Losing count of the days and the names

I haven't been posting a lot as I have been really struggling with trying to manage my life with pain. 
I have bad news to tell, I have been diagnosed with Postural Orthostatic Tachycardia Syndrome - Dysautonomia. I have also come off all of my medication, including Lyrica and Panadol osteo. Which basically means, every time i sit or stand up I get light headed and my heart races because the blood is settling in my lower body instead of my head. It makes me feel like I'm having a heart attack and I see stars and fall into the wall. I was also starting to get terrible side effects from taking so much of the prescribed medication that it started to upset my stomach and so on, where I could no longer handle it. I'm doing alright off of my medication. I did not wean myself or anything, I just stopped. I kind of went cold turkey from the Lyrica, shaking and what not.. but I got over it. I was struck with Gastro virus for a while which ultimately made my situation worse. I have not attended school in many weeks. I've had a meeting with the principal and the guidance cousillor and they suggested I do home schooling (BSDE). I feel like they no longer want to deal with me at school and tried fobbing me off with the opportunity at reach. Although, I do agree that in my sistuation, distance education is probably the more suitable choice for me. Yes I have lost friends from not being at school and that is difficult, but if I get added to a virtual class, I may make some friends through the social media side of the schooling. I can also no longer eat products with dairy or egg as I become very sick. I'm afraid to eat. The only thing I can eat is bread with nuttelex (nut free, dairy free, egg free etc) butter, which I haven't tried yet. I am able to eat Thai noodles from the local noodle shop which is funny enough. I'm not eating often, only at dinner time and I'm not hungry or anything. Do I have an eating disorder? I want to eat, but I just can't. It makes me feel too unwell at the moment. I lay in my hospital bed at home and just watch movies because I'm in too much pain to do anything else. 

Hazey days

So I haven't been posting as often as I would have liked to, due to me struggling with managing my pain at the present times. I've started back at school and I'm not doing so great either. It's really hard, going to school, just to sit alone in every class and at lunch time with no support from any of my friends. I'd really appreciate if just one person talked to me and asked me how I was, even though i would probably ball my eyes out and cry. On my first day of term two, last Tuesday, the only day I went that week, I sat by myself at lunch and cried. I felt like a freak because I literally had no one. Tomorrow will be my second day and I really don't want to go, just to sit alone again. I can't even concentrate in class because of my pain levels and people around me just think dumb. I used to get all A's now I'm scraping in on an E or an NA mark. I've been suffering with jut about every part of my body lately, my hands, arms, shoulders, tmj, neck, back, stomach, hips, knees, ankles an my fingers and toes are also arthritic and swollen. I lay here trying to swallow my tears, but the pain is becoming too strong, that I am no longer able to keep pretending that it doesn't hurt anymore. I just want to be normal. I can't even afford the braces/wheelchair/etc I need to be able to maintain my conditions. It's so hard to wake up in the morning, knowing I'm going to be in pain for the rest of my life. I've read that a lot of EDS sufferers die at young ages with organ problems, this worries me. I have all of the symptoms of POTS too, an every type of EDS (6 types) I fall under most of the categories also. I'm actually terrified. If I'm in this much pain at 15, what about 30, 70? How am I going to get through this? I downloaded this pain app which let's you mark in your pain, I've done 3 days, so far it's shown one flair up over 3 days.. I can't wait to show my pain cycle to a doctor! I just wish that there were some people or organizations willing to fund the equipment I need to live a relatively normal life. Today I painted a picture to try and keep my mind off of the pain, it only heightened the level of pain in my hands. This was heart breaking. Soon, I will no longer be able to do the things I love and enjoy;  and this is beginning to tear me apart. If there is anyone with EDS/RSD/CRPS etc that can relate, please leave a comment.

