First, I want to say HI and tell you all that I have really missed writing on here. It has been hard for me to get into the mindset of writing when I am dealing with a lot which is why I have been trying to stick to other ways of advocating and staying connected to the IBD and chronic illness community in the meantime. Ex, instagram @JournalingIBD, twitter @JournalingIBD and my facebook support page. It has worked since I know withdrawing makes things worse but it is still not a substitute for writing. And I really thank you all from the bottom of my heart that you take the time to read my posts, comment so I know I am not alone (or talking to myself) and just offering me a general feeling that all will be okay. So many of you have become my second family and one that understands me in ways that most people can’t even fathom (regardless of how hard they try.) Again, THANK YOU!

Second, this post may seem all over the place but I would like to get out a lot of what has been going on with me medically so the posts to follow make more sense.

To make a long story short, in addition to having a deblitating migraine every single day (I have barely been able to leave the house when I don’t have some relief), my stomach has been feeling very “off.” It is distended when I wake up in the morning but is exacerbated enormously whenever I eat something.

I have also been incredibly nauseous and while I am not experiencing real pain in my abdomen (thankfully,) I am incredibly uncomfortable. This, of course, greatly impairs my ability to sleep, do things I need to do for myself and loved ones, and has been really taking its toll on my mental health. It is hard to feel like a productive member of society when all you do is lay in bed with heating pads and crying on and off with your dogs beside you.

After being treated like a drug seeker by a doctor who had her mind made up before she entered my room because I had “been there before and got pain medications” in urgent care, I had no choice but to go to the ER for the first time in years on December 23rd. As many of you know, I do not go to the ER or hospital unless I feel there is no way of coping without it.

The day after Christmas, I had my long awaited appointment with a new Gastrointerologist which I will save my opinion of for a later date. She ordered an upper GI/ small bowel follow through (aka small bowel series) which was the right thing to do and it showed I had a large amount of fluid in my stomach and a motility disorder in my stomach and small intestine. When I asked the radiologist who was telling me certain things throughout the test if this would account for why I didn’t absorb any medication properly, why I require such a large amount of pain medications that only lasts for a short period of time, and some other issues I was dealing with, he gave me an absolute yes.

While I, of course, don’t want to deal with anymore issues, when you know there is something wrong and you feel like you are on the way towards discovering the root of your problems, it gives you hope. Answers lead to treatment plans which hopefully leads to a better quality of life.

I also saw a pain management specialist given how desperate I am to function like a human being and all she had to say was how complicated my case was. *eye roll* Thank you for stating the obvious!

In addition, I just got off the phone with my neurologist, who I originally felt understood what I was going through, but now.. I am not so sure. I explained to him about the results of the small bowel series and how it tied into me not absorbing any medications the way typical patients might. I also wanted him to know I followed up with a pain specialist so he knew I was taking the necessary steps towards figuring out the root cause of my pain. {I do not believe it is neurological. I believe it is indirectly (or directly, I have no idea) related to what is going on in my abdomen.}

Instead, he told me I could play around with the dose of a new preventative medication he called in (without discussing it with me.) “Given the fact that you are obviously not absorbing medications properly, you can start taking 100mgs, even 200 would be fine. Play around with the dose.”

Let me get this straight: he is acknowledging I don’t absorb medications correctly (the originally script was for 25mgs only) yet is shocked that I go through medications quicker than I should. I know he is doing his job theorectically but sometimes, you have to listen to YOUR PATIENT and understand where they are coming from. Not everyone is textbook.

So that is pretty much the gist of what I have been dealing with me. I appreciate so many of you checking in with me on social media. You guys have seriously been life savers as I have been cooped up in bed feeling incredibly alone for a while.

Thank you for listening to me rant a bit and for always being there to support me.

More posts to come soon now that I am in more of a writing mood.

Side note: I will be categorizing my posts to make it easier to navigate this site. All in due time though… AND there will be a “follow” option coming soon as well.