My Childhood Idol Coped with Chronic Illness Too!

Every oh so often I get nostalgic for the great 1990's. For me, my childhood represents a simpler time when I was blissfully healthy and carefree. I was always singing and dancing. And so were my friends. I fondly and distinctly remember one of our favorite childhood pastimes was to "play TLC." We would spend hours getting dressed up like TLC, performing dance routines to their music videos that we had memorized and singing along with the lyrics of every song. We even did our makeup to do our best to resemble our respective songstresses: T-Boz, Left-Eye and Chilli, the CrazySexyCool girl group that dominated the 90's and revolutionized the faces of hiphop, R&B and pop music. They were the epitome of girl power long before the Spice Girls ever came to be. All I ever wanted to be when I grew up was a member of TLC. Nevermind the fact that I was a little white girl from the suburbs. In my eyes, they were the coolest, prettiest chicks on the planet. I identified with them. They were three petite young women who could sing and dance with style. They preached about self-esteem, safe sex and friendship among other things. I absolutely idolized them. I'm certain many other little girls of the '90's shared my sentiments.

The other night I finally watched CrazySexyCool: The TLC Story, VH1's biopic of the epic girl group's rise to stardom. I was extremely impressed with the casting of this film, as the actresses were dopplegangers of their characters, especially 'Lil Mama who portrayed Lisa "Left-Eye" Lopes with a keen awareness of her character. She had clearly done her homework. I also appreciated the music video reenactments which were spot-on. I had a fun walk down memory lane but was also shocked by the level of turmoil each TLC member experienced behind the music. Tionne "T-Boz" Watkins' story struck a nerve within me as it hit particularly close to home. She battled a rare chronic, genetic and life-threatening condition called sickle-cell anemia and was hospitalized for it on several occasions. Initially she kept her illness a secret from the public and the press as it is largely an invisible illness. At the height of TLC's fame she came out about her illness and went on to become a spokeswoman for the Sickle-Cell Anemia Association. She was told she'd never live past 30 and never have children and she has done both. She has a beautiful little girl named Chase and is still managing to live a full life in spite of her illness.
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Her voice is still as rockin' as ever, as she and Chilli reunited in the recording studio at the end of the movie. What I didn't realize was that while TLC was touring, their second manager scheduled hospital breaks for T-Boz and had EMT's on hand at all times who were prepared to manage her condition. When I was a little girl I had no idea what my favorite singer was going through with her health behind the scenes of what I perceived as a glamorous lifestyle. Now that I have a better understanding of their personal struggles, I have even more respect for the girl group I already revered. They will always, always be my favorite. If I could ever do lunch with the remaining members of TLC, my life would pretty much be complete.

For more information about sickle-cell anemia, please visit http://www.sicklecelldisease.org/.

All I Can Do is Cry

Lately I have been at a loss for words. This past week has been better health wise but more emotionally draining than I could have ever imagined. Last SuperBowl Sunday started out with some bad news: my great aunt passed away at the age of 89. She lived a long and happy life and up until the last years her wits were all in tact. Her name was Betty but as kids we fondly referred to her as Betty Boop and she proudly embraced the nickname. Although her passing did not come as a huge shock, it still filled me with a stinging sadness. My mom and I managed to go out shopping for a little bit in her honor. Betty was a shopaholic and a half. I knew she wouldn't want everyone to be moping around upon the news of her death so I figured it would be best to get out of the house for a bit and try to remember the good times.

When we returned home a few hours later, I checked my email and my Facebook account and clicked on a link to a breaking news story that left me screaming in horror. A local murder suspect whose wife has been a missing person for months blew up himself and his two young sons that Sunday afternoon. I remember feeling the same way I felt on 9/11: for a split second thinking it was an accident but then all too soon realizing that it wasn't. This disturbed man had deliberately murdered his own sweet and innocent children. This story hit particularly close to home because I am friends with a family friend of theirs and have been rooting for those two little boys ever since their mother's disappearance two years ago. It was a shocking, heartbreaking day. Our whole community is still grieving the loss of these two little boys and will be for quite some time to come.

Maybe it was all the emotional stress, the fact that I can never seem to shut my brain off after traumatic events, or the fact that I don't seem to sleep much during stressful times, but my emotions seemed to manifest themselves physically this week. I passed out in the shower for the first time. I don't normally pass out. I can usually tell when I'm getting close and sit or lay my butt down before it happens. I felt very lightheaded and disoriented in the shower and attempted to get out but then found myself waking up on the shower floor with the warm water running over me. I also managed to break my plastic shower chair in two on the way down so I imagine I didn't fall too gracefully. I have been a bit sore ever since and I assume it also had something to do with the heat of the shower.

