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Maureen Kaech {Mo} Advocate for Addison’s Disease

Posted by Connie on Thursday, March 29th, 2012 at 7:34 pm and is filed under Advocate, Chronic Illness, Spotlight.
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Sometimes the best way to cope with a chronic illness is to write about it warts and all, vent, complain and moan. Maureen Kaech, known as Mo, does on her blog, Day by Day with the Addison Girl. She also imparts health information and humor, and advocated for people with all types of health problems.

Maureen Kaech

Mo works to connect with others on her blog and in the forums she’s a member of.  She has found this is a two way street – she helps others and in turn they help her. Comments make her realize that she is reaching others and can “touch other people’s lives”.  In fact, Mo finds blogging to be a form of therapy. Partly it’s because of writing about her daily life with Secondary Addison’s Disease (Adrenal insufficiency), Crohn’s Disease, Hypothyroid, Hypo pituitary and Seizure Disorder.  And partly because of recognizing that there are other people like her, going through very similar health issues and life situations.

Mo’s Chronic Illnesses

During surgery for an ovarian cyst, Chron’s Disease was found in 1986. Mo says that she has a very mild case, especially when compared to other people she knows that has this disease. It may be because of the steroids she takes because of the adrenal health issues.

After going through the embarrassment of being considered a heavy drinker by an ER Doctor (because of her very low potassium level), Mo was finally diagnosed with Secondary Addison’s Disease in October 2001 by her Gastroenterologist.

Mo’s Life with Chronic Illnesses

Mo used to “Super Woman” before her diagnosis with Addison’s Disease and other illnesses, but things have changed dramatically. Because of the lack of strength, fatigue and other side effects from her chronic illnesses, Mo had to leave her job and go on disability. Her social life is gone. After turning down invitations from friends, they have now stopped coming in. She needs a housekeeper because she cannot clean her home anymore and she uses a grocery delivery service.

According to Mo, “Addison’s disease has changed my life completely.  Debilitating fatigue, weakness, side effects from my medications, brain fog, weight gain, and increased digestive problems have plagued me for over ten years.  I rarely leave the house and depend on my family for almost everything.”

How Mo Gives and Gets Support

Mo is fortunate that her immediate family – her husband, her two sons and her sister understand her illnesses and the limitations that come along with them.  “A few close friends sort of “get it”, but I have relatives and quite a few friends that don’t.”

The forum Chronic Babe has a group for women with Adrenal problems and other groups that help Mo connect with other live with chronic illnesses.  She also finds support and information from Addison Village.

When Mo posts in these forums, she provides information on what has helped her both medically and emotionally. She doesn’t like to give advice, but rather impart her experiences. She knows that others with chronic illnesses will understand. She has shared her story in a post about living with Addison’s Disease on the blog Fight Like A Girl Club.

Mo is an advocate for people with Addison’s Disease and other chronic illnesses because of her blog, her presence in forums and her real life experiences that she is willing to share with others online.

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.

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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.

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_lakso

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.

Elizabeth Norton – Cape May Moms Inspiration

Posted by Connie on Saturday, May 8th, 2010 at 6:50 pm and is filed under Loving Life, Spotlight.
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Elizabeth Norton is known for founding the Cape May Moms and is also an inspiration to many. She is born, raised and “blissfully stuck” in Cape May, NJ where she is working to connect people locally. She is an inspiration because she could easily sit back and feel sorry for herself with her multiple health problems, instead she is a positive force to be reckoned with.

Elizabeth is married to “one hunk of a man” @drivesmecrazy. “Make no judgment about it, he is the one that drives ME crazy.”  She has 2 sons and is “also the mom to 21 others that have left my home through foster care but never my heart.”

My 1st boy was a surprise after getting pregnant after being married only 1 month my second was not a surprise but surprises me every day because he is the complete opposite from my 1st. I never know what to expect from my little burst of endless energy.

Elizabeth had a delayed traumatic brain injury that caused her to have POTs – Postural orthostatic tachycardia syndrome – Gastroparesis (paralyzed stomach), detached retinas, and many more health issues. It was diagnosed in October of 2007,  but she believes that it began much earlier when she fell off her horse freshman year of high school.  She’s always had problems eating and with fainting since 8th grade.  After going through numerous tests, Elizabeth has come to believe that only God knows why this has happened to her.

She has  good days and bad days – “Days when I can swing on swings with my kids and days I lay in bed for hours. I live day by day and so do my boys and my hubby.”  Her immune system is weak and even common colds can keep her down for a long time.  She has begun to take care of her own health and uses vegetable juicing, the liquid form of acai and other things that she knows works for her.

elizabeth-norton

Elizabeth used to be foster mom and owned a thriving party planning business but had to give both of them up. “In a way it has been a blessing though because I have learned/am learning a new trade as we figure real time media (a.k.a. Social Media) and it’s effects and uses in our society.”

She’s lost many friends because of her invisible illnesses. Elizabeth accepts this by recognizing that, “My friends are human and made judgments. Many of those judgments I will not understand but one day will hope to forgive.”  Elizabeth does maintain relationships with good friends who understand, some in real life and some online. Losing friends and the judgment that came along with this has been difficult for Elizabeth, but she is “… learning that strength comes in what you can find in yourself spiritually and with those that really love you.”

