It's been a long time since I last wrote a post on this blog; last August in fact! So first, let me apologise for being so quiet on what was meant to be a place where I regularly update you on what's been going on in my life. The last five months have been a bit of a roller coaster, and I've struggled to keep up with all my commitments, so unfortunately some things, like this blog, fell by the wayside. I kept meaning to update, but every time I thought about it I couldn't get my head around how to catch you up with everything that's gone on, so put it off again. But I feel like it's been too long now, and I really want to have a more relaxed space where I can just post odd bits and pieces more related to my health. I love my main blog - it's a space I can feel like me and indulge in my loves, like beauty and fashion, without always having to think of my health. But I have realised I also need somewhere that I can just pour out all those things in my head that I struggle to make sense of, and I think this blog fulfils that purpose.
If you hadn't noticed (or are a new reader) I have decided to change the name of this blog from 'Unicorns and Floral Crowns' to 'Zebra Crossing.' When I originally started this blog I just couldn't think of a name I liked, so ended up combining a couple of things I love. But after a lot of thinking, I decided I wanted it to reflect the fact that this will be a place I can talk about my health, and Zebra Crossing came to mind. People with EDS are often referred to as zebras, if you were a little confused where the zebra came from! I've been thinking about the best way to bring you up-to-date so I can start posting more regularly, and have decided to break it down a month at a time, doing a quick round up of what happened each month. I hope it won't be too long and boring!
August 2015
In my last post I told you about having a seizure while I was in hospital waiting for an operation, so a lot of August was spent recovering from that, and my holiday in Cornwall. I had an appointment with an orthopaedic specialist about my hips, which have always caused me a lot of problems. As I expected, she said it is due to my EDS and the connective tissue not holding the joints together properly. I'm giving physiotherapy a try, but there is the possibility that I may need surgery at some point in the future.
My Dad also arrived home from Japan, which was lovely, as I'd really missed him being away for three weeks. It was great to hear about all his adventures, and he brought us back some lovely presents, including a beautiful traditional Japanese costume for me.
I also saw my Neurogastroenterology Professor up in London, which was fairly uneventful. We talked about me coming off Tramadol so I can try a new drug to try and improve my digestive motility, but decided I needed to wait for my appointment with the pain consultant for guidance. At the end of August I had my appointment at the 'First Fit Clinic' and saw one of the Neurology Registrars. He referred me for an EEG and sent my brain and spine MRI to be looked at by a specialist radiologist.
September 2015
At the beginning of September I met up with my college friends for dinner, which was so lovely, and was exciting to chat about starting on our university courses. We're all doing different things at different places, so won't be able to see each other that often, which is a real shame as we all get on so well. Around the same time, I also had to head up to London for some gastrointestinal physiology tests, which weren't particularly pleasant. Thankfully they didn't pick up any problems with the muscles they were investigating, although it does mean we don't have any answers for some of the symptoms I've been experiencing.
During the second week of September, I had to make an appointment with a different GP, as mine wasn't available, to discuss the fact I had found a lump in my right breast. I convinced myself it was nothing and would go away after a week or two, but it didn't, so my Mum encouraged me to see the doctor. I was referred to the breast clinic for investigations, but was told to try not to worry (easier said than done!)
On the 14th September, I had my induction week at university. To say I was terrified would be an understatement! But it actually went really well - I met my support worker, who is lovely, and started to get to know my course mates and lecturers. I even went to the course social, and ended up sitting round a pub table with a load of men, as none of the other girls had turned up!
The week after my induction at Uni, I had to go to Chertsey for my EEG. For those that don't know what happens, they spent ages measuring my head and marking it with a red pencil (not great when you have bright red hair!) They then stuck lots of little electrodes to my scalp, which were connected to a computer. The whole test ended up making me feel quite unwell, especially when I was asked to watch a flashing light. As soon as I got home I jumped in the shower to try and get the horrible glue out of my hair - it took a few rounds of shampoo before I felt human again!
October 2015
At the beginning of October I started a nine-week Pain Management Course, which was run by a Health Psychologist and Physiotherapist. We also had visits from a Pain Nurse, and also a family session. The aim wasn't to get rid of our chronic pain, but instead to equip us with coping mechanisms to try and make it as 'easy' as possible to live with chronic pain.
In October I also celebrated my 27th birthday, which you can read a little more about in this post on my main blog, so I won't go into detail about it here. At Uni, we had our first trip to a Magistrates Court, which was so interesting (although rather stressful trying to write down all the information we needed to write up a report of each case!)
