So for the last few months I have not been able to eat solid food and have been relying on Fortisip drinks to get the majority of the my calorie intake. People who know me know that I have been trying to lose weight but this isn't a healthy way to do it. Every time I eat solids I either throw it up or get really bad tachycardia, excessive sweating, stomach pain, nausea and other unpleasant symptoms. The amount of apathy I have come across from medical professionals has been staggering, because I am still overweight they aren't overly concerned about the fact that I'm losing weight so rapidly and can't eat. I'm overweight still so therefore it really can't be all that bad!
In the time that my stomach issues have been playing up I have lost nearly 3 stone. Usually these flare ups only last a month or so but this has been going on a lot longer than usual which is worrying me. My GP originally tried to refer me to the neurogastroenterologist (what a mouthful that is!) at the Royal London Hospital but they are currently not taking referrals and I had been discharged from their care a couple of years ago. Although I hadn't found them to be all that helpful before anyway, yes they got me on meds but their attitude was if I had another flare up that I should "manage it realistically", I'm not entirely sure what they meant by that. Either way none of my previous flare ups had been this bad or for this long.
The second referral went to the wrong person, I ended up seeing an upper gastroenterologist at Southmead hospital who specialises in bariatric surgery, not really what I needed! There wasn't really much she could do for me so she recommended that I see a gastroenterologist. It went wrong somewhere in the choose and book system because the request was actually for the gastroenterology department but somehow that got changed to upper gastro surgery department instead. It obviously was a waste of my time, energy and the upper gastro surgeon's as well.
So I then had to go back to my GP this time referring me to another local gastroenterologist who I found out specialises in Chrohns disease, again not really what I needed. At least she ordered some tests that were relevant. The Chrohns specialist gastroenterologist referred me on for a barium swallow which was rather disgusting and I haven't had the results from that so I'm not too sure the outcome of that yet. For those who don't know about the barium swallow you have to swallow this chalky sweet substance and they take pictures in the xray to see if things are getting stuck in the esophagus. I had been having swallowing problems for a while and my pills had been sticking around in my throat for hours. So hopefully it showed something, although knowing my luck it will all come back clear. Her usual course of treatment for what is highly suspected to be gastroparesis I am already on the maximum of all the medication that she would usually have prescribed, that doesn't bode well when your stomach is too full to complete an endoscopy 16hrs after last eating, whilst on the maximum dosage of the medication that is supposed to help. I was told that my next options are tube feeding of some description which obviously is a last resort option. She said she was happy for me to be referred on to a specialist in London who may be in the position to help me more than her. She gave me a slip of paper to go to reception for an appointment in 6 months time but admitted that there weren't any appointments available in the next 6 months! So what I was supposed to do with my weight dropping like crazy for the next 6 months I'm not sure.
I had been in touch with a few friends on Facebook who recommended that I see the gastroenterologist at UCHL as they had seen her and said that she was good. I phoned this specialist and was told that the waiting list was only 2 months and that they could get me in sooner if it was urgent. I thought great! So I took the name, phone number and other vital details to my GP and their response was incredibly underwhelming. They were very reluctant to refer on to the specialist in London because I was under the care of the local "specialist". They had to really make sure that this was the right person this time because of the three previous failed referrals. I had to do a lot of hand holding and persuading to finally get them to do the referral to UCHL. It was only when I mentioned that I had ran in to Dr Cohen (Pain Specialist and Rheumatologist from RNOH Stanmore) at the HMSA conference, that Dr Cohen said that I would lose my place on my rehab course that I'm supposed to be going to at the end of August if I couldn't get my calories up that she finally yielded and sorted the referral.
I am now waiting to hear back from UCHL. I explained the importance of getting this sorted ASAP as I'm losing a lot of weight and the above rehab course reason. It has gone to the consultant but hasn't been input into the computer system yet so the secretary couldn't update me with what is happening. The consultant was on leave last week and is now working through the backlog so I'm really hoping to hear from them in the near future. This would have been pretty stressful for anybody but having the extra anxiety that being on the autistic spectrum brings means that the last few months have been very stressful.
It's countdown until Stanmore, only 19 days to go. I wish this flare up would resolve itself because I've been waiting 16 months to get on this course! I really hope that I can see them soon!I will update you all when I hear anything more from UCHL.
Showing posts with label disability. Show all posts
Showing posts with label disability. Show all posts
Thursday, 7 August 2014
Tuesday, 9 April 2013
Stanmore, 1 year on.
On Friday 5th April I went to RNOH Stanmore for my 1 year follow up appointment. I still cannot believe that it has been over 1 year since I was in, the time went by very quickly. The last time I was there the ward was still closed after the flooding under the floorboards had happeend. Now that has all been fixed and they have swapped the mens and womens wings around so it was quite disorienting.
