The Ugly Side of Lyme

   

       A family member asked me recently, "Okay, help me understand how I could be on intense antibiotics to get rid of acne for two years and yet doctors refuse to write you a prescription?"

       This is a question Lyme patients have been trying to understand for years. Prior to my Lyme relapse fours years ago I was on a pretty high dose of Doxycycline for acne. And only a year later when I begged a doctor to put me on a LOWER dose of Doxycycline for Lyme they refused citing the horrible side effects it could cause. A life threatening disease was given less treatment and concern than acne! What does this say about what our culture values? Outward beauty is readily fixed even at the risk of supposedly horrible side effects while Lyme patients are left to suffer! How does flawless skin matter more than a potentially deadly disease? It is abysmal that doctors can hide behind their oath to "Do no harm." while the patient could very well die without treatment. 

How long will this go on? When will doctors who refuse to treat Lyme with antibiotics see the double standard? Who will be brave enough to change the guidelines so doctors will be taught the truth? When will insurance companies accept that Chronic Lyme exists and treatment is vital. Change in the medical world is crucial. Lives are at stake so please continue to spread the truth about Lyme Disease and pray for change.

P.S. I recently explained this dilemma to a different doctor and he was in shock at the comparison and that other doctors had scoffed at me. He even commented on how little the side effects are especially compared to what Lyme could do. On another note as much as antibiotics have helped me I am also very grateful for natural remedies. I don't think antibiotics are the only option but I do think they should be available to patients who need them!

The Importance of Lyme Awareness

       In my small online world as a professional homebody I see post after post about "Awareness". Ranging from posts detailing life with chronic illness or changing your profile picture to superheroes hoping to garner awareness for childhood cancer. I have to wonder if the purpose is to educate, to feel understood, or even because you feel guilty for your own good health? And it makes me wonder what kind of awareness truly changes things and when is it absolutely necessary? 

       I have multiple health problems but I only feel dire need to spread awareness for one: Lyme Disease. With CRPS and POTS, I am a bit of a puzzle for doctors to know what kind of treatments will work. It's frustrating and difficult to manage but I can handle it for the most part. Lyme is a whole different story. As miserable as CRPS and POTS can be they are not fatal whereas untreated Lyme has the potential to cause death. Additionally, I have been laughed at, mocked, and told flat out that I don't have Lyme by doctors who should know better. Thankfully I was stubborn and knew for a fact that I had Lyme. However it is far too easy for someone who has undiagnosed Lyme to search for many more months or even years for some sort of diagnosis after a doctor says those sorts of things. By then Lyme Disease is far harder to treat. And while the Lyme continues to go untreated the patient can start to think it's all in their head because doctor after doctor refuses to diagnose and treat Chronic Lyme. Then doubt starts creeping in possibly even denial. As time keeps going the disease starts taking a greater toll on their body. Perhaps now a doctor starts to believe the patient is in great pain but it's easier to write a prescription for pain pills to cover up the symptoms than it is for them to find and treat the root cause of the pain. While the pain decreases the Lyme keeps spreading sometimes silently and other times violently. It's heartbreaking to watch someone suffer all while under the care of a doctor who is supposed to have their best interest at heart. Some doctors may truly care but without proper education how can they help their patients?

       This is why Lyme awareness is so needed. We need doctors to be taught that Chronic Lyme exists. People need to know that you can contract Lyme Disease in almost every state in the United States and in many other countries across the globe. Lyme needs to be further studied and accurate testing needs to be available. Awareness needs to happen so people can get their life back and not have to die because the CDC can't swallow their pride and admit how rampant Lyme is. We need awareness so that a patient is believed by their doctor and can find the help they need instead of thinking their only option is taking their own life. Awareness is crucial so people know what symptoms to look for if they have been bitten by a tick or suspect they may have Lyme. Okay, so awareness is important then how should we go about it?

