Two years + 1 month + 3 weeks - Hypo to Hyper

 

Two years + 1 month + 3 weeks Post Lemtrada

December 5, 2021

Happy Holidays!

Can you believe another year is about to end? After my kids started school, time seemed to fly by. School years dissolve and blend into each other. But these last two years seem like they’ve been 10 but at the same time keep moving at a rapid pace. I know I am not the only one with this warped sense of time because many people have mentioned the same thing. For me it’s mostly because it’s going to be 2022 but I haven’t done much over the last two years and the things that did happen seem like they happened more than just a year ago. It’s a very strange feeling.

Anyway…on to the events of the last almost two months. I went on a college trip with my daughter; we had a lot of fun but I picked up the flu somewhere. I started feeling like I had allergies (drainage but not feeling bad) about 48 hours after we got home, 48 hours after that it moved into my sinuses so I went to our PCP. She ran flu and covid and I was positive for the flu. 😞 I had the flu shot the week before but it hadn’t been long enough to take full effect. I am glad I went to the doctor when I did; I started feeling worse and running a fever throughout that evening but she gave me Tamiflu and it seems to have shortened it. I started feeling better the next day.

I had an appointment with my Neurologist. It was uneventful…he showed me my MRI pictures and why he thought the new lesion was an artifact (it didn’t show up in other angles, he was surprised they even called it a lesion); we talked about my next Lemtrada dose; an alternative to Vyvanse (I can’t remember if anything was decided about that); and my thyroid. He said he does have patients that had delayed their Lemtrada treatments and are now going forward with them. I was thinking about doing it in February but now we have things going on the end of March, April and in May so I am conflicted between not wanting to be stressed and be able to concentrate on my treatment and wanting to just get it done. I have to be monitored monthly for 4 years after my second treatment; it’s already been two years and I just don’t want to make it any longer than it already has to be. If I don't do it in the next month or two, I am going to wait until the fall.

My thyroid is acting up again and my TSH numbers are back to zero. I had an appointment with my Endocrinologist this week. I was confused about how TSH and thyroid hormones worked together then my PCP explained it to me and it made sense but I forgot again because my Endocrinologist explained it to me and it made me realize I was describing it wrong. My thyroid hasn’t been on vacation; it's on speed. My TSH is 0 because my thyroid is making T3 whether I need it or not. I saw my Endocrinologist in person this week and I am glad I was able to. She checked the size of my thyroid and didn’t think it was enlarged but she thought my eyes looked slightly “bulge-y” and my T3 & T4 levels are high again plus my thyroid antibodies are high so she put me on Methimazole to slow my thyroid down. I started it yesterday. She has a few patients that had taken Lemtrada and some of them only need to be on it for a short time to “reboot” their thyroid, others cycle on and off. She said in extreme cases of Graves disease they do radioactive iodine treatment or remove the thyroid. Hopefully, it won’t get to that point. However if I do have my thyroid removed, my husband and I would have matching neck scars. I can’t think of anything more romantic than that. 😍 I used to be hypothyroid. I had been on 45mg (3/4 of a grain) of Armour Thyroid for at least 5 years. It makes me wonder how bad I would be if I hadn't been or maybe I just would have gone hyperthyroid faster.


We had Thanksgiving with family this year. Not my choice, some family is not vaccinated, and two family members had covid in the two weeks prior but I am not the only person in my family so I kept my distance, kept my mask on and didn’t eat anything while we were there. Thankfully, it’s been over a week and none of us has gotten sick. The Omicron variant is concerning but I am not going to freak out yet since we don’t know much. Even if it does end up being as bad as Delta, I am not sure I could change much. I still wear a mask in stores; I don’t have any more travel plans but I would reconsider those if I did and I only visit with people who are vaccinated. We don’t eat out much at home so I would probably limit that even more. My PCP did say that she still doesn’t eat inside restaurants that it’s still the biggest exposure point. She’s had plenty of patients who have gotten covid and that was their only exposure.

Overall, I've been feeling ok. The spasticity in my legs in the morning is more frequent. Not everyday and as always varying in strength but more frequently there. My fingertips are still numb; not better or worse.  Emotionally I've been not so great.  We have a lot of change going on; both kids graduating high school and getting their lives started, downsizing our house, etc.  This I will blame on MS: I don't handle change well at all anymore.  I never used to be that way and I am not old enough for this just to be an age thing.  That's where I am, trying to deal with the everyday like your kids growing up, getting on with their lives and moving, and the non-everyday like figuring out what is going on with your thyroid, deciding when to do the next dose of a drug that will knock out your immune system again while trying to deal with the middle or end of a pandemic.  It is a lot but a "normal" person would handle it, feel the stress, yes but handle it.  I am left feeling dazed and crying about everything.  By the way, I am still reading that book about the brain and autoimmune disease (I got distracted by a fiction novel for my book club🤷).  There is something to that.  

