Month: July 2019

“People who don’t see you every day have a hard time understanding how on some days–good days–you can run three miles, but can barely walk across the parking lot on other days,’ [my mom] said quietly.” ~ Jennifer Starzec

Yes, my illness is invisible. I have days that my illness takes over and I become a hermit. I don’t leave my house on my worst days. This is one reason why people don’t see me when I’m sick and why people may not believe that I have a chronic disease. On good days, I don’t leave my house without full makeup on, and my hair done. I have a huge collection of makeup. I watch so many makeup tutorials that I could be a professional makeup artist! My hair has to be perfect. I so want to go out and feel like everyone else; normal.

            While I’m out, there’s always the chance that my pain will return. There’s a chance that I’ll start getting a headache that could turn into a migraine. Unfortunately, constantly trying to appear normal is exhausting. So there is a chance that my fatigue could hit me like a ton of bricks and I will feel like I’m being dragged down by sudden extra weight. I carry medications with me wherever I go. I have even carried my heating pad.

            I will sit down, even if there aren’t any seats right where I am. It’s embarrassing to sit on the floor of the grocery store, or Walmart. But I’d rather take a minute and gather my strength than to have EMS come pick me up. I don’t really want my daughter to see that. I try to avoid doing things that I know will over extend me. Although, there are times that even while doing nothing at all I’ve begun to flare up. I have to plan around my activities and my pain.

            I don’t want to be out and have my pain return with a vengeance. I don’t want to have the pain hit me so hard that I hit the floor, that I pass out or I end up not being able to walk. It’s embarrassing to be so young and have to be wheeled out of a busy public place in a wheelchair. It’s happened though!

            I don’t want pity; I certainly don’t want to be the center of attention. The last thing I want is to be away from my “safe place” when I flare up. My “safe place” is home, with my husband and daughter. At home I have my medication, my bathtub, heating pad, access to ice packs, dark rooms, and people who don’t and won’t judge me. They understand and will help me and care for me.

            I don’t want to be out where I have to explain my disease, my symptoms, or my pain. While I know that there are a lot of “understanding” people out there, kind people, I know that not everyone will truly understand. Having to explain my pain, my fatigue, my brain fog, the excessive bloating, and my many other frustrating symptoms can be embarrassing. Please understand that while you may see me on a good day, I control what you see. You don’t see me on the worst days of my illness because I purposely hide them from you.

  A gravitational pull
 Yearning in my chest.
 An inch deep inside,
 Thoughts in my mind reach out and stretch.
 A record plays,
 The same song on repeat.
 I’m on edge,
 Fidgeting in my seat.
 On thought:
 A want…
 A need…
 A desire…
 One hit is all I need.
 A taste to calm my soul.
 It fills space and time.
 This one moment becomes mine.
 Fire and desire
 Fade into pleasure and peace.
 A high so amazing
 I pray for it never to cease.
 I see my future
 And I accept my past.
 My addiction has taught me this,
 As I fell so fast.
 It makes me smile…
 It makes me cry…
 It makes me weak…
 It makes me strong…
 I love this feeling;
 This unique high.
 I’m addicted to your drug.
 I breathe it in with a drunken sigh.
 Your love is my drug;
 I’m addicted to you.
 My mind, body and soul
 Are ecstatic with this high so new.
 I want to over-dose on your love.
 It’s strong and pure.
 My addiction craves you
 More and more.
 I’m an addict
 And my drug is you.
 I don’t need rehab,
 Just more and all of you.

~Written in 2011; This is about how early on in a relationship, infatuation is very much like addiction.

  It’s the way you laugh…
 The way you smile…
 The way you care;
 You go the extra mile.
 It’s the wrinkles around your eyes…
 The color of your gaze…
 The way you take my breath;
 It sends me into a craze.
 It’s the way you open doors…
 The way you make me smile…
 The way you make me laugh;
 I’ll go the extra mile.
 It’s the way I’m speechless…
 The way I’m breathless…
 You drive me wild;
 The way you make me smile.
 All I have to do is think of you.
 It’s the way
 You are who you are.
 The way you make me smile.
 Its’s the simple things…
 It’s in the why you say my name…
 The way you light up when you talk about your game.
 It’s the way my heart beats
 When our eyes meet.
 It’s the way I look at my phone,
 Waiting for the text tone.
 It’s the way you’re a gentleman…
 The way you’re genuine…
 The way you talk;
 It’s the way you’ve won my heart.
 All I have to do is think about you.
 You drive me wild…
 It’s the way you are…
 It’s the way you make me smile.

