Me and My HulkFoot™

Hello Everyone! 

Well, today was the day I got the results of my SPECT/CT Scan, and learned what the next step would be for HulkFoot™ and I. 

Since I last saw my consultant, I have injured my knee as a result of HulkFoot™'s chronic instability and inability to hold me up. This in turn is causing my back condition to become aggravated. Joy. 

This morning, I felt sick with nerves. My appointment was scheduled for 9.00, and by 9.30 my poor fingers were sore from all of the wringing I had put them through. I literally could not keep them still! 

The images from the SPECT/CT are very pretty things. They are lovely and colourful - much more interesting than the usual MRI and XRay black and white! There was a three page essay report back, which always fills you with confidence. Then there is the  "there is good news and bad news" line comes tumbling out. 

The good news is, I will not be operated on any further. Huzzah! 

The bad news is, the reason they won't operate is that it would make no improvement whatsoever to the state of HulkFoot™. 

In the images, there was a large white splodge where the main part of my foot is. I asked what each of the colours meant, and white means very unhappy, inflamed and painful. It had been anticipated that the area of pain would be the major ligaments, so this was not expected at all. Interestingly, it showed the same issue in my left foot. 

Each and every one of the tiny connective tissues in the main structure of my foot is pretty much useless. My bones have been taking all of the impact with every movement that I take, and now they're pissed off about it! They are angry, swollen and want me to know about it. Hence HulkFoot™ and it's gargantuan size, and why LeftNotQuiteAHulkFootYet™ has also started to swell and get a bit on the sore side. 

There is no cure for this. It's a part of my EDS which has manifested itself, and it is a case of management rather than repair. I have been referred to a member of the Physio team who has an interest in EDS and connective tissue disorders, with (hopefully!) a view to having some more Hydrotherapy as part of the programme. I have also been referred to the Orthotics team to get some custom made Ankle-Foot Orthoses made. I also have to lose some weight. A fair bit of weight. This is a good thing to focus on, so I will be setting a target and updating here with my progress.

Possibly the most exciting development of the day is that my consultant trained at the Royal National Orthopaedic Hospital in Stanmore. If any bendies are reading this, they may already be aware, that the RNOH offer a 3 week residential rehabilitation course. Specialist physiotherapy, hydrotherapy, and retraining in areas that bendy people don't necessarily do correctly. He has written to my GP to request I am referred there, as I am a suitable candidate. Fingers very crossed that I will be accepted! 

So, as of 6/8/2013, a new path has opened up for me. I'm not sure yet what it holds, and I'm certain it won't be easy. But I've taken my first step/hop/roll on it. 

Don't You Hate It When...

The thing you have been dreading comes to pass?

Since I hurt my back, I have been juggling that issue, with my ankle problem, and any other temporary EDS incidents which crop up along the way. 

It'a a horrid cycle - my ankle gives way, leading to a knee sublux or dislocation, which then both aggravate the pain in my back. Repeat for every step I take. 

I was taken off of crutches and put onto a zimmer frame when I hurt my back - and told I wouldn't be safe to go back onto them until they knew what was causing the nerve problems and severe pain. I have been using that to move around, but because of my back I have to stay weightbearing through the frame. When HulkFoot™ is giving me severe grief, I cannot give it a rest with non weightbearing time. So as time has gone on, my pain levels in other joints have been increasing. I have been wondering how long it would be before my knee would pick up an injury.

I don't have to wonder anymore. I woke up this morning screaming in pain. My knee is approximately the size of an orange. I am unable to bear weight on it without crying in pain. The pain is shooting both ways - up to my hip, and down to HulkFoot™. I am profoundly grateful that I do not have full feeling in my legs at the moment - if it hurts this much now, I cannot bring myself to think how badly it would hurt normally. 

I have a real conundrum now. Do I visit the hospital? Is there really anything they could do for me? I am already in possession of a zimmer frame, and on large doses of pain meds. An added issue is that I am home alone. My Mum and Dad are on holiday in Malta, Uberman is at work, and so is my brother. I have no cash here at all for a cab. So I physically couldn't get there anyway. I am due to see my ortho consultant on August 6th. Can I hold out until then? 

I am terrified. I desperately wish someone was here to try and help me be rational. I feel like I'm falling. If my knee is damaged, it will put me so much further back. I don't want to be further back. I want to move forward. I need a hug.

Scared.

My Visit To A New Hospital - The Royal Free

Good Evening (or morning, by the time I finish this!)

So last Friday, I took a trip to a new hospital. This is quite an achievement for me - I've been to many! I went to the Royal Free Hospital in Hampstead Heath, London. The reason for my visit was a SPECT/CT Scan. 

I was referred for this scan by my new ankle consultant. He's quite awesome, and I have a lot of faith in him - which I don't get with medical professionals very often any more. I had my ruptured ATFL Ligament in the HulkFoot™ repaired last year, after 6 months of telling the local hospital that something was wrong. 

