17 Years Old: Aortic Root Dilation

So throughout this entire journey, through all of the eye surgeries, unexplained health problems and pain, I still held out hope that maybe this was all a coincidence. Maybe I wouldn't be in pain forever and they'd find something wrong with me other than a Connective Tissue Disorder...something curable. I know that I have a lot of symptoms and that this would explain things nothing else could, but like I said; I still had hope. 

Anyone knows the biggest worry with some of the CTDs like Marfan Syndrome is the problems they can cause with your heart.  Since they know with 100% certainty I have one of these disorders they have kept a close watch on my heart to make sure that it hasn't begun to be affected. The main concern is dilation of the aorta. This is when the wall of your aorta (your body's largest artery) begins to weaken and stretch. This is dangerous because the more dilated your aorta becomes the higher risk you are at for an aortic dissection. An aortic dissection is a potentially fatal medical emergency resulting from a tear in the inner wall of the aorta which allows blood to flow between the layers of the wall of the aorta and force them apart. If the blood tears through all of the aortic walls massive blood loss will occur and the chance of survival becomes slim. Some people may remember John Ritter's death a few years back as the result of an aortic dissection. That is why diagnosis and proper observation is vital for those with Marfan Syndrome and similar disorders. Though it is still possible those of us who are being monitored will more likely never have to face aortic dissection. Once your aorta is dilated to the point where it may become dangerous open heart surgery to replace the damaged portion is performed. Some famous figures have undergone the same type of surgery (but for other reasons), such as Barbara Walters, Robin Williams, Bill Clinton and David Letterman. 

I have undergone an echocardiogram once every year since I was diagnosed with a tissue disorder to measure my aorta. It is like having an ultrasound on your heart. I am never nervous because for some reason or other -in that department- I've always sort of felt invincible and could never imagine the results coming back any other way than fine.  I had never even thought for a second something would show up. But I was pulled back into reality last fall when my echo did in fact show that my aorta had become slightly dilated. This is no immediate concern, but it painfully shattered my denial and smacked me into reality -so to speak. I couldn't look at my mom while we were receiving the results. I knew one look at her reaction and I wouldn't be able to keep myself composed long enough to get the important information that I'd need and want to know. A few times while the meaning of the results was being explained to us I had zoned out. I wanted to be outside where I could scream. It felt so odd to get such personal life altering news while confined to a room with a practical stranger. I kept thinking about my mom and how I had to be strong because I knew this news would hurt her more than me. The things I had the hardest time with was knowing that like I said I wasn't invincible and the fact that I would one day need heart surgery (which I should mention has a very high success rate), but regardless it is still open heart surgery. Those are some terrifying words when uttered in regards to your future treatment. I will also need to be placed on beta blockers or Losartan to hopefully slow the rate at which my aorta does weaken and dilate. This will slow my body down and take some of the stress off of the artery. As of now I still have a few months left before my next echo and before they will put me on one of those medications. I haven't been fretting the next echo. I choose not to think of whether or not it will be even more dilated. I just know that for now it is only slight and I should enjoy that for as long as I can. There are enough things ahead of me to worry about when I come to them, so for now I will try to focus on the positive. Though at times it does sink in. 

For now I am living as if I had never received this news. My next appointment will arrive soon enough so until then I will pretend all is well. I'm not in denial, I'm just coping. And I think this is a positive way to do so.

The diagram to the left is one I edited based on my cardiologist's description of aortic root dilation. He drew where the widened part of my aorta was (in my case the root) and how it would look compared to a normal person's. The measurement in centimetres are just to give a basic idea of the average root size and the size of one that would be considered dilated. However the size of your aorta is based on height, age, weight etc so what would be dilated to one person may not be to another. All of this is taken into consideration and calculated when measuring the aorta to help determine whether it is a healthy size or not. Mine is just outside of the average limits which is why I say it is slightly dilated. At the moment it is 3.8cm which is larger than it should be for someone my age height and weight. Usually an aorta is not operated on until it is 5cm-5.5cm, although it is becoming more common to have the operation at 4.5cm to reduce the chance of dissection and aneurysm. Either way it would seem I have quite a while before I have to worry about that, depending on how quickly my aorta continues to expand. The speed at which it does so is unpredictable so like I said before; I try not to think about it. It isn't the end of the world, though at first it felt like it. But I have come to accept that this will be a part of my future.

