Sunday, January 18, 2015

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. 

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