Some Answers

This morning we had a follow up appointment with the surgeon who took out the gallbladder.  He liked the way the incisions looked and gave us permission to pick at the glue over them....uh, no thanks (he said some do).  I was surprised to be asked if I am still taking 2 or more naps each day.  Um, no but would like to.  I might get one on non-gymnastic days but any more then that.  If there are other people at the house besides the people who live in this house, I can't sleep.  I guess I'm in hyper alert in hostess mode (not that I'm a good hostess in my condition) in case someone needs something (as if I can help anyone).  Overall, the appointment was short and went well and doesn't foresee there being any problems down the road....at least those that are not lyme green :)

I am very sore, particularly the belly bottom and the top incision.  I have been taking advil when it gets to a certain point (mainly when it gets to a point I half to lie down).  Yesterday, I reached to the back seat to help Becka with her seat (which was a no no for the midline and my incisions) and it had me hurting pretty good yesterday. I have also noticed what almost feels like a body really fighting to stay afloat.  I was kicking myself for not being up sooner and doing more sooner but then I reminded myself that I didn't go into this surgery where most people do as I remember my last CD-57 being 18.  I have a pretty suppressed immune system fighting to bounce back with 4 new incisions and a missing body part.  I have noticed a sore throat and that very well known feeling that I am run down.  All to familiar from before the Lyme diagnosis.  The body is fighting, and fighting it does well.

Its difficult though, to "take it easy".  I am so tired of taking it easy and being down.  Chris leaves Monday morning to be gone all week at youth camp and my silly little half functioning mind goes into over drive as it starts thinking of things "I could do" while he is gone.  And, then, I have to stop and remind my half functioning mind that the last time I checked I still had Lyme and, oh, by the way, you just had surgery and aren't even up to where you were before the surger which isn't even close to 100%. So, um, back off.  

On our way home I asked Chris what I should do about Dr. Salvato.  I had sent her an email last Sunday night and didn't hear anything after being told this was the ideal way to communicate with her since calls into the office have always been met with a brick wall with no window. :)  I have been trying to be patient all week as we counted down to Saturday, our last IV dose, even though there is very little that is patient in this body.  Yesterday, I sent another little email verifying she received the first one, wondering if the first had accidently been deleted or something.  Sounds pathetic as I type this but calling the office has never gotten us anywhere.....until today.  

So, I asked Chris what I should do because at this point my brain is all combobbled trying to figure out what to do next.  I have prayed all week, trying not to manipulate the situation into what I think I need, especially since Chris will be out of town all next week.  I want God's plan, not mine so I am constantly evaluating my motives.  Chris asked for the number. Uh oh.  Now I'm worried about how he is going to get it done.  He calls the office and I begin praying for God to over take my husband and the doctor's office.

With each passing second I am so impressed with my husband as he very calmly asked to speak to Dr. Salvato or one of her nurses.  The lady, as she has done in the past and we have fallen for in the past, asked if they call him back. He very nicely stated that in the past we have never been called back.  At that point he is put on hold.  I continue to pray.  After about 15-20 minutes of a combination of being on hold and talking to people, we received the answers we were looking for.  Dr. Salvato has switched me to the oral medication called Ceftin (a cephalosporin medication like the 2 IV meds we were on) and the midline is to be pulled.  Chris inquired about taking the Ceftin in addition to the two other antibiotics and he was told in place of.  Knowing that who he was talking to wasn't Dr. Salvato or her nurse we are skeptical about this and have personally decided we will take all three till we see her August 16th and get more information.  Keep in mind that each antibiotic is from a different family of antibiotics.  Each family affects different forms of the bacteria we are fighting.  Because they are in different families they are less likely to interfere with each other. 

I called Quality Infusion to see about getting the midline pulled and at first they talked about coming in this afternoon but I explained I had a 1/2 dose left to do tomorrow. Since they aren't technically "open" on the weekends I was told to come in Monday morning and they would pull it.  The head nurse said she would call the doctors office to see if labs were needed to be done and she would call me back.  Chris posed the question of why not skipping the 1/2 dose and getting it pulled today instead of hasseling with it Monday morning.  I didn't like the idea because I don't want to waste any dose but the midline started really bothering me Wednesday and that combined with how it looked Tuesday at the dressing change convinced me it would be okay to skip the 1/2 dose, and probably best not to wait till Monday.  Basically, Tuesday when I went in for my dressing change, they didn't like the way it looked and would have pulled it if it weren't for the fact that it wasn't bothering me.  It had a red ring around where it goes into my arm and a scab under the skin.  It wasn't till  the day before yesterday that it noticeably was bothering me. I called the head nurse back and she had talked to the doctor's office and no labs were needed and that she would drive out to the house to pull it tomorrow.  I asked her if, in light of how it looked and that it had started bothering me, we couldn't go ahead and do it today.  She said she agreed about how it looked but that we needed to finish the 1/2 dose and she would come out to the house.  I hate for them to make a trip to the house.  For this particular nurse, I know she lives in Pearland which is a good hour and a half away from my house. I asked her if I could meet her at the office especially since Becka had gymnastics (though Chris was going to take her) and she agreed to meet her half way at the office.  Later this afternoon another one of the nurses called and said she would meet me instead so the head nurse wouldn't have to.  Chris and I have talked about when the IV was done, treating the nurses (4 of them) to something.  One had joked about liking Ihop and their crepes when I mentioned going to get some lunch one day.  They have been so good to us and have supported us in anyway they could.  I want to do something for them though I know it won't even come close to blessing them as they have blessed us.

Freedom.....its a funny thing.  I thought I would be bouncing off the wall with excitement.  I am excited to have the use of both arms and hands again after 4 months of IV's.  The timing couldn't be better (God's always is better) with Chris going out of town next week.  I have worried about my patience level with the girls and it just being us 24/7 next week.  I know what it has been and I wanted to be sure I scheduled something to give us some "breaks". But having the midline out and not having to worry about showers, mixing and administering the IV, and the girls baths, and cooking, and etc., I think will help tremendously.  We have been graciously scheduled for some meals and some help next week and between that and no midline I feel at peace that we will make it through the week without Mr. Grumpy arriving and causing frowns.

