Life is not easy. Especially when you are in a family of invisible illnesses and disabilities. It can be serious, funny and downright hard! But we make it. Just like everyone else. We just do it in a different style.

Saturday, January 31, 2009

Changes in Social Security Disability Process

One of the blogs I now follow had this post. I found it to be very interesting. Right now, I have a case open for my son, and we have received our 1st denial. I have another 45 days to appeal it. I don't necessarily need the Fast Track process for him, but when I filled out the papers for myself, we went through a horrendous time of being practically penniless.

Though the tone of the article is hesitant and suspectful, I for one, hope that something is done.

Please enjoy:

Updates, Updates - Part 1

Lately, this blog has centered on me. Sorry about that. Maybe it is me all the time that needs the most advocacy! LOL!

Today, I want to start giving the updates for everyone else in the house.

Let's start with the hubby. He's Stubborn. As you can see, he needs a capital S.

We have had the CPAP for three weeks now and do I not wake up every morning between 3am and 6am, because he is tossing, turning and NOT wearing the mask!

The first reason/excuse is that he keeps forgetting. The second one was it was suffocating him. Huh? How can something supplying oxygen to your lungs, brain and body suffocate you? He has a full face mask and anybody who has every seen these things knows they are huge. Not the thing to feel claustrophobic in.

I reminded him that he needs to wear it at least 4 hours a night for it to even be effective...

The third reason/excuse came after my speech. "Well," he said, "I must be doing at least 4 hours, so that's why it is off by the time I start waking you up."

You have to have been there to see my blank, staring face. "How can you have it on for 4 full hours, " I retorted, "if you don't go to bed until 12am or 1am!?!" "And, then start tossing by 3am!?!"

Do you know the old saying, "Charity starts at home?"So does advocacy.

So, we then had a good sit-down with the other two Hosers in my house and everyone contributed to the conversation. I sat in the corner like a determined arbitrator and advocate, armed with the computer ready to spew out the evils of untreated OSA. I really didn't need it. My two other Masketeers know first hand what can happen. By the time, they finished with him, he slunked away, like a properly admonished child and the next night, I slept until 7am!

I want to really celebrate, but this is not over. Why, with the amount of Depakote he takes is he still having breakthrough seizures at night? And, if he is feeling like he can't breathe, are they exacerbating his condition or because of it?

His neurologist told me, we may never get it where he is seizure free. Why? I think it is time for a follow-up and ask some hard questions.

As for the anxiety/depression disorder, he is AWOL on that, too. Hasn't seen the therapist in months. In his defense, we have been a little tight and the therapist cost $40.00 each visit. But he has also stopped the meds.


To give him credit, he has not slipped back into the mood swings, which were surreal and dangerous to watch. But, he is also not advancing. He is battling this condition alone. Not good.

Here's where if anyone has suggestions, I am willing to listen. I still believe he has so much to offer, but is stuck. Like a broken record (remember those? No? Okay, like a scratched DVD) that can't get past a certain spot. Anything anyone thinks they can suggest, please do.

Tomorrow, I will discuss Andrew, the light of my life and I think, my greatest accomplishment.

Take care,


Thursday, January 22, 2009

A thought is A'brewin"

Lately, a thought has been taking shape in my mind. Not the greatest shape, mind you, but shape nonetheless. I find myself happy about my progress in school; how I couldn't have done this in a brick and mortar school and how as an end-user, I really love technology. I see how it has made my life broader in scope and easier in task.Then, I think about if I didn't have all these techie accommodations?

What if, I could not afford Dragon Naturally Speaking or Natural Reader with two voices? What if I never received a CCTV from DORS? And what if, my husband didn't have the project that allowed him to buy my 22 inch screen? What even about my cable internet connection that is paid every month allowing me endless hours to research the internet and connect with so many people in the world, disabled, chronically ill or otherwise? What would my life be like?

There was a time in my life when I knew and lived the answer to that question.

Before my back surgery, I spent a year house-bound and nearly bed-bound. I laid in a bed most of the day, took 16 pills to calm my body and abesent-mindedly watched television. I don't remember much of that year, but I know I shed a great many tears and made a great many promises to God. I promised I would help others. I promised I would do something important with my life. I promised I would have more fun and be less controlling. Having no control does that to you. If I could just get out of that bed.

So, back to this idea. I am trying to find a way to combine my life's experiences with disability, chronic illness and technology. I don't know if I want to train or write or travel and speak, but I want to let others know that there are options. There are opportunities and being disabled does not have to stop you.

