Peparing For Doctor's Appointment

[LastUnicornLady]

Hello, everyone! I've been very quiet lately it feels like, because so much has been going on for me. I just finished a stint with physical therapy for a knee injury, and I'm also preparing to be in a theatrical production next month. All that combined means that I have had very little time or energy for DINET. As sad as that is.

Anyways. It just dawned on me that I have less than a month until my first appointment with a new doctor! As the days creep by, I am both excited and nervous. I may be looking at a diagnosis of EDS, which is exciting and disappointing. I am excited that we may find the cause of my POTS. But EDS is yet another incurable, chronic illness that's hard to treat. It could also potentially mean the end of my dancing... Dance has been my life ever since I was two, and the idea of giving it up scares me. Who am I without my dancing?

But what I really wanted to talk about was the appointment. I really want to make the most of the time I have with the doctor, since it's been a pretty long wait to see him. With my terrible brain fog however, I know that I will need to bring notes or something so that I don't forget. What all would you suggest bringing? I guess I'll try to put together a list of things I'd like to bring up, but if you have any tips, they would be much appreciated! You might have something to add that I haven't thought of yet.

[BeforeTheMorning]

Hi,

I also have an appointment with an EDS doc soon, and I'll be interested to see other people's suggestions too.

One thing that I think is good, is to wear light layers, so that you can take things off in the hospital, as they're almost always overheated, and if I get too hot then I'll get more dizzy and lightheaded and that really doesn't help when you're trying to communicate with someone!

I hope you're appointment goes well.

Best Wishes,

Lyla

[LastUnicornLady]

Lyla, good luck on your appointment, as well! I will definitely be wearing lightweight clothing, because I am terribly intolerant to heat. Funnily enough, the cold is also pretty bad for me... It's a fine line between too hot and too cold. By the way, your name is beautiful!

[Raisin]

One thing I had trouble with is that I have a list of questions but then after they answer the question, I brain fog and kind of do an "oh" answer. Lol For instance, is the blood pooling in my legs? Then, he said yes. AFTER the appt. , I thought, "why didn't I ask him WHY he thinks the blood is pooling?" Or, when they order a test, I would like to ask what they are looking for in suggesting said test.

Another thing I might suggest is to go over your list again before the doc leaves the room. For me, it is like going to the grocery store and not double checking the list again before the check out lane. I THINK I have gotten it all but inevitably....I forgot something.....again.

[blueskies]

One thing I had trouble with is that I have a list of questions but then after they answer the question, I brain fog and kind of do an "oh" answer. Lol For instance, is the blood pooling in my legs? Then, he said yes. AFTER the appt. , I thought, "why didn't I ask him WHY he thinks the blood is pooling?" Or, when they order a test, I would like to ask what they are looking for in suggesting said test.

Oh, Raison,

I do exactly the same. I feel like an idiot afterwards.

blue

[blueskies]

Great. I quoted myself as well as Raisin. Sorry people.

blue

[Raisin]

Heehee Blue!

[BeforeTheMorning]

AnaBanana, Thank you! And lets just hope we both get some answers at our appointments. That's funny about the fine line between hot and cold, I get that as well. On a recent warm day, I was finding things hard because of the warmth, and someone said to me "Hang on, just a few days ago you were saying it was too cold for you" I said "Yeah, there's a very fine line right between the two that's just right"! I think POTS can be a very fussy illness!!!

[Mermaid]

I've seen a lot of doctors now and think I am starting to hit on some things that work, at least to convey information quickly, if not for useful treatment...

For my last two appointments I prepared a one page A4 summary with the following headings and bulleted points under each heading.

Headings as follows:

Current diagnoses (include what, who by, date)

Current medication: bulleted list

Current symptoms: bulleted list

How the above affect my daily life. (More bulleted points, and think this heading is important)

The last doctor referred to 'an excellent summary' in his letter so think it works and it saves wasting time bringing doctors up to speed. I haven't been able to find one doctor to look at anything holistically yet.

I think next time I am going to add another heading something like:

Why I am seeing a rheumatologist, or cardiologist whatever

And under this heading, list somehow what I'm hoping for/ expecting from them.

I would not go over to two pages, they can't cope in my experience with that and bullets of facts, no emotive statements, work best.

If you have symptoms that are episodic, I have skin colour changes, take photos. I've found flicking through a lot on an ipad doesn't work, so pick the 'best' five or so. Even better take print outs that can stay on your file.

I also have a list of prepared questions but haven't been great at either getting onto those in the time or getting answers. Work in progress there.

Another thing is demeanour/appearance - when I was first sick and in a lot of pain and couldn't get anywhere other than obscure psychological diagnoses I often got tearful which never helped but really my behaviour in the circumstances was unsurprising as many here will relate to. Now I'm starting to run things more like a business meeting I think I might be presenting too well, it's a point my husband has raised. Hard to figure out a middle ground here.

I also can't work out whether I go looking awful or try and look my best with good clothes, make up etc. Hard one, at last appointment the doctor started off with 'You look well. Should you really be here (giggle).'

He meant well but not always best thing to say to someone who feels awful every day. I just said something like 'thanks, however I know I used to look and feel a whole lot better' .

Hope some of this helps, sorry for length!

Barbara

[blueskies]

Barbara,

I think your style of list sounds great. I usually scribble my questions down on the back of an envelope or something -- not very effective. I used to be very organized..sigh.

I agree, much better to keep emotion out of it if at all possible. I save that up for my psychiatrist.

The way to dress is a bit of a connundrum. Usually I don't make much of an effort though because I'm just not up to it. I usually go for comfort clothing. Just getting to the appointment is hard enough and please god, they don't make you wait too long.

blue