10 Celebrities Who Live With Fibromyalgia

Fibromyalgia is a condition that affects millions of people in North America. While typically thought of as an “everyday person”s condition, there are a number of celebrities who live with Fibromyalgia who have talked about it in public. It’s helpful to know we’re not alone, and because of these people, Fibromyalgia is starting to gain more recognition.

Here is a list of 10 Celebrities who live with Fibromyalgia.

Lady Gaga

LadyGaga

Lady Gaga is perhaps the most well-known celebrity with Fibromyalgia. After struggling with chronic pain for many years, she confirmed in September 2017 that the cause of her pain was fibromyalgia.

In her Netflix documentary “Gaga: Five Foot Two,” released on September 22/18, Gaga opened up about the challenges of finding treatments and coping techniques to help manage her symptoms. She is seen using ice packs and trying deep massage and dry needling as ways to help manage the pain.

“I am praying that more and more people come forward and we can all share what helps/hurts so we can help each other” Gaga said in a recent tweet.

Morgan Freeman

Morgan Freeman Best Movies and TV Shows

Morgan Freeman is the actor best known for roles in The Shawshank Redemption, The Bucket List with Jack Nicholson and for winning an Academy Award for his role as a beaten up cornerman for Clint Eastwood in Million Dollar Baby.

In 2008, Morgan Freeman was involved in a car crash that left him with multiple injuries, including a shattered left arm. He went through a 4-hour long surgery to save his arm and has talked in several interviews since he continues to experience “excruciating” nerve pain and now lives with fibromyalgia.

In 2015 he told The Daily Beast he treats the pain with marijuana. “Marijuana has many useful uses,” he says. “I have fibromyalgia pain in this arm, and the only thing that offers any relief is marijuana”.

Lena Dunham

Though she had previously been vocal about her struggles with endometriosis and chronic pain, Lena Dunham revealed in an Instagram post in October of 2018 that she has fibromyalgia. She described what it’s like to have an “invisible” illness like fibro, writing, “I appear to be totally able-bodied but it’s complex, and I am just trying to do everything required to maintain a life of joy and service. My work costs everything I have. This is fibromyalgia. It’s little understood and so even though I have a lot of knowledge and support it’s hard to shake the feeling I am crazy. But I’m not (at least not this way!) and you’re not.”

Dunham continued to say that pain, however it presents — whether it has a visible culprit or not — is valid. She wrote, “Your pain, whatever shape it takes, is yours and so it is real. I believe you when you say you hurt. I have learned time and time again how important it is to believe.”

Sinead O’Connor


Sinead O’Connor is an Irish singer-songwriter who stepped away from music in 2003 because she was struggling with fibromyalgia and wanted to take care of her children.

“Fibromyalgia is not curable. But it’s manageable,” O’Connor said in a 2005 interview with HOTPRESS. “I have a high pain threshold, so that helps – it’s the tiredness part that I have difficulty with. You get to know your patterns and limits, though, so you can work and plan around it. It is made worse, obviously, by stress. So you have to try to keep life quiet and peaceful.”

Sinead returned to the music scene in 2005. Despite numerous setbacks, she said she hopes to continue singing and doing what she loves but stays away from the parts that cause her excessive stress, which can exacerbate fibromyalgia symptoms.

Mary McDonough

“The Waltons” actress Mary McDonough has been very open about her battles with fibromyalgia, lupus and Sjogren’s syndrome. She believes she developed the conditions after having an adverse reaction to breast implants she had inserted in an effort to reinvent herself following the series’ end.

“Within 24 hours I broke out into a rash all over my back and my chest,” McDonough told Smashing Interviews Magazine. “But over the course of the 10 years, I just couldn’t put my finger on that. I just didn’t feel right. The chronic fatigue set in, the rashes, the rash across my nose and the bridge of my face which we now know is like a lupus rash, the joint pain, the muscle stiffness, eventually being diagnosed with fibromyalgia, and then the collagen disorder called Sjogren’s syndrome, my hair fell out and I would be tired all of the time.”

McDonough is now a public speaker, author and workshop leader, often talking with young women about their struggles with body image and self-esteem.

Kyle Richards

“Real Housewives of Beverly Hills” star Kyle Richards said she first became sick while her mom was sick with cancer, but was initially told she was depressed because her mom had passed. 

A friend told her she might have fibromyalgia, so she went to a doctor who specializes in the condition who confirmed her diagnosis. “All of a sudden I felt like I had an answer and I felt better because it causes so much anxiety [not knowing],” Richards said.

Richards has since sought out alternative methods for treating her fibromyalgia pain — on “The Healer,” she worked with Charlie Goldsmith, an “energy healer” who aims to help people reduce their chronic pain.

Janeane Garofalo

Actress and comedian Janeane Garofalo has been very open throughout her career about her struggles with fibromyalgia as well as mental and emotional issues, including anxiety and depression. She has even incorporated her fibro into her stand-up routine, using humour and laughter to cope with the pain she experiences.

“I had no idea I was chronically dissatisfied,” she said about being prescribed an antidepressant for her fibromyalgia.

Michael James Hastings

Michael James Hastings, known for his role as Captain Mike on “The West Wing,” had to retire from being a school teacher at age 35 due to fibromyalgia. It was his chronic pain that led him to move to Los Angeles to pursue a part-time acting career.

Hastings has said that he copes with the symptoms of fibro with natural means, such as supplements, exercise, massage therapy, acupuncture and visits to the chiropractor.

“I also have learned to accept that some days I am not going to be able to keep up with my schedule or other peoples’ schedules and I just need to rest and ‘lighten up,’” he said in an interview with the website Back Pain Relief.

A.J. Langer

a.j. langer

Actress A.J. Langer, best known for her role on “My So-Called Life,” “Seinfeld” and “Three Sisters,” was diagnosed with fibromyalgia as a teenager but continued to pursue acting. After filming “Three Sisters,” Langer took a break to figure out how to manage her symptoms and put her health first. She has experimented with a number of alternative therapies to help her cope with fibromyalgia, including surfing, yoga and meditation.

