Posted in Health, Kids, School

Where Do I Begin?

I made my counselor cry on Monday. Seriously. Because she saw how much I’m carrying and how self-sufficient I’m being and she feels so badly for me.

I feel like I’ve attained a new level when I can make my counselor cry.

Nitty Gritty Details:

Daughter who was doing partial hospitalization program successfully completed it and also completed four-day-a-week group program and is down to once a week counseling again. Except, she can’t because she just had her 2nd seizure. We meet with neurology in an hour to get more info, but she’s on an anticonvulsant and has a rescue med as well.

I have two kids finishing senior year in 9 days. Whether both can finish all their work on time I’m unsure, but here’s hoping.

Tomorrow I meet with Ethan’s new governmental agency–the autism waiver people–to see what they can offer him now and in the future.

Jim and I met with a disability life planner on Monday to start the social security paperwork process. There’s a LOT between Ethan and Laura.

Yesterday (after the above meeting) I emailed our lawyer to update our wills to add another special needs trust. Everything needs to be redone.

Took the seizure daughter to the pediatrician yesterday and also got a boatload of bloodwork done. SIX VIALS of BLOOD. Yowza.

This morning I returned the majority of the hardware and books for cyber school because of the two graduating seniors.

Tomorrow is Laura’s spring art show and Ethan’s spring concert.  Always on the same day. We will manage it, but will need to drop off the girls in between so one can rest her brain and the other can babysit her.

There’s always other miscellaneous stuff going on, but that’s the major stuff. I just want to get off the merry go round, people. Does it ever stop??!!

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Posted in Health, Kids, Me

Margin, or Lack Thereof

It has Been. A. Week. (insert shaking head)

Monday began like it regularly does, with grocery shopping and one of the girls having counseling. At the end, however, the counselor wants to see me. She’s concerned about where this girl is, and thinks that she needs to change from one on one counseling once a week to group counseling 4x/week for 4-6 weeks. For reasons. I’m, naturally, freaking out not only about the need but also, realistically, about the scheduling and what needs to be done to make it work.

So Wednesday we make our way to the counseling center to fill out forms and for the group counselor to assess my daughter. For “30-45 minutes” after our forms.

One and a half hours later, she says that she doesn’t think group is the right placement, that my daughter should go into a “partial hospitalization placement” for a couple of weeks. This is from 8:30 – 2:40 Monday through Friday about 25 minutes from our house.

Ok. More freaking out, because of the exact same reasons listed above.

I reschedule my upcoming allergy appointment and the boys’ upcoming plastic surgery consults (long story there), but keep my “relaunch your career” class even though it’s stressful to do it, because, darn it, I NEED it. I need something for ME. And I hardly ever do anything for me. I’ll manage the driving from West Chester to Phoenixville to Media. It’s a LOT of driving time, but it’s worth it. Maybe the next two days of my classes when I have to also drive her, I will not go back home in between but will return to Phoenixville instead after class.

I find myself taking very deep breaths and letting them out slowly through my mouth in a blowing motion. No clue why, but if it’s what I need, then ok. I feel on the verge of tears a lot, and REALLY want someone to hold me and say everything is going to be ok. Usually I’m the one doing that to one of the kids.

I don’t do well with a lack of margin in my life. I build it in on purpose because I know myself and I need it. However, hopefully this will only be for two weeks and then we can just worry about group time in the evenings.

Right?

Posted in Health

There Should Be a Rule

That both parents can’t get sick at the same time. Because, boy howdy, does the world fall apart when it happens!

Jim, Ethan and I went to a model train expo last Sunday. Tuesday morning he and I both woke up feeling….not quite right. Enter a VIRUS. No, not just a cold, because this had GI symptoms. And no, not just a GI bug, because this has head cold and exhaustion symptoms. But no fevers. Because then I would suspect the flu. I have had the flu shot, but Jim has not and this has hit us quite equally. Ethan escaped, which leads me to believe we shook someone’s hand or touched a surface that Ethan didn’t.

Thankfully, our kids are teenagers, and older teenagers at that. They are able to not only mostly fend for themselves, but also take care of things that need to be taken care of by mostly Jim and me. So yay for that.

