Washington Post submission

The Washington Post is looking for people to write in about how the Coronavirus is changing their lives.  Below is my submission.  Here' the link if you would like to submit one, max 800 words.

Here I am again!?!  I have MS; in mid-October I took a drug called Lemtrada that killed my immune system in the hope that it would rebuild itself in a way that stops it from attacking my nervous system.  I thought, I would need to hide out from germs for a month but as my immune system was slow to come back during cold and flu season; my one-month self-exile turned into three.  I was just starting to go back out into public a little at a time in mid-January as I watched Covid-19 spike in China and individual cases start to show up in other cities around the world.  I was getting back into the swing of things and making my triumphant social re-debut in February as I watched Covid-19 start to spread slowly around the world and small “hot spots” start to grow.  After the first death in Washington State was announced and we learned the virus had been circulating for 6 weeks and no one knew, I knew my time in the great big social world was limited.  My “killer Tcells” are only about 15% back to normal (the low end of normal) so any virus could hit me hard especially a brand new one that doesn’t have a treatment.  The CDC said to start getting prepared to start grabbing a few extra groceries each time you shopped, so I did.  I stocked the freezer and pantry.  The last time I was out and about was March 10^th; I was supposed go to three appointments.  At the first one I was so nervous that anyone in the office could have the coronavirus that I called into the last two from home.   I’ve only gone out once (for a blood draw) since then and also since then a majority of the world has joined me in home confinement including my two high schoolers and my husband.  Making it not so lonely this time but not any less scary.  All winter, we paid attention to anyone in the house being sick or if anyone in my family was around someone who was sick but now it’s critical that they pay attention to if anyone near them is sick or was that person who’s now talking to you near someone who was sick? Are they now contagious but not showing symptoms?  It can start to spiral quick and it’s enough to drive you mad but when you are in a vulnerable position you have to be on guard.  My family started washing hands as soon as they walk in the door again, carrying hand sanitizer with them and wiping surfaces down with antibacterial cleaners more often.  We also decided to ‘physical distance’ in the house for two weeks post-school closing.  That’s been really hard; not to be able to hug my family especially when everyone is worried.   It’s also worse this time because not only is it making life more inconvenient for us but it’s affecting our livelihood and the livelihood of our staff.  We own a restaurant and although we were already moving to carryout-only for the health of everyone; the City made it not-an-option and we had to re-organize our business model and lay-off employees.  This has been a very tough two weeks.  On a personal level, a professional level and a financial level.  We, like the majority of the Country, are looking at our monthly bills to figure out what can go.   

I keep using the word surreal to describe this situation because I don’t know how else to describe it.  Everything has been turned upside down.  I have had MS for 15 years.  I have never taken a medication this strong and THIS is the year I decide to do it.  I am supposed to do the second dose in October.  That will clearly have to wait until there is a vaccine.  It would be incredibly foolish of me to take my immune system down to nothing again with this virus floating out there.  My heart goes out to cancer patients and others who don’t have the option of waiting.  My hope is that something good will come out of all this mayhem when we get to the other side. Maybe there will be another baby boom in 9 months (start building birthing centers now) and maybe artists will create some amazing music, paintings and plays out of this.  I hope people will see why it’s so important that everyone has and can use healthcare (we will all be healthier for it) and I hope people are able to slow down enough to see that family, friends, community and our environmental are also vital to our well being.  Stay safe and healthy.

Week 21 - Cautious Quarintine

Week 21 - Post Lemtrada

March 15, 2020

I don't even know where to start this week.  Things are a bit surreal these days.  It really feels like we are in a movie.  We've got two extremes going on: empty store shelves and packed bars and beaches.  Hopefully, we will settle down somewhere in the middle.  I mean even in Italy, grocery stores are still open.  It's not really necessary to buy a year's worth of toilet paper.  We don't have any government mandated shut downs yet except for events over 250 people but restaurants have already started proactively going to carry-out/delivery only.

I am trying to keep myself somewhere in the middle.  Like I mentioned on my last post, the CDC said to start getting prepared and buy a few extra groceries each time you shopped so I did.  We have enough groceries and toilet paper to get us through at least 3 weeks, maybe a month if everything had to completely shut down.  The only thing we got at the last minute was some cold medicine and a thermometer because ours was giving me an error half the time.  I guess everyone in the City was afraid theirs would die because we had a hard time finding one.  I was going to setup a curbside grocery pickup for tomorrow.  I did that during the late fall/early winter to lessen my germ exposure while my immune system was really low.  All of the days and times were full for the next two weeks!😮  The only date that had times available was the 30th and I assume that was because they just opened that date up.  Same thing for delivery.  People are losing their minds so I really shouldn't be surprised but I was.

This last week I had felt a little warm a couple times.  Each time I checked my temperature, it was a degree higher than my normal but not at fever level.  I haven't had a cough; I am having more drainage but Oak pollen has been really high the last two weeks.  Everyone in the house has had mild allergy symptoms and we are all on high alert because of me.  No one has had a fever. 🙏

This week I had an appointment with my functional medicine doctor.  We ended up doing a telemedicine appointment.  I know that their office is low risk because they don't see sick patients but with how few tests are/were being done and without knowing for sure if you can be asymptomatic but still contagious (new studies are indicating that you can be), I decided to be on the safe side.  I didn't really learn too much new because it was mostly about how I was feeling and making some adjustments.  I didn't have any new labs to review.  I did send her my latest monthly Lemtrada lab work but that was all normal-ish.  Since my energy is inching up and we seem to moving in the right direction, I am mostly keeping things the same.  I am going to continue to increase my exercise routine and adding more fruit and vegetables into my diet.  She also suggested adding another Vitamin C in and some Licorice Root for energy and immune system support.  I had some Licorice Root (liquid) already.  I was taking it for a little while last year for energy.

This week I need to get my monthly blood work done.  The Quest I go to is inside a grocery store.  Which is convenient for killing two birds with one stone but not for when you are trying to avoid people.  I have a mask that I bought last spring for pollen and is actually a N95 mask which I didn't know what that meant until this pandemic.  I am just going to wear it.  It'll protect me a little.  I did ask my neurologists' office if they were recommending anything additional for patients in my position and they said to avoid crowds and travel which was slightly before they were recommending that for everyone.  I asked them again today wondering if anything had changed but they are still recommending the same.  I wanted to make sure they weren't recommending home blood draws.

As far as my MS symptoms go, my fingertip numbness is feeling a little stronger again and my leg spasticity/shakiness in the morning is a little more frequent.  Both seemed like they were getting better last week.  I think it's probably the stress of not knowing and the possibility of danger. Added into that is we have been doing social distancing between me and the rest of my family since my husband got back into town; 5 days so far.  Plus my kids were in school until Thursday and my daughter had to work Sunday.  They say 14 days.  It's tough not even being able to hug your family. 😔 I guess we will see how strict we want to be for how long.  The kids have spring break this coming week and we will see if that is extended.  The way things are going, most likely. 

A historian recommended that we should all be keeping a journal right now since this a historical event (at least I hope it's just historical); seems like a good idea.  Everyone is experiencing it in different ways.  Plus it gives everyone one other thing to do, write!

Stay safe everyone! 🤗