Support Dog

http://www.dailymail.co.uk/health/article-2097649/Byron-dog-makes-bed-fetches-milk-gets-money-cash-machine-disabled-owner.html

well worth a look :)

Help!!!!

I am applying for higher rate mobility I already receive the care component. I was looking through my medical letters for a doctor’s address and noticed that a lot of the medical reports contradict each other. One says I have begin hypermobilty another says I have severe EDS type 3. Another said I scored 3/9 on the beighton score and another says I scored 8/9.

One letter says I have POTS another says I get slightly flustered. One even says I have drug seeking behaviour (like it hasn’t been mentioned before lol) 

One letter says I have never dislocated (I wish) and another says I dislocate daily. One says I’m left handed while I’m actually right handed.

I was wondering is there a way that I can get a letter that is correct. No wonder I’m struggling to get any help let alone get my head round what’s going on. I would ask my specialist but I am not due to see him till god knows when. I phoned for appointment waiting time and was told I’m looking at 11 months for an emergency appointment. Do you think it would be a good idea to email him? I just need a definite letter to be able to claim right. With the letters at the moment the government are refusing to issue a bus pass because there’s so many contradictions, any ideas what I can do?

EDS in the media

Does anyone watch Casualty? This week’s episode had a patient with EDS type 3!!!!

I’m afraid to say I was horrified by the portrayal that was used. The patient was a junkie who “purposely” dislocates his shoulder to receive morphine. It makes us look great doesn’t it? One doctor classed him as a frequent flyer and said that he had drug seeking behaviour. How many of us haven’t heard that line before!

So after the new clinical lead relocates his shoulder, with no pain relief, and no warning, she says “well he won’t try that again”

I have to say it’s quite an accurate portrayal of a doctor dealing with an EDS patient. It’s sickening.


I was hoping to make a short clip but it doesnt seem that its going to be ready any time soon. If i manage it i will upload it.
The patient I am on about is roughly 10 minutes in.

  (video from you tube. I do not own this)

In other news I have to go back to the dreaded dentist. I’ve lost two fillings in the last day L wish me and them luck.

One of my biggest cosmetic problems is dealing with the endless bruising that is part and package of EDS. It’s an absolute nightmare. I woke up this morning with a bruise on my inner leg the size of an orange. How it got there, well your guess is as good as mine. It wouldn’t be such a problem but I have only just started to get rid of the bruising from falling down the stairs awhile ago. Which is the reason for my absence. My little trip has given a lot more time to work on crafty bits. I have major problems with my cross stitch at the moment as nothing seems to be right. I think I have used the wrong grey for one of the wolves, the sky don’t seem in the right position. The only thing that seems vaguely right is the tree which I have only got half way through. I’m considering starting all over again providing that I can unstitch it without damaging the Aida. I really want to get it finished before my next project arrives. A Xmas stocking for my son cross stitched with polar bears and presents. I think it will be a mad dash to get it finished ready for Santa to fill up.


I have had an eye test and pick up new glasses on Wednesday which will make things easier. The doctor said about putting me on beta blockers to try to stop my migraines, I’ll admit I’m a bit worried about taking them. Let’s just hope they will help.



Nap time project



warning:bad spelling

Wow thats a good start. I use microsoft word to write my blog then copy and paste after spell checker has done its magic. Its crashed. So i am truely sorry for any typos/spelling/grammer problems.


Ok so update time. I have done no arty bits no cross stitch no crocheting. I am how ever thinking abouta new project im hoping to start in january. Quilting. I have never tried this and have been reading up on it. I souds very complicated and i think will take me the best part of a year to complete. I have different ideas on the style of it but havent completley made up my mind yet.

My health isnt great. Even more so now the colder weather has started to kick in. all i want to do is sleep and watch the world go by. I love winter none the less. There is something about the way the streets are empty at night. Watching snow fall, my street flood, and then theres xmas!!! I cant wait for xmas to get here. The look on connors face as he opens his presents is gonna make the highlight of the year for me.

I am pleased to report that my mind is less frazzled then it was on my last post. Connor has managed to total his glasses again. This time by headbutting the wall as he fell over. Another trip up town for me asap. He is enjoyng nursery and has grown in so many ways since started bearing in mind this is his secound week. His speech is amazing his using animal nioses, his even sleeping better.

