Weeks 9 & 10 - Two more weeks, Check

Weeks 9 & 10 - Post Lemtrada

December 29, 2019

These last two weeks were a combination of whizzing by and no motivation.  I stayed busy getting ready for Christmas, getting ready for more care giving activities, playing caregiver again and Christmas Day.  Our Christmas Day was nice and quiet though. 

I did get my blood results or at least most of them.  I did not get the Lymphocyte Subset so I don't know where my T & B cells are specifically but my total Lymphocytes actually went down a little bit.  It's pretty disappointing.  The only comment I got from my Neurology office was "blood results are within range".  I sent them a note asking if they were concerned at all that my Lymphocyte levels didn't go up at all, if they were still expecting my other blood results and what their suggestion is for my interaction with crowds but I haven't gotten a response back yet.  I sent a follow-up yesterday but nothing today either.  It is the holidays but like I said in my note to them, I can't hide away from the world forever.  I posted my results under Pages if anyone is interested.

My emotions have been a bit of a roller coaster the last two weeks.  The Lymphocyte levels are really disappointing.  I've been trying to not get down about it but it's really hard.  I keep telling myself it's only been two months but the doubts pop-up easily when you haven't seen anything positive to point at.  Then it starts feeling like everything else that you've tried (just another dart).  On Saturday, I was getting really anxious about my to-do list (this blog being a week behind being one item). The list really isn't that long and that made me feel worse because I was upset with myself for not being able to handle things like a normal person.

I've also had some stomach issues over the last week and a half.  Last week it was just a little queasy feeling and had some gas pain.  Yesterday, I had some bad stomach cramps for part of the day.  It felt like my actual stomach lining was cramping and I felt hungry and nauseous at the same time.  I had gastritis over 5 years ago and it was the same type of feeling.  I think it's from all the antibiotics I've been taking.  From it irritating my stomach and from the lack of good bugs in my gut.  I have been taking a pro-biotic here and there; I haven't had anymore issues with that so far.  I also took a Nexium yesterday because I remember taking an antacid was one of the things I did when I had gastritis.  I exchanged a few text messages with my PCP today.  She agreed with me that it's probably from the antibiotics and told me to keep taking the Nexium or take some Prilosec.  Today my stomach has been better not 100% but nothing like yesterday.

That's it...a blend of legitimate busy-ness, being in my head and stomach stuff.  Sorry for being such a downer again this week.

I hope everyone had a good holiday week and Happy New Year!

Week 8 - Keep on Truck'in

Week 8 - Post Lemtrada

December 15, 2019

When I started doing the weekly posts, I was typing daily notes to myself about all the things that went on that day.  I've gotten away from that so now when I get to these, I have to think "what happened this week". 🤔 This week was really about keeping myself/things moving forward; helping my husband; taking care of the 'chores' around the house (laundry, grocery pick-up, picking up and dropping off kids, etc, etc, etc); and taking care of Christmas gifts online (I am not going anywhere near a mall or Target). Or into a post office which is unfortunate because I do like to wrap gifts myself and send them to my nephews.

That was the main thing for this week; just getting through all the day to day and holiday stuff that doesn't wait.  Every week, I need to make decisions on what errands I think I can run and be ok and which ones might be a little more risky (interaction with a larger number of people).  I feel like if it's a situation where I can tell if someone is sick and avoid them then I am safer than if I am just in a crowded store where you are walking by a lot of people and don't have time to assess who is sick and who isn't.

I took the last of the Macrobid on Tuesday this week and haven't had any additional bladder or UTI symptoms.  My sleeping and energy level has been the same, day-to-day, not any worse or better overall. I have been staying up a little later than I should some nights so that hasn't helped.  I am due to get my monthly blood and urine test this week.  Yesterday, was officially eight weeks so I may see my T & B cells coming back in these results.

It doesn't feel like it's been two months.  Time actually went by kind of fast.  I think because I thought I would have all this extra time but unfortunately I really haven't.  I was thinking the other day that it's been two months since I've been to a restaurant.  Honestly, it's not even something I miss.  We've gotten carry-out so I don't know if that helps or not.  What I am really looking forward to is not having to think so hard about what I am eating or where I am going.  I hate grocery shopping but it'll be nice when I can just run to the store and not have to think strategically about whether I really need something or if someone can go for me instead or when the least busy time is so I can run in and out.  I am tired of missing out on events like school concerts and local plays that we had tickets for.  Getting back to more normalcy will be nice.

Have a good week.