Monday, June 16, 2014
This week I began working as a virtual assistant, which is cool since I can work from anywhere I have my PC, tablet, or smart phone. I am finding out; however, that being an independent contractor doesn't necessarily make me very independent. No big deal, really, it's just that the reality of it is a little different from what I expected. To be truthful, I really didn't have a lot of set expectations going into this but the structure of it and adherence to time and schedules surprised me just a bit.
I know it's been a while since I've given a seizure update on Kelsey. She had her regular visit with her neurologist last week and there is not one thing currently available or on the near horizon that will help with seizure control. She has near constant auras and pretty regular seizures (average of about 4-6 per week). We upped her Keppra and if that doesn't make any difference the only other option was to add in the new generation of Trileptal. She's taken that before but honestly I can't remember how well it helped with the seizures. So as of right now she is on Lamictal, Lyrica, Keppra, Vimpat, Lexapro, and Klonopin with Diastat as needed for cluster seizures.
We're still trying to get the disability approved. I can't remember if I mentioned (and I'm too lazy to look through the archives) but we actually got to the point where the disability office sent us for secondary outsourced opinions. Yeah. That. Was. Crap. Just to reiterate, she is followed by one of the top national pediatric neurologists at Texas Children's Hospital Bluebird Clinic for Epilepsy. And for her depression (which is strongly related to the seizures) she is followed by a psychiatrist who specializes in adolescents and adults with seizure disorder.
For review of her seizure disorder, they sent us to a nephrologist. A NEPHROLOGIST. Way out of the league of a neurologist. That's a freaking kidney doctor. And he went through the rote questionnaire -- you know, can she lift 25 pounds, can she walk, blah, blah, blah. Well yeah she can IF SHE'S NOT IN PERIODS OF SEIZURE. I couldn't get that through his thick skull (not sure how much was language barrier or just plain ignorance). When she's not having seizures she's perfectly functional. When we're in periods of seizure, the Tod's paralysis messes with her, the drugs she has to take for cluster seizures knock her out for hours, etc. She cannot adhere to a regular schedule when that happens and it happens frequently. Moron. And then? They sent us to a regular therapist (not even a psychologist) for review of the depression. And again the rote questionnaire -- and the declaration that since the depression isn't relevant to the seizures they couldn't consider that as a secondary condition. Geez. Some days the system just gets to me. I see all kinds of people who abuse the system on a daily basis and my kid can't get what she needs because of all the stupid red tape. I know it will all work out in the end but it's highly irritating right now.
And that's all folks. My virtual assistant position is calling my name right now. :)
Posted by LisaE at 1:08 PM
Monday, June 9, 2014
After many, many years of an office job that I could not stand I quit my job in January to get ready to teach full-time. I started substituting to see which grade I liked best and have figured that 3rd to 5th grade would be a good fit for me. I will be doing my student teaching in August and then hopefully will pass my exams and find a good full-time permanent teaching position. I’m still having to finish up a few school related tasks before August, but hopefully I’ll hit all my deadlines and roll into my student teaching as smoothly as possible.
That being said, I’ve pretty much taken the summer off. I realize that I am truly blessed to be able to have this opportunity and am trying to take full advantage of it. I’m calling this my “year of service” and am trying to take better care of my family while finding some time for myself. I do have to bring in just a bit of money, so I’m doing the virtual assistant thing for a couple of companies and it’s been freeing to be able to do the things I need and want while still earning a little bit to round out the family budget.
Hope everyone enjoys their summer!!!
Posted by LisaE at 2:51 PM
Friday, October 18, 2013
Our oldest cat suffers from severe stomatitis. We took him to the humane society this morning for what we thought was going to be an extraction because when I quizzed the clinic staff at the last foster visit they said they perform the extractions. I called again about two weeks ago just to clarify what needed to happen before the surgery. We took up all the food last night and made ALL THE ANIMALS SUFFER FROM HUNGER, which ended up with a kitten stomping all over me this morning in bed insisting on being fed. Anywho, after they examined him they determined that the stomatitis was so bad that they couldn't remove his teeth and we were referred to a "cat dentist" and was told that they take walk-ins.
I called the cat dentist from the humane society to see if we could come on in since it was another 20 minutes away (we live approximately an hour from the human society - same city, total opposite sides). I was told they do NOT take walk-ins and appointment would be necessary. Their first available was next Thursday. We got some kitty antibiotics for Fat Boy and headed home.
