Hello Friends! Keeping in mind that October is Spina Bifida Awareness month, we have a wonderful article written by Liza, an adult with Spina Bifida. Liza has been generous enough to share her story with us. I sincerely thank her for using her personal story to educate us about Spina Bifida and what life with it can be like. Here is Liza's story:
My name is Liza (with a Z, not Lisa with an S). I am 29 years old and the single mother of a toddler. I was born with a Birth Defect called Spina Bifida. Spina Bifida is a type of “neural tube” (spine) defect where the bones of the spine do not fully form at some point along the back, leaving the spinal cord unprotected in that spot. This can be anything from a larger than normal space between 2 vertebrae, to the spinal cord being exposed to the outside of the body. The neural tube forms at about 26 days after conception, so by the time a woman finds out she is pregnant, the neural tube has most likely already formed. There are 3 main types of Spina Bifida: Occulta, Meningocele (“men-in-joe-seal”), and Myelomeningocele (“my-low-men-in-joe-seal”).
According to the CDC, Each year, about 1,500 babies are born with spina bifida (sadly, many are aborted because of a lack of understanding as to how exactly Spina Bifida affects people.). Spina Bifida is the most common birth defect in the United States, but for some reason most people have never heard of it, unless/until it affects themselves or a family member or close friend. No one knows exactly what causes Spina Bifida. For certain cases it seems to be genetic. And doctors and scientists believe it could also be from not getting enough folic acid during the time the neural tube is developing.
I have the most severe of Spina Bifida, Myelomeningocele. This means that my spinal cord was actually protruding from my back when I was born. Spina Bifida usually causes nerve damage below the spot of the defect. For me specifically that means I cannot feel anything besides pressure on the bottoms of my feet, backs of my legs, and gluteus maximus. My feet are always cold when it is cold outside. I have to use a catheter to urinate, and do not have regular bowel movements.
My parents had no idea I had Spina Bifida before I was born (now it is common to know during pregnancy, because of ultrasounds and other tests). After I was born I was flown from Wyoming to Denver Colorado, where I had surgery to close my back. I have had about 11 more surgeries on my bladder, feet and legs, as well as 2 more on my back.
My childhood was filled with hospitals, IV’s, MRI’s, CT/Cat scans, X-rays, surgeries, recovering from surgeries, heavy duty pain killers, ER trips and doctor’s appointments. As well as being teased for walking with a limp (kids are ruthless). This was all normal for me, but my childhood was also filled with “normal” kid stuff.
Every year I would go to the closest major city to an “MM (short for myelomeningocele) Clinic”. It was an all-day thing where I would see lots of specialists: Neurologist, Neurosurgeons, Nutritionists, Urologists, Internal specialists, (I’m sure I’m forgetting a few.)
It wasn’t until about high school that I realized this was not “normal” for everyone. But I never really thought about it before then, because it was “normal” for me.
I worked full time after high school doing mostly fast food jobs. It was really difficult because all the standing and moving caused lots of pain, which registered once I was home and stopped moving. I wasn’t really able to do anything besides work because I was in too much pain. But I just sucked it up and did it, because that is what adults did.
College was difficult for me, mostly because of the attendance requirement. With my bowel and bladder issues, showing up every day, or for every class was not an option. Eventually I would get so far behind that I couldn’t keep up.
I got pregnant with my son when I was 27. It was a huge shock because I vividly remember doctors telling me that I would not be able to get pregnant without medical assistance. (The one time that I listen to what a doctor says is possible…). After the shock of being pregnant wore off, I wondered if carrying and delivering a baby was even going to be possible for me. I tried doing research on line, but couldn’t find anything about being pregnant and having Spina Bifida. I saw a perinatal specialist when I was pregnant that assured me that everything should be fine, and since I could touch my toes, I should even be able to have a natural delivery. (I never figured out what touching my toes had to do with delivering a baby.). My mom worried the entire time I was pregnant that my son would have Spina Bifida (It is not usually genetic, but we believe in my case that it is genetic). My thought on it was “Who better to have a child with Spina Bifida, than someone who has had it for 27 years, and knows everything involved??” I was more interested in the fact that my feet were warm all winter! (Thank you increased blood flow! Lol.) My son was born perfectly healthy, and I had a normal delivery after 22.5 hours of labor. This was one of many instances that I was glad to have nerve damage. While my labor was definitely uncomfortable, it didn’t actually hurt that much.
