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 I was a little more withdrawn at school and acted out a bit more at home, from what I can remember.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

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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

Interview October – Aleisha Crabb

It’s time to introduce my next guest, the vibrant Miss Aleisha Crabb. I’m delighted to share her story here!

Introduce yourself and tell us a bit about you…

My name is Aleisha & I live in Canberra, Australia. I was born in a country town in New South Wales called Dubbo & my parents moved to Canberra when I was 1 year old.

I am a Nurse, and I work in Drug & Alcohol. My work has given me an amazing insight into human nature, and the complexities surrounding chronic pain, opioid use & addictions. I absolutely love my job & cannot imagine working anywhere better considering my own life experience of chronic pain.

One fascinating fact about me is:

I have a ridiculous good memory for movie/TV show quotes. I remember the most bizarrely un-memorable lines from movies & shows, haha. 

Chronic illness(es)/disabilities I have…

  • Psoriatic Arthritis (with associated Enthesitis & Bursitis)
  • Osteoarthritis
  • Sleep Apnea
  • Polycystic Ovary Syndrome
  • Idiopathic Intercranial Hypertension
  • Trigeminal Neuralgia
  • Generalised Anxiety Disorder

My symptoms/condition began…

I injured my knee in my first year of nursing. That injury seems to have been the catalyst for triggering the onslaught of my Psoriatic Arthritis.

My diagnosis process was…

Tedious. The GP I was seeing when I first injured my knee was what I now know to be quite lazy, and was very disinterested in holistic care.

It took a very long time for him to refer me to a Rheumatologist, but when I eventually was, I was triaged as urgent & was seen in weeks. Some people have had to wait over 12 months to get into them, so for that I am very grateful.

From there I was diagnosed first as Undifferentiated Spondyloarthropathy, and as my symptoms progressed, and more specific symptoms presented, I was eventually diagnosed with Psoriatic Arthritis.

The majority of my other conditions were more easily & quickly diagnosed.

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

The fatigue. Pain is something I have learned to manage, but the severely depleted energy levels is not something I have ever been able to successfully become accustomed to.

A typical day for me involves…

  • Wake up around 730am.
  • Medication and breakfast (if I am feeling up to it, sometimes I am too tired/nauseous).
  • Feed the cat. He will look at me forlornly (and disdainfully) if I don’t 😉
  • Work is from 9am – 530pm. (I have had my start time adjusted to 9am from 830am so that I am able to manage morning stiffness from my PsA. This gives me an extra 1hour at home due to peak hour traffic!)
  • Home for dinner around 6pm. Sometimes I have cooked something, othertimes it is takeaway or a pre-delivered meal service like Lite & Easy.
  • Medications around 7pm as one is to prepare for sleep.
  • Bed at 9pm after a shower usually. I do a nighttime meditation to help sleep.

The one thing I cannot live without is…

 My cat. He is my ever present comfort, amusement & joy throughout the trials & tribulations of chronic illness. 

Being ill/disabled has taught me…

To slow down & enjoy life. I am so relaxed about life & what I am able to enjoy now.

My support system is…

My family & close friends. They are essential to my emotional wellbeing 😊 

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

Walk up a mountain to have a picnic, visit a remote Indigenous site in Australia that requires lots of walking to access & camp under the stars without my CPAP machine! 

One positive of having a chronic illness/disability is…

The people I have connected with as a result 😊 . The connections I have made since becoming chronically ill have become incredibly important and special to me, and I have made some lifelong friends.

Having people in your life who understand the difficulties associated with chronic illnesses and disabilities, can relate to the challenges and frustrations you face every day and truly care about your wellbeing can never be underestimated.

One final thing I want people to know is:

Its OK not to be OK.

The biggest challenge for me has been slowing down & how difficult that has been at times. I was always an active person before I became unwell; always taking on lots of challenges. Now, I have to drastically limit my activities in any given day as overactivity can bring on severe flares. This was a huge change for me & emotionally I was quite overwhelmed & became very anxious.

I want all people to know it is ALWAYS OK to tell others that they need more support if they are finding the emotional toll of their chronic illness/disabilities too hard to manage on their own.

My links are:

https://acrabbycripple.wordpress.com/

Interview October – Keiran Potter

It’s time to meet my next guest, the fabulous Keiran Potter! I’m excited about what he has to share!

