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The Choices I Have To Make With RSD



Early this week I kept waking myself up screaming in pain,this affects everyone in the house because now I’m disrupting their sleep,their quality of life so I went to my doctor. With uneasiness I asked him to put me back on a high dose gabapentin, it’s an anticonvulsant and the last timeI took it I went off of it because of the side effects. Medications effects everyone in different ways, so if you’re someone that is looking to go onto a high dose of this don’t take my story as a deterrent because lots of people don’t have my issues. I just took my night time dose so soon I will be Zombie Carrie so I will try to stay coherent and get this over quickly.  


This is why I went off this stupid drug, my daughter was 12 and she asks if she can go to a rave with her friend in the city and I say sure, she says I have to buy tickets online so I hand her my credit card. There is no way in hell I would have ever let her goto a rave at 12 let alone go downtown at night. So an hour later when the drug was wearing off I told my husband I had the craziest dream that I let Eilish buy tickets for a rave. He looks at me like I’m nuts and says you did 'that wasn’t a dream'. She was pretty mad at me when I told she has to be crazy if she thinks I’d actually let her go to a rave. Try explaining to a moody teenager full of angst is, well I’d rather have a root canal. The next day I went off gabapentin.


This winter I’ve had one seizure and a few times when I’ve fainted and lost time, once when the maids were scheduled to come and I didn’thear the doorbell, which really sucked because I had a friend coming over andnow my house is a disaster, ugh. Since no one was here and I didn’t know what time it happened I have no clue how long I was out but I think it was just minutes if it were longer I’m sure Kiaya would have eaten the couch out of pure anxiety.  My dogs tend to lick my face and paw at me trying to wake me up, they really are great. Scarlet knows when I’m about to go into a flare or faint and if she is by me she will push me if I ’m standing or just lay her head on me if I’m sitting or laying down. She won’t leave me until it’s over with her head on my lap. Aren’t dogs amazing,she wasn’t trained do that it was just natural and she’s just a rescue dog not a fancy breeding.


With all of this going on I’d rather be a zombie that can't tell if I’m dreaming or I’m awake. On the plus side it makes the day go by faster with me catatonic for a few hours just starring at the wall or whatever.I’m not screaming in pain so my family’s life is better and my daughter isturning 20 and at Florida State so she’s not here and I won’t be handing her my credit card to buy a cruise for her spring break. The teens that are here aremy step kids and they don’t ask me to buy them things…..hey if you guys arereading this don’t get any funny ideas.

Withall this scrambling on opiates or Jeff Sessions talk on taking an aspirin and powering through I’d like to take a second to remind you that there are people that haveto take opiates on a daily basis to survive the day. I’m concerned with an over correction which would ruin my life and ultimately make me one of 98% thatcommit suicide with my disease (RSD). Opiates work by slowing the CNS, my pain is due to a broken nerve signalin my brain that over reacts sending severe pain signals, so an aspirin won’t doa thing for me.  I do not get a euphoricfeeling, in fact it is as if I took an aspirin. It only takes the edge off but never completely takes the pain away,nothing will. My doctor does foresee a day that he will no longer be able to prescribe them, he is a pain specialist not a GP.  I believe we are headed to a disaster if evenspecialist for pain management are under pressure to stop prescribing opioids to  patients that are in desperate need of them. To give you an idea of the type of pain I am talking about it, I have the second most painful disease in the world. It is more painful than having your finger cut off with no medication, it is more painful than giving birth with an epidermal and this pain is every single day for 8 years now.  I am asking that in your fight to end the opioid  crisis that you do so responsibly but still allow pain specialists the ability to treat their patients humanly and to the best of their ability