Alright, I am done openly publishing my pity party to the interwebs 😉.

 

We are staying home over the Christmas holiday. I hope everyone enjoys their holiday season.

Take good care

 

PS sorry about the formatting of my last several posts.  I was typing them out in Word first, there is no paste unformatted option, it makes you unable to change any of the formatting and the clear formatting button doesn't do anything. 

Week 104 - Happy Anniversary!

 Week 104 aka 2 years Post Lemtrada

October 15, 2021

Happy anniversary to me! Two years ago today I started my first (and only so far) Lemtrada infusion.  In the last two years, a pandemic happened, spasticity in my legs and numbness in my finger tips came back and stayed, my thyroid took a vacation, I had a bladder study done and started pelvic physical therapy, we got vaccinated for covid, my lymphocytes are in the low end of normal and seem to be happy there, the spasticity in my legs went away after a year and a half, my numb finger tips have stayed and it looks like my thyroid has returned from it's vacation.

I started reading a book called "The Angel and the Assassin: The Tiny Brain Cell That Changed the Course of Medicine" by Donna Jackson Nakazawa, my functional medicine doctor has been recommending that I read it for a year. I've owned it for close to a year but finally got around to it starting it.  I haven't gotten very far into it but as you can see it's about the brain and about the effects autoimmune diseases has on it.  The author is a medical journalist and has an autoimmune disease I've never heard of.  In the prologue, she starts to talk about the memory issues she has and it rang true for me and made me think about that and all the other symptoms I have or other things I have going on but don't want to admit I have them.

 

I don’t want to admit

I shake sometimes 

Sometimes it's very visible when I lift a glass or silverware to my mouth.  It's not all the time and it appears for not apparent reason.

 

my fingertips are numb

I have a hard time with some fine motor skills, like puttting and earring in or clasping a necklace.

My left knee sometimes feels weak 

If we go on a long walk.

 

I have gotten more and more forgetful and my recall is definitely worse. 

I often can’t think of the word I want to say and forget people’s name until after they walk by/away which is embarrassing.   

 

I feel like I am floating through my life.   

It’s difficult to concentrate sometimes, I often go into a room and forget why I went in or I’ll be working on something, go into another room, see something that I need to do, do that, go back into the other room and realize I forgot I didn’t finish the first thing.  

 

I know forgetfulness happens as you get older but not like this in your mid-forties.  I don’t get to the things I actually want to do like working on my yoga class home study or reading a book; the “to-do” list never ends because I am so inefficient. My days and months fly by and I have no idea how or what exactly I fill my days with.  Those two cognitive issues really affect me emotionally and mentally; I feel like a flake.  I try to brush/joke it off by saying my brain isn’t working today.  I try very hard to make it look like it doesn’t bother me and nothing is wrong.  I am not a “wear my heart on my sleeve”; I am very much a “power through it and don’t bother other people” type of person.  Midwestern up bringing or whatever.  I never want to admit I need help.  I also don't want to admit it to myself.  All those things I listed is progression; I don't want to blame everything on MS and I don't want to admit I've progressed more than I am willing to admit.

Eating “cleaner” without gluten, dairy or anything else that causes me inflammation makes me feel better but it is so difficult for me to stick to. That frustrates me even more because right in front of me is something that I can do for myself. Our culture revolves around food.  Everything is more difficult when you have a "special diet" and I just don't have the energy or willpower.

Speaking of energy, I stopped taking Vyvanse again.  It's such a pain in the ass to get.  According to Texas law, my doctor can't just call a Walgreens in Michigan and have them fill it for me, he can only have it filled at a Texas pharmacy and they can't mail it plus they have to renew my prescription every 30 days.  Every 30 days I have to contact them and ask them to renew it.  It's just a pain.  I had been feeling fine energy-wise until this week.  This week I am just worn out from all the running we've been doing.  I've been on 3 trips since the last weekend in August and I am going on another one next week.  I feel really weird traveling this much but only two of those trips were previously planned; the other two were kind of last minute.  I've taken a different airline on each trip and definitely felt the most uncomfortable on the Southwest flight.  Those planes are so packed and although they require you to wear a mask, they don't enforce it very closely.  I am not going to fly Southwest for a while.

I got my annual MRI last week.  There was a new lesion noted but my Neurologist thinks it’s an artifact, not a real lesion.  I only did my brain without contrast; it was great only being in the machine for 15 minutes.  My blood results last month looked good.  My TSH is still back into the normal range; that’s such a relief.  I also had my T3 & T4 checked but I haven’t gotten the results on that yet.  I expect them to be in the normal range; I am not having any symptoms.  My neurologist sent me the results of the MRI but my appointment with him isn’t until next month.  He said we would discuss the results more at my appointment.

 

I went today to get this months lab work done. I'll post my newest lab results.

 

This post has gone on for awhile. Be well.