I found out when my son was about 6 months old that I had a tethered spinal cord, a condition that is fairly common for people with Spina Bifida.
The spinal cord should float freely in spinal fluid, but with tethered cord the spine attaches to scar tissue on the back. This pulls the spinal cord tight and can cause (further) nerve damage.
I have been looking for a neurosurgeon to release my spinal cord for almost a year now, and so far have not found one that is capable of doing the surgery I need, without causing more damage, and that will take my insurance. Finding the specialists that people with Spina Bifida need to see is so much more difficult as an adult than it is to find the same specialists for kids with Spina Bifida.
Having a tethered spinal cord has caused further nerve damage and made my legs weaker than they were before, so I can’t stand as long as I was able to before. That means that I won’t be able to work anymore, at least until/unless I get training in a job where I can work from home, so that I can stand/sit/lay down when I need to. And even though Spina Bifida is on Social Security’s list of qualifying disabilities, I have been denied for Disability about 3 times, and am in the process of appealing those decisions.
Having Spina Bifida is difficult, but it has taught me many valuable lessons that I would never have learned otherwise. I learned that staying positive, no matter how bad it looks, has a huge impact on out-come. I learned patience (from sitting around waiting for Doctors or tests). I learned to ignore negative people. I learned not to judge people, and to look at things from other points of view besides my own.
Friends after reading Liza's story I feel so much awe and respect for people who just overcome. I have relatively little to complain about in my life compared with some of the people we've met this month, yet I still manage to do plenty of complaining! Please show Liza some love for her post in the form of comments below! Thanks so much Liza for your honesty, your humanity and your courage. Until next time, Live and love well my friends! ~Teresa
Thursday, October 20, 2011
Saturday, October 15, 2011
Featured Artist Bernoullis Attic
Hello Friends! I'd like to introduce a new artist named Susan who owns Bernoullis Attic, a really great shop on Handmade Artists Shop!
Teresa: Bernoullis Attic is a really novel store on Handmade Artists Shop. How do you describe what your arts are and your store?
Teresa: And the usual, one funny, unusual or interesting thing about yourself that you don\'t mind sharing! ( I\'ve gotten some pretty good ones when I ask this!)
Teresa: Bernoullis Attic is a really novel store on Handmade Artists Shop. How do you describe what your arts are and your store?
The logo for Bernoulli’s Attic carries the saying “Handmade Oddments and Whimsies” and that is really what the shop is about. There’s a little bit of everything in the Attic, from crochet to handmade soaps, but the bulk of the offerings are crocheted items. Many (most, actually) of my items are my own patterns and designs. You can find everything from bath accessories to scarves to stuffed animals. If you’ve got something in mind, just let me know and we can probably figure out how to make it.
I have just opened a second shop, called Paper Imaginations by Bernoulli’s Attic to handle greeting cards, gift tags and anything else you can make from paper and imagination. This was mostly a housekeeping decision…the cards were taking over the original Bernoulli’s Attic shop!
Teresa: You have more than one art that you are quite talented at. Do you have a favorite and if so what makes it your favorite?If you’ve seen my shops, you’ll have noticed that I work in many different craft areas. Crochet, scrapbooking/card making and jewelry are the predominate ones, but I love to make soap, wreaths, and do decorative painting as well. I love to crochet because after about 40 years of practice, there’s not much that I can’t make and I find it to be relaxing, almost meditative. Card making is fast becoming my favorite hobby, however. I can’t draw very well, so it lets me get creative designs out into the world using paper, ribbon, embellishments and imagination. Right now, I’ve gotten into using a paper folding technique called “Teabag Folding,” which makes 3 dimensional shapes that I use on cards and such.
