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In: Chronic Illness, Chronic Pain, Cooking, Dogs, Garden, Pets, Photography
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Some people do a “30 things to do before I turn 30” list, well, I’m a little late for that since I’ll be 30 in a month.  When I was 15, I did make a goal to visit all of the continents before I was 30.  I made it to 5 out of the 7 before my chronic illnesses prevented me from international travel.  While I still dream of visiting the final two (Antartica and Africa), it won’t be anytime soon.  Instead, I decided to make a list of 30 things to do while I’m 30. 1. Make a website about cavy genetics. ✓ 2. Hang portraits of my petsRead More →

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In: Autism, Chronic Illness, Chronic Pain
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The posts are all over the internet, giving people warm, fuzzy feelings.  A grocery employee squishes a loaf of bread and the patron writes a letter to the grocery, but she isn’t angry, she praises the grocery for hiring an Autistic employee.  A man buys a cake and asks for something written on it, but when an Autistic employee writes on it in spite of not being supposed to, he shares the story with the world.  A disabled man wets himself, but a non-disabled person comes to the rescue, escorting him to the restroom and calling for clean clothes.  I could give hundreds of examples that circulateRead More →

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In: Chronic Illness, Chronic Pain
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This is a picture of me, five years ago.  Five years ago, I had a surgery on my arm that was supposed to stop the tingling from a pinched nerve and prevent nerve damage.  Five years ago, that surgery damaged my nerves and sent my autonomic nervous system into a tailspin. Five years later, I’m still experiencing the pain and affects of that surgery, and they aren’t getting better, they are getting worse. This is the first year that I actually didn’t think about the fact that it was the anniversary of my pain, the day passed just like another holiday.  But now, I thinkRead More →

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General Information The rare disease I live with is Stickler’s Syndrome, Type III (formerly hereditary arthro-ophthalmopathy) as a result of a mutation of the COL11A2 gene. Because of a genetic flaw, my collagen strand is weaker than normal.  This affects hearing, vision, facial development, and joints. Stickler Syndrome is so rare that it doesn’t even have it’s own diagnostic code, it is billed under the same code as many other rare genetic disorders or billed by symptom (sensorineural hearing loss, joint pain, etc.). Aside from the geneticist who diagnosed me and the genetic ophthalmologist who saw me at Cleveland Clinic, I have never met a doctor who has heardRead More →

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Remember the nausea and related problems that contributed to my medical leave of absence in February?  Turns out it wasn’t the flu, an IBS flare-up, or even another kidney stone.  As my symptoms continued and even became more severe I started seeking some answers and thus some help.  My gastroentestinologist did a few tests including an EGD which showed a slight hiatal hernia, but that didn’t explain all my symptoms, even in combination with Irritable Bowel Syndrome. The next step was to have an abdominal ultrasound followed by an imaging study to track the function of the gallbladder.  This showed that my gallbladder was functioning well below normal in spite ofRead More →

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In: Chronic Illness, Chronic Pain, Mental Health

I’m not the only one who is doing the April challenge to do something every day, there are others, and one got an interesting response on a post with pictures of some beautiful flowers she had photographed.  The response said simply, “looking at flowers does not stop the pain.”  The blogger had her own response, but I thought I’d respond to it as well. So, does doing something enjoyable, like taking pictures daily, looking at photos of beautiful flowers, or anything like that really help your pain? I honestly believe it can.  Not only does doing pleasant things alter the neurotransmitters that can affect yourRead More →

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In: Chronic Pain, Dogs, Pets, Photography
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April 16: Fish are hard to photograph, but here are two of the fish who live in my room – Hope III (female Betta) and Tuberosity (the cory cat, aka Tubby).  I had to do a major cleaning of my fish tank because I noticed I had Planaria Worms, a non-parasitic worm that lives in fish tanks and feeds off the food remains. April 17: Another part of the big cleaning project, my dad built new shelves in my closet.  I’ve been wanting these for a long time, so I’m pretty excited about them! April 18: I had a bit of an accident falling downRead More →

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In: Chronic Pain, Cooking, Dogs, Garden, Pets, Photography
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April 6: After my mom bought a pie crust, disappointing my newly found skills at pie crust making, I decided to make a crust and turn it into ickles.  Ickles are a pie crust rolled into a rectangle, covered with a layer of brown sugar and cinnamon, rolled up, and baked. April 7: After experiencing digestive issues over the past few months, my GI decided to schedule me for a EGD (upper GI scope).  I asked for a copy of my images to share, the results showed that I have a hiatal hernia which is causing the reflux.  This is actually good news because itRead More →

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In: Chronic Illness, Chronic Pain, Mental Health
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It can be frustrating when you have ideas for your life that just don’t work out how you planned.  As part of academic advising, I had things all planned out, I knew what classes I was going to take when.  In spring of 2013, I would graduate with a Bachelor degree in Neuroscience.  Everything looked so nice and neat on paper. The past few weeks have been a real struggle.  Between going to Cleveland Clinic to evaluate a possible genetic condition, the development of a seemingly invincible urinary tract infection, and some other health issues, class has taken a back seat to my health.  AfterRead More →

On:
In: Chronic Pain

I am incredibly honored to have recieved the Liebster Blog Award from Chris Dean who blogs at Life Your Way.  “Liebster” is German and means favorite or beloved.  The point of the award is that it is given to blogs that are somewhat less known.  I’ve noticed this among other blog awards around, but never expected to receive one myself. I’m even more surprised by the kind description she used to describe me and my blog: “I haven’t been following her long, but Amber is a fun-loving, positive person with a big heart! Don’t believe me? Check out her post ‘Crazy Sock Day!’” Now it is myRead More →