Week 23 - Dodged a bullet...for now

Week 23 - Post Lemtrada

March 29, 2020

Another week that felt like a month.  The week started with good news, my husband tested negative for COVID-19! We definitely dodged a bullet there.  He had traveled domestically so we were already keeping our distance. He started having headaches that didn't go away and feeling fatigued.  He thought it was stress and/or being tired from traveling but was still checking for a fever and never had one.  A week later he still wasn't feeling great and read about a NFL coach who tested positive and his only symptoms were a headache and fatigue with no fever.  He contacted our doctor; she had received some tests and wanted to see him and maybe test him.  He went to her office but stayed in his car.  She came out in full PPE.  She checked his blood pressure, temperature, etc.  No fever still but he did have swollen glands.  She tested him for COVID-19, flu (negative) and strep (negative).  She gave him a mask and told him to act as if he was positive.  She also told him it would be 2-14 days before he got results because the labs were backed up.  For three days, he was isolated to either our bedroom or the office.  I cooked and he ate in the office.  I kept telling myself it had to be something else; we were being cautious in the house but not perfect and with my low immune system, I would have come down with something in the week he wasn't feeling good.  Plus the two people he traveled with weren't showing any out of the ordinary symptoms.  It was extra difficult for a few days but then we knew for sure he was negative and I was able to sleep back in my own bed! 😁 Our doctor did send in a culture of his throat swab.  We found out on Thursday (almost a week later) that he did have some strep and other bacteria but since he was feeling better by that point she didn't prescribe him any antibiotics.  It was a good thing that we had stayed away from each other for that week.  I would have caught something.

Our doctor recommended that anytime any of us go out that we should wear masks. Some of my neighbors are sewing face masks to donate to hospitals for use with non-covid19 patients.  You need a N95 face mask to protect you from virus already in the air but if we all wore any kind of mask it would make things safer.  It would help keep the virus from getting into the air by those who don't realize they have it and keep people from touching their nose and mouth.  Numbers are spiking all around the US; I am ready to just stay put for a while and not come in contact with anyone else if possible.

This week our weather was unseasonably and record setting warm.  Two nights in a row, I woke up several times during the night sweating.  The AC was on so it didn't really make sense that I would be sweating but I wasn't running a fever so maybe it was hormones?  The only other thing besides the temperature outside that changed was that I ate a little gluten.  I've never noticed that gluten affected me like that but now I'll have to pay more attention.  I thought about doing a mid-week blog this week since my last post was so long but aside from the test results news; it's been a quite week.  Our county went under a Shelter-in-Place order on Tuesday night.  We still had people hanging out at swimming holes. 🙄 The number of cases in our county has been going up pretty steadily this week and the numbers lean more heavily 20-39 year olds.  That is either due to being a college town and having a younger population in general and/or younger people feeling more invincible.  🤷 I read about a 27-year old women in the area who got really sick; no underlying health issues but she had difficulty breathing and described it as feeling like she was drowning.  I read a post about a 60-year old man and his 54-yr old wife who were very sick as well but still able to take care of themselves at home.  He said they had never been so sick.  All three were sick, thought they were getting better then it hit them hard again.  It took about two weeks for them to really turn the corner.  It's a little scary that some younger people are getting hit so hard and even dying; a 44-year old man who lived in a city near here died and apparently had no other health issues but Rand Paul who had part of his lung removed had no symptoms at all.  I tried to search to see if he had any symptoms come up later but there is no news on him after he tested positive.  It makes you wonder if there are different strains.

Symptom-wise: my energy level was lower for a few days when I wasn't sleeping well but the weather got cooler over the weekend and as soon as I was sleeping better, my energy also went up.  I noticed last week that my hair isn't falling out as much.  That's been going on for a few weeks but I just hadn't really noticed.  I did notice two spots at the top left and right of my forehead that have little pieces of hair growing back in.  It's funny, that's where I noticed hair growing back 6 months after my kids were born.  My fingertips are the same; my legs are a little worse only because it's every morning now but not any stronger.