Keiran Potter

Introduce yourself and tell us a bit about you…

Hello, my name is Keiran Potter, I am 21 years old and I am from the South West of England. I am currently studying English Literature and Creative Writing at University and hope to pursue a career as a writer if all goes to plan. But you know what they say, best laid plans of mice and men often go awry. 

One fascinating fact about me is:

Not sure how fascinating any of my facts are but I am 22 this month and still often get mistaken for a 12 year old at my local shops. Oh and I’m gay, not fascinating but definitely a fact. 

Chronic illness(es)/disabilities I have…

Celiac Disease and Various Mental Health problems but for the sake of this interview I’ll focus on the former

My symptoms/condition began…

The symptoms of Celiac were present for an awful long time before I recognised them as something that could be potentially sinister. The stomach pain, migraines and bleeding had been such a regular thing for me, that it became the norm and I failed to question it for a long time. So I’d say as long as I remember I have had the issue but it wasn’t further explored until May 2018 

My diagnosis process was… 

 I had to have blood tests and several other samples. Celiac Disease can share some symptoms with other serious conditions like intestinal cancers, so my doctor was pretty concerned. Once they came back I got referred to a specialist on a 9 month waiting list. In the interim they told me to research about Celiac Disease and cut out Gluten from my diet. They failed to tell me that by doing this it would also put other aspects of my health at risk. Such as my heart. 

When I was referred I was then asked to eat Gluten again after being gluten-free for 9 months, in order to have an upper endoscopy and biopsy of my intestines. 

So all of my symptoms got more aggressive and I was in constant pain as my body had began healing in the 9 months that I had known about my potential diagnosis 

The first biopsy was inconclusive. I had to wait another 3 months and get another one done. It was quite a hellish experience to be honest but I finally got the 100% confirmation of the disease. Which in many ways was a blessing as I finally had some answers 

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

The constant vigilance and endless fatigue and stomach pain. Even when doing everything you should be doing. Sometimes you have issues for no apparent reason and there is literally no answer to appease your concerns or pain. 

A typical day for me involves…

 A lot of thinking ahead about the risks of everyday living. Such as eating or spending the day out of the house in an unfamiliar place. A lot of time spent on or near a toilet. University, I study English and Creative Writing. Lots of medication but thankfully a lot of laughs 

The one thing I cannot live without is…

 Not really a thing but my support system and the people who help and love me the most. I quite literally would not be alive if it wasn’t for them. 

Being ill/disabled has taught me…

To value every aspect of your life for what it is. You never know when those simple joys may be taken from you. It has also made me more appreciative of health in general. Our bodies are not as indestructible as we may like to think sometimes  

My support system is…

My Family, my mum specifically. I don’t think I would show up to half of the appointments I have if it wasn’t for her dragging me there by the ear. I’m very grateful for all the help and care she gives me 

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

 Eat some Chinese food and go do something productive and just enjoy the day without the illness. I would take advantage of some of the freedoms that I feel I don’t have as much access too since my illnesses have truly taken a hold on my life

One positive of having a chronic illness/disability is…

I think one positive is how you can then use your knowledge of your own body and conditions to educate and help others. There is also a sense of community instantly when you find people who struggle with the same illnesses and experiences. It’s important that all voices are heard, so I’m glad interviews like this amplify the voices of disabled or chronically ill people. 

One final thing I want people to know is:

 Only because a person may not look ill, it doesn’t mean they are not struggling everyday to live their life as normally as possible. Always be kind to everyone you meet as even if you can’t physically see it, that person could be in pain and/ or mental strife. A smile could always brighten up their day 

My links are:

Https://KeiranCrying.com/blog

Instagram.com/keirancrying

Interview October – Melissa Temple

I’m pleased to announce that Melissa Temple is my next guest for Interview October. Let’s read what this lovely lady has to say:

Introduce yourself and tell us a bit about you… 

Hi. My name is Melissa Temple. I am 40 years old. I am a disability, fibromyalgia, chronic illness and Disney blogger. I am married and have 1 child. I had a blog called HappyFibroGirl but wanted to do more than fibro. So with my husband of 19 years we started Disabled Disney. 

Chronic illness(es)/disabilities I have…

Osteo-Arthritis, Fibromyalgia, Depression, Anxiety, Type 2 Diabetes, Asthma, Endometriosis.

