Monday 3rd October 2016

Today has been one hell of a day and one that I wish I could just erase from my memory forever.

I don't think I mentioned in any of my previous posts but today I was suppose to go into hospital for a oesophgeal dilation and peg tube replacement but I ended up discharging myself about 5 1/2 hours after being admitted. 

The reason why I discharged myself from hospital was due to them having none of procedures that I was going in for booked which meant I had no idea how long I would have to sit there in hospital for, it could have been a week, 2 weeks, a month. 

For a number of years now the oesophageal dilations have been done under x-ray guidance due to them being unable to get the endoscopy scope and guide wire past the stricture's. At interventional radiology they have access to these teeny tiny balloons because they do procedure's like angioplasty and renal stents plus it is a safer way to do it because they use contrast and can see the whole area with there x-ray machine. The other thing was if they can’t the peg tube up my oesophagus then the only way to get it is out through surgery and we all know my past history with wound problems. I also won’t be getting the same tube as I have now either and this other tube is known to fall out sometimes. None of what was happening was explained to me before I went in so I was under the impression that I was going in and getting it done the next day under x-ray guidance. Due to me being bombarded with all this I had ended up having a breakdown and it also triggered suicidal thoughts so I just had to get out of there. One of my main triggers for my anxiety is not knowing when things are being done or not knowing what is going on so this ends up triggering anxiety/panic attacks, I have been very open with my anxiety and what triggers it but it seems to fall on deaf ears. Even though I am at home now I have still been having anxiety attacks which are getting less and thankfully the suicidal thoughts have stopped now. I have a really horrible feeling already that what has happened today has caused me to go backwards with the agoraphobia, only time will tell I suppose. 

Well that is it for this post, take care everyone and til next time keep strong and keep fighting. 💗💙💚💛💜


previous post: Sunday 25th September

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Groups I have set up for my chronically ill family
The IBD family facebook group
Spoonie bookworms goodreads group
Spoonie warrior gamers steam group
Chronically ill and disabled equestrian's facebook group

Sunday 25th Setember 2016

Today has been an absolute disaster for me. I was suppose to be going to Redwing Riding School for a few hours to spend time and groom the horses and ponies but my stomach decided that it was going to play up, sometimes I really think that it does it on purpose. I love the riding school that I am at but the toilets are quite far away from where the school actually is, it's maybe a mile that goes uphill slightly. My biggest fear like every other person with IBD is not being able to get to the toilet in time and with the way my anxiety is it would probably cause me to have a panic attack plus the amount of times I would have trek back and forth to the toilet would just be too much. The good news is there is a toilet going to be installed at the riding school so that means I will be able to spend some time there even if my stomach is just acting up a bit amount. 

Another thing that hasn't gone too well is my teeth. It's not all bad the bottom set is completely fine, I can speak normally and drink with them in but due to my oesophageal stricture's I am not eating with them in for fear that I choke myself, have to bring stuff back up and they end up in falling down the toilet, lol. The top set of teeth on the other hand does not want to stay in though which is a real pest. They stayed in fine the day that I got them but ever since then they will not stay in, I have even been using fixodent which is an adhesive but no success. My dentist told me that the set that was likely to cause me the most problems is the bottom one but as usual I never do things the easy way, I have a review appointment with the dentist next week so hopefully I can get it sorted out.  

One good thing did happen this week and that was I got my new glasses. I should have had my eyes tested many years ago but due to the agoraphobia I never did get them tested until 6 weeks ago. It didn't take 6 weeks for them to be ready it's just that my anxiety kept getting the better of me and it took me a while to overcome it. As it had been 6 years since I last got myself new frames I decided to treat myself to pair and this time I decided to try a new look. For a very long time now I have always gone with black rectangular type frames but this time I decided to add a bit of colour. 

This pair are by a Danish company called Kliik and the frames iare the 536 in the colour fuschia black. I don't know if this happens in other countries but a lot of opticians in the UK including the one that I went to do the buy one get one free, so I took full advantage of this and got myself a pair of sunglasses too. 

I honestly can not remember who these ones are made by but there is a name on the leg says Rowan.

