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Controlled chaos

Not my usual medium (I mostly work in epoxy resin, artist books using word collage and blackout poetry and also sometimes acrylic pouring) but I've noticed almost everything I make is controlled chaos in one form or another. I'd not done paper marbelling in years but the process of putting something in motion and attempting somehow to control the random and changing movement of the material was very familiar! I'm not unaware of the parallel with my life! The unpredictable nature of #autoimmune and #autoinflammatory conditions often means little control or rather in my case a desperate (and often unfruitful) attempt to clamp some control down over my body and life when it feels like its going haywire.

#chaos #chaoticcrafting #BehcetsDisease #neurobehcets #Plasmaexchange #MentalHealth

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My Plasma Exchange - Day 3 of 3

We’re on the final day!! I’m going to be honest, I’m really feeling the strain! I’ve woken at 6 again to take my meds, unhook my feed and give my tubes some extra flushes of fluid. Cannulas are still in and wrapped up but they have been causing me so much pain! I think i will cry if they don’t work today and they need replacing! I’m feeling drained and physically exhausted. I’m still trying to stay positive but it’s hard when I’m feeling so weak and lifeless. I’m just focusing on getting home to my family, my beautiful doggies and of course my wonderful friends! If you are reading if this and will be seeing me soon, then cuddles will be very much appreciated!! I’m a little grouchy, this is physically the worst I’ve felt since I’ve been here. I’m sore, tired and generally feel pretty horrendous! I’m praying that today will be easier so we can finish up a little earlier and head home!

I’ve had a really tough morning! We hooked up to the cannulas but they have stopped working so have had to be removed and replaced. We’ve had a massive task of getting new cannulas in. After 7 attempts and an ultra sound, we managed to get some cannulas in but they still didn’t work. I’ve been in so much pain while they’ve been trying to get the needles in as they are way bigger than normal. I’ve been flushed with fluids and we’re going to have a little break and have one final attempt. If this doesn’t work, we will have to stop for today and I’ll need a central line for my next round of treatment.

My friend Emma came to keep me and mum company for the afternoon which was so lovely and just what I needed after a tough morning! Eventually we managed to get one cannula working really slowly so we managed to get some exchange working right at the end of the day and this was a mixture of both manufactured and donated plasma! We weren’t able to send my bloods off for research on this occasion but I’m hoping maybe next time will be more successful!

This isn’t a one off treatment, I will need a 3 day exchange once every 2 months for 6 months and then once every 3 months from then on. My next exchange will be in early October but this will then be reviewed depending on how well my body tolerates it next time.

I haven’t had a great experience but I’m hoping it will get easier. I feel totally drained and my arms are really painful! The most important thing I can take away from this is that I have managed to exchange some plasma! I’m trying not to focus on the negatives and I definitely don’t want this experience to put me off having it again because that could be a completely different experience!

I hope my blog updates have helped you understand what I’ve had to endure and a little a bit of what’s involved with a plasma exchange! If you’re waiting for a plasma exchange, please don’t be put off by this! Everyone reacts differently but whatever the outcome you will be well looked after! We are now on route back home! I cannot wait for my bed and cuddles from my pups! #BehcetsDisease #ChronicIllness #Disability #Gastroparesis #Plasmaexchange

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My Plasma Exchange - Day 2 of 3

I’ve woken up at 6am again to take my meds. I have to take them a few hours before the exchange starts as everything gets stripped away when they start filtering the blood from my Body. I’ve also flushed my feeding tube with double the amount of fluid than normal so I’m hoping this will prepare my body and help the plasma flow through a little easier.

I’ve been trying to stay positive - today is a new day and things are going to get easier. I know what to expect now and the cannulas are still in from yesterday so that’s two less things to worry about. I didn’t sleep too great but that was mainly because my mum was snoring - Sorry mum! She is with me for the duration of the treatment to help with the the things I struggle to do by myself, I appreciate this massively! So here goes day 2 - Let’s smash this!

So, the exchange was a little more successful today, we still had issues with my veins but yesterday’s cannulas worked so I didn’t have to go through the stress of having new ones inserted! the exchange was slow. We did try to increase it, but my body wouldn’t tolerate It so we just had to take it slow and steady and it seemed to work that way! I was doing really well and I was in such a positive head space! You can feel a “but” coming can’t you? I started feeling really unwell, I was shaking, vomiting and feeling really spaced out. My vision went for a period of time and I was totally out of it. The nurses gave me a fluid IV with vitamins etc and were monitoring me. It looked like the manufactured plasma was reacting with my body. This can sometimes happen as it’s a little more harsh than plasma from a human donor. Tomorrow, I am having a mix of manufactured and donor. This isn’t to say I won’t get another reaction as everyone is different but I’m hoping I’ll react a little better! I’m not too upset about this as I’m fully aware my body is weak. I am a little disappointed that I had issues again but this is only my second day and I’m heading in the right direction!

