My Game of Thrones Playlist to Get Me Through the Tough Days

I have just been through a year that had me shouting “seven hells” many times. My seven hells this year were PMDD, multiple pulmonary embolisms, anxiety, panic attacks, menopause, lyme disease and interstitial cystitis.

Game of Thrones, and other shows like it have helped keep me occupied and distracted through the pain and heartache that often accompanies chronic illness. I wrote an article about it last year. 

I am incredibly grateful to have made it through this year. I am still struggling and fighting, but am much better than last year. Tonight is the premiere of Game of Thrones and I can’t wait to watch it. Partly because I have been waiting a year and a half for the new season, and partly because it is a reminder that I made it through, I survived.

This morning while making pancakes for my family, it seemed like every song was reminding me of Game of Thrones. Some songs made me laugh, some made me think of certain GOT characters, and others made me feel excited and happy. So happy that I danced in my kitchen for the first time in over a year. I hope you enjoy my playlist, and I hope you dance too.

Here is my Game of Thrones playlist:

1. Another One Bites the Dust by Queen – who will bite the dust this season?
2. Every Rose Has Its Thorn by Poison – last season Margaery and Loris Tyrell were killed by Cersei. I’m sure that their grandmother Olenna will be all thorns this season.
3. Born to be Wild by Steppenwolf – The Wildlings are a huge part of GOT and will have a great role to play this season too as many battle will take place.
4. Back to Black by Amy Winehouse – Jon’s watch has ended and he won’t go back to black, but I’m sure the Night’s Watch will be by his side as they fight the Night King and his army of wights.
5. Pride by U2- this important song was of course written about MLK Jr., but it briefly made me think of the fictional character Ned Stark, who lived his life with honor and pride, and who many still fight for in the name of love.
6. The Rains of Castamere by The National- who could forget the Red Wedding or this amazing/haunting song. What will the Lannisters be up to this season? How many of us souls long to see/hear what they will do?
7. Burden In My Hand by Soundgarden – this song reminds me of Tyrion. He is now hand of the Queen, how will he handle this honor and burden? Will he rise to the occasion once they reach the sands of Dragonstone, or will he drown in alcohol and fall to pieces once again?
8. Dire Wolf by The Grateful Dead – Will Ghost return? Will Arya be reunited with Nymeria? Which sinners and bad guys will the Stark wolves attack? Many have it coming to them.
9. Hound Dog by Elvis Presley – He isn’t high class, but I’m so glad the Hound is back! He prefers chicken to rabbits and has been a secret friend of the Starks. F*ck the king, let’s see what he does this season!
10. Witchy Woman by The Eagles – Cersei was born with a silver spoon in her mouth, and now she has suffered the witches prophecy. Gold are now her children’s shrouds, will her little brother now choke her to death? We shall see.
11. Ain’t No Mountain High Enough by Marvin Gaye & Tammi Terrell – Nothing will stop The Mountain from protecting Cersei, not the Trident river or the Vale of Arryn, and nothing will stop me from watching the Cleganebowl if it happens this season!
12. Smoke On The Water by Deep Purple – this song reminds me of the Greyjoys since Pyke is always misty and smoky looking. It also reminds me of The Battle of Blackwater, and other battles to come. What will be Theon and Yara’s fate? What great battles on the sea lie ahead?
13. Something Wild by Lindsey Stirling – Dany has a big heart and has become wild and powerful, and she is being called home. While her dragons chase the sky, the lights are blinding and her quest is binding. Her maps and battle lines are drawn, will she prevail and ultimately sit on the throne?
14. Simple Man by Lynyrd Skynyrd – I’m on Team Stark and Jon Snow is my favorite. He may be a simple man but he has learned something, and does not live for rich mans gold. He follows his heart and knows what’s in his soul. I hope it leads him to great things and happiness.

This past year I said not today to the god of death many times. I hope you say not today too, and I hope he listens.

Winter is here. Let’s all hope it’s not a long one.

