An Update , News and Thank Yous

It’s been a while since I updated on my situation and upcoming Neurosurgeries in Barcelona.

A lot has been going on in the background since.

This is a very stressful time, emotionally and physically not just for me but for my family also.

I am facing in to a surgery that right now is to save my life, meanwhile my body is not doing so good and I’m fighting through that to even survive surgery.

It’s a very big weight to carry and is not something I want to talk about publically all the time.

Two of the Surgeries I need

Dealing with your own mortality at the age of 32 is not a public Facebook event, I am having a hard time coping with it and a very hard time sharing.

I’m sure this is understandable to anyone who has gone through serious illness and hard times in their family.

I was back with my Respiratory Consultant 2 weeks ago now.

I was unlucky enough to get a Pulmonary Embolism travelling home from seeing the Neurosurgeon in Spain.

October after Pulmonary Embolism

I am still recovering from the Embolism and waiting on pulmonary function tests to check my lungs. The biggest issue is I am on blood thinners for life and I started having bleeds in December.

My haemoglobin dropped to 7 which is quiet low. Over Christmas and January I had the nurse out a few times and was hooked up to a drip 8 times to try raise my blood volume but I was still so very weak and exhausted.

My hospital at home

The Respiratory Consultant was not happy with my blood levels and called me the next day to go into hospital for infusions to raise my haemoglobin.

Hoping this treatment helps

Right now he wants to focus on getting my haemoglobin up and I have to be at least 9 months for recovery of the embolism + 6 months before any surgery.

This is very hard news for me as I had my last upright mri scan in March 2017 and the degeneration was significant. Time isn’t something I have to play around with when I have brainstem compression tonsilar herniation and myleopathy which is extremely degenerative.

Over the last year I can feel that progression, pushing things back means extra degeneration and also increases the chance of fatality from brainstem compression.

Hard collar when needed to protect my CCJ

Needing more and more Oxygen

Having surgery right now which is usually avoided in EDS patients unless it’s vital *(and with consultation with geneticist) cannot happen as I would bleed out.

I’ve had days where I have contemplated withdrawing from all medical services and the medicines for my heart, muscles, seizures and let what happens happens but I have a 10 year old boy who I keep my fight for.

I am not afraid of death I am afraid of paralysis.

I’ve lost so many years to this diagnosis, what’s another few months of waiting when it will take another massive danger away.

Some positive news, I was very lucky to have a one on one meeting with the Health Minister Simon Harris on Monday.

I have said from the start my doctors here where on board and helping me apply for the cross border directive for surgery.

The surgery is a massive cost plus the added cost to have a cardiologist on call , I need to be in Spain for 8 weeks and the scans I will need pre and post op. The money alone is putting so much pressure on us.

We have raised the deposit for surgery but are such a very long way off from the target.

As I made very clear to the Minister no one should have to fundraise for their life , no one should have to put their lives public on newspapers and tv to try get help for surgery. At the most vulnerable time in my life I should be able to go through this privately.

I have a 10 year old son it’s not like I can even say what the true stark reality of my case is publically for fear he would read it or see it.

The Minister was truley empathic and sympathetic and took that time to listen.

I am very thankful for the time I got and the questions he helped to answer going forward.

If you have followed my story i have battled with my health for 15 years now. I’ve had 4 long years of travelling abroad, 4 years since my first scan, 4 years of leaving my son, 4 years of fundraising from generous supporting people just to help me have quality of life. 4 years of neurological progression , 4 years of having my life and medical life being so public.

I’ve gone from having an active life to being critically ill, being on palliative care, being stable and critical again.

I’m weary and worn down it’s hard to keep going.

Treatment at home

Constant tests

The worst days in hospital

Good days now are when my joints are dislocated or partially dislocated and I have pain from that.

When my muscles are in spasm and cramping in my legs, when I’ve no appetite to eat. When my tremors are really bad.When i can have a shower with someone washing my hair.

These are my good days these are the days I’m happy to get. When once they were days I complained about. How has it gotten to this?

The bad days are indescribable and I won’t try but no one should have to go through this or live like this.

I am incredibly lucky to have a strong support system around me and I’m very thankful for that.

My mam Carer of the Year 16/17 And my son

Enjoying Christmas day

When my cat thought she would be the nurse

I am very thankful for all the help I have received over the last few years that has allowed my symptoms to be managed better so I have more days I can cope with.

I am very thankful to our local Senator who has helped so much and who asked the Minister to look at my case.

I can never thank the people enough who are still helping. To all of you that still help with fundraising and fundraisers and all the amazing businesses that help contribute I am so very grateful.

When I next update I hope to have better news.

I don’t like sharing my go fund me and fundraisers constantly. I understand completely how much people have going on in their own lives. I started writing this on Tuesday. Life is too busy and so hard sometimes.

But if you’re still reading this and you took the time to understand that everyday my body, my life isn’t even a guarantee then maybe you wouldn’t mind me sharing.

I am always extremely grateful although I do switch off from all of this sometimes.

My next appointments are with my General Consultant, Neurologist and Pain Specialist soon and I’ll hopefully update again.

Until then peace and love and a picture of my crazy cat on stripes x x

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