tag:blogger.com,1999:blog-61444183375963664872024-03-04T22:52:50.092-08:00Rachael's JourneyThis Blog is about my life with many medical conditions. I hope this blog will help people who are chronically ill and also help my family and friends to understand me.edsgirlhttp://www.blogger.com/profile/05670922214975559895noreply@blogger.comBlogger122125tag:blogger.com,1999:blog-6144418337596366487.post-1048030366247430302017-03-08T03:14:00.001-08:002017-03-08T03:16:32.963-08:00How I am feeling about the surgeryOn the 15th March I will be getting my bowel removed, people have been asking how I am feeling about it all... and to tell you the truth there are so many emotions going through my mind that I really don't know how to answer this question but I am going to try and answer it as best as I can.<br />
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I am scared, this surgery is incredibly high risk, we don't know if I will come through it but this surgery is needed- I don't have another option. I am scared of leaving those I love behind, I don't want my mum to have to go on without me, I am scared of this surgery not helping as much as we are hoping it will and going through all of this for nothing- but I can't go on like this and not at least tried to improve my life.<br />
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I am excited, I am excited about the prospect of a better life, I am excited about the prospect of less abdominal pain.<br />
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I am hopeful, I am hopeful that this will help and that this will be the best thing that I could have done for myself.<br />
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I am at peace. I am at peace that God knows what he has in store for me, I am at peace that my surgeon is amazing and is going to do everything in her power to help me.<br />
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Thank you to everyone for caring so much about me and asking how I am. I really appreciate it.<br />
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I will probably do some more blog posts as the surgery gets closer... 1 week today until surgery!!edsgirlhttp://www.blogger.com/profile/05670922214975559895noreply@blogger.com0tag:blogger.com,1999:blog-6144418337596366487.post-46411072878255656612017-01-06T07:47:00.002-08:002017-01-06T07:47:11.787-08:00What am I proud of and not proud of?The Mighty is doing a challenge called "My Mighty Month" which is a set of challenges, I didn't want to do all off them and I didn't want to submit them to the Mighty but I still found some of the challenges interesting and wanted to do them so I thought I would do them here.<br />
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This prompt is "Name 5 things you are proud of and 5 things you are not so proud of", I have only done 3 of each because I found it hard to think off things.<br />
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What am I proud of?<br />
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1. <b>The Fact I am still Fighting</b>: Even though things have been tough I am still here and I am still fighting for my life- yes its hard, but I don't want to give up. Everyday is a challenge but I am still getting up every morning and doing the best I can.<br />
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2. <b>How I still get out and volunteer</b>: Even though I am sick and getting out and about is hard I still get out and volunteer because I think it is important to help others when you are able too.<br />
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3. <b>The Way that I handle my Medical Conditions</b>: I try my best to have as much knowledge as I possibly can about my medical conditions so that I can do the best to manage my conditions. I keep up with my treatments and medications and my physiotherapy.<br />
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What I am not so proud of?<br />
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1. <b>The fact that I can get pretty cranky with those I love most when I am really not well</b>: I know this is probably a natural thing to get cranky when you are not well but I still don't like it when I snap at those I love (especially mum), I regret it the moment I do it but I need to learn to think before I say things, to take deep breaths and think about whether what I am saying sounds snappy.<br />
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2. <b>That I am not catching up with friends as much as I would like</b>: This is because I am sick and in pain and its hard and exhausting to get out but I should still organise catch ups with people more often and enjoy time with the ones that I love.<br />
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3. <b>That I indulge in "retail therapy" a bit too much</b>: Sometimes, especially when I am not well, I like to have a bit of retail therapy, new things such as new makeup makes me happy and while its okay to do that sometimes I really need to save a bit more and not shop so much.edsgirlhttp://www.blogger.com/profile/05670922214975559895noreply@blogger.com0tag:blogger.com,1999:blog-6144418337596366487.post-47935548214799242142016-12-21T07:26:00.002-08:002016-12-21T07:26:22.664-08:00New Years Resolutions for 2017New Years can be a little tough for me- as it forces me to focus on the year that has passed and everything that has gone on. This year has been tough and I have had a lot of health stuff going on so I have decided to refocus and make some resolutions of goals that I would like to achieve in the New Year.<br />
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This year is going to be tough because as of this moment I am scheduled for 4 surgeries so I don't want to be overly ambitious. I would like my goals to be achievable so here are my goals for the New Year.<br />
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1. <b>Spend Less on Makeup</b>: I am not putting myself on a "no buy" because every time I do that I fail because it is unrealistic. I would like to spend no more than $50 every 3 months (except for special occasions like my birthday then I can buy something nice for myself) and for the most part only replace things when I run out of them i.e instead of having 3 different foundations finish the majority of that item and only buy one when the one I am using is almost empty.<br />
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2. <b>Do More for Others</b>: I have so many amazing people in my life that do amazing things for me. It can be hard for me to do much for others because of my limited energy but I would like to aim to choose one person each month to do something nice for even if it is very minimal just do something that makes someone else smile.<br />
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3. <b>Blog More</b>: I would like to try to blog more. I know I haven't been blogging much, part of that is due to my health and part of that is not knowing what to blog about. I have heaps of ideas but don't know where to start. I would like to blog at least once a fortnight whether it is on this blog or my makeup blog. It would be great to be able to do a post once a fortnight on each blog but I don't want to be overly ambitious to start with.<br />
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4. <b>Read the Bible More:</b> I find it hard to read the bible a lot because I have found reading hard with my headaches so I would like to use one of the audio versions if possible or just read very small amounts- anything is better than nothing.<br />
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Thank you so much for reading. If you have any comments or questions or requests for blog posts please comment below and I hope to be posting a lot more in the new year.edsgirlhttp://www.blogger.com/profile/05670922214975559895noreply@blogger.com0tag:blogger.com,1999:blog-6144418337596366487.post-58906859389120057952016-10-22T00:49:00.000-07:002016-10-22T02:01:29.555-07:00Hospital Stay October 2016For the past few months I have had a lot of bowel pain and my ileostomy would randomly stop working. I went to the ER multiple times and they did an X-ray and sent me home each time. On the 14th October we went to the emergency room because I was doubled over with stomach pain, could barely walk and was vomiting. We waited in the waiting room for a while before being taken back, they took some blood and did an X-ray, nothing came back on the X-ray but my infection and inflammation markers were up so they decided to do a CT scan. They discovered that I had colitis which is a bowel inflammation or infection (as far as I understand it anyway). They immediately hooked me up to IV antibiotics and admitted me to the surgical ward. They were worried that I would become septic and also that they would have to do an operation. It took me a long time to improve. I was being closely monitored. They were giving me lots of IV fluids and checking my blood work everyday to monitor how my inflammation and infection markers were doing. On the 17 they decided that they would do a colonoscopy (they were planning for the next day) and started me on a clear fluid diet and they inserted a catheter into my stoma (ileostomy) to put the bowel prep through. As I still have my large bowel they had to clear that as well as the small bowel. The bowel just would not clear though so I was on a clear fluid diet for 4 days waiting for surgery. I was getting very weak and looking very pale. They ended up 11.5 Litres of Colonlytely, 2 litres of Pico Prep and 2 Enemas to get my bowel clear- it still wasn't 100 percent clear but they decided to do the colonoscopy anyway so on the 21st at 8am they got me ready for theatre. When I got there there was a lovely anaesthesiologist who decided with my medical history and my high risk of aspiration they decided instead of doing heavy sedation they would put me out completely so that they could protect my airway. We are so thankful they did that because as they were about to wake me up I started vomiting (even though I had barely anything in my stomach besides clear fluids) and almost aspirated so they had to take over my airway again and put an NG down to suction my stomach. They said that if they hadn't decided to put me out completely I would have got aspiration pneumonia and been in hospital a lot longer, I was able to go home that night. I am VERY sore from being jolted around when I almost aspirated (as they were obviously more focused on protecting my airway than my joints).<br />
The colitis is pretty much all cleared up now and the surgeon said the colonoscopy didn't pick up anything obvious but they have taken some biopsies.<br />
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I just want to thank all the staff for how well they took care of me but especially the nurses they were so kind and caring and really helped keep my spirits up while I was admitted.<br />
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It was such a hard admission on me emotionally as all I wanted to do was be home with my family, my service dog and my cat. I cried a lot but I got through it. Thank you everyone for all of the prayers , love and support. I really appreciate it. It helped me more than you know.<br />
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I hope to be back to blogging shortly but it has been tough with how sick I have been.edsgirlhttp://www.blogger.com/profile/05670922214975559895noreply@blogger.com2tag:blogger.com,1999:blog-6144418337596366487.post-21889601619396498102015-12-24T00:07:00.000-08:002015-12-24T00:07:34.872-08:00Hospital Take 2On Friday the 18th December Mum brought me back to the hospital at about 6pm because I was in a lot of pain. I was brought straight back (I think they saw my NG tube and that made them act quicker or else I looked as sick as I felt haha) and given a canula, fluids and colonlitely. Multiple doctors came in and they decided to admit me since I was waiting for a stoma surgery anyway. At about midnight I was finally given a room, I had a bad night with pain that they just couldn't control.<br />
