Blogging for TSC Awareness Month

When Connor was first diagnosed with TSC, it felt like my life very quickly split into two parts: BTSC and ATSC. Before TSC and After TSC. Although the extreme emotions surrounding that feeling have faded, I still find that when I think about stuff I did in the past, I calculate how long until he would be born when I did it. Moving into the dorm with Gio-13.5 years until Connor will be born. Teaching English in Korea-less than nine years. Taking language classes in Spain-eight years. Starting to teach elementary school-less than seven. Closing down our favorite bar every weekend with Lili-less than five. Meeting Chris-three and a half. Traveling to Italy-11 months. It feels so foreign to think I was just walking around at one time, thinking something like this could never happen to me or someone I knew.

Now I wonder who the people are walking around, like I did, never even hearing of this disease, not knowing that it will enter their lives someday. There are other versions of me that are getting ready to take final exams at college, lying on a beach, starting a new job, looking for their first apartment, at the mall, house hunting, planning a big summer backyard bash, training for a 5k, and just going about their lives, with no idea that one day a doctor will say the words tuberous sclerosis complex to them.

I have a number of guest bloggers that will be sharing their personal TSC stories over the next month. Some have family members with TSC. Some have TSC themselves. Some have both situations. I hope sharing their  unique stories will help spread awareness and help us find a cure someday.

Photo courtesy Catrina Simmons Jones https://www.facebook.com/LouisianaTuberousSclerosisPage?fref=ts
Photo courtesy Catrina Simmons Jones
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Whatever happened to quality?

You know what I’m getting really sick of? Every time I buy something with a moving part, or that plugs in, or takes battery, I get hit up at the register to buy a warranty. You want me to buy a warranty on a battery-operated toy? This is a consumer trend that has gotten out of control, and it leaves the manufacturers with no responsibility to provide a quality product, because Hey! You didn’t buy the warranty! Sorry. Can’t help you.

When did it become the norm that we have to spend more money to hold anyone responsible for the quality of their products? I’m sick of standing at registers having to make a spilt second decision that leaves me feeling screwed over no matter what I choose. Look, some things I get. Cars, computers…extremely complicated products with tons of moving parts in which something can go wrong. That being said, I think that if something goes wrong that is clearly a manufacturer issue within the first couple years, I don’t think you should need an expensive warranty to get that fixed. But a vibrating infant chair? I should not feel pressured to buy a stupid warranty.

And clothes. Oh, how I’m sick of the low-quality that has become the norm with clothes. I’ve lost count of the pairs of pants in which the hem has fallen out in the first couple wears. Express and NY&Co, I’m talking to you. I’ve given you an extensive portion of my income over the years, so I don’t appreciate that I have had to staple my hems back in more than once at work. Ann Taylor Loft, I adore your clothing, but I already returned one shirt within a week for getting holes in it, (I will give you props for just letting me swap it out no questions asked), and now I have another shirt, only in its second season of being worn that is getting holes along the seam of the sleeve.

I’m tired of buttons popping off  my coats and shirts because manufacturers were too cheap to use the appropriate amount of thread. I’m sick of following washing directions and having my clothes look nubby after a handful of washes.

I just bought this shirt at TJ Maxx maybe three weeks ago. The first time I washed it, a thread pulled and ruched the side of the shirt. I was able to fix it. The second time it looked like this:

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A little out of my realm of expertise this time. Look, I got the shirt for $12. I don’t expect to pass it on to my grandchildren. But two wears? Six dollars per wear is not economical. I’ve also misplaced the receipt. So now I have to go out of my way to TJ Maxx to see if they will even deign to give me store credit. I put the photo on both the designer’s Facebook page and TJ Maxx’s page. TJ Maxx referred me to their customer service number, even though I just wanted to know if it was worth my time to drive out to the store given the circumstances of no receipt and it being worn. So far no response from the designer Lily White. I mean, look, these things are bound to happen. The problem is that it is happening too frequently. Maybe I should expect this of a $12 shirt at TJ Maxx. But those $80 Express pants? I think not. (Update: Went to TJ Maxx today 5/1/13 and explained what happened to cashier. After making it clear via her facial expressions and body language that she could give a crap, I was told that unless I could find the same shirt on the racks, there was nothing that could be done. So I searched and searched and finally found one with the same design, different pattern, equal price. With the same, “give a crap” attitude I was given store credit. I acknowledge having worn it and misplacing the receipt complicates things, but an employee who fakes not being annoyed and offering an apology goes a long way. Since that didn’t happen, I will return to redeem my store credit, but after that, this impulse shopper will shop elsewhere.)

