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

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

 

 

 

Fifteen Things to Say to a Woman with PMDD

I was diagnosed with Pre-Menstrual Dysphoric Disorder (PMDD) five years ago. It was right after the birth of my son. I felt off, not like myself, and very irritable. It was hard for me to concentrate and take care of my new baby, and my daughter. I was constantly trying to subdue my inner Joan Crawford. No more plastic baby hangers!

I went to my gynecologist and told him how I was feeling. He prescribed birth control pills and said I had PMDD. I said “yeah, you know me.”

I took the pills, and felt better within days. I have been taking them for 5 years now, but recently they have stopped working and my PMDD has become severe and debilitating. It is the worst thing I have ever been through, and I watched the movie version of The Phantom of The Opera.

I don’t think I would get through it without a little help from my husband, my doctors and of course my friends. (Beatles ear-worm starts NOW!)

I had never heard of PMDD before, and if I tell anyone about it they have no idea what it is either.

Johns Hopkins Medicine describes it as follows:

“an abnormal reaction to normal hormone changes that occur with each menstrual cycle. The hormone changes can cause a serotonin deficiency. Serotonin is a substance found naturally in the brain and intestines that narrows blood vessels and can affect mood and cause physical symptoms.”

I describe it as follows:

“When Moses begins the cycle of parting my Red Sea, I get cray-cray.”

I can personally tell you how serious and difficult PMDD is. It is like entering the Amityville Horrors door to the pit of Hell- you want to get out, but you are stuck in a suburban type home on Long Island full of tears, fears, and Tears for Fears music.

According to Harvard Health about 15% of PMDD sufferers attempt suicide.

I can personally tell you I now know why they do.

If you know anyone with PMDD, or anyone who you think may be suffering, here is a list of 15 things you can say to help:

  1. I believe you have a real illness called PMDD, and that it is not your fault. Tell me more about it. I will sit with you on the bench of life just like Forrest Gump. I know that life is not always a box of chocolates.
  2. I still love you and will support you for as long as it takes to get the proper treatment. Even if it means decades until you reach menopause. Golden girls here we come!
  3. If you need some space I will give it to you, even if you tell me to f*ck off and go to another galaxy. Just let me know when you would like me to visit/call, I will always want you to live long and prosper.
  4. If you need a friend, I will always be here. I’m not going anywhere, not even when you become Bitchzilla, or your head spins around like Regan MacNeil in The Exorcist.
  5. If you need a ride to the doctor’s office, I will take you in my bitchin’ Camaro. There may even be donuts on my lawn.
  6. If you need someone to pick up your prescribed medication at the pharmacy, just call and say “Hello, it’s Xanax I’m looking for.”
  7. If you need help doing some research or finding a proper specialist, I will help you, I know how overwhelmed you are. The FBI’s got nothin’ on me.
  8. If you have to stay home often, I’ll join you and not feel like I’m missing out on anything, because you are what matters to me and that’s what friends/loved ones do. They show up. They’ll do a Game of Thrones or Godzilla marathon, watch Terms of Endearment, or Star Wars: A New Hope for the 100th time. Whatever suits your mood.
  9. If you have a panic attack, I will hold your hand and comfort you and help you breathe until it’s over. We will find balance together, and Rock the Chakra or the Casbah.
  10. I don’t like to see you suffer and I will do anything I can to help you ease the pain, even sit near you when your dogs are barkin’ like Del Griffith from Planes, Trains and Automobiles.
  11. Just let me know what you need, and I will do my best to help you. You don’t have to become a drifter and walk alone, no matter what Whitesnake says.
  12. You can always count on me. I am not going anywhere. Like Bon Jovi says “I’ll be there for you.” We will live on a prayer…together.
  13. I will not judge you and will always love you no matter what. (Unless you start listening to Justin Bieber or sport a mullet, then the deal’s off.)
  14. I’m so proud of you for your strength and courage. You are doing a great job trying to fight this. I know you will eventually succeed. (Insert Rocky theme song.)
  15. As Ted says, we are Thunder Buddies for life! I will help you through any storm, that’s what spouses/friends do, that’s what I will always do!

This blog marks the first time I have been able to find humor in my current situation. This illness is not humorous though. If you need help please go see your doctor right away. If you are experiencing thoughts of suicide please call 911 or The National Suicide Prevention Lifeline at 1-800-273-TALK.

A helpful closed Facebook support group is PMDD Moms:  https://www.facebook.com/groups/pmddmoms/

I wish all of you that suffer strength, success, peace and much love.

Hang in there, you will eventually be okay, don’t give up!

 

 

Caught in the Jaws of PMDD

Two weeks ago I had to run out of my doctor’s office. I was in the waiting room and was hit by a giant wave of extreme panic, the likes of which I had never felt before. As an anxiety sufferer, I thought I knew what panic was, but boy was I wrong. I couldn’t even say goodbye to my husband and 5 yr. old son. I just kept running. I was completely overwhelmed and out of control. I did not know what was happening to me, I just wanted it to stop. Please let it stop. I ran to our car and my husband and child joined me shortly after. I could barely get out the words, “take me home now!”