On Saturday the surgeon came in and told me that I would be getting a stoma (illeostomy to be exact) as soon as they had a spot.<br />
On Sunday nothing much really happened but they gave me an enema (even though I told them it would fall straight out- surprise surprise it did...) and pico prep but it didn't work. Uncle Adrian came to visit. And I was told to fast from midnight as in the morning I would be getting the stoma.<br />
On Monday I got up at 6am to get ready for theatre. The surgeons came up at 9:30 am and told me they were tossing up as to whether to do another ACE using part of my bowel (which didn't really want as I was afraid it would close up again, there is a high risk of the bowel dying which would mean I would get a stoma anyway and the ACE didn't really always work). I waited all day long and at 5:30pm they decided that the stoma would be the best option and I would be getting it on Tuesday. I was really blessed to have so many visitors that day, Aunty Vicki visited and bought me a "get well" teddy bear, Nia visited and bought me some makeup (which I desperately needed in the hospital haha) and a bag , Aunty Julie visited and Mum was there all day long. Once I was off fasting Mum went down to Hungry Jacks as I had been craving it since I was admitted- I didn't eat much of it but it was still so nice :)<br />
On Tuesday I was told I was going to have surgery at 10am so they got me up really early to have a shower. At 9am the surgeon came in and said he really didn't think that the surgery was going to happen today so because I fasted for 18hrs the day before he really didn't want me to keep fasting so I had a sandwich at 9:30. At 11am the anaesthesiologist came around to ask me some questions and take me to surgery!!! But we had to tell him I had eaten so he said they would have to do the surgery at 3:30pm if they did it. He went and spoke to the surgeons and they said to not do it. It is incredibly frustrating but they discharged me at 4pm on Wednesday so at least I get to be home for the holidays :)<br />
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Thank you for all your prayers- sorry I haven't really replied to many messages I have been resting as much as possible but I will get around to replying when I am able :)<br />
<br />edsgirlhttp://www.blogger.com/profile/05670922214975559895noreply@blogger.com0tag:blogger.com,1999:blog-6144418337596366487.post-60579066728819881232015-12-09T07:43:00.002-08:002015-12-09T07:43:42.926-08:00Hospital<span style="font-family: Arial, Helvetica, sans-serif;">As most of you probably know by now I have been in hospital over the past week. I am home now but still very sick but I wanted to fill you in on whats been going on.</span><br />
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<span style="font-family: Arial, Helvetica, sans-serif;">I have a ACE (other terms for it is a appendicostomy or Malone Procedure. This is the definition</span><br />
<span style="background-color: white;"><span style="font-family: Arial, Helvetica, sans-serif;"><span style="color: #222222;">the surgical operation of opening the vermiform appendix to irrigate the large intestine.It is basically a procedure where they use the appendix to make a channel to the bowel for chronic constipation. I have had this for 3 years and have been incredibly happy with it and never had any issues with it... until this saturday.</span></span></span><br />
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<span style="background-color: white;"><span style="font-family: Arial, Helvetica, sans-serif;"><span style="color: #222222;">So backtrack to Thursday I was due to have a clean out but I had come down with a stomach bug and I was told when I first got the ACE if that happened to not do a clean out until a day after the virus was finished. So Saturday I went to do my </span></span></span><span style="color: #222222; font-family: Arial, Helvetica, sans-serif;">clean out and could not get the catheter in any more than where the plug stopped, it was bleeding and the liquid was spitting back out at me. Waiting out Saturday night and Sunday was so hard but on Monday we went to my GP Dr. Lomas (who I LOVE!) She and her nurse tried to get it open with cervical dilators (haha!) but it wouldn't go in and we didn't want to push it to much and end up in emergency surgery. She told us that she would call the stoma nurse and the colo-rectal and surgical team to try and get me in but she couldn't so Mum rang up and they told me to come straight into the ER and that the surgical team would be waiting. The hospital was an hr away so we jumped straight in the car and headed up there, we didn't pack a bag as we didn't think I would be admitted... how wrong we were. </span><br />
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<span style="color: #222222; font-family: Arial, Helvetica, sans-serif;">The surgeon attempted to open it while I was awake even though I didn't move he couldn't get it and he didn't want to push and perforate the bowel so he admitted me to get some images to know where to aim. When he did a Xray he said that he didn't want to attempt it and I would be spending the night at the hospital... the first inpatient stay since I transitioned to the adult hospital. I finally got into the room at 8:30pm. I was EXHAUSTED! I got a heparin shot (by the end of the stay my tummy looked like a pin cushion. I also got some IV nausea meds and pain meds.</span><br />
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<tr><td class="tr-caption" style="text-align: center;">In the ER</td></tr>
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<span style="color: #222222; font-family: Arial, Helvetica, sans-serif;">The next morning I woke up at 4am and couldn't fall back asleep. I had another heparin shot . The stoma nurse came to see me and told me that my ACE looked like it had been well taken care of and it wasn't my fault. The surgeons came round and ordered a contrast study and fistula gram and told me I would most likely be in that night as well. They tried to remove the blockage with wire but were unsuccessful and once again didn't want to perforate the bowel. The contrast study didn't work because the liquid kept pouring out as the hole was closed (I knew that was going to happen). </span><br />
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<span style="color: #222222; font-family: Arial, Helvetica, sans-serif;">Thursday morning was rough. I was meant to go to Rocky Bay's Walk with Me event as an ambassador but I was too sick to go. I also got rough news from the doctors- They told me that it looked like the ACE was completely blocked- due to scar tissue from EDS and the weight I have gained from the steroids. They talked about giving me a stoma bag. </span><br />
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<tr><td class="tr-caption" style="text-align: center;">Still a Zebra</td></tr>
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<span style="color: #222222; font-family: Arial, Helvetica, sans-serif;">On Friday I had surgery to do a manual evacuation and try and reopen my ACE but as suspected it is completely blocked up. I have to make some tough decisions- and soon. I slept most of the day and had a fever on and off all day. </span><br />
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<tr><td class="tr-caption" style="text-align: center;">Before Surgery</td></tr>
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<tr><td class="tr-caption" style="text-align: center;">After Surgery</td></tr>
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<span style="color: #222222; font-family: Arial, Helvetica, sans-serif;">On Saturday I was planning to hold a scentsy party- I was really disappointed not to be out on time. I had to stay in to TRY and clean out my bowel as the manual evacuation didn't work. I got a NJ tube placed and got 3 litres of colonlitely through the NJ tube, 8 suppositories and a enema and still didn't go to the bathroom as much as they were hoping I would be. </span><br />
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<span style="color: #222222; font-family: Arial, Helvetica, sans-serif;">On Sunday the variety christmas party was on and I had promised i would take my nieces and nephew. They let me out for the day but I had to come back. I was so sick the whole time, I could barrely keep my eyes open. When I got back to the hospital my blood pressure had gone from 100 to 150! I was in my wheelchair the whole time and didn't do much but I still got so sick from it. When I got back they put some pico prep through my NJ tube to prepare me for a enema on Monday. </span><br />
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhviiGgxKfjNHjK1WqUBFTUsaR6qzRihOzPqv2QVKJ6TlEZ7Aqcqd0Z-wtALcCnATarMGnb7jKtWI_g0uaOm9bx2jRwOqyV2diQTGc_mGy0_LCsDd2wEXpJBnBe9jCM7n-FadspjtqW1VA/s1600/Hospital+Stay+Sunday.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhviiGgxKfjNHjK1WqUBFTUsaR6qzRihOzPqv2QVKJ6TlEZ7Aqcqd0Z-wtALcCnATarMGnb7jKtWI_g0uaOm9bx2jRwOqyV2diQTGc_mGy0_LCsDd2wEXpJBnBe9jCM7n-FadspjtqW1VA/s320/Hospital+Stay+Sunday.jpg" width="180" /></a></div>
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<span style="color: #222222; font-family: Arial, Helvetica, sans-serif;">On Monday I was taught how to use the NJ tube and was allowed home, on the conditions that I put colonlitely through the NJ and rested as much as possible. I was told I am still very sick but until I make decisions they can't do a lot for me. Now I have to think about the future and my quality of life. EDS is cruel and hard and it always reminds me how life can change in an instance.</span><br />
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhMEjC_a8oPygzMCmFNa_Kqik5PM7kNB4lXIk8SAypMgnNCPv6sYgt9-TIZ_N4O8kT4b571xfQ7TOudcTtYaSeBRqFDWqXsC_oiWSJ7Iy9pgROJT_AaC_pK6oJMlYd1BZCOT3i3czrTmVU/s1600/Change.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhMEjC_a8oPygzMCmFNa_Kqik5PM7kNB4lXIk8SAypMgnNCPv6sYgt9-TIZ_N4O8kT4b571xfQ7TOudcTtYaSeBRqFDWqXsC_oiWSJ7Iy9pgROJT_AaC_pK6oJMlYd1BZCOT3i3czrTmVU/s320/Change.jpg" width="213" /></a></div>
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<span style="color: #222222; font-family: Arial, Helvetica, sans-serif;">During my stay I missed my service dog Mary so much but I have been told that next time she can stay with me- as she picks up on my seizures before they happen</span><br />
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<span style="color: #222222; font-family: Arial, Helvetica, sans-serif;">I want to thank everyone for their thoughts, prayers, cards and gifts- please remember a kind message means more than an expensive gift.. </span><br />
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEi1V99TqnGRha2HdZR4YVlxeIyY-pR92t9Ze_P3AKZmdsNuZLzSO1SdeYrcEZtfSDuiJ_-fmvJdVR-1B3Yu8qa726RXO_6ByoQEqZ8wtczGvMvOmWxfCZDhSbynzYGCCBuySt2KKaifx0E/s1600/Hospital+Gifts.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEi1V99TqnGRha2HdZR4YVlxeIyY-pR92t9Ze_P3AKZmdsNuZLzSO1SdeYrcEZtfSDuiJ_-fmvJdVR-1B3Yu8qa726RXO_6ByoQEqZ8wtczGvMvOmWxfCZDhSbynzYGCCBuySt2KKaifx0E/s320/Hospital+Gifts.jpg" width="240" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Flowers from Toni</td></tr>
