Learning how to feel.

I have spent the most part of my last few days staring at a blank page. Waiting for words to come to me. Waiting for positive and inspiring tidbits of information to leave my mouth and sprawl between the lines. But each time I sit here and stare at the paper I realize that there is a good possibility those words aren't going to come. At least not today, tomorrow or next week. So instead of being able to turn this into another one of my awe word Inspiring blogs I decided this blog isn't going to be like that.. Instead this blog is going to be a piece of the opposite. It's going to be open and incomplete. It may have moments of misunderstanding or self pity. So if you aren't prepared to get a piece of a broken soul today and you are looking for a piece of Inspiration I'm warning you to turn back now. You are in the wrong place. 

Seven months ago we got our daughters Lyme disease diagnosis. A five year old with an untreatable chronic disease. Symtoms that are debilitating while active. A disease that is unexpected and overlooked. A rare disease spread by the grubby fangs of a tick nestled into a beautiful  countryside just waiting for their next prey. In that moment you search for answers and I asked myself a million times where we got this from. Where it came from, how? Many doctor consults later while visiting with some of the top lyme specialist in the country it was brought to my attention my complicated medical past and history. They suggested I get tested for lyme. I blew it off assuming and it not ever crossing my mind. For many reasons. Did this mean I had lyme and could've given it to her in utero? Were they insinuating all my complications could be related to her illness?

 For months I didn't even entertain the fact. Emy was being treated. She was well and improving. I had my local doctor run a screening for lyme. 

Let me break this down. Running a screening for lyme isn't an actual antibody test. Running a lyme screening vs an actual antibody test is like running a  lawn mower over some high grass trying to find the wedding ring you dropped somewhere in the one acre of grass the day before. In my case possibly 12 years before. 

Lyme is elusive like that. So I ran it against really wanting to and it came back I had antibodies of lyme but not enough to set off a CDC positive. Which means my immune system HAD been exposed to lyme but probably had taken care of it right? That's what I thought. 

Unfortunately lyme doesn't work that way. Lyme is like a corn maze. A horrible corn maze with things hiding at every turn and there is that possibility you get out of it and in fresh air quickly or there is that possibility you might never. I have not the time or energy to describe lyme how it's diagnosed and tested so here is one of the top lyme specialist in the country website where he has more than thoroughly explained it. If you have any inquisition I suggest you read his studies and research. 

http://drcharlescrist.net/Borreliosis/Testing-for-Borreliosis/

So with a swift kick in the gut Friday after seeing a lyme specialist, I should be used to the these by now. I faced the hard reality I had chronic Lyme disease. I have had it for a possibility of up to 12 years. Which caused the loss of our first daughter stillborn, more miscarriages, heart, blood and gastroenterolical issues, joint and jaw problems, migraines, and more health problem than any 29 year old should have to face.

Oh answers. I hoped I would be relieved by these answers but it seemed with them just came more confusion and pain. Now we start the journey that our other children also have the possibility of carrying dormant lyme. Which will require testing and possibility preventive treatment. Lifetimes of changes, all revealed within seven short months. 

Life isn't given. I've seen that before but I see it more clearly now. Good days aren't promised and most assuredly not guaranteed. Frankly sometimes the life you get handed flat out sucks. I'm not saying it won't get better, or that it will always suck. 

I always had the postive side when it was just me being able to take care of Emy. Nurse her back to health. Be her positive ray of sunshine but today as we went for her routine labs to check on her disease I realized I had it backwards. She was my postive side. She was my hope and she is why I know I can do this with her help. Don't take life for granted. Don't take your health, hope or happiness for granted. Be happy for every moment of health you have because it can be stolen from you without a warning. It can be taken without explanation. Without warning. And it can leave you in a fog of confusion, pain, and hardships you never thought you would face. 

Lyme attacks families. Lyme attacks hope. Lyme attacks and when it does it does without warning. 

I'm not full of inspiration today. Instead I'm full of truth. 

Sometimes it's okay for people to see your pain. Sometimes it's okay for people to understand your disappointment.

Sometimes it says more to someone instead of offering words of encouragement to realize sometimes all people need are prescense. Not a false sense of everything will be okay. But rather a friend for the journey. 

Until next time. 

Amanda 

The modest mom 

     My little lymie getting her bw today!