Unkown days, lost time

I haven't posted for a while, this makes me sad. I'm totally un-aware of the number of days that have passed me by. I've been really struggling, both physically and mentally. I was given my jaw splint, it's quite uncomfortable and has given me a lot of tooth pain. I have also tried new ways on managing my pain, including Acupuncture. I was given 5 acupuncture needles to place in my ear for four days. Although I noticed my levels of pain, reduced by a fair bit than usual, it gave me such terrible pain in my ear. It also resulted in me feeling dizzy and nauseous. After weighing up the pros and cons, I have decided not to use acupuncture on the ear as a form of pain management as I felt that the ear pain was more of a distraction from my other pain. My jaw has not been sliding out of place as much since I have inserted the jaw splint. It makes me talk funny, but I guess that's okay. My ankles, knees, hips, back, neck, jaw, shoulders, elbows, wrists and left thumb have been bothering me a lot.
Since my last post, I have been diagnosed with Osteoperosis imperfecta, which means that I have 150% more calcuium than a normal person of my age, this means I am borderline brittle bone disease. My doctor also noticed today when he examined my whole body that I have gluteal crease abnormality that I was born with. Ooh look, another thing to add to the list. The other night my eyes were constantly blinking and I couldn't stop. I also think I have blocked tearducts as my eyes are constantly watering. I have a nasal spur which I don't think I mentioned it previously. Tomorrow I am getting scans done on my uterus, which I am not looking forward to at all.

But You know what? I was born with some terrible medical conditions. I've learned to try and live with it although things are getting worse for me, I still try and look for the brighter side of the situation that I'm facing. It's probably one of the hardest things in the world, to be receiving diagnostic result after result, condition after condition. But when things get personal, it's probably the most heart aching, destructive thing. Being torn down and stripped back, with open wounds is even worse. There is a toxicity that over rides all and it's such a terrible thing. I'm suffering, so are others, but being attacked emotionally, while being fought by your own genes is so utterly destructive for a person. Take a look at yourself, take a long, hard look at me and realize that causing more destruction is only knocking me down even more. I hate how people are such horrible creatures, bound into their DNA with such darkness, it's such a terrible thing.

Losing track of time

I can't even remember what number of days have passed since I last posted. I feel terribly annoyed that I didn't get to update on how I'm going on the correct day.It's quite frustrating as I was hoping for daily posts. I haven't been feeling the best of late. I've been in a lot of pain also. I've had problems with just about every bone in my body. Both ankle, knees, hips, shoulders, elbows, wrist, left thumb, back, neck and jaw. I've been having allergic reactions to every meal I've eaten. So, tomorrow I'm going to the doctors to organise testing done to see if I've become intolerable to other foods, as I am already prophylactic to peanuts and tamarind. Oh joy. I've been feeling a little blue of late as I've been gaining huge amounts of weight. I went from having a thigh gap to none, I've visably gone up a cup size and my stomach is bigger than previous weeks from being on Lyrica. I'm going to be reducing my intakes to liquids also. I tried a soup diet, but I got sick afterwards. I've also tried Sustagen, but it tasted like a thick, strained custard tart! On thursday I'm going to get my jaw splint mouth guard thing and having a physio session done I think. I've been looking foreward to this for a while. I'm also looking forward to making clothing. I'm picking up a few things and I'm going to make some cool stuff to try and take my mind of the pain. I've also been painting a few pictures and drawing, but I have to take a lot of breaks as my hands get really sore and tired. Like right now, writing this post. I went to the Art Gallery in the city with my friend on Saturday, she pushed me around in my wheelchair. It was a lovely day over all, I did get really sore though. We also went to the beach at 10pm and left around 12am. It was really lovely, to just go sit on the sand, enjoy the night sea breeze and the smell of the ocean. It was amazing just to simply put my feet in the sand and the water, even if it was pitch black!
I'll be updating how it goes tomorrow!

