What have I been up to since I last wrote here I wonder. Mostly attending lots of medical appointments in London and Bristol with a few university exams for good measure.
At the end of April I had my appointment with the gastroenterologist at St Bartholomews in London this required us to leave at silly o'clock in the morning because it was a 9am appointment. We got there to find out that the only lift to the clinic was busted, because it wasn't our fault the nice gastro dr came down and we had the consultation in a downstairs room. The outcome of the appointment being that I've now been put on 4 new meds just for my stomach problems! All with differing quantities and how often they need to be taken. A few weeks later I received an appointment letter to go back for a whole bunch of tests. I have to fill in a whole lot of questionnaires, I don't think I've ever been asked so many questions about my bowel movements before.
At the beginning of May was my birthday and we spent this time in Brighton, Em had booked us into a hotel for the night before my birthday and my birthday itself. We had lots of fun, had icecream on the beach, cockles, played on the 2p machines on the pier, went shopping and ate way too much food. It was a well needed break before the start of the exam period.
The next week was spent taking exams, luckily for me the modules that I have to take had multiple choice exams and I have a scribe plus extra time. We never needed to use the extra time as the scribe read the questions out to me and I just picked the answers, in fact I didn't even need all of the normal allocated time. The exams were over by mid may though so now I just have to wait until 1st July for the results to be officially announced, although they will probably appear on the online system maybe a week or two before then, or at least I hope so!
Last week I saw a surgical podiatrist who was part of the Avon orthopaedic centre based at Southmead hospital. He did the normal prodding, poking and bending my ankle a lot further than even I thought it was capable of going! After looking at it he decided that he should probably get the orthopaedic surgeon in to talk me through my options. Basically because of the faulty connective tissue once the ligaments are stretched they wont go back, he offered up the surgical solution of ligament reconstruction but as I have seen with others online that kind of surgery doesn't tend to stick with people with EDS. I didn't want to have to have any kind of surgery unless absolutely necessary just because I know with my crappy healing that it would be a long hard road ahead and I don't have the time with uni to be taking that kind of time out. Was told that if I change my mind then I can contact them any time to be seen again, in the mean time I've been referred to their orthotics team to try to find something that will hold the ankles in place.
This week we headed over to Watford to stay over last night before heading over to Stanmore for an appointment at the RNOH. I had heard that their programme was very good and a friend of mine had already been there before. I was seen by Dr Cohen who was very nice, I had met her once before at the HMSA residential. She took my history and asked me a whole bunch of questions. She tested a whole load of my joints and the general consensus was that I am rather bendy, affecting all of my joints. That I was doing the right kind of things in terms of painkillers and that in the meantime I should look at my pacing and see if I can improve that as I am not doing it that great. Also I need to get my sleeping sorted out, maybe try to figure out what stressers I can avoid that feed into the whole chronic pain cycle.
Dr Cohen said that she would refer me onwards to their pre-assessment team whose waiting list is a few months and they would go into more detail about the kind of thing that they do. We're aiming for me to go in hopefully sometime next easter. That'll give me a chance to get my stomach problems under control, or at least I hope so and maybe get my weight going down, but we'll see. I'm hoping that I'll have sorted a new chair out by then too. My plan is to try get my eating back under control and maybe start going to the disabled swimming at the local swimming pools. Also I have a plan from the gym about working on my shoulders so I know what I'm doing there too. All with the aim of being able to manage a manual chair rather than relying on a power wheelchair as you aren't so reliant on battery power lasting then.
Coming up in June I've got the testing for the stomach problems, going to see someone about the dizziness also at Southmead hospital and also finally seeing an Endocrinologist after being on T for more than 5 years now. Shall be interesting the results of all this testing and appointments, I'm so glad that we have the NHS and that I have managed to get seen in a reasonable time by some really great doctors who know a lot about how all this affects me. I'm just waiting on an appointment to see someone about the autonomic dysfunction side of things and then I've seen everyone I need to see I think. Good times!