I did not go to the doctor immediately afterwards but I did schedule an appointment with my electrophysiologist (the soonest I could get in is March 1st) to report my passing out to him and to obtain the results of a yearly echocardiogram that I am going in for later this week. My last echo was done in 2008 and the geneticist who diagnosed my EDS recommended that all EDS patients go in for an echocardiogram at least every other year as a preventative measure to detect any structural cardiac abnormalities.

Tomorrow I have an interview with an SSI representative to determine whether or not I am eligible for any benefits. My lawyer informed me that my hearing for disability is another 9 months to a year away so that I should take the SSI interview for now and cross my fingers that it goes through. I have a very small retirement account from my old employer that may render me ineligible for benefits at the moment. And quite frankly, I resent having to "spend up" my hard-earned retirement earnings at a 50% loss simply to obtain the benefits I have previously earned by working. Either way I hope to have more information tomorrow and I'm really hoping that there is some positive news around the corner.

On a brighter note, I'm finally ready to resume Dr. Levine's exercise protocol for POTS and have a hunch that my results will be promising since my symptoms have responded positively to exercise in the past. My laparoscopic appendectomy scars are barely noticeable anymore, in fact they're almost gone! My skin healed very nicely after the surgery and I am pleased that I didn't experience any major complications in the healing process. The surgeon has cleared me to start exercising again at any time! I am glad that nasty old appendix is outta me and extremely thankful that I made it through both the surgery and the recovery successfully!

Let's see...what else have I been up to lately? Still working part time from home although it's a challenge some days I feel like I am finally making some positive progress at work. In my spare time I have been catching up on a lot of shows: Pit Boss, Dance Moms, Teen Mom 2, Revenge, America's Supernanny, Hoarders, Intervention, even a new one called Mud Cats. It's like TLC's Hillbilly HandFishin' but better! There are still a handful of other shows, new and old, that I also intend to catch up on in the near future. I figure vegging out in front of the television will be a nice way to recover from the rigorous exercise my body is about to endure.

I am also hoping that the exercise regime will serve to distract me from my own emotions right now. I have a really hard time trying to wrap my head around the concept of death and the finality of it all. I really need to pour myself into something so that I don't have so much time to think about all the injustices and cruelties in the world. If anything positive came out of this week it is the fact that I appreciate my own family more. My two little cousins are the same age as the two boys that were murdered. Their family will no longer get to play with them or delight in their youthful energy. Although my cousins are rambunctious and have extreme behavioral problems at times, this weekend I found myself able to overlook that and just be thankful for their presence.

Here I sit somberly on the eve of Valentine's Day and I can't help but think that Heaven gained some good ones this week. My great aunt Betty, the young Powell boys and the inimitable Whitney Houston. These losses leave me deeply saddened and I have spent a disproportionate amount of this past week with tears in my eyes. The following song says it all.

Bygones!

A friend of mine recommended a book to me a few years ago called 'Heal Your Body' by Louise Hay. It is a quick read, a handbook of sorts about the emotional roots of physical ailments and illness. While I am a firm believer that most physical problems are no one's 'fault,' I do believe that a lifetime of negative emotions brewing on the inside can contribute to developing a physical health problem or aggravate an existing one. Many health problems (ulcers, heart attacks, etc) are thought to be closely linked to stress. Whether or not this theory holds any testable scientific validity, it certainly couldn't hurt to let go of negative thoughts and energies that often hold us back in life or keep us stagnating in the same place.

Change is healthy, positive change is of course best. I for one, tend to hold onto and bottle up too many negative feelings and it definitely doesn't do me much good. So this year, I am not going to make a long list of resolutions as I have done in the past. I am simply going to try to achieve one: to let go of all negativity. It will be no easy feat, I am sure. But I have to give it a try. I am tired of feeling victimized by my father and his side of the family. Tired of being dismissed by certain relatives here. And of course, very very tired of dealing with chronic illnesses. I feel like I have lost touch with who I used to be: happy, carefree, independent, energetic, fearless. The old me is still in there somewhere just itching to get out, but I have lost touch with her these past four years. I would love to feel like myself again, physically and emotionally. I may not be able to get my physical health back completely, but I feel like I have at least some control over my own emotional well-being. A big part of that I think, is letting go of all the negative thoughts, letting bygones be bygones and trying to get back in touch with the real me.

