The Love Letter I Wish I Didn’t Have to Write

Sunday is Valentine’s Day. The twelfth one I will spend with my husband. We are so lucky that we met. We are so lucky that we are still together. But, I wish things were different.

Here is my love letter to him:

To my kind, smart, funny, patient and geeky husband,

We met in geek heaven. You were my loyal Samwise Gamgee, I was your elusive Elven Queen. We planned on spending many happy and healthy years together, despite me having a few health problems such as Interstitial Cystitis, Endometriosis and Asthma. We had lots of energy when we met, we had lots of plans.

We had a child quickly due to our age. We tried to have a second one for five years. You stood by me throughout my five miscarriages. You cared for me and our beautiful daughter when I did not have the energy to do it myself. You helped mend my broken heart.

You were there to exuberantly welcome our son. You stuck by me while I sorted out my Pre Menstrual Dysmorphic Disorder post pregnancy.

You always kept up hope that things would get better. That my health would improve enough for us to start planning things and start living again.

Then disaster struck in the form of Lyme Disease. For the last 2 1/2 years, it has been our Mordor. Difficult to navigate, impossible to climb. We felt like little Hobbits alone in the wilderness, and like Samwise, you never left your Frodo’s side.

I wouldn’t have blamed you if you did. I understand the sacrifice you make every single day to be with me. It is very hard on you having to work full time, be my caretaker, and help take care of our two young children.

It sometimes takes its toll. I can see it in your eyes. I can tell how tired you are. I wish I could lift your burden. I can’t wait for the day when I am able to.

You fight to keep hope alive for me and for our children. You strive to keep making us laugh, when you probably feel sad inside. You brought me many meals while I lay in bed for nearly a year. You bring me my medicine. You are my lifeline. You are my best friend.

Sometimes Obi Wan, you are my only hope.

When I grew up, I dreamed of the man on the white horse. I longed to meet my prince, my Sydney Carton, my Romeo, my Aragorn. Men who would love me more than anything else in the world. Men who would protect me and do almost anything for me. Men who would give their lives for me.

But none of those fictional heroes could hold a candle to you.

You prove to me on a daily basis what a true hero is. He is not from a work of literature, he is not a big action movie star, he does not have to be bigger than life.

He just has to be like you. Genuine, compassionate, faithful, flawed, and wonderful.

You prove to me daily what true love is. It is not flowers, it is not gifts or chocolates.

It is loving someone with every inch of your soul, without losing sight of yours. It is moving on from other things, and opening up new doors. It is sharing in their joy, and helping them through their pain. It is helping them see the bright side of things, throughout the constant rain. It is hope for the future, and nostalgia for the past. It is sticking by someone’s side, and making your love last. It is baby steps, and windy roads. It is full of light, and heavy loads. It is endless happiness, and times of tears. It is how I intend, to spend the rest of my years.

I am sorry that I do not currently live up to the expectations that I set for myself as your wife. I did not intend to suffer from so many chronic illnesses. But I did intend to love you with all of my heart.

I do intend to get better. I do intend to make many things up to you when I do. I do look forward to that day.

But for now, I want you to know I notice all of the things you do for me. I know how much you sacrifice to make me happy. I know that you silently pray at night for me to feel better, and for my pain to end. I know you wish you could take it away.

I see it, feel it, hear it and treasure all of it. Even though I do not always acknowledge it.

I am writing this letter to show my appreciation for all that you have done for me, and all that you will do for me.

I hope you know how much I love and admire you. I hope you know how glad I am that I chose you to be my husband. I hope you know what a great father you are.

I am the luckiest woman in the world.

Happy Valentine’s Day.

 

 

To the Woman who Has Just Been Diagnosed with Chronic Lyme Disease

I was you once. Two and a half long years ago. I am a mere shadow of myself now, but there is still life and light within that is starting to shine once again.

When you finally receive the diagnosis of Lyme Disease, it may feel like a huge burden has been lifted from your shoulders. You’ve been in pain and struggling for so long with no answers. Now that you have one, you may think life will get easier, and it may for awhile now that your condition has a name. You feel vindicated. You can now tell people you have Lyme, and are not in fact going crazy.

But slowly the sad reality sinks in. You are not getting better despite the diagnosis. You are not being cured despite the medicine you are given. You are walking on quicksand, and feel like no one is ever going to be able to pull you out.

Days go by, and you struggle to find the reason why you are not getting better. You decide to become an expert on Lyme Disease, but your brain fog and memory loss makes that task almost impossible.

So you take what you are given, try to eat better and look for the light at the end of the tunnel. But, all you can see is darkness.

The spirochetes are invading your body like an alien being on an old episode of Star Trek. If only Scotty could beam you up and out of this place, if only Dr. McCoy could find all the answers.

But, there are no concrete answers, there is no cure. Welcome to the Lyme Zone. A dimension where bright sights and loud sounds can drive you insane. Where finding a doctor who can actually reduce your suffering is like finding a needle in a haystack.

Your family and friends become distant as you are always sick and unable to participate in life’s pleasures. Your relationship with your spouse and kids becomes strained. They miss the old you, you wonder if she will ever come back.

I know what you are going through. I am so sorry for all of your pain. I wish I could take it all away.

I am here to tell you though that it is a long, horrible road, you will feel better. You may not be cured, but you will feel better. Try to find a good doctor or LLMD, and do what they suggest. Keep track of how you are feeling and when something makes you feel even the slightest bit better, let them know, it may set you on the right track. Don’t be afraid to try new medicines/treatments, but listen to what your body is telling you.

You will have a million ups and downs, but NEVER give up. Take each tiny victory as a sign that you are on the right path. Though it is long and hard it is totally worth it.

As hard as it is to concentrate and enjoy things, find something that you can tolerate to pass the time. Take up quilting, learn to play an instrument, volunteer, learn a new computer program, play solitaire, start journaling or blogging. I have always written poetry, and now have some Facebook pages, and blogs to pass the time and release my emotions.

Do what makes you happy when you can, and look forward to the next time you are able to do it. Have something to look forward to, even if it is only once a week. Get out of bed and make yourself look fabulous, whenever you have the energy to.

Watch and follow positive stories and role models. People who provide the light and perform good deeds can help us find the good in life once again. They can help us get through the years of torment that Lyme Disease puts us through. They can help lead the way to a brighter day.

I promise you it will come.

Think it. Believe it. Feel it within every inch of your soul.

And it will happen.

You are my hero.

You will get through this.

You are worth it.

I believe in you, so please start believing in yourself.

I’m on your side.

I’m right here fighting beside you.

You are not alone.

You can do this.

Now let’s get started.

Let’s kick some Lyme ass!

 

Kathy ❤

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Nuts About My Son

 

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