After my referral to the breast clinic, I was given an appointment to have an ultrasound so they could have a proper look at the lump. The doctor that did the scan was so lovely and really put me at ease while she checked out the images on her screen. She gave me the news that she was quite certain it was nothing to worry about, but that I would need to see a breast surgeon to have it confirmed, which made me feel a little less anxious. I also had an appointment with my Urologist, who confirmed I had been put back on the list to have an operation with the hope I can get rid of my permanent catheter.
Towards the end of October, I had my birthday party - a Mad Hatters Tea Party, with some of my spoonie friends. Again, you can read a bit about it in this post on my main blog, although unfortunately I didn't get round to doing a whole post on it. On the 31st, my friend Lilli came round and carved pumpkins with myself and my sister, Bekkah. I think they turned out pretty awesome!
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| The cake I had made for my party |
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| We went for a Disney theme with our pumpkins |
November 2015
November brought with it the Blogger Event that I had spent months organising. It went off without a hitch and it was so great to meet some of my blogging friends. You can hear all about it in this post if you'd like to know more about what happened. I also had my appointment with the breast surgeon, who confirmed that the lump wasn't cancerous, but that I needed to keep a close eye on it, as it has the potential to turn into something more sinister. Not quite what I wanted to hear, but at least I know what I'm dealing with.
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| A photo from the Blogger Event, taken by Dawn from Dear Mummy Blog |
On the 18th November, my dear Granny sadly passed away. It was such a shock to all of us and really knocked me for six, as it was my Dad and I that found her when we went to wake her in the morning. Since then it's been a really difficult time and it feels incredibly quiet at home without her. I wrote a post in memory of her, which you can read here.
December 2015
At the beginning of December I had my appointment with the Pain Consultant, who was fantastic. He had a good knowledge of EDS and carefully looked through my latest MRI scans. He found that I have severe disc degeneration in some of the discs in my spine, which could be contributing to my pain, so has put me on the waiting list for steroid injections under sedation. He also advised me about how to reduce my Tramadol, and started me on Pregabalin. I also saw my Rheumatologist, who was concerned about how weak my hip joints are, so is advising my physiotherapist on some exercises I should try.
The 7th December was my Gran's funeral, which was very emotional. I managed to read a poem at the service, but there were a lot of tears all round. It was a beautiful service though, and we were overwhelmed by the support from friends and family. A lot of her carers came to pay their respects, which was incredibly touching, as they've been part of our lives for so long.
I also saw my Professor again, who recommend I look into some new dietary guidance from Dr Heidi Collins, to see if it will help my digestive symptoms at all. He also wants me to start on Prucalopride as soon as I'm able to completely come off my Tramadol. Alongside this, we had the usual Christmassy things going on, which was pretty difficult having just lost my Gran. But we had some nice family time together, and I caught up with a few friends as well.
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| I went to our local Christmas Market |
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| Our Christmas Tree, with decorations to remember the Grandparents I've lost |
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| Some Christmassy things I did with my friend, Sarah |
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| My siblings and I went to Longleat to see The Festival of Lights |
January 2016
At the beginning of January I had an appointment with my local Gastroenterologist, or at least I was meant to. I turned up at the hospital to be told the appointment had been cancelled, but no-one had bothered to tell me! In the end we waited for her clinic to finish so I could still be seen, but because we didn't have my notes it wasn't particularly productive. I told her about the diet my professor recommended, but she said she was skeptical it would make a difference. She also brought up the fact that tube feeding may have to be something we consider if dietary changes don't help.
Towards the end of January, my Dad drove me all the way down to Kent for an appointment with a POTS specialist. There was a long wait, but it was worth it to see someone who really understood what's going on with my body. He recommended the usual lifestyle changes and wants me to be admitted to hospital to start me on Midodrine. He is also referring me to a urology nurse who specialises in EDS urology problems.
February 2016
That brings me to where we are now! February has been relatively quiet so far with regard to my health. I've been seeing my physio for acupuncture, which I think has helped a little by taking the edge off my pain. I've also started having some bereavement counselling, which is going well so far. And I saw the Dietician, who is trying to help me with this new diet. But apart from that, I'm being kept pretty busy with Uni work, blogging and planning for two weddings this summer (both of my brothers are getting married within six weeks of each other!)
So that's about it I think! If you've made it this far, then you deserve a gold star or some chocolate buttons! I hope this has given you an idea of what's been happening over the last few months (without boring you to death!) And hopefully I can start writing here a bit more regularly now, so I don't have to keep doing these ridiculously long posts!
I'd love to hear your updates about what you've been up to since I last wrote, so please feel free to comment. And if you'd like to hear about anything in more detail or have any questions, I'd love to hear what you've got to say.
Until next time, take care,
Love Jenny xx
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