Polycystic Ovary Syndrome (PCOS) Warrior Interview

Polycystic Ovary Syndrome Authentic Awareness

This September we set out to interview a real life Polycystic Ovary Syndrome (PCOS) warrior for the United States’ federally recognized Polycystic Ovary Syndrome awareness month. PCOS affects 1 in 10 women in the United States and across the globe. This means it is likely you or someone you know who silently suffers from this condition. PCOS is gender specific, only women can get it, and it involves discussing some symptoms that are considered taboo, which is why so many women suffer in silence for so long. We at the Unchargeables want to encourage you to take the Polycystic Ovary Syndrome Awareness Association’s Tell Someone Tuesday challenge and talk to one another. More importantly, talk to your doctor about PCOS. Heather Humrich, a PCOS Warrior from Suwanee, Georgia and I sat down in her home to discuss the impact PCOS has had on her life, how she discovered the condition, how she manages today and what you might need to do if your doctor is not taking your concerns seriously. Below you’ll find a summary of our conversation.

Early Symptoms of Polycystic Ovary Syndrome

T.J. Q1.) What are the first symptoms an individual with PCOS might notice?

The first symptoms someone might notice are irregular periods, extra hair growth, particularly in places most women do not grow a lot of extra hair, such as on the face, and a pinprick type pain in the ovaries. Insulin resistance is another often overlooked symptom which might look like weight gain or difficulty maintaining a healthy weight despite an active lifestyle. Heather recalled that as a teenager her periods were often lighter and occurred over a shorter period than some of her friends. Without a frame of reference she thought this was ‘normal’ and that she was lucky. As a cheerleader at her high school she was always very active, so it was not until later in her life that she noticed she seemed to struggle to maintain a healthy weight.

Polycystic Ovary Syndrome is a Hormonal Disorder

T.J.) The Mayo Clinic describes PCOS as a “hormonal disorder” with an “unknown cause”. Often with conditions that primarily impact women there is little research dedicated to finding causes or effective treatments. Despite 1 in 10 women being impacted by PCOS this seems to be true. Awareness month is this September and we’re trying to do our part to get people talking to their doctor’s about their symptoms.

T.J. Q2.) While every woman is different and their experiences vary, please tell us a little bit about how you came to get an accurate diagnosis.

For Heather, and many other women, PCOS is discovered when a woman has trouble conceiving. As part of an infertility diagnosis, imaging and lab work was done to confirm the PCOS diagnosis. In Heather’s situation, there were visible changes to her ovaries. Her doctor commented that it looked like one of them had rings around it like the planet Saturn.

Polycystic Ovary Syndrome and Fertility

T.J. Q3.) Can you tell us a little bit about your journey to wellness that eventually led to my amazing nephew and niece being born?

Heather was referred to an endocrinologist that specialized in fertility. She was started on the prescription medication Metformin and consulted with a health coach that specialized in helping her create a healthy diet plan. Regulating her insulin was a big part of her recovery and remains a part of her wellness plan today. Heather considers herself fortunate to have had access to quality healthcare because in 2006 PCOS was still largely unrecognized.

Living Well With Polycystic Ovary Syndrome

T.J.) Modern, aka Western, medicine seems to primarily focus on pharmaceuticals for symptoms, such as anti-depressants or birth control pills, or medications that treat a co-occurring condition such as diabetes; although, there are some lifestyle changes recommended such as getting more exercise or losing weight. Many women prefer more natural (sometimes called alternative) therapies. The idea behind this next question is to give our readers a real person’s strategy for managing PCOS.

Q4) What strategies have you found helpful in managing your PCOS now and what impact does the condition still have on your daily life?

Heather uses a health coach that helps her stay on track by making surprise pantry inspections. Yes, really! Supplements are a big part of her health regime as she prefers more natural remedies. Choosing organic products free of added hormones, especially when it comes to meats and dairy, are an important part of her lifestyle choices. She avoids artificial sweeteners and balances indulgences with hard work. Running is an important part of Heather’s week and she says it not only combats mental health symptoms like anxiety or depression, but allows her to enjoy occasional sweets and that glass (or two) of wine on the weekends. It takes dedication to find what works and to stick with it, but balance is essential for limiting the impact PCOS can have on your life. Support programs that offer motivation to reach weight loss goals can be very beneficial in staying on track. Heather strives to include lean protein throughout her day but especially if she knows she might be indulging in something sweet. For one of the more annoying symptoms Heather recommends finding a good esthetician that can wax away the unwanted hair so you can you continue feeling like the beautiful bad-ass that you are.