What is your greatest goal for the new year? If you could only achieve one, what would it be?

Am I Overly Sensitive?

After abruptly bursting into tears today after my mom announced that Trader Joe's no longer carries my favorite chocolate chip cookie ice cream sandwiches, I felt a little silly. I wondered if I perhaps have yet another problem to add to the list: over-sensitivity. Lately I have become a bit of a crybaby as the tears seem to come at the drop of a hat. The only other time I can recall crying over such seemingly insignificant things was senior year of high school when I might have been a bit stressed out/sad after losing my great grandmother.

One night a popular anchor on the 5:00 news callously announced that Keiko the whale, otherwise known as the orca Free Willy, had died. Just like that. She actually used the word "died." Didn't even use a euphemism for it, and then promptly moved on to the next story. Gave his death maybe ten seconds of airtime, at max. The second I heard the news (and the way she delivered it), the tears came shooting out of my eyes involuntarily. And I just couldn't control it. I cried and cried and cried and couldn't even pinpoint why I was crying so much over a whale and couldn't even bring myself to stop. I remember my mom feeling sorry for me, perhaps feeling sorry for how pathetic I was and saying, "Oh Kristina, you're just under so much stress right now. I know that movie meant a lot to you." And truth be told it did. That was my all-time favorite movie growing up. My best friend and I watched it over and over, maybe hundreds of times. We had even memorized the moves to Michael Jackson's music video at the end of the VHS tape. As special as that movie was to me, I remember thinking that no sane person would cry over such a thing.

The next day at school I had a heavy heart but put on my usual happy face. One of the few friends who knew that my real favorite movie was 'Free Willy' asked me if I had heard the news. Of course, some nosy and obnoxious boys who sat behind us asked "what news?" and she responded with "Keiko the whale passed away yesterday." The waterworks exploded from my eyes again. In the middle of material science class. In a room full of boys. I was crying at school, more like sobbing. And there was nothing anyone could do to comfort me. It didn't help that the two boys behind us were now laughing as if my sudden tears were the funniest and most outrageous thing they had ever seen. Embarrassed beyond belief, I excused myself to the bathroom and took a long lunch that afternoon, even arriving late to the latter half of the class. Luckily the teacher was sensitive and didn't say anything to me at all, probably didn't want to ruffle my feathers. Here I was, number one in my class, the president of nearly every club and student organization with a reputation to uphold and I was hysterical, over a whale. A whale I had never even met.

The next few days were even more torturous as the two boys, as luck would have it, shared many classes with me. They began to torment me. Of course, it wouldn't have looked much like tormenting to an outsider. All they did was say the words "Free Willy" or "Keiko the Whale" mockingly in my presence and I burst into tears. This torture went on for about a week. It was like a conditioned response. Anytime I heard the whale's name I cried.

Lately the same kind of thing has been happening to me. Not about any one thing in particular, but just little things that will set me off. For instance last night I opened the fridge to make myself a sandwich and grabbed the pickle jar from the top shelf. Attached to the pickle jar was a sticky (and heavy) jar of caramel that fell smack dab on the top of my left foot, same side I am still recovering from a sprained ankle on. I have a nasty bruise on top of my foot today and it hurts when I touch it but it is really no big deal compared to everything else going on in my life. And in the grand scheme of things it was nothing that should have made me cry. The problem is, it's not any one big bad thing that elicits the tears, but rather a series of little things that happen every single day and the cumulative effect of all this bad luck seems to be me bursting into tears literally at the drop of a jar. Lately it just seems like the universe is against me and dispensing subtle daily reminders of just how powerful and relentless he is. Like a big, fat bully. Mr. Universe is not always kind, as many of us know all too well from dealing with chronic illness on a daily basis for years on end. But does Mr. Universe really have to throw a sprained ankle, mounting medical bills, an excrutiatingly painful 3-month TMJ headache that insurance won't cover, relatives who desperately need to see the shrink, an overheating imac and a broken printer into the mix? Take away the one thing that gives me any solace (TJ's ice cream sandwiches) and it's a recipe for tears. Maybe because it feels like Mr. Universe is launching a personal attack on me.

I feel pathetic when I cry over such minor issues, but I really can't seem to control it lately. Is there something wrong with me? Other than the obvious of course. Do any of you experience moments of extreme and sudden sadness? What do you do to combat these emotions?