Kathy ❤

Poetologie

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Thank You to the Friends Who Met Me After Chronic Illness

To the friends who have met me after chronic illness,

You may have met me through my kids. You may have met me in the neighborhood. But that doesn’t matter, what matters is that you met me after I became chronically ill- but you still chose to become my friend.

You weren’t put off by my disheveled looks, my wrinkled clothes, my messy house, my tired eyes, my seldom seen smiles. You didn’t judge me, look at me strangely or differently, or walk away.

You gave me a chance because you are a special person. One who can see beyond appearances and chaos, and focus on what is important.

People. Helping others. Being a good person and friend.

You met me after Lyme Disease and Premenstrual Dysphoric Disorder took over part of my brain and made me more anxious, confused and irritable. You met me after I was recovering from surgery and going through surgical menopause. You still supported me after I learned that I had multiple pulmonary embolisms, and didn’t know whether or not I would survive. You met me when I could barely take care of my children, let alone myself.

But, you still stuck around. You still gave me a chance. You still cared no matter what.

You didn’t stop coming around when I could not even make it to the door because I was too anxious to answer it. You didn’t stop calling or texting me to see if I needed anything, even though I could never return the favor. You didn’t stop asking me to do things even though you knew that I couldn’t for quite awhile.

You helped get my young son to school each and every day so that he wouldn’t miss out on anything. You made sure he was safe and well cared for. You made sure he had fun whenever he was with you and your children. You made sure my eleven year old daughter was also okay and had what she needed to get through the many crises we faced these past 2 years.

You never complained, you were just there. Right where I needed you, right when I needed you. You never asked for anything in return.

THAT is the definition of a true friend. Helping and caring for someone and being there without any expectations or desire for a reward or returned favor. That is the definition of you.

You are selfless. You are a wonderful person. You are just what I needed, but never thought I’d find again due to my maladies.

I am very lucky that I have a great husband who helps me with everything. But it is also nice to have some good friends. Friends like you. To laugh with, to spend time with, to grow with, to become better people with.

I had almost given up hope that I would find good friends in my new home state. After my many ailments, I thought it would be impossible.

But there you were, walking slowly but surely by my side. Maybe you saw a glimmer in my eye of what I once was- active, funny and spontaneous. Maybe you got brief hints of what my personality truly is, when free from the constraints of pain and sickness.

In a world where many people are focused upon material things and influential people, you choose not to be. You can see past all of that, and get right to the heart of the matter. You were able to see what was in my heart.

I can’t begin to tell you how much you mean to me, and to my family. I can’t begin to thank you enough for how you have helped me, and for how you have accepted me and all of my limitations.

Having you around has brought some newfound joy to my life. Having you around has helped me recover. Having you around has helped me smile again.

A lot of people in their forties have to deal with at least one chronic illness. They are lucky if they have good friends around to help them adjust and get through it. But, making new friends when you have more than one debilitating condition is very difficult. It can be a very lonely time. Online support groups can be very helpful, but nothing takes the place of a nearby friend. One who is there to listen, commiserate with and to give you a hug when you need it the most.

Thank you for being my friend. I know that it can be hard sometimes because of all I am dealing with, but hopefully better health and good times are just around the corner. I look forward to sharing those times with you.

And as I struggle to fall asleep tonight, I will have a smile on my face because I know that kind people like you exist in this world.

You are just what the doctor ordered.

Poetologie ❤

 

 

 

 

 

 

 

I Am Not A Great Mom Right Now

As I sit here writing this, my two children are asleep next to me on our giant couch. They barely ever make it to their own beds in their messy rooms, in our messy little house. We are currently living a messy life, and I am not a great mom right now.

It has taken me awhile to admit this. I dreamed of being a perfect mom, with the sweetness of Caroline Ingalls, the brilliance of Claire Huxtable, and the cooking skills of Martha Stewart. But truth be told, I’m becoming more and more like a chronically ill Roseanne.

