Hard to find

Sometimes, it is hard to find the sunny side or the silver lining. Sometimes, there isn't really a silver lining.

When you have dogs, sometimes you have to contend with fleas. And if you have fleas, sometimes you have to contend with worms. We'd been lucky for a long time with Hell Hound. He'd never gotten worms before. Well, he did this year. We'd been working in the backyard cleaning it up and had him out there with us. He's never spent much time out there and, apparently, our yard is flea infested. We bathed him and all. I got some over the counter anti-worm medication for him.

See? I guess I was a bit naive or whatever. Always thought if your dog gets worms, you buy some stuff over the counter and *poof!* they're gone. Little did I know. He got better briefly then got worse again. I finally took him to the vet on Thursday to get some prescription stuff. To the untrained eye, he had a bloated belly from worms. He was losing weight like with worms.

He might have worms. But, more importantly, that wasn't his belly and that wasn't his losing weight issue. He has organ failure. The vet, bless her heart, was honest. We could spend thousands of dollars to keep him going for another two months but the end will be the same. She removed some of the fluid from his belly (a liter and a half) to make him more comfortable. She said that two weeks is pushing it. I just wanted a few more days.

He's a good dog. The worms didn't kill him. The anti-worm medicine didn't kill him. Looking back, I can now see the signs of something wrong from months ago. He's always had a sensitive tummy. It has gotten more sensitive in the last year. And there were times we thought he was breathing a little hard but chalked it up to he was out of shape. All the worms did was probably weaken him enough for whatever the disease process was to advance.

My boy is only 5. He's been a good dog. He's smart...so very smart. We're lucky he never developed opposable thumbs. We'd have all been in trouble. And he knew the cats were the boss. One time, the little six pound cat herded this big galoot into his crate and wouldn't even let him turn around to lay down. She just sat there and stared at him. The other cat once made him stand in the corner and hissed every time he even turned his head. I used to hear him whining and, when I went to check to see what was going on, he was trapped on the landing and Big Cat sat on the lower stair, refusing to let him pass. He is a big ole 65 pound doggie and could have sat on her. But he was smart enough to know she was the boss.

I'm going to miss him. Bird has barely stopped crying since Thursday. She's been sleeping on the living room floor with him every night. On Monday evening, we all go in and all but one of us will come back. We'll do the last good thing we can for our baby and, soon, he'll be running through the fields of Heaven. I do hope it is segregated. I hate to think of him spending eternity being bullied by cats without me there to protect him.

I love you, Hell Hound. I'll miss your excited barks when you hear me pull into the driveway, your protecting barks to save me from the evil postman bearing bills, your jumping for joy when I walk in the door (yes, you learned not to jump on people and are correct we never said anything about not jumping near people).

I hope you'll have snow.

Pretty Amazing...

This is pretty amazing. As someone who was never conventionally "pretty", this does speak to me. Don't get me wrong...I was never ugly. But, I was never pretty. And my mother never led me to believe I was. That was the first way I was a disappointment to her. *shrugs* Oh, well...that's life. I am what I am and know not how to be anyone else. And that's okay.




Bird watched it. Predictably, she got caught up on one word. Figures. Oh, well, she is 15. But, I hope she took at least some of it to heart.

Meanwhile, got the call tonight. She got into the Stanford study! Finally! We've first contacted them a year ago! She'll finally be able to get the educational testing she needs. Maybe we'll be able to pinpoint what the issues all are and finally be able to develop a workable plan to help her cope with them.

Waiting to hear back from the school. I hate school issues. Like the teacher that told Bird that she could turn in an assignment a day late for half credit. Uh, no. She has a 504 plan that gives her extended time. The teacher said she had 4 weeks to do the project. The project? Find pictures that illustrated various angles. Unbeknownst to me, she was actually using the protractor to measure the angles...but only the right angles. What? She's CDO (that's OCD but alphabetical like it should be...). I finally got through to the teacher that you can't give Bird a project like that and then just walk away. Then another teacher apparently told her, when she tried to explain how missing a night of homework throws her even farther behind, that maybe she shouldn't have missed a night of homework. Uh, she was taken to the hospital by ambulance.

Anyway, the endo and ADHD doctor appts have been moved up three weeks. Took her into the pediatrician last week and the pediatrician became concerned when she heard everything all together - the food problems, the dizziness, the nearly passing out, the blurry vision. Told me to call the other two docs and see what they said. ADHD doc wants to reduce the Vyvanse, thinking it is making her hyperfocus. Also mentioned potentially putting her on something for the OCD symptoms and suggested melatonin for her to get to sleep at night. I suggested switching the blasted ADHD meds.

All in all, Bird is pretty wonderful, pretty amazing, pretty smart, pretty creative, pretty fun.

One thing and then the other..

Sunny skies. I need some sunny skies. Give me sunny skies! I demand it! Oh, wait...that's not a very sunny and optimistic way to look at thing, is it? Demanding sunny skies.

Okay, maybe if I ask politely for a little less rain.

My back to get better. And for Bird to never have another vasovagal syncope and not have to go back to the ER in an ambulance. That would be nice.

Oh, then I can quit obsessing that the doctors were just looking for an easy answer and didn't really neglect my daughter's care.

Fainting. She's never done that before. I hope it never happens again....

Blast from the past

Years ago, I used to do Erma Bombeckish essays about strange things that happened in my life. I have decided that, intermittently, I will repost them (in no particular order). Here is the first. The following is true. The names have been changed to protect the guilty.

~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

The Benevolent Being, in a fit of insanity, decided to get a dog. The Benevolent Being’s fits of insanity for things like this don’t disappear quickly. They linger and the insanity deepens until, finally, the Benevolent Being takes the plunge.

The Clan happily trekked to the Place Where Dogs Who Have Been Abandoned, Surrendered or Lost stayed while waiting for a Forever Family to take them home and love them forever. The Benevolent Being’s previous dogs had all been sweet and easy to train, desirous of nothing more than pleasing her (well, except for the dog as a teenager but he had character so he was forgiven his eccentricities). The Clan was excited (except for Joe Cool who believed that dogs were not appropriate to keep as pets, he’s a cat person). The College Daughter had gotten there first and already had a dog picked out that she liked. However, the dog did not like Joe Cool. Disappointed, she followed us back to the kennel to look at the dogs. The Benevolent Being liked one dog the children didn’t but she was concerned that he was already 12 years old…and twenty pounds or more overweight. They kept looking. Every dog that looked appropriate and excitedly wagged his tail as the Clan came into view quit wagging his tail as soon as Joe Cool appears. It seems the Canine World did not believe that Joe Cool belonged in a Forever Family.

In one cage, there was a lovely German Shepherd/Irish Setter mix, about a year old. The fur was the lovely red of an Irish Setter and there was a black arrow of fur on his forehead. His tail, what there was of it, was black with a little curl of fur on the end. He was adorable. Most importantly, he didn’t growl at Joe Cool.

So, a dog came to live with the House Churning Clan.

Part of the reason the Benevolent Being wanted a dog was that it would force her to walk and exercise. Here is a description of the walks that the Benevolent Being and the dog (heretofore known as Hell Hound) take.

“C’mon, baby, let’s go for a walk. Down! Sit!” Struggling to attach the leash. “No! Don’t eat the leash! Sit! Sit!”

“Slower!” Grabbing handrail to keep from falling down the stairs.

“Okay, let’s go. No, not that way. This way. Yes, you’re a good boy.” Walk ten steps. Stop.

“Let me know when you’re done. Good boy, you didn’t have an accident in the house. You’re such a good boy!” Patting dog on head. Looking up and down the street. Hell Hound is still busy with his liquid business. Checking watch. Looking up at sky to check for rain. “You’re done. Good boy! Let’s go!”

Walking down the sidewalk, Hell Hound is behaving well. Not pulling on the leash. Suddenly, the Benevolent Being sees movement out of the corner of her eye.

“Stop!” Struggling with the leash. “No! We’re not chasing squirrels! Sit!”

Hell Hound finally settles down and the walk continues, after a fashion.

“You don’t really and truly need to stop and smell every blade of grass.” Hell Hound ignores her and continues sniffing. “Stop and smell the roses is just an expression.” Hell Hound continues sniffing. The pace has slowed to a crawl. “Come…ON!” Pulling on the leash and walking away. Hell Hound reluctantly follows.

Turn the corner and start walking up the sidewalk. Hell Hound stops and sniffs then decides it is time to finish his business. When done, the Benevolent Being, being a good neighbor, pulls out a plastic bag to clean up after her darling dog.

