Life from the Invisible Lane

Hi and Welcome to the A & J PEI Treasures E Jean Simpson Author Blog Post and Podcast.  I’m your host, Jean coming to you from the beautiful Province of Prince Edward Island, Canada!!  The blog post and podcast is an opinion piece and only reflects this author’s opinion and not that of any other entity.  The past few days I have had the energy of a slug.  I think today is as good of a day as any to discuss life with an invisible condition.  If you want to find out more, then stay tuned…!

I’m one of those many people out there that you can’t see what is wrong.  It’s called an invisible disability.  I have more than one.  However, there is one that almost ended my life; Crohn’s disease.  The list in the article that gives a list of invisible disabilities and contains some information on it as well as other invisible disabilities.  https://www.umass.edu/studentlife/sites/default/files/documents/pdf/Invisible%20Disabilities%20List%20%26%20Information.pdf.  I also had childhood asthma which means weaker lungs and I still have some allergies.  Now, Crohn’s is also one of those ‘embarrassing’ ones so you don’t hear much except the old commercial for the Crohn’s and Colitis foundation which are pretty non-specific like only people who have it would wonder.  It involves the digestive system, and can take place between the mouth and the rectum…mine was from entry to exit or stem to stern as I put it in nautical terms as it sounds less disgusting to others.  I didn’t get diagnosed until I was a bit older.  At the time, I was very sick and was admitted to hospital.  At first we had thought it was a flu.  I am prone to getting sick easily and tend to stay sick longer.  https://www.disabled-world.com/health/digestive/crohns-disease/ gives you a run-down of the disease.  What people don’t understand about this type of disability is that when you have a flare, you feel so tired and so unmotivated.  I luckily have some things I can do while that is going on, but often in the work world, you still have to continue to work.  I like to hand sew, and colour when too fatigued to do other things.  It does make it very hard to focus to write stuff.  I become listless.  I become cranky. 

I’m one of the ones who might be considered lucky with regard to the disability.  I tend to have been able to mostly control it with diet.  I’m not sure if that will stay life long, but it is working for now.  Though sometimes, when things are not going well for a few days, I am forced to start with liquid diets, fruit juices, ginger ale, broths, etc. in order to give my digestive system a break to get back on track.  Most of the time I eat regularly what I term a semi-healthy diet with fruits, veggies, meats, poultry and such.  But, a flare just literally sucks the energy out of me.  I still maintain the exercise and walk, but it’s like dragging oneself through mud. 

How long have I had this?  The actual fact is that I likely had it since childhood…looking back I did have some difficulties in childhood.  However, sometimes it is the big attack that gets you diagnosed.  So, I managed to escape the big attack until I was older.  This is not necessarily better or worse.  I get joint pain and fatigue and run fevers when I am having an attack.  It makes it hard to plan things.  I’ve been mostly lucky and tend not to have a great many attacks.  Each one is frustrating as I’m less active than I usually like to be, more tired and less patient.  I still have to get stuff done.  Life doesn’t stop just because you have a medical condition.  Just my life gets messed up…well, that and the lives of those around me when I’m not very functional.  I think one thing that it has done is made me more determined and I tend to work through the burn to put to use a saying I’ve heard.  Of course, that only takes you so far.

As Mary Ann Mobley is credited with saying, “At the time I was diagnosed with Crohn’s disease, my doctors told me that I had an incurable illness and they didn’t know much about it.”  According to some sources, she was diagnosed in 1962.  A year before I was born.  There is more known about it now, though it is still incurable.  Where Colitis can be treated with medication, I was told that Crohn’s tends to be less successful in such treatments…which is when I decided to try to deal with it through diet.  I do have some medication, but it is only as needed basis.  For those who know little about Crohn’s, it is not one of those everyday discussions because it deals with the colon and the elimination tract.  It can be painful.  In flares, my stomach swells, I get feeling of heart burn.  Fatigue, joint pain.  I’m not sure if the fever makes me tired or I’m tired because I have a fever.  Doesn’t matter, it’s there either way. 

Further things about Crohn’s you don’t see in the mainstream is the fact that often your body does not digest food properly.  General Practitioner Doctors tell you that if you eat healthy, you don’t need vitamins, however, the problem lies in the digestion of the food I eat.  No matter how healthy I eat, I tend to be low on vitamins.  I also tend to get low on iron.  So, as part of my stuff, I need to take vitamins. My specialist told me which ones.  I stick with that.  There are some over the counter things my specialist forbade.  For example, aspirin and derivatives are off the list, Tylenol was the only one he would suggest and got upset when another doctor told me to try something else.  The specialist was over the moon when I told him I didn’t drink alcohol.  You see, blood thinners are not a great thing to do a lot of if you have this condition and could complicate things.  You are also told that popcorn is not a good idea?  Why you say, it’s only popcorn.  Popcorn has this sharp little things from popping kernels and with an unhealthy colon…not the best plan.  I do miss popcorn.  I can have it if I rip off just the white stuff, but that gets old fast. 

