Another IV...and Another!

There are so many emotions flooding me right now.  I know I won't be able to capture all of them but I will try.

Last week was trying with me down till Thursday with what we think was another herxheimer reaction.  Wednesday night I told Chris I needed to turn a corner Thursday. We prayed right there and prayed that I would turn a corner on Thursday and move past this herx. It wasn't the worst herx we have had but it was just different and it lasted the longest. 6 days in bed was driving me crazy.  The nausea was pretty bad but no headaches this time around which was a blessing.  I also didn't have quite the pain that accompanied the other herx reactions.  It just dragged out. Thursday I turned the corner but was so weak but I was glad I didn't have the nausea.  Friday was a little better than Tuesday and I knew we were coming out of it.  I have had bouts of nausea since Friday off and on that I'm not sure where its coming from.  I have also noticed some appetite besides the strong temptations I've been having.  Not sure how to describe the appetite..just noticed it was different and to me a good different.

Friday we got out to the library and ran into some friends there. It was so good to talk and watch our kids play and hang out together.  Her kids are some of the sweetest and most well mannered kids I know.  They are just really sweet.  When we were there I snagged the IV twice on the book bag and I knew I was probably pushing my limits on being there and carrying the heavy book bag but it felt good to be out and talk with another adult. When we got home I had Becka grab some books and do "nap" time on my bed with me while I checked/returned emails and made a phone call.  It was pretty cool to have her there with me, the two of us "resting" together.  She has helped me quite a bit with my IV.  She can't hook it up but she likes to wipe it with the alcohol pad and push the syringe when I flush and she loves to push my IV pole if I go any where in the house.  She loves to help!  When we detached the IV and flushed it I noticed it was red and it had been uncomfortable during the infusion.  I knew I needed to call. Sure enough, we were told to pull it and come in the next morning (Saturday) and have another one put in.  I always question, "is this really as bad as I think it is?" or "maybe it will get better". We were really hoping for it to make it to Monday when we would be there for the doctors appointment.

Chris got home from work and we were a whirlwind getting out the door to have dinner with our old neighbors.  We had such a great time with them.  Times like that wear me out but are so good for me emotionally.  It gets me out of the house (and the girls) and gets my mind off of how I feel. I feel "normal" temporarily.  We got home late that night and Chris pulled the IV out.  It was weird going to bed without an IV in one of the arms. I have had one in one of the arms since March 25th (that means having help with showers, not having the full use of both hands/arms since then, etc...blows my mind).

I was supposed to meet one of the nurses at 10:30 so I went to watch Becka at gymnastics for a while before driving over to get the IV. Her coached immediately grabbed me and slipped me $5 and asked me to go get ice cream for the girls to have a little celebration.  So, thanks to Yelp on my phone I found the nearest HEB and grabbed ice cream, brownies and spoons and took it back.  I remember thinking, "I have a little energy this morning". It felt so good to be able to do something for someone and just go do.  I dropped it off and drove over to get the IV.  What should have taken 15 minutes took 40 minutes and 4 sticks.  The third one sent me through the roof as it felt like she was sticking the needle through the top and coming out the bottom of my left hand.  I wasn't sure how much more I could endure.  No IV means no medicine which means not getting better which means I need to endure till they get a vein.  Grrrr.  I had made sure I had more than 2 bottles of water that morning and it showed in my very frequent stops to the little girls room.  As she went for the right hand for the second time I looked up and just kept saying, "please, please, please" and she got it.  It was in an awkward spot but she got it.  She taped it down and I was on my way.  I got back just in time to pick Becka up.  I never want my kiddos waiting for me to pick them up.  I will do everything in my power not to have that happen.

We got home and within about 15 minutes of being home I "crashed".  Got real edgy, grumpy and I start doing circles in the house (usually the kitchen). I sat down feeling useless and wanting to do more and then went and layed down while Chris was pulling lunch together. I then literally crashed. Chris woke me up to eat and hook up the IV.  I ate and went back to bed with the IV pole.  Chris woke me up around 5 saying Grammy and Bobo wanted to meet for dinner.   I didn't feel good at all but we went.  Felt a little better after some food but remained edgy and grumpy.  When I am like that its just best for everyone for me to go to bed and be left alone.

I got up today, not knowing how I would feel.  I told myself if I'm not nauseated I'm going to church.  I have felt pretty good today. No nausea till we got home from having lunch with a couple from church and two sweet ladies who work with kids in an extremely rough school district.  They are covenant partners with our church.  It was so good to hear them talk and share.  I felt a passion stir inside as ideas and a longing to help them in some capacity went through my body, quickly followed by a "stuck" feeling.  I am so ready to be "set free" and go do. To serve and to help. I am so full of others serving us and helping us that I am over flowing and wanting so badly to be on the serving end instead of the receiving end.  There is a passion deep inside that I know God will use some day and I know I am "down" for a reason and I need to wait on Him but I am anxious to GO! I feel like a football player begging to go out and play the game going on out in the field but I am benched.  I shared that with Chris and he said, "so carve my name in a heart while you are there".  :)  I know without a doubt that there are reasons I have Lyme and that I am on the bench and I try to rest in that.  