My symptoms/condition began…

I had arthritis symptoms in my 20’s but wasn’t diagnosed until my 30’s. My fibro symptoms really started after having knee surgery and a hysterectomy from severe endometriosis. 

My diagnosis process was…

I went to my primary care and told her about all my pain. She said she was pretty sure I had fibromyalgia. She sent me to pain management. The pain management doctor agreed. 

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

Not being able to do everything I used to be able to do. I can’t hardly walk or stand anymore. I used to dance, hike, swim, and do so many physical things! I used to be a Certified Nursing Assistant (CNA) but I had to stop because I couldn’t stand anymore for long periods.

A typical day for me involves… 

Medications when I wake up..doing some posting on social media for my blog..and eating breakfast…then a nap…then more meds and some more work on my blog and lunch…then another nap…then some more work on the blog if I’m feeling up to it…then more meds and dinner….then watching tv until bed….then more meds…then bed…

The one thing I cannot live without is… 

My husband, my cell phone and my muscle relaxers. My husband is my reason to keep pushing and going, he is my light in the dark and the love of my life. My cell phone is where I do a lot of my blog stuff. It also keeps me connected to the outside world when I am very isolated at home. My muscled relaxers…if I don’t take them I can’t move. 

Being ill/disabled has taught me… 

Really enjoy everything because you may not always have it and you won’t know your about to lose it!

What advice would I give someone recently diagnosed…

Be an advocate for yourself. Yes the doctors have gone to school but you know yourself and you have to live your life…they don’t. 

My support system is…

My hubby, my daughter and all my fibro friends on Facebook and my blogger friends on Twitter.

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

I would dance, go hiking, run and jump…I would go walking around a mall….I would volunteer and be out!

One positive of having a chronic illness/disability is…

It really shows you who cares about you. 

My social media links are:

Website/blog: www.disableddisney.com

Instagram: www.instagram.com/disableddisney

Twitter: www.twitter.com/disableddisney

Pinterest: www.pinterest.com/disableddisney

Facebook: www.facebook.com/disableddisney

Why I Blog (About Fibromyalgia, Chronic Pain and Invisible Illness)

I have been blogging for a couple of years now and recently someone asked me “why do you blog? What do you get out of it?”

It was a good question, so I thought I’d write a post about my reasons for blogging and what I hope to achieve with this blog site

thought-2123971_640
Image by TeroVesalainen from Pixabay

Education

When I first started to blog, I wrote about my total hip replacement because I’d had problems trying to find first-person accounts of undergoing that particular type of surgery, especially for someone who was in their 50’s. Hip replacements seem to be done on mostly older folks (in their 70’s or older) but rarely on the younger set, unless you’ve been born with a hip problem or have suffered a devastating injury. 

Because I was only 54 when I had my hip replacement done, I was considered “unusual” by my surgeon (and yes, I’m sure he meant my hip only and not me in general!) so trying to find others in the same position was difficult. I had read enough websites to understand the technical side of the surgery, but I wanted to find out what it was like to actually have the surgery and then recuperate and go on with life. 

Since I was unable to find a lot of good information, I decided to write about my own experiences, so others in my position might be able to find what I was looking for. Once I’d written about that, it seemed natural to go on and talk about other health issues I live with and how they impact my life. From there, the blog site grew organically and became what it is now – a place for articles and posts about Fibromyalgia, Chronic Pain, Chronic Fatigue and Invisible Illnesses, such as Lupus, MS, Arthritis, POTs, Ehler’s Danlos Syndrome and more. 

The goal has been achieved and I’m proud of what I’ve been able to create with this site. I hope others feel the same. 

Compassion

Living with a Chronic Illness is hard work. People with Chronic Pain and Invisible Illness are often left feeling isolated, and when you find someone online who speaks your language, it can be like finding an oasis in the desert. 

In addition to educating people, I wanted this blog site to be a place where comments could be left freely, allowing people the opportunity to share what’s going on in their lives in a safe way. When readers have identified with a particular post, their comments reflect their own lives and situations and I take that seriously. I often respond back, not always in the comment section, but in-person to what they’ve said.

