Crazy Frustrating Disease!

I am feeling frustrated, sad, mad and even a little scared today.  Last night was a rough night and sometimes those "what ifs" start to rule.  Like "what if he doesn't get better?", "What if this treatment doesn't work", "what if his hair doesn't grow back" and on and on.   But backing up a bit, we enjoyed a wonderful Labor Day Weekend with lots of fun activities and Thomas did great all things considering.  After each activity he was definitely tired and needed a long rest period but the dizziness did not come back and he was able to do another activity the next day. It was nice for all of us to be able to do activities together as a family again.  It's hard to paint a clear picture of what it's like for him though and how normal kid activities are different for him compared to a healthy child. 

After picking apples for around 45 minutes, he needed to sit for a good 30 minutes before we he was ready for the next part of our trip which included a stop at a fun playground and petting zoo.  Then upon returning home, he spent a few hours in his room reading and playing video games.


Saturday we enjoyed going to the local bowling alley which also has a ropes course, go karts, putt putt etc...  After a round of putt putt, they decided to tackle the ropes course.  Thomas mastered his fear, thanks to the encouragement from Daddy.  He even did the zipline after many "backed out" attempts.

After that he wanted to go bowling, so we headed to van to get his sister's socks.  After the walk to the van, he was really struggling.  He leaned on the van and cried.  He wanted to go bowling but he didn't have enough strength left in him and his head was really hurting.  We settled for a 2 minute lazer game and took him home.  He rested and then slept in our tent with his sisters in the yard.

Sunday we decided to get in a trip to Lake Michigan.  The weather was beautiful.  We climbed the dune first.  The other kids and Dad made several trips while Thomas and I took it slow and eventually made it to the top after laying down in the sand for breaks.  After a picnic lunch, we went to play in the water and sand.  Thomas was sound asleep within 5 minutes of leaving the park.  It's sad to see a 3 hour trip cause a 9 year old to need a nap but that's what his body needed. We also had a wonderful time with fireworks.

Monday was a total rest day (at least for Thomas- the rest of us got in last minute summer chores).
We've started having Thomas specifically "ground" himself for at least an hour a day.  By grounding, I am referring to the principal of Earthing.  http://www.earthinginstitute.net/ We have him be outside barefoot connected to the earth.  The earth's magnetic field is supposed to help with healing and relaxation.  Many relate to it when you think how you feel after walking on the beach barefoot.  There are products out there like grounding sheets to sleep on and mats to rest your feet on but we decided since the weather is still favorable, we would check out the "free" version of grounding and see if we noticed any improvements before investing in a product.  Mackenzie just cracked me up while "earthing" with Thomas and myself, she said "couldn't we just add some dirt in his shoes!"  I almost fell over from laughing.  I love children!

I also called our naturopath and discussed with him Rife Machines again. http://truerife.com/ After letting him know the cost of the machine that was recommended for Thomas, he said it was not worth the money.  We had spoken with other alternative providers and they felt he would only use the Rife overnight and therefore the cost of the unit we needed went down to $3500 from $4500 but the Naturopath still said we would not get the benefit over the cost.  So we are putting that idea on hold for now.  We have connected with someone about 30 minutes away who could do sessions during the daytime with him; so that may be something we explore more.  I also have two books to read on Rife Machines and Lyme in the meantime. 

We are currently considering NAET http://allergychiropractor.com/how-does-naet-work.  This site describes it but there is actually a wellness centers in our town that offers it.  I have spoken to them several times but have not yet made an appointment.  Monday morning, I also have a phone consult with a doctor in Grand Rapids.  We know two families being seen by this doctor who have Lyme Disease.  I also have been in contact with another center in Reno, NV.  They have been fabulous to talk to and have sent me wonderful information.  This is a last resort on our list at this point as it is an extremely expensive program (Joe estimates based on what they sent plus hotel/airfare, food etc.. about $40,000 not to mention I would be living out there for a month with Thomas).  They would also have to approve him as they typically don't treat children under the age of 12.  http://www.sierraintegrative.com/  A friend of mine from years ago actually moved out to that area and went through treatment with them and is doing fabulous.

This week started our home-school partnership which includes classes on Wednesday morning.  Thomas had a fantastic time.  His first class was Lego Builders and it was 45 minutes of building- what could be better.
Then he had gym class.  I watched him for awhile as he played capture the flag.  He captured my heart as he pressed on to keep up and even surpass many of the kids in the game.  I was VERY nervous that the running would be very hard on him.  His last class was art and he enjoyed painting.  I enjoyed not having to clean up that mess (think 9 year old boys with paint brushes that magically turn into swords) :-)  Wednesday night he complained that his legs really hurt.  They continued to bother him on Thursday and he wasn't really wanting to go to Racquetball that evening but we encouraged him to try.  He ended up having fun with that.  However bedtime had him in tears from the pain.  He said his legs were a #10!!!  His head was hurting too.  He fell asleep while I massaged his legs and feet and thankfully slept the whole night.  The other downside we've noticed the past couple days is that he's not reading again.  I've tried asking him what happens that makes him not want to read but he hasn't been able to put it into words.  He did say this afternoon that it kinda makes him sick sometimes.  This is SOOOOO FRUSTRATING!!!!  Reading is something he loves and it is such a great quiet time activity for him but when he feels badly something goes awry and he doesn't read.  He still is able to play Minecraft or watch his brother play.  We've also struggled some with schoolwork but he does eventually complete all the assignments for the day it is just more spread out then it typically would be. 

Today he had swimming at the Y.  He LOVED it.  He got to jump in the deep end and he swam all around.  I am praying that this wasn't too much.  We also went to the chiropractor today.  He had a few adjustments but was doing well.  Next week he has another cranial sacral massage scheduled.
 
I wish there was more support for this disease.  I wish more people knew and understood it.  It's hard when you have a child who looks "normal" and isn't.  I wish I knew how to find the balance between what he can do and what is too much.