ER Update

We were at the ER yesterday for 5 1/2 hours, 4 of which were in chairs in the waiting area before called back to a room.  However, during that time they did an EKG, chest x-ray and blood work. I'm so glad they didn't wait to do those till I was in a room. However, once we were in a room (I was just happy to have a bed to lay down on) the doctor came in fairly quickly to say all was normal.  I really hate those words.  If I'm so "normal" why do I feel so abnormal? And why do I yearn to be normal? Normal is something that doesn't exist, yet everyone wants to find it.

Somewhere in one of the conversations, either with the doctor or the nurse, we were told we were being admitted for observation since I am on so many medications. What? You are kidding me, right? We have been on those meds for more than 3 months now.  We didn't come in here for observation because of meds.  Somehow we convinced the to hook up the heart monitor so they could see what was going on, particularly when I lay on my left side.  I told Chris, I don't know how you can see on an EKG, that takes less then 30 seconds, what is going on.  I was hooked up by the nurse and he watched it for a minute and then I rolled over to my left side and prayed it would do what it has been doing. There is almost nothing worse then to have something going on, go see a doctor, and it won't happen for them.  But, it did this time and his eyes got big as he saw what I was feeling in my chest, the flip flops.  He went and got the doc and we did the same exercise for her so she could see the difference.  Yup, she saw it too.  Thank You! I'm not fully crazy!

At that point she calls Dr. Salvato to fill her in and returns to inform us that they are going to pull the PICC, and I'm to do my med IM (injection) and then schedule to have a midline put in this coming week. Um, no. We argued with her for a while on pulling the PICC.  Having limited knowledge about Lyme she didn't get it, not many do, honestly.  We went round and round about pulling the PICC. Obviously the tests were fine and initially we were told my heart was fine. So, if its a matter of putting up with some discomfort and avoiding laying on my left side, then I choose to keep it in.  I can put up with discomfort and the limitation of not laying on my left side....something no one gets.  If I have to choose between putting up with discomfort and limitations in order to fight this disease with all I have then I choose that over pulling my best defense in getting my life back.  I have put up with discomfort and limitations for the last 10-15 years. Trust me, though not fun or easy, this was minor compared to other discomforts...um, like the gallbladder attack (everything is compared to that..it doesn't get worse then that then I can handle it). That, and I wasn't about to do IM.  If you have have done injections in the hiney twice a day for almost 6 weeks with something as nasty as Cefotaxime then you know why I won't go back if there is another option. It makes for one Grumpy Momma! If you haven't experienced this then you have no idea unless you have lived in our house when I was doing them :)

She gave Chris and I time to talk.  My mind is immediately trying to problem solve.  My chest was pretty tight today, and it was as if God wanted me to remember that, as I all of a sudden felt just how tight.  Only then did I think that if it was that tight in two days, it could be a whole lot worse in 25 days, and would we be looking at a more serious problem then?  So, reluctantly I began to try to accept the idea of pulling the PICC.  I was in disbelief. We had just gone through the "surgical" procedure two days earlier to have that thing put in. I had pysched myself out to get it, thinking of all the positives and advantages and "perks". Yet, none of them served true for us and now we were looking at pulling the thing.  Okay, if we were going to pull it, then we had to figure out a way to avoid IM's.  No sister, am I doing IM's.  Then it hit me. Pull the PICC and put in a peripheral (not much better then IM's if it takes them 4 tries to get it in, but doable) till another midline is put in.  So Chris calls in the doctor who had utilized that time to come up with the same idea only for it to die as quickly as both of us thought it up. ER's have different sets of laws set up and one of them prohibits patients leaving with "equipment" still attached.  Okay, then I just won't do IM's till the midline is put in. I will give my body a rest.  The doc had the PICC line pulled within seconds.  They hooked the heart monitor back up, and though I didn't feel better and still felt some flutters (no flip flops though), the heart monitor showed "perfect" lines and the doc was happy. We were then discharged and headed home.  The whole time, being in disbelief, all I could think of was this was God, again, showing me I am in control of nothing, zip, zero, nada....except one choice: Roll with His flow, or go against it.  I felt God saying to me today, "Are you still with me?  Even after this, are you still with me? Do you still trust me?" Yes, God, I am and I do.

I feel like we are going backwards in some ways and I am not looking forward to another midline.  I have enjoyed the use of both arms and hands for the last 10 days. A feel I just went from independent to dependent again.  But its better then no IV all together and definitely better than IM or peripherals.  Count our blessings, name them one by one....

Today I woke up to get me and the girls ready for church, looking forward to hearing them sing a couple of their VBS songs in church.  My feet hit the floor and the pain was strong and the stomach was nauseated.  The gallbladder was yelling at me. Funny how I hadn't felt it during the last two days.  There was no way I could make it. It was all I could do to get them ready for Chris to pick up and get me back to bed.  The last thing I need is to be back in the ER with them taking my gallbladder out.  We had been told the last time we were in the ER for the gallbladder (yes, I've gone way beyond my quota for ER visits this year) that if we had been in a "regular" ER they would have taken it out.  Only the "regular" ER's are open on the weekends.  Dr. Salvato has also said to call her if I had another acute attack.  Having not quite finished processing what happened yesterday, the last thing I needed was to be back in the ER.  However, having looked at the last 3 days, it didn't completely surprise me that I was feeling this way today.  Three days of constant go and high energy events and I was way over done.  I have been in bed all day.  I slammed something down quickly, after the girls went to church this morning, so I could get my meds down which included advil and phenergin for nausea.  I was crying and angry because it wasn't what I wanted.  While I was getting the girls dressed, Becka got frustrated with me that I "haven't been in church with them for a long time".  You can't tell me this isn't effecting them and thats the most difficult thing about fighting this disease.  If it just effected me, that would be one thing and I could deal with it. But when I see the effects on Chris and the girls, then its almost unbearable.  I would miss hearing them sing this morning in church.  I hate missing anything of theirs...anything.  You can't get it back. No amount of videos or sound recordings can replace seeing them in person and being there in the crowd where they can see you watching them.  Its times like this where I am weakened in my own strength to fight this thing.  It is out of my control and I hate it.

Chris and the girls came home and Chris made me something to eat and I quickly slammed it down in bed so I could roll over and go back to sleep.  Another day gone by with little of my participation.  Its days like this where I feel like the world is spinning and going on without me.  I've to hang on in fear of being spun off and forever detached from it and yet I already feel so detached...detached from our church, most of my friends, and my family.  Its times like this where its more and more difficult to hold on to Gods promise that there is a plan for me, but I do and I will and His promises are the "rock of my heart" and the one reason I am still here physically, emotionally and spiritually.

Thank you to all who have sent us encouragement.  One thing that helped me through yesterday were the messages on Facebook and through text telling us to hang in there. Thank you! You will never know how fueling those messages were. It was as if God used several different voices to tell me Himself to hang in there.  I am on for the ride. Its not fun but very crazy, and the scenery is not always pleasant but it is what it is and we will see it through to the glory of God.  Please keep praying for us, especially Chris and our girls.  Though I hate for my girls to be going through this time of growing up with a sick momma, I can't imagine the witness it is to them.  God will use this in all four of us,...someway, at some point, some how.  Till then, we will grip the handle bars together and hold on.  We are not in control of whats around the river bend.

Off to ER

After conversations with Quality Infusion who then spoke with Dr. Salvato, we are off to Park Plaza Hospital's ER to have the PICC line checked due to the heart issues.  The concensus is that the PICC is in to far and needs to be pulled out a little.   I'm not looking forward to this.  My arm is black and blue from Thursdays procedure to put it in and there are to stitches on the device to keep it in place. So I'm not looking forward to having those pulled and possibly more put in.  The black and blue I think is from the local anesthetic shots. So I'm dreading them possibly doing more shots on an already bruised arm.  I fear them pulling the PICC or the medicine. Please keep us in your prayers as we continue to journey through all this. I was looking forward to a day at home....now there is another plan.