In an episode of the Aches and Gains podcast with Dr. Paul Christo, Langer said, “There are different levels of learning you go through with fibromyalgia… One is I’m all alone, you know, no one else understands this pain. And then there’s a point you can get to where it becomes universal and you understand that everybody’s got something. I’ve come to terms with the fact that my body has a fragile ecosystem and I’ve gotta tend to it.”

Kirsty Young

Kirsty Young

Kirsty Young, a broadcaster on the BBC Radio 4 show “Desert Island Discs,” announced in 2018 that she would be taking a break from the position due to fibromyalgia. She explained: “Casting away some of the world’s most fascinating people is a wonderful job – however, I’m having to take some time away from Desert Island Discs as I’m suffering from a form of fibromyalgia.”

Young indicated that she hoped to spend some time healing and then return to the show.

 

It’s nice to know that celebrities are just like the rest of us and suffer through the same types of illnesses that we do. I commend all of these people for sharing their stories in the public eye. To them and to you, I say…

There Is Always Hope!

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Interview April – Sharon Sayler

It’s time to meet our next guest, the wonderful Sharon Sayler. I’ve had the pleasure of being a guest on Sharon’s show and she’s delightful. Let’s hear more:

Sharon Sayler Headshot 2017 Hi-Res

Introduce yourself and tell us a bit about you…

First, thank you, Pamela, for creating an excellent platform for which we have this opportunity to share. I enjoy our mutual understanding that through thoughtful sharing of experiences others in our community know that they are not alone. That feeling of ‘am I the only one?’ can be isolating. Building community and awareness of ways to thrive and optimize our health journey are critical.

I’m Sharon Sayler, MBA, PCC and the founder of Competitive Edge Communications. I’m affectionately called the ‘Difficult People Whisperer’ by my clients. As a speaker and trainer, I teach professionals how to enhance their verbal and nonverbal communication skills to achieve their goals. According to GlobalGurus.org, I’m one of the top five experts in body language in the world.

I am also an international best-selling author of several books. A perennial favorite is ‘What Your Body Says and How to Master the Message: Inspire, Influence, Build Trust and Create Lasting Business Relationships’ (Wiley.) I  am also proud to share. I’ve also authored a best-selling children’s book ‘Pinky Chenille and the Rainbow Hunters’ with a second book in the Pinky Chenille series out soon.

Several years ago, life and work took an unexpected turn to become what my friends now call a “compelling-passion.” With my COURAGE communications techniques combined with my own experience dealing with a rare medical condition, I have been teaching others to become courageous self-advocates. Self-advocacy communication techniques can turn life transitions into transformations.

One of the ways I share the messages of ‘thriving regardless of your diagnosis’ and medical self-empowerment is through The Autoimmune Hour, now #1 show on OMTimes Radio along with the @UnderstandingAutoimmune YouTube channel, and the show’s website UnderstandingAutoimmune.com.

Chronic illness(es)/disabilities I have…

I dislike the word ‘have’ as I prefer my unconscious mind not to take ownership, yet for ease of understanding, the label my experience has is autoimmune more specifically Dermatomyositis. 

Dermatomyositis is a rare inflammatory (autoimmune) disease defined by muscle weakness and a distinctive skin rash. The painful, peeling rash had covered 60% of my body by the time I recovered from the initial ‘flare.’ 

My symptoms/condition began…

Suddenly and not so suddenly.  One morning I woke up after a late night cross-country flight and my legs felt incredibly weak. I had to use my arms to move my legs to stand. Although frightened, this seemed to work itself out over the next few hours. I chalked it up as ‘weird’ and kept working. Feeling tired and achy for the next two weeks, I suddenly broke out in hives that soon covered a large percentage of my body.

I realize now I’d had a variety of symptoms long before this episode that fit a wide range of conditions, and it wasn’t until the distinctive skin rash that a definitive diagnosis was made.

My diagnosis process was…

Bizarre to say the least. I had been seeing a specialist for about a year with her proclaiming a variety of diagnoses that didn’t seem to fit….

The day I walked in with the ‘now peeling distinctive skin rash’ she immediately excused herself and came back 10-minutes later with another doctor who without introduction, pulled out a magnifying glass and looked at various parts of the rash, looked at the first doctor, nodded ‘yes,’ and left the room. The first doctor that I had known for a few years dropped her head and slowly apologized to me for having dermatomyositis.

She could have said supercalifragilisticexpialidocious as the word ‘dermatomyositis’ meant nothing to me. The sad-news-body-language told me, ‘it’s not good.’ After that, the words blended together as I struggled internally to understand what she was saying – it was like my ears had stopped hearing and my brain had ‘frozen.’

We parted ways with an understanding I had to see a rheumatologist. Upon reaching the elevator, I immediately ‘googled’ the word, at which time the shock and grief hit hard.

The hardest part of living with my illness/disabilities is…

Losing perspective. Now, that I’ve been through multiple phases of recovery, I realize the worst part is losing perspective on ‘when is an itch, just an itch.’  The slightest change, the smallest strange pain, anything odd or different begins the mental gymnastics of Do I need to worry about this? What does this mean? Is this so important that I must seek medical attention immediately, can it wait until tomorrow, or what if I just let it run-its-course will I be okay?  And of course, dealing with all the new found food and chemical sensitivities as the body defenses seem to be stuck in hyperdrive make social occasions awkward.

A typical day for me involves…

Everything I used to do that I still want to do. The changes I see are I’m more consistent in choosing to set boundaries, say ‘no’ when I want to, remove myself from others drama and be conscious of my decisions and actions around what I should be doing for overall good health such as quality food, stress reduction, sleep, and exercise.

The one thing I cannot live without is…

Spending time creating joy, especially with my beautiful family and friends. Life is too short — spend it giving and receiving love. (And the irresistible passion I have for doing The Autoimmune Hour podcast and video show.)

Being ill/disabled has taught me…

I don’t consider myself ill or disabled, yet I’ve learned to be more patient and understanding. It’s crystal clear now, the old saying ‘that one can never really know what someone else is going through unless you’ve been there too.” My mantra these days is ‘Come from love. Always.’

What advice would I give someone recently diagnosed…

First, if you can, take time to absorb and sit with the ‘bad news.’ If it’s not immediately life-threatening, don’t make any major life decisions right away.

