When I hear people use words like "hydrocephalic" or "epileptic" as a noun, it makes my skin crawl. This is a means of labeling that, to me, is incredibly self-limiting. Maybe I feel that way because I haven't had serious problems with either condition, but it just seems that it means that's all we are. I am a wife, mother, daughter, sister, friend, and "amateur" advocate. In terms of its overall impact on my life, it actually ranks fairly low. I do have ongoing effects that most others do--memory, concentration, and other common deficits--but I have so much to keep me busy that thinking of myself as defined by my conditions drags me down and leaves me with no energy to deal with everything I have to, so there's no time for it, plain and simple. How much better would we all feel if we looked at it that way?
I have noticed that I say my son is "autistic," and of course, that sounds hypocritical, but I was very uncomfortable with it for a long time and actually refused to say it until I was actually corrected by some adults at an autism conference. They explained that there is no way to separate who they are from their autism, and therefore, it is completely okay, and even preferable to them, to be referred to as autistic. I would eventually come to see that in the way they talked and thought. There actually is an "autistic" way of thinking. It's very literal and "black and white," unlike my thinking is with hydro and epilepsy, which is much broader and more "neurotypical."
UGH...there's another word I grapple with: "neurotypical." To some, it means "normal." To others, it means "not ______ (whatever they're talking about)," but it has mostly come to mean, in my online roamings, "not autistic."
Okay, so I'm not autistic, but "neurotypical"?? Surely, you jest!! I think not! Hydro comes with its own idiosyncratic way of thinking, to some degree, but not in as limited a way as autism. This is especially true with Nonverbal Learning Disorder, which is a very common effect of hydro, and of which I have some slight shades. The difference is that I know that not everyone thinks the way I do, and yeah, I know it's weird. Most autistic adults have told me that they don't have that ability.
So, if we have more prominent NLD, are we more able to see ourselves as "hydrocephalics"? I'm interested in any and all input. :)
Sunday, January 30, 2011
Saturday, January 29, 2011
So...now some about me
As I said, I had toyed with the idea of blogging for awhile, but what about? Generally, a blog is a "slice of life," but what about my life would interest anyone? Yeah, I have a weird medical condition that few people know about, but I know thousands of others who do, too, and so many of them have been through a lot worse than I have. I didn't want to write a "brag," so...where to go with it?
I decided to go with what I have done in the online forums I have participated in for the past nearly 20 years. I have used my experience to encourage others who are new to dealing with hydro, and it seems to be working. It's always rewarding to hear someone say that I made them feel optimistic that their child would do well, or that life can get better. After all, I had a rough start myself--five surgeries before kindergarten, a shunt infection, and some seizures that would later be diagnosed as epilepsy.
I know that this is not unique, either, and I am very fortunate to be doing well with both conditions. I actually have "some of this, and some of that," which, in a lot of ways, has been just as stressful. I would get my brain around one issue and then be hit with another one. They have come in a steady stream in my adulthood, too. After a harrowing battle with a severe reaction to an epilepsy medication in college, I learned that not all doctors work for the good of their patients. Some put ego ahead of it, and after several negative experiences with neurologists, I decided that my neurosurgeon, who had initially put me on epilepsy medication, could handle that, too. I haven't looked back since.
That experience would give me tools for what was ahead. I would (somehow) go on to graduate from college, marry, and have two great kids, but my naivete about being able to put my limited energy into dealing with my own medical matters would be shattered with my son's autism diagnosis in January of 1997. Again, it's just enough to make me work my tail off to help him help himself, and we are succeeding, but there was more to come.
I had always been concerned about his rapid head growth as an infant and had watched him closely for any signs of hydro, although I knew it generally wasn't genetic. We finally decided to get an MRI of his head and neck, and I would learn all about something I was only vaguely familiar with then: Chiari Malformation. He had a 13 millimeter herniation, which is significant. I thought surgery was always necessary for this, the herniation of the brain's cerebellar tonsils, but when I rushed him to my neurosurgeon, I learned that there was no compression of the brainstem, and we would just have to monitor it over time. He might never need surgery, I was assured, and so far, after 10 years, that has been the case.