I always thought I’d be an awesome mom, and I was doing okay during the first few years of my daughter’s life until I was struck hard by illness and other circumstances. I had to suffer through a bad car accident and bruised ribs, five miscarriages, gall bladder surgery, Interstitial Cystitis, Endometriosis, severe PMDD, Fibromyalgia, frequent pneumonia due to asthma, Chronic Lyme Disease, multiple bilateral life-threatening blood clots on my lungs, panic attacks and anxiety.

I am so fortunate to have survived all of these things, but I can feel the dream of being an amazing mom slowly fading away. The stress of being in pain and chronically ill has taken its toll.

Like tiny grains of sand sliding down an hourglass, I am very aware of time slipping away. I realize that I can’t reverse the hourglass, I can only catch some grains of sand before it’s too late.

I can’t bring back the things my children have missed out on, I can only provide them with some new things to look forward to.

I may not be able to show them how to keep a perfect house, but I can show them how to be good people.

I may not be able to show them how to run a marathon, but I can show them how to leave beautiful footprints in the sand.

My family is everything to me. Though I am disappointed that I am not able to be a great mom right now, I will never stop trying to be one.

I will be the best mom that I can be at this moment, and share the best parts of me when I am able to.

When I glide around the ice skating rink with my daughter, I hope she remembers the glow in my eyes as I looked at her. My heart melts when she is near.

When I go bowling with my son, I hope he remembers how proud of him I was after he knocked down a few pins. How proud I will always be.

I hope they remember all of the good times we shared, and all of the magical memories we created like when we visited Disney World. Our trip there was the greatest trip of my life, and I will cherish it forever.

I hope they learn a valuable lesson from me about how when life drags you down, you must keep going and be the best that you can be.

I realize now that there is no such thing as a perfect mom. We all experience the ebb and flow of life and of parenthood. We must accept the fact that there are times that we will not be terrific moms. We must learn to accept life’s quirks, perks and failures. They will help shape who we are. They will make us stronger.

I remember holding both of my children for the first time. Those brief moments were the most powerful of my life. It is when I learned what true love was, it is when I became a mom. It is when I made a promise to my sweet little babes that I would love, protect and care for them for as long as I was alive.

I may not be a great mom right now, but I hope that when my children look back on their childhood, they will see that I kept my promise, and that I loved them with all of my heart.

And hopefully they will remember that love for the rest of their lives.

 

 

 

 

 

Love and Scrabble: My Struggle with Chronic Illness

As I sit here playing Scrabble with my daughter, I am thinking of all the time that I have wasted. Quality time that I could have been spending with her, my son and my husband.

Time spent fighting Lyme Disease and Pre Menstrual Dysphoric Disorder, among other chronic illnesses.

I am surrounded by lettered tiles, a smiling daughter, and much regret. The cardboard box says “when you play games, everyone wins.” I have not been winning the last three years, I have barely been in the game. But, I will fight my heart out to get back into the game. I will fight my heart out to be there for my family once again.

As I was struggling with Lyme Disease, I overlooked the damage that PMDD was doing to my body and brain. I had not taken my diagnosis seriously, and blamed all of my symptoms on Lyme Disease because Lyme Disease has many intolerable symptoms. What I did not realize was that most of the rage, imbalance and panic that I felt was caused by PMDD.

As soon as I learned that the only cure for PMDD was surgery, I signed up. I had a hysterectomy and salpingo-oophorectomy. This decision was not taken lightly, and anyone considering it has to consult with many doctors, try a few other treatments, and do an enormous amount of research. There are many risk factors and no guarantees that the patient will feel better, but I was ready to take my chances.

My lowest point was being a prisoner in my house, in my own body. Grasping onto the couch for dear life as the anxiety and panic consumed me. Seeing my kids but not being able to play with or enjoy them. Letting them down constantly. Not wanting to be stuck in that prison anymore. Oh how I love my family, that’s why I kept going. That’s why I had surgery as soon as I could. That feeling of doom is gone, the towering prison walls are gone. Only anxiety remains. I will overcome that too.

