That time finally came. The time to start the medication for treating my MS. I have to say that starting this treatment has not been an easy or straightforward experience at all. There was a mix up with codes and the prescription itself. There were the numerous phone calls back and forth with different places. It took six extra weeks on top of the standard month wait to just even get the medication. The nurse training for administering the injections was incomplete and inadequate. The treatment experience itself just overall has sucked for me so far but thankfully I get a short break from some of the day-to-day drudgery with a vacation.
I have taken my first, second, third, and forth dose of this medication now. I can say that hearing about how easy it was going to be from so many people did not set me up with more realistic expectations of how the injection would feel. The first dose I gave myself during the nurse training visit. The nurse was pretty good about walking me through using the self injection device (Whisperject) but when it came to walking me through a self injection without the device she was giving me conflicting info from the info sheet that came with the meds, you know that thin white piece of paper that comes with every medication. The medication info describes giving a subcutaneous injection with a pinching but she was telling me to just insert the needle at the injection site without pinching. So I got trained to use the Whisperject but was not properly trained to give myself the injection without the device.
Then it came time to give myself the first injection. I said each step out loud as I did it and was feeling fairly confident as I pressed on the trigger to the device. The nurse said I did all the steps perfectly and checked the injection site and said everything looked good. The next few moments felt kind of like the moment Coyote realizes there is no longer ground beneath his feet. These painful sensations started spreading from the injection site just seconds after the injection. A burning sensation spread to a small area and an achy sensation spread from the injection site on the back of my arm up into my shoulder and down into my forearm. As I am describing the pain to the nurse and to Shannon the nurse had no ideas as to why it might be so painful. It was very painful to move my arm, I was in tears, and the nurse made my wipe down the injection device without really addressing the state I was in. The only thing she really said was that ice or heat can be helpful after the injection. The nurse was just not helpful or encouraging at all after that injection and kept moving forward business as usual. I was able to move my arm later in the evening without pain, I even drummed with some buddies, but the rest of the evening felt like walking around in a mild state of shock because I was so unprepared for what had just happened.
The second injection I was really hesitant because of how much the first one hurt but we made extra sure the dose was room temperature this time and that there was an ice pack handy. Because I was hesitant I jerked my hand a little bit during the injection and possibly double stuck myself. The injection still hurt but the intense pain did not last as long or as intensely as the first one. There was still a burning sensation that started a second or two after the injection that spreads to about the size of a closed fist. I tried to walk it off to see if that would help because I did the injection in my thigh but that was a mistake. I had trouble walking because of the achy sensation throughout my thigh that got more intense when I would put weight on that leg. There was some swelling that occurred at the site of injection that hadn’t occurred after the first injection. It was a bit concerning but I was willing to chalk it up to user error.
The third time I still had that hesitation but I worked really hard, and was super lucky to have Shannon’s support, to work through the anxiety in the moment to have a calmer experience. I sang a grounding song and I sang a song to Ogun. There was no user error this time, the medication was room temperature, and there were still burning and achy sensations. I was warned from many sources that a few people experience a side effect that is a panic attack like reaction that doesn’t last longer than twenty minutes but I wasn’t really prepared for the kinds of side effects that involve pain or just this general sick feeling that happens during the injection and for several minutes afterward. This time I did the shot in my right thigh and there was still a bit of swelling at the injection site. I couldn’t put weight on my leg for at least thirty minutes and there was still the burning and achy sensation.
For the forth injection we phoned a friend. Shannon reached out to a nurse we both know and set up a dinner date. We were able to go visit some friends, have an awesome dinner with them, and get some good hang out time with our two families. I got to drum with one of my buddies and I got walked through the self injection techniques for a subcutaneous injection without a device. Even though as a nurse she couldn’t speak to my medication in particular she was able to speak to me about the class of drugs it is in and some general things about that. She was able to help me formulate some more directed questions to ask my doctor. She was also able to speak to some more energetic and spiritual components about my experience that I wasn’t going to talk about with the random nurse sent to my house. She held space for me to work through the emotions that come up and she just helped normalize the situation overall. It was the first time giving myself the injection outside of my own home so I was feeling a bit more vulnerable. I thought about giving myself the injection without the device but I am scared that it will become painful while I am plunging and I won’t finish the action. The injection itself was a bit easier this time, I found out that my stomach is a better injection site than my thighs, but there were still the painful burning and achy sensations.
Shannon and I are noticing that a lot of emotions are coming out around the time of my injections; before, during, and after. I am not reacting to the needle and it’s not the pain of the needle that is getting me it is the pain of the medication going into my body and feeling how it spreads. The needle ain’t nothing but the sensations are really unpleasant. It’s not something I want to have to put myself through three times a week for the rest of my life. This whole treatment was described to me as the least invasive but that is not the experience I am having. I have been really frustrated with this whole healthcare process. The amount of time I am having to spend on the phone is ridiculous and aggravating but I can’t ignore the calls or nothing would move forward. There also isn’t just one place or one person I can talk to because there are so many different components. People tell me different things so the information I am getting is not consistent and that it confusing. I’m getting hit with double emotional duet because I have to manage and work through my own personal emotion about this MS diagnosis and how it is changing my life but also the feelings that come up in navigating a broken healthcare system. We have the technology and resources to be giving everyone in this country adequate healthcare, why aren’t we?
Sometime during the holiday season my Aunt gave me a poke about using her beach house sometime over the winter to just get away. So Shannon and I are taking a vacation. Like our first real vacation. We travel a decent amount but the travel is often attached to work in some kind of way and this time we are taking days off work and just getting out of town. We both worked long hours in December and just need some time where we can just be with out the pressure of having to get everything on the to-do list done. This is the first trip that is just for us that we have taken since we’ve been married; we aren’t combining it with a work trip and this isn’t visiting friends out of town. I am very much looking forward to this kind of time with my wife.