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View Full Version : Derrie's Continuing Teaching Hospital Anxiety



Derrie
09-21-2012, 06:47 AM
So, I know I've fretted about this ad nauseum. But I am still not totally happy with my plans to go to the teaching hospital.

Arranging the trip has been a pain-- organizing records, figuring out which doctors I'm going to see, working out pre-authorization, making sure they understand that I HAVE to see both internist and rheumatologist, plus any other specialists, within a three-day period (at first they just wanted to start me at internal medicine, and then would "refer me to other specialists if the internist wants to" -- and to that, I said, "Oh, hell no. I am not flying halfway across the country to see one doctor who may or may not refer me to a rheumatologist, which is the whole reason I'm going to your big fancy hospital." They hemmed and hawed about how this was how it worked. But then my awesome internist here called them-- but I digress).

And then I hear from them yesterday that they don't yet have my records, and they need them before they can set up referrals to other specialists, and juggling all this crap just has me so stressed out. I don't even want to go! I know it's not going to be useful. The only thing that would possibly tell anything is if my bloodwork has changed, and I can get bloodwork done here. It's not like I want a second opinion because my doctors don't believe me. My doctors here -- internist, rheumatologist, and dermatologist -- are amazing, believe I have an issue, and are treating me appropriately, considering I have no evidence of organ involvement (plaquenil and pain control). I know I'm hypocomplementemic, which can indicate a higher risk of future kidney issues. So fine, monitor my urine and blood for that.

I don't see any added value of going to the teaching hospital except that it will comfort my doctors that they're not missing anything. And I can almost guarantee they're not missing anything. I've been worked up so thoroughly.

I dunno, guys, every time I think about this trip, my feeling of anxiety goes through the roof. Part of it is probably because I am handling all the arrangements myself and I will be going by myself. So this is all on me, to manage all this. It's stressful. And without the likelihood that anything will come of it, it seems like such a waste-- of my time, my money, and my capacity for stress. And even worse, what if they say I'm just nuts, and then that undermines the great relationship I have with my doctors here? I've heard enough horror stories I don't want to risk the great relationship I have with my team here.

And now I'll feel guilty about backing out, too, because my internist especially has so generously put so much time into working this out for me-- talking to people at the teaching hospital, meeting with me to discuss benefits of this, getting medical records together, etc. But I DON'T WANT TO GO.

So, end rant. My anxiety is through the roof over this. Every time I think about it, my pulse increases, my brow knits, and I feel like bursting into tears. Oh, and did I mention my chronic illness counselor moved? So I'm not seeing anyone anymore, because there's no one with that expertise in this little town anymore. I just want to forget about my illness for a while-- I want to move on. Maybe I'm so upset about this because it keeps my illness in the forefront. And I'm so over doctors, testing, everything.

OK, now really end rant.

magistramarla
09-21-2012, 04:28 PM
Derrie,
I understand what you are saying. I've been there several times.
I've had docs get excited that whatever is their specialty is exactly what I have, only to be sent to a specialist who then ruled it out.
One neurologist was sure that it was spinocerrebellar ataxia. That was how I wound up spending a week in Houston having tests, which ruled that out, as well as Parkinson's and MS.
More recently, one was just sure that it was Spastic Paraplegia. I saw the expert on that, and she ruled it out, too.

I really don't mind doing the tests and getting the expert opinions, since it all adds to figuring it out. Hey, at least we know what I don't have!
I rather enjoy the little trips that I get to make - we always add in some sight-seeing and some nice evenings out to eat when we have to go to another city. Do you have an adventurous friend who might enjoy tagging along on your trip to make it into a mini-vacation?

Also, since you are worried about the results affecting how your local docs treat you, can you have a talk with them about that before your trip? Since your internist sounds so great, could you discuss your fears with him?

I have a rheumy who simply doesn't care right now, so I'm just taking my meds, enjoying California and biding my time until we move next spring.
I have a great PCP and a great rheumy back in San Antonio. I'm collecting what information that I've gathered while here (such as it's NOT SP), and I'll have a nice long list of questions for both of them when I get back. At least both of them welcome questions! I'm sure that they will have a brand new list of tests and lab work for me, since my current docs have neglected all of it. I will happily get things done then.

My suggestion to you is to have that talk with your doc and then go to the teaching hospital and treat it like a mini-vacation.
I hope that you get some answers, too.
Hugs,
Marla

tgal
09-21-2012, 10:24 PM
I have to agree with Marla. I too have been up and down the doctor/specialist road just to hear they can't find anything. It makes me so angry but I say don't give up. If you give up you give the disease more time to do damage and that isn't what you want! Go see them and enjoy the vacation. Get the best of both worlds if you can afford to do so

Derrie
09-22-2012, 03:02 PM
Thank you both for responding to my rather hysterical rant. I just want to be an ostrich and pretend none of this is my reality. And I think traveling to the big city to see a bunch of random doctors and students and who knows what else makes this more my reality.