It can be very difficult to explain EDS to some A&E Staff - they haven't all encountered it before. I was originally told it was just a sprain, and that I would be fine. When I argued that it just wasn't right, I was told they would make me an appointment for 6 weeks time, but they expected I would be cancelling it as I would be absolutely fine. I didn't cancel it, and I didn't get better. At the next appointment, I saw a lovely man who referred me straight to the ankle specialists. One MRI later, and my ruptured ligament was discovered. Off to surgery I went, for a procedure called the "Brostrom Repair". Time went by, and I worked hard at my physio, but a combination of mishaps led to my ankle refusing to bear any weight again. I was still under the care of the consultant, but he retired in December. I was transferred to the new consultant, and attended his clinic a few weeks ago - post about it here. 

His recommendation was a SPECT/CT scan, and the nearest hospital that offered it was the Royal Free. I expected a bloody long wait, but the appointment came through very quickly - I was very surprised! Pleasantly so really. The way it was described left me feeling a bit apprehensive. 

On Friday morning, Dad and I toodled off to Hampstead Heath. We got there very easily, which was good. I cannot lie, when I saw the Nuclear Medicine unit was in with the Oncology Department, I was fairly scared. We stopped at the shop (the hospital has a WHSmiths!) and got some sweets and drinks, which was good as it gave me an opportunity to calm my nerves a bit. Then we headed down to book in. It had that very sanitary smell, that seems to be particular to cancer units. Its quite a strange smell really. 

Anyway - we booked in, and sat in the waiting area. A lady next to me had a beautiful pair of leopard print slippers! I loved them, but she didn't know where they had come from, as they were a gift. Boo! We weren't really waiting long, and we were called in 30 minutes before my original appointment time. Winner! In we went. I was fairly surprised, as they allowed my Dad into the room. I was expecting that not to happen, especially when I was about to be injected with a radioactive solution! 

I was helped up onto the bed, which had a conventional looking CT Scanner - the polo shape - at the end. I was asked to lie down, and turn my feet into a fairly uncomfortable position. My knees instantly hyperextended, so I asked for something to go underneath them. The radiologist was great, and made sure I was comfortable. Then he taped my feet together! Not cool! My hips were unhappy, but it had to be done, so I gritted my teeth. 

Next came the injection. My veins didn't want to play on the left hand side of me, but my trusty one on my right elbow was ready to go. The syringe came out, encased in lead. That made me chuckle a bit. It was a pretty big one too! I'm not one of those people who shy away from a needle, or any medical procedures really - I love to have a good look at what's going on! So I watched it go in. It's left me with a fairly big scratch, but it went in fine. Then it was time for the first of three scans. It was over very quickly really, which I was very thankful for, as my poor hips were very subluxed and uncomfortable.

Next came a 4 hour wait. During which I had to drink lots. Ack. I am not a big drinker really, particularly under pressure. I reflux quite a lot, and it puts me off filling up with liquid. I slosh about! We took a stroll (well, Dad did - I took a roll!) around the town, and settled on a cafe just at the bottom of the hill. I can't recommend this place enough! It had a step to get inside, but loads of tables out front. The lady running it came straight out to us, and spoke to me. Sadly, when I'm in my wheelchair, a lot of people talk about me to whoever is with me. It drives me absolutely mental, but I understand some people just find it awkward. This lady spoke straight to me, which was really lovely. She was brilliant - took our orders, rearranged the furniture so my wheelchair had a clear route, and really looked after us. The food was bloody lovely too. 750ml of water had now been consumed. 

Next door was an M&S Food shop. I cannot go past one without getting some Percy Pigs. Nom. So we took a wander round there, and a woman who wasn't looking where she was going, walked straight back into me and almost sat on my lap. I did chuckle a bit, but it probably would have really hurt if she had landed on me! We got Percy Pigs, Reversy Percys, Walnut Whips and Mint Whips. Also, a litre bottle of water. I've never seen a litre sports cap bottle before - so if you would like one, M&S is the place to go. 

We killed some time sitting in the shade of a tree, then took a trundle up to the hospital again so I could use the loo. I then did a bad thing - but in my defence, I didn't know I wasn't supposed to - I used a normal disabled toilet. I should have used a specific radioactive waste one. Whoops. Then we went back to the WHSmiths, bought Ice Lollies, and went out to the seating area at the front of the hospital, to watch the world go by. By this point, I had gotten very very hot - something I had been warned might happen. We sat, and I consumed the litre bottle of water. Then Bill Nighy came out of the entrance! He looked very smart, a really well cut navy suit, and rocking the geek glasses. I thought about approaching him, but figured he had just come out of the hospital, and probably really wouldn't appreciate fuss. 

15 minutes before my return time, we headed back in to the Nuclear Medicine unit. At this point, I was segregated from unradioactive people, and had to sit in the Yellow Area. This did have a bonus - a whacking great TV which was showing the tennis. I then used the Radioactive Waste Toilet. It was monstrous! Absolutely massive. And the flush! Oh my god it actually roared. I jumped out of my skin! 

