My mom and IVIG

My mother
My mother's name is Angelica Ramirez Zuniga. To quote my father, "She doesn't have a bad bone in her body." I completely agree.

Her Illness
Her symptoms began to appear toward the end of my senior year of high school (May of 1992) and grew progressively worse through the summer. My first visit home from college (for Christmas) consisted of a three hour drive to a hospital in San Antonio with my mother in the back seat. I can't find the words to describe the experience-- I imagine it might be akin to sitting in a car with a woman who is giving birth. Only in this case, we did not know why my mother was in so much pain nor did we know if there would ever be an end to it. We were helpless as we watched her convulse from the torture of her muscle spasms, beads of sweat soaking through her clothes.

Doctors had no idea what was wrong with her. Specialists of all sorts worked to treat her symptoms-- muscles cramping so strongly that her knee had fractured, an inability to bend her limbs on demand, pain...

Although the treatment her doctors were able to fashion together reduced the pain she experienced, it was not able to restore any independence. My mother could not bathe herself, take herself to the restroom, or even turn herself in bed.

After my Freshman finals (June 1993), I got a call from my father. "Mija-- You have to come home quick." My mother was in the hospital and had been given only a 10-12% chance of recovery. He related what the doctors had said-- One of the medications that had been prescribed to handle her symptoms required liver function monitoring; Unfortunately, my parents had not been told and my mother's liver had begun to deteriorate and was dangerously close to failing.
With a removal of the medication, great hospital care, and liver transplant teams at the ready, my mother's own liver stopped deteriorating and fully recovered. But this meant that treating the symptoms as completely separate entities was no longer an option.

In 1997, a local clinic began hosting a neurologist who would visit our small home town a few days out of the week. Although this condition is very rare and he had never seen it before, he was able to diagnose my mother and we finally had a name to work with-- Stiff Man Syndrome.

Her diagnosis, Stiff Man Syndrome
To quote the National Institute of Neurological Disorders and Stroke,

Stiff Man Syndrome (Stiff Person Syndrome) is a rare neurological disorder ... that is characterized by fluctuating muscle rigidity in the trunk and limbs and a heightened sensitivity to stimuli such as noise, touch, and emotional distress which can set off muscle spasms.

Newly armed with a correct diagnosis, we were able to find a neurologist who had experience with her illness. Although the doctor we found lives and works 7 hours away from my parents' home town, the visits made to her office have been worth the long trek.

Her Treatment, IVIg
The treatment my mother receives is called Immunotherapy. According to NINDS,

An immunologic therapy, intravenous immunoglobulin (IVIg), administered to patients suffering from stiff person syndrome (SPS), provides dramatic relief from disabling symptoms, according to a study appearing in the December 27, 2001, issue of The New England Journal of Medicine .

Over time, the treatments administered have given my mother a new lease on life; The improvements brought about have been substantial. Her balance has improved and her stiffness has waned more and more each year. Now she has the ability to participate in many regular daily activities that many of us take for granted. I'm sure you can imagine how grateful she is to again have the ability to dress without assistance, to use the ladies facilities in complete privacy, to bend her legs on demand, .... Can you imagine the joy she experienced recently, when for the first time in 15 years, she was able to drive again? (Pictured above is a "first in 15 years" I was able to enjoy with her over a summer visit in 2006. I still get sappy thinking about excited and happy she was to be able to join me for a simple swim.)

Her Predicament, MediCare
In 2005, the Centers for Medicare & Medicaid Services (CMS) lowered the payment rate for IVIg. This new payment rate makes it financially prohibitive for health care providers to administer IVIg since the costs for purchasing IVIg exceed what CMS will reimburse.

Since it is illegal for a health care provider that accepts MediCare to charge more for a treatment than what CMS has agreed to pay, there is no way that a health care provider can recoup the uncovered costs associated with treating MediCare IVIg patients. Understandably as a result, many treatment centers that administer IVIg will not accept MediCare.