Grumpy Human, Weary Heart

I wouldn’t be “real” if I didn’t blog and share where I’m at today.  Basically it comes down to one thing…I’m human. I really hate this sometimes.  I have this great thing called a relationship with God and I love Him so much and have such a passion inside for sharing with others His love and what He has been doing in my life lately.  But He must be chiseling away another layer because I feel like I have hit another brick wall.  How do I know? I’m grumpy.  I would like to give it a name and say, “Grumpy Gus is here again” but I’m afraid I’d be committed to a psyche ward somewhere. I finished my blog yesterday really trying to update what happened and yet there were things I thought of later that I felt I should have included but then that’s followed by the thought that I’m glad I didn’t because then it would seem like a downer.  Today, I’m tired of thinking. I’m basically tired of everything.  It began yesterday with this nagging feeling of being bummed with having another IV in.  There is this raging battle going on inside. One side wants the IV because I know its my best defense and I want my life back, to be put it frankly. But there is this other side that just hates to be limited or inconvenienced in any way, and well, the last 6 months have been pretty inconvenient.  So, if I seem too “happy” about getting an IV its me trying to be positive that we are doing the strongest and most that we can do which means getting well, right?  And if I seem like I complain a lot, well, that’s me tired of this song and dance. 

The girls were at VBS this morning and I had a morning that I wasn’t chasing something medically and I was able to put on some music and unbury the desk in the office that has bills that probably need paying.  I used to be able to do that with people home but now, not being able to think about more than one thing at a time and getting overwhelmed easily can’t do it without Grumpy Gus showing up.  I do best when left alone I guess, though Grumpy Gus tries to knock on the door….

Saturday morning....

Last night I went to the girls VBS program. I was so grumpy when I went.  The last two days have been so full. Yesterday, the girls had VBS in the morning. They came home and ate lunch and I did my IV and then we had to leave to get the dressing changed on my PICC line. Quality Infusion was busy and when its busy it really isn't a place for the girls.  They changed the dressing and went to draw blood for labs and couldn't draw blood out of the PICC, something that was supposed to be an advantage to having a Power PICC. So, they had to stick me again, twice, to get blood for labs. This may not seem like a big thing but I have reached my limits on being stuck with needles. There was this lady there that talked non stop from the time we walked in the door to the time we left, loudly. My first thought is she is a very lonely person.  The Labcorp tech, who is shares the room with Quality Infusion, listened intently the entire time to her. My thought was, "He is a better Christian then I am" because I don't think I could have. Maybe I could if I wasn't there for other things and didn't have my girls there, but....

For the most part I was able to tune her out but by the time we left I was done.  That what Chris and I call it when I have nothing left.  What little energy I had was used up to contain myself from climbing the walls with all that was going on in that room.  Its like a kid who is over stimulated.

The dressing change took longer then it should have and we were pushing it to get to a private lesson arranged for Becka with her coach. We got in the car, I start it, and it beeps at me. I look down and it says 0 miles to empty....no gas. Okay, we were going to be on time.  At this point I would be happy just to make it to a gas station.  Becka starts praying in the back seat.  We made it to a gas station and I put in enough gas to get us home and off we went. We made it to the private lesson.  Her coach had her show me a skill that Becka is able to do that is a level 4 skill and she is on a level 2-3 team.  That was pretty cool.  She struggles with vault but its all mental. She can do it but she has to decide she wants to do it, and then there will be no stopping her.  Her coach, again, mentioned that Becka has both talent and a good work ethic.  Pretty cool.

We leave there to rush home to eat because the girls have their VBS program tonight. Something I didn't know about when I scheduled the private lesson.  By the time we got home I was fried. Two days of go, go, go and I'm done and grumpy.

I go to grab the video camera and it won't work which further frustrates me.  I questioned myself as I walked out the door if I'm just not cut out to be a pastor's wife because it frustrates me in moments like this where the camera doesn't work and he is at church and can't help me.  But then I thought, "if I were healthy it might be a different story."

I walk into the church feeling so alone and wanting to be left alone because I'm grumpy and don't want to answer any questions.  I look for a seat and walk up close so I can see and they all appear to be taken. One of our sweet ladies told me to sit behind her but there was a purse. She moves it and says I can sit there.  I did but quickly regretted it as the lady that had them saved came with her family, and though I felt there was plenty of room, I felt it was awkward.  The ladies in front of me asked how I was doing, and, feeling safe with them, I mentioned I was hanging in there but I was grumpy.  I regretted sharing that as soon as I did.  I'm being real and honest but I'm afraid it comes across as just being negative.

The program was fabulous! I was blown away by my girls and there is nothing like listening to over 200 kiddos sing for God. I cried, as I usually do during these programs, as the spirit moves me and dissolves all the "stuff" that had been hanging on my shoulders when I walked in.  There aren't words to describe it.  Part of my emotion was sadness hearing the music having not been a part of it all week, like I have been for the last 6 years.  But most of it was joy as I see and hear my girls get excited about God and sing for Him.  It sent Grumpy Gus on his way out the door and I wasn't Grumpy after the program.

We came home and I got the girls bathed and ready for bed. A neighbor called and asked Chris to come over. His wife came to our house and it was so nice to talk with her.  Again, I analyze the time and worry I did most of the talking and wasn't a very good host.

As we went to bed I layed on my left side and my heart started doing its flip flops again.  Something is definitely not right. All day yesterday it felt shaky like it would go into turbo mode at any moment.  Its exhausting because I don't know whether to say anything or not.  On of my bestest friends was texting me encouraging me to call and tell Quality Infusion.  But on this side I have Chris telling me to hold on and hold out.  At the dressing change the nurse went on his drill of telling me of warning signs and when I should call them.  He then said, "palpitating heart" and I stopped him and shared that I had, what we call, a heart episode the day before after the first treatment.  He down played it until I mentioned it was 175.  His eyes got big and he said that it was definitely a taciocardio something....and quickly said if happened again to call them. He then went on with his usual drill. I didn't mention that it lasted 40 minutes and that I can't lay on my left side with my heart doing flip flops.

So, here we are this morning and I know I need to call them but I'm scared to.  I don't want to end up in the ER. I want to stay home this weekend. I don't want the PICC line pulled or the medicine pulled.  But I know the discomfort in my chest shouldn't be ignored.  So, I am going to eat, call Chris (he's at gymnastics with Becka) and probably call Quality Infusion.  

I am just so tired. I'm tired of people questioning and not understanding what we are going through. I have done nothing but "hold on" and "hang in there" for the last six months, realistically, the last 10-15 years.  I just hit a limit where I'm tired of being stuck, not being able to do 80% of the things used to be able to do, and getting completely exhausted doing simple things like laundry or running an errand. The human side of me has nothing left. Nothing left to talk myself through looking at the positive things and fighting through the negative stuff.  This is when and where the human side really emerges...and I hate it.

I heard a song on a cd my Dad made for me and it puts into words what I was feeling. The chorus is what I am experiencing.

The Rock of My Heart by Sumphonia

My Lord, I need nothing beside You

Without You I could not have stood

Your promise is my hope and my refuge

Your nearness my strength and my good

(chorus)

My heart may be broken with me,

My earthly strenghth may depart

But You are my portion forever 

You are the rock of my heart

You are the rock of my heart

When I was distressed and embittered

By things I could not understand

Your presence was continually with me

You always took hold of my hand.

(chorus)

My heart may be broken with me,

My earthly strenghth may depart

But You are my portion forever 

You are the rock of my heart

You are the rock of my heart

I know that your counsel will guide me

In wisdom, devotion, and love.

And afterward, you'll call me to glory

To dwell in your presence above.

(chorus)

My heart may be broken with me,

My earthly strenghth may depart

But You are my portion forever 

You are the rock of my heart

You are the rock of my heart

This song was followed by the kids VBS program where they sang praises to God.  Oh, even in the times I feel I have nothing left and I can't do this anymore he waters my soul with a song on a cd and by kids who so easily accept His truths and sing about them.  

As Becka reminds me with scripture she learned from Bible Drill (I love that program):

"When I am afraid, I will trust in You" Psalm 56:3

He is my strength, my portion, and my life rests in His hands. It is His to do with it what He wants so that He is glorified and His plan prevails. 

