Some background info:
It started Saturday, January 16th, 2010.
I'll probably never forget that date.
We went to see Avatar with our neighbors at lunch. I ate a mediocre soft pretzel in the movie theater. That evening, we picked up my mother-in-law from the train station and went out to dinner at an Italian restaurant, Venice Ristorante, across the street from Union Station. I had chocolate covered profiteroles (I had already eaten dinner at home) and they were delicious.
But as the evening progressed, so did the pins and needles sensation I felt in my right leg. It felt like it was falling asleep, so I kept shifting position to try and get the blood back to my foot. It was bothering me, and was starting to suspect if the spinal "manipulation" I had done a few days earlier at a DO's office had anything to do with it. It got progressively worse throughout the weekend, and started to affect my right hand and arm as well.
I already had an appointment to see the DO again on Monday, and by then, the pins and needles feeling in my right arm and leg was pretty intense and I was pretty freaked out.
Anyway, the story just continues downhill from here. I saw the DO a few more times and had a few more manipulations, but it did not relieve the tingling. With the tingling came numbness. The DO gave me muscle relaxants and a referral to a hand surgeon who wanted to operate on my ulnar nerve at the elbow. I then went to my MD, who took an X-ray of my neck, and then referred me to a physical therapist.
When the numbness spread up from my right arm to the right side of my face, I called the MD back. He sent me for an MRI of my neck and brain ASAP. Tedious few days of waiting, then I hear it's all normal. I get a referral to a neurologist. I am prescribed an anti-seizure medication to help relieve the symptoms.
At this point, it's March. The numbness and tingling have not gone away, and continue to spread. It's over my entire body now, with it being worse on my right side. No one has any answers for me. The neurologist runs all his tests, and I pass them. In April, it's still not any better. So I am sent for a spinal tap. Or as they are called now, a "lumbar puncture". While I am on the table under the flouroscope with a huge needle in my spine, the nurse bumps the table and I feel the needle wiggle. Not surprisingly, the hole in my dural sac does not seal and I leak cerebral spinal fluid for a week before I am sent back to the hospital for a blood patch (a medical "fix-a-flat" procedure to plug the hole and stop the leak). Although now I have an appreciation for what a "spinal headache" feels like, I still didn't have any answers as to what is going on.
Next test - nerve conductivity. This treat sends electric shocks from electrodes placed on various fingers and measures the nerves' responses. Mine are fine.
The physical therapist doesn't find anything mechanically wrong with me. No pinched nerves.
Neurologist can't find anything either. DO had given up months before. MD considers the possibility I may have had a stroke, so I get an angiogram. No stroke. This is now June.
I see a chiropractor who treats me with "cold lasers". I see an acupuncturist who tries to desensitize my body to viruses I have been exposed to in my lifetime with vials of programmed water and pressure points.
I am told not to get stressed out. I am told to take vitamin C, get lots of rest, and stay calm.
Then it's September. I have been numb and tingly for 8 months. I keep getting sick. I have had more colds and flus in this time frame than I have had in the last 10 years. I have a virus come back and cause pre-cancerous changes all up in my personal business, which I have to have surgically excised. The neurologist decides that because my immune system is obviously weakened, it must have been a virus that infected my nervous system and that my body is still trying to fight off.
Of course we don't know what insidious little asshole virus did this to me, but I can tell you how much I hate it. I hate everything about it. I hate how scared and vulnerable it made me. I hate how scared and vulnerable I was and how hard I kept working at my job just trying to ignore the pain and stress all the tests and uncertainty were causing me. I hate that I could feel it moving through my nerves, leaving numbness behind. I hate how sensitive to cold it made me. Sticking my hands in ice to keep milk samples cold for work was like agony. It's still like agony to be cold. I hate how expensive all these tests were. I hate that I had to go through them all and find out nothing. I hate this virus more than I have ever hated anything before. I hate that I still feel it in me.
But this virus is what made me realize how impermanent my place here on Earth is. Now more than ever, I want to accomplish things. I no longer fear failure as much (I still do a little, but I'm a perfectionist). For fuck's sake, I've had two needles in my spine. What's scarier than that?
Since I have added this page I have been conflicted - I couldn't decide if I wanted to leave it posted as my explanation for this blog's existence or remove it because it's so personal and no one really wants to read about someone's illness or medical experiences anyway.
But I decided to leave it, with this explanation to the explanation.
I have been desperately trying to make this experience have meaning to me. It was too profoundly terrible to just go through and be done with. It affected me in so many different ways that I am still sorting through them. I am still numb in spots (sometimes worse than other times), and my foot still tingles almost constantly as a not-so-subtle reminder that the virus is still there doing whatever evil it does.
Obviously, this experience has shown me the physical effects that emotional stress has on one's body. My tingles and numbness are always worse when I am tired, upset, stressed, angry, or experiencing some other strong emotion. My immune system has crashed. My insomnia is ridiculous. I sometimes have to take a pharmacy's worth of pills to get to sleep. A-hole virus has revealed that I must take care of my emotional needs so that my physical self can function.
But more importantly, it has made me aware of how much I live my life in my "only-child bubble". This bubble keeps me safe. I had great friends growing up (and now), but I have always been comfortably independent and learned to rely on myself for whatever I needed. I can take care of myself. I don't need anyone else. I don't mean this to sound harsh, but it's my bubble and I've always had it, and I like it. It's comfortable. Reaching out to others through this bubble is not second-nature, and it's scary.
But I can't drive myself home from a lumbar puncture. I would prefer someone to hold my hand as they cut out the abnormal cells. I started to learn to ask for help without feeling raw and exposed. And once I am raw and exposed, I need to learn that it's OK. There are people there who love me without my bubble. Safe people.
So this explanation is a reminder that it's OK to be exposed sometimes. So there - you have seen through my bubble.
I'm still keeping it though. I love my bubble. And I still love profiteroles. :-)