Notes from ShellyCentral

My mom has a Leukemia.

 

My mom has Leukemia.

If you look at my Facebook you already know this, but it’s just weird and I feel like I can’t go on and act like other things are important or make posts about anything else until I say that. I keep trying but it’s just this big thing on my mind at almost all times. She has Chronic Lymphocytic Leukemia (CLL). They’ll be treating it with an oral chemo drug. And I’m going to try to not talk about it very much. Not because it’s  not important to me - it feels like the most important thing right now - but because I don’t want this to become everything about life. Neither does the rest of my family. My mom is a complex person. Her life is full of so many things. This is just one. I don’t want it to become who she is. But it is a part, and this challenge will become part of who our family is, really. So I just wanted to address it.

Anyway, just so we all understand that whatever I talk about next, that’s what’s on my mind (at least a little).

 

 

chocolate is a necessary part of life

there are a lot of ways i can tell it’s time to change my nuvaring. one is that i keep remembering random mistakes i’ve made over the last 43 years or so (my memory is kinda sketchy any further back than that). another is that my google calendar sends me a text. but the most reliable thing is that i need chocolate. really. truly. need. to. eat. some. chocolate.

a lot of times this happens and there is no chocolate anywhere in my house. lucky for me this isn’t one of those times.

on my last night at disney world, i realized we had 5 snack credits left on our meal plan. you probably don’t know what that means, but basically it means that i had paid for 5 “snacks” and if i didn’t buy them by midnight i was letting disney have more of my money for nothing.

i love disney, but come on now.

so that night i was in a desperate search for some snacks i could find nearby that i could bring home or give to brian and adriane (technically they were their credits too, but they were both already passed out at our hotel).

the ladies at the starbucks in epcot were incredibly helpful, and one thing i came home with was this.

and as i was sitting here wondering what chocolate i might be able to find in my house, i remembered it.

oh man it’s good.

thanks disney world, and nice starbucks ladies. and brian and adriane who were asleep so i could make the choices.

 

today has been a better day than yesterday.
first of all it was warmer, and that counts for a lot.

i took daisy to the vet this morning so they could xray her knee. about a month before i left, she did some kind of thing that almost pulled a muscle in her knee. it didn’t seem really bad, but eventually i took her to the vet who gave her some pain pills and told me to not let her run or jump or play or have any fun at all. the key was to give it time to heal.

and then i came back and although it’s not at all worse, it’s not really better either. so i called this morning and made an appointment for an xray. 187 dollars later, the vet didn’t see anything but sent the image to the radiologist to see what they can see. i’ll call tomorrow and find out what the verdict is. mostly i’m just relieved i probably haven’t ruined her life by going on vacation when she was injured.

but 187 dollars. dang. that dog is expensive. she’s hasn’t cost me anything close to what my brother’s money pit dog has cost him, but she’s definitely cost more than all the other dogs i’ve had combined. good things she’s so very worth it. i love that girl so, so much.

 

after we got home from that, i drug hannah out of bed and to the grocery store with me. i really missed food from a home kitchen. i want to call it real food, but a lot of the disney food we ate was both real and good. i even had some fresh fruits and veg. i think you know what i mean though, even though i can’t think of how to best describe it.

we also stopped by michaels so i could buy an album to make a project life style scrapbook of our disney trip. it won’t be as awesome as my 2010 disney book, but it will still be fantastic, and oh so much easier. hannah bought a copic maker. she’s a big spender.

after that i was so incredibly sleepy i had to crash out. i tried to watch some doctor who but i think i fell asleep about 3 minutes in. after i woke up it was dinner and feed the dogs and look for the photo pass pictures and here i am.

about to go to bed again.
well not quite, but i am thinking about it.

i still wish i were still at disney world, but i’m not feeling anywhere near as sad as yesterday. i imagine after i change my ring tomorrow and fianlly get all the bags unpacked and things put away i’ll be feeling even better.

i’m definitely looking forward to that.