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEg3o5Am21cTtBkWbvnOTNjBjwdOQtFZU1vNpG4CNgObeCXz-fFUlMYMxm0sHTZDGVk1wP21cpfZpXmZe1fXH5jo3YmmCmkyJ5RtYje27KA_CzkQfkYdKHgOaXsXdZNy6UhMPb1jfp8N8UM/s1600/Hospital+Stay+3.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="240" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEg3o5Am21cTtBkWbvnOTNjBjwdOQtFZU1vNpG4CNgObeCXz-fFUlMYMxm0sHTZDGVk1wP21cpfZpXmZe1fXH5jo3YmmCmkyJ5RtYje27KA_CzkQfkYdKHgOaXsXdZNy6UhMPb1jfp8N8UM/s320/Hospital+Stay+3.jpg" width="320" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Flowers from Rocky Bay and my Aunty and Uncle </td></tr>
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhRjntfUujkvsgthZQylS6bDGS51N4f7HwCD3Y6O59aIf6A8cj5ZNu6Cxv1IzhnuIv9DfqngCSNWAo8wWS2ogknzBOetSEPrpgCFqi1PfShUCm2SX63yiT__RGfamUw1h8furfQxOW5yIo/s1600/Hospital+Stay+2.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhRjntfUujkvsgthZQylS6bDGS51N4f7HwCD3Y6O59aIf6A8cj5ZNu6Cxv1IzhnuIv9DfqngCSNWAo8wWS2ogknzBOetSEPrpgCFqi1PfShUCm2SX63yiT__RGfamUw1h8furfQxOW5yIo/s320/Hospital+Stay+2.jpg" width="180" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Beautiful Zebra from a friend it says: <br />"I'm sending you hugs, smiles, sunshine, rainbows and butterflies"</td></tr>
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgFcyNvYyTr-53j1he7EaLEYx1cJzb7axnuQTcdyhu7RKGEwTM72e-zG64M06CAJq3grdLQOOQORZ5IY3FkF_PRJFN24ZThOuQkCcSbhrviV4i5fcXdkIW-AebSNAXSscMH2eHTyJBxeJs/s1600/Hospital+Stay+4.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="240" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgFcyNvYyTr-53j1he7EaLEYx1cJzb7axnuQTcdyhu7RKGEwTM72e-zG64M06CAJq3grdLQOOQORZ5IY3FkF_PRJFN24ZThOuQkCcSbhrviV4i5fcXdkIW-AebSNAXSscMH2eHTyJBxeJs/s320/Hospital+Stay+4.jpg" width="320" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Flowers from my Aunty and Uncle</td></tr>
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<span style="color: #222222; font-family: Arial, Helvetica, sans-serif;">Please pray for me- and family and friends please remember that just because I am home it doesn't mean I am healthy.</span><br />
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<span style="color: #222222; font-family: Arial, Helvetica, sans-serif;"><br /></span>edsgirlhttp://www.blogger.com/profile/05670922214975559895noreply@blogger.com2tag:blogger.com,1999:blog-6144418337596366487.post-4213325463133504742015-10-30T12:46:00.000-07:002015-10-30T12:46:00.152-07:00Things not to say to someone with a chronically ill personThings I don't want to hear as someone with a invisible illness/chronic illness:<br />
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1. But You Don't Look Sick: this one is probably the most common comment when I explain to someone about my health 9 times out of 10 I get this comment<br />
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2. Maybe some vitamins/eating healthy will help: Don't you think we have probably thought of this? I was sick when I was a baby so I am pretty sure it is not that... Yes eating healthy and taking vitamins is always a good idea no matter how healthy I eat I am not going to be cured. Also my stomach is paralysed and it is harder to digest vegetables than more unhealthy things made of sugar because they pretty much dissolve. Some days I have a lot of trouble eating.<br />
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3. Drink more water: I drink tons of water everyday because I have Dysautonomia and it is incredibly important for me to drink water and take salt tablets, sometimes I need IV fluids so I know how important it is to drink water.<br />
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4. Why don't you just go to bed earlier?: I get this comment when I say I am tired but trust me I go to bed early most days I sleep on and off all day and then i go to bed about 5pm to 6pm. It is a type of tired no amount of sleep will cure.<br />
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5. You are SOOO lucky you get to sleep all day I wish I could do that: NO! Just NO you don't. Not being able to do anything is not fun. Not being able to go to work or go out at night with your friends or heck even walk to the bathroom by yourself is not fun. I would not wish this on anyone- not even my worst enemy but I can tell you this life isn't fun. I am envious that you can run around all day and not collapse please remember this before saying this.<br />
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6. Your STILL sick?: That is generally what CHRONIC means. I wish I was better and I could tell you I was better but I can't and saying this makes me feel like I can't be honest about how I feel when people ask how I am most of the time I say "Oh hanging in there" or "I'm fine" because of these comments.<br />
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7. At least its not cancer: Yes I am very lucky to not have cancer but that doesn't downplay my illness- people die from my illness too, it takes your whole life away you have to rest and you can't go out and do things and you do treatments. Just because I don't have cancer doesn't mean its not hard.<br />
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8. Your too young to be sick: Maybe I should show my illness some ID?<br />
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9. Just be positive: I believe positivity is helpful for my mind but being positive is also not going to cure me. Saying I am sick isn't being negative it is just being truthful.<br />
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10. You take to many medications: I am sorry if this is rude but do you have a medical degree and know everything about my health? No? The only people that know whether I am on too many medications is my doctors and myself all of my medications are closely monitored without them I can barely move without crying in pain and I pass out more that 15 times a day so it is impossible for me to go off of them.<br />
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<br />edsgirlhttp://www.blogger.com/profile/05670922214975559895noreply@blogger.com0tag:blogger.com,1999:blog-6144418337596366487.post-29736744084696811262015-10-23T07:53:00.000-07:002015-10-23T07:53:00.112-07:00Accepting HelpOne thing that I have always struggled with for as long as I can remember. I am a stubborn person that wants to do everything myself and don't like people telling me I can't do it (which can be a weakness and a strength). I don't like letting my EDS get in the way of things. But there comes a point where you have to accept help and you have to admit that you can't do everything.<br />
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I hate feeling like a burden, most people don't make you feel like one but there are people that act like putting a piece of rubbish in the bin for you is a huge deal. But you didn't ask to be sick, you aren't lazy there are just some things that you can't do. Some times leaning down to get that thing you dropped will leave you in pain or carrying in the shopping bags will leave you in a sling.<br />
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Here is a shocking statistic about how many people with a chronic illness feel like a burden:<br />
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhpbvtFbYF3_lUPSFIlszUG0ldsia8jlfZ-M2OXnWRYFcOHFEQmgqjoJNlggiUgRT4twfuaOCQaH5uvJ585uaIj6FIgtU1-rT1j-pqyO6fOix9Fk6VytxDLyvU_6FQf3_JxmdJbciA17zw/s1600/Burden.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhpbvtFbYF3_lUPSFIlszUG0ldsia8jlfZ-M2OXnWRYFcOHFEQmgqjoJNlggiUgRT4twfuaOCQaH5uvJ585uaIj6FIgtU1-rT1j-pqyO6fOix9Fk6VytxDLyvU_6FQf3_JxmdJbciA17zw/s320/Burden.jpg" width="320" /></a></div>
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So if your chronically ill, remember your not a burden you just need help to get some things done.<br />
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Thank you so much for reading! I know this isn't my most eloquent writing but I wanted to touch on this subjectedsgirlhttp://www.blogger.com/profile/05670922214975559895noreply@blogger.com0tag:blogger.com,1999:blog-6144418337596366487.post-80905858472195772962015-10-16T08:59:00.000-07:002015-10-16T08:59:00.378-07:00Favourite QuotesI, as a writer absolutely love quotes so I thought it would be fun to share some of my favourite quotes with you. I also have a pinterest board with them on. If you would like to see more here is my pinterest: https://www.pinterest.com/rachaelthezebra/pins/<br />
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I hope that these quotes have inspired you. I was wondering would you like to see my favourite bible verses and quotes? If I have enough interest in that I will do that. Thanks so much for reading. Which quote is your favourite<br />
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****ALL RIGHTS GO TO THE ORIGINAL CREATOR- LINKS TO ALL ON MY PINTEREST****edsgirlhttp://www.blogger.com/profile/05670922214975559895noreply@blogger.com0tag:blogger.com,1999:blog-6144418337596366487.post-86159049765457562792015-10-09T09:02:00.000-07:002015-10-09T09:02:00.744-07:00Dysautonomia/POTS Awareness Month: What is Dysautonomia/POTS?This month is Dysautonomia/POTS Awareness Month and I wanted to do a post on what Dysautonomia is and try to explain it.<br />
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<h3>
<span style="font-size: large;">What is it?</span></h3>
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Here is a description I got off of the internet:<br />
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<b style="color: #222222; font-family: arial, sans-serif; font-size: 16px; line-height: 19px;">Dysautonomia</b><span style="background-color: white; color: #222222; font-family: arial, sans-serif; font-size: 16px; line-height: 19px;"> is a medical term utilized for a group of complex conditions that are caused by a malfunction of the autonomic nervous system (ANS). The ANS regulates all of the unconscious functions of the body, including the cardiovascular system, gastrointestinal system, metabolic system, and endocrine system.</span><br />
<span style="background-color: white; color: #222222; font-family: arial, sans-serif; font-size: 16px; line-height: 19px;"><br /></span>
<span style="background-color: white; color: #222222; font-family: arial, sans-serif; font-size: 16px; line-height: 19px;">Thats pretty much a fancy way of saying that the things that your body is meant to do without you thinking about mine has forgotten how to do it.</span><br />
<span style="background-color: white; color: #222222; font-family: arial, sans-serif; font-size: 16px; line-height: 19px;"><br /></span>
<span style="background-color: white; color: #222222; font-family: arial, sans-serif; font-size: 16px; line-height: 19px;"><br /></span>
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<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjoQOnagzgtRUY9ixrwig2DJFfPhglROAap2-lGIsAqMYCMHtz7UR5MpuvjnNa8wTxNcBtIEBrFyzG9R6I9ig5piMkwfH-jd4rjWHiXm_fWfdjPGVeR5HWqGyvYLtyy_wtEQ9NuMZLiRUU/s1600/POTS.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjoQOnagzgtRUY9ixrwig2DJFfPhglROAap2-lGIsAqMYCMHtz7UR5MpuvjnNa8wTxNcBtIEBrFyzG9R6I9ig5piMkwfH-jd4rjWHiXm_fWfdjPGVeR5HWqGyvYLtyy_wtEQ9NuMZLiRUU/s320/POTS.jpg" width="250" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">A graphic that explains it well: If you can't read it here is the link: https://www.pinterest.com/pin/304978205995069083/</td></tr>
</tbody></table>
<h3>
<span style="font-size: large;">So... What are the symptoms?</span></h3>
<h4>
<div style="color: #333333; font-family: Georgia, Baskerville, Palatino, 'Palatino Linotype', 'Book Antiqua', 'Times New Roman', serif; font-size: 13px; font-weight: normal; line-height: 19.512001037597656px; margin-bottom: 0.8em; margin-top: 0.4em; padding: 0px;">
<span style="font-weight: 700;"><a href="http://www.dynainc.org/dysautonomia/symptoms" target="_blank">Symptoms of dysautonomia may include:</a></span></div>
