Update on IV

I feel I should have written sooner to update people on the IV situation but frankly, just haven't felt like "blogging".  If not moved to blog I don't even if there is information to update.  The last week has been trying, and marked with frustration and relearning things and I hate re-doing anything...literally.
Tuesday afternoon another midline was put in.  I don't understand why the PICC didn't work and it was extremely difficult to pysche myself out to put it in only for it to be pulled barely 48 hours later. It was supposed to be the best way to go but for reasons only God knows, my body rejected it and didn't like it....okay, the heart didn't like it.  After the heart episode not even 20 minutes after the first dose with the PICC, I should have gone back but didn't out of fear they would pull it or the medicine.  I am used to "putting up with" discomforts and figured this was just another bump to tolerate....and yet I think I knew something wasn't right...I just didn't want to deal with it and hoped it would go away.  It didn't.
Tuesday, it took them two tries to put the midline in.  I pushed to have it put in the left arm but she completely dislikes those veins.  She tried the first time to put it in the same spot as the first midline but couldn't get more then 5 cm of the catheter in. Keep in mind that the catheter goes from the elbow, up the arm past the shoulder towards the chest area. She pulled it out and tried a different area with success.  Each time having to give me a shot of lidocaine.  I didn't mind needles going into treatment. I loathe them now! And cringe when one is near.
The new midline is in a better spot. I can bend (though I'm not supposed to) the arm without a lot of discomfort. We are back to being one handed/armed since I'm no supposed to use that arm or hand, bend it, do any repetitive motions or raise it above my head.  I'm back to assisted showers, and needing assistance getting dressed or undressed.  I really wasn't anticipating having to get used to all this again but the first two days have been full of anger and frustration, just like they were with the first midline when God was teaching me to recognize I couldn't do everything myself and needed help.  Did I not learn that lesson?  Aw, but this time it only took 2 days instead of 2 weeks to recognize something is out of synch and I need help.  The problem is, I need the help, but am tired of needing the help.  Yesterday, there was a sweet lady from church over to help me.  Emotionally, all morning, I bounced back and forth between being embarrassed that I needed help and wanting to help her help me, not content with where God has me....again.  It is a tad more challenging this time because I am able to bend the arm more and so, if no one is around it is very difficult not to be doing things but then I know that each time I use that arm/hand I am compromising how long the midline lasts and therefore, compromising the treatment.  I am emotionally drained by 10:30.  I found myself fighting myself all day long on top of two days where nothing worked like it was supposed to (or the way I thought it should :-)  ). Isn't it bad enough that I don't work like I should?  The last two days one of my girls has been challenging the boundaries and yesterday I put my foot down. Chris and I believe in consistency in our discipline of the girls. Our boundaries and expectations have remained the same but it has been challenging for me (and us) to remain consistent in how we respond due to me not feeling well and the number of people that have been a part of our lives lately.  Its very frustrating for me to see behavior going on that we don't feel is acceptable and not be able to do a whole lot about it.  Yesterday, the big picture scared me more than how I felt and I put my foot down but with all the emotional fighting, and then the constant struggle with the girls to direct appropriate behavior, I was spent.  Yesterday afternoon I lost it with both of them and yelled.  This is when I know something isn't right and something needs to change, and it usually has to do with me....gggrrr!  I went to bed last night feeling like the worst mom in the world and feeling the weight of what this disease is doing to my family.  When we first became parents I had "expectations" of how I thought things would go, and how we would parent, etc.  Parenting out of a disease was never part of my plan.  Not even on the radar.  I despise it!  So, then we are back to learning to be content with where God has me again.
Another thing that made the last two days very difficult was to see a decline in my mental capabilities.  I knew my short term memory wasn't good, and some long term memory gone, and I knew I was having trouble with processing. But yesterday I realized its worse then that.  Chris usually comes home for lunch and "hooks me up"...to the IV.  The IV med we are on right now requires more steps to get it ready. Yesterday, the lady at the house helped me and I am so glad she did but in the process I realized just how absent minded I am.  Wiping off bottles with alcohol is one thing (totally forgot but she caught it) but she left while we were eating lunch and I looked up to realize the IV wasn't flowing...never had.  I got a little flustered, feeling limited being one handed/armed and tied to a pole.  After about 10 minutes of trying to figure out why it wasn't working (we have had faulty tubing before) I realized I didn't flush the line before hooking the IV up.  Just as I verbalized my realization, so did Becka.  Flushing the line before hooking it up has always been done. We are talking about over 3 months of doing this every day.  It should have been a no brainer. Standard routine. But even routine is subject to being eaten by little lyme colored bacteria.
