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  

Monday, December 7, 2015

What are You Waiting For?


What are You Waiting for? 
 
 

Yesterday, I had the great pleasure of fellowshipping with a few young adult ladies.  As we were going around sharing, Mara, shared about a gift the LORD gave her during her devotion time, and prayer. 

In answer to her prayer, the LORD told her to be present, stop waiting to live for Him. Not that she should stop making plans, but more that ‘today is the day’, and really, all we have is the present. He is present, and He calls us to live for Him in the now.  Not after the next semester, or when things are more stable, or after graduation, or after….but now.  Keep alert; He is at work now, and inviting each of us into what He is doing now.

Interesting, each of the other young women in the group had been meditating on a similar theme. To top it off, this morning’s Advent message was about waiting.

This thread of waiting percolated in my own thoughts.  Advent is all about being mindful of anticipation of Christ’s birth, and thinking of all the faithful who, before that time, waited.  We celebrate His coming, and our anticipation is in when He comes again, and when we return to Him.

With this waiting, there is anticipation. Each of these ancient faithful lived in the moment, but those outstanding ones, whose torches burned most bright, knew how to live for Him daily.

In daily life, seasons of life- we are most likely to put God off, into the future; “I’ll live for Him when I get out of school; I’ll live for Him after I get the promotion I want; I’ll live for Him when I’m financially secure; I’ll live for Him when I feel better; I’ll live for Him after I quit using; I’ll live for Him after I get married….”

He waits for us.

Meanwhile, we miss out on all that He is doing in this very moment, all around us; wanting us to join in, if even ‘only’ to enjoy the moment with Him, and give Him thanksgiving.

I think this can be especially true at Christmastime.  Many of us are so concentrated on getting everything ‘just right’; making the children happy; serving the perfect food; having the perfect table setting; best decorations; most fun gatherings…  But, for most of us, there is no such thing as a ‘perfect Christmas’.  We live in a broken world, where there are broken relationships, people get sick, things break, plans change, resources are limited, loved ones are gone, or miles away…

No matter how well we plan, stuff can happen.

If we are waiting to ‘celebrate Christmas’ until everything is just-right- we will likely miss out on many joyous moments. 

So, what are you waiting for?  If you are waiting for an invitation- here it is, “Come.”  Come, let us adore Him. Come, taste and see that the LORD is good.”  Today is the day of salvation.” 

Keep your heart and mind stayed on Him daily, even moment-by-moment, be alert. He is at work now, and He wants you to open your eyes to see what He is doing; He wants you to open your ears to what He is saying to you; He wants you to live for Him, and to be willing to join in on a mission of service, perhaps to someone right next to you- to share that:

He is Hope,

He is Joy,

He is Peace,

He is mercy,

He is grace…

He is here.

Now.

Don’t wait!

Matthew 11:28; 14:29; 16:24; 16:27; 18:11; 20:28; Psalm 34:8; John 1:46; 2 Corinthians 6:2

Monday, June 30, 2014

A Psalm for Lyme Fighters




I was reading my Daily Bible passages, and again visited the Psalms- in particular, Psalm 142. 

What a great Psalm for Lyme Fighters. 

Here it is-  

See if you can relate:


Psalm 142  New American Standard Bible (NASB)

Prayer for Help in Trouble.

[a]Maskil of David, when he was [b]in the cave. A Prayer.

142 I cry aloud with my voice to the Lord;
I make supplication with my voice to the Lord.
I pour out my complaint before Him;
I declare my trouble before Him.
When my spirit [c]was overwhelmed within me,
You knew my path.
In the way where I walk
They have hidden a trap for me.
Look to the right and see;
For there is no one who regards me;
[d]There is no escape for me;
No one cares for my soul.
I cried out to You, O Lord;
I said, “You are my refuge,
My portion in the land of the living.
Give heed to my cry,
For I am brought very low;
Deliver me from my persecutors,
For they are too strong for me.
Bring my soul out of prison,
So that I may give thanks to Your name;
The righteous will surround me,
For You will deal bountifully with me.”
 
 
Well-  can you? 
 
I sure can! 
 