The radiologist came to get me, and off I rolled to the next scan room. Dad wasn't allowed to come in this time, so he sat and dozed in the waiting room. Like before, I was put onto a bed, and they gave me a knee support straightaway. I had to then put my feet against a foam wedge in the same position as before - and you guessed it, they taped me up again. I knew this was going to take a lot longer than before, so I tried to use some of the relaxation techniques I got from CBT. Usually, when I have MRI Scans, I rely on music to keep me calm, relaxed and still, but I didn't have that option. Eeep. There were two scans being done here, 1 immediately after the other. The first was for my entire body - checking my bone density. A flat panel camera was used, going down the length of my body. I don't really handle things close to my face at all (I think I mentioned that in a previous post... not sure!), so I closed my eyes and thought of nice things until it was done. I almost went to sleep! The radiologist came to tell me the first scan was done, and the next one was about to begin. This was just for my feet. Another Polo shaped device, but this one whirred so hard and loudly I thought it was going to take off! This bit didn't take anywhere near as long, which was good as my poor hips and ankles couldn't take much more!

The second part took around 55-60 minutes, but to be honest, for the first time ever, I found the CBT stuff useful. If I have to have any scans without music again, I will definitely be using it. 

6 days on, and my hips and ankles are still cross with me, which isn't good. However, it had to be done, and hopefully it will help my consultant work on a way to help stabilize the HulkFoot™. Whether it be fusion, modified Brostrom Repair, or something totally different, I hope that there is a way to fix my ankle to a standard that I can actually place weight on it without it giving way on me. The effects of it are spreading to my knee and hip, and it is not helping my back to heal at all. Which is really not good. 

The real plus of this, is that my Consultant is very interested in my condition, and it seems like he wants to explore it for his CV. Which I don't mind - I'd rather have that than be abandoned to live with an ankle which doesn't work. I want to walk normally again. I want to wear normal sized shoes. I want to not have to take my shoes off because I'm cutting the blood supply off due to swelling. I am hopeful that some of this is achievable. 

The scan process itself was relatively easy, but had painful moments - mostly due to being an EDS-er. I was hot until about 12 hours later, then cooled rapidly. Other than that, there were no side effects really. (Some toilet info, which is really TMI!). 

 I can't say I enjoyed my visit to this hospital (nobody ever enjoys it!), but it was clean, efficient, and organised. Which is always a plus.

I will report back with the results after my next visit with the Consultant. I find it all very interesting, and hopefully I will get to see the images! If any fingers could be crossed for me, that would be most appreciated :)

*If you read to the end of this, you are a star! Thank you for taking the time to read my essay - I never intended for it to be so long, but the words ran away with me!*

Review: Converse All Stars

This clearly isn't your usual topic for a review, but hopefully all will become clear!

*NB: Possibly Not. I am a wee bit strange. 

Since my ankle operation, my foot has absolutely refused to return to normal size, instead resembling an orange shoved under my skin. It is known as the HulkFoot™. It is also unable to bear my weight without giving way. I have been unable to fit any shoes on really, or socks. I have some amazing fluffy slippers which are keeping my feet warm at home - so awesome that I have two pairs. One with stars and moons on, and one with purple leopard print. I am a big fan of leopard print! 

Anyway, back on track. A month or so ago, my dad took me to TK Maxx, and we found a pair of DC trainers with Velcro fasteners. They are black with rainbow spots and I like them very much. We bought them in a size bigger than I usually wear, and they are lovely. However, my ankle goes over the sides of them a bit. And that isn't always ideal. It's not so much a problem if I'm on wheels, but when I'm on my frame it can get a bit unpleasant. 

On Saturday, I was shopping with my Mum and Edie, and we took a look around Office, mainly to have a nose at the sale section. I spotted a pair of Converse, which I loved, but the side zip meant they wouldn't go over the HulkFoot™. I tried another pair on, in a 6 and a half, which were comfy, went over the HulkFoot™, but would have been a trip hazard if I had been using them on my frame. Total fail. 

I had been lusting over these beauties for a loooong time, and they were the only ones in a size 6 on show, and of course, not on sale.  But I tried them on, and it was my Cinderella moment. And I figured I might as well spend the extra £18 and get the pair I really wanted, rather than settle for a pair I wasn't so keen on. They are the All Star Hi Top Anchor (jeez, that's a name and a half!).

They are amazing. As is Converse Custom, they came with a set of red laces as well, which I immediately put in mine - they look awesome, and don't seem to get as dirty so quickly! 

The fact that you can have the laces set lower down, means that as the day goes on, and HulkFoot™ grows ever larger, I can loosen them off but still have support there to stop it going over completely when I'm walking with my frame. Also, the fact that they are looser means I can slip them off, rather than having to try and bend down to take them off at the end of the day when my back is really sore. I am officially in love with a pair of shoes. If HulkFoot™ is to be a long term thing, more of these will be entering my life. There are so many beautiful pairs!

I'm really chuffed to have a pair of shoes that are comfortable, supportive (to an extent, they aren't rock solid so there is still some movement), and pretty. For me, that's awesome news. Bendy Friendly Footwear can sometimes be fairly unattractive, but these are far from that. 

Tell me about your pretty Converse!