My Favorite Things

It was requested that I write about my favorite things so here they are :) :

1. Books- I love books and reading so this one is a hard one to keep short! My favorite books are Ruby by V.C Andrews and Handle With Care by Jodi Picoult. People who are interested in Connective Tissue Disorders would like this one.
2. Authors- V.C Andrews, Jodi Picoult and Barbara Delinsky
3. Movies- My all time favorite movie is Ice Castles it is a movie I can watch over and over and still cry everytime.
4. TV Shows- Greys Anatomy is the best show ever. At the moment I am re watching it. I am watching Season 6 at the moment and loving it just as much as the first time I saw it!
5. Games- Monopoly! I love that game. I have it on my Wii so I can play with myself.
6. Foods- Chocolate (who doesn't love chocolate) and cheese
7. Hobbies- Scrapbooking, Reading and Swimming
8. Animals- Zebras of course!! But if I couldn't choose zebras I would have to say Meerkats
9. Pets- My cat Sox or my dog Buddy!

10. Drinks- Mocha
11.Colors- Blue
12. Songs- "Have your Way" by Britt Nicole or "This is the Stuff" by Francesca Battistelli
13. Flowers- Frangipanis
14. Piece of Jewelry- Zebra Print Dangly Earings
15. Perfume- Sex and The City- Kiss
16. Ice-cream- English Toffee
17. Stores- Valleygirl
18. School Subjects- Maths (Yep I know I am weird)
19. Fast Food Restaurants- Hungry Jacks
20. Restaurants- Neros

So, I hope you have learnt a bit about me!

Hugs,
Rachael

New blog

I have a new blog: rachaelshealthjourney.blogspot.com

Seizures?!

Today I had an appointment with the amazing GP who knows so much about EDS. The drop attacks have returned and she thinks I may be having absence seizures. I am scared and I don't know what to do... I will get through it. I have a neurology appointment soon so we will find out then

All Over

Hi Guys,

All my hip injections are over and I am now up and walking around. I got up for a while today and had a shower- I really missed showers! And I didn't have a drop attack.. so I am thinking that this ordeal is all over . I can not say for sure yet but I am very hopeful. I a thinking that this was all worth it!
How's everyone else been?

Hip Injections

Hi all,

I am sorry I have not updated in a while. Monday I had my hip injection into my Right hip. It was not too painful on Monday but the next couple of days the pain got a lot worse. Today I dislocated the injected hip. I am still in pain but they were not actually as bad as I expected it to be. I have the next injection tommorow. Hopefully it will not be too bad and I can get back to 'living' after this weekend.

We have answers!!!!

Hi All,

I am going to call my doctor Dr. M for the sake of this blog.
Monday my book by Dr. Brad Tinkle arrived! Joint Hyper-mobility Handbook.. It is all about the management of JHS (Joint Hyper mobility Syndrome) and EDS and conditions that can come along with them and how to tell if you may have him. So I sat in bed and read the whole book by Wednesday (yesterday) as I had an appointment with Dr. M. We booked a private appointment and the last appointment of his day so that I could have time to ask  questions and he could access all of my concerns. I wrote a journal for the past 2 weeks so that he could see what is happening. And then I wrote down all of my concerns. It made it SO much easier as I didn't forget everything and he could address EVERYTHING! He said to continue to keep a journal for him.
What we covered:

1.  Drop Attacks: He said that the body is in so much pain that it sends a message to my leg muscles to cut off and make me drop as it weirdly things it will stop the pain. I am so happy to have an answer and happy for the treatment as well! I need an injection into each hip- sort of like cortisone but it is a different drug. Then I need to lie flat on my back for 48hrs (2 days). One is done on Monday the 12th November and the other is done Monday 15th November. Hopefully this will stop the drop attacks completely.
2. Insomnia: I  have only been getting a couple of hours sleep each night which is not good at all. He things maybe it is my hip but it could also be a sleep condition so I have to stay over night at the hospital for a sleep study.
3. Carpal Tunnel Syndrome: I was also diagnosed with Carpal Tunnel so at the moment we are watching and waiting trying to see what will happen. At the moment no surgery is planned Whoot!!
4. Slipping Rib Syndrome: I also have been diagnosed with Slipping Rib Syndrome so we are going to wait and see I may need a medical corset but other than that there is not much that they can do.
5. Gastroperesis: I have a very mild form of Gastroperesis so I am going on medication for that to see what happens hopefully that will be all!

