Health, Unveiling Invisible Illnesses

Sleep Apnea

I remember when I was 16, telling a doctor that I stopped breathing in my sleep. “No. Not at your age. I don’t believe you.”

For the last 5 months, I fought for a sleep study. I was denied because of my age and weight. After making several calls, hours on the phone on different occasions, I finally got approved.

Two days after my test I was called and referred to a pulmonologist. In 4 hours and 13 minutes, I stopped breathing 27 times with an average duration of 49 seconds. The highest duration was 117 seconds!

My point is, don’t ever give up. Keep fighting and I believe you.

It’s a bittersweet sweet moment to get these results back. Part of my is relieved to finally get help, answers and care as well as prove that I wasn’t crazy and to not be dismissed anymore. The other part of me wishes they were right and that I was just a hypochondriac.

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.

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.

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.”

Health

Everything Is Going To Be Fine

Talking to certain friends can be very difficult or even stressful. I have learned that not all friends are cut out for every conversation. Some friends are fun and want to talk about who they have a crush on, silly poop jokes or their current laundry situation. That is always great to have but sometimes it isn’t enough.

I often have stressful news about my health and I used to get resentful and angry that when I would talk to my close friends, they would immediately change the topic and talk about something mundane or random, having nothing to do with what I just said. It made me feel completely dismissed. The following day, sometimes I would think that maybe they would check on me and see how I was doing, but they never did. It was like I never said anything.

Recently, I had a health scare and they all told me, “Everything is going to be fine.” I am a pretty positive person and I appreciate it when I have a positive conversation, but sometimes I just want to talk about real life. Sometimes, everything is not fine. Maybe it will be fine again, and damn… we are going to try, but life can be scary. I don’t think it is always okay to sugar coat, dismiss and repaint a picture. Let’s talk what is real, make a plan, support each other and bitch about the battle. Sometimes people just need to vent. The worst part is that the scare turned into reality and everything was not fine. Their response to that was pretty much the same. “It will be okay!”

I decided to not be upset with my close friends anymore, despite their inattentiveness. I realized they were not the friends I go to when shit hits the fan or if I need them for anything serious. I think I also realized that I am usually the one they go to when they need someone or maybe they just don’t want to believe there is anything wrong with me. That is what I like to tell myself anyway. What I did realize is that I did have some friends who also had health battles and that I could talk to them. I also see a therapist so she is more cut out for the job than those other friends and it helps me to depend on them less.

Joining support groups online or on Facebook has also been beneficial for learning more about your health issues and finding people who understand.

It is important to know that when you are a warrior and constantly battling your health, not everyone has been to war. Not everyone is a soldier and not everyone understands. Find your army, keep your chin up and don’t let those in the sidelines upset you for not knowing how to fight.