“At times, our own light goes out and is rekindled by a spark from another person. Each of us has cause to think with deep gratitude of those who have lighted the flame within us.” – Albert Schweitzer
There are many times in my journey with illness that I have been unhappy with and complained about the health care system. It is easy to feel like a number when you are attending numerous doctors appointments and having painful tests done. It becomes tedious and you can start to lose yourself amongst the doctors, specialists, nurses etc. It is because I have felt this way many a time, as I am sure many of you have, that I want to write this blog entry to celebrate when things go right.
As I said in my last entry, I had my first full infusion last Thursday of a very new MS drug. It is all new to me so I don’t really know what to expect with it. I have to go in to a clinic for the full day to receive my 6 hour infusion that is hoped to slow down progression with my multiple sclerosis. I have been on three drugs prior to this one over the 19 years I have lived with MS. I have been fortunate that they have worked for me, but now I am at a time where I need more of a heavy hitter of a medication. I was quite nervous about starting this medication experiment. When I went in to the clinic, I met my nurse. I was the only one in the infusion clinic for the day. My nurse was absolutely lovely. We had many things in common and talked about our hobbies and families. It was the same nurse I had when I went in for my half dose 6 months prior. That familiarity was comforting. She also told me I had inspired her to take up an instrument after I met her the last time from talking about some of the new things I was learning. She was so kind and relatable that she made me tremendously less stressed about the line in my arm. Next time I see her in 6 months, she may teach me how to knit.
I took it easy for a few days after my infusion. A few days ago I started to get a feeling of pressure on my chest. For two nights it happened and then on Wednesday it was pretty continuous for the whole day. I spoke with my mother that evening and she demanded, yes demanded, that I go in and get it checked out. I first went to a medicenter where they ruled out a bunch of stuff and then told me I should really go to the hospital to make sure it was ok. The doctor at the clinic was great and wrote me a note to hopefully get me in to emergency quicker.
I was not at all looking forward to spending my whole evening in emergency for something I was sure was nothing. However, when your mom tells you to do something, you do it. One issue with the infusion I had had the week before was that it essentially wipes out a large portion of your immune system. The last place I wanted to be was in a hospital full of sick people. When I checked into the triage desk, I said I felt silly being there because I wasn’t sick. I gave her the note from the doctor and told her about my compromised immune system. She told me they had a long wait but that I would not have to wait. Not sure if it was because it was related to my heart, or that I was immuno compromised, but they had a nurse come get me with a wheelchair right from the check in desk and brought me to a private room. The nurse took a lot of blood samples and hooked me up to a heart monitor and sent the blood work off to the lab. A doctor came to see me shortly after and said we just had to wait for bloodwork. The nurse chatted with me about life, brought me heated blankets and overall, made the experience quite painless. At the end of the visit, my heart was fine and we discussed other things it could have been and discussed options to make me more comfortable. All in all, I was back in my own home after less than three hours with the peace of mind that everything was alright with me.
As I write this, I still have a bit of pressure on my chest, but am in no way worried about it. I felt like every medical person I dealt with saw me as a person and treated me with dignity and kindness. I could not have asked for a better experience.
I thought about why this visit had gone so smoothly as there have definitely been experiences in the past that have been much more stressful. I think one reason is that when I went in, I was not in a crisis. So many times I have gone to the hospital with new numbness and any other multitude of crises and am panicked. I am sure health care professionals deal with this high stress level of people coming in and having to deal with that fear. I think for the most part, I was calm so people I dealt with were calm. That is easier said than done when you are in the middle of a health crisis and fear is in the drivers seat. The healthcare system is a difficult one to navigate. For me, this last medical adventure was a positive one.
Thank you to all the nurses and doctors that go to work everyday and encounter people who are going through one of the roughest times of their lives, and treat them with dignity and kindness. I was able to see you and appreciate your efforts to make me less scared and to feel like a human and not a number.