16 Years Old: Right Lens Implant Dislocation, Another Surgery

While I was still healing from the last surgery a few weeks into December I got an early Christmas present (sarcasm). I noticed a ring around the outside of my right eye. I assumed it was the lens but when we went to my optometrist he said everything looked fine. I knew that even though he couldn't see a problem that there was one and it would only be a matter of time before we found out what it was. Finally after a few days of the ring increasing in length and thickness I new what was going on. I bent over to get some pajamas out of my dresser and my entire lens slid forward. I could see it sitting in my eye and remembering how I was instructed not to bend over last time so that it wouldn't lodge in my pupil I immediately stood up. It was different this time as it was slowly dislocated where as the left one had done so in an instant. Like the last time I had to wait a week before I could have surgery. This time I think my surgeon was already booked or something. So another long, long week of sleeping upright and worrying. Though I think this time I had every reason to fret. The last surgery had turned out less than what I'd hoped and my vision with my good right eye wasn't nearly what it used to be. If the same things happened again I wouldn't be able to see very well at all. Not to mention the pain. I was terrified I would have to go through all of that pain again. I just tried to remind myself that this would be the 7th time I've had to do this, and 5 out of those 7 times the pain really wasn't that bad.

My surgeon planned to reattach the lens as he had done with the left eye. The first thing I remember after waking up from the surgery is being in tremendous pain. When your in the hospital they tend to ask you to rate your pain on a scale of 1-10. First of all let me just say I hate that question because I tend to over think it. I've never been in the worst pain imaginable so how can I rate my pain in accordance to this? That being said I kept saying it was an 8. They kept me in the recovery room far longer than I'd ever had to be kept there and would return every five minutes to ask me if the pain had lowered -which it hadn't- so they would administer more pain meds via IV. After an hour or two of this they finally wheeled me back to the holding area. I just remember laying curled up in a ball on the bed clenching my fists and waiting for them to bring my mom in. Sometimes a girl just needs her mom. But they didn't bring her in for a long time after that and they still couldn't get my pain under control. See people in my family (me, mom, brother), tend to not respond much to pain killers as well as anesthetic. Like for instance if the dentist needs to freeze my mouth it takes a lot of freezing and a much longer time for it to kick in on me than most people and my mom doesn't freeze at all. And with Tylenol 3 which I take for pain most of the time I can take two at once and will feel nothing. So these heavy duty pain meds; morphine, demerol, oxycodone, and whatever else they attempted were doing nothing to relieve any of my pain. Meanwhile, I was told that my eye had hemorrhaged again -the reason for all of this pain? Eventually I just began vomiting all of the medication back up. My body had had enough of that, especially considering I didn't have any food or water in my system to help it cope. I was in the hospital for 9 hours after my surgery (as apposed to the usual 2 hours) but eventually I just wanted to go home and sleep and since nothing they tried seemed to help the nurses didn't oppose. I was still getting sick by the time we got home but despite everything I was wiped enough to fall asleep.

This recovery time was the longest by far. It took months and months before my vision had officially reached it's potential and the pain finally went away. Sadly for me, my vision didn't return to nearly what it had been. No double vision or floppy iris, which I am very thankful for, but for some reason now I can't see close to as well for distance as I used to be able to. 

This has all been very hard to adjust to. But I try to remind myself often that I am extremely lucky for the vision that I do have and that many others could only hope for such. I am not blind, I can see. And that will have to be enough. The hardest part for me is having been given that gift, only to have it taken away again. But I'm still thankful for the time I had with my implants when I could see so well and felt as if they had been mine all along. I still hold out hope that one day they will be able to fix my vision. But until I can be sure I won't go into surgery and have there be a chance of an even worse outcome I will learn to live and cope with my new vision.



Drawing I did recently. Seems fitting for these past few blog posts.
I have not let my change in vision stop me from doing what I love.



16 Years Old: "Floppy Iris Syndrome" & Another Surgery

I went to my local optometrist for a post operative check up and to voice my concerns about my new vision problem. He said that I had what he called "Floppy Iris Syndrome" (sounds made up, I know). Again he reminded us he could only offer speculation but he said it appeared that because my implant was placed further back this time to prevent it catching on my pupil and rubbing my iris that there was nothing to support my iris and so it was "flopping". This made perfect sense. Back we went to Vancouver to consult with my ophthamologist. He decided that this time he would implant a new lens. My eye was still red and not yet fully healed so the thought of them cutting into it again so soon didn't seem right to me. But he assured us it was best to do this right away as opposed to months or years later. So again -a month and a half later- surgery was booked for the following morning. I felt doomed this time for some reason. I felt that something would go wrong again and that I would not be able to see as well. Not long after I woke up from surgery my mom informed me that yet again at the last minute my surgeon had decided not to implant a new lens and to instead reposition the old one. I was really irritated and a bit disheartened, but reminded myself that he was the surgeon and he knows best. This time my pain level was a lot higher it had ever been with my other surgeries. Not unmanageable but higher.