Please keep us in your prayers. Another Lyme test and CD-57 was run Tuesday at the dressing change and we are waiting on those results. Please  pray for God's numbers. Please pray for Chris and all the youth going to camp that lives are kept safe and that they are changed.  Pray for Chris as he leaves, that he will have clarity of mind and what God wants to do through him.  Please pray for the girls and I as he is away, that we are safe and "happy" (aka no grumpiness) and everything runs smoothly here at the house. Please pray as I am getting off one antibiotic and am beginning another.  Please pray for showers of blessings to come upon all those that have helped us and continue to help us.  

Is it possible?

I am sitting watching Becka do gymnastics, listening to my music and beeming with pride for my oldest who never ceases to amaze me with her driven, motivated personality. There is a girl on her team who has been Becka some attitude, calling her names and being "mean" like kids can do. The first Becka told me about it, the human mother in me wanted to strangle the little girl. I sat on it, contemplating what makes kids (and adults) act such ways. I exained to Becka that I never see this little girls mom, just a nanny and suggested that maybe the little girl was acting out of loneliness. When this girl continued to call Becka names I encouraged he to tell the little, "I'm sorry you feel that way but I still love you." we rehearsed it over and over so she would feel more comfortable responding. I didn't hear much about the meanness after that till the last couple weeks. Last night Maddie did something she very evidently learned from Becka and Becka watched Maddie get in trouble for it and Becka's hands went up to her mouth. When I tucked her in we talked about how our words and actions effect people around us and how Maddie may have never done it if she hadn't witnessed it from Becka. Becka then brought up this little girl and how she and all the girls are always nice to her so how did she learn to be mean. I tried to exlain the possibilities and I encouraged Becka to "model" love to her and maybe she will pick it up and be nicer. These lessons are so difficult for kids, especially when the adults don't quite "model" these things.
I was sitting there, watching Becka's team workout and the human, protective mom in me wants to scowl at this little girl who has been "mean" to my child. And then it hit me! What if the reason she is mean to Becka is because she is jealous of Becka whose mom is there, face glued to the window almost every work out, cheering her on?  This is a child where I have only seen mom once since we joined this gym. A nanny drops her off and then picks her up.  The thing is, its not like the other girls' moms are there also. Out of 6 girls on the team, I am the most consistent in staying and actually watching.  There was one other mom who used to stay but has 2 other young kiddos and is preoccupied with them the entire time. Her work schedule has required her to also now have a babysitter bring her daughter to gymnastics.  I am the only parent glued to the window watching.  I am probably a freak but I love watching my girls at their individual activities.  It is just so therapeutic and energizing.  Even if I have Maddie with me, which I do most of the time, we are sitting right by the window and she is usually busy playing with something.
So I'm sitting here with this "a ha" moment from God and I'm watching the girls.  I watched as their coach was helping this little girl with a bar skill and it looked as if this little girl was crying out of frustration.  It was then that I realized that I have enough love to be a cheerleader for each child on Becka's team, and most particularly this young girl who hasn't been very nice Becka.  Is it possible that all she needs is a little love?  As I 'm thinking this, she walked up to the window and looked at me, looked down at my arm with the IV and pointed to it.  She was the first one to walk up to not to long after I got the midline and boldly asked me what it was.  I was caught off guard and tried to simply say its called an IV and its how I get my medicine.  With that she walked off.  So, her pointing to it today wasn't like she just noticed it.  She has looked at it several times.  I noticed her eyes were red and puffy and I was then certain she had been crying and my heart ached for this little girl and I knew what I needed to do from here on out.
On our way home from gymnastics I shared with Becka my "a ha" moment.  She got very emotional about the situation and frustrated.  I shared with her that we needed to love her by being nice no matter how she treats us. I explained my internal struggle of being a human mom who wants to protect my daughter and not be nice but that I couldn't do that.  I explained that I felt this little girl was struggling with something and that we would love her through whatever it was going on in her life.  Becka was frustrated with the fact that she has been nothing but nice and this little girl still treats her unkindly.  It reminded me of a situation Chris and I have been facing for the last several months with someone in our church who has not treated us nicely, but went out of their way to hug on and be sweet to our girls but then ignore us and not make eye contact, or they spoke very sternly.  I was afraid in our conversations on how to deal with this situation that we had not modeled for our girls how to handle situations like this very well as we have expressed our frustration and hurt to each other, but we have also bathed this person in prayer and have continued to be nice to them even though its not recipricated.  Becka knew who I was talking about as she remembered the Sunday she noticed this person had said hi to her and Maddie but had said nothing to me.  She asked me that Sunday why this person hadn't said hi or even looked at me.  Its difficult! It so difficult to know she is dealing with this at the age of 6 and will continue to deal with it till God calls her home.  But we talked about how this is part of life and its part of the fact that there isn't a single person on this earth who isn't hurting or struggling with something.  Some people's struggles are more evident then others.    I shared with her that God didn't command us to love only those who love us back and that its difficult to love those that aren't nice.  We talked about how God wants us to love others to show them His love. We also talked about how we are all human, and none of us are perfect and so people make mistakes and sometimes our mistakes hurt others.  Wow!  What a big lesson for a little girl and her mommy.  You gotta love it when you learn something in the midst of teaching your own children.
That night Becka prayed for this little girl with her daddy on her own accord.  The next night she and mommy prayed for this little girl.  I pray for her when I think of her.
Yesterday, I got to be glued to the window with my headphones on, watching the girls work out.  There were 4 of them and I have to say it was there best work out ever.  Anytime this little girl looked over at her I gave her a thumbs up, or a smile, or some facial expression that showed I was on her side.  I did notice that she doesn't sit with the other girls when they actually get a moment to sit.  But I also noticed that the other girls were encouraging her and cheering for her as well.  There was a big difference in this little girls face yesterday and in my heart.  On our way home I asked Becka how things were with this little girl today, hoping she had noticed the change.  She said that the little girl was nice to her today. We vowed to keep praying for her.  I noticed that my anger and hurt was replaced with love and a determination to be Head Team Cheerleader!  Let me tell you, it feels so much better then the anger and hurt.  It nothing I did.  Its all God working through hearts, especially the heart of a sweet, tender hearted 6 year old.