PICC Put In Today

First of, I couldn't have done today without being accompanied by one of my bestest friends who took all day to "hang out" with me.  There wouldn't have been calmness without her there.
We took the girls to VBS and "dropped them off" (I still hate saying that) and headed to Park Plaza Hospital for the procedure.  I made it out of the house this morning with everything on my list done or in my possession.....everything except the address and directions to where we needed to go.  Gotta love Lyme!  Of course, yesterday I called to varify, check, get more information on the appointment today and they called me back this morning at 7:41 saying they wanted me there at 9:30...yah, wasn't going to happen. I had preregistered over the phone so I was hoping we were good. We got to the hospital, me and my turned around brain and my bestest friend, a little after 10 (can I just say for the record...I hate parking garages).  From the moment we stepped foot into the hospital till the moment we pulled out of the parking garage, our experience was nothing but positive. The best way I can put it is everyone we encountered loves their job..if you know what I am saying.  The procedure was explained and I was allowed to ask questions and see the PICC (its purple...I think..and really long with two tails...thats what they call it).  I was told I would want a "power PICC" and thats exactly what I got (it hasn't helped with the energy level yet :-)  ) I was escorted to a surgical room but didn't have get into a fashionable gown. It was weird. I was asked if I had a preference of arms and I spoke right up and said left arm.  They spend more time preping me and the room then the time the actual procedure took.  I am completely covered in sterile towels and blankets, with a heater blowing underneath between my feet. :)  They put on their heavy duty x-ray gear with a sterile gown and gloves over it and waited for the doctor. He came in and put at least 3 shots of local anesthetic in and started doing something else and said, "ouch". He asked if I could feel that...um, yeah! So he did 2 more shots to numb it. Didn't feel a thing after those 2. Within 10 minutes he was done and out the room and, again, they spent more time cleaning up and uncovering me then the time the actual procedure took.  They used x-ray and ulrasound to guide the catheter in.  It goes in my upper left arm above the elbow and goes almost to the heart.  It is made to last a year (I still don't get why we didn't do this to begin with) with very little limitations. I can't swim (his words) or get it wet (so we will have to go back to cling wrap for showers) but I can use the arm, lift the arm above my head, bed the arm. I asked if I can lift my children and was told yes. YIPPEE!!  I can braid their hair and do things I couldn't do with the midline or the peripherals.   They can also draw blood for lab work from the PICC so no more needle sticks (hopefully) for a whileThe nurse at Quality Infusion cautioned me and said they still don't want me to do a lot of repetitive motions...I'm not supposed to paint ceilings or any other building type stuff.  Um, okay. No problem. Don't have the energy anyway.  I am happy if I get to do my own laundry and dishes and do my girls hair.
We left the hospital and headed to Quality Infusion for the first dose of Cefotaxime in the PICC and pick up supplies.  We were there quite a while while orders got changed and things worked out and payment given (ouch!) and first dose administered.  At first we were told we would be doing 2 infusions a day but I just so happened to ask if we could possibly combine them into one and it was approved (and the ordered changed). Unfortunately, it didn't change the price any :(. First dose went in taking a little over an hour and we were out the door headed to grab lunch and head to Becka's gymnastics where Daddy dropped her off.
When I stepped out of the car my heart went into  one of its episodes and it caught me off guard. I haven't had a heart episode like this in years.  I have had difficulties with my heart in the past which we now know believe falls under the light green colored umbrella.  I was diagnosed as having a regurgitative heart valve (aka leaky valve) and it causes episodes where it feels like it skips a beat or it goes into what we call "turbo mode" but usually only lasts about 30 seconds. So, we started walking into the building and I figured it would kick back into its regular slow self by the time we got inside. But it didn't. I grabbed my phone to check the time to time this episode.  Once inside I started drinking my cold water to see if that would help and it didn't. I ate my sandwich but was very uncomfortable with this thing in my chest beating out of control. It was beating so fast and vigorous that it moved my body. Its difficult to count because its so fast and irregular.  At one time I tracked it at 175 and then 164. After 20 minutes of continuous rapid heart (unerstatement) I called Chris to get his take. I didn't want to call Quality Infusion in fear that they would send me to the ER or yank the IV med from me. Neither of those did I want. I just wanted it to kick back to slow mo!  I had tried slouching down in my chair and putting my feet up on the wall knowing I looked like the most ill mannered adult in the room.  After 35 minutes of continuous racing I got on the floor, layed on my back and put my feet straight up on the wall.  I looked rediculous but I needed to do something or call Quality Infusion.  After 15 minutes like this it went really irregular as if it was trying to find it normal pace and then it slowed to 126 and eventually leveled out at 102 and stayed there. My resting heart rate is usually in the 60's, never above 75. I was tired of being on the floor looking weird so I got up but my chest felt like I had ran a marathon only I don't remember my legs moving.  Its has stayed stable the rest of the evening with a couple moments where it felt it was about to kick back to turbo. I am nervous to see what happens with tomorrows dose.  My fear is that it will be the medicine and we will have put in a PICC for nothing. Keep in mind we are using medicine we had left from doing injections.  Insurance will most likely not approve any more IV medicine. But, it will be what it will be.  God has it all "figured" out. I'm just on for the ride.
I go back tomorrow for a dressing change and then will go in once a week for dressing changes.  It is sore tonight. It has been weird today since they put it in. There is a white "sock" on that arm to keep the "tails" from catching on things and from flopping around. I don't know if its the sock or the feeling of an IV there but I have to keep reminding myself that I can move and use that arm.  For 3 months I couldn't use the arm with the IV.  Now I can and yet I find myself babying it by not using it. It will take some getting used to.
The girls have had a blast all week at VBS and they have a program tomorrow night.  Short of a gallbladder busting or a heart peeling out I will be there ready to hear their gorgeous voices sing praises to God.  He is good, all the time!!!  And I thank Him for always having my back and for being in control of things and already having everything "figured" out so I don't have to :)  Goin' with the flow, whether it feels "normal" or kicks into turbo speed.

Mice and Women :0

I was quite anxious about today's appointment. I had several questions and I was afraid she wouldn't be patient with me, but be quick to move on to the next patient.  Due to VBS at church Chris didn't go with me to the appointment.  Not wanting to go alone because I don't trust my brain and wanted someone there to also be my advocate, Chris asked his mom to accompany me at the appointment.

I showed up early and was taken back before my actual appointment time (how often does that happen-um, never!)

The nurse was short and impatient with me. I was shaky and my mind was in a fog worse today then usual it seemed. She went through her usual drill asking the same history questions they ask me every time. It gets old and I want a copy of their form so I can xerox it and just hand it to them each visit to spare them the drill.  Usually after the nurse another lady comes in that is the physician assistant or something but she didn't come in today. Dr. Salvato came in fairly quickly.  I began to fumble around what I had planned on saying, with my notes in my lap, about not being able to get answers on the phone. I knew the way it came out didn't sound good and might cause a rude response but it didn't.  I asked if there was a better way to get answers other than the phone and waisting both our times by coming in for an appointment. She gave me her email address.  It satisfied me for now. Hopefully it will work. But she was very nice, patient, and answered all my questions and didn't appear to be anxious to move on to the next patient-an answer to prayer.

The good news is the Lyme test came back with one less band which is very good news.  She reminded me that our goal is to have 2 Lyme tests completely negative (no positive bands) in a row.  The bad news is the CD-57 level was 18, which is lower than where we started (26). However, she said not to look at the number as bad news. She said to view it as the body is quite obviously still fighting the Lyme which is causing the immune system to be so suppressed (thus the low number).  This was comforting to hear as I was quite concerned about the lower number.  There were several questions dealing with the pharmacy saying one thing and her office another and those were quickly worked out (basically the pharmacy and her nurse are clueless).  I asked about the ultrasound results regarding the gallbladder and she quickly went over that. She said she wasn't too concerned because the bile ducts were clear in the ultrasound and I was on medicine that would help with the sludging in the gallbladder.  I asked her if I should be concerned about the nagging discomfort and/or pain under the rib cage and she said no unless I was having acute attacks. I mentioned Friday night at the ball game and how much pain I was in, not knowing if I should call or not.  It is so difficult to know when something needs medical attention because there is always something hurting or not working correctly, etc.  Most of the time I just cope and move on and I have learned to function (although usually with the grumps) with it all.  Friday night was pretty bad and I was border line ready to call the doctor's office but didn't want to end up in the ER again. I knew if I did they would probably take the gallbladder out, based on what we were told the last time we were in for it.  Dr. Salvato said that if there was another acute attack I was to call her and they would run a test to check things out again and if need be take it out.  The only thing that will help with the gallbladder is to get off of the IV meds. Unfortunately, the only thing that has made a dent in the Lyme is the IV med.  When I lay low I'm usually okay with the discomfort but when I am up and about I'm hurting under the rib cage.  Balancing act.