I remember I was told by a ‘top-notch’ doctor to have a surgery that in my mind would have made my life much worse in the long run, and with no real assurance that it would solve the immediate problem… I felt like they were treating me as if they were working on a car like ‘let’s remove the spark plugs and see if that works better….” Upon finding out that it wasn’t immediately necessary, I thanked them and sought a second opinion. 

That second opinion changed my worldview; the second doctor said, “That’s a surgeon’s answer to a problem they cannot solve.” Wise words that I use everywhere now as in each person/expert/etc. has a specific point of view and the more narrow their expertise, the more narrow their recommendations will probably be.

Always run options through the filter of “What are other ways I can view and solve ‘this?’ Remember, it’s okay to ‘fire’ someone. If someone is upset that I seek a second opinion. I say “Thank you for your time and no thank you.” I like to joke that there are as many varied opinions as there are experts.

Second, be careful how you talk about what you are going through. Our words create our reality. Words such as ‘poor me’ and ‘why me? can create our identity. Consider the word ‘have’ and how it denotes ‘ownership’ Do I want to own my diagnosis? No. I prefer to look at the word ‘have’ from the viewpoint that I can ‘have’ cockroaches, but that doesn’t mean I own them and that I can and will eradicate them. When said enough times your words become truth in your mind, and in the minds others too.

I prefer ‘I am having an autoimmune experience or journey.’ A diagnosis is just a label to chart a possible course based on symptoms and the prognosis is based on statistics — work hard to be on the positive side of the stats. Challenge yours and others’ conclusions on what your future will be. On The Autoimmune Hour, we have numerous stories of people thriving regardless of their diagnosis including Pamela who recently shared her Thriver story: www.UnderstandingAutoimmune.com/Jessen/.

My support system is…

My amazing family and friends as well as a team of medical professionals that are in alignment with, or at least, honor my view of ‘my body, my decision.’  And the UnderstandingAutoimmune’s Courage Club Community that is growing every day through the podcast and website.

If I had one-day symptom/disability-free, I would…

Hmmm, I don’t know. I’m finding ways to live fully and thrive regardless of my diagnosis. Maybe eat a whole loaf of fresh baked crusty bread slathered in homemade butter and raw honey at a quaint Parisian cafe!

One positive of having a chronic illness/disability is… 

A deeper appreciation of the quality and value of all life.

My social media links are:

The show can be heard on a major podcast outlets such as OMTimes Radio, Spreaker, iTunes, YouTube and iHeart Radio.

https://www.facebook.com/UnderstandingAutoimmune/

https://www.facebook.com/AutoimmuneHour/

www.UnderstandingAutoimmune.com/OMTimes

www.UnderstandingAutoimmune.com/YouTube

www.UnderstandingAutoimmune.com/Spreaker

Instagram: autoimmunehour  and understandingautoimmune

Twitter: @autoimmunehour

Interview April – Christalle Bodiford

Welcome to Interview April and my first Guest, Christalle Bodiford. Let’s find out all about this lovely young woman:

Christalle-Michael-Schaffer-Photography-8

Introduce yourself and tell us a bit about you… 

My name is Christalle Bodiford, and I’m an adventure-seeking artist and advocate. When I’m not writing, I love being in nature with my husband and pup. I worked in the fashion industry for 12 years but am now building a more balanced lifestyle and making my health a priority. I ran a nonprofit called Life Elektrik for adults with epilepsy that closed at the beginning of March, to allow more freedom in working with others and helping more people.  I felt held back by the organization.  I’m now working on a few new epilepsy advocacy projects, including books, workshops and awareness campaigns, with the first project launching this month!

Chronic illness(es)/disabilities I have…
I have Juvenile Myoclonic Epilepsy with generalized seizures, along with my other life-long friends anxiety and depression. That means my seizures started when I was a juvenile and they are in no specific area of my brain.

My symptoms/condition began…
My first documented seizure was at the age of 13, but I was having seizures prior to that.  I’m not sure of the exact age they started.  I don’t have too many memories prior to 13, aside from the feelings of the seizure auras.

My diagnosis process was…
I received a misdiagnosis at age thirteen and went twelve years of my life with an incorrect disagnosis.  At age thirteen I was told I had a seizure due to hypoglycemia and to keep a piece of candy on me at all times. At the age of twenty-five, I was properly dianosed with epilepsy after having a tonic-clonic seizure, followed by a concussion, the final week of my senior year in college.  My husband (boyfriend at the time) made an appointment and took me to a neurologist for an EEG, which showed abnormal brain waves and seizure activity.

The hardest part of living with my illness/disabilities is…
Being mentally and intellectually capable of so much more than my body allows.  I have so many goals, and my body often can’t keep up with the pace of my passion and drive. I feel held back from reaching my true potential.

A typical day for me involves…
I’m a freelance creative, so a typical day for me is waking up when my body feels right.  I work from home, so I am able to take breaks throughout the day as needed when I’m not feeling 100%.  I’ve recently made my health a priority, which has not been the case in the past. In past experiences, my work came first. I now understand the importance of putting self-care first. I also hold a few volunteer positions that I handle a few times a month.

The one thing I cannot live without is…
Really?  Just one thing!? I guess I have to choose my cell phone, because it’s a necessity in calling for help if I have a seizure. I can also use it for some work projects, so I’m sticking with my answer!

Being ill/disabled has taught me…
Perspective is everything! If you think your life is terrible, it will be. I choose to focus on the things going well in my life, and it lightens the load of the heavier issues.  A positive or optimistic mindset has also helped me to feel better about my diagnosis. This disorder is constantly presenting new lessons and challenges, but I know I can tackle anything if I set my mind to do so.

What advice would I give someone recently diagnosed…
Do your own research, because there is so much misinformation out there.  Find what works best for you in regards to treatment, because we are all different – even if we have the same diagnosis. Most importantly, get back up.  Every. Single. Time.

My support system is…
Support is everything, even when you think you don’t need it.  If you can’t find a support group that is right for you, create your own.  Focus on solutions vs. problems.  I have a small but very supportive circle, and my husband is at the core.  He is my caregiver, best friend, and someone I truly admire.