 

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My Disney 2010 Memory Book : Part 2

recent life according to my phone pix

Trying to sum up the crazy that = my life right now is way too big of a task. So I decided to let my phone tell the story, with pictures from the past couple weeks.

The 15th was Hannah's birthday. We did several things to celebrate. One was buying her this totally cool Doctor Who belt that is made with an old car safety belt buckle.

We also stopped in the Disney store. When the worker lady heard me mention her birthday, she made H this button. (It says Elizabeth because that's what the girl goes by now with everyone but her family)

One day I was feeling a bit overwhemled with home repairs, they money they involve, my crazy dogs and many other things. I remembered this quote I love and decided to write it up in my journal. I love it because it can be so true - but at the same time, compared to the problems of Camille Claudel and so many other people, it helps me not take it all to seriously.

In the middle of that week, my best cousin Angie and her son Tyler came to Lawrence to visit me. I had a super good time all day long. When baby niece #1 saw this picture, she said "That's Shelly with her friends."

Angie and Spike made a sort of uneasy alliance. Angie got brave and decided to hold him to get their picture together.

Friday of that week was Alan's birthday, and he wanted to go to this old car place and look at a lot of shiny old cars.

After that we had dinner. Since people are complaining lately about how they don't want to see pictures of people's dinner all over the internet, I thought I'd share a picture of what used to be my dinner. Actually I just didn't think to take a picture until it was all gone. It was delish.

To cap off the exciting birthday adventures, we checked out used books. I was surprised to find a second edition copy of the Rick Steve's travel book that has since helped me and countless others tackle a trek through Europe. It's changed a lot over the years. I didn't want to have it, so I just took a picture of it.

And then it snowed. At the time it seemed crazy that it was snowing on April 23rd, but now that's it's snowing right now on May 2nd it doesn't seem quite as remarkable.

 The next day it was warm and sunny again. Both my dogs were on watch.

A couple days later Hannah had that bad seizure. The dogs watched over her the next day while she rested.

That weekend we were watching the latest episode of Doctor Who. Watching the credits, I thought "Oh, huh. That Mat spells his name like my friend Mat King.... Wait a minute!" Weird. I'm pretty sure it wasn't my Mat King because he gives me a hard time about loving the Doctor. But you never really know, do you?

 

 

The day I almost had a heart attack.

It was Thursday morning. Around 8am I got a phone call from Hannah.

She was out of breath and I could barely understand her.  After I interrupted to make sure she wasn't having a seizure or too low, she slowed down and I got a better idea of what was going on. She had left her phone on the bus and was barely able to chase it down to get it to stop so she could get her phone back. She was super upset that she might have lost her phone forever (not that big a deal really), and she was in pain from panting in that frigid cold air. The wind chill was just under 0 that morning and she felt like her lungs were bleeding she said.

She mentioned getting some coffee and I told her I thought that would be a great idea. I told her to take the lid off and breath in the steam until she felt better. I thought about telling her to take a pill she takes sometimes to stave off seizures, but I only barely thought of it so I didn't say anything. This is foreshadowing. We hung up so she could get off to her class and I could get back to my business.

Not long after that, I got another call from her, but when I answered I got nothing. Just rustling. I was a little worried. Was something wrong or did she pocket dial me?  I stayed on the phone to try to make out anything in the background, but I could hear nothing. I kept shouting her name hoping she'd hear me. Eventually there she was. Nevermind she said. She had it under control. She had to get to class.

Turns out she hung up because the EMTs were there checking her out. Of course the stress (physical and emotional) had caused her to have some little seizures. She jerked and spilled her coffee all over her coat and her hair. She jerked some more and so she sat down in a nearby chair. More jerking and dropping her coffee on the ground. She was approached by a campus security guard.