God wasn't done with me yet. When my daughter was eleven, she began to have what we thought were asthma attacks. They were exhausting and necessitated a nap afterward. Further exploration would uncover an arrhythmia, which was treated with a beta blocker and later found to require a cardiac ablation, which would stop the "short circuiting" of the blood flow and lead to normal circulation (and oxygenation) of the blood, stopping the palpitations and other symptoms.
Now my family was doing well, so why not something else to deal with? Just after my 40th birthday, I began to notice a rapid onset of many symptoms that would lead to a diagnosis of hypothyroid. That got under control, and then my vitamin D was found to be nearly zero, which accounted for the severe exhaustion, joint stiffness and fibromyalgia-like muscle pain I was having that was so bad, I could hardly get out of bed. After this had improved with aggressive D therapy, I was found to have Celiac Disease.
That was the biggest shock. After all, I did not fit the "profile" at all. I was (and still am) very heavy and not experiencing the classic diarrhea, nausea, and vomiting I'd heard about. How could I have Celiac??
I began learning about gluten-free eating and discovered that my blood sugar, which had been low my whole life and getting much worse in the previous year or so, became normal for the first time in my life once I learned to stop eating gluten!! The remaining joint pain and fatigue started to let up, and for three months, I felt like a new person.
Then I began to have more symptoms. My sleep became disturbed, I constantly--and I mean constantly--craved sugar. I itched uncontrollably and began to develop athlete's foot and thrush. Then I knew...I had the dreaded Candida. This is the rampant yeast overgrowth from years and years of antibiotic or birth control pill use. I am under treatment and feel considerably better now, but I can't do this horrifically difficult diet, so I have increased my probiotics to twice a day and have a quart of plain fat-free yogurt every day, which is helping. However, I still have to take med for sleep, and there is a LOT of weight to get rid of, in spite of the fact that I don't eat a lot.
So, I mentioned that every one in the house has had a medical odyssey and still hadn't talked about my husband. He was born with a visual defect, coloboma, which compromised--basically made nonexistent--his depth perception and left him with a very high risk of detached retina. We didn't know until just over two years ago just how much a risk he had, but when he suddenly started having issues with the little vision he had in his affected eye, he went immediately to the eye doctor and was found to have not only detached retina, but a cataract as well. Four surgeries and months of frustration with Drew's behavior would follow because Daddy couldn't take him anywhere, but he is now about 99% recovered, and we thank God. He also has sleep apnea, which is treated with a CPAP (after months of threats from me to divorce him because his incessant foghorn-like snoring kept me from getting more than 2-3 hours of sleep a night).
People have said (chirped, actually), "God never gives you more than you can handle," and I have vowed to punch the next one who says it to me, but I do believe that everything happens for a reason, and that what doesn't kill you makes you stronger. I have found that to be true in my life and can say that I'm actually glad for my experiences because I know that they have made me who I am, and that ain't so bad. :)
I decided to go with what I have done in the online forums I have participated in for the past nearly 20 years. I have used my experience to encourage others who are new to dealing with hydro, and it seems to be working. It's always rewarding to hear someone say that I made them feel optimistic that their child would do well, or that life can get better. After all, I had a rough start myself--five surgeries before kindergarten, a shunt infection, and some seizures that would later be diagnosed as epilepsy.
I know that this is not unique, either, and I am very fortunate to be doing well with both conditions. I actually have "some of this, and some of that," which, in a lot of ways, has been just as stressful. I would get my brain around one issue and then be hit with another one. They have come in a steady stream in my adulthood, too. After a harrowing battle with a severe reaction to an epilepsy medication in college, I learned that not all doctors work for the good of their patients. Some put ego ahead of it, and after several negative experiences with neurologists, I decided that my neurosurgeon, who had initially put me on epilepsy medication, could handle that, too. I haven't looked back since.
That experience would give me tools for what was ahead. I would (somehow) go on to graduate from college, marry, and have two great kids, but my naivete about being able to put my limited energy into dealing with my own medical matters would be shattered with my son's autism diagnosis in January of 1997. Again, it's just enough to make me work my tail off to help him help himself, and we are succeeding, but there was more to come.
