June Newsletter (2023)

I wanted to reach out and let everyone know how we're doing, since we've been in Chicago for 10 months now and things have finally settled down enough to write a real update about how things stand at the moment.

A little background: We were living in Texas when the Supreme Court overturned Roe v. Wade in June 2022. In theory this decision should not have affected me personally; I'm not pregnant or trying to get pregnant, I'm medically infertile, and I'm a stone's throw away from menopause. But doctors and pharmacies in affected states (like Texas) have been forced to stop prescribing critical pain medications because those medications *could* be used in a home-abortion, and the doctors and pharmacists involved *could* face serious jail time and loss of license for being accessories, even unknowingly. There have been several news stories over this which I won't link here, but the pain medication stoppage has affected many chronic pain patients, even ones who don't have the medical capability to get pregnant.

Most of you know that I have had a lifelong struggle with scoliosis and chronic back pain. I've had two spinal fusion surgeries, both of which have made my situation worse, and I haven't known a pain-free day since I was a child. I require a cane in order to walk and I spend most of my days resting in bed. I'm lucky to have a work-from-home job that allows me to have flexible hours and which has medical insurance so I can see pain doctors and they can prescribe mitigating medications in order to improve my quality of life. I will be on opioid medication until I die, and I am very grateful that these medications exist in order to let me live, laugh, and love.

WELL. That was a long way to say that I need those medications in order to function, and suddenly I couldn't get them in Texas anymore. We had to quickly scramble to get to a blue state where abortion wasn't illegal, and therefore my pain medications weren't restricted as possible abortion-vectors. We ended up moving in August to Chicago and it has been an adventure. We have a beautiful house that has flooded with sewage once already (it shouldn't happen again, though!) and have learned this week that it needs a new roof, whoops! So there have been some ups and downs, but we're happily working through them all. The cats are ecstatic and love their new window view, and Kissmate is starting school at the University of Illinois Chicago (UIC) in the fall. We're considered "the Cat House" on our block and in the mornings when children walk to school we can hear them calling up "hi kitties!" as they walk by. It's adorable.

What is most exciting, though, is that I have a new pain doctor. He's... Well, you wouldn't LIKE him, probably, haha. He's very brusque and blunt and not easy to talk to. If you've ever seen the television show HOUSE M.D., he's a lot like that guy. But he's very passionate about pain mitigation. He's furious at how badly he feels my back situation and overall pain management has been "butchered" up to this point, and it's nice to find a doctor who actually cares about my situation and isn't just checking a box to get me in and out of the office. But he's limited in how much he can prescribe me, because of the whole War on Opioids that is going on right now (sigh) and that's been a source of fear and concern for me--how will I live if my medications get restricted or cut off?

Because of these ongoing threats to prescribed pain relief, he's been talking to me about non-prescription alternatives for my situation. There's a procedure he does called a "medial branch block" where he's able to poke needles into my back and locate the spinal nerves which report pain to the brain. You see, MY nerves are highly agitated all the time because of the metal that was screwed into my spine during my surgeries, so the nerves are ALWAYS reporting painpainpain to the brain, even though there's nothing I can do to "calm" the situation down--I can't just reach in and take the metal out. So my doctor wants to turn those nerves OFF for a while. He pokes around to find the nerves, then numbs them for a few days in order to test that he has the right culprits. When we're sure which nerves are the problem, he can actually BURN the nerves for a few months. The burning lasts anywhere from 6 to 18 months, and during that time the nerves can't report pain to the brain. Once the nerves have repaired themselves from the burning, you have to go back in and do it again. So the good news is that it isn't permanent (if something goes wrong) but the bad news is that it isn't permanent (if everything goes right).

This isn't an easy process, which is probably why my Texas pain doctor never pushed me to try it. (If I could just stick with my pain medication forever, I would.) There are four numbing appointments to test that he has the right nerves, and these appointments are AGONY. I have been through some interesting pain spikes in my lifetime, and these numbing appointments take the cake! He has to poke a bunch of spinal nerves with a needle over and over and ask, "Does THIS hurt? Does THIS hurt?" until we find the nerve that makes me scream. Fun!! Then the actual burning appointment has to be done TWICE because medical insurance is ridiculous and wants to force me to be sedated and opened up TWICE so that they can separate the Left Side and the Right Side as two different treatments they can try to deny. FUN.

BUT. I am sitting here typing this after my third test and... I don't feel any back pain. My nerves are still screaming at me because it takes them about 24 hours to calm down after they've been needled, but the constant regular back pain that I've felt for as long as I can remember... is just gone. And it's been consistently like this for the tests we've had so far: I have one day of agony because my nerves are all jiggled up and angry, and then I get to experience this pleasant heavenly numbness that I can't describe as anything but the absence of pain. After the first test I actually cried four days after the procedure when the pain came back, because it was just so NICE to live without pain for the first time ever. Once I finish all these tests and can do the full nerve-burn procedure, I should be able to feel that numbness for MONTHS instead of days. I cannot WAIT.

My burning procedures are scheduled for the last week of July and the first week of August, almost a full year since we moved here. I won't be Superman after this, to be clear. My back doesn't feel pain when these nerves are numbed, but I still get tired and my spine feels "heavy" if I start to overdo my limits, and then I have to rest. I'll still need to walk with a cane, and I'll still need to park in my handicap parking spot. (I am getting a handicapped state ID card today! Dealing with the Chicago DMV has been a dream! It's so efficient and polite that I feel like I'm in another reality! It's like THE GOOD PLACE, if you've seen that show!) But I'll be able to live without constant pain, and I can't tell you how exciting that is. I'm so hopeful and happy, and I never even knew this procedure existed. What a miracle this has been!

I know this has been A Lot, but it was important to me that I catch everyone up on my medical situation now that I have some solid Good News to share. I hope everyone is doing well and I'm sending my love.