I am sitting here in bed working on stuff for the girls' schooling for next semester....always trying to get ahead but somehow always feel behind.  I'm not done with the little "project" I was working on but there was a nagging voice to blog.  I have avoided blogging in the last couple weeks, more months.  Partly because I knew it wouldn't be positive because I am struggling so badly mentally.  Part of it is I don't feel it serves the same purpose it once did, informing people.  In the last couple months I have felt so alone.  I don't have a midline in my arm limiting my actions but I feel just as bad today as I did this time last year. But I don't feel the prayers, the presence of other peoples hopes. I feel very much alone other than the other three people that live in the same house as I do.  We have found ourselves clinging to each other more in the last several months then ever before. I know this is part of God's plan through all this.  Yet, I yearn to free them of the daily pain, inconvenience and lack of a wife and mother they have to experience.  I think a lot, probably too much, but I'm one of those type A people that analyzes everything (my daddy in me) and by golly if I can figure out why this or that then I can avoid this or that. Unfortunately, its not that easy, another thing not easy for a type A person who looks for things to be black and white, consistent, patterns, etc.  There is comfort, for most people, in routine, habit, consistency. So, this type A person is really struggling with this Lyme disease that is anything but black and white, routine, consistent.

We have past the year mark of when it was diagnosed.  We are approaching the date of being on antibiotics for a year. This blows my mind that I have been on most of my meds for a year.  Feeling the way I do I question whether we are gaining any ground and yet the tests show some progress, its just really slow, which is typical for Chronic Lyme. Its just really wearing on me physically and mentally.  I am split down the middle, feeling thankful for Lyme because of the things God has shown me but feeling just really tired of it all.  

The best way I can put it is I have nothing, absolutely nothing to offer anyone anywhere, even those in my household.  The best way I can try to explain is to picture me out in the desert laying on the hot, dry, ground just trying to survive.  I just try to make it through each day. I no longer can "help" myself. I need taking care of, and this disgusts me.  I asked myself, "what do you really need?" and I felt the response was unrealistic, too much, too high an expectation of anyone.  I am a kid yearning for a mom to take care of me till I am well or a yearning for a friend to come by my side and lift me up and help me back to my feet.  So here I lay between this "need" feeling and being at this place in my life and not liking it and feeling that the answer is unreasonable.  So, I'm in survival mode. I do what I can to get through each day but its having effects on my family that I don't like.  I am starving and need nourishment physically, mentally and spiritually and I am unable to "feed" myself anymore.

Since our house has been decorated for Christmas I have yearned to "host" or entertain.  It is definitely something Chris and I love to do.  Last weekend we had the youth over Friday night for their Christmas party and then the Youth Volunteers over Saturday night for their Christmas party. I knew it was really pushing it. I saw God provide in ways such as the lady that was cleaning our house (a blessing through a lady at church) came one more time for free one last week before these two parties.  I could have never have done it myself.  Its difficult to explain because on one hand it was very taxing on me physically, may be the reason I have been in bed most of this last week, and yet mentally it was invigorating to serve people in this way when I haven't been able to do anything for anyone in the last year.  Sure enough, come Monday I had the "been ran over by an eighteen wheeler 10 times" feeling.  The throat hurts, the lymph nodes swell and hurt, the joints stiffen and hurt...what most people would say, "I'm getting sick".  but I can't put into words how alive I felt while serving others and hearing the youth throw powdered donuts at each other in the front yard.  I had two people thank me for opening our home to the youth and each time it hit me in a weird way.  I thought, "is there another way?" I can't imagine not having them over. In fact, I wish we had them over more and hate that I can't serve Chris more in this way. 

While trying to get ready Saturday night for the Youth Volunteer's dinner I realized something.  Chris and I were butting heads, just not on the same page.  And about half way through the morning after he was pretty frustrated with me and me with him I realized why.  Through our 12+ years of marriage he has learned and gotten used to a wife that was efficient and organized.  Bless his heart.  So, here he is getting something out and thinking he is helping me by being several steps ahead and I'm standing there frustrated because I can't figure out what the heck he is doing.  He was on one recipe and my mind was stuck on the last one I had looked at, unable to think or focus on anything else.  Again, its difficult to explain.  Just know that I don't function like I used to and we are all having to adjust to this.  After years of me one way, Chris had gottent used to that, and now I'm not like that anymore.  I am so much slower and can't organize much of anything anymore and I'm definitely not efficient in anything I do.  Its frustrating for all of us. Those on the outside of our walls do not see this.  The community and church where we live has only seen the "sick" me and do not know the Ms. Efficient and Organized.  I don't think she moved with us to Simonton.  We must have left her in Cypress (sorry, my attempt at humor).

I do not like rationing my energy, particularly at Christmas time.  I've been yearning to hear Christmas music, experience Christmas music, sing Christmas music.  I wish I could just play Christmas music and get lost in it.  I took the girls to a Christmas program last Sunday night at the church Chris and I got married in (yes, the Sunday after both parties. I felt aweful but by golly I was going to go to at least one Christmas concert). The whole time, trip there, concert and drive back, really revealed just how different things are.  I got very anxious driving there...it was dark and I don't see well anymore when its dark. I was nervous that I didn't remember how to get there. God guided the car and made a parking spot for us where I didn't have to walk too much.  The program though was an hour and a half...ugh.  I get nervous that I won't be able to handle the girls and that I will get frustrated easily with them and that I will loose my cool with them and say something I said I would never say to my children.  I have lost all confidence in myself due to the lack of energy, strength, memory, physical stamina, etc.  The girls did well and hung in there. I was glad to expose them to the music. All the way home I was questioning whether I should have taken us after really seeing how I have deteriated from a strong confident person to a weak incompetent person.  Its not a pretty realization.

I've asked myself about asking for help but I am so tired of asking for help.  We've been asking for help for a year.  In trying to work out my needs and feelings I realized that what I needed was a mom or friend to see me through this.  It is so difficult because on the outside I look "normal".  Maddie asked me the other day what normal is. Becka learned in school that a "normal" body temperature of a healthy person (so glad they clarified that) is 98.6.  The girls wanted to take their temperatures and mine.  I was 97.9 (I run low) and Becka was 98.0 and Maddie was 98.6.  So, she wanted to know what "normal" is.  I laughed inside because I don't believe there is "normal" anywhere.  I found myself saying, "normal is what most people do, say, are....the average...that's all".

We saw a new doctor last week.  She is an MD and a natural health doctor (if I have my information correct). She is about an hour and a half away.  We took the whole family (it gets tiring trying to find people to watch the girls all the time. I fear wearing out what help we have) and the drive was breath taking this time of year.  Chris got to go down memory lane a little (literally) and it was neat to hear him share of those childhood memories.  We liked this doctor.  I brought my entire typed out history (it gets old sharing 10-15 years of history, especially when I don't remember most of it).  She is the first doctor to actually sit there in front of us and read it page by page and then actually approach some of what she read.  I wasn't sure at first if she was going to say, "I don't really believe you have Lyme" based off her body language while reading.  I have to say I am  "gun shy" about seeing new doctors because I fear what response they will have. But she did not say those words but immediately began to address some issues. She is concerned about the mitochondria of cells.  She has us doing several tests (things we do at home and mail to a lab) to look at this and hormones and other things. The appointment was full of a lot of information that I don't remember. I kept looking at Chris and asking, "are you getting this because I will forget".  She highly recommended to soak in a hot bath with epsom salt and baking soda because the body will absorb some of the magnesium. She added a med called "T3" that is suppose to partner with the Thyroid med I am taking. I don't remember anything else about the drug and I rely heavily on Chris to remember everything and keep it straight, just like a kid with their mom at a doctor's appointment.  When she started to really talk, the girls were getting antsy and I got frustrated because I couldn't focus on more then one thing at a time.  Its so difficult to explain in words so you know what its like or even get an idea of what is happening in me.  I apologized to the doctor and tried to explain and she moved the girls to a play room around the corner. I didn't care for this because they are out of my sight but I didn't have a choice and being up against a wall because of our current situation medically just frustrates me more.  Basically, this doctor will take in all the test results when she gets them all in (it will take several weeks) and then is supposed to call us and we will go from there.