He asked if there was a problem and she explained to him that she was epileptic and having some jerks, but she'd be ok. She just needed to get a pill from her bag. She was trying to convince him she was fine, but he wasn't buying it. Apparently he called EMS. Later, still in a kind of post seizure stupor, she told me "I guess that was the siren I heard..." It was the fire department. The checked her vital signs, checked her blood sugar.  She told them she needed her pill and they dug around in her bag for it. She told them it was in an altoid tin. First they pulled out her gum. Not it, she said. They found the right tin, but tried to give her a naproxen. "That's naproxen." she said. Finally the found it and gave it to her. But they were worried. Her blood sugar was high (she had just eaten and was drinking a cafe mocha). They wanted her to go to the hospital. They kept trying to convince her. "It's just down the road," they told her. But she kept refusing. "I've been doing this since 6th grade." she told them. Eventually she stopped jerking and they had her sign a paper refusing the hospital after they warned her the results could be death. She asked for some kind of proof they had worked on her so she wouldn't get in trouble for being late to class and they gave her a copy of one of the papers.

So she went to class. She had the teacher last semester so they already knew each other pretty well. Remember when H had to do emergency firstaidon the guy who cut off his thumb? It was in her class. So she was super sweet to Hannah and offered to let H go rest in her office. H decided just to sit in the back and work on some sketches, right after she called me to let me know what was up.

Hannah said she was annoyed that the security guy had noticed her, and especially annoyed that he had called EMS, but personally I was so relieved. It was great to know that if anything happened to her on campus she would be taken care of. Beyond relieved. So grateful. We hung up and I went back to my business.

For a couple minutes. Then I got a text.

I'm still shakey. I almost want to come home.

Do it. I texted back.
Do you want me to come get you?

Omg yes please.

So I threw on some clothes, separated the dogs and headed out. I realized I had the bad car and would have to go to Danny's office and trade for the better car, so I texted her that and that I'd be there in less than an hour. When I got to the car I realized a tire was super low on air, so instead of heading to the highway, I drove to the gas station to get some air. Thing is I didn't have an air pressure gague and I did not have time to find mine or buy a new one The one on the air machine was too cold to work. I mean it was seriously cold. I thought my hand was so frozen it was going to break off while I aired up the tire, but I held the nozzle in place and just tried to guess at the pressure by how it looked.

Ok so finally I was off to get Hannah. I was still worried she might have more seizure activity, and especially worried about her having a grand mal seizure in class. I tried to call Danny so I could tell him I had traded cars and ask him to text H to let her know I was a running a little late. The call failed. I tried again and it failed again. I looked at the phone and noticed that horrible little circle with a line through it indicating I had no signal. What? I turned off my phone and turned it back on again. Still no signal. What the what? So I turned around and headed back to Danny's office. I needed a phone, to let her know I was late and let her know when I got there. And where I was waiting since we didn't have a set pick up spot.

I rushed into Danny's office.

"It's kind of an emergency," I said. "Hannah's ok I think, but I need your phone."

He handed it over. My text to Hannah failed. I tried to call her - failed. He couldn't text or call anyone either. I tried the land line in his office and got the three annoying tones followed by the lady saying all circuts were busy. How could all circuts be busy? Was there a national emergency happening in addition to my personal one or what? We were trying different things, but I was also a little panicked because she was expecting me about 20 minutes from that point and I didn't have a way to let her know I was late. I was afraid if she got more stressed, it might cause more seizurey stuff. And I was worried that if she had a grand mal seizure and they took her to the hospital there would be no way for them to let me know.

I tried my mom, but just got a busy signal. At that point we started to think it was AT&T not working. We used Danny's land line to call our friend Leonard's land line. Danny asked him to keep trying to call Hannah to let her know we were on our way and our phones weren't working and we headed out.

Danny had decided he wanted to come along which was more than fine by me. While he stopped by the bathroom, I used his email to send a mail to Hannah hoping she'd think to check that if she figured out the phones were all down.

While we were in the car, Danny realized he could still use the data network to send Google Talk messages. Unfortunately, Hannah had that option off, but he was able to communicate with Leonard who let us know AT&T was down over several states. Perfect timing AT&T. Really really perfect.