Finding the Right Doctor to Diagnosis Polycystic Ovary Syndrome

T.J.) A lot of women don’t realize that they have PCOS until they experience complications. This can include sleep apnea, mood disorders, metabolic syndrome or diabetes. For a lot of women, including for you, this can manifest as infertility struggles which leads to a diagnosis. Women that are not trying to conceive are less likely to be diagnosed.

T.J. Q5) What advice do you have for women that might feel discouraged because either their doctor isn’t taking them seriously or they are uncomfortable discussing some of the symptoms?

This was an easy question for Heather to answer. If your doctor is not taking you seriously, find a new doctor. There are a lot of good doctors out there. Running the tests required to get an accurate Polycystic Ovary Syndrome diagnosis is not difficult nor particularly expensive, so there’s no reason that it can’t be done even if all it does it rule out PCOS.

Awareness Ribbon

Every disease has an awareness ribbon, including Polycystic Ovary Syndrome (PCOS). Teal is the awareness ribbon color for PCOS and PCOS awareness items can be found in the Unchargeables Shop.

About Author T.J. Madden

T.J. is a contributing author for The Unchargeables, manages The Unchargeables Twitter feed volunteers, and is the newly appointed administrator for the Caregivers Support Group. She describes herself as a Reader, Writer, Baker, Teacher, Chicken Soup Maker, and Fighter for all Things Healthier, Stronger, Kinder, and Better than Yesterday

September 21, 2018July 15, 2019

Chronic Illness Perspective Attending Warped Tour: Part Two

Chargie Goes Warped Part 2

Attending Warped Tour from a Chronic Illness Perspective

The people you meet at Warped Tour are some of the kindest people in the world. Everyone has a different walk of life and their own struggles, mine happens to be Ehler’s-Danlos Syndrome (EDS); yet, on that one day all differences are pushed aside. Everyone shares a bond stronger than most: a love for music.

Story Untold

I was grateful for a saved spot. People began talking and sharing laughs before the next scheduled set was to appear. Never having heard Story Untold before the person next to me encouraged staying saying they were pretty cool. I love discovering new music so I locked my wheels and prepared to be amazed by a new band. Just as I anticipated, I became entranced with their sound and thoroughly enjoyed their set, even if they reminded me of an off brand All Time Low from Canada. Janick Thibault, vocalist of Story Untold, looked just like Alex Gazkarth, vocalist of All Time Low. If it was not for Janick’s tattoo sleeve, one could not be blamed for thinking up conspiracies that Janick is actually a clone of Alex who was shipped as a baby to Canada. Along with their awesome original music, I was thrilled when the band threw a curve-ball of nostalgia to the crowd by covering classic Warped Tour bands in a pop punk mashup.

Where Will We Find New Music Now

Warped Tour was always good for introducing people to new music and creating gateways to fan bases. In 2016 I heard a band called Pepper play their set while I was in line to meet a band by the main stage. I fell in love with their sound and am proud to call myself a fan of their music today. It is a little sad that this is another loss from the end of Warped Tours.

As It Is

I found myself singing along to As It Is’s set-list while waiting in the merchandise line for Sleep on it. I was super excited to hear the newest As It Is songs performed live. At the time their third full length album, The Great Depression, had yet to be released. The only two songs from the album available to the public were The Wounded World and The Stigma: Boys Don’t Cry. The Wounded World was about how society is always quick to blame everyone else except for themselves, which in itself is hypocritical. We are so busy pointing the finger and then pulling the same trigger. The Stigma was about breaking the stigma that “boys don’t cry” and that it is okay for boys to both feel and show emotion. Hearing both played live and shouting them at the the top of my lungs was absolutely rattling and surreal.

Set It Off

Arriving at the Living the Dream Foundation riser just as Set It Off was playing Killer in the Mirror meant the first two songs, Uncontainable and The Haunting were missed. This information was found on Twitter. The internet is a great place to find leaked set lists and any spoiler imagined. Since I was still using the wheelchair I used the lift to get on the riser while my dad took the stairs. Set It Off were only performing on three Warped Dates and their fall tour did not include a Boston date. I was extremely grateful for catching as much as I possibly could. Who knew when I was going to see them again? After The Killer in the Mirror I was surprised and enthralled that N.M.E was playing. N.M.E stood for No More Excuses and was one of my favorites off of their second full length album, Duality.

