Happy Friday y'all! A sweet friend of mine loves the state of Florida and I wanted to send her a little something as a gift. As y'all know I also am apart of Adopt-A-Platoon (which supports soldiers who are serving overseas) and I wanted to make them some mini buntings of their home states. For their protection I am only going to show the state of Florida mini bunting that I made for my friend but it will give you an idea! *smiles*
As y'all know I love the twine from the The Twinery and I used one of my favorites, the gold shimmer twine. While I may be far away from my friend I love that little things like this can encourage and connect people! I love the final product & hope that y'all enjoy these pictures!
Have I mentioned how much I love this twine?
I love how in different buntings I make are given a little "pop" by this gold shimmer twine!
Thanks so much for stopping by y'all!! Happy Friday!
{Disclaimer: The information included on this site is for educational purposes only. It is not intended nor implied to be a substitute for professional medical advice. The reader should always consult his or her health care provider to determine the appropriateness of the information for their own situation or if they have any questions regarding a medical condition or treatment plan. Reading the information on this website does not create a physician-patient relationship.}
I have shared before in the Thursday Health Thoughts about how I created an organized health notebook (which you can read about HERE!). Today I wanted to share with you what the different sections of that notebook are!
In The Front Pocket:
*many times there are questions that arise that don’t constitute a medical emergency but things that I want to discuss with my doctor at my next appointment. I keep paper in the front pocket and write down things that I want to discuss including all or any of the following: {I HIGHLY recommend this if you don’t already do this! It definitely creates a better doctors appointment and is one of the things that I suggest to have a successful doctors appointment!}
* new treatment ideas
* diagnosis terms
* reasons for new/worse symptoms
* any other ideas
* new treatment ideas
* diagnosis terms
* reasons for new/worse symptoms
* any other ideas
1st Section: Introduction
* diagnoses (including date of diagnosis and name of doctor who diagnosed)
* how the diagnosis affects me personally (I suggest this because even with the same diagnosis every person is different so this is important to include)
2nd Section: Doctors Information
* I have a separate sheet for each doctor that I see. Each page has the doctors
contact information including address, number (phone and fax), and the nurses information. {Make sure to know the nurses information! I usually talk more with the nurses then the doctors!}
* During each doctors appointment I put notes on that specific page about what
was discussed {This is especially helpful if you have a team of doctors so that you can keep track of all of your information!}
3rd Section: Medication Information
* Pharmacy Contact Information {phone numbers, fax numbers, and pharmacist names} for each pharmacy I have (I have shared this before in a financial resources post, but sometimes it is beneficial to have a couple of different pharmacies!)
* Medication information and list along with dosage and reactions that I have to
each prescription
* Since my insurance reimburses me for some of my prescription costs I put blank Subscriber Health Care Claim forms in this section also so they are easy
to find (look at "in the back section" about envelopes/stamps)
* Previous medication that I have taken is in here (along with what it was used for and dosage) on a list
4th Section: Hospitalizations and Surgeries
* Surgery Information (including dates and hospital information)
* Hospitalizations (including dates, symptoms, diagnosis and hospital
information)
5th Section: Procedures, Tests, and Results
* Many times chronically ill and seriously ill patients have numerous testing done. Because of this it is helpful to keep a chart that includes the test name, test date, what the test was for (if specifically known), results, and information of where tests were done and what doctor ordered the test
* I always ask for a copy of all test reports and I put these in this section also
In the Back Section:
* I keep a health journal of each day so that I can always have a “big picture”
(very important with chronic illnesses!) This has also helped me if doctors have specific questions and I can quickly reference what the last days, weeks, or months have looked like!
* In this back section pocket I also keep several blank envelopes and extra stamps so that it
is easy to mail things out.
I hope that y'all find this helpful! This health notebook has been such a huge resource to me in this journey! Do you use a health notebook? I would love to hear how you organize yours! I hope y'all have a wonderful Thursday!
Happy Wednesday friends! I am excited to link up with Mel, Shaeffer, and Shay for the "What's Up Wednesday" Link up! I have so enjoyed reading these ladies posts and am excited to join in! It was so fun last month to connect with so many other ladies who are doing this!
What We're Eating this Week...
I totally admit that I am eating a ton of watermelon right now. After having so much issues while I fight Advanced Late Stage Lyme Disease, I am so incredibly thankful to be able to have expanded my diet to include fresh greens and fruit again. And watermelon makes me feel that summer is just around the corner!!
What I'm Reminiscing About...
