The Lyme Diaries: the emotional side of Lyme Disease

Although I speak often about Lyme Disease here on the blog and share snippets of the journey on my instagram, there is a very real topic that has been close to my heart and part of an active conversations among my lymie friends... the emotional side of Lyme. I have alluded to a couple of things in this space but never really delved into this topic in full detail until now. I think just the writing on this topic took me a while to process through my thoughts and feelings but I do pray and hope that it is an encouragement to other lymies and their loved ones! 

Lyme Disease is incredibly emotional for the one walking through the journey. There are many reasons for this but below I just wanted to share a snippet of a few. Friends, when you think of your friends with Lyme Disease would you pray for them about these things? Lymies, I know how hard this topic is so hopefully you can simply pass on these thoughts to ask for prayer on these subjects! Today I am going to be sharing things that make Lyme Disease emotional and next week will be sharing some tips on how to deal with the emotional side of Lyme! So here are the things that make Lyme Disease emotional...

(1) The Difficult Path to a Diagnosis. In the introduction of my "Praying through Lyme Disease" book I shared the following:

"The book that you hold in your hand has been written from my heart. I found out I had Advanced Late Stage Lyme Disease the day after my 33rd birthday. For the previous six years prior to that day I had experienced a myriad of intricate and confusing health symptoms that never made sense to any doctor. I had spent hundreds of hours traveling across the United States talking and consulting with some of the best in the country. No answers came and I was eventually told that either (a) this was “in my head”, (b) I had a very “complex case” of Chronic Fatigue Syndrome (for which I had been diagnosed for) or (c) “stress was contributing to these issues”. Finally, after seeing 273 doctors in one year, seven years of searching, hundreds of invasive and painful tests, and thousands of prayers, I was correctly and accurately diagnosed with Advanced Late Stage Lyme Disease. While my family and I rejoiced that there was finally an answer, I also experienced a range of emotions as I was furious with the medical community and overwhelmed with where to go from that point on."

Unfortunately, for many their journey to a diagnosis is a MUCH more difficult path than even I experienced. Many spend years and decades going through hundreds of painful tests, countless misdiagnosis' and spend thousands of dollars trying to understand what is going on in their body. This process is extremely lonely, scary, frustrating, and demoralizing. 

(2) After the diagnosis. I shared a little bit about my journey after the diagnosis of Lyme, but for many patients this time is a confusing time of trying to understand new lingo, new medical jargon, and make decisions that are best for their health. Many times patients start off going in one direction in their journey but complications and/or issues with co-infections cause a patient to make a turn in their treatment plan. This is often very confusing for outsiders to understand and many patients experience criticism or unhelpful/unwelcome/unsolicited advice from those who do not understand Lyme Disease. It can be incredibly difficult to be fighting for your health while dealing with all of these complications. 

(3) The Long and Winding Road to Healing. Two weeks ago I shared about the long and winding road to healing that lymies experience. 
The process is long, draining, and emotional. You can read more about it HERE. Unfortunately, many loved ones and friends have no concept of the time, energy, and determination it takes to beat Lyme. This unfortunately can lead to number 4...

(4) Loss of Friendships & Loved Ones. Whether it is due to the long road to healing, the lack of understanding about Lyme Disease, or just the general way our society wants things "instantly", it is an unfortunate and disappointing reality that many people walk away. I hate hearing about it among my lymie friends, but the sad truth is that I have experienced this myself. It is a painful experience and one that has to be brought before God often as you walk through it. 

(5) Hurtful Comments. In this journey I can honestly say that there have been thousands of hurtful comments that occur. Many times these comments come from "well meaning" people who are trying to help but they are nonetheless hurtful. Just recently I received some unsolicited advice about how long my treatment was taking and how I had allocated funds on my "Go Fund Me Page". I was shocked, hurt, and honestly it brought me to tears. I am so thankful for beautiful friendships that have walked and prayed with me through these situations, but many people do not experience this sense of comfort. This can definitely create even more isolation for the patient. 