I had always been concerned about his rapid head growth as an infant and had watched him closely for any signs of hydro, although I knew it generally wasn't genetic. We finally decided to get an MRI of his head and neck, and I would learn all about something I was only vaguely familiar with then: Chiari Malformation. He had a 13 millimeter herniation, which is significant. I thought surgery was always necessary for this, the herniation of the brain's cerebellar tonsils, but when I rushed him to my neurosurgeon, I learned that there was no compression of the brainstem, and we would just have to monitor it over time. He might never need surgery, I was assured, and so far, after 10 years, that has been the case.
God wasn't done with me yet. When my daughter was eleven, she began to have what we thought were asthma attacks. They were exhausting and necessitated a nap afterward. Further exploration would uncover an arrhythmia, which was treated with a beta blocker and later found to require a cardiac ablation, which would stop the "short circuiting" of the blood flow and lead to normal circulation (and oxygenation) of the blood, stopping the palpitations and other symptoms.
Now my family was doing well, so why not something else to deal with? Just after my 40th birthday, I began to notice a rapid onset of many symptoms that would lead to a diagnosis of hypothyroid. That got under control, and then my vitamin D was found to be nearly zero, which accounted for the severe exhaustion, joint stiffness and fibromyalgia-like muscle pain I was having that was so bad, I could hardly get out of bed. After this had improved with aggressive D therapy, I was found to have Celiac Disease.
That was the biggest shock. After all, I did not fit the "profile" at all. I was (and still am) very heavy and not experiencing the classic diarrhea, nausea, and vomiting I'd heard about. How could I have Celiac??
I began learning about gluten-free eating and discovered that my blood sugar, which had been low my whole life and getting much worse in the previous year or so, became normal for the first time in my life once I learned to stop eating gluten!! The remaining joint pain and fatigue started to let up, and for three months, I felt like a new person.
Then I began to have more symptoms. My sleep became disturbed, I constantly--and I mean constantly--craved sugar. I itched uncontrollably and began to develop athlete's foot and thrush. Then I knew...I had the dreaded Candida. This is the rampant yeast overgrowth from years and years of antibiotic or birth control pill use. I am under treatment and feel considerably better now, but I can't do this horrifically difficult diet, so I have increased my probiotics to twice a day and have a quart of plain fat-free yogurt every day, which is helping. However, I still have to take med for sleep, and there is a LOT of weight to get rid of, in spite of the fact that I don't eat a lot.
So, I mentioned that every one in the house has had a medical odyssey and still hadn't talked about my husband. He was born with a visual defect, coloboma, which compromised--basically made nonexistent--his depth perception and left him with a very high risk of detached retina. We didn't know until just over two years ago just how much a risk he had, but when he suddenly started having issues with the little vision he had in his affected eye, he went immediately to the eye doctor and was found to have not only detached retina, but a cataract as well. Four surgeries and months of frustration with Drew's behavior would follow because Daddy couldn't take him anywhere, but he is now about 99% recovered, and we thank God. He also has sleep apnea, which is treated with a CPAP (after months of threats from me to divorce him because his incessant foghorn-like snoring kept me from getting more than 2-3 hours of sleep a night).
People have said (chirped, actually), "God never gives you more than you can handle," and I have vowed to punch the next one who says it to me, but I do believe that everything happens for a reason, and that what doesn't kill you makes you stronger. I have found that to be true in my life and can say that I'm actually glad for my experiences because I know that they have made me who I am, and that ain't so bad. :)
Friday, January 28, 2011
Who I am, what I'm about, and why I have started this blog...
My name is Liz. I am a 40-something mom who has learned a lot in life and feel compelled to share. I got inspired to start blogging awhile ago. Over three years ago, I lost a good friend very suddenly. Gina was only two months older than I was when she suddenly collapsed and died. She was alone at the time, and we think now that she was dead for about two days before she was found. She was 41 and was staying at her parents' summer home in Delaware (although it was October then). Her father was doing a lot of remodeling of their house in Baltimore, and it was just easier for her to stay in Delaware while he worked on the other house. Her parents had planned to surprise her with a completely redecorated bedroom when she got back, and because she was disabled and unable to drive, they checked on her every weekend.