I will be adding a poll to here as soon as i can work out how to do it. Keep a eye out as it could improve things around here for you lot instead of my ramblings i will be adding new topics to the top bar thingy. I was thinking along the lines of informatin into EDS, tips and tricks, backstory, helpful pages and groups for informatin or help. Let me know what you think. As alot of the time i dont know what to write about.



Sorry again about my spelling. :)

Freedom

Isn’t all it’s cracked up to be. Connors hopefully enjoying his first half day at nursery. I’ve put it off for months even though I needed help. Now I’m sat at home alone listening to the washing machine on a spin cycle. I am bored senseless. His been there almost 3 hours now and I already have my shoes on ready to limp out the door and go get him. Don’t get me wrong I am more than happy to have some time to myself I even managed to do some of the housework. But now the house is just too quite. I am sure that once I get used to being able to pee without a 2yr old trying to pull up my trousers ill settle down a bit and maybe even attempt to make some friends or be really daring and have a cheeky little nap.


The thing people don’t understand when I say about my friends or the lack of is that keeping friends when you have a child is hard enough. Your no longer fun you, pretty much always smell of sick, and instead of a night on the town all you want is to sleep for more than 3 hours without having to do an arse change. Needless to say most my friends disappeared as soon as my bump arrived. Having a child and having EDS makes friends almost as rare as an honest politician. On top of the fore-mentioned there is also the different “elements” of the condition. I’m not just talking about the unsightly supports, the crutches or embarrassing “problems” in public but also the mental and emotional aspects of EDS. If they can get over the physical problems the mental ones are normally the thing that makes them skip my name in the phone book. Depression, anxiety, fatigue, pain. Most people don’t understand how isolated being disabled or being a parent can make you feel. Especially if they don’t have any experience of it. I’m not bitter or angry or even that upset about it now. I have always liked my own company. I just wish that instead or someone thinking”oh no I won’t invite her, she can’t do it” I would rather they let me decide after all it’s my disability, my choice. And just because I have said no once don’t think that I’m always going to say no, maybe the last time you was kind enough to ask I was laid up in bed where as this time I’m ready to shake my booty till something pops!!

Making the effort makes all the difference

Yesterday was a good day. I got a lay in thanks to my lovely partner. Managed to get most the housework done, while my partner got the car cleaned ready for our road trip today. My mum is also disabled due to EDS tonight she will be going to her first concert in over 20 years. Why? Because someone outside the family actually asked her to go. People stopped making an effort not long after mum had to start using walking sticks almost 12 years ago. This lady who is taking my mum is a single parent struggling to raise a teenage boy alone, is struggling to put herself through college, yet she took the time out to think about my mum. She has phoned ahead and got disabled access. It’s amazing how thoughtful someone can be. One little act of kindness as made my mum’s month. The depression she was going through has lifted, even if its temporary it’s nice to see my “old” mum back just how she used to be. I and my partner will be taking them to London later today. Can’t wait to see her face when they come out.


I’m making good progress on my new project the stripy scarf for my sister. It’s looking goooood hehe .

:'( bad week :'(

It’s been a long terrible week. So many times I have ended up in tears wondering what’s the point of it all. I have been in amazing pain due to my EDS, and to top it off I’m still having problems with my teeth. Trapped nerves again this time in another tooth. The filling started to “bubble” and has started to fall out. That’s when the pain was at its worse. I also ended up with an abscess just above the tooth in question. I phoned my dentist surgery who done the work. Begged them for an appointment, explained the pain I was in was unbearable even with taking countless painkillers on a daily basis anyway. Eventually they agreed to give me an emergency appointment in mid December. That’s over a month and a half away thanks allot Gibraltar house. Starting to think it might be a better idea to have all my teeth removed and have false ones then I know I’m not going to get any more problems with them. But knowing my luck I would forget where I put them.


I have lost most faith in family and friends this week too. I don’t know if it’s because I was already depressed or it’s what’s causing the depression. I feel like I’m fighting all the time. Fighting to keep strong, keep the house reasonably tidy, to get people to understand that yes; yesterday I could walk to the shop but this moment in time I can’t get off the sofa, fighting to make my partner understand. We have fallen out many times this week over things that normally wouldn’t be worth sighing about. I am fed up of the countless number of times I have gone out my way to help my family giving up most of my childhood to look after my mum who became disabled due to EDS while I was still in school. Yet whenever I ask them for help I am made to feel guilty, like I’m taking advantage or I’m a bad mother. I am fed up of it all and I am fed up of being fed up.

