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.