Rainy Days and Mondays

Thats what today is here in Simonton. I like rainy days especially if there is rolling thunder involved. No thunder today but a nice steady rain.

For most people this type of day causes dreary moods and I wouldn't say it causes me dreary moods but I do feel so out of sorts today. Unsettled. I decided Saturday that I wouldn't take any more pain meds starting today.  Maybe its a withdrawl from them I don't know. I just feel out of sorts.  I don't feel well enough to be a part of the life going on around me but not yucky enough to attach myself to my bed all day.  I had high hopes (problem number one) of feeling so much better then I do by today.  I almost feel like I'm catching a cold...that kind of yucky, run down feeling. I know some of it has to be not having a full diet going again.  My stomach has not been happy since we got home.  If its not nauseated then its growling at me meanly.  Nothing really sounds good and I am so fearful of eating anything "real".  Yogurt, applesauce and oatmeal are my staples right now. I had some ritz crackers yesterday midafternoon to help the nausea but my stomack got upset shortly after I ate 5 or 6 of them.

No telling. Just like being out of sorts and not being able to do a whole lot about it.  The girls went over to a friends house this morning to play and Chris has been working on the Honda to get the AC working again and then he has been working on camp stuff this afternoon.  Just feels like everyone has something to do.  I'm ready to join the land of the living and be a productive mom and wife again. I don't like the middle ground.

I sent an email last night to Dr. Salvato briefly sharing with her what happened last week (since Dr. Farrow said he hadn't been in contact with her) and asked her what the treatment plan was after this Saturday when our last dose of IV med is done.  I am anxiously awaiting to learn if the midline will be pulled or kept in.  I need to hand this over to God along with the way I am feeling today.  There is an internal struggle between wanting to get excited at getting off of the cefotaxime, which might be causing the edginess and grumpiness and short fuse which would mean not IV (YAHOO!! both arms and hands back) and not wanting the IV meds to cease since its the best defense at killing the bacteria and getting over this disease.  I am feeling physically and emotionally drained....but not spiritually drained.  I need to hand it over to Him who knows all and is in control of all.

Taking it one day at a time and sometimes one hour at a time.  There is a sense of relief when 9:00 p.m. comes around and I know I have made it through one more day both physically and mentally, and hopefully with little damage done to the hubby and kiddos or family and friends. So ready to be self sufficient again....scary! We weren't made to be self sufficient, only God reliant. Okay, so I want to be fully God reliant but able to do more without other human help.  

God willing I will experience that again.  Till then, I need to be content and resting in Him and where I am today.  So much easier said then done some days....whether its a rainy day or a Monday.

