Stressed Out to the Max

Update Time:

Make sure to read the previous posts about me being in the hospital and coming on home IVs to fully understand these next updates. Okay, whew where to start. First of all, I made my first VLOG today. So I'd encourage you to watch that to really understand what I have been dealing with last night/ today...

Here is the video:


Incase it doesn't load correctly you can go to my youtube channel HERE & watch it.

Sorry about the bad camera angles...I don't have a laptop with video capability. So I had to choose between a desktop in my bedroom or my phone. So I made this lil masterpiece with my phone. I'm sure Ill get the hang of the camera angles as I do more.

Normally, I wouldn't post a whole blog with my video (defeats the purpose). However, this is my first VLOG and I have some updates on the medical situation I talk about in the video. My nurse came to do my afternoon med, since I don't feel capable of keeping on top of everything and its just a lot to deal with right now. After she left I had a voicemail from the pharmacist saying to call her back. I was hoping for news that they would give me the elipse balls, she told me the insurance wouldn't originally pay for ellipse balls only for gravity. However, they will pay for the ellipse balls start with the next batch on Friday. I said okay, then I need to set up a nurse to come to set up/ do the IV meds. She informed me I was on my own, that the nurse already came once to show me and now I'm capable... I said I know but mixxing it and getting back into the bag is difficult for me, and keeping up with it is too much. She said "its easy, you are fully capable." I said, but what if I'm not, either physically or mentally, who are you to say I'm able to do the IV med. She replied saying she could send the nurse and the bill to me, I'd be responsbile for it. I said " I can't afford that and if I have to use an IV med method I've never done before, how can I be denied a nurse. Also, what if I don't get the med mixed up completely or air runs through, if I run it too fast, what I burn my vein up?" She laughed at me. Yep, flippin laughed at me and said " Oh you cant do that..hahaha (side note: I knew I couldn't burn up my vein, but I was trying to make a point. I shouldn't have to do these myself if I'm not comfortable) I cut off her laughing abruptly and said very upset (borderline almost crying- my steriods are making me weepy) " Well, thank you for laughing at me and making me feel dumb, I guess I will have to try to do it and hope I just do it right and not mess anything up. I will be talking to my doctor. Good day" I proceeded to complain to Doc and I will be doing a customer complaint once I'm off IV meds and no longer needing their service. Also, I called my insurance to double check and apparently visits that are billed and are solely for IV administration is covered and doesn't count towards the limit. So the Flippin rude lady was wrong. I'm too much of a coward to call her back. But I have the reference number and the names of people I spoke to, all of which will be put in my compaint.

On top of that, my Cayston hit a bump. Insurance is taking their sweet time getting me the documents I need and the pharmacy (a different one that approved my Cayston ) is now saying my approval is contingent on those papers.... So I'm done with IVs meds in 10 days and I hope I have Cayston by then.

I'm just so worn out and stressed, I told Doc I just want to stop doing the meds and give up. I'm about ready to marry Andrew tomorrow at the courthouse to switch to his insurance. His is a lot better than my dad's current insurance.  Once we get married I lose my secondary insurance though, so we are looking at paying our entire deductable within a month or two of us getting married, plus I have more copays. Let's not even discuss specialty meds coverage without a secondary insurance. But that's for another time. I'll get more into the harships marriage (the legal aspects) has for someone with CF soon. I'm not ready to get into all that. I have enough I'm dealing with right now.

I'm happy I'm home, I love that Doc is switching my meds to be more aggressive and really feels it will have an impact on my lungs. But I'm just beyond stressed out with everything. I feel like no matter what I do, the insurance won't be satisfied until I'm dead.

I'm very much looking forward to Friday and my ellipse balls! Plus, I get to do  a few more wedding appointments this weekend (including caterer). And no matter how frustrating life can get, I love it too much to throw in the towel.

Don't worry guys :-) I'm sure once this is all over, everything will be fine.

I can't wait til Andrew gets off work tonight, it's been the longest day ever!