The day after the surgery though, would end up being one of the hardest things I've ever gone through. I woke up in a tremendous amount of pain. It hurt to look anywhere, but if one eye moves so does the other. When we got to the eye doctors for my checkup (with a surgeon's helper, not my actual surgeon) I was very aggitated. I had done this 5 times before, I knew the drill. They were going to take off my patch and hold open my eyelid, shine a light in it, put drops in it. Usually I wouldn't flinch but this time I was in so much pain that the thought made my stomach turn -and for good reason. The pain I felt just from the weight of that tiny drop hitting my eye was enough to make me tear up and cry out. Of course the doc thought I was just being a baby he didn't know me or my history, until my mom promptly explained to him that even at four years old I had not complained once during all of this. This was not the same, something was wrong. I have a very high pain tolerance. After all I'd been living in pain literally everyday for the past 2 and a half years. And so she knew the amount of pain I must've been in. But things were about to get much, much worse.

To find out what was wrong I would need an ultrasound on my eye. At first I was certain they must have a different way of doing this one eyes. There was no way they were going to hold that thing down on my eye and move it around. My eye was still mushy and flat, there were stitches sticking out everywhere and fresh wounds, not to mention a drop hitting my eye was really painful and this thing would be much heavier. There was no way. But yes, that's exactly what they were going to do. I almost swallowed my heart as they explained the procedure. The 20 minutes it took seemed to drag on for hours. My fingers hurt from clenching the chair arms so hard. I could hear my mom sniffling in the corner. I was silent, -I was afraid to unlock my jaw and unclench my teeth- but she could tell by how I was holding my body how much pain I was in. Like I said, I have a high pain tolerance, and this was the most painful thing I've ever had to endure. It was like someone was splitting my skull with a sledgehammer and electricuting me at the same time. But, it needed to be done. The ultrasound revealed that my eye had hemorrhaged and was severly inflamed which was the cause of so much pain. This could be very damaging to the eye if left untreated. I was immediately put on a high dose of steroid drops four times a day (more pain!) along with steroid tablets to help the healing and zantac to protect my stomach from the steroids. I was also on a few other drops that I always take after surgery starting four times a day everyday. I was a bit traumatized the rest of the day, but proud that I had handled it -not that I had much of a choice. I was surprised to know how much pain we are capable of dealing with when left with no options though.

My eye (because of the complications) was taking a much longer time to heal than it had after the previous surgeries. I was edgy and wanted to know if my vision would be back to the way it used to be before the floppy iris. After all of the pain and worry, the drops, the traveling, the money, this surgery turned out worse than the last one. I didn't have the floppy iris now, but I had severe double vision. Along with that my vision itself had decreased considerably compared to before. I could no longer read nearly as well as I had been able to (my left eye is my nearsighted eye). I double vision I'm told is a hazzard of the type of lenses I have, along with the size of the lens. It is rare but sometimes people do end up with these visual aberrations. The name of the aberration that closest fits mine is Coma aberration.



Above is a photographic example of the coma aberration. On the far left is how a normal image would appear (in my case). The middle is how a slightly distorted image in my field of vision would look, and the far right is how bright things like lights, street signs, televisions etc, always look. This has and will prevent me from ever driving in the dark, though I suppose I'm lucky I can drive at all. Still I'm sure that not being able to get myself around after dark will prove to be an obstacle time and time again in the future.













16 Years Old: Dislocated Lens Implant & Surgery

It is odd writing about my past as if it were somebody else's. Some of it seems like another lifetime ago.

