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Another doctor appointment!

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#1 amberjolie


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Posted 30 September 2009 - 11:11 AM

Boy, it sure seems like I've got a lot of doctor's appointments, and I don't have nearly the issues a lot of you currently do.

All through the year I've had tests and appointments until they diagnosed crest in June, then the cardiopulmonary guy, then the ENT for my lip biopsy, gotta see the ENT again in a week and a half to discuss the results, got the gastroenterologist in November, then the gynacologist in December. Got another breathing test in February, and I gotta see my endocrinologist (for hypothyroidism) before February, or else I have to be referred again if I need anything.

So then today, I get a call back from my rheumatologist (had asked about the menstrual problems on calcium channel blockers), and after she told me that I wouldn't be able to avoid that side effect from any medication I took for the Raynaud's, she said "oh, but you can talk to him about it at your next appointment. When do you see him next?"

Well, I hadn't made a follow-up appointment. I kind of figured they'd call me if I was supposed to have one. So she said I should set up another appointment, so now I've got yet another appointment in November.

I feel weird having to leave work early or take a longer lunch all the time, but I guess it's unavoidable now, eh?

#2 janey


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Posted 30 September 2009 - 11:28 AM

You say "...but I guess it's unavoidable now,eh?" Yep - especially right after diagnosis and then in spurts later on. A lot of what you are doing is baseline stuff and doctor's just checking to see what is and isn't involved, I would assume. So it's easy to deal with if you just consider them safety checks. The last couple of years I have been getting quarterly checks with my rheumatologist and yearly with my cardiologist and pulmonologist. It's been grand! But now it seems like I'm back to square one. My June pft came in pretty bad so I've had 5 doctor appointments and 7 different tests since then, and I'm still not done. So consider it cyclic. Hopefully once you get this wave of appointments finished, you'll ride for several years to come and if with a lot of positive thinking - indefinitely!

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#3 smac0719


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Posted 30 September 2009 - 03:52 PM


I have to cosign Janey as the appointments are cyclical. I am back on yet another cycle of doctors visits and tests and am resigned to the fact that it is par for the course. It is a good feeling though when the visits become less frequent. I try to schedule my appointments either first thing in the morning or late in the day as to not take too much time out during the work day.
I may have Scleroderma, but Scleroderma doesn't have me!

#4 Shelley Ensz

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Posted 01 October 2009 - 07:33 AM

Hi Amberjolie,

I agree with the others that, as time goes by, appointments get easier. First of all, a lot of the tests are just either diagnosis or baseline tests in the beginning. So the pace slows down, usually, after the big initial hurdle.

And after that, you'll find you can take charge a little bit more. For example, you may find that you are able to cluster some appointments together, perhaps knock off 3 or 4 easy ones or nearby clinics in a single day. On the other hand, you can also dribble them out. Many of the time frames are not very hard and fast, like annual tests that just need to be done somewhat after a year has passed.

Once you get these initial things under your belt, sit down with your calendar and decide basically what approach you'd like to try for a year. I have settled on a "cluster plus dribble" approach that fits my schedule best. With this, I cluster the majority of the main, annual-type things right together, such as a general annual check up, routine blood tests, and standard imaging stuff. You know, the basically easy exams and tests.

Then, I try to separate out any appointments that might be more intensive or at clinics that are farther away. Such as, if I need an endoscopy/colonoscopy, I try to set that aside, in a month of its own, and hopefully far apart from other doctor appointments. That way I can think of it as the "only big thing" I have to do that month instead of fret about how I'm going to get so many different appointments in all at once.

That approach is harder to do if you have to travel a distance to some of the major centers, where you necessarily have to cram in a zillion tests over the course of a few days. But if you have the choice, in your home territory, try to think in terms of having some control over the appointment process, and some input in arranging it to when it is best for you.

For example, if you get annual tests during the busy holiday season, take one year to realign that by moving the tests back just a few months, so they can fall during a slow time for you, or for your work, or for your family.

Things will never work out perfectly, but I've found that looking at it with an eye to efficiency and stress reduction makes the inevitable appointments easier to manage. Plus there is my husband's tip, which is to always make a necessary thing into a special occasion. He wouldn't dream of going to the dentist without going out to eat afterward and even wants to treat me to that; even over protests that my MOWFF ITH NUMMM. So I gently slurp a drink and nod pleasantly at his conversation.

A trip to his hospital clinic is always good for either their homemade fudge or their special fried chicken, health being beside the point by then. He was in the hospital again this week, and overjoyed by it, because he's getting a great collection of all their fudge flavors now. The latest being pumpkin fudge which frankly doesn't sound like the best combination to me.

Anyway, when we are planning the appointments, we also check around to see if there are any coffee shops or parks or malls or anything that interest us nearby, so we can look a bit more forward to the special event afterward than to the appointment itself.
Warm Hugs,

Shelley Ensz
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#5 Joelf


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Posted 01 October 2009 - 10:17 AM

Hi Amberjolie

I've found it's a full time occupation being ill; my life revolves round doctor's & hospital appointments......whatever did I do with myself before?? :huh:

All I seem to do is regale my friends with every scintilating detail of my condition; I'm sure they regret asking me how I feel as I know I'm rapidly becoming a bore!! :rolleyes:

Next week I go for a Lung Function Test & I'm really looking forward to the results to see if the gas transferance in my lungs has improved........how sad is that??!! ;) :lol:

I really should get out more!!! :lol: :lol:

Kind regards x
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#6 amberjolie


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Posted 01 October 2009 - 11:35 AM

Thanks for the replies, everyone! A lot of good points, and good advice! I guess I should count my blessings that all these appointments aren't just doctors shuffling me around with no diagnosis. :)

#7 amberjolie


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Posted 02 October 2009 - 10:11 AM

Not sure what I did so I may have a double post going on...

Anyways, got ANOTHER letter today about an appointment. But this time, I have NO clue which doctor referred me. No one told me they were going to send me to a cardiologist, so I wonder what that's specifically about. And I already saw a cardiopulmonary specialist. I would've thought they'd be most concerned with my lungs, not my heart, and besides, I've had both an ultrasound and echocardiogram recently, as well as a holter test, and all of those supposedly were fine. So I wonder what this guy's going to look for?