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.

Woven with pain on day eleven

Today is day eleven, what a terrible day it was. I have had terrible pain with my left and right ankles, my right knee, right wrist, left shoulder, right shoulder and left and right elbow, temple pain, right lower lumba pain, neck pain, arthritic feeling in my fingers and pain on the right hip. I had to have a sleep this afternoon because I was feeling really tired and in pain. I was only asleep for an hour I think, but it helped a little bit. I've found that ever since I've started taking Lyrica, I have extremely vivid dreams, not always night mares though. I'm able to remember every single detail of the dream which is quite an odd experience on my behalf. As I said yesterday, I was looking forward to going to the beach with my friend, but it was crappy weather and I just didn't feel like going anywhere. I told a random person that I was in a wheelchair on Facebook, and they immediately stopped talking to me. It's a horrible feeling that you get when you realise that no one genuinely wants to associate with people who have disabilities. Just because I'm in a wheelchair for periods at a time, does not mean I'm a "retard" or a "freak". I'm a perfectly sane person with medical problems that affect my limbs, not my capability of talking, or being able to excite mathematical equations. Some people are so rediculous, they throw around the words like its nothing and call people terrible and hurtful things.
Sometimes I'm afraid to tell people that I can end up in a wheelchair at any given point. Because not many people are willing to accept people into society with disabilities. The world is such a terrible place!

Day ten, I need a boost of adrenalin

Today is day ten of being on Lyrica and I feel like complete and utter crap. I'm in so much pain that I can't even tie up my hair because my arms get so weak. I dislocated my right ankle tonight and I'm in terrible agony. I couldn't even use my crutches because I couldn't bare any weight on my left leg, let alone my right. Mum had to wheel me down the hallway to the bedroom in my wheelchair, it's a tight squeeze but we made it. I feel like a failure, what kind of parent should have to deal with a child with disabilities when they have their own pain? It makes me so upset, I don't know what i would ever do with out my mum, she means everything to me. My left and right ankles were severly painful today, my right hip, leg an right shoulders, left and right elbows and right wrist, temporal mandibular and lower lumba pain, as you can tell from the list..pain was scheduled to rise today. I wish I could do the things I love, go outside without being stared at for being in a wheelchair and just to feel like a normal kid my age. People don't understand how to cherish the little things in life, like riding a bike or flying a kite, until those privileges get snatched away from them. It makes me terribly sad to see other people in pain. Today, mum wheeled me to the grocery store and as we went past several people having conversations, they paused and stared at me. It's a terrible, terrible feeling to be examined by complete strangers, labelled as a retard or a freak. People don't understand ehlers danlos syndrome. One day you can be walking around having fun, playing baseball and the next day you're in a wheelchair, on crutches, in a sling or wrapped in bandages. I can't even eat dinner without my jaw sliding out of place continuously. People just don't understand, that some people may looks perfectly fine but they can have such debilitating diseases. Things like the conditions I have will NEVER get better, you can reduce the impact it may have on your life, but you can't rid it from your life. It's hides in the shadows and jumps out to test your faith and strength to keep going. Sometimes and injury can heal in a few hours or days, Sometimes weeks, months and years. I often wonder what the highest age is that someone lives to with having eds/RSD/CRPS when every form of medication, technique and mental strength ceases to help. How does anyone live past 15, let alone 80 something. Chronic pain affects you mostly physically and mentally/emotionally. Tomorrow, my friend is going to take me to the beach in my wheelchair for some fresh air. I'm hoping I can get out of my chair and sit in the sand and rub it over my legs to desensitize them. I feel CRPS pain in my legs so I think it's a good idea to nail it on the head before It gets worse. Oh well, I'll see how it goes. Hopefully it will be a great day, without storms!

Losing track of time on day nine

Today is day nine. I don't feel as terrible as I did in the previous days. My mouth has come back to normal and I only had painful left knee and left and right shoulders and my jaw today. Although I decided to moisturise my legs and it felt like I was getting scalpeled open! It lasted for an hour or so but reduced over time. It was a terrible sensation!  Supposed to be getting a bone density scan tomorrow, but it's raining terribly and it's not particularly a good idea to go out in the pouring rain in a wheelchair! So I suppose I will have to reschedule that appointment. I'm been having dreams and nightmares that I'm able to remember when I awake, which is quite annoying! My jaw keeps using out of place and causing me grief and it's quite annoying! Im only beginning to feel tired at the moment so I suppose I'll head off to sleep now!

