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About a year ago, I was diagnosed with Stickler Syndrome. Stickler Syndrome is a common, but rarely diagnosed progressive genetic disorder that causes severe myopia (nearsightedness), blindness, loss of hearing, facial development problems, hypermobility, and joint pain. I am finally to the point of acceptance that I’m willing to talk about it and be more open about it, and I’m looking forward to Rare Genetic Disease Day celebrated on February 28 this year (traditionally February 29). Throughout the rest of the month, expect to see more information in posts and on my blog.Read More →

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One of my first memories is of sitting at the dining room table, next to one of my grandparents, peering through the edge of the large glasses he wore, amazed at how different the world looked.  I got my first pair of glasses at three years old.  As I grew older, my eyes got progressively worse, though I am fortunate enough that my vision is normal with contacts. Though technically referred to as “High Degenerative Infantile Myopia,” it is more commonly referred to as nearsightedness.  It turns out, I don’t just have bad eyesight, but I have a genetic condition known as Stickler Syndrome whichRead 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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It has been suspected (jokingly) that I’m a mutant creature, now I have the genetic proof of it.  And with the proof comes a new diagnosis.  I guess I really need to start at the beginning of the “story” since I haven’t posted about it publicly much since I didn’t know exactly what would become of everything.  Though technically, I suppose the beginning was conception, or whenever the gene mutated.  But I’ll start at the beginning of my introduction to genetic connective tissue disorders. While troubleshooting unexplained pain in my foot, my podiatrist commented on my hypermobility that caused me to be very prone toRead More →

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After a friend, Kylee, was hospitalized after a particularly scary series of dystonic attacks and still chose to post 10 positives for the day, I decided to follow suite and post a list of my own positives.  I also found this very appropriate quote which reminds me of the old hymn “Count Your Blessings.” Download the full song from iTunes 1. The weather has been beautiful!  I’m loving the thunderstorms that bring the rain the crops, garden, and flowers need as well as the warm spring days. 2. The flowers are blooming like crazy, and I’m actually able to enjoy them as my meds have managed toRead More →

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I don’t usually share videos, but this is too beautiful not to share.  It certainly brought a smile to my day and I discovered the song in my head as I go through the day doing things that are difficult.Read 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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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 →

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This was posted a bit early so I could submit it to the Chronic Babe blog carnival, enjoy! It is almost that time of year again; the time of year where people are looking forward to the new year and reflecting on the old one.  I have an even greater reason to do this.  December 31, 2008 was the day my surgery on my left arm that caused the start of my CRPS.  I was mostly drugged up and my arm was still numb from the regional anesthetic for that evening (I joke this is the only time I’ll ever be high on New Year’s), soRead More →

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This poem came to me in an e-mail from a blog called How to Cope with Pain. It really captures the idea of the fact that in spite of the pain, in spite of all that has happened in my life, I am still who I was, I am still me. My dreams may have changed, some of my abilities may be different, I may think differently about some things, but the truth is, beneath it all I still am who I was, I just have a different take on life. I Am Still Me My disease after all these years Has brought to lightRead More →