Teaching. Even though I am headed into my fourth year not teaching I still miss it every single year. This time of the year in the south school is closing down, graduations are happening, and teachers are about to get a bit of a break but it is at these moments where I think about teaching even more. I loved spending my summer preparing for the coming year so it is definitely on my mind!
What I'm Loving...
Learning in new ways this past month (as I have been bed-ridden) to delight in the beauty of the ordinary.
What We've Been Up To...
A LOT of resting and sleeping in bed. As many of you know from this update and from my instagram account this past month has been incredibly difficult. Probably the most difficult of this entire journey if I am honest. This was definitely not my plan for these past three and 1/2 weeks, but grace continues to meet me each day.
What I'm Dreaming...
of is is a peaceful and healing summer.
What I'm Working on...
final edits for my book, December Caravan, and a devotional for Lyme Disease patients.
What I'm Excited About...
I continue to be so honored and humbled by the amazing reception of my book, "Praying through Lyme Disease" and love hearing how it is encouraging those in Poland since it has been translated into Polish!
What I'm Watching/Reading...
So last month I shared how I am not a TV person, but someone had challenged me to watch NCIS: LA and not love it. As I shared last month I started out incredibly skeptical but started to love the "Densi" relationship. I now totally admit that I am still watching this and making my way through the series and do like the show. I will keep you updated on my love for it but I do admit that I was incredibly happy when they renewed it for a 7th season... hahaha!
What I'm Listening to...
Honestly, the same songs from last month are still on repeat this month. These past few weeks they have grown even more dear to my little heart. I have talked about the one, Isaiah 40, in this post HERE, and love the music by the Wissmann Family, especially this CD HERE, and cry through Aaron Keyes song "Sovereign Over Us" almost every single day. Each one of these is such a blessing!
What I'm Wearing...
So as some of you know this past year I became a Jacob's Scarves Ambassador and I LOVE the mission of their products and the way that they help provide education for children around the world. Jacob's Scarves has beautiful scarves and items but this past month I have been wearing this "Americana" scarf almost everyday. I love that it is so soft and gorgeous! You can find out more about Jacob's Scarves HERE.
What I'm Doing this Weekend...
We are packing for the move up to NY for the summer and continuing to rest for me to build up strength for my upcoming treatment!
What I'm looking Forward to Next Month...
I am so excited to be going "home" to my favorite place on earth for the summer months.
What Else is New...
On Sunday, June 7th my mom and I are planning to fly out to California for a week so that I can begin my next round of treatment - starting an advanced round of antibiotic shots that are extremely strong. With my herx that has happened this past month I am extremely weak and still struggling to rebound from this. I would definitely appreciate prayers for complete healing, for supernatural strength, and that I would be ready to start this in these next few days. Specifically I would appreciate prayers for an end to the extreme vertigo/dizziness that continues to plague me. It makes it difficult to even sit up and this needs to be resolved asap so that I can be ready to go! I so appreciate your prayers friends!!
I would love to know your answers to these questions friends! Share your thoughts below in the comments!! *smiles* Happy Wednesday!
I am so excited to have Cindy share her heart today about her experience with Lyme Disease. Cynthia Dainsberg, RN, FCN is the author of "Practical Care Tips for Those in the Lyme Fight- an interactive Care Handbook for Those Battling Lyme Disease and Other Chronic Conditions, with Special Notes to Caregivers", which is available through Amazon. She is such an encouragement to me personally and I am so thankful for her willingness to share with us today!
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Taming a Wild Ride
In a few months, I will be
‘celebrating’ four years of treatment for Late Stage Lyme Disease plus 5 Co-infections.
It was a very long road to getting diagnosed, and it’s been long road in
treatment.
Am I well? No. Am I better? Yes, and no. Yes, many of the
symptoms I’ve experienced have abated, or come less frequently, and with less
intensity. Still, as with many of you, as the layers of Lyme are dealt with, in
addition to keeping Lyme at bay and dealing with the body systems it broke… other
issues are uncovered and must be addressed. (MCS, Mold Toxicity,
life-threatening allergies, food sensitivities….)
Much of my journey
has thrown me onto a perceived intense internal roller-coaster of experiences,
and feelings. Thrilled with a day there
is enough energy to do something fun, besides what ‘has to be done in order to
be and do’- a time to be a life participant.
Other days are arduous, with duty magnified and consuming the day- where
I feel I am just working so hard to do the very minimal to survive.
Interestingly, the
days in which I find myself doing life in horizontal mode, still take me by
surprise, and they cause me to get down and to wonder how long it will last
this time to recover, what will I miss this time… I tell friends I’m down today; they respond
with a cheery note and get about their lives.
