Lyme: Why should I listen to you?

So... it occurred to me that there is no reason why anyone should even bother to read this blog. They do not know anything about me -- why should they listen? I could be some crackpot who is being dramatic... who has never had a day of pain in her life.
You see, that is exactly why I will give you the reasons why I even took the time to write this at all -- I am someone who can describe some of the most painful stuff to deal with like:

• Kidney stones. I can describe them in detail... that is because I have passed 2 of them. The pain of that is as bad as childbirth -- worse in some ways because at the end, you do not get a baby, just a piece of jagged coral for your work.
• I had a baby and the very next day had surgery to get my gallbladder out because I had stones while I was pregnant. That was miserable.
• I have had Endometriosis since I was in high school and have had 12 surgeries to get that crap cut out.

My doctors told me that what I do every day to get up and make it through is "nothing short of heroic". My endo doctor told me he has the highest respect and admiration for how I have dealt with this mess. My best friend from high school undertook some of the most challenging training out there when he was an Airborne Ranger and later when he joined the FBI. He said that thinking of me got him through it... seeing how I dealt with pain and gritted my teeth and made it through is something he never forgets and it helps him to do the tough stuff.

So how is Lyme compared to all that?
It is worse. Because there is no finite end point and, more terrifying, the medication does NOT make your feel better. In every other health crisis, medication was my friend... it helped the pain, it helped the symptoms. In every other health crisis, there was a clear point that I could hold onto and know that once i got THERE, things would be better... like after I peed out the stone or after the surgery was over and I healed or after the baby came out.
Lyme is not even close to being that way. Not even close.

Lyme bacteria and its "friends" (the associated bacteria and viruses it brings along to the party) are alive. Things that are alive have an intense desire to stay alive and so they fight back when they are attacked. This is just their nature -- they are just doing what bacteria does. It's not personal. But make no mistake: it S U C K S. Why? Because they pull out all the stops to get you to lay off and stop the medication. Your symptoms get worse. Your body gets so fatigued that you cannot get off the couch and feed yourself. And since every person is different, there is no set timeframe for how long it will take to "get to the other side".

Well how bad can the symptoms be? I mean... how BAD can it possibly be?
Worse than anything else I have ever been through. And now you understand that is saying something. I cannot do it in this post but I will post it next -- a detailed list of what symptoms I have experienced. Things come and go and switch sides and get worse and ease up... but I will put them all down. I think I have put up bits and pieces of what I am going through but I will be complete about it in this list. I do not like thinking about it. I live it every day so writing it down is not a good place for me to be... but maybe, just maybe it will give comfort to someone else in this mess. I think if even one person finds this and reads it and goes away knowing that there is someone else out there who is dealing with this too ... well if that gives even the smallest bit of comfort ... then it was worth the time to write it.

Healer

I thought he was going to be just another doctor... but he wasn't.
Just another doctor, I mean.

My current doctor is unbelievably good and should be called "Healer" because he is so much more than labs and medication. Right now, I feel like one of those jigsaw puzzles with the pieces all messed up and the picture not fitting together... my doctor knows what the picture should look like and is putting different sections together methodically and consistently. He can see the big picture of how the brain and body work together -- or don't as in my case -- and slowly starts rearranging the pieces until they start to fit together the way they should. He understood me and my garbled descriptions of all my weird symptoms without raising an eyebrow or looking freaked out.

Which is saying something, believe me.

I have learned so much from this man... he says that one thing that doctors don't recognize or help with in Lyme patients is the effect of Lyme on the middle brain. I can tell you from intimate experience that it SUCKS to have this stuff in my system but at least now he has explained what is happening so I understand it. He said that I need to view my brain and energy like this: I have $30 bucks for gas and that is it -- once that is used, there ain't no more. So I fill up my tank. If I decide to use it all up in one go, then I will find myself on the side of the road. If I use it in small amounts with breaks in between, then I can make that $30 bucks last awhile and NOT get left on the side of the road.
What happens when I use it all? I wanted to know.

Well, the middle brain gets overstimulated. This can happen from too much sun without polarized sunglasses or watching TV or playing computer games or being in a store with those horrible lights overhead or... It causes the brain to get so fatigued and trashed that the swelling gets worse which makes my symptoms worse.

Ah. So that explains a lot.

He said that finding ways to manage my energy and keep the brain from getting overstimulated is crucial right now... and he has some interesting ways to stretch my limited amount of energy as far as we can. But before he gives me his tricks for stretching energy, he does all these tests in the office to see how my brain is functioning. He can tell exactly what areas of my brain are not working with these tests -- it is fascinating in weird way.

In my next post I will explain what tests he does as well as the tricks he has me use to help extend my energy and keep my brain from getting overstimulated. I wish I could do that now but am done on the computer for now. Too tired and vision is blurry.
I hate ticks.