No Indian food… not even Real Food Cafe happenin’ here.
The eye doc hadn’t sent the results of the tests she had done to Rheumy yet. My eye appointment was two weeks ago. Seriously? I told her that I had an appointment coming up with Rheumy and could she please, please, please send over the results as oh so much hinged on them. Why does that take more than 2 weeks?! It takes me approximately 10 seconds to write and send an email! Without those results, Rheumy couldn’t say if I do or don’t have Sjogren’s. What he did say is that I definitely don’t have scleroderma which I didn’t even know was in the differential but was good to know.
So now what?
Rehumy said I have the symptoms of primary Sjogren’s Syndrome: dry eyes, dry mouth, joint pain... So… use my eye drops and if the eyes get worse go on Restasis. Chew sugar-free gum, use Biotene toothpaste and mouthwash, up my fluids and if it gets worse try a med that has side effects such as excessive sweating and diarrhea. [NTY!] For the joint pain, take Motrin and if it gets worse maybe we will try something else. So really, he says, it doesn’t matter if I do or don’t have it because he would treat it the same. But that when he does get the results from the eye doc he will let me know and he wants to see me in 6 months.
Ok I get that the treatment is the same and I may just have to deal with the fact that I choke on carrots, popcorn, and hamburger buns. But a diagnosis of Sjogren’s would also mean a higher risk of lymphoma. As a cancer survivor I already have an increased risk so anything adding even a percentage point higher is a big deal. Also, I like to know if I should freak out anytime my lymph nodes swell up. Well, I guess I do that anyway but…
I’m tired of seeing doctors every 6 months, spending my hard earned cash and PTO. Right now I'm rotating between three I see every 6 months, one I see yearly, and another one I see when I get sick. That’s about 4 too many IMHO. Just give me some answers and let me figure out the rest. I’m done with this nonsense.
Lots of prayers heading your way. It's frustrating for me just reading about it. I can't imagine how you handle it all, every day.
ReplyDeleteYou are one of the strongest people I know!! Keep fighting the battle. You are winning - even when it feels like you are not.
I am right there with Shannon on this one, hun. Hang in there! You truly are your best advocate and unfortunately, you know your body better than the doctors and sometimes it takes YOU holding the cards to play the next hand and tell THEM what needs to happen. Stay strong - and don't let them push anything under the rug. My doctor didn't want to run the bloodwork on me after getting the third blood clot but I insisted - turns out I tested positive and I blew him out of his socks when that came back. I wanted to shout "I TOLD YOU SO!" but refrained ... ;0) It's unfortunate that this is the medical world, but I don't think I have to tell you that ... <3 You're strong - SO strong! Stronger than I think I could be - hang in there!!! I'm praying for you, hun!
ReplyDeleteLymphoma- been there, done that, wouldn't recommend it! I hope the Sjogren's dx is not true, however it's probably even worse not knowing for sure if you have it or not. Is there a definitive test?
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