The first part of the follow up involved a group session to refresh things in our memories, catch up with how everyone was doing and any helpful tips that people have picked up along the way. It was very interesting and I was quite pleased that on the whole it was a positive experience with very few negative comments. It was nice to see some familiar faces, I got chatting to some of the people who had been on a previous course too. They hadn't heard of e-motion/power assist for manual chairs so I told her about that, so I was useful for something!
After the group session I had a one to one session with one of the psychologists. I had seen her for a few sessions in the last week before I had left. We talked about how I was doing and what I wanted to do in the future. I expressed some concerns about ongoing needs going forward once I am discharged from there. I was very concerned about the lack of knowledge locally, most drs don't know what to do with me. We also talked about a possible second stay, 2 weeks instead of 3 weeks. Part of the plan for the second stay would be intensive physio and psychology sessions, I won't need to go in for all the other sessions that I had already been to last stay.
They have made some changes to the program since I was last there. One of the big things was that before you only routinely went to the psychology sessions if you were on the pain management program but not the rehabilitation one. Now both groups of people do the psychology sessions, as they figured out that both groups of people had needs for them. I think that was one thing that was overlooked while I was there, as for my group you had to ask for the help and I wasn't confident enough to do so until the last week, days before I was leaving.
The psychologist is going to put forward the recommendation that I go for another stay, then it will be up to Dr Cohen to say yes or no. Apparently I shouldn't have a problem getting in for another stay because I can show that I'm trying to do the right thing and am applying the things that I have been taught so far. I'm seeing Dr Cohen in May so hopefully it wont be that long of a wait until I know whether I will be going again or not.
The first part of the follow up involved a group session to refresh things in our memories, catch up with how everyone was doing and any helpful tips that people have picked up along the way. It was very interesting and I was quite pleased that on the whole it was a positive experience with very few negative comments. It was nice to see some familiar faces, I got chatting to some of the people who had been on a previous course too. They hadn't heard of e-motion/power assist for manual chairs so I told her about that, so I was useful for something!
After the group session I had a one to one session with one of the psychologists. I had seen her for a few sessions in the last week before I had left. We talked about how I was doing and what I wanted to do in the future. I expressed some concerns about ongoing needs going forward once I am discharged from there. I was very concerned about the lack of knowledge locally, most drs don't know what to do with me. We also talked about a possible second stay, 2 weeks instead of 3 weeks. Part of the plan for the second stay would be intensive physio and psychology sessions, I won't need to go in for all the other sessions that I had already been to last stay.
They have made some changes to the program since I was last there. One of the big things was that before you only routinely went to the psychology sessions if you were on the pain management program but not the rehabilitation one. Now both groups of people do the psychology sessions, as they figured out that both groups of people had needs for them. I think that was one thing that was overlooked while I was there, as for my group you had to ask for the help and I wasn't confident enough to do so until the last week, days before I was leaving.
The psychologist is going to put forward the recommendation that I go for another stay, then it will be up to Dr Cohen to say yes or no. Apparently I shouldn't have a problem getting in for another stay because I can show that I'm trying to do the right thing and am applying the things that I have been taught so far. I'm seeing Dr Cohen in May so hopefully it wont be that long of a wait until I know whether I will be going again or not.
Saturday, 19 November 2011
Parking
Where we live all the flats except for the two ground floor flats have a garage. We have parking spaces assigned to us because we don't have a garage. The spaces are numbered yet people keep stealing our space, normally one of the other flats or people visiting them. We have ONE car, if they want to have more than one car they can sodding well go find somewhere else to park it, or y'know actually use the garage to park the car in instead of as an extra junk room!
I need to contact the council to get our space changed to a disabled space because our neighbour has a big white van and that leaves us very little space to park our car and still have room to get my wheelchair round to the passenger door.
This evening when we got back to find someone parking in our space yet again it really annoyed me. We had to park next to them which blocked in 3 of our other neighbours cars and I couldn't get the wheelchair up to the passenger door as there was barely enough room for me to squeeze through let alone a wheelchair!
This probably seems rather minor but it really pisses me off because we have the one car and the one space and people who have more than one car keep using it because them or their visitors can't possibly walk just around the corner! It's just damn well inconsiderate.
I need to contact the council to get our space changed to a disabled space because our neighbour has a big white van and that leaves us very little space to park our car and still have room to get my wheelchair round to the passenger door.
This evening when we got back to find someone parking in our space yet again it really annoyed me. We had to park next to them which blocked in 3 of our other neighbours cars and I couldn't get the wheelchair up to the passenger door as there was barely enough room for me to squeeze through let alone a wheelchair!
