There Is Always Hope

Living with Chronic Illness is an act of bravery. When each of your days is spent in pain and discomfort, it takes a lot of courage to keep going. I want to talk about hope…how to have it to get through your life and how it helps to keep a person going.

there is always hope

What is HOPE? Here is one definition I found that I think sums it up:

Hope is an optimistic state of mind that is based on an expectation of positive outcomes with respect to events and circumstances in one’s life or the world at large. As a verb, its definitions include: “expect with confidence” and “to cherish a desire with anticipation.”

Being optimistic is essential when you live with Chronic Illness, because the alternative is unacceptable. If you only see negatives, then you end up wallowing in misery and that compounds how you feel physically and mentally. I truly believe that even in the worst illnesses, there are positives to be found.

  1. You gain a better perspective of your own strengths
  2. You show more compassion for others who are struggling
  3. You understand the human condition for what it is and tend to reach out more to others
  4. Every accomplishment is a victory
  5. You find greater wisdom from those around you

Expecting with confidence is based on faith – trusting that what you want the most will come true. Realistic faith is a good thing and ridiculous faith is even better! What is ridiculous faith? It’s when you hope and pray for something which is beyond reasonable expectations, but still anticipate that miracles could happen.

Do you need Religion to have Hope? I don’t think so. It can help in many ways, as prayer can be a very comforting thing, but I don’t think it’s necessary. Many people consider themselves Spiritual rather than Religious and find comfort in ritual, nature or other traditions. Prayer may not be a part of their lives, but they still find comfort in the routines they’ve established for themselves.

I am a Christ Follower and find prayer to be essential to my well-being. It comforts me to know that I have a God who is bigger than me and who holds me in the palm of His hand. I trust that He has a plan for my life and though I may not understand it, I accept it. Acceptance on it’s own can be comforting.

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Image by Daniel Reche from Pixabay

So how does one go about growing Hope in their lives? What steps do you have to take to have faith in the things that are happening in your life, good and bad?

  1. Acknowledge your strengths. Chronic Illness can rob us of our confidence. Try making a list of all of your strengths and accomplishments. Read through the list and congratulate yourself for these positive traits. Understanding that you still have much to offer the world goes a long way in inspiring hope in the soul.
  2. Cultivate supportive relationships. As much as you can, surround yourself with supportive and caring people. People who help you to feel good and encourage you to be your best help to increase your sense of wellbeing. Having a supportive network of friends will help you to further your interests and goals. It’s much easier to find hope within a strong community as opposed to completely on your own
  3. Look at the activities and attitudes of people around you. See if any of them can serve as role models for what you would like to accomplish for yourself. Also, consider how the people around you act and make you feel. When you surround yourself with hope and success, it naturally trickles down into your own life. Like attracts like.
  4. Engage in pleasurable activities. Doing things that you enjoy can also help you to develop your sense of hope. By engaging in activities that make you happy every day, you will have a greater sense of purpose. If you are not sure about what activities bring you the most joy, try out some new things to figure it out. Take a class at your local community college, try a new exercise routine (Aqua-based activities are easy on the body), learn a new skill, or start a new hobby.
  5. Get involved with a cause. Volunteering for a cause you believe in is a great way to cultivate hope towards the future. This can be in either your local community or even an online community if mobility is an issue for you. Patient Advocacy is an area that is under-represented and working with Health Care Organizations can have a huge impact on yourself as well as others who live with Chronic Illness.
  6. Build relationships with others. When you start to build new relationships over common goals or projects, your sense of hope can greatly increase as you see results from your efforts. Involving yourself with other people who share your interests can help you to overcome alienation, which can cause a feeling of hopelessness.
  7. Get out of your comfort zone. This is essential to changing your thought patterns and learning to approach the world with more hope. Go out with friends after work instead of going straight home. Join a club or group so you can share new experiences with others. Develop a new hobby. Put yourself out there in ways that make you mildly uncomfortable at first.
  8. Keep track of your thoughts and feelings in a journal. Journaling is a great way to understand why you have been feeling hopeless and it is also a great stress reliever. To get started, buy a beautiful journal and a nice pen or pencil. Choose a comfortable place and plan to devote about 20 minutes per day to writing. Start by writing about how you are feeling, what you are thinking, or whatever else is on your mind.
  9. Try keeping a gratitude diary. Every night, think of three things you are grateful for and write them down. Doing this every day will help you to develop a more hopeful outlook and it can also help you to sleep better and enjoy better health. 
  10. Take care of yourself. Exercise, eat healthy food, get plenty of rest, and relax. By taking good care of yourself, you are sending your mind signals that you deserve to be happy and treated well which can increase your hope for the future. Make time to take care of yourself
    • Exercise to the best of your ability.
    • Eat a balanced diet of healthy foods like fruit, vegetables, whole grains, and lean proteins.
    • Get 7-9 hours of sleep per night. Use good sleep hygiene if you have trouble sleeping.
    • Set aside at least 15 minutes per day to relax. Practice yoga, do deep breathing exercises, or meditate.
    • Stay hydrated
    • Go for a massage or have body work such as Reiki to help balance you.
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Hope doesn’t have to be a fleeting thing…it can be a strong and deciding factor in your day to day life. I live every day with the hope it will be a good day. Positivity goes a long way in making me feel better physically, mentally and spiritually. I’m realistic about what I am and am not able to do, but I never give up hope that things will be better. It’s all about attitude and choosing how you want to feel.

I hope these ideas and suggestions are useful for you. I named my blog There Is Always Hope because I truly believe that statement. Even in the worst of our moments, I believe there is always a tiny light burning bright for us. We just have to look for it. Sometimes that means stepping out of our comfort zone and doing something we never thought we were capable of, but if we can overcome our fear, we may be surprised as to what we find.

