Post Soundtrack: Count On Me by Mat Kearney
It has occurred to me that perhaps it would be of some use to share the other questions I asked my rheumatologist last visit and what his answers were. Please keep in mind, these were answers directed specifically to me by my own doctor. I highly advocate asking your own doctor if you have questions of your own, or want to know what your doctor thinks of these issues. This is meant to be helpful information, not advice on what to or not to do.
Just as a recap, I'll include my first question to him.
Q. Should I be concerned about sunlight? To what extent?
A. Yes. You should be wearing SPF 70 or higher sunscreen, including under your clothes. You should wear a large, floppy hat anytime you are outside. Avoid going out between 2 and 5 p.m. Stay out of the sunshine as much as you can.
Relevant questions I did not ask that I will be asking next time:
- Should we tint our car windows, and if so, what percentage? (There is a form I'd need him to fill out if it's above 35%.)
- The sunscreen bottle says to reapply after two hours. Do I really need to put it on under all my clothes every two hours?
- Is it possible to spend all day at a theme park or similar situation? Are there extra precautions I could take?
- Would using a laundry product that adds sun protection to my clothes be a good thing? Would it cut down on how often I would have to do all-over sunscreen?
- How would UPF clothing (50+) affect how often I needed to do all-over sunscreen?
Q. Should I be taking vitamin D?
A. Usually I only prescribe vitamin D supplements when a patient has a lot of difficulty with exhaustion and (I've forgotten the other problem he cited, sorry!), as those are the things vitamin D is proven to help with. I don't mind if you take over-the-counter vitmain D if you prefer, though. I just generally don't prescribe it unless there is a need.
Relevant question I didn't ask:
- Is D2 or D3 better to take?
Q. I've been having ear aches lately. Are they related, and should I be worried about them?
A. While Lupus can cause inflammation in the ear, if it was related to your Lupus, it would not come and go. It is not likely to be involved with Lupus, so talk to your primary doctor about it.
Q. I've realized that recently I've been having migraines. I have read that some consider them related to Lupus, but others don't. Who should I talk to about them?
A. While some Lupus patients do have trouble with migraines and it does seem like it may be involved with Lupus, the problem is that it can't be treated or affected by all the typical medicines we treat Lupus with. Because of this, if you are having migraines, talk to your primary doctor about it.
Q. With my eye history as well as now having Lupus, should I be seeing an ophthalmologist?
A. Yes, at least once a year.
Q. How do you, my doctor, define a flare?
A. (He strugged.) However you define it. Whenever your symptoms get worse. If you think it's a flare, we'll call it a flare.
Questions I did not ask and probably should:
- How would you define remission?
- What should I do if I'm having a flare? Should I call you?
Q. I recently had the stomach flu. What should I do in a situation where I can't keep my medicines down?
A. The only medicine you have to make sure to keep down is prednisone. If you can't take the methotrexate after a day or two, just wait until the next week to take it. The rest you can wait and take when you feel better. If you are still throwing up and unable to keep your prednisone down after two days, go to the ER. You could be vomiting due to prednisone withdrawal. Be sure to tell the ER staff that you are prednisone dependent, because they will need to give it to you intravenously.
Overall, it was a very informative visit. I went prepared with these questions, and his answers all made sense to me. Forgive me for forgetting exactly what he said about vitamin D. He also highly approved of me keeping a journal of up and down days. I told him that I was having a hard time telling if I was having more up days or down days, and he replied that I was going back and forth a lot. (He used the gesture like scales tipping back and forth between your hands.) It was reassuring to hear him say that, because sometimes I feel like I'm crazy, and that things really aren't as bad as I make them out to be. His candid understanding of my state was a relief.
I highly recommend taking a pre-prepared list of questions with you to your appointments, especially if you are going months between them. Write them down as you think of them if you can, as I find that all my questions disappear the day of the appointment. (I get a little anxious and nervous.) Make sure your doctor knows you have questions that you want answered, so that you don't end up throwing them out as the doctor is heading out the door. The answers won't be as complete and clear to you if you surprise your doctor in the hallway with them! I also suggest writing down the answers if they are involved, have medicine/condition names that will be hard to remember, or if you usually find it difficult to recall what the doctor said later on.
