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 :)