And so I end this post as I always do and I mean it even more today…

There Is Always Hope

chronic pain and addictions (1)

Pet Therapy for Chronic Illness

Previously posted on The Zebra Pit

Fibromyalgia can be a lonely disease. Staying connected with friends and family becomes difficult when chronic pain and fatigue make it hard to get out and about like you used to. Sometimes, having a pet can make all the difference in the world!

Not only will a furry friend give you some companionship, but it turns out that pet therapy can actually be a pretty effective way of dealing with fibromyalgia pain. Here’s how it works.

What Is Pet Therapy

woman holding adult siberian husky
Photo by andres chaparro on Pexels.com

Pet therapy is a guided interaction between a person and a trained animal. It also involves the animal’s handler. The purpose of pet therapy is to help someone recover from or cope with a health problem or mental disorder. Basically, it involves using specially trained animals like cats and dogs to provide comfort to people who suffer from diseases like fibromyalgia, cancer, dementia, etc. The animals provide companionship while the patient pets or plays with them, reducing the amount of stress and pain they feel.

The biggest concern when it comes to pet therapy is making sure that the animals are well-trained and vaccinated. Because pet therapy is often done in hospitals, doctors want to be sure that a dog won’t get loose and run around contaminating the area.

With that being said, pet therapy, when done by a professional, is perfectly safe and can be very effective in treating fibromyalgia pain.

What Are The Benefits Of Pet Therapy?

Pet therapy builds on the pre-existing human-animal bond. Interacting with a friendly pet can help many physical and mental issues. It can help reduce blood pressure and improve overall cardiovascular health. It can also release endorphins that produce a calming effect. This can help alleviate pain, reduce stress, and improve your overall psychological state.

How Can Pet Therapy Ease Fibromyalgia Pain?

siamese cat
Photo by Min An on Pexels.com

While the idea that simply petting a cat or dog can actually help your fibromyalgia pain seems a little far-fetched, there’s some basic science that backs it up. You see, petting an animal has been shown to cause your body to release lower levels of cortisol, which is the hormone linked to stress. And cortisol levels are directly linked to the amount of pain people with fibromyalgia feel.

And in addition to helping deal with your fibromyalgia pain, pet therapy also has other benefits. Depression and anxiety are both common among people with fibromyalgia, and it turns out that pet therapy can also help significantly with those symptoms. People who engage in pet therapy report consistently lower levels of stress and anxiety than people who don’t. There’s something about stroking a companion animal that lends a level of comfort to people who are suffering.

And taking care of an animal also helps people with fibromyalgia get more involved in daily life. Taking the animal on walks or playing with them in the park are great ways to coax yourself out of bed. And that’s especially true on days when your fibro pain makes you want to just close the curtains and go to sleep. So, a therapy animal can even be a link to the rest of the world when you have fibromyalgia.

So pet therapy can not only help you reduce your fibromyalgia pain, it can help you feel happier and less anxious.

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How Can You Start?

woman wearing gray jacket beside white puppy
Photo by Oleksandr Pidvalnyi on Pexels.com

Your doctor or therapist managing your treatment will administer pet therapy. A trained handler, often the pet’s owner, will take the animal to every meeting and work under your doctor or therapist’s direction to help you reach your goals. In most cases, the handlers work as volunteers. Discussion of proper pet handling is needed to ensure the safety of both the person receiving treatment and the pet.

Or if you prefer, you can also purchase your own animal that has been trained to be a therapy animal. There are lots of different breeders and trainers. And one should be able to help you find what you are looking for. A quick google search should be enough to find some in your area.

So maybe you’re the kind of person who hates having to leave their loyal pet behind. Well, getting them certified to provide therapy means that you can get comfort from them anywhere you go. And that can be a great thing when you’re suddenly struck by a fibromyalgia flare-up during your daily routine.

Animals make great companions, and it turns out that they might actually be great for treating fibromyalgia pain too. So if you’re tired of trying side-effect riddled medications, some alternative pet therapy may just be for you.

Outlook

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Photo by Dids on Pexels.com

The success of pet therapy depends on establishing realistic goals and expectations and meeting those goals. You and your doctor or therapist will establish these goals at the beginning of your treatment. You’ll also discuss how to reach those goals and how long it will take.

Your doctor or therapist will monitor your progress and help you stay on track to meet your goals. If your progress is slower or faster than expected, they may alter your treatment plan. Remember,

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Gratitude – Finding the Good in the Bad

Previously posted on The Zebra Pit

When I wrote my post An Attitude of Gratitude, I received a lot of good comments on it, both those left with the post and in other formats. I meant every word of that post and I wanted to expand on that today, and THANK my body for all it does, despite Fibromyalgia (and several other health conditions). Here are some of the reasons I have to thank my body (and my mind!)

I Have A Strong And Compassionate Heart

Physically, my heart is in tip-top shape. After experiencing some chest pain a few years ago, I was put through a battery of tests including a heart scan and an ultrasound. Everything came back showing my heart to be in excellent shape and my risk of heart attack to be at approximately 1% based on all factors in my life.  Now that’s pretty amazing when you consider all the health conditions I live with, but I trust the tests and the monitoring.

What I tend to be most concerned with when it comes to my heart is how compassionate am I? Do I care about others? Do I show it? Do I reach out when others need a hand or a shoulder to lean on? Those are the heart conditions that I worry about and I work hard to make sure I’m staying heart-healthy in this area too.

I’ve Been Blessed With Common Sense

Not many people know that I never graduated High School. I only finished with a Grade 11 education, and while I’ve taken College courses to complete a Certified Event Planning Certificate, I’ve never furthered my formal education. I was able to get a good job in a field I loved by working hard and having common sense, which I believe is something sorely lacking in many people these days.

