My Dodgy Skin and Joints!

As well as having myalgic encephalomyelitis (ME/CFS), lately I have also been having a lot more joint problems than I have ever had before, so I thought I would write a bit about it. I have always had loose joints and been hyperflexible, but it has gotten a lot worse as I have gotten older (especially over the last year or so). I frequently spontaneously dislocate joints (even in my sleep), and my joints seem to like to swell up like balloons for no apparent reason as well (making it hard for me to move around). I take morphine to combat my daily pain - and that means that I can type, use a knife and fork, and move around (but I am not pain free, sadly - just a lot lot lot better than I was before I started taking it!) 

Anywayz, I have recently been diagnosed as having joint hypermobility Ehlers-Danlos Syndrome (EDS), and am having a bunch of tests to check for things like rheumatoid arthritis, fibromyalgia (which my rheumatologist thinks I probably have), various viruses, and other things that could be causing my worsening of symptoms (and my new symptoms - swelling and much worse pain!) 

As well as my joint problems, I am kinda concerned about the strange bruising that I get (especially since my dad saw them and got all concerned and made me kinda scared! lol). I have always bruised easily, and my bruises take ages to heal. Since I have recently been diagnosed with EDS, I have been reading that this is something that can be part of EDS. My bruises also seem to heal from the inside out - so I kind of get left with weird-looking rings of bruise for ages! It is very weird and pretty ugly!

These are on the back of my calf (yep, looks darn sexy in a dress... lol!)

Anyway, I recently got massively attacked by mozzies (they seem to love me! They didn't bite anyone else that was outside that day!), and the bites are all turning into weird bruises now. I look kind of like I have some odd spotty skin disease! 

I'd love to hear comments on this topic - especially from other people with EDS! Am I just weird, or is this kinda normal for people with this? lol! 


~Adrielle =)

Baby Severums!

Our two severums, Chomp (a male green severum) and Shorty (a female blue severum) have little babies at the moment =). This is their second attempt at starting a family, and this time everything seems to be going along swimmingly! We had to separate Chomp and Shorty because Chomp was being a bit too aggressive towards poor Shorty and she was becoming stressed. Thus, Chomp is now looking after the ten little babies, and Shorty is enjoying a nice relax in a different section of the same tank (where she is much happier!)


Here are some pics of the babies (they are a bit blurry because the babies are so small and never stay still!):

When we adopted Chomp, he was injured - he had a chomp missing out of his back, where another fish had attacked him. When we adopted Shorty, she was missing her tail as a result of another fish biting her. So our two fish had a hard life, and we are happy that they have found love and had cute little babies now lol =)


We are crossing our fingers that their little babies make it to be healthy full sized fish!


~Adrielle =)

I Love My Garden!

Well, I love my garden at this time of year (or any time of year!). When I am feeling up to it, I like to walk around and take pictures of it! At the moment, it is spring time, and we have just had a heap of heavy rain. Here are some pictures from the last two days =)

~Adrielle =)

Health Update!

Hi hi!


Well, I know I haven't been around much online lately (apart from on Twitter!). I am having a lot of health problems and am finding it very hard to use my PC! I really miss everyone whom I usually talk to on Puzzle Pirates, and on other websites and forums =(. I also really miss being able to blog, update my websites, go on all of my favourite forums and make digital art! I thought I should write this post, just to let everyone know that I am alive, and what is going on with me =).


Well, the last few months have been kinda hard for me health-wise. After having myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) for the past six years, I suddenly found myself experiencing a bunch of new and scary symptoms.


As a bit of background info, I have lived every day for the last six years with:

•  Extreme physical and mental fatigue (to the point where everyday tasks like remembering things, showering or brushing my hair is difficult). I take several naps during the day, and get a full night's sleep, but no amount of sleep fully refreshes or cures my fatigue. I use a wheelchair to go shopping, or to go out anywhere that involves more than a tiny amount of walking
• Post exertional malaise (massive worsening of symptoms following any physical or mental exertion or stress; it can take me several days to recover from a few hours out shopping in my wheelchair or from cleaning my room, or it can take several weeks for me to recover from the drive to the city, for example)
• Frequent severe headaches, migratory myalgia and arthralgia (horrible joint and muscle pain that moves from place to place, but has no obvious injury or swelling associated with it)
• Problems with short-term memory and concentration, and many other cognitive difficulties (these become a lot lot lot worse when I am especially fatigued!) 
• Blurred vision and difficulties with depth perception (hard to pick up drinks off tables, etc.)
• Numbness and tingling in various body parts for no apparent reason
• Losing balance (and crashing into door frames and walls!) 
• Sensitivity to light (to the point of having to wear sunglasses indoors some days - especially in supermarkets or other shops that use those bright flurescent lights!) 
• Sensory overload - feeling of immense anxiety if having to listen to/focus on more than one thing at a time (especially if my dad plays his guitar loud while people are talking and the tv is also on loud - I can't cope with it and it's terrible!)
• Occasional palpitations of the heart
• Nausea
• Dizziness, shaking, feeling faint, occasionally passing out (most often while showering!)
• Low-grade fevers, difficulties adjusting to temperature change, night sweats, day sweats 
• Decreased appetite
• Tummy troubles 
• Sore glands, sore throat and general flu-like symptoms
• Associated depression

Throughout my entire life, I have also had hypermobile joints, dislocating bones from time to time (especially my knees).