That’s why tonight I have decided to crawl, yes literally, out of my pit of despair and have started yet another crochet project. This time it’s for my sister as a Xmas present. She is really into all the emo/ Goth stuff that’s going on at the moment. So I decided to crochet her a stripy “moody” scarf. I’m making good progress considering I only started 2 hours ago. So far I’m on my 6 row of colour. I hope she likes it, my dad was worried she might think it was old grannyish. If I can get it finished in time then I will make her some fingerless gloves or arm warmers as she’s mental over those too at the moment. Ill upload some pics when I can find the memory card for my camera. I know I had it last week as I uploaded pics here. Hmmmmm maybe its behind the fridge......

I’m excited and somewhat apprehensive about next week. Guess what were doing.....potty training. I gave it a trail today and Connor managed to pee in the potty twice. Admittedly he peed over other places but came and told me which is a good sign. I think it will go ok. His got the sensation most the time so I guess just see how things go. If anyone has any tips please feel free to leave a comment.

Wow it’s been a busy 9 days. Been doing lots of cross stitch. Done half a tree and some of the sky the wolf has his back ridge....kind of. I’ve been trying enterlac again I think I’m getting the hang of it. Still not how I think it should be but it’s looking more even. My son has been trying too eventually he got bored and started using them as drumsticks.

 

Cross stitch so far





Connor crocheting....kinda



Had appointment with a specialist in London. Travel was a nightmare, my son was a nightmare, and the appointment was a nightmare. Not particularly happy so I’m making an appointment with my rheumy tomorrow morning. I was happy with the person I saw today asking for blood tests and x-rays which had all been completed with-in 2 hours. Normally I would have to make another appointment to have them done so was amazing to get them done in one go. We had MacDonald’s for lunch which we had to eat sat on the pavement as there was no seating; I ended up with a hell of a numb bum. I have a lovely bruise from the blood tests, 2nd time lucky she managed to get blood from me. First time in years anyone has managed it that easy.

Blood test bruise

Dentist update

Its been a few days since i had the dreaded dentist. Im slowly starting to remember things that i had forgot,silly little things really. The car ride up there managing to smoke nearly 6 cigerates in half hour, i feel sorry for the dentist as i didnt have any mints with me,which will explain why my lungs feel like i have been in a fire. The look on the sedative persons face when she asked about my medical history, hehe classic “what???” then having to explain in lamemans terms what EDS is and how it effects me. My dad rolling his eyes when she asked me how to spell it. The dentist warning me that if i am violent or abusive again he wont treat me. Honestly it was only once or twice.

I could finally feel my nose nearly 2 days later. I can smile normally, or what i count as normally its been a long time since i had the confidence to smile. Thanks to a addiction to energy drinks most of my front teeth had started to rot. So i stopped smiling. It feels weird to start again. A nice weird though. My teeth are super sensitive, i must be the only person to carry a straw around with me so i can drink without pain. Its slowly getting better, i had ice cream today which killed but was so worth it.

My partner goes back to work tommro. His been at home for a week as he had to use holiday up. Its the longest we have ever spent together,gonna miss him when he leaves tommrow. But will be nice to have time to dance around in my undies without him thinking im mad.

You might have EDS if....

You might have EDS if...
You have ever been kicked out of a doctor's practice for being too high maintenance.

You don't drink, but you still have more "mystery bruises" than a perpetually drunk frat boy.

Your medical records contain any of the following terms: "hypocondriac" "drug-seeking behavior" "munchausen by proxy" or "psychosomatic"

Any of your funniest stories start with "when my doctor first gave me (insert medication here)..."

Your doctor has ever uttered the phrase "THAT'S a new one!"

You are convinced your doctor should be paying YOU for teaching him about EDS.

You envy college students for the amount of sleep they get.

You never understood why everyone kept complaining about that 'one spot' on their back they could never scratch.

Your number of (wrong) diagnoses outnumbers your age

Medical students flock in the room to OHH and AHH

Your doctor asks you to perform "tricks"

Your prized possesions are your wrist braces.