Other than that we are just trying to hang in there like the rest of the world. Trying to enjoy the extra family time we have without also killing each other. 😉  There are perks, like your kid baking and bringing you beautiful cupcakes.

Take care

Week 22 - The Surreal-ness Continues

Week 22 - Post Lemtrada

March 22, 2020

I kind of have a lot to say today so if this starts to get long winded, I'll help you out by putting a meme in the middle of this.  😜  I slept like garbage last night.  I stayed up a little too late reading and then I came across a Washington Post request for submission. I decided to write that so I wouldn't be writing it in my head all night but then I was editing it in my head so I kept sitting up to take care of that and quiet my mind down but then I started writing this blog in my head!  I think it was almost 5am before I was actually able to drift off to sleep.  I did not give in and write this blog at 4am.  I just tried to think of music or something else.  I woke up at 7:30; just know, if this post goes off the rails it may have something to do with less than 3 hours of sleep.

This has been one of the longest weeks of my life.  Even longer then spending five 8-hour days in an infusion chair.  It feels like two months have gone by and I have to remind myself that it was actually only two days.  Before I get into the craziness of the Covid-19 aka the Coronavirus, let me start with my new blood work.  I went on Tuesday (I double checked it was actually Tuesday).  I wore a mask and so did the phlebotomist.  I also brought gloves with me and wore them when I went into the bathroom to collect my sample.  Before I came into the room she wiped down the chair and she had me swipe my credit card so she didn't have to touch it.  There was hand sanitizer in the room and I used it after each time I needed to sign confirming the labels were correct. There wasn't anyone else waiting when I walked in and only one person in the lobby when I walked out so I didn't have to come into contact with anyone else or sit in a crowded lobby.  I got most of my results back on Wednesday and the rest came in on Thursday afternoon.  They all looked good for where I am at.  I've posted them on my 'pages' if you are interested in looking at the numbers.  I get two counts of my absolute Lymphocytes.  One is part of the CBC and one is part of my Lymphocyte subset.  I got the CBC results back first and it had my Lymphocytes at 853 and the lowest normal level is 850, I was pretty excited.  Lymphocytes are the part of your white blood cells that fight infections.  Thursday I got the Subset back with my T & Bcell counts.  My absolute Lymphocyte count there was 816 so back below normal but it's getting there.  That count is probably more accurate because it's processed differently and seperates the cells out more.  The two counts are usually off a little bit but it's normally less than 10. I am a little surprised the counts are so different.  The good news about the Subset is that my Bcells didn't change at all which is great because that give my Tcells a chance to catch up and my Tcells made a pretty good leap.  If you total all three types of Tcells together they increased by 88 cells.  It doesn't seem like a lot but it's the biggest jump my cells have made since Month 1 post Lemtrada.  I am 16% of the way to the lowest normal level but if you look at my pre-Lemtrada numbers it's a little sadder; I've only gotten back 6% of the Tcells I used to have.  I will take just a low end of normal protection over no protection.

