Hey guys. Hope everyone is doing well. Before reading, please be advised that if anyone is triggered by the mention of narcotics, please do not continue to read.

As for me, I’m so angry I could cry. I have been in the hospital for the last two days. I have been experiencing some pretty disturbing episodes at home plus the suspicion of seizures have ultimately led me here. I arrived at the emergency room at around 7pm maybe 2 nights ago. I have no sense of time since I’ve been here. Anyway, it was 2:30 am before I was finally able to be assigned a room. Since it was so late, my medication list couldn’t be confirmed with my regular doctors at the clinic I go to. So all the doctors could do at the hospital was go by their last known medication list which contained some narcotics which I have taken in the past, but after genetic testing, it was discovered that my liver does not metabolize narcotics. According to Merckmanuals.com, A chronic liver disorder can make people more sensitive to the effects of certain drugs even when the disorder does not increase the amount of drug in the body. For example, if people with a liver disorder take even small doses of opioid pain relievers (such as morphine) or sedatives (such as lorazepam), mental function may deteriorate, and they may become confused, disoriented, and less alert. Mental function deteriorates, probably because the liver disorder makes the brain more sensitive to the effects of these drugs.

I went into all this detail because, since I started this blog, I told myself that I would return to social media to start building a membership to the site. So what does my liver have to do with social media? Well, for the reasons just stated, I decided to post a tweet of the events that occurred after being admitted. First, it’s important to mention that I really dislike social media. I have accounts everywhere but am not very active because from what I can recall years ago, there are so many great people to talk to as well as a bunch of miserable individuals who will never be happy unless everyone else is miserable, and my welcome back to social media today reminded me of why I left in the first place.

Sorry guys, I’m all over the place, but because of everything I’ve been through in my life, I find it increasingly difficult to control my anger and unfortunately, today I let it get the best of me. At this very moment, my thoughts are still erratic and all over the place. But back to the hospital…. I had not taken my evening meds or painkillers since arriving in the hospital because they don’t allow you to take your own meds when you are admitted. Every time I mentioned I was in pain, they’d come back with oxycodone which I kept refusing. I always carry a ziplock with the meds I consider life or death and that includes my asthma pump, my long-term steroids because after doing some research I discovered that sudden withdrawal from steroids can lead to death. To continue, I also had Wellbutrin, Nucynta. Xanax and Zolpidem. Everything else was left at home. Upon being admitted, my meds were taken. Nucynta, which is a narcotic, has been the first medication ever that has given me enough relief from my pain to function after years and years of so much excruciating pain that I no longer cared whether I lived or died. Thank God for Nucynta. At last I had some relief. I still hyper-metabolize but I am so thankful for the bit of relief I do get. Anyway, at 5:30am, I still wasn’t given any meds, i was in an extreme amount of pain and I didn’t have my asthma pump or steroids which I considered the most important. The pain I would have probably been able to deal with a little longer since I’ve known nothing but pain for the last 8 years. So I started to worry. I asked the nurse to get me the pump and the Medrol to set my mind at ease and I informed him of my issue with narcotics not working for me and specifically having to have Nucynta. Hours pass and I was given my meds for Lupus, RA, Stiff Man Syndrome, but still no asthma pump, no steroids and no Nucynta. A few minutes later, they came back with Ritalin, 30mg of Oxycodone and 30mg of Morphine. To anyone else, these dosages are extreme but these were the meds I took for years before finally discovering the problem with my liver. Since I hadn’t been to the hospital in a while, these were the last known meds they had on file and still had no confirmation from my clinic about anything else. And I don’t like taking anything I’m not prescribed because meds I’ve taken in the past did more harm than good affecting my mental well-being. Enter the hugest panic / anxiety attack I ever had. For over an hour after it started, I was still crying out in pain, I couldn’t breathe, I was distraught, angry and becoming aggressive. Now finally the nurses and doctors are paying attention to me. Now I’m being held down, an oxygen mask being placed on my face, narcotics been pumped into my IV and multiple nurses trying to calm me down. Oh, I didn’t even mention that ever since I got here, I’ve been asking for a cane because I have a difficult time walking due to Stiff Man Syndrome. That is a very rare disease that affects only 1 in a million but according to my new Twitter friend I’m not allowed to have any rare diseases that she has and the whole story about me being forced to take narcotics was a lie because whatever hospitals she goes to does not do that, therefore my hospital didn’t either. And so, I was called a liar on Twitter. To be fair, I worded it differently due to the limited space twitter gives you to say what you want to say, but I’ll copy and paste it along with the answer I received.