I don’t know if common sense is something you’re born with or something you learn. I only know that it comes naturally to me. It’s intuitive, it’s part of me and I don’t struggle with it…it’s just who I am. I may not be the most well-educated person in the group, but at least I have this gift.  I’m always thinking and strategizing about scenarios and how I would handle them. I rarely panic anymore about things…I just seem to know how to get on with it. I’m eternally grateful for this ability and I don’t take it for granted.

I’m Able To Give Back To Others

Volunteering is hugely important to me. Having the ability to give back to others makes me feel good and that’s why I sit on committees and working groups, so I can make the improvements that enhance the lives of others. My involvement with Patient Voices Network was a game-changer from the first time I attended the orientation session. PVN is an organization in British Columbia that allows ordinary citizens to have a say in how health care is delivered in our province.

Through my involvement with PVN, I’ve been able to attend conferences and education sessions, sit on committees (4 of them at the moment!) and take part in surveys, including being part of a group that is actually creating a Provincial survey for release in the next year. I’ve traveled for my volunteer work, met incredible accomplished people at all levels of business and government and work alongside other Patient Partners who, like me, are out there making change happen.

I Can Spend Time with Loved Ones

Being able to spend time with my husband and kids and friends is critical to my overall wellbeing. Ray and I have a motorcycle and we love to go for rides around Vancouver Island and the Gulf Islands. When I travel with my volunteer work, I’m often able to meet with our daughter Ashley for lunch or dinner in Vancouver where she works, and this is a huge treat. Our son Troy is in Calgary and I am able to see him when I travel there to stay with a dear girlfriend Charlotte twice a year. These are great blessings to me!

I don’t have a lot of friends who live near me, but I treasure the ones I can get together with all the more, especially Lorna. My online friends play an important part in my life as well –I’d be lost without them. I belong to a few online groups who fulfill a need in me that only they could meet. My body and mind function better because of all these interactions and I tend to forget that sometimes, especially when I’m having a high pain day. I can get very reclusive, but it’s good to know that loved ones are there when I need them, just as I am there for them.

I’m Still Able To Read And Listen To Music

I consider myself lucky that none of my health conditions have taken away the deep pleasure I get from reading and from music. I love reading the life stories of others in the form of biographies and autobiographies. Great fiction warms my heart. True Crime stirs my compassion for others. Reading a good book of any genre is a total act of joy for me and to lose that ability would be heartbreaking, even with all the other options available.

The same goes for music. I don’t listen to music every day, or even that often, but when I’m in the mood for it, it completely fills my soul. My tastes are eclectic, running from Acapella to Zydeco and I’m grateful there are so many ways to be exposed to music in this digital age. The internet has been a wonderful source of entertainment in my life and I’m thankful my body allows me to enjoy the endless variety it brings.

I’m Grateful To Be Able To Blog

No matter what my body throws at me physically, I’m still able to write and for that, I have no words. Writing is very personal for me, as it’s all based on my life and what I’m going through. My thoughts and hopes and disappointments are all shared in equal value and it’s a unique feeling to expose myself like that. I don’t mind the scrutiny at all, because I do this of my own free will, but there are times I wonder if I should censor myself more or be even more open.

No matter how bad things get for me physically, I cling to the knowledge that it can get better. Yes, it might get worse, and often does, but even in the worst of my pain, when I’m writhing in bed in agony, there’s a part of me that refuses to give up or give in. That tiny stubborn piece of me that says “hold on, pain ends.”  HOPE.

It’s an honour to know that you, dear reader, are taking in my words and finding something useful. That’s something I’m grateful to my body for, too. No matter how bad things may get physically, you can’t take that away from me.


50 Christmas Quotes

Revised from last year, I thought it was a good time to share my favourite Christmas quotes!

In the Spirit of the Season, here are 50 Christmas quotes to help bring good cheer to your heart during the holidays. Thanks to the website Daring To Live Fully for the list.

1. “I sometimes think we expect too much of Christmas Day. We try to crowd into it the long arrears of kindliness and humanity of the whole year. As for me, I like to take my Christmas a little at a time, all through the year. And thus I drift along into the holidays – let them overtake me unexpectedly – waking up some fine morning and suddenly saying to myself: ‘Why, this is Christmas Day!’”

~ David Grayson

2. “It’s beginning to look a lot like Christmas;
Soon the bells will start,
And the thing that will make them ring
Is the carol that you sing
Right within your heart.”

~ Meredith Willson, “It’s Beginning To Look A Lot Like Christmas”

3. “Christmas gift suggestions: to your enemy, forgiveness. To an opponent, tolerance. To a friend, your heart. To a customer, service. To all, charity. To every child, a good example. To yourself, respect.”

~ Oren Arnold

Christmas quotes

4.

5. “Gifts of time and love are surely the basic ingredients of a truly merry Christmas.”

~ Peg Bracken

6. “Instead of being a time of unusual behavior, Christmas is perhaps the only time in the year when people can obey their natural impulses and express their true sentiments without feeling self-conscious and, perhaps, foolish. Christmas, in short, is about the only chance a man has to be himself.”

~ Francis C. Farley

7. “It is Christmas in the heart that puts Christmas in the air.”

~ W.T. Ellis

8. “Christmas waves a magic wand over this world, and behold, everything is softer and more beautiful.”

~ Norman Vincent Peale

9. “Christmas now surrounds us,
Happiness is everywhere
Our hands are busy with many tasks
As carols fill the air.”

~ Shirley Sallay

10. “Each sight, each sound of Christmas
And fragrances sublime
Make hearts and faces happy
This glorious Christmastime.”

