InvisibleKitten

Hey everyone! I’m really sorry that this took a little bit longer to post than I would have liked; other writing projects have been taking up some time, albeit well-spent. I certainly didn’t mean for this to be so long, but I’m having a hard time today, and it was cathartic to just get it all out. Feel free to take whatever you want from all of this, or none of it at all, if you prefer. While I truly hope that in writing this, I reach those people out there that fear for being so alone, and that through it, I can extend a hand to those people and reassure them, this blog really is FOR ME. So much of my life has become a routine, and a daily occurrence. The people who are still in my life often fail to remember that I -am- different, and that can be hard. Because my illnesses are not often visible (though there are periods of time when walking becomes difficult, and then my various “helpers” give me away!), I sometimes fear that people don’t even believe me. I know that’s a normal, rational fear. But this is a safe place for me, a place where I can just be me, pain and all. Thanks for taking the time to even glance over all of this. We’re not alone if we’re in this together!!

When I was sixteen, I was on top of the world. I wish I could explain to you just what life was to me back then. I was always such a dreamer; I remember, my mom almost left me at the store once, because I’d fallen behind while daydreaming and she hadn’t realized she’d lost me a few aisles back. That was who I was. The girl with her head in the clouds, with huge dreams and aspirations.

I was only three years old when I saw my first psychiatrist over it. My parents were concerned with my unusual behaviors, my strange moods and my fluctuation social abilities. One day, I could talk in paragraphs, the next I would revert to pointing and grunting. I learned to read at an exceptionally young age due to an injury sustained at birth. The nerves leading to the right side of my diaphragm were paralyzed, which allowed me almost no function whatsoever in my right lung. I spent much time in bed as a child, because I had – and have – a poor immune system. Even as a young child, reading and writing were escape mechanisms for me. Drawing and painting followed. I was probably a bit indulged, to be fair, because I was… precocious, and a little bit of a miracle to my parents. Every time they took me to the doctor, it was, “she’s doing well, but we don’t expect her to make it past X.” And ever time, I beat those odds. I was always a fighter.

Slowly, I adapted to my strangely adjusted body. The periods of illness became less frequent, and their duration shrank exponentially. I could go to school just like all the other kids, though my physical activities were somewhat limited. As I got older, the risks diminished. By the time I was eight or nine, I really -was- like every other kid. I got to play on my own, go hang out with friends. In short, my parents stopped babying me, and I thank them every day for that, because it taught me that despite my own personal obstacles, there were still attainable goals. I grew up in Europe, and I have the fondest memories of getting lost in the forests with friends and playing pretend until our heads would practically explode. We explored, we reveled. We were free, and I got to be a part of that.

By the time I was a teenager, my life was pretty great, honestly. My parents had divorced, and things could be tense, but they were relatively mature about it. My mom moved to Missouri from California to live with my now-ex step-dad, and while I didn’t exactly love the idea, I got pretty good at making new friends. I started horseback riding intensely, falling in love with it, giving lessons and enjoying it every single day. It became my life, and everything else went to a back burner. I was a pretty active kid, always had something going on. Drama, choir, school clubs, a ton of friends. I loved my life. I -loved- it. The trials of the past (other than getting sick more often than most people) were so behind me, I rarely remembered them at all. I never actively thought of myself as physically inferior to the average person. The only time it ever mattered was during hay season, when I had to stay inside lest my hay fever do me under. I was so, so happy, and every day was beautiful. I wasn’t one of those teenagers who took things for granted. I knew, somewhere, in the back of my head that I had dodged a bullet. I was a well-adjusted, happy kid, until it all fell apart.