Meanwhile, the headaches and the head episodes have gotten worse in the last week. Combined with not feeling well it is disconcerting.  Its difficult not to focus on an MRI that never was resolved. I just keep telling myself that its all probably just more symptoms of the Lyme.  

We see the Lyme doctor Monday. I am dreading this as we need to share with her about the neurologist she referred us to that did more harm for me then good.  We feel she needs to know so that hopefully other Lyme patients are referred to him.  She will probably run another set of tests.  She will also probably want to know why we aren't taking ATP that she prescribed after the last CD-57 results.  Not sure what to say there.

I am so glad we are done with school for this semester.  I am looking at us taking the next 3 weeks off.  The girls are excited and I have a list (ha!) of things I want to do with them during this time off.  For some reason, not having the pressure and schedule of school I find I relax more and am less frustrated and kurt with the girls.

Becka had her first little gymnastics competition and earned 3 blue ribbons and 1 white.  She blows me away watching her do gymnastics. We got a piece of paper last week that they want to go ahead and move her up (several in her little group) to be officially level 3 and working out with the girls that are currently competing.  This is exciting but it also means 9 hours at the gym a week instead of 6 and more money.  We have a meeting with two of the coaches Monday to gets some questions answered. I am praying God shows us which way to go.  She definitely has talent in this area and I want to help her grow in this talent but I also want to make sure we balance things, first with finances and with family time.  

I plead with any of you that still read this blog to pray for us as we continue to fight this disease and try to function as a family.  Pray for Chris as he tries to take up the slack of a wife that can't be all there and his ministry with the youth and adults.  Please pray for my girls as they try to grow and learn with mom that isn't all there.  Becka said the other day, "you don't play with us anymore" and it hurt.  It has been heavy on my heart to have her see a counselor.  I fear that she has some anger as a result of growing up with a sick mom.  I'd rather her deal with it now then later.  Maddie remains my happy-go-lucky kiddo.  But its hard on her as she is always talking and always bopping around and Mommy can't keep up with her mentally or physically.  Please pray for our doctors, for our treatment, for decisions that need to be made, directly related to medical and those not directly related. Please pray for strength for me mentally, physically and spiritually as I am at a very dry and tired spot in this process.  I am so tired of everything and am so ready to be functioning and contributing to life.

I fear I will be "benched" for so long that when God does give me the sign to get back into the game it will be difficult to cultivate and be a part of relationships that were hindered during this time.  I hate not being able to do anything, literally.  I am thankful I can pray for people. Thank you God that I still have this ability.   I pray this week finds you focusing, realizing, enjoying the true reason of Christmas.  May you discover something new about Christmas.  Without Christmas there would be no hope or peace.  Christmas is about giving and God gave us the best gift ever! Himself! Forever!  May you see, feel, experience and know this in not only your mind but your heart as well. As dry as I am spiritually, this is what sustains me and holds me in "survival mode".  I have noticed during this Christmas and being "benched" that my ideals are changing.  We put our tree up and I looked at it and thought, "that's silly...trees are for putting presents under. We won't have much under the tree" and then that was quickly replaced as I looked at the ornaments with "no, our tree is about family and memories and we have lots of memories".  Our ideals about gifts, what we do, etc are changing and I like the direction they are going in and where they are focused which wouldn't have happened if I were "well".  It has been interesting because our new ideals are so far from what the worlds ideals are.  Again, I see so much of what God is doing through this time in our lives but its like being on a vacation....you can't wait to go home and sleep in your own bed.  I'm not sure that makes sense.  Thus I think why I haven't blogged because it feels impossible to put into words what is going on in the Saulnier house for those who are still hanging in there with us.  I know my God is still here with me and I can't thank Him enough for my husband and two girls.  I cling to what I do know till I am on the other side of the green journey. Its not easy being green.

Absolutely Incredible!!!!

I had a great nap I just dropped the girls off at church and my body is begging to go back to sleep (that and its cold and rainy outside...perfect napping weather...). I am feeling so "junky" right now but my mind has been processing what happened today and I have to write. 

Nobody, except maybe Chris, will even come close to understanding what happened this morning.  It has left me in AW all day and has had me thanking my Lord as well.  I am blown away and yet, I am a little ashamed that I am blown away, as it might show my lack of faith but I know I had the faith, so I'm not sure why I am so blown away.

All my life I have wanted to be "useful" and this became even more a yearning when I became a Christian, and has increasingly been a "prayer" for me, especially in the last several years.  In the last several months, I have never felt so useless.  But today I am thanking my God for using me and for showing His mighty hands on my life.

The last two weeks I have been more doable then the couple months before it.  Physically, the last couple weeks have not been bad. It has been more of a emotional struggle as we fought through an MRI with a couple doctors but physically they would fall under the "better" days.

Many weeks ago I posted two songs that are my hearts cry at this stage in this journey, Captivate Us and The More I Seek You.  As Chris was preparing his sermon for this morning he decided one day in the car as Captivate Us came on the radio that it would be a great song to be sung and played the day he preached.  He explained it fit what he was supposed to preach on.  I was so excited and like a little school girl I hoped he would allow me, pick me, to sing it, but that thought was quickly reprimanded as I took stock of my physical situation.  In not so many words, I'm "unreliable" right now, not knowing how I will feel from day to day.  I was thrilled when he started talking about me singing it.

There was another day where I was listening to music in the car by myself and it was one of the first times I had heard The More I Seek You.  As I sang the words I remembered what Chris had said he was preaching on and I realized that the picture I saw in my head when I sang the song, matched something he was preaching on...a lady at the feet of Jesus.  I shared with Chris that I thought this song fit his "Sunday" perfectly, maybe even more so than Captivate Us, afraid he wouldn't want to do both or couldn't.  To my surprise he loved the song and agreed that it did fit perfectly.  He acquired the music and began tossing around in his head what other songs the congregation would sing and would that he would include the two songs above.  I was in a tizzy about these two songs because they had become my hearts cry and I so badly wanted to sing both of them, but I felt so strongly I that it wouldn't be right.  The number of Sundays I had been to church were sadly out numbered by the ones I hadn't.  I didn't feel right that all of a sudden I would be at church, and oh, look she's singing two songs.  I also didn't want that much "stage time", if that makes sense. If I could do it from the choir room, where no one could see me, then fine :-)  I knew it would leave Chris in a dither as well, if the Sunday he was preaching came up as one of the Sundays I wasn't in church due to my physical situation.

Chris asked which song I wanted to do.  I went back and forth. I'd pick one and then miss the other one and vice versa, quite silly in fact.  It was finally decided, like maybe 3 weeks ago that I would sing The More I Seek You.  The weird things is, not too long after that decision I found myself at the piano thumbing through the song quite often.  This was after I had tried to dictate it and lost it and had come to the realization that my hands weren't the full problem in me playing piano these last couple years.  My brain wasn't cooperating either.  But I would sit down, now having the music, and found that there was just an 8 measure section that was quite challenging.  I messed around with it for a little bit, and then the next day found myself back at the piano, playing the same section and was surprised that I wasn't starting all over.  Something inside me said to play and sing the song the Sunday Chris preached.  Well, I thought this to be a fine thought but an absolutely ridiculous thought.  I have never played and sung in front of anyone outside my husband and girls, and I have not played seriously in over 2 years, much less played at all in almost a year.  Oh, and who knew what days I would feel well, and which days I wouldn't so the thought of preparing it went out the window.  Are you crazy? I can barely get up most days and do school with the girls.  The laundry doesn't get put away and the house doesn't get cleaned much less a song prepared for church less then 3 weeks away.

