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.