       Education is key! Someone might google Lyme Disease if your profile picture is a lime green ribbon but what if only non-accurate websites come up? I think we need to post articles from the Lyme community "underground". Patients who have been through it and doctors who treat patients with chronic Lyme. Watching Under our Skin and encouraging friends and family to watch is a great way to spread the word. Asking someone you know who is struggling with Lyme can help you understand and could encourage them that someone cares. Sharing what you have learned (with permission if it's specific to a friend's battle) is a good place to start. Obviously I am writing my story on the world wide web so feel free to share with those you know. It's overwhelming to think of all the work that's involved in getting this information out to the world but it is vital! And together and with God I think we can do it!

More links:

Ten Tips to Prevent Chronic Lyme Disease and other great information.

A short video explaining Lyme Disease

Here is an even bigger symptom list. Keep in mind that Lyme is often misdiagnosed as Fibromyalgia, MS (Multiple Sclerosis), and ALS (Amyotrophic Lateral Sclerosis/Lou Gehrig's Disease). Sometimes anxiety and depression can be the first symptoms and it becomes the only health problem that is diagnosed only to find out later that Lyme was the root cause.

On understanding blood tests for Lyme.

Would love to hear your thoughts. Feel free to post links to other great articles in the comments and I may add them to the list.

Coloring Book for Operation Christmas Child

I like to include a small coloring book in my Operation Christmas Child boxes but I couldn't find the right size this year and decided to make one myself. After my Nana passed away I wanted to continue her tradition of doing two boxes for little girls. So the pages are pretty girly. Maybe next year I'll draw one for boys too. 

Here's a quick step by step on how I put mine together. 

1. Print your pages by clicking here. Unless you have a fancy printer that can print on both sides you will end up with these four pages.

2. Use a glue stick to put these two pages together back to back.

3. Then glue these pages back to back.

4. Lay the pages on top of each other in this order. 

5. Line up the edges and fold in half like this.

6. You can use staples or sew a few stitches Like I did. You can't tell here but I used purple embroidery thread and it added a nice pop of color.

7. You're done. Don't forget to include crayons or colored pencils. :) 

Leaves Free Coloring Page

Fall leaves are all the rage on the mainland but over here...I get to stare at these beauties. So here is my fall coloring page barely making it before the Christmas craziness takes over!

Leaf Printable

And if you're interested in my other coloring pages....

Wild and Free Printable
Maryland Printable
Ocean Printable
Be Brave Printable

10 years

My day started at two in the morning yesterday thanks to my heart fluttering all over the place. I was up so early that I drove Shawn to work before the sun was up. On my way back home the sky looked like a beautiful watercolor painting. I really tried to soak it in as I was so tired and only wanted to complain instead of choosing joy. I set my alarm just in case I fell asleep so I wouldn't miss my doctor appointment. I had a thirty minute power nap and then woke up stressed because I forgot to hand in my log book that went with the twenty-four hour heart monitor (thanks brain fog). I called the cardiologist hoping I could just read off the few things I had written but was told I needed to bring it in. At this point I was close to tears but rushed to get ready so I could bring it in to the cardiologist and still make it to my primary care doctor in time.

During the car ride it suddenly dawned on me that it was the tenth anniversary of my initial RSD/CRPS injury. Tears streamed down my face as I thought of all that had changed in ten years and the things that were the same. And then I got frustrated at myself that I wasn't handling it like last year. But it's a different year with different emotions and that is okay. I pulled myself together and made it to both doctor's offices in time. 

Later I was thinking how different my life would have been without RSD/CRPS. I would have graduated from the private school I loved and that my parents worked so hard at. I would have finished college and probably started teaching. After that I don't know what might have happened.

What has happened though? I got to be homeschooled by my mom. I have many fond memories of listening to my literature books in the car on my way to doctor appointments. I moved to Hawaii because the RSD/CRPS pain got so bad every winter. And most importantly I met Shawn and for that I am so grateful. If I had the chance to go back I wouldn't take it. I am thankful for my life the way it is but I will always hope that I continue to get better!

Wild and Free Coloring Page

I would love to see your finished pages! Use #wildandfreela if you post on instagram. Happy coloring!

Click here to print Wild and Free Coloring Page

Here is the link to the Maryland Coloring Page
Here is the link to the Ocean Coloring Page
Here is the link to the Be Brave Coloring Page

Maryland Free Coloring Page

Summer is nearly over and a new school year is on the horizon. With this in mind, I decided to make a simpler coloring page for kids to enjoy. Here is a coloring page inspired by the state I was born in. Let me know what you think! Happy Coloring!

