The Phone Call

On September 25, 2016 I was diagnosed with Multiple Bilateral Pulmonary Emboli. It was one of the scariest days of my life. I have been suffering from many chronic illnesses for twenty years now, but I was never given a life-threatening diagnosis before. I have faced many rough days, and have spent many nights awake with fear, but this hit me the hardest. I didn’t know how I was going to deal with this information.

I usually work through difficult situations by writing blogs and poetry. This was new territory for me though. I never had to write about a life-threatening situation that I was in the middle of. This was not fiction, or a distant memory, this was happening now, and writing about it would make it all too real. I had to try to distance myself from it in order to survive. I had to try to forget that there are currently blood clots all over my lungs which could kill me in an instant. Which could take me away from my family, this beautiful Earth, and all that I love. This time was different. I tried to distract myself, I tried to keep busy, I tried to rest, I fought to get through the day.

I am sorry to all of you who are currently facing life-threatening diseases or illnesses. I now know how you feel in my own way in regards to what I am facing. I can’t know exactly how you feel or what you are going through, but I wish you hope, strength and lots of love.

I was told that I would have to take blood thinners for up to six months. I am extremely sensitive to medications and was not able to tolerate the pill forms of Eliquis or Coumadin. I was able to tolerate Lovenox in the hospital so my hematologist agreed to let me take it though it wasn’t the normal protocol.

My husband who is a registered nurse injected me twice daily with this life saving medication. It prevents the existing clots from getting bigger, and it prevents new clots from being formed. The shots in the stomach are painful, and have left my entire abdomen bruised and tender. I bruise and bleed very easily now and have to avoid doing anything that could result in bad injury, especially to the head. Some people do fine on the blood thinners, but since I’m so sensitive it has been very difficult for me to stay on them. I have asthma, Chronic Lyme Disease and anxiety and this medication has made all of these conditions worse. I feel strange, dizzy, nauseous and not like myself. My life has been put on hold these past four and a half months and I haven’t been able to enjoy much. I’ve barely gone anywhere besides to take my children to school.

I have not been able to write much due to my anxiety, and the fact that I feel like I can’t put into words what I’m going through until it’s over. I’m so paralyzed with fear, that I can’t think clearly. I have many trapped words in my head waiting to be out of their prison. I look forward to the day when they flow freely, dancing around the page, unencumbered, raw and beautiful.

Though I’m so grateful and lucky to be alive, I can’t wait to truly live again.

And that brings me to the phone call.

Yesterday, I had a CT  Lung Angiogram with contrast. This test will allow the radiologist to see if all of my blood clots are gone. This test will let me know whether or not I can have my life back. This test will let me know if I can breathe again, with less anxiety, and more joy. With more happiness and fun times for my family, a family I have woefully neglected for a very long time. I’ve been sad, scared and angry for too long. I pray I get the chance to make it up to them.

My hematologist is supposed to be calling me today with the results. I jump each time the phone rings. My heart starts beating very rapidly like the Tell Tale Heart. Will I be free, or left with its maddening heartbeat?

And so I wait, and in between taking and picking up my children from school, I will hope, I will pray, I will try to believe that I deserve some good news.

Let’s hope it comes soon.

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

 

 

 

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.