<table align="center" border="0" cellpadding="0" cellspacing="0" style="border-collapse: collapse; border-color: rgb(238, 238, 238); border-spacing: 0px; border-width: 0px; color: #333333; font-family: Georgia, Baskerville, Palatino, 'Palatino Linotype', 'Book Antiqua', 'Times New Roman', serif; font-size: 13px; line-height: 19.512001037597656px; margin: 0px 0px 10px; padding: 0px; vertical-align: middle; width: 537px;"><tbody style="border-collapse: collapse; border-spacing: 0px; border-top-color: rgb(204, 204, 204); border-top-style: solid; border-width: 0px; margin: 0px; padding: 0px;">
<tr style="border-collapse: collapse; border-spacing: 0px; border-width: 0px; margin: 0px; padding: 0px;"><td align="center" style="border-bottom-style: none; border-collapse: collapse; border-spacing: 0px; border-width: 0px; margin: 0px; padding: 0.375em 0.5em; vertical-align: middle;" width="50%"><div style="margin-bottom: 0.8em; margin-top: 0.4em; padding: 0px;">
<span style="font-weight: 700;">Orthostatic Intolerance</span><br />
(inability to remain upright)<br />
<span style="font-weight: 700;">Dizziness<br />Syncope </span>(fainting/near fainting)<span style="font-weight: 700;"><br />Tachycardia </span>(fast heart rate)<span style="font-weight: 700;"><br />Bradycardia </span>(slow heart rate)<span style="font-weight: 700;"><br />Palpitations<br />Chest Discomfort<br />Low Blood Pressure<br />Lightheadedness<br />Gastrointestinal Problems<br />Excessive Fatigue<br />Exercise Intolerance<br />Nausea<br />Visual Disturbances<br />Weakness </span></div>
</td><td align="center" style="border-bottom-style: none; border-collapse: collapse; border-spacing: 0px; border-width: 0px; margin: 0px; padding: 0.375em 0.5em; vertical-align: middle;"><span style="font-weight: 700;">Shortness of Breath<br />Mood Swings<br />Anxiety<br />Vertigo<br />Migraines<br />Tremulousness<br />Noise/light sensitivity<br />Insomnia<br />Frequent Urination<br />Temperature Regulation Problems<br />Brain fog/forgetfulness<br />Inability to concentrate<br />Difficulty with recall<br />Appetite Disturbance<br />Hypersensitivity to sensory stimulation<br />Fatigue</span></td></tr>
</tbody></table>
</h4>
<h4>
<span style="font-size: large;">So which ones affect me?</span></h4>
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<ul>
<li>Orthostatic Intolerance</li>
<li>Dizzinenss</li>
<li>Fatigue</li>
<li>Syncope</li>
<li>Inability to concentrate</li>
<li>Difficulty with recall (which is SO fun for exams)</li>
<li>Appetite Disturbance</li>
<li>Hypersensitivity to sensory stimulation</li>
<li>Shortness of Breath</li>
<li>Vertigo</li>
<li>Migranes</li>
<li>Noise/Light Sensitivity</li>
<li>Insomnia</li>
<li>Temperature Regulation Problems</li>
<li>Brain fog/forgetfulness</li>
<li>Tachycardia</li>
<li>Bradycardia</li>
<li>Palpitations</li>
<li>Chest Discomfort</li>
<li>Low Blood Pressure</li>
<li>Lightheadedness</li>
<li>Gastrointestinal Problems</li>
<li>Nausea</li>
<li>Visual Disturbances</li>
<li>Weakness</li>
</ul>
<h4>
<span style="font-size: large;">So what is the treatment?</span></h4>
<div>
There is no treatment that works for everyone, there is no cure and management is a tricky thing to get right. Some people are very mildly affected and others are bed bound. There are some medications that can help, I take Florinef to help with my POTS- it helps a bit but also has some nasty side effects. People with POTS need to drink a lot of water and electrolyte drinks as well as eat a lot of salt. These too things help to increase the fluid volume which helps to improve blood flow. </div>
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<span style="font-size: large;"><br /></span></div>
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There are also several things that can make POTS worse here is what happens to a Dyautonomia patient has a shower:</div>
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As you can see Dysautonomia affects me on a daily basis. There is no real treatment or awareness and this can strike at anytime in your life. Sometimes other conditions such as Ehlers Danlos Syndrome can cause it but a perfectly healthy person can get it too. Most of the time teens will get POTS but there is no real research into why it hits teens.</div>
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Thank you so much for reading please help to raise awareness by sharing this post.</div>
edsgirlhttp://www.blogger.com/profile/05670922214975559895noreply@blogger.com0tag:blogger.com,1999:blog-6144418337596366487.post-16881724966251397142015-10-02T12:35:00.000-07:002015-10-02T12:37:00.267-07:00"But you don't look sick"- Comments I get as a person with a invisible illness/disabilityThis week is invisible illness awareness week<br />
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As most of you know I have an invisible illness called Ehlers Danlos Syndrome. I use a wheelchair but only part time. Some days I use crutches or a cane and some days I can walk a little bit normally. On those days there is nothing to indicate that I am sick. My favourite hobby is makeup so most days when I go out I have my makeup done. By looking at me I look like a normal 18 year old- but my insides tell another story, the ligaments and tendons around my joints are literally falling apButart, my stomach is paralysed as is my bowel, I have an ACE to manually empty my bowel, my bladder has failed so I self catheter, my heart is damaged and that is just touching the surface of my health problems. I am not telling you this for you to feel sorry for me but so you know that just because you can't see my health problems doesn't mean they aren't there. You can't make all this up! The tests don't lie.<br />
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I get so many comments about my looks and my health. I know people don't mean to upset me but comments such as "You don't look sick" just invalidate my issues.<br />
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Please remember that just because you can't see something doesn't mean it isn't there. And be there for your friend and remember to just say "You look great today but I know you probably aren't feeling as good as you look" or something along those lines not "You don't look sick" or anything to that effect<br />
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<br />edsgirlhttp://www.blogger.com/profile/05670922214975559895noreply@blogger.com0tag:blogger.com,1999:blog-6144418337596366487.post-85226024701102121082015-09-24T23:03:00.000-07:002015-09-24T23:03:12.773-07:00Why I use a wheelchair when I can walk. A question I get a lot is why I use a wheelchair if I am able to work. If you haven't had much contact with wheelchairs when you see someone in a wheelchair you think that if someone is in a wheelchair they MUST be paralysed- WRONG.<br />
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That mindset is how this meme started getting circulated:<br />
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiJkbUa9V5Q0T6vWFn7FWtRU5cdOYCGYTXtIfzZNapLbqxW89ErSmGcmRcsLy8E9Clndi29va6IBFj4EzPmmdvJXLB_8SDlcJJhDz162EgFgzGL9K8jkbt-Hfh8bnpYZWOZ2odkEiS2qsU/s1600/Disability+Meme.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiJkbUa9V5Q0T6vWFn7FWtRU5cdOYCGYTXtIfzZNapLbqxW89ErSmGcmRcsLy8E9Clndi29va6IBFj4EzPmmdvJXLB_8SDlcJJhDz162EgFgzGL9K8jkbt-Hfh8bnpYZWOZ2odkEiS2qsU/s320/Disability+Meme.jpg" width="240" /></a></div>
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The person in this meme could have very easily been mine. It isn't rare that I will stand up if I can't reach something on a high shelf.<br />
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The reasons I use a wheelchair are:<br />
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1. Dislocations:<br />
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Because of the EDS my joints dislocate constantly and I am unable to walk long distances without dislocating my hips. There are times where I can walk short distances and there are times I can't even walk to the bathroom. Every day is different which means the amount of time I use my chair is different.<br />
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2. Seizures:<br />
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I have recently started to have seizures so for my own safety when I am out I use the wheelchair as dislocating joints and hitting the floor doesn't help.<br />
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3. Drop Attacks:<br />
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I have drop attacks so for the same reason as the seizures I use a wheelchair when I am out.<br />
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4. Fatigue:<br />
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I have really bad fatigue caused by EDS and chronic fatigue and most days walking takes more spoons than I have so I use the chair to help preserve my energy.<br />
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5. Muscle Weakness<br />
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I have muscle weakness and the more I walk the worst the muscle weakness gets and the more likely I am to fall. So it is again a safety issue.<br />
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6. Chronic Pain<br />
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I am in constant pain and walking takes that pain from a 4 until a 9 so that I am not crying by the end of my outing I use the chair.<br />
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As you can see there are many more reasons to use wheelchairs than just paralysis. I have come to the conclusion that so I can enjoy myself sometimes I use the wheelchair. It was a hard thing to accept but since I have I have been able to get out more.<br />
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Eventually I will be in a wheelchair full time and I want to enjoy the fact that I am not glued to my seat and stand up if I want to reach someone. You can't tell if someone is paralysed just from looking at them. Don't judge a book by its coveredsgirlhttp://www.blogger.com/profile/05670922214975559895noreply@blogger.com1tag:blogger.com,1999:blog-6144418337596366487.post-64320038146948981502015-09-18T09:00:00.000-07:002015-09-14T09:12:46.854-07:00Uplifting Music: Fight Song PlaylistI find that when I am really struggling music can help uplift me. I have some favourite christian songs too but I respect that not everyone is christian so you can skip that bit if you don't want to but I still highly suggest you listen to them :)<br />
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Colbie Caillat- Try<br />
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Favourite Lyrics: </div>
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<span style="background-color: #fafafc; color: #4d4d4d; font-family: 'Helvetica Neue', Helvetica, sans-serif, Arial; font-size: 15px; line-height: 21px;">Wait a second </span></div>
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<span style="background-color: #fafafc; color: #4d4d4d; font-family: 'Helvetica Neue', Helvetica, sans-serif, Arial; font-size: 15px; line-height: 21px;">Why</span><span style="background-color: #fafafc; color: #4d4d4d; font-family: 'Helvetica Neue', Helvetica, sans-serif, Arial; font-size: 15px; line-height: 21px;"> should you care what they think of you</span></div>
<span style="background-color: #fafafc; color: #4d4d4d; font-family: 'Helvetica Neue', Helvetica, sans-serif, Arial; font-size: 15px; line-height: 21px;">When you’re all alone</span><br />
<span style="background-color: #fafafc; color: #4d4d4d; font-family: 'Helvetica Neue', Helvetica, sans-serif, Arial; font-size: 15px; line-height: 21px;">By yourself, do you like you</span><br />