So I'm zooming into KC and we're wondering how on earth we're going to find her once we get there. It's like the olden days before we had cell phones, or I guess like what would happen in some crazy all the phones are out kind of end times disaster. I realized I have a handful of friends who take classes on the same campus so I had Danny post on my Facebook to see if anyone was there at the moment. No one was, but several friends offered to drive there to help me if I needed it. Thank you friends, that was incredibly sweet.

Eventually we made it there, about 45 minutes late. I tried one spot where I've picked her up and dropped her off before. Danny stayed in the car and I rushed in and ran around looking for her. No luck. So we went to the next spot. Again, no girl. I asked a student working the theatre's ticket office if she could tell me where the metal smithing classroom is, and luckily she could. I decided to also ask if there's any way they can get ahold of that classroom. I tell them my story and that the phones are down. They can't, but they send me to campus security to see if they can help.

The very nice security officer (with a really big gun in his belt) remembered the report about her seizure that came through earlier and led me to a lady that I think was about to help me in some way when I got a google talk message from Danny. He had found her! She was wandering around the building, kind of dazed and trying to find a signal since no one around her had realized AT&T was down. Such. Relief! He was going to get the car, but Hannah was waiting for me by the front door.

Oh you guys, there have been very few times I was more happy to see her than at that moment. She may be almost 20 but at that moment she was just my baby. I think I'll remember turning the corner as she came in to view forever. Her white parka was covered with coffee. Her hood was up and her face was half covered with the fur of her hood and the mess of hair she had also spilled coffee all over.  She was pale and she looked confused. I hugged her close before asking if she was ok.

"I feel weird," she said.

I helped her out to the car and she laid down in the back. Danny and I told her the story from our point of view and she filled us in on the details from her end as we drove home. Our phones came online just as we got back in town. Perfect timing AT&T. Down just during the 3 hours we were having a crisis.

So, all's well that ends well, right. But dang! How crazy was that morning? 

Today Hannah's mostly back to normal. She was hungry and tired, and coughing a lot yesterday, but otherwise normal. It sucks to have a kid with health issues, even when that kid is mostly grown. 

Morning Rambling

I slept all the way till 7 this morning. It's like a magic miracle. I enjoyed it. Now I am up early and tidying the tiniest bit. I am also even less caring about Tiger Woods and his billionaire life than I was when he first smashed into a tree. And that was very very little. Why do we care so much about famous people's lives? I mean I know it's human nauture, and we always have and it's some sort of escapism, but I just don't really get it. On the other hand, there's Casey Johnson, who I talk about at least once a week. She was rich and famous, although I didn't even know she existed until she died (although apparently she hung out with those ridiculous clowns onthat Flithy Rich: Cattle Drive show I  was fascinated with). She died from diabetic I slept all the way till 7 this morning. It's like a magic miracle. I enjoyed it. Now I am up early and tidying the tiniest bit. I am also even less caring about Tiger Woods and his billionaire life than I was when he first smashed into a tree. And that was very very little. Why do we care so much about famous people's lives? I mean I know it's human nauture, and we always have and it's some sort of escapism, but I just don't really get it. On the other hand, there's Casey Johnson, Johnson & Johnson's heiress, who I talk about at least once a week. I didn't even know she existed until she died (although apparently she hung out with those ridiculous clowns onthat Flithy Rich: Cattle Drive show I  was fascinated with). She died from diabetic ketoacidosis which is just so ridiculous. Do you know how easy it is to not die of that? You take insulin and there you go. Now I know i don't have diabetes so i don't really know how it is. And it's easy to be all preachy when you're the mom and not the diabetic. But basically she's dead because she didn't push the buttons. I'm sure she had an insulin punmp and I'm sure in less than one minute's total time a day, she could have not died and kept living. If you can just keep living, you never know What might happen. So push the buttons. Of course this hits super close to home because my daughter has diabetes that she does not take care of properly about half the time. I'm so afraid something like that is going to happen to her, and there's really nothing I can do about it. It makes me crazy. I just want to jump in and do it for her, but I can't anymore. So I just do things like ground her when she has a seizure that happens clearly because she didn't take care of herself the slightest bit, and then everyone thinks "Oh my god Hannah's mom is so mean. How can you ground someone for having a horrible health emergency!" But I'm not really grounding her because of the seizure, I'm grounding her because she's just given me concrete proof that she will not do the tiniest things to take care of herself and make sure she keeps living. Ugh. On behalf of diabetic moms everywehre, just push the buttons! check your blood! we just want you to live with all your limbs intact and not blinded or with rotten kidneys and stuff. I know it's hard to take that stuff seriously when you're a teen ager. I got pregnant when I was a teenager because I was sure all that stuff would never happen to me. But natural consquences of the physical world don't care about you, they just happen. Man I'm kinda rambly ranting. I had no idea I was going to talk about diabetes.