It was summertime. Best time of the year. It was hot, and gross, but all that free time! Nothing had seemed unusual; no extraordinary clumsiness – for me, anyway – no pain, nothing. Then I woke up, one morning, and I couldn’t see. Anything. The world was dark, and I had never been so afraid in my life. After an hour of cleaning my eyes out and freaking out, and regaining a considerable amount of vision in my left eye, I still had absolutely nothing at all in my right. My mom took me immediately to the eye-doctor, who almost instantly told my mom she thought it was Optic Neuritis. ON is characterized by the fact that, despite a lack of injury or disease, the nerves detach themselves from the eye because they brain sends them signals saying that the eye poses a threat to them. (I found out later that the reason I couldn’t see in either eye when I woke up, is because my brain was confused and “mirroring’ the effect.). I saw an optic neurologist, who confirmed the diagnosis, and sent me for MRIs and testing. Because ON is an extremely indicative symptom of Multiple Sclerosis.

The hardest thing about that period of time was the waiting. I felt like all I did was wait. Wait to see the doctor, wait to get the results, wait to know anything. As a then-seventeen  year old, the anxiety was killing me. I wanted to live my life, not sit around wondering what was happening. I can only imagine what it was doing to my mother and father, who were so supportive it was amazing. Finally, I was told that I did indeed have MS. Relapsing/Remitting Multiple Sclerosis – often known as Episodic MS – was a deathblow to my dreaming self. My BD went into a tailspin; I hit a low like I’d never had before, physical and emotional pain so severe that I turned to self-injury as a way to cope. Suddenly I lost the vivacious, passionate me, somewhere in a world of tests and treatments that my mind wasn’t willing or capable to deal with. I was immediately started on IV Corticosteroids. I went in for outpatient infusions of Solumedrol, and for awhile, I was fine. I wasn’t regaining the sight that the treatment was initially intended to restore, but I felt all right. The side-effects – night sweats, irritability, intense hunger, all the things you’d expect from ridiculous levels of steroids in your system – were uncomfortable but not unbearable. Then, a few weeks in, my chest started hurting. I told my mom, and when we called the nurse, she said it was probably just my heart working overtime, which is another common side-effect of the Solumedrol, and not to be concerned.

The next day, when I went in for my treatment, the nurse on duty took my vitals three times before asking me if I had previously been told I have a seriously low heart-rate, or if I was in training for a triathlon (lol). That not being the case, I was immediately admitted to the hospital, my heart beating only about 35 BPM. (The average for a nearly-adult female being about 75 BPM. An athlete’s resting heart rate is lower, to compensate for the amount of time that their heart rate is elevated.) On steroids, my heart rate should have increased, if anything. The Solumedrol had caused damage to the first chamber of my heart. An ECG revealed that it had basically stopped firing, making the other parts of my heart work much, much harder in order to keep up normal blood circulation – hence the chest pain. I spent some time in the hospital, taken off the Solu, and while my heart is irreparably impaired, a lot of the damage was reversed. Because of the high level of drugs in my system, my blood was having fits, anyways. Walking, bending, sitting and standing became agony as my blood pooled in my joints, causing inflammation and terrible bruising. I looked like a pin cushion. I had never felt so God-awful in my entire life.

It took a lot of time to get my medication situation figured out, but with patience, my doctors made it happen. Other than the  damage that had been caused by episodes, I was living  a fairly normal life. I had good days, and bad days. My body doesn’t regulate temperature very well, so I am usually very cold, and I have to physically restrain myself from giving myself heat stroke occasionally. I have a lot of sensory issues in my hands and arms, especially, causing my grasp to be a little bit off. I’ve been known to drop things on a fairly regular basis, and I hate drinking soda from a can because I usually end up wearing it – I crush the stupid cans. I have Fybromialgic pain at times, though I do not seem to have the disease itself, just a tendency to random pains, for which no cause can be determined. Due to the steroids I basically have taken off and on just to function, I’ve gained a lot of weight, and practically destroyed my metabolism, making weight-loss a difficult and often impractical thing. As with anyone, my self-esteem took a blow until I realized the most important truth of all. Being beautiful isn’t about being a size 4 with perfect skin, or looking like everyone else. Being beautiful became about so much more. About facing adversity with my head up, about being strong for the people I love, even when I felt weak and afraid. It was about courage, in the end, and that I seemed to have in spades. I could look myself in the eye and realize – this is who I am, and I’m not so awful to be. I was a functioning member of society again; I worked, I went to school, I even had a baby! My son, born in August of 2007, also has chronic health problems, including an as-of-yet unnamed seizure disorder, and learning impairments. His digestive system is extremely juvenile, making eating difficult for him, at times. His hearing was slow to develop after birth. He had a double inguinal hernia due to an immature duct – his intestines had complete blown it out, and were resting in his scrotum. He’s had several surgeries, including biopsies. Today, he’s a little bit behind the learning curve for his age, but he’s blossoming beautifully. Just like his mommy, he’s a tough cookie, and lets nothing get him down. He is truly the light and love of my life, and through him, I am a better, stronger person.