Other:

1. He wants me to see a counseller who treats a lot of people will EDS to help me get through the emotional side. There have been a few suicides in the EDS community so he does not want me to ever feel like that so he is treating me before it happens. I am really looking forward to having someone to talk to who understands EDS
2. Neck Collar: He told me to get a neck collar for the days that my neck is really unstable or when I go on long car trips so that nothing subluxs or worse dislocates so this is a precaution. 
3. He wants me to get some silver ring splints for my thumbs as I am having trouble with reading i.e holding a book for long periods of time. I am not sure if we will be able to afford them though so maybe I will have to give in and read on my pendo? (like an IPAD)

So this was a fabulous appointment and all my questions were answered :)

Next step

I am going to keep this short as I have a hairline fracture in my left arm. In other news I got the MRI results today. They are good and bad. Nothing is there that they can see. So thats good BUT it doesn't tell us what is wrong. I need to go for more testing. Oh well. Keep on swimming  ;-)

Just an update

Hi all
Nothing much has been happening. I still don't have my MRI results but i should within a week. I had another drop attack, nothing suprising but this time i hurt my ankle more than normal. So I am resting in bed at the.moment watching Beauty and the Geek re-runs. Hope you are all well.
And my new matress is here!! I have never had a better sleep than I have on this mattress I could not be happier!
EDSgirl

MRI

Hi guys,
So I have had my mri overall it went ok. The cd wouldn't play and it was very noisy and the vibration popped some joints out but home and in bed now so it will be fine. I am going to have to wait two weeks for the results though so I do not yet know what the next step in the treatment plan is...

Top Tips

First I want to make clear these are not all mine... many people on EDS forums have written these and allowed me to use them. Thanks guys :-)

1. Bowen Therapy- this is one I use and can swear by it though you need a good Bowen therapist
2. Medications- One thing I have to add here is if you need them TAKE them don't not take them because of what other people may say and think.
3. The ocean
4. Pain Sprays
5. Arnica Cream- LOVE LOVE LOVE IT!!!!
6. Dental Splint for TMJ and migranes
7. Family- This is my life line
8. Music
9. Pilates- Be careful with the way you move your joints in this though
10. Gastrolyte- an oral re hydration solution you buy at pharmacies.
11. Memory Foam Mattress Pillow
12. Sorbolene Moisturiser
13 Kindle- many with EDS cannot hold books open for long
14 Naps- I take many naps a day it is something that gets me through
15 Paw Paw cream- for cracked lips
16. Paper Tape
17. Gauze
18. Bandages- to wrap round dislocated joints
19. Wheelchair- without it I just could not do half of the things I do
20. Hand Splints
21. A brilliant doctor
22. Keeping fit with gentle exercise when possible
23. Speech Therapy
24. Dragon Naturally Speaking- to reduce keyboard and mouse use
25. Customized Ergonomic Desk
26. Beanbag
27. Bookseat or pillows to support books when reading
28. Alternating activities- not doing any one activity for too long
29. Only shopping for short periods of time
30. Hot baths to warm up in winter
31. Heat wheat packs
32. Electric Foot Warmer
33. Keeping Hydrated
34. Wrist BP monitor
35. Patience
36. Good Physios
37.Thumb Splints
38. Pacing yourself
39.  Being Organized
40. DVDS
41. Laptop
42. When travelling don't forget that all your medical equiptment can be separated from you.
43. Always travel with a letter confirming your EDS
44. Companion Card
45. Fold up camp chairs instead of plastic chairs

Hope this helps some people

MRI is scheduled

We got a call today that I am now classified as an 'emergent' case. So my MRI has been pushed forward to next Tuesday. It will take an hour and a half so I am to bring music. I am hoping that I will get the results soon. I am still falling and I am finding it harder and harder to get up each time. My body is battered and bruised and I am worried about how much longer my body can take it... at least I have the MRI soon xx

Not Happy Jan

Hi All,

I am having a bad day the drop attacks are still happening multiple times a day. I have been putting on a brave front and acting like its not worrying me and it doesn't matter.. but inside I am scared, more scared than I have been about anything for a LONG time. I am more sore because every time I fall I hurt myself. I have more naps and try hard to keep going. Today my brave front went down. I cried for the first time in a long time. I let my emotions free, a hard thing for me to do.