(6) Lack of National Recognition. Lyme Disease (including Chronic Lyme) has been loosely accepted by some of the medical community since the early 1980's. Unfortunately at this point in time (practically 30 years later) not a whole lot has changed. Yes, it does depend on the state that you reside in, but many places, including the South, where I spend 1/2 of the year, does not recognize Chronic/Late Stage Lyme Disease as a "real thing". Case in Point: I went to my General Practioner here in the South just a little bit ago and was told, "you are still fighting that? Honey, those people are lying to you because it doesn't exist. What test did you get done again to prove you have Lyme? Are you sure it is reliable??" And honestly, she said it nicer than other ways I have heard it put. This lack of national recognition and acceptance makes this fight a doubly hard thing to deal with. Patients are not only trying to fight for care, but often have to explain exactly what Lyme Disease is to the people who are supposed to hold knowledge (doctors). This is incredibly emotional. One of the hardest things can be having nurses or doctors who are friends. I have several lymie friends that hear from friends "it really can't be Lyme". SO discouraging and emotional for the patient. To take things a step further... there are limited walks, limited events, limited fundraising, limited commercials, limited everything because there is a lack of national recognition for this disease. 

"At a recent Lyme Disease conference it was stated that "Lyme Disease is the growing epidemic and health crisis of the 21st century and that "in the fullness of time the mainstream handling of Chronic Lyme Disease will be viewed as one of the most shameful episodes in the history of medicine.
-Praying through Lyme Disease-

(7) Physical Side Effects. Call it "vanity" or whatever you would like but the physical side effects of fighting this disease can be emotionally difficult. For example some patients lose a ton of weight and become gaunt, while others gain  a ton of weight. Some patients react to medicine with invisible side effects while others break out with extreme acne or have incredibly bad breath. Some medicines make your teeth turn yellow, some make you lose your hair (or it turns white). Your complexion is not the greatest, and your hair looses its "life". Some patients suffer from severe dry skin, while others struggle with oily skin. Yes, in the scheme of fighting for your life this is not a big deal, but as a woman these things do affect your emotional outlook. 

(8) Loss of Job/Ability to Hold a Job/ Loss of Profession. Like myself, most Lyme Disease patients are not able to work. This causes a ton of stress but also emotionally affects patients differently as they fight to figure out their "place in the world". I will never forget one time when someone said to me, "I would love to be you and get to take naps all day and not have to work." It was probably one of the most hurtful things that I have ever heard. Let me speak for ALL Lyme patients when I say that (a) I don't know one who wouldn't love to be able to have the ability to have a job, (b) Many miss their former lives/jobs tremendously (myself included!), (c) many of us don't even watch TV due to not being able to handle it or, like myself, don't like it that much and (d) Many are fighting their hearts out to get back to "normal life". This is not a vacation. We are fighting for our lives.

(9) Financial Stress. In many of my Notes from the Porch update posts I have shared that one of the most humbling aspects of this journey has been asking for financial help from friends, loved ones, and strangers alike. Until you have had to do it you honestly have no idea how humbling it is. It is simply degrading. And yet, as I explain in my post, "What is Lyme Disease?" financial resources are extremely limited for the lymie:

"Money that most patients (like myself) did "OK" with for the first five or six years of wandering the long trail of finding correct answers. But after that time period (and for some it is a much shorter time frame) money is not something that just continues to "come in". It has been spent (wisely, I would like to clarify) on finding answers, traveling to doctors across the country, treating a  mis-diagnosis, and on numerous treatments (most alternative so insurance does not cover it). ALL of these things add up to thousands and thousands of dollars. Like myself, most Lyme Disease patients are not able to work full time and those that have to struggle to survive day to day. Without a set source of income bank accounts, savings accounts, retirement funds, etc. are quickly depleted. I have been asked by hundreds of people- "didn't you save for a rainy day"? Or... "What about your savings account?". I am going to be incredibly honest here and share something very personal. I had a wonderful savings account (I was a Dave Ramsey's graduate *smiles*) that by year three of this "adventure" was being drained and then at years five and six was completely depleted. (Just to give you a slice of a picture I have spent in the last seven years approximately $54,000 on medical issues, supplies, supplements, travel to doctors, etc. desperately trying to get well!!) I, like most other Lyme Disease patients, are quickly loosing any "saved money", savings accounts, retirement accounts, etc in the desperate fight to get better. Many patients like myself have limited funds and to answer the questions that I am sometimes asked- no I do not know where the resources that I am going to need for today and the rest of this week let alone the months and years ahead (until I am able to work full time again) will come from. I am a christian who is madly in love with her savior and have learned to trust that He will always provide for me - each step of this journey. "

I shared this post last May so almost 10 months later that number of $54,000 has grown. Grown due to a thousand different reasons and I have spent in the last 10 months alone approximately $14,000 (plus the donations that have been given to my "Go Fund Me Page". Where does it go you might ask? For example this trip out to California for the necessary appointment will cost approximately $1200. Traveling to appointments are not cheap, appointments are not cheap, and everything is expensive. 

This topic alone has caused me more stress then fighting the disease itself. 

