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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25 Inspirational Quotes

From time to time, I like to share quotes that I think are beautiful, to help inspire my readers or just make you think. Here are 25 of the most inspirational quotes I’ve found lately to share with you today. 

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  1. Our deepest fear is not that we are inadequate. Our deepest fear is that we are powerful beyond measure. It is our light, not our darkness that most frightens us. We ask ourselves, ‘Who am I to be brilliant, gorgeous, talented, fabulous?’ Actually, who are you not to be?
    Marianne Williamson.
  2. Most of the important things in the world have been accomplished by people who have kept on trying when there seemed to be no hope at all.
    Dale Carnegie.
  3. Anyone can give up; it’s the easiest thing in the world to do. But to hold it together when everyone would expect you to fall apart, that’s true strength.
    Chris Bradford.
  4. Life is full of screwups. You’re supposed to fail sometimes. It’s a required part of the human existence.
    Sarah Dessen.
  5. Hard times don’t create heroes. It is during the hard times when the hero within us is revealed.
    Bob Riley.4
  6. When you have exhausted all possibilities, remember this: you haven’t.
    Thomas A. Edison.
  7. You can play it safe, and I wouldn’t blame you for it. You can continue as you’ve been doing, and you’ll survive, but is that what you want? Is that enough?
    J.M. Darhower.
  8. Fairy tales are more than true: not because they tell us that dragons exist, but because they tell us that dragons can be beaten.
    Neil Gaiman.
  9. Far away there in the sunshine are my highest aspirations. I may not reach them, but I can look up and see their beauty, believe in them, and try to follow where they lead.
    Louisa May.
  10. Be grateful for what you already have while you pursue your goals.
    If you aren’t grateful for what you already have, what makes you think you would be happy with more.
    Roy T. Bennett.5
  11. It’s not about perfect. It’s about effort. And when you bring that effort every single day, that’s where transformation happens. That’s how change occurs.
    Jillian Michaels.
  12. Reach high, for stars lie hidden in you. Dream deep, for every dream precedes the goal.
    Rabindranath Tagore.
  13. Limitations live only in our minds. But if we use our imaginations, our possibilities become limitless.
    Jamie Paolinetti.
  14. When you get into a tight place and everything goes against you, till it seems as though you could not hang on a minute longer, never give up then, for that is just the place and time that the tide will turn.
    Harriet Beecher Stowe.
  15. You may be the only person left who believes in you, but it’s enough. It takes just one star to pierce a universe of darkness. Never give up.
    Richelle E. Goodrich.7
  16. You never know what’s around the corner. It could be everything. Or it could be nothing. You keep putting one foot in front of the other, and then one day you look back and you’ve climbed a mountain.
    Tom Hiddleston.
  17. If one dream should fall and break into a thousand pieces, never be afraid to pick one of those pieces up and begin again.
    Flavia Weedn.
  18. Just because you fail once, doesn’t mean you’re gonna fail at everything. Keep trying, hold on, and always, always, always believe in yourself, because if you don’t, then who will? So keep your head high, keep your chin up, and most importantly, keep smiling, because life’s a beautiful thing and there’s so much to smile about.
    Marilyn Monroe.
  19. Don’t let something make you miserable if you can do something about it. If that’s what makes you happy, go for it.
    Kate Brauning.
  20. A boat is always safe in the harbor, but that’s not what boats are built for.
    Katie Couric.
  21. Twenty years from now you will be more disappointed by the things that you didn’t do than by the ones you did do. So throw off the bowlines. Sail away from the safe harbor. Catch the trade winds in your sails. Explore. Dream. Discover.
    Mark Twain.
  22. Your complaints, your drama, your victim mentality, your whining, your blaming, and all of your excuses have NEVER gotten you even a single step closer to your goals or dreams. Let go of your nonsense. Let go of the delusion that you DESERVE better and go EARN it!
    Steve Maraboli.
  23. I don’t believe in failure, because simply by saying you’ve failed, you’ve admitted you attempted. And anyone who attempts is not a failure. Those who truly fail in my eyes are the ones who never try at all. The ones who sit on the couch and whine and moan and wait for the world to change for them.
    Sarah Dessen.
  24. Even the darkest night will end and the sun will rise.
    Unknown.
  25. Every great dream begins with a dreamer. Always remember, you have within you the strength, the patience, and the passion to reach for the stars to change the world.
    Harriet Tubman.6


there is always hope

 

 

20 Quotes To Reduce Stress When You Have An Invisible Illness

Having Fibromyalgia, or any Invisible Illness is hard to live with. People can’t see your pain like they can with other conditions, and we often have to put up with the platitudes of “but you don’t look sick”, or “oh, I get aches and pains all the time too”. Hearing these comments over and over can lead to depression, frustration and resentment. Stress builds and makes you hurt even more, and so a vicious circle begins. 