I think I've talked about blood long enough.  Blood and veins, not something we usually talk about in my house.  There are a couple squeamish people who live here and I won't mention any names but it's not me.  😈  I don't usually talk about my day-to-day that doesn't include health stuff not because I think there is anything wrong with blogging that way; it's just that I am a pretty private person in general.  I've exchanged several emails this week with Tracy, who I mentioned in a previous blog post.  She's the British bird who did her first round of Lemtrada almost 5 years ago.  Sorry Tracy, all my British slang comes from Austin Powers and Doctor Who. 😉🤗 Blog link.  I love reading Tracy's blog because she just throws it all out there; I also love that she has kept up with it this long.  It's really important for Lemtrada patients in general and MS patients overall to see how someone else's journey is going even though everyone's journey is different.  I had tried to reach out to her once before but Safari doesn't seem to play nice with Blogger and it wasn't letting me respond.  I found her email this time and decided to try again because she mentioned that she was scheduled to try a new MS medication called Ocrevus and I wanted to ask her about it.  Lemtrada works to "freeze your MS" meaning that you should not get any new lesions or new symptoms.  Obviously, nothing is 100% but that's what Lemtrada is supposed to do.  When I was picturing the "freezing", I was thinking that your current symptoms would stay the same.  Some people see improvement but mostly what you have is what you have and I thought it probably wouldn't get better but it wouldn't get worse either.  Well, apparently that's not really the case as Tracy has been finding out.  She does not have any new disease progression but her old symptoms have been getting slowly worse over the year and got to a point that it was obvious.  Ocrevus, which I had only heard of recently on MS World's forum, works on your current symptoms.  I haven't read into it at all but from what I understand it's an infusion also.  So there it is...one more potential thing that I may have to consider in the future.  It's good to reset my expectations that way I am not shocked if I do need another medication.  It's been really great to connect with Tracy.  I haven't had a chance to connect with anyone else who has taken Lemtrada.  I had tried on the MS World message boards but never got a response.  Most of the Lemtrada messages were pretty old.

Well, on to the next topic...Covid-19.

There you go...a haha before we head into the next not so fun topic.  Inspired by Tracy who put a handy coronavirus adaptation meme in her blog and sent to me by my husband.  Take a look at her blog for an additional smile.  I mentioned before that this week seemed like a year...it just did.  This was spring break for my kids and they had some fun plans but ended up spending the whole week locked in the house with their, very young and fun but still are, parents. 😼  On Monday, we got an email from the school district that school would be closed until at least April 3rd and that they would be working on an online school system in case physical school couldn't start back up on the 3rd (it's not going to).  On Tuesday, the city we live in announced that all restaurant dinning room service and bars needed to close and that social events couldn't be more than 10 people.  My book club has more than 10 people some months (which we are actually going to do virtually this week 📚🤓).  I don't think I've mentioned before that my family owns a restaurant so it was a very tough week.  We had already decided to go carry-out only.  We were seeing a higher and higher percentage of our sales going to carry-out over the weekend and it was the right thing to do.  So we closed on Monday to reorganize and talk with managers and staff and re-opened on Tuesday evening for "no contact" carry-out only with a lot less staff.  We had to lay-off a lot of staff which is never something you want to do and we had to look at our own finances and figure out what needed to be done personally with less money coming in.  If things stay the way it is now, we should be able to keep the doors open.  Hopefully, if a full "shelter-in-place" happens it won't last long or maybe we can start doing delivery.  In the back of my mind I feared a recession, a pandemic that shuts down the world was not even on my radar.  Maybe it should have been, we have enough movies about it. 😷

So it's been a horrible but survivable week. I've been journaling every night for the last 5 nights and checking the Johns Hopkins tracking website at about 11pm every night.  I knew the exponentially growing number of cases would happen because we are just starting to increase testing and there are still shortages of tests.  Some states are saving tests for first responders and medical staff because they just don't have enough and are diagnosing patients by eliminating the flu and x-ray. What has been most disturbing is the number of deaths that have been reported in Italy over the last week.  I think they have report around 700 deaths per day for the last 4 days.  It really is shocking.

I am just sitting here watching it happen through my laptop.  In a sense it's very real, the ramifications are affecting our business and causing me to be stuck in the house again. In another sense, it's happening somewhere else and I am just watching it.  I am worried about family that we don't live near.