Today is day 14 and I feel like crap. I didn't get to post earlier as my hands were sore. I took my first lyrica in the morning and at night today and I felt really sick. My jaw, feet, knees and hips, shoulders and wrists hurt today. I was also struck down with an allergic reaction which left me sick for ages. I woke up to write this post as I'm in a bit of pain and couldn't sleep well. Tonight I had Italian minestrone soup for dinner, with just the liquid to consume. Atleast it tasted good and didn't make me feel any worse. My arms are starting to get really weak again. I've had several breaks in writing this short passage to rest, but the weakness relapses often. I'm trying to brave through the pain I'm having and to try and walk faster with my crutches, but my left ankle is slipped out of place if I do so. I've had a few headaches today also. I'm a bit disappointed that I didn't get to post this before the night ended. Oh well. I'm really looking forward to getting my jaw splint because I'm hoping it will reduce some of the terrible pain I'm experiencing like at present. My mum bought me a shower mobility stool today to sit on, while in the shower; it makes it much easier for me to get up out Of the shower instead of off of the floor. So it was a bargain from Aldi at $49.99 I don't think I've ever seen any cheaper anywhere! Not even in a mobility store/outlet. Well I must go try and get some rest now.

Day thirteen, if only is was just a dream

Today is day thirteen and I've has a terrible day. My thumb has been really bothering me and I had to re bandage it because it was so sore. I also tried my first vanilla sustagen an it tasted like I was drinking a custard, it was thick like a milkshake and was worse than a protein shake. Today I had problems with my left able, left knee, left hip, left shoulder, left thumb, left side temperature mandibular, right ankle, right knee; right hip, right shoulder and right wrist. I also had right sided pain with my pelvis/hip joint area. I got the phone call saying I go for my splint fitting for my jaw next Thursday which will be good. And I also have my first physio appointment with the hospital for this year next week. Mums taking me to the beach tomorrow to just sit on the sand and relax, so hopefully that will be great. I can't type much as my left hand is bandaged and my right hand is super sore also. Tomorrow I will be increasing my Lyrica intake from 25mg at night, to 25mg two times a day (one in the morning and one at night) so I'll update how that goes tomorrow.

Struck down with pain on day twelve

Today is day 12 and what a horrible day it has been. I've been in so much pain. Today I dislocated my left thumb and I had to get an X-ray and get a ball bandage done so i can't use my whole hand, but it was causing more pain a the bandage moved so I removed it. I also got my flu needle today. My left ankle, right ankle, right kneeC right hip, left shoulder, left elbowF left thumb, right shoulder, left side lumba and left side temperal mandibula have been bothering me today. Not only have I been crushed by physical pain today, but emotional pain. People have made me feel like complete crap today. I had a massive fight on Facebook with some guy over a status I wrote to do with being in a wheelchair. I know that everyone is entitied to their own opinion, but there is a line that needs to be drawn. Some people are so ignorant and it upsets me deeply. You are not in a wheelchair, you do not go through the pain and suffering as I do, you do not live in my shoes. Therefore you have no right, what so ever in saying how I should feel or act. Some people are so ignorant and are just completely unable to comprehend and grasp the topic of understanding a medical condition. The lack of education involving what right someone has over a person with less physical privlages with clearly more academic skills to judge and compare someone's life to another is appalling. You can not compare pain from one person to someone with emotional pain. Just because you have had family problems in your life, does not mean you can compare yourself to a person with disabilities and say that you know what they're going through. You simply can not. You can learn to understand, but you can never truely know unless you are that person. There is a difference. I'm really frustrated. I could go on for hours about how I'm feeling but it's hard to type with one hand. Someone told me to stay optimistic and think positive because technology is fat changing. Yeah right. Why is there any reason to stay "optimistic" or "positive" when unless someone is able to break throug the space time continuum, discover the genetic engineering required to cease the diseases from being genetically passed on before the unborn child develops in the womb. Which is already too late to genetically engineer the coke gon and connective tissue of my unborn self. However, thus resulting in me, simply not giving a crap about optimism.