The hospital is only about two hours away and both of my parents are going. Abbie is going to take good care of Asher Dasher.
I'm mostly just hoping that the doctor will be receptive and open to trying to understand the etiology of my problems and also to finding the best ways to manage them.
Okay, it's a little embarrassing to post this on my blog, but most of you already know that I am famous for having to pee all of the time. Even my friends called me Tiny Bladder in high school. Plus, I'm trying to be authentic and honest about my experiences with chronic illness.
The problem is that I have to pee on average about 20x a day. Just this morning I was up five times b/w 7 am and 1:30 pm (which were prime sleeping hours for me). Sometimes I'm up more than a dozen times at night. I also pee out very large volumes of fluid, even with both 1. restricting my fluid intake and 2. taking what is called DDAVP/Desmopressin, which is the anti-diuretic hormone our bodies should make naturally. When the DDAVP wears off (I take it twice a day), this can mean that I have to pee every 15 minutes. And I wonder why I never get anything done?
Over the past ten years I have sought advice on this issue, but so far no one has had any satisfying answers. We have suspected something called Diabetes Insipidus, which is not at all related to 'sugar' diabetes. With Diabetes Insipidus, a person either does not produce the anti-diuretic hormone that DDAVP re-creates or does not produce enough of it.
Because so many other medical issues have taken and continue to take center stage over the past ten years, I have had little opportunity to pursue the etiology of this particular problem. However, to say that it interferes with quality of life is putting it mildly. It interferes with sleep, the ability to go places, the ability to rest, etc. etc.
Endocrinologists are in short supply right now in the medical world. And finding one who knows anything about Diabetes Insipidus is especially challenging. I wasn't too thrilled about going for a medical appointment the second day of the new year. But, it is a long wait to get into an endocrinologist, so I took what I could get. It's just not true that people in America don't have to wait for medical care. We do. And sometimes we have to wait a very long time for very important medical care.
Honestly, I just dismissed my issues of large urine output as insignificant and minor for many years. I worked harder to pursue the 'bigger picture', but last year my urologist commented that he had never seen anyone put out such a large volume of urine in his entire career. He said to me, "I have never seen anyone like you in my lifetime, and I will probably never see anyone like you again." It wasn't until I was in his office and he recorded my urine output that he took me seriously. I had been telling him for years that I had this problem, but it was treated as Overactive Bladder and/or Intercystial Cystisis. Needless to say, I've seen more urologists since then and still have no answers--except that my case is complicated, complex and challenging.
My ANS doctor does not use DDAVP very often and does not have many patients on this medication, so I am starting to believe that I cannot entirely blame this problem on autonomic issues alone (although they may contribute largely to the problem) or Lyme.
Diabetes Insipidus is incredibly rare. So, the chances that I have it aren't that great. But, knowing whether I do or not would be a good place to start. Years ago, I had the testing done for it at another hospital, but it was so poorly done (as they had never performed the test before) that have no idea whether the results have any merit or not. At that time I tested positive for Partial Diabetes Insipidus, meaning that my pituitary gland does produces some anti-diuretic hormone but not enough.
Mostly, I'm just hoping that tomorrow's appointment will start off the new year on the right foot medically. That doesn't mean I need an answer tomorrow. That doesn't mean I'm asking for a magic wand to fix my problems (although that would be nice!). It just means that I want the doctor to have an openness and willingness to help me.
Some days, on top of everything else, I'd just like to be able to rest comfortably or take a nap. I'd like to be able to get a good night's sleep. I'd like to be able to drink a cup of hot tea in the afternoon without worrying about how it's going to keep me up all night long peeing. I'd like to be able to make it through a massage without having to pee in the middle of it. It feels like I just get settled in and comfortable and it's time to get up to pee again. Individually, each medical issue might not be so bad, but on top of everything else having to get up to pee so often when all I want to be able to do is rest can be the straw that breaks the camel's back for me. It can be so incredibly frustrating! After my gallbladder surgery, I was often peeing up to 40x a day, when all I wanted was to stay in a supine position so that I wouldn't keep feeling like I was going to pass out!
I have not been keeping up much with medical updates, so I my goal is to try to do so more often through my blog...even if it sometimes means sharing embarrassing details! I'll try to send out an update post-appointment, although I'll likely be pretty crashed from the trip!
Speaking of having to pee...
Blessings,
Emily
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