My responsibility as a writer is to ensure that not only am I educating people but I’m giving them some hope as well. Life with Chronic Illness is painful physically and mentally and when you find a spot online that reflects your own thoughts and ideas and connects with you, there’s a genuine freeing sensation. You feel less alone in the world and you realize that other people “get it”. Being understood is an amazing feeling and us Chronic Pain Warriors don’t always feel understood. 

volunteers-2653997_640
Image by Gerd Altmann from Pixabay

Volunteering

In many ways, I see writing this blog as another form of volunteering that I do. My focus on health and wellbeing extends beyond this blog site, but I consider the site to be one of service to others. 

Like my other volunteer roles, I receive no compensation for producing this site, with the exception of any money I might make with Affiliate Marketing (more about that in a minute). I do this purely because I want to help others who are in Chronic Pain and who feel lost and alone and in need of information that might help make their lives better. 

My other volunteer roles include committee work for Surgical Quality Improvement, improving Clinical Resources for Patients such as updating Patient Information Sheets received when you are discharged from an ER and Laboratory Quality Control to ensure that Patients are receiving the best care possible when they are providing lab samples for doctor-ordered tests. I also sit on a Provincial Measurement Working Group that is creating a survey for Patients in British Columbia, Canada to ensure that their care received has been the best it can be. 

These roles, together with this blog, give me ample ways to help others, and that brings a lot of happiness to my soul. 

 

me-2078027_640
Image by John Hain from Pixabay

Helping Myself

My final reason for blogging is purely selfish…I do this for me as well. It’s therapeutic to be able to write about what’s new in health care, or what I’ve been thinking about a certain subject. I love being able to tackle controversial subjects or bring emotional issues to light, such as intimacy when you are Chronically Ill. 

I consider myself lucky to be in a position where I can have some influence over others and perhaps introduce them to a treatment they haven’t heard of before. There’s nothing quite as satisfying as hearing back from someone who says “you changed my life” or “I really needed to read this”. It makes up for the research, the typing on days when my hands hurt and the work of coming up with new topics that will be of interest.

If you are a blogger, you understand what I’m talking about. If you are a reader, just let me say that having responsibility for you and what I’m producing for you is an honour I don’t take lightly. I want to make sure you’re getting information that benefits you and your health because I know what it’s like to live with Chronic Illness and I know the types of things that I’d like to read and learn from. 

Thank you for allowing me to share these thoughts with you. I appreciate your comments below, or you can always write to me using the Contact Form. 

I do this because I love it. I love sharing and helping others and I hope I’m able to continue for a long time to come. Remember…

There Is Always Hope

A Positivity Pause (Quotes To Help Your Frame Of Mind)

When you live with Chronic Pain, you often find yourself juggling various mood swings. It’s hard to stay positive when you’re in pain all the time, so here are some quotes to help you stay on track or to turn to when you need to be uplifted.

Thanks to Success.com for the following:

1. Keep your face to the sunshine and you cannot see a shadow.”

— Helen Keller


2. “Once you replace negative thoughts with positive ones, you’ll start having positive results.”

— Willie Nelson


3. “Yesterday is not ours to recover, but tomorrow is ours to win or lose.”

— Lyndon B. Johnson


4. “In order to carry a positive action we must develop here a positive vision.”

— Dalai Lama


5. “I always like to look on the optimistic side of life, but I am realistic enough to know that life is a complex matter.”

— Walt Disney


6. “Positive thinking will let you do everything better than negative thinking will.”

— Zig Ziglar


7. “Pessimism leads to weakness, optimism to power.”

— William James


8. “You can’t make positive choices for the rest of your life without an environment that makes those choices easy, natural, and enjoyable.”

— Deepak Chopra


9. “The thing that lies at the foundation of positive change, the way I see it, is service to a fellow human being.”

— Lee lacocca


10. “Positive thinking is more than just a tagline. It changes the way we behave. And I firmly believe that when I am positive, it not only makes me better, but it also makes those around me better.”

— Harvey Mackay


11. “In every day, there are 1,440 minutes. That means we have 1,440 daily opportunities to make a positive impact.”

— Les Brown


12. “I’m a very positive thinker, and I think that is what helps me the most in difficult moments.”

— Roger Federer


13. “Perpetual optimism is a force multiplier.”

— Colin Powell


14. “Attitude is a little thing that makes a big difference.”

— Winston Churchill


15. “Let us rise up and be thankful, for if we didn’t learn a lot today, at least we learned a little, and if we didn’t learn a little, at least we didn’t get sick, and if we got sick, at least we didn’t die; so let us all be thankful.”