It’s time to read something more positive, words that you can cling to and keep close at heart. These quotes are from a variety of different people who seem to have a handle on anxiety and stress. I hope their words help you. Thanks to Live Purposefully Now for the list:

Ocean with giant rock and the words Stress Free Zone

Quotes

1. Anxiety’s like a rocking chair. It gives you something to do, but it doesn’t get you very far. Jodi Picoult

2. You don’t have to control your thoughts. You just have to stop letting them control you. Dan Millman

3. Anxiety does not empty tomorrow of its sorrows, but only empties today of its strength. Charles Spurgeon

4. I promise you nothing is as chaotic as it seems. Nothing is worth diminishing your health. Nothing is worth poisoning yourself into stress, anxiety, and fear.  Steve Maraboli

5. You can’t always control what goes on outside. But you can always control what goes on inside. Wayne Dyer

6. When you change the way you look at life you literally shape a different life for yourself. Elle Sommer

7. I just give myself permission to suck. I find this hugely liberating. John Green

8. Stress is an ignorant state. It believes everything is an emergency. Natalie Goldberg

9. Don’t try to force anything. Let life be a deep let-go. God opens millions of flowers every day without forcing their buds. Osho

10. Breath is the power behind all things…. I breathe in and know that good things will happen. Tao Porchon-Lynch

11. You must learn to let go. Release the stress. You were never in control anyway. Steve Maraboli 

12. If the problem can be solved why worry? If the problem cannot be solved worrying will do you no good.  Shantideva

13. The key to reducing anxiety is to let each situation be what it is, instead of what you think it should be. Elle Sommer

14. One of the symptoms of an approaching nervous breakdown is the belief that one’s work is terribly important. Bertrand Russell

15. Many a calm river begins as a turbulent waterfall, yet none hurtles and foams all the way to the sea. Mikhail Lermontov

16. The greatest weapon against stress is our ability to choose one thought over another. William James

17. Stress is the trash of modern life we all generate it but if you don’t dispose of it properly, it will pile up and overtake your life. Danzae Pace

18. Rule number one is, don’t sweat the small stuff. Rule number two is, it’s all small stuff.  Robert Eliot

19. Today I refuse to stress myself out about things I cannot control or change. Anonymous

20. If you are distressed by anything external, the pain is not due to the thing itself but to your own estimate of it; and this you have the power to revoke at any moment. Marcus Aurelius

Living A Stress-Free Life

Stress-Free

Re-examine Your Values

Or examine them for the first time. Your values will always make it clear to you what you want in life.

Once you are clear on your values, you can begin to identify the things you could do away with. Those things will probably be your stressors, so this tip helps to clear your mind and prepare for the changes ahead.

Forgive Yourself

You can’t begin to live stress-free if you can’t forgive yourself. If there are issues from your past you haven’t dealt with, you are likely to be filled with stress over them. Living with regrets is also stressful. 

Life is meant to be enjoyed. And it’s a journey, not a destination. Just because you took a detour to the wrong side doesn’t mean you can’t find your way back to the right path. Work toward becoming a better person. Let your mistakes be life lessons. Everyone makes mistakes, remember that. And put the past in the past where it belongs.

Forgive Others

This goes hand in hand with forgiving yourself. Just as it’s important to forgive yourself, it’s equally important that you forgive others for the wrongs they’ve done to you.

Others are just as worthy of forgiveness as you are. Forgiving others frees you more than it frees them and the extra baggage you’ve been carrying around is liberating to let go of as well. 

Accept Your Life Just The Way It Is

No one is promised a perfect life. Though we all strive to achieve happiness and contentment in our lives, it doesn’t always turn out that way. The key to acceptance is to accept it just the way it is. Accepting it doesn’t mean settling in it. It means consciously acknowledging it instead of running away from it in denial.

Whatever your life circumstances, accept them. Only when you accept your life circumstances can you begin to take steps to improve them. This will definitely help you to live stress-free.

Think The Best Of Every Situation

Whatever the situation is that you’re going through, be it divorce, disease, failing at school, getting fired from work, etc., you can still find some good in it. I know that sounds simplistic, but there are always reasons to be grateful as long as you don’t play the victim and accept the circumstances for what they are. 

You still have the power to change things. That power is what leads to a stress-free life. Acceptance can be liberating. 

Be Present In Everything You Do

It’s easy to be preoccupied with other things while we are doing one thing, and this elevates stress. If you are washing dishes, but now you are worried about paying the bills and the kids’ tuition, and the mortgage, then stress is bound to overwhelm you.

Instead, learn to be present in what you are doing. You can teach yourself to think of only washing the dishes. You can compartmentalize everything so that you don’t let your stressors dominate all your time. This way you don’t let stress prevent you from being productive. 

Declutter Your Life

And do this in every way imaginable if you want to live stress-free. People have a lot of stress because they have a lot of material, mental, emotional, financial, intellectual and social clutter. If only they could declutter their lives.

You don’t need all those other things outside of your basic needs. Stop hoarding stuff because managing it means stress. Simplify your life in the best possible way.

Be Grateful

Don’t underestimate the significance of gratitude if you want to live stress-free. Most people can’t get out of stress because instead of being grateful for the good things in their lives, they are busy whining about the bad things in their lives.

Sometimes they whine even about the good things because they’ve become blind to how lucky they are. If you are like that, it’s time to change. Gratitude is the best antidote for stress, so take a spoonful and live stress-free.