Click here to print your Maryland Coloring Page

And here is the link to the Be Brave Coloring Page
And here is the link to the Saltwater Coloring Page

Chronically Fashionable

 Fashion has never really been my thing. When it comes to appearance I mostly care about what earrings I am wearing and 99.9% of the time I made them. But when it comes to clothes my number one requirement is comfort. And every piece of clothing has to work for my health requirements. I thought it would be fun to spoof a "What I Wore" fashion post as a chronically fashionable (haha) woman. So here goes nothing...

Monday

Fancy pajama day! On this day everything hurt so comfy and flowy clothes were the answer. Because of the RSD/CRPS my legs always need to be covered. Any wind or air touching can be very painful. Pants are best because I need to lie down often to calm down my heart rate and sometimes that's hard to do in a skirt. I've never been trendy in my life but Palazzo pants are the best...making pajamas trendy one pair of pants at a time!

Tuesday

Trying to look semi professional but also comfy in this outfit. A trend in my outfits is trying to disguise my weight with shirts. My weight is constantly changing and I have absolutely no control over it. People get worried when I look too skinny so I'd rather look bigger to avoid that! Flowy and ruffle shirts are great for this. Maxi skirts aren't as convenient as pants but they are super comfy and keep the wind from touching my legs. Mission accomplished.

Wednesday

After two days of trying to be normal my body decided I needed to stay in bed all day. So here are my true pajamas. Comfy shirt and six year old yoga pants. Winning!

Thursday

Finally some color in my outfits! Coral and navy happens to be one of my favorite color combinations. I love the style of this shirt and I wear it all the time. These pants are the closest I get to shorts. Notice how they're sheer part of the way down? Perfect for staying cool and protecting my legs from unnecessary pain! And the elephants on the bottom are the icing on the cake!

Friday

More color! Such a comfy shirt, I love it! And these linen pants are the best. So soft and perfect for hot days. Oh, and they have an elastic waistband need I say more? And the necklace is made by me and helps dress up the outfit a little more. I have worn pajamas before only to put a huge statement necklace and called it dressed up. Hey, when you're in pain ya gotta do what ya gotta do!

So my fellow chronically fashionable friends....do you dress similarly? Any tips you've learned along the way? I'd love to hear them!

Ocean Free Coloring Page

Saltwater Printable


I hope someone out there is enjoying coloring the pages as much as I enjoy making them. I decided to go with an ocean theme and thought the quote would be a good laugh for my P.O.T.S. friends! Just click the link above to print.

I would love to see your finished pages. Use #besaltyla and #chronicallyhopeful if you are on instagram.

Here is the first coloring page.

Be Brave Free Coloring Page

I created this coloring page for my fellow chronic illness fighters as a fun way to pass the time. Although I think teens and adults alike would enjoy it. Just click on the link and it will take you to the google document.

Be Brave Printable

Feel free to send me pictures or post on instagram using #bebravela and #chronicallyhopeful

Only a Number

I heard from my Lyme Doctor today. My CD-57 numbers are still low. For the past six months my doctor was pretty sure my numbers would be at 60 considering I have been feeling better. Two years ago I started at 21 and then after intense treatment I was up to 37. For the past year and a half I have been in the 30s. And today I am at 43 which is the highest I have ever been. Even so, I am disappointed. After aggressive treatment for two years and consistent treatment for four, I hoped my numbers would be higher and we could at least stay on current treatment or start decreasing the dosage. Unfortunately my number being this low means I will need to up treatment although I am still trying to figure out what this entails.

I would really appreciate prayers for encouragement. Fighting Lyme is getting wearisome. Especially when it doesn't always feel like treatment is working. And while I could try to treat really aggressively I don't know if my body can handle it. Thankfully I am better than I was four years ago. I just wish this battle was almost over instead of realizing there is a lot more fighting ahead.

