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Hidradenitis Suppurativa is taking my quality of life, help me get some of that back.

  • Happy New Year ✨

      31 December 2024

    It's been a long time since iv done an update on here! I hope everyone has been enjoying a nice festive break and are all ready for 2025!

    This year has been a roller-coaster to say the least, but I really wanted to say a massive thankyou to all the donators, family and friends who have checked up on me and to all those who have supported me throughout this year.

    Your donations have helped me financially and mentally in so many ways and i just wanted to break down how much your support has helped.

    Because of you, I have been able to cover:

    12 District Nurses appointment travel costs

    5 Specialist appointments travel costs

    8 GP appointments and their travel costs

    1 Disability permit

    My mental health has improved significantly, with my PICC line treatment having results better than anyone could have imagined. This allowed me to complete my final student nurse placement so i have completed my Bachelors and also passed my state exam so i am a Registered Nurse now 🩺❤️ but unfortunately nothing lasts forever, and i have started getting flares again after being in 'remission' for over 3 months, but i am still on the plastic surgery waitlist so i am hopeful that once that happens, my flares will be next-to-none ❤️

    Thankyou so much everyone, i appreciate each and every one of you.

    Happy festive season and have a safe and happy new year ❤️

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  • I have a picc line 😬

      29 September 2024

    Hi everyone, sorry its been so long since i last did an update on here.

    I had the appointment with the infectious diseases specialist at DPH - she was incredible. She knew about my condition & listened to everything I had to say. She was onboard with the idea of a PICC line but wanted to trial a boosted course of oral Augmentin beforehand, which didn't show any improvements.

    I got my PICC line placed on the 23/9 after a lot of confusion on the day (being called to say it was cancelled because i didn't show up WHILE I'm sitting in the waiting room, already checked in with front desk 🥴) & its been a twister of emotions and reality checks, realizing this is what my life will be like for at least 6 weeks, preparing & giving myself my own meds everyday, while still doing my final nursing placement and preparing for the big exam.

    The special authority and funding for my secukinumab medication was also approved for another year so that is a whole lot of weight off my shoulders.

    I also need to include another massive thankyou to all donators. This year has been so incredibly full-on and the generosity & kindness from all of you is so heartwarming. Your donations so far have helped me cover 6 doctors appointments, petrol to and from the district nurses, a mobility permit, medical tapes that don't react with my skin, petrol and parking to get my PICC line put in, and upcoming checkup appointments for my PICC.

    Thankyou again to all of you, donators and readers ❤️ stay safe

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  • Lots of updates!

      31 July 2024
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    Hi everyone, I hope you're all well. Just a quick update:

    A week ago, I received the letter in the photo, saying I've been waitlisted to see the plastic surgery team for reconstructive and deroofing surgery with the plastic surgery team. The usual wait is around 6 months, but my healthcare provider thinks I'll be seen in 4.

    I'm also scheduled to see a specialist on the General Medicine team to discuss my medications and antibiotics, with an infectious diseases specialist present, which is a bit confusing since HS isn't infectious.

    My GP referred me to occupational therapy for mobility aids, but my application was declined. I've been advised to approach the district nurses for help, which I'll do tomorrow.

    Previously, I mentioned that my funding for secukinumab injections would run out in September. My GP contacted several dermatologists north of Dunedin, but they either found it too much work or didn't have time, which was disheartening. The funding application is challenging since the medication isn't indicated for HS patients in NZ, so someone has to argue my case for it to be approved.

    I also submitted my mobility permit application, which cost $50 which leads me to saying another big Thank You!!! to all the donors; your support means so much❤️

    I understand there will be a lot of waiting for appointment letters to arrive, but I'm really hoping it will all be worth it. I just want something that works, no matter how invasive.

    Stay safe and take care, everyone ❤️

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  • Receiving THE letter...

      10 July 2024
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    Hi all,

    I finally received the dreaded letter in the mail. We all knew it was coming but to finally get it, it sets everything in stone. This is heartbreaking.

    It is so heartbreaking, frustrating, makes us feel guilty for having these conditions, like we are left alone.

    I am so grateful to have a GP who understands my condition and pushes every bit of their power, knowledge and abilities to try get me the help i need but its also putting immense pressure onto the already strained GP force, with wait times for standard appointments still 3-4 weeks out, with an entire department of patients now dumped on GPs.