You have to remind yourself not to hyperextend your knees when you stand for any length of time.

The only gym test you ever excelled at was sit and reach.

Freezing cold hands and feet in the summer, not to mention seasons when it is actually cold.

"I can only deal with one issue per appointment".

You hate the days you've got to get up before 11 am.

"We can't link your pain with the fatigue" - two years later - "Yes, fatigue is very common with EDS"

You take joy in doing your "tricks" to scare people.

You sit in gym and wonder how in the world people can be running and not limping or crying.

The more time you spend around normal people, the more things you find "wrong" with you.

You've never had anyone complain that you're not flexible enough in bed!

You've seen more doctors than you can count on your hands or feet.
Your partner/spouse lays down in bed first, arms open. You rearrange around them. Then they ask, "Where can I touch you?"

Your rice crispies aren't the only thing that "snap, crackle, and pop" in the morning.

Your list of symptoms is longer than the monthly grocery shopping list..

You've heard your mom say too many times to you, "Don't sit that way, Just looking at you makes MY joints hurt." and she gets a blank stare in return.

if you keep you symptom list and medical history on your laptop, so you can print it out for the doctor of the week, since you can't remember what happened when.

If you have tried to wash off a bruise, 'cause you didn't process what it was, and then stood in the shower staring at it stupidly.

When you have a hard time losing weight because all 20 medications you are on, say to take with food.

I i realized it wasn't normal not to be able to put sun block on your back yourself?!??!?

When the doc says 'EDS, you can’t have that, that’s only seen in text books.'

When zebras bring on a whole new meaning...

When you write down all your meds on the forms in the doctors office and realize there is not enough room to fit them all...then that same doctor says "You are so young to be on so many different medicines."

When the first thing every doctor asks you is "do you have a good pain management doctor?"

And then the last thing they say to you is "you need a good pain management doctor."

You carry a printout from Wikipedia so you don't have to explain EDS yourself.

You've had more sprains than anyone you know.

You fine a new bruise everyday.

When you do a "cool trick" your classmates are either disgusted or think its cool.

You're older than you look, but younger than you feel.

You've ever had to research medical journals or websites to find out what the "normal" range of motion is supposed to be in a particular joint.

You've ever looked at a picture of someone with a broken or dislocated joint and had to ask what the problem is because it just looks "normal" to you.

You come out of the Dr.'s office feeling as if YOU'VE done something wrong.

Your doctor gives you a stare and then raises their eyebrows in surprise when you tell them about your disease!

When you barely hit a part of your body on an object and you have a bruise for 2 weeks.

"You can't have all this pain at your age. Do you want to be labeled with chronic pain at your age?”

Your body parts go out more than you do.

What about you see a picture of what someone with EDS can do and then go try it, only to discover you can!

When you KNOW you can't do something considered normal, but can do all kinds of things considered abnormal!

When you wake up at 6, still tired, aching all over and go ahead and get out of bed just because it hurts to lay there.

When you get up at 6 and don't get dressed until noon.

When all you appointment books have late afternoon appointments because mornings "just ain't happening."

When you read these statements, totally relate to them, and laugh when you feel like crying because they are all true....

You dislocate one ankle sitting on it and promptly dislocate the other couple hours later same way.

If you've ever heard, "Uh huh, well, *I've* never heard of that," in a disbelieving and condescending tone from a nurse; you might have just told them that you have Ehlers-Danlos. "Yeah, riiight, how do you spell it?"

Your pill box resembles a pharmacy.

People say they know what it feels like to be irregular occasionally but they don't know what its like to be regularly irregular

You have pills in your bag, next to your desk, on your bed side table, at your mothers house, and others sprinkled around for emergencies. (You never want to walk that far.)

Simultaneously amazing and sickening a yoga instructor at your first yoga class. She doesn't believe you when you say that you haven't taken yoga before.

You are confused when someone asks, "Don't you hate when you get that itch you just can't scratch?"

They mention Ehlers-Danlos Syndrome on "House" or "Bones" and you scream "YESSS! WAY TO REPRESENT!" and high-five your roommate.

The retirement home folks on the city bus find out about your physical maladies and inevitably tell you "Sweetie, I know just how you feel" and you're at least 60 years younger than them.


~taken from Facebook group Ehlers Danlos Syndrome