So lets continue this shit show…
So after I leave the doctor I am stuck in bumper to bumper traffic which makes my anxiety peak. Finally get home when I call the number on the paper my neurologist office gave me. To it being a number not in service. Thinking I may have made a mistake I call a few more times. I then call Nero to inform them that I cant call and schedule the first dose observation appointment because the number is not in service. Of course they don’t answer, I leave a message. Then start researching to see if I can find the number to schedule this dam appointment.
After searching a while I find out the gilenya go program is know longer even an program anymore. So not only have they been sending my paperwork to the pharmacy “wrong place” but not to a program that no longer exists! How is it that I’am the one having to research and find this out? How come my neurologist doesn’t Know this? Should he not be aware of a program that I went to 3 years ago is know longer anything! And that his staff are not doing there dam job! So I call and leave another message saying were there trying to send me is not open so what the heck is the next process?
I got no call from them the next week nor did my medication get delivered! I left several more messages with no response! So now I’m irritated shit I been irritated I’m so done with these people not doing there job. There is no reason I should’ve ever been off my medication! There’s no reason I should be playing the middle man between Nero and pharmacy for almost three dam months! How is it this entire dam time the doctors office has not answered the phone not once! For them to then blame it on me and my phone!
I want to get a new Nero in all honesty I really want to. But that in itself is a hassle I would have to wait to see my primary doctor and ask him to refer me then wait for referral. Then call and get an appointment with new Nero which is normally months out. Then go over my entire history were they’ll then have to do there own set of tests. Before ever getting me on the actual medication, but I do think its heading there!
So I end up having to call the pharmacy yet again, and being on the phone for more than an hour. On hold mostly! Asked to speak to the manager cuz I had officially had it! She then gives me this shit about they need a code to run the new generic prescription. That she will have to see if they can run it with old code. Or see if my insurance will even cover this new prescription or if I will have to go to a new pharmacy. That she will call me back that all I can do is wait, REALLY!
Then I finally get threw to Nero and she says “I got your messages, I didn’t know they went out of service I’ve been searching everywhere even Google and cant find nothing.” “So I don’t know were you can even go. I’ve been so lost I just wanted to give up” Then the other girl suggested to reach out to gilenya directly. To were she found a place but they would get back to her. She then said ” That she would call me as soon as she knew something.” First off how are you going to say you got my messages but yet never made it a point to call me to inform me of anything! Secondly how in the hell you going to say you wanted to give up are you FREAKIN KIDDING ME! I wanted to give up I WANT TO GIVE UP but yet I can’t. I’am the one that has been doing her dam job but yet she wants to give up!
I am now going out on this day 1/30/24 with both the pharmacy and nero’s office both telling they would call me back. Yet they have not called me back it once in the past 64 days!
Current Symptoms
- PAIN CONSTANT
- Loss Of Balance
- Tremors My Whole Body
- Hand Weakness, Pain, Shakiness & Tremors
- Weakness
- Fatigue
- PAIN PAIN PAIN
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I’m a registered nurse in the USA, and it’s my opinion that the whole medical industry is going down the tubes. Every year, we have problems with my husband’s respiratory medications. It’s stressful, unnecessary, and shows a real lack of caring for patients.
I couldn’t agree with you more and you being a nurse and then also having your spouse that needs medication you can see first hand the complete struggle it is.
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I’m so sorry your going through this
Thank you it really sucks
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