May is Lyme Disease Awareness Month! As I sit here reflecting about my wife/baby mama/BFF/personal goddess and all that has come to pass, I can’t help but be proud of who she is and what she does. I don’t give her the credit she deserves. Shame on me for that. It seems like the extra stress on her system has made fighting Lyme disease (a daunting task in itself) that much harder.
Nevertheless, her mind is focused on being a mom, and while any Lymie would be focused on medication schedules and the benefits of a ketogenic die, my super hot Lymie is more concerned with our son’s backstroke technique, and the proper form for doing fouette turns for the girls, as if the fact that she is tethered to the couch and the plethora of crappy things she has to endure in a day are nothing more than a minor inconvenience. Of course, that is a far cry from the reality of the situation but what can I say, she is an ass kicker. That doesn’t mean Lyme doesn’t get best of her. Yet, no matter how many times it knocks her down, she wipes her tears away and gets back up.
She has been sick for almost three years, and I think about how much we have learned from the moment her Lyme disease made its first appearance in our lives. From there, we both had to piece together not only what this is, but how to kill it. Like most people in the era of technology, our quest for knowledge began with a Google search. The results had to be filtered and evaluated. Three years later, reflecting on that moment got me thinking. What does a husband, father, caregiver, etc. need to know when they want to help land the first punch against Lyme disease? So the following is, in my opinion, what a husband needs to know when he Google searches, “My wife has Lyme disease.”
You are going to find out what you’re made of.
I heard a man once say, “It doesn’t matter how much beer you can drink. It doesn’t matter how much ass you can kick. A real man measures himself by how he acts during a crisis.” That is exactly what having the most important person in your life diagnosed with Lyme disease is: a crisis. You’re going be tested in every way imaginable, but it’s not going to matter one bit. Why? Because it is nothing compared to what lies ahead for her. You are not the one having muscle spasms, joint pain or seizures. The way you react to the myriad of difficult scenarios that will be placed at your feet are going to have some serious consequences. It is imperative that you keep your head on your shoulders because whether it is distributing medications, or being an advocate for her, you have to be her rock. You are not going to be perfect, but you have to get back up every time you get knocked down just like her. Why? Because she is counting on you.
You will find out what really matters.
Do you remember when you were a kid and something crappy happened to you? They told you not to worry because it “builds character.” Well, if that is true, then my wife has woven moral fiber thick enough to suspend a small planet from. The funny thing about having to watch your wife endure a chronic and debilitating illness is that it strips away what doesn’t really matter from your life. You gain a crystal clear perspective on life, and things that once held a high priority don’t even register anymore. Suddenly your desire to (insert random hobby here) is gone, and that (insert random project here) isn’t even on the radar. Her well-being and the well-being of your kids become all that really matter. I gain more pleasure from binge-watching “Pretty Little Liars” (don’t judge me, we also watch “Game of Thrones”) under a sea of blankets than anything I could imagine. When you don’t have financial means or physical energy to distract yourself, you are left with something very real and tangible.
You will see your friends’ true colors.
As you’re cleansed from nonessential priorities and fool’s pursuits while you escort your wife on the road to wellness, you are going to have to endure another type of purge. That is a purge of people who are just simply too weak to endure this road, and they will choose not to follow where your wife has no choice but to travel. As I said before, crisis will show your true colors and the colors of those around you. You will be shocked at who falls off. Some will not even take the first step with you. Others will talk a big game, and once they realize how long the road actually is, they will bow out. On the flip side of the coin, there are people who come out the woodwork who are in it to win it with her and don’t waiver no matter what. Nevertheless, you will be changing your contact list in the coming years and it will be for the better.
Knowledge is power.
You cannot and will not get a single punch in against Lyme if you blindly follow any physician’s plan. Hell, you will be lucky to get it diagnosed accurately. I believe the only way to beat Lyme is to become a student of the illness. You cannot advocate for someone if you do not understand what they are up against, and she is fighting an uphill battle against an illness that is not understood by the masses at this time. You and your wife have to become the smartest people in the room because of the controversial nature of this illness. You will be criticized by those who do not understand, often under the veil of concern for her well-being. You will have to field the “why is treatment taking so long” or “what if she just went off of all the medication” comments with grace or with fury if you having a bad day. Either way, the results will be the same. Some people get it, others do not. That is just how it goes. The point is, knowledge is power and you will need that power.
You’re becoming a nurse.
As of today I can give IM injections, change a PICC line dressing, administer IV medications, can give a basic neurological exam to check for things like a stroke, understand seizure protocol, know CPR, can mix and measure all types of different medications, etc. So whether you like it or not, you are becoming a nurse. This is part of that whole “knowledge is power” thing I previously wrote about. Your wife is going to need help with treatment at home and a lot of that responsibility will fall on you. When someone you love is sick it can make you feel very helpless. Taking an active role in administering treatment can make you feel like you are in the fight with her.
Get a diagnosis.
Getting Lyme disease accurately diagnosed is the first huge hurdle that you and your wife will have to overcome. We had IGeneX testing to get a CDC-positive Lyme test for my wife. They are expensive but for us it was worth every penny, as it was the first foothold we had against the insurance company to cover treatment. There are other tests to diagnose co-infections that I recommend exploring once treatment has begun.
Find the right doctor.
You don’t hire a plumber to fix your electrical. The same logic applies to healthcare. Just like any serious illness, you need a competent care team to drive treatment. Finding a Lyme-literate medical doctor (LLMD) is usually the first step. They are hard to find and a lot of them don’t take insurance. The good news is that the online community for Lyme disease is very good at helping you access the right medical professionals. Once that is in place, it doesn’t hurt to seek advice on nutrition and holistic care.
The road to wellness is the Eco Challenge, Tough Mudder, Iron Man, and BUD/S training all rolled into one. It will break your heart to watch your wife fight this fight, but I promise you it is 10 times harder for her to watch you from the bed. Her heart breaks for what how this illness impacts your life and the life of your children. There is the pain it causes them, the added stress, the loss of friends, the unsympathetic family members, the ignorant healthcare professionals, etc. All that weight along with the daunting task of fighting a trivial and debilitating illness that is ravaging her body. So you must stay the course… no matter what..
In closing, if you are out there Googling “Lyme disease” in hope of finding some answers for your wife or a person that you love, let me tell you that you are not alone out there. There are many “Lyme Warriors” willing to help her and get her on the road to wellness. I have watched my wife fight for three years and I can tell you without a shred of doubt that I love her more every day. I have folded mentally on more than one occasion due to the stress of it all, but I will never stop getting back up to be her rock because she is worth it. She is the one who suffers daily. She is the one who has lost the most at the hand of this illness. She is the one that endures the most hardship. Finally, she is the one who would be there for me if I was the one sick..