Health, Unveiling Invisible Illnesses

Invisible Illnesses Unveiled- Cervical Cancer and Endometriosis

This photo was taken 2 weeks after I had a conization, a cone-shaped piece of tissue, removed from the cervix. Before that procedure, I had 5 biopsies on my cervix showing precancerous dysplasia CIN3.

A week before this photo was taken, I was told I had cervical cancer. I had micro invasions in the margins where my cone biopsy was taken. Sometimes this procedure removes the bad cells and you are done. However, occasionally the margins are still positive and further treatment is required.

When I walked into the office, having fevers and recovering from the procedure, I came in to follow up and get answers from the pathology. I sat down in her office, distracted by the vibrant decor… black, white and silver glam office, reminding me of a salon or just a really girly office. My nervous mind wandering. What should I do for the rest of the day? Where should I get lunch?

“You have cancer. The margins are positive and this all happened so fast, meaning that it is super aggressive. The area of the micro invasions are up closer to your uterus and blood vessels so I am also worried about it spreading. You will need to see an oncologist for a hysterectomy and possibly further treatment.”

I steered my gaze from the sparking decor and looked her in the eyes, eyes of concern and dread for giving bad news to me every time I see her. My thoughts are whirling as I think about how this can’t possibly be real. My vision blurs as tears welt up in disbelief and fear. I have three kids and an amazing husband that I adore. I have a compromised heart that can’t handle much and still struggle to get my health under control… How can I go through this?

The appointment felt like a break up as I got passed along to a male doctor I have never met, an hour away after finally trusting this doctor and an appointment a couple weeks later, which felt like eternity.

Just before this photo was taken, my husband and I got bikes to ride on the beach. I was feeling great and it was beautiful. I still was processing the news but made the decision to remain calm and patient. We were on a trip in Miami South Beach. After riding the bikes for only a few minutes, I got dizzy and clammy. “Sorry to cut this short, babe, but I don’t feel well and I want to go back to the room.”

My sweet, understanding husband got the bikes returned and we went to our room on the 10th floor with a gorgeous view. A few hours later, I started hemorrhaging. I ended up in the Miami ER for 7 hours, finally being discharged so that we could return home and see my doctor.

Now, as I write this, I am almost two weeks post op from my hysterectomy and my pathology was cleared for no further treatment and I am cancer free. Though I did have to go back to the hospital for two broad spectrum IV antibiotics for two days, I am doing well.

I would not wish this roller coaster on anyone but I am so grateful it wasn’t worse. It could have been worse. I could be still fighting. Before I came in for my one week hysterectomy post op appointment, I said to myself, “If there is more, I am done. I will live my life happy and will not do any further treatment or put my heart through anything more.” I was so lucky. I am so lucky and grateful.

I will say, as someone who suffered from severe endometriosis most of my life, close to two decades, I wish I had a hysterectomy sooner. I put it off for so long, worried about everyone’s opinions and fears. I am excited to start this new chapter of my life of no suffering. I want to buy white pants to celebrate! Two weeks of every month will be mine again, not lost in bed with migraines, severe pain, chest tightness, fevers, fatigue, nausea, IBS and depression.

If you have severe endometriosis, a hysterectomy is nothing but just one last period cramp. You’ll do fine!

Body and Beauty, Health, Unveiling Invisible Illnesses

Unveiling Invisible Illnesses – War Paint

I always try to smooth my hair and conceal my tired eyes. I always dust on a peachy pink blush and a fun lip color, regardless of how I feel. This is the mask of an invisible illness warrior. Occasionally, there are days that I struggle to even lift a limb to put on my war paint. On those days when I bare a naked face and join society, I get told over and over and over again, “You look tired.”

When someone looks exhausted or drained, instead try asking if they need anything or offer help, a compliment or anything positive. I wear makeup to hide when my face goes pale while my blood pressure drops and my body starts going numb, ringing in my ears or the sound of my pulse takes over while my vision starts to sparkle or fade. I wear lipstick to hide the loss of color while I brace myself against the wall or casually sit down and continue to smile and listen to your day.