If I had one day symptom/disability-free I would…
Wow! I really have to think about this one… There are so many things I’d love to do, but I think my anxiety can be more debilitating at times than my seizures, in regards to trying new things.  I think I’d like to go on some type of adventure with my husband that involves heights: sky diving, zip lining, parasailing, or paragliding.

One positive of having a chronic illness/disability is…
Meeting so many incredible people within the epilepsy community has been the highlight of having epilepsy. It’s amazing how connected you can feel to people just by having the same diagnosis. I’ve made friends all over the world.

My social media links are:

Instagram: @christallebodiford

Facebook: @creativeepilepsyadvocate

Twitter: @christalleart

Website: christallebodiford.com

Interview October – Frank

Today on our very last Interview October, we’re meeting Frank Rivera. Here is his story:

Frank’s Bio…  

Frank Rivera founded Sarcoidosis of Long Island in 2012. In 2011 Frank was diagnosed with Sarcoidosis after being misdiagnosed with lung cancer for 7 years prior. Since opening Sarcoidosis of Long Island he has been a local, state and federal advocate for Sarcoidosis. Frank strives to raise awareness for Sarcoidosis nationally, but specifically in the government sector. He has represented the Rare and Sarcoidosis community as a speaker at two Congressional briefings for Sarcoidosis. Frank is a National Ambassador for Foundation for Sarcoidosis Research, was a Global Genes RARE Foundation Alliance Member and was an Advocate, an ambassador for The EveryLife Foundation and a Working Group Member. Named RUGD Ambassador for Illumina October 2017 Frank organized RareNY in 2016, to raise awareness for Rare Diseases in the state of New York. He organized “A Day for Rare Diseases” on October 15th, 2016 in Long Island NY, in partnership with Global Genes, to raise awareness for all 7000+ rare diseases. In recognition of Frank’s efforts, Suffolk County and the town of Brookhaven officially declared October 15th “A Day for Rare Diseases”. In 2017 Frank was named Brookhaven advocate of the year. Frank also is an advocate for “Right to Try” even being interviewed by NBC Nightly News this year.

Chronic illness(es)/disabilities I have… 

Sarcoidosis, Sjogren’s Syndrome, and Parkinson’s and IBS

My symptoms/condition began… 

I was misdiagnosed in 2004, with Lung Cancer. I went through 4 years of chemotherapy and radiation while living in Florida. After the 4 years, I was told I was in remission. In 2011 after moving back to New York, I had problems with my IBS. While in the ER room they took a CT scan of my stomach and part of my lungs were shown in the CT Scan. They found more masses in my lungs. They took a biopsy and said I had Sarcoidosis. I ended going to Mt. Sinai Hospital to their Sarcoidosis clinic in Manhattan. They got my past tests from the hospital in Florida and found out that I had Sarcoidosis the whole time.

The hardest part of living with my illness/disabilities is… 

The pain and that they all are invisible illnesses. People look at me and they say well you look fine. But they don’t know what my insides feel and look like. Sarcoidosis has taken over 90% of my body. The only place I don’t have it is in my liver and kidneys.

A typical day for me involves… 

Everyday I never know how I am going to feel. So there is no real routine. I am on permanent disability. The only thing I do every day I wake up unless I can’t get out of bed is make sure both my wife and daughter have what they need for work and school respectively. I make them their lunch as well as breakfast. After that, I am too tired so I take a nap. Then since I run a non-profit organization I check my emails to see if anyone needs help. If not most of the days I rest. This disease has taken the energy out of me. In April I was downgraded from chronically ill to terminally ill. I used to travel to raise awareness for Sarcoidosis and Rare Diseases. I no longer travel far due to my body not being able to handle the travel and the long days in meetings

The one thing I cannot live without is… 

It may sound funny, but the one thing I need every day is my one cup of coffee every morning.

Being ill/disabled has taught me… 

To value life. It has told me to not sweat the small stuff. I have learned that living each day as the best you can. I also have learned you can’t please everyone so you need to please yourself first or you won’t be able to please others.

What advice would I give someone recently diagnosed… 

Be your own best advocate! Be involved. Learn about the disease

My support system is…

I would not be anywhere without my wife Diana and my daughter Savannah who is 15 going on 30. They have been there for me physically, emotionally and most important mentally. 3 years ago I thought about committing suicide due to the pain. I would have done it if it wasn’t for my wife and daughter. I ended up putting myself in a 72-hour hospital watch for suicide prevention.

If I had one day symptom/disability-free I would… 

I would go away with my family to the beach. That is my favourite place but now since I have Sarcoidosis I haven’t been able to go that much at all.

One positive of having a chronic illness/disability is…

There are actually two positive things that have come from having these diseases. The first is the friends I have met that have the same diseases as I do. They understand what I am going through and I can talk to them about it. The most important positive for me is I knew I was strong, but I never knew how strong I was until I have been with this disease. I have fought through things I never would have thought I could. My motto is ” I have Sarcoidosis and Parkinson’s but THEY don’t have me!”

My links are:

www.sarcoidosisofli.org

https://wordpress.com/view/lifeasararepatient.blog

 

Interview October – Maya

Today on Interview October, we’re meeting Maya Northen Augelli . Let’s get to know her better:

MayaNorthenAugelli

Introduce yourself and tell us a bit about you…  

My name is Maya and I’m from Philadelphia, where I live with my husband and our dog. I run a travel planning company, and also work with a local consulting company. I became a mental health and chronic illness advocate in 2009, after being diagnosed with a relatively rare mood cycling disorder. When I’m not working or advocating, you can often find me traveling, hiking or otherwise enjoying nature, reading, writing, or doing yoga – in fact, I’m just starting Yoga Teacher Training this fall!

Chronic illness(es)/disabilities I have… 

I have Rapid Cycling Cyclothymia, a rare mood cycling disorder that’s similar to, but technically “less mild” (in quotes because it definitely doesn’t feel mild at times) to Bipolar Disorder. I also struggle with anxiety as part of this disorder, though not technically diagnosed with a separate anxiety disorder. In addition to my mental health condition, I  battle IBS and Migraines

My symptoms/condition began… 

I am told I was most likely born with cyclothymia. I started exhibiting symptoms of hypomania as early as two years old, though of course they didn’t know what it was at the time. Symptoms progressively increased in frequency and intensity through my teen and early adult years. I was finally diagnosed just shy of my 30th birthday. The migraines I have been getting since I was a teenager – tough to really say when they started, but I can definitively say I can’t really recall a time when I wasn’t prone to migraines. They’re not continual, but I have consistently gotten them at least a few times a month since I was a teen. The IBS symptoms began around the age of 23, and I was diagnosed shortly thereafter.