10 Things I’ve Learned About Chronic Pain

If you’ve read my blog before, you know that I live with Chronic Pain and Chronic Fatigue. My pain comes from Fibromyalgia, Osteoarthritis in all my major joints, Myofascial Pain, a condition called Trigeminal Neuralgia, Diabetes (and Neuropathy that comes from that), Pelvic Adhesions, a spinal condition called Forestier’s Disease, aka D.I.S.H. which stands for Diffuse Idiopathic Skeletal Hyperostosis, Gastroparesis and several other medical conditions.

The author showing various pictures of her face in pain

My many faces of pain

I’ve been living with Chronic pain for over 30 years now, from the time I was a teen, and I’ve learned a few things in those years. I’d like to share 10 of those things with you now.

1. THERE IS ALWAYS HOPE

No matter how long I’ve been in pain for, I’ve never given up hope that things are going to get better. Some days I have are pure agony. Some days are pure delight. I cling to the good days as a reminder that things can be better and often are. There is always hope.

2. A GOOD DOCTOR IS TO BE TREASURED

Doctors have a hard time treating patients with chronic pain because they haven’t been trained well. They’re trained to diagnose a problem and solve it, so chronic pain is frustrating for them as well. If you don’t have a sympathetic doctor who is doing everything they can for you, find another doctor. When you do find one, be honest with them. Share everything…your depression, your anger, your worries. A good doctor wants to help you, but if you can’t share with them, you’re not giving them the chance to do all they can.

3. SUPPORT GROUPS AREN’T RIGHT FOR EVERYONE

Some people thrive in a support group. Others tend to get tired of the constant back patting and “Oh my gawd, I’m so sorry” conversations. Some are in the middle. I think a support group can be a great thing, as long as it’s the right fit. You want a group where you can feel heard and valued while offering support to the others as well – not just a one-way street. I also think it’s important to not jump into every group you hear about. That just becomes confusing and almost like a competition, to see how much sympathy you can drum up. You have to be willing to give back and you can’t forge honest relationships with people when you’re in a dozen active groups in my opinion. Unless that’s all you do all day long. And if that’s the case, I feel sorry for you, because you’re obviously not getting something you truly need.

4. CHRONIC PAIN IS ALMOST IMPOSSIBLE TO EXPLAIN TO OTHERS

Despite having great tools like the Spoon Theory and the Battery Analogy to talk about how much energy it costs us to live with chronic pain, it’s almost impossible to get others to understand what it’s like to live with chronic pain day in and day out. Here’s the thing…THE PAIN NEVER GOES AWAY. I can’t make it any more clear than that. No matter what I’m doing, or not doing. I’m hurting. Sometimes I’m in agony, like when I get a Trigeminal Neuralgia Flare up. Try to imagine the last time you experienced brain freeze from eating/drinking something cold…do you remember that sensation? That agonizing pierce of pain in your brain?  Now try to imagine that same feeling but in your cheekbone…for 12 hours in a row. Can’t imagine it?? Go try and get brain freeze as a reminder. That’s what my TN flare-ups are like. They start in my cheekbone and spread to my sinus cavity and my eye, then down to my jaw, and to my esophagus. I get spasms in my throat and often I get chest pain as well. For 12 hours.

My Fibromyalgia pain feels like my limbs are in concrete…it’s a heavy throbbing sensation in my arms and legs that make them impossible to move. The Neuropathy I feel in my feet is like pins and needles that never go away. My back pain is so intolerable that I can’t sweep my floors for more than 5 minutes without my lower spine seizing up.

5. DID I MENTION, THE PAIN NEVER GOES AWAY.

Sometimes it lightens up a bit, maybe after I’ve had a rare good night’s sleep, but if I’ve done too much on a particular day, the next day will be agony. Every day is different, and I’ve learned that there is no rhyme or reason as to what might cause a flare and why some days are better than others. Even as I’m typing this, my hands and wrists are throbbing and I’m making more mistakes typing than I normally do. When I sleep, I have to make sure my fingers aren’t curled, or I’ll wake up and won’t be able to move them.

6. COMFORT ROUTINES FOR FLARE UP DAYS ARE LIFESAVERS

In order to combat chronic pain, you need to have an arsenal of weapons at your disposal. This can include medications, therapies like massage or chiropractic care, acupuncture, heat, cold, stretching, yoga, and other items that help you when your pain is flaring up. Warm fluffy blankets and socks, a TENS machine or massaging unit, a roll-on pain medication – whatever you find works for you is part of your comfort routine and it’s important that you use these items when needed before your pain becomes even worse.

Kitten resting in a fluffy blanket

7. PACING REALLY DOES WORK

One of the important things you learn when you have chronic pain is that you have a limited amount of energy and you have to pace yourself throughout the day/week, etc. in order to stay ahead of the pain. Pacing is critical in helping to prevent flare-ups or in helping to reduce the number of flare-ups you may experience. There comes a point when you may have to consider outside help for chores because you can’t do them all. Perhaps a teenage neighbour can help with cleaning or laundry or care in the garden. Maybe you decide to hire a cleaning service twice a month for a deep clean that you can’t get to. Whatever you need and whatever you decide, my best advice is to lose the guilt. It’s not your fault you have chronic pain. You do what you need to, in order to make your home a happy one again.