All of these items and more make up the emotional side of Lyme. Thank you so much for reading today friends! I am so excited to share next week with y'all some tips for dealing with this emotional side of Lyme! Keep fighting Lymies!
 Happy Thursday!


Ten Things I learned From Prom

A couple of days ago I received a text message from a precious former student who is  getting married in a few short months. She said, "remember how anxious I was about prom - about the hair and the dress? Well imagine me in wedding mode! hahaha!". I had to laugh as I remembered exactly what she was talking about and remembered myself freaking out about similar things in high school! 
As I read that text I realized that as we approach prom season I learned a lot of lessons from my years of attending. In addition to the four years that I went to prom when I was in high school, (no, I was not that popular girl ... at my high school prom included everyone from 9th through 12th grade *smiles*) I also went to prom six additional years as a teacher chaperon and learned ten important things.
First, there is no need to wear hot neon pink (with sparkles) to important events... like I did my freshmen year of high school. *sigh* I would like to blame this on the "era" but I don't think I can! hahaha! SO awkward.
Second, we ladies love to dress up. Going as a prom chaperon gives you an excellent excuse to do so and gives you the perfectly acceptable opportunity to wear a crown (outside of becoming a princess).
Third, prom is the perfect excuse to examine (as a teacher) what students are your favorites and to choose to laugh in the midst of fear. Case in point: one of the proms that I was a chaperon at was held at a facility with tons of windows and no basement. Unfortunately in the midst of the romantic endeavor a tornado hit our area. It was overwhelming to think of protecting over 200 students and yet (after the danger had passed) all of us had some great laughs and memories!  {I was just kidding about the favorite students part... sort of...}
Fourth, knowing how to dance is very important.
And if your students don't know the moves to a song (aka. Cotton Eye Joe) it is very important to teach them. {Yes, this did take place in room 214 one day.}

Fifth, being told that you look beautiful and receiving a hug are some of the greatest gifts in the world.
Sixth, even as an adult you will long to "be asked to prom", "to be asked out for something special", etc. AND you truly will thank the good Lord that you didn't get your wish of going with "that" boy you had your heart set on back in high school.
Seventh, Coco was right: a little black dress that you love is important to own.
Eighth: When your hair doesn't turn out right for your junior year prom your dad is truly your hero for calling a new hairstylist to do a completely new hair do just so you feel beautiful. Whoever said the little things are not important in a father-daughter relationship was completely wrong.

Ninth: It is ok to break the "dress code" rules. {At one prom I chaperoned for I was asked to dress like a "flight attendant" ?!? Do not ask me why I didn't ignore this "rule" and dress in a cute dress (like all of the other chaperone's did). Lesson learned.}
Tenth: Thankfully fashion does get better with each generation... sorry mom!*smiles*
What about y'all? Did you go to prom? Any fun lessons you learned?


Notes from the Porch (thirty-two): prayers for wisdom

"But if any of you lacks wisdom, let him ask of God, who gives to all generously and without reproach, and it will be given to him."
-James 1:five-

Thank you so much to all of you who have been praying since I posted my last Notes from the Porch update. I am so grateful that you have covered me (and some of my family members who were also in the hospital) in prayer. Thank you so much!!

As you can see from the title post of this blog I would appreciate prayers for wisdom. I am traveling out to California this weekend and have a very important appointment with my doctor on Monday morning. This appointment will include the plan for the next several months and what we are going to do next. We will be discussing the plan for the coming months in regards to a PICC line and additional oral meds. Honestly, as time grows closer this is (obviously) on my heart and mind constantly and I am a little apprehensive and anxious to hear what the next plan will include. I so appreciate your prayers for this and for my little heart.

Another thing that I will ask for prayer for is my travels. After being so sick a couple of weeks ago (and still recovering) I am a little apprehensive about the trip across the country by myself. I am so glad that we have a God who is always with us.

Finally, as I mentioned on instagram yesterday, I would covet prayers for additional financial resources for this trip and the coming trips that will be needed for medical treatment. Some of you have asked what the easiest way to donate is and it is through the "Go Fund Me Page" that you can find below or on the left hand side of the page! 

I am so grateful for the generous donation by the Warren's. Thank you so much Warren Family. I was amazed by your generous donation. It came at the perfect timing. Truly this was a gift from the Lord. 

