Category Archives: Anxiety/Depression

Sweet Dreams? Not Likely.

IMG_3852Now that Connor has finally decided that being on his stomach isn’t so bad, he’s rolling all over the place. If you set him down on one end of the room, I can guarantee you that he will soon be on the other. I wonder if he thinks to himself, man, if I had just realized how fun this was months ago when I first rolled over? He’s attempting to get into the crawling position, too. He also attempted to climb off our bed the other night. Maybe now, with all his progress, the dreams will stop.

I have these repetitive dreams in which he either starts imitating consonant sounds or starts saying words, and others where he starts to walk. They are, quite possibly, the most realistic dreams I have ever had. Every time I wake up from one, I spend a few moments discerning whether or not it really happened. When I realize it was a dream, I always feel profoundly disappointed and sad. But he’s getting there. He’s progressing every day.

1986 Ford Aerostar (USA) p1

Repetitive dreams both fascinate and annoy me. I’ve always had them, but they seem to change with each phase in my life. The ones I most vividly remember from when I was a kid involve cars, specifically my parents 1986 Ford Aerostar minivan. My parents bought the van upon our return from being stationed in Okinawa, Japan. We were headed to Merced, California, where we would take many drives to Yosemite and all over the west. My dreams at that time had me in the third seat of the van, on the winding mountain roads we so often took trips on, but there was never any driver. It always appeared to be just on the precipice of going over, but it didn’t happen. I was helpless in the back with a distinct sense of having no control.

My other car-related dream consisted of me sitting in a passenger seat of car of uncertain origin. Sometimes it seemed to resemble my mom’s 1966 Mustang, which she drove until 1992, when we moved to Atlanta and my parents bought an Explorer to accompany it’s Ford friend, the Aerostar (that damn van wouldn’t die for a few more years, subjecting me to the  humiliating experience of having a driver’s license but not always being able to convince my parents to give me the Explorer for the evening). It’s 2013, and the Mustang is still in the garage buried under the remnants of my parent’s children, who moved out, but refuse to come back for all their stuff. Anyway, in the dream, I don’t know who was driving, but there was a hole in the floor of the car where my feet should have gone. My stuff would fall through, and I would fight not to fall onto the pavement as it rushed by underneath.1016523_581155591950517_1902471778_n

At some point I went from cars to dinosaurs. I can probably blame Steven Spielberg for that. Dream after dream I was in some random house with other people, mostly my age, but not always, hiding and dodging raptors and–whatever that dinosaur was that nailed Newman in the movie. If I could just get to that elusive front door, I would be okay…

Around the time I went to college I started having the worst dreams ever–the paralysis dreams. I have read somewhere  that these may not be dreams, that it’s actually your brain waking up before your body–but either way, it’s terrifying. I would seem to wake up, but was unable to move or even open my eyes. I’d struggle with all my might to move from my frozen position, but it felt like several minutes before I could. In reality, it was probably just seconds, but it did nothing for my severe claustrophobia. Sometimes it would happen during a nap and I’d finally fly up off the bottom bunk, gasping for breath, roommate fearfully inching away from me.

Then came the teeth dreams that persist to this day. I discover that a tooth is loose, and unable to keep from messing with it, it ends up falling out. It has always been just one tooth until just a few nights ago when I lost three. I’m hoping that just means it’s the end of a dream era.

funny-crazy-creative-toilet-bowl-design-28Then there are the dreams of never ending frustration. One is the entirely standard “I have to take a final, but I never went to class and I don’t even know where to go” dream. Not very much original material there, except that I’m always trying to make my way from  my dorm on University of Georgia’s south campus to my class on north campus. I always seem to be on Sanford Drive, past the stadium and near the journalism building. I also have dreams where I am desperately looking for a bathroom, but no matter what bathroom I find, it’s impossible to use it without being visible to the public. Sometimes that’s because it’s just a huge, unisex room of toilets, and sometimes there’s a huge window facing crowds of people passing by. And finally, there are the dreams where I have to move out of wherever I am living, but can’t make any headway with packing. Things just keep coming up that get in the way.