8. SLEEP IS A VERY GOOD THING

Most people with chronic pain struggle to get good sleep, just by the very nature of being in pain. Take the time to establish a good sleep routine and don’t be afraid to nap during the day if that’s what your body requires. Just sent a timer for no more than 90 minutes (one sleep cycle) and do it early enough that it won’t interfere with bedtime. If you need to ask your doctor about sleep medications, then ask. Don’t be afraid of them, but perhaps try the more natural solutions first, like melatonin. Your doctor can give you the best advice.

9. WE ARE ALL WARRIORS

Just by the mere fact you are reading this and identifying with it, you are a warrior. Living with chronic pain is no picnic my friend and those of us who do it struggle every single day of our lives. Some days are good, some days are bad and some days are too difficult to talk about. It takes a special kind of strength to manage chronic pain and life at the same time and I admire every single person out there who is doing it. You are a warrior.

10. I’VE FINALLY ACCEPTED MY BODY THE WAY IT IS

For all my bravado and positive spirit, it took me a long time to learn to love this pain-filled body of mine. When I was forced to leave my job at the top of my game in 2009 I was devastated. I didn’t think I’d ever be useful to anyone again and I sank into a deep depression over how my body had let me down. It took several years before I was able to accept that this truly was my “new normal” and that returning to work wasn’t going to happen for me. When I found myself in a place where my health had improved somewhat, and I felt I had something to give back, I started volunteering for the Patient Voices Network and that really helped me get back on my feet. I am able to take part in committee work again, but at a pace that works for me and my health. I’m better able to accept my body and all it’s medical failings because I’ve found ways to contribute again.

I’ve also been able to get involved in hobbies again such as crafting and reading. I’m learning how to crochet and do needlepoint, all things I didn’t have time for when I was too busy working. So accepting my limitations also opened the door to new things for me to try, which has been a blessing. Perhaps you’re in the same place now, ready to accept that this is your new normal, and it’s an okay place to be. If you’re going to be in pain anyways, doesn’t it make sense to accept it and find ways to make the best of it.

CONCLUSION

I’ve been blessed with a positive nature that has helped to get me through a lot of difficult situations in my life. Chronic pain and my medical conditions are part of that. I believe in God and trust Jesus every day to be there for me. I have wonderful family and friends who have been so supportive of me. I belong to a great support group online that genuinely cares about me. More than anything though, and as my first point says,

There is always hope

May 12th Is Fibromyalgia Awareness Day

May 12th is (1)

Fibromyalgia is a Chronic Pain disorder that affects millions of North Americans and others around the world. People who live with this condition experience widespread pain throughout their bodies, along with a host of other symptoms. Sufferers are diagnosed by the “tender points” they have developed over their body as per this illustration:

FibroSymptoms2

In recognition of May 12th, Fibromyalgia Awareness Day, I wanted to share with you a post from the past. It’s titled An Attitude of Gratitude. I wanted to put a different spin on having Fibromyalgia because so often, we focus only on the negative side of illness. It’s natural when you’re chronically ill, but there are reasons to be grateful as well. Read on to see what I mean:

cropped-header-copy.png

Are you grateful for your life?  Are you grateful for the things you’ve been given? Are you grateful for Chronic Pain and Chronic Fatigue? What about your other Invisible Illnesses? For Fibromyalgia? I am, and let me explain why.

I have had my Invisible Illnesses for over half my life now, and they have been a predominant part of my life since 2004 when I went into a major flare that I’ve never recovered from. That was the year I had stomach surgery for severe Gastric Reflux disease – a procedure called a Nissen Fundoplication. The surgery itself was successful, but I suffered nerve damage in the sternum area from where an instrument being used was pressed too hard against a nerve for an extended period of time, causing it to be pinched for over an hour.

This caused me excruciating pain that didn’t resolve for almost a year and had me addicted to morphine pills to the point that I was hallucinating. In fact, at one point, the general surgeon called in a Thoracic surgeon, who was going to crack open my sternum to try and fix whatever the problem was – a drastic solution indeed.

I’m grateful this didn’t happen and the Thoracic surgeon had the sense to suggest a drug called Gabapentin for nerve damage which is what he suspected was the problem, and he was right.

I spent almost a year in a hunched over position, trying to “contain” the pain, it was so bad. I ended up having to go for physical therapy and massage in order to loosen up my muscles to where I could stand in a straightened up position again.

I’m grateful for the therapists that helped me.

I’m grateful there are medical teams in place when we need emergency surgery, such as when a cyst I didn’t even know I had on my ovary burst, causing me horrid pain. It needed immediate removal and there was a team to do that. Just like there was a team to remove my gallbladder and my other ovary when it went rogue as well.

And I’m grateful for my four doctors who have worked with me and my overall health issues over the last five years, Dr Leong, Dr Winston, Dr. Wilson and Dr Burnett, my orthopedic surgeon who did my hip replacement.

Okay, you say…it’s easy to be grateful to the people who help us, but how can you be grateful for having Chronic Pain and Fibromyalgia and all the other stuff. Well, I’ll tell you.

