was 5:00 p.m. I called and left a message and her office called me the next morning.  I had my notes so I could remember what I was going to say and so I could take notes but I wasn't allowed to ask any questions. I was told that if I had questions I needed to make an appointment.  I felt this was all unusual but nothing about Lyme has been anything but unusual.  I sense that they are watching their p's and q's very carefully and are being extremely guarded.  This works for me as I would rather speak to the doctor face to face with Chris so there is another brain in the room to help me remember and interpret.

So, we have an appointment tomorrow morning to ask her some of our questions.  Among our questions we want to know if last week was possibly a herx.  Dr. Salvato at our last appointment had mentioned something about immunoglobin and if it was a certain level they could give me something through the midline to support the immune system.  All we know is the first set of labs showed the level to be normal. The second set of labs she stated they were waiting to get that test back...we need clarity on this. We are also hoping to get clarity on which specific co-infection we have.  It appears I may only have one which would be a blessing and will make fighting this stuff a little easier.  We are going to ask what the plan is after the midline.  I fear making progress with the midline and than it having to come out or insurance discontinuing their coverage.  At this moment we are covered through May 2 with the midline but only April 28th with the actual medicine.  This was after being denied because somebody somewhere had the wrong address and birthdate.

So, it has been a fairly typical weekend despite the increase in Flagyl.  After Tuesday, this weekend felt pretty easy and doable. I struggled this morning feeling steady and stable and getting the girls ready but I ventured to church.  It felt good to be in His house. I came home, got some food in me and did my IV dose and went to bed.

Last Monday I had an experience where I felt the Lord tell me something but what I felt He told me has had me thinking since then.  I wasn't going to say anything to Chris about it as I continued to ponder what I thought I heard but then Monday night as we were praying with the girls before bed, Becka prayed something that completely floored me and I had to share with Chris my experience earlier that day.  Monday night I prayed that if it was really God talking to me, which the message was so unusual I had a difficult time thinking it came from my conscious, that He would remind me of it the next day.  Tuesday came and it was my most difficult day and yet I immediately remembered what had happened and even in the midst of how I was feeling I was at such peace.  It has impacted several moments in each day since.  On one hand I feel I should be blatently honest in my blog but the other hand I don't feel this would be accepted well and so I continue to ponder and pray as to what I am to do with the information.

I covet your prayers as we go into our appointment tomorrow morning and as we continue to face this disease day after day.  I would like to say I have seen very subtle differences but am guarded in doing so only to find out they aren't improvements after all.  This last week was made more feesable due to some very sweet people blessing us with their time and talents.  It is really incredible how one gesture will carry you a long way.  People truly are the hands and feet of Christ.  Thank you for allowing Him to use you.