Teresa: How long have you been an artist and when did you decide to go public with it and into selling it?I have always had a creative side, but never pursued it steadily until 2010. I was taught to crochet as a child by my grandmother and a family friend, but never really thought of it as an “art”. It was more something to do to keep busy (and keep the family in potholders). I spent 20+ years in the engineering world, but kept up with crocheting and other crafts as things caught my interest and time permitted. While I always thought it would be fun and rewarding to be able to craft full time, my practical side expressed concern over #1: what to do with all these creations and #2: how to pay for my obsessions. (I guess you can take the girl out of business, but…). I decided to form a company, Bernoulli’s Attic, to market my items. I began full time crafting in 2010 and Bernoulli’s Attic began on-line selling in January of 2011. My second on-line shop Paper Imaginations by Bernoulli’s Attic just opened earlier this month.
Teresa: What advice do you give to anyone interested in your particular arts and selling their art in general?I have two piece of advice for anyone who wants to engage in the handmade goods business. First, from a business perspective: Do a reality check. If you’re just starting out and plan on feeding a family of 5 with the proceeds from selling your handmade feather dusters online, do your research. It may work, but you need to know you have a market (and a fall back plan).
The second piece of advice is actually the most important. It’s more from a philosophical viewpoint: Don’t take yourself too seriously. Yes, it’s a business and it’s your creativity being put out there. It’s also a world full of people with differing ideas and opinions, and not everyone will see things the way you do. I put a high value on serenity and peace of mind, which are things that crafting gives me. Some may think I am wasting time and other talents. Some may not see any use for my products and believe “store bought” is better. Remember, that’s their opinion. I do not defend my pursuits or my creations. I just know that what I do, I do for me and it makes me happy. Sales and approval are nice (and to a degree, necessary), but that’s not what makes me wake up in the morning ready to try out a new idea. That’s love for what I do.
Teresa: What are your hopes for Bernoullis Attic?I’d like for Bernoulli’s Attic, along with Paper Imaginations by Bernoulli’s Attic, to become an on-line version of a little brick-and-mortar store that people feel comfortable just popping by to say “hi”, share the latest buzz and see what’s new. It’s not just about the on-line selling, but about the on-line presence. Bernoulli’s Attic has a Facebook page and Twitter account, where I have made contacts and friends that I look forward to hearing from each day. We celebrate the ups and downs of our businesses and our lives, and offer support and encouragement. I love to hear from folks who have questions about my products or are looking for something special. It really does brighten my day to know someone is looking. Everyone should feel free to drop by and say hi via Facebook (www.Facebook.com/
People usually wonder about the name Bernoulli’s Attic, and I’ll admit it’s a bit strange. First, I am a cat person. Second, I am an engineer. Third, I’m a little weird. Having said that, meet Bernoulli, the namesake and feline patron saint of Bernoulli's Attic.
Yes, the company is named after my cat (who was named after the Swiss physicist, Daniel Bernoulli, who did all kinds of cool engineering stuff). Though she has gone on to that Great Litterbox in the Sky, she lives on in spirit (and the occasional dust bunny hairball) around here. She was a great supervisor, always checking out the newest products and giving her opinion. She could purr louder than any cat I've known and did a great impression of an aggravated Ewok when annoyed.
But I don’t lack for supervision these days. Currently Albert Einstein and Madame Curie are the reigning felines here at Bernoulli's Attic. Madam Curie, or the Divine Miss M as she likes to be called, is the newest addition to the Bernoulli's Attic family. When she's not polishing her tiara, she is a very paws on helper (I'm still looking for a crochet flower she took off with). Albie Einstein just hangs around and offers moral support and the occasional kitty ankle rub.