Bottle of Time

With His Grace and the help of people we are hanging in there.  I say that not because its been horribly bad or tough but because I know without the first and the last I wouldn't be able to get through.  After not being able to keep food down yesterday (it happened again shortly after I blogged last), we have been able to keep food down so far today (and the day is almost over :)  ).  Chris was at the beach today with the youth and I had a sweet lady at the house all day to help me and my girls. I am pretty sore and am trying to stay on top of the pain meds but not wanting to be on them.  I am in no hurry to get back to "hard" foods and am quite satisfied with yogurt and applesauce. Oh, the food complex I am going to have by the time this is all over with.  Let's just say the Lyme diet is out the window and we are in the "survival" diet mode.  Applesauce and yogurt never sounded so good (or jello).  I did manage to get chicken noodle soup down with a couple crackers for lunch.
Since I last blogged I keep thinking of things I wish I had included but knew that I wouldn't be able to put into words everything that was on my heart.  Today I was thinking (still have lots of time for that...good thing it still works most of the time...sort of) and what was on my heart today can be summed up as: "I am blown away by some people and then I am blown away by some people".
I have been blown away, floored, caught off guard, completely touched and ministered to by people this week.  I never expected the visitors I had at the hospital or the offers we had for helping with the girls, or the all day help I received today by one of the least selfish people I have had the privledge to get to know, or the generosity and thoughtfulness we have received for my family, especially for my girls.  People who have given so freely of their time. I get especially touched when their are arms reaching out for my girls.  I do worry about them in this journey and how it is effecting them.  I have especially seen the effects on Madilyn since we got home, but as I look back I have seen it in the last week or two.  My happy go lucky kiddo who is happy and full of energy from the minute her eyes open till they close at night (because she refuses to take a nap and yet clearly needs one).  She has become a tad sensitive when things happen like dropping a cup of milk, or when spoken to in a disciplined manner. She will cover her eyes with her hands and begin to cry.  Today I made an effort, knowing that for the last week we haven't had a lot of snuggle time, to find a way to hold her despite the very tender abdomen.   Becka, on the other hand, in this last week appears to have thrived off of being able to help others help us and yet completely broke down and cried one night on the phone with me and balled and balled.  It breaks my heart.
At the beginning of the summer I went through catalogs looking for things that we could do, knowing we would be spending our summer days more at home then anywhere else, and most likely with me not feeling well or having much energy.  We bought a couple games as I noticed that on the days I was in bed, they liked to hang out with me on my bed.  We picked up Blokus and What's Gnu? and have had the joy of sharing Blokus with many others.  Both girls continue to amaze me every time we play it.  I love to see their little minds work.  I wanted to pick up a couple things new and fresh and fun.  I even planned some weeks (it only took me half the summer to plan them) with a couple little science activities and bible stories with activities, knowing I may or may not be able to follow through.  This week was supposed to be our first week, huh! Becka has been begging for piano lessons again.  We had tried doing them last Fall but once we moved to the DW (double wide) I took a turn for the worse and I just couldn't be what I needed to be for her as a teacher and a parent.  Last Friday, we started them up again, only this time Maddie started as well, only for our first week to be disrupted with me in the hospital. I figure the hard part is done, the planning.  I have the plan and we will execute on days I'm able.
Wow! Just as I type that I think, "Wow!  That is kind of like God.  He already has the plan.  All of it. He will execute one way or the other".  Sorry. I make connections as I'm typing, but I think most of the time I'm the only one who sees the connection or gets them because of where I'm at.
I had planned many weeks ago that Becka and Maddie would go to this gymnastics parents day out thing for yesterday.  I knew there was a good chance one of their bestest friend would be there and it would give them time to play together. Come Monday evening I knew it wasn't going to happen as I had planned.  Before I was released from the hospital Chris gets a text from the other parents offering to come get the girls Wednesday afternoon, keep them over night, take them to the gymnastics place, and then bring the girls home.  Sure enough, thats exactly what happened complete with dinner for the Chris and the girls to eat when they got home.
The day we got home from the hospital I sent Chris to the post office because I was expecting boxes with the girls curriculum for the Fall (I am so excited!! Such a teacher at heart!) He came home with another box and opened it to find 6 individually wrapped presents for the girls with a card that said, "Becka and Maddie".  I recognized the return label, and then I remembered them asking me for our mailing address.  I never imagined what it would be for.  The girls got home yesterday from a sleep over and sat with me on the couch and each opened three of the presents after reading the card.  The card, written so thoughtfully, affirmed them for helping out at home.  The gifts were a couple books (both of which we have already read several times), 2 sets of twistable crayons (they love those) and a big coloring pad full of big pictures to color and a mosaic art kit (if you haven't seen these you have to check them out).  Something new and fun and fresh for the girls to do and something they can easily do in Mommy's bed if need be.
The lady that came to be with us today while Chris was at the beach with the youth, brought crafts for the girls to make.  Maybe its my poor feeble brain that just doesn't think of things any more or maybe its the extreme thoughtfulness of people and them following through with the kindness in their hearts.  Its extremely touching! My first thought when the girls opened the gifts was, "God's taking care of them also".  I know of several people who have voiced very tenderly prayers for my girls and its times like these that I see them answered.  Pretty cool to hear the prayer spoken by one person and God using another person to fulfill it. In our day and age of selfishness and hurriedness and everything else, it blows me away when people take time out and give of themselves.
Time is a precious commodity. It takes time to drive up to a hospital. It takes time to sit with a friend all day and time to come straight from work to sit with a friend till 10:30 and then drive home late. It takes time to pick things out, have them wrapped and shipped. It takes time to spend an entire day at someone's house to make sure they are okay and that the children are cared for and that things around the house are done and also think of things to bring to do with the children.  It takes time to plan those things.  It takes time to bow your head and ask God to help someone else besides you and your family.  It take time away from your own family and self to go in the middle of the night to watch someone else's children while the parents go to the ER.  It takes time away from family and self to go be with children all day and night while the parents are in the hospital.  It takes time to bring home someone else's children and keep them over night so their parents can come home from the hospital and begin resting and healing.  It takes time to send a text or an email to say, "I'm thinking of you" and "hope you are feeling better". It takes time to come up to the hospital at 6:00 a.m. to pray with us and be with us till surgery.  It takes time to find a card and sign it and put it in the mail.  It takes time to plan a meal, fix it and bring it over (not to mention typing the recipe out on the top).  I think of the song "Time in a Bottle"...only for its title.  If I had an empty bottle this time last week (which I didn't because of those who have taken time before the surgery) it would be over flowing right now with the time other people have given to us.  And these are just naming a few.
In some ways I'm uncomfortable that people have spent their time on us and I feel unworthy and embarrassed that we need it, but that thought is quickly replaced with thankfulness that people have allowed God to use them to help us and minister to us and bless us. All I could think of today is I wouldn't be doing as well right now if it weren't for the time others have spent on us.  I am still uncomfortable with it but its only because I am anxious to join the team.  I still feel like I am on the bench watching the game and begging the coach to put me in.  I look forward to the day when I can spend my bottle of  TIME.