Here's a Fat Boy fact -- when we adopted him his name was Teddy Bear but that morphed into Joe Bob, then Fat Boy and sometimes Fat Butt or Theodore.
Interesting note -- on the way TO (that fact is important - see above -- we live an HOUR away from the humane society) Fat Boy pooped in the carrier. And y'all -- it was BAD. Like roll the windows down and stick your head out of the window bad. I told the vet tech to totally throw away the towel that we use to line the carrier. We waited TWO hours to be seen, was essentially sent home (another hour drive) with a cat who was smeared with poo and a carrier painted with it. Yeah. Just. Yeah. I think my nose hairs have been permanently singed because of the nasty.
Posted by LisaE at 3:32 PM
Friday, September 6, 2013
Kels had her routine psychiatrist visit this morning for the depression meds and while there she filled out a depression screening tool (hello? that's why we're there!) that the doc like to have filled out every once in a while. As it turns out, her score compared to the last one back in October was nearly double. After talking to him a while about this, he asked me if she took generic Lexapro. I answered yes, because we take whatever the mail order pharmacy send. Apparently, the generic forms are WAY watered down except for the one manufactured by Mylan. He also said that the Klonopin (clonazepam) she takes is good as a generic only if manufactured by Mylan and the generic Lamictal (lamotrigine) only if manufactured by Teva. This is going to warrant a conversation first with her neuro and then with the pharmacy since this might in some way contribute to our lack of control.
Posted by LisaE at 1:57 PM
Thursday, September 5, 2013
We love, love, love all things Amazon at our house. With the sole exception of my husband, we are a Kindle household. We each have our own Amazon Prime account and shop it frequently. I do think that yesterday; however, was the largest Amazon delivery day in terms of sheer number of items for us to date. We brought home six packages from Amazon. Among those were:
Watch for Hubby
Spark -- What Gets Me Going
New Toy for the Hubby
But the most exciting delivery of all for me is this right here:
Yep, a bread machine. I used to have one back in the day and it was as big as my kitchen counter. Made bread like a champ, but I have very little counter space in our kitchen as it stands and it was just always in the way so we donated it to Goodwill for someone else to enjoy quite a few years ago. This was so a spur-of-the-moment purchase (like the ice cream maker a week ago - more of that in a sec) but I've already planned out the breads for the weekend.
Little aside about the ice cream maker - I am beyond excited about this thing and I don't even eat lots of ice cream. I think I'm on batch number 4 or 5 in a week and the family and neighbors are loving the heck out of it. OMG! I (a self-professed home chef and foodie) am AMAZED that you can throw a bunch of liquidy stuff into a canister, surround it with ice and salt and BOO-YAH! Ice Cream. Just. That. Simple. Who knew?
Anywho -- back to the bread machine. I've pulled out my dusty bread recipes and plan to innundate the neighborhood with fresh bread this weekend. I have a feeling that whenever my neighbors see a new Amazon box sitting out for trash pick-up they either think, "Holy Crap, she bought a what?" or "Holy Crap, food!" I'll be sure and post some bread pics from the weekend, you can bet on that.
Posted by LisaE at 9:34 AM
Wednesday, September 4, 2013
What was touted to us as the most hopeful new drug for Kels back in March has now been taken from our arsenal due to an unusual side effect that so far cannot be explained. It turns people irrevocably blue. Like Smurf-blue. Since they (has anyone ever quite figured out who “they” are?) cannot figure out the why of it, Kels has to come off. No big loss since it didn’t seem to help with her overall seizure control anyway and it is very expensive. So we’re back to the regular meds, which currently includes Keppra, Lamictal, Vimpat, Klonopin, Diastat as needed, Depo-Provera (to help with the hormonal induced seizures), and Lexapro to try to combat the effects of all the drugs, the epilepsy-induced depression, and life as a home-bound 21 year old in general.
But wait! Her neuro says that there is another up and coming, promising drug that should be available soon. I can’t remember the name of it currently, but he’s got great hopes (sounds like a familiar song, doesn’t it?). We’ll see. She’s taking it well, even through the seizures that’ve been happening with the all-too-familiar playing with the medicine. I wish some days that I could blink and take it all away from her, but sometimes our lot in life isn’t fair. Sometimes our struggles aren’t even about us; they are used through us for a higher purpose. Maybe we’ll see a breakthrough in her lifetime in time enough to help her.