I tried to escape from it last night. I went out drinking with friends, stayed out late, had two beers (which isn't all that much in my younger, healthier days, but it's been months since I've even had a sip of alcohol), listened to music, and just had a great time. I was riding high-- I felt pretty decent, wasn't noticing my pain, didn't feel that tired, and was thinking, "I'm totally canceling my trip to the teaching hospital. I'm fine! How did I convince myself and my doctors I was sick?"

Aaaaand then I woke up this morning. Let's call last night a Making Reasonable Life Decisions Fail. Much as I had fun, I'm clearly not bouncing back like I used to, and trying to ignore my issues is going to do more harm than good. I know I'm going to go back and forth on this trip a few more times before I actually go. I just have to figure out how to keep myself focused on going, so I don't back out at the last minute.

I have some friends in the city I'm going to, so I think y'all's advice is good-- if I make plans with my friends and maybe set up one "touristy" thing to do while I'm in the town, I'll feel more like I have to go, and like I want to go. If I frame it more like a vacation that involves a few medical visits, I might feel more positive about the whole thing.

I wish I could handle this all as serenely as you seem to be able to, Marla! Like Mari, I can get angry so easily, and get pissed at doctors, at myself, at the whole world for not knowing what is going on with me. If nothing else, it will be character-building if I can accept what's going on and what I have to do with more peace and grace.

Thanks, y'all, for listening to me. There is no one in my personal life who at all understands this frustration and what I'm dealing with, much as they try. It's just all so foreign to most people.

magistramarla
09-23-2012, 08:55 PM
Hang in there, Derrie!
I also have those times that I try to do things that my healthy friends do and then pay for it afterward. I serve on the committee for the wine & beer tasting and auction that our Spouses' Club sponsors every year. I work at the thing all day and we drink a lot that evening. We're smart enough to reserve a room at the Navy Lodge, and I am not a well person the next few days. Sometimes we just have to get out there, kick up our heels (ha, ha - wish I could really do that!) and have a good time - it's what keeps us sane.

Have a fun adventure in the big city, and report back to us about it, as well as what the docs figure out.
Hugs,
Marla

steve.b
09-24-2012, 03:33 AM
whilst you are there........
what else can you do to make it a special time?
is there a stage show, or a performer that you want to see.
is there some special attractions or something else that takes your fancy?

Derrie
09-26-2012, 08:46 AM
Gaaaaaaaaaaaaaaaah. (<-- Derrie's moan of frustration.)

The teaching hospital people haven't gotten their crap together, lost some of my records, aren't communicating between departments, etc., and it looks like we're going to miss the one window of time I could actually make the trip. Probably have to put it off for at least six months now, and that includes rolling over into a new year with my insurance (so, have to meet the deductible and out of pocket max again).

This is so annoying. I am so over this crap.

jmail
09-29-2012, 05:04 PM
Deep breath, slow exhale... maybe someone up above is saving you the expense of going, or maybe something would have happened on the trip... I can rationalize a lot of things... Sorry 'bout the way things are going Derrie. Can't be fun. Praying for you, and as steve says: 'gentle (((hug)))' or however he does that...

Derrie
09-29-2012, 08:41 PM
Someone pulled strings or something, and now I have two appointments (including one with a big fancy academic rheumatology appointment) and plane tickets to the big city. So when it all fell into place, I debated for a few days about going, but I've decided to go.

Meanwhile, I have been off Plaquenil for a week, and I can now say with confidence that the Plaquenil was doing its job. All my symptoms -- even the strange ones I thought I was imagining or overreacting about -- have come back in force. Much as this is causing me a lot of suffering, it is providing useful information. I can now point to which symptoms were quieted by Plaquenil and which have come back without it.

These big city docs better be useful.

(thanks jmail for the hugs!)

steve.b
09-29-2012, 08:48 PM
sorry you are having these symptoms come back.

time to take out pen and paper.....
list them, so you can talk to the big fancy rhuemy.
make him earn his money.....
dont let him control what information you offer.

Derrie
09-29-2012, 09:02 PM
sorry you are having these symptoms come back.

time to take out pen and paper.....
list them, so you can talk to the big fancy rhuemy.
make him earn his money.....
dont let him control what information you offer.

I plan to be very proactive at this visit. I've had enough practice to know what I need to do. I have copies of all my records/tests/scans/etc that were already sent ahead, just in case anything gets lost. Though, instead of a pen and paper, I use the Notes function on my iPhone to list all my symptoms, and when I've experienced them and what helps.

Someone advised me to bring a USB drive with all my rash pictures on it. Still need to do that. Better start a list of what I need to do before I go-- which includes coming up with a list of touristy things to do on my "vacation."

steve.b
09-29-2012, 09:16 PM
"a vacation".
that is the right attitude.
go and enjoy yourself.....
apart from a little doctors visit in the middle.

magistramarla
10-06-2012, 11:04 PM
Good luck, Derrie.