Emotions and Chronic Illness

Today marks four years since Lyme started raging throughout my seemingly healthy body. I look back at our wedding photos and I hardly recognize myself. Not because I changed so much physically but because inside I am a completely different person. Sure, my hair is two feet shorter and a tangible example of how I have changed physically but what I see is a young woman who had no idea the horrors ahead. Who thought the worst was behind her and was ready to start a life with the man she loves so dearly.

Lyme had been in my system for nearly sixteen years at that point. We had no clue how it was tearing me apart little by little. I had lived with pain from RSD/CRPS for five years. I'd been in a wheelchair and didn't think I'd ever have to go back. However, I always knew it was a possibility. Shawn walked into our marriage knowing my health could fail at any point. When he vowed to love me "in sickness and in health" on our wedding day I knew he meant it with all his heart but I hoped that it would only be a small part of our lives. Instead the day after our wedding my health slowly started falling apart. Turning into a nightmare we never saw coming. As sick and in pain I had been before this was ten times greater.

During those first few months we all hoped that it would be over quickly. I'd conquered pain and illness before and I could do it again. That made it easier to fight because we thought it would all be over soon. And then a year went by and we saw some improvement but a long ways to go. Two years went by and I became worse. More things were going haywire inside my fragile body but we hit the Lyme harder with IV antibiotics and an amazing new doctor on our side. Things eventually improved and I started feeling more like myself bringing us into year three. We could see a better life ahead and then a sprained ankle this March dashed those dreams to pieces.

So here we are, year four. I'm thankful for new treatment and more doctors on my side. But I also feel lost, confused, and tired of fighting. Hope seems to be wearing thin but I know it's there. We know more now than we ever have. Lord willing we can use that knowledge to find the help I need. It's hard to say what lies ahead but I want to walk in hope and joy despite these difficult circumstances. And I hope that one day those struggling with similar illnesses are diagnosed quicker and don't have to walk down this path too. 

The Battle

As I've mentioned before, many doctors are unbelievably rude and condescending toward patients with misunderstood chronic conditions. Lately I have been experiencing more understanding doctors but each time I go into the office I remind myself to believe they have my best interest at heart. The emotional pain I have endured at the hands of "experts" makes this easier said then done. Even when a previous appointment went well I still worry that this will be the appointment that their true colors are shown. But there is hope and I am learning I can trust again.

And then there are the doctor appointments that I am almost certain will go poorly. Infectious Disease doctors are like this, I don't know what they are taught in school but they are so against Chronic Lyme it's ridiculous. I had to see one of them last week but I went prepared for battle. My armor bearer came with me although she is more commonly known as my mother-in-love. If the appointment went predictably horrible either I would be able to muster up the courage to speak against the lies or if all I could do was cry my armor bearer could fight for me.

The Infectious Disease Doctor started spouting off every single lie the CDC had poured down his throat. I knew I wasn't going to change his mind but I also wasn't willing to just take it. I didn't put any energy into my responses. Like when he asked what my symptoms were I said that Lyme has effected everything except my fingernails. Which is very true but it also meant that I didn't have to exhaust myself by listing every symptom when he clearly wouldn't help me.

His response? "Okay, fatigue. So I want to put you on this medication for fatigue. The side effects aren't good though. And then I'll run some blood tests using FDA approved labs. The other labs aren't safe."

In my head I was thinking fatigue is not what I meant, yes the fatigue is bad but I have serious problems everywhere. If I had listened to doctors like you I would not be alive today. And those labs you're mocking, yeah they prove that I am a very sick person! And how about get rid of the infection instead of covering up a symptom!!! But instead I spoke in a rather rude tone and said, "No, I don't want that medication. What tests are you planning to run?"

And you know what it felt good to stand up to an I.D.D. even though that rude tone was basically nothing compared to what I felt inside. It was the first time I ever had the brain capacity and courage to stand up for myself against the likes of him. All thanks to God and my armor bearer sitting beside me.

Of course he ran all the wrong tests and I am still trying to figure out if there is a way I can avoid seeing him to have the results read. I already know what they'll say...absolutely nothing! And then I get an earful of why I don't have Chronic Lyme. It took me a few days to finally get over his daftness. I made a fake award since he should win I.D. doctor of the year according to the CDC. Drawing that award is now on the top of the list of weird things I've done to help myself detox from horrible doctors.  It probably won't be the last but at least I've started to find my voice against Infectiously Daft Doctors!