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For Unique & Eclectic Handmade Oddments & Whimsies check out:
Thursday, October 13, 2011
Letter to a Mother
Hello all! Bearing in mind that October is Spina Bifida Awareness Month, I am doing something different today. I'm posting a letter written to a mother by an adult Spina Bifida hero. Her name is Misty Boyd, her blog is at www.mistyboyd.com and here is her letter to her wonderful mother as an adult looking back:
Mom,
Thank you for giving me life when “they” said I’d be better off dead. Thank you for fighting on my behalf when I was too little and weak. Thank you for loving me even though you were scared. Thank you for becoming a nurse in our home long before you were ever a nurse at a hospital. I know that must have been intimidating. Thank you for learning what all those tubes were for, and where they went, and how they helped me. Thank you for countless doctor visits and E.R. visits, no matter what time I needed to go. Thank you for walking up and down the halls of the hospital with me while people gawked. Thank you for your paranoia about every little thing that didn’t seem right. I know sometimes you thought you looked nuts, but I’m sure it kept me alive more than once. Thank you for yelling at doctors when they said, “She’s fine,” when you knew me well enough to know I wasn’t. Thank you for the ugly stares you gave back to people when I was doing my best to learn to walk. Thank you for being patient when other kids my age were running circles around me. I needed more time. Thank you for remembering countless medications, and cath schedules, and putting my AFO’s on for me, and dressing me when it took me a little longer to learn. Thank you for yelling at me when I wouldn’t take care of myself as a teenager (not that it worked…I’m stubborn). Thank you for making me stubborn. I needed that attitude. I don’t know how I would have made it without my pain in the rear attitude. Thank you for pushing me to do everything you knew I could do, and I knew I couldn’t. Turns out, you’re pretty smart. Thank you for letting me do things you were scared of. I know I terrified you sometimes. I had to know if I could ride my bike down that hill at supersonic speed. I could. Fun! Thank you for making me know that I was worthy of love. I never let a boy tell me anything different. There were a lot of worms, but I dropped them all for something I knew I deserved. Thank you for cheering at my graduation. If my doctors had it their way, that day wouldn’t have come, but you believed. Thank you for spending countless hours planning that crazy wedding, yet another thing that wasn’t supposed to happen. And thank you for forks! LOL! Only my mother will get that one! Basically, thank you for stepping into an unfamiliar, scary world, that you didn’t sign up for. I appreciate it, and I think you did a great job! I turned out okay!
Love,
Your SB kid
Misty told me that her parents were told to just let her die when she was born with Spina Bifida. Thankfully they courageously did what needed to be done and gave the world the gift of Misty. See her blog. See the children. I sincerely believe that a part of living well is helping others and learning about their struggles and their triumphs! Until next time friends, live and love well and please show some support in the form of comments here or on Mistys blog.
Mom,
Thank you for giving me life when “they” said I’d be better off dead. Thank you for fighting on my behalf when I was too little and weak. Thank you for loving me even though you were scared. Thank you for becoming a nurse in our home long before you were ever a nurse at a hospital. I know that must have been intimidating. Thank you for learning what all those tubes were for, and where they went, and how they helped me. Thank you for countless doctor visits and E.R. visits, no matter what time I needed to go. Thank you for walking up and down the halls of the hospital with me while people gawked. Thank you for your paranoia about every little thing that didn’t seem right. I know sometimes you thought you looked nuts, but I’m sure it kept me alive more than once. Thank you for yelling at doctors when they said, “She’s fine,” when you knew me well enough to know I wasn’t. Thank you for the ugly stares you gave back to people when I was doing my best to learn to walk. Thank you for being patient when other kids my age were running circles around me. I needed more time. Thank you for remembering countless medications, and cath schedules, and putting my AFO’s on for me, and dressing me when it took me a little longer to learn. Thank you for yelling at me when I wouldn’t take care of myself as a teenager (not that it worked…I’m stubborn). Thank you for making me stubborn. I needed that attitude. I don’t know how I would have made it without my pain in the rear attitude. Thank you for pushing me to do everything you knew I could do, and I knew I couldn’t. Turns out, you’re pretty smart. Thank you for letting me do things you were scared of. I know I terrified you sometimes. I had to know if I could ride my bike down that hill at supersonic speed. I could. Fun! Thank you for making me know that I was worthy of love. I never let a boy tell me anything different. There were a lot of worms, but I dropped them all for something I knew I deserved. Thank you for cheering at my graduation. If my doctors had it their way, that day wouldn’t have come, but you believed. Thank you for spending countless hours planning that crazy wedding, yet another thing that wasn’t supposed to happen. And thank you for forks! LOL! Only my mother will get that one! Basically, thank you for stepping into an unfamiliar, scary world, that you didn’t sign up for. I appreciate it, and I think you did a great job! I turned out okay!