Every day since Tuesday morning I have needed a nap to get through the day. And these are not quick cat naps. These are 1-1.5 hour naps. Of course, that means I’m having more trouble falling asleep at night, but if I didn’t nap, well, I’d just sit on the couch like a zombie anyway.

I’m playing a little catch up today with my desk and laundry. It’s weird, and disheartening, to have lost essentially a week. Nothing but driving a kid to school 6 minutes away (and trying to do a few dishes along the way) got done. Not even showering! When I say we’ve been sick I mean it.

Now, we are definitely on the mend. Being able to play catch up today proves it. But I’m guessing I’ll be napping this afternoon.

Posted in Change, Health, Me

When Did I Become a Drinker?

I grew up in a tee-totalling household. We were Baptists and that was part of it, but my mother’s father was a active alcoholic until his death and that was the larger part of it. I chose, at 21, to try it. My brother cannot drink and be ok, and I didn’t want to end up where he was. But I figured I would be able to tell if I couldn’t handle it. And honestly, that has largely been true.

I chose, on my honeymoon, to actively allow myself to get drunk. I was in DisneyWorld, at a bar that we walked to from our hotel room and I figured it didn’t get more safe than that. I got schnockered on two mixed drinks and HATED it. I couldn’t control my body and felt awful. I thankfully didn’t get a hangover, but that was my one and only time being totally drunk. In the last 20 years or so, I’ve mistaken how much I could have on an empty stomach or how strong a drink was and been a little loopy, but all in all, I’ve been a responsible kind of imbiber.

It helped that I didn’t like it much. Beer? YUCK. Straight liquor? YUCK. Wine? YUCK. Mixed drinks where you can’t taste the alcohol, ok. Then a few years back I discovered moscato and hello! I liked wine! I could have a glass at a social event and fit in! I could go to a winery and actually drink something! I could buy a bottle, keep it in the fridge and enjoy a glass here and there.

And that’s mostly where I’ve been. I really hate the current culture where people joke about how much wine they drink or how hard it is to get through the day until they can get a glass in their hand.

But with all the new research that’s coming out about how there’s really no level of alcohol that is healthy (despite all the crap that the spew about red wine and the heart), I’m finding myself at a place where I think I want to just stop drinking. I read this article today, where the author talks about how she gave up drinking a year ago. It won’t be missed in my side of the family. My sister can’t drink after having chemo. My brother is in recovery and doesn’t drink. My parents still don’t drink. Just my husband and my brother in law do on my side.

So I’m taking a leap of faith and announcing here, officially, that I am no longer a drinker.

Posted in Health, Kids

Neurology Out, Psychiatry In

So, in the good news/bad news front, the EEG and MRI are both done and both show only the expected. Which is:

Periventricular leukomalacia (PVL) is a type of brain injury that affects premature infants. The condition involves the death of small areas of brain tissue around fluid-filled areas called ventricles. The damage creates “holes” in the brain. “Leuko” refers to the brain’s white matter. “Periventricular” refers to the area around the ventricles.

(Quick Back Story: My first pregnancy was quadruplets (please feel free to read back posts for more about that!), which ended in a premature birth at 25 6/7 weeks. Baby A, Connor, passed away about 12 hours later. The other three all had various and sundry issues from the birth, one of which was called Intraventricular Hemorrhage, or a brain bleed. Bennett’s was a Grade II, aka NO BIG DEAL. Laura and Ethan both had a Grade IV, or THE WORST POSSIBLE. The neonatologist said there was a possibility of a “vegetative state”. Which, obviously didn’t happen, thank the Good Lord.)
The MRI only showed the results of that prematuring, and the EEG basically showed the same thing. So, what’s going on with Laura is NOT neurologically based (as far as they know), it’s more psychological.
What that means, at least to me as a parent, is that we need to step it up a notch with the psychiatrist. Our current one, well….he’s ok. We see him because we have to. The practice has hired a woman who is an adolescent psychiatrist (YAY!), but she’s still going through the process of getting approved by insurance companies. Which is no bueno at this point, because that can take up to three months and Laura can’t wait that long.
I have a call into the secretary at the practice to see where she is in that process, and am investigating other options. Unfortunately, our insurance company’s website is not that great when it comes to specific information about doctors–they can give me general psychiatrists, but not specifically adolescent ones. Sigh. I want Laura to be doing better. Talking to the MRI nurse about why we were there (Laura wasn’t in the room) and how the person I knew three years ago is NOT the same kid I see every day now. I want her back, if possible. If it’s not possible, I want her to be getting through this life far better than she is right now.
Posted in Addiction, Family, Health, Kids, Me, Vacation

End of Summer Update

Y’all, I’m sorry. I never mean to disappear over the summer, but it almost always seems to happen.