It has been a rough few days.  I had the pressure on myself that today needed to be better since Chris goes back to work and the girls have school and their activities.  It didn't happen.  I had a rough nights sleep, which I haven't slept well the last several nights.  I got up around 5 for my nightly visit to the bathroom and discovered that almost every joint and muscle in my body hurt.  I crawled back into bed hoping when I got up again it will have disappeared...been a bad dream.  Nope! Didn't happen.
Today is day 4 in bed. Last Monday the headaches started. Then Friday I began to feel bad and wanting to be in bed and each day since has gotten worse.  Chris and I weren't horribly surprised since the weekends are when I take the Flagyl and each weekend it goes up in dose.  This last weekend and the coming weekend are the biggest.  Yesterday the nausea was pretty bad. My body isn't happy if its vertical but its not like I  crash when I am horizontal either. Chris had some Phenergin from when he was sick back in November and I took some yesterday in hopes it would calm my nausea and knock me out.  It helped with the nausea but it didn't knock me out.  All weekend my legs felt heavy and unstable, my head throbbed and I was nauseated.  No appetite and it has been all I can do to get food down but I know I must to support the meds going into my body. My feet and hands are freezing but the rest of me is hot.  I can wake up from a nap sweating but still have feet that are freezing.
Today, I have all of the above only now with pain.  The joints and muscles that hurt and struggled before I saw Dr. Kolodjski now scream out in pain once again.  There is absolutely no energy but I can't sleep either.  If I even try to move it is met with pain.  If I hold still things aren't as bad, but the nausea was so bad this morning it challenged my  breakfast and wouldn't let up even after I layed down.  I took another Phenergin this morning and it calmed it down.  My headaches do not respond to advil nor does the rest of my pain.  If the pain gets much worse I will be begging for something stronger than advil.
The good news in all this is Chris and I think this is our first herxheimer reaction.  That is, the body is reacting to toxins put off by dead bacteria.  If this is the case, then the meds are working and bacteria is dying.  That is cause for celebration in my book!!! (where's the chips and salsa?)  We got our first labs back from being on the IV and they are all good. We are a little confused by one that is supposedly not back that we thought had already been done so we need to put a call into the doctor.  So far the labs and the IV are doing well and we get to continue which is all good news especially if they are working.
I was laying in bed this morning (can't do much else) and thinking how things never turn out like you think they will.  We were looking for what was described to us and "flu-like symptoms" with fever, chills and headache.  It wasn't till I picked up my book again last night and read that the authors herx was not with fever and headache but with worsening of his Lyme symptoms.  Though I am leery to say this is a herx as to not be disappointed if told by a professional that it isn't, I believe we are making progress.  Weird to be saying that when I am so miserable today but as this author wrote, "If you are getting worse or getting better than you are making progress.  If you are staying the same than something isn't working".  Chris and I are hoping that the meds have finally made some bacteria mad.  This thought on expectations made me think about the Jews and their expectations they had of the Messiah.  What they expected and what God planned were totally different and as a result the Jews, and many others, have missed Jesus.  Our pastor did a great sermon Easter morning. I am so glad I was able to be there and hear it. It followed me to my thoughts earlier today.  Why the Jews missed Jesus and why we shouldn't miss Jesus today.  Expectations.  So I asked myself...where is the median between planning and having expectations and not planning and having expecations at all?
As I faced each minute today I felt God's hand on me calming me down. Yes, I was in pain and I wondered who would take care of my children today.  They have expecations too. A year or two ago I would have fretted up a storm but today I rested in one fact. My God has everything under control. Oh, I knew that a year ago but I was still trying (and was a little more able) to do things on my own. But the peace that comes when you actually surrender to it is incredible and strengthening! Be still and know He is God. Not easy to do in our world and with our expectations.  God reveals himself in mighty ways when we are in the desert and for some its the only time we will slow down and listen and drop the expectations.

II am working through coming to grips with a new realization.  I need help.  Thats my realization.  I don't like it.  Because of my childhood, I grew up very independent.  I have been an independent woman.  This worked well for me till I got married.  This is when my independence was first challenged. If things didn't get done, I did them.  But my second year into my marriage my husband and I got into our first really big "fight" (and I'm not sure we have had one since to this level) and what it came down to was he needed to step up to the Godly leader God designed him to be and I needed to back off and let him.  So very difficult for this independent woman to do, but through the years I have continued to learn this lesson, just on different levels.  Like working with numbers....in one grade you learn to add them, and the next grade you learn to subtract them, each year adding on to what you already new but taking it a step further.  I don't want to claim I have learned this lesson completely or I'm afraid God will show me otherwise. 

I saw my independence challenged again in my job as I tried to prove I was capable and just as good as the next guy and was continually told I wasn't there yet.  I had a difficult time accepting this.  I look back on the last five years and can see where I have tried holding onto my independence as my skills began to decline.  Its not easy to accept that I need help cutting my meat. It wasn't easy accepting that I couldn't play the piano like I used to.  The mind can do funny tricks.  I began questioning whether I ever played like I thought I did.  But I knew I used to be able to cut my own meat.

I knew about 2 years ago, when I prayed and prayed God would heal whatever was wrong with my hands and He didn't, that God was taking me through something to guide me to fully rely on Him.  I don't remember when it fully hit me but I remember when I came to realize that I didn't fully trust Him and I didn't completely rely on Him.  I knew this wasn't good, nor how He wanted it to be.  But I still relied on my own "skills", both mental and physical to get me through things.

Sometime last year in the midst of selling the house and trying to do things on my own I noticed I got frustrated a lot easier.  Fall started and so did school and my patience was depleted.  Slowly I have been more unable to do for myself and more frustrated that I can't do and be what I used to do and be.  