When you have Invisible Illness, you tend to miss out on a lot of life. You may have to give up your job or volunteer activities, your hobbies and family life. You end up losing a lot more than you seem to have left. But what having a Chronic illness does is force you to dig deep to FIND what you’re grateful for. I made a list:

  • Sunrises and sunsets
  • Quiet mornings after a good sleep
  • A perfect cup of coffee
  • A day where the kids get along and no one is fighting
  • A day where the cat or dog doesn’t barf all over the place
  • Feeling energetic enough to accomplish a few things on the “to do” list
  • Feeling rested
  • Feeling less pain than normal
  • Being able to go for a coffee date with a girlfriend or two
  • Having dinner with your family together instead of needing to lay down
  • Date night with your spouse
  • Watching a movie together instead of early to bed
  • Having a bath or shower
  • Having enough food on the table and money in the bank
  • Laughter
  • A sense of safety and security
  • A roof over your head
  • Feeling loved
  • Having a close friend you can confide in
  • Books to read and art to admire
  • Social media like Facebook and Pinterest
  • Ice cream or a favourite treat
  • Family and friends to share memories with
  • Vacations

I could go on and on…the point is, there is so much to be grateful for, but when you live with Chronic Pain and Chronic Fatigue and Invisible Illness, it’s easy to get stuck wallowing in the negatives, to the point you forget to stop and remember to be grateful.

Take a moment now to list a few things that you’re grateful for and make it a habit each day to say thank you. An Attitude of Gratitude is easy to cultivate, but like a good garden, you need to tend to it every day.

Remember…

There is always hope!

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So, what are your thoughts? Were you surprised at how easy it can be to be grateful? It’s not hard to make a list like I did, and I highly recommend that people give it a try.  We live in a busy and scary world, and this is also a good way to take back a bit of control over the craziness. 

Cultivate an Attitude of Gratitude and see how things change in your life. Even if you don’t make a list, there’s one thing you can count on…

There is always hope

Interview April – Terri Sutula

Readers, thank you for checking out our final Interviewee – the fabulous Terri Sutula. 

TerriSutula

Introduce yourself and tell us a bit about you…

Hi, I’m Terri Sutula, and I currently live in the state of Virginia, USA. I’ve been married to the love of my life for the last 21 years, and I’m the Mom of a fabulous grown son. I served 20 years in the Air Force, and after I retired, I went back to school and received my degree in Religion (emphasis church ministry), then obtained my certifications in Personal Training and Health Coaching with the goal of developing a whole-person health ministry. Those plans took a bit of a turn in 2011…. Now I consider my blog to be my ministry, and I hope that by sharing my journey, setbacks and all, I can let people know that there is still life – a great life – after diagnosis, and help them avoid the hopelessness I felt at one point during my illness.

One fascinating fact about me is:

I don’t know if I’d call it fascinating, but it’s something my family loves to tease me about…. I’m constantly making up silly songs to popular tunes. I just can’t seem to help myself haha.

Chronic illness(es)/disabilities I have…

My main issue is fibromyalgia, though I’ve suffered from migraines my entire life, and have also lived with endometriosis, early osteoporosis (probably from the endometriosis treatment), and irritable bowel syndrome for years.

My symptoms/condition began…

Around 2011, my primary fibromyalgia symptoms began after a “snowball” of illnesses, accidents, and a stressful move. I got the flu and soon after that, was diagnosed with subacute thyroiditis, which resolved after about a year. During the same period, I had a couple of bad falls which ended with me doing a face-plant on the pavement. My second fall ended in a trip to the Emergency Room and pain in my ribs for months afterwards. Then, about a year later, we moved to another city, and everything that could go wrong did. I became extremely stressed out, my abdominal symptoms got worse and worse, and the fatigue and whole-body pain became overwhelming.

My diagnosis process was… 

Surprisingly enough, my diagnosis process was pretty quick and easy. I went to my Primary Care doctor, explained my symptoms and my accompanying illnesses, and he checked me for tender points, did some bloodwork, and confirmed what I suspected – that I had fibromyalgia.

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

The hardest thing for me to come to terms with is my physical limitations. As I mentioned earlier, I was in the military for 20 years, stayed mentally and physically strong, and was capable of doing pretty much anything I put my mind to. Learning to work within my revised capabilities has really been a challenge, but it has also been a time of growth. It’s given me greater empathy for others and I’ve discovered a new sense of purpose.

 A typical day for me involves…

I’m not sure I have a really “typical” day – I just do whatever needs to be done on a given day. I do try to do some blog work most days, and I break my cleaning chores into different days so I’m not trying to do everything at once. We’ve started picking up groceries for a few days at a time rather than doing a “big” shopping trip once a week. It gets me out of the house and helps me work with my energy levels. It’s a lot easier to run into the store for a few things than to spend a long time shopping. I guess I’d say I do all the “normal” things others do, just on a smaller, more relaxed scale. I’ve learned that pacing my activities is key to keeping flares at bay.

 The one thing I cannot live without is…

 I have to say that there are actually two things I can’t live without, my faith and a sense of humour. Both of these are my keys to not just surviving, but thriving, with fibromyalgia and any other adverse event or circumstance that comes my way.

Being ill/disabled has taught me…

This illness has taught me that it’s okay to ask for help, and it’s okay to not be okay sometimes. I’ve learned that I don’t have to be strong all the time; it’s okay to share the load with others and asking for help isn’t a sign of weakness; it’s actually a sign of strength.