    To know there are people out there without a diagnosis yet - to me, that is heartbreaking.

    And to think that they are trying to fill these dermatology positions, who is going to want to step into them!? seeing the backlog of patients waiting for them when they start, patients who could have been put on preventative medication but instead will require surgical intervention, costing our health system more money, patients who are angry, frustrated, in pain or patients who were on the waiting list but are no longer here because it was just all too much.

    Our health system is failing us as a nation and something needs to change!

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  • 5th July Emergency Department Visit

      7 July 2024
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    Hi everyone,

    Didn't honestly think I would be making another update so soon but sadly I was back in ED on Friday afternoon.

    In the end, the ED doctor prescribed me some more steroids as he suspects that my previous dose from the last ED visit wasn't tapered correctly and was ended too abruptly. He also prescribed me doxycycline and rifampin. I have been on both of these medications in the last two years with no success and when I went to get the rifampin yesterday from the pharmacy, i was told there was a decent charge for it as the ED doc didn't apply for funding so I had to decline the medication as I don't get any of this pages funds for another few weeks.

    The ED doc also recommended that I start looking for a private dermatologist to go the surgical route at the end of the year, and i told him that i have already tried to find a private dermatologist in the entirety of the south island that is willing to see someone with hidradenitis suppurativa, and none of them will or their books are already filled and there is also no way i can afford to go to a private dermatologist.

    I'll be honest, I'm feeling pretty defeated and when I got home after ED, I had a big cry. There is nothing anyone seems to be able to do and i'm terrified that it will take a life threatening complication, sepsis or my mental health to actually get someone to listen and sit and think.

    Thankyou to everyone for their engagement on this page and kind messages ❤️

    Good vibes and positive thoughts ❤️

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  • GP appointment ❤️

      27 June 2024
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    Happy Thursday everyone!

    Had my GP appointment today and I managed to get some more antibiotics, pain relief and my secukinumab injections prescribed to me to cover me for my upcoming nursing placement.

    I have been told that my secukinumab funding runs out in September this year and I am unsure of the process after that to get it re-funded as my GP cannot do that, and a specialist dermatologist will have to do this, who when and where, i have no idea.

    I have a 30 minute GP appointment booked for mid July and after discussion today, my GP and I think its a good idea to create a care plan for when I have flare-ups, where i need to go to access what i need, and what prescriptions i'll need.

    For those of you who are reading and haven't followed along from my social media, while i was in ED for my condition on the 21st of June, i had a urinary catheter put in and it was taken out within 10 minutes due to internal pain that caused me to pass out.

    Sadly there was no documentation of this occurring from my doctors perspective having read over my ED discharge notes, so that's a whole other problem in itself.

    I begin my final 120 hour placement on the 1st of July, so I'm not sure how many updates I will be doing over that time all going well and health staying stable for those 3 weeks. Then its planning time, and getting me prepared and comfortable to begin my 9 week transition placement!

    Again, thankyou so much to everyone who has donated thus far. Massive appreciations ❤️❤️

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  • THANKYOU! + District Nurse and GP Nurse appointment updates

      26 June 2024
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    Hi all,

    Thankyou so much for the kind donations that have been made in the last 24 hours. I am beyond words, I have cried many happy tears so thankyou all who have donated ❤️

    Today i had a district nurses appointment and I was given these Cavilon applicators to try for a trial to try and get funding for these. I'm really hoping these work as there has been great success in other patients with similar conditions to myself.

    I have been told that there is a chance that the district nurses may not be able to fund these, and I would have to purchase these myself.

    I have managed to find a reputable supplier in New Zealand that sells the same product in different forms varying from $29.80 to $88.14 so this may become another cost.

    I also had a GP nurses appointment today for an injection that me and my GP are hoping may help my skins integrity and also help with my red blood cell production. I was told today that previous appointments were over-charged, so I will update these changes in the donations tab when I have a confirmed list of charges from my health provider, so it more accurately shows what each donation is able to fund ❤️

    I will keep you all updated on tomorrows GP appointment.

    Again, thankyou so much to those who have donated, and also a thankyou to those who have shared my story on social media/s. Spreading the word and creating awareness is so important ❤️

    Ngā mihi nui

    Jordy

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