I hope everyone is doing well. We appreciate some recent donations made as we still have a large debt from the surgery and have recently had to pay for more scans and private appointments. I continue to have issues, particularly with pain when sitting and walking. It isn't always easy but I am working on building my strength and independence. Lots of love to you all xx
Hello friends! I would like to do a wee update because some people have been asking how I am doing physically with my health. I have retained some of the great improvements from the surgery such as not having breathing and choking problems anymore and I still haven't had a full seizure since before the surgery, plus various other improvements. I feel as though the surgery took me out of a danger zone and I am so thankful for that. I don't know what life would look like if I had stayed there. I am still so thankful for everyone who was so generous. About two months out from having my surgery I started experiencing some sensations and pains in my lower spine and pains into my legs. These lower spine issues have given me difficulty walking and sitting so whereas at first after surgery I started going out to some cafes, that became too difficult to sit after these new issues developed. I can walk short distances before my legs start giving out. There are a couple of ideas about what is going on but nothing is confirmed so far. In order to work out what is going on it takes A LOT of time to get the appointments, see the right people, get scans, have scans interpreted, etc, etc. It can take months just to get one of these things done. When I first started having these new problems I was really, really heartbroken and really down. It was such an effort to get through surgery and all I wanted was to move forward and get back to what I had before my health deteriorated. Now I feel like I have let go of the expectations of what my life should look like and I feel happy for my life the way it is in the moment. It is pretty clear these issues will not resolve overnight - it would take a medical intervention to resolve them. Of course I will keep going to the appointments, scans and doing everything to support the health of my body but I don't know how long it will take to get answers or when/if I will get interventions to help with these issues. So I will be enjoying life now and not waiting til I'm 'all fixed' or 'better' to live. I am thankful I can do some little things I couldn't do before surgery. If I can hobble with assistance to the water at the beach for 10 minutes that's awesome or sit in the garden for 20 minutes that is pretty cool too. So as a Christmas wish I hope that I, and anyone else that feels moved to, can support the mental health of those around us because that can help us to live pretty awesome lives no matter what circumstances occur. I love you and Merry Christmas!!🌟🎄🥰
Do you know how useful it is to be able to sit up? Since November last year I was only able to sit for very brief periods of time before experiencing extreme pain, breathing difficulties and progressively impaired cognition. Horribly, my parents sometimes had to help me sit up to eat one bite at a time over a long period because I would stop breathing and couldn't swallow. Since the surgery I was able to restart eating my meals sitting up at a table and generally sit up for much longer periods of time. This is a photo from Barcelona when I managed to go out to a cafe for the first time since last year. I want to thank every single person who donated or supported my campaign because you made this possible. I'm so grateful to you. I have now arrived back to New Zealand and this time the flight was easier than the way over now I have my head screwed on properly!! I still have some issues with the high pressure and papilledema but thankfully it has improved. I will manage that with NZ doctors and hopefully it will fully resolve. I have various challenges and an ongoing process of recovery but I am very happy to be home and on the mend. Thanks so, so much for your support 😘😘😘😘
I have been updating Facebook but it has been a little while since I have updated here on Givealittle. I have had the surgery which was successful and the wound is healing well. There are some great initial improvement in symptoms. I am no longer stopping breathing when I sit up and my neck pain has reduced significantly making it much easier to be upright. My tremors and uncoordinated movement of my limbs have stopped and I haven't had a seizure since before surgery. However, my body has reacted in unexpected ways post surgery meaning that I've had a lot of trouble with medication reactions and vomiting. This is now under control but the biggest challenge that we are facing is that I developed papilledema post surgery which means that my vision is blurred, double and shifting. This is caused by high pressure around the brain. They are unsure at this stage why this is occurring but it needs to be addressed in order to protect me from permanent vision loss and to protect my overall health.I will be admitted to the hospital once again for the third time on the 12th. This time for a procedure which will monitor and hope to address the high pressure that has developed around my brain since surgery and that is pressing on my optic nerve causing me to have problems with my vision. This has been an unexpected and rare complication from surgery and it is really pushing me and all of us physically, mentally, emotionally and financially. One night in hospital is 600 euro. I've already been readmitted for an extra week and now to address this high pressure to save my vision and protect my whole body we are doing more procedures, seeing more specialists and may even need to spend a bit more time here, although that is not sure yet. No one wants to be in this position but here we are. I am using all my strength to get through this but we need support, so whether you can donate, share the givealittle campaign or just offer your strongest positive thoughts in this direction it is so so appreciated. Thank you!!
July already! Thank you so much to those who have helped me this far with my fundraising campaign for my surgery. You are all angels. We will be leaving New Zealand this month and I will be having surgery later in July if all goes to plan. Your donations so far have allowed us to make progress payments towards my surgery for which we are so, so grateful. We still have a way to go to cover the surgery costs so we would appreciate anyone who is able to give or share the campaign. Every time the campaign is shared unexpected generous people donate even small amounts so it does make a big difference. Also, for Christchurch people, the raffle organised by the lovely Lille Waddington will be drawn on the 6th of July (my birthday) so enter before then to potentially win over $1000 in prizes and help contribute to my surgery. Much love, K and family 💖
We made it past half way in the fundraiser for my surgery!!!! 🤩🥳🥰 Thank you to each and every person who has generously donated what they can, thank you to everyone who has shared the campaign or talked about it with their friends and family, thank you to those who have thought of creative ways of raising money and thank you to those who have wished me well and prayed for me. It is truly touching and I appreciate it so much ☺️ I would love your ongoing support to get the word out about the campaign to those who would like to donate or support us in some way. Love K ❤️❤️❤️
Hello! The Givealittle page has now been moderated. We are over 1/3 of the way to meeting the costs for surgery! Keeping up this momentum will relieve a lot of pressure off my family and me. Thank you to each and every person who has donated and shared the page. Also, thank you for all your kind messages of love and support. If anyone has any troubles donating (particularly those having trouble in the USA), please email Givealittle at helpdesk@givealittle.co.nz with 'attn Izzy' in the subject line and they will be able to resolve the problem. Love, the Eriksons xx