 My support system is…

My absolute biggest supporter is my husband, and I’m so grateful to have him. I’m very fortunate to have a really supportive family in general, but he’s my day-by-day, minute-by-minute supporter. He sees what I go through many days and is always willing to do whatever I need him to do.

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

I would go hiking on one of the beautiful trails we have around here. My hubby and I used to love to pack a picnic lunch and go hiking, and unfortunately, my pain and energy levels don’t allow us to do that right now. My goal is to work my way up to at least some of the easy trails.

 One positive of having a chronic illness/disability is…

You find out what’s really important to you when you have a chronic illness/disability. When you aren’t in such a place of “doing” all the time, as I was before I became ill, you can concentrate on the things that really add the most value and joy to your life.

One final thing I want people to know is:

There is hope, and there is a fulfilling life after diagnosis. Your life might not look exactly the way you imagined and you might have to learn to adjust to your “new normal” but this new phase of your life might open up even greater opportunities for you to live a life of joy and purpose.

My links are:

Blog: https://reclaiminghope.blog

Facebook: https://facebook.com/hopereclaiming

Twitter: https://twitter.com/hopereclaiming

Pinterest: https://pinterest.com/reclaiminghopeblog

Interview April – Jennifer Purrvis

It’s time to meet my next guest, the wonderful Jennifer Purrvis!

JenniferPurrvis

Introduce Yourself and tell us a bit about you….

My name is Jen. I grew up in the Houston area but live in Wellington, New Zealand. I moved to New Zealand when I was 19 and have lived in various areas in NZ but have kicked around in the capital city for 11 years. I have one daughter who will be 14 and 4 cats. I am single but formerly married. I’m a terrible cook but enjoy baking. I’m currently studying towards a Bachelor of Science in Psychology and hope to get admitted into a Masters of Forensic Psychology programme once I complete my undergraduate. I run Chronic Illness Cat, mostly on Facebook, but you’ll have seen us on other platforms too. Muffin is a real cat, who lives in France, but her dad is from Nelson in New Zealand. He sometimes comes back for a visit but we’ve never met up, though we should.

Chronic Illnesses/Disabilities I have…

I grew up a child of anxiety and depression. After I had my daughter I became severely agoraphobic and was diagnosed with a mood disorder, not otherwise specified. This would finally be diagnosed as Bipolar Disorder in 2018. I also have PMDD.  In 2007, I nearly lost my life after a doctor bagged an IV of an antibiotic I was orange banded as allergic to. I saw a huge white light. I felt a shock hit my body and felt fire ants start biting all over my body. That’s really all I remember. When I woke up I couldn’t unfold my arms or bear weight on my body. It would take years to regain my independence, my tolerance, my sanity. I was so, so angry about the disability attacking me, the pain I was constantly fighting and everything I was losing. It’s been nearly 12 years and things are so much better. I’m so much happier and freer and independent. However, in the last year, I’ve been diagnosed with Autoimmune Urticaria and I’m now on higher dose Cyclosporine. I’ve started to feel those dark shadows creeping in again. The pain is returning, so is the tiredness, reliance on drugs for pain, and I worry about stepping so far back.

My symptoms conditions began…

As a kid. I think I’ve always had an autoimmune disease. I first started getting fevers when I was 2 weeks old. I was just always sick. Always tired. I caught mono twice as a teen. I had chicken pox so severe as a kid I had them down my throat. I know I was severely depressed at 12. I had sleeping issues as a teen. I had coping methods that were not safe or would be suggested. I had a devastating eating disorder.

The night I got so sick back in 2007 was a normal night. I felt slightly off and started feeling worse and worse. I asked to go to the Emergency Department. I expected to have an infection but I didn’t expect to find myself fighting for my life. It turns out I had suspected sepsis. The bag of antibiotics was important, but so was understanding the importance of orange banding of patient allergies.

Fast Forward to the present and the first few days of realising I was getting sick again were terrifying. I knew something was wrong, but I never expected it to be something so full on. The first symptom I started experiencing was itching when sweating. Whenever and wherever the sweat would touch, I would feel like a jellyfish sting and hideous itching. I put it down to being ‘dirty’. The second major symptom that developed was a reaction to showering. Wherever the water hit, another jellyfish-like sting would develop, with burning and itching. But following the itching and burning came nausea, a feeling of being overwhelmed in the head and vomiting.

I started taking antihistamines, antihistamines and h-blockers, more antihistamines and finally saw a specialist who told me that due to my previous history of trialling drugs, I was to start Cyclosporine. At first, I was really optimistic because I had 2 weeks of showering with very little symptoms. But then, as soon as it had arrived, the optimism left. All the symptoms were back.

My diagnosis process has been…

Confusing. When I was first sick in 2007, no one knew what was wrong with me. I saw specialists and doctors all the time. People had opinions from Lupus to Still’s Disease to MS to ‘just experiencing a shock’. To get better care, we sold our home and moved. I saw another specialist who told me I had Lupus and “was just being a woman about it”. I was put on every drug you could find. Nothing helped. Nothing improved.

I saw just about every rheumatologist in the capital city. No one had answers for me. In the end, I just stopped going. It wasn’t worth the money. When I started getting sick again, and the blood tests were all fine, it started feeling like deja vu all over again.