Well that is it for this post and I am sorry that it is a long one but I had so much that I wanted to write about. 

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Wednesday 22nd September 2016

Well hello everyone it's been a while and I am sorry about that but I went through a really bad period with my depression, one of the worst that I have had in a good few years. Thankfully I am doing better at the moment and hopefully that will continue for a while yet. 

I really wanted to write a post today because 5 months after I had to have my Crohn's destoryed teeth removed I finally got my new teeth!!!!!!!!!!!!!!!!!!!!!!!!!!

Sorry for the rubbish photo

So these teeth are just your traditional dentures because implants were not going to be suitable for me due to me being a high infection risk and having weaker bones. I am extremely pleased with how they have been made, the colour of the teeth and not beingperfectly straight makes them look so realistic. It really has been well worth all the anxiety causing problems and complications.

So these are what they look like when they are not in my mouth.

Due to me having such a small mouth the top set only has 10 teeth and the bottom has 11. It probably doesn't look that small in this picture but if I were to lay my dads false teeth next to mine it would show how small they are. Also due to me having an under bite instead of an overbite the top set had to be built up so that they met edge to edge so that's another reason why it took so long to get them. I was told by my dentist that I can wear the top one as much as I want but the bottom one I have to wear sparingly to start with and then build up. I am going to admit that they do feel pretty weird though and kind of bulky but I am sure that once I wear them more I won't even notice they are there.

That is all for today's, hopefully it won't be long until my next post. If you want to follow me on any of my other social media then just click on the links below, until next time folks. :-) x

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Monday 1st August 2016

Where do I begin, there is so many good and exciting things that have happened since my last blog post on here that I don't know where to begin, em lets start with my health.

So my physical health is what I like to call stable things aren't any better or worse. The 2 stricture's in my oesophagus are still causing the same old issues such as crushing pain in my chest that spreads up to my collar bone but I am still able to eat pureed food which is the main thing because if I couldn't eat pureed food I would probably be on TPN which I don't want. As for my stomach I still have good days and bad days but I got very good news at my last clinic appointment and that is the pelvic MRI scan that I had done in November showed that my small bowel to cervical fistula has healed up by itself. I am not a 100% sure but I think that it is quite rare for fistulas to heal up without some intervention. 

A few weeks ago I had a IBD clinic appointment and nothing new happened because nearly everything that was discussed at October appointment had not been carried out. I did find out what happened to the portacath procedure though, someone had decided that I didn't need it more! I was really mad at this because they are not the ones that have to be stabbed a billion times with a needles to get blood tests and cannula's. I have also not been able to get my iron infusion because I didn't have the port, the doctor that I seen at the clinic said that he would sort it out so I will be getting it at some point. Two other things that happened at the appointment is they are going to send me for a small bowel MRI study and organise to have my disgusting old peg tube replaced under a general anesthetic.

I am still currently waiting to get my false teeth. I had to cancel an appointment because I was sick and then my dentist had to cancel an appointment due to him being sick so it's taking longer then expected. I really hope that I will be able to get them in the next few weeks.

Also since I last wrote I have finally decided to take the plunge and set up an etsy store so I can sell a variety of handmade things. For a long time now I have been wanting to set up my own store but the reason why I haven't done it is I am scared that I will fail at it. In dream world I would earn enough money to call it my job and get off the benefit system but I find that luck is never really on my side.

That is all for today's post, sorry that it's a long one I just had so much to write about. Goodbye for now. 


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Thursday 23rd June 2016

So I am not sure if this depression is linked to my hormones like I said in my previous post. I started my monthly's in the early hours of Tuesday morning and it is now two days later and my depression feels worse, if it had been hormone related I think I would be feeling better by now. 

There is just so many thoughts going through mind, an example is my life is pointless, I am not doing anything worthwhile but how am I suppose to do anything worthwhile when my health is so screwed up. I have dreams and goals like any normal person but how do I achieve them with this crap body of mine. There is so dreams and goals that I want to achieve but number one on that list is having my own horse, competing, working with horses and teaching people to ride. As you can imagine though working in the equestrian world is a very hard and demanding but I don't think I will ever be happy doing anything else. 

