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Sjogren's Syndrome Support

Multiple appointments - just going to the appointments is going to wear me out!

Tomorrow, I am going to an intro to yoga class. On Monday, I go and see the opthamologist.

Wednesday, I am getting an EEG, then going to the hematologist to get blood drawn. On Thursday, I am going to try and go to a support group in my area. The next week, my neurologist. How do I rest, when I am running to all these doctors? I don't see my rheumatologist until mid april. I am so run down just working 1/2 days at work.

Does anyone else have the issues of when all these doctors trying to take care of you, just wears you out?

Ok, time for bed, be well everyone!

Mamabear

OOOH yeah. I have had weeks like that. If it helps any they do tend to even out. I see 2 of the docs every 4 months and 2 every 6 but when something is up (like now) I spend more time in doc offices and labs than anywhere. Or so it feels. I just try to remind myself that its not the norm…and I stack up my labs until I have a few to take and have the blood work done all at once. Same with runs to the pharmacy. Whatever I can do to minimize the impact on my day-to-day life. Yoga is a good thing though, thankfully. Its starting to do wonders for me. It took a few tries to find the right instructor but I must have because it helps a lot now.

Good luck and hang in there!!!!

I concur, Mama Bear. It wears me out with all the appointments -- one doctor for each part of me. It's like there is no end. When the eye doctor wants to see me again in 2 months I want to say "Do I really NEED to come back here again that soon?" Not to mention all the sick time I have to take off from work - and the traffic and the parking problems of it all.

DLT88,
Hi! I’m in agreement with you about sick time from work.
Also, I was able to get a handicapped sticker for my car, that helps when all the space aren’t full. Perhaps you can apply for one?
I’m newly dx, so the appointments are daunting, but I fee like part of a machine where nobody looks closely. I’m Learning a lot on websites for Sjögren’s, but feel like I do have time to speak with the doctors who zap my energy. And around and around it goes.
I hope you have a good day and are feeling well.
Mamabear.

Mamabear,

Isn't it ironic that health professions who are supposed to get us better end up zapping the energy we have. Good description of feeling like a machine part. I don't think I'd be able to get one of those handicapped stickers because I still (thankfully) have a lot of energy and can walk long distances. I guess what gets me the most about appointments in this city is the high parking fees everywhere. I'm still struggling with some intestinal issues today, but it will improve in time if I am careful what I eat. I hope you also are having a good and feeling ok today.

Diane

Hi Diane,
It depends on the day for energy for me.
Been in bed most of the week. I also have three dinners in a row (going out). It just worked out that way.
Mamabear

I feel the same way! Especially since all of my appointments are out of town. That’s the way small town living goes though I guess. Just going to my eye doctor is a whole days process because he is 2 1/2 hours away. Rheumatologist is only 1 1/2 hours away thankfully, since I spend most of my time with him.

I moved to another city where there is a hospital system with docs associated with the hospital. Now when I get a referral to another specialist my medical record is in the same computer system and I don't have to waste a lot of time explaining EVERYTHING again. My PCP can see what the specialists have done and my Rheumatologist can see lab results ordered by other docs. It makes billing a bit easier as I get two bill, one from hospital and one from clinic.

Butler,
That sounds like the way to go. I would love something like that where I do have to do paperwork every time I s someone.

I have the same thing as Butler....everything is computerized now so they all see the same thing. Even the outside company that does xrays, cat scans, mris does it and they give you access to the report too. I usually see it before I actually hear from my doc! But it really helps that they don't duplicate bloodwork, etc that was just done or will tell them what they are looking for.

Definitely! Especially since, even though I have given written permission to share all records, none seem to know or care what the others are doing or saying.

I have one of those weeks this week, psychologist, neuro, phys. therapy, all in 2 days. so many different types of docs for one condition. I sometimes wish I was rich just so I could find someone who specializes only in SS or a center like the one at John Hopkins. Maybe then I would have faith in the decisions made. I have been given large reasons not to trust the care I am getting personally. Sigh........

I had a lot of weeks like that in the beginning... then I stopped. I explained to my doctors that I simply couldn't do it anymore. It took some time, but eventually things settled down and I picked one doctor to be the main one (blood work, most prescriptions and such) run through her, this way there's 1 blood draw, not 2 or 3, done on one day at one lab. I rarely see my other doctors anymore and even if they want/need to see me more frequently I simply let them know that unless there's a very good reason it simply isn't going to happen. I should see them more often but emotionally, psychologically, physically and financially I just couldn't do it.

It's great that you are still able to work and that you go to yoga class- keep it up as long as you can. Your doctors may not realize how many appointments you have. Speak up for yourself, they might surprise you with how cooperative they can be- if not, get new doctors.