Trying piece the rhemy visit together

Yesterday was my very first time to see a self proclaimed vampire. I believed her after she ordered 8 vials of blood to be drawn. Lol I am a bit worried, as she mentioned that she was seeing something else, beyond lupus. Some kind of muscle disease. She would not talk about it further other than to say she sees symptoms of both, and assured me that She was not saying that I don’t have lupus, but that I need to be prepared for other things being at the party. I was glad that the swelling in my finger joints went down, but she did not get to see the sausage fingers or the giant red knuckles I normally deal with. When she grabbed my hand and started feeling around, I did what I normally do; pretend it does not hurt so I don’t scare the person hurting me. That might have been bad, I decided, because she is the rhemy, not my niece wanting to hold my hand or my mom thinking she is being nice by rubbing it.

The doc was also very concerned over my lungs. Shortness of breath, cough, clear mucus, pain in chest. Heck, I am concerned too. So she is sending me to get a CT. I really hate those. It will be at least a week before I do that. Insurance wants her to look at my x-ray from Nov first. Makes sence.

The best parties that she upped my prednisone to 20mg a day. 10 was hard to live on. The 20 was perfect. Maybe that sounds scary, but I like functioning way too much to be worried yet. After all, I am not eating much on the 10, and my stomach is always sour. I am getting the dizziness again, which I hate, and my body hurts more. I can take the pain, but why when I can have a little less?

I am worried about the little things I did not get to tell her, like the month sores that went away on Prednisone, or the wierd white film on my tongue. The strangest is the smell of cigarette smoke when I cough, yet I have never been a smoker. She listened, and was very open with me, but the cognative process only pushes so much through the fog these days. Maybe my symptom log will help next time? How do you guys do it? I need suggestions. Thisis all so new to me. I was getting strange looks from all the older patients in the waiting room. Lol


I just had to laugh at your last comment about the strange looks you get in the waiting room! I feel like that, I think they are wondering what I'm doing there cause I don't look sick, right? lol.

Good planning on your part for the symptom log, that will help. Do you have someone that goes with you or could go with you to your next appt?

Don't try to hide your pain from your Rheumie, but a good Rheumie can tell. My son went with me on my last visit, and he asked me afterwards if the doctor hurt me - and I said yes, he knows exactly how to touch.... He found I had fibromyalgia on my last visit.....

I put all of my questions, refills needed, anything I need to mention, in my phone. I always have my phone, so I won't forget my notes.


The first thing that came to mind when I read your post was about you not looking sick. I think that this is something that we all deal with. Over the years, people who are closest to me are able to tell, but not others; including the rheum. In my experience the rheum can tell where it hurts from the way the joints look and feel on touch. It is helpful though if you tell him when it is painful.

It is also normal for the doctor not to consider all of your concerns. I don’t know how often you go, but I go every 3 months. In that span of time, a lot can go wrong in a lupus patient. The doctor will try and find the most pressing issue and deal with that first. For you, this would be the lung issue. I know that it is very discouraging, but with this disease sometimes we have to take it one symptom at a time.

As for what I do when I go to the doctor, I usually have a good idea what I want to talk to him about, so I don’t use a list. However, when I was still a teenager my mom would make me make a list of everything that was occuring so that I would be able to remember when I went to the rheum. I think that this would be helpful.