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!

Wednesday, April 01, 2009

I'm gonna be a MOM!

Wow! Too cool - people (besides my Mom) apparently still read this blog! It is not nearly as interesting as some I have found (for a real laugh, check out

I DO have some fantastic news, though! It seems very, very likely that I will be adopting both my current kiddos! N is 12yo, very bright, very active and is giving me a run for my money! T is 14mo, a bit delayed-but-catching-up and also giving me a run for my money.

The trouble now is having patience. Both children's families have had their rights officially terminated (though T's did this voluntarily), but the courts give them 3 months to contest. During this three month period, I have to:
1) update my homestudy
2) have both children get another physical (?!)
3) get a psychological assessment done for N
4) hire an attorney
5) go through presentation meetings for each kid (this is where a panel reviews my homestudy to make sure I am not a nut.....or, at least, not the kind of nut that would harm children)

At the end of the three months, I will be able to petition the court for adoption. I have already contacted an attorney, who assures me he can set a date as soon as he gets the ok. It would be fantastic to do both kids at once, but since they are from different counties I know I will wind up with two different dates.

Still hard to believe......4 years ago I needed help getting off the toilet, and now I am about to be the Mom of two kiddos!!!

Life is good.

Thursday, February 12, 2009

Wow! It really HAS been a year!!!

So, does anyone besides my Mom even look here anymore?? Probably not, and it's all my fault for getting so caught up in the foster care my defense though, they really are strangely compelling. If you ever feel lost, frustrated, completely out of touch with your kids - visit a foster care forum. The stories there will make you thank your lucky stars your life is so good!

I have been fostering for about 2 1/2 years now.....I think. Maybe longer? I don't even know anymore. I have had (at last count) THIRTEEN children in my home. And you know what? It's still standing!! Of course, my cream leather couches now have lovely scribbles in black sharpie, I have NO grass left in the back yard, the livingroom has been taken over by toys and the garage with boxes of 'stuff' from parents who seem to view cockroaches as a fact of life. Oh, and my car? Poor thing will never be the same. I used to be amazed that my OCD sister-in-law's car would have a mess inside. Now I understand. I swear, there is NO WAY to prevent every little crack and crevice from accumulating crumbs, vomit, juice, urine.....hmmm, I guess I can't blame it all on the kids. No - NOT ME!!! Dogs! all those strays I grab off the street leave their (ah-hem) marks, as well.

So - thirteen placements later (fourteen if you count the one that came back for round 2) and I am finally starting to feel like a parent. Not enough of one to realize that my DAUGHTER was not the most reliable source for determining when school resumed (so she has ONE unexcused absence - get over it!) but a parent nonetheless. My current two kiddos look likely for adoption, and aside from being ecstatic, a part of me is sad. You mean I can't keep trading them out for newer models?? It has been a lot of fun (aside from a few memorable placements) watching all of the different personalities wade through my home.

Of course, NONE of this has ANYTHING to do with the purported theme of this blog.....Myositis. So. Here is my bow to the theme - I am doing fine.

That is my stock response.

I am doing fine.

I am still on all meds, which doesn't bode well for the remission-within-five-years hope I have held. But, fat face aside, I seem to be holding up. It is looking like I will be on Prednisone the rest of my life (ugh!!!) but maybe, MAYBE I might be able to cut off the IVIgs. That would make my insurance company happy!

I have three dogs, a job (which is saying a LOT these days), two kids that may be here to stay, a home......

I am doing fine.

I am doing GREAT!

Thursday, January 03, 2008

Ok - Maybe hectic DOES cover it!

Life continues to be a bit hectic - I had the day off today, so dropped the boys off at daycare and went to get my monthly bloodtest (2 months late!). On my way home I witnessed a serious car accident and wound up sitting with one of the victims in his car keeping him from passing out before the ambulance got there. Poor guy - I used his cell to call a friend of his who was nice enough to call me back later to tell me he was fine....concussed, but fine.

I returned home to catch a quick nap before tackling the removal of the Christmas lights and all the fallen leaves in the front yard.

I went to pick up the boys and all three came home hungry and cranky today, so dinner was a marathon. J1 and M decided to 'have it out' over who's Mama I was - two 2yo yelling at each other "MY Mama" over spaghetti certainly added to the ambiance.....NOT!

I did have to giggle listening to them on the car ride home, though. J2 was sitting in the middle car seat with wide eyes listening to J1 say - well, I'm not sure exactly what he was saying, but it prompted M to respond with a very bored "not funny" over and over again. It was like listening to a bored teen sneer at his much younger brother

Oh! How interesting life has gotten!

Happy New Year!!!

Wow! I haven't written in a looong time, but I have a great excuse - THREE TODDLERS!

So - here is my foster saga so far: M 2yo, placed 5/07 (still here); C 3do, placed 5/07 (adopted by an aunt 11/07); N 10yo, placed 8/07 (ru'd 9/07); J1 2yo and his brother J2 1yo placed 12/07 (still here). I still wonder if God is laughing at my fervent wishes to NEVER parent a girl (based on the hell I put my parents through) by sending me three boys LOL!

