Not Quite Right

Well, it's been about a week since I switched to the lower dose of meds, if my daily pill sorter can be trusted. So far, things are... not quite right.

Today, I feel like my skin is crawling, and I kinda want to just rip it off. I keep thinking about taking a shower, as if that might help. I'll probably give it a try, because, while it may be a stretch, it may have a placebo effect. At the gym today, I got dizzy (par for the course) and had to sit down on the gym floor for over 5 minutes (NOT normal) until my head got right. Even then, I felt nauseated and achy and all around WRONG. I felt like the only thing in the world I could do was crawl into bed and sleep it off.

I was really moody the first few days. Poor Hubby had to deal with quite a few temper flare-ups, mostly from my inability to take a joke. It's hard to be carefree and happy when your body feels terrible.

It's difficult to explain, but when your meds aren't right or you're adjusting to a new dose, there's this sort of disconnect between your head and the rest of your body, and things don't feel right in either place. In your head, there's a sensation of being detached from your thoughts, almost as if they're coming from an outside source. I'm not hearing voices or anything that extreme, but I feel like thoughts are handed to me instead of created within my own brain. On top of that, my body feels vaguely like I've got the flu, and my skin feels like it's been glued on top of my body. I feel like I could peel it off.

Emotionally, I'm doing alright. My moods have leveled back out again, although I'm experiencing some increased rates of anxiety (the reason my dose was up so high in the first place), and it can get a little emotional when you feel like your body's just OFF. So I cry a little. No big sobfests, but tears of frustration that I have to feel lousy and there's nothing I can do except wait for my body to adjust to the new levels of medication in my system.

In other news, I've set out on a mission to make some new, local friends. There's a website that's intended to be used as a dating site but has an option to select for just friends, too. I've met some really cool people on there in the past, so I started up a profile again and have started putting out feelers. I actually had plans to meet this really cool chick for drinks this evening, but something came up and she asked to postpone. Maybe she found my blog and realized I'm secretly crazy and got scared away. ;) In any event, I've met a couple of interesting people, mostly local. I'm having to be careful because there are far more guys on there than girls, and the hubby's not too interested in me making new guy friends, so I'm trying to be polite but distant with the men while sorting through the women and looking for those who have shared interests and/or interesting hobbies. I have GOT to get a social life! Our last local friends moved (ironically to the city where my parents live, so at least I'll still be seeing them a few times a year) on Saturday, and we didn't see THEM nearly often enough... I need to befriend someone who has a social circle so I can branch out and have people to see movies with, to go to dinner with, to go see local bands with, and maybe someone who doesn't work in the mornings who would like to get brunch once in a while while C is in school. My social life has been on the back burner for years now, and I think it's contributed a great deal to the troubles I've had. I can't keep waiting for my girlfriends in OK to suddenly decide they want to move to Reno or for us to get magically summoned back by some unforeseen job offer in Norman. We've settled in here; we bought a house here; I'm starting a career here... It's time to make it official and MAKE SOME FRIENDS HERE.

What A Great Day!

Today was one of those rare days when I truly get to sleep in as late as I want. Of course, it didn't quite work out that way, because my phone rang at the much-too-early 10:30 and woke me up. How rude! ;)

I had some work to get done today (in fact, at 9pm, I still have a few minutes' worth left to finish), but that's no big deal. It's mindless work, done at my home computer, while sipping Starbucks and listening to music if I feel like it. I don't mind working a few hours a day, especially when I think about the paycheck I'll be getting at the end of the month! ;)

I left the house three times today. The first trip out was to go sell an amp that I haven't been using, so I started the day out by clearing a large item out of my house and getting a handful of cash in exchange. Nice!

The second outing was a total surprise, out-of-the-blue, last-minute trip for something WONDERFUL: We adopted a kitty! I was trying to look up whether it's legal to own potbelly pigs within city limits here (in furtherance of a drawn-out IM joke with a friend about what to give Hubby for Valentine's Day), and I stumbled across the local animal shelter's website with a listing of adoptable pets. I only checked the cats to see if our missing cats happened to be on there, but instead, I found this beautiful little guy, only a few months older than the kitten. I linked his profile to Hubby, who responded by saying he preferred this other (female) cat. I agreed that she was quite lovely, and he pointed out that there were only 30 minutes until the shelter closed for the day, so I'd better get going! Hubby's not the impulsive type, but I guess he sensed that the house has felt a little bit empty since our two adult cats disappeared... In any event, once I had the go-ahead from him, I immediately packed up C, jumped in the car, and drove to the shelter to meet this lovely cat face-to-face! She was just THE sweetest cat I have ever met, she took to C right away, and she seemed like she'd be a perfect fit for our home.... So I signed the papers!

The only downside to the adoption is that she hasn't been spayed yet, and the shelter won't release an animal until it's been altered, so I called up our vet and made a surgery appointment. They're going to spay her on Tuesday, so the shelter will drop her off to be boarded overnight at the vet Monday night, and, once she's recovered from surgery Tuesday afternoon, I get to bring her home!

