Life Experiences and Advice for Living with chronically Ridiculous illnesses
Dear Supporters of a Person Who Is Chronically Ill, Today I want to give up. It happens every once in a while. Chronic pain is a fight you never get breaks from. It is all day every day, and lately for me it has been all night every night. Pain and lack of sleep have…
Having a chronic illness that has no cure and only a little research often makes someone vulnerable to try anything once. Some people pray off of that vulnerability and try to market “natural” products. These people take advantage of the poor science education most of America receives by making their claims sound scientific. They usually…
The Dysautonomia International Conference was in July in Washington DC. I was able to attend this year and it was a really impressive and informative conference. I flew to Dulles, Virginia a day early from Denver because I have never been to Washington DC and wanted a day to recover from traveling. Friday my parents…
Did you know that October is Dysautonomia Awareness month? Raising awareness is so important for Dysautonomia patients. Even though there are a lot of us, there are so many people (including doctors) who don’t know anything about Dysautonomia. The Dysautonomia International Conference had an excellent talk on things you can do to raise awareness. Many…
Having a chronic illness that has no cure and only a little research often makes people vulnerable to try nearly anything once. As a result, some scam artists prey off of that vulnerability and try to market products that do absolutely nothing or very little. Each Sunday I will investigate a treatment- do their claims…
I usually talk and write about POTS and Dysautonomia. Like many people with POTS I also have hEDS (Ehler’s Danlos). The Ehler’s Danlos National Foundation (EDNF) had a conference this weekend. One doctor, Dr. Lavallee, managed to outrage most of the EDS community with just one slide. Dr. Lavallee put up this slide. If you…
Support groups are wonderful for those of us with illnesses others just don’t get. Groups on Facebook can be great and convenient, but also hostile and dramatic. I know illness can lead to high tension, but we are supposed to be supporting each other! So here are some things I noticed happening a lot; things…
The medical profession is supposed to be about helping people. I have been lucky enough to have some wonderful, caring, and compassionate health care professionals. I have also had some absolutely horrific experiences healthcare professionals. Dealing with doctors and nurses who don’t understand and make my life more difficult has been one of the hardest…
Like a lot of people with Ehler’s Danlos III, I have back problems and hip problems. In the past, I have received epidurals for the pain and the injections have been lifesavers. This time my body decided to be uncooperative. The first injection went fine, but as they began the second injection Cerebral Spinal Fluid…
POTS affects between 500,000 and 1,000,00 in the USA alone, according to Dysautonomia International, but isn’t very well known in the medical community. It is more common than Parkinson’s and Multiple Sclerosis- so why has no one heard of it? Some of this is due to that POTS was just recently given the name POTS…