Thank you so much for all of your prayers and support y'all! You are a blessing!
With Lots of Love,

"The Kinfolk Table" Cookbook Giveaway


Hannah at Just Bee // Courtney at Familiar Friend // Betsy at Heavens to Betsy Rebecca at Caravan Sonnet // Laura at According to Laura Jean Abby at Winstead Wandering // Stephanie at Sustaining the Powers // Emily & Sydney at The After Hours Chef

Happy Monday! I've teamed up with some other amazing bloggers to offer you the chance to win your own copy of "The Kinfolk Table" cookbook! "The Kinfolk Table" is a hardcover book full of beautiful pictures, wholesome recipes, and heartwarming stories of people's lives around the world. It doubles as a cookbook and a gorgeous coffee table book. :) We're very excited about this opportunity to bless someone with a great product. Entering to win is super easy - just check out the options below! Best of luck!


for the love of mini-albums

Ever since I was a little girl I have had a love affair with mini-albums and mini-journals. One of my favorite Christmas presents for my sister was a mini-album (shown above and below) of 25 wishes I "wished" for her. I loved spending the time thinking and praying through different wishes and prayers and loved adding in precious pictures that brought back many special memories and laughter. 
One of my favorite things about mini-albums are that they are so personal and can be easily displayed and carried with you.
I have also found that mini albums can be a sweet present to someone going through a difficult time.
One of my favorite mini-albums that I ever created was a "mini teapot album" for a friend who was going through a particularly difficult time this summer.
When I was teaching I loved to create mini albums or mini books for the girls Bible Class that I taught as a special little gift. Often these books looked different depending on the class but I loved to try and give a little mini-gift that they could take with them.
Mini-albums are so adorable and can be created for a ton of different occasions. 
If y'all have been around the blog for a little bit then you know that two of my favorite shop items are two Christmas mini-albums. Both the "Merry and Bright" and the "Homegrown Christmas" mini-albums have been best sellers in the shop and they are always a favorite of mine to make!
Last year it was so fun to create two engagement mini-albums for two of my sweet friends. 
And two years ago it was so fun to create mini-albums as swag gifts for a blogger meet upHave y'all created any mini-albums before? Have they been for a trip or a special occasion? Would love to hear about them! 

Hope you are having a wonderful Saturday friends!


the Lyme Diaries: One Day at a Time

Happy Thursday friends! Last week in my Thursday Health Thoughts post I shared about the long winding road to healing with Lyme Disease.To be honest it was one of the most difficult posts to write just because it is hard to come to terms with how long of a journey that this is. At the same time I received numerous emails from Lymies asking how to emotionally handle the journey. I don't have any "wonderful" advice, as I have shared numerous times on here and on instagram how difficult this journey truly is, but I have learned a few tips that I wanted to share today. One of the biggest pieces advice that I give to anyone who has been diagnosed with a chronic or serious illness it to take one day at a time. Here are some thoughts on how to handle the rough days and how to take the long winding journey to healing day by day. 