Last fall I noticed I couldn't keep up with the house work and I couldn't explain it.  I remember just beating myself up for it. "Get a grip, Elizabeth", "Pull it together"...but I tried and it just gradually got worse.  I would almost get caught up and than have a couple bad days physically and I'd be behind again.  When we were told it was a muscle disorder I began to give myself a little slack but not a whole lot.  I was still trying to do things on my own, not wanting to admit I needed help with some things.

Then in October I took another turn for the worse and I really struggled with keeping up with the demands of life.  I remember asking Chris what he thought about someone coming in once or twice month to clean house, but both of us knew we couldn't really afford it. 

My frustration levels soared higher as I tried to everything on my own.  January we got the Lyme Disease verdict and since then I have been piecing things together. Things started to make since but God had more in store.  I was so glad we had an answer but little did I know how complicated it was going to be.  Its not like a car, where, once you know what is wrong you order the parts and fix it.  Oh that would be nice. It has been one struggle after another, escalating the frustration level.  I would get up in the morning happy but within and hour or two be in a bad mood as I tried to do things, normal run of the life and day things, and would find difficulty in doing them...in being independent.  I couldn't figure out why I was always so frustrated.  This wasn't like me.  Where did I go?  

Everything I had read about chronic Lyme said the best defense was antibiotic through IV.  We find a doctor two weeks ago in Houston that will help with Lyme and she prescribes an IV.  I'm thinking, "okay, now we can get this rockin' and rollin'". I knew it wouldn't be "easy" or "fun"...nothing has been that way for years but if this is what research said was my best defense in fighting Lyme than thats what I wanted. If you had cancer wouldn't you want what was the best in getting rid of the cancer?  You go through the period of being angry at it and wanting to fight it with all you have so you can move on with your life and be what you once were.

At first we were told it would be in the left upper arm.  No problem.  Can't get it wet, keep it clean....this wasn't new because we went through similar limitations with the muscle biopsy incision.  Then we go in to have the midline put in and they can't put it in the left arm because they can't find a vein.  They put it in the right arm, in the crook of the arm.  Then I am told that the longevity of this midline is determined by how much I use my arm.  Basically, I was told to avoid using it.  Hello, its my right arm....I'm right handed.  

The first couple days went okay since Chris was home and they were over the weekend. Then Tuesday hit and the challenge began and the frustration level went up again.

I came to the realization this last Monday that I can't do it by myself.  There is a part of me that knew that and could tell you that but then wouldn't let anyone help me because that challenged my independence.  I finally understood my grandmother when my parents went out to stay with her and "help" her while my aunt and uncle were out of town.  She felt they were guests and she needed to be a good hostess.  I felt the same thing when my parents came to Texas to "help" me.  I was so looking forward to the help...some relief but when they got here I was all mixed up inside.  In the end, I think I sent mixed signals.  On one hand I will push myself way beyond my limits just so I can be independent.  On the hand I get frustrated that I don't have any help.  It stinks not being able to do for yourself.  I know I am not going to welcome old age with open arms.  I know I have struggled with asking for help in the past.  Part of it is when I did ask for help I got an ear full of why I didn't need help.  So, I crawled back inside and beat myself up again.."see, you really didn't need help", "why did you ask for help? There are worse people off than you..." Then we move to a new city and new church and the last thing you want to do is appear as if you need help, much less ask for it.  Then, the more I needed help the more upset I get that people don't see I need help.  Monday, God showed me that I really do need help and I need to ask for help.  Yuck!  A dear woman from the church asked if she could come over and help and I gladly accepted.  This is what I needed, right?  But then why do I struggle when she gets here?  I wanted to help her help me.  I felt uncomfortable that she was doing things I should be able to do and keep up with.  I was embarrassed. Why is it so difficult to allow people to help us?  Why do we feel we have to act as if we have it all together and under control?

I believe the lesson in this is God showing me if I am going to rely on myself, I'm not going to get very far.  My body and mind is failing (all of ours are).  His isn't!  When all else fails me, including people, He won't.  If I will fully trust Him and rely on Him, He will work everything else out.  There is no other person I would rather trust and rely on, especially since He is in control of everything anyway.  It doesn't make the struggle to surrender and let go any easier.  Thirty some years of relying on myself and doing it myself.  Its an old habit to break.  

