I am a special kind of expert in the medical field. I’m not a doctor, nor did I study medicine… ever. I can’t diagnose other people of their ailments, or offer medical advice… heck I doubt I could even pass as a “natural healer”. But there is one person that I can diagnose, find treatment for, and take care of better than anyone else. I am the only expert with this kind of inside knowledge – making me the best in the world. I am the expert on me, and my body. And while it has taken me nearly thirty years, I have learned to listen, when my body tells me something.
I often make jokes at my body’s expense. I call is “attention seeking” and often comment that my body hates me (for the record, it does), and really, it’s not like I’m the only one who makes such statements. Whenever I am sick I am “bullied” by my husband and a doctor (usually my hematologist/oncologist, but sometimes my nephrologist or cardiologist or neurosurgeon – I guess it’s more like a rotational thing) to go to the emergency room. (Seriously last time this happened was at the end of October. I am still calling my husband a drama queen over the whole thing.) And when I get to the hospital you can see the stages of “oh shit” as I call them on ever nurse’s and resident’s face as they go through my chart. They never even make it to my last date of death: July 28, 2009 (also my 25th birthday, and you know what, that wasn’t even my most traumatic birthday, but I am getting off topic). They thank my husband for bringing me and hover, checking on me way more than other patients, way more than they need to. And they say quietly so I cannot hear, “He’s a very vulnerable adult.” And I can’t hear them, but I can read lips.
People probably think that I was born this way – with this slew of medical problems. But I wasn’t. I was only born with two, and one of them wasn’t even detected until I was ten: Osteo Genesis Imperfecta (brittle bones, the same disease Samuel Jackson had in the movie Unbreakable and April and Jackson lost their baby to on Grey’s Anatomy) and Aortic Valve Insufficiency (the main pump in my heart was missing a flap so my heart had to work harder and leaked a lot of blood – this was what was caught later). These are the problems nature and the universe decided I should have from the get go, and everything else came later.
My heart issues progressed and I needed my first heart surgery when I was thirteen. But it didn’t go so well, so I had a second one right after my first. And then two days later I was discharged because by then I knew how to be the model patient (yes it was open heart surgery, and my breast bone was snapped in half for it, but what could they do for that in the hospital besides dope me up, which I wouldn’t let them anyway). They put in a donor valve but my body really didn’t like it and what should have lasted twelve years lasted five and I needed surgery again due to black outs, more leakage and stenosis. Thankfully more than ten years later and the new valve they put in is still working (they put in a different type, hoping my body would be less likely to reject it, no not mechanical because I cannot be on blood thinners due to another medical problem).
And my bones, well really the story with that is I have probably broken every bone there is to break (arms, legs, ankles, feet, wrists, toes, fingers, ribs, vertebrae, tailbone, collarbone, skull, and I know I am leaving some out –oh wait! I have yet to break a hip, that’s something 🙂 ), more than once. As a kid I probably averaged four fractures a year, some requiring surgeries. And I didn’t even play sports! By the eighth grade my doctors no longer wanted me to participate in gym class. (Thank God, I only had one year of awkward locker room experiences.) Oh, and my bone disease also led to my eventual deafness (I am profoundly deaf, which is due in large part because of the bones in my ear, a common “extra” of my bone disease).
When I was an infant I was violently shaken causing a brain hemorrhage that should have killed me or severely “limited me”. That was what my parents were told. I should not have made it to the hospital, and I was in a coma for awhile, but I pulled through. I didn’t speak and could only scoot for the next year when suddenly I stopped breathing and it was more surgery. It turned out my brain bleed while corrected caused me to develop hydrocephalus (water on the brain) so they put a VP shunt in my brain to drain excess spinal fluid. Unfortunately my body has never appreciated this “fix” and I have had more than four dozen brain surgeries (shunt revisions) since to fix a malfunctioning shunt or pressurization issue. My body has become shunt dependent (can only survive a few hours without a working one) and my ventricles became rigid (Slit Ventricle Syndrome, because they look like slits in CT scans, less than 1% of people) so all of the tests that are used to say a shunt is malfunctioning really don’t work on me (CT scans, MRIs, etc.) because what they pay attention to are the ventricles in the brain and what they should be doing if a shunt is broken. So anytime it is broken, my doctors have to defer to me, they trust me. (That is if I am still able to speak, I guess the good thing about being shunt dependent is that 90% of the malfunctions put me in a comatose state after I cry “Shunt!” So they kind of know for sure, and then rush me into surgery.)
