Pam's Positively Full Life

11/05/2025

Mother's day 2025 was a much better one than that of the past 4 years but it could have been better.

I was given some handmade photo frames with photos of us from our recent adventures this month and some lego flowers ❤️💐 They brought breakfast in bed and joined with theirs too, where we also built said lego. Later, I was taken on a picnic lunch followed by ice creams at beautiful local spot on a warm sun shiny day. Ending the afternoon with a family movie.
A day filled with love.

All of this is a far cry from the mother's days of the past 4 years.

In 2022, I was in my longest hospital stint of 10 weeks. Ollie was only just turned 4 and Benny almost 6. The last 2 photos are from that time. I spent an hour or so with them, the spent the rest of the time recovering from the visit.

However, while today looks normal to the naked eye. It wasn't.

I had to take anti nausea meds for the first time in a very long time. My fatigue levels were super high and my body was heavy and sore. The noise levels of everyday overloaded my system and the comfort of full body hugs needed after injuries and arguments caused me more pain than they have in ages.

There is always more than meets the eye with an invisible illness. And it always has a way of popping up when you have plans.

23/03/2025

8 months post AVCS surgery in Germany today!

Photo 1 is from today
2 and 3 from my birthday in Germany just before surgery. The dress I'm wearing has abount an inch pinned at the back to help it fit.
4 is in recovery after surgey
5 is a couple of days post surgery

Even though there have been some EDS challenges recently, I have come so, so far from this malnourished, pained version of myself. I have no issues at all with my AVCS symtoms. The surgery completely healed them 🙌✨️

Looking back to where I was and where I am now is like two different lives.

Each and every day, I am so grateful to everyone who got me here

Little update
My EDS symptoms on the other hand, have changed. While in January I was able to do 3km walks most days and not needing breaks of rest days between doing things, I walked around the zoo for a day and traveled to Auckland no worries, I wasn't in any notable pain. I hadn't been to see any medical professionals or felt the need to either.

Now, I've been seeing an osteo regularly due to SI joint pain and neck pain, beeen to see my private Gastroenterologist for the first time in a year and had a phone chat with my private vascular surgeon due to pain and other symptoms and await a rheumatologist appointment in June. All because Ehlers Danlos Sydrome symptoms rampt up.

I wasn't taking any medication at all since about November (after taking 13 different medications and 48 pills in a day pre surgery) and will be starting one again to hope it helps.

While it feels like backward steps, it's just the reality of living with EDS and Co (Orthostatic Hypotension, and Mast Cell activation Syndrome or MCAS). I feel lucky to have had no symptoms for as long as I did. I also know that EDS is a dynamic disability. So some days I will need to make allowances/accomodations/use aids etc and other days, I won't.

Getting my head around this state of my life after the joy of an amazing recovery for the first 6 months has been a tough one. While I am leaps and bounds ahead of where my health was this time last year, facing the reality of EDS debilitating me even while I am much healthier has been hard.

I havent been posting much about my issues the past couple of months because I have been coming to terms with them and I'd much rather focus on what I can do. But, because there are many others in situations like mine, I am going to try and share more to highlight our struggles, raise awareness for EDS and also so others don't feel alone. Because having a chronic illness or disability, even while seeming well, is quite isolating. It's definitely not a normal type of life we are living, while we try and live as normally as we can.

24/01/2025

6 months post abdominal vascular compression surgery, and life looks a lot different!

This summer has been much different than the past 3 summers.

2021, was my first sick summer. Although, we had no idea what was going on. I just kept getting sicker. I had spent two weeks in hospital in November and was sent home on ensure drinks because I couldnt eat without pain or bringing it back up. I was awaiting scans and tests (which didn't happen until the following March). I still tried to do life normally. Disability and chronic illness weren't in my vocab yet.

2022, I had spent a further 10 weeks in hospital during the year while they tried to figure out what was wrong with me. My history of gastroparesis clouded any further diagnosis. I was on TPN for 10 weeks then an NJ tube.

2023, I was using a scooter, a walker and eventually a wheelchair to get around and I could hardly manage any activities, needed a tonne of sleep and would still fall asleep due to the extreme fatigue. I managed to get a diagnosis of EDS late in the year.

2024, Come Jan 1st 2024, everything went downhill. The pain came in different places and was hard to distinguish one place of pain to another. I couldn't manage anything orally and suffered dehydration which become a fight to get IV fluids. Even my nutrition through an NJ tube was failing. My mobility was terrible and I spent most days in bed or on the couch. I was finally diagnosed with EDS and AVCS.

2025
Now, after receiving open abdominal surgery for MALS, Nutcracker syndrome, May Thurner Syndrome, SMAS and PCS as well as neuro surgery for jugular compressions on both sides in July and August, I feel like a new person, although not like I once was pre illness. I've been given life 2.0 and have been making the most of all the things I can. While my symptoms are not completely arradicated (my gut is still challenged, I have symptoms which might be a re compression of May Thurner and my mobility has been tested recently with spinal issues and I have bad neck pain). Though, it is nothing like what It was the past few years. I am able to manage these symptoms and get on with many things in life I habent been able to do in years. EDS will constantly keep me on my toes, keep challenging me and testing my limits, but I'm forever grateful to have had surgeries in Dusseldorf with the amazing team of Dr's who listen and find the why.
They gave me a second chance at life.