I worry what the future holds for me... I don't know whether I will get any better but I intend to.
I am focusing more on my physio and I AM GOING TO GET THROUGH THIS!!
Please keep me in your thoughts and prayers

Tests and Gastro

Hi All,

I went to the hospital to see what they think of my falling. At the moment they are at a loss. They are calling them drop attacks but don't know what is causing it or how to fix it. I have had spinal xrays, blood tests, urine samples and need an MRI and a cardio check. So I won't know much for a while. I have fallen 3 times today. I am worried but hoping that they will find an answer soon enough. I haven't updated as I got gastro and was not well

EDSgirl

Update

Hi All,

My toe is doing better! I have an important appointment on Tuesday to see what they can do about my falling. Will update that night... wish me luck
EDSgirl

The Joys of EDS

OK One thing that EDS does is that you don't react to medication the same way that normal people do. Today I had the procedure on my toe and the local didn't take so I felt it all- and my blood didn't clot so it kept bleeding. I am in pain but am OK.
xoxo

Fainting

Hi All,

I am over the tonsilitis now thank goodness. I fainted on Monday on hard concrete. I popped out my knee, hip, ankle, elbow and shoulder I am not sure about the ribs but they are really sore. There is a lot of bruising. I have been to the doctors and there are no broken bones so now I just have to recover. Next Tuesday I am getting a minor operation done on my toe. I have an ingrown toenail so they are going to do something called a Zadek procedure where they will cut out a part of the toenail and then they will burn away the cells so that it can't grow back. Wish me luck, things like this don't seem to go smoothly with EDS.

Love
EDSgirl

Mattress

Hi All,

I have gotten funding for a new mattress! I found a mattress that was just so comfortable. I am very happy with it.
I have got tonsilitis at the moment- I get it rather often. I am not feeling the best but getting through day by day.

EDSgirl

Travelling

Hi All,

Friday night I went on a camp with a group of friends from church. We all had a great time. I thought I should post about what it is like travelling with EDS, even though I always have a great time travelling for me is not easy.
1. I have no muscle mass so when I am sitting I am sitting on bone. So a car ride, especially a bumpy ride is super painful. Often I dislocate when in the car and I wait until we stop until getting it all sorted out.
2. Once in an unfamiliar place, I have more of a worry of falling. I have to consciously think about what I am doing as I may trip and fall which leads to more dislocations, which lead to more pain!!
3. Sleeping on an unusual bed is very hard for me and I wake up more during the night. This bed wasn't bad but I still woke up a lot.
4. Being active leads to more pain and makes the chronic fatigue worse than usual. I went to bed earlier than anyone else, and I also had some naps to help with that.
5. I have to make a packing list before I go so that I don't forget any medical things as if I do I wouldn't have a very good time!
6. I also need to pack a lot more than anyone else because of the medical stuff.
7. I need to drink more because of my POTS as one thing I don't want to do is faint!
Before I go on I want to thank all those that helped me on the camp- they know who they are.
Friday night I popped my knees out. Saturday I popped my thumbs, ankle and neck. The neck was very painful and I had a panadol forte to help with that.