When I was diagnosed, I had it from throat to rectum…yes too much information, but it does give you a sense of just how difficult it can be.  It is a problem that can affect any area between the two.  It’s a serious case in that sense.  However, the one thing that didn’t seem to be affected was my ileum.  Why you say, does that matter?  Well, for one thing, I can manage seeds…this is something a lot of people with Crohn’s with the ileum affected cannot manage.  https://www.britannica.com/science/ileum.  The link gives some information about the importance of this part of the digestive tract.  When that is affected, seeds and things like that can cause a huge issue.  So, this means I can tolerate seeds on tomatoes, strawberries and such without being in a lot of pain.  I have heard of some people who literally cannot have strawberry seeds because their ileum is affected.  It is a multifaceted illness that can affect one’s life, work and outlook. 

Treatment for my first big flare consisted of Prednisone which is a steroid.  For those who have had to use it as a treatment, you know that you can have mood swings, moon face and other symptoms from it.  But it will save your life if you are that ill.  Options are at a minimum.  I have managed to keep it mostly under control enough not to need this treatment since.  I was easily annoyed, felt like a blimp.  But, be happy, at least you’re still alive.  The other symptoms going with this life saving treatment can be restlessness and high energy and the appetite of two or three people.  It takes a while for the effects of that to wear off.  Then there is the regular endoscopies and colonoscopies to ensure bowel health.  I won’t go into detail about these.  There is unpleasant preparation.  If you’re interested in details.  https://www.gastroconsa.com/endoscopy-vs-colonoscopy-whats-the-difference/ gives a brief description. 

Robert M. Hensel has said, “There is no greater disability in society than the inability to see a person as more.”  I think this is, in part, why I seldom speak about my medical conditions except to say that I am having a hard time with it.  I think that this makes it a good time to talk about it.  I have had it so long that I really don’t give it a big part of my life or at least any more than I have to.  It does affect what I do and how I do it sometimes, but for the most part, I manage to continue on with life more or less as normal.  Now I do tend to take some time to rest more than in the past.  I’m not going to ever be one of your people that involved in lots of after work activities.  I still have to get stuff done, I still have to do laundry or house work.  I do a little less of it.  I still take walks with my husband and Sam our dog.  I just find now that I take it easier at night when I’m in flare up.  I sew or do quiet work.  I don’t get to my writing as much when I am sick.  For me, it is part of my life.  It is part of my life that I do not discuss widely and maybe that is how many people feel as there isn’t a rush of people writing on it from their own viewpoint.  It is a hereditary disease and there is a possibility of family members being affected.  People talk about shameful past things and shame about our bodies.  This is a current thing and people still view it with shame or disgust because it’s the ‘crappy’ part of the body…haven’t decided if pun is intended or not. 

I agree with Helen Keller who said, “A bend in the road is not the end of the road. Unless you fail to make the turn.”  Sometimes things happen in life.  When I had my first big attack, I had just paid off my education, had just paid off my Charter as a Psychologist in Alberta.  Then I had the big attack.  I knew with the fallout from that, I would never be able to go back to counselling.  Something was different.  There was some damage from the blood getting so low.  I didn’t function the way I used to or feel the way I used to.  This might have been, in part, due to the Prednisone.  So, I went through a whole change in career and mindset.  My world had changed.  It was my first big illness, but not my last.  The one thing that came out of that was that I learned that you aren’t always going to be able to go back to what you did.  Your body might not let you take the stress or punishment it took when you were 20 or 30 or even 40.  You have to roll with the punches and do what you can do.  Life isn’t always a bowl full of cherries and you have to find a way to move on positively. 

Thanks for listening to my podcast and/or reading my blog post and thanks for your interest in A & J PEI Treasures! The podcast to this blog post is available on Anchor FM: https://anchor.fm/a–j-pei-treasures/episodes/Life-from-the-Invisible-Lane-e1gu73l.

The podcast to this blog post can be found on Anchor FM: https://anchor.fm/a–j-pei-treasures/episodes/Life-from-the-Invisible-Lane-e1gu73l

Our Blog Posts are available on

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Podcast are available on Anchor FM in a variety of formats:  https://anchor.fm/a–j-pei-treasures iHeart Radio: https://www.iheart.com/podcast/269-e-jean-simpson-bed-ba-ma-a-82327485/

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Keep watching for more e-books and more formats!  We’re always working on something!  Thank you!

