Twenty Weeks Ago


Happy New Year’s Eve! These past days were full of holiday happenings around here and lots of good family time. I was feeling crafty and spent some time on a few projects that have been sitting around waiting to be finished. There was some more medicine stuff to deal with and even though there are so many steps things at least keep moving forward. Shannon and I have also been talking some big future plans.

This holiday seemed to have a little bit of extra family warmth and magic floating through the air. Everyone in the house was feeling excited and getting into the holiday spirit; the house was filled with lots of laughter, baking, and good time together as a family. Our household celebrates the Solstice or Yule, the return of the sun a few days before Christmas. It is the time of year where we start to get more light each day instead of less. We wake up and play Here Comes the Sun by the Beatles, open stockings first and then presents. We have a late brunch and dinner is usually some kind of warm comfort food meal. Sometimes we wake up at sunrise to play the song but this year we all slept in because we all had late nights taking care of little holiday elf tasks. Our holiday celebration has become like a little pot luck of traditions. We have been able to share various family traditions, incorporate ones that we heard about or tried and liked, as well as create our own. Shannon and Valhalla have an ornament making tradition that they invited me to partake in our first holiday together, so every holiday we make ornaments for each other and this year Valhalla made me the coolest ornament. She made me a globe from the pages of Alice In Wonderland. One of the traditions that I brought to the household from my Mom’s family is sticking a clementine or an orange into the toe of the stocking to give it a good shape. Another one of my family traditions is getting together at my Aunt’s on Christmas day to spend time with friends and family. There was good food, a poker tournament, and poetry reading in the evening.

Being on the trip made my hands itchy to create stuff. I spent a little bit of time woodworking this past week. My skill level is still very low and I only attempt carving periodically so instead I worked on some basic walking sticks. There is a walking stick that my Dad made from a curling vine that got snapped during the festival season so I glued it back together. I’m not sure that it will stand up to hard hikes anymore but it will still function pretty well for light walks. A little over a year ago I was able to get some forest maple when I stayed at a friend’s cabin in the Adirondacks and I was able to make him a pair of claves from it and have been saving a piece for a walking stick. It is tall but light to carry and sturdy to lean on. The piece was super simple with just adding a cane tip on the bottom because the bark is so lovely and smooth I didn’t want to take it off. I was also able to get some good forge time in this week. I was able to finish a pair of tongs that I have been working on since I first got the forge and that felt really good to finish up a long term project before the end of the year. It shows me that I am capable of bringing an idea into reality and seeing through long term projects.

There were more phone calls this week to get the nurse training set up. It wasn’t just one call to be able to set up the appointment though. Phone calls needed to happen with several places. One was to CVS Specialty Pharmacy to get a different self injection device because the one I was sent first was for the brand name version but in the end it was the generic version of the medication that I ended up with. A call needed to happen with MS Advocacy which is an organization that deals specifically with glatiramer acetate, the generic version of copaxone, they put out all kinds of resources health and safety info, apps to track your injections, a 24 hour nurse line, and nurse training to do the self injections. I had to talk to two folks there and they were two separate calls, one to let them know I wanted the nurse training and then someone called me back from the place that coordinates with nurses. Then I needed to have a phone call with the specific nurse that was going to train me. It’s more than a little frustrating in moments that so many steps need to happen to get a simple thing accomplished. I wanted to get nurse training for the self injections and to get that accomplished I had to make or take six phone calls with four different organizations/people. Thankfully I have a wife that is willing to help out with some of these types of calls and is there providing support and entertainment for me when I have to sit on hold.

This whole process with getting prescribed the medicine, all the following up I had to do to get it delivered, and having to give myself the injection has felt like a game of red light, green light with my emotions and emotional processing. It was really easy to keep saying “well I don’t have to worry about it right now because the medication isn’t here yet. Do I need to start prepping myself now? Oh not yet, but soon?” Then all of a sudden the moment was happening on Saturday night. The nurse came over and showed me how to set up the self injector, put the syringe in, and give myself the injection. I got to practice on a foam block first and then I had to give myself the first injection. In my head I really was prepared for it to be a breeze. It was a small gauge needle, I’m not afraid of shots, people kept saying how easy it was going to be, and I felt really prepared after watching a video and going through the training so I was like “I got this.” Before the injection was even finished I was already wondering why it was hurting so much. I injected myself in one of the recommended spots on the back of my arm and the pain slowly spread up to my shoulder and halfway down my forearm. It was more of a dull pain while my arm was still but it would ripple and spread when I would try to move my arm. I was in a lot more pain than I expected and I had trouble taking apart and wiping down the injection device, Shannon had to help me finish and get it put away. The nurse was not reassuring when she said she had never seen a patient react like I was to the injection and couldn’t offer any suggestions as to why I might be having such a painful reactions. Shannon asked her if it could be related to how thin I am or if we didn’t give enough time to let the temperature of the medication adjust to room temperature because medication is stored in the refrigerator. Thankfully the pain did not last throughout the evening but I was prepared for an easier experience. I am going to try a few different things with the injections to find out what works best for me. Again I feel so lucky and very grateful to have a wife that is supportive because it makes navigating all of this stuff just a little bit easier.

Shannon and I launched our business at the beginning of the year and since then we have learned a lot about what works for us and what doesn’t. We talked about what we need to adapt for the coming year with those lessons in mind. The web store is going to be moving to Etsy. We want to change the web host for the website and we want to reorganize our Patreon. We both talked about wanting to teach more outside of events and to try to schedule more workshops. Not too many big changes to the overall business plan but a couple of months ago we decided that this would be our last winter in this house and we are starting to have more serious conversations about what our options are. There are still so many things to consider and make decisions about though. We don’t know if we want to be on the road full time or find a new home base. There is also the question of whether or not I want to give up access to the healthcare I have here in MD right now. Before we make any big decisions Shannon and I are planning to take a vacation, yes a short trip where we are not working an odd job, vending, or teaching as well as a longer road trip to check out some new places in the country. We haven’t done any travel lately that isn’t related to work so some time away and some time off should feel revitalizing and rejuvenating. We are going into 2019 with travel and adventure, family love and support, and a drive to grow our business.