I came here to talk about another Hannah thing, but I didn't want it to be at the top because it's kind of drama about Hannah and I've always tried to keep her stuff and her life out of my public life as much as possible. I mean I tell stuff like 'H did this..', and I certainly complain about her diabetes enough (see above), but I don't usually tell her personal life stories, if you know what I mean. But I'm about to right now. So, Hannah has this very serious boyfriend I will call F, because that's the letter his name starts with. He's swell and they are all in love. But he has this little girlie fan group who are getting a little mean. At this point they've involved some friends of their's that Hannah doesn't know but is scared of. She was out of one of her classes yesterday working on another project, and some of the girls were asking where she was because, in 90s speak, they wanted to step to her. What did they want to say? Oh, Hannah, we're going to kick your ass because you did something that somehow made a boy like you and I want him to like me?" That's so immature. But then I have to remember, they're like 15-18 in High School so yeah, they're immature. F called the 'ringleader' of the fangirls and told them to cut it out. This morning they're going to talk to the security officer or whatever, because I guess there were some direct threats of ass kicking. !! What? The girl already has a hard time paying attention to her schoolwork. Leave her alone!! And do not even ever think about hurting my baby monkey because I can be mean and nothing brings out mean like being forced to protect one' offspring!

Now since I'm rambling, let me say this is something so foreign to me I could never understand. I spent 8-12 grade at a college prep charter school. You only went there if you wanted to, and it was something like an honor or a treat or whatnot to be able to go there. That's what they kept telling us anyway. So we had lots of rules. LOTS of rules that were strictly enforced in those first few years. And if they weren't followed there was no detention, no suspension, no punishments of any king, you were simply sent back to your old school. Where all the kids hated you for traitoring it up and going to Sumner in the first place, and worst of all (to a bunch of geeky kids who wanted a college prep education) you wouldn't learn as much. That seemed like such a punishment back then. "What, you mean I won't be able to get into KU?" Whatever. It made for a great learning environment though and there were never ever any fights.

Hannah says fights happen in the hallways of her school all the time. !! It's not that I don't believe it. I know the world is a violent place and teens have little impulse control. But I just kept thinking 'Oh, they're not going to really fight are they? Really? A fight? At school? Well what if you're late to your next class? What if you get caught and have to go to the Principal's office.' Doesn't anybody have anything better to do than fight? I'm sad that school's not like that for her and not a safer place to send her every day. Dang, I'm sorry the world's not a safer place to send her every day but that's another entry. I wish she were going to school and focusing on the learning, and I think that has to be so hard in a regular public school. I don't know if I could have done it. I always got so caught up in any drama. Life was all about the drama. Anyway, I don't think I explained that very well, but I'm worrying about it today. I do really think it's much ado about nothing, but that's my general attitude in parenting, and sometimes it backfires on me. Like when her foot was broken and I was all 'you're fine'. Or when she was first diabetic and I was all 'Come off it Hannah. Nobody's tummy hurts that much." I'll be glad when it's pick up time.

So that's on my mind, but I also have plenty of other stuff to get done today. I'm way behind because my sinuses have been trying to kill me from the inside and making my entire head a ball of pain. Stupid sinuses. Today I do feel a little better, at least so far, so I'm going to try to catch up a little bit, or at least top the lag behind. It's Friday already and it still feels like Wednesday to me.