My diagnosis process was… 

I’ll speak mainly about my cyclothymia diagnosis process here, as they others were pretty straight forward – went to the Dr, was referred to a specialist, had a couple of tests (colonoscopy/upper & lower GI tests for the IBS) and was diagnosed.

The cyclothymia diagnosis was trickier. I’d been seeing therapists on and off since college. I had only found one I’d really trusted, but long story short, at the time my symptoms weren’t as prominent, and I was more seeing her post-divorce than for my specific mental health symptoms. In the summer of 2009, my GP put me on a low dose of antidepressants, which at first helped, but soon made me feel worse. In August 2009, I was hospitalized for two days with what I thought were non-stop anxiety attacks. The hospital increased my depression medication, and I felt worse. When I got out of the hospital, I went to the one therapist I’d trusted from past years, and we began working through things – including the fact that the medication was making me worse. I even brought my mom to a session, in which she described the symptoms I’d exhibited as a very young child (since I couldn’t quite as accurately describe them, having been a toddler when they started). It was during these visits that I was finally diagnosed with rapid cycling cyclothymia. My therapist explained that the antidepressants made me worse because I cycle so rapidly that basically, by the time the medication that’s supposed to “lift” my mood (for lack of a better phrase) hits my system, I’ve already cycled up, and the effect is compounded. So in essence, the antidepressants were putting me in almost continual hypomania (what I had thought were anxiety attacks). She subsequently brought me down off the antidepressants and we began mood stabilizers.

The hardest part of living with my illness/disabilities is… 

It’s two fold for me. One is the feeling of lack of control over my brain. I feel like I often can’t trust my own mind – because I cycle so quickly, literally every day is a complete surprise. I never know how I’ll wake up feeling (depressed, hypomanic, anxious, none of the above), and how often it’ll change each day. Not being able to trust my own brain, or feeling like I can’t, massively affects my self-esteem and often makes me feel hopeless and worthless.

The second is the stigma. The fact that people think you can just smile, change your attitude, be more grateful, look on the bright side, or choose to not feel this way is awful. When this happens, not only do I feel hopeless and worthless, I’m being told it’s my own fault, and shamed for how I’m feeling.

A typical day for me involves… 

I have a full time job, so on weekdays, my day of course involves that. But in terms of illness and coping strategies, I get up early to exercise most weekdays before work – it helps my mood, and it helps me to keep a consistent schedule. I spend time writing each morning – mostly journaling. This helps me brain dump, more or less, so that I can try to sort through the mish-mosh of feelings, emotions, thoughts all going through my brain. Without this outlet, it feels like non-stop stimulation inside of my brain, before even getting much input from the “outside” world, and it makes concentration and focus extremely difficult. Most evenings after dinner, I try to meditate, and/or do some yoga. It’s a wind down for my day, and helps settle my brain, so that I can hopefully get some sleep. If it’s not a work day, I try to spend as much time in the sunshine and fresh air as I can – especially in nature. I’ve been slacking in that lately, and really need to get back into it.

The one thing I cannot live without is… 

My loved ones. They’re my rocks. But if I had to choose an actual thing… I’d be tempted to say my medication, but I’ve had to go temporarily off of it for personal reasons, so technically, I’m living without it for the moment.  So, I’d probably have to say my journal. Writing is my solace. My journal will “listen” to my thoughts and emotions and feelings with no judgement, and it lets me get it “out of my head” without having to actually direct it at anyone, which is huge in helping my relationships with loved ones and friends (note: I’m far from perfect in this regard, but it helps). I work through so much in the pages of my journal, and I can’t imagine not having that outlet on a daily basis.

Being ill/disabled has taught me… 

That I am not alone, and that so many people struggle with their mental health. You hear the statistics, that one in five Americans have a mental health condition, but when you begin talking about your illness and advocating, and you have people you would never have thought coming to you and saying, “Thank you so much for speaking out, I struggle too,” it really hits home. That “one in five” goes from being a statistic to something tangible that you can feel in daily life.  My illness has also given me a purpose. In my adult life, I feel I’ve floundered a bit in really finding where I feel I belong. But utilizing my illness to help others has, from the very start, always felt 100 percent like it’s my purpose and a path that I have to follow. It feels such a natural part of my life, almost an extension of myself, when so little else does sometimes.

What advice would I give someone recently diagnosed… 

I have so much to say here, but I’ll try to condense it!  First, I would tell them to learn everything they can about their illness (from credible sources of course), and that when they’re ready, finding support with others who have the same/similar illness  – whether they find this in an official group or among friends or on social media/online – can make a world of difference. I’d also remind them how often depression and anxiety lie, and that there may be days that their illness wants them to believe every terrible thing about themselves, but that these aren’t true, no matter how convincing the lies sound.  I’d want them to know that there’s hope, there are others who “get it” and are here to help, and that they are not alone. Finally, I’d tell them to make sure that they have a healthcare team that they trust, and just as importantly, that trusts them. We know our bodies and our brains better than anyone else because we have lived with them our entire lives, and it’s important that our health professionals understand this – we deserve that respect as patients, to have our voices heard and not to be discounted.

My support system is…

My husband, my family, my friends, my therapist, my social media/online spoonie family.

If I had one day symptom/disability-free I would… 

Live as fully as I could – do activities I love to do, with people I care about, and try my hardest not to, as so often happens, let the anxiety of “Ok, I feel good now, but when is the proverbial other shoe going to drop”  creep in. Afterall, if I let it creep in, I’d cease to be symptom free!

One positive of having a chronic illness/disability is…

For myself, I’d say that it’s helped me to be more understanding and empathetic. Because I know I’m often struggling with a lot that others can’t see, I try to also remember this when the situation is reversed, and I try to put myself in their shoes before passing judgement. For instance, if someone’s speaking to me badly, I try to ask myself “what might they be going through that I can’t see that’s causing them to act this way?”.

