30 Things to Do While I’m 30
2017-01-06
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 →
I’m Not Your Inspiration
2016-09-15
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 →
A Rant About Latex
2016-01-12
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 →
Good News, Bad News, and a New Diagnosis
2014-07-12
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 →
Five Years
2014-01-01
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 →
Goals for 2014
2014-01-01
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 →
Finding Joy in the Little Things
2013-05-22
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 →
Rare Disease Day – All About Stickler Syndrome
2013-02-28
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 →
Rare Disease Day
2013-02-12
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 →