This isn't the first instance of "cluelessness" but this was the worst with possibly the worse consequence. Wednesday, I got to 3:00 in the afternoon before I realized I hadn't eaten breakfast, or lunch and hadn't taken my medication that morning.  I didn't have a helper that day.  Its like its all I can do to get the girls taken care of that I am clueless about myself.  However, Becka was  the one who came up with lunch Wednesday.  I was in a "tailspin" (this is what I am termed it as when I am faced with a decision and I go round and round trying to make one and can't) when I needed to feed them lunch but we were out of bread and milk and other things, and the pantry and kitchen were a mess because we gutted it out after realizing mice have had a party in it (Chris has caught two of them to date), and I couldn't figure out what to do for lunch.  When I am faced with a decision, even if its as simple as figuring out what to feed them, I can't focus or do anything else.  The girls are coming at me with demands and the frustration level rises.  I no longer can do or think about more then one thing.  Becka was the one who said we should have a "silly lunch".  We have done silly sandwiches (ritz crackers with cheese and deli meat and they make little sandwiches). I told Becka we didn't have any ritz crackers (thrown out due to mice) and she said, "no, lets do silly lunch".  Calmly I asked what was in this silly lunch and she proceded to list the ingredients and as she did my mind was going, "we have that, we have that, we have that..."  It was one slice of pickle, 2 pieces of strawberry, ....As soon as she said the item I had forgotten it.  I didn't like the idea because it was a conglomeration of items and I felt like I was just throwing something at them, but Becka and I went to the kitchen and thats what I did.  On a plate, I put one slice of pickle, 1/2 an apple cut up, etc.  Becka said, "its healthy"....she wasn't far off, and the two of them scarfed it down.
I have had moments with medication where I have caught almost taking the wrong amount of important ones and taking the pm medications in the morning.  We have a pill organizer and I told Chris he needed to distribute the meds.  I don't trust my mind.
Yesterday was so bad that I was trying to figure out who I could call to come to the house today (Fridays aren't on the schedule with helpers).  Chris had to keep reminding me through yesterday afternoon that he had today off and would be home.  I had the most difficult time remembering what day it was and that he would be home today.
All this, and more, has left me feeling extremely incompetent as a parent and as a human, feeling like I need someone around to take care of me 24/7. I don't like that feeling. Is this what getting old feels like?  I think getting old is very cruel. We work so hard from the time we are born to be independent. Somewhere we peak and then start going backwards till we are completely dependent again on someone.  Frustrating.
Today has been a better day.  When Chris is home I am complete.  We didn't plan on it, but we got up and one errand led to another, and we were out most the day running errands.  I missed my meds this morning but for the most part felt pretty good (maybe because I didn't take the meds?...yeah, we thought the same thing).  My problem is, I get an ounce of energy and I run a marathon with it, and its not till I slow down a tad that I realize I have over done it.  But it sure felt good to run the marathon.  We will see what tomorrow brings.
For the most part I am tolerating the IV med through the midline better then the PICC. I am still having heart flutters, just not heart flip flops.  We have about 20 days left on this IV medication.  I don't know what will happen after that.  There is a really good chance this will be it on the IV medications.  The oral will continue for another 6-8 months until numbers and test come back at desirable levels.  I look forward to when the IV is done. I figure I have met my quota (and the rest of the families) for IV's and I figure I won't ever need one again :-)
We don't understand the way things have gone, and it gets frustrating when others don't understand either and want answers, and its difficult to have limits after having a taste of freedom (there's a sermon in there somewhere) but even in all the uncertainties and inconsistencies, I do know Who is in control.  There are times, like yesterday, when I am crying out saying I have nothing left and asking what I am supposed to do, and yet I know Who is always with me, always by my side.  Its days like yesterday when I begin asking Him, "okay, God, what are you trying to show me now?"  Its days like yesterday when I am thankful to make it to bed and get up the next morning and have another chance and I pray it will be better then the day before.  I cannot imagine doing life without Him.  Its not because I need a crutch, or an excuse in my time of weakness (which is the only thing consistent lately) but He is my foundation on which everything else exists. There is peace knowing that in the chaos of life, in all its inconsistencies and inconveniences and frustrations and yuckiness, there is Someone who never changes.  No matter how incompetent I am, whether due to illness or from being human, I know He has my back and won't get scared off by the ugly things in my life right now.  He is gracious and He is my rock and only in that is there peace in the midst of chaos.  Those who don't know Him, never experience this peace in the midst of chaos.  The scary thing is, they think they have it.  Once you've experienced the pureness of the peace that only comes from God, you will yearn for it like a child that always wants candy.  Its only Him that pulls me through each day. Some days the windows are all broken and the walls are caving in but the foundation remains strong.  Some days, like yesterday, the entire house has fallen, but the foundation is still there.  I can't imagine having a life built on anything but a foundation.  It makes me think of houses that have burnt to the ground, or been blown away by a hurricane (hurricane Ike to be exact) and in the picture you see a cement foundation and evidence of a house that once stood on that foundation.  No matter what life throws, the foundation remains.  I can't imagine going through the storms of life without a foundation.  There would be nothing left of me if I did.