Katie VanderKooi Scoliosis Advocate – Spotlight Interview

Posted by Connie on Sunday, August 7th, 2011 at 7:33 pm and is filed under Blogging Community, DisABILITY Advocate, Health Information, Spotlight.
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Katie VanderKoois is a young Scoliosis Advocate, who was diagnosed with Idopathic Scoliosis at the age of six. Now as a college student majoring in Music Education, Katie is a blogger,  and is a member of forums to help inform others about brace treatment and surgeries to treat Scoliosis and offer support.

Idopathic means that there is no known cause and Scoliosis means abnormal curvatures to the spine. Katie has two curves. When she complained to her parents that her back hurt, she had MRI’s and Xrays done which showed one 18 degree curve. At 10 years old, when a checkup revealed that  she had two curves and they progressed to about 23  and 27, her doctor decided to brace . She wore 5 Boston back braces in about a 6 year period. A Boston brace is made of plastic that extends from under the arm pit to just below the hips.

Unfortunately, the braces didn’t help improve the curves, instead they worsened – to 52 degrees and 57 degrees.  Now, she was in the serious range and started to have difficulty breathing and back pain on a daily basis.

So on November 17, 2009, I had two 18 inch titanium rods screwed into my spine with 18 screws. The surgery took about 7 hours, and my surgeon also fixed my flat back syndrome. That’s when your lower back has no inward curve. So he reduced two curves, and gave me another one. While spending about a week at Shriners Children’s Hospital, I had to learn to do almost everything all over again—how to walk, stand up, hold things, sit down– basically how to move. And now I am left with perfect posture and an awesome 18 inch scar, also called “the Big Zipper”.

According to Katie, Scoliosis make your body asymmetrical. This can cause:

  • Your hips and shoulders become uneven
  • Your ribs to twist, making one side stick out
  • One side of your chest may cave in
  • One shoulder blade may protrudes out, which causes that shoulder to roll forward
  • Rib humps, where one side of your back has a hump
  • And other medical problems

Katie’s family has been and still are her main support system. Although she feels that her my parents were very protective, which she didn’t always like, she realizes that they meant the best and is thankful now. She also has her faith:

I am a Christian. I believe that God created this world, that we are sinners, and that because of that sin, we deserve to go to hell when we die. But I also know that God sent His only Son, Jesus Christ, to come to earth, live a perfect life, and die for our sins so that we can be right with God and live with Him forever in heaven someday. And the great news about it all is that Jesus rose from the dead, and I serve a living God! He is the ONLY reason I have gotten through what I have. It has not been easy, but He gives me such hope and joy that only He can give. And knowing that He created me for a reason, including my scoliosis, makes me so thankful for it. He is in control and does only what is best for me. If He has the power to save me from the punishment of my sin, I know He has the power to get me through any temporary trial here on earth.

Now she makes use of the internet for support and to help others. She’s a member of join WEGO Health, Daily Strength, and the National Scoliosis Foundation Forum. The NSFF has been very helpful because the members all have Scoliosis and either have gone through or are going through very similar situations. On her blog, Brace YourSelf, Katie writes about Scoliosis, her own experience with it, including how she is dealing with it emotionally.

Katie VenderKooiKatie is doing well as a college student even with her practicing and playing the piano and clarinet. She doesn’t hurt much, but if she overdoes it, she knows it. She also works at the music library on campus and is thankful that she is able to shelve books and sit at her desk. Heavy lifting is not allowed and working outside can cause her pain.  Even if she isn’t hurting, I she must be careful to avoid the the rods in her back from breaking. She cannot bend her back, so things we take for granted like putting on nylons, painting my toenails, etc. are difficult.

The chairs in hair salons and the seats on airplanes cause her problems because her back doesn’t fit into them, so she is often sore after getting a haircut and taking a flight.  But, Katie’s positive outlook allows her to look at what she is able to do and focus on that. She’s also learned to make adjustments for not being able to bend her back.  And meeting new people who have been affected by Scoliosis has made her life more positive. And she’s never given up on playing volleyball, even when it became difficult to breathe. Almost 2 years post-op and she’s back as an outside hitter again! It’s definitely different,  and a little harder because of her restricted movement, but she’s having fun!

Scoliosis hasn’t stopped Katie from making plans for her future.  She’d like to be a school music teacher (general music teacher, band/choir director, etc.), have a piano studio, and teach woodwind instrumental lessons and  become a volleyball coach. She wants to give back to the Ronald McDonald House, where her parents stayed during her surgeries (at no charge) through charity events, such as a concert and a volleyball tournament.

Katie’s beautiful video gives others with Scoliosis strength to get through the tough times:

Kaite VanderKooi is an advocate for people with scoliosis. She’s worn back braces for almost 6 years and went through spinal fusion surgery at the young age of 17. Her knowledge, positive outlook and willingness to help others is a gift to the Scoliosis community.

This is an ongoing effort to spotlight people with chronic illness, health issues and disabilities who are making a contribution in some way despite their pain, sickness, etc.