~ Carice Williams

11. “Blessed is the season which engages the whole world in a conspiracy of love!”

~ Hamilton Wright Mabie

12. “Christmas is not as much about opening our presents as opening our hearts.”

~ Janice Maeditere

13. “Love is what’s in the room with you at Christmas if you stop opening presents and listen.”

~ Author unknown, attributed to a 7-year-old named Bobby

14. “I wish we could put up some of the Christmas spirit in jars and open a jar of it every month.”

~ Harlan Miller

15. “Christmas is the season of joy, of holiday greetings exchanged, of gift-giving, and of families united.”

~ Norman Vincent Peale

16. “Christmas is most truly Christmas when we celebrate it by giving the light of love to those who need it most.”

~ Ruth Carter Stapleton

17. “Good news from heaven the angels bring,
Glad tidings to the earth they sing:
To us this day a child is given,
To crown us with the joy of heaven.”

~ Martin Luther

18. “The best of all gifts around any Christmas tree: the presence of a happy family all wrapped up in each other.”

~ Burton Hillis

19. “Probably the reason we all go so haywire at Christmas time with the endless unrestrained and often silly buying of gifts is that we don’t quite know how to put our love into words.”

~ Harlan Miller

20. “For centuries men have kept an appointment with Christmas. Christmas means fellowship, feasting, giving and receiving, a time of good cheer, home.”

~ W. J. Tucker

21. “Christmas is not just a time for festivity and merry making. It is more than that. It is a time for the contemplation of eternal things. The Christmas spirit is a spirit of giving and forgiving.”

~ J. C. Penney

22. “I heard the bells on Christmas Day
Their old, familiar carols play,
And wild and sweet
The words repeat
Of peace on earth, good-will to men!”

~ Henry Wadsworth Longfellow

23. “I love the Christmas-tide, and yet,
I notice this, each year I live;
I always like the gifts I get,
But how I love the gifts I give!”

~ Carolyn Wells

24. “Mankind is a great, an immense family. This is proved by what we feel in our hearts at Christmas.”

~ Pope John XXIII

25. “Let us have music for Christmas…
Sound the trumpet of joy and rebirth;
Let each of us try, with a song in our hearts,
To bring peace to men on earth.”

~ Mildred L. Jarrell

26. “Christmas is not a time or a season but a state of mind. To cherish peace and good will, to be plenteous in mercy, is to have the real spirit of Christmas.”

~ Calvin Coolidge

27. “I don’t think Christmas is necessarily about things. It’s about being good to one another, it’s about the Christian ethic, it’s about kindness.”

~ Carrie Fisher

28. “What is Christmas? It is tenderness for the past, courage for the present, hope for the future. It is a fervent wish that every cup may overflow with blessings rich and eternal, and that every path may lead to peace.”

~ Agnes M. Pharo

29. “May Christmas lend a special charm
To all you chance to do.
And may the season light your way
To hopes and dreams anew.”

~ Garnett Ann Schultz, “My Christmas Wish”

30. “I’m dreaming of a white Christmas,
Just like the ones I used to know,
Where the tree tops glisten
And children listen
To hear sleigh bells in the snow.”

~ Irving Berlin

31. “I will honor Christmas in my heart, and try to keep it all the year.”

~ Charles Dickens, Ebeneezer Scrooge, A Christmas Carol

32. “And the Grinch, with his Grinch-feet ice cold in the snow, stood puzzling and puzzling, how could it be so? It came without ribbons. It came without tags. It came without packages, boxes or bags. And he puzzled and puzzled ’till his puzzler was sore. Then the Grinch thought of something he hadn’t before. What if Christmas, he thought, doesn’t come from a store. What if Christmas, perhaps, means a little bit more.”

~ Dr Seuss

33. “The merry family gatherings–
The old, the very young;
The strangely lovely way they
Harmonize in carols sung.

For Christmas is tradition time–
Traditions that recall
The precious memories down the years,
The sameness of them all.”

~ Helen Lowrie Marshall

34. “Christmas is forever, not for just one day,
for loving, sharing, giving, are not to put away
like bells and lights and tinsel, in some box upon a shelf.
The good you do for others is good you do yourself.”

~ Norman Wesley Brooks, “Let Every Day Be Christmas”

35. “This time of year means being kind
to everyone we meet,
To share a smile with strangers
we may pass along the street.”

~ Betty Black

36. “Until one feels the spirit of Christmas, there is no Christmas. All else is outward display–so much tinsel and decorations. For it isn’t the holly, it isn’t the snow. It isn’t the tree not the firelight’s glow. It’s the warmth that comes to the hearts of men when the Christmas spirit returns again.”

~ Unknown

37. “There is a Christmas song upon the air,
There is a joy innate within the heart;
An inner sense of peace, a holy light
Illumines life and sets these days apart.”

~ Edna Greene Hines

38. “I am not alone at all, I thought. I was never alone at all. And that, of course, is the message of Christmas. We are never alone. Not when the night is darkest, the wind coldest, the world seemingly most indifferent. For this is still the time God chooses.”

~ Taylor Caldwell

39. “Christmas in Bethlehem. The ancient dream: a cold, clear night made brilliant by a glorious star, the smell of incense, shepherds and wise men falling to their knees in adoration of the sweet baby, the incarnation of perfect love.”

~ Lucinda Franks

40. “Are you willing to believe that love is the strongest thing in the world – stronger than hate, stronger than evil, stronger than death – and that the blessed life which began in Bethlehem nineteen hundred years ago is the image and brightness of the Eternal Love? Then you can keep Christmas.”

~ Henry Van Dyke

41. “Ask your children two questions this Christmas. First: What do you want to give to others for Christmas? Second: What do you want for Christmas? The first fosters generosity of heart and an outward focus. The second can breed selfishness if not tempered by the first.”

