Saturday, September 17, 2016

Time to do some catching up!

     Still have problems with my sniffer, as in I can't really smell anything.  I made an appointment with an ENT, my primary Dr's suggestion. It really didn't do much and I got the impression that he didn't care a whole lot either by the end of it all.  He checked me out, said he couldn't see anything physically that me be causing the smelling problems.  Some inflammation but not a lot.  Stuck one of those cameras up both nostrils. While not very painful, it was pretty uncomfortable to say the least and I highly don't recommend it unless really necessary.Told me he hadn't heard of Sjogren's  but was interested in doing some research on the topic since he has never come across this before, which made me feel good. Like he was interested in my problems and really wanted to help. He was honest, and said he could prescribe some antibiotics in case there was something going on and some prednisone for the inflammation and see what happens.  But he said he didn't think surgery would be an option for he saw no reason for it. So beyond the prednisone until he did more research that was all he could do. So I went and got me prescriptions filled.
     Prednisone is absolutely amazing.  I loved it.  It made me feel like a human again for the first time in a long time.  No pain, so much energy, so focused.  I couldn't believe it.  I got caught up on everything in my pending files at work.  I told my husband if I had another week like this, I could actually get the house painted like I've been wanting to for the last few years.  But alas it was just a short burst and by the time we left for vacation the end of June I was down to my last dose. But it didn't take too long for everything to come bouncing back.  While on vacation the vasculitis in my legs flared up extremely bad.  I had sore shoulders and arms but for some reason my legs were fine, which I found odd since we did a ton of hiking.  My sense of smell never came back though.
     At my follow up the ENT asked how everything was, and admitted to me that he forgot about the research he was going to do so he had no answers for me.  I felt so let down.  At any rate he said since it was going on almost a year-if I reached the 12 month period and have not had any changes then most likely my nerves where damaged beyond repair and it would be permanent.  Any damage to nerves in the sinuses will regenerate eventually by 12 months.  And for me that was really only 3 months away.  So with that, he basically washed his hands of me.  He ordered another CT scan to see if the drugs had cleared up the inflammation.  He told me there was a smell test that could be done if I wanted to go somewhere in the city.  It was basically these tubes or something that you smell to see if you could identify the odors.  He doesn't have them b/c they are expensive to buy (Well you just got me for 2 visits that did nothing, I guess that's still not enough $).  All the test does though was verify that you can't smell, it won't help you get it back There's no procedure, medicine or anything out there that can be bring it back he said.  At this point though, I'd just be freaking happy with knowing what the hell caused the issue to begin with, but I guess I'm never going to know that.  None of the Dr's seem to give a crap about quality of life.  He said my CT scan showed some improvement of the inflammation, and if I had any more sinus trouble or infections to give his office a call.  Yeah right, I'll be sure to do that jackass.  If I have to see someone for a sinus infection I'll be sure to fork over a copay for a specialist who is so eager to help.
     The only good thing out of the visit to the ENT was the prednisone.  Made me feel pretty decent for a while and I told my rheumatologist about it at my last appointment in August.  He told me when I start having really bad flare ups to please send him a message or call the office.  Cuz honestly I wasn't telling him during the flare up, I would just unload on him all that had happened since my last appointment.  He told me if it got real bad that I could get another small dose of prednisone.  (I know the dangers of taking it too often, believe me.  I would only do it if I couldn't walk or get out of bed.) But for the first time since being diagnosed April 2015 my ESR numbers fell in a normal range!!  That HAD to be the effect of the prednisone.  That test measures the sedimentation rate, it's a way to measure the amount of inflammation in the body.  For the most part I have felt less tired, it's easier to wake up in the morning.  But I still have various pains in my shoulders and arms lately.  So I guess something is still going on even though my inflammation is down.  But you gotta take it as it comes.  Right now I'm just trying to make the most out of feeling good while I have it each day.