When We Are Dying We Will Embrace The Love Of Those Around Us

It’s a brisk September morning. The chill in the air is minimal, but after a 90 degree day it feels freezing. A few yellow leaves drop to the ground as I walk with my daughter. The kids are back in school so there is much activity. Many dogs accompany their families on the walk, and we see many bike riders pass on the Washington and Old Dominion Trail outside of DC.

It’s mornings like these that I treasure. Walking my children to school, talking and laughing along the way, saying hello to passing friends and neighbors. Life is fleeting, my children are growing so fast, time is so precious.

I come home to a quiet house, the silence is both welcoming and unsettling. I pet our bunny Peanut and hamster Zaychu to remind myself that I am not all alone.

I think for a few moments about death because September 25th will be the one year anniversary of the day I almost died from multiple bilateral pulmonary embolisms. I am so grateful to be alive, but am still haunted by that day. I am still trying to recover both physically and mentally.

I look at the devastation that is going on in Houston, Florida, the Virgin Islands and Puerto Rico, and once again I am reminded of my blessings. I sip my chamomile tea as thousands of people are struggling to find drink, food, shelter and clothing.

We never know when tragedy will strike. We never know when we will require assistance. We never know when our last day will come.

That is something that we all have in common. That is what makes us human.

I remember the tough year I just had, and see the tough times many people in the world are facing, and I feel saddened.

Then I look up from my keyboard and witness the humanity, courage and love that always follow each and every tragedy. Each and every personal loss.

It is like a tide that ebbs and flows throughout our lives. Sometimes we’re up. Sometimes we’re down. But, hopefully we will have loving friends, family and community members around us as we tread carefully through this life.

There are constant reminders of the fragility of life. There are constant reminders of the heroes and helpers who help us pick up the pieces.

They are there without a moment’s notice. They are not there to seek accolades. They are just there to help.

If we all try to be like them, then our world will be a much better place.

When we are dying we will embrace the love of those around us. When we are dying we will think about whether or not we made a difference in other people’s lives. When we are dying we will think could we have done more? Could we have loved more?

The answer is always yes.

We can always do more to make ourselves and others happy. We can always do more to make others smile. We can always do more to help our neighbors who are without food, shelter or healthcare. We can always do more by standing up for those who cannot stand up for themselves.

One year ago I almost died.

This anniversary means so much to me. I will raise a glass to old friends and new. I will hug my family and celebrate that I’m still here. I will try my best to appreciate each new day that I’m given. I will try my best to help others however and whenever I can.

I will think about what will happen when I die a little more often now after surviving my blood clots.

When I die, I know it will be with a clear conscience and a full heart. But that time is not now.

Now, it’s time to live.

 

 

 

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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 ❤

 

 

 

 

 

 

 

The Incredible Fall: My story of Pulmonary Embolism.

I love the Fall.

It is my favorite season, one I look forward to all year long. I couldn’t wait for it this year especially. I would be fully recovered from my surgery, and ready to make wonderful memories with my family. Apple picking, pumpkin picking, Fall Festivals, long walks, birthdays and Halloween fun.

I had a rough summer, facing the turmoil of severe PMDD, and a major surgery. I couldn’t wait to be healed and get a long awaited break.

And then it happened.

I was walking my daughter to her school which is very close to our house, when I could barely breathe, and the left side of my chest hurt. My chest felt a heaviness I’ve never felt before, and my heart was beating rapidly. I felt lightheaded and scared but hid it from my daughter while I whispered goodbye.

Little did I know at the time that it could have been my last goodbye to her. My sweet precious girl.

One third of people who have not been diagnosed or treated for pulmonary embolism will die. Wow. That statistic just hit me like a ton of bricks. I have to take a moment to recover.

I walked home with my five year old son very slowly. A walk which usually takes five minutes took about twenty. I called my husband and said something was wrong and that I needed to go to the emergency room right after he dropped off our son at school. My son who is now six years old. My son who still needs me to teach him so many new things such as how to live a full, safe life with severe food allergies. My precious boy who still calls me Mama, and falls asleep by my side each night before bed.

Though I was very nervous and having trouble breathing, I really thought I had pneumonia and pleurisy again. As someone with asthma and many chronic illnesses, I get sick very easily.