Grrrrrrrrrrr. RRRRRooooooooowwwwwwwwwffffffff!!!! GGRRRRRRRRRRRRRRRRRRRR

Hell Hound begins barking and growling, pulling and straining at the leash. The Benevolent Being is trying to control Hell Hound while cleaning up the mess. She looks up to see who is growling at her darling and sees the front two legs and head of a massive Rottweiler hanging over the fence of the yard behind her. “Just shut up and let me do this!” she says through gritted teeth as she warily eyes the Rottie while trying to clean up the mess. GGggrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrr She tries to plan what she will do if this massive bundle of canine teeth comes soaring over the fence. She thinks, “Well, it was nice having a dog for a while, at least, cause that monster will eat him!”

Hell Hound, unafraid, is trying to get to the Rottie. Finally, the mess is picked up, after the Benevolent Being was pulled away from it several times. She pulls Hell Hound along. “Just walk. Let’s go. Just walk. Good boy. Yes, you’re a good boy. Calm down and just walk.” Her heart is pounding. Two feet past the yard, the Rottie loses interest and Hell Hound once again begins sniffing the grass as they walk.

“C’mon, let’s go. Up the hill. Good boy!”

Turn the corner and Hell Hound looks to his left and stops dead in his tracks. A low growl erupts from his throat. The Benevolent Being follows his gaze and sees…”C’mon, boy. Don’t growl at the Virgin Mary and the Baby Jesus.” She pats him and reassures him. “They won’t hurt you. Let’s just walk right by them. It’s okay. Don’t growl. You’ll make the Baby Jesus cry if you growl at him. Don’t be scared. Jesus won’t hurt you.” Reluctantly, Hell Hound slinks by the Nativity Scene behind the chain link fence, shivering with fear and whimpering.

“Such a big baby. Rottweilers don’t bother you but the Baby Jesus turns you into a bowl of jelly.”

“Stop sniffing the bushes! Let’s go!”

At the bus stop, a bus opens its doors. “NO! We. Are. Not. Getting. On. The. Bus.” Hell Hound finally understands and decides to keep walking with the Benevolent Being.

An SUV pulls into the driveway ahead and Hell Hound bounds forward excitedly. The Benevolent Being stops and holds onto the leash for dear life. Hell Hound ends up dancing on his hind feet. “No! They’re not taking you for a ride!” Hell Hound looks at her sadly and whines. “I don’t care. You can walk just as well as I can.”

They continue onward.

The Benevolent Being looks to see how much further it is before they finish circling the block and sighs in resignation. They’re only about a quarter of the way there.

It’s going to be a long, long walk. The Benevolent Being wonders how it is that she got a dog that listens and behaves as well as her children do.

Tests

All my life is composed of tests. I've failed a lot of them, passed some others (and some of those passes were by the skin of my teeth). At the end, I hope I'll have passed more than I flunked. Coming out of life with a C average wouldn't be bad, all in all.

Anyway, enough introspection! I took my first final of college! Yes, I know it is only a touch over two weeks into it but this isn't your regular college. This is online and based on competency units. So, recommendation was to take the tests pretty much cold for two of the classes. Yesterday's test was on Foundations of Communications. Grammar, syntax, outlining, etc. Got a 94.

Now that we know what my strength is (verbal and keyboard diarrhea), I am taking the math exam today. I have been preparing for it and will do a bit of revising for it today. For those of you who don't spend much time speaking to someone from England who is taking classes, that means reviewing. Yeah, SO has affected me more than I usually care to admit. :) So, anyway, this will be on real numbers, slope of a line, graphing, equations, all that kind of stuff. I've been working on it and there is so much I've forgotten in the last too many years since high school. But, looking over it, I found it all coming back pretty quickly. I guess I had stored it all in long term memory.

Took the test at home while being monitored by someone somewhere else. They sent me a webcam to use. It was odd. Very odd. I was totally aware of all my movements and wondered what would happen if I waved to the webcam or stuck out my tongue.

Bird is really struggling in school. She was up until all hours this week finishing homework for end of quarter. She was even working on it until midnight on Friday on the off chance some teachers would take pity on her and count it. If they don't, she'll end up with a 1.9 GPA to start off high school with. I showed her how long it would take her to come back from that and she was horrified. Unfortunately, and I think it is a function of her condition, she has to learn the hard way. I can't smooth the way for her and make it all better. She has to do it. She is resistant to help and things need to be her idea on her initiative. I can't dictate. I can't even suggest. How to cope with this needs to come from within her, on her initiative, or she is closed off. However, I have discovered that if I suggest a course of action and she rejects, I often have to just wait a few days and she will present a course of action to me that is nearly identical to what I suggested but with her own twist on it. So, I've been suggesting how to get the homework done. She was working on homework not for this quarter that she got last week. And she is determined to do every extra credit assignment possible and, even, asking for more. The bad grades scared her. Sometimes, that's a good thing. It just hurts to watch the process.

The itching and bumps are much, much better. It was the chromium picolinate!

My mother is not doing well and is back in a severe depression, so much so that the assisted living facility is recommending admission for a time to try to get some anti-depressants regulated. That or a 24 hour caretaker which we can't afford. We hope to know more on Monday. I couldn't go to see her this weekend. I tried to work it out but finances and time constraints prevented it. In addition to the two tests this weekend, laundry, and cleaning, I also had to add on a trip to Sears to get Bird's glasses adjusted.

She was hit in the face in gym by a foam ball on Friday. Her face is fine but the glasses were knocked a little cattywumpus. With her prescription, even a little out of alignment affects her vision a lot and she was dizzy from trying to focus through them. They're fixed now, thank goodness. I once went to this site to see things the way she does without glasses. I put in her prescription and received the message "beyond simulation range". So, I started reducing the spherical measurement by .5 each time until I got to where it would show. It goes to +5. One eye is a +6 and the other is a +5.5 and we aren't done getting her eyes adjusted to what she really needs...which is a +7 or +8. Now you know why I sometimes use her glasses as magnifying lenses.

But, it's all good. Glasses are now fixed. I'll call my mother later today and talk to her. Bird wants to talk to her and see if she can cheer her up, too.

Oh! And while at Sears I used a $25 gift card from my Secret Pal to buy a pair of pants. Found a pair that fit (a little snug but they are the tummy slimming ones and it will give me incentive to get back into weight loss mode) that were on sale for $24.99, down from $40. When I checked out, there was a special sale thing going on where, if you spent more than $20, you got $10 off. So, I got my $40 pants for $16! Whoo hoo!!!! Then I stopped by the year round farmer's market and bought some eggs and fruit. When I checked out, the eggs (free range, thank you very much) were 40 cents off. I was afraid to try another store...my luck might not hold!

Okay, enough of this. Time to go solve some equations! Wish me luck on my test this afternoon!

My, how time flies...

I haven't done much algebra and such since high school. I've been refreshing my knowledge of it in the last week or so since school started. I have come to the conclusion that, just like in high school, I hate math. Don't get me wrong, Numbers was a cool show. I enjoyed it a lot. Charlie was a cool mathematician. I ain't Charlie.

In other news, Bird just told me that, when she was in gym, an upper classman, touched her on the arm to stop her and asked, "Will you go on a date with me?" Okay, she's a freshman. You're a junior or a senior. No, she won't go on a date with you. Furthermore, she doesn't look like a freshman, she looks like a fifth grader. She could be a ten year old genius for all you know. No, she won't go on a date with you. Furthermore, I am capable of getting a concealed carry license. This is my baby. You will not put your fingers near her again.

Overprotective? Me? Surely not...but I am so not ready for her to date. Not.Ready.At.All. I don't care if she is fifteen. I don't care. She's my baby. She can date when she's thirty and I'm dead. That will be soon enough.

And, in other news, I'm an itchy, scratchy mess. Started getting these itchy bumps last week on my forearms and lower legs. About a dozen on each arm. Some of them have grown into long lines. They are driving me batty. Been battling fleas on the dogs and I decided the fleas were going out to dinner on me at night when the dogs take over my bed. Spent the weekend bathing dogs (both are angels when they go to the groomer, hate when I give them a bath), spraying flea spray everywhere. vacuuming, washing sheets, etc, etc, etc. Dogs are much more comfortable but I'm still getting more spots. This morning, after taking my medicine and supplements, I had a brain storm and did some research. I started taking chromium picolinate for the health benefits. One sign of an adverse reaction is a rash and/or hives. Hmmm, that could explain why no one else in the house is getting this, wouldn't it? So, took all the chromium picolinates out of the pill minder and will not take them anymore to see if these things go away. If it does, it will be an "Oh, duh!" moment. Why didn't I notice before that the spots were on almost exactly the same places on each arm and each leg? They're not on my torso, not on my shoulders, not on my face...just my lower arms (and moving up to my upper arms) and calves. If it was fleas, it would be on my shoulders, face, torso, etc. I hope it is the chromium picolinate. I can't afford a doctor visit right now.

