Grin and Bearing the Pain

I have been quite horrible about making new posts this summer, I am really going to try to remedy that from now on. Below is an account of what has been going on within the past week.

I get pain that most people couldn't handle, or at the very least it would cause alarm. I am used to pain, though I still feel it fully and it still really sucks, I am used to getting myself through whatever pain my body decides to conjure. Sometimes the pain gets too bad for me to handle alone, and whenever this happens I have to really wrestle with the idea of going to the ER. It has happened many times before and it will no doubt happen many times in the future.

Recently I had one such incident. About a week ago I started to get really bad pain in my right side. It came out of nowhere, at first it was dull, just an annoyance, but it rapidly got worse to the point where I was in tears. It takes a lot for pain to bring me to tears, so this was in a league above what I normally feel. My mother had already gone to bed as she was working the night-shift. I sat downstairs and thought I would brave it alone, but the worse it got the more I had to think about going to the ER. I ended up waking her up and we did go to the ER that night.

The ER is the last place I want to be even if I am in a lot of pain (no one wants to be in the ER), but it could have been serious so I definitely needed to get it checked out. I dreaded the routine, a routine I have down completely at this point. I dreaded getting an IV because my veins are not good, so it usually takes more than one try for them to get it in. This time they had to put it in my finger, which as you can imagine isn't pleasant. The thing I dreaded the most was seeing the doctor. I live in constant fear of being accused of "faking it". I had a few horrible experiences in the past that have scarred me for life.

Luckily I got a doctor who seemed competent and who believed that I was in horrible pain. He ordered some meds to help my side and my nausea, which luckily did help a little bit. Just like always the doctor ordered tests and I waited, and I waited, and then I waited some more to learn that all the tests came back normal. Then I was discharged, still in that same pain that I had come in with. So I ask myself time and time again, what is the point, was it even worth going in? I don't really have an answer for that, but I can tell you it always feels quite futile to me.

A week later and I am still having pain in my side, albeit less intensely than I was having before. I have an appointment with my primary care doctor, which is probably a pointless appointment as well. I constantly have to grin and bear the pain and other symptoms I deal with and rarely get relief from my symptoms. It is quite tiresome. The scary thing about all of this is that one day it could be something really serious and I might say "screw it I am not going to the ER", and that could be the time when I need to be there the most. My symptoms, my pain are always a guessing game as to what is causing it.

I have something (associated with EDS) called Sphincter of Oddi disorder, which in the most basic terms means there is too high a pressure flowing through this little area in my side. I have had to have a procedure called an ERCP a few times in the past to remedy this, basically they go in there and cut it so there is less pressure built up. This pain at first did not feel the same as Sphincter of Oddi, but now it does, so I am thinking that is what is going on. Basically I have to grin and bear it all the same and if it doesn't go away (as I was told in the past) I will have to have another ERCP. I don't think that will happen this time, or at least I am hoping with everything I have. I go to New York Presbyterian Hospital (in NYC) to get the procedure done and it just a hassle in a lot of ways just to even get to the hospital let alone have the procedure.

My body is a mystery and not the fun Scooby Doo kind. Although I might have an idea of why I feel the way I do, it is still anyone's guess as to what is really causing it and why. I am so sick of this guessing game, but even if I do know what is going on, that doesn't really change the result. I just have to deal with it, deal with a pain so bad it brings me to tears because there is nothing else that can be done.

UPDATE: I had my doctor appointment a little while ago. She thinks that I had a bad stomach bug that has been going around that irritated and caused symptoms of gastroparesis to act up. Now gastroparesis is not the same thing as Sphincter of Oddi. According to Web MD " Gastroparesis is a condition in which your stomach cannot empty itself of food in a normal fashion....A damaged vagus nerve prevents the muscles in the stomach and intestine from functioning, preventing food from moving through the digestive system properly." Gastroparesis is just another disorder/dysfunction that my body decided it had to have. I have dealt with gastroparesis for years, but it has been awhile since it really acted up, so I guess I should take that as a blessing...a rather sad one. I have such a complicated medical history that it is almost funny, I joke about it as if I wore these conditions as the latest accessories or something. In reality having so much wrong with you is quite tiresome and very depressing. I never know when something is going to screw up my body and my life. I am like a time bomb waiting for the next thing to go wrong with me.

#SpincterofOddi #ER