— Buddha

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Quotes for Daily Living from Goodreads

“Think before you speak. Read before you think.”
― Fran Lebowitz, The Fran Lebowitz Reader
“Keep your face always toward the sunshine – and shadows will fall behind you.” 
― Walt Whitman
“Write it on your heart that every day is the best day in the year.”
― Ralph Waldo Emerson
“Do not pray for an easy life, pray for the strength to endure a difficult one”
― Bruce Lee
“Even though you may want to move forward in your life, you may have one foot on the brakes. In order to be free, we must learn how to let go. Release the hurt. Release the fear. Refuse to entertain your old pain. The energy it takes to hang onto the past is holding you back from a new life. What is it you would let go of today?”
― Mary Manin Morrissey
“To handle yourself, use your head; to handle others, use your heart.”
― Eleanor Roosevelt
“Everything in moderation, including moderation.”
― Oscar Wilde
“Go placidly amid the noise and the haste, and remember what peace there may be in silence. As far as possible without surrender, be on good terms with all persons. Speak your truth quietly and clearly, and listen to others, even the dull and ignorant; they too have their story. Be yourself. Especially do not feign affection. Neither be cynical about love – for in the face of all aridity and disenchantment it is perennial as the grass. Take kindly the counsel of the years, gracefully surrendering the things of youth. Nurture strength of spirit to shield you from misfortune. But do not distress yourself with imaginings. Many fears are born of fatigue and loneliness. Beyond a wholesome discipline, be gentle with yourself. You are a child of the universe no less than the trees and the stars; you have a right to be here. And whether or not it is clear to you, no doubt the universe is unfolding as it should. Therefore be at peace with God, whatever you conceive Him to be, and whatever your labours and aspirations, in the noisy confusion of life keep peace with your soul. With all its sham, drudgery and broken dreams, it is still a beautiful world.”
― Max Ehrmann, Desiderata: A Poem for a Way of Life
“Be more concerned with your character than your reputation, because your character is what you really are, while your reputation is merely what others think you are.”
― John Wooden
“Dream as if you will live forever; Live as if you will die today.”
― James Dean
“Do all the good you can,
By all the means you can,
In all the ways you can,
In all the places you can,
At all the times you can,
To all the people you can,
As long as ever you can.”
― John Wesley
“Always acknowledge a fault. This will throw those in authority off their guard and give you an opportunity to commit more.”
― Mark Twain
“The way to happiness: Keep your heart free from hate, your mind from worry. Live simply, expect little, give much. Scatter sunshine, forget self, think of others. Try this for a week and you will be surprised.”
― Norman Vincent Peale, The Power of Positive Thinking
“The past is behind, learn from it. The future is ahead, prepare for it. The present is here, live it.”
― Thomas S. Monson
“Run mad as often as you choose, but do not faint!”
― Jane Austen, Love and Friendship
“Sit in a room and read–and read and read. And read the right books by the right people. Your mind is brought onto that level, and you have a nice, mild, slow-burning rapture all the time.”
― Joseph Campbell, The Power of Myth
“Be grateful, be smart, be clean, be true, be humble, be prayerful.”
“Never tell your problems to anyone…20% don’t care and the other 80% are glad you have them.”
― Lou Holtz
“Don’t count the days, make the days count.”
― Muhammad Ali
“Live simply, love generously, care deeply, speak kindly, leave the rest to God.”
― Ronald Reagan
“May I share with you a formula that in my judgment will help you and help me to journey well through mortality… First, fill your mind with truth; second, fill your life with service; and third, fill your heart with love.”
― Thomas S. Monson
“Meditate.
Live purely. Be quiet.
Do your work with mastery.
Like the moon, come out
from behind the clouds!
Shine”
― Siddhārtha Gautama
“In dwelling, live close to the ground. In thinking, keep to the simple. In conflict, be fair and generous. In governing, don’t try to control. In work, do what you enjoy. In family life, be completely present.”
― Lao Tzu
“Being yourself is all it takes. If you want to impress someone don’t be someone else just be yourself.”
― Selena Gomez
“The most important thing to do if you find yourself in a hole is to stop digging.”
― Warren Buffett
“Never lie in bed at night asking yourself questions you can’t answer.”
― Charles M. Schulz
“Before you speak, listen.
Before you write, think.
Before you spend, earn.
Before you invest, investigate.
Before you criticize, wait.
Before you pray, forgive.
Before you quit, try.
Before you retire, save.
Before you die, give.”
― William Arthur Ward
“Think in the morning. Act in the noon. Eat in the evening. Sleep in the night.”
― William Blake, The Marriage of Heaven and Hell
“Breathe properly. Stay curious. And eat your beets.”
― Tom Robbins, Jitterbug Perfume
“It is foolish to tear one’s hair in grief, as though sorrow would be made less by baldness.”
― Marcus Tullius Cicero
There Is Always Hope