Notice an unpleasant theme here? They’re all anxiety-based dreams. And I have them even when my waking life is in a state of pharmaceutically induced calmness. No repetitive dreams about Bradley Cooper, or winning a million dollars, or getting back into my size 4 jeans. Nope. Just the ones that leave that icky feeling that last through the first cup of coffee.

So tell me, what do YOU dream about?

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Joy Behar is the New Ignorant (reblog)

Joy Behar is the New Ignorant

By Debbie Costello Smith (original post here)

I was watching The View the other day, largely because Bradley Cooper was on to discuss his role in Silver Linings Playbook. The movie is about a man who has bipolar disorder and has a setback after a traumatic personal event. It just so happens that it is set in Philadelphia, Cooper’s hometown and mine. Cooper went out of his way to assert that the director wanted an “authentic” portrayal of the protagonist, and nothing disparaging was said about the character, just that it was hard to play when trying not to stereotype his challenges. Joy Behar, allegedly an educated woman who is a former teacher, in preparation to asking him a question, said something like “there were a lot of crazies in this movie.” Then, without any apparent catalyst, said: “Bipolar is the new black.” I was astounded and honestly, angry. I told my husband what she said, to which he responded: “Joy Behar is the new ignorant.” I thought it was a perfect retort.

At first, I intended to write to The View, or maybe even write on Ms. Behar’s Facebook or Twitter account (not sure if she has them); however, I decided that the responses would probably only serve to aggravate me further. I honestly don’t trust the attitude of the population at large about views on mental health. I was sure she would take cover in being a comedian. I actually enjoy sarcastic humor. On this occasion; however, it was awkward, uninformed and inappropriate. Whoopi Goldberg tempered the comment by saying that she was black, but not bipolar. As another comedienne, Whoopi might have been being sarcastic, but it came off as a way to offset the inappropriate comment.

Bradley Cooper ignored the remarks and maintained a professional demeanor as he again reiterated the intent of the director to present an accurate picture of the challenges of the disorder. At the time, I hadn’t seen the movie (I have since), so I didn’t have an opinion on the movie. My reaction to Ms. Behar’s comments was visceral. There are actually two parts to her slur: (1) referring to characters as “crazies” and, (2) suggesting that bipolar disorder is the new trend. These opinions are definitely suggestive of the stigma that impedes progress in diagnosis, treatment and self-esteem.

Let’s take the first part….”crazies.” For that moniker to be assigned to characters in a serious movie is ignorant. Let’s say this was a Monty Python movie. Crazy could be a term that would fit some of the characters and their behaviors. They are supposed to be over the top. Crazy referring to people who are struggling with mental illness is unacceptable from anyone, never mind someone who professes to have worthwhile opinions. I am sure that there was a time when people who had medical diseases, like chronic migraines, were called “crazy” because effective diagnosis and treatment weren’t developed. Symptoms were real. Pain was real. Crazy they were not.

The disappointing thing to me was that there was no uproar after the fact. When one of The View members says something that people take offense to, the following day or so, they clarify their intent and often apologize. Not another word was said in ensuing days. I watched the movie this past weekend. I didn’t find the characters to be crazy in any way. Yes, they had some exaggerated responses to things, but that is the nature of bipolar disorder. What was significant to me was that the so-called “normal” people in the movie had quirky behaviors (Robert De Niro was obsessive compulsive and a bookie/gambling addict; Cooper’s psychiatrist was an avid Eagles fan who painted his face half green at games, etc.). This is life. We all have some unusual habits or beliefs. In the case of Cooper’s character, his behavior often crossed into the realm of mania – the point where it was diagnosed an illness and interfered with his life. Cooper’s and Jennifer Lawrence’s characters actually came through at times as the more stable and insightful of the group. They rose above their challenges and accomplished something really significant to them. Crazy is an insulting term that had no place in the discussion.

The second part, “bipolar is the new black,” was so flip and ignorant that I was actually dumbfounded. Where the hell did that come from? Why was that even necessary to say? She obviously doesn’t know from what she speaks. One in four people suffer from a mental illness. Three people in a hundred have bipolar disorder (10 x that number if creative). The cost of disability for mental illness is greater than all cancer and heart diagnoses combined. Statistics indicate, however, that a small portion of people with mental illness ever get care (lack of insurance, stigma, cost of prescriptions, etc., etc.). I spoke with a world-renowned expert on bipolar disorder and asked if he believed that BD was being over diagnosed. He adamantly disagreed with that assessment; in fact, studies show that BD Type II is many times more prevalent than currently thought.