I’m feeling really washed out so I am resting up. The main thing I’ve taken from today is that I’ve managed another exchange and a little more than yesterday! This is an achievement in itself! I’m taking the positives away with me and tomorrow is going to be an improvement again! I’ve got this!! #BehcetsDisease #ChronicIllness #Disability #Gastroparesis #Plasmaexchange

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My plasma exchange - Day 1 of 3

So I didn’t get off to a great start, my feeding pump kept me up for most of the night with its alarm. I’ve woken up feeling tired and weak and obviously very anxious/nervous. My mums panicking a bit and keeps knocking my wheelchair into things. I’m starting to get a bit grouchy but reminding myself that it’s hard for her too and she obviously just wants things to go well as much as I do. I have received so much support which has made me realise that although It’s me that’s going through this journey, so are all my family and friends and it’s so nice to be reminded of how much I am loved and cared about.

Inserting the cannulas was a nightmare. The needles have to be a lot bigger for this procedure so I was expecting to have a few issues as my veins aren’t great! we did finally manage to get one Cannula in my arm and one in the back of my hand which I was over the moon about as I was dreading having to have a central line! I was feeling really positive and ready to start my treatment!

Unfortunately my positivity didn’t last too long as we encountered a few issues. I started feeling sick and dizzy. The machine then kept sounding the alarm. My body didn’t have enough fluid to cope with the new plasma so it couldn’t push it around my body (This is due my peg feed.) We also encountered problems with my veins and one of them eventually gave up! I was starting to get myself really stressed and worked up. I was so fed up of all the stopping, starting, prodding and poking. I started to feel like I had failed, I had my hopes set on this treatment and once again it’s just something else that’s not gone to plan.

I was put on fluid drips and we tried the exchange again really slowly which seemed to work better. We’ve finished for the day and the New cannulas are still in and wrapped up so I don’t have to go through the trauma again tomorrow. I’m going to flush my peg with double the amount of fluid tomorrow morning so hopefully my body will have enough fluid to tolerate the plasma.

How am I feeling? I feel a little deflated if I’m
Honest, I was hoping that things would go smoothly but I guess these things happen and I shouldn’t beat myself up about it! I need to keep reminding myself that my body is extremely weak so this is expected.

To sum up after day 1, I am physically and mentally exhausted! I’m a little apprehensive as to what tomorrow may bring but I know I’m in good hands! The nurses had a good chat with me before I left and I do feel a little less deflated now. I’m trying my best to let go of the negatives and remind myself that Although there were obstacles, we still managed to exchange some plasma today and that’s an achievement! I’m going to log off for a little bit now and try to chill out and re charge. Tomorrow is a new day. #BehcetsDisease #Disability #ChronicIllness #Gastroparesis #Plasmaexchange

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My Plasma Exchange - The night before

So I wanted to document my plasma exchange journey and share my experiences/feelings towards the whole process with the aim to hopefully help other people like me who are going into it pretty blind.

As you may or may not know, I suffer with Behçet’s disease which is a very rare and chronic auto immune condition. I am currently suffering very severely with this. I suffer with seizures, loss of Vision and regular dizziness. I have gastroparesis which means I am tube fed via a pegJ as my stomach cannot tolerate solid foods. I also suffer with swollen joints and muscle pain which causes weakness in my entire body. I also get out of breath very quickly and generally have to rely on walking aids / wheelchairs to get myself around. I also suffer with sever lesions, ulcers and blisters on a regular basis and suffer with chronic fatigue.

I have lost all independence, I’ve had to surrender my driving license and completely lost my old life. Ive lost a lot of weight and feel totally unrecognisable to the person I used to be.

After a long period of tests and trying different treatments, my neurologist in London suggested and put me forward for a plasma exchange. Plasma exchange, also known as plasmapheresis, is a way to "clean" your blood. The liquid part of your blood gets replaced with plasma from a donor or with a plasma substitute.

My neurologist is hopeful that the plasma exchange will have a positive impact on my condition. It may not cure me but he’s hoping it’ll give me a better quality of life.

So that’s the story In a nut shell so far .. im currently driving up to London in preparation for my treatment to start in the morning. Am I scared? Yes! I think I’m more scared of the unknown, I’m nervous about how they’re going to insert the cannulas as my veins are pretty useless. I’m worried about side affects and any reactions I may have as my body is pretty weak but I know I’ve got to give this a good shot because even if there’s a small chance it could help me, then that would massively change my life for the better!

I’m going in with a clear head and a positive mind set! Im going to try my best to rest up when I get to the hotel! So ... this is the start of my exchange journey! Apologies in advance for bombarding with posts over the next few days but I’m hoping this might be of help to some one!! #ChronicIllness #BehcetsDisease #Disability #Plasmaexchange #Gastroparesis