Well That Didn't Go to Plan

 So after almost two weeks on the 25mg of Mercaptopurine, I was having incredible headaches and nausea and what a bonus the insomnia was worse than usual. I made an appointment with my GP at 3am in the morning out of desperation, however surprisingly I woke up kind of ok. The Panadiene had taken the edge off. 

I really thought I could manage to go to work and so switched my appointment to 3.30pm. 

This brings me to what I do for work. I am a Equine Hoof Care Professional. Basically I am a farrier who doesn't nail on shoes to the hooves of the horses in my care. I can glue them on (yes that is a thing) but generally my description most closely resembles podiatherapy for horses. I love what I do, although it has been taxing these last few months with what was then an undiagnosed health issue, but for the most part I can't imagine going back to doing anything else in the mainstream world.

So lets appreciate how someone with Crohn's can come into all sorts of trouble doing this job...I am often quite far from a toilet...that's probably the hardest part. My urgency to go has been infrequent lately but trust me I know where every public toilet is in every area I go to. My worst fear is having to use a clients toilet or worse still, dropping my pants in a paddock somewhere. Then there is the physical aspect, I am strong but this job requires a fitness that comes from doing the actual job. Aching joints do not help, as well as the wear and tear from the job in itself. 

It goes without saying that upon diagnosis my greatest fear was that I would no longer be able to do the what I love, lets not forget it's outdoors and we are like little vampires who shrivel in the sun! I am preparing myself the best I can by reducing my workload to a more manageable level. Three days a week and no more than 6 horses at a time. This for now is totally achievable and given I am in the early stages of Crohns, I hope to keep healthy and trim for many more years. Just a big no to naughty horses and stay out of the sun as much as I can. I have bottles of SPF everywhere. 

The Dr's appointment revealed that I was having issues most likely with my pancreas from the Mercaptopurine and the side effects of nausea, headaches and lethargy were also signs it wasn't getting along with my body. I stopped taking them that day, but I continue with the corticosteroid Budesonide until I speak with my specialist. It has been 3 days and I feel much better. 

Where to next? Well on the 11th of January my specialist will call me to discuss the next drug we try to keep my body from attacking itself. It is another chemo treatment called Azathioprine. I am guessing if that one doesn't work then I might qualify for the biologics? 

Again I am appreciative of the fact that nothing is serious but mindful that I don't want to trigger anything. Healthy eating, less stress physically and mentally...that is my long game.


Comments

Post a Comment

Popular posts from this blog

Time To Ease Off on The Hard Stuff

 Hellooo, well its a fucking hot day today that's for sure. A good day to sit inside, avoid the heat and get my world in order.  A fair bit has happened since my last blog but also not much at all in a way. President Trump has been impeached for the second time! The first time a President has been impeached twice. Hopefully this time he will be held to account for his atrocious term as President and the harm he has done completely dividing a nation. So my Crohn's update! I spoke with my specialist on Monday and really it can be considered nothing but good news. He decided that I was not a candidate for the mercaptopurine obviously but also the azathioprine was a no go. The great thing about this is that in the future, as I understand it, I will have access to the less harsh and better for me drugs, that's if I need them. In the meanwhile I have been put on Mezavant. This is a colitis medication, and while it doesn't get through the layers to get to more of the Crohn...
Read more

Day One - Steroids and Immunosuppressants

 Well here I am. 47 years old in the year 2020. Right now it is obvious to the world that this particular year will forever be known as the collective months of dumpster fire events that started with the most wide spread and destructive fires beautiful Australia has ever seen. We thought that was the worst of it, but the smoke cleared and February saw the little virus in Wuhan, China, take a grip and quickly escalate into a pandemic.  As of right now, 7th of December 2020 (Australian time), close to 68.5 million people have been infected and 1.5 million have died. This is something we need to keep in perspective as it is not over, even with a vaccine being imminent.  So what did 2020 deliver for me personally? Well in January I believed that I had picked up a bug on the island of Gili Air in Lombok, Indonesia. My husband recovered from the gruelling vomiting and frequent toilet "runs",  but after several weeks I hadn't. Thus started the hunt for answers to what ever ...
Read more

Today the Willy Wag Tail Told Me

 My grief was not supposed to be part of this blog, but a moment today pushes me to write. I know that coping with chronic illness can go hand in hand with feelings of hopelessness and defeat. Currently I am supposed to be doing another calprotectin test. I met with another new GP who agreed given my recent symptoms it warranted a test. She was reassuring and told me my experience was valid, that I was allowed to feel my feelings and that yes I should attend that monthly support meeting despite feeling I might not belong there being mild Crohn's. Fast forward to today and the feeling of utter hopelessness and raw grief raise their ugly heads again. It is not the first time in the last two and a half years I have felt that I would prefer to be dead. It is not even about the Crohns but really about the fact that I can't escape the stress of family and marriage that seems to exacerbate my symptoms. They tell you to stress less for the sake of the disease! Well how the fuck are you...
Read more