The truth about living with Rheumatoid Arthritis

#RABlog week 2016 – the pain of pain meds

The pain of pain meds – Pain medication prescriptions are difficult to obtain and scary to use. What horror stories do you have because of new laws? Maybe you have been treated badly at the pharmacy or by family members? Tell your story today

 

This one is really simple. And really personal.  It comes down to this.

Without daily opioid pain medications my life is endless torture.  Almost every joint in my body is inflamed and painful, every day.  And it’s the kind of pain that cannot be worked through, pushed passed or be distracted from.  The kind of pain that invades every cell of your being and wraps you in a bear hug that’s way too tight, and you cannot breathe.  The kind of pain that, if I knew it was going to continue forever, every minute of every day of my life, with no hope of respite, I would not be able to cope.  I would choose my time and say my good byes.

Continue Reading

GP appointment, pain meds, shoulder, stomach pain, chest pain…just the usual, really

So GP appointment this morning.  The main purpose was my monthly pain prescriptions. I have been out of slow release oxycodone for two days, and it has been a good experiment.  It makes a huge difference.  I still need it.  I have been doing well with my pain meds, still holding at almost half what they were before Xeljanz.  I’m very happy with that, even if the ‘Don’t even look at an opioid or you’ll turn into an addict!!! ’ brigade are not.

Weirdly he had no idea about my ER adventure last Friday. So which doctor was the ER doctor talking to?  No idea.

Continue Reading

#RABlog week 2016 – Biologicals

Todays prompt is:

Biologics can be scary – What did you think the first time you Googled your biologic medication? What advice would you give a person just diagnosed when it comes to biologic medications? Give your readers the scoop on biologics

 

Ok, I’m going to be really blunt.  Biologicals might sound scary when you google them.  But when you have severe Rheumatoid Arthritis with multiple extra articular manifestions, kidney disease, lung disease, heart disease, brain lesions, and you’ve spent every day of the last ten years in pain, often severe pain…biologicals aren’t scary.  Mixed connective tissue disease and Rheumatoid Arthritis are scary. Much, much more scary.

It is a harder prospect when your disease is moderate, or well controlled with methotrexate and other DMARDs.  Do you really need biologicals?  Are you prepared to accept the possible side effects?

Continue Reading

#RABlog Week 2016 – Active Vs Reactive

 

RA Blog week Day 2 prompt :  Active versus reactive patients – We usually start as naïve and trusting patients, then at some point we realize we must take an active part in our own medical decisions. Tell the story of your move to active patient or why you are not there as yet.

 

Active vs Reactive.  In truth, I was always ‘Active’, but not always in productive ways.  When I was first diagnosed, I was ‘actively’ in denial.  I was a high achieving, career driven, physically fit, get 25 hours out of every day kind of person.  I had a husband, and two small kids. A business. I jogged daily for fun.  I spent a lot of time in the gym, I made good money.  You know the type.

When all the ‘gym injuries’ finally became constant pain, and months of tests and doctors eventually resulted in a diagnosis, I was unimpressed.  No way did I have an incurable disease.  That’s about all I remember hearing.  I also remember my rheumatologist saying that he would get me into remission, but it could take time.  He said it might take as long as two years.

Continue Reading

#RABlog Week 2016 – Starting Story

It’s RA blog week 2016 and I am starting it very unwell, having spent time in the ER with a new complication looming.  My very first post is late, by 24 hours at least.  Such is my life.

The Day One prompt is ‘Starting Story’ which most of us will interpret to mean our diagnosis story.  But that’s not the starting story that I will be telling.  Something that few people realise or understand is that life with a severe, progressive, degenerative illness is not one ‘starting story’ but many.   It’s a constant reassessment of your abilities, punctuated by new diagnoses and challenges.

Continue Reading