My head hurts so much, I can't see a way out of this, I just want these feelings to go away, these thoughts are so scary, all I want to do is sleep because I don't want to feel emotions anymore.

Previous post: Monday 20th June

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Monday 20th June 2016

My brain is broken big time.

The depression has been really bad over this past weekend, which I think is being caused by my hormones as it is coming up to my time of the month. There is this condition called Premenstrual Dysphoric Disorder (PMDD) which is a more severe form of premenstrual syndrome and apparently if you have a history of a mood or anxiety disorder, which I do it can mean you are at a higher risk of developing PMDD. My mood is low, I feel like my life is pointless but I don't feel suicidal which is good, hopefully it is just the hormones and I will feel better is a few days. 

One thing that probably hasn't helped is that this past Saturday I couldn't get to Redwing Riding School to spend time and go out on a hack. Every time I go there I have to get a lift from my dad and this Saturday my dad couldn't take me because he had something else to do. The thing is I can drive but the anxiety has made it hard and I am scared that if I have an accident that my insurance won't cover it. I really want to get back to driving because that would mean that my time there wouldn't be restricted, the woman who owns the riding school said that I could go there anytime and spend time with horses and ponies but obiviously my dad works full time. Before I can even think about driving again I need to get my eyes tested, I can't actually tell you when I last had them done, it must be more then 5 years ago. I have a phobia of someone putting something in my eye which is why I can't wear contact lenses so an appointment at the opticians is a massive anxiety/panic attack trigger, maybe one day I will get them tested. 


Previous post: Having all my teeth removed

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Having all my teeth removed

So a lot has been happening since I have last posted on here, so lets begin.

Since I last posted I have had all my teeth removed or should I say the 25 that I had left and on boy that was not fun. After having 2 ostomy surgeries, teeth removed and many other procedures I honestly didn't think that it would be that bad but boy I was wrong. Everything started out well, instead of being 5th on the list I was bumped up to 3rd because some people didin't turn up and the anaesthetist managed to get her hands on a paediatric cannula which was so awesome, it was when I woke up afterwards that things went really bad. I was told that they would load me up with local anaesthetic so that I wouldn't be in to much pain when I woke up but that was not the case, when I came round I was in sooooooooooo much and I ended up getting 10mg of morphine through the cannula. Despite getting all that morphine I was still pain, the only time I have ever been still in quite a bit of pain after an op was when I had my ostomy surgeries, I was suppose to be discharge home that evening but thankfully I wasn't. 

That night was horrendous, I couldn't get to sleep because my face was so swollen, the pain would not settle and they refused to give me anymore morphine. They did give me extra dihydrocodiene but it really didn't take the edge off.

Day 1 (Wednesday) post op wasn't any better, the pain was still bad and I was starting to feel feverish. I mentioned this to the nurse who then took my temperature which was slightly up so they gave me a fan. As the day went on I was starting to feel worse but they still insisted in discharging me, so I went home. In the early hours of Thursday morning my temperature went up to 38.1C and I couldn't take anymore paracetamol as I already had taken the maximum dose for the day. So as much as I hate doctor's I went to the out of hours which was a big waste of time because they couldn't do anything, they did phone the ward that I had been on but the doctor who was on the ward told me to go home and come back to the dental clinic for 9am. I went back to hospital for 9am, they had a look in mouth and said it didn't look like I had an infection but they were going to give me a weeks worth of antibiotics anyway. 

I can not tell you how annoyed I was with the doctor's at dental. The day before I had the surgery I explained that I am very prone to infections (basically every surgical wound gets infected)) and that last time I had my teeth out which was only a couple I developed an infection afterwards but for some reason they thought that I wouldn't get an infection. I get so sick of telling doctor's things. I don't understand why they don't listen to me, I am not like a normal person I have been sick for 16 years and I know how my body reacts to things.

I am so glad that this is all over and I never have to go back and get more teeth removed, unfortunately though this experience has made my fear of hospitals worse and because of that I have cancelled a few hospital appointments because my anxiety has been so bad. 



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