The main thing discussed was what to do with the Cefotaxime medicine left over from doing injections before the IV.  At our visit last week Chris and I both understood (that's why I take someone) that if she chose to use it a PIC line would be put in, but the message on the answering service said to do the injections.  I had a problem with this since she told us we lose 50% of the medicine when its administered via injection and we get 100% of it dispersed throughout the body if its administered via IV.  In my non medically educated mind the IV is the more efficient method to go.  I also don't care for a black and blue bottom that doesn't like coming into contact with anything, making for one grumpy momma. Her main concern with the IV route is insurance and cost. Since we "improved" on the Lyme test, even though the CD-57 was lower, insurance wouldn't approve the IV.  Since we already have the medication and some of the supplies needed to reconstitute it, she decided to go the route of IV and try to get Quality Infusion to do it as minimally as possible.  We are scheduled to have a PIC line put in tomorrow, Thursday, at 10:00 a.m.  I was told Quality Infusion would call with details but I knew I could go downstairs and talk to the head nurse and get the scoop and thats what we did. She immediately called the head guy in pharmacy and the three of us quickly went over what was needed and not needed and how it needed to be done. Tomorrow after the PIC line is put in as an outpatient procedure, I will head back to Quality Infusion for the first dose and they will go through things with me again.

Claudia, my mother-in-law and I went to grab some lunch and Quality Infusion called with the "cash out price" which I thought was weird and the amount was choking.  I wanted to be sure that there wasn't more there then we needed but couldn't seem to that through to the lady (I don't communicate well what I'm thinking).  She said I would need to rewrite the order, get it approved by the doctor and it would need to be run by her all before Thursday.  I knew there was nothing I could do with it till today and for once didn't panic about it.  It was what it was....one of our new sayings in our house (it is what it is). I headed over to gymnastics to meet up with Becka and was a little afraid to share with Chris the cost.  I don't keep things from him but I did want to make sure the timing of the information was at a "good" time and not at a time when he needs to focus on something else instead of being bogged down with this stressor.  As I got to gymnastics, the head nurse called and said she needed to varify some information because she was rewriting the order for us. Within another 30 minutes we had another quote which was half of the first. Its still a choking number but not as suffocating as the first number.  It has to be paid all up front Thursday.  

I have enjoyed my week of no IV.  It sounds silly but I have enjoyed doing my own laundry and braiding and doing my girls hair.  The PIC line, I have been told, won't be as limiting but I am discouraged from doing any repetitive motion and no building of things-like literally. I won't have a problem with the latter one seeing how my lack of energy and strength keep me pretty pinned down.  I will be back to wrapping it for showers and we will have to see where they put it as to if I can shower solo or need help. I'm hoping I can be solo.  Its been so nice having that independence :)

Unfortunately, having a week of no IV I started "projects" that were instantly put on hold 3 months ago after moving into the house, somehow thinking I could get them done.  They will have to wait.  We have to wait and see how this PIC line works and just how limited or not I am.

The girls are having a blast at VBS this week.  They come home with so much excitement and energy, and are such chatter boxes as they share with me what they got to do. I love it! I just wish I was there in the middle of it.  I love that they are out of the four walls of this house getting to do something.  Yesterday, I watched Becka, who was at VBS all morning, so focused and working hard at gymnastics. Of course they both crashed last night but I was so impressed with her.  

I was snuggling with Maddie this afternoon during "cc" time (they watch a 30 minute video before nap time) and part of me was on part of her. When I moved she looked at her legs and said, "you decorated me" as she looked at the imprints my clothes made on her legs. It was so cute! We layed there and she played with my nose and rubbed my arm.  She is just precious.  I am so undeservedly blessed with these two girls.

I was out and about this morning looking at stuff for their curriculum this Fall and for stuff I want us to do this summer and I am hurting under the rib cage. So I had planned to take a nap when the girls went down but I have a little girl struggling to stay down and I'm afraid Chris and I now share our room with a critter.  Yes, a critter.  I walked in our room to my nightstand to put something there and spotted something on my night stand. At first it looked like brownie crumbs, or cookie crumbs....not mine, of course...I only wish!  I have a can of nuts on my nightstand and as I looked closer the "crumbs" looked like crayon shavings. My head is going round and round trying to process what I'm seeing. I notice that the "shavings" are perfectly around the base of the can. I pick up the can to discover the plastic lid had been gnawed on and that the shavings on the night stand were from the can's lid.  Keep in mind this night stand is right next to my bed and less then a foot from where my head rests. Um, ewwww!  In the DW (double wide a.k.a. trailor we lived in before this house) I found "crumbs" on my night stand and several nights later was introduced to a mouse.  Let's just say we aren't friends and he is no longer in the DW.  Why is it my night stand?  Oh the unsettling feelings that go through my body at the thought of an uninvited furry guest sneaking around what I thought was my "safe" place.  I showed Chris and he said, "when did he do it? You would think we would have heard it." like the critter would have the nerve to do it in broad daylight like a friend making themselves comfortable in your refrigerator.  I do find some comfort in knowing it is probably just as scared of me as I am of it but that comfort doesn't last long as I am reminded that we are sharing space.  So, as I sit here and type, I know I should be trying to sleep but I'm struggling with what might be happening as I close my eyes and lay on my bed in the dark. Hhhhmmm, maybe I will move to the couch...as if the couch is somehow "immuned" from critters.  Time to get the sticky tape out again and rage all right war on anything shorter then a foot tall.  If Becka finds out we have a critter she will want to keep it as a pet.....actually, that may not be a bad idea. So far, everything she has put in one of her "cages" has died. Well, everything except the tadpole which was supposed to be a frog by now but isn't. Nah! Time to rage war and take the castle back...in more ways then one :)

Brick Wall

I am at a low spot. A place the last couple todays, but really badly today, where I am just so sick of being sick. I'm ready to join the living. Yesterday was Father's Day and I wasn't feeling well (what's new). I felt bad that I couldn't do a whole lot and I was the worst hostess to Paux Paux and Baba. This week is VBS at church.  I have a peace that I'm not to help this year and know physically I wouldn't hold up but this is the first time in 6 years that I haven't helped in some capacity at VBS.  There was a small part of me looking forward to some time home alone. I started making lists of things I could do as if I had all the energy in the world. I took the girls this morning and it was killing me not to be a part of it. I am not a "drop my kids off" kind of mom.  I was walking out and saw a family just standing in the gym with two little girls and I asked them if I could help them.  Mom didn't say a whole lot but handed me a printed copy of their registration. I told her I would take the girls where they needed to be.  I recognized one of the girls as being in Maddie's new sunday school class.  I got them to their classes (after mixing up one of their names-thanks Lyme).  This is me, helping.  I have recognized in the last several months that one of Becka's gifts is "helping".  This morning I see we have it in common.  We both love to help so much that it can come across as being over bearing or controlling.  A big "ah ha" moment for me this morning.
But what I wasn't expecting was to break down when I got home.  My heart is yearning to be at church doing, helping, being involved, loving on some kids, teaching them about God.  Its moments like this weekend and today where I just hit a the wall called, "I don't understand this" and I turn around and hit the wall called, "I'm so sick of being sick".  I know without a shadow of a doubt that God has a purpose and a reason for this Lyme.  Most days now I can embrace it make light of it but there are days like today where I am back to hating this disease so bad it hurts.
This weekend Chris and I were challenged by someone on whether this is Lyme and that we weren't seeing the right doctor.  This infuriated me so much.  I kept having a reoccurring thought, "You are either with me, or against me".  And if you stand against me, then you are against my God as well.  The way it was done was not at all supporting and what Chris and I need right now  is support and not judgment, whether you agree or disagree with the disease or its treatment.  This, again, is where I get so frustrated because people don't understand Lyme.  Its not like any other disease and instead of reading and trying to learn what they can about it they take the opinions of others as fact and turn around and judge and criticize others.  I was treated as if Chris and I haven't spent hours upon hours researching this disease, not to mention the years spent going from doctor to doctor with everything its not, but then testing positive for Lyme.
I was so frustrated by the "challenge" and the emotions were raging. I was texting a friend and there was picture in my head of me hanging and clinging to a vine, hanging off of a cliff and I am being pelted by things and I'm afraid I'm going to lose my grasp and fall.  As I was texting my friend this I realized my picture was all wrong.  I needed to be picturing myself in the hands of God, being held by His mighty arms and hands, and Him sheltering me from the things being thrown at me.  As I changed the picture in my head, the emotions raging inside ceased and I calmed down.  I grabbed my bible and spent some time in the word and I prayed.
I am so thankful for the friends I have that support us unconditionally.  The one I was texting yesterday sent me a scripture. I didn't get it till this morning but it ministered to my heart so much.  That is what Chris and I need. We need people to unconditionally love and support us even they don't understand or agree or get what is going on with us.  We won't always understand what God is doing.  We are to simply look to Him and trust and obey Him. Trusting and obeying isn't always easy. I know I'm not supposed to be at VBS this week.  I have a peace about it but I don't get it. I don't understand why. But its not about understanding why.
I remember a lesson I learned a year ago when God told me not to pre-register the girls for preschool.  I didn't understand why.  I knew if I didn't they wouldn't have a spot come Fall.  I questioned and I questioned it, trying to understand it. Because I didn't understand why I went ahead and signed them up. As soon as the forms and money left my hand, I knew I had disobeyed.  The packet came that summer with more forms to fill out and turn in and I literally could not open them or look at them.  Chris and I talked about them over and over, trying to justify anything and everything. It came down to the deadline and Chris and I came down to this one simple truth: Just obey.  Its wasn't for us to understand or figure out.  The preschool didn't understand either.  Later that summer God called us to homeschool and to start homeschooling that year, putting Becka in Kindergarten a year earlier then the rest of her peers.  I would have never imagined or planned on doing that.  Most of the time when God is telling us to do something, we will respond, "are you crazy?". Most of the time He calls us to do something that we could have never planned or imagined doing because we know we can't do it.  Most of the time God calls us to do things we can't do with our own strength because He wants us to rely on Him, trust Him, so that He is glorified in the end, not us. So, most of the time we don't understand why He is telling us to do something or why we are going through something.
I don't know why I am going through Lyme and why we have the doctor we have and why her office is a pain to deal with and why.....the list goes on.  But I will cling....no, I will try to rest in His arms as the things of life are pelting me and I will trust and obey the one that has be covered. This is what I will rest in this week as I am getting to do what I planned and wanted to do. It won't be easy but following Him isn't easy because it means we have to give up our plan and follow His, whether we understand or agree or not.  Trust and obey.
So, I will blow my nose and figure out what I am supposed to do with this time on my hands and this body that is weak. I guess a good place to start is some quiet time with Him.
Please be in prayer with me about our doctor's appointment tomorrow.  Chris will not be going with me but my mother-in-law will be there with me.  We need answers. Pray for Gods discernment and direction for all involved.