I was waiting on Chris to tell me who would be playing piano the Sunday he was preaching and as each day went by and I didn't know who would be accompanying the stronger the feeling got that I was to play and sing.  Miraculously, I found myself at the piano each day for a short time.  It wasn't this scheduled, have to practice, playing and I didn't play for very long.  If you have known me for more then a couple years you know that I have had trouble with my hands.  If I used them for any thing they would hurt, but especially playing the piano.  I would pay dearly the following day if I sat for lengths of time playing my favorite songs.  Playing was my release, my worship, and I thought my gift but I struggled in understanding why it had been taken away.  I enjoyed teaching piano but found after we moved to Simonton that it was taken away as well and before I knew it, I no longer had anything to do with the one thing that made up so much of me.  I didn't get it...okay, still don't unless it was leading up to this morning.

A week and a half ago I was asking Chris if he knew who was accompanying me and he said no.  He also made the comment that I appeared to think I was playing and singing the song.  Yeah, so did the little feeling inside that I kept telling it just couldn't be.  I shared with him that it made me nervous to think there was less then two weeks before his sermon and I would need to meet with this mystery accompanist at least once to run through it, preferably more to be comfortable and I didn't know what my days would be like so in my mind we were running out of possible workable days.  Somewhere in there, after hearing it, though I'm not sure what happened, it was decided that I would play and sing it.  About this time, I also noticed that there was a little time each day at the piano and it wasn't something that had to be forced...it just happened. It was also around this time that I noticed I was retaining what I had practiced through the day before and the day before that.  I was able to play through the song, with the 8 measure section giving me a smaller and smaller problem...but singing it while I played was something else.  It was also noticed about this time, that my hands did not hurt the next day. In fact, my hands didn't hurt anymore from playing then they do from doing anything else.  I found an incredible strength when I sat down to play and yet my hands still had difficulty picking things up, holding on to things, and were their typical weak hands otherwise.

A week and a half ago I decided I really wanted this lady at church that plays the bass to play with me.  I passed it by Chris and I felt really stupid asking her with such short notice...until I found out she was playing for the other song as well.  I worried about what she would think....I'm good at that, but she had played on another song I sang so I gave it a shot and she accepted.  A week ago at church I found myself asking her if she could rehearse that afternoon and to my surprise, again, she accepted.  It would be my first time to rehearse outside the house, with a mic (I loath mics) and have to sing and play at the same time.  The thought scared me to death but I got through it.  We met again Thursday and two other times I went up to the church for a short time to play and try to get used to the piano, the big room and the blasted mic.  No mic, I'm comfortable. Mic in front of my face and my voice shrinks to a mouse as if I am afraid of my own voice.  I am not a singer by trade...at all.  Sometime this last week I asked Chris, kind of jokingly, if I could use the cordless mic that hangs over the ear instead of the big metal one in front of my face.  Because the service wasn't going to be a typical service there was a cordless mic available and he said I could use it.  At this point, I needed to just get comfortable singing with the mic, then with playing and singing period.

The week was challenging mentally as satan worked his sneaky ways so I would feel insecure and question everything.  This time was a little different in that I recognized it more and kept it at bay as best as I could.  As today got closer I anchored myself knowing that anytime Chris preaches we are horribly attacked.  We have had some really weird things happen on times he has preached (like the time I got home and found the front door wide open at the house in Cypress....we never went out the front door and it was minutes before he was to begin preaching...hhhmmmm.) I had begun praying back in September for us, knowing October would be rough and leading up to today and prayed even more, and asked a couple people that don't think I am weird when I mention spiritual warfare, to pray for us, especially since we both would be doing something today...it seemed like a bigger bulls eye on us.

Yesterday, Chris and I went to one of the most beautiful weddings. It was outside and just classy, beautiful, ...there just aren't words.  It felt so good sitting outside..okay, it just felt good getting out, but the Fall  colors and weather was a clincher for me.  It was interrupted though, every time someone came up to me and said, "You look good. You don't look sick." This bothers me in so many ways but it bounced off better yesterday....and today.  You see, my greatest weakness is worrying about what others think and one of my worries when it was looking like I was going to play and sing was that others would see me on the platform, playing and singing, and think I am "healed" and not sick anymore and when in reality each day is still a struggle.  If you could be a fly on the wall inside my house you would see that it is still a struggle for me and my family.  But through the last couple weeks God has worked with me and shown me that I am to be obedient to Him, not worrying about what others think and that He is big enough to take care of things. All I need to focus on is obeying Him.  Oh, so easy to say and verbalize but oh so difficult for me to do that worries tooo much what others think.  I have to trust that He knows what He is doing and that He has it all under control.  He didn't ask me to play, sing, and control what others think.  It has been incredible to see a strength arise this last week that is so unlike me but I would have never imagined this morning.

It became evident again, that this morning was His thing when I went up to the church for one last run in, I mean run through, with the mic.  I took up a couple books of worship songs I used to play.  One song, Be Thou My Vision has been heavily on my mind.  So I took them hoping I would get a minute to play like the old days.  I rehearsed my song for today and it went so smoothly.  I pulled out the books and began playing and the hands stiffened up and my playing went back to dull and lifeless.  It was so evident that God has been the one playing The More I Seek You these last couple weeks.  

Last night going to bed I told Chris that I totally expected not to get any sleep, for the girls to be sick in the morning, that I would feel junky and have a herx, that one of the cars would break down, etc.  I laughed as I then said, "but we are all going to church".  I went to bed last night surprised we hadn't been more attacked yesterday...and yet as I type that I am reminded of what people said yesterday...maybe we were attacked but I was protected and it bounced right off without much of my notice.  Although, that thought was quickly followed by, "I would notice if our front door was wide open though". I dreaded the night before today knowing that my stomach would be in knots....it wasn't.

As I suspected, I had a horrible nights sleep. But my girls were healthy, the cars worked, and I felt pretty good.  I ate breakfast to ward off any excuses satan could use to work against me.  God had made it evident to me in the last week that I was supposed to play and sing this morning in church, even though the thought still scared me to death.

The girls and I had a pretty easy morning getting out of the house (it can be pretty hairy). I was nervous but underneath it was a confidence that was not my own, but a confidence from being obedient, knowing that this morning was His idea, that He gave me what I needed to be there this morning, and that it would be what He wanted it to be.  I continued to pray for His control over my hands, voice, mind, and body.  I rehearsed a little but just felt a confidence, even though I played worse then I had in days,

My husband looked strikingly handsome in his new shirt and tie he got for his birthday from his mom.  The service was incredible, so worshipful.  Chris' sermon was incredible.  He appeared so comfortable and natural as if he has been preaching in big church all his life.  Chris' dad was there this morning as well.  Things went along so smoothly almost as if I wasn't in it at all, but just watching from a distance....someone else was in control and how good that felt.  I knew I was in the picture though, when about three quarters the way through his sermon my heart began to speed up and try to exit my chest.  The hands went clammy and I began to pray that God would control my heart.  Again, other then the heart there was a marked confidence....a, "this isn't my favorite thing to do, I'd rather not be doing this, but I need to out of obedience" feeling.  And because I was secure in Who had orchestrated this morning,  there was a confidence in knowing Who was in control.  Its a fabulous feeling!