Posted by LisaE at 9:23 AM
Tuesday, September 3, 2013
So I’m trying to make a firm decision about when I actually leave my current position to begin my student teaching. I can either begin in January, 2014 or September, 2014. While I’m ready to be gone and begin a new career, I’m a little scared at the same time. I’d be leaving a well-paid, full-time job for the certainty of a three month unpaid student teaching position and then the uncertainty of a job in hand. There are pros and cons to either jumping in in January or waiting until September.
- Sucking it up, buttercup, and getting it done.
- Not being here in my current job
- Greater possibility of finding a teaching contract in March/April
- Not have a regular paycheck
- Few more months salary, which in turn leads to…
- A couple more vacations with the hubs and family (we love our travels)
- A nearly 5 month break from school (both learning and teaching)
- Having to stay at my current job for an extra few months
- Slightly decreased possibility of a teaching contract going into the holidays
I know I don’t talk about it much in print, but there are circumstances currently that make this position much less than desirable and the thought of staying a few extra months is dismaying. But hey!! Vacations!! Money!! And whether I start in January or in September, I’m fortunate that my husband covers my insurance and other benefits so that’s not a particular worry.So, from my vast readership of two – thoughts?
Posted by LisaE at 2:42 PM
Wednesday, August 28, 2013
This past Monday my youngest daughter started high school. Like all new beginnings and firsts, this one made me reflect back on her life. If I close my eyes, I can see her curly blonde hair sticking up every which way. I can see her blue, blue, blue eyes dancing when she laughs wide and big and carefree. I remember her first day of preschool and how nervous and excited she was to be around other kids. I remember her first day of kindergarten, public school, middle school like it just happened a second ago.
She has grown into such a joyful, funny, intelligent and beautiful young woman with a wicked sense of humor (served with a side of sarcasm). She loves God and family and friends and music. Oh, the music. This kid of mine can be in a different part of the house and I can belt out a line from a song of nearly any genre and she’ll join in and sing with me. I have videos of this kid singing in the car on road trips of Black Sabbath, Queen, the Village People, Imagine Dragons, Mercy Me, etc. She’s awesome that way! I love her so, so, so much that my heart hurts. I describe my girls like this: my oldest is that little piece of my heart that walks outside me; my middle is that little piece of my personality that walks outside me; and my youngest is that little piece of my soul that walks outside me.
So when did this
Posted by LisaE at 12:40 PM
Wednesday, July 31, 2013
I initially began this site as a way to document my oldest daughter’s life with epilepsy but as it became more difficult to write about her ongoing struggles with her life, I decided that I would totally change the focus of this place. Her epilepsy doesn’t define her and not me by extension. So then I started thinking about what I wanted to say here. Who am I? I’m a flawed Christian, grateful mom and wife, current student, future educator, disgruntled state employee, middle-aged, young at heart, frequent traveler, foodie, kitten foster mom, wine lover, musician, voracious reader, and I could go on and on and on. So with those descriptives I decided to just write about whatever strikes my fancy on any given day. No specific subjects, no specific prompts, nada. Throw up a picture or two and call it a post? Sure. Tell a story about one of my kids? Probably. Whine and gripe a little about life when it’s hard? Can do. Give thanks to God for the good stuff? Absolutely.
Let’s see where this takes us.
Posted by LisaE at 8:02 AM
Wednesday, March 6, 2013
Kelsey does not have good seizure control right now and at her 6-month visit with the neurologist this past week he decided to try her on Potiga. She’s taking a relatively low dose to begin with so we have some wiggle room but after a week of it, neither she nor I can tell a huge difference in the seizure activity so far. He also wants to transition her to an adult neurologist and at nearly 21 – it’s time. BUT it’s hard to leave a facility and a physician that you’ve been with for so very long and through so much with. I know that we would have to switch eventually, but actually hearing it was difficult.
More difficult, though, was having him tell us that after Potiga, there’s really nothing else at this point that we can do for her. There’s no drug we haven’t tried, no surgery or implant that we don’t already have, and sadly, nothing new on the close horizon. I know I’ve said this before, but as a mom, those words just sweep my feet out from under me. My heart hurts for Kelsey and all she endures, but more importantly my soul sings for her because of how well she does handle it all.
I’ll update more after we’re on the full dose of Potiga.
Posted by LisaE at 4:00 PM