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
Wednesday, 29 August 2012
Tuesday, 21 August 2012
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
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
Saturday, 18 August 2012
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
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
Tuesday, 14 August 2012
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
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
Saturday, 11 August 2012
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
Tuesday, 7 August 2012
Marfans, and stuff
Hi All,
I promised I would write an update today. I saw some doctors what I got out of it was:
God Bless
EDSgirl
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
God Bless
EDSgirl
Monday, 6 August 2012
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
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
Friday, 3 August 2012
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
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
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