What I'm about to write about, for me, has had a huge impact on my life. It was summer, a few weeks after my 16th birthday. I was sitting right where I am now, talking to my mom. I blinked and when I opened my eyes I couldn't see a thing out of the left one. It was all a blur. It was exactly the same as when I didn't have implants and would take my glasses off. I knew immediately that my lens implant had dislocated - and I was right. My optometrist knew I would need to meet with my ophthalmologis so that we could figure out what to do but this could not be done for a week because he was in China at the time. I was instructed not to bend over and to sleep upright so that the lens would not lodge into my pupil. Let's just say it was a long week. When I was younger we were told that if anything happened to my implants that they would have to take them out and that would be it. I sat there thinking that I had lost the most precious gift I had ever been given. Sure I could see out of one eye, but it would be back to contacts and glasses regardless. Unless I wanted to remain blind in one eye. I wondered if I had appreciated my lenses as much as I should've. If I had remembered to stop and be thankful for the gift I'd been fortunate enough to receive. And truthfully, I had.

The week slowly dragged on until it was time to travel back to the big city. After an 8 hour bus ride (courtesy of Shriners, without which we would be lost!), we arrived at the Easter Seal house yet again. Luckily for me my ophthalmologist explained that technology had come a long way since my implants and that he would without a doubt be able to replace it. So surgery was booked for the following morning and I went through the motions of preperation. No food or water past midnight, arrive early to be checked in and hooked up to the IV etc. I was feeling nervous as one would, but optimistic. I felt certain all would be fine. Though, it wasn't. My surgeon decided at the last minute to reattach the old implant instead of implanting a new one. To implant a new lens is a much bigger surgery altogether. It requires a much bigger incision and a longer healing time. At first I was angry at this decision as I thought it was the implant that was the problem, but now I've come to realize that may have been the best move.

Taken a month and a half after the surgery.

My surgeon's decision wouldn't be the problem though. My eye healed fairly quickly but as my vision returned I noticed a very distracting visual disturbance. Wherever I looked my vision would bounce. It was similar to looking through a bottle of water as the water waved and distorted everything I was seeing. We went home hoping that this would get better as time went on. But it did not.

13 Years Old: Iritis/Uveitis

All was perfect with my implants for the first three years. I got used to them quickly and after a year or so it felt as though I'd had them my entire life. I never wore glasses, aside from cheap dollar store reading ones when I needed to read an atlas or globe.

When I was thirteen I started to notice a weird sensation and subtle vision change sometimes when I'd move from a dark room to a light one, or if I'd be sitting in a dimly lit room. Finally I got to a mirror before the sensation went away, just in time to see that my pupil had turned a diamond shape. I continued to catch my pupil doing this everytime I felt the odd sensation. Then a few weeks later one day out of nowhere when I was my vision became blurry in one eye and full of floaters. I've always describe it as being similar to looking through a frosted window. But for some reason or other I never thought much of it and aside from not going to the eye doctor, I didn't even mention it to my mom. This happened a few more times and each time my vision would become even more clouded. Finally, (and I'll never know why I was silly enough to put it off for so long), I went to the eye doctor.

He diagnosed me with iritis/uveitis. This is inflamation of the eye which can cause the pressure within the eye to become too high. If left untreated it can become very painful not to mention cause permanent damage. He speculated that this was happening because one of my implants was catching on my pupil so when my pupil would try to contract it wasn't able to as it should. This was causing pieces of my iris to flake off and irritate my eye, causing the iritis. To keep the fluids in my eye from building up my opthamologist put a tiny laser hole in each of my eyes under my eye lids (too small to see). This is so if the fluid can't escape from the pupil it has somewhere else to drain and the pressure won't build up. I conitnued to get the iritis/uveitis but we would treat it immediatly with eye drops and soon afterward it would be gone once again.

13 Years Old - Rib Pain

Things were fairly calm aside from my foot and chest until i turned thirteen. Halfway through my first year of high school it started to become increasingly painful to sit for the entire school day -to be more specific- my ribs began hurting me too much to do so. This became steadily worse for weeks until eventually I was calling home in the middle of the day, and then eventually missing days at a time because of the pain. On a few different times I even went to the ER because the pain was so intense.

At the same time I was having headaches more and more often and my sleeping patterns were causing me a lot of fatigue during the day. I was becoming worried and fed up with my situation. I was in pain daily and starting to get behind on my grades because of all of the missed school work. Eventually after having already quit the sports I loved, and losing my straight A grades during the first semester, I made the heart wrenching decision to leave public school and continue on at home where I had the freedom to move around and rest whenever the pain became too much. This broke my heart. I loved school. All of my friends were there -four best friends to be exact- and leaving school meant being left out of the loop and left behind. And then there were the rumours. See, my brother had dropped out his first year of high school (ironic, I know), and so whether I heard it up front or not I knew a lot of people were convinced I was making the pain up to get out of school. Rumours also began to circulate that I had dropped out because I began doing drugs. Also completely false. It didn't help that when people asked me why I wasn't in school I didn't have an actual diagnosis to give them. It was more of an "uhhhh....because my ribs hurt...." type of response. Always ending awkwardly with them being insensitive and outright acting as if I was full of 'it' or them just becoming quiet and dropping the conversation entirely. All of this only add insult to injury.