There is more discussion about bipolar disorder, not because it’s trendy, but because people are beginning to talk about it. I’m taking a course on the relationship between mental illness and society and it’s enlightening. One author suggests that reduction of stigma and improved outcomes will only happen when there is a coming together of a community bound by a similar cause. In the case of mental illness, many people are still hesitant to admit that they have a diagnosis in that realm because of the reaction of others…maybe because of the attitude of people like Joy Behar. What’s sad is that she is supposed to be intelligent, educated and informed, at least capable of asking relevant and researched questions. If she were performing in her role as comedienne, one could possibly be more forgiving (although that form of comedy would still be completely tasteless), but she was assigned the role of interviewer.

I’d like to think that she was an isolated case of bias and ignorance. I prefer to think that people are better informed and that they are learning more about bipolar disorder with more empathy toward those who deal with its challenges. Unfortunately, I think her views are more common than I’d like to believe. I wanted to scream at her. I wanted to be a guest on the show and tell them what I’ve learned. Unfortunately, I’ve contacted shows before with no response. I’m not connected in that world. I take some solace in the fact that Bradley Cooper never sunk to her level; that he had the courage to portray a man with acute bipolar symptoms in a very compassionate way; and, that he is now speaking out about the stigma surrounding the disease. We can only hope that people who are connected like him will be able to mobilize that community strength that will educate the public and Joy Behar.

In the meantime, go see Siler Linings Playbook, if for no other reason than to support mainstream cinema willing to address the subject in a winning way. I was never impressed with Cooper when he was chosen as People’s Sexiest Man. I am now impressed with his courage, empathy and tolerance of uniformed and rude interviewers. I am proud that he is a fellow Philadelphian. I’d say Go Eagles! , but I still have to live in Atlanta and I love my adopted Falcons. Even some of the most emotional opinions can be changed.

Here’s hoping for a new view on mental illness and more Bradley Coopers.

Debbie

Tonight I feel angry…

1. I’m not honest enough.

I had a blog once that was painfully blunt. It was my outlet for five years when I battled depression and anxiety. That battle actually went on for more like 10 years. Some friends stuck it out. Others found me too aggravating, and I was aggravating. But they can still go to hell. I’m good now and have been for several years. I was delightfully sarcastic and dark in that blog. Or at least I think I was, in my own little world. I didn’t tell family I had it. It’s long gone since the day a disgruntled employee at Journalspace intentionally sabotaged the server, destroying an entire online community. The one and only time I backed it up was two months prior to that fateful day. I wanted to print it once, but it was over 500 pages. Sometimes it’s hard for me to be completely open in this blog because I use it as a forum to raise awareness for Connor. This means family and family friends read it (although as I discovered tonight, my brother hasn’t been, so he can suck it. I pushed him on a cactus once as children and I’m not afraid to do it again bwa haha). As I get more comfortable, I might open up more on a personal level.

Which brings me to the fascinating world of Facebook. Feel free to unfriend me if my unending lobbying about TSC annoys you. Of course, it’s not like those people would be reading this. I have been blown away by the thoughtful, kind words from people that I haven’t seen in years, didn’t know well even then, and sometimes never even met. Especially when some of the people I spent significant amounts of time with at some point in my life have never cared to say a word to me about Connor.

2. The TSC community needs to go balls to the wall.

I’m not in the greatest mood because the last couple of days I’ve been lobbying like crazy to get votes on behalf of the Australian Tuberous Sclerosis Society. They started out well in the lead. Earlier today another group had a 30 vote lead. Now it’s over 100. I’m about sick of the lack of awareness and touting of various opportunities to get funding for TSC. Once again we are faced with a vote where we aren’t even at 2,000 flipping votes. More like 1,600. Just like the Chase Bank competition a few months ago. Yet I’m part of two online communities, one with over 2,000 TSC people and another with over 5,000. Something isn’t clicking here. I’m angry.