<span style="background-color: #fafafc; color: #4d4d4d; font-family: 'Helvetica Neue', Helvetica, sans-serif, Arial; font-size: 15px; line-height: 21px;">Do you like you</span><br />
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<span style="color: #4d4d4d; font-family: Times, Times New Roman, serif;"><span style="background-color: #fafafc; line-height: 21px;">Rachael Platten Fight Song:</span></span><br />
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<span style="color: #4d4d4d; font-family: Times, Times New Roman, serif;"><span style="background-color: #fafafc; line-height: 21px;">Favourite Lyrics:</span></span><br />
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<span style="background-color: white;"><span style="font-family: Verdana, Arial; font-size: 13px; line-height: 19px; text-align: center;">This is my fight song</span><br style="box-sizing: border-box; font-family: Verdana, Arial; font-size: 13px; line-height: 19px; text-align: center;" /><span style="font-family: Verdana, Arial; font-size: 13px; line-height: 19px; text-align: center;">Take back my life song</span><br style="box-sizing: border-box; font-family: Verdana, Arial; font-size: 13px; line-height: 19px; text-align: center;" /><span style="font-family: Verdana, Arial; font-size: 13px; line-height: 19px; text-align: center;">Prove I'm alright song</span><br style="box-sizing: border-box; font-family: Verdana, Arial; font-size: 13px; line-height: 19px; text-align: center;" /><span style="font-family: Verdana, Arial; font-size: 13px; line-height: 19px; text-align: center;">My power's turned on</span><br style="box-sizing: border-box; font-family: Verdana, Arial; font-size: 13px; line-height: 19px; text-align: center;" /><span style="font-family: Verdana, Arial; font-size: 13px; line-height: 19px; text-align: center;">Starting right now I'll be strong</span><br style="box-sizing: border-box; font-family: Verdana, Arial; font-size: 13px; line-height: 19px; text-align: center;" /><span style="font-family: Verdana, Arial; font-size: 13px; line-height: 19px; text-align: center;">I'll play my fight song</span><br style="box-sizing: border-box; font-family: Verdana, Arial; font-size: 13px; line-height: 19px; text-align: center;" /><span style="font-family: Verdana, Arial; font-size: 13px; line-height: 19px; text-align: center;">And I don't really care if nobody else believes</span><br style="box-sizing: border-box; font-family: Verdana, Arial; font-size: 13px; line-height: 19px; text-align: center;" /><span style="font-family: Verdana, Arial; font-size: 13px; line-height: 19px; text-align: center;">'Cause I've still got a lot of fight left in me</span><br style="box-sizing: border-box; font-family: Verdana, Arial; font-size: 13px; line-height: 19px; text-align: center;" /><br style="box-sizing: border-box; font-family: Verdana, Arial; font-size: 13px; line-height: 19px; text-align: center;" /><span style="font-family: Verdana, Arial; font-size: 13px; line-height: 19px; text-align: center;">Losing friends and I'm chasing sleep</span><br style="box-sizing: border-box; font-family: Verdana, Arial; font-size: 13px; line-height: 19px; text-align: center;" /><span style="font-family: Verdana, Arial; font-size: 13px; line-height: 19px; text-align: center;">Everybody's worried about me</span><br style="box-sizing: border-box; font-family: Verdana, Arial; font-size: 13px; line-height: 19px; text-align: center;" /><span style="font-family: Verdana, Arial; font-size: 13px; line-height: 19px; text-align: center;">In too deep</span><br style="box-sizing: border-box; font-family: Verdana, Arial; font-size: 13px; line-height: 19px; text-align: center;" /><span style="font-family: Verdana, Arial; font-size: 13px; line-height: 19px; text-align: center;">Say I'm in too deep (in too deep)</span></span><br />
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Katy Perry- Roar<br />
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Favourite Lyrics:</div>
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<span style="background-color: white; font-family: proxnov-reg, arial, sans-serif; line-height: 16px; text-align: left;">I got the eye of the tiger, a fighter</span></div>
<span style="background-color: white; font-family: proxnov-reg, arial, sans-serif; line-height: 16px; text-align: left;">Dancing through the fire</span><br />
<span style="background-color: white; font-family: proxnov-reg, arial, sans-serif; line-height: 16px; text-align: left;">'Cause I am the champion, and you're gonna hear me roar</span><br />
<span style="background-color: white; font-family: proxnov-reg, arial, sans-serif; line-height: 16px; text-align: left;">Louder, louder than a lion</span><br />
<span style="background-color: white; font-family: proxnov-reg, arial, sans-serif; line-height: 16px; text-align: left;">'Cause I am a champion, and you're gonna hear me roar!</span><span style="background-color: white; box-sizing: border-box; font-family: proxnov-reg, arial, sans-serif; line-height: 16px; text-align: left;"><br style="box-sizing: border-box;" /></span><br />
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Katy Perry- Firework<br />
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Favourite Lyrics:</div>
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<div class="verse" style="background-color: white; box-sizing: border-box; font-family: proxnov-reg, arial, sans-serif; line-height: 16px;">
You don't have to feel<br />
Like a waste of space<br />
You're original<br />
Cannot be replaced</div>
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If you only knew<br />
What the future holds<br />
After a hurricane<br />
Comes a rainbow</div>
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Maybe the reason why<br />
All the doors are closed<br />
So you could open one<br />
That leads you to the perfect road</div>
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Sara Bareilles- Brave<br />
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Favourite Lyrics:</div>
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<span style="background-color: white;"><span style="font-family: Verdana, Arial; font-size: 13px; line-height: 19px; text-align: center;">Maybe there's a way out of the cage where you live</span><br style="box-sizing: border-box; font-family: Verdana, Arial; font-size: 13px; line-height: 19px; text-align: center;" /><span style="font-family: Verdana, Arial; font-size: 13px; line-height: 19px; text-align: center;">Maybe one of these days you can let the light in</span><br style="box-sizing: border-box; font-family: Verdana, Arial; font-size: 13px; line-height: 19px; text-align: center;" /><span style="font-family: Verdana, Arial; font-size: 13px; line-height: 19px; text-align: center;">Show me how big your brave is</span></span></div>
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Hunter Hayes- Invisible<br />
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Favourite Lyrics:</div>
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<span style="background-color: #ccccdd; font-family: Verdana, Arial; font-size: 13px; line-height: 19px; text-align: center;">Trust the one</span></div>
<span style="background-color: white;"><span style="font-family: Verdana, Arial; font-size: 13px; line-height: 19px; text-align: center;">Who's been where you are wishing all it was</span><br style="box-sizing: border-box; font-family: Verdana, Arial; font-size: 13px; line-height: 19px; text-align: center;" /><span style="font-family: Verdana, Arial; font-size: 13px; line-height: 19px; text-align: center;">Was sticks and stones</span><br style="box-sizing: border-box; font-family: Verdana, Arial; font-size: 13px; line-height: 19px; text-align: center;" /><span style="font-family: Verdana, Arial; font-size: 13px; line-height: 19px; text-align: center;">Those words cut deep but they don't mean you're all alone</span><br style="box-sizing: border-box; font-family: Verdana, Arial; font-size: 13px; line-height: 19px; text-align: center;" /><span style="font-family: Verdana, Arial; font-size: 13px; line-height: 19px; text-align: center;">And you're not invisible</span><br style="box-sizing: border-box; font-family: Verdana, Arial; font-size: 13px; line-height: 19px; text-align: center;" /><span style="font-family: Verdana, Arial; font-size: 13px; line-height: 19px; text-align: center;">Hear me out,</span><br style="box-sizing: border-box; font-family: Verdana, Arial; font-size: 13px; line-height: 19px; text-align: center;" /><span style="font-family: Verdana, Arial; font-size: 13px; line-height: 19px; text-align: center;">There's so much more to life than what you're feeling now</span><br style="box-sizing: border-box; font-family: Verdana, Arial; font-size: 13px; line-height: 19px; text-align: center;" /><span style="font-family: Verdana, Arial; font-size: 13px; line-height: 19px; text-align: center;">Someday you'll look back on all these days</span><br style="box-sizing: border-box; font-family: Verdana, Arial; font-size: 13px; line-height: 19px; text-align: center;" /><span style="font-family: Verdana, Arial; font-size: 13px; line-height: 19px; text-align: center;">And all this pain is gonna be invisible</span><br style="box-sizing: border-box; font-family: Verdana, Arial; font-size: 13px; line-height: 19px; text-align: center;" /><span style="font-family: Verdana, Arial; font-size: 13px; line-height: 19px; text-align: center;">Oh, invisible</span></span><br />
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So now for the christian songs that I love<br />
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Britt Nicole- Have Your Way<br />
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Favourite Lyrics<br />
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<div class="verse" style="background-color: white; box-sizing: border-box; font-family: proxnov-reg, arial, sans-serif; line-height: 16px;">
So I'll stop searching for the answers<br />
I'll stop praying for an escape<br />
And I'll trust You God with where I am<br />
And believe that You will have Your way<br />
Just have Your way, just have Your way</div>
<div class="verse" style="background-color: white; box-sizing: border-box; font-family: proxnov-reg, arial, sans-serif; line-height: 16px;">
Even if my dreams have died<br />
And even if I don't survive<br />
I'll still worship You with all my life<br />
My life, yeah</div>
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<span style="background-color: white; box-sizing: border-box; font-family: proxnov-reg, arial, sans-serif; line-height: 16px;"><br style="box-sizing: border-box;" /></span>
Britt Nicole- When She Cries<br />
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Favourite Lyrics:</div>
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<span style="background-color: white;"><span style="font-family: Verdana, Arial; font-size: 13px; line-height: 19px; text-align: center;">This is the dark before the dawn</span><br style="box-sizing: border-box; font-family: Verdana, Arial; font-size: 13px; line-height: 19px; text-align: center;" /><span style="font-family: Verdana, Arial; font-size: 13px; line-height: 19px; text-align: center;">The storm before the peace</span><br style="box-sizing: border-box; font-family: Verdana, Arial; font-size: 13px; line-height: 19px; text-align: center;" /><span style="font-family: Verdana, Arial; font-size: 13px; line-height: 19px; text-align: center;">Don't be afraid 'cause seasons change and</span><br style="box-sizing: border-box; font-family: Verdana, Arial; font-size: 13px; line-height: 19px; text-align: center;" /><span style="font-family: Verdana, Arial; font-size: 13px; line-height: 19px; text-align: center;">God is watching over you</span><br style="box-sizing: border-box; font-family: Verdana, Arial; font-size: 13px; line-height: 19px; text-align: center;" /><span style="font-family: Verdana, Arial; font-size: 13px; line-height: 19px; text-align: center;">He hears you</span></span></div>
