Saturday, June 5, 2021

You Might Be A Crohnie If....

 If you have become an expert at ripping off toilet paper with one hand

..... you might be a Crohnie

Monday, May 31, 2021

Subscribing

Please feel free to subscribe to my blog to receive emails letting you know when there are new posts.

If you are currently subscribed, thank you, but please know I have switched to a new subscription platform.  Blog post alerts will be coming from follow.it and no longer from Feedburner.  Just so you are not surprised.  There are additional features with follow.it that were not available with Feedburner, such as filters and more delivery channels.

Thank you all for following and subscribing!!

Monday, May 24, 2021

Hadlima Biosimilar

 I live in Canada and while my country is great for universal health care, the money from the Federal government is dispursed amongst the provinces and territories for their own needs.  

MY provincial government, the NDP of British Columbia, in their "wisdom" has decided to forcibly switch my medication for the sole reason of money.  No consideration to me as the patient.  A non-medical switch from my biosimilar, Humira (adalimumab), to a biosimilar, Hadlima. Crohns and Colitis Canada, doctors and practitioners have been advocating on behalf of patients since 2019, falling on deaf ears at the government level.  They did this a couple years back when I was on Remicade. Back in April, I wrote a letter to our provincial government, the Health Minister and the Premier, as well as news agencies, and the ONLY response I received was a note from a general entity within the government, with a link to biosimilars.  I don't need more information on biosimilars and biologics, I'm pretty sure I have done way more research on the meds than the government ever did.  I asked for proof that switching patients who are long-term users of biologics, to biosimilars has no side effects.  I also asked where were all these "savings" being directed to.  No surprise I received zero response.

I am not saying that biosimilars don't work, I see plenty of evidence they do.  That's not in question.  What I am asking those who are in charge, to prove to me that forcibly switching patients for nonmedical reasons, is better than leaving them on medications that are working for them.  The decision to switch should be between the patient and the doctor and not the government. 

I have had Crohns disease for 33 years and the past 10 of those have been on biologics.  The ONLY drug that has worked for me and believe me, I've tried many.  I understand using biosimilars, but it should be for patients who have not tried biologics and keep those who are on them, ON THEM.  When, and if, the biologic stops working for them, THEN switch to the biosimilar.  Not say, "too bad, we're switching you" end of story.

I guess we'll find out what happens to me after June 2 when I am supposed to start Hadlima.  Hopefully, it works and keeps my Crohn's at bay. 

No one ever said there were ethics in government. They are proving it now.

****UPDATE****  My Hadlima starts July and not June 2

Tuesday, May 18, 2021

You Might Be A Crohnie If...

 If you smile and nod on the outside while someone tells you how you can "cure" your disease, but you are rolling your eyes on the inside

....you might be a Crohnie


.

Thursday, April 29, 2021

Gutsy Walk for Crohns and Colitis

Once again I will be walking for Crohns and Colitis Canada for their annual Gutsy Walk on June 6

"In the last 26 years, Gutsy Walk has raised over $46 million for research projects that have led to important findings in the understanding of inflammatory bowel disease. These findings help pave the way for researchers to build on the knowledge so that together we discover new treatments while uncovering the root of these painful diseases."

Please help me raise as much money as possible for more research!!

 Donate here

The cure is getting closer and you can be a part of it.

Sunday, April 11, 2021

Possible Crohn's Disease Trigger Found..!!??

 Came across this article from McMaster University.

McMaster University: Crohn's Research

Hopefully, this leads to better treatments and maybe the cure. 

I've always wondered what triggered my Crohn's as I was healthy and athletic. Everyone I've talked to has all had different experiences, but all of us have the same question, "how the hell did I get it?" Maybe this is the beginning of the end.

Fingers crossed!

Friday, April 2, 2021

Thanks to Everyone !!

 Thank you to everyone who visited my Redbubble account this past month, there were 99 visits, and especially to those who purchased items.

As promised, 100% of my profits went to Crohn's and Colitis Canada in the form of a donation through my Gutsy Walk campaign

The Walk is on June 6, 2021, and this will be my third year walking and my first as an ostomate. At least I won't have to worry about rushing back to go to the washroom LOL.

Please come and participate on June 6 (virtually) and/or donate to the cause either through my campaign or someone else local to you.

My Gutsy Walk page

Thank you !!!!

Saturday, March 6, 2021

Art For IBD

Exciting announcement !! 

For the month of March, 100% of my profits from sales at my Redbubble account, will go to Crohn's and Colitis Canada in the fight for a cure.

You can find a wide variety of products with my artwork here:

artistslaine.redbubble.com

Here are a few examples:

Jigsaw puzzle from my Intergalactic Cloud 2 collection
Skirts from my Flowers collection
Leggings from my Fire and Ice collection







...... and so much more !! There are dozens and dozens of products

Just remember, 100% of my profits from sales, go towards finding a cure for IBD.

Help fight the fight, and thanks in advance.

~Vern

Wednesday, February 24, 2021

"But, You Don't Look Sick"

I know I've talked about this before.  How people who either don't have a chronic illness, like Crohn's, know someone with a chronic illness or are a little ignorant, just don't understand. This covers a wide variety of people from friends, co-workers, employers, and even doctors.

When I was in the beginning stages of the disease, I went to several doctors trying to figure out what was going on. Pain, diarrhea, pain, blood, pain, weight loss, oh yes, and pain. I agree could be a variety of issues, but it was focused on my gut. Having said that, there was at least one doctor who even after looking at test results, questioned that it might be all in my head.

Friends, or who I thought were friends at the time, some co-workers and even some employers use to say, "but you were fine yesterday" or "you don't LOOK sick".  Not knowing or understanding, but assuming or insinuating that I was faking being sick. The fact that I was actually faking being well never dawned on them. 

So to all those doubters for the past 33 years that I have been diagnosed and battling this "fake" disease, here is a picture of the 5 full binders of my health records. 


Yes, that is 3, 3-inch, and 2, 2-inch binders. 

Come by and read all about my fake illness, including surgical notes and some pictures. 
I'll put the coffee on.