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. 

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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

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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.