Updates, Updates Part 5

Two for one.

I don't often post two times in one day. Even, though I may often have more things to say, I try to keep the posts down to one a day. And, they have gotten shorter and more to the point (I hope!).

But, today, I had two things to say. One was announced in the post below this one. The other is to finally finish a series of posts regarding my family. This post makes Updates, Updates, Part 5. I finally have to talk about myself.

Sometimes, this is very easy. I feel I could talk about myself all day. Not sure you want to hear it, but some days I am so in touch with who and what I am, I could go on and on. Other days, I question my reasons for being, my motives, my ever changing and unenlightening emotions, etc. Basically, some days, I don't know who the heck I am or what the heck is going on.

But in Updates, Updates, I usually focus on the reason each member is a part of this Unique Family. When it comes to me, I am a member, because, well, I was the one who heard the phrase in my head, that fateful morning, when I didn't think I could go on anymore. I heard "You have a Unique Family." And, it was I who had to place myself in the Unique Family first and then bring the rest.

Without sounding too psychological, I had to see myself as part of something unique and wonderful, even when, on the surface, it didn't look that way.

I certainly didn't feel like I wanted to be included. Certainly didn't feel like I would write about it, either. And yet, both of those things happened. So, I will try to write about myself and what I face every day. I have struggled with some limitations from early on and others surfaced as I got older.

For all I can find out, I was born visually and partially hearing impaired.

I didn't find out until I was 37 that I have degenerative myopia. That is a fancy way of saying my vision never stops changing. I usually have to change my glasses every year or so. It is at the point now that I have to use assistive technology to get things done - CCTV, large 22” monitor on my computer, large text and icons, text readers and speech to text synthesizers, etc. There are other items I would like to purchase, like an Optelec Farview. This would help me outside of the house. I still have a driver's license, but I don't drive much, and never on the highway. My life and the lives of others are too precious to me.

I have also learned that my hearing loss is not just about being partially deaf. I have permanent nerve damage in my inner ear, which has caused vertigo to be a permanent part of my life. I had a few episodes of it as a child, but after 2006, it decided to show up every day. There is therapy, and I may try it, but for now, three different meds keep the world from shimmying, and the nausea and migraines at bay.

I have mobility impairments (herniated discs - 5 in all) as well, but most days this is hardly noticeable. After being practically bed-bound for a year, I had back surgery in 2005, that returned me to the land of the walking, but, no hikes, long walks or drives for me. I can drive 20 minutes one way, but the return trip, I will pay for it. Anything longer, someone else is doing it, and even then, I will stiffly get out of the car.

I have an allergy to dust mites that I didn't know about until last year. Due to this allergy being untreated all of my life; I also suffer with multiple chemical sensitivities and a weakened immune system. I am getting stronger (I made it through this whole winter without one cold, flu-like episode or bout of sinusitis! Not even a runny nose!), but I still can have violent reactions to fragrances, everyday cleaning supplies and chemicals, and dust that can halt my activities in a second. I don't need an epipen, but I will always have Benadryl, Zyrtec or Allergan handy.

I continue to battle diabetes through diet (vegetarian/vegan) and herbal supplements, but have had to start taking meds for hypertension.

Since I have been treating my allergy and the inner ear problem, I have not suffered much with bruxism, TMJ or trigeminal neuralgia (TN).

I have survived and overcome Bell’s Palsy, RSD/CRPS, optic neuritis, and a 40% disability in my lower left leg (due to a fractured tibia that went undiagnosed for 3 weeks). I have had seizures, multiple faints and chronic fatigue syndrome-like symptoms since my late 20s.

To look at me, you wouldn’t be able to tell all of that. In fact, if I go back to wearing contact lenses, you won’t even be able to tell I have a vision issue. I am truly a person with invisible disabilities.

