Now I’ve Gone and Done it Again….

I finally got approved to transfer teams at my mental health clinic earlier this month.  I went in and met my case manager (who is Really Cool), Gisa, and my new med provider, Elizabeth, who also seemed competent and focused and able to understand me.  Today I went to meet my new RN.  The prior one was unable to draw my blood, so she refused to ever attempt it again, which meant I have been going to a free standing lab for the last year instead of to my RN there at the the clinic.  I had to fight with my former med provider for a lab order requisition, then I had to fight over it being a covered one by my insurance, when it all coulda, shoulda, woulda been done right there at the clinic.  So I was happy to have a new nurse, so that I hopefully won’t have to go thru all that bs everytime I need labs done.  So, today’s visit with the RN was for my yearly update.  The appointment went fine, and I was so pleased about it, until the very end when she mentions to me that I don’t need to come in next month for labs, since I did them at the start of February.  What????  I’m supposed to get my lithium and electrolytes done every 3 months, since my lithium causes a rare kidney disease in me, that causes me to have elevated potassium levels, which if they get too high, can be deadly.  So I tell her that (we’ve already talked about in the update), and say that is why I need to have them drawn every 3 months.  She says she ‘will talk to the med provider and we’ll see’.  I am now getting panicked, and I say, ‘I don’t think you understand.  It has to be this way.  There is no other option.” She says ‘will talk to the med provider and we’ll see’.  She also adds on, ‘we only check lithium levels every 6 months.  So we don’t need to check yours next month.”  And I say, even more urgently, more panicked, ‘ but I am NOT your NORMAL person on lithium!  I am a HIGH RISK person on lithium, with a lithium induced kidney disease!  It must be monitored more frequently or my potassium could get very high and we wouldn’t know it, and I COULD die!  This happened last summer, and if we hadn’t been doing labs every 3 months, I wouldn’t have known soon enough, and I could have died!  As it was, I had to take 3 days worth of a med that is normally only administered in a hospital setting, and have emergency labs done to see if it worked enough, or if I would have had to go into the hospital to get it down.”  She looks at me and nods, and says evenly, ‘the doctor and I will talk about it, and we’ll see….” My appointment time was up, the next person had been called back, so I had to go.  But I still don’t know if I will be getting my lithium and potassium checked every 3 months or not.  And now, I think because I got so worried, so anxious about it and so adamant to the RN, that I have just succeeded in making my new team think I am crazy, and that they must be careful to not ‘upset’ me, so they will start treating me with kid gloves and just go ahead and do whatever without my agreement, without even asking.  This is the whole reason I switched teams in the first place–to find a team that would treat me like an actual person, and not baby me only to go behind my back and do what they think is right.  So, now I think I have ruined my new team right off the bat.  And now, I’m not sure I’ll be taken seriously by any of them, much less get my labs done every 3 months.  I hope I’m wrong.  I hope I haven’t made them see me as a patient they can’t talk to for fear of making her ‘crazy’ or ‘lose control’ and instead just do what they want.  I hope the med provider will see I am not your ordinary, average, low risk person on lithium who only gets drawn every 6 months.  I hope she sees I am a unique, high risk patient on lithium who needs drawn more often.  But right now, I feel like I just have messed everything up, before I even got to get to know them, and I am just another crazy person they won’t listen to or get agreement from on what to do for me. This is just like me–always sabotaging myself with people I need so I can get the care I need.