I am extremely fortunate that my husband is a psychiatric nurse. He was able to recognize my symptoms of panic, and gave me some of my Xanax as soon as we got home. He held my hand and comforted me the whole time. After five or ten minutes I started gaining some control. The seasick type feeling I was experiencing subsided. I could let go. I was back on the shores of sanity. For now.

I was so lucky to be in the presence of someone with extensive psychiatric knowledge. I was so lucky to be in the presence of a man who was not scared away by this event. He never left my side. He only held me and listened to what I had to say with no judgement. He listened as we tried to figure out what was going on.

I have been suffering from Chronic Lyme Disease for almost three years now, and six other chronic diseases for almost twenty. It is often hard for me to figure out what is wrong with me since I frequently have so many symptoms. It is a constant tidal wave of pain and anguish.

I usually blame my Chronic Lyme Disease for my discomfort, since it is my worst illness which often causes mayhem.

But I have never experienced severe panic attacks before. This was new. This felt different.

I explained to my husband that this felt hormonal and unlike my Lyme Disease symptoms or Herxheimer Reactions. He agreed that it could be my PMDD worsening.

I was diagnosed with Pre Menstrual Dyphoric Disorder  (PMDD) five years ago, right after the birth of my son. I was put on birth control pills, and they helped to keep it at bay for over three years, but are no longer working.

I never suffered from PMS, and had no idea that something like PMDD even existed, or was so awful and debilitating. According to the MGH Center for Women’s Mental Health, it is a severe form of PMS that affects about 3-8% of women in their reproductive years. It can happen to anyone, but their are a few risk factors including age, family history, and prior anxiety or mood disorders. The symptoms can include anxiety, irritability, panic, lack of control, confusion, trouble sleeping, headache, cramping, nausea, hot flashes, dizziness, heart palpitations, sadness, feeling overwhelmed and social isolation.

Johns Hopkins Medicine describes PMDD as follows:

“an abnormal reaction to normal hormone changes that occur with each menstrual cycle. The hormone changes can cause a serotonin deficiency. Serotonin is a substance found naturally in the brain and intestines that narrows blood vessels and can affect mood and cause physical symptoms.”

I am not myself right now, and I am currently debilitated from it. I was already low-functioning due to my other issues, but now I can barely perform any daily tasks. My family is suffering, and I can’t feel much joy or even leave the house much due to my extreme fear and ongoing symptoms.

I’m caught in the Jaws of PMDD and I struggle to be set free.

I hope and pray that the treatments my doctors prescribed will help very quickly. Some of the suggested treatments are Prozac, different birth control pills such as Yaz, light therapy, cognitive behavioral therapy, lifestyle and diet changes, and some herbal remedies. Due to the severity of my PMDD I must try many of these options. I will start Prozac in a few days. I will pray for it to work quickly. If it does not, I may have to try a different birth control pill or pursue other more drastic measures such as Oophorectomy/Hysterectomy .

This is very hard for me to deal with. The feelings of fear, loneliness and despair are all consuming. I want to plan fun trips with my family. I want my kids to enjoy their summer vacation. I want to be a good loving mom again. But until my PMDD is under control, many things are on hold. My life is on hold.

I must bear this burden, I have no choice. I will pray for an end to the panic attacks for they are the worst part of this. They are almost unbearable for me because they are terrifying and temporarily impair me. They make it impossible for me to be fully present and able to handle any emergencies that may arise, such as my son suffering an anaphylactic event due to his food allergies.

I must get this under control. I know that I will eventually, I just don’t know how long it will take.

I had to take some Xanax just to be able to write this story because just thinking about it induces panic. That has never happened to me before. Writing is my escape. It is my joy, my calling and my blessing. It is currently being taken away from me by the great leviathian called Pre-Menstrual Dysphoric Disorder.

Like a chum filled ocean my thoughts are cloudy, and I want to escape before the next shark takes the bait. I am uncharacteristically writing this fast so that I can try to out swim the panic. It creeps up on me slowly, it entraps me, it encircles me.

Like a shark looking for its next meal, it sees me struggling on the water. My legs kicking swiftly just to try to keep afloat. My hands swirling around, I must keep treading. I cannot go under.

But when it has me in its grasp, I struggle to breathe, I struggle to speak, I struggle to swallow. I want to run. I want to escape. I want to be anywhere else. I want to be anyone else.

I want to be free.

But my heart keeps pounding, my head keeps aching, my mind keeps racing.

I would give anything to have a simple bad hair day, or a bad hat Harry day, but this is simply intolerable.

I need Chief Brody to destroy the monster inside of me.

I need to become fearless like Quint to be able to keep fighting, but I’m trying not to be swallowed whole by this and suffer his ultimate fate. Like he said in Jaws “You know that was the time I was most frightened. Waitin’ for my turn.”

I’m trying to wait for my turn to be healed. And I am very frightened.

I may need a bigger boat…..full of hope….