Called the pharmaceutical company about copay assistance. Love Nutropin! Got the card to pay for the copays today. That's $40 more a month for fruits and vegetables. :) Wish Vyvanse was so helpful. Can't find any help at all for copays. With the specialist visit copays going up, $80 a month for Bird's medicine is really hard to come up with. Got half that sorted now looking for help for the rest.

My Secret Pal at work is the best. She gave me a USB Himalayan Salt Crystal Lamp. I don't know if it works or not but it sure is pretty sitting here on my desk. :)

So, as soon as my books come, I will be diving into Internet Business Fundamentals. I do have to ask, "What have I gotten myself into?" Scheduled my first two assessments and, if I pass those, I'll be at 3 courses down, 3 to go for this term and then I can start working ahead for next term. I'm not too worried about the essay and the research courses...it's the IT course that is stressing me right now.

Oooooo, pretty colors on my lamp :) Reduces stress.

School daze...err, days

So, waiting for tomorrow when I have my phone call to set what courses I'll be working on first. Excited but a little scared. I'll be fine. Well, that's what I keep telling myself...

Oh! Family across the street had a little yard sale and I missed it. I hate missing yard sales. Anyway, later on I saw this table out in the tree lawn. I went over and asked about it and he said to just take it. They didn't want it anymore and it didn't sell in the yard sale. Score! It's got a few dings in it but it is a solid wood table! Will make a great study space!!!

Isn't it great? My chair is a little low but a cushion will help with that. I could paint it or refinish it or just leave it like it is and pretend I want it that way. That would be shabby chic, right? As opposed to most of the rest of my stuff that is just shabby...

I love my new desk/table!!! And I love the price of it...free!!!!!!!! Have to be careful with free, though. Checked out the free listings the other day and someone had a mattress and a sofa for free. They were honest...said they saw some bedbugs a week or two ago but haven't seen any since. Oh, yeah, I think I'll just right on that one!

Tomorrow at work, things will be busy. And I have my performance review. Sure, no stress there...

Okay, time to go check out some other message boards for school. Maybe I'll get more of an idea what I'm in for...

School's In!

I officially started school on the first. I have already finished going through my first course! Okay, so it was the orientation course but, still, I finished it! Well, kinda. A couple of other things I have to do first like set up my course of study but...oh, quit making me be honest!

Called and talked to my mom tonight. She sounded much, much, much better - even happy. It did my heart good.

I don't know where I've gone wrong with Bird, though. She went to a football game last night. She had no clue what was going on but she enjoyed herself. I don't do football. I went to all the football games in high school but that's because I was in the band and I had to. I read a book between songs. But, she's getting into this whole high school thing. Went to the homecoming game. Tonight, she's at the homecoming dance. Thank goodness for Plato's closet. Found not one but two lovely dressy dresses for dances and both fit her beautifully. Although, it is frightening to think a more traditionally built teenager would fit into these dresses it is also wonderful to find something age appropriate that fits her. I don't think I ever wore a size 0, btw...

Waiting...

Waiting for Friday for school to start. I'm nervous as a long tailed cat in a roomful of rocking chairs.

Got the new-to-me washer yesterday and got the laundry room cleaned up and the new washer hooked up. Great to be doing my own laundry! Of course, there is always a glitch. The cold water faucet is leaking and I will have to replace it. That is going to be tomorrow night's activity. I hope. the shut off valve isn't working well, either. Grrrrr That means I have to shut off all the water to the house to get this done. Grrrrr

So, this week I have a meeting with Bird's teachers, ADHD doctor appt., work and school starting. It is a full week.

Hit a couple of garage sales hoping to find some shelves. Too many tsotskes and not enough display space. I will stick my fingers in my ears and sing "It's a Small World" very loudly if you start telling me I have too many tsotskes and I need to thin them out.

Not a single suitable set of bookshelves or anything that would work. However, I get brownie points for not buying that roll top desk I saw. Always wanted one. I passed it up, though. I was a good girl.

However, I did find a moon chair for Bird and she's been wanting one. And a new dressy dress. And a shirt. And a housecoat. Bird made out like a bandit. Also found a laptop over the lap thing for working in bed. Has legs. A light. Neat little thing. And I found a new coffee cup. Yeah, I know. I need a new coffee cup like a hole in the head but this is an identical one to one I had years ago that was stolen. It was my work cup and someone stole it. It says, "Stress: The almost uncontrollable urge to beat the crap out of someone who desperately deserves it".

So, no shelves.

I got the cats a new covered litter box, too. One of the cats is having an issue getting downstairs to use the box and I thought a covered one might help keep the Big Dog out of it. He likes the tootsie rolls he finds in there. Cats hate it. Just my luck. Will not use it. My cats are irritating.

C'mon Friday! I want to get this started.

New Beginnings

I think I am a glutton for punishment. Really. As if I don't feel overwhelmed enough, I am now going to start school. Add on 20 hours of studying or so a week. It'll almost all be online, though, so that should be interesting. I'm going to Western Governors University. Just when all the fall shows are getting ready to start. I am a glutton for punishment.

Oh, well...I have two weeks of relative quiet before the new insanity is added on. October 1st is D Day. I'm actually excited and want to get a move on with it. Next weekend, my desk gets sorted so I can be all ready for the 1st.

Bird has been having some homework completion issues. She doesn't think her ADHD meds are working well. First clue? She is always hungry. Well, that and the whole not getting homework done thing.

We'll be doing homework together in the evenings! Maybe that will help with the completion issues. It will add pressure to me, at least...

Wasting Time

I had two extra days off this week (love these four day weekends) and last night I felt very virtuous that I put down in my Outlook Task list a lot of the things I really needed to get done today. I even put in alerts to remind me to actually look at the task list. Started the time at 8 AM. So, got up on time, got Bird to school about on time (we're having trouble with that). When I walked the dogs, I multi-tasked. While they were doing their duty, I did squats. I hope no neighbors were watching. I'm sure it looked a little odd. Then, while waiting for Bird to finish getting ready, I did more squats. I did 30 squats this morning, nonexistent readers. Thirty! Anyway, when I got home from taking Bird to school, I booted up the computer and the alerts started popping up. I looked at them, honest. I really did. Then, I decided it was a really good morning for a nap so I turned off the computer and did just that.

Don't judge me. It was wonderful.

Another part of the morning, I spent looking through a new webcomic I followed a link to from one of my regular web comics. I only really follow a couple of web comics. I keep forgetting to check them. But one I follow religiously because it is written by a long time online friend of mine - Life's a Witch. It makes me smile and I'm very proud of Witchy.

Well, I've added in Lackadaisy Cats. I love the art in that one. The storyline is good, too.

Well, I followed a little posting from Witchy and have now added a new webcomic to my reading list. Don't Feed the Geek. I sat here and read them all. I like to pretend I'm a geek.

Well, anyway, I decided I couldn't put things off any longer so I actually did all my tasks. Made the next endo appt, did some overtime, finished up some paperwork for the online university I want to attend.

Thought about calling my mother but the last phone call didn't go well at all. It was so sad. And was too stressful for her. She knows something is wrong with her memory and she is raging about it. I don't blame her. She is certainly not going gently into that good night.

I should be doing more overtime. However, I decided to while away the time here instead. If someone stops by to read this, leave me a note so I don't feel quite so lonely :)

Darkness descends

Labor Day was difficult. Went to see my mother in her new digs and she was not a happy camper...all day long. It was long and draining and difficult, capped off by her blatantly refusing my goodbye hug.

Then, at my brother's a little later, my sister in law asked me when Bird was getting her learner's permit. I was more than a little shocked and hurt. Months ago, I had sent a long, detailed email about what our life is like and how it differs from their lives with their 15 year old. I had discussed the difficulty with the decision and that, at this point, it was an "if", not a "when". It is still an "if".

I couldn't shake it all day today. It preyed on my mind, weighed on me like a palpable presence. I was nearly in tears all day. At random times, the thought would pop into my head, "Doesn't anyone else care enough to find out what our lives are like now?" Then the old resentments would start creeping in. All those months I was asking for help. All those times I was telling them that things were deteriorating. No one heard.