~ Author Unknown

42. “Bless us Lord, this Christmas, with quietness of mind; Teach us to be patient and always to be kind.”

~ Helen Steiner Rice

43. “Christmas! The very word brings joy to our hearts. No matter how we may dread the rush, the long Christmas lists for gifts and cards to be bought and given–when Christmas Day comes there is still the same warm feeling we had as children, the same warmth that enfolds our hearts and our homes.”

~ Joan Winmill Brown

44. “Christmas – that magic blanket that wraps itself about us, that something so intangible that it is like a fragrance. It may weave a spell of nostalgia. Christmas may be a day of feasting, or of prayer, but always it will be a day of remembrance – a day in which we think of everything we have ever loved.”

~ Augusta E. Rundel

45. “Christmas day is a day of joy and charity. May God make you very rich in both.”

~ Phillips Brooks

46.

Christmas quotes

47. “Christmas is doing a little something extra for someone.”

~ Charles Schulz

48. “Christmas, my child, is love in action.”

~ Dale Evans

49. “Off to one side sits a group of shepherds. They sit silently on the floor, perhaps perplexed, perhaps in awe, no doubt in amazement. Their night watch had been interrupted by an explosion of light from heaven and a symphony of angels. God goes to those who have time to hear him–and so on this cloudless night he went to simple shepherds.”

~ Max Lucado

50. “Want to keep Christ in Christmas? Feed the hungry, clothe the naked, forgive the guilty, welcome the unwanted, care for the ill, love your enemies, and do unto others as you would have done unto you.”

~ Steve Maraboli

Season of Miracles

Thoughts

As we enter the Season of Miracles, I wanted to write today about something that’s been on my heart. Joy and Miracles and hope for the future.

There is so much hope that comes with Christmas and Hanukkah – the Birth of the Christ Child, the Miracle of the Oil burning for 8 days – and I want us to see that despite Chronic Illness, there can still be joy and miracles and things to look forward to.

After living with Chronic Illness for over 30 years, my list of physical ailments is long and continues to grow. I also have a mental illness to deal with which will be with me for the rest of my life.

Having Bipolar Disorder was a frightening diagnosis for me, but after finally getting it under control with the proper medications, it’s become a real non-factor in my life and I often forget that I have it.

To me, that’s a miracle.

Each year though, my physical pain gets worse, and so does my Chronic Fatigue. I struggle more with pain management and all the side effects, but I’ve also learned new tips and tricks to help deal with my days – another reason to feel hopeful.

Making Changes

In a previous post, I wrote about complementary medicine and how it can help with Chronic Pain. I am a true believer in trying new solutions for old problems and had some great feedback about this article. I hope you were able to incorporate some of these ideas, or will look at the post to give them a try.

Living with Chronic Pain can be a bittersweet encounter – bitter because of the pain and side effects and all the negative changes in your life, but sweet because there are still things to be grateful for.

Research

There is new research on the horizon for diagnosing Fibromyalgia – the work being done to develop accurate blood testing has never been more exciting, and with science on our side, things are bound to have a positive impact in our lives.

The sooner we get a true diagnosis, the sooner treatment can start.

Treatments themselves are becoming better too, now that we understand that Fibromyalgia isn’t an autoimmune disorder and that its roots lie in the nervous system and the inability to communicate properly with the brain and spinal canal regarding pain signals.

Although there haven’t been any new medications released to treat Fibro, Gabapentin is being used more commonly in conjunction with the approved medications (Savella, Cymbalta and Lyrica) with good results.

More and more patients are becoming involved in Research for their health conditions, and Clinical Trials are being held across North America on a regular basis.

For more information about clinical trials, you can sign up here at ClinicalTrials.gov to see if you qualify for studies on a variety of health issues, not just Fibromyalgia. Another good spot to try is Patients At Heart. For Canadians, this link takes you to the Health Canada Clinical Trials website.

Advocacy

Another area where I’m seeing hope and miracles is in Patient Advocacy. This is a fast growing area where Patients become involved as authorities in their lived experience and work together with Health Care Partners to make changes in how health care is delivered.

One of the largest national organizations in Advocacy is WEGO Health. WEGO Health works with Patients in a wide variety of areas, offering opportunties to share you stories and help to impact change in a number of different ways.

They highlight a number of different annual conferences that take place in North America, and provide opportunities for you to share your story and get involved in various projects.

Patient Advocacy at an organizational level is becoming extremely important as well. If you want to be involved, simply contact the health organization of your choice, and ask them how you can become a Patient Advocate.

Volunteering your time to share your health story and help others is a great way to give back, beyond simply “making a donation”. Financial help is always needed and appreciated, but you can make a real difference as well in sharing your experiences.

Volunteering

Speaking of volunteering, this is an activity that has given me the greatest joy since becoming disabled. I do volunteer work for a group in BC, Canada called the Patient Voices Network, where I act as a Patient Advocate for a variety of Health Care initiatives.

I currently sit on 5 health-related committees,. Two are with the BC Emergency Medicine Network. Another is a Surgical Quality Improvement committee and another committee is devoted to ensuring Quality Control for all the Laboratories on Vancouver Island, BC.

Finally, I am a member of the Oversight & Advisory Committee for the Patient Voices Network, a role I’ve held for 3 years now. We oversee the activities of PVN and ensure that Patients are getting opportunities to share their voices in making change in health care.

I have also recently been working on becoming a Coach for PainBC.ca, allowing me to work directly with people with Chronic Pain and helping them find solutions for situations in their lives that they require some guidance with. I expect that work to start in 2020 when my training is complete in mid-December.