Day eight, full of hate

Today is day eight and I'm in terrible pain. My left and right shoulders are giving me a lot of grief, as well as my left hip, right knee, right elbow (stabbing pain), left ankle, lover back and temperature madibula (jaw). The right side of my rib cage was hurting when I sneezed also. Today I have really discovered some of the side effects of taking Lyrica. I gave been itching all over and constantly feeling nauseated. The worst side effect of taking Lyrica today was the uncontrollable exasibated levels of saliva being produced. I was drooling, as I ate my dinner; saliva ran out of my mouth and I was unable to control it. I produced 60ml in 6 minutes, of what I let fall from my mouth into a measuring jug. I've been getting terrible headaches and nightmares of late also, which is a bummer. I've been feeling really depressed at the fact that there are so many jobs I will be unable to do with suffering from the lengthy list of conditions and problems I have. I've also felt disheartened at the fact that my friends don't wanna hang out with me if I'm in my wheelchair and do not want to be seen pushing me around in Public. This makes me feel like complete and utter crap. It's quite sad how people of today's society act, the level of immaturity and the lack of care  towards others fills me with such rage and sadness. It's such a terrible way of life that the people of Australia live. With no consideration to other peoples feelings and no compassion for people who do feel emotions and aren't robots; what kind of generation is this? "Generation don't give a crap about others". Some people want to be loved, and enjoy the things that life has to offer. There is so little I am able to do without being torn apart by pain, but I would like compassionate friends to stay by my side. But it's too much to ask  I suppose. I would appreciate a moment where pain didn't matter and I was surrounded by compassion and filled with content.

Day seven, still praying to heaven

Today is day 7 and I feel like a wreck. This mornings events included going to the dentist to get impressions for my mouth guard mould for my jaw, my mum running me home in the wheelchair through the rain with a bright pink poncho on and getting wheeled into a puddle! Atleast I had a good laugh with mum. What a sight! After all that excitement I started to get quite tired and just layed down for a while. I got this sharp, stabbing pain in the bone of my right elbow. It felt like someone had taken to biggest knife they could find and had scrapped it alone my bone! It's an excruciating pain which lasts no longer than a minute but occurred several times throughout the night. It almost brought me to tears! My jaw has slid out of place a few times and wouldn't go back into place, which is also causing me a fair bit of grief also. I also noticed I have a rash (hives) that were really bothering me today. My right shoulder is giving me a hard time with my left ankle and right knee too.  I also had terrible pain in my temples which lasted a few minutes and was excruciatingly painful to endure. I had a bad day with my stomach also. I'm very tired and I guess it's the lyrica that's causing these outrageous bursts of pain! I'll call my doctor in the morning about the occurrence.
I have been looking at cars lately for when I get my license (if I'm allowed to with my condition) and it's hard to find vehicles that will accommodate to my needs which is a bummer!

Stay pain free everyone x

Hit me up with a quick fix on day six

Today is day six and I feel like absolute crap. I stayed in bed all day, in pain. Today was a bad, extraordinarily painful day. My right hip with giving me a lot of grief. As well as my left ankle, left calf muscle, right knee, right foot, left shoulder and right collar bone, also my back. I had a lot head pain and pressure also. A few light headaches with pulsating. I had nausea worse than the previous days. My jaw keeps slipping out of place and causing me grief. Luckily, tomorrow I'm going to the dentist to get impressions done on my teeth so that I can get a mouth guard to help hold my jaw in place. My mums decided to take me to the appointment in my wheelchair. I'm not looking forward to it. Although, it means I'm one step closer to trying to help reduce my pain, even if it only helps a fraction. I'm putting on weight with these new tablets and I can't exercise to burn calories because of my heightened pain so I'm not too happy about that. I'm also getting booked into radiology to get another bone density scan to see if I still have osteoporosis in my legs. Wish me luck!

Day five, feeling awake and alive

Today is day 5, I have cried several times today from pain and emotional stress. Lyrica has made my hands swell, break out in a rash and made me dizzy. I have also been going hot an cold and breaking out in sweats. I dislocated my left and right shoulders, left elbow, left wrist and left pointer finger, right hip sublaxed and my right knee sublaxed. Today was not a good day for me. I tried to take my mind off the agony and layed in bed watching movies. I went outside for a little while until I became stricken with a sick feeling to my stomach. I was hoping that a breath of fresh air would do me some good, I suppose not. I tried telling some people that I will end up in a wheelchair permanently eventually.. It scared off a few people. I guess I know who will stick around to support me.. My mum. Family first, yeah it certainly applies, my mum is here beside me every step of the way. I cherish these moments when I'm in agony and she's here to comfort me. It makes me feel content and at ease.

