Weeks 26 & 27 - Bloodwork Mixed Bag

Weeks 26 & 27 - Post Lemtrada

April 26, 2020

Let's start with some milestones...I hit 6 months post Lemtrada!!! 🎈 🎊 I've been sheltering-in-place for 6-1/2 weeks. 🤷 😕

I did get all my 6 month bloodwork results.  I call it a mixed bag because my Tcells were up a bit but my Bcells, overall white blood cell count and absolute lymphocyte counts were down.  My Doctor said everything looked within expected range and because my Bcells are staying stable, I don't need more steroids at the moment.  If my Bcells start to spike again, I'll need another infusion to slow things down and reduce the inflammation it causes. 

I had my appointment with the GYN/Urologist over "telemedicine" on Wednesday.  I have a one-year surgery follow-up next week and a neurology follow-up the week after.  They were both switched to telemedicine appointments too; which is a relief.  I had been getting anxious thinking about going into the doctor's office for the previous two weeks.  I was considering postponing them.  For the Urology appointment, we talked about my symptoms and possible things they will want to check for.  I am going to have some extra testing done with my labs next month and I have a follow-up appointment in June for some additional scans.  The Doctor pointed out that Vyvance also stimulates the bladder.  I've only been taking Vyvance for 10 months so that isn't all of the problem but no point in making things worse.  I am going to talk to my Neurologist about that.

This is such a strange time that it's hard to gauge how I am doing.  I was definitely feeling an uptick in my energy levels in February that I had attributed to the DHEA and my hair isn't falling out as much which I also believe is due to the DHEA.  At the beginning of last month, I was taking care of some "house stuff" that I never seem to get to like going through the pantry and throwing away expired items, cleaning and reorganizing the shelves.  Now, I look at things that need to be done and I just don't feel like doing it.  My energy level has definitely taken a dive.  Is it lack of consistent sleep, anxiety, hormone levels or all of the above? I don't know. 

I've been trying to have some type of schedule since my kids started doing their classes online.  I thought maybe having some type of schedule/consistency would help so I didn't feel so aimless.  My plan was to have "office hours" while they were busy with school work.  I thought I would go through email, take care of bills, study yoga or Spanish (I've been trying to learn Spanish for 20 years; one day it will stick🤞).  The whole plan (in my head) was to do some type of workout in the morning, do my "office hours" then spend time with the kids doing something or read or do a house chore and save the weekends and evenings for family time but my sleep schedule is so off.  I am staying up later then I typically would and sleeping in later.  For some reason getting up in the late morning throws me off the rest of the day.  It doesn't make any sense; what difference does it make? For some reason it does.  

I've also been trying to concentrate on just today and not look too far into the future.  It's not my natural tendency, I am a planner, but thinking about the future right now is a little depressing.  I can't see the light at the end of the tunnel, for me.  I plan to ask my Neurologist about this at my follow-up.  I don't expect I'll like the answer.  My Tcells are coming back SO slowly.  In February, they were 11% back; in March, 17% and now they are 21% of the lowest normal range.  I just don't see myself moving around in the world like I was before for quite a while.  

My energy levels have definitely been lower in the last month but they aren't completely in the gutter.  I am up and active everyday; some days more then others.  My days just don't go "as planned".  I am sure you can tell that part of the problem is I am in my head too much.  If I can just concentrate on the day in front of me, really, everything is fine.  We have everything we need; grocery stores even have toilet paper again. 🥳 Everyone is healthy.  Everything since my Lemtrada treatment is moving in the right direction.  The cognitive issues I was having in January and February cleared up.  The supplements the Functional Medicine Dr. added seem to be helping.  I need to keep reminding myself...be in the moment, this is temporary, everything is ok.

Mantra for the week "be in the moment, this is temporary, everything is ok".

The Midwest way...put your head down and keep moving forward.

We did try to see the Lyrid meteor shower this week.  Too much light pollution even in a City in lock-down.  I saw a little fire ball and my son saw one but other than that, no luck. Oh well, it's always fun to sit under the stars anyway.
Star gazing: https://earthsky.org/
An Atlantic article that was interesting:  “The Pre-Pandemic Universe Was the Fiction” by Charles Yu

Stay safe out there...especially as governments start "opening" things back up. 

Weeks 24 & 25 - nothing much

Weeks 24 & 25 - Post Lemtrada

April 12, 2020

It's been a couple weeks since I posted last but honestly there's not much going on.  Like a lot of places we are still under a "shelter-in-place" order which technically ends tomorrow, April 13th, but will be extended.  The number of cases in our county has more than doubled since the beginning of the month and our State ranks as one of the worst for testing per capita.  So it might look like we don't have as many cases as some States but we actually don't know.

We are just trying to pass the time by baking. 😍  It's gotten harder to get groceries as more people are taking advantage of delivery and curbside services.  We have been avoiding going into stores completely but we have needed to make a few quick trips and have been making sure that we have a mask on.  I did receive an email from my Neurology office on suggests to keep yourself safe.  I will post it below.  It is of course for people who are at high risk.  

I really haven't been sleeping well at all the last two weeks.  I assume it's stress/anxiety.  I was getting into the habit of writing journal notes before bed and also reviewing the Covid19 case numbers.  I don't feel like it stresses me out or causes anxiety but it must on some level because I go to bed and just lay there unable to fall asleep.  So I've really been out of it these last two weeks.  My legs aren't right but are still not as bad as they had been.  My fingertips are about the same.  I don't have any other symptoms except the feeling zoned out but I really feel that has more to do with my lack of sleep.

That's all I have for now.  I am getting my monthly blood draw this week so I'll have that info for you next time.

Take care and be well.

Email from my Neurology Clinic:

General Prevention Guidelines
- Monitor yourself for COVID-19 symptoms, which typically include fever, respiratory (cough/shortness of breath) or gastrointestinal illness (diarrhea/vomiting.)
- Stay home to decrease the chance of getting infected or spreading the infection. (There is now evidence to indicate that asymptomatic people can transfer the infection.)
- Avoid sharing household items (dishes, towels, bedding) with other people.
- If anyone is sick in your household, they should self-isolate in a separate room and not be in contact with you. Use a separate bathroom and if not possible, clean after sick person uses it.
- Use a dishwasher to sterilize dishes at high temperature.
- Avoid interactions with people who are not in your household, including friends and neighbors. If you have to be in contact with someone outside of your household, respect a 6 ft distance, no hand contact.
- Do not go on a plane.
- Limit shopping: use home or curbside delivery when possible.
- If you have to go to the store/pharmacy/doctor’s office, be mindful of touching elevator buttons, door handles.
- Do not touch your phone while you are outside of your home.
- Upon returning home from essential activities (ie shopping for food/medicine/doctor visit if needed), wipe your phone/car keys with a disinfectant wife or alcohol wipe, take a shower, wash your clothes.
- When bringing in groceries from the store, use alcohol/soap/disinfectant wipes to clean the objects you are bringing into the house.
- Wash hands regularly and carefully on all hand surfaces for >20s (make sure you are cleaning in between fingers.)
- Disinfect high-touch surfaces daily at home.

We will communicate major updates as the situation evolves. In addition, the National MS Society website has a page dedicated to COVID-19 that is regularly updated.
https://www.nationalmssociety.org/What-you-need-to-know-about-Coronavirus-(COVID-19)