Hi, my name is Kitty! I’m a 40 year old mammy to one incredible girl who is my absolute world, and I live in chronic pain due to complex medical issues. I live in the North-East of Ireland, and like many with my conditions much of my basic healthcare is private because of the lack of appropriate and qualified doctors in this country.

I had this GoFundMe up previously for various times in my life (when tests were needed, or medical trips to UK etc), but have now decided to keep up full-time as unfortunately with aging life is getting more and more expensive... If you are new here, welcome and thank you! Read all about me, and my current life below...

***please note as I will be keeping this up permanently, it's a slow burner, as such. There is no actual "goal" in mind, we just had to add a number - it's for general health expenses throughout my (hopefully very long) life... Please do not feel if you know me that you have to donate at all (or definitely in no rush!) xx

My diagnosis to date are:

Ehlers Danlos syndrome (EDS, my main condition - a connective tissue disorder that causes daily partial joint dislocations and sometimes full dislocations), osteoarthritis, inflammatory arthritis on my spine, Chiari Malformation, instability in the c spine, Dysautonomia, epilepsy, gastroparesis (GP), Congenital Hiatal Hernia and GERD, MCAS (mast cell activation syndrome) and asthma.

Each condition has its own complications - as well as painful dislocations, the EDS and GP cause a lot of bleeding. I'm having bladder issues including pain and retention that is most likely caused by the MCAS, and made worse by dehydration from the gastropareis/ not being able to take in enough fluids orally. My eyesight is often made worse temporally by spinal issues, and seizures. I have dental issues and pain from vomiting. Low BP and fast and low HR from the dysautonmia affects my ability to do physio/ exercise. I'm currently struggling to eat, as my gastroparesis has reached digestive failure it seems, and I cannot get plant based nutrition drinks through the HSE. While I'm lucky enough to have a medical card that covers the vast amount of medications that I require to live, the drinks I need are not covered. This is one weekly bill. I also require pool and gym membership for physio, in the hope to try and gain or at least maintain the very little muscle I do have (again another expense as I also require a carer - my husband - with me). I have previously attended Harold's Cross Hospice publicly as an inpatient and it was amazing, however even though this is a national service St. Vincent's pulled this life-altering service from me due to living a few KM outside the HSE region. Even if I can manage to change their mind, I still need local access to a pool as regular physio is vital in between hospice stays. We have considered moving closer to South Dublin, but honestly I feel this would be ridiculous and very unfair and not something we can afford to do - or should ever have to do!

Since last posting I was FINALLY able to obtain my hip replacement publicly - after years of fighting; being told it was necessary but no one wanting to risk it/ feeling qualified to touch a complex patient. We were in a ridiculous loop. I was not allowed to obtain the travel abroad schemes because the HSE deemed me high risk, and so could not endorse a high risk patient to travel! At that stage I was losing blood supply to the hip. Eventually one surgeon (yes only one in the entire country!) agreed to go ahead, although explained the vast risks. The whole ordeal should not occur in a country like Ireland. My recovery was slow, complicated by the fact that I was in a hospital that wasn't orthopaedic specific and not having the hospice available to me, but I'm happy to say it was an overall success. While I still struggle with my mobility and mostly require a wheelchair, at least I'm in less pain now that the deformed hip is corrected... I should have had surgery at 2 years old, and instead I was 40 years of age.

I now have a private rheumatologist who I am very lucky to have, as he is the only knowledgable rheumatologist in this country for EDS and the co-morbid conditions. His advice and medication suggestions have kept me alive and going honestly, however I have to travel a few hours to see him - so hotels and petrol is added to the costs. Unfortunately my spine is not great in the car, but I need his expertise. Splitting the travel over two days by staying over in a hotel helps a little. I have also been able to obtain a public rheumatologist, after years of trying (again you must stay within HSE regions these days) who I only see once yearly - while she isn't fully qualified, she is fighting my case to access public services. Which is so very appreciated. St. Vincent's are still denying me future access to the hospice programme even though this is the only appropriate physio and hydrotherapy care for my case. Being able to even have a doctor on file for emergencies has been life altering, and again this isn't something any Disabled person should have to fight for. Never mind travel hours, and pay private. But I am so, so grateful as I know so many people don't even have that.