Chris prayed and I moved up to the piano.  I don't remember a whole lot other then my hands and legs shook through the entire song and that I made it through.  My hands shook through the entire song!  In college when I would play in front of peers and professors they shook but I horribly messed up.  This morning the only way I can put it is I was not in control of my body, not the shakes and not the playing that came out, nor the voice....nothing.

We were driving to have lunch with Chris' dad and it hit me....I played and sang in church.  I was blown away.  It is something I have pictured doing as I would play and sing worshipfully under the protection of my own roof, but never thought I would do or be able to do on my own.  This morning was not me but my God.  There is this giddy feeling inside as I have been thanking my Lord today for using me.  I have felt so useless these last several months but today I felt used and extremely grateful that He would choose to use me in that way and reveal himself to me in this way and so many ways that just don't come out on paper.  To most it is insignificant and doesn't appear to be much.  Granted, my heavenly Father didn't send me to Africa to  help the poor and hungry but I felt used today.  He didn't use me in a way that effected big changes in government or change anything nationally or anything one might think of as big.  But He used me this morning and to look back at how He did it, His protection, His provision, His hands.  It is incredible!  Its so difficult trying to put it into words to share what He has done. I try to go back and share information to help you understand and yet its a "picture" for very few to see.  It is nothing big to most but to me it is huge for my God to place on my heart to do something completely out of my comfort area and out of my physical strengths, and help me obey, and show me along the way, and to surrender to Him in a way I haven't before, only for Him to use this body, that on its own is nothing, but with Him encompassing it makes it what He needs it to be for His purposes only...I find this incredible!  Thank you God for using me today.  Thank you God that you would even look on me and love me so much as to use me today.  I have been crying out lately that I felt of no use.  Thank you God for showing me that I have not been tossed aside for vultures to feed on, but that you still think of me and think of me enough to use me today.  Thank you for allowing me to feel your hands on my life.

I was helping my girls clean up their rooms (mommy style) and caught eye of the clock and felt an urgency to get them down before tonights activities. And, as if by stroke of midnight, my carriage turned back into a pumpkin and I began to feel bad.  I went down for a nap with a headache and feeling really nauseous...my typical weekend "junky" feeling from the meds. I woke from the nap feeling worse but I have a new skip in my heart and I am grateful for feeling junky.  After dropping the girls off I was driving home and feeling junky and aiming for my bed, I realized that the last two weeks have been "better" days and it was then that I realized how He has sustained me these last two weeks.  Without His sustenance I wouldn't have practiced and been ready.  Without Him I would not have seen and fought against satan's attacks.  Without Him I wouldn't be a giddy little child basking in her Father's embrace right now.  So bring on the junkiness.

This morning pulling out of the driveway, Becka said, "Mommy, isn't this a herx weekend?" I thought about it and back when we first discussed me singing I had looked at the calendar then and  knew that a herx would be due between last weekend and this weekend.  At the time it discouraged me from singing today but somewhere not too long after that I had forgotten about it.  Thanks Lyme and thank you God.  Sometimes not remembering is bliss.  Absolutely incredible!!

Bummed

Our appointment today with Dr. Franklin was cancelled.  They called late this morning and said due to complications with a procedure he had this morning all his afternoon appointments were cancelled.  I'm really bummed.  

We were doing really well conquering things this morning with school and phone calls.  Chris helped me with the girls school and we were done before noon. I was all pumped up to go to this appointment and hopefully get some answers that would put this MRI to rest.  Just not meant to be today.  I have found it difficult to switch gears....its kind of like, "now what do I do?"  I use to be able to switch gears quickly but I just feel lost today.  Our appointment has been rescheduled for Thursday afternoon.  Its the waiting game...though it really doesn't feel like a game because I like games.  Maybe I need to make it a game.

I just keep looking at the clock and feeling like it is going so slow.  I have to say I think I like this time change.  It was a little easier to get up this morning with the sun already up, then when its dark and my body thinks it should still be in bed.

I have noticed, despite the MRI and tad lower CD-57, a different kind of energy.  It still low, but not as bad that I'm begging for a nap.  Don't know if its a lower key schedule and adhering to naps or an actual change in the body.  I am voting for the latter.  However, it could be that I am hydrated more.  Ugh, could actually drive myself crazy trying to figure it out.  

One daughter is off to gymnastics and the other is off to take a nap with me.  I have discovered the secret to a great nap.  One, a face mask across the eyes, blocking out all light even though there are long dark curtains, is essential.  Two, the sweet warm body next to me of someone that resides in my house.  One in particular  will bring her monkey for me to snuggle with as I snuggle with her.  I type this and she just brought me Girlie, the monkey and is climbing up into my bed.  Third, wearing flannel or sweat pants, sweatshirt and snuggle down under flannel sheets with 3 blankets on top. Last, but not least I put the bed buddy in the microwave for a couple minutes and then put it under the sheets with me down by my feet.  Yes, this is the perfect equation for the perfect nap.  Oh, I almost forgot....the box fan in the room needs to be on medium as a white noise to block out all other sounds that will jolt me awake.  This house has more sounds in it.  The nervous system appears to pick each and every one.

So, I am going to take a great nap and let time pass while I soak up some time with my little girl and Girlie :-)....two of my monkeys. 

What Is Your Agenda?

I'm not sure where to start as I am still processing what happened this week.  I don't believe in coincedences and I believe that God has a purpose for everything.  Monday, we had our appointment with Dr. Salvato.  This led to an MRI done that morning. Tuesday the ER nurse calls to say that basically the sinus cavities have liquid in them making it difficult in an MRI to rule out stroke (I would like to think I could rule that out). Wednesday, Dr. Salvato's office calls and just simply says, "It is probably nothing but she wants you to see a Neurologist."  I asked for a referral hoping that a referral from Dr. Salvato would be Lyme sensitive.  Thursday, her office calls with the referral of which I called and was able to get an appointment for that afternoon.  I have to say there was a slight hesitation but the human side dismissed it.

I dropped the girls off with some sweet friends who were so excited to have them (I love that) and Chris and I were on our way.  It felt weird going to a doctor's appointment that wasn't Dr. Salvato and wasn't Lyme related so to say.  It also felt weird to have an MRI that resulted in being referred somewhere.  They have always come back "normal".

This guys office is also off of 59 not too far from Dr. Salvato's office which is good...wouldn't want to spread them out too far :-)  Every person we came in contact with in this office was very sweet and down to earth...a.k.a. they appeared to like their jobs.  As par for Dr. Salvato's office, they hadn't faxed over the MRI report as they said they would. So, Chris was back on the phone to get the report to the office before we saw the doc.  What good would this appointment be if he didn't have the report?  It was the whole reason we were there.

We waited and waited and found myself praying as I usually do but it was different. I found myself praying for protection, spiritually and physically and mentally.  I found this odd and after praying for His protection I shifted and began praying for what I usually do...for clarity of mind for all people involved, for God's spirit to sweep this office and mind would be clear unlike any other time.  I prayed for wisdom and discernment.  But there was a nervousness about me.  For the most part I was calm, or so I thought, but the longer I waited the more this calmness dissolved and I didn't understand why. Chris had checked to see if the MRI report had been faxed and the nurse said it had and she had put it with my chart for the doctor to see.