Life is good, if busy. Christmas was WONDERFUL as my parents came up to spend time in my madhouse.....poor things were exhausted by the time they left. J2 kept them hopping as he busily gets into everything possible. It was a zoo here with 2 birds, 3 dogs, 3 adults and 3 toddlers. Hectic doesn't begin to cover it!

The boys fell in love with Dad - poor Dad probably went home sore from all of the wrestling he did with them. M spent Christmas with his Mom, so we had the other two boys, who were very confused by the whole event. The most excitement they showed was when they spotted the fire in the fireplace!

M is due to return to his Mom in the next few weeks or so, but J and J are kind of up in the air. There is a possibility that they may be available for adoption.....I am having a difficult time with this as it is tough to protect your heart. I would love to adopt them, but am afraid to become to hopeful as this would make losing them devastating :(. I have done fine with my other kiddos as I pretty much knew going into it that they were all going home.....this is a little different and I am hoping to get more info (eventually) when I meet their CASA worker. For some reason, CASAs are much more forthcoming with info than Case Workers- IF they approve of you ;)

As many of you know, I tend to be rather reclusive at home.....fostering has certainly taken care of that! I have so many people coming and going that there are times when I feel more like a daycare! Therapists, CASAs, Case Workers, Case Managers, Auditors, etc, etc all have their scheduled visits to maintain. Yikes!

I am VERY fortunate to have the world's greatest neighbors - they are as involved with the kiddos as I am! Their daughter babysits on the weekends and holidays (I think I am paying for her first year of college!) and the parents come over to help and to spend time with the boys. It is wonderful to see all of the kids gain confidence from all these interactions with caring adults. J1 was so shy when he first got here, and now he greet adults and is very quick to tell me when he wants something!

I am hoping that the Christmas visit helped with some of my folks' concerns......right Mom?? I was tired, but still doing fine even with managing the store through the holidays and taking care of three active toddlers at home. One thing is for sure, they certainly give me something to focus on and look forward to each day! Much better than when I was just puttering around being bored at home.....

My Grandfather is due to go in for some surgery for cancer.....and the big DODO sent MONEY to us grandkids. While I appreciate both the money (foster stipends do NOT cover most kids' needs) and the sentiment, I do NOT appreciate the idea he is going into this surgery expecting to pass on. I am sending him some sharp words on that account - we would much prefer to have 'Great-Grandpa' with us for as long as possible, but I know he misses Grandma......

Well, this post was just to catch everyone up! Hope 2008 comes with many happy surprises!

Wednesday, July 18, 2007

Harry Potter....again?!

Wow! How life has changed since my LAST Harry Potter launch!

We are busy at work, but life is even busier at home. It looks like C will be with me for one more month, then will be moving in with an aunt in another state. I will really miss her! She is very aware these days, and I am starting to see some small smiles. By the time she leaves, she will have a personality, making giving her back doubly hard! :(

M is doing very well, and I still don't have a date on when he will return to HIS Mom.......

I have to wonder what will be in store next, plus hope that one of these days I will foster a child that may become mine....

Monday, June 04, 2007


I had to face a very hard fact beloved retriever mix Teddy simply can't stay.

Both kiddos were down for a nap and I had Teddy on the floor with me hovering above him to shave his ears (guaranteed to cause a bit of anxiety) when one of my other dogs, Chloe came too close. Teddy snapped at her, missed and nailed me on the inner thigh.

I wound up bundling up both kids for a quick trip to the ER to get stitched up.

Most dogs learn how to give warnings....growl, nip, etc. Unfortunately, with Teddy's time on the streets, he never learned this lesson. Like pitbulls, when he bites he means it and if you are in the way (he NEVER bites people...just other animals) then you are looking at a serious bite.

I HATE this....most rescues automatically put down dog-aggressive dogs, and if I can't find a dog-savvy family to take him I could be condemning another poor dog to serious injury or death.

I am just sick - emotionally AND physically! I really love this dog.....but GOD - what if it had been a child in the way?!

Sick - I am just sick about this.

Wednesday, May 30, 2007


I met with my Case Manager AND the GAL for C today. I had hoped they could meet M, but he had a visit with his Mom today, which meant no nap so he was already asleep when they got here. My CM peeked in at him, though, so she could see his room, etc. It is heartbreaking to see how much he misses his mommy - he kept asking me when she was coming tonight :-(

Apparently, C's Mom has her first court date tomorrow....the GAL (Guardian ad litum) said it should be interesting to see if she shows. They don't really expect her to, but who knows?

Everyone seemed happy with the kids' placement, and they changed M's placement from emergency (very short term) to placement until permanency could be achieved through placement with Gma or Mom. In other words, he could be here for months!! I am fine with that, but I know my case manager was hoping for shorter term so they could place another child.....I think they are irritated that Gma is licensed but still won't take him simply because she isn't getting along with her daughter (M's mommy). On the other hand, I kind of question why they would place him with someone who kicked her own daughter out at 16!?

I am off to my own Dr appts tomorrow and will have C in tow, which should be interesting! LOL! I am hoping my Dr might be able to give me some direction in finding a pediatrician.....I really dread returning to the clinic I had to take C to. But, I guess it's better than nothing!!