Being invisible and unheard is hard.

It didn't help when the case manager from the insurance company called with some ideas to help with the copays for Bird's treatment. One of the places suggested helps with copays for growth hormone injections...if the patient has growth hormone deficiency. The case manager doesn't know or understand Turner Syndrome. I thanked her politely for her efforts and hung up.

All I wanted was to get home, to be in my cocoon, make it through the evening and, hopefully, find a chance to let the tears out when Bird couldn't see or hear me.

Hop in the car, put the key in the ignition. Rrrrrrrrrrrrrrrrrrr...click, click, click. Rrrrrrr...rr...r. Dead battery.

Thankfully, my handsome and talented nephew was able to come and jumpstart my car and follow me to the car parts place to get a new battery. My twenty minute trip home turned into two hours. At least I got home.

My nephew is marvelous. He works in movies. If you need a set dresser, drop me a line. He's good. He worked on Up in the Air and other movies. He also makes movies. Has made them for years. I told him I need to remember to buy a lottery ticket, well, a winning lottery ticket. Then I'd fund him making a documentary about Turner Syndrome.

Oh, well...here it is 1:30. Woke up and couldn't go back to sleep. I'm peckish and don't know what I'm peckish for. Think my son cooking himself a hamburger woke me up. it smells good.

I want hot wings. They would make my day much sunnier.

One foot in front of the other

So, I was browsing around online the other night and visited some other blogs I read occaisionally. I wasn't wasting time. I was just overwhelmed and really wishing that, once in a while, I could be underwhelmed. Instead of doing all the things I should have been doing, I was just browsing and reading blogs. I sometimes read Moderate Means, Thift Store Mama, and Laundry for Six, among others.

As if I wasn't feeling overwhelmed enough, Moderate Means and Thrift Store Mama both have diet blogs. Hmmm, guilt set in. I haven't been doing my exercising. The eating is going okay it is the exercise I have really slacked off on this month. I can tell, too. I'm crankier.

A new leaf today. I was going to exercise. Laundress Sue had mentioned the Couch to 5K program before and I tried it once but it so did not go well. I was going to do that. And, yes, there is an app for that. Thank goodness. No way I could concentrate on not tripping and time the walk and run portions. I made a deal with myself. If I did this, went out and did the exercise, I could have hot wings. They are my downfall. I haven't had any real ones with breading and everything in a while. I crave them constantly. I do the exercise, I get hot wings. I'm pitiful. I have to bribe myself.

Anyway, I got in my exercise gear and, when Bird was picked up to go to a carnival with her mentor, I went to the track. I had my sweat band, wrist band, towel, water bottle, iTouch complete with C2K app and music progammed in. I stretched and warmed up. Fired 'er up and got to walking. First running segment my hand went numb. This is not normal. Took off the wrist band. Feeling came back. Great, I'm too fat to wear the wrist band. Made it most of the way through that segment, though. Walking segment went okay. Next running segment, my right baby toe started going numb and tingly. Grrrrr. I decided to walk through the next running segment.

As time went on, my right foot felt worse. All the toes were going numbish and the bottom of my foot. Meanwhile, my left ankle started hurting. That was probably because I was favoring my other foot a bit. I decided not to do the running anymore. I just walked faster during the running segments. I made it all the way through, though. So, it will take me longer than 9 weeks. I can live with that. I'll get there.

I think what happened with my foot is that I wore those shoes all day at work and my feet were tired of them. They are the Skecher Shape Ups and are heavier, to me, than other shoes. I think I also need to stretch and warm up more. And maybe it was too much to get into all at once. First week, I'll do it walking, slower and faster. Next week, start doing some running. Build up a little slower. Adjust and move on. As long as I'm putting one step in front of the other, I'm not sitting and vegetating.

Yes, I let myself have hot wings. I paired them with a nice salad with fat free dressing.

Dancing

This just made me smile...I found my Sunny Street and my Silver Lining today...

An unfortunate side effect...

Wednesday, Bird turns 15. She wants to get her learner's permit. I'm unsure of this. What would be the harm in her getting a learner's permit? I mean, I don't have to let her drive or anything. It's just a card with her picture on it like all the other 15 year olds are getting.

But she will want to drive and that scares me. This is the person who was telling me a long involved story while we were driving somewhere one night and stopped dead in the middle, bursting out, "Look! The moon!" She can't reach the pedals. Look up "distracted by shiny objects" in the dictionary and you'll find her smiling face.

So, what do I do?

She wants to get a job. I wonder who will hire her when she is so small and looks so young? How will she run a cash register?

So what do I do?

I worry, that's what I do. I'm a mom. I worry.

And I get her the driver book so she can study it and go take her written test and get her her learner's permit so she can be just like all the other 15 year olds with learner's permits. I don't have to let her drive yet. But she can have the little piece of plastic with her picture on it. Which, in all likelihood, she will lose but it will be a small price to pay for her to be just like all the other 15 year olds.

Because, in the end, she is 15. No matter what else is going on with her, she is 15. She will grow up, graduate from high school, God willing go to college and become whatever she wants to be and I have to stop protecting her some time. She's got to learn to stand, or fall, on her own. The falling part is what I worry about. She's not. She just gets herself back up, dusts herself off and keeps on going.

And I worry.

A new day

It is nearly 3 pm. I have so far today talked to my SO, washed some laundry, did the grocery shopping, got Bird up and doing some chores, updated the desktop (since it hasn't been on in weeks, it needs a LOT of updating).

The doggers are busily laying on the rug, shedding fur all over it. Good thing I haven't vacuummed yet or I would be irritated.

Need to make my list of things to do this week. Call the post office and see if I can find out why two extremely important pieces of information didn't get here to me. One was Bird's ADHD medication prescription. Enclosed with that was paperwork the doctor needed to fill out so I could get some help with copays. And it is lost somewhere. The school was thankful my wonderful sister in law was able to brave the terrors of driving down to Children's Hospital to pick up a replacement.

Another thing on my list is briefly beating myself up for not being able to deal better with my mother and not spending today with her before she moves. Not allowing myself to beat myself up more than for a few minutes. I've done what I could.

My next self-improvement project is quitting smoking. I'm only allowing myself a 5 pound weight gain in the next four months while I'm working on this.

Put up the ashtray. Tomorrow morning, smoking will only be allowed outside. That's gonna kill me. But that is the first step I am taking.

Tomorrow morning, back on the Wii regularly and using the resistance band, balance ball, weights, stepper. Create a schedule of when I'm doing what. Stick to it.

Also tomorrow, I call my doctor to find out why my diuretic refill is for half the dosage it has been for at least the last year. I had talked to him about starting to try to wean myself off but it hasn't been going well. My feet and legs still swell. After two days on the lower dosage, it was starting to hurt to walk and I had put on four pounds. I doubled up on it yesterday and today and the weight is back down and my legs feel better. I need to get in better shape and lose more weight before I try to reduce the dosage.

Work. Oh, that's a given. But, I'm looking forward to the week coming up after this one. Three day weekend, two day work week, four day weekend.

Get more work done figuring out the financial aid for college. I'm working on being able to take courses from Western Governor's University. Keep your fingers crossed for me.

Bird is having gastrointestingal issues. I will have to wait until after the first of the year to take her to yet another specialist. Ice cream does it to her...but not all ice creams. Just the less expensive ones. And possibly Dairy Queen. Might have been the wedding cake at her cousin's wedding, too. Oh, and now it seems to be chocolate fudge pop tarts but not brown sugar cinnamon. We are keeping records and I am researching who to take her to. Allergist or gastroenterologist? I'm not sure.

Make a study place. Well, two of them. One for me and one for Bird.

Start learning to meditate. I need order in some aspect of my life. My mind and soul would be a good place to start.

And, on Wednesday, we have Subway for Bird's 15th birthday! I hope the cake I got for her doesn't mess with her tummy.

Fall is on its way

Yes, it is August. It has been two months since I have blogged anything (well, what is in my head doesn't count because you can't read that...not that you'd want to because it's kinda messy in there. Kinda like my house. But I digress...)

Things have been busy around here. My mother has been living with me and, over time, she has gotten more and more difficult, unhappy and demanding. She wanted to move into a senior citizen apartment complex and we'd found one she really liked. She was on the waiting list for months and months. She was pushing me to call and find out where she was going to get to the top of the list. Finally, she did. Yay!!! She would be happier. She'd have her own place. It was close to my work and closer to where my brother lives. This would work!

