Look for the light and you will often find it, look for the dark and it is all you will ever see
Today is Rare Disease Day. There are over 6,000 diseases and disorders that are considered rare. Meaning in Europe, it affects fewer than 1 in 2,000 people, and in the United States, fewer than 200,000 people are affected. While these diseases and disorders are rare, being affected by one isn't. In fact 1 in 20… Continue reading Rare Disease Day 2019
Early this morning I meet with a new neurologist, one that I have been wanting to see for a while. When he accepted my case and I booked my appoinment I felt like I was going to finally get somewhere. This is because he sees and treats comlpex disorders/cases. He would be able to work… Continue reading The Trifecta
So, today I got my 8th? PICC line placed (peripherally inserted central catheter). They had to make a second incision because it wouldn't thread in the first spot. Basically they told me my veins narrow in certain places they shouldn't and that overall they are tiny baby veins. My luck. They tried threading the guide… Continue reading Percy the PICC Line
It is now exactly a month until I will be going under the knife for the first time. Thirty days from now, on April 9th, I will be waking up with some new hardware in my body. I will have a titanium bar in my chest as a means of correcting my pectus excavatum, a… Continue reading The Countdown Begins
Ya'll get a second post this week because I need to vent about my frustrations in finding a chronic illness or chronic pain support group. It seems that if you have a chronic or invisible illness you are invisible to the world. I have found less than a handful of support groups in my area… Continue reading I Am Here, I Am Hurting
Well my cardiologist appointment went decently, I got some answers but they were mostly what I have been told before so it's not anything enlightening. Basically I was told that, and I quote my doctor, I 'almost have Postural Orthostatic Tachycardia Syndrome' He said I have all the symptoms except for the fact my heart… Continue reading Cardio Appointment