On December 1st of 2007, my mother will turn 65. Whether she wants it or not, MediCare will become her primary insurance provider. IVIg transfusion centers that accept her current insurance will not (can not) accept MediCare.

Any CMS cost savings generated by patients not having access to IVIg treatment would transform into different and possibly more costs down the road. For example, anyone in my mother's position could need up to 24-hour assistance. And who's to know the health toll that the physical requirements of assisting another and the emotional strain involved in watching a loved one suffer can have on one's life partner?

Personally -- after so many years of witnessing my mother's progressive improvement, I cannot stomach the idea of her losing access to this treatment. I am worried not only for the health of my mother, but for my entire family.

A Possible Solution, petition to Congress
The Immune Deficiency Foundation (IDF) is advocating for people who require access to IVIg. According to a recent release, IDF has so far been able to temporarily stop further reductions for IVIg MediCare payments.

IDF (and now I) request that if you care about patients receiving required treatment, please write to your representative about this issue. IDF has put together a site to facilitate this process-- with a few clicks, you can find your representatives and generate a letter to send either via e-mail or snail mail.

Thank you for taking the time to read this. -elsa

Anthropomorphizing

I read blink not too long ago. In it was a reference to an experiment conducted at Yale by a Robert T. Schultz, where it was found that facial recognition is impaired in autism.

The study used functional magnetic resonance imagery (FMRI) to determine what parts of partipants' brains were used when distinguishing between two faces and distinguishing between two objects.

The findings identified an interesting difference between non-autistic and autistic participants.

• When a non-austic participant tried to determine if two images were of the same face or of two different faces, they utilized a part of their brain called the fusiform gyrus. When they performed the same task on two objects, they used a different part of their brain-- the inferior temporal gyrus.
• One could not tell which of the two tasks an autistic participant was performing by looking at their brain. In both cases, autistic participants utilized the part of their brain that the non-autistic participants used for objects alone, the inferior temporal gyrus.

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Recently, I've been thinking more about this experiment.

On a return home a few weeks ago, Christian and I noticed the front door to our apartment was wide open. As we cautiously made our way in and down the hall, I caught sight of what appeared to be a little critter scuttling into our living room. I hadn't had time to determine what the little critter was, but I had been able to see that it was four legged and mostly black.

Although we were nervous that the neighborhood skunk we'd been admiring had made its way into our living space, we cautiously turned on the light and hoped for the best.

To our surprise, crouching in the middle of the room was a beautiful black cat.

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After a brief moment, the cat ran out of the room, past us, to the now closed door. Upon seeing the door was shut, he turned around -- it appeared he was about to run back to where we'd found him. I blocked the entrance to the living room and instructed Christian to open the front door and stand outside so there would be nothing between the cat and his way out.

Since the cat had been watching me the whole time, he hadn't see that the previously closed front door was open once again. He stood there, frozen, looking straight up at me. After what seemed like a minute, he let out this pitiful yowl. I took a slow step toward him which was enough to get him to turn around, see his escape route, and make a run for it.

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Why would this incident conjur up thoughts of the blink-referenced experiment?

Because I've been thinking about the way I think about the experience. I remember the expression on the poor cat's face, his whole demeanor in response to getting "caught", to being in an uncomfortable position. Seeing the predicament he was in, my heart went out to him...

Normally I would just chalk this up to my tendency to anthropomorphize. But what if it's that some of us are "autistic" when it comes to relating to animals, and some of us aren't? In other words, what if when interpreting animal behavior some people are in one mode (object-interpreting) while others are in another (human-interpreting)?

Would this help explain why some people are animal lovers and others aren't? Or why some people have a natural tendency to attribute human characteristics to non-human beings ? Or why I grew up with every member of my family rolling their eyes whenever I enthusiastically raved about my awesome, awesome pet dog? :)

Driving glasses

I propose that SUV's be made entirely of glass.

