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Why I Write About My Health #HAWMC

Posted by Connie on Wednesday, April 4th, 2012 at 10:43 pm and is filed under Advocate, Chronic Illness, DisABILITY Advocate.
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I write about my health because Reflect on why you write about your health for 15-20 minutes without stopping.

I began to write about my health as therapy. It felt good to get the feelings about how much my life had changed out my head and onto my blog. At first, I didn’t even know that it was blogging! I found a site on Yahoo and just wrote about whatever came to me. Soon, I realized that I was so negative because people would leave me comments to cheer me up. When I realized that I was such a downer, I wanted to lift up other people’s spirits. There were so many others who had it worse than me. I began to write about funny things that happened to me at a doctor’s office, at home, when I was out. I made fun of myself and ended up laughing at myself too. My negativity began to melt away in real life and my loved ones noticed. Doctors, nurses, patients complimented me for always smiling.

Now, others were coming to my blog to get a laugh or find some inspiration. Realizing that I was helping others made me feel better. My outlook changed. Soon, I had a real blog and then another (this one). I continued to share my positivity. Of course, some days, I had to vent.  Next, I began to research about illnesses and share that info. Comments were left because someone found my post about their rare illness, or because they learned something new.

When I heard about National Invisible Illness Awareness Week, I knew I had to get involved. That’s when my efforts at being a health advocate began in full force. Blogging was one of the best outlets because I could write a heartfelt post and then share it on Twitter, Facebook and forums. When my daughter was diagnosed in late 2010 with chronic health issues, my advocacy efforts increased.

Comments, tweets and other connections help me to continue. If I reach one person, I’ll continue to write about my health.

Why do you write about your health?

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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.

Being Comfortable At Home While Disabled

Posted by Connie on Thursday, June 23rd, 2011 at 8:19 pm and is filed under Advocacy, DisABILITY Advocate, Health Supplies Equipment.
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It is possible for a disabled person to be comfortable while at home. There are many home improvements that enable a person who needs specific adaptations, equipment for sale, help available for physical needs and assistance animals that can help secure safety. If a person becomes disabled through an accident or illness or a person is born with disabilities, that the belief is that that person must live in a facility. Sometimes there is funding available through the government, through health insurance, through non-profit organizations and through the community.

What is Needed in the Home

Go through the home and see what is needed. Do you need to remove items or add something? You can get the aid of an occupational therapist and/or the salesperson of the equipment look through your home with you. Perhaps you need to lower sinks, raise a toilet or add a ramp.  Maybe you need to add a completely new bathroom or bedroom, or do something as simple as remove throw rugs for safety.

Equipment

Ambulatory assistive devices and other forms of medical equipment to enable a person with disabilities be more independent and live at home are available online, at stores and through rehab centers. Many people learn about equipment from other people in support groups or through the suggestion of a therapist – physical therapist, occupational therapist, speech therapist, etc. Of course there are wheelchairs, canes, walkers, etc. But did you know that you can have IV equipment, hospital beds, platform lifts, mechanical breathing devices and other equipment that you associate with hospitals or facilities.

Help Available

In some cases, Registered Nurses, Licensed Practical Nurses, Certified Nurse Assistants, therapists and even live in help is available to the disabled person living at home. Even if that person has family living with them, there may need to be checkups, and respite care. If a person needs total care, an assistant may live in the home to help with various care issues – changing tracheotomy tubes, using a disabled lift, cleaning and using a g-tube. Although the person or family or friends may be able to do these tasks, a break is often needed. Also these are such delicate medical concerns, that someone in the medical profession may need to check on them frequently.

Assistance Animals

Another way to keep a disabled person safe at home is by using an assistance animal. Dogs, cats, monkeys and other animals are trained to help people with various disabilities. These animals can alert a person when they need medication, can open doors and perform tasks, and keep the person company. They are often very close to the person who is disabled as they spend a great deal of time with them. Some people develop a very strong bond especially as the animal comes to learn about their quirks and needs. These animals can be just as important as wheelchair lifts to a person in a wheelchair.

Conclusion

It is necessary for a disabled person to be comfortable at home as it is necessary for a disabled person to be safe. Make use of the agencies and medical professionals to make the decisions you need.

Myasthenia Gravis Awareness Month 2011

Posted by Connie on Sunday, June 5th, 2011 at 5:49 pm and is filed under Advocacy, Chronic Illness, DisABILITY Advocate, Health Information.
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June is Myasthenia Gravis Awareness month and for 2011, the  main focus is “Uniting for a Cure… Together we are Stronger.” The Myasthenia Gravis Foundation of America is asking us to help share information about this disease and to help find better treatment and ultimately a cure.

Myasthenia Gravis Awareness

As someone who has had Myasthenia Gravis for 8 years, I’m always willing to do what I can to help this organization. Plus, since I know that even medical personnel often do not know what MG is, awareness is very important. In fact it can save lives. When someone with MG goes into a crisis, they may not be able to speak or let anyone know what is happening with them. Everyone from first responders to surgeons needs to recognize the symptoms of Myasthenia Gravis, how to treat someone in crisis and what medications can help or harm.

I’ve written about what my life is like with Myasthenia Gravis. It gives you a picture of some symptoms people may experience. I hope that you’ll take the time to read it.

The Myasthenia Gravis Foundation of America describes MG as:

Myasthenia gravis means “grave muscle weakness.” MG affects voluntary muscles such as those in the arms, legs, eyelids, mouth and those muscles used for breathing; the disease is characterized by general fatigue. Currently, there is no cure for MG, but there are effective treatments.