Photos 1-3: Jan 2025, celebrating 6 months post surgery
Photo 4: November 2021, start of a 2 week hospital stay
Photo 5: April 2022, sometime during the 10 week hospital stay
Photo 6: Jan 2023, having a good day, so a visit to the beach
Photo 7: Jan 2024, couch rest
Photo 8: July 2024, Surgery recovery
Photo 9: Jan 2025 scar, heading to the hotpools
Photo 10: Jan 2025, enjoying some snacks celebrating 6 months post surgery

19/01/2025

We had our first caravan Holiday! Which is also our first holiday since July 2021 just before I got sick.

We had been out a handful of times for one night trips to test it out, iron out the kinks and check that our animals liked it (they did, phew) and we just got back from our first family Holiday since July 2021!

We headed up the coromandel to Hot Water Beach because the boys requested that, or snow 🙃 It was a beautiful 5 day stay where we also visited Cooks Beach, Hahei and Whitianga. At our camp site, the kids had other kids to play with most of the time, paddocks with Turkeys and a creek with Eels and fish to explore when we weren't out at the beach.

The caravan, a Bailey Phoenix, is quite spacious with our bedroom having two sets of doors dividing it from the bathroom and the main living area/the kids room. The bunnies have a space in our end room, as well as a pop up outdoor run and tunnel. Griffy sleeps on the boys bed or happily lounges on the couches. He even managed to stay inside happily while we visited the beaches as no dogs were allowed.

The day we left I woke up with pain in my lower back/pelvis, which took away my ability to go for walks and things that I'd been able to do so well for so long. Luckily, we have a really comfy matress and memory foam topper, so I had a great space to lay and rest when needed in the caravan. Despite the pain, I managed to have a lovely time away, as did everyone else, pets included.

It was a great first trip away in it and we look forward to more!

Thanks to Dan at RV Mega Mount Maunganui for finding us what we wanted and hooking us up with a great deal and helping us out to make it exactly what we wanted.

21/12/2024

🎄We want to say a huge thank you and Merry Christmas to everyone who has supported us this year✨️

We are so grateful to have had your support to get Pam to surgery in Germany. It has been truly life changing, for all of us. The trajectory we were on, has completely changed. Pam is now in a position of health that allows her to really engage in everyday life and currently, the Christmas festivities. Enjoying the delicious Christmas food for the first time since Christmas 2020! One of the kids highlights recently and definitely one of ours too, was a recent trip to the Athenree Hot Pools. Pam was able to swim and play with the kids in the water for the first time in over 3 years. They believe it was the fist time ever, because they were so little and can't remember ✨️

In order to fundraise to get to Germany, we had many local and wider communtiy businesses support us with vouchers for our various fundraisers. In fact we were inundated. These donations helped us raise $180K in the end, which allowed Pam to get 2 neuro surgeries on her Jugular compressions as well as the huge open surgey for all her abdominal vascular compressions, coming to a grand total of $250K! (without even including living costs). A huge, costly experience, but one that had much of the load taken off thanks to the kindness and community spirit from the Waihi Beach, Waihi and Athenree communities we are so lucky to be apart of.

Since I needed to get surgery urgently, and we only had a few short months to get the money together, we didn't use all the vouchers we were given. Organising the fundraisers was another full time job!

We have quite a few vouchers remaining. So we have decided that we will use them as a thank you to our communtiy. To those that have supported us in so many ways. Not only with said vouchers, or donations, but with your support and heart felt wishes.

Pam wouldn't be here in this way if it wasn't for you all.

If you or someone you know could benefit from, is in need of or deserves a treat, please tag them and comment what voucher you want in this post and we will contact the recipients we choose for the vouchers. We would like these to go to people in our community so we can easily get them to them.

Here is a list of the vouchers we are gifting:

$250 Silverstream Hair Studio Voucher
$100 LA Diva voucher - Waihi
Beauty Loft Voucher - Waihi Beach
$100 Happy Hens Farmshop Voucher - Waihi
$40 healing with Andrea Voucher - Athenree
60 minute treatment at Revive Massgae Studio - Waihi Beach
$90 Ladies 1 hour massage at Back in Balance - Waihi Beach
1 1/2 hour facepaint and 1/2 hour balloon twisting with Party in The Bay
Kim Jesney massage voucher - Waihi Beach
$200 Embroidery Warehouse voucher
$50 Nannas little Pretties voucher
$100 Waihi Beach Gallery Voucher
2x Bike Service Voucher at the Bike Clinic Athrenee
2x 1 hour car lesson with Revs Road skills for life Paeroa

Please tag someone or yourself and let us know what voucher, then we will choose some recipients for them.

Thanks again and warm wishes for the holidays 🌼

✨️Pam, Jon, Benny and Ollie

*I have added a couple of collages which show how drastic the change has been since my surgeries, just with my appearance alone!

07/11/2024

🎉Raffle winners🎉

We are sorting raffles that were not drawn yet...drumroll....

Congratulations to Janine, Adele and Kim....you have won a raffle prize. We will be in touch to claim your prize.

Stay tuned for a massive raffle to come just in time for summer.

01/11/2024

This document has been put together by a couple of mums to AVCS paitents who have gone through surgerybin Germany and are also fighting to make changes here in NZ.

Please have a read as it provides a lot more facts and is a fantastic rebuttal to comments Te Whatu Ora makes when questioned for media articles.

17/10/2024

Let's hope the government finally stand up and listen.

"There was a time when I didn’t think I’d see my kids become teenagers."

Once tube-fed and often bedridden, a Bay of Plenty mother can eat again for the first time in years.

17/10/2024

Thanks to Megan from the Bay Of Plenty Times for another brilliant article on Pam's journey.

'There was a time when I didn’t think I’d see my kids become teenagers.'