Gallbladder Removed

This last week has blown me away. There is no way to capture all that has happened, and by that I don't mean minute by minute commentary on what happened, but the blessings and times we have so felt God's hands on us. I find myself wanting to grasp them and am afraid I will forget them or lose them and I want to hold on to them forever.
Saturday evening I had a great conversation with my grandmother (my angel in my life) while I was infusing (doing the IV). We had friends over that afternoon from Cypress and their daughter is one of Becka's best friends.  Becka has missed her so much since we moved.  They came down and we had lunch and hung out by the pool.  As usual it wiped me out but was so good to have company. So, after they left Chris hooked up the IV and I chilled out on the bed and talked to my grandma.
Afterwards, we went to Chili's for dinner and then to Target. Becka's friend brought some goggles that Becka fell in love with.  She was exploring in the water like I have never seen her do.  Of course, its this friend that got Becka to swing also.  She sees this friend doing something and she wants to do it. So, we went to Target in search of the goggles and a float for the pool.  Before getting to Target, Chris' cousin called and I was talking to her.  I loved that she called to just chat. We went into Target and we weren't in there 10 minutes before I started to really hurt and it came on fast and hard. Yup, it was another galbladder attack.  I looked at Chris and mouthed that we needed to get home.  I felt bad because I would have liked to stay on the phone and talk but I was in a lot of pain and feared I had come across as rude when I needed to hang up.
The ride home was rough but I was so blessed when my two girls began singing VBS songs in the back seat for me.  These songs are fast and meant to be sung with everything you have but both girls sang gently and softly knowing that mommy wasn't feeling well.  It so touched my heart and I can't help but wonder if they got some of this gentleness from watching others being "gentle" with our family.
We got home and I was just happy to find my bed.  I was hoping a combination of my bed and my evening meds and I could go to sleep and wake the next day and start over.  But it didn't happen.  At some point I fell asleep but woke up with the attack worse then ever.  At 1:30 Sunday morning I looked at Chris and said I couldn't fight it any longer. It had been going on for over 5 hours.  After a couple calls we were able to get someone to come to the house to be with the girls while we went to the ER.  This person has "saved" us a couple times and is always available and willing and there is such a peace knowing that she has our back no matter what (even when she is out of town :)  ).  She stayed with the girls, got them up Sunday morning, got them dressed and took them to church and then had them at her house the whole day.  Such a blessing! I can't say Chris and I had that much fun.
We didn't have to wait in the waiting room but 5 minutes before we were put in a room.  The night/morning is kind of a blur maybe due to the morphine and Zophran I was given.  Some time in the night/morning they did blood work and an ultrasound (I do not remember the ultrasound).  I do remember the blood work because the lady tore my hand up and I remember Chris suggesting she try a different spot. The blood work came back with bilirubin, liver and pancreas levels elevated and the ultrasound showed the sludge in the gallbladder had turned to stones and was inflamed and infected.  We were told we would be admitted and would have surgery that day, Sunday.
The surgeon came in around 9 Sunday morning and announced we would be "hanging out" that day and we would have surgery Monday. He didn't like the liver and pancreas levels and wanted to give them a day to see if the levels would go down. His fear was that a stone had gotten loose and might be blocking a bile duct.  I don't know about anyone else but "hanging out" in the hospital is not high on my list of things I want to do.  I began to prepare for a day stuck to machines.  My pain was minimal my boredom high. I told Chris I would definitely need the sequel to the book I was reading. He left to go home and get things we would need for a couple days.  I opened my book and had barely began to read when something happened I never in my wildest dreams expected to happen.  Person after person came to visit and before I knew it the day was near done.  Another member of our church had been taken to the ER in the same hospital that morning after church and they were able to see us both in one spot.  What encouragement though to see faces and to be prayed with.  One of my bestest friends came up and then Chris came up with the girls.  My friend stayed with me at the hospital Sunday night while Chris went home in hopes to get a good nights rest.
Early Monday morning (4 a.m.) they took blood again to check levels.  We saw the surgeon again who said the levels had come down but were still elevated. He mentioned that he had scheduled surgery for Tuesday morning assuming all went well.  We began to have another problem Sunday afternoon with blood in the urine.  So he sent in a urologist to talk to us.  A CAT scan was done late that afternoon and the urologist made plans to be in the operating room Tuesday morning to scope the bladder to make sure it was okay. The CAT scan showed a 4 mm size stone to the right of the kidney but not in the kidney.
Again, I don't remember a whole lot about Monday but I do remember the faces that took time to come visit with us and pray with us and help that day go by quickly. Chris stayed with me Monday night so he would be there early in the morning when they took me to surgery.  My friend stayed with the girls at home that day.  Its difficult to balance things.  If I'm not real careful I'll find the girls are going from one place to another but on the other hand I can just as easily find that they are stuck at home all the time.  I try to be careful that there is a balance.
Thanks to a fabulous nurse who left me alone Monday night I got a pretty decent nights rest before surgery Tuesday morning.  Our pastor arrived bright and early to pray with us and be with us as we were prepared for surgery.  This meant a lot to both Chris and me.  The pre-op area was buzzing with activity and the scene was almost comical....maybe it was the meds I was on.  I don't remember being wheeled away.
I woke up in recovery and all I could hear was "Code Red Room 636" over and over.  The day before I had heard "Code Blue....". After about the tenth time I rolled my head over and asked the nurse what Code Red was. She explained that it meant "fire" and that it was probably someone trying to smoke in their bathroom.  We found out later by one of the housekeepers that a man who was on oxygen in a room on the floor below ours, was smoking in his bed and he was on fire.  I am thankful for God's protection.
Surgery went well, both the gallbladder removal and the bladder scoped.  The nurse mentioned the gallbladder was quite inflamed.  Surgery was done laproscopically and I have 4 little incisions and they were glued closed, not stitched.  Tuesday I had a lot of cramping and didn't find relief with pain meds.  Another one of my best friends came and sat with us all Tuesday which really helped the day go by quicky.  She and her husband stayed with me till about 10:30 that night while Chris went home with the girls.  The night before when the girls were at the house with a friend of ours, Becka balled and balled.  She does better when Chris or I are home so he went to sleep at the hosue.  I had the same fabulous nurse as the night before and therefore, I was left alone to sleep.
Wednesday, the cramping was minimal and I began to feel the pain of the incisions and still didn't find a whole lot of relief from pain meds.  I got to come home Wednesday afternoon after I showed them I could handle soft foods and could urinate.  The urologist feels the unexplained blood is more menses related as he did not find anything wrong with the bladder.  The bleeding isn't near what it was and we thought it had cleared but it is still there.  We will see about getting in to see the OB somewhere down the line but not within the next two weeks :) Quality Infusion mets us at the house to change the dressing on the midline.  I can't say enough good things about this company that has been there for us and supported us in so many ways.  Another blessing.
The girls went to stay over night with the friends that came last Saturday for lunch.  They were so excited! Their first sleep over at a friends house.  They got home this afternoon and I love seeing them come back from somewhere and can see "fun" written all over their faces right along side the "exhausted" look.  It is good to have all four of us under the same roof tonight.
Today I have been in a lot of pain and have tried to stay on top of the pain meds. I slept all morning not wanting to move once I found a comfortable position where I didn't hurt.  Chris got me up for lunch and I was nauseated.  I got some chicken noodle soup down with a couple crackers but it didn't stay down.  The funny thing was, once it all came back up, I felt amazingly better.  I understand though why they want to keep you.  It is difficult, once again, to balance resting with getting up and moving around.  For me today it hurt either way and so it was confusing as to what I should do.  I soon found my bed, read for a while and crashed again. Only this time I woke to sweet girly voices and their kisses.
I look back at the last 4-5 days and find such peace at seeing God's hands on us.  We had a couple little issues, like the nurse that took almost 12 hours to process our meds so we could take them (long story) but we had a peaceful time at the hospital with not a single person challenging us and Lyme.  Our meds weren't questioned or the doses they are at.  We did need to get on a nurse (the same one) a little about flushing the midline with hepron Monday afternoon but she cooperated and admitted she didn't know much about Lyme or midlines.  Everyone was open to Lyme and did not fight us on any of it.  Such a blessing!!!!  If you have done any reading or watching of videos, this is not the norm for Lyme patients.  Its times like this that I see God's hands on us.  Yes, circumstances are not pleasant, and it definitely was not on my planner to have surgery and spend 4 nights in a hospital but there is such a peace and surrender knowing God is in control.  There is a bigger picture and plan.  It is more an inconvenience for my plan then anything else.  Don't get me wrong, come Monday afternoon I was so ready to be home, especially since I wasn't allowed to eat from the time we arrived in the ER early Sunday morning. I was allowed 1/4 a cup of ice chips about every 8 hours till Monday afternoon when I was allowed some broth and jello.  Jello has never tasted so good! But then was cut off again that night for surgery the next day.  The human side of me gets impatient, grumpy and I get "tired" of what is going on.  But my heart is at rest knowing that whatever comes my way will never, ever blow me off of my rock.
Several people made comments regarding "this" being the one thing that gets me back on my feet, or helps me feel better.  I struggled a tad with these comments because my hope isn't in this surgery or what is to come.  The fact still remained that I have Lyme.  Unfortunately, the meds for the Lyme caused the gallbladder to go bad and not the other way around.  I am glad we don't have to worry about it erupting again. But my hope is in God's plan, whatever that may be.  The Lyme test is what it is and we still have healing to do but I know it will be done at His pace and not the worlds.  If God wants me healed today, I will be and if God allows the healing to take longer, it will.  I am good either way because my hope isn't in the healing itself but the One who is in control of it all. Not sure if that makes sense. I am still processing it all and am not sure how to word what is in my heart. I do know I take it one day at a time because it appears to us that the plan changes daily...sure felt that way in the hospital.
The last dose of the current IV med will be Saturday, July 24th.  I am hoping to, though I know its my best defense, that numbers are good and the midline is pulled.  Please pray for God's will to be done.  I'm ready to be freed from the IV's but will be at peace no matter what.  Having the midline was a blessing in the hospital.  Gotta look for the blessings.  They are all around us!!!