Well, except it didn't. I ended up on empty. Dealing with my mother and her issues and Bird and her issues and work had used me up. There were no reserves left. I was in trouble at work for all the time I'd missed. My brother and sister in law took over the doctor visits for my mother. No one could take over the doctor visits for Bird. I had to go on them. We had the call, an apartment was ready.

But my mother was deteriorating. She met me outside every day when I came home from work, ranting at me that she couldn't stand being alone all day. Bird was horrible. I was horrible. Every day. She called Bird nasty names. Bird gave up even trying to be nice. Social interactions are sometimes pretty difficult for Turner Syndrome girls and she was ill-equipped to deal with the deteriorating situation.

We made plans to move her. Another brother and his son came down to help. We moved all of her furniture. She was mean and nasty the whole time. Her memory was deteriorating worse and worse but we had to let her try. When it came time to move her, she wanted to know where her furniture was. When we got to the apartments, she refused to leave the car because her dog couldn't move out there yet. She was bizarre, unreasonable. We ended up taking her to the emergency room for a psych evaluation. She was talking about hurting herself, running away and living on the street, all kinds of bizarre things. That was when a doctor mentioned the word Alzheimer's in connection to my mother.

She finally went into the apartment. We hoped that, with support, she could live there for a time. She quit eating. My brother was over there the majority of every day. She had a sinus infection and that didn't help things. I went over during lunch to cook for her. She wouldn't eat. She verbally abused all of us, saying nasty and horrible things. Finally, the next week, I was able to take the dog out to her. The dog is a rescue dog and has trust issues. She's always been very attached to my mother. At home, without my mother there, she was a different dog...she didn't bark as much. She wasn't as jumpy and touchy. We realized she was protecting my mother.

Anyway, I took the dog out at the earliest opportunity. She had to be seen by the staff and approved before she moved in and since the dog knew me, I was the one who needed to take her. We moved my mother July 17th. I took the dog on the 26th. My brother had taken my mother to the doctor on the previous Thursday. The day after the dog went to stay with her, my mother refused to get out of bed. Her hand was shaking and she was lethargic, getting unsteady on her feet. She was admitted to the hospital.

They spent days doing tests. We would visit and moments after we left, she would forget we had been there. Per the doctor, we had to admit her to a skilled nursing facility.

Obviously, she wasn't happy. She accused me of "kicking her out". She accused my brother of stealing from her. She accused me of doing this to her to take her dog from her. Trust me, I didn't want this dog.

Since this time, she's been in the hospital and back to the skilled nursing facility again. She's eating better. She has worn us all out. Another brother found an assisted living facility near him that she can better afford and that will be better suited for her. She goes Monday, a two hour drive away from me. I keep the yappy dog. She's growing on me.

I'm tired. I'm empty. And during all this, taking care of Bird's needs. The new 504 plan for high school. I finally heard back from Stanford and have sent them all her pertinent medical info. Now, we wait to hear if she gets in or not.

Meanwhile, one of my lovely nieces was married earlier this month. It was beautiful and a wonderful day. Well, except for my mother refusing to go to the wedding then calling later and yelling at me because no one came to pick her up and she'd been ready all day long and the 45 minute drive each way to get her for the reception and being berated the whole way home. But, while she was at the reception, she was fine and had a good time. It was good to see her "there".

The other day the insurance company called to tell me all about a new "free" service (with the premiums and copays I pay now, I don't really think its free). This service is a case manager for complicated or chronic medical conditions. I told this very nice lady that I needed it Jan of last year...someone to hold my hand as I started on this Turner journey with my daughter. I mentioned in passing about the issues with my mother. This very nice lady told me about the mental health services available on our health insurance plan. I don't need that. I need some wine. I think I'll head over to Laundress Sue's house.

Been a while...

Oh, I started with good intentions. Of course, as they say, the road to hell is paved with good intentions. Guess I know where I'm going, huh?

I got sick back in March/April and then had company and then...well, just way too busy.

So, starting again.

I remember one holiday at my in-laws' house. Ex in-laws now but still love them to death and have frequent contact with them but I digress. My oldest daughter (we'll call her Diva, for the sake of protecting the guilty) laid in the bedroom crying because Uncle A and Uncle C were not there. I pointed out to her that she was spending so much time mourning who wasn't there for the holiday that she was missing spending time with who was there (namely Uncle B and Uncle D).

I've been thinking about that incident today and realized that, just maybe, that was something she inherited from me. That something would be not being happy with what you have but mourning what you don't.

In my front yard, I have a rough leaf dogwood. I love this little tree/bush...for about 3 or 4 weeks of the year. The rest of the time, I'm ready to take it out. During those few weeks in the spring, I am watching the branches daily, breathlessly waiting for the buds to appear and then the tiny little clusters of flowers blooming. I love those little clusters of small flowers. Then, they are gone for another year.

Another thing that has stopped me from my blog activities is that what I write is never how it is in my head...I think of the most wonderful turns of phrase, the most amusing anecdotes, the most poignant events. Unfortunately, that happens when I am driving or working or otherwise engaged where I can't get fingers to keyboard (forget pen to paper as I can't read my own writing anyway and can no longer spell unless I'm typing (and no, I do not rely on spell check...). By the time I sit down to write/blog, what I thought of is gone like the little flowers from my rough leaf dogwood.

Running and getting nowhere

Well, that isn't really true. I went 1.05 miles and learned some lessons.

I started the Couch to 5K program. And, yes, there's a app for that.

I couldn't do the first day completely. I'm not beating myself up over it. I'm just taking it a day at a time. I did two and half of the running segments and did 24 minutes total. That is more than I did yesterday. I figure when my thigh goes numb, it is time to stop running. Next try at it, I warm up more and shoot for another of the running segments and completing the entire 33 minutes walking where the running is on the other segments. Last weekend, I walked 6/10 of a mile. This weekend, I walked/jogged 1.05 miles. That is an improvement. That is progress. So what if the 9 week program takes me 18 weeks or 27 weeks? As long as I do more, I am doing better.

Oh, and I learned something else, too. Do not take a child with ADHD with you, especially when she hasn't had her ADHD medication and is babbling the whole time. This is not conducive to exercise.

On Teenage Crushes and Arrogance

One of the things that has given Bird the most joy in the past year of shots and changes is the singing group Celtic Thunder. She loves the music and avidly watches all the shows on PBS. When the latest came out on dvd, I bought it for her and she watched it over and over. She loves Damian McGinty, the 17 year old member of the group. She is interested in all things Irish now, which is a good thing because we are of Irish descent.

We saw that the lads were split up and traveling all over the country to participate in PBS pledge drives. Damian and Paul Byrom were coming to St Louis. I finally decided to take her down there and see if she could get an autograph and maybe a picture with them. It would make the week so much better for her.

We got down there about 6:30 and missed them going in...by minutes. Grrr. I considered and then decided we would go back about the time the taping would be completed. Came home for half an hour and then jumped back in the car and drove back down. So we could wait in the car, I paid the $8 to park in the lot where the bus they were traveling on was.

It was chilly. We stood out there for 20 minutes or so and then the volunteers started coming out. Finally, there came Damian and Paul. Bird was so excited.

Paul came rushing by, saying meaningless things and made a beeline for the bus. There were only six people there. Just six, three of them children.

Damian was a perfect gentleman. Obviously, they were in something of a hurry but he graciously allowed some pictures and signed some autographs (including Bird's cast). She was thrilled.

She is not so thrilled, however, with Paul. She doesn't want his solos on her mp3 player. Her feelings are hurt.

This was such a huge contrast to Harry Chapin. I remember when I went to one of his concerts in college. He went to the lobby after the show and signed autographs for everyone who wanted one. He knew that these people took time out of their day for him, paid their money for him. He was grateful and gave them a few precious minutes in return. Performing is a two way street. There are some performers who realize that.

Performers should realize that there are two essential parts to a performance. One is the person who does the singing/acting/dancing/whatever. The other essential ingredient is someone to watch/listen. Celtic Thunder wouldn't have hit the number one World album on the charts without people like Bird. The members of Celtic Thunder wouldn't have hit the top six spots on the silly top musician on Twitter poll without people like Bird.

The silver lining and sunny street of this is that Bird got to briefly meet Damian McGinty, get her picture taken with him, have her cast signed by him. That far overshadows the pain she got from being ignored by Paul. As she said, she got the important one. And, Bird learned an important lesson in how one can hurt someone without realizing it with arrogance, conceit and self-importance.