Welcome to the A & J PEI Treasures E Jean Simpson author podcast and blog post.  Today I talk about living with a hidden disability from the inside looking out.  If you want to find out more, stay tuned!
This goose blends in pretty well with the snow. Invisible disabilities are similar. Our podcast for this blog post is available on Anchor FM: https://anchor.fm/a–j-pei-treasures/episodes/Life-from-the-Invisible-Lane-e1gu73l

Published by ejstoo

E Jean Simpson, is the author, blogger, podcaster and one of the photographers of A & J PEI Treaures. A & J PEI Treasures is located on Prince Edward Island, Canada. All opinions stated in the Blog Post are my opinions and may not be that of A & J PEI Treasures. We are made up of a husband and wife team and our companion animals. There are a number of things that drew us to the Island…one of which was the natural beauty of the area. We enjoy constructing things and renovations to our place, upcycling, photography, writing, and a simpler lifestyle. Some of our e-books are winners of the Canada Book Awards (https://canadabookaward.com/). ​​​​​​​Quotes, Poems and Thoughts: With Pictures from Prince Edward Island, Canada, ​​​​​​​Rocky Mountain Memories (Accepted for the 2020 Reader's Choice General Nonfiction- https://www.tckpublishing.com/2020-readers-choice-voting-page/) *(Canada Book Award winner https://canadabookaward.com/​​​​​​​) ​​​​​​​Floral Photography: Hope of Life and for the Future *(Canada Book Award winner https://canadabookaward.com/) ​​​​​​​From the Lens of my Camera: This and That and a Big Black Cat. *(Canada Book Award winner https://canadabookaward.com/) How to Publish an E-book on a Budget of $0: Making your Dreams a Reality The Big Kid’s Magical Path to Numbers (The Big Kid's Magical Path Book 1) (Canada Book Award 2020 winner https://canadabookaward.com/) The Big Kid’s Magical Path to The Alphabet (The Big Kid's Magical Path Book 2) (Canada Book Award 2020 winner https://canadabookaward.com/) The Big Kid's Magical Path to Shapes in Nature (The Big Kid's Magical Path Book 3) The Big Kid's Magical Path to Colours in Nature (The Big Kid's Magical Path Book 4) The Big Kid's Magical Path to Insects in Nature (The Big Kid's Magical Path Book 5) More to follow! ​​​​​​​Thank you for your interest. E Jean Simpson/Andrew Simpson of A & J PEI Treasures (2019). You can find us at: ​​​​​​​https://www.pinterest.ca/ej2466/ (Pinterest) https://twitter.com/EJS08026749 (Twitter) https://www.youtube.com/channel/UC5zpCudGThZpEC92ZgHm13A? (YouTube) https://www.goodreads.com/author/show/20155854.E_Jean_Simpson/blog (GoodReads) https://www.amazon.com/author/ejeansimpson_a-jpeitreasures (Amazon) ​​​​​​​https://www.bookbub.com/authors/e-jean-simpson-eab163aa-3938-4609-9afc-7a65b8b9ed21?follow=true (BookBub) ​​​​​​​https://www.linkedin.com/in/e-j-s-151a2219 (LinkedIn) https://aandjpeitreasures.wordpress.com/ (WordPress) New addition, we have podcasts started on Anchor FM and can be found on the following: Anchor https://anchor.fm/a--j-pei-treasures (Anchor). Anchor also distributes the podcast to: Breaker https://www.breaker.audio/e-jean-simpson-bed-ba-ma-author-a-and-j-pei-treasures Google Podcasts https://www.google.com/podcasts?feed=aHR0cHM6Ly9hbmNob3IuZm0vcy81MDJkOTZjOC9wb2RjYXN0L3Jzcw== Pocket Casts https://pca.st/he6mroww RadioPublic https://radiopublic.com/e-jean-simpson-bed-ba-ma-author-8grQ72 Spotify https://open.spotify.com/show/1xzUQzKzGyAChOXT4WLe1Z Apple https://podcasts.apple.com/ca/podcast/e-jean-simpson-bed-ba-ma-author-a-j-pei-treasures/id1558288352?l iHeart Radio: https://www.iheart.com/podcast/269-e-jean-simpson-bed-ba-ma-a-82327485/ https://www.podchaser.com/podcasts/e-jean-simpson-bed-ba-ma-autho-1715585 ​​​​​​​ ​​​​​​​ *(Canada Book Award winner https://canadabookaward.com/​​​​​​​) is noted on books that won

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