Every day is a struggle, whether it is big or small. On the really bad days, it is a lonely world and it feels like no one understand. When you try to reach out, no one listens because they think you are young and healthy and perfectly fine. It feels dismissive and disheartening, quiet and empty as you hope for tomorrow to be a better day.

music

9 Impactful Music Albums

I have seen a recent music movement on Facebook music, which tugged at my heart strings. I am doing the 10 day challenge of albums that impacted my life, but of course I had to change all the rules. I am doing 9 albums, because that is what fits in the college template. I am doing them all in one post because I don’t want to commit to 9 days of posting when I can all at once and instead of choosing someone to nominate for the challenge, I nominate you all!

Led Zeppelin, “Going To California” reminds me of my childhood. The windows in the car rolled down while staring out of the backseat window as my hair tangles in the wind and the warm air and cold AC collide. Long road trips and excitement for adventure while music blasts in car meant it was Summertime. I loved our summer road trips

Smashing Pumpkins was not only a favorite in my early teens but a favorite long into my 20s. Billy Corgan almost felt like a long lost cousin or best friend who gets me. My bedroom walls were purple and I had a glitter cord phone, my own phone line. I was artsy fartsy and wore strange clothes.

Sia, 1000 Forms of Fear. Fast forward to a few years ago when I moved away and came right back thinking my world fell apart and that I was a failure. One day, I woke up and decided I was done being so hard on myself and miserable and wanted to change my perspective. I was finally open to being open. I listened to this album a 1000 times and each song was meant for this chapter in my life and I felt so empowered and had so much growth in my life. The hopelessness in the past turned into appreciation and rolling with the punches with a smile on my face. I got this!

Bjork. She is my queen. This weird creature with lyrics so piercing and a voice so different started my rebirth into a new musical era. I remember some of my first few albums such as Brandy, Toni Braxton and TLC. I loved them. I always loved a strong female voice and women in music. Bjork was different. Kind of like Tori Amos, the way she expressed herself was much deeper than what everyone else was doing. I felt like I just discovered a new world where I could belong.

Garbage. Shirley Manson was a badass. Again, I always admired women in music. Teenage angst meets punk rock princess. She was a real musician, not a pretty girl who stood in front of a microphone in heels, singing someone else’s songs. I also was obsessed with the band Orgy. 98 Degrees and Backstreet Boys were not my cup of tea.

Radiohead. I love, LOVE Radiohead. I remember getting on their street team when I was 15 and in the mail I received a ton of Kid A stickers with the bear design to pass out. I have listened to every single album, every song, a million times. Thom Yorke is a genius. Some people meditate. I listened to Radiohead.

Alabama Shakes. This album makes me think about my stomach engulfing millions of butterflies that fly into my chest and flutter into my head. My husband introduced me to Alabama Shakes and every kiss was and still melts my soul. I felt (and still feel) so overwhelmed with happiness and love. The way he looks into my eyes, laughing all night and nervously hoping this isn’t a dream. I fell in love while this album (and The Pixies, Glass Animals and Shakey Graves as well) filled my ears and heart. I was with my future husband and everything was perfect. I love this man so much and how much our love has grown since the silly beginning of our time. It’s like time froze but we learn more each day.

Nirvana was first introduced to my because my brother listened to them. I think his first CD was Pearl Jam. Is that silly that I can even remember my brother’s first album? He was a skater and had a skater haircut and we were transplants from Southern California to the Midwest. We actually even lived in Portland in 1994, prime music era for Elliott Smith and the birth of grunge, but I was only 10 at the time and listening to Red Hot Chili Peppers Under The Bridge, missing California instead. Later we discovered our love for Kurt Cobain…. but still! We were right there!

