ADVANCING SLOWLY

I have a couple of pieces of good news. First, I took a lateral transfer here at work and will begin my new position in a couple of weeks. While this is just a lateral move, I am hopeful that it will reduce some of the intense stress that I have each and every day. I do not have a “stress” personality, and to be so drained and stressed out each and every day is taking a toll on my health, my family, and my sanity.

The second part is that I just got my official request to apply for the PCE part of my alternative certification. It’s a little known fact to most people that I am working on my second degree and alternative certification to teach here in the great state of Texas. Getting that request in my inbox was proof that what I have been working towards will shortly come to fruition. I am so over working anywhere in the healthcare industry. Even though it’s a HUGE pay cut to go from my position into education, I feel that this is definitely something that I can do and enjoy for the 2nd half of my working life.

Go me!

Epilepsy Update

We had the quarterly visit with the neurologist today. Bottom line is that Kels has once more lost decent control of her seizures. We're at a holding pattern - brain surgery, VNS implant, scores upon scores of drugs (Keppra, Dilantin, Carbotrol, Tegretol, Zonegran, Lamictal, Lyrica, etc.) and nothing has worked for her. This is her life and could very well be her lot for the rest of her life.

At today's visit, she looked at her doc and asked, "Why do I keep losing control?" His answser? Due to the ever changing nature of seizure disorder in some patient, they have no idea. My question was, "Will she ever gain and keep seizure control?" His answer? No idea.

I want so badly for my baby to have a normal life. This is the normal, though. And it sucks.

Blood Pressure and Other Pressing Issues

My employer offers this great, onsite fitness center. It's free, it's open during the work day, and it's convenient. So in my infinite quest for better health (and the quest of being the BEST looking 40 something year old I can be) I went to sign up this morning. I filled out the online questionnaire, scheduled my prerequisite orientation, and then took my handy-dandy health form down to one of the clinics to get a nurse to take my blood pressure and sign my form.

That's when things took a downward spiral. My first pressure reading was 184/117, which nearly caused my friendly nurse to have a stroke of her own. She strongly urged me to go to the ER, however I told her that I didn't want to go to the ER. I have a doctor's appointment scheduled with my own practitioner in a couple weeks. She said that my pressure was stroke level and again strongly urged me to see if I can get in a little sooner. I told her that I had to plan my days off and that I had one scheduled and would be fine until then. So she made me promise to come back in a couple of hours and let her take the reading again.

Fast forward to lunch time. Second reading was 164/107 -- hey, moving in the right direction, right??? But no wash, she insisted on my seeing the doc sooner and to top it off? She didn't sign my form.

What better way to prove I'm unhealthy enough to want to get healthy, right? Yeah, didn't fly. So instead I came home and popped a Lisinopril and will call my doc in the morning. All this for a little exercise.

Tired and Venting

Just to clarify – I have a blessed life. I have overall great kids, a wonderful husband who loves me, a nice house, a good job, etc. I am fortunate that God takes care of all my needs and the needs of my family, most of our wants, and we still have plenty. But…

People who know me in real-life know that I usually am NOT a complainer, whiner, or habitual griper - it’s not normally my nature. That being said, this past year I’ve become extremely unhappy at work, generally disillusioned with the workplace as a whole and with my immediate area in particular. While my home life is great – marriage and hubby are wonderful, as always, my kiddos are sorely testing my patience and fortitude lately – the older two mostly. My father has stressed me out with the whole remarriage thing. The hubby’s family is stressing me out with financial matters that are out of my control but affecting my family. I find myself short on tolerance, short on understanding, and just generally unhappy. I am physically feeling the effects of constant stress – the headaches, the aches and pains, the nausea, etc.

After spewing all that I have to say that I am wondering HOW to get past this point. I’m wondering WHY I’m just now feeling all of that when life has been much more difficult and overall horrible in the past than it is now. Is it hormonal in nature? Am I at that magic age where the mood swings, hot flashes (oh, geez – the hot flashes!!), and the crankiness rule for a while? Am I at a point in my health where things are starting to break down and the aches and pains aren’t just stress – heart problems, WLS related difficulties, etc? WHAT is going on with me physically and mentally?

I would NEVER, EVER trade my family in – I love my husband and my girls. But... But there are days where I longingly think about taking my hubby (who tolerates me right now like a champ) and just running away. Finding a new job (hey – I can be a Wally-world greeter anywhere!), finding a new place to live, a new environment and just being me. Not the mom, not the good employee, not the whole, total, functional mess that I seem to be right now and cannot seem to grow past. I think that Montana might be a cool (literally!) place to live. I’d love to live again in New Orleans (uh, but I have family there – see above stress factors). California is appealing (but those unpredictable earthquakes make me shake). Anywhere but here sounds tempting some days.

So, all two of my faithful readers – do you ever go through this? Thoughts? Suggestions? Reprimands?

SHORT UPDATE

I seem to start every single entry with the words, “It’s been a long time since my last update.” LOL. Lots of normal life going on. Kels has lost control of the seizures again and we are playing with her meds. She had a sleep study done over the Christmas break and we go in on Tuesday for results.