Love,
Your SB kid
Misty told me that her parents were told to just let her die when she was born with Spina Bifida. Thankfully they courageously did what needed to be done and gave the world the gift of Misty. See her blog. See the children. I sincerely believe that a part of living well is helping others and learning about their struggles and their triumphs! Until next time friends, live and love well and please show some support in the form of comments here or on Mistys blog.
Friday, October 7, 2011
AJewell Jewelry
Hello All! Today I'm excited to bring you the talented Jewelry artist, Ajewell. She is sharing with us from her home in Ireland! She's going to tell us about herself and her art and I invite you to stop by her shop and see the lovely gifts and jewelry she has for sale at great prices!
AJewell: Hi Teresa,good to hear from you.
Teresa: Its great to have you here. I'm always honored when artists or other folks want to be featured on my little (but steadily growing) blog! So tell us, how did you get started with your art:
AJewell: Hi Teresa,good to hear from you.
Teresa: Its great to have you here. I'm always honored when artists or other folks want to be featured on my little (but steadily growing) blog! So tell us, how did you get started with your art:
AJewell: OK How i got started making jewellery,quite by accident but a happy one, went into a bead shop and couldn't leave without something, got advice from the shop worker who was there on that happy day. came home with some seed beads, headpins, earwires, and all the findings for a necklace and I was off! I found out how to make pieces from looking at photos on the net and I grew from there.
Teresa: Good for you! So many people allow themselves to be intimidated. Can you tell us about your motivation to create?
AJewell: What inspires me?Now that's a good one, because i feel great when I'm working on a new collection and have gotten in new beads, so it's a matter of where my head is at at that particular time, music playing in the background and just left to my own devices and creativity flows.
Teresa: I am completely with you on that! That's the way I do things. Can you think of what your favorite technique or project is:
AJewell: I love Italian glass beads at the moment but I'll work with any kind of bead I love. I love using the wire for necklaces and finding new ways to match up beads and colours. I plan a piece first by setting it out on the table and seeing how it looks, fixing it as I go until I'm happy with it and then it gets made.
Teresa: Very good technique! Any advice for someone interested in learning jewelry making?
Teresa: Very good technique! Any advice for someone interested in learning jewelry making?
Ajewell: My advice for fellow artists:
follow what you want to do, and work with materials that you love. It's very hard to work with something that means nothing to you.Something unusual.
I never thought I was creative at all, I found this out on that faithful day in the bead shop.
Teresa: Well you clearly misjudged your creative abilities going by the work I've seen of yours! What are your future goals for your art, your business?
Teresa: Well you clearly misjudged your creative abilities going by the work I've seen of yours! What are your future goals for your art, your business?
Ajewell: Well, I now have a stall (what we here in the US would call a stand or table in a marketplace) that I never ever thought of. This time last year I didn't know anything about jewelery and now I live and sleep it. I started making pieces and it grew from there. I found out through hard work and patience that you work with what you love, otherwise there's no point. I'm in a stall at the moment and I've just been moved to a better spot. People love my pieces, I would love to have a small space set up for all my beads and hopefully a small old fashioned shop on one of the cobbled streets in my city centre. Now that would be cool!