Tracy mentioned that she is on a 12-week mandatory "lockdown" because she has MS and is considered high risk. She's working from home and so is her husband so that he doesn't unintentionally bring it home to her.  I was thinking that this is my 3rd time I've been confined to the house in the last 13 months.  Last year in February I had surgery on my nose to fix my deviated septum.  It was something I had been wanting to take care of for over 10 years and never got around to it.  They had to break it and the bruising was so bad that I looked like I had been beaten within an inch of my life.  I caught a glimpse of myself in the mirror at the hospital and started crying; I was very high but I looked like a monster.  It took a very long time for the bruising to go away.  I spent the majority of 6 weeks around the house.  Only going out if I couldn't avoid it.  Then of course this winter because of Lemtrada and now again because of Lemtrada and Covid-19.  I am not really sure when I'll be able to leave again. 🙈 I've already decided that I am not going to do my second Lemtrada dose until they have a vaccine.  If I am honest with myself, it won't be safe for me to be out and about until they get the spread of the virus under control and that depends on how aggressive they are going to be. 😢

One last thing...thanks for sticking with me if you made it this far.  My symptoms: I haven't been sleeping very good but I am not overly tired; my fingertips haven't changed much and my legs are back to noticing some days and not others.  

I will end with something that a friend shared with me that might help us make it through. Happy Hibernating! 🐻😴

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! 🤗

Week 19 & 20 - Back into hiding

Week 19  & 20 - Post Lemtrada

March 8, 2020

I've sat down 5 times over the last week to write this blog.  I've been really distracted by the news this last week.  I have been keeping track of the coronavirus (Covid-19) spread.  Last week, I just thought "ok well, I'll just get some extra groceries in case they have to close schools and businesses and if not we have extra groceries". We started taking the extra precautions again like being more conscientious of washing our hands. I made sure the kids had hand sanitizer in their backpacks and I've been wiping things with anti-bacterial wipes more often again.  This week as I am watching the case numbers rise and death total rise among older people and people with preexisting conditions; I am getting worried.  I know the flu kills more people...blah, blah, blah but we also have an anti-viral for it and a vaccine; for this we have nothing.  Plus my husband is traveling domestically and comes into contact with a lot of people through work; the kids are of course coming into contact with people all day at school.   If we were in our normal situation, we would take the normal precautions but I wouldn't worry about it too much.  In general, we are all healthy but this of course is not our normal circumstance. Had I known, right?  We've talked about me getting out of the city to a smaller town. So I would have less exposure to people in general and not have to worry about my husband or kids bringing anything home but then I would also be alone and what would happen if I did get sick?  The place I would go is a two day drive.  We've decided that I am going to stay home and just sleep in the spare room.  We are also going to practice "social distancing".  As long as I am keeping my distance, no one is coughing or sneezing and I continue to be vigilante about washing my hands and wiping down surfaces, I should be fine.  Plus I am going to stick around the house again. Just when I was starting to socialize again. 🤷  

I've been feeling pretty good.  I can tell my energy level is up a little bit.  Not to the point where I am going to start running marathons but I can tell that I am not dragging quiet as much in the morning.  On Tuesday the 3rd, I woke up very groggy and light headed.  After the kids went to school, I went back to bed.  I drifted in and out of sleep for two hours; when I got up I didn't feel any better and thought maybe it's my blood sugar or I am dehydrated.  I ate and did feel a little better but still felt too light headed to feel comfortable driving.  Luckily, I didn't have much I had to do that day.  I kept eating and drinking all day and I felt better the next morning.  I even had a couple pretty good energy days in a row.  I am not sure what happened but the only other thing I can think of is that I've been taking a supplement called Wellness Brain and I had run out.  I hadn't taken it in two days and I got more in the mail that afternoon.  Not sure if it's related but it's the only other thing that had changed.  My finger numbness is pretty much the same and my legs are getting better in the morning.  Some mornings I have to pause and others I don't.  I will take that and my small increase in energy as a small victory.  I see the functional medicine doctor on Thursday.  I will do an update if there is enough to write about, if not I'll do an update on Sunday.

Stay safe out there....and wash your hands! video 😄💃🕺
original PSA with subtitles 😊