Feb 13, 2012

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.


  1. Passing out in the shower! Wow, that sounds scary. My dysautonomia is much more mild and I've never passed out from it, but yeah, showers pose a problem from time to time. At 24 years old, I swear by my shower seat.

    I've gone one round with SSI/SSDI so far and didn't get the money. Apparently because I still work (part time) and make what little bit I do, I'm ineligible. It sucks trying to take care of yourself and still want to work and be "normal" but the system is so screwed up that they don't allow it to work that way. I think it's great that you have a lawyer to help you out with it though. Hopefully good things will come for you this year and you'll get the break you deserve.

    Congrats on a successful surgery and healing well. That's a great feeling, to know that you'll feel better after going through hell. Every little victory counts.

  2. It was scary indeed. I rarely actually pass out so whenever I do it throws me for a loop. Apparently once you have passed out once your body 'remembers' how to do it or something. It is actually your body's protective instinct kicking in to get more bloodflow to the brain. Lately I have been taking shorter, cooler showers as apparently the shower is a common (not to mention dangerous!) place to pass out. I actually broke my shower seat and had to get a new one.

    Sorry to hear about your social security struggles. I think you should try with an attorney perhaps. I am only able to work part time from home and even that is a huge struggle. My body is barely reliable enough to do that and it seems that taking care of myself is a fulltime job.

    Thanks so much for the well wishes, that really means a lot to me! And you're absolutely right, every little victory does count! :)