In addition, as mentioned above, it’s given me a purpose and direction. Without my illnesses, I wouldn’t be an advocate, I wouldn’t be involved in so many various organizations and causes, and I wouldn’t have met so many amazing people through these.

My links are:

https://spreadhopeproject.com
www.liliesandelephants.blogspot.com
Twitter: @mayanorthen
Instagram: @myohmy23

Interview October – Jan

Interview October is almost over, but we have another guest to meet – Jan Collins

JanCollins

Introduce yourself and tell us a bit about you…  

I am Janet but prefer Jan and I am 60 years young. Recently divorced after 37 years of marriage I have 2 children, Zoe 35 and Nathan 26. Zoe has my only granddaughter Amerthyst who will be 7 in November and she is the light of my life

Chronic illness(es)/disabilities I have… 

I have among other things chronic brittle asthma, COPD, type 2 diabetes, osteoarthritis and the onset of osteoporosis in my left hip. For 15 years I was on steroids for my asthma which has caused me all sorts of digestive problems. I am pleased to say that I have recently come off the steroids and have already lost over a stone (14lbs) in weight

My symptoms/condition began… 

I have had asthma all my life, when I was 4 my parents were told it was infantile asthma and I would grow out of it. In the interim, I have had bad spells and good spells. About 16 or 17 years ago I collapsed at home and if it hadn’t been for my then 9 year old son who didn’t panic but kept his calm I could have died. For the next 6 months or more I was in and out of A and E, my mum and husband were on the phone every day trying to get me to see a specialist. We were told that as mine was asthma, not lung cancer I didn’t have priority. When I did see the specialist he put me on steroids and boy did that open a can of worms. Every time they found something else wrong it was due to the steroids. I put on loads of weight and lost all my self-esteem.

The hardest part of living with my illness/disabilities is… 

The worst point was being diagnosed with diabetes 3 years ago which restricted my already limited diet even more. My ex also has diabetes and could eat almost anything without it causing any problems. I quickly learnt I couldn’t and was put on insulin developed fat growths on my arm and in my eye and had problems with my feet. It was so frustrating, I lost my self-confidence and my controlling ex basically persuaded me I couldn’t do anything so I became housebound except when he took me out. Then he walked out, my son helped me do a food diary to work out what I could or couldn’t eat, yes it was limiting but at least I knew where I stood. I discovered an inner strength and regained some of my self-confidence. A haircut and losing weight with people telling me how good I looked did a lot for my self-esteem as well.

A typical day for me involves… 

At the moment a typical day for me starts when my alarm goes off at 5am. This gives me three-quarter’s of an hour to get up and get dressed before I wake my son. After the first of many cups of tea the dog and I go for an OK let’s get our bodies moving walk, we both suffer from arthritis. This is the first of at least 3 walks we do. Then it’s medicine time which can take up to an hour. 2 mornings a week the community transport bus picks me up from home and takes me into town (I can no longer drive due to my eye problems). My daughter comes over once a week and we go out for a coffee. Afternoons are given over to crafting and studying, I am doing an O. U. English literature and creative writing degree. After a late tea and my second lot of insulin and, my 3rd lots of nebules I do my son’s lunch box for the next day before sitting down for the evening. I usually catch up on social media and deal with anything that has cropped up, write to my numerous pen pals or read. Every day my intention is to be in bed by 10 but it rarely happens. For one thing, my evening routine of medicines, putting cream on my feet etc takes over an hour.

Being ill/disabled has taught me… 

Over the years I have adapted my lifestyle to suit my needs but despite what it sounds like my health doesn’t dominate my life I always say I am not disabled just less enabled in some fields but have learnt so many new things to more than compensate for those things. People feel sorry for me but I can’t understand why I have so much going for me and have learnt so much. These days I can’t imagine living without my health issues but that aside my Jack Russell Terrier Herbie is my lifeline, he is company, he gives me a reason to get up and walk him and thus exercise. As a result of watching my diet changes and walking Herbie, I have lost over a stone (14lbs) in weight. I am still overweight but every bit helps.

What advice would I give someone recently diagnosed… 

Pace yourself, set targets for yourself but don’t knock yourself up if you don’t achieve them.

One positive of having a chronic illness/disability is…

Being disabled has taught me so much it is difficult to remember them all. Tolerance, patience, understanding, empathy, compassion, I have become a better listener and learnt many new skills all as a direct result of my health problems

 To quote 2 sayings my grandad used to say

” count your blessings one by one every day.” These might be anything from the love of your family and friends, sunny days or just the fact that you are still breathing.

” Smile and the world smiles with you, cry and you cry alone”. People get fed up with you if you are always moaning.

Life is for living, enjoy.

My links are:

collinsjan20@gmail.com and people can private message me anytime.

Other than that I am a member of Disability Matters and I am an ambassador for the online group Carenity.com specialising in Respiratory Diseases, Chronic Pain, Depression and Diabetes.

Interview October – Beth

Interview October continues with another wonderful guest…let’s meet Beth Crutcher

BethCrutcher

Introduce yourself and tell us a bit about you…  

My name is Beth…I am a 52 yo, Married, mother of 2, Full time Registered Dental Assistant. I’ve been in the same dental office since 1995.

Chronic illness(es)/disabilities I have… 

I have Chronic Congestive Heart Failure, My Ejection Fraction, or how the blood pumps through the heart currently sits at 35- 40%, normal is 55-70%. I also have been diagnosed with Postural Orthostatic Tachycardia Syndrome and Mixed Connective Tissue Disorder.

