Confirmation

Today I made the trek back to midtown to see a rheumatologist for a consultation.  My neurologist wanted him to "think outside the box" to see if he had any ideas on what is going on.  Aside from the negative lab work, he feels that this is a pretty textbook case of Stiff Person Syndrome.  That confirms that neurologist's suspicions, and it looks like my next neurology appointment will be to discuss treatment options.  The upside is that since I have had symptoms for years with no diabetes, cancer, or serious autoimmune issues, I am unlikely to develop those comorbidities of SPS.  I do not need to see the rheumatologist again unless the symptoms change and I need to be reassessed.

The treatment options are not fantastic, but they seem to work fairly well in the studies and anecdotal reports that I have read.  The first stop is Baclofen, which wasn't particularly helpful for me.   Next is Valium, which wasn't very helpful.  I have only taken a low dose of Valium, and with SPS the dosage is usually fairly high.  After that is what I am currently on - Ativan and Flexeril. 

Steroids have been effective for me, but I am not willing to risk the long term side effects.  There is no question of IF you will develop side effects with long term treatment. The question is WHEN.  It could be tomorrow, or it could be twenty years from now.  Aside from that, immuno-suppressants can be effective.  As a last resort, plasmapheresis and IVIG treatment can help. 

I can say that I have been nothing but pleased with the doctors and staff at Mercy.  Every person I have spoken with has been warm and caring, and they actually listen.  After getting brushed off by so many doctors in the past 13 or so years, finding a doctor that really listens and cares means so much.  Their billing system is a little wonky, but I'm willing to deal with a little wonkiness in exchange for good care.

Cheep cheep!

Our chicks are officially growing up.  The Barred Rocks are 28 days, and the Hamburgs are 33 days old.  It is amazing how quickly these little birds grow.  Last weekend we found a couple birds out of the brooder.  They were sitting on top of the closed worm bin, looking around like they ruled the world.  We were a behind on the ark project after getting sick, so we had to rush to get the run portion of the ark completed.  The fencing and doors went on, and in went the chicks.  They'll stay inside for awhile longer until the weather is warmer.  

The girls have figured out that I am their food source.  I have to smile every time they follow me in the garage, all while cheeping at the top of their lungs.  I thought dogs could be big mooches...that was until I met these little girls.  I just hope that they ARE all girls.  I am a little worried about a couple of them, but we will have to wait and see.

Here is a video of my little piggies.  They don't seem to like bananas.  More for me. :)

the brain doctor

Today Emma and I trekked down to midtown Sacramento for my neurology follow-up appointment.  My doctor is a popular guy, so babysitter or not, I'm going.  As it stands, we have no real answers, aside from what this is *not*.  He mentioned the words "Stiff Person Syndrome" again, and my heart sunk a little.  It is better than many of the diseases I have been tested for, but having a rare, serious neurological condition is scary.  Even though I tested negative for anti-GAD antibodies, 20% of patients test negative but still meet the rest of the diagnostic criteria.  

Because I had almost no spasms while taking Decadron after oral surgery, the doctor is more convinced that this has some autoimmune component to it.  He sent off a referral for a Rheumatology consult, and I got a call from Rheumatology right after I got home.  Next week I'll make the trip back downtown to see the rheumatologist.  Maybe he will have some insight.  Maybe not.  At this point in my life, I am used to hearing "I just don't know."

Not knowing hurts.  Not being able to move on and live the life I'd love to have hurts.  I want others to understand that this isn't me being lazy, or fat, or whatever else people have labeled me at some point or another.  I don't like the looks I get if I go off the medicine and go out hobbled over.  I don't appreciate the sneers when I use a scooter while we're out in public.  Not being able to have a family full of little ones hurts the most.  

“I asked God for strength that I might achieve. I was made weak that I might learn humbly to obey. I asked for health that I might do greater things. I was given infirmity that I might do better things. I asked for riches that I might be happy. I was given poverty that I might be wise. I asked for power that I might have the praise of men. I was given weakness that I might feel the need of God. I asked for all things that I might enjoy life. I was given life that I might enjoy all things. I got nothing that I asked for, but everything I hoped for. Almost despite myself, my unspoken prayers were answered. I am, among all men, most richly blessed.” - Anonymous

 Curled my hair for my neurology appointment.  Heck, why not?

Revenge of the blood suckers...and more.

We haven't talked about it much, but we've been trying for awhile to give our little girl a brother or sister.  It just hasn't been happening for some reason.  Back in December, I went to my doctor for some lab work.  I had a feeling that something was "off".  There was a mix-up when they updated my address, and I am horrible at remembering to call, so I finally got the results.  Something was off.  This Saturday I get the pleasure of fasting again for further testing.

What is off?  Well...my thyroid results were way off.  My TSH levels were off the charts low, as was the T3 level.  T4 came in just below the reference range. (The "normal" range.)  Normally, if T3 and T4 are low, TSH should be high.  It sounds like my pituitary gland has gone a little wonky, but I'll find out more after they retest to double check the results.  I'm actually a little relieved to have it be the thyroid, because it is less difficult to treat than other hormonal issues.  Hopefully we can get my levels back into the normal range, and it will happen.  I'm crossing my fingers.  I've talked to a number of doctors, and none see much of an issue with the muscle spasms.  I may have to switch medications, but I can manage that.

In other news, my EMG results were completely normal.  I figured that they would be, but my new doctor wanted to retest to be absolutely sure.  So far, they have ruled out any autoimmune issues as well as the nasty things like MS, ALS, etc.  There could still be some crazy condition out there, but for now we are focusing on treating the symptoms.  I asked the doctor's assistant to see if a muscle biopsy might be helpful, and I have an appointment next week to talk about it with the doctor. 

Our chickies are doing well, too.  We have the four original Silver Spangled Hamburgs, and six Barred Rocks that are a few days younger.  They are getting so big!  The girls have wing feathers, tail feathers, and they're getting feathering on their backs now.  It is absolutely hilarious to watch them play keep away - especially with worms.  Worms are like chicken candy!  This weekend we need to work on getting the coop together.  Hopefully the weather will break long enough to get most of it done.  These girls sure are cute, but I'm a little tired of vacuuming the garage every couple days. :)

Rough Start

What a week this has been.  Last night I finally broke down crying.  I had been stoic until that point...just, detached.  Last night it hit me.  Emma started crying, I was crying, and at some point I think Adam was crying, too.  All of that fear and grief over losing so many little lives came out.  It felt good to let it out, and we did.

We're at five little chickies now.  One was acting lethargic last night, but she survived and is fine.  Poor thing was probably just tired.  I noticed some "pasty butt", and spent a little bit of time cleaning their tushies.  If dried poop gets stuck on their butt feathers, they won't be able to pass waste and will eventually die.  After getting them clean I used a q tip to rub a little olive oil around their vents.  So far, so good.  I haven't seen any pasting since. 

This morning I woke up to find five little fuzzy butts taking a nap.  You can't help but smile.  They are too stinking cute.  As far as filling out our coop with ladies...I gave Adam a wish-list from a local hatchery.  Maybe I'll get some for my birthday. :)