In 2003, I was diagnosed with Central Diabetes Insipidus. The path to getting diagnosed was very long and painful experience. In the Summer of 2003, I was noticing an increase in thirst and I was very very tired. I had always been a water drinker but never really noticed how much I was drinking until I was filling up gallon water bottles before going to bed and then realizing in the morning that they were empty. I had a problem….and so begun the long process of being diagnosed.
The first doctor I went to, I was told I had “allergies” SERIOUSLY, I don’t think allergies could make me this thirsty. On another visit, she told me that I had a psychological disorder that made me have the “compulsion” to drink water. She told me that if I continued drinking the way I was, I could end up with water intoxication. I think I was limited to about 1 or 2 liters a day when at the time I was drinking some where between 3-4 gallons a day!! This was extremely difficult for me and refused to listen to this doctor that obviously did NOT know what she was talking about!!! OMG, seriously horrible experience!!!
After a few months of going back and forth with this crack pot of a doctor, I was finally referred to an endocrinologist. When I first met my wonderful Dr for the first time, I felt like I was in good hands. She ordered an MRI and a water deprivation test. For the water deprivation test I was told to not drink water for 8 hours (at home) and then go to a lab to have my blood drawn. It was pure HELL to not drink water for 8 hours. I lost a total of 6 lbs during that time. I drove to the lab first thing in the morning with a huge bottle of water to drink as soon as the test was over. Next was the MRI. It was scary to think about all the possibilities of what could be wrong!!
When I met with my endocrinologist after the tests, I was scared about what she would tell me was wrong. The thought of being on medication for the rest of my life scared me!! The thought of having a “disease” scared me. Everything scared me!! But, much to my surprise, I was diagnosed with idiopathic Central Diabetes Insipidus. My pituitary gland was “flattened” due to some brain fluid that had leaked on it. The only hormone that was affected was the antidiuretic hormone (ADH). I was then put on Ddavp and have been on it ever since.
The changes of getting Diabetes Insipidus (DI) at about 40 in a million. From what I have learned, diagnosing Diabetes Insipidus is something that is very difficult to do because there are so many different reasons why someone can develop it. I am one of the lucky ones. =)
When I got pregnant with my daughter, I was not sure how my water would be affected. I was happy when I found out that taking Ddavp while pregnant was totally fine!!! Luckily, I did not get any thirstier and did not need any extra medication. Nearing the time I delivered, I was monitored regularly to make sure the amniotic fluid was OK. Everything was perfect!! on February 17, 2008 I gave birth to my beautiful daughter. I chose to have a natural water birth. Which was perfect for someone with my condition. Before giving birth, I did some of the research showed that Ddavp could show up in breast milk and others showed that it did not. I chose to not breast feed. It was the right decision for me and my daughter.
After having my daughter, I started to work out on a regular basis and was always intrigued with the idea of running a half marathon. In January 2012, I ran my first half marathon not knowing how my body would react. I was not sure if I could do 13.1 miles with out any issues so I took it easy, drank at every water station. When I crossed the finish line at just over 3 1/2 hours, I was proud for so many reasons!! I did something that I did not think was possible for me as a Mom at age 36 but also because I can not retain water with our medication!!! I ran 3 other half marathons in 2012 and did another in Jan 2013. The day of the race was not good for me. I was thirstier than usual and had to stop to pee 4 times. So annoying!!! So I started to seek out info on fellow runners or athletes with DI. I did not see anything anywhere!! So, I decided it was time to educate people on my rare condition. To help others who are newly diagnosed and to support those who had it for a long time.
I am no expert on DI. I am an average person who has a rare medical condition who loves to run. Some of the people I have talked to with DI have said how hard it is to lose weight or that their doctors are telling them not to work out due to the delicate balance in our bodies. For me, I find that working out helps me stay balanced!!
As far as diseases go, I could think of much worse!! As long as I have my medication, I am happy and live a “normal” life. Of course, people that I spend time with, know that I drink more than the average person. When I go to restaurant, I ask for a pitcher of water, with a straw please, no joke, lol!! Most of the time people think I’m joking…
Sometimes when I tell people about my condition, people hear the word “diabetes” and automatically think blood sugar!!! NOPE!! Most people don’t know about this other type of diabetes, the water type.
If you or someone you know, has Diabetes Insipidus, please share your experience.