Please Pray

Monday, when we had an appointment with our doctor she said, first of all, that they would call us.  Second of all, she said that if she went the route of using the cefotaxime that a PIC line would be put in.  I hadn't heard from them so I thought I would call the messaging service to see if lab work was in. There was a message that said that the "CD4" was 18, "which is low" she said, and reiterated that we want it to be 180 to be in remission.  I don't know why she called it CD4 and not CD-57.  More importantly, if that is our level then we have gone backwards and it is worse then when we first started treating this disease.  She then goes on to direct me to "continue the cefotaxime as an IM injection and continue the doxycycline". What? No mention of flagyl, the other antibiotic.  So, I am confused and frustrated, but still enjoying my IV free day :)

You are probably saying, "call them and get clarification". Yes, that is our first response as well. However, the problem is any time we have called to do anything other than make an appointment, we hit a brick wall.  If you want to speak to a nurse or any person in the office, they take your information and say they will call you back.....they have never called us back.  Thats if you are fortunate to get a warm body to answer the phone.  One time, Chris called and left a message on the message machine, someone called him back but then said they couldn't talk to him because he wasn't the patient.  So, they called me and when I asked for clarification I was told that if I had questions I needed to make an appointment. 

You might say, "so make an appointment"....yes, thats really our only option. Keep in mind that appointments are made for the next day and any appointment not on a Monday takes Chris from work and it is a pain to figure out what to do with the girls. I can't take them or I don't concentrate (if you're a mom you will some idea of what I am talking about) and honestly, neither does Chris because he's trying to help me out.  

Right before I was going to call her office, a nurse from Quality Infusion called to check on how the IV "yanking" went (my words, not hers :)  ).  I told her we did the dose first thing yesterday and then pulled the IV. She laughed.  I explained the "message" from the doctors office and she said "absolutely not. Do not do the injection. You tell them you can't". Its so nice to talk to someone who knows how you feel.  I explained that the telling them wasn't the problem, its getting a hot body on the phone to tell it to that was the problem. She agreed and encouraged me to make an appointment.

I called and explained that I either needed to speak to someone to get clarification on lab work or I needed to make an appointment for as soon as possible to get clarification on lab results and instruction left by Dr. Salvato on the messaging system. The lady said, "I can take your information and leave a message for someone to call you back or you can make an appointment". I explained that every time I have left a message requesting someone to call me back, no one ever did. She preceded to schedule an appointment and the earliest they can get us in is Tuesday at noon.

Good news is I am IV free till then but the bad news is our levels are lower and thats five days without IV medicine, the only medicine that has shown signs of working.  We could go ahead and do injections till Tuesday but then thats less medicine to use as IV and we lose 50% of the medicine each time we inject it.  

Please pray as we make arrangements to go Tuesday.  It is VBS week at church and so Chris is super busy and for him to get away during that time will be extremely difficult.  I would go by myself except that I need someone to go with me to be my brain since I don't remember well and I don't process what I hear well.  Even right now, if it weren't for Chris agreeing with me, I would be second guessing that I actually heard her say they would do the PIC line if she chose to use the Cefotaxime. I just listened to the message again and she doesn't say "cefotaxime"...she says some other medicine.  I have a made a list already of questions including asking about the ultra sound done on the gallbladder. It was never discussed with her and we left her office Monday completely forgetting to ask her for more clarification on that.

Till Tuesday, I will do my best to not dwell on this but enjoy the days I have no IV.  The only way I can put it is I feel like chains were taken off.  It feels good to be "free".  The girls are going to spend the night at their God Sister's place tonight and Chris and I are going to an Astros game with our church.  Then, tomorrow I get the opportunity to witness Chris help one of my best friends renew her vows with her husband.  No better weekend to be IV free.

Aw, the Joyous Sounds

It is a Wednesday night and I'm feeling so content as I hear a pool full of youth and watching my hubby do what he does best, hangin' and relatin' to them.  They had youth at church and then came over to the Saulnier Casa to swim. So cool.  This is what we love to do.  We love to host.  I'm not sure "entertain" is the right word. That word always make me think of fancy clothes, crystal dishes and expensive food.  But we love to have people over.  The teenagers made it home before Chris did. I was starting to wonder if they locked him up in a trunk or something.  It was so refreshing to have a house full of youth, hangin' out, talkin'.  I told Chris a week ago I thought it would be cool if every Sunday or every other Sunday after youth they come over and swim. And maybe every Thursday morning or afternoon or evening they would know its swim time at the Saulnier's. Or maybe both.
So, yesterday Chris asks me what I thought about the youth coming over tonight to swim. I laughed and said it was short notice but it would be cool.
I so wish I could be this "cool" youth pastors wife that dresses "cool" and always has the house clean and ready and always has snacks baked and ready, etc.  I had to laugh tonight as they come piling in and here I am in baggy sweats and a baggy t-shirt (because thats what I'm comfortable in and I've lost so much weight that how the clothes fit) with no make up (I only wear make up on Sunday mornings or special occasions anyway) and my hair was done by a 6 year old.  My mind just doesn't think about things any more so it never even occurred to me that they would see me when they came over to swim and that I should "dress more appropriately".  You know what? I may like this new mind because whatever the mind can't think of, it can't stress over either.  I did think earlier, however, that it would be nice if there were home made cookies for them. I may not be able to put out a spread for them and I felt only cookies was kind of "corney" but at least it was something.  So, after dinner tonight,  the young lady that helps me on Wednesday nights, while Chris is at youth, helped me bake chocolate chip and caramel cookies.  It was awesome and felt so good to be able to have something for them tonight.
Stuff like this is what I had hoped I could do when Chris took this position and I have been so frustrated that I couldn't do it, that I couldn't support Chris in this way and be this happy healthy hosting wife.  Hosting is our gift.  We just love to have people over, feed them something (Chris usually cooks something) and enjoy the company.  So, for a couple hours tonight I am super content, lovin' the sounds coming' from the house and yard.
It also helps knowing that in the morning I am going to do my last dose of IV meds and "yank" the IV out. We have not heard as of tonight how the labs turned out or what the doctor's decision is.  I honestly don't anticipate hearing this week. Therefore, I am excited at the thought that I could be IV free for three days.  Oh what freedom! Just to be able to get up and shower when I want to shower without relying on a single soul to wrap an arm or hand, or help me wash, put on deorderant, and get dressed.  In the last three months I feel I  have had a slight taste of what "getting old" might taste like and I have come to the conclusion that it has got to be the cruelest part of life when the number of people you rely on out numbers those that rely on you. *shudder* I don't look forward to it at all.  I don't think I will easily surrender to those days at all but will probably be a grumpy, grouchy, crotchety old lady.  May God kindly take me home before then for the sakes of others :)