If you read the post on "Learning to Be Less Than Perfect," you know that during my childhood, most of this went untreated. As an adult, I didn't really acknowledge my weak state of health even as I was staring disability in the face. I continued to work and ignore my health needs, trying to be stoic like my parents. Even after receiving disability, I continued to try to work; at home and in temp jobs. I only stopped in 2006, after the bout with Bell's Palsy left me shaken, broken and scared. I had to pay attention or no one knew what would happen next.

I thank God, today, for that life-altering experience. I would not be writing today, starting an online business, making the friends I have, if I had not faced one of the most difficult periods of my life.

Here I go again, making a really long post. Sorry.

So, now you know a little about the final member of the Unique Family. The one God chose to bring these stories to you. Perhaps this is one of my purposes in life. I hope it makes a difference in yours.


P.S. While looking for a pic for this post, I came across this quote from The Jungle of Life:

It is not the mountain we conquer but ourselves. - Edmund Hillary

Momentous Decision

After this post, I am going to begin another blog.

There it is. That's the big decision. Kind of a let-down, maybe? Well, I took all night to decide this.

Last night, after thinking long and hard about it, I decided to start a blog related to my business. It will be self-hosted through my hubby's hosting company and it will chronicle An Extra Hand Serivces' rebirth; its twists and turns, stops and starts. I also want to have another platform for announcements, giveaways, business and financial tips and motivational, encouraging lines for businesses, big or small.

What about this blog, you ask? It is going to remain exactly what it started out to be: the events in the life of the Unique Family. I don't want to water down the message of how we live with chronic illnesses and disabilities with "Hey, click here for this or that!"

I know, you are thinking, most people wouldn't separate out their business from their personal. Well, for me, this blog has always been about making friends, sharing stories, baring our souls, laughing at pictures and comments of encouragement. And, I want to keep it that way. It is dear and precious to me. It has helped me get to the place that I can even think about working again on a business idea.

The new blog will be about business; running one, setting up one, getting customers, hitting roadblocks and overcoming them. I hope to have guest bloggers, who will give tips and inspiration. I will upload videos (not of me!-if you listened to my audioblog, you know I have no stage presence!) and have more of a community spirit to it. Of course, friends will be there, too, because many of you have businesses, so there will be an overlap.

Think of the new blog as the home office (where home may intrude a little!) and this blog as the living room, where it is all about the home front.

I hope everyone here will also come into the office every once in a while. You are always welcome!

Learning to Be Less Than Perfect

I received my final grades today. One A and one A-.

Now, why do I look at that A- and wish it were an A? I mean, I came so close. I was at 94.73, but my final project fell short of the instructor's rubric, so I didn't make it.

I admit it is my mother talking. I had a seriously Type-A Mom, back before they had terms like that. If you brought home a 95, she'd say "why couldn't it be a 96 or a 97?" I once received a final grade of 99 in a biology class. A final grade! And, yes, she asked me (and the teacher, mind you!) why didn't I get an 100? No one had ever got a 99, and she kept pushing for that perfect grade. The pressure used to be ridiculous. It didn't help that my older brother graduated high school at 15 1/2. Being the middle child, I was expected to be as good, if not better.

I wasn't.

I was the artsy, dreamy, talk to myself under the kitchen table-type kid. I sat in mimosa trees, smelling the blossoms and deciphered shapes in the clouds. I started out badly in school, nearly flunking 3rd grade.

Was I too rambunctious (old term for ADHD)or didn't turn in my work? Nope. I just talked too much! LOL!! I laugh at that now. I just couldn't stop getting involved with everyone in the class and finding out how they were doing. Well, my mother had a real good talking to me (in those days, that meant, spanking) and I realized that I wasn't going to master anything talking all the time. So, I buckled down. Real hard.

And, went on to be salutatorian of my middle school and graduate in the top 2% of my high school class. And, still, she kept pushing for more.

Little did she know that physically, I was pushing myself to utter sickness and exhaustion. I never missed a day, until one day, in utter pain, I just walked out the the school. Top grades and all, I needed to rest.