EDSgirl

Trialing Mattresses

Hi All,

Just a quick note to say that I have been trialing mattresses at the moment. I am pretty sure I have posted about it in a previous post. I trialled 2 last week and I HATED them. I was in so much pain that at 4.00 I had to get my family help me change the bed around on the second one as I was crying  in pain. I now have a different one and I am laying on it as we speak. It is not very comfortable but I am going to try it for tonight. I also went today to a shop and they had a bed which was VERY comfy I loved it. So I passed the details on to my OT today as we had an appointment with her today. She is going to get me a trial so I am very happy. I hope I can find something comfortable as honestly I am getting a little sick of it even though I know it will help. My OT is also going to get me some taps, a hand held shower hose and a rail for the shower. I am also getting a three wheeled walker for around the house
EDSgirl

Update

Just wanted to sat that I went to another doctor and I don't have Marfans which I am pleased about. She explained to me about it which made me believe I don't have it so I am happy. I am in heaps of pain so this is just a quick update

Marfans, and stuff

Hi All,

I promised I would write an update today. I saw some doctors what I got out of it was:

• My thyroid levels were good YAY!
• I have a mild form of Marfans Syndrome
• I have Chronic Fatigue Syndrome
• I need a proper heart check and I may need heart surgery
• The doctor I have been seeing (endo) couldn't care less so I am going to change doctors! I don't like being brushed off by doctors who don't do their research into EDS

I think that I need some sleep and a bit of time to get myself sorted.

God Bless
EDSgirl

Fall

Hi All,

Today I had a fall and popped my hips out of joint :( I am in a lot of pain and am ready for bed. Tommorow I have the endocrinologist so I will let you know what he says

EDSgirl

Busy, busy, busy

Hi All,

Not much to report this week. I have been really busy and when I am busy I get more sore than usual so I don't feel like posting. I am looking at doing some things to help me such as getting a muscle stimmulating machine and a electric heat pack. I will keep everyone updated.

EDSgirl

Headaches

Hi All,

I get extremely bad headaches. We still don't know why I am getting these headaches- more and more testing. When I get really bad headaches, like today, I snap at my family who try so hard to help me. I am trying to learn to not snap but sometimes I do and feel awful for it.
Today I am feeling really tired, sore, headachy and irritable.
I wanted to sleep all day but I need to get up early in the morning.
Hopefully tommorow is better
EDSgirl

Lots Happening

Hi All,

On Wednesday I had 3 doctors appointment. The first was with that wonderful GP who knows about EDS. We were in there for an hour and she made up a care plan asked about how EDS affected me etc. She also said to come to her with any issues physical, or emotional because lets face it. Living with chronic pain is HARD! Even when I pretend I'm fine. Then I had an appointment with second skins to get fitted for new hand splints. I got to the area quicker than expected so I went to the shops for 5 minutes to get something to eat. Well I went in got myself something to eat that was all OK. Then on the escalator a woman she must have been in her 60's ran through and I fell dislocating my collar bone further than usual and my knee- so there I am screaming in pain and she RAN off! Now that is just plain rude. I wouldn't have minded so much if she had have apologized and helped me. She may not have meant to hurt me, but that isn't the point she did and the least she could have done is apologize. There is no way that she didn't know I was hurt. She wasn't to know I have a disability but she could have knocked a small child or an elderly person over just carelessly rushing like that!! Then I still had 2 appointments. I went to second skins and luckily they had a sling as I didn't have one in the car! You would think with someone who dislocates all the time you would have a sling! The appointment went well and they were very very careful not to hurt me more as I was visibly in heaps of pain by the time I got there. Next I had an appointment to get my leg/hip strappings. They fit well and are working well so all happy there. I am also trialing a mattress at the moment- a latex one. To be honest I hate it it is making my pain worse and my sleeping worse than it already is. I have been trialing it since Monday its not working. I am going to trial another one soon so I will keep you all updated as to how they go. Tommorow I am going to meet someone else with EDS so very excited.
Love and Hugs to you all
EDSgirl