She'd been having problems with her asthma for several months, and they were concerned about having her stay alone, but she apparently insisted she'd be okay. We talked on the phone--and ran up horrendous bills, which her parents paid in full without complaint--chatted on the computer, and kept in constant touch.
Then I tried calling her one day, and she didn't pick up. Surprised, I figured she'd call right back, as she always did. When she didn't, I thought she might have gone back to the hospital and that I'd hear from her in a few days.
Then I got an e-mail from her account with her name in the "from" and "subject" lines. I thought this was odd and was immediately concerned...and then stunned and distraught as I read from her brother that she'd been found dead, next to her bed, holding her nebulizer.
Gina and I had become friends because of some health issues we shared. I don't have asthma, but she and I both had hydrocephalus and epilepsy and ran an online support group together.
Hydrocephalus. What a word! How does it roll so easily off my fingertips? I know it's a big word, and most people have no clue how to say it or what it means. This is the proper name for the chronic buildup of fluid inside the brain. There is no cure, only treatment, and the treatment is surgical. The shunt--a thin, flexible catheter that drains the fluid constantly--is a man-made device that breaks down over time and needs to be periodically replaced, in whole or in part. One end of the tube is inserted into the ventricle (the pathway through which the fluid would normally circulate) and probed down into the peritoneal cavity near the stomach so the fluid can drain and is absorbed into the bloodstream. Both Gina and I had been diagnosed with "hydro," as we called it, when we were infants, and we had both had about a half dozen shunt surgeries. I would later learn that she had a very large porencephalic cyst. The cyst consumed about a third of the space on her CT scans and MRIs.
While she was doing well with her hydro, Gina continued to have problems with her asthma and spinal stenosis, which is a constriction of the spinal cord. Her epilepsy was also an ongoing issue. We have since learned that her death resulted from a "complete simultaneous shutdown of [her major] systems." Even now, I have questions, and I know they'll probably never be answered, but I want the world to know she existed and carry on the advocacy work she started. I hope I can make her proud.
She'd been having problems with her asthma for several months, and they were concerned about having her stay alone, but she apparently insisted she'd be okay. We talked on the phone--and ran up horrendous bills, which her parents paid in full without complaint--chatted on the computer, and kept in constant touch.
Then I tried calling her one day, and she didn't pick up. Surprised, I figured she'd call right back, as she always did. When she didn't, I thought she might have gone back to the hospital and that I'd hear from her in a few days.
Then I got an e-mail from her account with her name in the "from" and "subject" lines. I thought this was odd and was immediately concerned...and then stunned and distraught as I read from her brother that she'd been found dead, next to her bed, holding her nebulizer.
Gina and I had become friends because of some health issues we shared. I don't have asthma, but she and I both had hydrocephalus and epilepsy and ran an online support group together.
Hydrocephalus. What a word! How does it roll so easily off my fingertips? I know it's a big word, and most people have no clue how to say it or what it means. This is the proper name for the chronic buildup of fluid inside the brain. There is no cure, only treatment, and the treatment is surgical. The shunt--a thin, flexible catheter that drains the fluid constantly--is a man-made device that breaks down over time and needs to be periodically replaced, in whole or in part. One end of the tube is inserted into the ventricle (the pathway through which the fluid would normally circulate) and probed down into the peritoneal cavity near the stomach so the fluid can drain and is absorbed into the bloodstream. Both Gina and I had been diagnosed with "hydro," as we called it, when we were infants, and we had both had about a half dozen shunt surgeries. I would later learn that she had a very large porencephalic cyst. The cyst consumed about a third of the space on her CT scans and MRIs.
While she was doing well with her hydro, Gina continued to have problems with her asthma and spinal stenosis, which is a constriction of the spinal cord. Her epilepsy was also an ongoing issue. We have since learned that her death resulted from a "complete simultaneous shutdown of [her major] systems." Even now, I have questions, and I know they'll probably never be answered, but I want the world to know she existed and carry on the advocacy work she started. I hope I can make her proud.
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