Pink and Plaster...

Well, it has been an eventful few days. First, I get a call on Thursday that the furnace is out and my mother is freezing to death in the 65 degree house. Run home from work to handle it. In and amongst calling the gas company to check for a leak and finding a furnace repairman and trying to get some work done, I get a text from the boy that his knee is killing him and he needs some ibuprofen. He's at work. Drop it off on the way back to work. Get back to work and get back into the zone. Bird txts me she's on her way home, as per usual, but, as is not usual, says she sprained her wrist. Call her and find out she hurt it in gym, right before lunch. No call from the school. I'm not happy, not happy at all.

When I get home, I see the wrist ace wrapped, badly, by the school nurse. She can't rotate it without pain. If it hangs down to her side, it hurts. Touching it hurts. It looks like there might be a bump on one side but I'm not sure. I'm torn. Call the doctor or not?

Get up in the morning and make the decision (after consulting with some online friends and doing some research). I'll take her to work with me, call the doc. That way, I'll have her right there and won't miss as much work. I can also watch it for swelling and discoloration. Since she's on the growth hormone, I know there is a slightly higher chance of broken bones. I email the coach (it happened in gym) and the school nurse trying to, as politely as possible, express my displeasure that I wasn't notifed about the injury. Notify the principal that I wasn't called when she was hurt. Get to work and Bird settles in with her DS and I get to work. Call the doc and get an appt. Plan the afternoon. Oh, to live in the land of denial!

Get to the doctor's office and he sends us next door to the xray place. Tells us if they come back with a white piece of paper, go home and keep doing what we're doing. If they come back with a white piece of paper and an xray, come back to the office. We wait about five, ten minutes and look up to see the xray tech coming back out...carrying an xray and a white piece of paper. Damn. "subtle nondisplaced fracture of the distal dorsal ulna"

Back to the doctor's office. While we're waiting to find out about an orthopedic appt, call the principal back to let him know the wrist is broken. He sounds very unhappy.

The ortho appt is out by my work so head back there for a half hour before heading to the appt. Get a touch more done. I so do not need to miss more work. Get to the packed ortho office on time and...we wait. Finally, an hour and a half or so after our appt time, we're taken back. The fracture is on the growth plate. Fortunately, it is a small break and isn't out of alignment and should only need a cast for three weeks. The cast is PINK...very pink.

And there, in a nutshell, is part of the problem. My child has special needs. They may not be visible but they doesn't make the needs any less important.

I have spent a lot of time kicking my own ass this past year for all the things I missed in my darling youngest's first thirteen years. In kindergarten, she fell off the slide at school and hurt her neck. I wasn't called then, either. The nurse thought she was putting on for attention. She was always going down to the office complaining of feeling bad...her tummy or a headache or her legs hurt. So, she ended up with a severe spasm in her neck that required a neck brace for several days, codeine and a trip to a physical therapist for evaluation. Now, we know that her legs hurt because of the flat feet. Now we know that flat feet are more prevalent among girls with Turner Syndrome. Now we know that the urinary tract infections she had are another commonality. The scoliosis, her eyesight, the ADHD. The stomach issues and headaches are symptoms of the generalized anxiety disorder. But they're subtle, they are hidden, they aren't blatantly in your face so Bird suffers.

And, if she didn't have Turner, the growth plate would have been stronger and this really would have been just a sprain and not a break.

So, Bird has her pink cast and she is pushing forward...determined to not let it slow her down. And I obsess and worry. I make lists of everything I need to do. Change my mother's dermatologist appt, call the endocrinologist to let him know about the break, re-order the growth hormone, figure out how to miss as little work as possible to get her back to the doctor to get the cast off and the wrist re-xrayed.

I think I need to make a list of everything that is right...what are the silver linings and the sunny streets. Bird did well enough on her state testing last year that she is getting an award this week at school at a big to do assembly. She is cheerful about the cast and not upset or moping. The furnace is fixed. I saw flowers growing today. The washer is still broken but the boy took my laundry to his house and washed it. I took a nice walk around the block with the dogs and my Bird. My sister in law thinks she can bring Bird to me for her next ortho appt which will mean less time off work.

Things could definitely be worse.

Another day...

So, it's another day. Not a manic Monday, at least.

Looking for the sunny side can be difficult at times. Oldest comes into town for an early birthday celebration. We get 15 minutes (so she can pick up her present) and then we get to take her out to dinner at a restaurant that refuses to release full nutritional info for their offerings. They only offer it in states where it is legally required. Asked the server if they have anything in the store. She asked her manager who said it was available online. Uh...no. So, I tried to be safe and ordered one of the vaunted under 550 calorie meals. So salty might as well of been drinking seawater. Grease all over the plate. Ugh...but it was still lower fat, it seems, than some of the Weight Watcher offerings.

Needless to say, I was in a horrendous mood.

I know that, in a way, I'm being unreasonable. But, I have explained to oldest before how much it hurts when she marginalizes me and ignores me during the brief times she is home. She doesn't understand it and doesn't get it. If my own kids don't want to understand what I am going through and, maybe, give me a little help, how can anyone else?

So, today, I need to go do laundry, to do grocery shopping and some work for work. But, at noon, I sit here. However, in my defense, I did walk the dogs around the block (six tenths of a mile) and I haven't been able to do that in a long time. I also did the Wii Fit for a while.

Yesterday, I did research and discovered that fixing the washer will require a part that costs app $150. I don't think that a 15+ year old washer is worth that. So, I am in the market for a used one.

Anyway, to get my peace back, I must discover the silver lining and sunny street. I walked the dogs around the block. My back didn't hurt doing it. My dog is sleeping quietly beside me here on the couch, cuddled up (which is saying something for a 60+ pound doggie). The tsunami was, apparently, pretty much a bust. That's a good thing. And I am getting physically stronger and more in shape. I just need to work on the mental and the emotional. But, I'm getting there.

Quiet

I like this time of day. It is early. No one else is up. The dogs are sleeping quietly, not understanding why in hell I am up out of my nice warm bed. Big Dog is sleeping here on the couch beside me, over his brief miff that I made him move from the nice comfy spot at the foot of my bed when I got up.

Cars aren't driving by. No one is walking their dogs by the house causing the dogs who live here to become offended at the temerity of those other canines to actually sniff and do other unspeakable acts in their yard.

I can hear the refrigerator cycling on and off, the sound of the furnace kicking on. It is blessedly quiet.

I used to prefer nighttime...about ten or so at night on weeknights, later on weekends. Now, my mother tends to stay up as long as I do. That has spoiled the night time and the dark for me. I loved the dark.

But, now, I can see the world gradually lightening out my window, hear the birds awakening.

That's why I set my alarm on the weekends, to see the world waking up and have my quiet.

Oddities, strangeness and control

It is odd being the parent of a child with special needs like Turner Syndrome. After all, she doesn't look like she has special needs. She has two workable legs, she has two workable arms. She has all her fingers and toes. She has two ears, two eyes, a nose and a mouth. Oh, yeah...she has a mouth. What a mouth!!!! She is not developmentally disabled and is, in fact, quite bright. Okay, sometimes too bright for her own good. Matter of fact, too bright and too mouthy sometimes.

Nevertheless, she has special needs. I'm still getting used to that.

Organization is a big thing. Knowing where I need to be, when I need to be there, what I need to take and who I need to take with me.

I tried the calendar and contacts on my computer. Unfortunately, I would go to work, need to make calls and didn't have the correct info with me.

So, I tried a notebook. Kept losing my ink pen and who can really read my handwriting. Trust me, there is a reason I type everything I can.

So, I thought of a pda. Unfortunately, they are expensive. The iPod Touch was my solution and it has been a lifesaver. Contacts and calendar synced with my home computer. I found a database app where I can create different tables for info - my mother's medications and drug allergies, Bird's medications, doctor visits and test results. I even track height and weight for her in there.

I use the stanza reader and download books to read while sitting in waiting rooms. No, I'm not completely organized but I'm getting there.

Since I can't afford a personal assistant, I am doing the best I can. For example, so far this year, these are the appointments I've had.

Jan 7 - psychiatrist (which ended up being canceled due to weather so we did a phone consult)
Jan 18 - geneticist
Jan 20 - Bird to the dentist (where the dreaded B word was uttered...braces)
Jan 21 - my mother to the doctor
Jan 25 - appt for my mother at a senior citizen's housing complex (she wants to move where there are more people her age and where I don't keep turning the heat down to a tolerable level)
Feb 1 - me to the dermatologist
Feb 4 - psychiatrist
Feb 17 - pediatrician for a problem with Bird's ankle hurting
Feb 17 - orthopedist for a problem my mother is having with her shoulder.