Losing My Mind?

I really don't know where to begin which is part of the problem lately.  I think we have been having more better days but don't want to change that by saying it :) Its very possible we had another herx this week which would fit the cycle but if we did it was pretty minor compared to the others.  Its difficult to tell other than the low grade fever.  I rarely have a temp above 98.0. Usually run 97.7.  I woke up feeling yucky Tuesday after a pretty rough night, roughest yet (will explain why) and felt warm all day. Went in to have the dressing changed on the midline and was running a low grade fever, 98.9.

Things have gotten a little blurry.  Some might minimize it and laugh at what is going on but for me its extremely stressful.  It feels like I am having more and more episodes where my mind just doesn't work, it is clueless even over things that have been routine for 4 months now.  For me, its scary.  Back a couple months ago, I was given a pill organizer by a sweeet lady. One of the best gifts ever !  One morning began taking my medication and noticed one of my sleeping pills in the mix.  I take them in the same order each time.  I had poured the "p.m." batch and not the "a.m." Another night I noticed I had distributed 2 of my sleeping pills for one night.  Caught it as I began taking the pile.  At that point I told Chris he needed to distribute my meds to my pill organizer to make sure this didn't happen again.  I used to have a spread sheet where I kept track of what I took and when but found I just marked off not really paying attention and quit doing it.  The IV medication we are on right now is a medication left over from when I used it as an injection. Therefore, it has some extra steps that have to be followed to "reconstitute" it (its a powder and has to be mixed with sterile water and done in a sterile way") and get into an IV bag.  Before the summer, Chris was consistently home for lunch and would hook me up to the IV pole. Now, he has summer activities and isn't consistently home.  No problem, I'll do it myself. Last Thursday, I had a sweet lady from church at the house helping me and she began watching me mix and set up the IV.  She would then say, "aren't you supposed to do ..?" I realized things I had done for months now, like wipe bottles off with alcohol before inserting needles with sterile solution, I was blacking out on and the mind didn't seem to care about it.  I have some strength issues with my hands, and where the midline is doesn't give me a lot of room to work with when doing it with my two hands, but determined to remain independent I thought I could manage.  We got it hooked up and she left. I looked up to find the IV was never flowing.  I got a little flustered because we were under a time constraint (Becka had gymnastics). For ten minutes I sat there going through each point trying to figure it out. At the same time Becka and I both figured it out...I hadn't flushed the IV line before connecting the IV medicine.  I disconnected, flushed, and connected again hoping I hadn't messed anything up, and it began to flow.  This was a real eye opener that something wasn't working upstairs correctly.

Monday night was one of the worse nights I have had.  I was wide awake most the night.  I layed in bed just hoping if I held still long enough I would get some sleep, any.  I got up Tuesday morning and was achy and feeling "herxy", and figured that was what was wrong.  It made sense. In the past I can't sleep during the day during a herx and so maybe the herx had started in the night...I don't know. I went to my pill organizer to grab Tuesday mornings meds and it was empty. I discovered I had taken Tuesday morning meds Monday night. No wonder I was wide awake!  And, once again, I came to the realization that I could not be left to my own to do any of my meds or the IV.  I know have to rely on someone else to dispense them to make sure I am taking the right ones.  This morning I got impatient with waiting on the ladies coming to help. So, I asked Becka to come over and talk me through it. I asked her what day it was and that it was a.m. and she double checked that I was getting the right box.

I have had two people question whether I should be driving.  Hmmmm good point but I'm not going there.  Basically, the only time I leave the house is to drive Becka to gymnastics or Maddie to dance (which she is done with till August).  I do worry some but feel we are okay, for now.

Another problem we are seeing is that, since the change in IV meds, I have really struggled with Grumpy Gus.  Its a daily occurrance.  It doesn't take much to over stimulate me, wear me out, or do me in. I feel I begin the day with quite a bit less of patience and stamina as it is.  But, it doesn't take long before the patience is gone and I am at my wits in.   Chris feels its the medicine and I have to say when we were doing it as an injection I struggled with my moods, but I just figured two injections a day in the hiney would make anyone grumpy.  After almost 6 weeks of injections, no part of my back in could touch anything without screaming in pain and since my two kids are just the heighth, it happened often.  And though I love the colors blue and purple, I really prefer them somewhere other then on my back end.  I agree with Chris that this is a major possibility along with possibly my diet.  I have not stuck to the Lyme diet strictly since my birthday. I am so food challenged right now that sometimes its all I can do to eat.  I don't know if the lack of something or the existence of something else could be messing me up.