However, this time, the specialist knew that this was Autoimmune Urticaria and that I had some dermagraphica which made him feel more confident. It felt unusual that I actually had symptoms someone was familiar with. Though, he did feel there was more autoimmune going on and asked if I wanted to begin looking for that and I told him I didn’t. I just couldn’t face doing it all again.

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

Not knowing if I’m ever going to live normally as other people do. Will I be able to work? Will I finish my studies? Will I ever be independent? It scares the hell out of me. What if the medicines just get worse? I can’t nap through life. These questions just go around and around my mind sometimes. Fears for my future feel almost disabling at times.

A typical day for me involves…

Waking at 6:30. If it’s my week with my daughter then I get up with her and help her get ready for school. Once she’s left for the bus, I head back to bed. If I’m not with her, I go back to sleep. I try to wake up at 6:30 regardless so as to keep a regular rhythm. Sleep is so crucial for the maintenance and care of the Bipolar person. When I wake up I have a cup of tea and run errands or study, depending on the day. It’s really important for me to keep my grades up, so studying is important.

I’ve gotten it into my head that I need to do some sort of exercise, even though I’m not supposed to change my body temperature and/or sweat. I have some hand weights and I’m looking into belly dancing on youtube. I want to stay active for my brain and I want to stay mobile. But gosh, I know I’ve lost a lot of dexterity and put on weight since I stopped going to the gym. Swimming is out, maybe yoga? Am I that cliche? Just do some yoga?

I try to eat normally but I’ve got some problems with eating and I take Seroquel at night, so that makes up for any lost calories I haven’t eaten during the day. Right now Married at First Sight Australia is on, so I’m pretty addicted to that. Otherwise, I just try to rest and study. Glamorous, right?

One thing I cannot live without is…

Hot tea. I’m thoroughly addicted to caffeine and classic Bell Tea with milk gets me through my day. I probably go through 6 to 8 tea bags a day. It’s probably the reason I actually can move. Also, probably why I don’t sleep much.

Being ill taught me…

To take nothing for granted and to be amazingly grateful for the gifts that I have. Being able to walk is tremendous. I spent 9 months on the couch. Slowly I learned to crawl, then scoot and then walk again. Amazing. Getting the energy to work in cat rescue and change litter pans and chase after cats made me forever grateful for the second chance I was given. Now I’m studying to become independent. I’ve got my brain back. I will never not be angry and horrendously filled with rage at what happened to me, but I will also never not be amazed and filled with gratitude that I am where I am today. I’m a survivor.

The advice I’d given someone newly diagnosed…

Is that life goes on. It’s different but it goes on. It’s like when the brand of your favourite chip alters things and it’s never the same but you just go on buying it all the same. You can’t pretend nothing has changed, but at the same time, you still enjoy it enough to keep buying it. Some days are going to be horrific. And you’ll cry. You’re entitled to cry. And get mad. And kick at things. But some days will be not so bad too. And hopefully, you’ll get more of those not so bad days soon enough. That’s all you can ask for. And hugs. Ask for hugs. No one will think less of you for doing so.

My support system is…

Really small. I have a really truly, true-blood ride or die best friend on the net but-not-imaginary friend who gets me and loves me and would do anything for me named Alice. She’s also on the Page. I hope one day to be able to explain to her how much she means to me. And to thank her for lifting me up on those really shitty days.

I have my ex who does a lot of practical things for me. I have my daughter who shouldn’t have to grow up so quickly. And myself. I lean on my GP, Simon, a lot. And that’s it. I do a lot of the emotional stuff myself. I’ve become a lot quieter and controlled. Well, the Abilify has made me that way. I could do with a therapist. And a boyfriend. But we’ll see.

If I had one symptom-free day…

Gosh, I’d just sleep. Nothing would hurt. I’d shower too. Wash my hair and not throw up. Go lay in the sun. And sweat. Imagine!

One positive of having a chronic illness is…

That it gives me an amazing sense of humour and fantastic charm. I can joke around with just about anyone and I relate to a large number of people going through many things. It’s given me a sense of empathy that’s lead me to psychology and wanting to care for others. I’ve always been sort of activist-y anyways, but being sick has really pushed that envelope in fighting for others to get the same rights and access, which has been super useful having a daughter with extra needs.

Thanks so much for having me. You can find me and Muffin at the links below. And me and my kitties on my personals.

My Social Media links:
Facebook: https://www.facebook.com/ChronicIllnessCat
The Cat Tree: https://www.facebook.com/groups/thecattree/
Twitter: https://twitter.com/chronillcat
Instagram: https://www.instagram.com/chronicillnesscat/
Personal Instagram: https://www.instagram.com/smilingtabby/
Personal Twitter: https://twitter.com/kittypajama

Interview April – Amber Blackburn

Let’s welcome our next guest, the adorable Amber Blackburn!

AmberBlackburn

Introduce yourself and tell us a bit about you…

Hi y’all! My name is Amber Blackburn, I am 33 (almost 34) and live in the middle of the United States.  I am a Registered Nurse by trade who is now a Chronic Illness Blogger and Advocate due the fact that my health has declined to the point that I can no longer work a standard job!

