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