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Sjogrens Topics => Living With Sjogren's => Topic started by: Skyddle27 on September 08, 2008, 09:33:25 PM

Title: Ups, downs, and more downs
Post by: Skyddle27 on September 08, 2008, 09:33:25 PM
Hey everyone!
     I know it has been a while since I posted. Life has been crazy. A lot of my time was spent trying to find a new Dr and to no avail  :(  I actually got the Summer 2008 list of primary care providers for my health plan and spent days on the phone. Absolutely EVERY number on that list that was within driving distance is no longer excepting new patients, does not take my insurance anymore, or has moved location and I couldn't reach them at all! I had one ER trip about 2 months ago for an unbearable headache that turned out to be a tooth abscess (waited out all weekend in pain to go to family Dr and he didn't feel like showing up for work). The ER Dr was amazing. His wife and brother-in-law both have Sjogren's. He spent over an hour talking to me about it. I don't think the family doctor has spent that much time with me in the couple years I have been seeing him. Even though I still have not been diagnosed... ER Doc agreed that I needed to get my official diagnosis soon. He couldn't get any of the test done in the ER because my insurance would not have paid for it since it wasn't needed for an emergency of a bad tooth. He gave me several referrals but none of them took my insurance either.
     As fed up with as I have been with my current Dr, I haven't been rushing to the car everyday, or every week for that matter, to ride 30mins to go sit in his office for another hour, just to hear him say that he doesn't know what is wrong with me. Well, with school starting, and kids being the little petri dishes that they are, we had to go down there today for a follow up on a cold and ear infection. I went ahead and signed myself in as well. I was horrified to find out that I have lost even more weight (this time last year I was around 125, I am 106 today). By the end of my visit with the Dr, I was accused of having bulimia, just being depressed to the point that it makes me sick, and just having gas!!!! Yes because with my phobia of vomiting, my horrible teeth, and aching joints (just to name a few), are explained by any of those three things. On a good note, my doctor admitted that he needs to send me to see a specialist! A Rheumy doesn't seem to be in my near future yet. He wants to go the route of a gastroenterologist for my stomach problems, but it is a start. I go back in tomorrow for another blood panel to check liver function and what not and I know he wants me to have a CT scan with contrast. Not quite 3 steps forward 2 steps back, more of a 200 forward 199 back... but I still get that step forward  :)
- Rhiannon
Title: Re: Ups, downs, and more downs
Post by: Patze on September 09, 2008, 06:38:23 AM
Hi Rhiannon,

Wow, you seem to have a tiger by the tail!  I'm sorry that you're feeling so poorly, I know that you need all the strength now that you can get (not to mention all garbage the little petri dishes are running around spreading! ;); that is a great analogy!).

Is there teaching hospital near you?  Are you near or can you drive to a major medical facility?  Is there any way that you can switch insurance companies?  Or can you pick up another one too?

I don't know about the doctor your seeing, he's one for the books!  Whew, I sure hope that you can find a new doctor soon!  This one...nope, nothing I can say about him that wouldn't get me censured on this board. 

Please hang in there and let us know how you're doing, okay?

Take care -

Patze
Title: Re: Ups, downs, and more downs
Post by: Scottietottie on September 09, 2008, 07:39:59 AM
Hi Rhiannon  :)

I'm sorry about your fruitless quest for a new doctor. That must be incredibly frustrating.

I'm glad you doc has referred you onto a gastroenterologist. Sometimes specialists can refer to specialists so he's be worth sounding out - or he could ask your 'dumb' doc to refer you.

Hope you feel a bit better soon. Like your description of kids!

Take care - Scottie  :)
Title: Re: Ups, downs, and more downs
Post by: JannaLee on September 09, 2008, 02:22:59 PM
Oh Rhi,

I would get to that gastro guy pronto and mention (with a straight face) how glad you are that you don't need a rheumatologist and that you are delighted you don't have any chance of having an autoimmune problem.

Then tell him you are excited for him to fix your tummy so you can quit being sick, once and for all.  Let him know your primary doc has (in effect) promised this to you.

I have found reverse psychology works real well on Doctors.  It seems the minute I say "there is no need of further investigation" they always insist on it!

If, by chance the gastro guy takes up your cause, I would make a personal appeal and ask him to take over your case for a while.

Anyhoo...this is just me venting a little frustration over such miserably inadequate medical care for you.  The weight loss alone is cause for increased concern!  And we all remember you've been seen before about your tummy and weight loss (a couple months ago?) why is nothing changed?!  Why hasn't your primary gotten to the bottom of it by now?!

If I were your mom I would take that guy out behind the woodshed and get this all straightened out!

Janna


Title: Re: Ups, downs, and more downs
Post by: pudmott on September 09, 2008, 04:24:47 PM
I love it when you're feisty janna!!!!!!

Will you be my mum???????????



Pud :D
Title: Re: Ups, downs, and more downs
Post by: JannaLee on September 09, 2008, 04:53:34 PM
Thanks Puddin!  I would love to!
Title: Re: Ups, downs, and more downs
Post by: susanep on September 09, 2008, 06:28:51 PM
Rhiannon
Bless your heart. You have to go through all this and you feel so bad. I am so sorry to hear this. I will pray for you to find someone that will indeed help you. No one should have to endure this kind of treatment. Don't give up, just keep on keeping on. Take care of you first, and don't worry about what doctor gets their feelings hurt. They charge enough to cover their hurt feelings.

susanep :(
Title: Re: Ups, downs, and more downs
Post by: Skyddle27 on September 10, 2008, 12:37:56 AM
Thanks everyone! I am looking into switching to a different health plan. I also just found out that the UT Health Science Center here in San Antonio actually has a Sjogren's research center!!  :D I live in the Medical Center here in SA. One of the many reasons that I was so stumped when I couldn't find a Dr! I will see how my appointment goes in 2 weeks (maybe try a little of that reverse psych) and in the mean time I am going to browse through the UT health system for PCP's and I will call them all if I have to. I have never been big on that health system before but I only really dealt with their ER's and I think 36 hours is an awful long time to wait for any emergency. I am very excited to hear about this center, though. And, it is 3 miles away at most. I now have a specific goal for my health care and it is a little nice to have a sense of where to go from here. I will try my best to update at least semi-frequently  8)
Much love!
-Rhiannon
Title: Re: Ups, downs, and more downs
Post by: pudmott on September 10, 2008, 01:19:33 AM
That is such good news Rhiannon. I hope all goes well at the new place. Keep us posted

pud
Title: Re: Ups, downs, and more downs
Post by: Scottietottie on September 10, 2008, 09:33:04 AM
Hi Rhiannon  :)

Lets hope those 'downs' are now heading for 'ups'!!   That all sounds a lot more positive.  :)

Take care - Scottie  :)