Chris got up and went to the restroom and wouldn't you know this is when the doctor decides to finally come in.  I knew immediately that something wasn't right. He walked in, looked at me, looked down at the chart, said hello and asked how I was doing as he probably does with every patient (more routine then with any true sincerity) and I said "fine. How are you?" This caught even me by surprise as it apparrently did him as well by the look on his face when he looked up at me and then made a sound equivelent to "whatever".  Then he said, "Do you know Paul?" Excuse me? Now it was my turn to be caught off guard.  I replied, "Paul is my husband's father."  He quickly walked over to this desk and sat down and began to spat off instructions...."I will ask you some short questions and you will answer with short responses and then when we are done I will give you chance to ask quesitons."  It was said with such curtness and no gentleness as if it was my fault I caused him to breach confidentiality.  He began to ask and it began to get tense.  Without Chris I struggle because I don't remember things. Chris walked in the door and I exclaimed, "He is your dad's doctor."  I could see this doctor tense up.  He said nothing to the matter and continued on with his questions. I was quick to look to Chris for some help with remembering some things and this doctor was quick to shut Chris down.  He wouldn't allow Chris to say a word or contribute what so ever.  This frustrated me but near as bad as trying to answer with short answers.  Not knowing what is Lyme and not Lyme it was difficult to answer the questions.  I was in this doctor's office due to increase in headaches, sharp pains over the right ear and a right foot that is turned in.  All this led to an MRI which put me in this man's office.  I tried to explain that I didn't know what was Lyme and not Lyme and he interrupted me and cut me off saying, "You aren't in here for Lyme."  He at one point looked at me and said, "Have you ever been to Connecticut?" I replied, "no" then he said that I couldn't possibly have Lyme.  He also asked if Dr. Salvato is an infectious disease doctor..."no". Then he asked if I had ever seen an infectious disease doctor and I replied, "no because they refuse to see me." It was here that I began to cue in on why I was feeling uneasy.  He asked me if I know of any reported cases in Texas and I replied that I had read that there is at least one reported case of Lyme for each State Park in Texas.  He looked at me weird like what did I know.  He asked if I could quote the source and I said, "No, I can't right off the top of my head"...I'm lucky if I can tell you what I had for breakfast right off the top of my head. He stopped there. By this time I am in tears with frustration, feeling interregated and not helped.  I looked at Chris and asked, "Is this Barbara's doctor" and Chris said, "this is dad's doctor".  Right then and there I had a sudden urge to get up and walk out but the other side said to see this through, don't be rediculous.  We continued through the questions. He asked if he could examine me but with every thing he asked me to do I felt I was being treated as if I was faking it.  Right before he examined me he asked if I knew where the head report was located.  Never being one to be quick on my feet I was surprised that I said, "my head? or the report?" Finally, almost 13 years of training under Chris and I was able to think off the top of my head.  He chuckled and quickly turned on his heels.  He called in his nurse and told her to get Dr. Salvato's office on the phone and get a report of the MRI faxed to him.  I knew he had the report in his hand, but I wasn't about to be the one to "correct" him.  The nurse looked at him and told him he already had the report.  Once again, I felt like I was at an appointment where the doctor had to be reminded of why I was there.  He was doing a neurological work up without even knowing why I was there, not even considering the report and what was on it.  He quickly sifted through his short stack and located it, took 20 seconds to read it and then toss it back on the desk.  

He then sent me off to another room to have an EMG done and Chris stayed behind.  All I could picture was this doctor lecturing Chris on how his wife is faking it, and doesn't have Lyme, etc.  I wanted so badly to get out of there.  Having had an EMG done before I was not looking forward to it.  Here again, I was misled by the ladies niceness and "tricked" as she went through her part.  I had even shared that I had one before and asked if she was going to do the needle in the thumb joint.  She said, "oh, no I don't use needles. I use electrodes."  I thought I was safe. She finished and said the doctor would be in. I asked if I could get dressed and she said no.  Then she said, "do you want me to tell you what he is going to do?" Um, duh, YES!! She then explained that he would come in and do his part..with the needles.  

Chris had come in through part of her part and I was looking at him to discipher what had happened with the doctor. To my surprise he was calm where I was ready to jump off the table and leave.  When the lady left I looked at him and said I wanted to leave. He said he talked with the doctor about his chances of getting parkinsons and about his dad...off the record.  We waited and waited and I dreaded what was to come.  

He came in within 2 minutes was done.  It really wasn't anything..literally...seriously it was as if he was playing "doctor".  His demeanor was different.  He was acting cool. He sat down and was quick to tell me that I have a damaged nerve in my right wrist and preceded to talk intelligently with me giving me the latin word for this, etc.  I couldn't believe this guy.  I asked what was on the MRI and he quickly picked it up and just as quickly tossed it down and said it shows I have headaches. Really? I have had headaches for years and never once have the MRI's come back showing "headaches". He went on to explain that he was concerned about all the meds I am on that I should be in the hospital under all those meds and yet in the next breath looked at me and said he wanted to put me back on Topomax and another migraine med.  He said he wanted me to start wearing a splint at night to help with the damaged nerve and he wanted me back for an EEG and again for a follow up that he couldn't just prescribe these meds and "let me go".  All this was spinning through my head and all I kept coming up with is inconsistencies and stuff that didn't make sense.  

We walked out with the prescription slips, two appointments and a sheet instructing us to get a splint.  I questioned whether we would be doing any of it.  I walked out of the appointment 4 hours later with mixed feelings and questioning everything.  I couldn't tell if it was a good appointment or bad, productive or not.  I had a nagging feeling that I needed a copy of the MRI report.

All that night and the next morning my mind reeled back and forth, annalyzing the appointment and something did not feel right.  I was trying to process what had happened, and where did it leave us and where do we go from here.  I was angry that if an MRI that just says, "headaches" on it and didn't really mean much landed me in an another doctor's office.  I don't care to see doctors. Its not my choice of how to spend my time.  I only went because, for the first time, something on an MRI showed something that got me referred.  Stuff didn't make sense and the more I thought about it the more I needed answers before I could move past it.  I texted Chris and said that I needed to know the name of the doctor that his stop mom went to see that led to her verbally attacking me in my own house on Father's Day.  I had a really strange notion.  He came home for lunch and we talked about it. I could tell he didn't want to call her and I didn't blame him.  He did and we found out that it is the doctor that told her I didn't have Lyme.  So, this guy is used to talking about other people in other people's appointments.  She went through the conversation with Chris and more things surfaced that just spoke "mal practice" to me.  Example: In their conversation she said she didn't know that he did carpal tunnel and he replied that it was the bulk of their practice.  I connect this to why I had an EMG and why I was told I have nerve damage after he barely examined me through the EMG and why I was told to wear splints and come back.  Knowing that this is the same guy anger rushed through me but also relief and understanding and in hind sight I could see the warnings.  Because of who this guy is, everything that happened in his office does not matter.  It is nulled and we still have an MRI with no answers.  

It is so obvious that he is not familiar with Lyme patients or he would know that they have had years and years of tests and would recognize when he isn't performing his full part of the EMG, especially after getting news that there is nerve damage.  He contridicted himself left and right. 

The entire visit with him left me feeling violated, robbed from, made out to be a fool, and stupid.  I feel the only interest this man had was to make more money and support his theories that Lyme doesn't exist. He did not have my best interests or my families at heart and therefore I find him extremely dangerous.

Friday, I ran by Spring ER and obtained a copy of the MRI.  Reading it with Chris over the phone we were misinformed.  There are two findings on the report. One is that yes, the sinus cavities do have liquid in them. And two, that a white spec was found on the right side...the very side where I have the sharp pains.  