These volunteer opportunities allow me to give back to the community in a variety of ways while still taking care of my health. I devote approximately 20 hours a month to all of these committees which is manageable without overdoing it.

I love the variety of experiences I get to be involved in, the people I work with (surgeons, Government officials, other patients, etc.) and the opportunity to stretch my wings and try new things beyond my day to day life.

I’ve even been sponsored to travel to various conferences and to take courses such as the San’yas Indigenous Cultural Training.

I share this with you to show you that even if your health isn’t the greatest, you can still participate in volunteering in ways that make a difference.

Another volunteer suggestion is this: if you are a crafter, find out if your local hospital has need for knitted or crocheted items and take on the challenge. Blankets, baby items and more are often for sale in the Hospital Gift Shops and you can have a real impact on someone’s life with this kind of giving.

I know I’ve been very comforted in times in the hospital when I’ve been provided with a beautifully created blanket!

Season of Hope

I trust you are getting a sense of the hope and miracles I started this post with. There is so much potential in our lives even if we are disabled by pain and our physical and/or mental illnesses.

We must let go of the old ways of thinking that our good days are behind us, and start celebrating the wonderful things we have yet to accomplish.

Think about what you’re good at and find a way to incorporate it back into your life. What makes you smile? What makes your heart skip a beat? Find a way to bring that joy back into your life and see what changes.

Pain is easier to manage when you have good things to look forward to. Fatigue seems easier to handle when you’re active and busy, both mentally and physically.

I hope this post was helpful. I appreciate your comments below and look foward to sharing a magical Season with all of you! Remember…

PIN THIS!!

Interview October – Elisa Austin

Today we meet my final guest for Interview October, the wonderful Elisa Austin. Please join me in welcoming her!

Introduce yourself and tell us a bit about you…

I am a 50 year old, mother of eight and grandmother. I’m a photographer and writer.

One fascinating fact about me is:

I am still existing. 

Chronic illness(es)/disabilities I have… 

I have underactive thyroid (Hashimoto’s), Fibromyalgia, and IBS

My symptoms/condition began…

The thyroid condition was diagnosed in 1999 because I was just “off” and “dragging.” Fibromyalgia was diagnosed in 2004 although I believe symptoms began earlier.

My diagnosis process was… 

My doctor ruled out most things with blood tests and sent me to a rheumatologist. The rheumatologist ruled out RA and by process of elimination Fibromyalgia was diagnosed.

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

Knowing there is no cure and I will have to deal with the pain every day for the rest of my life.

A typical day for me involves…

Medication, necessary appointments or activities, and with luck some housework.

The one thing I cannot live without is…

It rotates through warm baths, heating pads, aromatherapy, family, exercise

Being ill/disabled has taught me…

That I’m stronger and more determined than I had originally thought. 

My support system is…

My family and an online group

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

I don’t even know. I no longer make plans or have dreams.

One positive of having a chronic illness/disability is…

I am more supportive of others

One final thing I want people to know is: 

I refuse to give up.

Interview October – Shantay Marsh Thompson

I have another great interview to share with you today…please meet Shantay Marsh Thompson!

Introduce yourself and tell us a bit about you…

My name is Shantay Marsh Thompson, and I am 42 years old. I have two grown kids that are working, and one is in college. I spend my time taking online classes since I am not able to work. I spend my time in the house the majority of the time because walking too much makes my back hurt. I do not go to stores to shop. I shop online or if it is something personal that I need, I will go to Dollar General so I can get in and out. My mother does the grocery shopping for me. 

One fascinating fact about me is:

That even though I am down with this illness, I continue to learn academically.  

Chronic illness(es)/disabilities I have…

I have Fibromyalgia with chronic back pain, depression, Neuralgia, Arthralgia, and Dyslipidemia. The pain in my back is worse. I have trouble sitting and standing for long periods.

My symptoms/condition began…

In 2013 after being diagnosed with endometriosis. After I had my procedure, I started hurting badly after a month. I went back to my gynecologist and asked him to please give me a hysterectomy because I needed to work. I had to wait four months before I could get the hysterectomy, so I continued to work in pain. After I had my hysterectomy in 2014, the pain was still there. I worked for about a month then had to quit my job because I could not stand nor sit for long periods. 

My diagnosis process was… 

Terrible. I went through several doctors in Tuscaloosa, AL. Nobody would give me the help that I needed. I cried every day because my pain was so bad. The medicine they gave me, such as Tramadol did not do anything for me. I had to move back to Mobile County to find me a doctor that could help me. I found one, and he gave me some medicine that would help me reduce the pain some. It was June 2015 before I got a diagnosis.

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

Dealing with the pain in my back. I have tried Fibromyalgia lotions and nothing seems to work good.

A typical day for me involves…

Laying in my bed watching tv or doing some schoolwork. I make myself go to the gym to at least once a week to do strength training and walking but I pay for it the next day. 

The one thing I cannot live without is…

My Lyrica. I have bad nerve pain so I take Lyrica. After my daughter turned 19 in April, my medicaid ended so I had to go without Lyrica for some weeks and I was in pain. 

Being ill/disabled has taught me…

How to appreciate life more and do not take anything for granted. I have worked since I graduated in 1995 and I never thought my working career would end in 2014.  

My support system is…

My one friend, my family, my fiancé, my church family, and the  FIBRO CONNECT Group.  

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

Get out the house and treat myself. 

One positive of having a chronic illness/disability is…

Being thankful that it is not a deadly illness.

One final thing I want people to know is: 

Fibromyalgia is real. I would not wish this pain on no one.

My Links

https://www.facebook.com/Health-Wellness-108684490547162/?view_public_for=108684490547162

Interview October – Jennifer Van Haitsma

I’m excited to share my next guest’s story with you…please meet Jennifer Van Haitsma!