This probably seems rather minor but it really pisses me off because we have the one car and the one space and people who have more than one car keep using it because them or their visitors can't possibly walk just around the corner! It's just damn well inconsiderate.
Tuesday, 29 March 2011
Saturday 26th March March
On Saturday 26th March, Emily, my mum and I made our way from her flat in Woolwich to Savoy street near the Embankment to meet up at the disabled meeting point with the WTB crowd. Lisa had kindly sorted and ironed on transfers to tshirts that we wore at the protest. After we started getting going we had to make our way through the crowds up to the front, which was rather challenging trying to get the people in wheelchairs past the massive amounts of people that were in the way. This was rather poorly planned in that respect.
Due to my own bad planning I ended up having to take my crutches for the day, I never normally use my crutches for that long in a day, only for short distances. I must admit that I stupidly pushed myself far too hard trying to keep up with everyone, trying to get through the crowds I was jostled about quite a bit and I spent most of the parade route with my joints not really in place. Instead of listening to this pain I kept on going way beyond what was reasonable, and I am certainly paying for that now.
Despite all the hype in the media, what I saw was on the whole peaceful. It was really inspiring there was such a diverse crowd of people, people of all ages, races, religions, disabled, non-disabled and so on. After we got to Hyde park we made our way over to soho square, but by that point I was in so much pain I was on the verge of passing out, I was having some pretty major pots issues and I needed to stop. This meant that I missed out on seeing the comedy gig which happened in soho square in the end, and I really wanted to be there, but I just wasn't up to it. Mum, Emily and I went off and had some lunch before making our way back to Hyde park.
It was while we were eating our lunch that we saw a few masked individuals run up to Oxford Street, but there seemed like there were very few there not really enough to cause such a big fuss that was all over the media. It definitely felt like there were way more police than there were troublemakers. While we were on the way to the underground we went past a mcdonalds that had broken windows and looked like it had a paint bomb thrown at the windows. Even then the damage didn't look that extensive, that being said it was still pretty early in the day at this point so the situation could have got worse after then.
We got to see some of the people speak at Hyde park and Emily took a fair few pictures from that day which was nice. There was even a disabled speaker which we managed to catch. After Hyde park we made our way back over to Victoria where we were getting our coach from, at that point I couldn't even put any weight on my left foot which was rather swollen and deformed so we had to sort that out before getting on to the coach.
We got home around 11:30pm in Bristol and it had been a rather long weekend. It was really worth it to see the WTB people and to get to the march, sometimes it really is worth the pain. That being said next time I really need to arrange a chair as I was in a lot of pain from a couple of mins in, it was only adrenaline and a boatload of painkillers that kept me going that weekend.
Due to my own bad planning I ended up having to take my crutches for the day, I never normally use my crutches for that long in a day, only for short distances. I must admit that I stupidly pushed myself far too hard trying to keep up with everyone, trying to get through the crowds I was jostled about quite a bit and I spent most of the parade route with my joints not really in place. Instead of listening to this pain I kept on going way beyond what was reasonable, and I am certainly paying for that now.
Despite all the hype in the media, what I saw was on the whole peaceful. It was really inspiring there was such a diverse crowd of people, people of all ages, races, religions, disabled, non-disabled and so on. After we got to Hyde park we made our way over to soho square, but by that point I was in so much pain I was on the verge of passing out, I was having some pretty major pots issues and I needed to stop. This meant that I missed out on seeing the comedy gig which happened in soho square in the end, and I really wanted to be there, but I just wasn't up to it. Mum, Emily and I went off and had some lunch before making our way back to Hyde park.
It was while we were eating our lunch that we saw a few masked individuals run up to Oxford Street, but there seemed like there were very few there not really enough to cause such a big fuss that was all over the media. It definitely felt like there were way more police than there were troublemakers. While we were on the way to the underground we went past a mcdonalds that had broken windows and looked like it had a paint bomb thrown at the windows. Even then the damage didn't look that extensive, that being said it was still pretty early in the day at this point so the situation could have got worse after then.
We got to see some of the people speak at Hyde park and Emily took a fair few pictures from that day which was nice. There was even a disabled speaker which we managed to catch. After Hyde park we made our way back over to Victoria where we were getting our coach from, at that point I couldn't even put any weight on my left foot which was rather swollen and deformed so we had to sort that out before getting on to the coach.
We got home around 11:30pm in Bristol and it had been a rather long weekend. It was really worth it to see the WTB people and to get to the march, sometimes it really is worth the pain. That being said next time I really need to arrange a chair as I was in a lot of pain from a couple of mins in, it was only adrenaline and a boatload of painkillers that kept me going that weekend.
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