I realize my being down isn’t anything new to them; it doesn’t take them
by surprise anymore. How nice it would
be to hear, “Wow, it’s happened again?
I’m sorry to hear that- let me do (something) for you to help. And, how can I be praying of you?” Those responses are rare now. As I’ve said,
it’s been a long road.
My tendency is to allow
myself to passively ride along this crazy roller coaster. Of course, I can’t change the majority of
circumstances- but I’ve come to realize that how I view the ride is the
important thing.
Over the past six months,
I’ve come across an ancient practice, discipline, called “Consolation and
Desolation”. This tool was first written about in the 16th century
by St. Ignatius of Loyola in his book “The Spiritual Exercises”. Practicing these, one can go through their
day with more of a birds-eye view of the coaster life, instead of a side-view.
It is an especially good way to put-the-day-to-bed, or start-the-day.
It isn’t so important when
it is done during the day, that is personal, but it can be and important tool,
which used regularly may help stabilize your ride in the world of chronic
illness.
I don’t know about you, but
I’m a ‘bad news first’ kinda person- so I will begin with explaining Desolation. Here is a list by Margaret Silf:
Desolation:
-
turns us in on
ourselves
-
drives us down
the spiral ever deeper into our own negative feelings
-
cuts us off
from community
-
makes us want
to give up on things that used to be important to us
-
takes over our
whole consciousness and crowds out our distant vision
- covers up all
our landmarks
- drains us of
energy
In other words, “What
pulls me away from God? For what am I
least grateful? What drains life from me?”
Continuing on with the
‘good news’, Silf explains Consolation
as:
-
Directs our
focus outside and beyond ourselves
-
Lifts our
hearts so that we can see the joys and sorrows of other people
-
Bonds us more
closely with our human community
-
Generates
balance and refreshes our inner vision
-
Shows us where
God is active in our lives and where He is leading us
-
Releases new
energy
In Consolation we ask, “What
draws me close to God? For what am I grateful? What gives me life?”
(If you need help with
words to express your feelings- just try using your internet search engine and
keyboard in “word list, feelings” or “word list, values”. It can be very therapeutic and cathartic to
find just the right word with which to express yourself.)
The questions Silf gives us
great direction. Perhaps you are a
journaler, and you can incorporate the practice of answering these questions of
Desolation and Consolation in your journal.
Or, you may be like me- a ‘jotter’, making two columns and jotting down
a bullet-point list. Another idea may be
to have someone who is close to you, agree to practice this with you verbally-
sharing these things together… No matter how, or when you may incorporate this
into your daily protocol- I’d encourage you to then follow up your journaling/jotting/sharing
with a prayer- handing all of it over
into the loving hands our Lord.
The LORD gives, the LORD
takes, He Sees, He Hears- He is
trustworthy, and in Him alone is our Hope Secure. We first must make sure we are secure in Him
as we take this wild ride.
I cannot trust in my
circumstances, ideas, feelings- or those of others, to give me hope. But, the
Lord Jesus is Hope, and He has indeed
proven Himself trustworthy over and over again.
Doing the Desolation and Consolation exercise helps me to be less
mercurial, less reactive, and to be more at peace that in all things God is working things out on my behalf, with great depth
and dimension, beyond what I can even imagine.
With Him, I can be authentic and honest about all I am thinking and
feeling, He is safe with whom to share anything; I can give all these things
over into His capable hands…and begin to find more enjoyment in the ride.
Taming a Wild Ride, written by Cynthia Dainsberg,
RN, FCN Author of “Practical Care Tips
for Those in the Lyme Fight- an Interactive Care Handbook for Those Battling
Lyme Disease and Other Chronic Conditions, with Special Notes to Caregivers”,
available through Amazon.com Also some
time Blogger at http://encouragementforlymefighters.blogspot.com/, and on
Facebook at Cynthia Dainsberg, RN, FCN
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Thank you so much Cindy for sharing your heart today! What a beautiful piece of encouragement this is for all of us Lymies and anyone going through a "roller coaster" season of life!!
Time is a very funny thing isn't it? When we are experiencing "good times" in life time seems to "fly" and we can never get enough of it and yet when we encounter hardships we often are surprised at how long something lasts.
And sometimes... well sometimes life is a mixture of both.
And for me, that is what this third spring on this journey feels like. It is the third spring since I have moved home to my parents house suspecting that I was dealing with more than "just" CFS/ME and Fibromyalgia. It is the third spring since my entire digestive system started to crash and I needed IV nutrients. It is the third spring since I gave up my independence, moved back home into my parents home, and then eventually (in the winter) became unable to walk with no explanation. It is the third spring away from the job that I loved (teaching). It is the third spring without chaperoning a senior trip. It is the third spring that I have experienced extreme illness and pain. It is the third spring that I will spend time in a city that I grew up in but don't have close friends in because I am to ill to put effort into relationships. It is the third spring that I am completely reliant on my parents, family, and friends for help in a variety of ways (including financial resources).