P.S. I heard from his office today and by some miracle the lab test showed I have Lyme. That has never happened on these tests in my six years of being diagnosed! Usually if Lyme is chronic it cannot be picked up. The doctor said I have a mild case and no treatment was even necessary. What?! Even though this angers me I feel like I won. The test that he believed in should have proved I have Lyme in his eyes. But he is so stuck in his ways that he is unable to say it. So off to Texas I go, where I can get the help I need. At least I know I tried.

Even the Little Things

Life with chronic illness can encompass every area of your life. Even seemingly normal or simple events can wreak havoc on your very fragile body. My recent emergency room trips are a perfect example.

A few weeks ago I started having difficulty breathing at night and also noticed my heart would beat rapidly for little or no reason at all. I have strange and new symptoms all the time so even though I was concerned I knew that there wasn't much that could be done. I kept most of it to myself, but took things a little slower to keep my heart from racing.  

And then one day I got so caught up in a phone conversation that I put off taking a shower till the very last minute. Mind you a shower is one of the most painful and exhausting things I can do. Afterwards I rushed out the door to pick Shawn up from work. The whole car ride I struggled to catch my breath. There was a lot of vog so I figured that was at least part of the problem. When I got out of the car and walked down several steps I twisted my ankle. Twisting anything with RSD/CRPS is not a good thing. When we got home my ankle hurt but my breathing was somewhat better and eventually I fell asleep.

The next morning my ankle felt better but I could barely breathe and my heart really hurt. I had never experienced anything like it and knew I needed to go to the ER. The rest of the story you can read here. All the tests came back normal which is generally a pretty good indicator that the culprit is Lyme or RSD/CRPS. My primary care doctor confirmed that this is the case. Thankfully I am feeling much better although I am trying to be extremely careful of not overdoing it. I mean if "little" things like taking a shower and then twisting my ankle can cause this extremely scary episode then it's a pretty good indicator that I need to be even more cautious than normal. 

Seasons

You have planted me,

Given me roots.

Walked me through a raging river,

And calmed the surrounding waters.

The river once swollen with pain and heartache,

Becomes serene and clear as diamonds. 

Rain falls but the river is at peace.

Drops bounce. They join the river, not consume.

A new season has begun,

Roots are reaching out. 

Closer to the River of Life,

Drifting away from the drought.

No leaves fill the branches,

But they will soon follow.

After all, don't the roots matter more?

They are the heart of the tree.

Spring will arrive,

With the grandest splendor.

Out of brokenness the river will overflow,

And the roots will soak in the healing water.

Only then will the leaves appear,

Slowly but with captivating beauty.

Beauty that starts in the dirt,

And rises with the heavens as it's backdrop. 

When Your Loved One Has Chronic Lyme

This post is for those who have family members or friends with Chronic Lyme. Here are ten things to help you understand what a Lymie needs from you.

1. You are needed now more than ever.

Lyme has changed their life. They are hurting and just trying to stay alive. Reach out to them but keep in mind they may be physically or mentally unable to reciprocate.

2. Treatment is crucial.

Lyme has the potential to do major damage. The sooner your loved one gets treated the better. Try to support them anyway you can in this.

3. Something small can cause significant damage.

Lyme is generally caused by a tick bite. A tick is incredibly small but it has the ability to effect every part of the body. Symptoms range from joint pain to memory loss and everything in between.

4. Memory loss is real.

Your loved one may forget things that were scheduled or even your birthday. Try your best to be understanding. I have forgotten many things and thankfully everyone has been gracious but I still feel horrible every time. Memory loss with Lyme can also be as extreme as forgetting the people in your life. Thankfully with treatment memory loss can get better.

5. Don't believe everything you read.

There are numerous lies about Chronic Lyme. The medical community has not caught up with the times so beware of what you read and believe.

6. It's going to get harder before it gets better.

Treatment does not fix everything quickly. In fact, things usually get worse. It's called herxing. Herxing is extremely painful and frustrating but it is a sign that treatment is working. 

