Those of you who know me know hope and I aren’t exactly best friends. Hope seems like a friend, until that’s all you have and it is taken away. Anyone who tells you “there is always hope” has never had even that last important thing torn away from them.

Having said all that, sometimes hope is a good thing.

I’ve been living in constant pain for around 10 years which, believe it or not, isn’t the worst thing about my back falling apart on me. The worse part has been dealing with the “opioid epidemic” and the drug war. Without going into really lengthy explanations, it’s a complete misery to try to live as comfortably as possible with the way things currently stand in the US. I’ve had to go on medications and have procedures done that not only did I not want to do, but in some cases had negative consequences. I’ve been treated like a criminal for no reason, I’ve run out of medication (a lot) and suffered horrible anxiety several times a month. Keep in mind I’ve never done anything wrong, I didn’t even do anything to make my back fall apart, this is just what it’s like living in the pain management system currently. Plus it should be mentioned that the way the law is currently, you really can’t survive without breaking it. It’s just written and handled in ways that contradict each other. The general excuse when a new edict is handed out is “as long as you do everything right it’ll be fine”, but that simply is not true.

Believe it or not, that’s a short explanation, and this post isn’t exactly about all that.

For the last 6 months or so I’ve been getting ready to have another nuerostim trial. I’ve done it in the past and hated it, but basically if I want to keep getting the medication that makes life livable, I have to do whatever test, injection or trial my doctor suggests. My doctor isn’t being a jerk, she basically has no choice but to continue to try things so I can stop taking opioids. Basically nuerostim is where they shove some wires into your spine and send bits of power through it that make you feel as if someone plugged a vibrator into your spine. But not in a fun way. The theory is that doing this sort of tricks the brain into thinking you don’t have pain. Some of the 6 months is my insurance, some is my doctor being cautious, some is bad timing and some is the fact my doctor is only in town once every 3 months. She travels around teaching how to do various injections, this really is her passion.

Well, last week I had an appointment that was supposed to lead to that trial, only it didn’t, instead, it lead to me coming back later in the week. I could try to cough up all the particulars, but since I only partially understand I’m fairly sure I wouldn’t do an amazing job of helping you understand. The bottom line is she wanted me to try a wholly different medication, it’s an opioid derivative because everything is, but it isn’t regulated the same way EVERYTHING else is. Basically it’s a medication that is usually used to get people off heroin (but isn’t methadone), but they discovered it actually helped some people with their pain. It apparently works on different receptors and isn’t really abuse able, that last fact is why it isn’t regulated the same way other pain meds are.

I want that. SO MUCH. You’d think what I’d want most is pain relief, and yeah, of course I want that, but as long as the new stuff works at least as well as the old stuff, I’m game. They can call this medication in! I haven’t had a single pain medication in 10 years that that was true of. I know that sounds like something small, but it isn’t. Once a month I HAVE to go to my doctors to get my script, then I have to take it to the pharmacy, which is one more stress factor because they can decide to no longer sell to me. Which has happened to me in the past. Or they could be out, which would mean I would run out. Yes, that has also happened to me, and since I’m not allowed to ‘hoard’ my meds or have any backup... Are you starting to see what I mean about the system not working? We are so worried about people who made the choice to do something stupid, that we are ignoring the lives of people who have no choice.

Thanks for reading this far!

So a couple of days after my appointment I found myself going back to the doctor’s office, having taken no pain meds for around 20 hours. Weirdly in order for this stuff to work, you have to be in at least mild withdrawal. Fun!

I take half a sublingual strip and just…wait. Yes, of course, I brought stuff to do. Slowly the feeling of withdrawal fades, I take the other half of the strip. Slowly after a total of 1 and 1/2 strips, my pain starts to fade. I’m sitting there, afraid it won’t work, and afraid that it will. I know, that makes little sense, but if it does work, what does that mean?! It’s hard to explain to you why I felt a little bit of fear at the idea that this medication would work. I think mainly I was afraid that if it worked that hope would flicker into such a bright light that should the medication working once be a fluke, that hope dying would kill some part of me.

My “normal” for the last 10 years is for me to wake up at around a 7 on the 1-10 pain scale chart. Yes, I mean it. Each number on those charts has a very specific description of how that level affects you. I know that sounds horrible, it’s just the truth. I woke up in pain after my first surgery, and it has never once dropped below a low 6, even on hardcore morphine after my spine was fused. Actually, the only thing that made me survive that was Lamaze, so shout out to the woman I ended up coaching through birth. Lol

By the time I left that office, I was at a 4. FOUR. I left elated but terrified it would be all in my head, that I wanted it so badly I had tricked myself. Concerning as I left without my old pain pills that could have been awful. I kept mentally poking at what I was feeling, almost confused and not believing. You have to understand that NOTHING has worked. At all. I’ve had so many spine injections I’ve lost count, enough physical therapy that I actually made friends with my therapist. Seriously she’s amazing. Done nuerostim, an injection that very literally turned me into one large hive between my chest and upper thighs that surprised my doctor enough that she took pictures of it. Three back surgeries that ended in my last two discs being fused. So many different medications that I’ve pretty much forgotten half of them, medications I not only didn’t want but told my doctor (different doc) I was afraid I’d get addicted because of my family history. His response? “It happens”. IT FUCKING HAPPENS?! Really?

None of it worked. You know when you hear that something works on 98% of people? I’m the 2%. I’m always the 2%.

So when my pain dropped to a 4 I couldn’t help but mentally poke at it. My doctor said “Now do you see why I wanted you to try this” and was so excited that she hugged me, and she so is not that kind of person. Honestly she’s so intense she kind of scares me and I know she’s a pain to work with, but I know she really has my best interests in mind. But when you have a doctor like that who mostly has success, they almost take it personally when they can’t fix you. My guess is my case bothered her, no matter what we do and try it didn’t work, she couldn’t make me feel better at all. The finally something worked.

It’s been a weird week of adjusting to a new medication, I go through weird bouts of exhaustion and various stuff that I’m adjusting to. But, yes, the 4 stayed despite my almost terror that it wouldn’t. I kept expecting it to not work, I just knew that I wanted it to bad and I couldn’t keep from hoping not matter what I told myself. Now, this isn’t a magic “pill”, I’m not saying I’m living in a perfect 4 all the time. It’s like all other medication, if I do to much, my pain spikes, I wake up in pain. It’s up and down like it always has been. But sometimes things a good, like 2-3 good. It doesn’t last long, and I almost don’t notice it when it happens, but those moments are golden.

Even if most of the time I’m no better than 5. Hell, even if I went back to a 7, unless for some reason I can’t, I want to keep this medication. The relief of being on something that is less regulated is worth more than I can possibly express. Man, I really hope I get to keep this medication, that it continues to be less regulated than anything else, and that it keeps working. To quote one one of the best movies.

I hope.