  1. Be upfront and clear with your limitations – no matter the response. This was  definitely one of the hardest lessons for me to learn because at the beginning I wasn't even sure what was completely going on with my body let alone trying to explain it to others. In addition when I first started expressing what my limitations were to those outside of my family I did not receive the support that I was looking for. I won't lie. There have definitely been tears behind the scenes. I remember last summer when I had really wanted to see some friends and knew that their visit would coincide with a dentist treatment that would sideline me for a couple of weeks. I tried my hardest to express this but it wasn't understood. The day after the dentist treatment (when I was very sick) I received a text message stating, "we would love to see you - just to say a quick hello and give a hug". I replied back it wasn't possible and reminded them of what I had stated before but the text message I got back was anything but supportive. In fact it turned the tables on me that we hadn't been able to see each other in a while despite the fact that I tried to set up times before this appointment. I share this story simply to say that I do get it. It can be difficult when there is a lack of understanding. Despite this I am so glad that my family and doctors have continued to encourage me to keep politely but firmly stating limitations and barriers and overtime I have learned that those that love you will support you and understand these limitations in your health journey.
  1. Accept help
  1. Find specific things that your family and friends can do to help you. The difficult thing with a chronic or long term illness is that many people do not know how to specifically help you. A friend of mine who struggles with extreme back pain due to a surgery that went wrong finally took her friend up on her offer to do her laundry. She realized that this allowed her friend a way to help while also helping her accomplish a task that caused her pain to flare up and could literally put her in bed for days. Personally, I have been so grateful for my dads help in taking care of Scamper with his litter. There is no way that I could change the heavy litter and this has been a blessing to me!
  1. As hard as it is be vulnerable with your tribe and the people in your code. This prevents lots of awkward issues from occurring down the road. A "funny" story that one of my friends shares is that when she went to meet her boyfriend's family for the first time she was embarrassed to share with them (ahead of time) her food allergies. She asked her boyfriend not to also. Due to this when she arrived she then was embarrassed to have to share that the meal that his mother had spent a day making included all of the foods she couldn't eat. My friend had this happen a number of years ago and is happily married to this man and loves her MIL but as she says, "it would have saved me a lot of embarrassment if I had just been vulnerable at the beginning instead of after I arrived". No matter what it is that causes you to feel vulnerable whether it is sharing about food allergies or whatever take the risk and know that those who love you will support you throughout this journey.
  1. Be the best friend and family member that you can be while understanding that you are not the same person that you were before illness changed you. Send birthday cards, connect with people on facebook and other social media connections, and make phone calls when you are able. Stay connected to your tribe as best as you can. I get it. I really do. There are so many birthdays and anniversary's and special occasions that I miss because in "crazy sick world" time elapses and morphs. Do the best you can. Those that love you will accept that you are still you.
  1. Understand that this is just a season. So many people that I meet who are chronically ill or are going through a health crisis used to be the people that were the ones that were coming to the rescue and able to do things for their friends. Unfortunately illness can change that but coming to terms with your illness, adjusting and adapting to a new way of living, and finding a new path will only be a season. Take one day at a time realizing that this is not forever.
  1. Be patient and Choose Your Timing Wisely. Understand that your true friends and family do want to understand the health lingo even though often they have no idea what words means. Give them a chance to understand. Sometimes you have to explain things a thousand times but remember these people really do care and want to understand. (Side Note: Pick times that are appropriate to try and talk about serious health things. You might want to talk about it the moment that your hubby gets in the door from work, but it might be best to wait a few moments. *smiles* In our day of "instant technology" it can be easy to just start sharing everything over a text message. Sometimes, this really is not the best way to share things. *smiles* You get my point. Be patient and choose your timing wisely.)
8. Acceptance. For every person this is going to mean something different but Amy Charmichael was right:"In Acceptance lies peace".

9. Let friends go who are not willing to walk this road with you. It is a sad reality but as I have shared before on the blog, it is a reality in "sick world". Sometimes people just can not handle sickness. I remember at the beginning of the journey (about a month after I had been diagnosed with Cancer) I had a guy (who I had been a friend for over ten years) tell me that he "just couldn't handle it". Sometimes it is less dramatic than that with people who just stop calling, stop returning messages, or just "drop off the planet". Friends, it is okay. Yes, it does hurt, but if we focus on that alone we can miss the immense blessings of others and the unexpected blessing of illness. Wish them well, let go of bitterness and walk the road in front of you with dignity. Stick to the Code. {Yes, I did feel like I was talking about a Pirates of the Caribbean movie right then. *smiles*}

10. Do the best you can to attend and be present for important events. Even if you don't look or feel the best people love you not what you look like. I remember attending a dear friends wedding a couple of years ago. I looked anything but "good". Imagine my surprise at learning that people love you and really don't care. In our society we often think that we have to "look a certain way" to enjoy events or people will pity us. Your true friends and loved ones are going to be glad to see you, wheelchair or walker and all. Do the best you can to attend important events. People love you and want to see you. 

11. Choosing to be Happy is a form of Courage. In one of my most read posts I addressed the topic of answering the "but you don't ACT sick" statement. Throughout this journey I have learned a very important lesson. Choosing to be happy and to find the joy in everyday is a form of courage. To me it is a way of saying, "take that Lyme Disease and Cancer". To me it is choosing to live. 

Do you have any tips for taking "one day at a time" when fighting a chronic or serious illness? Please share them in the comments! I would love to read them!


Cuisinart Pot and Pan Set Giveaway

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ADVENTURESOFCOUNTRYDIVAS.COM was compensated either by free product or payment. I have not been compensated for this post. All opinions and experiences are my own. Open to the US, must be 18+. Confirmed Winner(s) will be contacted by email and have 48 hours to respond before a new winner will be drawn. No purchase necessary. Void where prohibited by law. The sponsor(s) will be responsible for product shipment to winner(s) of the giveaway. Sponsor will be responsible for prize fulfillment. This event is in no way associated with, sponsored, administered, or endorsed by Facebook, Twitter, Google, Pinterest or any other social media network. The disclosure is done in accordance with the Federal Trade Commission 10 CFR, Part 255 Guides Concerning the use of Endorsements and Testimonials in Advertising. For questions, or to have your product featured on ADVENTURESOFCOUNTRYDIVAS.COM you can Email Krista at aocdmedia@gmail.com