7. Encourage.

This could be as simple as a hug or Facebook message. It will mean more than you realize. My best friend once put together a care package full of things I could do while lying down. She included things like craft items and movies. It meant the world to me and encouraged me to keep fighting.

8. Spend time together.

If your loved one is up for it, try to spend time with them. A conversation may be hard so offer to watch a movie at their house or yours.

9. Healing may take a while.

It's taken me three years to get to the point where I am beginning to feel almost normal. I am still exhausted, in pain, and forgetting things but I am far better than I was before. Even though I am feeling better I still need encouragement. I am tired of fighting, I want this season over but I refuse to give up!

10. Pray

Prayer is always the best thing to do and sometimes it may be the only thing you can do. I am incredibly grateful for all the prayers said for me over the years. 

~~~~~~~

Thank you for reading. Lymies is there anything that you would add to the list? Family and friends anything else you would like to know?

An Open Letter to Yolanda Foster (and some haters)

Dear Yolanda,

Thank you for the attention you have brought to Chronic Lyme Disease. I admire your bravery in fighting this horrific disease and I am so thankful that you choose to be an advocate despite the harsh criticism you receive.

I read this article when I saw it trending on Facebook earlier this week. A few years ago I wouldn't have been able to even read it. I understand where you are at and I am so sorry. I know some days it feels like you will never get any better but please hold onto hope. 

Thank you for all you have done for the Lyme community and for chronic illness in general. You are touching lives even from your sick bed. I am praying for you. 

With love,

Laura

~~~~~~~~~~~~~~~~~~~~

Here are some examples of what you shouldn't say to someone with Lyme Disease. These are real comments about the article I mentioned above. I have heard many similar comments especially from doctors. Skepticism is understandable but kindness is always an option. Also, research is a wonderful tool. 

Dear Stacy.

I assume by "it" you mean Lyme.  Five years ago I could have said that I have Lyme and can still read. But only a year later it started messing with my brain. It caused horrific damage that seems too crazy to believe. But it happened. I truly hope you are one of the "lucky ones" who caught the disease early on. I am sorry you have Lyme and hope you fully recover.

Please try not to judge what you haven't experienced. She speaks the truth, I know because I have been there. Yes, I have struggled to watch television just like Yolanda. There were days that I could only stare at the ceiling. And other days that I could watch television but I couldn't comprehend what was happening. After numerous courses of antibiotics this is not a common occurrence anymore. There is hope.

You mentioned that everyone with Lyme has joint pain. Yes, that's pretty accurate. But I believe Yolanda is trying to talk about the symptoms that most people would never think of. Lyme doesn't only cause joint pain and I am thankful that she is letting others see that.

Sincerely,

Laura

Dear Mari,

Lyme can cause extreme brain fog and memory loss. A few years ago it took me days to write a short blog post. I still don't understand how I managed to write. Some days it was impossible but other days I pushed through it. Most of those blog posts I had another adult read over because I had no clue if it made sense. I suspect Yolanda has done the same. 

As Michele articulated, you shouldn't judge. 

Sincerely,

Laura

Dear David,

Really? A blonde joke? I would suggest doing some research on Lyme. It is far scarier than you could imagine. I wouldn't wish it on my worst enemy. Yeah, it really is that bad!

Sincerely,

Laura

So you have Chronic Lyme Disease. Now what?

I was inspired to write more about Chronic Lyme Disease. Some of this may pertain to other chronic illnesses but for right now Lyme is my focus. I have a few more blog post ideas but I am also open to suggestions. Without further ado, ten things a newly diagnosed Lyme patient needs to know...

1. You are not alone

Some days you might feel like no one could possibly understand what you are going through. Trust me, I have been there. I now have a few "real life" friends with Lyme and have also met some great friends through Facebook support groups. I can't tell you how thankful I am to have met people who truly understand what I am going through.


2. The sooner you get treated the better.

Lyme is a vicious disease and has the ability to effect every part of your body. But the sooner you catch it the easier it is to get under control. Unfortunately for me I was undiagnosed for fourteen years. Which gave Lyme Disease the chance to mess with just about everything. This does not mean that I am without hope though! It will just take longer to get under control.