Sometimes You Have to Just Laugh

We met with the doctor this morning.  Basically, we are on hold till blood work is back.  She mentioned again that our last CD-57 level was "pathetic".  She would like to see it be 70, 80 or even 100 she said before we stop the IV meds.  She mentioned that insurance usually doesn't approve more than 6 weeks of IV medication for Lyme.  We will have had 12 this Thursday.  She did say that if the CD-57 level is still low or more bands show up positive on the Lyme test that they can fight that and get more weeks approved for the IV med. Please keep in mind that this is our best defense against Lyme.  Its not easy, fun, or convenient to have an IV (especially midlines or peripherals) but its a temporary inconvenience vs. not having my life back and continuing to get worse.  Also keep in mind that most people that have had Lyme as long as I have had, or longer, are wheel chair bound, bed ridden, and needing 24 hour care.  I am so blessed that mine is not as severe and that God has allowed me to be well enough to take care of and enjoy my children as much as I have.  However, I know that without treatment I will continue to deteriate.  Therefore, for my family I will fight this with all I have and all God is willing to give me so that I can continue to be a woman, wife and mom as long as God alllows.

We were sitting in the exam room and I was compelled to pray as I have that last time we were there. I prayed again for clarity for the doctor and for me and for the Holy Spirit to sweep the building.  I found myself also praying that my body and my life is His and for Him to do with it as He chooses, as He wills.  I just get to be along for the journey and witness some of His handy work.

We also discussed the option that if we continue IV meds that a PIC line would be put in.  The veins in the arms are "failing" and peripheral is not an option (thank goodness).  Having a PIC line put in we were told would have to be put in at the hospital.  We brought up the fact that we have about 45 doses of Cefotaxime, the med we used for injections.  She said that if insurance does not approve further IV meds that we can still put in a PIC line and use the Cefotaxime.  This is good news as well since its medicine we already have and it won't go to waste (though we had looked into donating it to mission work in other countries) and it would further IV treatment, which is our best defense, especially if levels are still low.  

So, we wait.  We are on hold.  I sometimes feel I am always "on hold".  I don't "wait" well at all. I tend to find myself trying to "figure"it out so I can plan and prepare.  But, what I am learning is that I am supposed to be on hold and am supposed to wait.....wait on God and hold on to Him and go where He directs me to go and do.  My mind set is so different from where I was a year ago...even 6 months ago...okay, even 3 months ago.  I am continually blown away and am learning and growing in my relationship and love for God.

We left the doctor office and went down to Quality Infusion to have blood drawn.  Keep in mind I saw a nurse yesterday and the day before for IV's.  They don't draw blood from the midlines or the peripheral IV's. However, if we had a PIC line they could draw blood and do infusions through it.  I mentioned to the nurse that the perpheral was pretty uncomfortable but it was working.  She said its because of where it is but that she thought it should last till Thursday, the last dose. She drew blood in the right arm where the midline use to be. My forearms and hands are pretty much shot. She got it on the first try and it was actually pretty painless and easy today.  We left and walked out to the car. We were sitting in the car trying to decide where to grab breakfast and where to go to get my glasses. I saw the nurse walk out of the building and I thought, "I bet she is looking for us. We probably forgot to sign something".  Sure enough, I sat there and watched her pull out her phone and call me, only it wasn't for paperwork.  She forgot two tests and needed me to come back in to give them more blood.  I just started to laugh.  Unbelievable! I truly do feel a person can only take so much of something whether its needle sticks for blood and IV's or take so many pills, or eat so much of a diet or whatever.  There is a human level. However, I know with God that human level is extended. We went in and she stuck me again and took two more vials of blood.  I told Chris I was starting to feel like human pin cushion.  You have to just laugh or you will just go crazy. 

We decided to go to the mall to look for glasses and grab lunch.  I have been out of the glasses loop for over 10 years. It was weird but I know they are needed. I did pick out a pair of sunglasses that have a little bling bling.  The girls should like them :)

It felt so good to be out.  Chris and I pointed out that before the diagnosis we rarely went on dates. We rarely had time out together. But since the diagnosis we have had DD's, or doctor dates. Not exactly my idea of a date but it is time alone with my hubby.  If we are alone in the car we call it a date.  It just felt good to feel half decent today and be out.

Where were the girls, you ask? A sweet lady from church came to the house to spend the morning with them and another sweet lady called them and took them out to lunch.  The girls got to go swimming this morning which they can't do with just me home. They are crashed and down for naps and I am hanging out on the bed feeling wiped out from the morning.  It doesn't take much.

So, we wait for blood work to come back and wait for the doctor to call us. She was very specific that SHE would call us.  She said the results should be in by the end of the week.  I honestly don't expect a call this week but if she does I don't expect anything to be done till the first of next week if we are going to do anything at all.  Therefore, I have been given permission to pull the IV out Thursday after the final dose.  That means, this weekend I will most likely be IV free. As much as I want to fight this and keep the IV meds flowing to kill the little boogers, I am looking forward to being "free".  I do find, though, that I have to remind myself that no IV meds doesn't mean we are "fixed" and not sick any more and that I still get tired very easily. But, we are moving in the right direction....God's direction.  And if His direction is to have a free weekend, a blessed weekend, than I will take it gladly and rejoice. And if it winds up not being a "free weekend" then I will rejoice in that as well....I just may not go swimming :)

A day spent with God in my life is a day worth rejoicing.  Some days are a little easier and there's more energy to do it with but the blessing is the same. 

Another Herxhemier Reaction

The last time I wrote was Friday and I was having a pretty good day...as good as my "good" days go. I was hoping it meant a good weekend. I had one of those several weekends ago. They are pretty nice.  Unfortunately, that is not how this weekend went.  Saturday, I got up and took the girls to Becka's gymnastics and just felt really crummy. I didn't realize just how crummy till we were sitting there watching Becka. I was super grumpy and edgy which told me something was up.  Becka's coach even asked me if I was okay.  After catching a glimpse of my face in the bathroom mirror while I was washing my hands I then understood why she asked.

We got home and I looked at Chris and said I needed to eat and do my IV and go to bed.  I ate lunch in bed and slept as the IV went and I was in bed till late that afternoon when we had to get up and get ready for a graduation party.  I told Chris I didn't feel good and wasn't sure I should go but I wanted to go. The daughter of the couple that led our Nearly/Newly Wed class over 13 years ago, graduated from high school.  They are such dear friends and mean so much to us I wanted to show our support and excitement for them.  We went and had a great time. So good to see them again!  There are people in your life that when you see them its just like a breath of fresh air. As soon as we hit the car I melted into nothingness.  In some ways its good to get out because it takes my mind off of how I feel but in other ways its bad because it completely wipes me out, and I was already feeling bad.

Sunday saw me in bed all day.  Chris and the girls left in the morning and I spent some time with God and then just couldn't keep my head up any longer. I woke up to Chris home with the girls and Grammy and Bobo at the house with Dozier's BBQ.  I did my IV, ate some brisket and went back to bed. I honestly can't say I remember last night at all at the moment.

With Saturday and Sunday going the way they did I knew today would be either worse or better.  Chris normally has Mondays off but today he was in his first golf tournament playing with the other pastors so I knew he would be gone all day.  I  texted last night a young girl comes and helps me out Wednesday nights while Chris is at church and she couldn't help me today.  So, I texted another lady that has blessed us so much and asked if she could come help me with the IV (the peripherals don't have an extension so I can't do the flushes or hook up the IV) and with lunch. I am so glad I did because I felt worse today.

Barely being able to stand being vertical, I got the girls breakfast and went back to bed. The girls brought in games and we played board games till she arrived.  She brought some fresh squash from her garden and sauted it in some butter and I had that with my usual hamburger patty.  She hooked me up and as soon as lunch was down I was back in bed.  She stayed long enough to see the girls down for a nap.  I couldn't not have done today and be happy about it without her here today. 

