I had the appointment with the rheumatologist yesterday. This was the appointment that had been messing with my mind for a while. I knew that if this doctor didn’t take my symptoms seriously and actually do something…I was not going to take it well. My safety was definitely an issue.
So, I went in expecting less than nothing. I expected him to barely listen to me and to blow me off and say what my ear,nose and throat doctor told me: “your body is just weird”.
I went in prepared. I read on the internet that a good way to get a doctor to listen to you is to list your symptoms in the order that are the most worrisome or bothersome to you and then go from there, so I typed up a list and printed it out. I started with the fact that my lymph nodes have been swelling constantly for over two years now and that it’s been documented by doctors. I told him about my parotid gland swelling a few weeks ago and he interrupted me. He said, “You just told me, but go on reading.” I was puzzled but I went on with my list, the extreme physical pain, the extreme fatigue, the feeling of being sick without ever actually getting sick. I told him about my hands turning into ice no matter how warm it is and staying that way for hours until they finally get warm which then causes pain. I told him about my ENT saying that I have carotidynia (swelling around my carotid artery) and that it comes every two months or so, sometime more. Whew! After I finished reading my list. I kind of hung my head, waiting for the blow the inevitable blow that would come like when my ENT said for me to wash my hands more and take some zinc because people get colds all year. I waited and he said that everything I said could be explained by something called Sjogren’s Syndrome. He told to wait and he was going to get a brochure to show me. After he walked out the door I almost fell out of my chair. I couldn’t think clearly for a while until he came back. I had to ask him; “You believe me? You mean you don’t think that I’m making it up? That it’s in my head?” He said “I believe you.” and I’m not sure how I didn’t fall on the floor in relief.
He gave me the brochure and told me that he wanted me to read it and see if it sounds like me. He checked me physically and asked some spot-on questions and said he wanted to do a few blood tests but not repeating ones that had already been done by other doctors. I told him blood test are not my friends as I’ll have weird results and normal ones. He said that it’s common with this syndrome. He also remembered though that last year, they had done test on me that implied that my muscles were being damaged back then. Back then he had a woman, maybe a P.A. who would carry some of his patient load and she brushed it of after the tests came back high twice. He’s going to look over past test and over all the records from other doctors that I had copied to him. I’m to see him in on the 6th and we’ll talk again. In the meantime I’m supposed to research Sjogren’s on the internet too. Huh, a doctor not threatened by patients who look stuff up on the internet. Who knew?
The words “I believe you.” have a lot of power. I’ve noticed that in therapy of course. Having a therapist who believes you when you tell them that someone hurt you, and they believe you even when no one else did or when the person hurting you said you were making it up or being overly sensitive. That’s powerful. Having a psychiatrist who puts your symptoms together and can diagnose you with something real and then treats you with something more than saying; “You need to exercise more.”, that’s powerful. This was powerful too. This doctor seemed to understand my frustration even though i stayed calm the whole time. It’s like he knew that I’d been to several doctors only to be blown off, but I didn’t tell him that. He repeated himself and said “This brochure means that I believe you.” and he patted me on the shoulder and told me make an appointment for two weeks and go downstairs to get my blood drawn.
Just like that, I had a doctor who finally listened. I don’t know what will happen in two weeks. I do know that if he hadn’t listened to me yesterday, I may have ended up in the E.R. last night with self-inflicted knife wounds. I was at the end of what I could handle and thankfully I was pulled back a little. I’m grateful for that.
I can’t be completely optimistic, that just wouldn’t be like me would it? lol! 😉 Two weeks now seems like forever and I keep thinking that yesterday was a fluke and that when I go back he’ll say that he was wrong and there’s nothing wrong and nothing he can do. He’ll tell me to take ibuprofen and follow-up in a year. I have to think that way because expecting the worse is how I function in life. Huh, I’m fun right?
My psychiatrist left to go out-of-town for a week yesterday which means both he and my therapist are gone for now. Scary. My therapist is coming back for a few days and I will see her on the 30th and then once more a couple of days later before she goes back. I’m kind of stretched all over the place in many ways.
I wake up everyday and some lymph nodes somewhere are swollen and hurting, I’m tired but I get fatigued to the point where I can’t walk or sit upright anymore and I have to lay down. The body pain is beyond desription. On the other side, I’ve gained more weight even though I’ve been eating fat-free, plain yogure and granola. I’m considering starving myself again so I can at least stop wanting to vomit at my own image. I’m working my way to it by trying to eat less and less each day. I have no mental health team at the moment which has never happened and I’m very aware that I need to keep in mind that my husband is a great guy so I need to put in more effort to pretend with him, so I don’t take my anguish and craziness on him. I still like the idea of the asylum but meeting the doctor yesterday eased some of the pressure. If I had a choice thought, I’d find that padded cell and live there. I don’t know how I am or what I’m doing. I just know that someone finally listened and I’m going to try to hold on to that until something else happens later today to beat me down. And yes, I’m aware of how perky I sound 😛