I feel more hopeful now. The board is full of endless possibilities. Words float around like jubilation, contentment, and survival. Glorious text that I gleefully place on our Scrabble board, glad that it supplants words like despair, indignation and trepidation.

My daughter’s eyes sparkle as she looks at me. Oh how I have missed that look. She is pleased to be able to spend time with her Mama again. All these years she has needed me, I was unable to truly be there for her. She never gave up hope though. She never stopped loving me.

She laughs as she spells the word bunny. Her many freckles frame her beautiful face. I will notice these freckles more now, I will try to make up for lost time.

So many thoughts enter my mind as I sit in our kitchen. What words will I now put on the table? I will choose them more carefully. I will teach my children that words matter. That they are a reflection of who we are. That they can hurt, help or heal.

I will work hard to gain my strength back, to use my words to help bring my family closer, to help others who may need to hear them.

I have a long way to go, but I’m glad that I’m going in the right direction. The Scrabble board is in use again. My mind and body are regenerating. The words will keep flowing.

My life continues. The love continues….

Kathy ❤

Poetolgie

 

 

 

A Letter to My Children on Mother’s Day

I will always treasure every moment
I spent with you dear child
you are my baby and will always be
through many moonlight miles

I hope your days are always filled
with more happiness than you can accrue
and when I am no longer here
the moonbeams will send my love to you

Dear Children,

While you were in my belly I thought a lot about being a perfect mother. I dreamed of you under a starry sky and a bright full moon. I felt like I had been waiting my whole life for you, and I wanted to make sure you were happy. I pictured being Martha Stewart in the kitchen, having a house worthy of Better Homes & Garden magazine, and endless days of laughter, fireflies and fun.

When you arrived I knew the true meaning of love, and wanted to fulfill these goals more than anything.

What I didn’t know then was that I would not accomplish many of these objectives due to Chronic Illness, Lyme Disease and Anxiety. These dreams slowly drifted away as the pain increased, my brain got more foggy, and my strength diminished.

Though I knew that there was no such thing as a perfect mother, I wanted to be as close to perfection as possible. I set the bar very high, and I could never come close to that goal.

You are my little moonbeams, and I prayed to the moon for your forgiveness.

I read you books when I could, played games when I could, and took you to the park when I was able. I walked many moonlight miles with you, I would walk anywhere with you. I cooked you nice meals, and baked awesome allergy friendly treats as often as possible. I watched the sprinkles fall from your fingers, just like I watched the rapid passage of time.

I thought that despite my health issues, life sure is very sweet.

I would destroy the bar I set, and set a new one. This one would focus more on love than longevity, and more on feelings than frequency.

I would learn to enjoy whatever time we had together, and make memories that would last us a lifetime.

I knew that no matter what, I had already accomplished my greatest goal, bringing two incredible children into the world.

You are incredible.

Never forget that.

You show compassion when others are in pain, you hold your little umbrellas up to me to shelter me from the rain. You sit at the buddy bench with those who need a friend, you live your lives with joy and kindness that certainly does transcend. You help plant our garden with seeds of hope, you help me get by, you help me cope. You are as peaceful as little doves, have taught me the meaning of unconditional love. You are more special to me than words can say, and I will love you til’ my dying day.

I am so blessed to have you in my life.

I am sorry for my shortcomings, or for anything you have missed due to my illnesses and anxiety.

But I am not sorry that you failed to miss what the meaning of life is.

Being kind and true to yourself. Being able to put others in need before yourself from time to time. Spending as much time as possible with those you love. Never taking them for granted, never forgetting to tell them how much you care.  Love yourself, others and the environment. Never stop growing your mind, your heart, your soul.

I am so proud of you.

I am so happy that I get to spend Mother’s Day with you.

There is no one else I’d rather be with. There is no one else like you.

Thank you for all of the joy you have given me, and continue to bring to my life. I hope all that joy comes back to you two-fold.

I hope you will always remember what I have taught you.

Always live your life to the fullest.

Always remember how much I love you.