My symptoms/condition began… 

My symptoms first began with the birth of my first child in 1988, I was 21 years old and had an uneventful pregnancy, but soon after the birth of my daughter I noticed I could not take in a deep breath, and felt a heaviness on my chest. Since I had just had an emergency c-section, doctors overlooked any concerns as normal pregnancy symptoms. When I persisted they finally saw me and realized I was in distress as my oxygen levels were in the 70’s. I was sent to the ER and treated for pulmonary embolism, pneumonia, asthma, and even anxiety. I was away from my newborn for two weeks and discharged without a proper diagnosis. That of which I would not get until the birth of my second daughter 13 years later in 2001 and in post-pregnancy had shortness of breath, and swelling, and could not lie flat. after two weeks of medical professionals saying it was normal..an ER Cardiologist gave me a diagnosis of PeriPartum Cardiomyopathy. Pregnancy-induced heart failure,

My Ejection Fraction was at 10%  and I may get better with medications, or I may need a heart transplant.  I have been on an up and down EF rollercoaster of treatments and medications and am currently stable with an EF of 35-40%.  Still very symptomatic and having other symptoms of  extreme fatigue, lightheadedness, brain fog,  excessive heart palpitations, exercise intolerance, nausea, severe headaches, aura migraines, joint pain , stomach pain, sun/heat exposure intolerance, dizziness, high and low blood pressure readings led to having a positive tilt table test and a diagnosis of Postural Orthostatic Tachycardia Syndrome (POTS), an autonomic dysfunction, Dysautonomia. and blood work revealed a high ANA reading which gave me a diagnosis of Mixed Connective Tissue Disease, an autoimmune disorder.  All aspects of each illness has its challenges and it is often hard to balance one against the other.

The hardest part of living with my illness/disabilities is… 

An unpleasant aspect of HF and POTS and MCTD, for me, is doing a task that involves squatting down (rather than bending from the waist, which makes me feel faint on standing upright). Getting something from the bottom of the shelf, or reaching and stretching in a continuous motion, walking up a flight of stairs, as well as taking the elevator leaves me very short of breath, or dizzy. I ask why this happens and they said it’s a bit like standing on a garden hose – squatting down like that with an inefficient heart restricts the return of blood to the right side of the heart through the vena cava, consequently there is less to go to the lungs for oxygen before being pumped around the body by the dysfunctional left side of the heart. I also don’t like the pain in my joints, it can make the smallest of tasks unbearable.

A typical day for me involves… 

First getting out of bed in the morning is slow moving.  I have learned to move carefully. I only have so much energy to use in a day. Monday-Friday I work full time in a busy dental office. I have learned my limits and go through life accordingly. When I’m in a flare-up, I rest. I do activities/ family functions when I feel up to it, when I feel I can’t… I don’t.

The one thing I cannot live without is… 

My Husband and children and soon to be granddaughter!

Being ill/disabled has taught me… 

You know who your real friends are. The ones that understand you may not be capable of doing what you once did, but support you when you can or can’t.

What advice would I give someone recently diagnosed… 

Trust yourself. Keep telling yourself, You’re not unreliable, Your health is. It’s not your fault

My support system is…

My family and friends and work family. And social media groups.

If I had one day symptom/disability-free I would… 

I would with all my loved ones around me, run down the beach, climb a mountain to look at the view down below. And just take in the sunshine and eat whatever I want!!!

One positive of having a chronic illness/disability is…

The connections I have made through social media and becoming an advocate for PPCM with SavetheMommies.com. My Heartsisters are like my family.

My links are:

SavetheMommies.com

Interview October – Maria

It’s time to meet our next Guest for Interview October. This is Maria Thomas

MariaThomas
photo credit: Amy Boyle Photography

Introduce yourself and tell us a bit about you…  

My name is Maria Thomas, and I’m a writer, editor, content creator and book nerd. Seven years ago I launched my blog, My Life as a Puddle, where I’m creating hyperhidrosis hope and awareness one drop at a time.

Chronic illness(es)/disabilities I have… 

Hyperhidrosis (excessive uncontrollable sweating), ulcerative colitis and Hashimoto’s thyroiditis

My symptoms/condition began… 

Hyperhidrosis- age 7

UC – age 33

Hashimoto’s – age 36, and I found out by accident after some bloodwork!

My diagnosis process was… 

A long time coming for my Hh. I found the term in a Google search but didn’t get a proper diagnosis until age 21.

UC – the perfect storm. I was going through a divorce, selling the first home I ever owned, and moving into a tiny little apartment. It was a trifecta of stressful events and my body decided to respond with blood in my stool and a frequent need to go.

The hardest part of living with my illness/disabilities is… 

Hh – Getting people to understand that I am not sweating because I am nervous. I’m nervous BECAUSE I’m sweating. There’s a difference. It’s also hard for people to understand how much my life and choices are affected by my sweating. It’s not “just a little sweat.” I try not to let it rule my life but sometimes it does.

UC – having a chronic autoimmune condition makes me tired sometimes, and more prone to GI pain and distress. I’m not high maintenance, but I’ve really had to overhaul the way I eat, which can make it difficult to eat out sometimes. I now follow a Paleo nutrition plan, which is hard when you live in a state known for its craft beer, which is unfortunately loaded with gluten.

I also have to stab myself every other week with a biologic injectable medication. Try that with sweaty hands!

A typical day for me involves… 

Turning my desk fan on and off at least 25 times a day while at work, then coming home and changing my sweaty clothes and socks if necessary. If I’ve worn sandals, I’ll usually wash my feet since they’ve developed a coating from sweating.

UC-wise I never know when I’ll experience symptoms. I’m in remission now, but occasionally I’ll have gurgling sounds and stabbing pains in my lower abdomen.

Hashimoto’s-wise, sometimes I feel so lethargic it’s like i haven’t slept in days. Other days I feel like I could run a marathon.

The one thing I cannot live without is… 

My books, my husband, and my Pug named Maya

Being ill/disabled has taught me… 

To listen to my body and take care of it. I was hospitalized once because of my ulcerative colitis. It was scary and miserable and terribly isolating. It also taught me to be my own best health advocate. I had nurses trying to feed me grains and gluten and dairy. Not once did my GI doctor at the time say gee, you might want to avoid all that stuff. I had to seek out a functional medicine doctor to learn all of that and switch to a Paleo diet.

What advice would I give someone recently diagnosed… 

Do your research! Read the medical literature, read books, and absolutely go see a functional medicine Doctor who treats the whole body as a system and doesn’t just prescribe medications to cover up symptoms.

My support system is…

My husband and my family

If I had one day symptom/disability-free I would… 

Go on a public speaking tour and wear high heels without no-show socks or absorbent insoles because I wouldn’t be worried about sweating all over everything ! Then I’d do a meet and greet and shake everyone’s hand.

One positive of having a chronic illness/disability is…

I get to choose how I respond to my life, which is why I choose to make my sweaty mess my message. You can either rise up or stay below. All it takes is one different choice.