3. Unfortunately it's going to get harder before it gets better.

With every new treatment the Lyme will fight back. It can be brutal but it does get better. This reaction is called herxing.


4. It could be hard for friends and family to understand. 

Lyme is a mind boggling disease. The best advice I can give you is to try not to hide everything from your loved ones. When I got sick in 2011, I was very afraid to let others see me so ill. But the more I let them in, the more they could understand.

5. It's okay to ask for help. 

I had a very hard time with this as well. Asking for help felt like I was succumbing to Lyme. When in fact the more help I received the more energy I could put into fighting Lyme. Many people want to help, so let them. Living life together is a beautiful thing.


6. Doctors might not believe you.

Doctors are generally taught that Chronic Lyme does not exist. They believe that a few weeks of antibiotics will cure you but this is only true if you just contracted Lyme. In order to get the best treatment you will want to find a Lyme Literate Medical Doctor (LLMD).


7. Treatment can be expensive.

Many insurance companies do not cover treatment and everything adds up quickly. There are organizations that can help cover the cost if you can't afford it. Talk to your doctor about better pricing if you pay in cash. When you get a new prescription call around to several pharmacies to find the best price. Here is a good list on getting treatment with a limited budget.

8. You might change and that's okay!

I am a firm believer that trials like Lyme are a refining process. When bad things happen it's up to you to choose to look at the good instead of the bad. You would be surprised at the things you are thankful for like having the energy to do laundry! You can also be more sympathetic towards those who are struggling in life. I have learned life-long lessons through this horrible disease.


9. Be kind to yourself.

There are a lot of things that you may have trouble doing. Cleaning, cooking, socializing, etc. Know that your job right now is to beat the Lyme. If all you can do today is stay in bed, eat, and take your medication...that is okay!

10. Don't give up

Treating Lyme is a long and difficult process. You may feel like giving up, but please don't. There is light at the end of the tunnel. The progress you see may be slow but it all adds up! Keep fighting, you got this!

Many thanks to my amazingly talented sister for the photos. Trust me folks, you do not want to see what these would have looked like if I was behind the camera. Also, thanks to my family who listened to me talk about my ideas and who posed in photos. 

Herxing

Herxing is probably the worst part of Lyme Disease. Every time you start a new treatment the Lyme begins to viciously fight against the the the new treatment. It is generally a two to six week period of feeling absolutely awful. Not only do symptoms increase but your emotions go wild. Each time I start something new I am scared to find out what is coming. It is a challenge to willingly make yourself miserable in order to get to the end goal of feeling better.

A few months ago I was really struggling with this concept. Why does it have to be this way? And then I realized it is so similar to Christ's life on earth. He willingly went to earth knowing He would suffer. All the time He knew that it was worth it. And I am incredibly grateful for His strength and His willingness to endure that kind of emotional and physical suffering. Obviously, I am not comparing myself with Christ. He endured suffering far better than I ever have or will. But it gives me great comfort knowing that He suffered as well.

Shawn and I face another round of herxing. I have finally stopped antibiotic shots after a year. Can't tell you how happy I am to not have to stick myself with a needle three times a week! And now we are moving on to an oral antibiotic. We know it's a rough road ahead. As Shawn said the other night, " [You] herxing is the scariest thing I have ever experienced." I have to agree with him, it is incredibly scary and painful. And I am so grateful that he is always there for me. Even in the hardest days. For that I am forever grateful.

9 Years

Today I am celebrating nine years with chronic pain. It used to be a sad day for me but now it is a positive day. It's crazy how much I have been through in nine years and yet I am still happy. This is why I can celebrate!

Nine years later, I am sitting in the coffee shop. I can't move my legs but I am not worried, they'll work again soon. Instead of freaking out and calling my husband to pick me up right away, I'll wait a few hours. Why not? It makes me laugh to think that's my reaction but that's what happens after nine years!

I may not do very much but my life isn't boring! There is always a new crazy symptom coming up. And for right now, I'm okay with that.

*The leg thing happened two weeks ago. Don't worry. I'm fine! *