All this has left me feeling I can't trust anyone.  In saying that I feel myself turn inward and not want to have anything to do with anyone because, as humans, we all have agendas.  If I don't support the agenda you have then I am going to get an tainted response, a response shadowed by what your agenda is.  What is your agenda?  Right now I know I have my husband and two girls, but more importantly I have my God.  You see, in this world, everyone is fallible because we are human. We all have agendas, some good, some bad.  However, we all view our own agendas as "good" and worth fighting for.  One thing I get out of this week is I see God pulling out things and people that I tend to put my trust in or tend to look for for answers when in reality He is all I can trust and He is the only one I should look to for answers.  One thought has been to get off all meds and trust in Him completely for my healing and restoration.  This scares me as I know scientifically that if I get off all meds I will get worse to the point of no function at all.  But He is bigger then that.  But, in all the years I have prayed for healing, and even now as Chris prays for my healing every night, there is a inner knowing that it isn't His plan. I can't explain it.  Its not a loss of hope.  I know whether I am healed or not, He is with me.  Whether I have Lyme or not does not determine my relationship with Him.  It doesn't change His love for me and never will. To this I cling as all else will fail me at some point at least once.  

I am still processing all this and have not come to terms or grips with it.  It is not settled in my soul yet.  I am still searching for what it is He wants me to get out of it, do with it, etc.  Chris and I question why Dr. Salvato would refer us to a guy like this.  There are a lot of questions but it has reminded me of where I need to look for them and everything else.  I find my husband and girls and me clinging tighter to each other. But I also find that outside the walls of my house I want little to do with, even people, and I know this isn't of God.  I will have to work through this.

At the moment, we have an appointment to see my ENT who we trust greatly.  He is not Lyme literate but we met him the first time we questionable MRI back in 2000 when we were told we had cancer.  We are going to him for a second opinion.  He has always shot it to us straight and won't even come close to it if it is out of his expertise.  Secondly, it has made us realize we are where we are suppose to be with Dr. Salvato.  However, we have received the name of another natural health doctor who does take insurance but is in Conroe...and hour and half away.  With our deductible met we are thinking about seeing her on other things we can do to strengthen the body in this fight against Lyme.

Oh, Friday morning I was awoken at 7:30 by a nurse in Dr. Salvato's office to tell me that the CD-57 was down to 44 (46 last time) and she wants me to start taking ATP...an immune system strengthener.  Makes you think.......

Chris preaches on November 14th and I am also playing and singing.  I find it interesting that I haven't played in over a year, and yet, in the time I'm told I have nerve damage, I am able to play and sing a song.  I feel it is nothing less or more then the grace of God and His purpose for this song that Sunday.  I have no expectations for the day after :-)  Chris and I both know and believe that a lot of what we are experiencing right now is spiritual warfare.  Its like being in an airplane that has no doors and is in trouble. We are hanging on tight and waiting for the landing (aka Monday, November 15th). Please pray that we are found with flying colors through this storm.  

Note: I find myself blogging with a lot of emotion tonight and find it interesting that I have not once typed the doctor's name that we saw this week.  I don't feel it is of my doing.  I also believe this blog may be read by other Lymies and would not want, under any circumstances, to expose them to this doctor.  I would not recommend him to anyone for anything.  If you have a concern with who he is please feel free to email me or comment.  

Is There Anything Up There?

We had our appointment Monday morning. We left with mixed feelings.  Sometimes I feel we are told what they think we want to hear and then when we leave we are feeling a little ________. Not sure what the feeling is.  This was definitely one of those times.  I will say this: She does sit and take her time with us for the most part.  She is fairly patient with our numerous questions and though she appears ready to move on to the next patient, I do feel she is fair with her time. I just don't feel we get the depth and with the inconsistencies in communication I often lack trust in my care.  However, this doctor has more then 20 years of experience in treating Lyme and she is all I currently have.  I would love to go back to the natural health doctor but finances just don't allow for that at this time.
We went to this appointment feeling that the last 5 weeks there have been more "rough" days then "okay days".  Rough days are often characterized by being in bed for the majority, if not all, of the day.  It is also characterized by our typical daily routine interrupted because I am not capable.  Though I don't have "terrific" days as far as how I feel, a better day is one where I can get through the day without bed and routine interrupted.  "Okay" days are still marked with sluggishness and in the last couple months, some pain.
Chris and I were sitting in the exam room waiting for the doc when I shared with Chris that I thought I felt better when I was on the IV.  I felt this was a ludicrous idea but then Chris pointed out that I was getting a full bag of fluids each day.  This had never crossed my mind, not that much crosses it anymore anyway.  I was also better at drinking more water because I needed to to get other stuff down :-)  The doc came in and we approached her about our first two concerns.  I don't feel I am eliminating like I should and that we have had more bad then good days.  Chris has tried to get me an over the counter "aid" but my experience in the past with those has sent me way to the other extreme and I am really wanting my body to handle it naturally....unfortunately, I putting a lot of unnatural chemicals into it so this may be an inappropriate expectation at this point.  She recommended taking Cenocot to help things along. As bad as I feel I am willing to try something now.  I shared with her my observation and Chris' point about the water and she agreed. She suggested drinking a bottle of gatorade a day (I don't like gatorade).  I mentioned that I usually just drink water and she said it wasn't enough to sustain me that the sodium in gatorade opens up the veins/vessels and aids in better "something".
We moved on to another on of our concerns... the headaches and the sharp pain over the right ear.  The last time we saw her she gave me a ten day supply of an allergy medicine.  It didn't do anything that I am aware of.  She had looked at my ears and said they weren't infected but "sunken in" or something like that.  This last appointment, she didn't look at my ears, though they have been bothering me more then had before the last visit.  She mentioned possibly doing an MRI. Then we moved on to my observation that my right foot is turned in. When I sit down the right foot turns to the left and lays on its outer side.  I asked her if it was odd that most of my symptoms are active prominently on the right side. She agreed that it is odd and not typical. I shared that with the foot turned in no wonder the right side of the body isn't happy.  Feeling like I was complaining and feeling self conscious about the number of symptoms we were talking about I told her that I didn't know what fell under the umbrella of Lyme anymore and therefore, what to be or not be concerned about.  She did say that Lyme could be causing the foot turned in though it would be rare.  At that point I asked if it wouldn't be a bad idea, with deductibles met, that we go ahead and do the MRI.  She said we could go downstairs and do it that morning and have results the next day.
She ordered more blood work and depending on how that comes out, will determine if she does any more tweaking and adjusting, though she hasn't in the past.  She still appears not satisfied with the CD-57 level and it "really needs to be 100-120s" this next time.  We'll see.  I am more interested in the routine blood work showing kidney and liver stuff due to the lack of elimination.  I am looking forward to trying the Cenocot and added fluids to see how it effects how I feel and am hoping it helps me have better days.  Often times its the smallest and simplest things that can make the biggest impact.