It is the third spring that many people would classify as a time that has been horrendous and as one person said to me yesterday, "I bet you will be glad to say goodbye to this chapter on of your life". Hmmm... yes and no. You see... something changed last year. When I wrote that post about delighting in the ordinary in June I meant what I said. There had been a "change in the wind" throughout last Spring in my heart. Instead of saying "I want this to end... (or) I want this time to be over" I found myself begging the Lord for healing and yet asking for continued wisdom -specifically in how He would use me right now. I was able to come to terms with my wishing for the past and accepting the present and the future. I found the truth of the verse "Godliness with Contentment is Great Gain". I found myself wrestling with the Lord in prayer in new ways- and learning to trust in new ways. I have been so delighted to be apart of encouraging others who are hurting through SEEN Gathering. And I have found that while many people in circumstances like this abandon their faith I have fallen more in love with my Savior each day and have such a passion to encourage others to find their hope in Jesus too.
It is the third spring of spending hundreds of hours with the Lord in prayer in bed because I am to weak to even sit up. It is the third spring of seeing the Lord provide for me daily on this journey - emotionally, physically, spiritually. It is the third spring of seeing who my friends are who are willing walk the dark and difficult roads. It is the third spring of being overwhelmed by the love of family and strangers alike in this journey. It is the third spring of learning who I am in Christ in a whole new way. It is the third spring of this fight... a fight that still has a while to go.
Thank you so much for your prayers for wisdom and for the trip out to California several weeks ago. The Lord blessed the trip and so many prayers were answered and I am so incredibly grateful for each and every prayer. You can read the update HERE of the original plan. To be frank I was excited and felt very strong as I went into this plan. I had recently been able to do a number of things that I hadn't been able to in years (like walking, pilates, eating a more well rounded diet, etc.) and I felt ready to continue to move forward. But like many things in this journey things always don't go as planned. Remember when I picked the word "mettle" for this year? I think the Lord was preparing my heart for this intense fight. *smiles*
I am not going to lie. The start has been incredibly difficult. If we are connected on instagram then you know that I alluded to the fact that the last six weeks have been difficult, and the last 14 days have been extremely difficult as one of the items that I was taken has caused a herx reaction that has rendered me completely bedridden since two weeks ago (not even able to sit up). These days have been painful, long, and quite difficult. And yet, this is the battle. The battle to get well and to fight to beat these diseases. I well up with tears though at the goodness of the Lord. I have a wonderful doctor and medical team and they are fighting this journey with me. I have amazing parents who lavish love and encouragement on me. I have a lovely grandmother who spends hours upon hours in prayer for me. I have sweet friends who have never walked away and have supported me whole-heartedly in this journey. One day at a time friends (and sometimes one minute at a time) we will take this fight. The Lord is with me. He continues to provide wisdom and direction- even as recently as the end of the last week as blood work came in and we learned some new news. Surprising to me but not to the Lord. He is NEVER surprised by any of this. And friends, "There will be a lovely ending to this story of frustration, something worth all it has cost." (Amy Carmichael)
So I continue on one day at a time as I face each new day in this third spring. A spring that has been filled with different plans then I originally thought and filled with a battle of a lifetime for me. A spring that I know the Lord will provide for me again- in miraculous ways. A spring of trusting the Lord who knows my heart and knows the way I will go. A spring filled with days of falling more in love with my Savior.
As I continue on in this third spring I cling to these beautiful verses in Jeremiah:
"The people who survived the wars have found favor in the desert. The LORD appeared to me in a faraway place and said, “I love you with an everlasting love. So I will continue to show you my kindness. Once again I will build you up, and you will be rebuilt, my dear people Israel. Once again you will take your tambourines, and you will go dancing with happy people. Once again you will plant..."
-Jeremiah 31:2-5-
Once again dear friends... once again I am starting the third spring looking to the Lord and His love and knowing that He will have the best in mind. What a good and amazing God He is. Thank you so much for all of your continued prayers for me on this journey. Every single day I see the answers to each of them in a thousand different ways. (P.S. I am horribly overdue at a thousand thank you notes for all of your support from my go fund me page and terribly behind on phone messages, emails, etc. Even just writing this post has taken me several days. I appreciate your patience and understanding as I work to return these during this difficult health time. Your love and understanding is a gift.) Please keep praying and thank you so much for all of your love and support on this journey.