It’s time for all these companies to stop treating their customers like crap.

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

Why, why, why is it so hard to get my child his medication?

I am an incredible multi-tasker. I am currently writing this blog, on hold with United Healthcare, and having a mental breakdown. Congratulations! You f*&^%$# finally made me cry. I’ve been pissed. But you hadn’t made me cry yet. That took a conjoined effort of United Healthcare, Optum RX, and Accredo Pharmacy.

It started when we got a letter from United Healthcare that they were switching from Medco Pharmacies (which houses Accredo where we get Connor’s Sabril) to Optum RX pharmacies. All mail order prescriptions should automatically switch over. Of course this raised my cautious red flags. So as soon as the change happened April 1 I called to check the status. After talking to a couple different people, it was established that Optum doesn’t carry Sabril (vigabatrin). I was referred back to Accredo. “So everything stays the same?” I asked. “Yes.” I was told. So today I called Accredo to refill the prescription. First time it picks up to silence. So I hang up and call again. Someone answers this time. They would not fill it as my prescription had been transferred over Optum. “Oooookay. So I call them to fix this?” “Yes.”

I call, listen to more piped music, and give all my personal info twice more to Optum to be told that it’s on Accredo to call and ask that the prescription be sent back, and that they should have offered to do so. Call Accredo again. Again, their line picks up to silence, and I have to hang up and call again. More holding. I tell them that they have to call Optum and get the prescription back. They tell me they can’t because I have no active insurance with them after March 31. They still can’t fill it. “So I call united Healthcare and tell them to do what? What exactly do they need?” I’m told to call UH and ask them to open an active account with Medco so Accredo can fill the prescription.

I call United Healthcare, more holding, more giving all my info, lots more holding, trying to explain, getting transferred, and I end up back on the phone with someone at OptumRX again. NOT what I asked for. He again starts the process of refilling Connor’s Sabril. “But two people told me you don’t have it. You’re saying you can fill it now?”

“I have it right here. I’ll take care of this for you.” I wanted to hope for a second, but deep down I knew where this was going again. “Oh, we have the prescription, but we don’t actually have the med.” Yes. Exactly what I’ve been saying. YOU have the prescription, but can’t fill it because you don’t have the med. Accredo has the med, but doesn’t have the prescription or authorization.

Finally, I do what I should have done all along and call SHARE, who works with the manufacturer to deal with prescriptions. They are now working on getting United Healthcare to give an authorization to one of their participating pharmacies so we can refill his prescription. Obviously who I should have called first, but for the love of God, people aren’t psychic. Those of us outside the medical world don’t understand the inner workings. I don’t fully understand the Lundbeck (manufacturer)/Share/Insurance connection. i just know my kid needs his stupid medication. And nobody offered me any instruction on how to handle this. All I got was a letter from my insurance making it sound like a simple switchover.

I guess I am not meant to understand this world of medical mysteries. I suppose I will never know the following:

1. Why a mail order medication can be so difficult to get your hands on, seemingly more difficult and a kazillion times more expensive now than back when people had to get it from Canada because it wasn’t approved here.

2. How a cranial remolding helmet can appear to be covered, I can be charged our uncovered 20 percent, only for United Healthcare to later deny the claim, forcing time to be wasted on an appeal.

3. Why CHOA employees never return phone calls. (Hey Wanda in medical records, it’s been over a month, but fortunately it turned out I don’t need that paperwork after all, so I guess just don’t worry about it.)

4. Why Obamacare doesn’t attack the heart of the country’s issue, which is that hospitals are charging increasingly outrageous prices with no rhyme or reason, operating off of Chargemasters that aren’t standardized or remotely in line with the actual cost of care, and are allowing this medical crisis a major role in the country’s debt.

Et cetera….et cetera…et cetera…

And to top it off, seizure activity is definitely back. I suspected I was maybe seeing very occasional absence seizures, but then yesterday we saw this. So thank you, hospitals and insurance. All the families dealing with health issues can count on you, that no matter how strong they are, how positively they approach their problems, you will always be there to try to break us.

And I guess now, 2.5 hours after getting up, after writing this blog in a mere fraction of the time I spent on the phone this morning, I will finally have my breakfast.

Oops! I Passed on Too Much Pretty in My DNA.