An average day

Hi All,

I thought it might help if I explain what an average day is like for me

I wake up- between 7 and 11am- it really depends on the sort of night I have had and whether or not I have to go out. I have to put several joints back in where they have come out overnight. Then I get some breakfast (my nausea is worse in the mornings and when I am eating). After breakfast I may or may not bring whatever I ate back up. If I do bring it back up it dislocates my jaw and leaves me with a headache and sore throat for the rest of the day. Then I may lay down for a while. I then will get dressed- I try to find clothes that are loose fitting and easy to get on. I will pop joints out while doing this. I then have to do my hair BIG CHALLENGE- I usually get someone else to do it as it is really painful for me to do it and my shoulders come out. After that it depends on what I do during that day. At lunch and dinner the nausea isn't as bad and I don't usually vomit but I can do. After dinner I usually do what I have to do and tidy up a bit around the place. Then I get into bed, watch some TV, use the laptop and read a bit. The day takes a lot out of me and although I often have naps during the day by night time I am exhausted and in heaps of pain that the pain killers don't do much for. I haven't put evertything here. I have other things I do such as physio, doctors appointments, washing, cleaning etc that causes problems as well. I also wake up 5 or 6 times a night in pain. I can sometimes get only 2 hours of sleep at night and still have to go about my day to day life. It is hard to get through things somedays and the day I am describing is a GOOD day! Somedays the pain is so bad I can't get out of bed and the nausea so bad I can't eat. I hope this gives you an insight into my life.

EDSgirl

Awareness, Health and Sadness

Hello to all,

I just wanted to say that I am trying to raise as much awareness as possible for EDS. Please get your friends to like and share my facebook page facebook.com/EDSAWARE
Also can those reading this please have a look!
On my health- my hip is very sore today as I did too much yesterday so today I had a 'crash' day and didn't do very much! I am hoping to see my doctor soon. Also we found a new doctor that knows about EDS which is always a bonus!! It is hard when you have a GP that doesn't understand a lot about your condition especially when it is as dangerous as EDS.
On the illness being dangerous, it really is. Another with EDS died a few days ago who didn't have vascular and had been married just 6 days before. She was on her honeymoon :( When you are at the prime of your life you should have no fear of dying. With this condition it is a blessing just to wake up in the morning, even when you know that you will be in pain all day. Many doctors are misinformed and think that Vascular EDS is the only type that kills. This young lady's death has just brought home how easily my life could be taken away. So I will leave my life in God's hands.

Love to all,
EDSgirl

Bursitis

Hey all,

Last time I posted I mentioned my hip popping out. I now have bursitis in the hip which was so painful I was ready to go to the hospital but I waited it out. My doctor has upped my medication and it seems to be helping.
Once I am feeling better I will post a little more

EDSgirl

SURPRISE!!

Hi,

Over the weekend I spent time with my friends, was feeling very sore but I had a great time with them and it was all worth it. Then last night I got up and went to the kitchen... I ran into a chair, fell over and popped my hip out! I was feeling very sore and sorry for myself. My aunty is an artist and she had painted me a  zebra and put it in a frame for me :) She also made copies so that I can put them in cards to sell with my facebook page and the other things I sell. I am very happy and she cheered me up and we had a nice visit together as well.

EDSgirl

My Knee

Hi,

Last time I posted about a lot of pain in my knee, it has got down over the past few days. I had a doctors appointment yesterday anyway so I got him to check it just to be safe and I have overstretched some tendons and ligaments. I do that rather often. I am glad it is nothing more serious and it was just the initial pain that was so bad. It is improving a lot and I will be back on my feet soon enough! The doctors still can't figure out what is wrong with me so I am being sent to an endocrinologist

EDSgirl

Pain Pain Pain Pain Pain

Hi All,

I have done something stupid to my knee. Different to anything I have ever done before. I was walking and there was a clunk and a thud and heaps of pain. I can walk on it a bit but it is really sore (baring in mind that I have walked on a broken foot) So I am worried  if it is still really bad in the morning I may have to get it checked out...
UNIVERSE STOP TESTING ME PLEASE!!