Always remember that that light that shines within you is greater than the light of any moon.

 

 

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Today I’ll Take Care of You: A Letter to My Family

It is a quiet Saturday morning in April. Rain falls softly outside, and the streets are covered with cherry blossom petals. Though all of you are sick with a virus, it is a good day.

Today I am able to take care of you for a change. Today I feel okay. I have the strength to make you some eggs, toast and tea. I’ll bring them to you in bed, and plant a gentle kiss on your forehead.

Today I will make some of my homemade tomato sauce that you love, and its magnificent aroma will fill the air. I will bake those nut-free vanilla cupcakes that you’ve been asking me to make for months. We will play Scrabble for hours since my brain is less foggy. We will cozy up on the couch and watch a great family movie.

I will be the mom/wife that I want to be every single day. The mom/wife that is not too sick to care for you, to cook for you, to be present for you, to explore the world with you. I will cherish this day, and pray for many more like it.

My many chronic conditions include Asthma, Lyme Disease, Fibromyalgia, Interstitial Cystitis, Endometriosis, Anxiety and Pre Menstrual Dysmorphic Disorder.

Any one of these conditions are enough to make life difficult to manage and cope with, but together they are often debilitating.

You see me wince with pain, so you help dry my tears. You see me tired and hungry so you bring me food. You see me unable to do chores so you help do them for me. You see me suffer, so you bring me my medicine.

What you don’t realize is that you provide the best medicine in the world. The medicine I need the most.

Love.

You provide it in daily doses of hugs, teaspoons of tenderness, and soothing scripts.

There is no better prescription for happiness. You make the tough days tolerable, the painful days palatable, and the crazy days comforting.

You are there for it all, and help me get through the unavoidable rain. You rarely complain, you just want to help me feel better.

I appreciate every single thing you do for me. I appreciate all of the sacrifices you make. I appreciate your constant companionship.

It is nice to not have to feel so alone in this long journey of chronic illness. In this long journey of life.

It is nice to have all of you by my side. My sweet family. I love you more than words can say.

Today I’ll take care of you.

Today I promise to keep fighting to get better so that we will have many more days together in sickness and in health.

Today it is my turn to provide you with some comfort, warmth and unconditional love.

Rest your weary heads.

Mommy is here.

And I will be here until the last cherry blossom petals wash away.

 

 

 

 

 

A Letter To My Kind Hair Stylist Who Eased My Anxiety

To My Kind Hair Stylist:

When I entered the salon you worked at I was filled with anxiety for no reason. It’s just something I deal with daily. My generalized anxiety has become much worse since I developed Lyme Disease. Regular daily chores and trips to the grocery store/hair salon/mall/restaurants fill me with anxiety. I wish I didn’t have to feel this way all of the time, but for now I do. I’m working hard to overcome it, but that could take many years.

And so I made myself walk into your salon. I desperately needed a nice haircut, and I took a deep calming breath and hoped for the best. The salon was beautiful, and had a nice relaxing atmosphere. The staff were all really nice and brought you out to meet me.

There was something about you that immediately put me at ease, and that is no small feat. You had a big smile on your face and a nice, tranquil demeanor.

You brought me to your chair and asked me a few questions about how I wanted my hair cut. I answered your questions quickly as I was still nervous. Then you proceeded to wash my hair. The scalp massage really helped me to relax. I felt okay as I walked back to your chair.

I had to immediately bring up a few health issues, as my Lyme Disease makes me more sensitive to chemicals, and I have to make sure there are no nut or shellfish containing products used due to me and my son’s food allergies.

You did not roll your eyes at all I told you. You kindly and sincerely answered all of my questions, and even checked and rechecked the product labels to make sure they were safe.

Even though you were very young, you had a certain patience and understanding about you that usually comes with age.

Whatever topic I brought up, you offered words of wisdom well beyond your years. You were sympathetic, perceptive, and very knowledgeable.

I was so grateful to be able to loosen up and be distracted enough to actually enjoy my haircut for the first time in years. You have no idea how much that means to me.