College proved to be disastrous. My eyes couldn't take it and my body seemed to be constantly racked with some virus or flu. To my darling mother's utter consternation, I never finished a degree. Five colleges and no degree. She was mortified. I really think I was relieved.

Now, I am the parent and I have two lovely boys, who are far from stellar in grades. My older Aspie son is average, not your savant Aspie in any way. My youngest son probably has permanent memory damage and has a speech/language deficit. I learned early on that I could not have the same attitude of my mother. I had to cut them some slack.

And, today, I realized that I have to cut myself some slack, too. I deserve to be okay with less than perfect. I deserve to turn the record player of parental disapproval off and enjoy my return to school.

On Twitter today, @steveKrull wrote this:

Some days I face #autism head on. Some days I hide from it and I don't know exactly why. Answers?

I answered with this:


But isn't that like life? Look at the hiding days as reflective. No one takes life on head on everyday. Even God rested. #autism

Boy, I am sure my mother is rolling over in the grave. But, when I look back on that tweet, I realize I have learned to take it easy. Perfect grades don't make perfect lives. And, all of us have something to offer, even if it is less than perfect. Some days we are gung-ho, and other days, we need to hide.

Hmmm, haven't I come a long way.

Thanks to autism and dysautonomia, and learning to love my dreamy, nurturing, artsy self.

Birthdays and All Things Good Today

In the midst of every storm is a little light.

Today, is my young son's birthday and I invited several friends over. He never get to see most of them since becoming homebound, so having guests over always puts a smile on his face. He walked by just now and said, "It's not that bad, Mom. It's almost as good as going out." Bless his growing heart!

With the little I scraped together, I bought a huge picture cake from Giant and three Ultimate Meat Pizzas from Walmart. The first pizza was inhaled between Kirby, Kingdom Hearts and Supersmash Brothers Brawl. I got two slices from the second one(I still eat meat, even though most of my regular meals are veggie). Now, there are calls for the cake. I will have to make this quick, so I can get back to lighting candles.

Just to hear the sound of laughter and good innocent young teen ribbing felt good. The house wasn't too cold today and everyone pitched in and cleaned three rooms in half an hour.

Sometimes, good things happen in the midst of it all. Thank goodness for those times. I use them like finger holds, clinging to each meager one as I continue to climb.

Very 1st Audioblog - Facing Self-Discovery and Sneaking Out the Back Door

Have you ever had something difficult and you couldn't even write it down?

I am going through some difficult times and I ended up using an audioblog for this post rather than write it. I wrote somewhere, that writing things down makes them permanent. So does blogging, audio or not, but it was just easier.

The Unique Family just got a little more unique. Unique, hard to handle and difficult to talk about.

Listen if you want. If I feel comfortable with this, I will make more.

Take care and hold on, regardless of your situation.

Wii Fit and Dysautonomia

Okay, I have been tooting the business horn for a little while here. It is important in the Unique Family, due to our current precarious financial situation. But today, I am going to talk about the young son. If you have read Updates, Updates Part 2, you know my youngest son has a rare disorder of the autonomic nervous system. In simple words, it doesn't work properly. My explanation for this is usually, think about whatever you don't think about in your body; heart rate, blood pressure, etc. Okay, now imagine if all those things didn't work the way they are supposed to. That's Dysautonomia. If you want more information, click on the title of this blogpost and you will go to the only support group for children with this disorder.

Well, my son's birthday was Thursday and he is now 13. I have been commanded to not refer to him as a "boy" anymore, but a young man. I will try to comply without giggling. I can still remember chasing a soaking wet naked, shrieking body down a hallway!

Back to the point I was trying to make. I took a little bit of money and bought a Wii Fit. Yes, we have the Wii. It actually was bought six months before Christmas 2008 and stored away for the end of the year. Now, we have the Wii Fit.