Monday afternoon some time during nap I received a message from "Denise" at the ER.  Its pretty bad when you have started building relationships with the staff in an ER.  Makes me think of Tim the Toolman on Home Improvement. I really wasn't expecting anything outside of "normal" and with results that fast I figured, "yup, another normal".  Most people wouldn't understand this but if you are familiar with the last 10-15 years of my life you know thats all we heard and yet the symptoms continued to get worse. So, its difficult to be having symptoms and no answers and you cringe to hear "normal" because you feel anything but normal, as if normal exists anymore for anyone.
I called the ER back this morning and was surprised to hear that the MRI showed Acute Chronic Sinusitis or Chronic Acute Sinusitis...don't remember the order of the words...just the words and that alone is a feat.  She explained that this basically means that there is fluid in the sinus cavities.  We are being referred to a neurologist (I thought this was weird...why not an ENT specialist) due to the concern that they can't see if there has been any type of stroke due to the sinus cavities being full.  Again, for most people they might "freak out" over this.  For me, there is peace and a direction to go in and possibly and answer to the headaches, sharp pains above the right ear, and turned in foot.  Usually, if there is an answer, there is another answer that may bring you relief from these symptoms that make life a challenge right now.  I am glad we pushed for the MRI.  It was interesting because the nurse said, "well you are already on antibiotics for sinusitis" and I replied, "the 3 antibiotics that I am on and have been on since March are for Lyme, not sinusitis"....."oh..." was all I heard after that.  Makes me laugh and wonder.  If it is a sinus infection what will they treat it with? A fourth antibiotic? If they change one of the antibiotics I'm on they would have to change the "family" it comes from to make a difference and then you are altering the Lyme treatment.  Makes me ponder.
We know two neurologists. The most current is the one convinced I have a muscle disorder.  She was thorough and spend a lot of time with us and determined.  I have thought a lot about her several days before yesterday.  I would love to go back to her and share with her about the Lyme so that if she has future patients that fit my situation she might look to Lyme and they would be treated sooner.  However, she does not take our insurance.  The other neurologist was the one that helped me back before the girls were born when I was fighting migraines.  The last time I saw her, I had gone in to ask about MS, looking for an answer to my debilitating symptoms that continued to get worse, and MS fit most of my symptoms.  She wouldn't even listen and consider it or was open to discuss things further....literally it was a brick wall smacked into by a fat ego.  So, not incredibly anxious to back to her...though I would love for her to hear about Lyme, I don't think she would be open to it...it would be unproductive and ineffective.  We will be getting a referral from our Lyme doc and then praying over where God wants us to go.  The advantage to seeing the referral is that they will most likely be Lyme literate and therefore we won't hopefully have to go through the questions and explaining about Lyme.  I do want to jump on this quick as to hopefully find some relief from the head.  I had mentioned to Chris that one thought I had was that it could be sinus related since my headaches were worse after a nap (laying down) then if I was up most the day. This baffled me though because, though everyone is really suffering right now with the seasonal allergies (my poor husband included) I really didn't think I was.  I have some drainage down the back of my throat but my throat isn't sore, I rarely blow my nose, and when I do I rarely get anything.  Being on antibiotics for the amount of time I have been on them and the amount time I will be on them is going to pose some interesting questions and situations.
Oh, with all the challenges I have had with my mind I comically made the comment Monday before the MRI that we will officially know if anything is upstairs or not.  Just for the record, Chris sat by the technician the entire time and said that he saw a brain, so I am good :-)
Today was another challenging day with school and the girls and things not going right no matter how hard I tried.  It was another day where I just wanted to quit and I questioned everything. And yet I sit here now in peace and I think it has a lot to do with the preparation of a song for the Sunday Chris preaches.  You see, I haven't played piano seriously for over a year and a half and I can count on one finger the number of times I have touched the piano since we moved to this house in February.  What was once thought to be hands not working I discover was more a mind that wouldn't work with two hands that were deteriorating.  Two of my hearts cry songs are being done the Sunday Chris preaches.  He assigned one to me.  A while back I tried to dictate the song and my mind (and computer) wouldn't cooperate.  Chris purchased the sheet music to have, and his youth have begun singing it.  Not hearing of who would accompany me, I found myself  sitting down at the piano and trying to play it.  It is a simple song with not a whole lot to the piano accompaniment part but I still didn't expect I would be able to play it.  But something inside wouldn't give up after I went back the next day and hadn't forgotten what I had played the day before. It wasn't like starting over.  There was a peace and "knowing" and gentle nudge that said "I want you to play and sing this" which was quickly followed by, "are you crazy God? I have never played AND sung before together in front of people, much less at church and on a Sunday Chris is preaching! (as if He didn't know this and hadn't made this connection). I continued to go back and practice it and it has been a great time of worship for me each day.  My hands don't hurt any worse then they would from doing anything else and I am remembering, retaining what I have worked on.  Having still not heard who would accompany that Sunday, I continued to practice a little each day and have been amazed at what has developed.  Chris has made the decision that I will play and sing this song the Sunday he preaches.  Satan has already begun his attack and if I think too hard about doing this I begin to freak out a tad but then I sit down and play and sing and its as if God is saying, "see, you can do it because I'm doing it through you."  I know satan will continue to work his stuff right up to the first notes I play that morning but if this is God's doing then it will be what He wants it to be.  I truly feel His hands on mine and it has been truly amazing and incredible.  I do worry (satan creeping in) about a lot of things and one of them being what others will think (always been the hole in my wall and gate....for those who attend our church you know what I am talking about).  I have a difficult time as it is for people to understand just how much of a challenge it is to do everyday life.  What will they think if they see me playing and singing?  I'll never get them to understand.  But I have to remind myself that its not my job to "make" them understand or to worry about what will be.  Rest and Rely on the Hands that are in charge.  So much easier said then done for this Lymie, particularly after days like today, but not after playing and singing to my God.  Now if I could just figure out a way to....
Please continue to pray for direction, God's healing on God's time, and for Chris as he prepares to preach November 14th.  Please continue to pray for the girls as they are growing up with a sick momma who doesn't always think clearly and keep up with them (physically or mentally).  Please pray for the wisdom and discernment for all those who come in contact with us (both medically and friends and family).  Please pray that treatment is where God wants it to be and that I will continue to learn to rest and rely in His hands, the rough days and the okay days.

Come To The Water

Thought I would blog about what is going on on the outside as well as on the inside.  The days continue to be challenging and the more they are challenging the more it is challenging on the inside.  I don't do well with long periods of pain and between headaches and muscle cramps, joint stiffness and leg tenderness I am hurting somewhere it seems at all times.  The headaches have been pretty debilitating this last week.  By the end of the day the episodes of sharp pain above the right ear really wear on me.  As usual, coming up on an appointment, we have our questions we hope to get answers to.  One problem we have is that the last time we had an appointment they got up in arms about the shoulder pain (after blowing it off the appointment before that) and said they were calling Dr. Riley's office to get copies of MRI's done.  We never did hear back from them and my intution (which is rarely wrong) said to contact Dr. Riley's office and get them anyway...including the xray films.  Dr. Riley's office claims they never heard from Dr. Salvato's office.  Very interesting.  Leaves me feeling really insecure in my medical care.  Ah, this too I must deliver to God to handle.

This week has been exceptionally difficult not only physically but extremely difficult emotionally.  I tend to think of valley's as beautiful but this has been anything but.  A couple weeks ago my father brought up the depression topic and I very confidently said I wasn't.  Probably not 2 minutes after that conversation things got rough (almost as if satan laughed and said, "we see about that").  We got back from our wonderful getaway and things got rough.  I'm feeling so run down again I need another getaway.  While away I was so drawn to the water.  

I don't know what it is about water and if it the same for others or different for others.  But all I wanted to do was stay on the beach and listen to the water till I am free (in remission) from Lyme.  Obviously, not very feasible without extreme consequences.  :0

So I am processing in my mind (always...its never quiet...no, I don't hear voices...it's just always going...there was a time back in April and May where it was quiet....ah, silence) how can I get "water" at home?  I have a counseling session this last Monday and after Thursday where I fell apart and Friday, learning about a friend who passed away, and being in bed all weekend I was really ready to talk to someone where I didn't have to worry about what they thought.  After balling practically the entire hour she told me to go to my happy place.  This is a place we established 3 years ago.  We haven't "gone there" in I don't know how long (thanks to my memory) but to hear her say those words was like ointment on an open wound...soothing.  She asked me if I remember where it is. Oh yes!  Why hadn't I thought of this before?