3/29/19, 5:14 PM
At hospital for the past 2 days, had my asthma pump confiscated and they still won’t let me have my steroids I use to prevent lupus flares. But yet every 4 hours they’re trying to shove narcotics down my throat which I keep telling them my liver can’t metabolize. Really? #lupus

I see now how the words I chose were in poor taste and I was going to say I couldn’t think straight because of the pain, but there is no excuse. Looking back, I see why I triggered some people and I can’t apologize enough about it but for hours afterwards, even after I left it alone she kept harassing me. The following are her responses:

3/30/19, 11:40 AM
⁦‪@RiaRobi1026‬⁩ I’m not ignorant, I just don’t believe you. If you are being offered pain relief just be thankful because there are millions in this country that are suffering until they die from cardiac arrest from lack of pain relief. No hospital is shoving narcotics down anyone’s throat.

(Please note, after giving it much consideration, I decided not to add the rest of her messages since it’s not fair to post hers and not mine because even though she started it, I allowed myself to be taken out of character and allowed it to continue, and I’m much better than that.)

Of course, I responded after the first comment and thought that would be that but she had to have the last word. Poor thing. But she basically caused me to have a mental breakdown on Twitter. I just went to see if there was any remainder of that meltdown, but after I calmed down, I went and erased it but I’m pretty sure it will resurface as I’m sure someone has captured it for posterity. I’d actually really like to see it again as I don’t recall the incident itself but I will honestly tell you everything I recall to the best of my ability. I think it really accelerated very quickly as I was already upset at being called a liar and I believe I called her dumb and ignorant. She made one more comment and I went off. I went as far as threatening to have her fired if she worked in the healthcare field. And then the hate mail starts coming in. Even after I finally calmed down and let it go she kept going and going and poking the sleeping bear. The pic enclosed is only a sampling. Trust me, it was a lot. But then I was accused of causing a trigger for people who couldn’t get narcotics, accused of being mean and a bully and they were right. So when I tried to apologize to the people I offended, I was blocked. So then others were now publicly embarrassing me and not once, NOT ONCE, did anybody ever call out the person who started it all.

Will I be going back to twitter? Probably not. I had a huge meltdown which led to the worst public embarrassment ever. But maybe it was a blessing in disguise. Maybe I’m not meant to go back on social media. And to accuse a very sick woman of being a liar and whatever other nonsense she said, to me is like Wow. Just Wow. I don’t need the aggravation. It’s a shame because I really am a good person. I’d give anyone the shirt off my back. And for 20 years of my life, my job involved serving the public. I cared for people and did everything I could to help them. And now, I’m not even a semblance of the person I used to be. I’m angry, I panic now, I get anxious, for a while I did the why me thing, slowly I eliminated family and friends. And now all I have left, all I love, are my children and this website. The creation of this site gave me so much happiness, because even though there are not a lot of people here, this is my new baby. Something to care for and about. Something to cultivate and grow. A place that will eventually allow me to love again and be loved by other Lupies and Spoonies who could also use a friend.

Once again, I apologize if I was too long-winded or shared too much. But this is a blog, a place where not only I, but anyone can journal the good, the bad, and the ugly. I intentionally added an area for your own blogs because as I said from the beginning, this is not only my place but our place. But this is where I’ve decided to chronicle my life so that it will always be around for my children and anyone who wants to, is welcome to do the same.

 

As always, I would love to hear your comments so let me know how you would have handled the situation.  Also keep in mind that the comment section is still all the way at the bottom of the page so please scroll down until you get tired, and that’s where the comment section will be.  Lol.  Sorry guys, will try and have it fixed ASAP.

 

Good night my beautiful butterflies, good night.

 

Ria Robi

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