I can't begin to tell you how good it felt to be in church this morning. I had a quiet time before church and prayed that I would focus only on Him and nothing else this morning at church and He helped me do just that.  It felt good to go and worship my God that has been so gracious to me and the one that holds me up and carries me through.  Our pastor gave us a challenge this morning (we get a new one every month having to do with WORD, FAMILY, and SERVE). Todays challenge was to serve annomonously in some way. He said when we did to write it down on a piece of paper without our names and give it to him in some way.  I thought, "hhhmmm, I think I will give him lots of little pieces of paper with all the times people have helped us in the last couple months" right down to each lady that caught me at church today and said they pray for me. I can only hope that I will be a blessing to all those that have blessed us. I know those sweet ladies won't write it down that they helped us and I want the pastor to know how God has used them. It just felt so good to be at church and feeling decent. 

We got home from church and lunch out and I started feeling nauseated.  Chris mixed up the IV med and went to flush my IV and I about hit the roof.  It hurt so bad.  I'm thinking, "now what?" If the flushing won't go in without pain then the medicine won't either. We called and sure enough, we were told to pull the IV and that the nurse would be out to put another one in.  Now I'm feeling like I'm reaching a limit.  I have got to get through this.  It has been challenging waiting for tomorrow when we see the doctor.  We have been on hold, waiting to see what she decides.  On hold...title of my last couple months. I don't do well on hold. I want to get through and move on.  I am hoping the nurse can get todays IV in on the first try and we don't have to go through too many sticks.  One of the things they said the last time it took 4 times was that the veins get fragile when they are pricked at a lot.  I just got to hold on.  I just have to endure. As I type this I am listening to my playlist and hearing these words:

Jesus, hold me now
I need to feel You in this place
To know You’re by my side
And hear Your voice tonight
Jesus, hold me now
I long for Your embrace
I’m beat and broken down
I can’t find my way out
Jesus, hold me now

I stopped to look what the song was and find the lyrics. The weird thing is I went to look up the lyrics and was amazed that the I never heard the verses..just the chorus and I don't hear the above words as a plea but more like a body responding to a refreshing pool on a hot summer day. I am still human and will have moments when I feel I am going to go over the cliff but I am at such peace knowing I won't fall and if I do He will catch me..either way I am going to make it....somewhere because of whose hands I am in and Who is in control. 

The nurse has come and gone. New IV in crook of left arm.  It isn't the most comfortable position but she got it in on the first try with a little persistence (I call it fishin'). I tried hooking it up to the medicine but can't do it with how its wrapped so I will wait for Chris (bless his heart). 

So, I have a question....why is that you don't notice that something in your house royally stinks until a "guest" walks in the door?  Seriously, something wreaks.  I'm pretty sure its the trash (sometimes its the garbage disposal) but I was immuned to it till a guest walked in (I'm sure there is a sermon in this somewhere).  Then its too late.  Nothing like being "real" with someone. I even had the horrible thought as she has a needle going into my arm...what if she calls CPS saying the house was unlivable for the kids?  Silly, yes I know, but I'm just being real with the thoughts that go through my head. I was horribly embarrassed!!

I am on hold again (not that I was ever off hold) till tomorrow when we see the doctor.

Please, please pray for this appointment and the outcome and answers that will come out of it tomorrow.  Our last dose of the IV med (on the current doctor order) is this Thursday.  We may not have any answers tomorrow. This week is labs week and she will most likely run another Lyme test and CD-57 test in addition, which will take over a week to get back.  She will most likely, based on her track record, not make any final decisions until she gets those back. But I am hoping we will get some idea on where treatment will go.  I haven't a clue which way she will go, not even a hunch or feeling or anything.  I have rolled it through my mind so many times trying to figure it out so I can plan or prepare for what ever may come, and I don't have a clue.  She wasn't happy with the CD-57 level last time as if she had hoped it would be higher before taking me off of the IV meds. However, we will have completed 3 months of IV meds. And, she was holding the gallbladder off, so to say, so she may stop the IV meds.  Someone asked me what I hoped would happen and I said that we do whatever continues to kill the bacteria and fights this disease. If its IV meds then we will need to discuss using something other than a peripheral IV.  The nurse today said she's afraid they are "getting tired". I was encouraged yesterday, by the nurse putting in the IV, to discuss with the doctor a PIC line and that I can refuse a midline.  I feel tomorrow will be a major turning point what ever comes.  I had hoped to see more improvement before getting off the IV meds, my best defense.  There is such a fear (not sure thats the word) of going back or returning or getting off the meds and getting worse.  

So please pray for God's will to be done.  No matter the outcome with the treatment plan or my health, I know I will get through it with God and it will be what He wants it to be. Again, it doesn't mean I won't have moments when I feel I can't take any more because I am human. But please know that on the other side of these words (and the really bad, dry humor that probably doesn't come out at all), I am enduring because of my God and the peace I have knowing Him, knowing He is in control and its all for His purpose. Please pray for His strength not only for me but for my family and all those who help us.