Teresa: That sound so awesome! I'd love to see it someday! We wish you all the best and are glad you took the time to tell us your artist story. Thanks so much!
And blog readers and friends, please show some support by posting comments to this story and visiting AJewell at http://handmadeartistsshop.com/shop/Ajewell
Till next time friends, Live and love well and support a handmade artist! ;-) ~Teresa
Teresa: That sound so awesome! I'd love to see it someday! We wish you all the best and are glad you took the time to tell us your artist story. Thanks so much!
And blog readers and friends, please show some support by posting comments to this story and visiting AJewell at http://handmadeartistsshop.com/shop/Ajewell
Till next time friends, Live and love well and support a handmade artist! ;-) ~Teresa
Tuesday, October 4, 2011
Good Deeds:Contagious? I hope so!
I found this story and had to share it
27/09/2011/Jen/Hoffman Estates/USA
There is a grocery store that only takes cash or debit. The lady in front of me didn't know and was going to have to put her milk and bread back because she only had a credit card. I paid for her groceries. It was cheap and no big deal to me. I was surprised how much she thanked me! It should happen more often to people :)
http://www.thegooddeedsorganisation.com
This is the type of thing that this blog is about among other things. Yes, we all have to earn a paycheck one way or another and you'll see links to my jewelry and other artists work on this page. The woman who was the recipient of the good deed seemed quite overwhelmed by the fact that a stranger would pay for her items. I sincerely hope that she went away from that experience with a lighter heart and with a better feeling about the good that can be found in people every day. As for the woman who paid the bill, I've seen people totally get frustrated and once downright angry at a person who had to count change in order to pay for their items. Maybe you don't have the ability to pay for someone else's milk. That's not the point. There were two winners here and I applaud Jen Hoffman for what she did and I am sure she felt fabulous because it's very true that the giver gets the true gift. Give to someone today. Give a smile, give a hug, step a teensy bit out of your comfort zone and let someone go ahead of you in line, pay the toll for the car behind you as well as your own if you are in the position to do so. Give an ear to someone who could use it. I'm sure there are things like this happening every day so I don't presume to be the originator of any of these ideas. But do yourself a favor and help someone in some small or large way today. Until later, live well and take care of one another my friends! ~Teresa
27/09/2011/Jen/Hoffman Estates/USA
There is a grocery store that only takes cash or debit. The lady in front of me didn't know and was going to have to put her milk and bread back because she only had a credit card. I paid for her groceries. It was cheap and no big deal to me. I was surprised how much she thanked me! It should happen more often to people :)
http://www.thegooddeedsorganisation.com
This is the type of thing that this blog is about among other things. Yes, we all have to earn a paycheck one way or another and you'll see links to my jewelry and other artists work on this page. The woman who was the recipient of the good deed seemed quite overwhelmed by the fact that a stranger would pay for her items. I sincerely hope that she went away from that experience with a lighter heart and with a better feeling about the good that can be found in people every day. As for the woman who paid the bill, I've seen people totally get frustrated and once downright angry at a person who had to count change in order to pay for their items. Maybe you don't have the ability to pay for someone else's milk. That's not the point. There were two winners here and I applaud Jen Hoffman for what she did and I am sure she felt fabulous because it's very true that the giver gets the true gift. Give to someone today. Give a smile, give a hug, step a teensy bit out of your comfort zone and let someone go ahead of you in line, pay the toll for the car behind you as well as your own if you are in the position to do so. Give an ear to someone who could use it. I'm sure there are things like this happening every day so I don't presume to be the originator of any of these ideas. But do yourself a favor and help someone in some small or large way today. Until later, live well and take care of one another my friends! ~Teresa
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