Thursday, August 18, 2016

What Rheumatology Lab Results? Sjrogren's? Yes or no???

My Iv boxes have never had a green sticker on it before that says, "Contains medications." Woah...(hope I got the right stuff because I do not have any medications in Iv form... Dun dun dun! ) lets open it up and see 👀 
We good!
Just plain ole IVS with some electrolytes! Yum! And I got a "new" well my pumps are rented because they break or malfunction.  This pump could be ten years old for all I know! Anyways that's just how insurance companies do! Fingers crossed this pump is a good guy! I would like to send out a special thanks to my home health company for sending me a completely dead pump that now needs charging and is inturupting my very important window of feed rate opportunity! Let's charge! And wait! (With these pumps they won't work until they get so much battery charged, I am pretty sure if it gets to 1bar it freaks out literally beeps non stop even when you plug it I in...and you have a total of 4bars and it works even while plugged in... Unless it's down to 1bar... Then you just have to charge it up and wait) 
***RHEUMATOLOGY LAB RESULTS FINALLY CAME*** the lab results from rheum prospective said no inflammation in my blood (a few different tests for blood inflammation) I did have a positive ANA (most likely a false positive as I always go back and forth in the past) No Lupus, No autoantibodies (that I have previously had... I did at the same time have both SSA & SSB autoantibodies a few years back along with a positive ANA, despite a history of back and forth false or positive ANA tests. It's not often someone will test for BOTH SSA & SSB autoantibodies at the same exact time. So I was slapped with diagnosis of Sjögren's Syndrome. which was not incorrect) but as time has gone on... Along with all sorts of medical issues that are complex... They kind of are going with: as of now unless something changes NO SJOGRENS SYNDROME DIAGNOSIS YAYY!!! (so I've been undiagnosed? But they also said its not a for sure. They can never be sure with these things and I can come back in a year to retest)! But I tell you if I get those crazy fevers with no explanations that landed me into hospitals for months again I am going back for testing!  HOWEVER my KIDNEYS where all kinds of crazy! (I did start kidney meds and am see a kidney specialist... So my BUN and CREATIN were low... Kidney function was normal however (good)! my sodium was HIGH what!? (I have POTS, so we get low sodium and are to replace so two things are probably happening A. The kidney medication is suppose makes my kidneys use sodium instead of waste. Which my kidneys do waste my sodium and not use it correctly (my POTS but it's super crazy even for a POTSie) or B. I am over correcting with sodium replacement!  (POTS) or I guess there is a C. It could be both things together! I see my POTS specialist tomorrow so we will for sure get this sodium lined out! He does do lab work for my hydration levels every other week so he keeps an eye on me. Since I am on Iv fluids along with Magnesium and Potassium via IV! (I also put in yet another call to another specialist ... because well my kidney doc needs to know what's going on!)  Especially since I am planning on hopefully quitting Iv fluids and  using  my j tube for fluids (which means upping my kidney meds to be able to do that and keep hydrated, & my blood volume up to normalish)... The plan for months (that has been delayed)  My neurologist  is over my Iv hydration orders. He wasn't getting the message correctly about changing hydration orders with the new addition to upping fludrocortizone...so he was like why does my patient (me) want two seperate bags of Iv fluids?? It's he same in one bag... Mass confusion. I needed it seperate to wean down...But he didn't get messages correctly! He was not a happy doctor when he found out! And he fixed it! Timing was bad it was right before surgery and you don't go messing with things during those times...So I see him tomorrow with high hopes to maybe makes some life changing changes to my care!? (Better for me and works we hope) knock on wood! Those changes would be to up the kidney meds to go from 2liters fluids per day to one liter fluid per day. And not in IV form then we'd put the potassium and 1 liter with sodium through the j tube as well... However we have no magnesium plan that can not be through the gi tract for sure! (We are in high hopes of loosing Iv fluids daily!!)  Today is my restful day. I have had one appointment everyday this week!! Tomorrow I have  a down and back trip to the valley! (Gotta see neuro) Rough day for me. I also need to prepare a bag now that I am thinking about the round trip.lol. Being a Tubie and chronically ill is like having a baby gotta have a big bag full ofsupplies and of course a few just in case things! (Like the kitchen sink, I am like Marry Poppins)  Wish me luck!! I need it #nomoreIVSplease (please pray too) Love-Chelle