Yay!!! I'm done until March 11, March 29, March 30, March 31, April 5 and April 29th unless Bird ends up needing to go to a specialist.

My life is on the iTouch.

Literally.

No, really.

After I was in the hospital back in October (possible H1N1 and pneumonia...it wasn't fun) and was put on steroids for a while, I gained weight. I'd been struggling trying to lose much needed weight anyway and this just made it worse. So, yes, I was one of those people who made a New Year's resolution. But, I made it an action plan. Had an app named Lose It! and I started entering what I ate. Everything I ate. Then, because I have some obsessive tendencies of my own, I carried it a step further. I created an excel workbook. One tab tracks weight (with a graph with trendline for those wobbles when I go up slightly). Another tab tracks BMI. Then there is the tab where I enter the daily average of a week's intake and compares it to the optimal diet. I can see with this where I need to make adjustments in my diet. Another tab tracks measurements in key areas and gives me a cumulative weekly change. Final step of my action plan? A Wii. Yes, I bought a Wii and Wii Fit Plus. I do my best to do some every morning and every evening. A pocket pedometer helps me track my steps per day. I do yoga, strength training, balance games, aerobics. I also bought Skecher's Shape Ups which are amazing! Really, I cannot brag on these shoes enough. I have arthritis in my back and, when I walked too far, my left thigh would go numb. Since I've been wearing these shoes, my back hasn't hurt and no numbness. They are absolutely and completely amazing.

Since I got out of the hospital in mid-October, I have lost 15 pounds. Since Jan 1, I have lost 10 pounds. Since Feb 1, when I started the Wii, I have lost 7 pounds.

My action plan is important to me. Part of that is because of the good results I've been getting. Part of it, though, is that I am in control. I can control what I choose to eat. I see almost instantaneous feedback on how I am doing. I eat too much of the wrong thing one day, it reflects in my weight the next day. I know if I eat spaghetti, I am going to feel sluggish the entire next day. If I eat tomato soup, I will bloat up a little from the higher sodium content.

I am in control. And control helps.

People may not look at Bird and see special needs. They may look at her and treat her like a 9 year old. I can't control that. I can't be responsible for that. But, I can control my activity level and my food intake. I can be responsible for that.

That's another silver lining right there. Those sunny streets are all over, if you just know where to look.

Therapy...

Okay, I probably needed some therapy during the last 13 months. I've been rather boring, I think. I wanted to talk about the diagnosis, the ramifications, the frustrations, the fears, the anxiety. I did quite a bit but not like I really need to. It's hard to explain. I've been boring because I did talk about it a lot but it was in the course of conversation, not someone sitting with me and holding my hand and letting me get it all out. I needed someone to, just for a time, make this as big a deal for them as it was for Bird and me.

I remember telling one of the doctors I needed someone to tell me exactly what I needed to do when...it was all to overwhelming. He told me there was a chart in one of the pamphlets he gave me. No, that isn't what I meant! I meant I needed someone to take my hand and say, "We're going to do this now" and tell me how to deal with the problems and road bumps...because there are always road bumps.

I had flashes of what I needed along the way. A friend who took the time to talk to me on the phone and explain the karyotype results to me, the process of extracting and counting the chromosomes. My friends who acknowledged the difficulties we were dealing with with the beautiful gift basket. The school that listened and has been amazing. One of my brothers who picked up some of my mother's doctor visits. My son who lives in town who helped when I went out of town on vacation and when I was in the hospital. My significant other who took me on these marvelous vacations and listened patiently.

But that closet door I spoke about in an earlier post? It's bulging a bit at the frame, things are leaking out.

Driving to work the other day, there was a news report about teen pregnancy rates and costs. My eyes filled with tears. That was a worry I didn't really have. The chances of Bird having children that she gives birth to are not that good. I began to grieve the nonexistence of grandchildren I wouldn't have.

I see the other girls in her class and I ache. I see other 14 year olds, growing into physical maturity, and I hurt. Going into a restaurant and Bird being handed a kid's menu.

I'm having trouble seeing the silver linings and sunny streets right now. The crisis is over and I can now start to process and grieve what I thought would be and accepting what will be.

But, I look back over the last 13 months and I can pick out the silver linings and sunny streets. Bird is now a bit over 4'8 3/4" tall. She has grown 2 3/4 inches in the last year. Her school has put in place a 504 plan to deal with learning issues. We heard of a study at Stanford for girls with Mosaic Turner Syndrome studying the learning differences and are waiting to hear if we got in. Bird is accepting and matter of fact. The children issue doesn't affect her for the moment...she has been adamant for some time that there are too many children without parents out there and she wants to adopt. Her classmates are accepting of her and treat her as a 14 year old, no matter if she looks like a 10 year old. Her latest bone age was 10.5 years so we can still do the growth hormones for a while longer which will not only increase her height but help to strengthen her bones. Bird and I have been having fun working out on the Wii and have a friendly competition going. Bird has goals and ambitions and a road map of how to get there. I'll be on that journey with her and I'm looking forward to it. Well, maybe not all of it. She's planning on adopting a lot of kids and expects me to babysit while she's off being a paleontologist (guess I'll need to learn to spell that if things all work out) or an archeologist. And we'll need to discuss the whole I won't live with her when I'm old because she's putting me in a nursing home and going to Vegas, baby!

Yeah, we're on our way. I just need to get some spring cleaning out of the way, first. Like cleaning out that fear and anxiety closet and dealing with it so I can move forward. I need to learn to not freak out a bit when what I think will happen isn't the reality and to take the bright spots and hold them dear. Things like relishing not having to go back to the geneticist next year...Bird can wait two years before her next visit! And not stressing over her having to have a cardiac recheck every three to five years when I thought she was all clear on that front. Doing a happy dance because the scoliosis is still quite mild and the growth hormone isn't making that worse. Instead of stressing over the pimples she has begun to be plagued with, relishing that maybe this mean she is finally going to start physically maturing. Bird's already a lot more emotionally mature than I am in a lot of ways.

Folks, I am too old for this...

Stilletos, mules, and pumps raining down...

So, things went on. The xray showed a bone age of 10 so we could do the growth hormone injections. There was no problem getting it approved by insurance and we talked to the nurse that was going to come teach us how to do it. Of course, nothing can go off without a hitch, donchaknow. The copay for the growth hormone was $30. When the insurance authorized mail order pharmacy called to set up delivery, they told me the monthly copay was $75. What????? Turns out, there's a little clause in their contract that means they can charge a higher copay for speciality medications. Hmmm, no thank you. Rigamarole to get it changed to another pharmacy and get the lower copay.

Get the shots started. No shots in the abdomen, though. Per Bird, she has a problem with sharp implements near her stomach. Smart kid.

Over the next few months, we dealt with a broken injection pen on a class trip out of state, her dad refusing to take the medication with him when he took her on a weekend visit, my vacation to San Francisco (where it rained the whole time! but Bird got a new red dress) and someone else besides me giving her the shot, homework issues, ADHD medication issues resulting in her going to a psychiatrist for medication management, an all clear from the cardiologist and good results on the blood tests (for growth markers and thyroid levels).

Oh, and then there was the squamous cell skin cancer removed from my arm and multiple visits back to the dermatologist for me. Endo visits every four months. Several visits to the psychiatrist, the geneticist visit who explained it all to Bird in a way she could understand, joining the Turner Syndrome Society, reading and learning as much as possible about the condition, giving shots every night, making sure she takes her Concerta every morning, fighting and struggling with homework completion issues, $500 for new glasses, fighting and struggling to get her tested for learning disabilities. Through it all, I kept the door to that closet that housed my anxiety and fear locked up tight.

And there were silver linings and sunny streets...like the basket of gifts and gift cards some friends gave to Bird and I because we were having a time of it.

Always learning, learning, learning, researching and googling and binging. Girls with Turner Syndrome have a high rate of early ovarian failure, they more often than not have issues with conceiving a child, problems with osteoporosis, diabetes. The learning differences can make things difficult for them. Delayed puberty. I heard of girls who had breast implants because they were grown and had no breasts. Egg harvesting so they could do in vitro when they were older and wanted to have children. Discussions of who you tell and when. What about when they start dating? Girls who have to have their ovaries removed when they are twelve and thirteen because of the presence of some Y chromosome material.

