Purpose


A blog to share about Adrenal insufficiency, Addison's Disease, Aspergers Syndrome, Autism, Music, Inspiration, Scrapbooking and other elements viewed through the lens of my life. I'm hoping that others who are traveling this journey may find some commonality, and maybe some information and inspiration.

Wednesday, November 30, 2011

Recording a Life Story as it happens




The photo is my current iBook shelf. I have many more iBooks, not currently loaded on my iPad. A bit of my mundane life. Which is very different than how I read and acquired books until just recently.

This is an interesting post, especially for those of us who document our everyday, mundane lives.




- Posted using BlogPress from my iPad

Monday, November 28, 2011

Thankful Thoughts No. 5














How was your Thanksgiving weekend? Mine was exhausting! But the new roasting pan from Costco worked great, we all liked the gluten free rice stuffing, and the Especially Good Sweet Potatoes were just that - delish.

Today I'm thankful for such a rich life. Which isn't at all the same as saying we're rich. Unless you are comparing use with the vast majority of people in the world. Then, yes, we are rich. Even though we're feeling the economic crunch pretty strongly right now. When one takes the larger view, we are so rich.

Thanksgiving time is a good time to think about how our predecessors lived and how far we've come. I'm only the second generation in my family to be born in America. And when my grandparents were homesteading, they travelled by horse and buggy or train. They had no electricity in the house, and no running water. The well was a quarter mile away. Just getting water was an effort, especially in the winter. This was on the Great Plains, with below zero weather and blizzard conditions a normal occurrence.

Contrast that to my life now. I live in a balmy state, in a four bedroom house someone else built for us, with all the conveniences. Hot water or cold, whenever I want, with the minor inconvenience of sometimes running out of the hot water if we've tried to wash towels, run the dishwasher, and take a shower at the same time.

I read an article talking about how discontented Americans are. I think it's partly because we tend to have such a narrow focus, and we have a culture of "you deserve more." And I'm not talking here about people who need a helping hand due to loss of jobs and homes. It's those who have so much already who seem to feel like enough is never enough.

Here's a great little video about how gratefulness can change your life.

Wednesday, November 23, 2011

Thankful Thought No. 4


I'm so thankful for this little girl in our lives. I don't take any day with her for granted.

It was touch and go from the beginning. Due to problems with the pregnancy, the doctors told my daughter that this baby had a 50/50 chance of making it to term. They took their chances.

There were concerns right at birth - they checked her for kidney problems due to certain physical anomalies, but her kidneys seemed fine.

Then, she was losing too much weight right after birth. She was very sleepy. My daughter had to wake her up every two hours to try to get her to nurse so she would gain weight. Around the clock. It worked, she started to grow.

As she grew, we started noticing other problems. A little slow developing, staying very small (this in a family of large, delightfully fat babies). We called her "Peanut".

She was very late climbing stairs, and refused to come back down. Then we noticed her eyes turned in a bit. Since her mom had strabismus as a baby, and it was successfully corrected with surgery, we figured like mother like daughter. A visit to the ophthalmologist proved otherwise. She has a very small optic nerve and partial blindness. We're still not sure exactly how much of her visual field is missing, but we know the lower part of it is because she would always fall when there was even a slight level change, especially in new territory. She has optic nerve hypoplasia, which means her optic nerve didn't completely develop. This is often associated with other mid-line brain abnormalities, so she has to have tests for hormone levels done about every six months. Lots and lots of needle sticks. And yet a casual observer would not know she has vision problems, and we are very thankful that her blindness isn't more severe. Many children with this are totally blind.

Then she caught a virus that the other children had, but she didn't get well. She kept getting more and more lethargic. Back to the doctor, who was inclined to say it was just the flu. Thankfully there was a nurse at hand who also worked for a geneticist. She suggested some tests, and that was when we found that she is really low in carnitine.

Carnitine is a substance that our cells require in the production of energy. When it is low, the muscles, including the heart muscle, have no fuel to run on. We still don't know for sure the exact cause in her case. She has done so well on supplemental carnitine, and does so poorly without it that they didn't want to do the testing required to find out since it would necessitate taking her off the carnitine for a period of time.

Her language development has been very very slow, although she is obviously an intelligent child. She is in a special needs classroom, and she has really grown and developed under their care. Her speech is still limited though, but she is communicating so much better than before.