Elizabeth talks about support:

My husband and I have been through a lot but he keeps me grounded, gives me a swift kick if I start feeling sorry for myself. My mom is slowly understanding the chaos of the last two years. In the moment there was so much I could feel but not explain. Things were happening but people couldn’t see them. My boys have been amazing and I think my 7 year old is one of the most amazing human beings that I know. He loves his brother and dad and without a doubt knew something was wrong with his mom. He didn’t ask questions like others. He just let me read him stories and hugged me a lot. I will always respect him and am so happy to see him enjoy his life as a kid a lot more now that I am out and about a lot more. I have had an amazing friend Tanya, that I think at many points has saved my life, my marriage, and my dreams. She was an angel through the toughest part of my life yet (and I have been through lots of heart break).

Her relationship with God is based on being able to accept God’s plan for her and feeling that she can be open and honest, even being angry when praying. She hopes to find a church home where she can fit in, where there members who love her as she is.  “I believe in God’s ultimate plan and feel he is using me as a tool.”

I am limited but I choose to replace the world limitation with placement. God knows where he wants me and needs me. He can bring a positive out of a negative. I strongly believe that he can take my life and pain and use it for the greater good. Am I “limited” yes….you could say that but I also am forced to listen and be still. With that combination I can learn many things.

Right now Elizabeth has three major business projects going on. I am planning (with the help of some awesome moms the 1st Ever Mom and Baby Expo, a tweet-up on the beaches of Avalon and to jump start the summer and an effort with local hair salons to ship salon cut hair locally to New Orleans to help with the recent oil spill.

Get to know Elizabeth Norton better online and if you’re lucky enough, connect with her in Cape May, New Jersey. If you have a business that needs guidance working online, she’s someone you should talk to. If you have any type of health issue or disability or are going through a rough time in your life, look to Elizabeth for inspiration. Her words and her giving spirit are sure to get you on the right track to thinking positively.

You can find Elizabeth Norton here:

@Elizabeth_N
Cape May Moms
Golden Inn Resort
Party Planning Professor
Professor Of Play
ElizabethNorton.com
Www.beeclicked.com

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.

Duane Burnett – Photographer and Volunteer

Posted by Connie on Friday, March 19th, 2010 at 10:50 am and is filed under Spotlight.
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Duane Burnett is a photographer who has worked in media. He lends his multiple talents as a volunteer for various causes. He is wiling to share his time and his soul, even though is going through a turmoil that most of us can’t imagine. Duane has multiple chronic illnesses as well as depression and vivid nightmares that are more like night terrors. This doesn’t stop him though. Although he is constantly fatigued, he continues lending a hand when asked and reaching out where he sees fit.

Duane was born in Ladner, BC and is currently residing in Sechelt, BC Canada. British Columbia plays an important part in his life and volunteer work. He worked as a photo journalist for the local community newspaper “which kept my mind off things and on purpose and in service to the community”. When he was let go from this job, it was heartbreaking.  This coincided with the loss of his four legged soul mate, Tundra, a Siberian Husky. Duane felt lost in the world and admits that he isolated himself. The depression became so overwhelming that he couldn’t work.

He is beginning to pull himself out of this now. He attended the Sunshine Coast Winter Olympics Torch Relay Celebrations where he took photos and wrote blog posts, and shared info on social media sites. He’s starting to get back in the game! His Facebook page is where he really gets things going. He shares about his latest triumphs, like being nominated for a BC Small Business CHAMPION of the Year Award. He also has a personal Facebook page, a Twitter Profile, and his Flickr profile where he shares his beautiful photos. He also has photographs for sale on Flickr.

duane-burnett-photo-art-for-sale1

One of the most meaningful things that Duane is doing is raising money for Tundra’s Accessible Dog and People Drinking Fountain. But if there’s a cause in BC, the Sunshine Coast, you can find Duane helping out and spreading the word. Even though he has been diagnosed with Depression, Sleep Apnea, Fibromyalgia, Chronic Fatigue, Chronic Pain, Nightmares and Social Anxiety Disorder, Duane wants to raise awareness and funds.

Here’s more information:

Duane Burnett is a community spirit award winning local photographer, photo journalist and actor who’s images have been seen extensively on the Sunshine Coast and around the world in numerous newspapers, websites, brochures, map guides, magazines and before the movie at the Ravens Cry Theatre. His photos are often front page each week in The Local newspaper. The Sunshine Coast has commented that Duane’s photography captures the “essence and spirit” of the natural world and community; that he is a photographer “extraordinaire,” “absolutely fabulous;” “bloody marvelous;” “magic;” and “a credit to our community.”

Though his scenic and nature photography is stunning, Duane is especially known for his ability to work with people. Duane brings out that special something in his shots of people that is unique to his work. He is part artist, creative director, tour guide, set director and entertainer. You’re guaranteed to have fun whenever he is present.

I’m inspired by Duane Burnett because he has that unique ability to get up when he’s down, even if that means he has to do it over and over. He shares his talents and gives of himself. His photography and volunteer work are well known in the Sunshine Coast. Let’s spread the word so they’re known even farther.

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.

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