As a kid I used to go to camp each summer.  It was a bible camp. I don't remember the name of it. But I loved it there.  I thought it was in Wetmore, Colorado but now I can't find Wetmore on a map.  This place had nothing on the camps the youth go to today.  It had horses (right up my alley) and fishing.  That's about it.  The boys dorm was on one side and the girls on the other with a meeting room (small) in the middle and the dining hall behind that.  There are some great memories (what I can remember) there.  One of the things that stands out to me was a bubbling brook, in the woods along a hiking trail that we took to and back to the lake.  The water was cold and crisp and we were told that is was fresh and drinkable.  I don't know why but I remember a rusty metal object in the middle of the brook.  But I remember the sound of it more, and I remember the cold and refreshing water in our hands.  I remember how the sunlight would peek in between the tall pine trees....mostly shake with clusters of bright, warm sunlight.

As I close my eyes and try to go to my "happy place" I find it difficult to stay there.  My mind kept drawing me away to other thoughts, any thoughts, piddly thoughts and I wanted to stay on the bank of this bubbly brook.  The brief moments I was there I felt my soul crying, "quiet, peace, water. I want quiet, peace and water."  Oh, how my soul yearns for these.  I'm processing this on the way home...I have an hour drive.  The last at least 3 times I have gone to see my counselor I have set my ipod to repeat through 2 songs, sometimes 3.  They are the 3 songs I listed in an earlier blog when I do church in bed.  One of the songs I'm supposed to sing in church the Sunday Chris preaches.  These songs are my hearts cry!  As I am singing through them, over and over and over I'm driving through countryside.  There is an area where I turn a sharp corner and it straightens to reveal open pastures on both sides of me.  It is here that I have encountered a crop dusting plane.  The first time I saw it sweeping down and then back up, and then over the road right behind my car, my breath was taken away with the rumbling sound of a single engine plane.  So much so that I crave to see it again every time I drive through this spot.  I was so blessed to see it, though in the distance, this last visit.  There is something so freeing when I see it.  I can't explain what it is but it is soothing for the soul.

(picture in no way does the experience justice but there is only so much you can do while you are driving :-)   )

It was during this drive home that I realized something.  I had felt God saying, "come to the water".....I realized this morning that its one of Maddie's memory verses...she can quote it to you verse and address, but I can only quote the verse...."Come to me, all those who are weary and heavy-laden, and I will give you rest".  I know that God often refers to Himself and His word as being "water".  So, here is this "water" theme, uh, more message, being played out in my life.  Chris is preaching on Luke 7 about the woman weeping and washing Jesus' feet with her tears. Oh, wow!  The picture this takes on right now!  Basically, we should be so captivated by Jesus and His love and our salvation that out of that flows our service and life.  One of the songs I sing is Captivate Us by Watermark.  I originally wanted to sing it the Sunday Chris preaches. It will be sung by someone else.  But it is one of the two songs I listen to over and over and over and my heart cries out the words.  So, I'm singing them in the car, driving and God starts showing me how my heart's cry to Him is being answered.  The words are:

Your face is beautiful

And Your eyes are like the stars.

Your gentle hands have healing

There inside the scars.

Your loving arms they draw me near

And You smile it brings me peace.

Draw me closer oh my Lord,

Draw me closer Lord to thee.

And captivate us, Lord Jesus

Set our eyes on You.

Devastate us, with your presence, falling down.

And rushing River, 

Draw us nearer.

Holy fountain consume us with you.

Captivate us, Lord Jesus, with You.

Your voice is powerful,

And Your words are radiant bright.

In Your breath and shadow,

I will come close and abide.

You whisper love and life divine,

And your fellowship is free

Draw me closer, oh my Lord.

Draw me closer Lord to thee.

And captivate us, Lord Jesus

Set our eyes on You.

Devastate us, with your presence, falling down.

And rushing River, draw us nearer.

Holy fountain consume us with You.

Captivate us, Lord Jesus, with You.

And let everything be lost in the shadow,

Of the light of Your face.

And let every chain,

Be broken from me,

As I'm bound in Your grace.

For Your yoke is easy,

Your burden is light.

Your full of wisdom, power and might,

And every eye, will see You.

Captivate us, Lord Jesus,

Set our eyes on You.

Devastate us, with your presence, falling down.

And rushing river, draw us nearer,

Holy fountain consume us with You.

Captivate us, Lord Jesus, with You.

As this is coming together the other song cycles around and this is the one that decided I would sing that Sunday.  I wish I could sing both of them but I don't want that much "limelight" (no pun intended) especially since I am not there every Sunday....I don't want to all of sudden be there and, oh, by the way she is singing all the songs.  Now, if I were singing them from the choir rehearsal hall and it was being piped out to the sanctuary that might be one thing but I don't like the attention.  Again, I'd rather show up to church invisible or clear (Chris calls "clear" a color) and worship my Lord. So, here I am singing through the second song and as I am singing the simple words I realize that my hearts cry is being answered again.  "The More I Seek You" sung by Kari Jobe:

The more I seek You

The more I find You

The more I find You

The more I love You

I want to sit at your feet

Drink from the cup in your hand

Lay back against you and breathe

Feel your heartbeat

This love is so deep

Its more than I can stand

I melt in your peace

Its overwhelming

It sings through it several times.  There's the picture again, only instead of the girl in the bible weeping and washing Jesus' feet with her hair, I have always pictured me at Jesus' feet, in awe, where nothing else in the world matters, and oh, the comfort that is felt being that close to Him that I can feel His heartbeat.   Even as I write tonight there are connections being made.  

I feel God has been calling me to Him. He is my water, His word is my water and my soul thirsts for Him and when I seek Him I will find Him and He is all I need.  This is what I get, but this is so difficult to do. I got excited as I was driving home and making these connections (aka "listening") and thought, "you know, I want to go home and look up every verse that has to do with water".  Has it happened? No.  I do find it interesting that since Monday, I once again wound up in bed all day yesterday.  I though it was from doing to much Monday with Chris leaving town....but maybe not.  I don't know.  I don't put it past satan, and I also know thats how this disease works....it doesn't take much to knock me down.  I don't have a nap in the afternoon and I am dead and not good for anything the rest of the day and possibly the next.  How easily the world takes our attention away.  

We joke about how with either girls, but particularly more with one then the other, they are distracted and Chris and I will look at each other and say, "squirrel, squirrel, squirrel" and laugh.  Hello?  I am just the same.  

Oh how I wish I was this bubbly person, happy all the time, you would never know I was sick type of person.  I wish I didn't struggle with my current situation but was at peace with it and had a quiet heart before God about it.  I was this person several months ago and then August hit and something happened.  I don't know what, except maybe new expectations felt by others but mostly put on myself.  Maybe because I don't have an IV in the arm I have a difficult time remembering that I am not well, and so do others.  If left to my own devices and not tied down, I will self destruct if I'm not careful.  Thus, why I said months ago that with freedom comes responsibility.  Sometimes I think it would be easier to not have the freedom....but then when I am there I'm begging to be free again.  Good think God isn't ever tired out.

All I can say is I am learning.  I feel this is a time where God is working on a really stubborn layer and His chiseling is painful. But I would rather have the chiseling and His hand on my life then for Him to not be involved with my life at all.  Doing life under a lyme umbrella is difficult.  Whats on the other side of this disease must be beautiful for Him to be working on me so hard.  As a friend emailed me after my last blog, "Do you want to be tupperware or fine china"....oh fine china please to be used at the Lords banquet table.  Oh to be of use for Him.  That's my hearts cry.