Connor has never been mistaken for a girl. Even when he barely had any hair and wore onesies that were up for debate. But suddenly in the last few weeks:

At Kroger: How old is she?

At Antique Store: She sure has some rosy cheeks.

On Internet: What a beautiful little girl.

In Some Other Place: What’s her name?

This has happened nine or ten times recently. Well, he is the prettiest baby ever. That’s not his fault. The long wispy tendrils curling over his ears and starting to climb down his collar…those aren’t his fault either. They’re mine. I always thought moms that couldn’t bring themselves to cut their kids’ hair were overly-emotional weirdos. And then his first birthday, when I said I’d cut his hair, rolled around. Apparently the same disease that makes me call things “foody food”, “milky milk”, and “sleepy sleeps” has invaded my ability to be the indifferent badass that once thought the following were good ideas:

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I’m lying. I still think they are.

Nonetheless, Chris seemed uncomfortable with the dichotomy of having always been told Connor looks exactly like him and now constantly hearing about how adorable his daughter is. Plus, I feel really awkward correcting people. So here it is. Connor’s first haircut, two days before he turns 13 months.

Before:

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After:

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Let me help you with that. I love sharp objects.
Let me help you with that. I love sharp objects.
Maybe this toy will distract you from grabbing for the scissors.
Maybe this toy will distract you from grabbing for the scissors.

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It's gonna take two of you to stop me from getting that razor.
It’s gonna take two of you to stop me from getting that razor.
Can I say, "That's hot!" Or will I have to pay royalties to Paris Hilton?
Can I say, “That’s hot!” Or will I have to pay royalties to Paris Hilton?

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Calling Guest Bloggers!

IMG_2422I’m looking for guest bloggers dealing with TSC for the month of May! You can share your personal story, the story of a family member, or a topic in TSC. For example, school and IEP issues, making friends and family understand, challenges in living with it as an adult etc. Pictures welcome. At the end of the post I will include a link to your blog, Etsy Shop, TSC fundraising page, whatever you like as long as it’s YOUR page.

And by the way, I’m always interested in hearing from guest bloggers on other topics as well. Got a blog? Share your story here  and link to yours. Mommy stuff, fun things, travel, food and other medical conditions that you want to spread awareness of. E-mail me at pin.the.map@gmail.com.

 

Tanglewood Farms…and serious matters, too.

Does anyone know how long the ear-shattering shrieking phase lasts? Asking for a friend.

Connor is continuing to do well. Since mastering sitting at the beginning of January he has increased his range of reach around him, and pulls himself back to sitting from positions from which he would have toppled right over not so long ago. His flexibility is frankly disturbing. But when one wants toes, one will have them.

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If assisted into a crawling position he can maintain it and lift an arm to reach for a toy. He can also hold himself in a standing position. The key is to now help him achieve these positions independently. Oh, and move while in them. My lower back longs for the day.

The good news is that we still haven’t seen any eye-rolling seizures since February 10. The bad news is that I suspect he may be having occasional absence seizures upon waking. I’ve counted maybe 6 or 7 instances in which shortly after waking up, he purses his lips tightly and stares off to the side. They aren’t very long–maybe 20 seconds or so. They don’t seem to have any lingering effect on him, but it’s still frustrating. We get these little windows of no seizures, and then something changes. We see the neurologist again on the 24th so we’ll discuss it then. Of course, this is much better than what was going on before.

As I mentioned, his current mode of communication is high-pitched shrieking. It’s kind of funny until he keeps it up for half an hour. Or we’re in a restaurant. He’s otherwise so well behaved in public, but his love of his own voice shattered some mimosa glasses at brunch the other day. Hear it for yourself. But don’t click that at work. People will think you are seriously weird. And then watch this just because it’s funny to see how much he loves seeing himself.

I’m having trouble gathering my sarcastic thoughts since I’ve been watching CNN coverage of the bombing at the Boston Marathon all day, so here are some happy pictures of our trip to Tanglewood Farms, an awesome petting zoo of miniature animals in Canton, Georgia.

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The only downfall of the weekend was that Connor exhibited some signs of allergies. After we had been at the farm for a bit, he began to rub his face into us again, and his eyes seemed itchy. This also happened the day before at a friends birthday party. Pollen? Like Daddy? Orrrr….

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was it the pony at the party? Pollen or farm animals? Pollen counts were at record highs (or so I’m told. Pollen only affects me as far as irritating me by getting all over my car and porch rocking chairs). Time will tell…