Dysautonomia (Autonomic Dysfunction) Community
Been Awhile
About This Community:

This patient support community is for discussions relating to Dysautonomia (Autonomic Dysfunction) including: Postural orthostatic tachycardia syndrome (POTS), neurocardiogenic syncope, mitral valve prolapse dysautonomia, pure autonomic failure, autonomic instability and others.

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Been Awhile

Hey everyone. Sorry I haven't checked in lately. I hope you are all doing ok. Hope the holidays weren't too hard on you.  I made it through ok. Took a trip this past weekend and it really wore me out. I'm sleeping alot right now.

Little update on me: I had knee surgery in October. still trying to recoup (still have quite a bit of pain and swelling). Lupus still appears to be flaring.  I'm looking for a new rheumy. Mine doesn't seem to be wanting to help me. I quit taking some of the meds to see how it would affect me. I can't tell that they were helping.

I am trying to get a dr that will give me mtx weekly. I've gotten it on my visits to rheumy about every 2 months and seems to help, but doesn't last long.....if any of you have or are taking it, then you know.

So far I've been diagnosed with SLE, sjogrens, raynauds, and anemia, along with gastritis that appears to me to be turning into crohn's.

I hope to stay in touch with you. Let me know how you all are doing.

steph
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Sounds like you have a lot to juggle.  Hope you can find a new rheumy soon.  I'm having the same problem with my cardiologist.  He is not thrilled about treating POTS.  I can tell he gets frustrated at the complexities and challenges.

Take care,
Laura

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Steph,

Great to hear from you!  Good you got to take a trip, even if it means extra sleepy time spent recuperating.  It's important to still get out and do things we really want to do, right?

I'm glad you made it through your surgery, but I imagine the recovery must be rough with all the health issues you are facing.  I will be keeping you in my thoughts.  

What is it with these docs that are either losing interest in us (or never had it to begin with)?  I seem to be seeing a trend of that over the past couple of months with members of our community having strained relationships with their primary diagnosis docs for that reason ... not sure if I'm just noticing it more or if there's really an uptick for some reason?  Maybe even doctors get restless with their own version of "cabin fever" in the winter months.

I know how tough SLE (and all the comorbid diagnoses that can trail along for a ride) can be ... I have a beloved family member with it.  Please PM me anytime you just need a shoulder to lean on.  Chronic illness is chronic illness is chronic illness.  We're all trudging down this path together, for better or worse.  

Big HUGS!!!
Heiferly.
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Thanks y'all.

Heiferly---I don't know what is going on, but like you I have noticed more and more people having trouble with their drs.

I'm doing pretty good after the surgery, but I'm still having a lot of pain and swelling. can't twist or run, stuff like that.

Maybe it will all get better soon for everyone.

Big Hugs back to ya'll.
Stephanie
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Heiferly
Columbus, OH