And then the things that had really nothing to do with TS at all...an $80 a month increase in insurance premiums (with a silver lining that I had insurance because if I didn't, Bird wouldn't have the growth hormones that increased her height because they cost over $2,000 a month and the Concerta would cost nearly $300). My mother's increasing dependence on me. The feeling of never being alone, never without something to do.

I worked and ran errands and smiled and joked.

Raining shoes...

For anyone who might be reading (although I doubt there is), I will now expound on a few other issues that arose at about the same time as Bird's diagnosis.

My mother moved in with me the previous October. I love her dearly. However, she has memory issues. She doesn't drive. She is often rigid in her behavior. And what she decided to pay me after she moved in was half of what her living here ended up costing me and way more than that less than she told me she would contribute to the household.

My son had to have his wisdom teeth out.

I was informed that the overtime I'd had for the previous year or so was ending due to budget cuts and there would be no raises.

Yeah, it wasn't the best of times. It was also along about this time that I realized, on a visceral level, that I was all alone in this. I wasn't going to get the level of emotional support I needed. I shoved that into the closet, too, with the fear.

But, there are silver linings and sunny streets if one can just look for them.

As soon as I had the diagnosis and the doctor's appointments, I called the school and spoke to the principal. I explained the situation, that Bird didn't know and she would be told soon. I wanted them to be aware and to be ready for any adverse reactions on her part. I emailed them information on Turner Syndrome. Like me just a couple of months before, they had never really heard of it before. I waited a few days before speaking to Bird about it. I had decided that an offhand, oh by the way, approach might be best. I started by saying that I had some news and this news explained her flat feet, eyesight, the urinary tract infections she used to get, her ADHD, and her scoliosis. I told her what it was and and what it meant and that she was going to have to go see some doctors. She breathed a huge sigh and said, "Oh, good...I thought I was just unlucky and was waiting on the next little thing to go wrong." Her only real question was if she would get cancer and die from this. I told her no...no cancer.

She handled it with far more grace, dignity and acceptance than I. That, my friends, is a silver lining and a sunny street.

And hit me in the head...

I was at work the day I got the news. I sat in my car to call the doctor. I immediately began taking notes, figuring out what I needed to do next. Bird was 13. We needed to have a bone age xray to determine if there was still time for growth hormone to work. An endocrinologist experienced in Turner Syndrome. She needed a cardiac workup to check for coarctation of the aorta and to check for any other potential issues that had been heretofore missed. A geneticist appointment. My mind was reeling.

I hung up from the doctor and the tears burst forth...for about ten seconds. I sucked it up and started making the calls I needed to make. I called the local children's hospital (where I was referred to) and was quoted an appointment in April. I was flabbergasted. I am sitting in my car, in the cold in January and the experts can't see my daughter until April. I called the pediatrician back. Fortunately, she knew of another doctor. I called the office and was able to get her in within just a couple of weeks. I called my ex-husband, Bird's father to fill him in. Bird's stepmother made the comment that it wasn't like she had "real" Turner Syndrome...she didn't have a webbed neck. My ex-husband wasn't able to make it to the first endocrinologist appointment...he had to help his wife take her mother somewhere that day.

I went back into work. I functioned. I made another call from my desk to make the geneticist appointment. I was quoted a date sometime in September. Per orders, I called back the pediatrician and reported it. She took that fight on.

The cardiology appt was easy to schedule.

When all was said and done, I had the appointments ready to go.

Endocrinologist - Jan 20
Geneticist - Jan 29
Cardiologist - Feb 2

There was no time to process, no time to accept, no time to grieve, no time to worry. I couldn't show Bird my anxiety. I was filled with fear for her future but had to shove it into a deep closet, lock and bar the door, and then pile various issues in front of it to keep it from escaping.

I didn't like this journey.

Watch your head...there is a shoe falling

And the shoe dropped...

I took Bird in for her physical and the doctor mentioned (again...as she had for the entire 13 years of Bird's life) that Bird was small for her age. This was something I was well aware of. Bird frequently didn't even make the growth charts. At most, she would zoom up to the 5th percentile. I never thought anything of it since I'm no towering example of womanhood. I'm just 5'3 3/4" (the doctor claims I'm 5'3" but I don't believe him...I know how tall I always was!) So, I kind of started to tune her out. But, then, she got my attention again. She mentioned testing. The short stature combined with lack of puberty was sending up red flags in her mind. I felt like I couldn't breathe for a minute. I asked what tests she wanted to run and what it could be, if anything.

Then, I heard the words that have changed everything.

Turner Syndrome.

Knowing that diagnostic tests are subject to deductible on my insurance, I told her I would have to wait until after the first of the year so my flexible spending account would be filled again. I was tapped out.

As I drove home, I could barely think. I had to hide my anxiety from Bird. I walked calmly into the house, booted up the computer and started doing research. I found out where I had heard of Turner Syndrome before...Law & Order. It was portrayed somewhat as the girls who have it are magnets for pedophiles. Oh, great...just what I wanted to hear.

As I read more about Turner, I could see so much of it reflected in Bird. I was sure. I was positive. And I couldn't cry or rage or get on with what needed to be done.

This was November, right before Thanksgiving. The extended family was all coming to my house for the celebration. I could barely function and felt in a fog. I wanted to talk about it, cry, scream.

The next weeks were filled with researching and asking questions. I joined an online support group to find out more.

I learned...a lot. Some I still don't completely understand. Turner Syndrome is a chromosomal abnormality that occurs in approximately 1 in 2,500 female births. It is only present in females. Simply, girls have XX chromosome and boys have XY. In Turner Syndrome, one of the X chromosomes is missing or damaged. Some girls have Mosaic Turner where only a relatively small percentage of the cells are affected. This is determined, apparently, by when in development that it began. Girls with TS frequently have swollen feet and hands when born (and, yes, I pored over her baby pictures, trying to discern any edema we might have overlooked). Some of the signs are a webbed neck, learning difficulties, vision issues, short stature, delayed puberty, flat feet, scoliosis, cardiac problems, kidney problems, hearing problems. There are others. No girl with TS has all the signs. But, Bird had enough. I was sure.

So, we waited. And, on the first Saturday in January, I took her to the hospital to have the blood drawn for the karyotype test. And, then, I waited. And waited. And waited. karyotype tests take 10-14 days to run. It was the longest two weeks of my life, I think.

Finally, I got the news. She was diagnosed with Mosaic Turner Syndrome. And the journey began...

It's all about me...

Well, not really. But it is. In a way. I guess.

Let me start by telling about my youngest. She is bright, funny, lovely. Let's call her Bird. That's because she eats like one...3-5 times her weight daily. But she is skinny. And she is small. Compact is the way she prefers to be referred to. Environmentally friendly. NEVER petite.

As her life has progressed, I dealt with various issues as they occurred. Urinary tract infections when she was four and five years old? Unusual, yes. Kidney ultrasound showed no problems, though. Then there were the leg pains. They were caused by flat feet. Flat feet, I'm told, don't generally cause problems. They do for Bird, though. There was the immaturity and drawing on herself and her almost obsessive attention to some things (like her hair...no poof!!!). Some things had to be arranged just so but she was so disorganized! And the fears...Santa was a big one. She asked for presents to be left on the porch. She didn't want a big fat man in a red suit coming in when we were all asleep.

Then, we had the fear of death. That was a rough one.

A lot was explained when we discovered she had ADHD. Medication helped immeasurably.

And then there are the glasses (thick glasses and OMG whoever would have thought that glasses for a kid could cost $500 and that is with single vision lenses and no polarization or whatever it is called) and mild scoliosis.

By the time she was 13, I felt like I was always waiting on the other shoe to drop. I just tried to enjoy her as she was, encourage her, love her, help her to deal with everything with a good attitude and a smile on her face.

But shoes, they do drop...

First Post...

So, this is my first blog post and I decided to name it, imaginatively enough, First Post.

Let me introduce myself. I am a single parent of three, one still at home. I work with the data side of databases at a nonprofit. Otherwise, not much else that I'll talk about here.

I had an urge to write. I used to enjoy writing and people seemed to enjoy what I wrote. But, as often happens, I got out of the habit. I'm hoping this gets me back into the habit.

The title of my blog comes from "looking for the silver lining" and "walking on the sunny side of the street". There are those that would think there isn't a lot of silver linings or sunny streets in my life. I have to look for them a lot of the time. But finding them is what allows me to maintain what little sanity and contentment I have left.

I'll be posting from time to time. Don't know what yet. Check back now and again and we'll both find out. :)