My life was going pretty well, actually, and I was slowly relearning how to be a member of society. My depression was on hiatus, and I was happy again. The pain had receded, and I was climbing my way back up to a good place. It had been a long fight, but there was a light at the end of the tunnel. However, as with all good things, this too came to an end. In June of this year, I was injured at work. While grooming a dog, my wrist was hyper-extended around a metal pole, crushing my carpal tunnel, causing severe bone edema, and doing serious tendon damage. My initial visit to the ER showed little, and I was told just to take it easy at work. I did my best, not grooming, just performing clerical tasks. As time went on, it became clear that my injuries were far more extensive than originally though. The strangest thing, however, was the bruising on my hand and wrist. Almost two months after the accident – at which point I was on temporary total disability, as my job was unwilling to work with the confines of the limits set upon me by the workman’s compensation doctor – the bruising still looked three days old. If it faded at all, it would invariable “re-bruise”, often an extremely painful process. The work-comp doctor, who was honestly a fantastic, and pleasant man, was seriously concerned. He invited a colleague in to examine my wrists. At first, they thought I might have a blood disorder. Quickly ruling this out, the new doctor had a hunch, and performed a rebound test on my abdomen. (Basically, he punched me in the stomach.) I saw stars, and the pain was so intense and severe that I nearly collapsed, tears immediately springing to my eyes. Though there was nothing that they, as work-comp doctors, could do, my spleen was incredibly enlarged.

Splenomegaly can be caused by a lot of things; bacterial or viral infections, medications, a myriad of diseases. There’s not a lot of middle ground. Either your cold is making your spleen work double time to cure impurities, or you probably have something seriously wrong with you. The “C” word was thrown around a lot; having lost my father in 2006 to cancer, and watching my mom struggle with it off and on for a lot of my life, I was understandably afraid. Unfortunately, I haven’t had health insurance often here lately, and that’s caused a lot of snag-ups in pin-pointing exactly what it is,  but the most likely cause, in my case, is called Gaucher Disease. It’s relatively uncommon, and is yet another chronic illness. (Why is it that so many of us never seem to have just ONE problem??) As we delved further and further into tests and symptoms, GD became a more and more likely culprit, until it became a tentative diagnosis. My doctor believes it’s what I have, and he’s a pretty smart guy. Because of my insurance issues, I’ve postponed further testing – and here’s why. If it is cancer, forgive me for saying this – but right now, I don’t want to know. I realize that not treating it early is stupid, logically. I know that I’m being uncharacteristically careless about this. But I’m scared, and I am not ready to face that. However, as cancer is the least likely cause, I’m also not pressuring myself into racking up yet more debt to find out.