Life with the other kids is going along as normal as it ever gets. Kate is graduating in May and is as hot-and-cold with me as ever. I guess like a normal teenager she likes me at certain times and not at others. Cambo is such a sweet kiddo that I hope her head doesn’t begin to spin around when she hits the teens.

The wonderful hubby is great, as always, loving us all no matter the level of hormonal outbreaks in the house, thank God. Work is work. I am working hard to get out of this career and into another – hopefully by the end of this year.
Short and sweet – but I’ll try to get better about the updating.

Distractions and Directions

Wow! I was on a roll for a little while there. Kels has once again lost seizure control and so we are back in the cycle of playing with medications to see if we can gain it back for a while. She's been having more and more auras and seizures over the last couple of months, but the kicker was last week. She was on campus between classes when she lost her vision. (Quick aside -- were you aware that most community colleges do not have on-campus nurses or infirmaries? Yeah, neither did I.)

I called her neuro to report in with this relatively new aura symptom and he was concerned enough to send us to the ER. After looking her and checking her out, it was decided that this was probably the beginning of a massive wave of seizure activity so they load-dosed her with IV Dilantin, which she immediately had a reaction to. It not only burned her veins, but caused her blood pressure to drop some. After flushing the line and trying twice to give her the IV Dilantin, it was decided to give it to her orally and have us double-up on her regular seizure meds for the day.

Last Friday when her neuro called to say that he would like to keep her current seizure meds (Keppra, Lyrica, and Klonopin) as they are because the dosages are already high, and add Lamictal back to see if it works for her control. Right about this time her brain activity got so overwhelming that she began to lose sleep and then total insomnia while being so very tired she couldn't hold her head up. So her psychiatrist added to the Lunesta a short acting Ambien to see if helped. Last night was her first night taking it and it seems to help some. Between the Klonopin, Lunesta, Ambien, Melatonin and Benadryl, it's a wonder she doesn't just conk out "thinking" about bedtime. Geez -- I'd be a zombie.

In other news...Right after we got the ER last week, I decided that we would out of courtesy let the ex know via text that we were at the ER for preventative reasons per the neuro (even though Kels didn't want him there and she IS 18 and could have prevented it). Instead of seeming concerned, the text we got back was angry-sounding and demanding to know when this happened, why didn't we let him know sooner, and had we planned to tell him at all? Not immediately asking about Kels, but all about the anger and accusation. I am SO very tired of all of this. The girls choose not to be around him and we constantly try to encourage them to talk to him, spend time with him. They just do not like to. He believes (and I know this for fact because he has stated to me and to the girls multiple times) that I prevent them from seeing him. That I trash-talk him in front of them. That I am withholding "his" children from him. This has NEVER been the case, and it is extremely frustrating to be accused of something over and over and over that isn't true. He would much rather believe that I have something to do with his kids not liking to be around him than the fact that it just might be his own attitudes and behavior.

I need to quit before I rant too much longer.

Forgiveness

I have to forgive myself for not being a better parent. I know that parents everywhere have their regrets, and I'm not saying that my regrets are bigger than others. BUT.

As with most families that have a child with special needs, whether mental, physical, or medical, the attention during times of crisis turns mainly to that child, with the understanding that they need you more right then. Over the last ten years, especially when I was a single mother, it seemed as though all my waking attention and concern was focused on Kels. I know that Kate and Cam are great and well-adjusted girls; however, I feel like I let them down in some way. There were days of tears and tantrums when Kate desperately needed her mom to just stop and love, but I couldn't. There were days that Cam took more care of herself than I did, I just couldn't be available because of being on seizure watch and after-seizure care. That regret is something that I'll probably carry all the way to my grave.

There's an amazingly inspirational blogger that I read pretty frequently - Anissa at Free Anissa (link to her blog in my sidebar). Quick background, one of her children was diagnosed with cancer and the family went through treatment. She wrote a post titled "A Letter of Apology to My Kids." While Kels doesn't have cancer, but chronic and severe seizure disorder instead, her words pretty well sum up the way I have felt lots of times over the last 18 years. Take a minute and read, you'll gain a whole new insight into the mind of a mother with a child with special issues.

First Day Blues

Today two of my girls started back to school. Kate as a high school senior, and Cam as a brand-new Jr. High 6th grader. Kels will begin college classes on the 30th. I look at my girls and wonder where the time went. Wasn't it just yesterday that they were infants on my hip?

The hardest one to send off was Cam because she's so much younger than her classmates. She so very much a little girl, naive and sweet and my baby. I really want to keep her that way as long as possible, but I know she's got to grow up and go on.

I am so very proud of my girlies -- the best things I have ever had in my life.

Filing Makes Me Cry

My project for the last week has been to go through about two years of personal papers, filing, shredding, and just generally cleaning up the office area. This evening I was sitting on the floor going through a huge stack when I came across a stack of sympathy cards and the newspaper obituary from mom's passing nearly a year ago. All of a sudden I went from bored filing to sobbing uncontrollably. Hate when that happens.

Filtered

I'd like to apologize to my readers (all three of them). It's been quite a while since my last post, but there have been good reasons I promise! I can't talk about work because, hello! I need the paycheck. I can't talk about school, because that would lead back into talk about work (see above). I am reluctant to talk about the girls because of certain legal action that is in the works. So, how's the weather been in your neck of the woods??