Answers?

After we drop Emma off with my dad, Adam and I are heading downtown for an appointment with my neurologist.  I hope that we can get some more answers, and a treatment plan.  I have in my mind what I would like to try, but it is up to him and the insurance company.  So far we haven't had an issue getting any tests or treatments approved, but I'm praying that it stays that way.  Here's to a good appointment, and hopefully a treatment that helps.  

My best friend...

I think that it is time to praise my best friend, my dance partner, my love.  Somehow it was in God's plans for us to meet at the most boring workplace I've had the pleasure of working at.  That meant a lot of conversations to fill the time.  We became fast friends, and eventually, we became a couple.  

He loves me unconditionally, no matter my flaws.  His eyes still light up for me.  He may not be a hopeless romantic like myself, but in all honesty, that is okay.  He is the best father I could have asked for.  He loves our little girl with all of his heart and soul.  He would do anything for us, without even a question.  Lately he has had to play chauffeur and advocate for me when I am not able.  

For that, I thank him.  I thank God for meeting him. I love him with all of my heart and soul. Love you, Baby!

questions...

This past week has left me with more questions than answers.  Will this progress?  Will treatment help?  What kind of treatment should I go for next?  Will I be able to work again?  Should I reapply for disability benefits now, or wait?  Will I have a normal life expectancy because I do not have the anti-GAD and anti-amphiphysin antibodies?  

My next follow-up isn't for another month.  I think that I'll call the doctor's assistant to see if we can get the ball rolling on treatment before then.  I think that I'd like to try ivig and/or plasmapheresis, but I have horrible veins.  Will I need a medi-port?  Not quite sure...but it is a strong possibility.  


 Right now I could really use prayers and hugs and love.  So if you see me, pull me in and hug me.  I'm going to get through this - but I need my family and friends more than I ever have.  I'll let my favorite troubadour play us out...

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. :)