03/09/2014

Now that I've told my whole story, (it's below if you want to read it) I just wanted to explain my reason for starting to blog about my experience. I've chosen to do this because while I was dealing with everything, I was consistently surrounded by people who were always healthy and didn't really understand me. At least, that's how I felt. I'm 16, I'm sure that's not uncommon. It became very frustrating for me when people asked, "Hey why don't you come to school anymore?" Because it took all my self-control not to reply "I'm trying my best to be here every moment that I can, bitch." Hopefully, I haven't responded like that to anyone thus far. I really am appreciative of my amazing friends for always trying to understand every detail of my disease. It really doesn't bother me when people ask about what JIA stands for, what does 'idiopathic' mean, and why don't I handwrite my notes? At least they're trying to understand. That's a few hundred notches above people who hear "arthritis" at the end and kind of tune out everything that came before it because they think they know already. So, I'm writing this for you, here and now, because I never want girls (or boys, whatever) in my position to be surrounded by people who feel the need to tell them to "hang on" or "it's okay". Because nothing is worse than waking up tired, spending your whole day being absolutely exhausted, nauseous, having a headache, being panged randomly with pain anywhere and everywhere, and not really feeling "up to doing something", and then going to sleep wishing it were a coma. So that's been the past three years (in about a week) for me. And 250,000 other kids in the US have exactly what I have. And that doesn't even include other chronic diseases. So I wanted to be a voice for other people in my position who need validation for their emotions, someone who truly gets it, or just to know that I'm not going to tell you a bunch of crap about the situation we are in. xoxo Malley <3

My Whole Story. Start to Present.

Starting in March of 2011, I became very sick after finishing a show at the end of my seventh grade year. I didn’t have a diagnosis and so I continued on with life as though nothing had happened. That summer, my family met up with some friends in Europe and I was desperately ill the entire trip (which lasted 2½ weeks). My parents thought that I had mononucleosis after I spent the next month after we’d gotten home lying on the floor. So, I was tested for that, but everything came back negative (which we expected because the symptoms normally set in after the detectable stage). We went in for many blood tests, looking for lupus, diabetes, hypothyroidism, etc. Nothing turned up. My entire eighth grade year was spent being quite ill with no answers. By the end of my eighth grade year, I’d done at least 5 sessions of blood work, been to the doctor 14 times, and was sick more than 120 days between September and June. We still didn’t have a diagnosis after 14 months. And to this day, I’m not really sure if I ever had mono, but my parents are convinced I did. Finally, an anti-IGE receptor (which detects how many things your immune system is fighting) had turned up in one of my blood tests that had my name fast-tracked at U of M’s Mott’s Children’s Hospital. People typically score between a 0 and 5 had come back with a remarkably high 27.9. My name got sent to the rheumatology department at Mott’s. I saw Dr. Mohan in June of 2012. She diagnosed me with Juvenile Rheumatoid Arthritis. The name is currently being debated in the medical world and been renamed by now as Juvenile Idiopathic Arthritis (JIA). The word “rheumatoid” means that it had been caused by the joints being worn out, which cannot happen in children. It was replaced by “idiopathic” because this means that your white blood cells can no longer tell apart your own body from bacteria or viruses. This diagnosis made the 27.9 make sense. My body was fighting off a lot of things…it was just myself. They diagnosed me super early, so I hadn’t developed any symptoms yet. But by September of 2012 (my freshman year now) I’d got a laptop approved by the school so I didn’t have to write any more of my notes, a 504 plan approving excessive sick days, and 2 copies of each book (one for at school, and one for at home) so I didn’t have to carry them back and forth. In December of 2012, I went to a homeopathic doctor and tried to go that route. I continued that medicine off-and-on (sometimes successfully, sometimes not) until July of 2013. Backing up to February 2013, I gave up a series of foods that my homeopathic doctor had told me to do including wheat, potatoes, tomatoes, peppers, seafood, oranges, grapefruit, strawberries, raspberries, and a few other things. I had about a month and a half to 2 months where that really helped. But by mid-April, I was no longer feeling good every day. There was another huge span of time where nothing changed. From April 2013 until July 2013, things were steadily pretty bad. But in August, I decided to move schools which provided a huge relief of meeting new friends and having new classmates. I successfully made it to school every single day for the first month of school. And I was feeling the best I ever had. I started feeling pretty sick again by the end of September 2013. After about a month, I went back to Mott’s when they told me something I was absolutely not expecting. I was in remission. Remission is a period of time during a serious illness when the patient's health improves. But, my health wasn’t improving. It seemed like it was declining steeper and steeper every day. Eventually, in December 2013, they called and told me I had a new diagnosis. It’s known at Pain Amplification Syndrome (PAS). It’s basically being oversensitive to pain signals in your body that shouldn’t being sent out. It causes pain in everyday things like taking the stairs, writing, or even sitting still. Doctors don’t tell patients about it because it’s a condition caused by the brain’s confusion. If you know about it before hand, you’re way more likely to develop it. I fit perfectly into the “at risk” group because I’m a girl between the ages of 14 and 16. The hospital suggested a treatment plan of attending school for 7 hours a day (which already was not happening), doing 4 hours of physical therapy, and that that would solve my problems. Neither my mom nor I thought that this would be the way to go about it. Because of my mom’s dedication to solving my case she found out that 6 hospitals in the country actively have Pain Management Rehabilitation Programs that have an 88% success rate. “Success” in other words means returning to everyday activities (which many patients including myself have given up), attending school full-time, feeling much less pain, and having all these still be true a year after the program, and three years after the program. The programs are quite similar no matter where you go. Living in the hospital for 2 weeks (2 hours of school each day, group counseling, massage therapy, physical therapy, and nightly activities), and then doing a similar thing, but going home each night for one week. Having nothing to do with my health, I turned 16 on January 14th and it was my favorite birthday I’ve had yet. So that was pretty cool! On February 4th, 2014 I visited Cleveland Clinic Children's Hospital (one of the hospitals that have a Pain Management Rehab Program) with some good news and some bad news. Good News: The three doctors I saw while I was there all agreed that I would benefit from their program and said that I would be accepted into the hospital. Bad News: Insurance won’t cover my stay unless I try 2 months of failed physical therapy from home while attending school fulltime. So, that’s what I’m working on right now. I had my first appointment with my amazing Physical Therapist yesterday. She works on pressure points and that kind of theory for working towards health. At the moment, she’s doing mostly things on my brain because of some unresolved concussions I’ve had (no one worry, they were several years ago) and PAS. She also has been working on pressure points that relate to my liver. Because the JIA dumps a lot of excess on my liver and JIA medicine also hurts my liver, she’s been releasing a lot of that. I’m not gonna lie, it feels pretty horrible (which she warned me of). But I firmly believe in her theory, so physical therapy is going…“well”. I will be going to Cleveland Clinic Children’s Hospital, probably as soon as the end of April or in May. In other areas of my life, my favorite color has recently become pink, I’ve become obsessed with vinyl records and I actually just bought a pink record player! Let’s see… Teen Wolf is my new favorite TV show, I’m currently reading The Fault in Our Stars, Great Danes are my favorite dog breed, my room is painted blue with one wall from floor to ceiling painted like a beach, and…I can’t stop listening to OneRepublic’s new album Native.