Goodnight all

30 Things you may not know about my invisible illness

1. The illness I live with is: Ehlers Danlos Syndrome
2. I was diagnosed with it in the year: 2006
3. But I had symptoms since: I was born
4. The biggest adjustment I’ve had to make is: Learning to pace myself and learning to not feel ashamed
5. Most people assume:  That I put it on
6. The hardest part about mornings are: Getting out of bed and getting ready because I have bad nights
7. My favorite medical TV show is: Grey's Anatomy
8. A gadget I couldn’t live without is: My TEN's Machine
9. The hardest part about nights are: Getting comfortable and sleeping through the night!
10. Each day I take _36_ pills & vitamins.
11. Regarding alternative treatments I: Go to Bowen Therapy and take vitamins
12. If I had to choose between an invisible illness or visible I would choose: I don't know there are pros and cons to both
13. Regarding working and career: I work from home when I am well enough
14. People would be surprised to know: That I am scared of chickens!!
15. The hardest thing to accept about my new reality has been: The fact that my body lets me down and it will continue to do so
16. Something I never thought I could do with my illness that I did was: Sandboarding
17. The commercials about my illness: There is no advertising
18. Something I really miss doing since I was diagnosed is: Being Normal or at least not seeming sick
19. It was really hard to have to give up: Dancing and Acting
20. A new hobby I have taken up since my diagnosis is: Scrapbooking
21. If I could have one day of feeling normal again I would: Live it to the fullest!
22. My illness has taught me: That I need to laugh at my situation.
23. Want to know a secret? One thing people say that gets under my skin is: "But you don't look sick"
24. But I love it when people: Surprise me by saying that they know what EDS is and help me and don't judge me
25. My favorite motto, scripture, quote that gets me through tough times is: "Worrying does not empty tommorow of its troubles it empties today of its strength" Corrile Ten Boom
26. When someone is diagnosed I’d like to tell them: That things will get better, they need to laugh and find new things in life
27. Something that has surprised me about living with an illness is: Is that even though I need to take a lot more time to do things it doesn't mean that I can't get them done eventually. And also the exhaustion you feel at times
28. The nicest thing someone did for me when I wasn’t feeling well was: Come to visit me with flowers and hot choclate and marshmallows
29. I’m involved with Invisible Illness Week because: I want to raise awareness
30. The fact that you read this list makes me feel: Glad

Busy, Busy, Busy

Hi,

My health has still been going downhill so I had a whole lot more tests today. Hopefully I will get the results of them on  Monday. Besides being busy with my own health, I have been busy with making awareness products. I have over 30 orders!! Looks like I will be needing more ribbon. I am really enjoying making these products and I am glad that people want these. I am just covering my costs and any profit that I do get goes to Ehlers Danlos Syndrome charities. I have been busy but have been enjoying it so much and it definitely doesn't feel like work.

EDSgirl

Trying to do my bit to raise awareness

Hi Guys,

It has been a few days but I have been tired and busy. I am now selling awareness items on facebook. I have made ribbons, magnets and keychains. If you are interested please go to  http://www.facebook.com/pages/Ehlers-Danlos-Syndrome-Awareness-Products/258260627609061
I have had so many orders and I am thankful to the people that have ordered. I am having a lot of fun doing it. The keychains are coming :)

EDSgirl

I had a bad day :(

Hi Guys,

IN ADVANCE: THIS MAY BE A DEPRESSING POST

Today I went to my physio who I will call P for the sake of this post. She said that my muscles are just wasting away so I may have a muscle wasting disorder. And I need to get testing to see what is going on. P is very worried about me and says I am too frail and if they don't figure out what is wrong I will continue to get worse and worse.
Then I went to my Bowen Therapist I will call her B. B said that my scoliosis has got to the point that I need surgery before it gets much worse. I am scared and worried. I know that I need the surgery but I am scared of something wrong happening because no surgery is simple with EDS and this is a BIG surgery.
Oh well I will have to wait and see and talk to some doctors.
If any of you have had this surgery please comment about your experience.

Thanks
EDSgirl

So am I to add Addisons Disease to my list?

Hello,

I am AMAZED!! Yesterday I went to get a molescan and I was telling the doctor (who I have never met) that I have Ehlers Danlos and he said "oh yes I know what that is, I just skimmed over it in med school" then he proceeded to tell me a lot about it, why, what it affects. He told me more than my doctor has told me in 6 years in under half an hour. Then when he got to my back and saw my scars that my doctor said were caused by growing. HAHA.
He asked me if I had ever been tested for Addisons disease. No I haven't. He said that I have the signs of it then he touched my bones which made me whimper in bone and said that more than likely the Addison's is eating the bone (in a round about way) So maybe I don't have Chiari YAY! I looked Addisons up and I do have the signs. Hopefully I will find out within the next couple of weeks.
I am feeling mixed emotions about this, but at least it is a step in the right direction. I am thankful to that doctor.
I am having a bad day today in a lot of pain and tired (didn't sleep well last night) and feel as though I am coming down with the flu.

