Hello. Yes, it has been some time since I did a regular post here – a couple of years I believe. In case you aren’t following my YouTube channel or Instagram account I thought I’d do a bit of an update for you before I endeavour to get back on the blogging bandwagon.
As you can see the family has grown somewhat. Christy is 17.5, now driving and has started at TAFE doing a Territory Preparation Course.
Athena will be 20 next week, has an (in training) service dog, Koda, and is starting University this week. They have also recently gotten engaged to the lovely Ellie (though the wedding isn’t being planned for a few years yet).
My life is still spent dealing with fibromyalgia and adjusting to life without kids in regular 9-3 schooling. Kevin is a working for a company (having sold his about 18months ago). And we are still travelling, both in Australia in our motorhome, and overseas.
I feel like I have a lot to catch you up on but I’ll leave it here for now. If you have any questions or want to know about anything in particular, please let me know and I’ll write more about it.
After dealing with horrendous fibromyalgia pain for most of the last 6-8 weeks, I finally decided it was time to try another treatment. This one involves me going to hospital for 7 days for a ketamine infusion. The hope is that it will reset the way my brain interprets pain and either reduce or eliminate it (for the most part).
Since I was to check in at Wollongong Private Hospital at 12.30pm, we decided to get some lunch at the cafe.
So impressed to find such healthy food available at a hospital as it’s not always the case. It isn’t a vegetarian cafe, but I’d say that makes up 90% of the menu.
Kevin and I both had the three cheese lentil triangles and the whole meal was amazing.
We then “checked in” and were sent up to level 3 – the medical ward. My room was still being cleaned so we waited in the patient lounge.
Of course I wasn’t that surprised when told I had one of the only two shared rooms in the ward !!! But I was also assured I’d be soon moved to a private room.
Of course I also got the bed furthest from the window so didn’t get the enjoy the view from it.
The hospital has only been open for a few months so everything is still brand new.
The doc had quite a bit of trouble finding a working vein but got one on the 3rd try.
Then it was time for the treatment to start.
You start off on 2ml/hr, increasing by 2ml each hour. Obs are taken every hour until you reach your max dose, which you then stay on for 7 days.
It was pretty hard to get settled into anything (reading, watching TV,etc) so I just chatted with my roommate, Beverly, who was also having her first infusion.
The food here (at the least the vegetarian meals) were all delicious and I loved everything except for the scrambled eggs at breakfast).
Funnily enough I hardly slept the first night and probably didn’t dose off until about 2am. Time felt really weird and I kept feeling like I’d just woken up, when you’re in that dazed state.
The next morning things got very weird (luckily after Mum & Dad had visited) and I feel like I had a drugged trip (but not ever having done drugs I don’t know if I really did). Then my face started to feel numb, like I’d been to the dentist, and I was slurring my words. This meant the dose had to be lowered. I’d been on 10 and was taken back to 8 and all the symptoms went away. Around 5pm I was taken to my new (private room), where I had this awesome view from my bed !!
The next morning I got to enjoy the sunrise without getting out of bed.
Though Kevin felt he had the better view :-).
My meds were increased again, but I suffered the same side effect, so it was back down to 9.
Mum & Dad bought me these gorgeous flowers.
The doc decided to keep me on 9ml/hr since I was unable to tolerate a higher dose. The rest of my stay seemed to settled into a routine of enjoying the view, having the family visit, eating nice meals, sleeping (though sometimes not the best), and visiting with Beverly who was in a room nearby. I didn’t feel like watching the movies I had on ipad, or even reading, so I did lots of Disneyworld reading/planning.
Unfortunately I had lots of problems with my canula and ended having 5 over the course of the week !!
On my last night I was able to watch the Paris-Roubaix one day race from start to finish (except for a 1-2 nap during).
It went until about 1am and I was so glad I stayed up to watch as it was won by Aussie Mat Hayman.
My last sunrise before I was released just 6pm on Monday night.
It’s still early days but it does seem like the treatment has worked. Tuesday was a bad day, but Wed and Thurs have been great. Only time will tell. Then of course is the question of long it will last. Most people tend to get 6-12 months before it’s back to hospital for another stay.
If you want to learn more about my stay please watch my vlogs –