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.

Week 7 - damn bladder infection

Week 7 - Post Lemtrada

December 8, 2019

I guess we are getting to the very boring part of this journey.  For myself, there is not too much going on.  In life, things are never dull.  As I mentioned at the end of my last post, my bladder infection was stubborn.  I went to the Doctor's on Monday, they sent off a urine sample for a culture and gave me that crazy antibiotic.  On Wednesday, they called and based on my culture results switch me to a Macrobid.  I was more then happy to get off the crazy antibiotic.  The Macrobid did the job; I am feeling better.

I saw my Dermatologist this week too.  Because of my family history of skin cancer and because I had a melanoma 3 years ago, I will be seeing her every 6 months for a couple of years.  She didn't see anything concerning but I did have a mole that was moderately atypical and it was coming back so they took another biopsy.  She didn't think it looked like anything but wanted to be sure.  After I got home, I realized that I really should have waited until my next appointment in 6 months to have the biopsy.  Especially since she was just taking it as a precaution.  My PA had just suggested I postpone my dental cleaning a couple months instead of opening myself up to possible infection then I go and get a skin biopsy.  Not too smart on my part. 🙄 In 6 months, I'll be better able to heal and fight off infection.  I wasn't happy with myself for not thinking about that.  The biopsy results came back normal so all is good there.

My husband had arthroscopic surgery on his shoulder so that's kept me busy; taking care of him the first couple of days and just helping him out this week.  In a week and a half my son is having surgery.  I'll be playing caregiver again.

My energy level and sleeping has been the same.  Some nights I sleep better than others and some days my energy is a little better than others.  There has been times when I just don't have any motivation to get off the couch but I haven't had any days when it's just impossible to get moving.  I had read that some people do have fatigue that is that bad.

I mentioned in my "First Follow-up" post that I had talked to my PA about seeing a functional medicine doctor about hormone issues.  I have an appointment with one in January.  I am cautiously optimistic.  I've tried so many different things throughout the years that I start to feel like I am throwing darts at a wall.  Most things I've tried have helped a little but I've never found the magic combination.

Saturday is the official 8-week point.  My T & B cells should be starting to repopulate.  I am wondering if I'll feel any different or notice at all.
Until next week...

Week 6 - Thanksgiving of sorts

Week 6 - Post Lemtrada

Nov 24-30, 2019

I hope everyone had a good Thanksgiving holiday.  This week's post is late and I have a reason.  I've been very emotional this week and I feel like all I am going to do in this post is complain and I don't feel comfortable doing that especially since I feel like most of my posts lately have been full of complaining.  I grew up in the Midwest and that's not something we do.  Let me qualify that;  people from the Midwest do bitch, sometimes.  We bitch about the weather, our boss, the traffic and lazy corrupt politicians but we do not whine.  There is a difference: A. even though we bitch, we put our head down, scrap off the car and go to work (there are bills to pay and kids to feed). B. whining is done is an annoying voice. 😏 You can not hear my voice but I think I am moving more into whining territory. 😔 Plus we don't talk about our feelings and I've been feeling pretty miserable.  There you go; another post of complaining and about feelings and I freeze up.

The first couple of weeks I was going back and re-reading my posts and correcting for grammar, etc.  I haven't read any of my last four or five posts because they are just embarrassing.  I want people who are or may be in the near future going through this process to know that these annoying things can happen and maybe they are little in the grand scheme of things but they can happen and still make you miserable for a bit.  Putting this out there at all is uncomfortable for me but it is much easier to write about how great you feel and how great everything is going then how down in the dumps you feel.

On Monday night, I felt slightly like there might be a bladder infection coming on.  By Tuesday afternoon, there was no doubt and it hit me hard.  I was running to the bathroom every 5 to 10 minutes and had all the other text book bladder infection symptoms; no fever though.  I upped the amount of D-mannose I was taking, took a cranberry concentrate and drank some cranberry juice.   That definitely took the edge off within an hour.  There is some disagreement about whether cranberry really helps a bladder infection; I am not sure if it will cure one but I have found that it makes the symptoms more tolerable faster then an antibiotic by itself.   I  contacted my Neurology office and my PCP.  My PCP got back with me first.  She was going to prescribe a Marcobib but when I told her I was already taking Sulfameth/Trimeth (Bactrim) once a day, she suggested upping it to twice a day because it's an antibiotic typically used for bladder infections.  She said for 5 days.  My Neurology office was good with that and also suggested I keep taking the cranberry concentrate (I wasn't taking it every night) and take a 1 tbsp shot of apple cider vinegar.  It's supposed to lower your pH and make it harder for bacteria to grow.  I also kept taking the D-mannose and upping my water intake.  I forgot to do the apple cider vinegar shots except on Saturday and Sunday nights but I did everything else and the bladder infection never fully went away.  As I am sure you can imagine with the extra water and my bladder not behaving in general, I was up once or twice a night to use the bathroom so sleeping was not great this week either.

And because it seemed like a good idea in August when I scheduled it, my son got all four of his wisdom teeth out on Tuesday as well (my husband took him).  Then my husband and daughter left on Wednesday to visit family for Thanksgiving.  I didn't want to risk flying and I didn't want them to stay home because of me.  My plan was to hang out with my son, eat soft foods and binge on Netflix, which we did.  There was just this underlying 'not great' feeling for me and I was a little out of it too.  I even forgot to get the mail all week. 🙊  And my homemade gluten free version of the family roll recipe came out too dry so that was a big thanksgiving soft food feast disappointment.  Sidebar: Did you know that there is a British version of Design Star?  It's called Interior Design Masters and instead of their own TV show, they win a commercial design contract.  We watched the whole first season.  Wasn't too bad, at least they had cool accents.  

That brings me to just being tired of being tired and of not feeling good.  I know that this journey has just started but anyone who has had MS for a while and who's main symptom is fatigue knows what I am talking about.  It's a general feeling, you can't see it, you pretend that everything is fine but really you're not and you just hate feeling this way.  The feeling really hits me when it feels like it's one thing after another.  First it was the steroids keeping me up then I had the cut/irritation on the inside of my cheek, now I have a bladder infection that doesn't want to go away.  Is any of that a big deal?  Of course not; there are way worse things in the world but when you are sitting around the house looking at all the piles and projects that you would like to be doing but don't have the energy or concentration for, it gets to you.

I am on a new antibiotic called Ciprofloxacin and they are doing a urine culture which might be back tomorrow or Thursday.  I can't tell if the antibiotic is working but I think so. 🤞 This antibiotic has almost as many possible side effects as the Lemtrada.  I have to drink extra water because it might affect my liver.  I can't eat or drink dairy with the medication because it might cause tendon issues; I can't drink caffeine; I can't take certain vitamins like calcium, iron, zinc or magnesium too close to the time I take the antibiotic and it might cause nerve issues...I wish I was joking...it's just slightly crazy.

Here's to hoping the antibiotic works and doesn't kill me. 🍷