Elisabeth of Redefining Good – Spotlight Interview

Posted by Connie on Monday, September 6th, 2010 at 11:34 pm and is filed under Blogging Community, Chronic Illness, Spotlight.
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Elisabeth writes a blog, Redefining “Good“,  about living with chronic illness gracefully.  And Elisabeth has many health issues to deal with – Allergies, Anaemia, Asthma, Chronic Pain, High Cholesterol, Hypothyroidism, Insomnia, Lactose Intolerance, Migraine and Rheumatoid Arthritis. She began her journey with chronic illness in March of 2007, when she was being tested for high cholesterol levels. At that time hypothyroidism was found which took over 2 years to get her levels back to normal. The other heath problems started and she finds herself “having to redefine both my own expectations and the expectations of those around me.”

elisabethElisabeth, also known as “Don’t Call Me Lizzy”, resides in Florida with her husband and her “two feline dependents” Lucas and Zachary.  She works for a large university, where she trains faculty that teach online courses. She has strong views about how technology can assist students with special needs and enjoys working to find solutions for the faculty when the need arises. Her employer has been supportive of her as she may take longer to type and edit because of issues with her fine motor skills.  She also sits when training and has changed her schedule a bit, but enjoys her work and wants to continue working as long as she is able.

Family support is also something that Elisabeth is grateful for. Other family members have chronic illnesses and other health problems, so they understand what she is going through. Going out and socializing with friends, being physically active (especially taking part in 5k walks) are some things that she has had to give up or change. She has adapted her work schedule and her daily routine so she can do all she is able to do.

Elisabeth attends Physical Therapy sessions and takes part in swimming to keep her moving and prevent further joint damage. For support, she belongs to But Don’t You Look Sick and Chronic Babe forums. She explains how she feels about these support groups,

I have found so much information and support on these sites, it has really been a huge help. Just to be exposed to the full range of experience that these diseases can bring has helped me be more proactive in my treatment and informed in my care. Not to mention the bright, inspiring, and often funny people I have come to bond with, no matter how scattered we may be geographically.

I enjoy Elisabeth’s humor. She states that she uses cuss words on her blog “Because I can.” She also describes herself as a geek with an odd sense of humor. Just read one part of her description of herself and see if you don’t smile,

I am a geek. A Mountain Dew chugging, Dungeons and Dragons tabletop playing, Renaissance faire dressing-up, Monty Python quoting, comic book reading, webcomic addicted geek. I love cats and crafting. I read science fiction and fantasy. Some of my favourite TV shows are Buffy the Vampire Slayer, The West Wing, House, The X-Files, and The Simpsons, and Star Trek:TNG. When I can, I attend fantasy/sci-fi conventions (and yes, I make my own costumes). I listen to a wide range of music, but mainly New Wave/Industrial/Synthpop. Thankfully, Hubby loves me just the way I am and is just as big of a geek, so at least we both speak the language of Nerd.

And for someone who has the list of chronic illnesses that Elisabeth does her humor comes through her blog, even if you aren’t a geek. One of my favorites is “Things I Really Hate…

I’m inspired by Elisabeth because she finds a way to work, have fun and enjoy life in her own way.

This is an ongoing effort to spotlight people with chronic illness, health issues and disabilities who are making a contribution in some way despite their pain, sickness, etc.

Amanda Lakso – Chronic Pain and Ramblings Blogger

Posted by Connie on Sunday, August 15th, 2010 at 8:34 pm and is filed under Blogging Community, Spotlight.
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Amanda Lakso writes a blog, Chronic Pain and Ramblings to educate and support people with chronic illnesses especially Fibromyalgia.  She is 31, married and has an adult step-son.I met Amanda on Facebook, where she is very active. We chatted a few times and I asked if I could feature her as one of my Spotlight Interviews. Thankfully she agreed.


Amanda has Fibromyalgia, Chronic Myofascial Pain Syndrome, Chronic Fatigue Syndrome, Depression, Anxiety, Agoraphobia , Tachycardia and is Bipolar.  She’s been living with  pain and mental disorders since her early teens, but her actual diagnoses came later.
Amanda has severe widespread pain. She describes it well:

It feels like my muscles are all cramped up all the time and hurts to the slightest touch. The Chronic Myofascial Pain Syndrome I can only describe like this: Think of the skin on a chicken breast, it’s slimy and moves around really well. Now think of say your arm for example is made up of layers. First your skin, then the “chicken skin”, muscle then more “chicken skin”, then bone. My “chicken skin” has turned to concrete while most people’s move freely like the skin of a chicken breast.

After giving up a job that she loved 3 years ago, she has been trying to be approved for Social Security Disability unsuccessfully.  She is on prescriptions that cause her to twitch, which she finds embarrassing. Because of that and that the fear of leaving her home (Agoraphobia) as well as a fear of crowds, Amanda is almost always at home.

She has difficulty concentrating and has tried ADD medications without relief.  Because of this, Amanda has given up one of her favorite hobbies, reading, which is difficult for her. She was also a crafter, but now crochets or knits once in a while.  She does try to volunteer at her local fire department where her husband is the assistant chief, with reports. She also tries to volunteer at the library when she’s able. This gives her a feeling of paying it forward and giving back to her community.