Why Worry

As always, Set It Off ended their set in the best way possible with Why Worry. Why Worry usually begins with a sing along. Yet, this show Set It Off went right into it. They even brought on a kid from backstage to sing the chorus before the bridge. The only thing that really bugged me about this show is that with the new era being brought on, the Duality diamond has disappeared and turned into an hourglass. That meant instead of ending the shows with hands forming the diamond when Cody Carson, vocalist of Set It Off, says “We are Set. It. Off” at the end of their set, arms were crossed to form an hourglass. The duality diamond is supposed to represent the balance and duality of good and evil inside a person. The quote from the song “Duality” from the album, Duality, is “I am good, I am evil, I am chaos, I am solace, I am human. And that’s all I ever wanted to be.” That was the representation of the logo being a diamond. To change the logo was to change everything.

Simple Plan

Immediately after Set It Off’s set on the Journey’s Left Foot stage Simple Plan started their set on the Journey’s Right Foot stage playing “I’d Do Anything”. Simple Plan was absolutely amazing. I planned on watching a few of their songs and then going down the lift to meet Set It Off before returning the wheelchair and using my cane again. But, the wheelchair lift operator was off the platform. Good news was that I got to stay to watch them shoot water at the crowd using super-soakers and play classic hits like “Jump” and “Addicted”. When I finally made it on the ground, Simple Plan was ending their set with “I’m Just a Kid” and the line for the Set It Off signing was about a half a mile long! It took the rest of Simple Plan plus the whole entire 3OH3! set before I could finally meet the band and have them sign my notebooks as well as for Cody to write down a quote for me. I had Cody write the lyrics “Devour the critics, dismiss the critics” from the song Dream Catcher because I wanted to get that tattooed on my forearm in his handwriting. Having the lyrics just written down inspires me to not care what anyone has to say while I waiting to get the tattoo. I will continue to fight for my dreams and not let anyone push me away from them.

Dieter Unrath

Immediately after meeting Set It Off it was time to return the wheelchair. I took my cane and went on a search to find Dieter Unrath, photographer/drummer/catering/awesome person, so I could interview him. Once we found each other we made our way to a quieter place near the amphitheater and sat down to have a chat about mental health in general and on tour. Talking with Dieter was an incredible and engaging experience. We went over how tour is both physically and emotionally exhausting as well as the reasons one should reach out for help. We also discussed healthy vs unhealthy coping mechanisms. You can find the video link here to see the awesome interview:

Wrapping Up Warped Tour

Wrapping up the evening we hit the amphitheater to catch as much of R I L E Y’s set before leaving the grounds early due to my father and I not feeling to well. It was a long hard day in the heat, so leaving a little early was not the worst thing in the world. Besides, health comes first. The aftermath of the festival meant a week of recuperation and soaking in the memories made. The end of Warped Tour after 24 summers is an emotional one, yet I feel proud and blessed to have participated in the last three years. I am inspired to always keep believing in the scene as well as believing in myself and my own capabilities.

About the Author

Hana Belanger is a disability advocate and activist, contributing author for The Unchargeables, slam poet and important part of the Unchargeables Twitter Team. College student and barista by day, music photographer and fan-girl by night, this nerd of all sorts balances chronic illness, a social life, and learning to be an adult. An optimistic gal who always knows where one can turn on the light even in the darkest of times is still trying to find the meaning to life. You can find her living in the moment usually at a concert or cafe with ice packs, a camera, and headphones.

May 23, 2018

Ehlers-Danlos Syndrome: Interview with Lara Bloom

T.J.) ‘Hello’ Ms. Bloom. Thank you for agreeing to answer my Fast Five questions for our Ehlers-Danlos Syndrome (EDS) awareness month article. Our community at The Unchargeables is made up of people with chronic illnesses, many of which are rare or rarely discussed. Many suffer with chronic pain with or without known causes. And many in our community are undiagnosed and still looking for an accurate diagnosis to explain their symptoms.

Q1.) What are the first symptoms an individual with Ehlers-Danlos Syndrome might notice?

L.B.) Usually there is pain. The pain can be relentless. But sometimes for others it may be mast cell, gastrointestinal, neurological or autonomic symptoms. It is always hard to give a ‘usual’ presentation as it is such a complex set of conditions with multisystemic symptoms. Firstly, there are 14 different types that all present differently. Secondly, within those types there is a vast spectrum. Like the zebra – no two people living with EDS have the same stripes.

T.J.) The Mayo Clinic describes Ehlers-Danlos as a “group of inherited disorders that affect your connective tissues – primarily your skin, joints, and blood vessel walls” and lists symptoms as stretchy skin or hypermobile joints; which doesn’t sound that bad. In reality EDS can actually be quite serious and life-impacting. Much more information is available at www.ehlers-danlos.com but I struggle to give what I call my elevator pitch when people ask: What is Ehlers-Danlos?