Because Hubby picked her out, and because my rule has always been female dogs and male cats only, I let him name her. Lady Gretchen Jameson McFluffington, 3rd Duchess Poofyhuntershire. Yeah, I married a strange one. ;) He actually chose Florence, but I vetoed that in favor of Gretchen. The vet said her name was too long for the file, so they're simply calling her Lady Gretchen and ignoring her title of nobility. That's okay, I think we can forgive them for that!

Lady Gretchen Jameson McFluffington, 3rd Duchess Poofyhuntershire.

The third venture out of the house today was to have a rare, delightful dinner out with Hubby and C. We rarely go out because C tends to get overly vocal at the dinner table, and we don't have a sitter, so when Hubby offers it up, I grab at it with both hands!

The highlight of the day was absolutely adopting Duchess Poofyhuntershire, but that wasn't the only bright moment in my day. I also received the copy of the Extended Protective Order in the mail--documentation that my abuser cannot come near me or C for an entire year (after which point, I suspect he'll be in prison for his pending felony charges). Although it's been official for two days, it was really reassuring to get the paperwork in the mail. I feel like framing it and putting it up on the wall!

Yet ANOTHER positive thing happened today (I know, it seems impossible for this much good to occur in a single day!) when I contacted the Disabiliy Resource Center at my university. As it turns out, my mental health diagnoses qualify me for disability services and accommodations. Things like untimed tests, or taking tests in a room without classmates, things to help ease stress about assignments and exams... All of these are good things that I have struggled all my life without, but am finally self-aware enough to ask for assistance with. Maybe the next time I'm too depressed to go to class for three weeks, I'll get some leeway instead of a D in my dance class! ;) It will be nice to have my disabilities documented and respected for what they are.

OH, and I got the call today that C's custom wheelchair is ready and can be picked up Monday! WOOHOO!!

On that note, I'm going to finish up my work for the night and wrap up this wonderful day with some television in bed. I get to sleep in again tomorrow... Here's hoping the rest of the day is as great as today was!

Inadequate

Some days (most days?), I feel inadequate as a mother. Here I have this amazing little girl who needs so much from me, and I always feel like I'm coming up short. Am I her therapist or her mother? There simply aren't enough hours in the day to work, take care of school stuff, clean the house, cook dinner, and take care of her every need... So sometimes I skip out on one the therapeutic activities I had planned, or I let her play in her room alone too long while I write a paper instead of playing with her, or I can't do much more than feed and diaper her because my head and my emotions are in too much turmoil, and I can't function at a higher level.

C's overall "umbrella" problem is that she has an unbalanced translocation of chromosomes 7 and 8. She has a partial trisomy (extra material) of 8, and she's missing genes on 7 that are crucial in spine and brain development. Because of that tiny little chromosomal mix-up, she has a whole slew of medical problems encompassing every major system in her body, and those have resulted in physical and developmental disabilities. There is no name for this particular genetic anomaly because it's incredibly rare--something like 15 recorded cases in all of recorded medical history, and 4 of them are in my family. I was told by doctors that there was no way I could be carrying the anomaly that my older brother carries, and yet, after C was born, BAM! Reality smacked us in the face. I had defied all odds and brought into the world a little girl whose chromosomes are all out of whack, and we have no idea what to expect from that, medically or developmentally.

In short, it's MY FAULT that my daughter has disabilities. MY chromosomes were the ones that were screwed up and passed on this anomaly. It wasn't just this pregnancy, it was the two pregnancies that miscarried (presumably because they were missing a huge chunk of genetic material), and it's 75% of any pregnancy I could conceivably carry. I didn't choose to carry this or to pass it on, but it's really hard not to feel responsible when it was your body, as a mother, that failed your child. Then there are the added bonuses like C's bilateral colobomas, which happened during fetal development and don't appear to be linked to the chromosomal situation. Just a fluke because, yet again, my body failed her.

Being bipolar is a daily struggle. With the right combination of medications, you can go days or weeks without even remembering your diagnosis, but then a day comes along where you're just disproportionately sad for no reason, or you have a manic episode and spend too much money and can't sleep and talk too fast because your brain won't slow down. Those days, it feels impossible to keep your head above water, much less take care of a completely dependent young child. The PTSD hits even harder, hurling me into flashbacks or keeping me up all night with night terrors, leaving me walking around in a raw emotional state and a complete mental haze. I just pray that my screwed up body didn't pass along the mental illness along with the crummy chromosomes. I wouldn't be able to take knowing that she suffered emotionally in addition to the many other challenges she faces.

Then there's the anxiety. I know I have to be her strongest advocate in healthcare and education, but it's tough to be assertive when calling a doctor's office triggers a mild panic attack and pushing people has never been your forte. When people aren't cooperative in getting my daughter what she needs, I have to fight every instinct in my body and, against my nature, insist that they listen to me and take care of my daughter. I have to hold my breath and pray sometimes that they won't see me shaking, because I have to appear calm and tough when fighting for her. It's really difficult!