The Creative Side Of Chronic Pain

Some of the most creative people in the world live with Chronic Pain or some type of health challenge. I know, because I’ve gathered a bunch of them together to showcase their talents, right here. Read on!

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Meet Julianne Ryan

Julianne is currently working as an art mentor for an artist with disabilities whilst volunteering her time to Mixed Palette Inc. an inclusive art group in Rockingham.

Julianne uses natural substrates, wood panels and recycled papers and works mostly with watercolour, ink and pencil to create depictions of feelings and experiences. Her latest works are multilayered with overlapping images that explore her experiences of chronic illness while correspondingly relating to her connection with nature. She also produces digital drawings, illustrations of birds and poetry that link to her memories, experiences and to current wellness practices.

She is currently working towards her first solo exhibition to be held at Forest Heritage Centre Gallery, Dwellingup in July/August.

Here are four samples of her amazing art:

JulianneRyan

Art created with Inktense pencil, ink and watercolour on wood panel

Undergrowth series: Inktense pencil, ink and watercolour on wood panel

Julianne can be contacted via Instagram and through the website at Living With Functional Neurological Disorder . She is a proud supporter of this particular charity.

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Meet Christalle Bodiford

Christalle-Michael-Schaffer-Photography-8

Christalle Bodiford is an artist, advocate, writer, and adventure seeker. As an entrepreneur diagnosed with epilepsy, Christalle brings a unique perspective of empowerment that inspires others to embrace a positive mindset and live with purpose. When she’s not writing or advocating, Christalle enjoys puppy snuggles with her scruffy terrier and outdoor adventures with her husband.

Christalle was recently featured on this blog as one of my Interviewees for Interview April. Read more about her here.

Here are some examples of the work she’s done on her incredible book:

Woosah Warrior Mockup

Christalle has provided this next page as one you can print out and colour:

Woosah Warrior Cover Coloring Page-01

For more information, please visit Christalle at her website. She supports the Epilepsy Foundation which can be reached here.

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Meet deni

deni weber is a 67-year-old psychologist turned artist after major traumatic life events triggered multiple chronic illnesses.  A Christ-follower, she uses her God-given gifts of creativity to help and encourage others as well as provide healing for herself, while recovering from limbic system traumas. Formerly bed-ridden for years, she is now finding healing using neuroplasticity techniques – creativity being a major healing component.  She is an artist, singer-songwriter, and writer having several unpublished novels and screenplays hiding in a drawer. Giving credit to God, she declares her works are, “by His grace, and for His glory.”

Here are some examples of deni’s work:

“Welcome to My Garden Series – Purple Butterflies” Acrylics on Linen Canvas – 2.5” x 3.5”

 

“Forgiven” Graphite on 140# Cold Press, 12” x 12”

 

“Hidden in the Woods” PanPastel on Colourfix Board 2.5” x 3.5”

 

Please visit deni on her website to view more of her work. She’s also a huge supporter of The Flute Maker Ministries.

 

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Meet Alisha

Alisha Nurse is a trained broadcast journalist, and enjoys sharing stories. She lives with various chronic health problems including fibromyalgia, depression, anxiety, complex post traumatic stress disorder and borderline personality disorder. These often challenge her creativity but they’ve also been her greatest inspiration to tell stories that make a difference.

She is interested in stories that change the narrative about ethnic minorities, chronically unwell people and those often cast on the sidelines.

Her favourite things include cheese, curries, and interacting with the world around her.