The fact of the matter is, I have so many symptoms of GD that it’s pretty black and white. I have fragile, imperfectly formed bones – my teeth and fingers, especially, are terribly brittle. I’ve broken all of my fingers – some of them multiple times – and I’ve struggled with dental issues my entire life. My spleen is roughly 9 times the size it should be. When it spasms and swells, I am in terrible pain from the squishing everything inside of me does. Incapacitating pain, even, to the point of constant nausea and vomiting, tremors, and incoherency. My blood platelet count is low, and always has been. The pains in my abdomen were originally diagnosed as kidney stones, and I started having problems with this when I was still in high school. I was actually taken to the hospital for appendicitis a few times, to discover that my blood counts were weird, but not off enough to be that. It’s amazing to me that my crazy spleen wasn’t caught sooner, as much time as I’ve spent in hospitals and doing tests, but the doctor thinks that until recently, it probably wasn’t *constantly* swollen, so when I wasn’t having issues, it would have been hard to detect anything more than a little bit of swelling – easily passed off by whatever infection I was dealing with. GD is caused by a genetic defect in the first chromosome,  which causes the breakdown of an amino acid necessary in controlling the level of fatty lips in cells. Most commonly, this affects the spleen, liver, and bones – however, in type II and III GD, it can affect the brain and neurological systems. On the rare occasional, all three types may experience the symptoms in their lungs. Common symptoms include enlarged liver, grossly enlarged spleen, bone abnormalities include shape, density, and strength, as well as causing the patient to become far more susceptible to Parkinson’s Disease. Though no tests conclude that GD may make a person more prone to cancer in general, it does seem to make them more prone to certain types of cancer, including non- Hodgkin Lymphoma,  melanoma, and pancreatic cancers. Both Parkinson’s and melanoma are very typical in my family, which suggests that there is basis for a GD diagnosis. Though we can’t be positive without (expensive) genetic testing, everything else points to GD. GD is considered “fatal” – but so is life. So far, only very mild decreases in longevity have been observed, and this was usually in people with type II or III, who suffered extensive brain damage due to the disease.

The only good news about the GD “diagnosis”, is that the treatment for it is considered an “orphan drug”. This means that the government recognizes that while treatment is completely necessary for patients with GD, they realize that the market for it is very, very small. The company developing the drug gets complete monopoly on the sale of it, as well as tax breaks – and they are given a 1000 person trial allotment, which means it’s easy to become a guinea pig and have the therapy for free, especially because the rarity of the disease continues to make certain dosing difficult to determine.  The most effective form of treatment is enzyme replacement therapy, which can cost upwards of $550,000 PER YEAR, which would make treating this disease fiscally impossible for most, were it not for that fact. Spleen removal is not uncommon, though usually only used in cases like mine, where the enlargement is actually physically painful. Bone-marrow can be very effective, as well, though it is very, very rarely used to treat GD patients. Sometimes liver transplants become necessary. Currently, an oral drug is being tested. This drug is a “chaperoned” drug, which works at a molecular level.

You know, though – as awful as all of this sounds, it really… isn’t. Would I rather be healthy? Well, of course I would. But when all is said and done, it gives me a better chance to appreciate life. It makes me cherish every day with my family and friends. It makes me pay attention and ENJOY when I’m not in pain, and taught me to rely on others when I am. Whatever is wrong with me, it’s wrong. And it’s kind of lame that, at 23 years old, I know that I will never have the quality of life that my sixteen year old self dreamed about. All things considered, though – I’m happy. I’m lucky. I’ve had a few bad days here lately, and I’m frustrated with them, but writing this – reliving my life… has helped. It’s helped me to remember, when it’s so easy to forget. I love me, and I love most things about me. I don’t love that my body hates me, but it hates itself to. We’re in a partnership, and I’ll keep doing what it takes to keep me healthy, and maybe we’ll find some common ground

So, I am going to start a project. No matter how tired and anti-social I get (which is possible, I’m struggling with my Bipolar these days), I am going to come on here, and tell you all what I’m thankful for – even if all it is is having SOMETHING to whine about, so that I can get it off my chest. Today, I am thankful for Lala. Because she is living proof that people still exist with pure souls. Her happiness is contagious, and she always puts a smile on my face… even when I am being completely neurotic. I am also thankful that my bestie, Sarah, will be here this weekend and I can get a much-needed hug from my favorite person. I’m so excited to see her!

Until next time – with all of my hope, love, and trust,

Kitten