Life with a Myositis Disease

The laughter and tears that come with living with Polymyositis

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Location: fort worth, texas, United States

Sunday, February 28, 2010

I suck at blogging!

I admit it - I just don't have the focus to maintain this blog!!

I figured it might be time for a *small* update, for anyone who still checks in periodically.....

My health is stable and my insurance finally gave out. I hit the million dollar lifetime limit, so no more Ivigs. The good news is that I seem to be doing fine on the prednisone alone. Maybe I WILL be one of those fortunate enough to hit remission in the first 5 years!

I AM A MOM!!! I adopted my son and daughter last August - yippee! My daughter (now 13yo)has been giving me a run for my money (and sanity!), leaving my mother in fits of hysterical laughter. I love her, though, and just keep dreaming of the day when the hormonal insanity ends and a normal human being asserts will happen, right? RIGHT?!

My son is moving right along. His birth mom comes down with her parents every couple of weeks to visit. I haven't heard from his dad in awhile - apparently, he has a new girlfriend and wants to 'move on' with his hope is that he will still stay in contact.

I am still fostering - just sent two brothers to live with their grandmother, and the next day got a call to take an adorable 3yo girl. Up until this point, nearly all of my placements have been boys. My daughter and 2 infants were the only girls. So, I dragged both toddlers to the store with me to pick up appropriate clothing (like, something warm??? Why do I keep getting kids in the middle of winter dressed in shorts and T's???) and a few girl-type toys. I discovered that it is so much easier to find clothing for little girls!

I am enjoying fostering, but have been being hit with some pretty bad stories lately about the foster care system (percentage of children in care who are abused by the foster parents) and from former foster children who have aged seriously leaves me ill to think of people being given traumatized children to care for just to turn around and add to their trauma. I just don't get it.

I've been emailing with a young woman whose blog I was referred to.....she is one of those kids who aged out of the system, and her story is truly a horrendous one. But, you know, she is amazing. She is so bright, and has such a way with words - lots of talent. I hope to stay in contact with her (at least for awhile) and watch her grow and, hopefully, heal just a bit.

Aside from the two new (forever) kids, the household has expanded in other ways....we are now a household of 2 (sometimes 3 or 4) children, three dogs, 2 cockatiels, 1 parakeet, 3 fish and one snail...... I just keep thanking my lucky stars that I am employed, reasonably healthy and have been blessed with two wonderful children!


Blogger Jerry Williams said...

Hi. I too have myositis (polymyositis). I am 34 and have had it for over 7 years now. I too was on IVIG (it made me so sick though, and was on it for 3 years). I am not on Cell Cept and methotrexate combination. I am starting a blog called Polymyowhat? at and I wanted to let you know since you are one of a few rare people that have this disease as well. Hoping you are doing ok. Would be nice to chat - my email is

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Blogger S Rocks said...

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11:42 PM  

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