Tuesday, January 31, 2012

Myositis: A Misdiagnosed Medical Mystery - ABCNEWS.com

Myositis: A Misdiagnosed Medical Mystery: ABCNEWS.COM

Myositis is mistaken for everything from depression to rheumatoid arthritis.

This clip is still pretty vague, but informative nonetheless!

P.S.  Did you know that September 21st is Myositis Day?  Me neither!  The attached link gives resources for contacting your congressional representatives to encourage awareness of the disease.

Sunday, January 15, 2012

Hello 2012

With each new year, there is the feeling of starting fresh, saying goodbye to the year past.  Although I am incredibly grateful for 2011, I was excited to welcome 2012.  
They say that your mind forgets pain; I believe this.  It is hard to imagine where I was a year ago today.  Although I still have days that are more difficult than others, it cannot compare to going through those days in the dark; not knowing what was wrong or what to do.  I still get a feeling of panic when I feel pain, or aches; but I know what they are, and that eventually, they will pass.  
I left 2011 trying to begin a new drug called Plaquinel, that would be less aggressive on my body, and allow me to take [possibly] during pregnancy.  There were a few stages of side effects that I needed to pass to know if it was for me.  Unfortunately it wasn’t, so on to plan B. 
People have been known to have taken Methotrexate (MTX - the drug that I currently use to control my DM) for upwards of 20 years.  The only problem that I note to my doctor is, that only gets me to 50; what am I going to do for the rest of my life?  Although there are not any other promising leads for new drugs to treat a myositis on the horizon, it has only been about 20 years since doctors began prescribing MTX to patients with auto-immune diseases.  Those 20 year MTX patients will continue to be documented as they add years to their original 20 - and I can follow that as I work on my 20.  If there’s a problem post-20, then we’ll deal with that later; sort of a “so-far-so-good” theory.  Works for me; especially since I don’t have any other options.  
I have switched to a lower, oral dosage of MTX (I was starting to have serious injection-anxiety).  I was on the equivalent of 10 pills via injection; now I am on 6. We will monitor my levels as I attempt to “maintain” on a lower dose.  If my levels look okay, we’ll move down to 4 pills.  Hopefully I can maintain my levels at this incredibly low dose for two reasons.  Firstly, because it will [hopefully] be easier on my body long-term.  Second, so that if we want to try to have a baby and I need to stop taking MTX all together, it hopefully wouldn’t be such a jolt to my system.  If I did get sick again while off the MTX, at least we know that a 1mL weekly injection should get me healthy and feeling good in time.  
It’s scary, but we’ll just have to cross that bridge when we get there.  For now, I am just adjusting to the medication change and continuing to work on managing the fibro.  One thing at a time!  
Good news with my little Pronto Puppy, his counts are were good, so he got to reduce his dosage of medication, too!  Still running around the house like a pup!  I am feeling good about 2012 as it has gotten off to a good start with a healthy and happy little family!
Much love to you and yours in the New Year!