This July marks the ending of three years into treatment for Late-Stage Neuroborreliosis with 5 Co-Infections- and the beginning of my fourth year.. (I expect to battle on for my life-time). 
 
That first year (if you read back on my blog site)  I spent months in a cave of my own. 
 
Down in our basement area, I'd spend 5-8 hrs a day, five days a week, using a Rife machine protocol. (along with abx, nutrition, supplements, herbs, etc.)  An all out 'blitz', complete with me in our 'bomb shelter' like basement area. 
 
I felt SO alone.
 
Only by the grace of God's presence meeting with me, did I keep going.  I found Him Trustworthy and Sufficient in those days. 
 
Even though I was held captive by the disease and necessary treatments- in Him, I could be:
 free,
 loved, 
have purpose,
have identity,
be heard,
be wanted,
be valued,
be rescued,
...be dealt with bountifully. 
 
Did I always feel those things?  No.  But, that did not mean those things were not true.  They are truths I hung on to, and continue to hold on to... all wrapped up in the person of the Lord Jesus Christ.   The One Who extends His tender Compassion to us, no matter our state of being, no matter where we are.
 
Many days I don't feel the 'bounty'- my mortal eyes evaluate my state with mortal standards.  But, as I sit before Him, enjoying His Word, enjoying Him- I am reminded of His amazingly bountiful grace and mercy-- and indeed, if He deals bountifully with me in only those two areas alone- it is more than enough...  And yet, He extends to me well beyond those...  Selah (soak it in; my Hebrew paraphrase) :)
 
 
 
What if I can't do any more than I can do today?  (The silent question we dare to ask.)
Is it enough? 
 
Yes.  In this moment, it is enough- because He is present with us in it.
 
This lesson, this 'place', doesn't come easily.  It is borne through months of labor-living in the caves. 
 
But, it is a valuable lesson.  And brings us to daily living, minute by minute, before Him, in whatever state we are in. 
 
Our brother, Paul, puts it this way: to be content-  (Paul is another who knew well about 'cave/prison' dwelling, and chronic health challenges):
 
Philippians 4:10-12 New American Standard Bible (NASB)

God’s Provisions

10 But I rejoiced in the Lord greatly, that now at last you have revived your concern for me; indeed, you were concerned before, but you lacked opportunity. 11 Not that I speak [a]from want, for I have learned to be [b]content in whatever circumstances I am. 12 I know how to get along with humble means, and I also know how to live in prosperity; in any and every circumstance I have learned the secret of being filled and going hungry, both of having abundance and suffering need.
 
 
To be content, no matter my circumstance.  Know that I am much more cognoscente of the lesson, I practice is more now-  but, it is not something I have down-pat.  I must continue to practice it- by keeping in close communication with the LORD- pouring myself out to Him, and allowing Him to refill me.  It needs to become like breathing.
 
Are you in a cave today?  Or, is it a day spent outside?... no matter what-  The LORD is drawing near-  draw near to Him, be content in the moment with Him-  and you will enjoy the moment, and be less concerned with 'what will or won't happen' down the road. 
 
Blessings-
 
 
 
 
 

 

Wednesday, June 25, 2014

Humbled and Honored


                                                                     

Well, it's been a bit since I last posted.  Thought I'd check in and see how you are doing?  (No, this is not a pic of me- but our curious horse) :)

Life happens- and at a rate much faster and with energy requirements generally higher than my personal ones!

Got through our son's high school graduation!   WOOT!  So awesome!  He is excited for college to begin this fall!  Also been continuing to (slowly) work on estate matters, left by my dear dad who passed-away this winter. 

And, this next month- one of our daughters is moving a number of states away- to take on a new season/career move of her life...

Throw into the mix that Lyme amped it up- so I needed to as well.  More labs, more procedures (more money), more treatments...

Yes, you could about guess my age (I now qualify for some discounts!- YES!), as I am definitely experiencing an intensive case of the 'middles'! 

How about you?  Are you experiencing the 'middles'?   Maybe not 'mid-age'- but with the flux of life with Lyme- we can get the middles too.