Boy, was he excited. Everyone in the house did their balance testing (don't ask me about mine. That board and I are not on speaking terms right now.) and then he went on to try everything: step aerobics, yoga, walking in place. Whatever that board came with, he tried it before the night was over.

Enter the next day.

First, he couldn't get out of bed. Then he spent the entire morning moaning, groaning about his back, sides and legs. Sounds no different than an out of shape person, right?

Except that along with the stiffness came the crushing fatigue. He was not able to do anything past open a food packet for the dog. When we went out on an errand, he sat in his wheelchair the whole time and only lasted one store.

Such is the life of someone with dysautonomia. While I am grateful he can even stand up without fainting now, and he managed to do two sessions on the board, it will be days before he is back up to anywhere near normal. This was supposed to be a alternative to the mind-numbing physical therapy sessions we were trying for the last two months. Sessions that were boring, time-consuming (have to drive to the hospital) and produced no results.

And, doubling his main medication has not seemed to make any difference. *Sigh*

At least, the neighbors will have something to do when they come over.

New Service For An Extra Hand Services

Two or three blogposts ago, I announced that I would be resurrecting my old business, An Extra Hand Services. Poor thing, she doesn't even have a website yet! Not even a email. For now, the little company that could is just trying to breathe its first breath.

But, as God would have it, yes, I am mentioning God, good things have already begun to happen the very day after that post. You may call it the Law of Attraction or a superior power, it doesn't matter to me. What matters is the real changes and miracles that happened within a week.

Within this one week, people have just been walking up to me and blessing me with money. I don't know if they know our plight, but they come up with some silly reason, like, "oh, thank you for driving my daughter to school the other day, Here's $20.00."

Now, you and I both know a car ride for less than 3 minutes would never cost that, but she pressed it into my hand and walked away.

Here's another one. My brother, who borrowed some money from us last year and never paid, sent us a check. For the whole thing. $1500.

I know I don't have to put numbers out there, but numbers speak volumes. I want you to know this is real.

And, just yesterday, I discovered a service that I would love to offer through my newly re-birthed company. It is called Send Out Cards. This, to me, is just the kind of thing I like. Something that can make a big difference with just a little time.

Sent Out Cards allows you to pick a "real" card from over 10,000 cards online, personalize it, even upload a picture and then somewhere in Utah, they print a real card with your words and send it to whoever you want.

A real card, everyone. Not an e-card with an expiration date on it. A real card stock greeting card with a REAL stamp on the envelope. Of course, I am knocking my head and going, "Why didn't I think of that?"

In these days of Twitterific tweets, e-chain mail and suspicious links, wouldn't it be nice to get a real card in the mail? I sure think so.

I think it is such a great idea that I am offering to send a free card to 10 people who email me with their addresses. Or better yet, I will send it to someone for you. And then I will blog about the results and your comments.

Send your addresses to: agapepantry@yahoo.com (this is a 2nd email address I have. Must tell you the idea behind that one day!) The first ten full mailing addresses I receive, I will send card to it. It could be to you or to someone you know needs to get a card right now. Tell me what kind of card you want sent. And, what you want it to say on your behalf. I just want you to see how easy this is. And, if I could do it, you could do it, right from your computer.

Also, send me your birthdays. Once I get them into their easy-to-navigate contact manager, I will never forget them again (I usually forget EVERY year!)

If there are any businesses out there that would like more information, please send an email to that address as well. I am setting up commercial accounts and am happy to be your back office and help you reach out to your customers, clients, prospects, friends and family. In these recessionary times, it will be appreciated so much more. A real card with real sentiment. There is even a way to send in your own handwriting so that you can "type" in your own handwriting.

An Extra Hand Services is proud to be a independent distributor of Send Out Cards.

View the video below to see a heartwarming true story related to Send Out Cards:

Send Out Cards Intro DVD

And, don't forget those addresses, and your names!