A few months ago, however, my ME/CFS symptoms all got a  lot worse, and new symptoms appeared. Instead if dislocating a bone once every month or two, it started to become a daily occurance (and started to affect almost all my joints! Elbows, knees, toes, fingers, thumbs, shoulders etc.). I was clinically assessed and diagnosed as having hypermobility syndrome, or Ehlers-Danlos Syndrome.


All of my joints started swelling up, and I was in terrible pain all the time - a lot worse than my usual ME/CFS pain. I was unable to walk without limping terribly, and I suddenly found myself unable to use my hands to do pretty much anything (typing, holding a knife and fork to feed myself, etc.).  Around the same time, my heart palpitations became much more frequent, and much more severe. On top of this, if I try to do anything that involves even a tiny amount of physical exertion, I shake like crazy and sweat uncontrollably! It's awful!


Anyway, at first I put it all down to just ME/CFS being evil. I thought I was just going through an extra bad patch... but things just kept getting worse. Blood tests showed that I had rather severe inflammation or infection somewhere in my body. But where? In an adventure in trial and error, I ended up being put on prednisone - a corticosteroid - to see if it would help the bizarre swelling and pain in my joints.


Miraculously, it did work! And it worked really fast too; within a couple of days! I felt so much better than I had felt before. I mean, I was still not able to do very much at all, but I could definitely feel a difference. After that, I was put on morphine - which is an amazingly awesome pain killer. I am not completely pain-free, but this wonder-drug allowed me to type and use my hands, and to eat again! It was awesome.


Although my pain was now being treated, the cause of my symptoms was still a mystery (so were my heart problems!) I was refered to a cardiologist and a rheumatologist to see whether either of them could find anything that could be causing my sudden worsening of symptoms, or my new symptoms.


The closest rheumatologist was 400kms away in the city (that is more than four hours by car). I went to see her last week. She agreed with my GPs diagnosis of hypermobility/Ehlers-Danlos Syndrome, and thought that I could possibly also have fibromyalgia. She is doing a heap of tests, including blood tests and bone scans (luckily I can have all of these tests locally!) Depending on what the results of these tests show, I might need to go back to the city and see her again in January. I mean - in a way I don't want the tests to show anything... but on the other hand - it would be pretty awesome if they found something that was easy and quick to fix, and I could feel better! 


Anyway, a few days later, I went to see the cardiologist, locally. He was awesome, and had experience treating other people with ME/CFS and EDS! He did some diagnostics and determined that my resting heart rate is way too high. I had an ECG, and have to have an echocardiogram and a holter test next week, and another test in melbourne in two weeks time (yes... another trip to the city... before I have fully recovered from the last one! :S)


Lastly, at the moment, I have a sinus infection on top of everything else, which is really not helping at all lol! 


Anyway, that is my health update! 


~Adrielle =)

Belated Halloween Post!

Well, I know it has been a while since Halloween, but I haven't been going so well health-wise, and haven't had a chance to write this post until now! For Halloween this year, me and my family decided to have a Halloween feast (well, I decided it would be fun, and pretty much talked them into it!) We made heaps and heaps of Halloween-themed food, put up decorations, and dressed up in Halloween costumes! It was pretty fun! 
    During the week leading  up to our Halloween feast, we made the food, and the table centrepiece. I tried to spread out the tasks so that I would be able to pace myself, and would still have the energy to enjoy the feast! As it turns out, I was (as usual) a little bit too optimistic about my energy levels... lol! I ended up pretty dead by the end of it all, but it was awesome fun, and SO worth the long recovery! 
      I dressed up as a witch, Ellenya dressed as the devil, and Kecapmanis dressed as a shrew! 

The Table Centrepiece!
I made a table centrepiece, which was a lolly bowl! It was a papier mache pumpkin basket with a handle that I bought. I painted it with glitter and paint, stuck little shiny diamontes, spiders, curly pumpkin vine bits, and spider webs onto it, and then filled it with all kinds of nice treats! 

Pumpkin Carving!

As we needed decorations for our feast, and the very lovely Apollo from Puzzle Pirates was holding a pumpkin carving contest, we decided that we just have to give pumpkin carving a go! None of us had ever carved a pumpkin before, and it turns out that carving pumpkins are rather expensive in Australia (as they are imported from the US, sold by the kilogram, and weigh like a tonne!) My first ever experience of pumpkin carving was pretty fun, but getting all the seeds and hairy gutty stuff out of the middle was seriously disgusting! lol - I went for a fairly simple design - a jack o lantern with an eye patch! 
    We made them a few days before Halloween, and took them outside into our new outdoor area to light them and see what they would look like in the dark! I used a citronella candle in mine, so it also worked as a bug deterrent!  

The Food! 
The most important part of the Halloween feast was, of course, the food! We researched spooky food ideas and came up with an awesome menu! 

Ellenya's Ectoplasm Ice Cubes (which were shaped like ghosts, and had blue food dye in them! Yes - they make ghost shaped ice cube trays... we got it from Aldi!) 

Gingerbread Biscuits! (Baked by Ellenya, iced by me and Elle) I was kinda proud because I made real icing (not just icing sugar and water, but beaten and with butter and vanilla etc.) all by myself! Now that I have my kitchen chair with arms on wheels, I can do things in the kitchen without getting too fatigued! It is awesome!

Cupcakes! I decorated the spider ones! hehe =D 

We also had severed fingers (which are made from meringue with a jelly bean finger nail and jam blood), gravestone brownies (with handmade icing pumpkins and gravestones made by me!), Adrielle's candied heart truffles, and Kecap's lovely green mouldy pasta alfredo! =D 

So all in all,  we had an awesome night! Hehe =) I can't wait until next year!!! 


~Adrielle =)