With lots of love friends,
Y'all I am so humbled and excited to share that I received word this morning that out of 8 MILLION paper back books, "Praying through Lyme Disease" is currently ranked 99,513 on Amazon!!! It is unbelievable to me that for such a little book it is ranked so high!!!! I was speechless when I found this out that after only a couple of months on the market (and for being such a "niche" book) it was ranked this high! THANK YOU so much for spreading the word on this book, for purchasing it, and for being so supportive of this journey! My prayer is that every person reading this book will be drawn closer to the heart of God if they are suffering with this awful disease or are supporting a loved one suffering through this disease. Would you join me in that prayer?
Thank you again! If you are looking to purchase the book you can buy it where books are sold and find it on Amazon HERE.
Thank you again! Happy Friday Friends!
Choosing what we do with our time is one of the most important decisions that we make everyday. I am sure that many of you have heard quotes, sayings, etc. based on how important it is to make wise choices with our time as we never know what the future holds. I completely agree with that, but even more so I have been contemplating how to spend my time in this season of life, in this very hard and difficult season.
In the difficult and dramatic seasons of life it can be easy to whittle away time with things that aren't that important. Perhaps even more than when things are going "good" in life, there is a temptation to "veg out" and "disappear" when life gets more difficult. I have seen and been tempted myself on really difficult health days to veg out and spend my time on social media and just scrolling through countless pictures of people's lives who seem "perfect". But honestly I am learning a really hard but important lesson in this season.
I am learning the lesson of choosing to be wise with my time no matter the season.
I was stopped short this past week by some verses in Mark 14 which state;
"They went to the olive grove called Gethsemane, and Jesus said, "Sit here while I go and pray"...Then He returned and found the disciples asleep. He said to Peter, "Simon, are you asleep? Could you watch with me even one hour? Keep watch and pray sot hat you will not give in to temptation. For the spirit is willing, but the body is weak. Then Jesus left them again and prayed the same prayer as before. When He returned to them again, he found them sleeping, for they couldn't keep their eyes open and they didn't know what to say.."
-Mark 14:32-39-
It has occurred to me through reading this passage a couple of important things. First, our enemy is alive and at work in the world and we live and operate not only in the things we seen but in the unseen. One of the ways that we are easily distracted by accomplishing things that God would have us do is through "tiredness" and in "vegging out".
Second, I want to share that I definitely think that being tired and needing rest are real things! Jesus talks in scripture about resting in Him. Fighting two serious illnesses leaves me often physically exhausted and yet I am challenged to admit that I seem to be able to find time to idly spend on social media but sometimes struggle to put energy into memorizing scripture. I am humbled to acknowledge that I might spend hours watching TV to help me on difficult pain days as I am forced to lay in bed, but struggle to read and meditate on scripture. And the list goes on and on... My question for you would be what are ways that you "veg out" but could use the time we are given wisely?
Going through a difficult season in life is not an excuse for us to be given a "free pass" with our time. Instead, we are challenged to acknowledge that there are days that are too dark for those of us that are suffering to see light, yet God is light. He brightens the path before us and before each step that we take.
"Arise, shine, for your light has come, and the glory of the Lord rises upon you. See darkness covers the earth and thick darkness is over the peoples, but the Lord rises upon you and His glory appears over you."
-Isaiah 60:1-2-
There are experiences that are so extreme that they crush us and we struggle to have hope. But let us find our hope sweet friends not in "vegging out" but instead in the Hope that will not disappoint us.
"I pray that God, the source of hope, will fill you completely with joy and peace because you trust in him. Then you will overflow with confident hope through the power of the Holy Spirit."
-Romans 15:13-
There are days where the valleys that we are in are seem so deep and difficult that it seems that we will never find relief. But it is in those valleys that the Lord meets us in new ways that we never would have experienced had we not been in them. In those valleys we see the love of the Lord in new angles and see him at work in new ways then we ever thought possible.
"I will lead the blind by ways they have not known, along unfamiliar paths I will guide them; I will turn the darkness into light before them."
-Isaiah 42:16-
I urge you sweet friends to not ignore or try and pass by the hard seasons by vegging out, instead let us dig into scripture and press on to know our Savior in new ways. Let the truth of His word fill our hearts as we wait on Him to answer us in our struggles. May His hope fill our hurting hearts like nothing else can because He will answer us when we are in distress.
"Oh, that we might know the Lord! Let us press on to know him. He will respond to us as surely as the arrival of dawn or the coming of rains in early Spring."
-Hosea 6:3-
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