I finished the school year at home but unable to accept that this was to become my routine -my life- at the beginning of grade nine I enrolled back into the school. This would be the same heartbreak all over again. I only lasted a few weeks. I can remember being picked up from school by my mom and us having a conversation that solidified what I already knew -this wasn't working. I remember the sky was grey, dull, -as was my mood. Tears slid down my cheeks as I stared out the window trying to dodge my mom's sympathetic gaze. I knew that I had to accept the fact that whether I wanted it to or not, it just wasn't going to work. So, shortly after beginning my high school experience, I had to come to terms with the fact that this was the end of it. This was all that I was going to get.

10 Years Old: Ganglion Cyst, Chest Heaviness

Although at ten I was finally able to see on my own it was also the first time I started experiencing pain because of my disorder -though at the time we didn't know the culprit- because like I said before, we were told I didn't have Marfan Syndrome, and that was that.

My foot started to ache fairly bad every time I'd take the pressure off of it, so pretty much every time I moved, so to speak. Most people seemed to think I was faking it because there was nothing there. Tests were performed (CT scan, ultrasound), both came back clean but the pain was still there and getting worse. This would continually get worse for the next 3 years with still no explanation, until finally when I turned 13 a lump began to form on the exact spot that was causing me pain. A ganglion cyst. This is a cyst (swelling) located on top of a joint or the covering of a tendon that is filled with clear thick fluid. Ganglion cysts are prominent in the general population but those with connective tissue diseases are more likely to get them. It is also uncommon to get them at such a young age. To this day I still have the ganglion. It is 2 inches long and sometimes raised as high as an inch. The pain in my foot isn't as bad anymore but now it has begun to hurt further up into my ankle. I was told treatment would be pointless as it would most likely come back eventually.

At 10 years old I also started experiencing chest discomfort. It is a heaviness, as if someone is sitting on my chest. I was tested for asthma and have had a chest x-ray, EKG, and halter monitor but nothing has showed up that would cause this. Even seven years later I still experience it 24/7 and don't know what it is. I am so used to it now that I barely notice it anymore, although smoke of any kind and really cold air both seem to make it worse. We haven't had it investigated much since I was 10 and everything looked fine. It isn't life altering or painful and so I have learned to live with it. 

7-10 Years Old: Contacts & Lens Implants

Despite wearing the glasses that made me so self concious I was very outgoing and able to make a lot of friends. Being kind always helped me in that avenue. But yes, there were times that I was teased and I never stopped longing to be rid of the glasses. So, when the opportunity arrived for me to get contacts at the tender age of 7, I didn't hesitate to let it be known that I wanted them. I wasn't able to put them in on my own at the time, especially since they were clear and without glasses I couldn't see a thing. It was a pain in the butt to do everyday, but I welcomed it. I loved them more than anything. Finally knowing what it was like to be "normal" made it even harder for me to be seen in them. I stopped going on the school swimming trips, and I was afraid to have new friends sleepover because of night time when I'd have to switch them out for my glasses. My friends were always really good with them. None of them seemed to ever really even notice and if they did they did a good job of keeping it to themselves.

After three years with the contacts we seen a report on the news about these top of the line lens implants that were being given to cataract patients to replace their damaged ones. I almost swallowed my heart! Could I be a candidate for this? I didn't have cataracts but it was basically the same thing. Turns out, yes, I was. At first we were told nothing could be done for my eyes until I had finished growing. But for some reason or another they decided I would be a fine candidate -at ten- for what is known as Intraocular Lens Implants.

After a month or two of decision making and prepping on my opthamologist's end I was off to Children's Hospital again. The surgeries were booked one week apart and just as they had 6 years ago they both went well. There was a minimum amount of pain and my vision cleared up fast. I recieved Conventional IOLs which are the most commonly implanted and basic IOLs. Although, they did something I'm told is not all that common when it comes to implants. They implanted a far-sighted lens in my right eye and a near-sighted lens in my left eye. They were hoping this would help me to read as well as with seeing distance and it ended up being a very good decision. This was the first time in my entire life that I was actually seeing out of my own eyes and it was incredible. No glasses, no contacts, just my eyes. It was the most amazing experience I've ever had and it is a feeling that I will cherish for the rest of my life. 

