/, Living/It’s Been a While… So How am I?

It’s Been a While… So How am I?

I’m good! Moving along sideways with a little forward and yes, backward – but rarely!

It’s been 8 months since my Sacral Stim was replaced with a Spinal Cord Stim – quite a drama! I lost a whole year from investigation to solution.

I know you would all like to know what happened to my Sacral Stim. I’d like to know too!

According to Boston Scientific, my brain stopped responding to the stim (and somehow drained the battery four times faster too!). Brain seems to like the new stim however and the battery is working just fine…

I’m too tired to fight for this one and/or even share my opinion with Boston Scientific. Time is precious and weighing all things up, their business doesn’t appear to need to worry about feedback or quality assurance.

Yes, it’s disappointing.

My business of art and advocacy isn’t like that! The pharma/medic world is so different.

So let’s forget all that, I’m on the other side and I’m on my way again.

What’s new?

Would it be a coincidence that my pain levels have gone up since coming back to blogging? I’m going to say ‘not’. Rather, I’m sure the pain levels relate to having made it through the last four-year life-changing transition. We marked the occasion by moving into our new teeny home.

It feels like Theo and I have shed skin. Our work, our home our ‘place’ has totally changed and we’re miles away from anything we recognised and only just feeling that some things (and some ones!) are becoming familiar.

It feels like we have landed. We are reunited with all our things and life has flow and rhythm – we’re under one beautiful roof.

I know one needs to be responsible in life, but looking back at the last four years, I’m not sure I’d do this again.

It’s been huge. It still is huge. It will keep on being stressful. Working for yourself has many things going for it but it also has a lot not going for it like the pressure to make business. There are very few financial perks. You’re never really away from work and no one is going to pay you a sick day!

Add a health issue to that and it gets super complicated.

It’s all on the line. It’s all always on the line.

Is my capacity any greater? I would say no, not from the stim. But I’m learning how to work this painful system. And I’m getting good at it.

Theo is getting good at helping me work it too! He manages so much around the home for us to be able to ‘work’.

The new stim

Just to revise my bionic bod, I have a St Judes Peripheral Stim (implanted 2011) which I used up until the Boston Scientific Sacral Stim was implanted in 2015.

The Peripheral Stim saved me when my Sacral Stim died. And it pointed out the advances in technology and also the difference between having stim below the skin or having stim closer to the nerves (huge difference in pain relief!).

The new Spinal Cord Stim is also a Boston Scientific. I know, I didn’t want to go with Boston Scientific but this unit offers the option for four leads should I require two more down the track.

I currently have two leads into the spinal cord. I can have two more leads inside the sacrum (as before) all wired to the same battery if needed (and if I’m confident the unit won’t die again!).

The Spinal Stim is very different from the Sacral Stim. It responds when I change programs but it takes time.

And when I’m feeling uncomfortable, it’s likely I need to turn it down, not up! Go figure! But whatever works, right?

It’s odd now that I don’t feel stimulation where I feel the pain but yet the relief arrives!

This system is smoother and I believe vibrations are easier to tolerate. Now, Theo can sometimes use sticky tape to wrap artwork! It’s the small things…

Travelling in the car isn’t as comfortable which is unfortunate but after I travel in the car, the ramifications aren’t so bad. Or is it that we learned to pit-stop when tooing and froing between Melbourne?

It’s important to note this is a brief update. It’s really at the one year anniversary that the turning point arrives. I remember that.

I still feel the swelling and tissue changes – reducing of course and that’s a great thing.

My battery is in my right buttock. This is a huge leap forward in the research for stims. It used to be thought that impacting the painful side would be a risk. But now science has proven the obvious stuff isn’t what causes pain, so we went for it. It’s much easier having one battery in each buttock instead of the two in the left side.

My previous battery was up high away from the peripheral stim’s battery and so that was awkward.

Thankfully from the 39 stitches required to take one battery out, two leads out and then pop in the new leads and battery, about 2 stitches were troublesome and now feel awkward. But that’s a great score hey?!

It’s a very interesting looking backside. I’ll spare you…

It’s important to also note, I’m 50 in a couple of months and there are other life changes happening. Can’t say the reduced pelvic activity hasn’t been a blessing – what a relief not to have the ovulation and menstrual cycles!!!

Oh happy days! And no flushes or other symptoms, could the brain be busy? There has to be some stroke of luck along the way surely!

So my most painful bits are my feet – they get really hot and bothered and achy and my hands feel it too.

If I push my limits, my feet and hands will wake me and they feel so swollen but they’re not. I believe it’s a kind of Carpal Tunnel feeling.

And what am I up to?

Bits and bobs. It’s what life is like with chronic pain. Small, but light duties that hopefully amount to something substantial.

Substantial is defined in various ways for each of us. For me, it is working (you’ve heard it before!).

I need to create and I need to keep busy – distraction works for me!

The Mix

My cocktail of work is made up of art, design, advocacy and now skincare! Surprising I know, but R+F skincare is brilliant and they make it easy to consult so Theo and I signed up. They don’t sell to countries that test on animals and the skincare is made by Doctors. At the least, Theo and I earn our skincare and looking well is important to us both. I never want to look the way I feel!!