No Doubt is a classic. Gwen was my idol. I wanted to be her. She was so cool but still this wholesome and humble young chick with spunk and style. I also loved Jewel and bought her book. I was a total fan girl for her writing. Anyway, No Doubt’s Tragic Kingdom made me want more and when I discovered their earlier albums I learned about Ska and that opened a door to discover The Slackers and a whole new subculture. Random, but I listed to a lot of Coolio on the days I skipped school at Nixa Junior High.

Music has always been a huge part of my life, gracing many moments with a soundtrack. Now, it is your turn! What music impacted your life?

Honorable Mentions: Yeah Yeah Yeahs, Cursive, Ramones, Avett Brothers, The Shins, Velvet Underground, Salt-N-Pepa, The Coral, Fugees, Fugazi, Metric, Tegan and Sara, Weezer, David Bowie

Health, Unveiling Invisible Illnesses

Unveiling Invisible Illnesses – Ménière’s Disease

I will never stop dreaming. My wanderlust will never die in me. I will never stop wanting my best life ever, no matter how sick I feel. -Leah

Ménière’s Disease is an inner ear disorder that causes episodes of vertigo. Triggers can be caused by stress, pressure changes, emotional distress, certain foods, physical fatigue, additional illnesses and too much salt in your diet. Tinnitus and hearing loss may become worse over time. You may have periods of time in remission or you may also experience continuous attacks. Attacks can appear without warning and can last hours, sometimes taking days to resolve completely. Unpredictable attacks may lead to anxiety and depression.

I interviewed Leah about her chronic and invisible illness. She is an incredibly positive woman who always fights for strength and courage through tough times and often looking at someone who seems poised and put together, we never see their emotional and physical battles. Leah shares her story with us.

What is your official diagnosis?

Ménière’s Disease. Treatment can help but there is no cure. It is a chronic lifelong autoimmune disease.

How has this affected your life? How about your mood?

Ménière’s Disease has affected my life in many ways. I have lost the majority of my hearing in my left ear and also have constant tinnitus, an annoying ringing in the ears. I have random and sudden onsets of severe vertigo that leads to nausea, vomiting, migraines, sweating, irregular heartbeat, sensitivity to light and sound and also sudden drop attacks. As a result, I have had to cut down to working part time which has been a financial strain, limit driving, change my diet and eliminate or lessen certain triggers such as stress, caffeine, alcohol and certain stores like Walmart.

Ménière’s Disease has affected my mood tremendously. Some days are better than others. I have a lot more anxiety and feelings of guilt than I have ever encountered in my life. I also struggle with adjustment issues. As a result, I’ve been seeing a therapist once a week for several months. It is very beneficial to my life and the lives of my family and loved ones.

At a glance, you look healthy. Would you say that people don’t quite understand the severity of your illness? How had this made certain aspects of your life difficult, such as career and relationships?

Absolutely! Friends and coworkers will often say “You look so healthy and beautiful, how could you possibly be so sick?”

I explain to them that taking care of my looks, whether it be styling my hair, wearing make up, or wearing a nice outfit, it helps my mood. I may feel awful but taking care of my physical features helps raise my self esteem when I’m having a bad health day. My illness has affected my career significantly. I have to work in a certain setting that will not induce an episode. Fortunately, I work in a medical setting and most of my coworkers are understanding. My illness hasn’t effected my personal relationships as much, as I am grateful to have very understanding a supportive friends and family. I do at times, however, feel guilty when I have to reschedule plans or cancel last minute due to feeling ill. Feeling like a burden to others has been something I have struggled with, but since I started seeing my therapist, I have learned how to manage and cope with those feelings.

What inspires you?

My family and my pursuit in enjoying all the adventures life has to offer is what inspires me. My children and family keep me strong and motivated to live a happy life. Even though I have this illness, I never ever let it stop me from trying new things, traveling, and adventuring!

What are 3 things you can’t live without?

1. I can’t live without my beautiful loving children, my supportive family and my compassionate friends.

2. Avocados

3. Star Wars

Favorite quote?