Chronic illness(es)/disabilities I have…

Way too many for someone my age!  I don’t even know where to start!! I have Systemic Lupus (SLE), Fibromyalgia, Bertolottis Syndrome, IBS, Anxiety, Depression, Endometriosis, Interstitial Cystitis, Secondary Adrenal Insufficiency due to long term steroid use, POTs, Debilitating Migraines (Some of which are hemiplegic). I think that’s all my conditions. Or at least the important ones. I will note that many of my issues alone are not disabling but in combination with all the others they can be.

My symptoms/condition began and My diagnosis process was

I am going to combine these two questions as it makes my response easier.

I was admitted to the hospital for a respiratory illness in February 2012. I was in the hospital for 5 days and they could never really figure out what was going on. So I was put on high dose steroids and antibiotics and was told that would probably fix it. Over the following months more symptoms started showing up beyond the respiratory issues like extreme fatigue, joint pain and joint swelling. They had done all kinds of labs up to this point and nothing had shown up. But finally my Pulmonologist did a repeat ANA and lupus markers in April 2012 and they came back very positive. The joint pain and swelling continued to worsen to the point that I had to buy bigger shoes and could hardly walk.

So I saw a Rheumatologist in the summer of 2012 and was diagnosed with Systemic Lupus and Fibromyalgia. But looking back my symptoms go back to the late 90s, early 2000s. During my junior year of High School in 2001 I was diagnosed with Mono and it lasted SIX months, which does not happen. So we are pretty sure part of that was actually my first lupus flare. My official Endometriosis and Interstitial Cystitis diagnosis was in November 2011 but those symptoms went back to 1998 when I started having such horrible abdominal pain that no one could diagnose and blamed it on IBS.
The hardest part of living with my illness/disabilities is…

If I am being 100% honest the hardest part of living with my illnesses is not always dealing with my health. Outside of the pain and fatigue when they get really bad, I find the hardest part to be the social aspects. This may sound silly but it’s super hard to have to stay home all winter because you pick up every germ despite wearing a mask and washing your hands. It’s hard having to cancel plans because you don’t feel good enough to leave the house. Also, trying to explain to those who aren’t sick why you are canceling for the third time this month is awful and hard on relationships. For me (and surely others) the social aspect is probably the hardest part of living with a chronic illness, outside of the obvious health issues.

A typical day for me involves…

A typical day for me starts with me waking up and rolling over and stretching. Trying to see what hurts and what doesn’t. Then spending the next 10-15 min actually getting out of bed because if I don’t do it slowly I’ll pay for it later. What happens after that depends on the day. If I have a doctors appointment or somewhere to be, I will start the getting ready process which can take 10 mins or an hour depending on how I feel, and how ready I need to be. As well as how many breaks I will need to take. If I don’t have anywhere to be I go straight upstairs to eat and take care of my dogs. In the morning I will always be checking social media and do my daily posts (that sometimes become 3 times a week posts) on all my platforms.

I will most likely be writing for my blog and posting if it’s a day to post. I try to write something for the blog everyday, that way I don’t feel rushed at anytime because I don’t have anything written. I may not get a whole piece written every day but I try to write something. There is always an afternoon “nap” if I can’t get comfortable and sleep than I at least lay in bed and rest. And the evenings are usually pretty chill. Generally speaking, I spend the evenings watching a show or reading a book. I take a shower and try to be in bed by nine. When I fall asleep will depend on what I did that day and how much pain I’m in. Everyday is different for me because I never know how I will feel. I always know if I did a lot the day before that the next day will be a day of rest. Honestly, I can’t plan to far in advance because I never know how I will feel.

The one thing I cannot live without is…

I hate to admit this, my phone.  I say this because I use my phone for everything. I use it for communication, with my friends, family and medical providers. I use it to help run the Chronic Illness Support Group on Facebook (Lupie Groupies) I started about 5 years ago which continues to grow. I use it to blog, to research, and post on social media. And I use it for my jobs, I sell Senegence Makeup as well as the Chronic Illness Symptom Tracker that I created for those with chronic illness.. For those reasons my cell phone is important to me.

Being chronically ill/disabled has taught me…

Being chronically ill has taught me so so many things. But I honestly think the biggest thing is that being sick has a way of showing you who your true friends (and family sadly) are. I know it sounds cliche but it’s very true.

What advice would I give someone recently diagnosed…

The biggest piece of advice I would give to someone who was recently diagnosed would be to find a support group!  No matter if it is online or in person, just find one. Your friends and family are good to talk to, but a support group filled with people in similar situations is imperative for anyone newly diagnosed as well as for those who have been ill for many years. A support groups gives you a place where you can share what is really going on and know that you are talking to people who will understand and won’t judge you.

My support system is…

My support group is AMAZING!! I have the most amazing family and group of friends a person could ever ask for. If I didn’t have my family I don’t know where I would be right now. I am truly lucky.
If I had one day symptom/disability-free I would…

Go to the beach or lake (really any body of water) and spend the day outside playing in the water without the fear of a flare.

One positive of having a chronic illness/disability is…

One positive thing about having a chronic Illness is meeting a group of wonderful and amazingly strong people whom you would have probably never met had you not gotten sick.

My social media links are:

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

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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