Where Have I Been? Uh, Mostly Laying In Bed Watching Hamilton Non Stop. (You Get The References, Right? It’s Ben Franklin With The Key And The Kite…)

I have been feeling like crap for 3 weeks with my leg. I’m not sure if it’s because it got really hot in So Cal or if it means new lesions. You never know with Multiple Sclerosis, I guess. Well until you have another MRI and then you know. My left leg is always a jerk but starting in late June I got this new horrendous pain in both my leg bones. It hurt so bad I needed help doing any movement.

It finally got so uncomfortable and I could no longer walk on my own, that I did call my neurologist last week to talk about my leg bothering me so much. He asked why I let it go on for 3 weeks. I didn’t have a great answer other to say that if I call him every time I have a leg issue, I’d be calling him all the time. He laughed. When he reviewed my meds I take, he said I must have a high pain tolerance because I don’t take anything for MS related pain. The dentist just recently told me this too. I probably do have a high pain tolerance. I am also stubborn as f**k. I don’t like asking for help. I don’t want help and if I’m being totally honest it’s a deep rooted survival instinct I have from my youth. So instead of being perceived as weak, I buckle down until I just can’t take it anymore. It is something I am aware of and am trying to be better about asking for help sooner.

We decided to change my anti-depressant to an anti-depressant that also doubles as a pain relief pill. I haven’t started it yet because Sunday night when I went to take it, I thought it might interact with another med I take at bedtime so I emailed him yesterday to ask. I’m sure I’ll hear back today.

I take so many medicines for other things I have developed in addition to my MS that I tend to advocate to not take additional meds unless I really need to, like for high blood pressure. My doctor agrees with me for the most part. I am still fairly young and I worry about the long term effects on my organs. We did have a lengthy discussion about changing from Ocrevus, to what will basically be the monthly version of Ocrevus but in shot form instead of infusion form because of the on-going pandemic. It is supposed to be available in September according to the FDA. It’s called . He said because of Covid, he thinks it would be good to have an exit strategy on my immune system, that if I get Covid, I could just not take my shot and my immune system could try to start rebuilding itself monthly, instead of now where I have no immune system for 6 months and it starts to regrow and we go in a bomb it again for another 6 months. It’s normally stressful having a compromised immune system but it’s very scary when there is a pandemic going on.

I’ve been on 4 other MS DMD’s (Disease Modifying Medications) over 8 years. Like so many, I started on injections. You give yourself painful shots of medicine daily or weekly. I started on Copaxone and my MS continued to progress right away. Then I was on Avonex for about a year and a half until my MS progressed more. Next I was put on Gilenya, a pill I took daily. That was great. No more painful lumps and bruises at my injection sites. I took Gilenya for about 3 years until it stopped working. 2 years ago, I lost feeling from my collarbone to my toes on both sides of my body. An MRI showed my MS has progressed into my spine. (It’s no good when MS moves into your spine) I started Ocrevus. I like going to the infusion center twice a year. I don’t like giving myself shots. I feel really good on Ocrevus 4 out of the 6 months I take it. I also understand my neurologists logic about switching back to a shot if it means it could help me fight Covid if I got it.

I can walk normal (well MY normal) again but mostly I have just been laying around and sitting around the house the past week or so. I have watched Hamilton a million times. I was supposed to go see it twice this year but both times it got cancelled and I didn’t get to go. The Hubs and I also started watching all the Marvel movies in the Marvel order. We are about half way done with the 23 movies. (We already watched all the Star Wars movies in order because my son wanted too.) I swear I have never watched this much TV and movies as I have during this quarantine! I should also have been packing to leave for Hawaii for the first time ever this week. The quarantine has taken a lot away this year but I am still here. So far the few family members that have gotten it have recovered. A friend I went to high school with passed away from it so I’m taking it seriously.

Mostly, I am trying to focus on the unexpected time I get with my hubs and kids. I am not a saint. There are many days I wish they were are work and school so I could have some alone time. I hope in months/years, I look back at this crazy time of 2020 and think back to the late night conversations I get to have with my daughter right now. To the random facts my son shares with me about whatever he is fascinated with at this moment. That even though I could never have imagined being on lock down, that my Hubs still makes me laugh and always brings my drink from wherever I have sat it down and forgotten it so I stay hydrated. I hope you can find ways to cherish this time- to grow yourself, to not take this time for granted, to look at the little things, to learn a skill you always wanted too…to remind yourself eventually this too will pass…

Oh and if you watch Hamilton, first time or hundredth time, pay attention to the background actors- they tell such an amazing story with their movements, it’s mesmerizing to watch as much as the main characters are.

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