Being resourceful is what makes the difference — it is so hard working life out. But Theo and do it. We burrow down and we make it happen.

There’s no choice… or rather there was but I didn’t want a fulltime WorkSafe paycheck.

Of course, I think about that. And of course, I often call myself stupid for declining it – I was safe! I had that full-time paycheck for the rest of my life.

But creativity and sharing the day with Theo is so precious to both of us. Even with the complexities and risks, it appears to be the only way Theo and I can live.

For this, I am grateful!

So I’ll stop complaining now and go on with what I’ve been doing and what I am achieving.

It’s all good! I’m moving. Life is in forward motion after being so still for so long – a decade at least!

Art

Theo mans our gallery (QG&W) six days a week (and seven days in summer). I make appearances rarely.

I manage our social media and I plan the exhibitions.

It’s not what a regional gallery would hire someone to do – there’s no way a small business could afford two directors. We made this job for me. The director sacrifices his salary but I keep telling him I’m worth it!

The gallery is gaining a great reputation. Our hearts and souls are in it and the artists we exhibit are amazing (qgw.com.au if you’re looking to acquire!).

Art is a tough game though. But it’s a beautiful one. And the community is special. So special. They’re our kind.

Am I making my own art – yes! But not as much as I like.

You would think I could do the activity that I love the most without pain, but oh no – there’s no escaping the beast!

All activity seems to impact the same painful, fatiguing way and so I have to paint, etch, draw, etc in the small bits of time that I can.

That makes it hard! You need focus and stamina to make a work of art which is why I make so few artworks and why I sketch (insta: @soulamantalvanos/).

Advocating

Here I am! And PainTrain is still strong on my agenda.

There are people waiting for up to two years to see a pain specialist! That’s horrific!! I’m probably writing to many of you.

The whole purpose of this blog was to save people the waiting time. I was waiting for 4.5 years to be diagnosed. Now it’s possible people are being diagnosed but can’t get to the treatment they need – awful!

The system has to change. So this inspires me to change the appointment system with my PainTrain.

I’ve often told myself to walk away but I know how much PainTrain helped me. The key to helping people is to understand them.

You need at least four appointments to even begin to feel understood at an appointment – or you need a 1.5-hour appointment. Who gets those?!

I’ve gone an extra step to encourage the professional/patient connection. I made an Affiliate System – check it out (for patients / for professionals)!

But I also want to hear from pain management professionals:

  1. Where are you?
  2. Are you PainTrain friendly?

I’m happy to inform patients by making a list on this site. Obviously you all know Pain Specialists Australia (pictured left with Dr Tim Hucker while Dr Christelis was away!) are PainTrain friendly.

So is the wonderful Dr Susie Gronski.

If you live out my way around Queenscliff and Point Lonsdale, Dr Janet Reid (my GP) is also PainTrain friendly.

The greatest encouragement for me to pursue PainTrain, comes from Pain Revolution – they list PainTrain as one of their top resources.

But we all need to work to change the primitive appointment system!

But wait!

I hear patients are intimidated to instigate the use of PainTrain. I also hear professionals expect patients to show initiative and drive.

Professionals could be helping more patients. Patients could be getting far more out of each appointment — and even communicate between appointments (it takes a minute to check on a patient!) as I did with my Pain Specialist.

It’s too hard attending endless appointments. It costs a fortune too!

Worse of all, you won’t be able to help anyone, or be able to be helped by someone if there isn’t a clear understanding of ‘the person’.

Who are they? What did they do before pain entered their life? Where is the pain, how is the pain’s pattern? What is the person’s appointment history? What is the person’s attitude and what ability for pain management do they have (important!!!)?

There’s so much to tell about someone by looking at their PainTrain health summary.

[Here’s a link to my 2019 health summary, I’ll remove public access in a few weeks. Edited: view public summary instead.]

Professionals, please, please, register here and/or let me know if you’re PainTrain friendly so I can begin making my list and informing patients.

Patients, subscribe and go for it! Demand a better appointment structure by creating your health summary and sending a private access token of your information ahead of your next appointment. Make a list of concerns so you’re prepared and so that your Doctor gets to see that list before you walk in. Think about this as a health CV, what do you want the Dr to know about you and the way you experience pain?

What next?

Routine! Finding and establishing our way of living and working again. And entertaining!

Theo and I love having close friends/family over. That is a bit more difficult with a business that’s open 6 days a week but having said that, we’re on country time! The gallery opens at 10 am and closes at 5 pm and there’s no commute. So loads of time in-between.

Our days can begin with walks – however short, long, fast or slow we get to beautiful sea views. I often meet Theo somewhere after he’s zoomed around the coast (when the tide is out).

Our days end together on our new couch in our new living room. I continue to potter between spaces in the evenings hopping about between art, design, advocacy and skincare.

The new life begins…

By |2019-10-11T11:40:16+11:00October 6th, 2019|Blog, Living|0 Comments

Leave A Comment

This site uses Akismet to reduce spam. Learn how your comment data is processed.