15 years

15 years ago today is the day of my first memory.

I was in first grade, sitting at my desk. My teacher came and said to get my book bag ready, that my Uncle Tillman was coming to pick me and my siblings up. Of course, we had no idea what was going on. I just remember seeing their van pull up, and my brothers and I got in and they drove us home. They were very quiet, didn't say anything. When we walked into our house, my Grandma was sitting on a dining chair, smack in front of the door, softly crying. I thought that was very strange.

Then my mom gathered all us kids in the living room, along with a lot of other people, and handed us hankies. Then she broke the news that Papa had died. Everybody in the room burst into tears. Except me. I was 6 and didn't know the magnitude of those words. I just remember sitting there watching everybody crying, holding my hankie, wondering what I was supposed to do. And that is all I remember of that day.

And this is where my memories begin. I hate it that I don't remember my dad. Everybody says what a wonderful man he was. How he loved us kids so much. How he was such a strong man of God.

I find it so unfair that SO many people got to experience that, yet his own kids didn't get that privilege. I could really use a dad right now. To hold me and tell me its going to be ok. But I don't have that, so I lean on my Heavenly Father to comfort me.

The last couple years, this date has been more of a remembrance/celebration for him. As the years pass, the pain of loss slowly resolves. But I think this is the hardest year for me yet. I need him now more than ever.

Happy Heaven-versary Papa!!! 

You've got the best seat in the house! 

I love you and miss what could have been! 

Love~Lynnelle


And please don't comment on how *cute* it is that I still call him "Papa". It is all I ever called him, it feels very unnatural to call him anything else. Its not a cute factor. Thanks! 

So many thoughts....

I have so many things I need to post about. 

They're all just swarming around in a giant cloud of fogginess.  

I'll leave you with a picture. Today, I just want this fat little baby back.

Ghea, you are the love of my life.

 I wish you wanted more to do with me right now than coming in for chapstick. Lol....I love you anyway! 

But here you are today. So charming. And curly just like me! 

Frustration...

  I need a way to make $30.00 a month. 

I am so aggravated with Verizon. 

Anymore, you can either get a tiny little basic phone or a smart phone. Here's the thing, I need just a couple special features of a smart phone, ones that do not require a data package. 

But guess what? No can do. 

If you have a smart phone, you must also purchase a $30 data package. 

I need ideas of how to make $30 a month, from my bed. That does not require much memory or cognitive abilities. Or energy. 

Ideas please, my current phone is really going down hill and won't hold out much longer. I'm already 8 months past my contract renewal date thingy. 

Ridiculous data packages. Why can't they at least give me the option of a $10 one??

I never ever thought I would say this, but for the first time in my life, I want to be 14 again. But only on a weekday from 3pm-5pm.

I miss my Grandpa and Grandma so much! I miss those after school "snacks" that often turned into near meals. I miss their old house. I miss being able to stop in ANY time. Always welcome and wanted!

Right now, I am so hungry for my Grandma's cooking. Her baked chicken, potato salad, pies, Daisey-Evers, chicken noodle soup with her homemade noodles, cornflake pudding, jello salad, and oh so much more!!

I think I am going to start planning a trip to Virginia for Thanksgiving. I don't care how sick I am. I just want to be with my Grandpa and Grandma!!

I am so blessed to have grown up next door to them all my life until I moved away. The last almost 2 years have been so incredibly hard being so far away.

I love you Grandpa and Grandma!!!

Taken the morning after I returned from Guatemala.

This is kind of silly but I can smell my Grandma right now. LOL! 

1 year...

..in bed.

Let me just say, we have a special bond!

The day I noticed something wasn't right.

And today. 

I don't know what the next year holds, but I DO know Who holds the future!! 

*Blessings* 

Well, I'm back. And I don't really know what to say. Except that I'm struggling.

I'm sick.

I'm exhausted. Melting into my bed, becoming one with it, exhausted.

And I can't think.

I am positive for Mycoplasma and HHV-6. This helps explain my complete exhaustion.

I started a new detoxing IV. I think its called PTC for short, but I can't remember the true full name. I had a good herx reaction from the first one but they won't let me do that again, so we've done it without the glutathione push afterwards ever since. I'm getting them once a week and I've had 3 now I think.

My BUN is back down a point. It had been up to 6 but this month it fell back to 5. I had been hoping for it to be a 7 or 8 so that I could cut back on my amino acid IVs but that isn't going to be happening. :(

The one thing that has improved is my nausea. It is not constant anymore. I still struggle with it sometimes, but not as badly. And I have been able to eat roughly the equivalent of 1 meal a day most of the time too.

Otherwise, I'm just seriously lacking motivation. I KNOW this can and will work, its just that I'm tired of it already! I've been treating for 18 months and have been house/bed bound for a year. Its really old. Yet at the same time, I hardly remember what its like to be able to function. Properly. To a certain extent, I don't think I've ever known what thats like, but I sure had much more functionality (is that even a word??) than I do now!!

I know God has everything under control and that He has me here, in this position for a specific purpose. So I just rest in that knowledge. And know that He is the One who gives me all that I do have, it could be so much worse!!

Thank you all for your prayers and support and love! It really means a LOT to know that people are thinking about me. It is easy to feel forgotten with this isolating disease.

<3 <3 <3 <3
Lynnelle

Spoon in brain!!

The last week I've wanted to update but every time I come on to do so, my mind goes blank. I have no idea what I wanted to update about. I've been having a lot of problems with my concentration, racing thoughts and just brain fog recently. I will be thinking about totally random things, having no idea why. And the next minute I have no idea what I was thinking. Mind will be completely blank. Its in these moments that all I can think is...

...."I can't think"!! 

Its is in these moments that I used to yell, "spoon in brain!!" because it simply is like having somebody stirring your brain with a spoon. But now, I can't ever think of that one saying that I want to say at that moment. Oh well. 

The only thing I can think of to update you on is that my BUN is up to 5 now. It had been 4 for about a month or more. The normal range is 8-20 so we are getting there, slowly but surely. I think I've been on the amino acids for about 3 weeks(???) now. 

Also, my CD57 is 12 now. My last testing was probably 8-10 months ago and it had been 23 then. The CD57 is your killer cell level and it is a kind of measure of your immune system. Only the Lyme spirochetes lower the CD57. The ideal range is 200-360. They won't stop treatment until you are at least 150-200-ish. So, as you might imagine, I have a long way to go. 

*And people think I'm faking this....  (sigh)