So, I beg for your prayers for our family, especially my girls who are with me more then anyone else.  It is very frustrating to end more days then I would like feeling like I won the worse mom award again.  I don't like how I have been and I am just counting down the days of this IV med (16 I think today) and am hoping the doctor takes the IV out.  I know its my best defense, but short of losing my mind, I need for it to go.  Please pray for test results. Please pray for strength to return as well as my patience.  My family would greatly appreciate it :)  It has been very difficult with the 2nd midline.  I did not expect the mental challenge that it has been.  It is exhausting to say the least.  But, we are pushing through.  I know I am having an exceptionally bad day when I get numerous texts and emails all in one day.  God knew I needed the encouragement those days.  Thank you for being sensitive to the spirit. Again, I just pray for your prayers for my family.  Pray for their mental, physical, and spiritual protection.

I end by saying that I was deeply touched by a couple in our church who approached me Sunday to share that they had watched a video called, "Under Our Skin".  It is a video that goes into great detail about Lyme disease.  I was so touched that they would take the time to watch something to learn about about a disease that two people in their lives are dealing with.  They have a greater understanding now of the different aspects of Lyme and, therefore, they can better grasp what people with Lyme are going through.  When I share about it people are in disbelief.  It is difficult to understand that doctors can actually lose their license for treating a patient for Lyme disease.  It doesn't make sense. But that is exactly the type of disease we are dealing with.

I know how my body is supposed to respond to treatment and how long science says it will take. However, I also am completely relying on God for where ever and for how ever long this journey will take.  It was extremely evident in the ER the last time that I/we have no control over anything.  This journey will go exactly how He ordains it to.  So, on one hand I beg for prayers that numbers are high and IV comes to an end, but in my heart I know He already has it figured out and it will be what HE wants it to be, and nothing else.  I am signed up for the entire ride and will do my best to ride in the passenger seat and let Him drive. It can be scary at times but at least I know I will show up where I'm supposed to without getting lost, and the ride will be less painful if I let Him drive.  It is a daily surrender.  Can't imagine it any other way.