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Mandisa- He is With You<br />
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Favourite Lyrics:<br />
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<span style="background-color: white;"><span style="font-family: Verdana, Arial; font-size: 13px; line-height: 19px; text-align: center;">He is with you in the ICU</span><br style="box-sizing: border-box; font-family: Verdana, Arial; font-size: 13px; line-height: 19px; text-align: center;" /><span style="font-family: Verdana, Arial; font-size: 13px; line-height: 19px; text-align: center;">When the doctors don't know what to do</span><br style="box-sizing: border-box; font-family: Verdana, Arial; font-size: 13px; line-height: 19px; text-align: center;" /><span style="font-family: Verdana, Arial; font-size: 13px; line-height: 19px; text-align: center;">And it scares you to the core</span><br style="box-sizing: border-box; font-family: Verdana, Arial; font-size: 13px; line-height: 19px; text-align: center;" /><span style="font-family: Verdana, Arial; font-size: 13px; line-height: 19px; text-align: center;">He is with you</span><br style="box-sizing: border-box; font-family: Verdana, Arial; font-size: 13px; line-height: 19px; text-align: center;" /><br style="box-sizing: border-box; font-family: Verdana, Arial; font-size: 13px; line-height: 19px; text-align: center;" /><span style="font-family: Verdana, Arial; font-size: 13px; line-height: 19px; text-align: center;">We may weep for a time</span><br style="box-sizing: border-box; font-family: Verdana, Arial; font-size: 13px; line-height: 19px; text-align: center;" /><span style="font-family: Verdana, Arial; font-size: 13px; line-height: 19px; text-align: center;">But joy will come in the morning</span></span><br />
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Mandisa- Stronger<br />
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<iframe allowfullscreen="" class="YOUTUBE-iframe-video" data-thumbnail-src="https://i.ytimg.com/vi/emgv-VRtMEU/0.jpg" frameborder="0" height="266" src="https://www.youtube.com/embed/emgv-VRtMEU?feature=player_embedded" width="320"></iframe></div>
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Favourite Lyrics:</div>
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<span style="background-color: white;"><span style="font-family: Verdana, Arial; font-size: 13px; line-height: 19px; text-align: center;">When the waves are taking you under</span><br style="box-sizing: border-box; font-family: Verdana, Arial; font-size: 13px; line-height: 19px; text-align: center;" /><span style="font-family: Verdana, Arial; font-size: 13px; line-height: 19px; text-align: center;">Hold on just a little bit longer</span><br style="box-sizing: border-box; font-family: Verdana, Arial; font-size: 13px; line-height: 19px; text-align: center;" /><span style="font-family: Verdana, Arial; font-size: 13px; line-height: 19px; text-align: center;">He knows that this is gonna make you stronger, stronger</span><br style="box-sizing: border-box; font-family: Verdana, Arial; font-size: 13px; line-height: 19px; text-align: center;" /><span style="font-family: Verdana, Arial; font-size: 13px; line-height: 19px; text-align: center;">The pain ain't gonna last forever</span><br style="box-sizing: border-box; font-family: Verdana, Arial; font-size: 13px; line-height: 19px; text-align: center;" /><span style="font-family: Verdana, Arial; font-size: 13px; line-height: 19px; text-align: center;">And things can only get better</span><br style="box-sizing: border-box; font-family: Verdana, Arial; font-size: 13px; line-height: 19px; text-align: center;" /><span style="font-family: Verdana, Arial; font-size: 13px; line-height: 19px; text-align: center;">Believe me</span><br style="box-sizing: border-box; font-family: Verdana, Arial; font-size: 13px; line-height: 19px; text-align: center;" /><span style="font-family: Verdana, Arial; font-size: 13px; line-height: 19px; text-align: center;">This is gonna make you stronger</span></span></div>
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Jamie Grace- Fighter<br />
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<iframe allowfullscreen="" class="YOUTUBE-iframe-video" data-thumbnail-src="https://i.ytimg.com/vi/cBy6UJTdvmo/0.jpg" frameborder="0" height="266" src="https://www.youtube.com/embed/cBy6UJTdvmo?feature=player_embedded" width="320"></iframe></div>
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Favourite Lyrics:</div>
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<span style="background-color: white; font-family: Verdana, Arial; font-size: 13px; line-height: 19px; text-align: center;">But she knows the name of every nurse she sees</span></div>
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<span style="background-color: white;"><span style="font-family: Verdana, Arial; font-size: 13px; line-height: 19px; text-align: center;">She's a fighter, got that fire</span><br style="box-sizing: border-box; font-family: Verdana, Arial; font-size: 13px; line-height: 19px; text-align: center;" /><span style="font-family: Verdana, Arial; font-size: 13px; line-height: 19px; text-align: center;">When they thought she'd fade away</span><br style="box-sizing: border-box; font-family: Verdana, Arial; font-size: 13px; line-height: 19px; text-align: center;" /><span style="font-family: Verdana, Arial; font-size: 13px; line-height: 19px; text-align: center;">Throws a fist up, keeps her head up</span><br style="box-sizing: border-box; font-family: Verdana, Arial; font-size: 13px; line-height: 19px; text-align: center;" /><span style="font-family: Verdana, Arial; font-size: 13px; line-height: 19px; text-align: center;">Feelin' stronger everyday</span><br style="box-sizing: border-box; font-family: Verdana, Arial; font-size: 13px; line-height: 19px; text-align: center;" /><span style="font-family: Verdana, Arial; font-size: 13px; line-height: 19px; text-align: center;">When she gets down on her knees,</span><br style="box-sizing: border-box; font-family: Verdana, Arial; font-size: 13px; line-height: 19px; text-align: center;" /><span style="font-family: Verdana, Arial; font-size: 13px; line-height: 19px; text-align: center;">She finds the courage to believe</span><br style="box-sizing: border-box; font-family: Verdana, Arial; font-size: 13px; line-height: 19px; text-align: center;" /><span style="font-family: Verdana, Arial; font-size: 13px; line-height: 19px; text-align: center;">She's a fighter, she's a figher</span><br style="box-sizing: border-box; font-family: Verdana, Arial; font-size: 13px; line-height: 19px; text-align: center;" /><span style="font-family: Verdana, Arial; font-size: 13px; line-height: 19px; text-align: center;">Who inspires, yeah</span></span></div>
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<span style="background-color: white;"><span style="font-family: Verdana, Arial; font-size: 13px; line-height: 19px; text-align: center;">Thank you for reading I hope that this helped you and you were able to add some new music to your playlist!</span></span></div>
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****All rights go to the singer and record company****<br />
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edsgirlhttp://www.blogger.com/profile/05670922214975559895noreply@blogger.com0tag:blogger.com,1999:blog-6144418337596366487.post-31921207735639495642015-08-24T02:38:00.001-07:002015-08-24T02:38:09.046-07:00Hope ToysA few weeks ago I was trying to find a very special gift for a very special girls 6th birthday. Zoe has EDS like I do and me and her mum have become very close. We visit them when we can as we live in the same state. I was looking online and found <a href="https://www.facebook.com/HopeToysAustralia?fref=ts" target="_blank">Hope Toy</a>s I really loved all the photos on her page so I emailed her. The prices are very reasonable and she worked with me to create something that was very similar to Zoe. She had never made the braces that Zoe and I wear but she worked very hard to make it as realistic as possible and did a fantastic job.<br />
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Here is Zoe's doll:<br />
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<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiuOPe5gInEiNB0Q8SxwePNFKy68MqHH_KnjgCgRWQRkV_1iOq-xbxLnvTzT7mRmlovqi37B4PtTxG1C9fIn8Yz0nD6VYTqpC_O-2JIaivGEHK426kB9_SH6k82HZykLLDXTjbVWLdZLmM/s1600/Zoes+Doll.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiuOPe5gInEiNB0Q8SxwePNFKy68MqHH_KnjgCgRWQRkV_1iOq-xbxLnvTzT7mRmlovqi37B4PtTxG1C9fIn8Yz0nD6VYTqpC_O-2JIaivGEHK426kB9_SH6k82HZykLLDXTjbVWLdZLmM/s320/Zoes+Doll.jpg" width="240" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Zoe's Doll for Zoe's privacy I have not added a photo of Zoe but it does look like her. I also have not undone the box because Zoe hasn't received it yet.</td></tr>
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She then kindly offered to make me one- which was so sweet of her. She also is going to help us to raise EDS awareness. This business is amazing. She has not asked me to make this blog post but I want to get her some more business so if you, your child or someone you know has a disability I highly recommend you looking into Hope Toys.<br />
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Here is my doll and wheelchair:<br />
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<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEj_8K-iWcmUHHJst5e3L4r-zdEHHDMFBsEQvVFRZZ7cV2F8_WyJ4YrC9YIPwXMc76GgPcqUx1rBrfEUrTnXifS0v0PP9iUGn7-1pYbn_yTaAWFrm431gn2HHQkAucaa9FJMTAzwQULxh54/s1600/Blanket.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="240" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEj_8K-iWcmUHHJst5e3L4r-zdEHHDMFBsEQvVFRZZ7cV2F8_WyJ4YrC9YIPwXMc76GgPcqUx1rBrfEUrTnXifS0v0PP9iUGn7-1pYbn_yTaAWFrm431gn2HHQkAucaa9FJMTAzwQULxh54/s320/Blanket.jpg" width="320" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">I absolutely love this blanket. The top says "Rachael's Journey" and the bottom says EDS</td></tr>
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<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjwgFqKW1iTdTaChr_d7TnL6ec2QxgmpcFzNptIAYDoPshEnAh8wZxHV4C30OVPlZQqLlO6O1Jp7WrzVy6oGNeswIuoLuUYVW0aORF2jxAhv396WmJK1Nmy-MQqHGcuvI5CGVGMEUvRopQ/s1600/Doll.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="240" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjwgFqKW1iTdTaChr_d7TnL6ec2QxgmpcFzNptIAYDoPshEnAh8wZxHV4C30OVPlZQqLlO6O1Jp7WrzVy6oGNeswIuoLuUYVW0aORF2jxAhv396WmJK1Nmy-MQqHGcuvI5CGVGMEUvRopQ/s320/Doll.jpg" width="320" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">The hoodie says the same as the blanket. I think that the doll looks like me </td></tr>
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<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhs7yzPqa9ofsaBj1vxgsVrneBRwZdMq-idNI47vnccb48IwdmDN-NlTHVM5BJqeynKzkvK1JKnyevpkm-ZGnvaRhL8FlrA1TSs9VQORSsXTgm3KiHb0s2OKMeK4ZuPUcqv8F7f3fGCN3o/s1600/Wheelchair.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhs7yzPqa9ofsaBj1vxgsVrneBRwZdMq-idNI47vnccb48IwdmDN-NlTHVM5BJqeynKzkvK1JKnyevpkm-ZGnvaRhL8FlrA1TSs9VQORSsXTgm3KiHb0s2OKMeK4ZuPUcqv8F7f3fGCN3o/s320/Wheelchair.jpg" width="240" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">The wheelchair</td></tr>