After talking to you for awhile you brought up the fact that you had recently donated your kidney to a boy you had been dating for only a year. Then it all made sense.

You aren’t just a thoughtful young woman. You aren’t just a patient woman. You are an Angel on Earth.

You had actually saved someone’s life, and I was grateful to be in your peaceful presence.

You gave off an air of acknowledgement, because you’ve already been through so much.

You were able to put me at ease, because you understood struggle.

You were able to show much kindness, because you know exactly what it means to walk a tough road.

You were also able to give me the best haircut I’ve had in years, even though you are just beginning your career.

When my haircut was through, you gave me a big hug. Not a forced one, a real genuine hug from your heart. That had never happened before in my 40 plus years of getting haircuts.

It was very sweet, and special, just like you are.

I believe deeply in thanking people who have shown me or my family kindness. I believe in thanking people who make my day, or go out of their way to help others.

Thank you for putting me at ease and making an ordinary trip to the salon an extraordinary one.

You are very good at your job and I wish you all the success in the world.

I also wish good health to you and your boyfriend. I hope the special bond that exists between the two of you lasts forever.

I will be back for more haircuts and will refer my friends and family too.

I have never thought of writing a letter/blog to thank a hair stylist before. That’s because I never met one like you.

I am altering the words of Sir Elton John to say:

My gift is my blog, and this one’s for you….

 

 

 

 

The Race

I have moved slowly my whole life. I have been called a turtle and an Ent among many other things. I have never felt the need to rush, and my lifelong anxiety prevents me from acting quickly even when I try.

I was always one of the slowest runners at school, and the slowest walker on the crowded streets of New York City where I grew up. I cook slowly, I eat slowly, and I get ready slowly. I think slowly, and right now I am typing this blog slowly.

It has always taken me longer than others to get most things done. I was glad when I met my husband that this didn’t seem to bother him. My turtle pace was just fine with him.

When we had kids it was hard for me to keep up with hungry babies, fast moving toddlers, and now busy young children. I adapted and kept up the best I could.

Then I was bit by a tiny tick and developed Lyme Disease. Added on to my already full plate of Anxiety, Interstitial Cystitis, Fibromyalgia, Pre-Menstrual Dysmorphic Disorder, Endometriosis, Vulvodynia, and slow-moving turtle syndrome, I felt completely overwhelmed. It felt like I was caught up in a never ending cycle of Chronic Illness.

How would I get anything done now? How would I get through this?

Slowly. One day at a time.

Lyme Disease completely took over my body and brain for awhile. I have improved about fifty percent over the last 3 years thanks to my doctors and antibiotics, but my brain is still affected, and it is difficult to remember certain things.

There is no cure for Chronic Lyme Disease, and so I continue to fight, and move even more slowly. The waves of Lyme haze run through my brain, and I still struggle to be set free.

There were many days when the guilt of not being enough, and not doing enough for my family was crushing. There were many days when I didn’t have the strength to cook or even take a shower, let alone play with my children.

This guilt followed me around like a shadow on the ground, the writing on the wall. Until I decided to stomp all over it, and to write a new story.

In this story, it is okay to be a sick, extremely slow-moving turtle. I still have worth, I still am able to give and receive love. I strengthened my shell, I developed new goals. I have a new outlook on life.

I decided to feel beautiful inside and out, even though I looked disheveled on most days. I decided to tell my family that I love them at least twice a day. I decided that it was okay to plan one fun thing a week for my kids to look forward to, for me to look forward to. I decided to try hard to brighten other people’s days, or to help others more when I am able to, through my writing and other avenues. I decided that was enough, I was enough.

Though I can’t do as much as I used to since my turtle power is low, I have learned to cherish all that I can do.

All of us move at different speeds. All of us are facing many difficult trials and tribulations. All of us are part of the human race.

We don’t have to win it, we just have to consciously and compassionately be in it.

 

 

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 ❤

Poetologie

Nuts About My Son

 

quicksand meme