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. :)