Although the driveway on which I park my car is not a "blind drive" by design, I've found that it can be easily modified into one with the addition of SUV's.

An SUV flanking each side of the exit makes it literally impossible for an egressor to view traffic, coming or going. The car visibility shadow cast by an SUV is so wide that up to three cars can approach the poor driver's trunk in the time it may take him to clear it.

Any sort of translucence could solve my problem. I only propose glass because the additional trait of frailty may provide some extra benefits:

1. Less horn honking. "He who lives in a glass house shouldn't throw stones." I imagine the same notion applies to cars. For one thing, you'd be a dunce to upset somebody when you're only one fender bender away from taking the bus. Also, conscious or not, I believe some people behave more aggressively when they feel "anonymous"-- something hard to do when you're riding around exposed, looking like Wonder Woman in her invisible jet.
2. Less aggressive driving. See point 1.

Easter eggs

My original intent was to write every day while I was in TX. But how? And where? I find that I let these technical specifications get in the way. As I approach my pen, I think "I really should type instead". But as I approach my laptop I start wondering, "But what file structure should I use? How will I find this tidbit later when I feel like working on it again?" and "How will I ever think to run across it again once I've forgotten it exists?"

Starting as early as elementary school, I felt compelled to get thoughts and ideas down on paper. To be more accurate, I felt compelled to get the beginnings of thoughts and ideas down on paper. A number of my childhood notebooks contain segments of stories, parts of poems, inklings of ideas. Whenever I felt like reviewing what I'd written, I would grab a stack of notebooks and page through them. But even better than that was accidentally finding something from years before whenever I pulled out a half-empty notebook for some other use. In the middle of taking score for scrabble, for example, a muse would tap on my shoulder reminding me of an idea that was interesting to me and that I wanted to work on.

Home again, but different

In TX again, I'm sitting indian style on my childhood bed. (Where does the term "indian style" come from?)

What's different from when I last lived here, 13 years ago? I'm older, my hair is approaching "salt and pepper", I'm out of shape... That cannot be it, but those are the first things that come to mind.

The first, I can do nothing about. Time marches on, dragging us by the hair behind it. We can resist, straining with all our might to stay put as our hair gets pulled out and the soles of our shoes get worn down. We can let our bodies go limp and feel the torture of the road as we bump and scrape against it. Or we can try to walk along, adapting to changes in pace when necessary.

I am 31, but I still let my parents "parent" me in some ways. When I come home, they still insist on paying for my meals, buying me socks, handing me the gas card if I'm going to fill up their car... I read recently that domestic pets never mature to full adulthood due to the relationship with their owners extending the parent/kitten, parent/puppy dynamic. Is that the same of my generation? At least for those of us who are marrying later, having children later, buying houses later, etc...?

As for my hair, I'm fine with the gray. If I were to dye it, what would that change? Underneath the dye, my hair would still be gray. :)

And physical fitness? This is the one factor I technically have complete control over but that I have done little about. Am I refusing at a subconscious level to be more like my 18 year old self? Perhaps this is the only real way in which I can truly say that I (not time, not genetics) have changed!

This is silly of course. But so again is the fact that I am still out of shape.

With a side of toast

I got back on Monday from a week in MN. It was nice to hang out with Michelle and her husband Chris, but a part of me was starting to feel a little bad about the wedding toast that Chris had asked Michelle to ask me to do.

I had over a month to work on it, yet I showed up to MN with NO CLUE what I would say. I told myself, "I will work on it in the evenings, after Michelle and Chris go to sleep" but instead I found my lazy self fast asleep after bidding them good night. Each night. For a week!

But I guess some subconscious part of me was working on it even though my conscious self felt too overwhelmed. The day before the wedding, something just clicked ON and turned off my procrastination button. I stole away secretly to take notes here and there, I walked off with Michelle's brother and sister-in-law to harvest more stories, and I thought and thought and thought.

