Losing My Mind?

I really don't know where to begin which is part of the problem lately.  I think we have been having more better days but don't want to change that by saying it :) Its very possible we had another herx this week which would fit the cycle but if we did it was pretty minor compared to the others.  Its difficult to tell other than the low grade fever.  I rarely have a temp above 98.0. Usually run 97.7.  I woke up feeling yucky Tuesday after a pretty rough night, roughest yet (will explain why) and felt warm all day. Went in to have the dressing changed on the midline and was running a low grade fever, 98.9.

Things have gotten a little blurry.  Some might minimize it and laugh at what is going on but for me its extremely stressful.  It feels like I am having more and more episodes where my mind just doesn't work, it is clueless even over things that have been routine for 4 months now.  For me, its scary.  Back a couple months ago, I was given a pill organizer by a sweeet lady. One of the best gifts ever !  One morning began taking my medication and noticed one of my sleeping pills in the mix.  I take them in the same order each time.  I had poured the "p.m." batch and not the "a.m." Another night I noticed I had distributed 2 of my sleeping pills for one night.  Caught it as I began taking the pile.  At that point I told Chris he needed to distribute my meds to my pill organizer to make sure this didn't happen again.  I used to have a spread sheet where I kept track of what I took and when but found I just marked off not really paying attention and quit doing it.  The IV medication we are on right now is a medication left over from when I used it as an injection. Therefore, it has some extra steps that have to be followed to "reconstitute" it (its a powder and has to be mixed with sterile water and done in a sterile way") and get into an IV bag.  Before the summer, Chris was consistently home for lunch and would hook me up to the IV pole. Now, he has summer activities and isn't consistently home.  No problem, I'll do it myself. Last Thursday, I had a sweet lady from church at the house helping me and she began watching me mix and set up the IV.  She would then say, "aren't you supposed to do ..?" I realized things I had done for months now, like wipe bottles off with alcohol before inserting needles with sterile solution, I was blacking out on and the mind didn't seem to care about it.  I have some strength issues with my hands, and where the midline is doesn't give me a lot of room to work with when doing it with my two hands, but determined to remain independent I thought I could manage.  We got it hooked up and she left. I looked up to find the IV was never flowing.  I got a little flustered because we were under a time constraint (Becka had gymnastics). For ten minutes I sat there going through each point trying to figure it out. At the same time Becka and I both figured it out...I hadn't flushed the IV line before connecting the IV medicine.  I disconnected, flushed, and connected again hoping I hadn't messed anything up, and it began to flow.  This was a real eye opener that something wasn't working upstairs correctly.

Monday night was one of the worse nights I have had.  I was wide awake most the night.  I layed in bed just hoping if I held still long enough I would get some sleep, any.  I got up Tuesday morning and was achy and feeling "herxy", and figured that was what was wrong.  It made sense. In the past I can't sleep during the day during a herx and so maybe the herx had started in the night...I don't know. I went to my pill organizer to grab Tuesday mornings meds and it was empty. I discovered I had taken Tuesday morning meds Monday night. No wonder I was wide awake!  And, once again, I came to the realization that I could not be left to my own to do any of my meds or the IV.  I know have to rely on someone else to dispense them to make sure I am taking the right ones.  This morning I got impatient with waiting on the ladies coming to help. So, I asked Becka to come over and talk me through it. I asked her what day it was and that it was a.m. and she double checked that I was getting the right box.

I have had two people question whether I should be driving.  Hmmmm good point but I'm not going there.  Basically, the only time I leave the house is to drive Becka to gymnastics or Maddie to dance (which she is done with till August).  I do worry some but feel we are okay, for now.

Another problem we are seeing is that, since the change in IV meds, I have really struggled with Grumpy Gus.  Its a daily occurrance.  It doesn't take much to over stimulate me, wear me out, or do me in. I feel I begin the day with quite a bit less of patience and stamina as it is.  But, it doesn't take long before the patience is gone and I am at my wits in.   Chris feels its the medicine and I have to say when we were doing it as an injection I struggled with my moods, but I just figured two injections a day in the hiney would make anyone grumpy.  After almost 6 weeks of injections, no part of my back in could touch anything without screaming in pain and since my two kids are just the heighth, it happened often.  And though I love the colors blue and purple, I really prefer them somewhere other then on my back end.  I agree with Chris that this is a major possibility along with possibly my diet.  I have not stuck to the Lyme diet strictly since my birthday. I am so food challenged right now that sometimes its all I can do to eat.  I don't know if the lack of something or the existence of something else could be messing me up.

So, I beg for your prayers for our family, especially my girls who are with me more then anyone else.  It is very frustrating to end more days then I would like feeling like I won the worse mom award again.  I don't like how I have been and I am just counting down the days of this IV med (16 I think today) and am hoping the doctor takes the IV out.  I know its my best defense, but short of losing my mind, I need for it to go.  Please pray for test results. Please pray for strength to return as well as my patience.  My family would greatly appreciate it :)  It has been very difficult with the 2nd midline.  I did not expect the mental challenge that it has been.  It is exhausting to say the least.  But, we are pushing through.  I know I am having an exceptionally bad day when I get numerous texts and emails all in one day.  God knew I needed the encouragement those days.  Thank you for being sensitive to the spirit. Again, I just pray for your prayers for my family.  Pray for their mental, physical, and spiritual protection.

I end by saying that I was deeply touched by a couple in our church who approached me Sunday to share that they had watched a video called, "Under Our Skin".  It is a video that goes into great detail about Lyme disease.  I was so touched that they would take the time to watch something to learn about about a disease that two people in their lives are dealing with.  They have a greater understanding now of the different aspects of Lyme and, therefore, they can better grasp what people with Lyme are going through.  When I share about it people are in disbelief.  It is difficult to understand that doctors can actually lose their license for treating a patient for Lyme disease.  It doesn't make sense. But that is exactly the type of disease we are dealing with.

I know how my body is supposed to respond to treatment and how long science says it will take. However, I also am completely relying on God for where ever and for how ever long this journey will take.  It was extremely evident in the ER the last time that I/we have no control over anything.  This journey will go exactly how He ordains it to.  So, on one hand I beg for prayers that numbers are high and IV comes to an end, but in my heart I know He already has it figured out and it will be what HE wants it to be, and nothing else.  I am signed up for the entire ride and will do my best to ride in the passenger seat and let Him drive. It can be scary at times but at least I know I will show up where I'm supposed to without getting lost, and the ride will be less painful if I let Him drive.  It is a daily surrender.  Can't imagine it any other way.