Two Years Later

Life has been moving so quick I wouldn’t have noticed that I’ve been taking my meds for a little over six months if there hadn’t been a follow up appointment with the neurologist at the end of August. This last appointment was quick and easy. I am liking these tele heath visits a lot. I can skip the drive into Baltimore which helps save on gas since we don’t live right right down the road anymore. I also don’t have to wait in a waiting room for like an hour after my appointment time and I get the cats as company.

During the appointment we discussed getting my blood work done every three months instead of every month. I would also need to get another MRI and the results would dictate the next steps to take. If the medicine is not working we would have to look at other treatment options again. If the medicine is working than we plan to stick with the current treatment and continue to monitor with a yearly MRI. We talked about my tobacco use and how it is putting my health at a greater risk because there is a statistically higher rate of relapse in patients that smoke, plus all the other damages to my health that smoking causes.

In addition to quitting smoking we also talked about exercise and mental health. They wanted me to know that exercise is really important for me to maintain my mobility and dexterity. I talked to them about how exercise is also something that helps me fight the depression brain and how running more is helping with the motivation to quit smoking. They were happy to hear that I was seeking out therapy to help manage my mental health. We talked about how all this stuff is connected.

Getting the MRIs done has been super easy but it will be nice to be getting less of them. The latest MRI results came back quick and came with good news. It showed that the medication is working! The doctor had very little to say, “This is reported as being stable,” were his exact words. I am just happy that I didn’t hear the words “new lesion.” So with the MRI showing my condition as stable there isn’t a need to explore other treatments and there will be a focus shift from finding a treatment to lifestyle changes. 

Dealing with the CVS Specialty pharmacy has gotten a bit easier. It took months for me to be able to order my meds through their system online. There were a lot of calls back and forth and several tickets with IT were opened and closed, but I can finally order the meds without having to talk to a human! There are still some of those bureaucratic snafus that seem unavoidable when dealing with a bigger organization. The last time I ordered my meds I got a call from CVS saying they needed to talk to me before they could fill the prescription. When I called about it they only had me on the phone for a few minutes and it seem like it got sorted out. The next day they called me again and I missed it but they also called Shannon, who is better than me about picking up the phone. Turns out since the last refill the generic for tecfidera came out and my insurance did not want to keep paying for the brand name. So I’ve been switched to the generic, it’s only been a few days but so far so good.

Writing about my experience right now I can’t help but feel lucky and grateful. Within the span of two years I was able to get a diagnosis, I had fairly quick access to treatment, and my condition is stable. I’ve only had one hospital stay. The adaptations I have had to make in day-to-day life have become routine. I’ve learned how to take better care of myself and to be more forgiving with myself. This whole experience is helping me hone the skill of clearly communicating my needs and boundaries. I’ve got a great doctor being supported by a good medical team, and I’ve got lots of love and support from family and friends. It feels good to be in a good place about all this.