3. Life isn’t fair.

Yesterday, one of the children I know with TSC was rushed to the hospital in the midst of a status seizure. If you don’t know, that is a seizure that won’t stop without medical intervention. From what I hear, it can involve being pumped with so much medication to stop it that they have to be in a hospital because they would otherwise die from an overdose. Connor has never had one, but once again, on the list of increased possibilities with TSC, that is one of them. When I was teaching,I  would, from time to time, have to be trained on a medication that is inserted into the rectum to stop a seizure. I never had a student have a seizure, but I now know that drug is Diastat and that is what it is for. I used to cringe at the idea, never knowing epilepsy would be a factor in my life. Wouldn’t phase me now, though we don’t have any and I’ve never had to use it. Funny thing is that I think that the last 9 months of my life would make me a most fantastic and understanding teacher. Too bad by the time I left, teaching was 10 percent of the job. Garbage paperwork and filibuster meetings were the other 90.

But I feel bitter because this child has been through enough. He’s never been seizure free for a moment. He’s not even four and already lost a kidney. He’s been through enough. Hey, God. Feel free to cut him a break. Feel free to cut a whole lot of babies a break.

Forget TSC. Do you know how many kids out there have a health problem? You don’t. Not unless yours does. Until then, you don’t know. Forget TSC. What about all the other stuff? Once your eyes are open to one, it’s everywhere. Can you believe there is a little girl out there that was not only born with TSC, but is now battling an unrelated childhood cancer? Really? One rare disease wasn’t enough? Did you know cardiac birth defects are as common as 1 in 100? Can you believe that the physical therapist assigned to Connor has a 3-year-old granddaughter battling cancer as we speak?

People are praying everywhere.  But I’ve learned something. Prayer makes the person praying feel better. Don’t get me wrong. I love that people are praying for Connor. He’s had prayers all over the States, Colombia, India and more. Don’t stop. But it gives me this mixed feeling of bitterness and relief. Sure, I want to believe it will make a difference. But I don’t really believe it does. Some prayers get answered. Some don’t. I don’t know that I prefer to believe God is answering some and not others. I’d actually rather believe things are just happening down here. Otherwise, why do some deserve to get answers and others don’t? I’m sick of stupid prayers, too. Do I have the right to call other people’s prayers stupid? Probably not, but if children are sick and/or dying and God is helping you win a stupid ass football game or experience great weather for your fishing trip, I’m gonna be pissed. Is God the reason your wedding went beautifully? No, you got lucky. And if you think God is the reason your centerpieces didn’t wilt and drunk Uncle Jack didn’t embarrass you, you’re a moron. Good luck with the rest of your life thinking God is going to fix all your piddly marriage problems.

I don’t know how people give it all up to God and just believe it is all for a reason. I want there to be something after we die. That’s the only reason I don’t blow it off all together. But while we’re living…what is there? I don’t know.

An early morning with my little rooster.

Yay! It's Christmastime!
Yay! It’s Christmastime!

Last night was a little bit of a bummer for Chris and me. I think it just suddenly hit us with great frustration, the ways that Connor is behind physically. We’re really focused on getting him sitting independently, but he’s definitely not where an 8.5 month old should be. It’s not that we didn’t already know he was behind, but as he gets older and babies can be more active, it’s so much more obvious. I find myself obessing over other babies I see doing more that appear to be smaller in size. Granted, the fact that he’s a chunk doesn’t help, but it used to be if the baby turned out to be older, it didn’t bother me so much. Even if the baby was just a little older, I’d feel okay. But a few days ago we were having breakfast at J. Christopher’s and there was a small, but very active baby girl in a high chair. Even though she was much smaller than Connor, I guessed her to be 9 months. Plus she had older siblings. And she’s a girl! Girls develop faster, right?! I’ve seen kids running, literally, that were smaller than Connor and when I ask, they turn out to be in the 18 month range. When mom replied, “Seven and a half months.” I clenched my teeth and faked a smile. She was supposed to be older than Connor, even if only by a couple weeks.

