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In: Cancer, Chronic Illness, Dogs

Anniversaries are weird. I don’t mean the marrying kind, I mean the cancer kind. “Cancerversaries” as some call them. One year ago, I heading to the hospital to do my lung biopsy, making a dinosaur out of pipe cleaners for the doctor, thinking everything was fine. The next thing I know, I’m overwhelmed with surgery and treatment and stages and everything else. It’s been a lot to go through this past year. The reason I say it is weird is that I feel I’ve grown and changed and adapted, but I have so much more to go through. I’m a little over a quarter ofRead More →

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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 →

On:
In: Chronic Illness

I hate latex. I hate going to the ER. I hate that I can’t go places without the (very real) fear of a reaction. I hate that my body thinks latex is going to kill me. I hate that my body tries to kill me because it thinks latex is going to kill me. I hate that latex is in everything. I hate that latex is everywhere. I hate the after effects of a reaction when I don’t use Epi. I hate the after effects of using an Epi. I hate taking prednisone after a reaction. I hate that if I don’t take prednisone, IRead More →

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In: Chronic Illness
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Well, it seems that the fainting I mentioned in the previous post is here to stay.  I’ve had four different medical tests to determine the reason for the fainting and they revealed both good news and bad news. The good news is that my heart is structurally sound.  This was a concern due to the fact that I have been diagnosed with Stickler Syndrome.  A related disorder, Ehlers-Danlos Syndrome (another genetic connective tissue mutation), often affects the heart’s structure.  After a echocardiogram and a stress test, they have concluded that as of right now, my heart looks good – both at rest and during exercise.Read 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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In: Art, Chronic Illness, Dogs, Pets
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Did you make any New Year’s Goals or Resolutions? I like the word goals better because it is something to work toward rather than saying I have to do it.  That means if I mess up, I can just get right back up and start off again, rather than giving up because I broke my resolution. Here are my 14 goals for 2014. 1. Learn to love myself. 2. Take at least one online course to learn something new. 3. Train my dog in rally and earn a title. 4. Spend 10 minutes each day cleaning or organizing something. 5. Do art more often. 6.Read More →

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In: Chronic Illness
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Life has been rough the past few weeks.  As allergy season began with the blooming of the trees and flowers, I had the typical allergy reactions I have every year.  They aren’t fun, but are usually tolerable for the most part.  This year, they moved into my chest and I developed bronchitis.  A visit to the doctor after a week of misery, coughing, and not breathing and I had some medication that got me to feeling better. Then suddenly I developed other symptoms – a return of my fever and fainting.  Concerned, I returned to the doctor to get things checked out.  The fever couldRead More →

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In: Chronic Illness, Chronic Pain
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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 →