She's an awesome kid, and I love her with all my heart. I treasure her every action and sound, and I melt when I watch her sleep and listen to her slow, steady breathing. She is my baby, the love of my life, my world... But sometimes the outside world steps in and makes showing C what she means to me a nearly impossible task. I don't want her growing up with a mother who is sometimes emotionally vacant or distant. I want her to feel loved at all times and to know she can count on me for anything and everything. But can she? I doubt my abilities as a parent, because I made her this way and can't fix her, and because I'm struggling with so much of my own, it's more difficult to be the mom that she needs. Of course, her needs always come first... But sometimes, I just feel I don't have enough to give. Sometimes, I feel like I'm failing... And that's a tough burden to carry.

To Begin in the Middle

I'll save you all the horror of beginning at the beginning. Let's just all agree that there was a beginning, and it was long and difficult, but it got us where we are today, so it was worthwhile. Someday, you'll get that information... Perhaps in bits and pieces, perhaps in recap posts... Whatever seems necessary in order to continue our tale. So! Instead of beginning at the beginning, I'm going to begin... yesterday.

It was Ceili's second trip to Shriners Children's Hospital in Sacramento, CA, but our first trip for the Spina Bifida Clinic. She was seen oh, about two months ago?, in the Scoliosis clinic, where they noted a curvature to her spine, but assured me it was not severe enough to qualify as a scoliosis diagnosis. Now, she was being seen, for the first time in her nearly 4 years of life, for her diagnosis of "Closed" Spina Bifida. Unfamiliar with spina bifida? Look it up; it's interesting stuff. I'm not here to pretend to be a doctor or to bore you with information you may already know, so I'm just going to tell you that Ceili has closed spina bifida, and no one has ever deemed it worthy of medical attention until now, so we really never thought much of it.

I drove three and a half hours to get to Shriners, unsure of what was to come. I mean, like I said, no one ever felt her spina bifida was worth paying attention to before, so I had no idea what to expect from this. Would we get any new information about her current health condition? About what could be? ...Or would it be like every visit to every geneticist, where they probe me for information about her incredibly rare condition so they can gather data, but they have no useful knowledge to impart because it's too rare and no one knows anything about it? I went in with spirits high, hoping for new information. I always appreciate when doctors can tell me something I don't know.

I wasn't prepared for what I got. Of course I wasn't. I know by now that no doctor's visit is ever going to bring GOOD news--the best we can ever hope for is no change or no new information. So why is it that I repeatedly let my guard down when we have a doctor's appointment? Why don't I go in expecting the worst so I can be pleasantly surprised and relieved when the news is no news? At the scoliosis clinic just a mere matter of weeks ago, I was told she did not have scoliosis. The first thing that happened at the spina bifida clinic was an x-ray to confirm that she does, in fact, have scoliosis. Scoliosis which was present and apparent in the films taken a few months ago. The very films that allegedly cleared her of this diagnosis.

....HUH??!? WTF?

Now, I'm no doctor, BUT.... Yeah, that sure looks like a huge curve in her spine to me. Mind you, this was the x-ray to confirm the curve seen in the previous films. So they looked at this spine at a SCOLIOSIS CLINIC and couldn't identify it as scoliosis. No harsh words against Shriners (I *LOVE* them and everything they do, I promise), but someone made a boo-boo that day, and while it may have seemed like a minor mistake because all it did was give me peace of mind for a couple of months, that peace of mind followed by the actual diagnosis was earth-shattering for me. Given my current mental health, it sent me into a state of near-crisis. I began pacing the room, I broke out in a sweat, my voice got louder and higher in pitch against my best efforts to control it, and I nearly had to ask for a glass of water just to be able to calm down long enough to process the news.

The rest of the day was fine. Her scoliosis could be an indication that her spinal cord has retethered, a possibility that has existed and that we've been preparing for since her first surgery at the tender age of 6 months. The quote the doc gave me was that 30-40% of tethered cords that are released re-tether with time. If it comes to it, her pediatric neurosurgeon was a godsend, and I'd be perfectly willing to trust him with my daughter's life a second time. Now, thanks to Shriners and their wonderful team, Ceili will be getting regular urology exams and labwork to ensure that her neurological condition isn't having adverse effects on her bladder or kidneys. We got a prescription for a new, custom-fitted wheelchair for her to use for long distances, long days, and for travel. That should be fun and nifty; we like new things when insurance pays for them!

Meanwhile, in the rest of my world, I have an online exam and a paper that both need to be completed by Monday, then one last final on Dec 7 to end my first full semester of grad school. I continue to exist in a state of heightened anxiety, on the verge of crisis, with my darling husband coming to my emotional rescue every night without fail. I'm fighting the insurance company to get approval for my EMDR treatments for the PTSD, and I'm hoping that fight doesn't prolong my suffering. I desperately want to get better.

Fun fact of the night: For a year, I sang in a rock cover band in casinos and bars throughout northern Nevada, California, and Arizona. I quit to go back to school for Early Childhood Special Education. I'm a woman of varied interests. :)

....P.S. I'm still trying to figure out why it looks in the x-ray like my daughter swallowed a quarter. I'm 90% certain she didn't, but what else could that big circle be?!?