Monday, March 30, 2020

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

Monday, March 23, 2020

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! 🐻😴