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.