 ~ Written February of 2011 about my husband, Galen Newton. 

  The sun sets,
 The moon rises.
 Where does the day go?
 The clock ticks
 Faster, louder.
 The hours chime
 Sooner, quicker.
 Time goes by
 And things are left undone.
 No time left
 To learn.
 No time left
 To live.
 No time left
 To love.
 Maybe today ends
 To never return
 And tomorrow never comes.
 So time disappears
 Without a trace.
 No concern for those left behind,
 No pity for the abusers,
 Not a single thought.
 Just a steady never ending
 Rhythm of a reply.


 ~ Written in 2003 in a creative writing class. 

As I held a hand
 So soft, so small,
 I felt like a cloud
 Just floating through the air.
 The feeling of love
 Is an unexplainable emotion,
 And is one in a million
 Reasons I live.
 I live to watch it have
 It’s first word…
 It’s first step…
 And it’s first tooth.
 I feel like a you d child’s spinning top,
 Spinning uncontrollably.
 I have an emotion that
 No one can understand.
 But when I wake at night to hear
 It’s laugh…
 It’s cry…
 And it’s silence…
 They understand that.
 A hand so soft so small.


 ~ Written in 1997; I was in 7th grade when I wrote this for a poetry contest. Oddly enough, I won.
   

The “Why My Illness is Invisible” Series

“I often wished that more people understood the invisible side of things. Even the people, who seem to understand, didn’t really.” ~Jennifer Starzec

Life is inevitable. There is no pause button. My daughter and husband need clean clothes. They need a clean house and warm meals every day. My husband and daughter need me, my love, care, and attention. My three dogs and two cats need to be walked and fed every day. I have to get up, get dressed, every day; no matter the pain I am in, because I have things that need to be done.

            You can’t see my illness by looking at me. You can only see the symptoms and that’s only if I let you. I don’t walk around with my surgery photos for the world to see, to prove how sick I really am. Invisible illnesses are chronic ailments that impair normal activities and daily living. They are different from other disabilities such as a paraplegic, who has to use a wheelchair because they can’t use their legs to get around. You can see what their disability is. However, I have a disability that you can’t see unless you cut me open and know what you are looking for.

            The number one symptom of endometriosis is chronic pain. I have other symptoms that I will list in part 3 of this series. There is a huge stigma around chronic pain sufferers. This leads me to try to avoid letting people know I am in pain, or how much pain I am in. I’ve gotten pretty good at hiding my pain level while in public, so people around me can’t visibly tell what my pain level really is. This can lead to misunderstandings that I try to avoid because of the stereotypes and perceptions of people battling chronic pain. The stereotypes and the “stigma” of those with chronic pain is that there is an invalid judgment and labeling from friends, family, employers, and even doctors that we are weak or attention seekers. Sometimes we get labeled as lazy. Due to the current opioid crisis, we often get labeled as drug-seekers, or addicts. This is unbelievably isolating.

            I have dealt with these perceptions when it comes to my chronic pain as well as the fact that my particular disorder deals with my lady parts; menstrual cycles and infertility. That’s such a taboo subject. People become uncomfortable when you start talking about your periods, bleeding, infertility, ovulation, and the general reproductive areas.

            I understand that it is difficult for others to respond to my illness. It can be hard to understand and the facts of it and it can be uncomfortable to many people. The things I go through during flare ups become hard to explain to those who don’t know anything about endometriosis or reproductive illnesses. Certain aspects of my illness have a stigma around it as well. Some people believe that I suffer from hysteria, that I am emotionally and mentally unbalanced due to an imbalance of hormones. This isn’t accurate. While I will admit that I have PMS that makes me a bit difficult for my husband once a month, I can honestly say that I’m not mentally ill and in need of a holiday at an institution. 

            In a way, we (the sufferers of invisible illness) keep the stigma around our illnesses going because we hide ourselves on our worst days. People will see us only when we are having good, pain free days. So when they see photos online, or posts about our pain, or other symptoms on social media, they aren’t sure of the validity of our illness. It goes both ways…some people believe that we shouldn’t be able to do anything at all since we are chronically ill. So if we post pictures of us having fun, traveling, or simply having a good, pain free day, we are seen as fakers. By hiding away on my worst days, then seeing me happy, and pain free, out an about…confuses people. How can someone who is in so much pain and so sick, go out and have fun? Honestly, people would be amazed at what I do even while I am in pain. I still have a family and household to care for, even with a chronic illness.