Looking at a week left until school starts (two seniors, a junior and a sophomore), I’m processing all that has happened over the course of the last 10 weeks. Like the rest of 2018, a lot of it didn’t look like what I had expected. Ethan went to Diller Vacation home, came home and immediately left for a four week program, IDEAL. Laura spent three weeks at Penn State’s Summer Academy. We spent 12 days away from home, 9 of them in Michigan and the others traveling to and from.

That was the expected.

Unexpected, well, that would include a plane ride off the island in Lake Michigan, a transfusion for Catie, a night over in a hotel just the two of us and a plane ride back. (by plane, picture a Cessna, and not a 747!). We still don’t have answers for WHY she is having this bleeding (a period since February except 3 weeks in June). The current course of meds is making it lighter, but has not stopped it. I’m trying to get an appointment at duPont instead of staying at the OB-Gyn’s. While they have been great with me, I’m not thrilled with the level of care with my 15 year old.

Unexpected would also include the death of Ethan’s best friend, the daughter of one of my closest friends. Which, even as I type that, brings tears to my eyes and hurt to my heart. I loved her like a daughter and don’t know how to live life without ever hearing her sweet, soft voice asking for Ethan on the phone. Or to see them, snuggled up on the hammock or a couch, talking and sharing time. If I ever (EVER) tried to picture him actually being romantically involved with someone, it was her. I’m trying to figure out what friendship with her mom will look like when it was our children’s special needs that brought us together. I WILL be her friend. I just don’t want to hurt her.

Unexpected has been my raging-out-of-control addiction. It started before Michigan, so I can’t even blame it on Devon’s death. It certainly helped me avoid grieving, though. And hey, that’s been GREAT. (that facetiousness, people)

Unexpected has been the decision to go forward with another round of SI joint injections on Friday. I’ll be sedated this time around, and have much better expectations of recovery and the pain involved. I flared last time; most likely I’ll flare this time. I have four full days of nothing planned, and then it’s driving the kids back and forth to school. I’ll manage.

Unexpected has been the washer breaking, the hall bath leaking, another spot on the ceiling today that we have NO idea where’s it coming from, and other financial woes. HOWEVER, unexpected has also been a promotion for my husband FINALLY. He’s been working towards this for several years and it’s amazing and wonderful for him to have the recognition that we as his family have thought he deserved. Yay for my husband!

So, yeah. The unexpected has mostly ruled this summer.

Posted in Health, Me

The Change

Those two words deserve to be in capitals. Really. Perimenopause sounds so…unassuming. So not a big deal. The Change, though, sounds much more descriptive, though both are true. I’ve been in perimenopause for maybe two years? Ish? Not sure when it started, although it’s been more than a year. My cycle is still very regular (for me, which equals roughly every 6 weeks). I don’t typically get much in the way of hot flashes, thank goodness. But moodiness? Oh my yes. It’s like I have PMS all the time. And when I actually DO get PMS I’m biting everyone’s head off. And weepiness? It literally just occurred to me yesterday that the weepiness I’ve been dealing with for the past few months might not actually only be about being sad because the kids are getting older and doing so many milestones.

I was reading a book–a novel!–and read a paragraph that was sad.  And found real tears in my eyes. And though to google “perimenopause and weepiness” and BOOM. Hello other people going through it! I haven’t been like this since I was pregnant, which was a long, long time ago. I’m not a cryer by nature, except for videos of soldiers coming home and adult children telling their families they are pregnant. But lately commercials, TV shows, watching my kids…you name it and I’m in tears. Which believe me, makes me feel stupid. Which yeah, I know I need to get over.

I’m just grateful I can put a name to this moodiness and that at some point it will actually be done once I’m in menopause. Right? Or does this actually continue? Readers who have gone through it please comment!