Sunday, November 28, 2010

I Heart Faces - Scenic B&W

This week's challenge over at I Heart Faces is scenic black and whites.  For some reason this image struck me, so here it is.  These are two of my nieces hamming it up this Thanksgiving.  Are leaf covered parks scenic?  You'll have to decide.  Either way, I think they're pretty cute.

Monday, November 22, 2010

I Heart Faces - Paper

It has been a LONG time since I have entered a photo in the weekly I Heart Faces contest.  Life has been...well...crazy.  It's time to get back in the swing of things. This week's theme is paper.  

This Halloween my husband, sister, and some friends from my sister's gym participated in the Merrell Down & Dirty Mud Run at Folsom Lake.  There are a LOT of good pictures from that day, but when it comes to paper, this one is my favorite.  You can see the other pictures here.  The costumes are pretty funny, and my sister and husband ate their fair share of mud.  I was more than happy to stay dry and behind the camera for this one. :)

My little sister, Mallery, and her friend Kacie were nearing the water obstacle in this picture.  It required a nice, long walk through the lake.  After this, they had to climb a slippery mountain obstacle, and then crawl through an icy mud pit.  

Friday, November 19, 2010

Waiting (Is The Hardest Part)

Tom Petty had it right.  Waiting really is the hardest part.  The context was different, but the lyrics hit home.  I don't want to be diagnosed with a serious disease.  I don't want to be dependent on expensive, invasive treatments for life.  That being said, I NEED a diagnosis.  I need to know what is wrong with me.  Part of that need is to reinforce what I already know - this is a REAL condition.  It isn't psychogenic, it isn't made-up, it isn't make-believe. I am a little worried that I won't get the results back before the holiday, and that means another week of waiting. 

If this round of tests does not yield any answers, I am not sure where to look next.  I have been a weepy mess the past week or so.  I wouldn't say that I'm depressed.  I just have no idea what to expect, and being left in the dark is painful.  Out of any of the possible diagnoses, SPS seems to fit the best.  For now, I'm praying and lifting this one up.  There isn't much I can do but wait.  

What is Stiff Person Syndrome?

Stiff-person syndrome (SPS) is a rare neurological disorder with features of an autoimmune disease.  SPS 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.  Abnormal postures, often hunched over and stiffened, are characteristic of the disorder.  People with SPS can be too disabled to walk or move, or they are afraid to leave the house because street noises, such as the sound of a horn, can trigger spasms and falls.  SPS affects twice as many women as men.   It is frequently associated with other autoimmune diseases such as diabetes, thyroiditis, vitiligo, and pernicious anemia.  Scientists don’t yet understand what causes SPS, but research indicates that it is the result of an autoimmune response gone awry in the brain and spinal cord.  The disorder is often misdiagnosed as Parkinson’s disease, multiple sclerosis, fibromyalgia, psychosomatic illness, or anxiety and phobia.  A definitive diagnosis can be made with a blood test that measures the level of glutamic acid decarboxylase (GAD) antibodies in the blood.  People with SPS have elevated levels of GAD, an antibody that works against an enzyme involved in the synthesis of an important neurotransmitter in the brain.  

Is there any treatment?

People with SPS respond to high doses of diazepam and several anti-convulsants, gabapentin and tiagabine.  A recent study funded by the NINDS demonstrated the effectiveness of intravenous immunoglobulin (IVIg) treatment in reducing stiffness and lowering sensitivity to noise, touch, and stress in people with SPS. 

What is the prognosis?

Treatment with IVIg, anti-anxiety drugs, muscle relaxants, anti-convulsants, and pain relievers will improve the symptoms of SPS, but will not cure the disorder.  Most individuals with SPS have frequent falls and because they lack the normal defensive reflexes; injuries can be severe.  With appropriate treatment, the symptoms are usually well controlled.

(2010 - NINDS)

Thursday, November 11, 2010

It's been awhile...

I haven't posted for awhile.  Life has been...well, it has been a little crazy.  Since last year my muscle spasms have gotten worse, and it is affecting me differently.  I don't like to admit it, but it has slowed me down.  My neck is often craned to one side.  My neck and back get so tight that I walk hunched over like Quasimodo when things get bad.  

It isn't all bad news, though.  Most of the craziness of this past year is gone.  We don't have the income from me working, but I would rather be broke than struggling even more than I am.  We are living at Mom's house, and in many ways it has been a blessing.  Mom and Emma LOVE being able to spend so much time together.  Those two are like peas in a pod.  I get the chance to garden when I can, and we've been helping maintain the house.  

Unfortunately, the neurologist I was seeing turned out to be not so great.  She wasn't listening...and it really showed.  I understand that doctors are often overbooked and have trouble keeping patients straight if they aren't looking at their records.  When you confuse me with other patients at every appointment, I start to get worried.  Like, really worried.  The last straw was when she told me that I am having psychogenic spasms because of the stress of my husband being deployed abroad.  When I told her politely that my husband was in the waiting room and worked a very safe job, she snapped.  I left crying, and decided to never, ever go back.  

That day I managed to get in to see my chiropractor.  I actually used to see her father, and still sometimes do when she's out of the office.  It's a family business with her mom managing the office.  I can't express in words how awesome they are.  They're the type of people that you're always glad to see.  They're so patient and understanding, and I recommend them to anyone that will listen.  Anyways, I did get in to see her that day.  She assured me that I was not having panic attacks, that it wasn't psychogenic, and that I did need to find a new neurologist.

After plowing through the list of neurologists our insurance would cover, I decided to ask around.  Luckily, my good friend's ex works for Mercy.  She was able to squeeze me in to see the head of neurology in just a few days.  I had a serious migraine the day of the appointment, and had to reschedule so that I didn't vomit on the way there.  It ended up being a wait, but I was willing to wait. 

I couldn't have been more impressed with the neurologist.  I can see why he earned that position.  He not only listened to every word I said, but I could tell that he genuinely cared.  I can't express how relieving that is when you've been struggling to find the right fit with a doctor.  The doctor decided that it would be best to wait for my Dysport injections to wear off, and to order blood work in the meantime.  

Unfortunately, my follow-up appointment had to be rescheduled.  The doctor couldn't see me for awhile, but I was able to get in to see his assistant.  I was nervous, but she turned out to be just as caring and understanding.  My blood work was slightly abnormal, and I need to work on getting more potassium and B6. Getting my potassium levels up may help with the cramping, but it isn't the answer.  

The bad news?  There is a chance that I have Stiff Person Syndrome, and I need to go in for more blood work.  This time they are looking for specific antibodies that would show an autoimmune attack on my muscles, as well as signs of muscle tissue damage.  Frankly, the idea of a progressive disease scares me.  I won't know for a week or so after the tests, and I'm trying to not think about it until then.  If the test comes back positive, I will probably end up on intravenous immunoglobulin treatment.  Antibodies collected from thousands of blood donors would used in hope that it would flush out my immune system.

If you are the praying type, I could use the prayers.  Please pray that we can find the answers soon, and that there will be a cure.  Pray for the strength that I need to fight this. 

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