            Don’t judge people when they tell you that they have a chronic illness. Just because they look normal whenever you see them doesn’t give you the right to judge and label them. Think about how often you really see that person, in person. I can promise you, my illness embarrasses me. I want to be normal. I want to feel normal. I need those days where I am mostly pain free, those days of normalcy, to keep me going. And so do others. Invisible illnesses are the hardest for people to understand. It’s important to remember that just because you can’t see their problem, doesn’t mean that there isn’t one. 

“A daughter is one of the most beautiful gifts this world has to give.” ~Laurel Atherton

To My Little Bird,

            You’ve always known that I was different from other mothers. You are old enough to know that mommy has endometriosis. While you may not understand exactly what that means, you know it means that Mommy is sick and is limited by pain. This is the only “me” you have ever known.

            I want to apologize for those times when I am unable to do things with you. I am so sorry that I’m sick. I will make it up to you one day. I only want you to be happy. My illness isn’t your fault. The illness isn’t my fault either. I’m only human. I didn’t ask for this, nor do I deserve it. I will always try to do things with you. We may have to adjust the day we plan to play, where we play, or even how exactly we play.

            You are my world. You and your father saved my life. Both of you make life worth living. Thank you for the love you give me; unconditionally, even on bad days. Your love is that light at the end of the tunnel even on my worst days. I focus on you and that keeps me going, fueling me infinitely. I love you. I pray that you will never know what endometriosis is like. I pray that you will always be happy, healthy, and pain free. Thank you, Little Bird. You are my favorite person in the whole wide world!

                                                                                                Sincerely,

                                                                                                Your “Super” Mom

I have a best friend as a husband and he is my number one supporter. He’s a family man, and he’s always giving back to God. That is what makes him a beautiful man. We’re not perfect by any means, but that makes us beautiful as well. We’re not afraid to say we’re not perfect. We have our disagreements, but that comes along with marriage. ~ Tamera Mowry

Dearest Love,

            I told you about endometriosis the day we met. Things were different then. My illness hadn’t progressed very far. Endometriosis hadn’t taken over my life. I didn’t know things would change so drastically just a few years after we were married. I wish I had known how devastating and progressive endometriosis really is. I wish I had known that I would develop adenomyosis. I wish I had known that pregnancy would be so difficult for us. I would have warned you, that rainy day in February, when we met for lunch.

            I carried so much baggage into this relationship. Baggage I wasn’t prepared for, baggage that I had no idea how to prepare you for. When you asked me to become your wife, you were not expecting to become a caretaker. There aren’t many men out there who would have stayed. You dove in head first. You came to every doctor’s appointment with me. You asked questions for yourself, and for me when I was too timid, too shocked, or in too much pain to do so. You’ve spent hours reading about endometriosis and adenomyosis, online and in books. You made friends with women who were like me, and introduced me to women who became my sisters. I hate knowing that you have seen me at my upmost worse. I hate feeling so weak. You have become my rock.

            While other people didn’t believe the amount of pain I’ve been in, you always believed me. You understand the effort it takes me to get through a normal day. You remind me to rest on my good days; to help prevent a bad day. You remind me that the disease is just an aspect of my life, and not who I am. Endometriosis isn’t my whole life. You are always keeping me positive. When I feel like a failure, because I’m physically unable to do something our daughter wants to do, you remind me of everything that I do for you both everyday…and that tomorrow is another day.  You have carried me, helped me walk, helped me in and out of the tub, picked me up off the floor, helped me sit and lay down. I’ve watched you pray over me while I screamed, cried, begging for death or relief.

I hope that I thank you enough. I hope I tell you how much I love you often enough. You and your love make my life better. I hope that I never take you, your kindness, and your love for granted. You don’t see endometriosis as a burden. You see it as our common enemy, which we need to fight together. You don’t see it as baggage. Having you in my life has been a blessing. I just hope that I’m just as much of a blessing in your life to you.

Thank you for loving me. Thank you for being my best friend and support system. I love you more today than I did when we married. I love you more, and more, every single day.

                                                                                    Sincerely,

                                                                                    Your (super strong) Wife