She has graciously allowed me to share one of her poems here:

~~~~~~

I do not recognise myself standing in the many shadows of you.
You, towering, all-consuming, ever present but hidden away,
in plain sight.
Yet I feel you in every part of me. Trying to become me.

Not all monsters lurk like you.
Once awakened, you thrive, clamour, steal, reverberate …through the length and breath of my mortal body,
Silently leaving deadly, indelible traces of your mark, like on a cracked egg, ready to fall apart,
any, anytime now, but still holding itself together as the lines spread and spread,
Until I am finally broken.

Your crack lines emerge in places impossible.
From earthen shell to the soul and heartland of me.
Breaking, smashing, pillaging anything and everything, until I am nothing of my former self; nothing of possible Me(s).

But even broken things can be beautiful.
With floods of tears and streams of blood I shall, I shall put me back together again.
I emerge not the ‘Me’ that once was, was to be or had been imagined with dreams for the future.

I rise as someone, something else entirely–Pained but persevering. Flawed but fluid. Broken but beautiful and believing that I shall conquer.
I am and will be the ‘Me’ that never was imagined.
I am the ‘Me’ that’s emerged from the ashes of pain.
I will not fit your cardboard cutouts or your nicely stencilled stereotypes.

And I am not sorry.

To survive, I change. Constantly.
As the monster morphs so will I – imperfect still, but ready to give bloody hell in all battles to come.

~~~~~

Wow! That’s powerful. To find out more about Alisha, visit her website. She blogs about overcoming chronic illness on www.theinvisiblef.com and shares other fictional works on www.alishanurse.com

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Meet Chrissy Joy Bell

chrissy

Meet Chrissy Joy Bell. She lives in Columbus, Oh, USA. and says “I’m married to an awesome guy named Ryan. I received a fibromyalgia diagnosis in 2008 after a serious illness, and I live with chronic migraine. I own a hand made business where I create all sorts of fun and snuggly things out of yarn. I originally used creativity to handle the changes that were happening in my life. Now it gives me a serious sense of fulfillment to know “Hey, I made that!””

Most recently Chrissy self published a coloring book of hand drawn mandalas, a project she began for her own enjoyment that others are now also sharing with her. My hopes for the future are to continue making, and to help others understand their journey in life and with chronic illness.

Here are some examples of the different work that Chrissy has done: 

Can with crocheted

Can Cozy

Crocheted animal

A Favourite Friend

Black & White Mandala

Mandala designed by Chrissy

See more of Chrissy’s work at The Pink Woobie or learn more about her at Find Joy Be Well

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Meet Sergio Garcia

Sergio_Garcia

Description: Sergio Garcia is a Writer at Travelevil.com , he is a music, travel and writing lover, can’t stop thinking about the new article to publish. Sergio believes that travel can heal both soul and body, this is why he joined Travelevil community where both writers and readers share their stories and exchange knowledge about the various travel experience they had in the past.
Beside Blogging and Marketing, Sergio is a certified scuba diver, another world that a lot of people need to discover and enjoy.

Here are some of his favourite photos to share:

light_blue_hour_surface_reflectionpeople_permission_candidphotography_tip_diferent_angles2photography_tip_human_element_lighting

You can reach Sergio via email at travelevil.com@gmail.com 

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I am in serious awe of these talented people! I hope you are too! Please feel free to leave your comments about their work as each of them will be happy to answer questions as well. 

And what about you? How do you show your creativity, whether you live with Chronic Illness or not?  Share in the comments and tell us what you like to do. 

If you’d like to be considered for a future post showcasing even more talent, please fill out the contact form found here and let me know. I’ll be in touch to discuss a second post for later in the year. 

Thank you for joining me. Remember…

There is always hope

It’s Time To Talk About Spiritual Beliefs

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If you live with Chronic Pain or an Invisible Illness, has someone ever said to you “I’ll pray for you” or “You’re in my prayers”?  What does that mean to you? Do you have Spiritual Beliefs that make those prayers easy to accept? Do you believe in a Higher Power? In God? Or do you believe that when we die, that’s it…there is nothing afterwards. No afterlife, no Heaven or Hell, no God of any type?

I am a Christ Follower. I call myself that because too many things have been done by “Christians” in the name of Christ that taint the Holy name, and I refuse to be associated with them. I’d rather try to live my life the way Christ modelled it, and so being a Christ Follower is a much better way of describing my religious leanings. I believe that He is the only way to Eternal Life and I believe in Heaven and Hell. I don’t talk about this often and almost never in public, but when I say I’ll be praying for you, trust me…I WILL be praying for you.