Update on IV

I feel I should have written sooner to update people on the IV situation but frankly, just haven't felt like "blogging".  If not moved to blog I don't even if there is information to update.  The last week has been trying, and marked with frustration and relearning things and I hate re-doing anything...literally.
Tuesday afternoon another midline was put in.  I don't understand why the PICC didn't work and it was extremely difficult to pysche myself out to put it in only for it to be pulled barely 48 hours later. It was supposed to be the best way to go but for reasons only God knows, my body rejected it and didn't like it....okay, the heart didn't like it.  After the heart episode not even 20 minutes after the first dose with the PICC, I should have gone back but didn't out of fear they would pull it or the medicine.  I am used to "putting up with" discomforts and figured this was just another bump to tolerate....and yet I think I knew something wasn't right...I just didn't want to deal with it and hoped it would go away.  It didn't.
Tuesday, it took them two tries to put the midline in.  I pushed to have it put in the left arm but she completely dislikes those veins.  She tried the first time to put it in the same spot as the first midline but couldn't get more then 5 cm of the catheter in. Keep in mind that the catheter goes from the elbow, up the arm past the shoulder towards the chest area. She pulled it out and tried a different area with success.  Each time having to give me a shot of lidocaine.  I didn't mind needles going into treatment. I loathe them now! And cringe when one is near.
The new midline is in a better spot. I can bend (though I'm not supposed to) the arm without a lot of discomfort. We are back to being one handed/armed since I'm no supposed to use that arm or hand, bend it, do any repetitive motions or raise it above my head.  I'm back to assisted showers, and needing assistance getting dressed or undressed.  I really wasn't anticipating having to get used to all this again but the first two days have been full of anger and frustration, just like they were with the first midline when God was teaching me to recognize I couldn't do everything myself and needed help.  Did I not learn that lesson?  Aw, but this time it only took 2 days instead of 2 weeks to recognize something is out of synch and I need help.  The problem is, I need the help, but am tired of needing the help.  Yesterday, there was a sweet lady from church over to help me.  Emotionally, all morning, I bounced back and forth between being embarrassed that I needed help and wanting to help her help me, not content with where God has me....again.  It is a tad more challenging this time because I am able to bend the arm more and so, if no one is around it is very difficult not to be doing things but then I know that each time I use that arm/hand I am compromising how long the midline lasts and therefore, compromising the treatment.  I am emotionally drained by 10:30.  I found myself fighting myself all day long on top of two days where nothing worked like it was supposed to (or the way I thought it should :-)  ). Isn't it bad enough that I don't work like I should?  The last two days one of my girls has been challenging the boundaries and yesterday I put my foot down. Chris and I believe in consistency in our discipline of the girls. Our boundaries and expectations have remained the same but it has been challenging for me (and us) to remain consistent in how we respond due to me not feeling well and the number of people that have been a part of our lives lately.  Its very frustrating for me to see behavior going on that we don't feel is acceptable and not be able to do a whole lot about it.  Yesterday, the big picture scared me more than how I felt and I put my foot down but with all the emotional fighting, and then the constant struggle with the girls to direct appropriate behavior, I was spent.  Yesterday afternoon I lost it with both of them and yelled.  This is when I know something isn't right and something needs to change, and it usually has to do with me....gggrrr!  I went to bed last night feeling like the worst mom in the world and feeling the weight of what this disease is doing to my family.  When we first became parents I had "expectations" of how I thought things would go, and how we would parent, etc.  Parenting out of a disease was never part of my plan.  Not even on the radar.  I despise it!  So, then we are back to learning to be content with where God has me again.
Another thing that made the last two days very difficult was to see a decline in my mental capabilities.  I knew my short term memory wasn't good, and some long term memory gone, and I knew I was having trouble with processing. But yesterday I realized its worse then that.  Chris usually comes home for lunch and "hooks me up"...to the IV.  The IV med we are on right now requires more steps to get it ready. Yesterday, the lady at the house helped me and I am so glad she did but in the process I realized just how absent minded I am.  Wiping off bottles with alcohol is one thing (totally forgot but she caught it) but she left while we were eating lunch and I looked up to realize the IV wasn't flowing...never had.  I got a little flustered, feeling limited being one handed/armed and tied to a pole.  After about 10 minutes of trying to figure out why it wasn't working (we have had faulty tubing before) I realized I didn't flush the line before hooking the IV up.  Just as I verbalized my realization, so did Becka.  Flushing the line before hooking it up has always been done. We are talking about over 3 months of doing this every day.  It should have been a no brainer. Standard routine. But even routine is subject to being eaten by little lyme colored bacteria.
This isn't the first instance of "cluelessness" but this was the worst with possibly the worse consequence. Wednesday, I got to 3:00 in the afternoon before I realized I hadn't eaten breakfast, or lunch and hadn't taken my medication that morning.  I didn't have a helper that day.  Its like its all I can do to get the girls taken care of that I am clueless about myself.  However, Becka was  the one who came up with lunch Wednesday.  I was in a "tailspin" (this is what I am termed it as when I am faced with a decision and I go round and round trying to make one and can't) when I needed to feed them lunch but we were out of bread and milk and other things, and the pantry and kitchen were a mess because we gutted it out after realizing mice have had a party in it (Chris has caught two of them to date), and I couldn't figure out what to do for lunch.  When I am faced with a decision, even if its as simple as figuring out what to feed them, I can't focus or do anything else.  The girls are coming at me with demands and the frustration level rises.  I no longer can do or think about more then one thing.  Becka was the one who said we should have a "silly lunch".  We have done silly sandwiches (ritz crackers with cheese and deli meat and they make little sandwiches). I told Becka we didn't have any ritz crackers (thrown out due to mice) and she said, "no, lets do silly lunch".  Calmly I asked what was in this silly lunch and she proceded to list the ingredients and as she did my mind was going, "we have that, we have that, we have that..."  It was one slice of pickle, 2 pieces of strawberry, ....As soon as she said the item I had forgotten it.  I didn't like the idea because it was a conglomeration of items and I felt like I was just throwing something at them, but Becka and I went to the kitchen and thats what I did.  On a plate, I put one slice of pickle, 1/2 an apple cut up, etc.  Becka said, "its healthy"....she wasn't far off, and the two of them scarfed it down.
I have had moments with medication where I have caught almost taking the wrong amount of important ones and taking the pm medications in the morning.  We have a pill organizer and I told Chris he needed to distribute the meds.  I don't trust my mind.
Yesterday was so bad that I was trying to figure out who I could call to come to the house today (Fridays aren't on the schedule with helpers).  Chris had to keep reminding me through yesterday afternoon that he had today off and would be home.  I had the most difficult time remembering what day it was and that he would be home today.
All this, and more, has left me feeling extremely incompetent as a parent and as a human, feeling like I need someone around to take care of me 24/7. I don't like that feeling. Is this what getting old feels like?  I think getting old is very cruel. We work so hard from the time we are born to be independent. Somewhere we peak and then start going backwards till we are completely dependent again on someone.  Frustrating.
Today has been a better day.  When Chris is home I am complete.  We didn't plan on it, but we got up and one errand led to another, and we were out most the day running errands.  I missed my meds this morning but for the most part felt pretty good (maybe because I didn't take the meds?...yeah, we thought the same thing).  My problem is, I get an ounce of energy and I run a marathon with it, and its not till I slow down a tad that I realize I have over done it.  But it sure felt good to run the marathon.  We will see what tomorrow brings.
For the most part I am tolerating the IV med through the midline better then the PICC. I am still having heart flutters, just not heart flip flops.  We have about 20 days left on this IV medication.  I don't know what will happen after that.  There is a really good chance this will be it on the IV medications.  The oral will continue for another 6-8 months until numbers and test come back at desirable levels.  I look forward to when the IV is done. I figure I have met my quota (and the rest of the families) for IV's and I figure I won't ever need one again :-)
We don't understand the way things have gone, and it gets frustrating when others don't understand either and want answers, and its difficult to have limits after having a taste of freedom (there's a sermon in there somewhere) but even in all the uncertainties and inconsistencies, I do know Who is in control.  There are times, like yesterday, when I am crying out saying I have nothing left and asking what I am supposed to do, and yet I know Who is always with me, always by my side.  Its days like yesterday when I begin asking Him, "okay, God, what are you trying to show me now?"  Its days like yesterday when I am thankful to make it to bed and get up the next morning and have another chance and I pray it will be better then the day before.  I cannot imagine doing life without Him.  Its not because I need a crutch, or an excuse in my time of weakness (which is the only thing consistent lately) but He is my foundation on which everything else exists. There is peace knowing that in the chaos of life, in all its inconsistencies and inconveniences and frustrations and yuckiness, there is Someone who never changes.  No matter how incompetent I am, whether due to illness or from being human, I know He has my back and won't get scared off by the ugly things in my life right now.  He is gracious and He is my rock and only in that is there peace in the midst of chaos.  Those who don't know Him, never experience this peace in the midst of chaos.  The scary thing is, they think they have it.  Once you've experienced the pureness of the peace that only comes from God, you will yearn for it like a child that always wants candy.  Its only Him that pulls me through each day. Some days the windows are all broken and the walls are caving in but the foundation remains strong.  Some days, like yesterday, the entire house has fallen, but the foundation is still there.  I can't imagine having a life built on anything but a foundation.  It makes me think of houses that have burnt to the ground, or been blown away by a hurricane (hurricane Ike to be exact) and in the picture you see a cement foundation and evidence of a house that once stood on that foundation.  No matter what life throws, the foundation remains.  I can't imagine going through the storms of life without a foundation.  There would be nothing left of me if I did.