Whatever these eye rolls are, presumably seizure activity of some sort, I think they are slowing him down. I’m anxious to get our EEG done so we can hopefully adjust meds. Better yet, would be to find out that it’s some sort of harmless electrical activity, but considering they mimic seizures by occurring when he’s very sleepy or right when he wakes up, I don’t know if that will happen. He sped up so much after surgery when the complex partials stopped, but we’ve been on the edge of sitting independently since September. Yes, he’s better, but I thought it would have been mastered long ago.

Why do seizures have to be so annoyingly complicated and present in so many ways? Before all this, when I heard the word seizure I envisioned the classic grand mal (now called tonic clonic) as presented on TV shows and movies. Even if you read descriptions of the different seizure types it can be very confusing because the written description may not match what you’re seeing. I was baffled forever because we were told that his original seizures were complex partials, yet when reading about them online, the physical description was nothing alike. His body would jerk, in a manner more resembling a tonic clonic. But it has more to do with how it works in the brain. A tonic clonic is way more intense, even if it does have similar jerking movements. Some seizures are just staring. Some people have what seem like anxiety attacks, but in fact could possibly be a tyoe of seizure. Take his eye rolling for example. We see the TSC neurologist, and yet he’s never even seen this before.

Argh! I try not to let it get to me. It doesn’t mean he’s not going to do these things. I know he will. Developmental delays are extremely common in TSC, and it doesn’t mean he can’t be a normal kid (albeit perhaps dealing with some TSC issues), but it’s still nerve wracking. I get comfort from interacting on the TS Alliance website with adults who have TSC, and have lived pretty normal lives. That’s not to say they don’t have issues to contend with, but they went to college, have kids, have jobs, etc. Some of them, being born at a time when jack was known about this disease, say their parents were told they would be dead by the time they were 3, 5, or 8. Some parents were told they would be vegetables unable to function at all. And here they are, talking to me on FB. Medicine has come a long way. I don’t think most parents upon diagnosis today get these doomsday diagnoses, because they simply aren’t true. Yes, there are severe cases to be sure, but such predictions can’t be made about a baby. I am thankful that we live in a big city, though, because from time to time I come across people in small towns whose doctors have been practicing since those olden days or can’t work the Internet because they still throw that stuff at them. Oh, your kid will never walk, talk or read. Wrong. There is no shortage of parents who were told that and it wasn’t true. Their kids did all those things.

I’m just really ready to do this video EEG and see what’s going on finally. If the neurologist’s office hadn’t stepped in to help us, I’m certain we wouldn’t have heard by now. I hear it’s quite common for it to take some time. While I understand there’s some coordination that has to take place, and perhaps expecting a same day answer is unreasonable, the fact that I was supposed to receive the accompanying paperwork via e-mail two days ago leads me to believe that patients are waiting longer than they should have to. I was told it would come the night we made the appointment. It didn’t. Out of concern that it didn’t go through I contacted the hospital again to make sure that wasn’t the case. It hadn’t been sent yet, but would be sent that day. Still didn’t come. Day number 3, we shall see… People don’t have EEGs for fun. They are indicative of a problem. They should be scheduled as quickly as humanly possibly. But, hey, what do I know.

But things always seem brighter in the morning, even at 5 am surprisingly. Connor decided to wake up nice and early. Since Chris had to go into work today, I brought Connor into bed with me where his hijinks continued. He was enjoying some early morning shrieks (for fun, not upset) and kicking the mattress. I was half asleep “talking” to him, repeating his sounds back. And if I dared nod off, he’d manage to seize my blanket and yank it off me (Baby danger! Baby danger! Can’t let him suffocate under my blanket! Man, he knows how to play me). At one point I awoke to him yanking my hair. So much for the 10 inches I cut off. We’ve been reading books all morning, aside from the nap that was required for both of us. He’s also getting pretty good at feeding himself his bottle, although he needs help with the second half because the concept of tipping the bottle hasn’t quite taken hold. We started sippy cup training, which is going great (insert sarcasm). He hates the sippy cup so far. We started with a regular one with a hard plastic mouth piece. That was a resounding “oh hell, nah.” Then we got one that’s flexible like a nipple but shaped like a sippy mouth  piece. He did take a few sips before the resounding, “oh hell, nah.”

Progress is progress, right? Perhaps the fact that it’s 4 p.m. and we’re both still in pajamas means I’m not setting the best example for motivation…

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