Introduce yourself and tell us a bit about you…

Hi! My name is Jennifer Van Haitsma, the writer behind the blog Diffusing the Tension. I am 33 and I live in Northwest Indiana (about an hour from Chicago). I’m married to my love of 14 years, and we have 2 amazing children. (They are 4.5 and 2.5). In my spare time, I love to watch TV. I’m an avid binge watcher when I can. I especially love British period dramas, procedurals, and true crime documentaries. I also love to read. My goal is to read 35 books this year. I try to workout several days a week as well. 

One fascinating fact about me is:

I am terrified of heights. It is strange because I am not afraid of rollercoasters or airplane rides, but any other situation involving heights petrifies me. 

Chronic illness(es)/disabilities I have…

I live with bipolar disorder and chronic fatigue. Originally, I was diagnosed with depression, but my diagnosis changed about 10 years ago. 

My symptoms/condition began…

I began to exhibit symptoms of depression when I was 9 years old. I was a little more withdrawn at school and acted out a bit more at home, from what I can remember. 

My diagnosis process was… 

When I was 12 or 13 my mom took my to my first therapist. I remember not even wanting to talk to her at first. I had a lot of anger after my cousin’s death in 1995 (when my symptoms started) and really didn’t want to let a stranger climb the walls I had built inside. But ultimately, I was diagnosed with depression. In 2009, at age 23, I began to exhibit symptoms of mania (hyper productivity, irritability, and sabotaging relationships.) I sought treatment again, and in 2010 I was labeled bipolar 2 with rapid cycling mixed episodes. 

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

Definitely the effects it has on those around me. I sometimes lose my patience when it’s not necessary, and take it out on my husband and children, which makes me feel deeply ashamed. Another incredibly hard part is the fatigue. I am so tired that it is hard to stay awake past 7:30pm. 

A typical day for me involves…

Taking the day an hour at a time. I make the kids breakfast, then we do whatever we can to pass the time until lunch, etc. My fatigue makes it hard to stick to a schedule with them currently, as I often need to lie down for prolonged periods of time. 

The one thing I cannot live without is…

My phone! It is where I store my pictures, others’ phone numbers, others’ address, where I get my entertainment, where I keep my to do lists… My phone is the central hub of my daily activity. 

Being ill/disabled has taught me…

It had taught me resilience in a way that nothing else could. I have had to learn that each day is a fresh start, and it is possible to make the most of my situation. It has also taught me the power of speaking about my journey so that I can help others through theirs. 

My support system is…

My biggest supporters are my husband and parents. My husband is my best friend, and he is always patient with me when my illness gets bad, and always stays by my side. My parents provide a lot of support where my husband can’t. The girls get a lot of play time with their grandmas during the day when he is working and I need the help. 

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

It’s funny how hard it is to imagine myself without my illness! I think I would get in a long workout and then spend the day doing fun things with the girls. Maybe a trip to the zoo or a local amusement park, if the weather was good. 

One positive of having a chronic illness/disability is…

It helps you have more empathy for others who struggle. Before my diagnosis, I’m sure I often looked down on people with chronic illness. Now, I know they are just that: people. 

One final thing I want people to know is:

I am not my illness. I am so much more than just bipolar. I am a wife, a mom, a bookworm, a TV addict, a fitness nut, a friend, a sister, a daughter, a person. 

My links are:

Blog: www.diffusingthetension.com

Twitter: www.twitter.com/jvan3610

Facebook: www.facebook.com/diffusingthetension

Instagram: www.instagram.com/diffusing_the_tension

Pinterest: www.pinterest.com/diffusingthetensionblog

Interview October – Jamie Pirtle

It’s time to meet my next guest, the lovely Jamie Pirtle. Enjoy her story!

Introduce yourself and tell us a bit about you…


I was born blind in one eye and with a condition called nystagmus, where my eyes continually move.  The doctors are not sure why, but have suspicions that it could be because my mom smoked and had mono while pregnant.  

I grew up in the south eating meat, potatoes, gravy and biscuits almost every meal. My way of eating was pretty much carbs, carbs and more carbs. A meal without a potato was pretty much a sin.

As a teen, I started to eat junk food, including diet coke and snickers for lunch and the diagnoses started coming in during my late 20’s. 

Conditions you have been diagnosed with:

  • Mitral Valve Prolapse
  • High Cholesterol
  • Arthritis (in remission)
  • IBS 
  • Lupus (in remission)
  • Ankylosing spondylitis (in remission)
  • Endometriosis (had hysterectomy)
  • Thyroid cancer (removed and now take meds)

I can remember staying in the bed all day one Mother’s Day crying because I couldn’t play with my 2-year-old daughter or go see my mom.  The pain and unpredictable bowel movements were just too much.  

I didn’t get to take vacation from work because I used all my time off going to specialist and staying home sick.

I can’t wait to hear about YOUR progress!

At about age 49, I started following a health coach on Facebook and listening to him talk about how what we eat results in autoimmune diseases.  This coupled with returning from a cruise so sick I missed another week of work, I decided I had to do something 

I first went gluten free and started eliminating junk food and diet cokes. Next, I cut out all aspartame, high fructose corn syrup and most fried foods. This helped, but there was still something missing. 

Then I was diagnosed with thyroid cancer. When you hear these dreaded words, your world stops.  I remember sitting in the parking lot of the doctor’s office talking to my husband on the phone and saying, I have to figure out what is causing this. 

I started studying everything I could get my hands on and decided the only way to go was to eat whole, mostly organic foods. I also cut out as many carbs as I could and cut way back on sugar. 