I don't usually feel this bad all the time.  I usually feel crummy and lack energy most of the time. But back at the last 3 days got me thinking. I grabbed my calendar and looked at when the first herxheimer reaction was.  It was exactly 8 weeks ago.  We know 4 weeks from the first weekend we probably had another herx and inbetween those there were single days that found me in bed.  There is a definite pattern.  In Dr. Burrascano's paper he mentions there will be a cyclic pattern of the herxheimer reaction with each one becoming less and less severe.  Nothing has been as bad as the first herxheimer and even as bad as it was, its not near what I have read about other people's herxheimer reactions.  Either I am a strong person or I am a blessed woman.  I believe it to be the latter of the two.

So, putting the pattern in combination with the symptoms (extreme nausea, headache, aches and hurting in key area....my key areas, legs that are wobbly weak as if they won't hold me up, no appetite, and a complete inept feeling of being vertical) convinces me  this is a herxheimer reaction.  As I layed in bed this afternoon, frustrated that I can't sleep (another symptom) I thanked God that I felt bad.  I know to most that won't make since but its a sign that the bacteria is dying...not me thanking God but that I feel this bad.  And as I type this I had the thought that I/we should be thanking God for the "rough" times we have because it means God is at work in our lives.  I have read in my Lyme books that if you are feeling better or worse that its a good thing because it means the treatment is working.  Isn't that true for our walk with God?  If there is improvement (in the amount/quality of time we spend with God which will improve our thoughts, walk and talk) that is good and if there are struggles that is good to because its through the struggles that you know God hasn't left your side but He is refining you.  If you're not improving and you aren't going through stuggles then you are staying the same and that isn't good because none of us has reached the point where we don't need help and improvement any longer. Again, if you don't have a relationship with God this won't make sense but if you do then you probably grasp what I am trying to say.

Since I cheated on my diet for my birthday, the food temptings have been horrible.  It is mentally exhausting as I play over in my head many, many times a day why or why I shouldn't have something I'm not supposed to have.  Again, it can be symbolic of other temptations in our lives....its just my strongest ones are food related right now :)  Its amazing how we can justify and talk ourselves into seeing it in such a way that we convince ourselves that something that really isn't good for us really is good for us. Okay, so I have way too much time on my hands to think.  I have always been philosophical and analytical compliments of my Dad :)  

Though this herxheimer reaction is a good thing it does have its costs especially this one.  Maddie starts a dance camp tomorrow and I will miss it.  Grammy is going to take her and I am so sad that I won't be there.  Its stuff like this that can bum me out and make me feel even more like a bump on a log.  I live to see my girls do their thing.  I will not do other things just so I have the energy to take them to their one activity each.  I know she is in great hands. I just wanted to be a part of her first day of a dance camp at a new dance place.  She is so excited!  

Speaking of excited....last week I forgot to mention that with the midline coming out and a peripheral being put in top of the left hand, I got to do the girls hair for the first time in almost 3 months...not to mention my own.  It only lasted for 2 days before the IV was switched to the right wrist and made more difficult to do, but it was so cool.  The hands are so weak and they cramped up braiding Becka's pigtails so Maddie only got regular pigtails  but the joy I felt doing my girls hair was priceless.

I am supposed to go tomorrow and have the IV switched out again. I am hoping it doesn't take 4 pricks to get one to work and am hoping that the next one goes in a spot that allows me to braid some more piggies.  This time next week we will meet with the Lyme doctor and hopefully get some answers on the IV.  At this point I still feel it could any direction.  For now, I am thankful for the little things and am still taking it one day at a time.

IV Switched Out

Went this morning to switch out the peripheral IV that was put in after a visit to the ER ended in the midline being pulled Tuesday afternoon.  The peripheral IV is what you would get if you were in the hospital.  It is not made to last for long periods of time like a midline or PIC/Central line is.  Therefore, it has to be taken out and a new one put in every 3-4 days.  Not exactly my idea of fun but if it keeps the meds flowing than its what we have to do.
All week I was looking forward to today because one of my best friends called and wanted to do lunch today.  So, I figured I would get the IV switched out and then head to lunch. It helped the week go by, giving me something to look forward to. I am so glad lunch with her and her daughter (my God Daughter) was planned because its what got me through the IV's being switched out.  It took Quality Infusion 4 tries to get the IV in this morning. Bless their hearts.  There were two of them and the first gave up after not getting it in the first 3 times.  The other one got it in but if you could have seen her dig as she pushed it in and its not in a friendly place.  So, I looked like I had a whole different disease when I left there with taped gauze in four different places on my two arms (one being where the previous IV was).  The IV today is in the right arm right at the wrist on the side below the thumb.  Assuming all goes well I am scheduled to have it changed out next Tuesday.  So, twice a week a new IV...hhhhmmmm times 4 pricks....really not my idea of a fun time but I got through it today knowing I was having lunch with some sweet friends.
Honestly, the first person that tried was really kicking himself for not getting in one shot.  I can't blame him at all.  I have seen that girl that got it in prick a lady 3 times and the lady walked out before she could try a 4th time.  Mornings are not a good time for me to give blood or be poked.  My blood pressure runs pretty low as it is, but mornings it runs even lower.  I am not fast at getting a lot of fluids in me if I have an appointment first thing in the morning and so the veins don't usually cooperate. That coupled  with my good vein having been used up with the midline, they aren't ready to poke there again and its  not the most comfortable place to put a peripheral IV you need to walk around with (it wasn't comfortable as a midline either but you do what you have to do).
Having gone through 4 pricks this morning I started asking questions.  I asked them if they had the radiologists final report from the ultrasound done in the ER Tuesday. They went next door and had them print a copy.  It showed "calcification" either in the line or the vein..I don't remember. The guy when he was reading it made it sound like it was no big deal. I asked if the midline was pulled for something small and not serious but the girl said that calcification in the line/vein was not good that when I flushed it could cause it to go into my system which would not be good.  I then asked them what the process was  when midlines are pulled..i.e. the doctor sees the report and makes a decision or what.  They did not know what happens. They asked how long I had to go with treatment and I said we had 2 more weeks one current order and the guys eyes got big and pointed out the obvious...it would be a long 2 weeks if we are switching out IV twice a week and things go like they did today.  Tuesday, the nurse mentioned that the peripherals are obviously cheaper but the two today somewhat disagreed because the peripherals are the least stable and therefore may need to be switched out more than 3-4 days.  They explained that a PIC/Central line is the most stable and can last up to a year. It still requires the weekly dressing changes but are the most stable.  I was hoping they would say, "hey, let us call up to Dr. Salvato's office and see what she wants to do" but they didn't.
I'm not sure there is a whole lot I can do. When we call we very rarely get a warm body on the other end.  The last time I called with questions I was told to make an appointment that questions weren't answered over the phone.  We have an appointment with her a week from Monday, the 14th and I'm pretty sure calling today I wouldn't get anything any earlier, particularly something where Chris could go without having to take off of work. We try very hard to avoid that and to guard that time. However, the other situation is our appointment is the Monday of the last week of IV medication on the current order.  If her track record serves her well, she will want another Lyme Test and CD-57 test done before making a decision and those take time to come back.  So, it is very likely we will be switching out IV's for 2-3 more weeks before hearing what her decision is regarding the IV treatments.
The good news is, other than the discomfort in midsection today, it has been one of the better days. I am wiped out from all the excitement this morning, but I am hoping this is a sign that the weekend will be on the better side rather than the yucky side. Though it wipes me out, it does me a world of good to get out of the house.
I should be napping right now rather than typing but wanted to post the information. Now that I have yawned 5 times in the last 30 seconds, I am going to close it down.  Have a great weekend!