My links are:

https://www.facebook.com/mylifeasapuddle/
https://twitter.com/MyLifeAsAPuddle
https://www.instagram.com/mylifeasapuddle/

Interview October – Roger

Let’s meet Roger Potter, our next guest on Interview October. Here he is:

Rog Potter

Introduce yourself and tell us a bit about you…  

My name is Roger Potter, a young strong Senior who is one of the original blue babies of the 1940’s, born also with congenital heart disease and one of the pioneering babies that had open heart surgery in 1952. I am also one of 20 co-authors of a up coming book called Cardiac Athletes vol 2.

Chronic illness(es)/disabilities I have… 

I was born a Blue Baby – this means that you’re born with a pale bluish color to your skin which means that you are still mixing oxygen and blood when you’re not supposed to be which indicates you also have congenital heart disease.

My symptoms/condition began… 

My symptoms began at birth and the diagnosis was at 6 months of age.

The hardest part of living with my illness/disabilities is… 

The hardest part as a child was not being able to keep up with the other kids and getting tired very fast.  Now as an adult, it’s accepting the fact that there are things I can’t do or doing them differently.

A typical day for me involves… 

Being active, living as full a life as I can and getting in the gym on a regular basis, for this condition is not going to stop me – I will capitalize on it.

One thing I can’t live without is…

The one thing I can’t live without is activity and going to the gym for this malady will not defeat me.

Being ill/disabled has taught me… 

Feeling or being disabled has taught me how to live boldly and be able to conquer that which I can and let others do that which I can’t.

What advice would I give someone recently diagnosed… 

I would tell those that are recently diagnosed to find out all that you can about what you have and talk with your Doctor at great lengths about exactly what you have then find out what your restrictions are like I did – and then find out if there is a way that you can accomplish at least some of your goals safely.

My support system is…

My support system is in part myself, for I seek to challenge myself on a safe basis and with Facebook Cardiac Athletes when I can motivate those that are going through problems that I had many years ago.

If I had one day symptom/disability-free I would… 

If I had one day free of all and knew that it wouldn’t bother me, I would max the day out. One positive of having a disability is knowing you’re a survivor and in an exclusive club and being able to do things that you weren’t supposed to be able to do.

My links are:

http://www.openheartsurgerytoseniorstrength.com/

https://twitter.com/SeniorPower

Interview October – Jenni

Our Interview October series continues with our next guest, Jenni Lock. Let’s meet her now:

JenniLock

Introduce yourself and tell us a bit about you…  

My name is Jenni Lock.  I’m 43 years old and hail from Ohio. I created Jenni’s Guts blog in 2008 and write about my journey with intestinal nonsense and other health issues.  My sense of humor and sarcasm are all part of my charm. I have a deep love for animals, learning about everything, socializing from a far, and my beautiful daughter.

Chronic illness(es)/disabilities I have… 

Crohn’s disease, Irritable Bowel Syndrome, Bile Acid Malabsorption, chronic nausea and diarrhea mainly. However, I also suffer from Fibromyalgia, Anxiety, Depression, Insomnia and struggle with a touch of PTSD.

My symptoms/condition began… 

I started having health problems in roughly 1990, though I wasn’t officially diagnosed with Crohn’s until 1995.  Everything else wrong with me just snowballed over the years after that.

My diagnosis process was… 

Difficult. I suffered from a lot of stomach pain, back pain, joint pain and lost about 15 pounds due to running to the restroom about 15-20 times a day. My family doctor told me I was depressed and needed Prozac. That didn’t help so I went to a specialist. The specialist told me I had Irritable Bowel Syndrome and needed to eat more fiber and scheduled me for a sigmoidoscopy, but everything came back normal so I was, again, told to eat more fiber and decrease my stress. I quickly found out fiber made things worse and I continued to get sicker and sicker. I went to a different specialist who did many more tests but everything came back normal except for one blood test. It showed an inflammation/infection rate of seven times the normal rate. I exhausted all the testing options so I was scheduled for surgery to figure out what was happening inside me.  During surgery they found I had about 3 1/2 feet of severely inflamed small intestine and the final diagnosis was Crohn’s disease.  The whole diagnosis process took about 2 years.

The hardest part of living with my illness/disabilities is… 

My inability to do things with my family and friends because of being tied to a restroom and not feeling well enough.  Especially not being able to travel and go to fun events.  I’m not able to do a lot of things with my daughter because of this and it is really hard for me to continually have to say, “No, I’m sorry but I’m too sick” or “I can’t because of the bathroom situation.”

A typical day for me involves… 

After an exhausting night of not sleeping well, or even at all, the mornings are usually met with many trips to the restroom which continues throughout the day but most of the time tapers off at least a little throughout the day.  I watch a lot of movies and television, read and research, or put on music and draw.  I’m unable to work so I mainly just try to keep myself from going stir crazy.

The one thing I cannot live without is… 

Laughter.

Being ill/disabled has taught me… 

I can be a person with a disability (or many actually) but it doesn’t define who I am.  I’m so much more than just someone with medical problems.  And it has taken struggling with so many things wrong with me to actually figure that out.

What advice would I give someone recently diagnosed… 

This diagnosis isn’t the end of you. Study and learn as much as you can about your illness from every source you can get your hands on (except WebMD!!).  You have an inner strength that you never knew you had so use it to fight for proper health care and proper treatments and don’t ever, EVER settle for less – not from your doctors, healthcare professionals, or anyone else.  You’re worth it!

My support system is…

My family and friends.  And a furry little friend or two always make things better!  (Shoutout to all the pets I have had along the way – I miss you guys!)

If I had one day symptom/disability-free I would… 

Grab my daughter, get in the car and just drive.  We would go to all the places she always wanted to go and do all the things she wanted to do that I couldn’t because traveling, for me, is so difficult.

One positive of having a chronic illness/disability is…

All the communities out there that have allowed me the opportunity to meet people and learn about their stories.  I’m so fortunate that my blog has reached so many people and we all get to help each other cope.  I think it is so important to have a community of people who understand, even if they are hundreds of miles away from you and you never physically meet each other.

My link is:

JennisGuts.blogspot.com