After improving my lifestyle, I feel SO much better in my 50’s than I ever did in my 30’s and 40’s. I went from taking 9, yes NINE daily prescriptions to just ONE (my necessary thyroid medicine) and eliminated the pain associated with several autoimmune diseases.

One fascinating fact about me is:

I went back to school at age 53 and became a certified health coach so I can help others get healthy and not have to live in pain like I did.  I also beat cancer and plan to stay cancer free! 

My symptoms/condition began…

In my late 20’s. (born with the eyes) 

My diagnosis process was… 

Long and tedious. The doctors just kept telling me I was too stressed at work and I needed to learn to relax. I also knew something was wrong with my thyroid and it took almost 2 years for doctors to finally find the cancer after I insisted on a sonogram and biopsy. 

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

People think I am ignoring them when I cannot see them out of my bad eye or they think I’m drunk or high as my eyes move. When I was in school the teachers thought I was day dreaming because it was easier for me to focus on them by turning my head and creating a null point that made my eyes stop moving. It is also hard to do fun activities like bowling due to some joint pain from time to time. 

A typical day for me involves…

Eating healthy and making sure I drink lots of water, take my supplements, use essential oils and remember the food makes a HUGE difference in how I feel. I work a demanding manager job with a large aero defense company and have a side gig as a heath coach and blogger. 

The one thing I cannot live without is…

My glasses for sure!  But also, healthy foods and supplements – I take lots of supplements. 

Being ill/disabled has taught me…

That life is precious and we really are what we eat.  I have also learned not to push myself and to try to destress as much as possible. 

My support system is…

My husband, family and friends.  I have also found joy now in my health coaching clients.  It is such a great feeling to see them losing weight and regaining energy. 

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

Go watch a 3D movie! They don’t work for me with my bad eyes.  

One positive of having a chronic illness/disability is…

It has made me strong and made me a lifelong learner.  I can no longer rely on others to make medical decisions for me and research everything a doctor tells me. 

One final thing I want people to know is:

Food is a HUGE factor in your health and how you feel. Unfortunately, many doctors want to give you a pill and not educate you on the importance of good nutrition. 

My links are: 

Healthywithjamie.com

https://m.facebook.com/healthywithjamie/

https://www.instagram.com/healthywithjamie1/

https://www.facebook.com/groups/2109386845847472/?ref=share

https://www.linkedin.com/in/jamiehyatt1

Free recipe book with 23 gluten free and Keto friendly healthy recipes: 

https://healthywithjamie.com/free-recipe-book/#

Interview October – Jenny Jones

I’m delighted to introduce my next guest to you. This is Jenny Jones and here is her story:

Introduce yourself and tell us a bit about you…

I’m Jenny and I share my story of rare disease and chronic illness on my blog Life’s a Polyp. I have a Master’s in Social Work and provide behavioural health services to dialysis patients. 

One fascinating fact about me is:

 I started a research fund through National Organization for Rare Disorders (NORD) for the rare disease of Familial Adenomatous Polyposis (FAP). Life’s a Polyp shop has several designs across a variety of merchandise that helps to raise awareness of rare disease but also supports the FAP Research Fund through NORD.

Chronic illness(es)/disabilities I have…

I have two rare diseases – Familial Adenomatous Polyposis (FAP) and Short Bowel Syndrome (SBS). FAP is a hereditary, rare disease that causes 100s to 1000s of pre-cancerous polyps to develop in the colon as well as extracolonic manifestations. SBS results when too much of the colon and even the small intestine is damaged or removed resulting in malabsorption of nutrients and fluids that is often complicated by severe diarrhea and dehydration.

My symptoms/condition began…

FAP is a genetic disease that I was born with but I also developed Short Bowel Syndrome due to my colon and part of my small intestine being removed as part of my treatment for FAP.

My diagnosis process was… 

I was diagnosed when I was about 8 years old after having stomach pain from a pre-ulcerous condition which led my GI doctor to complete genetic testing due to my family history of FAP. It was difficult to obtain a referral to a GI doctor as my PCP told my parents I was “just a whiny child” and nothing was wrong with me.

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

Never knowing what the day will be like or what the future will be. Working to be able to support myself is my primary goal in life and the best physical health years of my life are behind me now. I am terrified of the day that I will no longer be able to work and support myself. 

A typical day for me involves…

I work full time – 5 days a week but after work and on the weekends I require a lot of resting time to recuperate from the work week so that I may work the next week. Sometimes I enjoy outings with friends and family but I have to balance all of my activities with rest periods in order to continue functioning.

The one thing I cannot live without is…

My parents – they are my foundation and support in life. They help keep me going while providing assistance as needed to care for myself. I would be lost without them. 

Being ill/disabled has taught me…

 The importance of taking physical and emotional care of myself and advocating for myself so that I may continue to maintain optimal functioning ability.

My support system is…

My parents and a few select friends make up my support system. I also receive encouragement from online groups for FAP and SBS.

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

Probably spend the day engaging in all the activities I typically am unable to complete or am leery about completing due to my SBS symptoms.

One positive of having a chronic illness/disability is…

Chronic illness teaches us perseverance and empathy – both qualities that are important in caring for ourselves and understanding others.

One final thing I want people to know is: 

Chronic illness is hard to live with – both physically and psychologically. Counseling can be a key component of learning to accept and cope with chronic illness in a healthy way. It is also essential to be proactive in one’s care to ensure the best treatment possible from all medical providers.

My links are:

www.LifesaPolyp.BlogSpot.com

www.Youtube.com/LifesaPolyp

www.cafepress.com/lifesapolyp

www.facebook.com/lifesapolyp

www.twitter.com/lifesapolyp

www.instagram.com/lifesapolyp

www.pinterest.com/lifesapolyp