I've never created a page like this in the many years I've been blogging, but maybe it's time, and hopefully it will dispel the hundreds of rumors and the misinformation that is constantly spread about me by my favorite band of haters. In the name of transparency, here goes:
I am 56 years old, and my birthday is in July. So I'll be 57 soon.
I am 100% totally disabled, sanctioned by both the State of Massachusetts where I live, and the United States Government. This means that I am UNABLE to work due to my health concerns. It does not me that "everyone can work" and that I'm sitting on my butt all day long eating french bon-bons and watching Oprah. I hate Oprah.
I have a congenital heart defect called obstructive hypertrophic cardiomyopathy. This means I was BORN with the heart problem and have had it my entire life. It also means that my heart is very enlarged, works about twice as hard as a normal heart, and is rigid, overworked, and just about tuckered out.
Because of my heart condition, I've developed congestive heart failure. This means that my heart is so overworked and exhausted that it just doesn't perform well, which makes me very very sick. I manage my CHF with medications, daily monitoring, SMALL amounts of exercise (exercise can kill me), a special diet, a defibrillator installed in my chest, and lots and lots of rest. If I weren't managing my disease I would be dead. Since I'm still alive, it's apparent that I am both following my doctor's orders to the letter, and making sacrifices to ensure that my health is the best it can be, considering.
I have THREE cardiologists. They all specialize in some faction of my heart problems. They are all Harvard trained physicians, on staff at Harvard Medical School, and work at a Harvard supported hospital. Thus they know MUCH more about my heart than you do, especially those of you that think you know all about my particular heart without ever meeting me, seeing an echo, an EKG, or hearing my heart. Believe me, you don't know SHIT about my heart, even if your uncle George had something that sounds similar and he's FINE now. Every heart is different, and mine is especially different. I'm going with my three Harvard trained cardiologists over some anonymous moron on the Internet for my health care. I'm sure you would too.
I also have borderline diabetes which is managed with oral medication and diet. Since I was diagnosed I have lost 85 lbs and am still losing. Because I am insulin resistant due to PCOS, weight loss is difficult but I have been extremely successful despite almost no exercise.
The main effect of my diabetes is that I have developed neuropathy in my feet. It can be painful, but is more of a nuisance than anything else.
My final health issue is called Sjogrens, and it is a fairly common autoimmune problem in women over 40. I my case it causes dry eyes due to a missing enzyme in my tears, and a dry mouth. Otherwise, it's a forgotten issue.
I have two children, twins, that are 16 years old.
They are both special needs kids.
My daughter has a non-verbal learning disability, which some people place on the autistic spectrum but she is NOT in any way autistic. She has issues with language and understanding and often needs extensive explanation for what seem like obvious cues. Otherwise she's beautiful, very popular, funny as hell, and a real delight.
My son is ADHD and Bipolar. He is also profoundly gifted and extremely talented in his own quirky way. He will be attending college in the fall. His ADHD is very severe and causes him to have a lot of difficult and irritating habits like poking and other impulsive outbursts. He is an excellent student despite never doing one speck of homework his entire high school career, and will be receiving a large scholarship for his school performance at his graduation. I'm SO proud of him for getting his act together after a very difficult sophomore year, and graduating 2 years early with an excellent GPA.
I love both of my kids with every fiber of my being. They are not easy kids. I am well aware of that. But my family gets a LOT of outside help from DMH, their therapists, and our family therapy. None of the agencies and therapists think that anything in our household is wrong, unusual, out of control, or in any way negative towards the children. Since they work with us and know our family, I'm going to be parenting based on THEIR recommendations and not yours. Sabe?
Both kids will remain home with me next year as my daughter finishes high school and my son begins college.
We have two cats, Ringo, aka The Worthless Pet, and Pepper, aka Cutest Kitty in the Whole Wide World. They are both spoiled rotten and we are at their constant beck and call.
I taught in a public high school for five years, and then at Northeastern University for another 10 years.
I worked for 22 years in the software industry, starting out as a software engineer at a war mongering defense company that is no longer with us, and then moving on to software development, documentation, user interface design, and then ending up in middle management as the director of a user experience department.
In 2001 I was laid off from the third start-up in 2 years during the height of the software bubble. We were living in Silicon Valley (pooh pooh pooh) and there were just NO jobs at my level in my field. I was out of work for several months and then finally got a verbal offer from a company with headquarters in New York City. The written offer was to arrive on September 12, 2001. You can guess the outcome of that offer, and eventually in April, 2002 we moved back to MA.
During that long bout of unemployment I used up my savings, my kid's college funds, and then 401K to live. It's all gone. ALL of it. We lived for almost 16 months on that money, so I don't want to hear one freaking word from ANYONE about how I didn't plan ahead, blah blah blah. OK?
When we came back to MA there were no jobs here either, but the cost of living was much lower, the medical services far improved from anything the Bay Area offered (and yes, we used Stanford exclusively), and we had a whole bevy of friends and family that welcomed us with open arms. We have never, not for one second regretted moving back.
The year after we moved back, my heart failed for the first time and I was hospitalized for a long time. After this experience my doctors expressed the opinion that I could no longer work and I applied for SSDI, which is social security disability insurance.
SSDI is just like regular SS in that it is based entirely on what I put into FICA during my long working career. Because I had high-paying jobs I put in more FICA, thus I get back a small, but decent amount of money each month from SSDI.
I do NOT get food stamps.
I AM NOT on welfare.
I DO NOT have subsidized housing and pay market rate for a rental townhouse that is falling apart due to the landlord's lack of ANY upkeep whatsoever.
I am on a waiting list for disabled housing in my community. The average wait is 20 years. I've been waiting 7 already. Since it is unlikely that I will be alive in 13 more years, this is a futile experience but I soldier on.
I DO NOT get free health-care. I pay for both my Medicare (everyone does) and my supplementary health insurance which takes care of my prescriptions. I also pay for my children's health care, as required by the Commonwealth of Massachusetts, which has mandatory health care.
Now that this is clearly stated, I expect that anyone who accuses me of being a leach on society will STFU. Not that they will, because there is nothing more hilarious than some bored housewife in Sacramento who is living off her husbands meager earnings complaining about how she's supporting me. The only person supporting me is me.
I am currently enrolled in the State Dept of Ed program to be certified as an educational advocate. Once I finish the program and my intern hours, I can represent parents all over the commonwealth who are dealing with crazy school systems. I do this now on a volunteer basis, but once certified I plan to charge a sliding scale and want to represent impoverished parents who can't get help and are unable to fight the schools on their own.
I love to garden, read, watch TV, and cook.
I attend a weekly support group for parents of unusual kids. This group is an absolute Godsend and I've made really wonderful and supportive friends who totally "get it" from my group.
Lastly, anyone that harasses me in any way on this website is going to find themselves IP-banned. Some people are already on the list and I haven't yet finish building the site. So try not to piss me off. OK?
If you have any questions about anything on this list, be sure to email me and ask. But don't go making things up about me that you know directly contradict what's on this list. If you do, who's gonna look like the idiot? (Hint: not me.)