My favorite quote comes from The Dalai Lama –

Each of you should feel that you have great potential and that, with self-confidence and a little more effort, change really is possible if you want it. If you feel that your present way of life is unpleasant or has some difficulties, then don’t look at these negative things. See the positive side, the potential, and make an effort. ~ The Dalai Lama

What advice would you have for people newly diagnosed with your same illness?

My advice to those newly diagnosed with Meniere’s Disease would be to not give up on life. Just because there are certain things you have to limit or can’t do anymore doesn’t mean you can’t live a fulfilling life. Make adjustments to accommodate your life. Don’t ever feel like a burden! People who love and support you won’t feel this way. And lastly you are not alone nor invisible. Reach out to friends, family, groups that have advice on your illness and counseling. You can survive this!

*Something I’d like to add is that just like you and so many of us living daily with invisible illness, I don’t let the illness stop me from being a mom of two, working full time again now, and going to school full time, as well as trying to be a decent human being and live all the adventures that life has to offer. Even though it is tough, I want other MD sufferers to know it is possible to go for your dreams and achieve them.

photography, Salon Life

Mermaid Morning

I have always loved mermaids! I got Manic Panic from the Premiere Orlando hair show and decided to play. My model, Frazier was previously featured in my Invisible Illnesses Unveiled feature. Check out the photo shoot we did this morning.

Hair/Makeup/Photography: Misti Blu Day

YouTube Video

Health

Get Yourself Off The Back Burner

Why are we so damn hard on ourselves? We will cut someone off in a heart beat and forgive someone who walks all over us so easily but we hate on ourselves our whole lives for the pettiest mistakes. Life is full of personal mistakes and it is our journey with experiences that make us the strong person we become and we all need to learn how to forgive ourselves as we deserve that more than anyone else. It’s time to stop being so hard on yourself, stop judging your every moment, embrace your flaws, strive for the best but appreciate your mistakes that are merely seeds that blossom into wisdom. You are beautiful, strong and you deserve the best from yourself.

*photo by Nicole Borges Photography

Health, Unveiling Invisible Illnesses

Unveiling Invisible Illnesses – Type 1 Diabetes

Frazier has been a diabetic warrior since the age of 12. She is a young, vibrant woman with a fun personality and doesn’t let the illness define her, yet advocates for others and is making the effort to help younger generations on how to cope and live their lives. I interviewed Frazier and around that time she was in the hospital. She rides her sense of humor as a strength to keep her chin up during tough times. Support is everything! It’s not easy and it can be scary but it is important to be happy and take care of yourself.

What is your invisible illness?

Type one diabetes

When and how were you diagnosed?

I was 12 years old. I went in for a double ear infection, got lab work done and I was diagnosed with type one diabetes.

What were your struggles and fear after diagnosis?

At first I didn’t fully grasp the full weight of my disease. Later, I realized how much work it was going to take. I was in denial for a very long time and I thought that ignoring it would make it go away.

Frazier is very involved with Florida Diabetes Camp. She was a camper from 2005-2010, then became a volunteer. She helps the kids learn how to manage diabetes and shows them that they can do anything that non diabetics can. She wears an insulin pump to help regulate her sugars on a daily basis. “I have to count the carbs that I eat, then give myself a dose of insulin to keep my sugar at a normal level. My blood sugar goal is between 80-130. It’s a balancing game that is super important. If I let it get of our control I can end up in the hospital with a DKA, diabetic ketoacidoais. Which is why I’m here now.” (hospital)

What advice do you have for anyone going through a new diagnosis?

Get a good support system. It is very important to have people in your corner. Also tell your friends and close people around you that you have this disease. One day they might save your life.

What are your goals and dreams in life?

I want to be a mom. I have always love kids, even to the point that I geared my education towards a career that includes children.

Three things you cannot live without:

Coffee, diabetes supplies, friends and family.

Favorite Quote:

“I have diabetes, diabetes does not have me.”