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<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEggB9HlJAl8IX9t08k9fRvzh2i2Kcd_F1oApuCaRBSoXBhO8VT6FxzqZeHMQC1cRC6wL7iCVnLAnhBjrb86KXhQ-yGT9cacfbnQrKbvYBCVB2KezxeXFOcA5WGbzKr14u_IY6X3q3C1bP8/s1600/Back+of+Wheelchair.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEggB9HlJAl8IX9t08k9fRvzh2i2Kcd_F1oApuCaRBSoXBhO8VT6FxzqZeHMQC1cRC6wL7iCVnLAnhBjrb86KXhQ-yGT9cacfbnQrKbvYBCVB2KezxeXFOcA5WGbzKr14u_IY6X3q3C1bP8/s320/Back+of+Wheelchair.jpg" width="240" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">The back of the wheelchair says Rachael's Journey and EDS</td></tr>
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Everything is so well made and she is very responsive to messages. Please go and check her out and if you have any questions please email her. She is doing an amazing job at raising awareness of disabilities and helping children (and adults ;) ) feel more 'normal' whatever that word means!<br />
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Sorry I haven't been around I am having a lot of medical issues but I plan to blog more soon<br />
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<br />edsgirlhttp://www.blogger.com/profile/05670922214975559895noreply@blogger.com0tag:blogger.com,1999:blog-6144418337596366487.post-3483826598742399682015-05-21T09:54:00.000-07:002015-05-21T09:54:00.698-07:00Ehlers Danlos Syndrome Awareness Month- Fact 37, 38, 39<div class="separator" style="clear: both; text-align: left;">
All the credit for these graphics goes to the Invisible Zebra Facebook page. Please go and like her page and let her know that I sent you.</div>
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Fact 37:</div>
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I would really love more research on EDS. It would be so fantastic to know before the baby is born or straight after so you can prepare and deal with it instead of being a huge shock and not being diagnosed for years!</div>
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhvb908pig1oI_LCLWbatpC5aQK7iVnhTY6_h1ejR9taqqgSy04beN7ms7_gLCNMu0OPZHooAU2dmPz1ORF0XMJEj7f1lEIj8AVPq1U8EMuCudxcm6n3M26x4MkBEfc1MkjoNErI_y21ZA/s1600/Fact+37.png" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhvb908pig1oI_LCLWbatpC5aQK7iVnhTY6_h1ejR9taqqgSy04beN7ms7_gLCNMu0OPZHooAU2dmPz1ORF0XMJEj7f1lEIj8AVPq1U8EMuCudxcm6n3M26x4MkBEfc1MkjoNErI_y21ZA/s320/Fact+37.png" width="294" /></a></div>
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Fact 3:<br />
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I tend to be able to sleep all day long but whenever I try to get to sleep at night it just doesn't work! It is incredibly frustrating!<br />
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgAygOV9Iw-5O3si64jTKBR06u2CLVt_TXF__iqBP6XPtVD8Z2uer1LTdPaUOm8t7djDVzs8YkJ6Y4W_LsU-kV37rKF8ZI0PcD02n3DDJ3qqU8rWnpNOpohR9O5GeZH3EdDAcQmnBcPSMI/s1600/Fact+38.png" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgAygOV9Iw-5O3si64jTKBR06u2CLVt_TXF__iqBP6XPtVD8Z2uer1LTdPaUOm8t7djDVzs8YkJ6Y4W_LsU-kV37rKF8ZI0PcD02n3DDJ3qqU8rWnpNOpohR9O5GeZH3EdDAcQmnBcPSMI/s320/Fact+38.png" width="294" /></a></div>
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Fact 39:<br />
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I have anxiety. I mean who wouldn't be anxious when there body is falling apart at the seams and you are in pain constantly. I find that counselling helps a little but it won't just disappear when the cause (the pain) is still there.<br />
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgMrH0shX1gLC5D9DHf2ITMrnGVhh-BF_gaXmfxV44tohi0foMDataOQ20W4HvAZ42Tvw2c7RmD5KSAYGy_Qsedzq8YOQ_IdZjQ8GLZk2RxRUMo8lqAsnkHfzlvLcPXhb4ebnOcqmgq8eo/s1600/Fact+39.png" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgMrH0shX1gLC5D9DHf2ITMrnGVhh-BF_gaXmfxV44tohi0foMDataOQ20W4HvAZ42Tvw2c7RmD5KSAYGy_Qsedzq8YOQ_IdZjQ8GLZk2RxRUMo8lqAsnkHfzlvLcPXhb4ebnOcqmgq8eo/s320/Fact+39.png" width="294" /></a></div>
Thanks for reading. Don't forget to like the Invisible Zebra Facebook Page and tell her I sent you. Check back tomorrow for another post! I hope you are learning something from these posts.edsgirlhttp://www.blogger.com/profile/05670922214975559895noreply@blogger.com0tag:blogger.com,1999:blog-6144418337596366487.post-53301381723483778382015-05-20T09:33:00.000-07:002015-05-20T09:33:00.602-07:00Ehlers Danlos Syndrome Awareness Month- Facts 34, 35, 36All credit for these graphics goes to the Invisible Zebra Facebook Page please go and like her page and tell her I sent you!<br />
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Fact 34:<br />
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I have many secondary conditions: I have Gastroparesis, Dysautonomia, Osteoarthritis, Chronic Constipation resulting in ACE, Chronic Fatigue Syndrome, Fibromyalgia, Carpal Tunnel Syndrome, Mitral Valve Prolapse, CRPS and probably something else I am forgetting. EDS isn't just dislocations and having crazy party tricks it affects your whole body and is serious and not something to be taken lately. We may look okay on the outside but if you turned us inside out you would see a different story.<br />
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhk9VatzxTkkFhQjctnCmNPr4ByknWuf5qO724IBcQSfLBJuYI6Pz4w4s1T9e-tNDOrnO5pDdyk0fXH5UQbGjyXFaWwltoHtuPI4YJ_k0GLoR03ZstaAeaPkP0XVXVmKeWjbmnUthrq69w/s1600/Fact+34.png" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhk9VatzxTkkFhQjctnCmNPr4ByknWuf5qO724IBcQSfLBJuYI6Pz4w4s1T9e-tNDOrnO5pDdyk0fXH5UQbGjyXFaWwltoHtuPI4YJ_k0GLoR03ZstaAeaPkP0XVXVmKeWjbmnUthrq69w/s320/Fact+34.png" width="294" /></a></div>
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Fact 35:<br />
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I have Dysautonomia and my autonomic nervous system has definitely been affected, I am on tablets with it. I was semi-comatose for 5 days and now we think that was because of Dysautonomia/POTS. Dysautonomia is not a nice condition but it is one of the many "siblings" of EDS.<br />
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Fact 36:<br />
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My mum had a very hard pregnancy with me. She was in hospital for more than 3 months. I worry about how my health will be affected by pregnancy because of the EDS.<br />
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Thank you for reading! Please check out the Invisible Zebra Facebook Page. And check back tomorrow for another postedsgirlhttp://www.blogger.com/profile/05670922214975559895noreply@blogger.com0tag:blogger.com,1999:blog-6144418337596366487.post-6877010013690558962015-05-19T09:22:00.000-07:002015-05-19T09:22:00.136-07:00Ehlers Danlos Syndrome Awareness Month- Fact 31, 32 and 33<div class="separator" style="clear: both; text-align: left;">
All credit for these graphics goes to the Invisible Zebra Facebook page please go and like her page and tell her that Rachael's Health Journey sent you!</div>
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Fact 31:</div>
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This happens to me so often!! Sometimes I end up really sick because I have pushed myself not realising how much I have over done it. This is one of the things that I struggle with the most.</div>
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Fact 32:<br />
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This happens to me as well (I am writing this at 12:18 am) I had a sleep study and they found that I never reached REM sleep which is when your body recovers and gets the energy you need for the day which is part of the reason I get so exhausted.<br />
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Fact 33:</div>
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This happened to me. As a 6 year old mum was told that I was either seeking attention or wanting drugs (what 6yr old understands drugs). I am lucky my mum is so supportive but sometimes I am accused of faking. I know people that have struggled for years to get diagnosed. It took me 9 years. It is depressing. You wonder if you are crazy etc as everyone else is saying it. But know that you know your body and you are not crazy!</div>
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Thank you for reading! Don't forget to check out the Invisible Zebra Facebook Page and come back tomorrow for another post</div>
<br />edsgirlhttp://www.blogger.com/profile/05670922214975559895noreply@blogger.com0tag:blogger.com,1999:blog-6144418337596366487.post-46996534517427146192015-05-17T09:10:00.000-07:002015-05-17T09:10:39.775-07:00Ehlers Danlos Syndrome Awareness Month- Apology NeededI just want to apologize for not doing a post every day like I wanted to I have missed 3 days and I feel really horrible. I went on holiday and I underestimated how sick I would be when I came home. I literally haven't moved from my bed since I got home so I haven't done a post. But that is the reality of EDS. You never know what its going to throw at you. Even if I have missed and few days I am proud of how much I have done. I will still be aiming to post everyday and I might even try to make up for what I missed. There will be an exciting post next week as I am doing a EDS meet up in Perth, Western Australia, so if you are in the area please contact me for details!<br />
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Thank you all for being so supportive!edsgirlhttp://www.blogger.com/profile/05670922214975559895noreply@blogger.com0tag:blogger.com,1999:blog-6144418337596366487.post-62056920155839112292015-05-14T10:19:00.000-07:002015-05-14T10:19:00.352-07:00Ehlers Danlos Syndrome Awareness Month- Fact 27, 28, 29 and 30<div class="separator" style="clear: both; text-align: left;">
All of the credit for these graphics goes to the Invisible Zebra Facebook page please go and like their page and tell them that I sent you.</div>
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Fact 27:</div>
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I have not had this problem, at least not diagnosed. I have many family members that have had this issue, even those who aren't officially diagnosed which makes me wonder.</div>
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Fact 28:</div>
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My mum had this problem and her pregnancy was very tough with me, partly because of this</div>
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Fact 29:</div>
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Family members have also had this issue but thank goodness I have not had this one yet!</div>
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Fact 30:<br />
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I have this issue and it is very painful. Now I use catheters and it has actually helped this problem<br />
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Thank you all for reading, sorry that my explanations for this were very short but I didn't have much experience so I couldn't offer much. I would be more than happy to let someone do a guest post on this blog if they have experience with this. If you would be interested email me at rachaelmr97@gmail.com</div>
edsgirlhttp://www.blogger.com/profile/05670922214975559895noreply@blogger.com0tag:blogger.com,1999:blog-6144418337596366487.post-15346387485864518892015-05-13T10:07:00.000-07:002015-05-13T10:07:00.737-07:00Ehlers Danlos Syndrome Awareness Month- Fact 24, 25 and 26<div class="separator" style="clear: both; text-align: left;">
The credit for these graphics belongs to the Invisible Zebra Facebook page please go and like it and tell them that I sent you</div>
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Fact 24:</div>
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I have headaches and migraines because of all of the issues listed and I know that 99.9% of my friends with EDS are in the same boat.</div>
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Fact 25:</div>
