People just don’t understand….

People just don’t understand….I have Crohn’s Disease.

On any given day I can have some or any of the following symptoms: anemia, arthritis, constipation, decreased appetite/increased appetite, depression, diarrhea, fatigue,  gallstones, joint pain, kidney disease,  liver disease, mouth sores, ulcers, rectal pain, skin disorders, weight loss/gain, nausea, chest pains, sore eyes(eye conditions),  abdominal pain, cramps, bleeding guts, gas and bloating, lethargy, inability to eat most fruits and vegetables, inability to process almost all fibre, inability to process, caffeine, soda, some or all dairy….the list goes on and on…

I can make myself look passable and I can make myself sound passable…but almost all the time I’m lying to you.

I can work for a living but I feel like shit… Anytime you ask me how I am and I say “wonderful”, “delightful”, “just ducky”, “Great!”….I’m full on lying to you… I’m likely in flare and feel like the bottom of the bird cage…or worse.

When  you invite me somewhere and I tell you that I can’t make it or that I don’t feel well I’m not lying, I’m not ignoring you and I’m not trying to get rid of you.  I sincerely do not feel well every waking moment of every single day.

People that don’t have to worry about shitting their pants in public or throwing up in a restaurant or at your desk at a job have no understanding of what it’s like to live with this disease…

And…sometimes I get fed up because people just don’t understand.

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cross your fingers…🤞

“Malaise: A general feeling of being ill, having no energy, or an uncomfortable feeling that something is wrong.”

In my case it’s having infection levels just high enough to cause a low-grade fever and flu like symptoms 24/7…I have breaks in time where I feel almost great and then it comes back…when I first get up in the morning until I eat… sometimes I get a break around lunchtime and sometimes I get a break around suppertime

Here’s hoping the new Dr and his drug study help.

I have a new doctor because the doctor that I’ve been dealing with for my Crohn’s disease for 20 years is currently off on her own medical leave of absence. Have not actually met this doctor yet but I am looking forward to it because I feel like crap. My previous doctor was able,  over the course of 14 years, to get me and my Crohn’s into  remission and keep me there for years. So much so that I went from seeing my Crohn’s doctor every two months to only seeing her once a year .

In August my Crohn’s came out of remission… and I’ve been working to get some assistance from a specialist ever since. The challenge with chronic illness is that it’s a hurry up and wait situation all the time.   There’s no way to change that doctors in this country are so overwhelmed by the sheer numbers of patients that there is virtually no way for them to be preventative…it’s more about dealing with the urgent symptoms as they present.

Because my Crohn’s is out of remission the food that I’m able to eat is not compatible with the food I was eating to lose weight and I’ve already gained back 20 pounds of the weight that I work so hard to get rid of… that could be enough incentive by itself but seriously? I want to feel better.  I want to feel good all day every day as opposed to having my days split between good and bad whether it’s intermittently over the week or intermittently over the course of a day…I want to feel better.

This new doctor has suggested a drug study.  I received the consent forms yesterday…there’s 50 pages of them… they certainly cross their T’s and dot the “I”s.

Everything involved with the test would be covered financially which is a real boon in this day and age, however, there’s no guarantee that you actually get the medication because it’s a double blind study.  You could well be a participant that gets a placebo.   And because it’s a double-blind study the doctor also doesn’t have any understanding of whether or not you’re really actually receiving the medication or are on a placebo.

Because Crohn’s is still not a very well understood disease they are always looking for medications with the fewest side effects and the greatest positive affects for patients with this disease.

I’m pretty sure I’m going to participate in the study and I guess I’m just going to keep my fingers crossed that I don’t end up on a placebo. That if I do get the drug, the side effects don’t make me feel worse than I do right now.

I’m trying not to be whiny…but I feel like I’m failing…unless you live with something like this (or any chronic illness) you surely can not understand the true meaning of the word relentless.

So…Let’s all keep our fingers crossed…

Summer is coming…and the Pickle needs me 🤞

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