25/01/2025
LIFE UPDATE
I hope everyone had a wonderful Christmas and a great start to 2025! Life here has been quite the rollercoaster, so buckle up for an update.
**HOLIDAYS**
Over the holidays D’s 7 siblings along with his nieces and nephews were all here. He was able to spend time with all of his siblings in Pauanui, which was a much-needed break for him. His family stayed next door, but I wasn’t able to join in as much as I’d have liked. Chronic pain, constant migraines, dizziness, and fatigue meant I couldn’t stay upright for long.
In busy settings, I often find it hard to explain how I’m feeling - I don’t want to draw attention to myself or detract from quality time. Quietly slipping away feels less disruptive, but I still worry it comes across as rude. On one occasion, I didn’t think I could stand for another 5-10 minutes to say proper goodbyes and didn’t want to interrupt lunch/conversations, which left me feeling conflicted.
One blessing during this time was having my Aunty visit from Palmerston North. She was a massive help with the kids and household tasks while D was away, and I absolutely loved having her company. We spent days chatting and planning potential travel itineraries.
**MEDICAL*
Right now, I’m in a very challenging situation without adequate care coordination or a clear plan for managing my hydration and nutritional needs.
The unfunded medication i’m on that helps my stomach/gut motility is out of stock with no ETA from the suppliers.
An NG tube had previously been discussed as an option to maintain fluids and nutrition during flares, helping me avoid urgent care or ED visits. Initially, this gave us hope, but that support has since been withdrawn. As a result, I’ve had to rely on IV fluids at urgent care. Most recently i’ve been managing only 250–750ml of fluid and a few bites of food daily for about 2 weeks now & i’m still struggling. My weight continues to drop, which is gut wrenching.
Due to two flare ups from the end of last year, i’m down 4kg and am uncertain when/if i’ll bounce back.. the kilos that I tried SO HARD to gain over 8mo continue to disappear.
On bad days, I’m unable to stay upright due to unbearable pain, nausea, and swallowing difficulties. An NG tube was meant to alleviate some of these issues, and my gastroenterologist shared examples of this approach working well for others. Unfortunately, without proper support, I’m left navigating this alone.
I urgently need comprehensive, wraparound care. If you know of any gastroenterologists or clinics in the Waikato who might help, please reach out. Surgical options are off the table, but without proper support, I don’t see a clear way forward.
I intend to see a Cardiologist ASAP and also have another consult booked with my vascular surgeon as this is hugely impacting my POTS, AVCS etc, so hopefully they’ll have some suggestions on ways around managing this.
**PAIN**
As my dehydration, vascular compressions and gastroparesis worsen, being upright has become increasingly painful. I’ve avoided stronger pain medications until now, but codeine and medicinal cannabis aren’t providing the relief I need during flares.
I’ve been referred to the chronic pain clinic publicly and am still awaiting a consultation. In the meantime, I’ll be discussing pain management with my GP again next week, including options like liquid codeine or morphine. It’s a difficult decision, but I want to avoid more trips to urgent care or hospitalisation and she has given me some time to carefully consider this as a potential solution.
As much as I’ve tried to avoid it, the pain is escalating, and flares have become my new norm, lasting for weeks at a time. It’s no longer something I can ignore if I want to function. I don’t want to miss out on opportunities, connection, helping others, volunteer work in the community or quality time with loved ones because of this anymore.
Immersing myself in the above is what fills my cup, allows me to escape my circumstances & helps me to bless others who are also struggling.
**TRAVEL PLANS & TESTING**
In March, I am scheduled to travel to Spain for a consultation with a vascular surgeon. I will have comprehensive testing & scans done for my vascular compressions, gastroparesis, and suspected R-CPD. We will also discuss risks/benefits and come up with a surgical plan for me to consider.
Flying for 35-40+ hours feels daunting as dehydration worsens my vascular compressions and POTS. Cabin pressure will already put enough strain on my body, so travelling without pain management/hydration in place feels unsafe.
That said, I’ve decided it’s best to go ASAP. My health is likely to continue declining, and it’s clear that i’m not able to access the help I need here in New Zealand.
** GRATITUDE **
While the above contains many hurdles, there are countless blessings I haven’t yet mentioned. I’m deeply grateful for these and can’t wait to share more in depth when the time feels right.
- An incredible, supportive family
- Beautiful friendships
- Montessori Little Hands Te Awamutu
- Opportunities and connections that will make a difference in others' lives
- The ability to use my experiences, strengths, and journey to help others
- The kindness and generosity of others, which has allowed me to access necessary care and medications up until now
- My new found freedom (wheelchair!)
- The ability to seek further clarity overseas from a specialist
- A strengthened testimony, shaped by the contrast of trials and triumphs
- The peace of knowing that Heavenly Father knows me, loves me, has a plan, and is guiding me every step of the way
I truly believe that as I strive to help and bless others who are struggling, even amidst my own circumstances, I’ll be given the capacity and health to continue doing so.
I can’t wait to share more with you as 2025 unfolds and am wishing you all the best as you settle back into the daily grind with your whānau!
Flame
xx
