I recently went on a trip to Arizona for some medical tourism. Many of you have been asking me how it went. Thank you for asking, and thank you for being so patient with my response.
The truth is, it went really well, then really hard, then great, then horrible, and I’m still processing everything…
On the way down, I had pain medication in my system. I take enteric cannabis capsules for pain. My pain medication is illegal at the federal level in the United States. In fact, it is considered a Schedule 1 drug, comparable to heroin in their eyes. So it doesn’t matter that my destination state of Arizona has legal medical cannabis, I was out of luck for my main pain medication. Because I was able to take my cannabis capsules before the airport, the pat down I was subjected to on the way down was mostly bearable. I used a wheelchair for the majority of this trip since the distances were too long for me with my cane. I did not get up from my wheelchair, so that meant a pat down. (We’ll get to the legality and procedures for airport security and the TSA in a bit.) In fact, the agent patting me down said her sister-in-law has CRPS. She was very nice, and asked me constantly throughout the search if I was OK, or if I needed a break. The airport experience on the way down was pretty good, and seemed to be easier than I thought it would be. So that was the part of the trip that went really well.
The treatment I went down to Arizona to get was a ketamine infusion, at the Ketamine Wellness Center. Ketamine is a NDMA receptor antagonist, which is used as an anesthetic in many different applications including field surgery, and pediatric surgery. The scientific evidence to support ketamine as a treatment for CRPS is considered weak, with more research and high quality clinical trials needed. For there to be any supporting evidence at all I think shows promise, which is what Connolly, Prager, and Harden (2015) said in their review. The idea is that ketamine administered intravenously to a patient will allow some of the overactive pain signals to reset, and therefore reduce the pain. There are varying protocols at the private clinics that offer ketamine treatments, with some clinics doing 3-5 infusions in a row, to some clinics doing 6 infusions total in two weeks. The clinic I went to decided for me that 5 infusions from Monday to Friday would be appropriate.
The start of the week of ketamine infusions was rough, and the part of my trip I referred to above as “really hard”. The first infusion I had on Monday morning seemed fine, until I started vomiting after. I was fine during the infusion as far as nausea was concerned, and it was an intense sort of anesthetic experience but my body felt fine. I ended up vomiting all night that first day, it was exhausting. The second day, we added a steroid to help with the nausea, and that took care of it. I was so happy I wasn’t vomiting!! Who wouldn’t be, right?
As the week of infusions continued on, the clinic continued to be aggressive in my dosing. Since the nausea was taken care of, and I wasn’t having any other bad or uncomfortable side effects I was able to tolerate the dosage. At one point during the week, my pain was down to 5/10. It hasn’t been down to a 5 since 2015. The weather there was lovely, and the warmth definitely helped me feel good.
Many people have asked what it felt like. Well, it’s an anesthetic and even though the infusions are a sub-anesthetic dose, it basically felt like waking up from anesthesia! Sort of like swimming into consciousness.
Now getting into the title of this post, the airport situation on the way home…this is when I hit a 10 and my pain was out of control. We flew home on the Saturday, the day after my week of ketamine infusions were done. The airport was incredibly busy, with people everywhere not paying attention and rushing like herds of idiots. That was just the beginning.
Apparently as a person with a disability, horrifying TSA experiences are par for the course. This is incredibly disheartening to read. For example, you can read Kaitlyn O’Leary’s story here. According to the Reflex Sympathetic Dystrophy Syndrome of America (RSDSA), the TSA has a hotline for travelers with disabilities trying to navigate the system. I’ll definitely be using that in the future.
I did not do much research before flying. I thought it would be sufficient to look up the regulations on the official TSA website, and calmly and politely assert my rights at the airport. Sure. According to the TSA, “if you can neither stand nor walk, you will undergo a pat-down procedure while seated”. So that was the option I chose traveling down there. On the way back, I decided that being touched would be far worse than standing and walking through one of their full-body machines. My body was already on high alert being in a busy airport with people running around nearly bumping into my wheelchair. The TSA says this about that option for screening: “If you are able to stand with your arms above your head five to seven seconds without support, you may undergo screening through advanced imaging technology or the walk-through metal detector if you are able to walk through without support.” They also have a cane that you are able to use, so really if you can use their cane you can exercise this option.
I was already in a bit of a way at this point of the screening. I was tearing up a bit, but I wasn’t nauseous from pain, crying loudly or noticeably, screaming, or defensively snapping at people to watch out for me/ not to touch me. See this foreshadowing? Yeah. Through the process of standing up, walking into the full-body scanner, holding my hands up for the required scan time, and walking out of the full-body scanner back into my wheelchair, I was doing all of those things. Screaming, crying, and being that person I never want to be in an airport- someone who is freaking out. So then it is decided that my slippers are suspect. Even though according to the TSA, “you are not required to remove your shoes if you have disabilities and medical conditions,” I was subject to additional screening which was going to require someone swabbing my slipper with it on my foot. At that point, that type of stimulus was going to be devastating on top of the already out of control state my body was in. I asked for a supervisor so I could see if there was any alternative to the two choices (remove my slipper causing pain, or have it swabbed on my foot causing more pain). I was really hoping that there was some other option. They had swabbed my right slipper, so I was holding out for the supervisor deciding that was enough. Nope. There was no other option apparently, so I ended up ripping off my slipper in a frustrated state to get on with it.
I hated being so messed up in the airport. Besides the fact that being at a 10 on the pain scale (yes, out of 10) is a horrifying thing nobody should ever have to deal with, having a freak out in an airport is an embarrassing, and humiliating experience. All those elements together, combined with people bumping into my chair, and the constant staring was like a shit sundae with turd cherries on top. Being made to feel like you’re an overreacting pain of a human is awful. I can’t imagine anybody would ever want to feel like that, because I certainly don’t want to ever again.
Going forward, it seems as though there are two choices when flying with a condition like CRPS. I can either fully submit and allow them to do whatever screening measures regardless of whether they are overreaching their authority, or I can come prepared with every last document that may help me assert my rights to the TSA regardless of their right to decide against letting me travel. I don’t want to have to fight to have my rights respected by a representative of a regulatory agency. I don’t want to make a scene asserting the agency’s own rules and regulations. I don’t want to make the representatives of the agency feel like their job is in danger because of a complaint from someone with different needs like me. I know that none of the TSA agents were trying to hurt me, or took pleasure in hurting me when doing their job. I suspect some of them are just so concerned with keeping their jobs they can’t risk giving a person like me the benefit of the doubt of a light search/ screening procedure. I’m not sure what I’m going to do the next time I travel. I don’t want to become someone who makes TSA agents have a preconceived notion that people like me are difficult or something, but I also don’t want to have my rights denied because I’m scared of asserting them. If you have dealt with these situations before please let me know your personal strategies. It may help me tune my own. The experience flying home is the part of the trip I’m still very much processing.
Overall, my pain has been up a bit since coming home. I am trying to believe it’s a flare from the intensity of the trip and the experience coming home. I will probably have to report back on the final verdict of whether the infusions helped. So far, I believe they have helped but I am still trying to figure out if the trip back sort of counteracted the positive effects of the treatment. As I may have mentioned a couple times now, it was intense and I’m still trying to process everything.
I hope this post gives you some information you didn’t know, a new perspective, or at least an interesting read. I truly appreciate all the support I’ve had throughout these last years, and especially during this past trip to Arizona. If you feel like my successes are your successes, then it’s probably because of the love you have passed on to me. Thank you. I hope to share many more successes and triumphs in the future.
peace&twerks ❤ Zara