Q2.) In a minute or less, how do you explain Ehlers-Danlos Syndromes?

L.B.) The Ehlers-Danlos syndromes are a group of connective tissue disorders that can be inherited and are varied both in how they affect the body and in their genetic causes. They are generally characterized by joint hypermobility (joints that stretch further than normal), skin hyperextensibility (skin that can be stretched further than normal), and tissue fragility. Additionally there are a range of multisystemic comorbidities that can occur such as gastrointestinal, autonomic, neurological issues and more! People with the condition live on a vast spectrum. Pathways to early diagnosis, management and care need to improve.

T.J.) I mentioned to you that I suspect my hypermobile teen daughter may have EDS. She was diagnosed with POTS and autonomic dysfunction as well as hypermobility, which some research links to Ehlers-Danlos syndrome. Yet, I have had a difficult time getting an accurate diagnosis. One doctor even said, “There’s nothing that we can do if you have it so it might be better for you not to know.” One doctor agreed to order a blood test but the insurance denied it and by the time I agreed to pay out of pocket they had disposed of the sample. I know we’re not alone in these types of problems. There seems to be a systemic failure to diagnose and treat EDS. Healthcare systems vary widely across the globe and with that in mind…

Q3.) What advice do you have for a person who suspects they may have Ehlers-Danlos Syndrome?

L.B.) Diagnosis is obviously the ideal but more important is the management of the symptoms. Keeping as mobile and active as possible is key to living a better quality of life with EDS and the comorbidities. Often it is through a holistic approach such as diet, exercise and movement, mental health support, and ways to target pain. When you have a symptom you should address that specifically and treat what is there rather than what could be. Not everyone suffers with the same symptoms so it is important to focus on the complications you live with.

T.J.) I am a firm believer that any one individual can make a positive impact in the world. The Ehlers-Danlos Society, which is now recognized as the international authority on EDS awareness, advocacy, and activism, began with one woman’s mission to connect with others. Today social media connects us in new and different ways. Online communities make it possible for individuals to establish new relationships, share resources and gather information much more quickly than in the past. We call our little community The Unchargeables. There’s this whole battery analogy our fearless leader, Natalie, came up with. Essentially we have faulty batteries so we run low on energy. We call ourselves the Chargies.

Q4.) How can people in our community of Chargies help spread the word about Ehlers-Danlos Syndrome and what would you want them to say?

L.B.) They can visit our website and use our free resources such as leaflets, posters, presentations etc. When we are all promoting the same message, using the same terminology, the correct information will get out there. Spread awareness through your own social media platforms and use our hashtags to help the word go viral!

T.J.) Friends and family do not always know what to do or say when they find out someone has a rare, complicated, serious, or even just strange sounding condition. What often comes out is unintentionally hurtful. One of the themes in our support group is “What Not to Say to a Chargie.” Sometimes I can’t believe what I hear! Sharing our hurts helps us remember we aren’t alone. Hopefully it’s a fun way to help advocates and allies learn language that is inappropriate, too.

Q5.) What is your “Lara Bloom’s Ehlers-Danlos What Not to Say to a Chargie?”

L.B.) Don’t say it is in our head. Don’t make us feel bad when we can’t go out or socialise or help around the house. Don’t say it will get better one day. There is no cure for EDS; getting ‘better’ takes hard work and requires support, understanding and patience and we can have good days and bad despite trying our hardest to stay strong.

Thank you for taking the time to answer my questions. We hope this reaches many people and helps increase awareness.

Following is a Fast Five Facts from www.ehlers-danlos.com and other sources as listed.

Fast Five Facts: Ehlers-Danlos Syndrome

1. Current estimates indicate between 1 in 2,500 and 1 in 5,000 people have some form of Ehlers-Danlos Syndrome (EDS) although some advocates say it’s closer to 1 in 1,000.
2. Worldwide over 1.5 million individuals have been diagnosed with EDS.
3. EDS is a genetic condition and a genetic specialist is the most likely to make an accurate diagnosis.
4. According to one Harvard Health Publishing report it takes between 10 and 20 years for patients to get an accurate diagnosis (Kiesel, 2017).
5. There are 13 subtypes of EDS and knowing which one you have is important for many reasons include family planning and preventative care.

About Interviewer T.J. Madden

Reader, Writer, Baker, Teacher, Chicken Soup Maker, Fighter for all things Healthier, Stronger, Kinder, and Better than yesterday.