Wednesday, July 27, 2016

Slices of Lyme Pie

I’ve celebrated five years of treatment for Late-Stage Neuroborreliosis, plus 5 co-Infections! 

People ask, “Are you better now”?  Yes. 

“Are you well now?”  No. 

“Are you still getting treatment?” Yes.

“What are you getting treatment for?”  That answer is a bit trickier.  I do still run rife treatments 2-3 times a week, to feel optimal. Those frequencies mainly set to address borrelia. I take handfuls of supplements and medications to support my body functions throughout the day.  At this point, what I was to recover, I’d likely have recovered; what is broke, is broke- and I need to support those functions.

My resources are limited to try any new more expensive treatments that are coming about~ but, I am so glad to see more effective and expanded options of treatments for Lyme disease now; way more than even five years ago. 

There is still a lot of education to do- to the public, but especially to the general medical practitioners. It is more than frustrating.

This disease is devastating on so many levels.

It can eat you alive.

All of you.

Every part of you.

If you let it.

Resilience is key. As, many struggle through this horrid disease on their own, as it robs them of their friends, and even family.

Within all the darkness and struggle- we hang onto Hope, and Life. Sometimes by a thread, but we hang on~

Over the past five years of treatment (I’d been sick for probably a decade before getting diagnosed), I have also found slices of good things in my Lyme pie.  Things I’ve learned; things I’ve discovered; things I’ve grown to appreciate in depth~ 

1.    Color.   When you are deep into neuro-Lyme, you begin to live in a grey-scale world.  I used to hunger for color.  I’d literally hang pages from a magazine which had paint color swatches on it, next to my bed, to look at- just to add a focus of color. Now that color has come back- I am in awe.  I love looking at it, wearing it, sharing it with others (through flowers, cards, crafts, photos, writings…) Aside- I’ve been reading a book by Phillip Keller, A Shepherd’s Look at the 23rd Psalm- and in it, he talks about Light:  it reflects off His creation, and in what good we do; His Light abides in us, shines ouf to us as we are filled with His spirit. And, I was thinking of Jesus as being our Lamplighter~  He has kept the Lamp lit in my spirit, and lights my way through this dark journey~

2.    Resilience.  This has to come from deep within.

You learn to self-encourage.

To find purpose, even when you are bed-ridden.  (Praying is one of the most powerful purposes I have, in great physical weakness.)

You learn to celebrate the things that healthy people take for granted.

You reach out to others, even if they don’t reach back.

3.    Family/friends/food.  Food is a big part of gatherings and celebrations. Since I can no longer eat most of these celebratory foods, and those around me do not care to eat like I have to (who could blame them), I’ve learned the joy of serving them foods they enjoy, making myself ‘my own food’ ahead of time- so I can at least be at the table with them (even make myself a ‘treat’ food); offer to watch a baby/child to allow mommy time to eat uninterrupted. I’ve learned you can enjoy smelling food!  And, that to keep enjoying the time with family/friends- I must keep to my food restrictions; if I cheat, it will ruin the chances of enjoying what time I have with them that day.  



4.    Family/friends.  Yes, I am repeating myself, but on purpose.  For us in the Lyme community- these commodities are rare.  When we have a chance to be with family, or a friend- it is a treasure! We work hard to get there, stay there, prep to be there, and recover. We wish we could give more- but really, most will never know the effort given to just be in the moment with them (a select few will), but the reality is, the biggest gift they give to us/we give to them, is being in the moment; being present.

5.    Life Pace.  Okay, truth:  I do get a twinge of jealously when I see posts by friends of the millionth thing they had done, seen, made, canned, cooked… while I am celebrating having gotten the laundry done, and finished loading the dishwasher without breaking down into tears (which was common the first year of treatment). But, this new, slower-paced life has me seeing things I’d otherwise passed by, not taken in.  Just breathing, is a joy.  Moving without pain, is a joy.  Taking in the scene at I walk to the mailbox- at my pace, I notice things I’d not at my former ‘Point-A to Point-B’ pace. It’s important that I pace myself, as I have the best chances of being able to continue moving forward.


6.    Presence. I am learning to be more present.  When I am able to be with someone, I can more fully give my attention to them. It is a treasure to be here; to be with them. I can rest in that more easily now than I could before.  Also, on a spiritual level- I’ve had more opportunity to sit/rest in His presence. To know His nearness; it is sweet, assuring, peaceful, delightful, refreshing, satisfying~

7.    Life goes on.  All around me. Key words, around me.  It is very fluid, and seems fleeting. There are times I feel like it is all rushing past me.  I feel like a rock, mid a torrent stream- so much flashes by me. But, I am still a part of that stream.  It may seem to pass me by, but I reality, I am still a part of it!  In fact, I’m in the middle of it- and as I come to peace with that, every so often someone will hop out of the torrent to rest a bit with me~ and be refreshed before they have to dive back into the torrent. He is my rock~ and whenever I get to share My Rock, it enthuses me.


These are only a smidgen of slices of Lyme pie I am sharing today.  There are more, and perhaps I will share more another time.  But, it is a rich pie, so serving only number of slices at a time is probably wise. 


Lyme has seemingly given me a very small world in which to live; comparatively so. And yet, in it- I’m finding depth of living.
FYI-  Follow me in Instagram  @lymesurvivorthriver