Unfortunately to date I have not found a public or private gastro to take on my case, as they are "not qualified". While I used to travel to the UK for private healthcare when needed, unfortunately I'm now too sick to travel. I'm hoping in the future some day to get on a plane again, but hopefully that will be for pleasure and not healthcare... My GP sent a referral to a private gastro that does know about EDS and GP, but unfortunately she turned me down also for being too complex... I was flabbergasted, confused, and very upset as she was our last hope. So while money definitely doesn't fix everything, and the fight is to find anyone qualified, I really do appreciate any help towards funding my healthcare. I know that as I age, my condition is worsening. I can do far less socially, which is honestly upsetting at times, but I adapt and find more and more things that I can do from bed. On outside days I make the most of what I can do, I appreciate just even small trips to the shop... I plan ahead, so that I have the ability to rest before and after "big events". I adapt. But I would be lying if I said I cannot tell the difference each year in my abilities. As much as I do to help myself and work my ass off with physio, everyone ages...

My rheumatologist has advised I need to be on TPN (tube feed) as my stomach isn't working. We have to date tried all meds (they have stopped working as I progressed), and we have tried all sorts of diets. Eating food is very painful, it exhausts me and does not provide energy because my body cannot digest it properly. Short term solutions to aid this are damaging in the long run.

We are not sure of our next move. The emergency department can help with dehydration, but this isn't practical or ideal. My rheumatologist is weary of doing a blind referral to a gastro who is not qualified, as we would be wasting more money then. But also there is no qualified gastro, by the looks of things. I am yet again on a public wait list for gastro, which will probably be another few years waiting, but as always it is most likely they will deem me too high risk to take on as a patient. I do not understand where they think complex cases should receive care... My GP has also referred for local nutritionist for advice on the nutrition drinks while we try obtain TPN, but she has said from experience they also turn down complex cases. I have not heard anything at all to date, so we assume that have turned the referral down without seeing me. Expense wise - even if I find a gastro to take me on, while I'm not too worried about the expense of appointments, tests and of course surgery for the TPN is probably wild money... I cannot even fathom. Unfortunately time is also an issue, and I don't think we have any options left. Which brings me here today.

I'm also still on public wait list for a power chair through local disability services - they have given no time on this, but said it should not be "years" (as I know for most they have to go private as can't wait the average 8 years). Currently I'm waiting since about last April, so nearly a year... I rang for an update recently, but they had no idea still. The only thing about going private, apart from the huge expense, is that when it breaks down or need repairs I would also have to fund that. Please make no mistake - I think it's important for healthy people to realise that the majority of people with a power chair in this country do in fact buy privately, because they simply cannot wait years.

Our next expense is a special chair so I can use my sitting room again. I was planning to purchase last year but wanted to wait until after the surgery (it's a big expense, so want to make sure it's exactly what I need). The sitting room furniture also needed to be adjusted so we can fit it in. At the moment I sometimes bring my manual wheelchair in to sit on in the house - It's not the most comfortable, but far better than normal chairs or sofas as I bought a very expensive support cushion, with your help. Thank you! But this isn't great, as you can imagine it's dirty from using outside and not easy to navigate through a small house.

I have also recently started on immunosuppressants (injections) for the inflammatory arthritis on my spine, and seeing a big difference. I'm currently on these weekly, injecting at home. Again, I'm incredibly grateful to see the progress I have made the last year... even though I'm technically "getting worse", having a doctor now makes so much difference. If I can improve my energy with TPN and get further equipment as my body changes, I'm feeling very hopeful for a more comfortable life.

In saying all that, and even though I spend a lot of time in bed as need my legs elevated/ spine supported, and sometime the pain is excruciating... I love my little life. I'm so grateful to have a daughter, and small opportunities in life that I never knew would be possible for me. I'm so happy that I made it to 40 (41 soon!), and I'm aiming to make in to 50 and beyond now... Thank you so much for making my life more bearable and manageable. The support from loved ones and strangers through this GoFundMe has honestly been overwhelming, and there isn't words to express my gratitude ♥️

You can follow my story on my FB blog (Facebook) or on TikTok (click on words for links).

Any tiny amount towards this would be much appreciated.

From the three of us, thank you for reading ♥️