I was given a bed and an IV very quickly. Soon after they gave me a full blood panel.

I was completely shocked and taken off guard when the ER doctor told me that he had good news and bad news.

My gaze fell to the floor as I tried to hold back tears.

The way that he said it scared the hell out of me. It didn’t seem like the usual I’m about to tell you that you have pneumonia look.

Bad news? I immediately thought of cancer, and of some other horrible possibilities.

The doctor told me that my D-dimer test was high and that they would have to admit me to the hospital. I thought what the hell is a D-dimer test? I quickly found out that a D-dimer test is a test which measures blood clot risk. I had never heard of it before but it is a very valuable diagnostic tool, one which started the doctors on the path to saving my life.

The good news was that I would get my own room at the hospital very quickly and be able to get a CT scan to see if there were indeed blood clots somewhere. I was immediately given the blood thinner Lovenox through my IV. Blood thinners work to prevent existing clots from growing, and toward preventing new ones from forming. I was given an echo-cardiogram and Doppler Ultrasound of my legs. Thankfully, those tests were fine.

I had never had a blood clot before, but had a few of the risk factors including supplemental estrogen from birth control pills, recent surgery and bed rest. According to the Mayo Clinic, some other risk factors may include pregnancy, cancer, heart disease, smoking, long trips, and being overweight (especially in women who smoke or have high blood pressure.)

I knew there were some risk factors from taking birth control pills, especially the Yaz pills that I was taking for my PMDD. I also knew that my recent hysterectomy/oopherectomy held such risks. I took those risks willingly, never thinking that I, a woman in my 40’s who had never had a blood clot, would actually get one.

Well, welcome to my October surprise!

I was in the hospital for three days and the entire staff was warm, friendly and very knowledgeable. I hated being there for so long away from my family, and was very frightened. The nurses, assistants, nutritionists and doctors all helped me to feel like I wasn’t alone, in between my family visits. I joked with one of the staff and called her Nurse Ratched, every time she stuck a needle into my belly. My belly which is extremely sore and bruised from twice daily injections. My belly which once held my sweet babies is now a giant pin cushion. Brief pause as I imagine Hellraisers face imprinted on my belly. Ok, back to my belly, which may be in pain, but will be the place through which the medicine is placed, to help me live again.

I took a CT scan with contrast which diagnosed me with multiple bilateral pulmonary emboli. I will have to be on blood thinners for at least six months, and take many blood tests and scans. There are other blood thinners our there in pill form, but I reacted badly to them.

The recovery differs for each patient from a few weeks to many months or years. For me, it is taking a long time. I had just recovered from major surgery when I got my diagnosis. I was out of shape, and am now extra anxious due to my new medical condition. It has been hard to breathe, especially due to my asthma, and hard to walk far distances. I had some anxiety before, but now it is at an all time high. It is hard to get things done or leave the house on many days, but I must especially to exercise to aid my recovery, and prevent more blood clots from forming. I am currently on daily medication until the anxiety improves. I am hoping that it will soon, and that when I am off of blood-thinners in March that things will get as back to normal as they can.

I face a long, scary, anxiety provoking six months, but with the help of my family, friends and many doctors, I will get through this. I will keep taking baby steps, and pray I will not have more roadblocks on the way to full recovery. I will take it day by day. I will look at the faces of my children and my husband, and thank God I am still here. I will appreciate their beautiful faces even more now. I will try to show them how much I love them until my last breath. I will work harder to make a difference because this scare has taught me that my time here is limited.

Please learn the symptoms of pulmonary embolism and talk to friends and family about this important and dangerous condition. It can affect you no matter your sex, and risk factors increase with age. Discuss the risks of using birth control pills with your daughters, especially the ones containing drospirenone which can dramatically increase the risk of fatal blood clots.

I did not know the symptoms of pulmonary embolism weeks ago. But, I did trust my instincts that something was very wrong. Going to the ER that day saved my life and now though my activity is limited, I can enjoy my favorite season once again.

I love the Fall.

Now more than ever…

 

Kathy ❤

Poetologie

 

 

 

 

 

 

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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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.