Just Wanted You To Know

Last night we got home from the ER (after stopping for chips, queso, and fajitas...sorry but it was a chips/queso kind of day) and the IV they put in my left hand was really hurting. I could barely move the hand without it screaming at me and I couldn't find a comfortable position.  I was really concerned that it hurt so badly.  I typed my last post one handed while I finished the IV I had started earlier yesterday (might have been a no no).  What little was left made me feel really weird. My chest was tight and taking deep breaths felt like I was breathing outside in subzero weather...if that makes sense.  I did not like how it felt at all and it was a couple hours after finishing the IV that I felt that way.  The good news is, though, that Chris was flushing it and it was excruciating.  On top of the IV is the clear tape that keeps it on/in place and then they put some of that stuff that looks like sticky ace bandage to help the tubing not flop around. This IV does not have an extension like the midline did so I can't flush or hook up my own IV now. Chris undid the sticky ace bandage and the relief I felt was incredible!  I left it off for a while as we watched a show on the laptop in bed (one of our favorite things to do).  He rewrapped it before bedtime and it is still doing great.
I was less grumpy today as I realized that I had use of both my hands. YIPPEE!!! I haven't been able to use both hands for almost 3 months.  It was weird and I had to think twice when I would go to use the right arm..."No you can't," "yes you can"...and it felt weird lifting that arm above my head like when I was washing my hair. The right arm has not been above my head for almost 3 months.  It is very weak and their is some discomfort in the elbow and shoulder when I stretch and use it beyond what its been alllowed to be used but it was so good for the pyschie to beable to use both hands.  I had to hold myself back this morning after realizing I had use of both hands because I was ready to take my house back.  I may have both hands for now, but I definitely don't have the energy.  I had to remind myself that just because the midline was out and I had use of both hands, it didn't mean I could anything I wanted and it didn't mean I had energy and was well.  But oh the joy felt in being able to do a little more then I have been the last 3 months.  I needed that today.  It so helped with the grumpiness.
Some things you can be in prayer about:
* Pray for the doctors wisdom and discernment as she decides which way to go with treatment (i.e. another midline, IV's for the next 2 1/2 weeks, neither, or something else).
* Please pray for some things the body is having difficulty with.  We are still seeing the medicine effecting the gallbladder and other functions and the midsection can be pretty uncomfortable.  There is an increase in another symptom where if I talk for any amount of time my ears feel like they have fluid in them and I feel I am talking in a tunnel.  We will ask her about this at our next visit.
* Please pray for the family.  I am difinitely seeing the effects of having a long term sick momma and wife on them.
Thanks so much for your prayers.  I know its the prayers of the many praying that have gotten us to where we are now.  Even though I am sick and fighting a nasty disease and things aren't what I had hoped for, and there are days when I am grumpy, I know God has blessed me through this disease.  If you have never experienced something life altering and still feel God's hands on you and He brings you to where you are satisfied with whatever comes your way, you would have a difficult time understanding.  I know I did.  Women at bible study would talk about being in the midst of some of life's nastiest things and at the same time talk about this passion and new love they felt for God.  I remember thinking, "I know God but I don't feel a huge passion and I don't think I am in love with God".  In some ways it bothered me that I didn't Love God more.  There were times I questioned my relationship but always came back to what I knew was truth, Him.  But God has shown me His hand so vividly and I am satisfied with whatever comes my way.  It sometimes catches me off guard (like the two ER visits) and I get unsettled with where He has me and I get grumpy, but it just reminds me how human I am and how big He is and there is such a comfort in knowing He has everything in the palm of His hand and nothing happens without it being for His purpose.  There is a reason for what we even consider the smallest or most trivial things.  They aren't small and trivial to Him who has a bigger picture and I just get to play a small part in it.
It blows my mind now....like the ladies I once heard in bible study.  I have noticed in the last couple days that my trust is challenged and I have become aware that sometime I lay more trust in someone else...my husband and when I sense him stressed or see the effects on him, my ground begins to shake and I begin to feel its more then I can bare.  But I am learning to turn to Him and hand Chris up to Him realizing that Chris is human and God is at work in his life as well.
I am taking it day by day...and sometimes its minute by minute but my soul is at rest with God. So difficult to express in words.  You won't get it till you are there yourself and then you say, "I get it!!" and you can't get there by any other means but with and through Him.  And then you will say, "WOW!" and "Its incredible!!" and you will never want to go back.

Midline Yanked

I got up this morning and it wasn't long before I was grumpy. I'm not completely sure (I have my theories) what is going on. At lunch time Chris hooked up the IV pole. We had noticed that since the last dressing change the infusions were acting different.  They were taking twice as long. Up till today we thought maybe it was something we were doing (i.e. trying to lay down and rest during infusion) but I did notice a kink in part of the catheter between the stat lock and where it goes into the arm.  So, I tried really hard to keep the arm really straight during infusion but it was still take longer for it to complete (1 1/2 hours turned into 3-4 hours).  So, today we tried to keep it as normal as we could.  Chris did say when he was flushing it before hooking it to the IV bag that it was more difficult to flush. I didn't want to hear this because I knew that meant this midline was coming to an end and we didn't know what that would mean.
As soon as Chris got the Iv flowing my arm began to hurt and it hurt pretty good and I felt weird physically as if the medicine was going somewhere it wasn't supposed to.  I sat there thinking that the pain wasn't excruciating (nothing has come close to the day with the gallbladder) but the thought of enduring it for 3 or more hours was daunting and then to do it again tomorrow?  I have a high tolerance of pain but I don't tolerate long periods of pain. The pain kept going with some moments worse then others and some moments better but hurting all the same. We put a call into Quality Infusion to see if it needed to be checked (duh! We knew what they would say). Once again, Becka had gymnastics so we were headed that way anyway but if they were going to pull it I didn't know what it would entail and I wanted to be sure I had Maddie covered, and Becka covered if things for some reason went too long.  Chris made a call and arranged for Maddie to go hang with one of the sweet ladies from church.  I really felt I needed (and wanted) someone to come with me in case I needed them.  Again, I like the extra brain because mine doesn't work in processing and remembering. But, feeling like it was too much of a hassle calling people and at such short notice, coupled with needing so much help lately and getting help at the house and in meals, the last thing I wanted was to bother another soul to come help me. So, I convinved myself I would be fine and that they would probably just do a dressing change and then I would be back at gymnastics in no time watching Becka. I sat on the floor hoping that gravity would help it flow faster but it didn't. I was hooked up 2 1/2 hours before I needed to disconnect it to leave. My arm quit hurting after I disconnected the IV.
I dropped Maddie and Becka off at there prospective places and then arrived at Quality Infusion to find only one chair left. I was so glad I didn't have Maddie because when that place is full it becomes no place for her both in seats and in what they usually have on the TV, etc. Keep in mind that I am fortunate enough to do my infusions in the comfort of my home. Some people come in and are there for 3-6 hour infusions. I was asked where it was hurting, I pointed to my upper arm and the nurse wrinkled up her nose as if to say that it wasn't good.  She agreed that there was a kink and that the kink could have been why it was taking infusions so long, but she said that didn't explain the pain. She called up to Dr. Salvato's office (its amazing how fast they can get a response from her and it takes us weeks) and they told her to take me to the ER and have it checked out. You are kidding me, right? I was trying to stay out of the ER. I was feeling stupid for even coming. I didn't want to go through a whole ordeal...I just wanted it declared good to go, change the dressing fixing the kink, and then send me on my way.
Nope! Didn't happen.  So, I get to call Chris and tell where I am.
They initially were going to pull out the midline to examine the arm/vein. I questioned if this was truly necessary to check the vein.  The doctor made a call. They ran blood work to check for if the blood has fibrin in it which is a clotting material.  Their concern is that there was is a clot in the line/vein. Then the next thing I know take me a room to do an ultrasound on the arm. Yeah! They didn't take the midline out. I figured we were good to go. The ultrasound took an hour! At first it felt pretty routine and he said he was almost done. Then, I noticed he kept going over the same area and I was in there for quite a while. When he was done he said that there were two areas that were inconsistent but he couldn't tell what it was. Basically, hewould leave it to the radiologist. He went out to the ER doctor, he was on the phone and not five minutes later I'm told they are pulling the midline out. OH Man!!
So, they did. It was painless and totally weird watching this foot long catheter just slide out. They put in a peripheral IV in my left hand that will have to be changed out every 4-5 days for the remaining 2 1/2 weeks we have on the current medication order. That is if Dr. Salvato doesn't prescribe another midline, but from the sounds of things, with us close to the end of this order, she won't unless she prescribes another order.  She may see the radiologist report and go either way. We may meet with her on the 14th and she could go either way.
So, I exchanged the midline in the right arm for a peripheral in the left hand (and this was after they drew blood for lab work from the left hand).  My body is so confused. I have trained my brain not to use my right arm so I go to use the left and it hurts so I go to use the right and there is gauze that won't let it bend so it remembers its not supposed to be in service, but now it is. I have typed this with only the right arm because to remotely move the left hand hurts.  I can tolerate the pain but not for days or weeks. The nurse honestly felt I would be back in before Friday needing a new one.  There is a part of me that feels I failed having to have the midline pulled.  It truly is my best defense and I don't feel we have seen enough change before getting off of it. But, this is where trust comes in. Trust the doctors that they know what they are doing but most importantly trust God that He is in control of everything.  While I was at the ER and having the ultrasound done I was praying (mainly for Chris but for the doctors) and in my head rang, "His eye is on the sparrow, and I know He watches me." In that simple truth I rest and find strength.