Day four, tears hit the floor

Today is day four, a night mare. I've been suppressed to live a nightmare in reality. My hands and my feet are swelling. My legs and my arms are in a lot of pain, roughly a 7/10 with restlessness. PBo hi. One of the side effects of Lyrica is rashes, I'm covered in them. My stomach has been cramping and I haven't been able to go to the bathroom because of h medication. Today was an emotional day for me. I broke down and cried. I cried for hours about different things, all in relation to pain some how. I don't know how I'm supposed to deal with this at such a young age. I was also disappointed that I was getting prank calls when I made it clear to everyone I didn't need shit like that to annoy me when I'm in pain. My left shoulder is also bothering me at present at a 7/10. I wish I knew how to fix everything. If only I could :(

Sunshine dripping with acid rain

Today was a long, painful day. I dislocated my right knee, left and right knee, right elbow and right and left shoulder today. I mostly stayed in bed, to help ease my pain but it didn't work. Today is day 3 of being on lyrica and it's not easing my pain one single bit! I'm currently laying in my bed in agony with tears sliding down my pain stricken cheek. I hate this. I don't understand how anyone could live with this much pain; I'm just scraping through. It's times like this that personally I think I should be hospitalized with pain killers to help ease my struggles. I'm thinking of trying to make a legacy for myself.. I've been talking with mum about asking volunteers, clubs, sponsors and hospitals or famous people to donate to an Australian summer camp for kids living with chronic pain and illnesses. Like a camp to meet other people your age who feel an struggle with pain with their conditions and to make some good friends. I think that it would be a wonderful thing to meet other kids my age with similar disorders and things! I'm going to ponder it long an hard and see what I can try to accomplish in the near future. It will be a good distraction from my pain. Lately I have been writing short stories, playing my flue (bearing through the pain) and drawing to try and distract my self from the pain! But on Monday I have block exams and I'm stressing which is resulting in aggravation to my pain levels. I'm very stressed with my exams and assignments for year 11 which will impact my year 12 op with 5op classes. Ughhh I just feel like sleeping forever.

Holding on to Thursday

Today, I started off my morning with a dislocated jaw! On top of my dislocated shoulder and left ankle. Not a good start.
I took codeine, pariet, maxalon and panadol with my breakfast. I had wheatbix with milk so that it wasn't so hard to eat with my jaw although it didn't help with reducing discomfort while eating...
I started talking with a friend who also has a severe medical condition, I guess it made me feel less weird, knowing that I have someone else to talk with. I decided not to attend school today with having taken my first Lyrica tablet in 25mg last night. I feel a bit tired and lacking in concentration more than usual to be honest. I have some reflux at the moment and an ear ache with a sore sinus and throat..I think that I'm getting sick also.
I just want to be with my friends but they don't really care about how I'm feeling.. My closest friends haven't even bothered to message me. I guess this is the beginning of becoming a cat lady with no friends because I can't get out and do things. Soon I will be in a power chair (motorised wheelchair) with less friends! Oh well...
I have to think of some way to raise money to get a power chair and airfares to go to the Ehlers Danlos Syndrome Conference in Paramatta/Sydney in July.. But I don't know how I'm going to raise the money with having to buy a power chair, joint guards etc. 

A little bit about me

Hello, my names Kaitlyn. I'm a 15 year old girl, living In Brisbane. I'm currently in year 11.
I am a suffer of:

• Complex Regional Pain Syndrome (CRPS) 
• Reflex sympathetic dystrophy (RSD)
• Ehlers Danlos Syndrome (EDS) 
• Scoliosis 
• Chronic pain
• Hypermobility syndrome 
• Gord 
• Connective tissue disease 
• Previous osteoporosis 
• Weakened immune system
• Previous tumor attached to the main artery in my face
• Nasal spurs/pollups
• Permanent sublaxed joints
• Anaphylactic to peanuts, tammarind, worstishire sauce, morphine, ibuprofen, nurofen, phenergen, trees, grass etc
• Restless Legs
• Anxiety, panic attacks and depression from being in chronic pain
• Gluteal Crease Abnormality
• Osteogenesis Imperfecta 
• TMJ

And a few other things that are yet to be confirmed with study

I have been on panadol, panadene, codeine, gabbapenton and now i am trying Lyrica.
The gabbapenton made me a complete zombie and I was taking up to 6 tablets. It helped for a little while with managing my pain. My concentration levels  were rapidly reducing and I felt nausea  a lot, it helped with managing my pain for a while but had a lengthy list I side effects. ATM I am in a wheelchair/crutches with my left leg in a moon boot and my right shoulder resting from a dislocation resulting in a hospital visit.  I've held out for 5 years without taking big pills as I did not want to become immune to the pain relief so early in life and not be able to take anymore further down the track with my pain.


Today I have taken my first Lyrica, I felt a bit tired at first and it took my pain from a 9-8 whether or not that was from the tablet or rest I'm not aware. I felt a bit dizzy and weird in the head, I guess it's a bit better than gabbapenton! They say it can take up to 2 weeks to get use to it before increasing the dosage. I can either become a zombie with a reduced pain level and fail year 11 or be a half zombie with more pain and fail. It's a struggle.