My first symptom of having MG was a droopy eyelid, which quickly moved to weakness in other parts of my body. I have had a thymectomy within the first 6 months of being diagnosed. I take Mestinon and Cellcept and am seen by a neurologist who specializes in MG through the MDA. I have good days and bad days and have learned my limits. Some days I need to use a scooter to get around, some days I can walk around a shopping mall. The heat of Florida does a number on me, so I stay indoors often, or go out in the evening.

MGFA’s mission is to find a cure for myasthenia gravis and closely related diseases, to improve treatment options and provide information and support to people with myasthenia gravis through research, education, community programs and advocacy.

Please support Myasthenia Gravis Awareness Month by sharing this post, by volunteering, by making a donation, and by being an advocate.

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April is Autism Awareness Month

Posted by Connie on Sunday, April 3rd, 2011 at 9:16 pm and is filed under DisABILITY Advocate, Health Information, Non-Profits.
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April is Autism Awareness Month in the United States. This month is set aside specifically to educate people about Autism, help with funding of programs for Autism and
and for research. According to the CDC, their

most recent report from the 11 sites that make up the Autism and Developmental Disabilities Monitoring (ADDM) Network identified 2,757 children with autism spectrum disorders (ASDs) in a total population of 308,038 children aged 8 years, indicating a prevalence of approximately one in 110 (or 1% of children)

That information alone should cause you to get involved in sharing the information about Autism Awareness Month. There are various types of activties planned for April 2011.

  • Build-A-Bear Workshop is selling its special edition Nikki III bear in its more than 200 stores across the U.S. and Canada, with a portion of the proceeds benefiting Autism Speaks and purple satin hearts for $1.
  • The Autism Society is proud to partner with Academy Award®-winning director Gerardine Wurzburg to release her feature length documentary Wretches & Jabberers. The film will be released through nationwide “movievents,” which will include a screening of the film and a live panel discussion featuring Tracy Thresher and Larry Bissonnette, the film’s featured self-advocates with autism.
  • Take political action for Autism by staying up to date with Take Action from The Autism Society.
  • Walk for Autism, take part in events in your area, volunteer and donate.

Events for The Autism Society can be found here – 1Power4Autism
Events for Autism Speaks can be found here – Austism Speaks Upcoming Events

Here’s the trailer for Wretchers and Jabbers. I believe that you’ll learn from this and want to learn much more.

How To Treat People Who Use Mobility Aids

Posted by Connie on Wednesday, March 2nd, 2011 at 10:38 pm and is filed under DisABILITY Advocate.
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I use a scooter when I have to walk long distances. When I do I feel as if I’m a different person because of how people react to me.

People who use mobility aids such as a wheelchair, power chair or scooter are people just like you. It’s difficult enough to admit the need for these types of medical devices but to go into public to feel ignored, unsafe or unworthy makes some people who have health issues stay home unwilling to face the world, or too angry and stressed out.

Family Disney World 8/06

Image by ConnieFoggles via Flickr

To make our lives easier, there are many things you can do.  I’ll provide you with suggestions on how to treat people who need an assistive device to be mobile. Please use these ideas and educate others, especially children.

Acknowledge Us

It really is hurtful when your mind works just fine, yet people don’t look at you or talk to you when you’re in a wheelchair. If you feel embarrassed and don’t know what to say, at least smile and say hello. If we answer then you know the door is open for conversation. You can also just begin to talk to us. If there is a problem with our speech, most people will have another way to communicate. Just do your best. If there is a speech issue, you’re not the first person to let us know that. A smile or a kind gesture can mean the world to us.

Be Cautious

Darting in front of a power chair makes us have to stop suddenly. This is not only a difficult maneuver, it can be dangerous for both of us and painful. Most power chairs and scooters are not made to stop on a dime. We have the issue of possibly falling over. Many of us are in pain any way. Making a sudden stop jars our bodies and can make us feel worse.

Watch Out In Crowds

Please be mindful of us especially in crowds. Teach your children this. Many assistive devices have horns but by the time we see you it can be too late to beep. We also don’t like to scare children with the loud noise of a horn. Please be watchful and look before you leap!

Many of us don’t mind questions especially from children. A child’s curiosity is normal. We have probably been asked the same questions many times and know some funny yet educational answers. We can be our best ambassadors if given the chance. This type of interaction can really open doors.

Handicapped Restrooms are for People with Disabilities

Public restrooms are a real difficulty for some of us. The handicapped stalls are for our use because we can’t get our assistive devices into the regular size stalls. Some of us need the bars to transfer from our scooter to the toilet. Please don’t use this stall because you need room for your children or because it’s open. These are designated stalls and even some of them are too small and difficult to use. (But that’s another story.)

Handicapped Parking is for Disabled People

Disabled parking is a very big topic for us. It doesn’t matter if you’ll only be 10 minutes and use up a space or if you have a placard from your sister-in-law’s aunt’s cousin, if you’re not disabled don’t use the handicapped parking spots. I refrain from saying “please” here because this has become an epidemic of sorts. Think of the person who needs to use this spot and then find another place to park.

If someone doesn’t look disabled and used a handicapped spot, don’t say confront us. Many of us have invisible illnesses, such as Lupus, Arthritis, Cardiac conditions, etc. You have no idea how we feel by looking at us.

Our Part in This

Yes we have a part to play in this too. We shouldn’t zip through crowds as if we’re on a race, or get rude with people who didn’t see us or just didn’t know. How can we expect kindness if we show disrespect?

Most of us are happy to answer questions. There are even some schools that have a disabled person visit and talk with the students to enable the children to learn about disabilities. Talk to us not only about why or how we’re disabled. Learn about us. We have jobs, families, interests and we can be great friends.

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