She also has autistic-like behavior patterns, though she isn't a classic example of autism. She used to ignore anyone who wasn't in her little circle of known family members. And she never initiated playful interaction. That has all changed as time has gone by, for which I am very thankful. She now will initiate play with her sister - such a joy to see, even if she is often too rough and tumble.

A newly developed test has show than she has DNA deletions in three different places, some of which are known to cause developmental delays. The next step is to test her parents to see where this investigation will lead.

It is a relief to know, on the one hand, that these are genetic issues and no one could have done anything different to effect the outcome. On the other hand, it's forcing a recognition that these problems will be with her for the rest of her life, which is a source of grief.

But oh, that girl can light up my day! She is happy so much of the time, full of enthusiasm and energy. I'm so thankful that she survived to be born, that she is such a tough little girl in some ways, that she continues to grow and learn, and most especially for those wonderful "Hi Grandma"s accompanied by huge hugs and kisses. What a gift she is!

Monday, November 21, 2011

Thankful Thought No. 3


Here's another thing I'm thankful for: Online scrapbook classes! I love taking online classes because it gives me the opportunity to learn from designers I admire, most of whom have a strong background in design as a profession. What an opportunity!

I am not yet done with all my projects, but I'm closing in on the end of Scraphic Design Core with Tiffany Tillman at reneepearson.com. This is one of many online classes I've taken and loved. I've taken a scrapbook design class at Big Picture Classes with Cathy Zielske, which was amazing. Tiffany's class added to the knowledge I was already putting into practice. Our scrapbooking styles differ, but the principles can help you make better pages no matter what your scrapping style.

I'm still working on the final project for Scraphic Design Core - well, truth be told, I haven't started it yet, but hopefully it will get underway in the next few days. Since the process begins with inspiration, and my inspiration is usually photos first, I need to spend some time with my photo library finding the right pictures for the final project. 

My scrap process has definitely been influenced by Tiffany's lessons. I pretty sure I'm ending the class with a stronger sense of design that when I began it. The next step is incorporating what I've learned into my scrapping process. My design checklist will be by my side until it becomes a habit. 

Another designer I've taken classes with and learned a lot from is Ali Edwards. I just recently worked on a travel album based on her Scrapbook on the Road class. It was fun to create, and great to have along on my trip. I finished up when I got home by printing a few favorite photos to include in the album. I've posted a few of the pages on Flickr. For some reason, the photos are all out of order on this link although they appear correctly in other views. The rings I used are too large, they'll get exchanged for a slightly smaller size soon. I didn't publish a lot of the photo pages because they are of family members and I respect their privacy. But this will give you a taste of it.

Thankful Thought No. 2

P365 by PattiP88
P365, a photo by PattiP88 on Flickr.
I am so thankful for my garden, and for living in Hawaii where I can enjoy beautiful blooms all year round.

Thursday, November 17, 2011

Thankful Thoughts

I'm very late getting started on this project but it's time to start.

Thankful Thought No. 1 - Travel.

I recently took an amazing trip, and I took this photo while flying between Los Angeles and Dallas. There are several things that amaze me about this. One is just the view of America that one sees from airplane windows. It is so varied. This photo documents the abrupt change from desert wasteland to irrigated farmland, somewhere in the Southwest.

The other thing that amazes me about travel is just how good we have it (in spite of all the hassles with Homeland Security measures). My grandparents travelled to America from Norway via ship, then they traveled across the country to Montana on the train. It took many days of travel to get where they were going. The trip from Norway to New York was over 3,500 miles. In contrast, I traveled about 3,800 miles in just over twelve hours. For that I am very thankful!

Wednesday, November 9, 2011

2012 Memory Logbook

Purchase your 2012 Memory Logbook products NOW for the lowest prices of this holiday season!


The 2012 Memory Logbook from Log Your Memory is now available for ordering. I'm excited by the changes in the format. For one thing, it is now available in looseleaf format, so you can use it in your own binder. Since I've got a binder I'm used to using for this purpose, I'm glad to have the looseleaf option. I ordered the 8.5 x 5.5 size like I did last year. I'm very glad not to have to print this out. But if you want to save money, you can print the pages yourself.

Another change this year is that the 2012 Weekly Challenges are a separate purchase, which gives the customer more flexibility.

The Logbook is a great gift for a scrapbooking friend, and don't forget to buy one for yourself :)

Just click on the graphic above to order, but hurry if you want the Early Bird discount!