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 ❤





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:

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….