This guy yesterday looked at my tests and said "well, 99.9% you have RA. We will take an xray to look for joint damage, redo the blood test just in case, give you" scary "meds" and send you on your way. And that was pretty much it. No talk about why my joints aren't swollen or red, why the pain is not symmetrical, why x-rays show nothing even though I have had pain for 6 months, is there any chance of short term med use in hopes of remission, what about steroids which I could keep nursing with, why can't I remember the children's birthdates or my wedding anniversary or that the bathwater is running when I am standing right there...when I asked about side effects I was told "it's all in the brochure." Never mind that he wants me to stop nursing immediately so I can take a cancer drug?!?! It's all in the brochure Sarah you idiot! Oh yea and PS the meds can take 3 months to actually do anything about the pain you are supposed to stop nursing the baby for. But if you want you can sign up for a trial of even more hardcore meds and we will pay all the bills.
I don't know y'all. I am kind of speechless about all of this.
I am trying to get an Igenex lyme test to rule out lyme disease, but that's hard too.
I have an appointment with another rheumatologist at the end of May. But I feel torn about all of this. Maybe balls to the wall is what one really one wants with a disease like this? But I can't imagine that 40 years of those kinds of medicines is not going to mean a certain early death or something. But maybe not taking them is going to mean being crippled.
Seriously. What the fuck does a person do in this position? (I tried to find email addresses for those of you that said you had RA the last time I mentioned this with no luck. If that's you, email me?)
Do.not.have.a.clue.what.to.do. and my gut instinct is failing here me here.
Anyway. Since the Iowa trip was a fail I went to a local flea on Sunday morning. In the cold rain again. Pouring rain.
Totally worth it:
And a big pile of vintage playskool puzzles for Sammi (my puzzle master!).
Today I get the joy of the dentist, but hopefully I will back tomorrow with the quilts. Man, what a week I get to have this week. LOL
I've been thinking of you and hoping that you would get answers. I don't have any knowledge re: RA, but I would (1) seek a second opinion for sure and (2) do a lyme disease test, which it sounds like you are already going to do. I am sending you lots of positive vibes and hope that you get more answers and COMPASSION from other doctors. Brochures my tush.
ReplyDeleteSarah,
ReplyDeleteA bunch of this does not add up. In your heart, you know that. It is time to find a doctor who will listen to you. It is easy to research diseases and think OMG, so instead, research doctors and see what people say about them. You may have already done that. For some time, docs have been saying that my mom had anemia due to lack of food (we knew she was eating), but we found a fabulous hematologist who did ALL the tests and came up with the right diagnosis. She is dynamic and resourceful. Yes, mom has to stay on meds forever; no, she is not going to die tomorrow. POINT-it worked out when we found a doctor who listened. Is there an online forum to discuss docs in your area, even 45 minutes to an hour away? I know it is hard with 3 kids to travel, but in the long run, everyone will be happier if you find the right doc for you.
Hugs! and more hugs!
I was totally wondering if it's Lyme disease! Mary Ellen (http://maryellephotography.blogspot.com/) was told she had MS and it ends up she actually has Lyme. Keep after them, Sarah. Praying for answers and soon!! <3
ReplyDeleteLaurie
Looking at the CDC statistics, you should also get tested for ehrlichiosis. Lyme seems pretty rare in Missouri, but is a hotspot for ehrlichiosis, whose symptoms can mimic Lyme and which can cause all sorts of immune disregulation, which might then look like an autoimmune disorder (hmmm, like RA perhaps?). Of course, you've travelled to Lyme heavy areas (Chicagoland, specifically), so get tested for that as well. Plus, having had Lyme, I know that the little buggers can lay dormant in your system only to be activated by another environmental trigger. I've had three active cases of Lyme, but only two traced to bites. The third seems to have been induced by other events.
ReplyDeleteI think that the best doctors and medical professionals will always make you think, "hmm, that was easy!" even if they are diagnosing you with terminal cancer. Keep your head up until the second appointment and don't stop nursing to take drugs you aren't sold on. May 22 isn't that far off, and if two weeks of non-treatment were so important then the docs would have you in their office tomorrow instead of scheduling you for an appointment so far in advance. Good luck!
I have no medical advice (other than get more opinions) but a lot of hope and positive thoughts directed your way.
ReplyDelete