Her family supports and understands her medical issues, but her is husband is her main support. “He has been wonderful about doing everything around the house. What a man!” She uses her blog to vent about the things that bother her and that helps her a great deal.

One book Amanda recommend is “Fibromyalgia for Dummies”.  She has a free copy for download,  or you can get it at your local library or an online bookstore.  Shes also like “The Complete Idiot’s Guide to Fibromyalgia”. There are so many books that she enjoys that she’s considering adding a blog page just for books.

Amanda recommends Fibro360 Forum, My Fibro, The Invisible Disabilities Advocate and The American Academy of Pain Management among others. You can find all of the websites she recommends by visiting the Links on the sidebar of her blog.

Contact Amanda and find out about her other blogs as well as where to follow her on Facebook.

Amanda inspires me as she has a positive attitude, but isn’t afraid to share when she’s feeling down. She reaches out to others who are in pain or have health conditions like hers.

This is an ongoing effort to spotlight people with chronic illness, health issues and disabilities who are making a contribution in some way despite their pain, sickness, etc.

Chronically Ill: How To Get The Most Out Of A Blogging Conference

Posted by Connie on Sunday, September 27th, 2009 at 7:41 pm and is filed under Blogging Community, Chronic Illness, DisABILITY Advocate.
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This week, I’ll be attending a blogging conference, IzeaFest. The schedule is full of learning and networking experiences. Normally I’d be worried about being fatigued and not feeling well but after attending the Affiliate Summit I learned how to balance having a chronic illness and being a conference attendee.  Here are the Top Ten Tips To Get The Most Out of a Blog Conference When You Are Chronically Ill:

  1. Rest Up the week before. Get yourself into a good sleeping pattern and even take some naps during the day so you can feel well rested before the conference.
  2. Schedule Your Time at the conference. Go through the schedule provided including the speakers, events and parties. Prioritize what is most important for your needs. In case you need a break, you can take it during the least necessary events. Although being there in person is the perfect scenario, most conferences are available on video later so you can take advantage of viewing what you missed.
  3. Eat Healthy Meals so that you are taking good care of yourself. If food is provided, take fruit or some other snacks with you. Also, remember to keep well hydrated.
  4. Take Advantage of Breaks. If you are going to attend parties and other networking events, then use the allotted break times to either nap or just find a quiet place to close your eyes and it easy for a few minutes.
  5. Take Your Medications on Time. Keep a timer to remind you to take your meds. I use the silent alarm clock on my cell phone. It can get so hectic that it’s easy to forget to take your prescriptions.
  6. Find a Buddy. A buddy can take notes for you, pass out your business cards, let people know that you needed a break, etc.  There are many things that you can do in return – write a blog post about that person, mention their help on Social Networking forums, write a reference for them, etc.
  7. Be Prepared to Miss Something. Even people who are healthy end up missing an event or even more. Sometimes it’s just too overwhelming. Travel problems may occur. Healthy people get sick too. There are many reasons. So don’t be disappointed if you don’t hear a speaker or attend an after party.
  8. Take Lots of Photos. Keep your camera with you at all times and take photos of the people and happenings around you. Try to write down a short note about the photo so you’ll remember the details later. This will allow you to post about the conference later and create lots of memories.
  9. Hand out Business Cards. Don’t push them on people, but after you start a conversation about the other person, ask them for their card, write down some notes on the back and then give them yours. If you can’t do a lot of networking, you can quickly introduce yourself, say that you need a break and really want to get to know them. Ask for theirs first again.
  10. Relax and Enjoy! You’ve made it to the conference and that in itself is a big accomplishment. Have fun, meet new people, network and focus on the positives.

My advice for photos is to use an xshot so you can be in the photo too. Plus, using this camera extender will get people to notice you.


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Work From Home With Blogging

Posted by Connie on Thursday, August 6th, 2009 at 9:02 pm and is filed under Blogging Community, Chronic Illness, DisABILITY Advocate.
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It is possible to work from home when you are disabled or have a chronic illness by blogging. If you can use a computer, spend a few hours a week online and can learn directions on writing blog posts, you can earn money online.

One of the main things you will need to help you in this endeavor, is web hosting. Having your own domain name and hosting helps you to earn more money because you will have more work options available to you. Finding a reliable web host can be difficult, especially when you are brand new to blogging. You can follow this guide to learn what you type of web host you need. You’ll need to know how much disk space you need, the cost you will pay either per month or per year and the type of support that is provided.

I suggest going with a host that has 24 hour support with a toll-free number. When you are brand new to blogging, you will have a lot of questions. You may also run into problems that you are unable to deal with on your own, so look for a good support program.

Finding dedicated server hosting does not have to be a daunting task. It can be the start of working at home by blogging.

Technorati Tag

Posted by Connie on Tuesday, August 4th, 2009 at 12:06 am and is filed under Blogging Community.
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This list is to help my blog and other blogs with our Technorati rating. I learned about this from a group on Blogging Moms.

Updated July 13th


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