Have a goodnight
EDSgirl

Laughing it off

Hi,

One thing that I have learnt threw my EDS journey is that I need to laugh at things. I think this really helps me to get through. If I cried every time something went wrong so now I laugh and make a joke when something happens. This is one of the best lessons I have learnt

EDSgirl

Overdoing it and Adjusting

Hi,

I have found that because I am sick most of the time when I do have a good day I tend to over do it and then I have a string of bad days after that. Yesterday I was feeling heaps better than I have been lately so I did a lot of errands that I wanted to do yesterday morning, then I had a doctors appointment in the afternoon and then I went out with some friends last night. Today I am utterly exhausted and am laying in bed resting up and taking a lot of pain killers. I am glad that I went out yesterday as I had a really good day and had some sense of normality which I am losing lately but I am paying for it today. I have found that I have to way up the odds and prioritize do what is absolutely necessary before doing the things that I have to do. I suppose I need to learn to know my limits so that I do not suffer the next day- but is the price to pay for that giving up a normal life? I don't want to do that but I have to keep my body as strong as possible so I can do what I have to do. I am learning to adjust and mourning for the old me- the life I have lost. I may put up a brave front but I do miss the person I once was even though I was never 'normal'. Last week the doctor told me basically that this is it and I will continue to deteriorate and I need to enjoy my life while I am still well enough to live it to some degree. I am still in shock even though I knew it was coming. So at the moment I am adjusting and getting used to the way that I now have to live my life.
Sorry if this post is a bit depressing
EDSgirl

Thankfulness

I wanted to write a list of things I am thankful for some have come to me after I was diagnosed with Ehlers Danlos:

1. Waking up in the morning- I now appreciate waking up in the morning because it is now uncertain as to how long I will be here for.
2. God- My faith in God gets me through everything and I couldn't live without it.
3. My Family- The support my family has given me is amazing and I couldn't do it without them
4. My Friends- I am blessed to have some wonderful friends who help me all the time and cheer me up when I get a bit down.
5. The Ehlers Danlos Community-The friends I have made in the Ehlers Danlos Community are amazing and offer support for me
6. Scrapbooking- Scrapbooking is a hobby of mine and it keeps me sane! I love it
7. The Wonderful Doctors- I have some amazing doctors who work on me and help me whenever I get sick (fairly often) and I am grateful for them

That is my list of thankfulness for the moment I may add to it from time to time in other posts as I remember things.

EDSgirl

Leg is out of the immobolizer

Hi,

My leg is finally out of the immobilizer and I am able to bend it. When I go out I am still using when I go out to give it extra support and keep it safe but it is feeling much much better!!

EDSgirl

More Detailed Look into what Ehlers Danlos is

Hi,

I know that my description of Ehlers Danlos wasn't very in depth so I thought that I should write a more detailed post about it. If any of you think I have missed something out please tell me and I will add it in :)

Ehlers Danlos Syndrome is a connective tissue disorder which is caused by a lack of collagen. Collagen is found in 90% of the body and is basically the glue that holds the body together... without it you fall apart. Ehlers Danlos Syndrome is a chronic condition that until such time as a cure is found it isn't going to get better... or as I had doctors tell me when I was younger 'grow out of it. Doctors often think that Ehlers Danlos Syndrome is growing pains or the person who has all the medical problems is a hypochondriac or is just seeking for drugs. Until someone diagnoses the person and then all the pieces of the puzzle fall into place.
There are several different types of Ehlers Danlos Syndrome:

• Classical- This type causes- joint hyper mobility, smooth, stretchy velvety skin that bruises easily, dislocations and sublaxtions of the joints and scoliosis
• Hyper-mobility- hyper-mobility and dislocations/sublaxtions of the joints
• Vascular- increased risk of rupturing, visible veins through the skin and dislocations/sublaxtions. Vascular Ehlers Danlos Syndrome is the most life threatening type of Ehlers Danlos.
• Kyphoscoliosis- fragile globe of the eye, joint hyper-mobility, scoliosis and dislocations.
• Arthochalisia (this is the type that I have)- joint hyper-mobility, skin issues, dislocations/sublaxtions particularly of the hips.
• Tenasin-X- This is a new type that they are doing research into at the moment- joint hyper-mobility, hyper-elastic skin and dislocations.

