Twenty Two – Twenty Four Weeks Ago

by: Keiden

Vacation was great! It was so nice to get some time with Shannon out of the house that wasn’t a work trip or errands. I have still been struggling with starting this medication and it has been a lot harder for me than I thought it would be. It is more than just physical sensations, there are big emotions that are coming up and out in moments. There was another appointment, this time with a physician assistant, that went really well but still no big answers and more tests ordered. The whole process just feels choppy and creates a bumpier ride for me.

We spent our vacation down at Chincoteague Island and because I’ve been going there since I was very young, it has been really nice to introduce Shannon to different favorites of mine each time we go. We had an ice cream date at The Creamery and an awesome lunch date at Don’s Seafood. Our time down there was so quiet, it is a beach town so in the winter it feels so empty. There were no sirens or shrill screams of school children. There were no helicopters or people yelling at their phones or at each other. It was just quiet and beautiful to watch the water. Spending time in such a quiet and peaceful environment really showed us how much we need to move away from the hustle and bustle of the city. As much as we enjoyed the quiet we also delighted in making music together. We have both been picking up instruments and playing more than we used to.

Back home from vacation we jumped right back into the swing of life. We spent another two nights away from home and got some good friend time, movie time, and kitten time. There was also some painting work we did while we were there. I made use of some full moon time and reworked a few of my sacred and magical necklaces into one piece. Shannon and I also howled at the moon and did a house cleanse. I was also able to squeeze some forge time in these past few weeks. I worked on making us some wall hooks for us to hang coats in the house, I got two done and a third in process. Making these wall hooks has been really fun and got me thinking about all the different things I could make for our home.

MS Advocate followed up on the nurse training session. After I described the painful injections I was put on the phone with nurse there, she made me promise her I would talk to my doctor about my shot reactions first thing in the morning. They also reached out to the Mylan Medical Info Team to get one of their nurses to call and follow up with me. I was told these nurses know everything there is to know about the medication. Nurse from Mylan called and I told her about my reactions, she couldn’t tell me any more than the nurse from MS Advocate could and that I should follow up with my personal healthcare team. She wants me to call back and let them know if the doctors discontinue the glatiramir acetate treatment for me. I sent the same message to the doctor and the physicians assistant letting them know about my reactions to the shots and asked if I should continue taking the medication until the date of my next appointment which is coming up soon. The doctor said to continue taking the medication and nothing else. The physicians assistant acknowledged the pain I said I was in, gave concrete suggestions to try with the next few shots, is going to put another order in for follow up nurse training, and made sure to let me know there would be a conversation at the appointment about the reaction to the medication.

There are some moments where I have asked myself, how much time a week am I spending on calls, messages, or communication in general about this medication/treatment? I feel tired and worn down by all the energy and effort that has gone into all these different communications. These experiences aren’t helping me feel solid or strong and it is making the time around shots more emotional than they need to be. There are moments I am moving through gracefully but there are some moments where my ugly monster lashes out. You know that ugly side of your self, that little part of yourself that becomes aggressive to others when you are hurting or in pain, yeah that part of me has been making more appearances lately. Moving through the hard and difficult moments are a bit easier when I remember to use different kinds of tools and coping mechanisms but I have been struggling to make that choice in some of these moments. There are ways that Shannon and I have tried to make shot time move swiftly and efficiently. Singing during the moment of the shot has been helpful. It wasn’t just singing though, we figured out that Shannon singing holds the space for me and distracts the cat while I sing something else softly to myself for strength, centering, and grounding. The injections continued to be painful and then these small lumps showed up at two of the injection sites but showed up days after the injection. They then became super tender and then the tenderness faded but the lumps still remain. The tips from the physician assistant to help ease the pain did not help so after three weeks of taking the medication I stopped. I read the full info sheet that comes with the medication and saw that even people in the clinical study just stopped taking the medication because of the side effects; it let me know that I was not alone in feeling like the side effects did not make it worth it to continue with this treatment. I figured I had an appointment just a week away and that I wasn’t going to have to wait long to figure out what the next steps were.

The appointment with the physician assistant was great, I like her better than my doctor. I felt heard and supported during the appointment. One of the first things she told me to do was to stop taking the glatiramir acetate. She went over other treatments with me and why she would pick certain ones depending on certain factors. There were a couple she knocked out of the running because of my history of depression, she said those treatments and depression do not go well together so we aren’t even going to try them. She ordered more blood tests and another MRI and wants to make a plan going forward based on those results. She prescribed me something to help keep my energy levels up, it is an antiviral called amantadine that they have been using off label for years to treat low energy in MS patients, she said sometimes it works and sometimes it doesn’t. When I looked it up at home some of the side effects are pretty scary for someone with my kind of brain. I’m more than a little wary of any medication that has warnings about loss of impulse control, aggressive tendencies, and hallucinations. Thankfully it is only for “as needed” so I am going to try all the basics first. Eat better, sleep better, hydrate better, and work out. If doing all those things doesn’t raise my energy levels then I might consider taking it but not until I try the basics first.

Life goes on, there are more tests and doctors appointments scheduled. I’m going to keep showing up for them but I know they can’t answer the questions I really want answers to because science hasn’t figured those out yet. There is a road trip getting planned, though not the kind Shannon and I were hoping to plan. We wanted to be on the road for a month but with the MRI and doctors appointments we don’t have four weeks in a row open. So we are working on some adaptations. We continue to make art and music and I don’t see that slowing down anytime soon. There is a festival season to figure out and applications to submit. And we gotta remember to have fun along the way with all the hard work too.