The Lyme ride can take us up and down in a matter of minutes, many times without much warning as to which way we may go.  This can often lead us to that 'middles feeling'- not being sure if One should step-up, or step-back, or just sit-down-on-the-step!   

One day our mind may say, 'let's go!', but our body says, 'NO!'-  other days it may be the other way around-- our body is ready to get-at-it, but even though we try to move forward- it feels like we left our mind back on the bedroom dresser! 

By nature/design, I am an organizer/administrator/goal oriented kind of person.  The disorder that Lyme brings to my mind, my life- is especially challenging.  I really like planning things out- and having them go along the way I set out. HA!

Lyme has gifted me with challenging being.  Not that the way I am is bad- it's just Lyme challenges it, and when I look past the frustration, I find it is a great tool to learn to let-go a bit more... I don't have to have 'everything' figured out. 

God is the God of order-- He is the One who orders my days, my foot steps. (really, anyone who thinks they know what they are going to do is basically kidding themselves, Lyme or no Lyme!) 

Check this out from James (who was probably also a planner!):

James 4:13-14  New American Standard Bible (NASB)

13 Come now, you who say, “Today or tomorrow we will go to such and such a city, and spend a year there and engage in business and make a profit.” 14 [a]Yet you do not know [b]what your life will be like tomorrow. You are just a vapor that appears for a little while and then vanishes away.

So, what are your plans?  Do you have the 'middles'- and not sure?  Whether you have seeming definitive plans, or you have the 'middles' and aren't sure which-way-is-up right now-  Know this-

The LORD our God, Almighty to Save, King of Kings... He has a plan.  And, His plan does not change.  He has a Way for you, and a will for you-  He knows the desires of your heart (even those collecting dust in our Lyme-locked hearts we are afraid we'll never see again).  Trust in He Who Is Worthy of our Trust.

As we let Him work on our hearts- He will dust things off, and, as is His nature, He will make all things new in time, His time, in His way- 

So do not be discouraged.  He is not done.  He is at work in our lives. He will redeem, and repurpose all these 'middles', and ups-n-downs, we experience with Lyme. 

Keep your heart toward Him, and your eyes turned toward Him... Lyme CAN-NOT steal your future from His hands! :)

[ blessed to be a 'petite' with http://www.caravansonnet.com/; check out her blog and clever craftings!  She will be an encouragement to you!   Also- a magazine is publishing a review of Practical Care Tips for Those in the Lyme Fight  in their next publication (page 40); here is their webpage http://www.chreader.org/

Bless you! 

Psalm 9:9-10  New American Standard Bible (NASB)

[a]The Lord also will be a stronghold for the oppressed,
A stronghold in times of trouble;
10 And [b]those who know Your name will put their trust in You,
For You, O Lord, have not forsaken those who seek You.

Psalm 21:6-7  New American Standard Bible (NASB)

For You make him [a]most blessed forever;
You make him joyful with gladness in Your presence.
For the king trusts in the Lord,
And through the lovingkindness of the Most High he will not be shaken.
 
 


Thursday, April 24, 2014

D3

Last evening I had the great privilege of not only being out of the house, but being so to give a presentation about Lyme Disease. 

When able to do these presentations to educate/advocate/encourage/give resources-  I carry close my dear Lyme Fighter Battle Buddies, especially those that are cheering me on from their beds/couches/floors/chairs at home! 

                                                                   


As I headed out on the road, my mind filled with many thoughts,  slowly a sensation, a sound, emerged to the fore-front of my thoughts.  Suddenly I realized that now that I was  on the tar road and getting up to speed, I had inadvertently had my car in D3 instead D (Drive). 
                                                                    

What I heard was the engine working a bit too hard for the conditions and speed at which I was driving!

As I made the adjustment into D, it reminded me of how often the 'old me' inside this Lyme-ridden body is roaring to GO!  But, the conditions and speed cause me to grind, and be less productive.
 
As a Lyme survivor, and one who wants to thrive- I need to pay attention to not only those desires/my personhood roaring away inside, wanting to GO-GO-GO- but I must be aware of the conditions and adjust my speed and gear accordingly for the long-run. 