The different types of Ehlers Danlos are each classified according to the differing symptoms. These are in no way the only symptoms that each type has but just a general idea of what the doctors look for when diagnosing the specific types. Even people with the same type can have differing symptoms and levels of severity. In every type of Ehlers Danlos there are certain symptoms such as fragile skin and loose joints which each type has. Every type of Ehlers Danlos can have life threatening complications not just vascular even though there is more of a risk with vascular. Ehlers Danlos Syndrome is an inherited disorder.

Hopefully this was a bit more in depth and helpful.

Love,

EDSgirl

Bedding Specialists, Occupational Therapists and Physios

Hi,

Today some bedding specialists, occupational therapists and physios came out. I really liked the bedding specialists they were really nice and had some great ideas so that I can get a better night sleep. My Occupational Therapist had just got married so I had a look at her wedding photos. My physio is going to send me out some exercises to get my knee active again. The bedding specialists think that I may have Periodic Limb Movement Disorder- I have read through the symptoms and it does sound like what I do at night!! I am rather sore today and very tired as I had a bad night sleep. Hopefully this will help and give me a chance to get a proper nights sleep. The bedding specialists have some ideas to help my thyroid problems all these things are good so I am heading in the right direction.

Thanks,

EDSgirl

Capsule in Knee

Hi,

Just wanting to put a note here for my own benefit. Last Saturday 9/6 I had a fall and tore the capsule in my knee. It has been quite painful and has been in an immobilizer ever since. Tommorow I will see my physio and she will give me some exercises to do to help get it mobile again. It will be good and I will be up and about again before I know it.

EDSgirl

Symptom List

Today I am going to do a list of my symptoms- there is a lot: I want to make it clear that not every person has the same symptoms. As well as Ehlers Danlos Syndrome I have Postural Orthostatic Tachycardia and Hypothyroid
These are my symptoms:

• Dislocations (of every joint in the body)
• Subluxtions (of every joint of the body)
• Pain
• IBS
• Chronic Fatigue
• Dental and gum problems
• Painful skin
• Stretchy Skin
• Velvety soft skin
• Flat feet
• Hyper mobility
• Muscle weakness
• Clumsiness
• Poor wound healing
• Abnormal Scarring
• Nearsightedness
• Curvature of the Spine
• Weak Blood Vessels
• Leaking Valve in heart
• Easy Bruising
• Blue Sclera
• Low Muscle Tone
• Fainting and Near Fainting
• Palpitations
• Shortness of Breath
• Chest discomfort
• Loss of Sweating
• Nausea
• Abdominal Pain
• Migraines and Headaches
• Tachycardia
• Intolerance to Heat
• Light and Noise Sensitivity
• Arrhythmia's
• Small Appetite
• Dry Coarse Hair
• Dry Skin
• Decreased Concentration
• Blood Clotting Problems
• Brain Fog
• Ringing in the Ears
• Poor Blood Circulation
• Loss of Smell
• Blood Clotting Problems

So they are my symptoms

Thanks EDSgirl

Ehlers Danlos Syndrome

Hi,

I am writing a blog to raise awareness of Ehlers Danlos Syndrome and to record the daily happenings of my life that include Ehlers Danlos Syndrome. I will most likely refer to Ehlers Danlos Syndrome as EDS.
What is Ehlers Danlos?
Ehlers Danlos is a connective tissue disorder caused by a depletion of collagen which makes up 90% of the body. Ehlers Danlos affects every part of the body.
I want to help people to understand Ehlers Danlos Syndrome and I think that this may be a way to do it.

Thanks,
edsgirl