Technology is a wonderful component of that idea. How we can use it to open doors for people. How we can restore some independence to them. How life can go on, happier, more successful and fulfilled.

I just came across the statement from President Obama and Vice-President Biden about their stand on the disability community in this country.

Here is the link:

There is so much to do within that statement. So many areas to cover, and I have decided I would like to be a part of it. Somehow. Technology and I.

Stay tuned.


Wednesday, January 21, 2009

The Day After

Surely, by now, everyone like myself, would like to NOT see Obama's name plastered all over the place any longer. I couldn't bring myself to write a post yesterday. I twittered 150 words and left it at that.

For one, it was just too emotional. Human beings get this happy and show such spontaneous pride and joy on so few occasions. It was D.C turned into Disneyland with everyone smiling and feeling good and safe. How surreal in such a place. It was truly a party atmosphere. I could feel it even through MSNBC bland commentary.

Secondly, watching elderly black people look out onto the scene with almost disbelief was more than I could stand. These people remember not so kindly days. As one retired Tuskegee airman put it, back then, after WWII, the idea of a black president was so "far fetched," that the thought never entered his mind. And there he was, seated like a dignitary, staring in what looked like utter inability to believe his own eyes. He had lived to see the day.

The final reason I wish it would die down some is that the country is in quite a mess, and we, yes I wrote, we, have a lot of work to do. The President and Congress have laws and initiatives to produce. There are investigations that have to be launched in the financial debacle that has overtaken our investment industry. There are wars to slowly pull out of and jobs upon jobs to create. Retiring people have no pensions. People are still losing their homes. High school graduates face a smaller job market and dwindling funds for higher education.

And, I have to get back to doing my part; finishing my education, so I can add to the talent needed to keep this country No. 1; continuing to raise my two children to be sound citizens, who are the future of this country; and contributing in anyway I can to make sure Obama can do what is necessary to "remake" America.

So, this is the only spot you will hear of me talking about him (he is gorgeous in a tux!), his wife's dress (you go, girl!) and his kids (Malia and Sashs look positively angelic!). After this, it is time to get back to work. I have a headcold and two homework ssignments due tomorrow. After all, it is the day after the biggest party in America, and life goes on.

Sunday, January 4, 2009

What the Heck Happened!?!

The title sums it up for me. I don't even know what to tell you.

Sometimes, I wonder if I will ever be a normal person. I mean, a person who gets up every day, can get their day started and go through it relatively successful. And then continue that for a month.

When I look back and see that I posted the day after Christmas, and realize that the following week, I was so sick, I barely got out of bed most times, I don't know how I am going to make it in this world. I mean, losing an hour is one thing, but a week!

It started with two cups of coffee two days straight. Sunday, the 28th was spent in the bathroom and in bed. Won't go into detail, just think, more than 16 times running down the hallway!

Maybe that sent my body in a tailspin. I remember talking to my enrollment counselor one day, my academic advisor on another, and then BAM!!! Migraines and a crazy sore throat. I couldn't even breathe right, talk right and any light whatsoever sent shock waves through my head. That went on for more than four days. Or maybe it was three. I don't know. I lost track of the time in there. I spent the days too fatigued to move. Too sore to swallow food and popping prescription Ibuprophen to keep the pain and swelling at a level so I could at least say hello to people. There was nothing to do for the fatigue. I slept morning, noon and night.

In hindsight, maybe it was an allergic reaction. We had done a thorough dusting and vacuuming of my bedroom that kicked up a lot of dust. I will now have Benadryl on hand to see if it will lessen the blow, but bascially, I crashed and burned for several days. It got so bad, my throat started closing up and I could feel air going back and forth. The allergy med kept the sinuses from blowing up, but the damage was done and I suffered in pain for a good bit. Missed most of New Year's Eve and New Years Day. Oh well, Happy New Year this 2009!

One good thing came out of this, though. My husband cooked! I mean, not take-out, not fast food, a real meal with a meat, starch and veggies. A whole salad no less! Basically, it was that or starve. Necessity is the mother of get up off of your butt, so he got up, got over his fear of burning down the house and made a fabulous dinner I was told!

So now, he CAN NOT say he can't do it or quickly reach for a menu. All of my men have to learn to be able to fend for themselves. You never know when those pesky dust mites will attack again and send me into a tailspin.

Just a quick note. School starts tomorrow and I am unprepared. No work done and still reading with eyes that are still recovering. Thanks, dust mites. I love you, too.