I also believe that everyone has a right to their own beliefs, and I will never push my beliefs on anyone else. If you want to talk about God with me, I’m happy to do so, but I won’t raise the subject first. It’s not that I’m shy or embarrassed about God, but more that I’m respectful of others, and I prefer to wait to discuss religion until the subject is brought up by others first. I am definitely NOT an Evangelist.

So, why am I talking about it now? Well, the reason is that the question came up in a Chronic Pain forum I belong to when someone asked the forum members “do you have Spiritual beliefs that help you cope?”.

I haven’t seen anyone else answer yet, but I wanted to share my response. Yes, I have a God who loves me dearly and who has a plan for my life. Right now, that plan includes me living with Chronic Pain and Chronic Fatigue from the many conditions I deal with. I think the plan includes these illnesses because He’s using me to help others, through my blog and my volunteer and advocacy work. What type of volunteer and advocacy work do I do?

I work as a Patient Advocate for a group in BC, Canada where I live called the Patient Voices Network.

Patient Partner Logo, Patient Voices Network

Anyone in the Province can join, and it’s designed for ordinary people to have a say in how Health Care is delivered in the Province. Through my involvement, I am currently sitting on 4 committees, plus assisting on a project involving virtual reality and connecting with your doctor, and helping one Provincial Working Group where we are designing a survey to measure Patient satisfaction with their experiences in the Emergency Department and subsequent transfer to an Acute Ward before going home.

The committees I sit on do such work as:

  • Laboratory Quality Control
  • Updating Patient Information Sheets for discharge from Emergency Rooms
  • Quality Improvement Measures for Surgeons
  • The Oversight & Advisory Committee for the Patient Voices Network

I also had the honour of being part of The 2017 Canadian Guideline for Opioids for Chronic Non-Cancer Pain. I recently took part in a “Research for Canadian Anesthesiology” conference and I’m hoping to soon be a Facilitator of a Pain Management Support group. 

So as you can see, my work is wide and varied and brings me together with many different people on a regular basis. I’m often asked “why” do I do what I do. Why do I volunteer my time to all these causes when my own health is so compromised and the truth is, it’s complicated.

I get a lot out of volunteering and blogging. It helps me stay relevant in the world around me. I get to utilize the skills I had while I was still able to work. I like to help people, and I genuinely care about others, especially those who are experiencing the same types of health conditions that I have. And yes, there is a spiritual component to it for me as well. It feels good for me to give back, to help my neighbour, just as Jesus commands me to do in the Bible. To love one another. This is how I show my love. I don’t see it as a duty at all, it just happens to be something I’m passionate about (another blessing from God) and something that’s easy for me to follow.

It’s also these Spiritual beliefs that help me deal with my own Chronic Pain on a day to day basis. I couldn’t do this alone, there’s no way I could live my life every day without God’s help. I put my trust in the Lord to get me through every day…and this is the part that confuses people or scares them off or makes them suspicious. How do you “put your trust in Jesus”?  How does the Lord make things better?

Well, I’d be lying if I said I had the answer to that. All I know is that when I gave my life to Christ in 2001, I made a decision to trust Him, that He would always be there for me, and I’ve never once regretted it. When my pain is that the worst, I know that He suffered more and that He understands. He is with me in my agony and will never leave me. It helps to know that and makes dealing with it easier. I know that He weeps for me. So why doesn’t He heal me?? Because He has a bigger plan for me and I GET THAT. I know I can’t see His plan, but I TRUST HIM. And while I wait, I make the most of my time here instead of wallowing and crying and whimpering about. He gives me the strength to do that and I do my best not to let Him down.

It’s all about Faith my friends. You either have it or you don’t. No one can force you to have faith; it comes from the heart and it’s between you and Him. I believe that God is taking care of me, that His plan is the best plan and that one day, either here on Earth or in Heaven, I’ll find out exactly what that plan is. I’m content to wait until it’s revealed to me. And in the meantime, I’ll keep doing what I’m doing, helping others as best I can, following His guidance. I covet the prayers of others, and if you ask me to pray for you, I will. Heck, I’ll pray for you even if you don’t ask. And if you ask me to take my religion somewhere where the sun don’t shine, I’ll respect your request.

Spiritual beliefs are tricky but they don’t have to be. It’s all about respect for each other, keeping an open mind, and loving your neighbour. Remember…

There is always hope