When I got up to start my toast, I felt weak in the knees. This is not a feeling I'm used to, but then again this was really important to me! I started off asking who in the room had seen "the Gremlins"-- I looked over at Michelle and could see her nervously looking at Chris like "Oh my gosh, where is she going to go with this?!"

I was in a room full of people who knew Michelle-- so they either loved her too, or at least liked her an awful lot. There was so much inside me that I wanted to share-- all these little stories about times that I've spent with Michelle, ways in which she has blown me away, ways in which she has fortified my spirit, ways in which she has made me laugh until I cried. Everything just clicked.

A woman sitting at my table told me, "You could do this on TV!" But I laughed and explained "not everybody would be so interested in hearing all about Michelle..." ;-) All kidding aside though, it was a real high for me.

Learning through listening

I spent Friday evening through Sunday afternoon steeped in stories. Arranged by Meg Gillman and facilitated by Elizabeth Ellis, the workshop I attended was an excellent way to spend the weekend.

Today, I spent the day with coworkers from CRCP discussing race.

It's interesting how you subconsciously get to know people as issues/stories are raised, responded to, and/or discussed. Although I can't name the subconscious "learning" that takes place, I am aware that it happens.

Possibilities

At a meeting today, I was reminded of my experience as a "Big Sister" a couple of years ago. My match, upon our first introduction let me know that she wanted to be a store manager when she grew up.

"And if not a store manager, then a cashier. And if not a cashier, then a person who stocks the shelves..."

Being a store manager seems like a pretty worthwhile living. What struck me was that her goal was something she was proud enough to have dreamt up that she introduced herself to me with it. It also struck me that her goal seemed a bit fixated on stores.

After a few questions, I learned that at some point in her family's past her mother had been a store manager. (For some reason, the position wasn't permanent.) This position, in my little sister's eyes was the Big Time-- and she was aiming for it.

I made a point of exposing her to wider selection of Big Time careers. I brought her to my alma mater and gave her a tour of the engineering classrooms; I talked to her about friends in medical school, friends graduating from law school, friends working as professionals in different fields.

Almost immediately, her visions of her future reflected the input. From "I want to be a singer" one week to "I want to be an engineer" the next, it seemed clear that her imagination had been given a little more wiggle room within which to play.

At any given point, there are countless possibilities open to the average adult. But, just like the many children out in the world who have no idea what possibilities are open to them due to lack of exposure, many of us adults are walking around with blinders on. Where do the blinders come from?!

And, if we manage to remove the blinders or catch a glimpse beyond them-- what keeps us from heading in a new direction? Fear, stubbornness, pride, misguidance? "A bird in the hand is worth two in the bush"?

At that same meeting, someone quoted Scott Fitzgerald

Vitality shows in not only the ability to persist but the ability to start over.

How do we learn to start over? How do we learn that it's okay if we might have to start over in the future?

Dreams

What did the anxiety dreams of cavemen look like? Did they *have* anxiety dreams, or are anxiety dreams a product of modern society?

Common themes: showing up to work with no clothes on,
forgetting what room your class is in,

What would the caveman equivalent be?

When I am dreaming I have a hard time reading numbers. Is that what it feels like to have dyslexia?

Healing

Some relationships seem to be built out of brick. One could huff and puff. And nothing.

I imagine there are ways to compromise the foundation of any rock solid building. But are there ways to forge a foundation once it has been weakened?

A number of years ago, a huge flood swept through my home town. My grandmother's house was one of many that quickly saw water touch the ceiling (luckily she was not in her house at the time.) When the flood was over, the government came in and offered support. On top of that, they marked all the houses whose foundations had been cracked with a huge, red X. All the red X'ed houses were demolished within the year.

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It's a good thing that when one breaks a bone, the doctor doesn't mark it with a big, red X. Of course, the lack of a red X may lull limb abusers into a false sense of security! Will they realize that a healing limb cannot be taxed in the way it was designed to until it is fully healed? Will they understand that attempting to do so beforehand may hinder the healing process?