Yesterday's Long Story and Lots of Pictures

Yesterday started out with some excitement. Not the fun kind of excitement though. I was asleep when Danny came downstairs to tell me he needed help. Well, I've been mom to a girl with diabetes and epilepsy long enough to know that's never good.

"Help with what?" I asked.

"With Hannah."

"I know that, but what's wrong with her?"

"She fell down."

At that point I was frustrated as well as worried. I could guess all that, I wanted to know what was wrong with her - what caused the falling down. Was she still seizing? Did she hurt herself when she fell? So I stopped asking questions and rushed upstairs. I grabbed boxes of juice from the kitchen in case she was low and headed up the the hallway outside her bathroom. That's where she always falls. Out of the last half dozen seizures at least, they've all happened in or just outside her bathroom.

No one could find her blood sugar meter and although she was conscious her brain was not at all working, so she wasn't any help. And she didn't want to drink the juice. I kept telling her she had to drink it and she kept sitting it on the floor and crying "I'm trying". I made her drink it but actually, it really didn't make that much difference. If it was an epileptic seizure, her blood sugar had nothing to do with it. If it was diabetic, by that point her liver would have released all it's sugar and she'd be fine for a little while. But it's just one of the few things I can have any control over to try to help, so it makes me feel less helpless. And it certainly doesn't hurt.

Eventually we found the meter, and she was high which really told us nothing except that she wasn't in danger. The next check a few minutes later had dropped a bunch. I helped her down to the couch, got her some things she needed and sat with her till she fell asleep.

A few hours later she came to me begging to go to school. She swore it wasn't because she wanted to see her boyfriend, but I had my doubts. Still, she seemed ok, so I discussed with Danny and took her to school. And worried.

It was grocery store day, so I headed for the store in town that participated in the  Give Back program, and on the way realized how hungry I was when I drove past my favorite Lawrence restaurant, Jade mongolian grill. I decided I deserved to have some lunch there.

They decorate with reproductions of the statues they found in the the massive and amazing tomb of the first emperor of China. This little horse is in the entry way. I like him. (He makes me think of Mulan, but don't tell anybody)

This was my appetizer - egg drop soup, some noodle, green beans and mushrooms. I didn't take a picture of my tasty stir fry. And yes I know I'm eating out way too much lately.

I realized while I was bringing the groceries in that most of the horrible snow had melted, and I could actually see a bunch of muddy ground. That was good and deserving of being recorded in pictures.

Eventually it was time to fetch the girl from school. Her feet were hurting a lot and I didn't think she was going to make it into the house. We were trying to decide whether or not to go to the ER (we all hate the ER ordeal) and decided to wait a little bit till Danny was home to make a decision. H was on the way to do something in the kitchen when she gave up and laid down on the floor. At this point I was pretty sure a trip was going to be the best choice. No one wants to go, but even worse would be to send my kid off walking around on a fractured foot.

Danny got home and it didn't take much discussion to realize she should get checked out, so I brought the well used crutches out of the garage and helped the girl get out to the car and the two of them took off for the hospital. Soon I got a text that it was pretty empty and they were about to head to radiology which was very good, and not too long after that they called to say they didn't see any fractures - what a relief! The daytime guys would double check the films and call us if they saw anything, but we just needed to make a follow up with the primary doc, keep her feet iced, and give her drugs when she wasn't at school.

All's well that ends well, right?

While I was at home waiting and trying not to stress, I worked on my little book for this winter.

And that was my long day with lots of pictures.

Today hasn't been nearly as eventful. It's noon and I haven't even left my house. My brother just called though, so I'm about to call him back. We are going to talk about our end of the year trip to Disney World. Man I hope Hannah can handle that without any medical emergencies. So far we've only had one big vacation since she's had health issues, and she did manage to have a seizure and fall and need medical attention during that. Because she snuck out to go to the beach really early while everyone else was still asleep. !! I'll worry about that later though. I'm ready to think about some happy things. Like Disney World.