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I have very bad digestive problems. My oesophagus is too stretchy and it doesn't push my food down so I throw it up or have bad reflux and heartburn even with medication.</div>
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhOkflegYAvu1J28ROXt2X9PRK5fYRTDPQDcNSNnMl68esbUPvZx8zNCUZ-MR6kYbX0FC52WHWqSgZTmGRQ3DXUGARvEYktf-F0MQB0TODjYCO1jdiKhXTAV4UDGyAyA-jzm62Vg7LYBUU/s1600/Fact+25.png" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhOkflegYAvu1J28ROXt2X9PRK5fYRTDPQDcNSNnMl68esbUPvZx8zNCUZ-MR6kYbX0FC52WHWqSgZTmGRQ3DXUGARvEYktf-F0MQB0TODjYCO1jdiKhXTAV4UDGyAyA-jzm62Vg7LYBUU/s1600/Fact+25.png" height="320" width="294" /></a></div>
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Fact 26:</div>
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I had incredibly bad constipation, so bad that I had to have half of my bowel taken out and get an ACE even though it was very risky. My bowel was so close to rupturing so that was risky too so we took the risk and I am glad that we did. IBS is a sort of term that they just tell you without fully looking into it when in fact it could be other things such as EDS</div>
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhWLeuPV0d_etvE6_IeP1ehxFB1fqjX8MdzrQAGOuHCe-myRt74nT8mGtvycNQRdgPv_D9YfKGM-DvwQCYIdpHe2IVOxqnDH7awYJ7vAlPqrmVhj8lYVHBTlUekXQVtQl4Ikv6mcsubomg/s1600/Fact+26.png" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhWLeuPV0d_etvE6_IeP1ehxFB1fqjX8MdzrQAGOuHCe-myRt74nT8mGtvycNQRdgPv_D9YfKGM-DvwQCYIdpHe2IVOxqnDH7awYJ7vAlPqrmVhj8lYVHBTlUekXQVtQl4Ikv6mcsubomg/s1600/Fact+26.png" height="320" width="294" /></a></div>
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Thanks for reading!edsgirlhttp://www.blogger.com/profile/05670922214975559895noreply@blogger.com1tag:blogger.com,1999:blog-6144418337596366487.post-6728620432232442072015-05-12T09:53:00.000-07:002015-05-12T09:53:00.190-07:00Ehlers Danlos Syndrome Awareness Month- Fact 21, 22, 23<div class="separator" style="clear: both; text-align: left;">
All the credit from these graphics goes to the Invisible Zebra Facebook page please go and like their page and let them know that I sent you</div>
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Fact 21:</div>
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I have disc problems and it is very possible. The thing with EDS is that it affects SO many things and yet you still look fine on the outside. Its amazing going through these graphics and to pretty much everyone I can say "Yeah I experienced that". Although I hate others have experienced these problems it is nice to know that I am not alone.</div>
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Fact 22:</div>
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It is so funny as I am writing this post I am sitting here with a dislocated jaw. I have horrible TMJ problems and sometimes I get very concerned that I have a cavity but it is my TMJ pain radiating through my teeth.</div>
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Fact 23:</div>
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I have low blood pressure and for a long time I had something called "drop attacks" where I would just drop to the ground because all the blood had pooled in my legs, now I use compression stockings but I still have them from time to time. I also am very prone to passing out. I have palpitations and it isn't nice. I also have very bad headaches and migraines.</div>
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Thank you for reading!edsgirlhttp://www.blogger.com/profile/05670922214975559895noreply@blogger.com0tag:blogger.com,1999:blog-6144418337596366487.post-12497439117787577382015-05-11T09:42:00.000-07:002015-05-11T09:42:00.103-07:00Ehlers Danlos Awareness Month- Fact 18, 19,20<div class="separator" style="clear: both; text-align: left;">
All the credit for these graphics goes to the Invisible Zebra Facebook page. Please go and like their page and tell them that I sent you.</div>
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Fact 18:</div>
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One of the main things that I struggle with is tears and strains, even after the joint has gone back in everything around it hurts just as much if not more. It is painful. I also have spasms and they can be very debilitating</div>
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Fact 19:</div>
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I also have very bad neck pain. I have to use a neck brace quite often as if I sit for a long period of time I am unable to hold my head up.</div>
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Fact 20:</div>
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I also have lower back pain! It hurts to sit and stand too much the only way that is somewhat comfortable is laying on my side. I also have sciatica which is a really horrible feeling!</div>
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<br />edsgirlhttp://www.blogger.com/profile/05670922214975559895noreply@blogger.com0tag:blogger.com,1999:blog-6144418337596366487.post-60182930768838059902015-05-10T09:29:00.000-07:002015-05-10T09:29:00.173-07:00Ehlers Danlos Syndrome Awareness Month- Fact 15 and 16<div class="separator" style="clear: both; text-align: center;">
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The credit for these graphics goes to the Invisible Zebra Facebook page. Please go and like their page and tell them I sent you.</div>
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Fact 13:</div>
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There really isn't a lot of treatments, and a lot of the treatments don't work effectively. One of the treatments is pain killers and that is not a good thing as they are not the best for the liver etc. I use a lot of different braces to prevent dislocations and I also use a wheelchair to prevent hip and knee dislocations</div>
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Fact 14:</div>
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I have POTS and it is a horrible condition it makes me faint often and I don't handle things like heat because of it. I have to use compression stockings because of blood pooling or else I have drop attacks</div>
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Fact 15:<br />
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Collagen effects so much more than people realise. There have been a lot of these problems in my family and in me. EDS is so much more than just hypermobility<br />
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Fact 16:</div>
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I had all of these problems, I was called a floppy baby and I took a long time to sit, stand, walk and talk</div>
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Thank you for reading! I hope that you enjoyed it. Please share this for EDS Awareness and let Invisible Zebra know I sent you!edsgirlhttp://www.blogger.com/profile/05670922214975559895noreply@blogger.com0tag:blogger.com,1999:blog-6144418337596366487.post-27651917156331205782015-05-09T09:00:00.000-07:002015-05-09T09:00:11.283-07:00Ehlers Danlos Syndrome Awareness Month 2015- Fact 11 and 12<div class="separator" style="clear: both; text-align: left;">
The credit from these graphics goes to the Invisible Zebra Facebook page please go and like their page</div>
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Fact 11:</div>
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I have dislocations and subluxations multiple times a day. While it is important to strengthen the joints physic does not work for everyone. I tried physio so many times for extended periods of time but it made me worse. While I think physio can work if it doesn't work for you thats okay. There are some great suggestions in this post. For me heavy lifting is a soap bottle when I was doing physio I couldn't use the weight so I had to use the soap bottle!! Haha!</div>
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEg4jUGWiMv4UYUY9rN0oq-oN92IBvFfZj05J6wY_YzgPsRpJmguPPVcp77AroUQZMFf4WYgY2_hooRK_kFgDySWgmpPpMutRxPWXo1LNRm2Mu_xN3EnxkM3FAVlyuDKAM89_-dZfrZM7fc/s1600/Fact+11.png" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEg4jUGWiMv4UYUY9rN0oq-oN92IBvFfZj05J6wY_YzgPsRpJmguPPVcp77AroUQZMFf4WYgY2_hooRK_kFgDySWgmpPpMutRxPWXo1LNRm2Mu_xN3EnxkM3FAVlyuDKAM89_-dZfrZM7fc/s1600/Fact+11.png" height="320" width="293" /></a></div>
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Fact 12:</div>
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Prolapse has happened in my family a lot and I am not ashamed to say I have had this problem. It isn't a fun problem and their isn't an awful lot that they can do about it but it isn't something to be ashamed off as you can't help it.</div>
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<br />edsgirlhttp://www.blogger.com/profile/05670922214975559895noreply@blogger.com0tag:blogger.com,1999:blog-6144418337596366487.post-26209738889838606902015-05-08T08:43:00.000-07:002015-05-08T08:43:00.087-07:00Ehlers Danlos Syndrome Awareness Month 2015- Fact 8, 9 and 10<div class="separator" style="clear: both; text-align: left;">
I hope that you are enjoying these posts, I know my regular readers may be getting sick of me mentioning the Invisible Zebra but I want to give credit where it is due. These graphics are made by the Invisible Zebra Facebook page please go like their page and tell them that I sent you.</div>
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Fact 8:</div>
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My skin splits very easily when I grew my skin split on my back because of how incredibly fragile my skin it. I fall all the time and when your skin splits and your joints dislocate it is not a good combo!!</div>
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Fact 9:</div>
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I bruise very easily this bruise is from my dog just putting her foot on me and her nail scratched me. When I show people this they think it was a surgery and this was a week after it happened. </div>
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEg9TLOxpwbJzcJpX3U5siLzrpm-3QCWim_NV_LPEVbKbJ1H5jqNGRsJqKR14yUf8q_28ETb43XT4JYFc82otcNknVXVXiam5T1jNR44nWVrD3Bf0-2qTlV0xo2ncC64DbWN-il_FW4zGoc/s1600/IMG_0361.JPG" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEg9TLOxpwbJzcJpX3U5siLzrpm-3QCWim_NV_LPEVbKbJ1H5jqNGRsJqKR14yUf8q_28ETb43XT4JYFc82otcNknVXVXiam5T1jNR44nWVrD3Bf0-2qTlV0xo2ncC64DbWN-il_FW4zGoc/s1600/IMG_0361.JPG" height="240" width="320" /></a></div>
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Fact 10:<br />
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My mum has very bad varicose veins and she only has "mild" EDS. I don't yet thank goodness but I know many who have them and it is hard on their self confidence depending on where they are they don't want to wear shorts etc but varicose veins don't make you any less beautiful, no one is perfect and that makes them beautiful. Its inner beauty that matters<br />
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjzWjjpDKtMVW6XG3YVXdiGAa3Lnov2zwfionzh5alTxpxJBMPjp_KcQt7JqZ06yIvE1OLqGtuecx1p8dzPn5DGpW0bZr3V4f1meEUxWzXuQH74WKS_10agG_qrieXcql9ICkB_AsolVWk/s1600/Fact+10.png" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjzWjjpDKtMVW6XG3YVXdiGAa3Lnov2zwfionzh5alTxpxJBMPjp_KcQt7JqZ06yIvE1OLqGtuecx1p8dzPn5DGpW0bZr3V4f1meEUxWzXuQH74WKS_10agG_qrieXcql9ICkB_AsolVWk/s1600/Fact+10.png" height="320" width="293" /></a></div>
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Thank you for reading please share this to raise EDS awareness and go and like the Invisible Zebra Facebook page.edsgirlhttp://www.blogger.com/profile/05670922214975559895noreply@blogger.com0