So, I start by saying......Hi, my name is Elizabeth and I need help :)  I appear to have it all together but I don't.  I appear to not need help but I do.  I will be weird and uncomfortable if you try to help me and I am sorry.  I understand I have a choice right now. I can either be frustrated all the time because I can't do it by myself anymore or I can learn to rely and trust on God....and learn to ask for help.

At My Rope's End Again

I really don't like it when I get like this.  I'm at a place right now where I feel I am at my rope's end.  The only way I know to work through times like this is to blog. Yet, in the back of my head I hear a small voice saying, "People don't want to hear about it Elizabeth".  So true. But I blog today to vent and get it out in hopes I can feel better and move on with my day.
Today, its a worthless feeling.  An "unimportant" feeling.  I hate this feeling.  You would think by now that I would recognize this feeling as satan and his lies.  But, sometimes its easier to believe the lies in living forms like people around you, than it is to believe and trust the words in the living book, the Bible.  Even though, in your heart, you know the truth.  I wish I could be more candid today as I would like but I won't in my attempt to spare someone else's feelings or to give some situations a chance to work themselves out.
My day started off "normal"... if there is such a thing.  Some mornings I feel better than others and today I woke up feeling "okay", not bad.  I started doing school with the girls and my day took a turn for the worse.  I have a child that can be so strong and determined to do her best one day, and the next day just appear to completely give up.  Tuesday she tested my patience with school and Chris and I talked and agreed on the consequences for her actions.  Wednesday, I had my strong, determined girl back.  Today, she had the attitude of giving up and even as I am telling her to write something in my attempt to help but not do it for her, she refused.  I don't have patience for this, especially when my patience has been eaten up by bacteria.  I am racking my brain to try to understand her and at the same time feeling like a complete failure as a mom and as her teacher.  More consequences were doled out which included being sent to her room to finish school.
I was trying to do the dishes in the sink (one handed with one arm out of service) and my mind is flooded with one person or situation after another and with each one I felt more worthless, more unimportant, completely useless.  Yes, I thought, according to this world's standards I am worthless, unimportant and useless.  My next thought was, "go to the bible and talk to God who made you and will never think you are worthless.
As I write this tears form in my eyes because it wasn't till I just typed those words that I realized a connection between what happened this morning and how I am feeling and God's word.  You see, even though my child made poor choices this morning and frustrated me to no end, I still love her as much as I did the day I knew I was carrying her.  But people are not as kind.  You "mess up" once or they don't agree with something you have said or done and there opinion of you has changed.  The chances of that opinion changing was slim.  As a human race we are very unforgiving.  First impressions are strong and lasting and how people think about you will color how they interpret what you say, do or write.  I think the problem lies in whether we have invested enough in a person to truly know them.  Some people are not easy to get to know and we sometimes don't allow people close enough so they can get to know us.  Either way, if there is an investment there would you be as likely to easily toss it aside?
I think the most important things in life are people, relationships.  Everything else is just "stuff"...it has no meaning in the grand scheme of things.  And yet, we are quicker, as humans, to cling to the "stuff" and throw away the people or relationships.  We will work our whole lives to acquire some "thing" and not spend any time to acquire a relationship.  We will spend an entire lifetime building up our bank account or business or career but aren't willing to invest in the people or relationships in our lives.  People go to heaven.  All else fades away.
Once again I have blogged intending to vent, although feeling extremely limited today since my feelings were about people, some who might read this, and once again God has taken it and shown me something.  All at the same time leaving me with my original feelings.  I am still very hurt by people in my life.  I feel they have failed me. I once again am questioning the definition of a true friend.  But, once again, my eyes are directed upward where things never change and where I am never failed.  No matter what I know where I stand with Him....just as my daughter stand with me.  He may not like my choices but I know He will always love me just as much as He did when He created me.
I know that part of God's big picture in this journey through Lyme is to break me down physically and emotionally, till I completely accept and surrender that all I ever need is Him.  All else will fail me.  All else is unreliable.  But if I would just learn to turn to Him for everything I need, I would never be disappointed again.  So much easier said than done for this woman who has been so strong and independent all her life.