Otherwise, I could do more damage, and end up worse off, and able to do less of the things I hunger to do. 

It's not easy to find this balance, and to be disciplined, but it is imperative to longevity and productivity.

What gear are you running in today?   Does it match up well with the conditions, speed...? 
Listen.  Just taking moments to listen, to discern, will have a good pay-off for you. 

Blessings,

Isaiah 48:17

New Living Translation (NLT)
17 This is what the Lord says—
    your Redeemer, the Holy One of Israel:
“I am the Lord your God,
    who teaches you what is good for you
    and leads you along the paths you should follow.

Sunday, April 20, 2014

Ten Things to Keep in Mind When Feasting with a Lyme Fighter

                                                                


1. We can't eat like you.  (We aren't being picky. Some food could actually kill us, anaphylactic shock reaction, or at the least- make us sick for days.)

2. We would LOVE to eat like you.

3. We still want to be a part of the celebration.

4. Much of our celebrations revolve around food.

5. Find out what we CAN eat (usually a short list).

6. Have at least one dish prepared and set out for us on the table with the 'regular' food items (more than one if you can, of course- we may be in 'happy shock' about your doing that for us, so be prepared).

7. Don't point out our 'special dish' to the other guests (only to us so we know it is a 'safe food' for us).

8. Bring the dish to us, if we can't get out that day, and eat it with us (yes, eat the same food we are eating, along with us- like it is 'normal food').

9. Realize, depending on where we are at in our Lyme journey, we may be in grief.  So if we aren't as celebratory as you'd think we would be (after all, we didn't have to stay in bed this day and got to be a part of the celebrating)...keep in mind, we are dealing with a multitude of losses due to Lyme.  And, as with other kinds of grief, the grief waves can hit us out of nowhere- and being with a group of people eating all kinds of tempting vittles can be difficult and overwhelming.  Just let us know: you understand, you don't know how we do it, you think we are strong, you are glad you are with us, cry a few tears with us, give us a hug, show us the dish we CAN eat :)

10. Even if we have to turn down an invitation- let us know you understand, that we will be missed; send something home to us.  And, say you will invite us again-  and DO.



To those who Believe, someday- we will dine at the great banquet, without restraint or restriction :) 

Revelation 19:17  New Living Translation (NLT)

17 Then I saw an angel standing in the sun, shouting to the vultures flying high in the sky: “Come! Gather together for the great banquet God has prepared.

Blessings-


Thursday, March 13, 2014

Orphaned at 54

My dad, at 88 yrs old, passed away from this mortal life into his new life in Heaven a few weeks ago.  This lost left me with a new position, that of being an orphan. 

My mom passed away a few years ago, and as my son pointed out on my dad's passing, "...in a way, it is like losing Oma again too because when Opa was still with us, it was like we still had a part of Oma yet too; now they are both gone." 

This picture was taken early in my dad's hospice care.  Me holding his hand as he neared life's end; his hand, one which held mine at the beginning of my life. I'm so thankful to have had the parents I had.  Not perfect parents, but they were loving and caring.

My dad was one of the best self-managers, full of zest for life into his 89th year, and one of the most resilient people I've ever known.  What a privilege to have walked alongside each other these many years.  And what joy and comfort to know that one day we will be together again, through Jesus, with our Heavenly Father!

Needless to say, I've been 'off grid' in a lot of respects, as any extra energy I could muster was put into caring for my dad.  I had the opportunity to grow more in appreciation for caregivers, and especially caregivers who have to manage their own chronic conditions in the midst of things. 

Along the way, there have been titles and ideas of things spinning in my mind/heart- and I hope to get enough breathing space eventually to write them out to you. 

In the meantime, I'm adjusting to my status as an orphan. 

I'm reminded of this verse,

John 14:17-19

New American Standard Bible (NASB)
17 that is the Spirit of truth, whom the world cannot receive, because it does not see Him or know Him, but you know Him because He abides with you and will be in you.

18 “I will not leave you as orphans; I will come to you. 19 [a]After a little while the world will no longer see Me, but you will see Me; because I live, you will live also.


Blessings-