4 Years Old: The Beginning - Dislocated Lenses

The first time something was ever thought to be wrong with me medically I was four years old. My mom took me to the doctor because she thought I had a lazy eye. Little did she know I was actually found to have "bilateral ectopia lentis", meaning my lenses were dislocated. The left lens was dislocated up and out; the right down and out. At the time I was only looking through the edge of my lenses. My vision in the right eye was 20/80 and 20/160 in the left, 20/400 at distance. It was hard for people to imagine, that I had never been able to see much a day in my entire life. Yet somehow I had always managed to do things like color in the lines of coloring books.

Next thing we knew we were being sent eight hours away to the closest Children's Hospital so they could remove them via two surgeries (bilateral pars plano lensectomy). It was a long time ago but from what I remember - and what I've been told, I responded to and recovered from both surgeries well. I don't remember much pain involved in either of those surgeries. Without the lenses I was as good as blind, all I could see was a bunch of fuzz. I was given bifocal glasses for the next 6 years which magnified my eyes and made me really self concious. Even at four the first time I seen myself in them I thought "I'm never playing with anyone ever again. I'll have to play by myself."

This was not a normal thing for a child to be born with and so came the first of many times in our lives the word Marfan Syndrome would be brought about. At the time not much was known about the disorder. My parents had not the slightest clue what it even was. At the time though, it was thought the prognosis for a person with the disorder was poor and that those with it would not live a very long life. It would be weeks before I would be evaluated and my heart checked for signs of the syndrome and so my mom chose not to learn anything of the disorder. She couldn't handle the thought, especially if it might not even come to pass. Although, my grandma took the liberty of researching what little info she could get her hands on and what she learned told her I would not live long. I'm told she spent an hour or so that day screaming at God in the field of their property. At the time I didn't have many physical characteristics of Marfan Syndrome other than my height and the fact that my fingers were long and slender. The big ruling factor would be whether or not an Echocardiogram showed any dilation of my aortic root etc. This is a major manifestation of Marfan Syndrome and 90% of those with the disorder will eventually need open heart surgery to replace the dilating part of the aorta. Lucky for me and my family, my Echo came back clean. I was out of the woods, or so we thought. We were told then and there that I didn't have Marfan Syndrome. What we weren't told is that it cannot be ruled out at such a young age because a lot of the symptoms including the heart problems do not develop until later in life.

But for now it was all over and life could go back to normal for a while. I could see for the first time in my life and the entire trip back home I wouldn't take my eyes off of the scenery outside. I still hated the way my glasses looked, but I loved how well I could see with them.

My Life With A Connective Tissue Disorder: A Bit About Me

I am Katie and I am a 17 year old suffering from what is thus far an undiagnosed Connective Tissue Disorder, most likely to be Marfan Syndrome.  

For those who are unfamiliar with Connective Tissue Disorders here are some basics:

Connective tissue is basically the glue of the body. It keeps many of your internal organs in place, and protects them from tearing, it also helps keep your joints from dislocating etc. It helps with scarring and many external things as well. When you have a Connective Tissue Disorder (CTD) or disease then your connective tissue is "faulty" and is not doing it's job properly. There are many different forms of CTDs from genetic disorders such as Marfan syndrome and Ehlers Danlos syndrome to others like sclerodoma with no known cause. Some are Autoimmune CTDs such as Systemic lupus erythematosus and Rheumatoid Arthritis.

Now that I've defined the basics here is a bit about me. I am a generally optimistic and loving person. I like to make others happy, doing so makes me happy. I love to draw, though I don't wish for a career in doing so. I also like to read and write. I have an amazing mom, who has been by my side every step of the way throughout this entire journey. Without her I would not be half of the person I am. I love music and would love to learn how to play the piano (better). I am always trying to grow and learn as a person. I am easily inspired and have found so many amazing people within the online communities I've joined. People who remain strong and kind and willing to help make other's lives better despite having themselves suffered more than anyone should have to. These people remind me to be thankful for my life and what I've been given, and to do everything in my power to live my life to the fullest. I sincerely thank them for that.

Personals aside; through this blog I will detail my life-long journey with this disorder. So far this has included but is not limited to; 7 surgeries, many trips to the hospital, severe chronic pain, and most recently a heart defect. I have found that the resources put out there by others living like myself prove to be invaluable and so I thought I would add.