All of the brain surgeries kind of left me open for other neurological hiccups. I was diagnosed with epilepsy as a child, though I am certain this diagnosis is wrong. Many neurologists since are split down the middle. Some say I had epilepsy (which does run in the family) and others say I simply had seizure spiking activity, which does not necessarily mean a seizure disorder. And I used to have a lot of petite mal seizures and like three or four bigger seizures, before 2009. And in 2009, I had a fever of 109 degrees (over 109, actually) which caused me to have several grand mal seizures, but that was due to the fever, not a questionable seizure disorder. Oh, I also had several severe strokes because of the fever too. (Technically it was a combination of seizures, strokes and head trauma that killed me on my 25th birthday, or maybe the fever, I don’t know what they would have actually listed as cause of death if I had stayed dead. But you know that no one revived me. I came to after they gave up because apparently if anyone is going to bring me back, it is going to be me. Yeah, I’m a bitch like that.)
Later it turned out that the fever was caused by a rare bacterial infection of my artificial valve and so it was special drug combos every day in an infusion center for months. But my body wasn’t done yet. A few months after that incident my kidneys failed. It turned out I had my rarest thing yet, an autoimmune disease called Goodpasture’s Syndrome (it affects one out of every two million people, better than one in a million bitches). Of course, in the ER a nurse who had been there the day I died and followed my case a few months earlier, shook her head at me once I was diagnosed. “I swear you get the strangest things.” She said. “Only you.”
So a year of dialysis, drug protocols, chemo, and plasma exchanges followed, as well as trying to get on a transplant list. Oh the disease also affected my lungs, which still have a little fluid in them. And of course out of that treatment sparked even more problems, some of which were a result from chemo and others simply caught at the same time because they did so many tests, including invasive ones (spinal tap, anyone?) that anything I currently had, even if it wasn’t affecting me, was found (this is not an invitation to get anything else by the way, please Universe, I’m good). These included four blood mutations, a rare skin condition (now gone or in remission or whatever) caused by the chemo that made me look like a burn victim, I won’t get into the details, but it was seriously gross and fatal, Gastro paresis (my stomach does not empty, I live in constant stomach pain, and I am an expert in vomit), and a bone marrow disorder. Also, a blood pressure that likes to suddenly bottom out, but I don’t know if this is a formal condition or just a side effect from dialysis and blood treatments, but it isn’t cool.
And that is essentially my medical resume, minus surgeries and procedures, because otherwise this post would be four times as long (not even exaggerating a little here). I’ve worked hard to be an expert on my body. Not with actual work, but the whole experience and living through thing. Best teachers ever.
I’m very in tune with myself and know when something is wrong, before it’s caught. I know when I need another blood treatment before my labs are in. I know if I am feeling terrible, what the culprit is. (Because even being sick, or just a little rundown causes a crazy domino effect in my body and makes everything angry, I guess that is what happens when you have my kind of medical resume.) When I get something new (like my bone marrow disorder, not diagnosed until 2014) it takes me awhile to get used to it. Anywhere from three to six months. And then it takes another six months to feel confident in knowing my body and this particular problem, even though tests show me that I wasn’t crazy and really did “get it”. But after that I’m good. And I know. And I let everyone else know.
I think people with less experience are not used to handling doctors. Some doctors want to go to the easiest thing. Others simply think they know better than you. And others are great, and actually know the most important thing: when it comes to YOUR body, YOU are the expert. And that expertise is worth way more than their schooling and medical degrees. Even if you don’t have a lot of complicated medical issues, if you tune into what your body is saying, you know when something is up. And you can usually have a good idea as far as what that something is.
Sometimes this means standing firm and being your own advocate. It’s funny that my medical experiences have made me a bigger hard ass than my actual activism experiences have. But it’s these experiences that have helped me learn how to be an advocate, for myself and others.
And there you have it. I have blogged about some of these issues and experiences before, but never given the full picture/back story because, well, it’s kind of involved. At the same time I’ve learned to appreciate my experiences and how they have shaped me. You would never know just by looking at me that I have even one thing I have described let alone all of them. But here they are, laid out in a condensed and oversimplified way, but appropriate for my purposes.
This resume of sorts is the only thing I need as proof of my expertise. Anyone who wants to say otherwise is fighting a battle they will surely lose. And everyone reading this is also an expert in the same way, whether they know it or not.
-DMW
