A Good Day

After experiencing yesterday I am pretty convinced we had another herx.  Like the first herx we experienced, there are days of yuckiness and then a day where you feel the herx was never around...literally the difference is like day and night.  Yesterday, I am so happy to report, was one of my better days.  I didn't wake up exhausted and I didn't hurt like I have this last week around the herx (which can be part of a herx).  At 3:00 p.m. I began to yawn and show signs of exhaustion but I didn't start my day off already exhausted and thats how it has been particularly since the surgery.  It was really nice. I looked at Chris and said, "you know, I'm having a pretty good day".  We are always scared to say that, especially on a Friday because of the added antibiotic on the weekend but it really was a pretty good day.  I also got laundry washed and put away by Wednesday night (I wash on Mondays) and that felt great especially since Monday was spent in bed as part of the herx.
Today hasn't been bad, I've just felt more tired and worn out than I did yesterday but friends of ours from Cypress came down and hung with us for several hours and that was great.  It was so good to see them and talk with them and watch the kids play.  Her kids have grown so much.  We haven't seen them since Becka's baptism last November so it was really nice to just hang out with them today.
We have an appointment with the Lyme doc on Monday morning at 9:00.  She may or may not run the labs again.  Yesterday when I was having such a good day I thought several times, "I wonder if the CD-57 has gone up". Its scary to have thoughts like that because we know that track record is that those days are rare and you don't "expect" anything to continue...you just enjoy the good day and are thankful for that day.
Again, we are going into this appointment with some questions.  One of our questions is my concern for my right arm, particularly the right shoulder.  It is hurting pretty close to what it was before we saw the natural health doctor, which was pretty bad.  Mobility is limited mostly due to it being "tied up" with the IV for almost 4 months but the joint pain goes back to over a year ago when the chiropractor took xrays and had MRI's done on both shoulders because they were bothering me so bad. At that time we were still chasing things and didn't know it was Lyme.  One of the first indicators that what was going on was systemic and not just my hand was when the x-rays came back indicating bone on bone equally on each shoulder.  Once we started seeing the natural health doctor a lot of the pain I was in (which was daily and pretty bad) the pain got under control.  But since, we have had and IV in that arm and are not longer seeing the natural health doctor due to cost, time and energy.  As I am experiencing the pain again I begin to wonder if the damage to the joints by the Lyme bacteria is permanent and if so does this mean future surgeries to "mend" the damage done by the bacteria.  This is an overwhelming thought that leads to a "never ending" feeling but usually I stop the thought with, "nope, not going there because we are taking this day by day and no matter what happens my God is in control and is with me through it and will be what it will be".  But it is one of our questions.  I do worry that I won't get everything back that we have lost to this disease, including the ability to play piano again.
Something else I have noticed is spurts of change in the memory that I can't explain but am hoping its a sign things are changing for the good.  For example, I've noticed that the last couple days (which I find interesting and note that it during a herx time) I am been scrambling for whatever I can to write on the things floating randomly through my brain in an effort to catch them before they flee away because I don't make a visual reminder that I had the thought I may never remember it again.  I don't remember (that may be part of the problem...I say with some humor) doing that a week ago as badly....that I had gone a little while (how long, I can't say...again with some humor) without using my stickies in my purse or by my bed or in the kitchen to write down fleeting thoughts.
I am in the midst of trying to organize the girls curriculum.  The curriculum we are using this year is different and more involved but I am so excited that we are doing it.  I am a little apprehensive about it because it is more involved, thus it will require a little more effort on my part and I worry if I will have the strength and stamina.  I felt like we spent so much of last year in survival mode after we finally figured out what was going on with me.  It was a rough year with homeschooling due to the changes in me.  With new curriculum this year I have been trying to get aquainted with it and trying to get a feel, especially for Becka (2nd grade) what each day will entail. It is taking more time, and stickies, to do this because I don't retain what I have looked at to piece together with the next thing I look at. So, what would probably take a normal person 1 hour to do, takes me at least 10 times that.  So, in that regards we don't see improvement.  I am still unable to focus on one thing, literally, at a time.  Example, again, is listening to a DVD last night on Becka's new spelling component. It was running and I couldn't make out what was being said, mentally.  After struggling for about 10 minutes, I stopped it, grabbed my ear phone and stuck both in the ears and started the darn thing over.  With no other stimuli going in auditorally I was able to focus and grasp what was being said.  It is very frustrating but I am getting better and better at recognizing what is going and therefore able to sometimes lower the frustration.  Other times I'm not able to like when I am doing one girl's hair and the other is asking me questions, or even just standing next to me talking endlessly (see if you can figure out one that is...I say with humor) the frustration level rises quickly as I am easily over stimulated.  To much demand on the system causes it to malfunction...thats the best way to put it. Fuses were blown oh so many times long before we had a diagnosis.  I still can get frustrated but I am trying to help the girls understand how to help me.  They don't get it and don't understand but we are all trying.  I felt so bad Tuesday evening as I realized I had completely forgotten to take Maddie to dance that morning.  The brain just doesn't register the day, and things that are regular routine, much less the things that aren't routine.  I have since activated the calendar app on my phone to send me an alert the night before and 2 hours before Maddie's dance class.  My mind and memory is one thing I have lost to Lyme that I hope I get back...said with no humor and all seriousness.
Praise God for the good days and pray heavily for grace and strength to get through the other days.
One thing we are looking forward to is having the youth over Sunday, August 22nd for WBS- Waffles, Bacon and swimming.  Of course this is after their back-to-school bash that night at youth.  It is things like this that Chris and I love and feel passionate about doing.  These type of things at our house is our niche. I have recruited 3 other ladies, 4 waffle irons and 3 griddles to see the youth get fed that night and have one last night of hanging out before school starts the next day...for everyone, including my girls.  It actually bummed me out today thinking about next week being our last week of the summer to be "lazy".  This will be the earliest school has started at our house...at least that is when its planned to start...said with humor....as I think about most things I try to plan right now runs at least 3 weeks behind. God willing and the mind doesn't fail me it will start.  I will be flat out exhausted after Sunday nights wet, sugary bacon event but it will definitely be worth it and I so look forward to it.
So, people have been asking, "are you getting better?", or "do you see a difference?" and that is a difficult question because some things are better and some are worse. Wait a month and it they switch.  Things aren't staying the same, and thats supposed to be a good sign.  It will be nice when there isn't anything left to get worse or better.  Thats what I am shooting and longing for but I am waiting on the Lord for that day.