1 year + 10 months + 1 week - Summer Check-in

 

96 weeks or 1 year and 10 months - Post Lemtrada

August 24, 2020

I almost missed it but this is the summer check-in. There has been a lot that has happened and at the same time not much change since my last post.  We are hiding from the heat again in the north country.  We are on the verge of being empty nest-ers and are able to hide out a little longer than a typical year.  Texas is still a covid hot spot so we are not only hiding from the heat but also from the Delta variant.  Texas' 7-day average is up to 17,000+ new cases per day.  The area we live in is pretty close to the peak in new cases we saw in January. I don't know what else to say about that.  We know how to slow the spread of this virus; get a vaccine and/or wear a mask and keep your distance from other people.  It’s almost as if that personal responsibility thing doesn’t work. 🙄

When I saw my neurologist in April we talked about my Lymphocyctes possibly being at a new normal.  Then they jumped to 1848 in June and I was so excited that they reached a new high number! Then in July they were back down and August, down further. :( I know this is going to sound silly but if this my new normal I will be disappointed. I have always thought I had a really strong immune system.  I very rarely get sick maybe a cold once a winter even if everyone else in the house has a cold.  If this is my “new normal”, how does that effect my ability to fight off “regular germs”?  No one can really answer that because there are so many unknowns about how our immune systems work.  From just a lymphocyte prospective, my immune system is half of what it was pre-lemtrada.  Does that mean I’ll get twice as many colds every winter?  Will I get the flu every winter now (god, I hope not)?  These are the things inquiring minds want to know but for the most part Doctors can only take educated guesses.  In the wake of Covid, I hope they can learn more about how these things work.

 

The other thing that hasn’t seen much movement is my thyroid.  I saw my endocrinologist in June and she was very encouraged that my TSH went to .17 which she said seems small but my numbers have been at zero for so long that she considered it a step in the right direction and that sometimes the thyroid takes time to wake back up when it’s been shut off for so long. Great news! Right? In July it was back down .04 then to .03. :(  I had my TSH checked a second time in August right before my August follow-up with her because she also wanted to check my free T3 & T4.  At my telehealth appointment, a resident talked to me first and he told me my TSH was .50 which is the lowest level of normal.  Normal! Then the doctor came on and burst my bubble by telling me she was concerned about the accuracy of the lab result, it’s not normal for a TSH number to change that much in 10 days. T3 and T4 can fluctuate like that but not TSH.  :(  That’s now 3 :( ’s  if you are keeping count. ;). So I will be making the trek to the Quest lab in a week or so and will have my TSH checked with my usual monthly labs but she also wants to recheck my free T3 & T4 again.

 

In the next category of things happening but not much changing, is the previously mentioned covid is spike. I got a booster shot this week.  My PCP's office had called to schedule me to come in for one but I won’t be back to TX until next month.  I was just planning to wait until then but because the shots are more available you no longer have to be a State resident to get a shot in that State.  I will tell you that it sucked as much as the second shot did.  So when or if they start recommending boosters for everyone if you had a flu-like reaction to your second covid shot, you will have one with the booster too.  I felt like crap for about 48 hours. The chills (but not as bad), body aches (even my bones ached) and this time I also had nausea and some vomiting (sorry, it’s a health related blog). I am glad I was able to get it before I have to head back to Texas which is competing with Florida to be #1 at creating covid patients.  It also makes me feel guilty that there are countries that don’t have enough vaccine to vaccinate their population once.

Let’s see…I have a MRI scheduled in October then I am following up with my Neurologist and I also have an endocrinology follow-up but she said she would let me know about the newest lab results before that.  I am still currently planning to do my next Lemtrada infusion in February but of course that all depends on what is going on with Covid.  We might be fighting the Epsilon variant; I really hope not.

When I started this blog, the point of it was and is to help others who might be deciding to take Lemtrada have another story/experience that they could weight the pros and cons against.  I expected to have a pretty straight forward story of: this is what I did, this is how I felt, these are the symptoms that improved or didn't.  Who could have predicted that we would have a global pandemic and my journey would be so bumpy or so open ended really. It's a swerve that no one predicted and we just keep doing the best we can.

Stay Healthy

One year, 6 months & 3 weeks - been a minute

1 year + 6 months + 3 weeks - Post Lemtrada

May 11, 2021

I guess I missed April...here's what happened: I had an appointment with my endocrinologist; three rounds of monthly lab work; Texas had a small Covid spike; failed a hearing test; followed up with my ENT; got my daughter vaccinated; got a bunch of rain and lots of weeds and lost a friend to cancer.

Months keep pushing by; my daughter graduates from high school in less than a month.  I had to send a baby picture and current picture to the school. Man, time just flies.  Since she's 18, we were able to get her vaccinated.  She got the Johnson & Johnson shot; she had a low grade fever and felt achy for a couple of days then she was fine.

The appointment with my endocrinologist went ok.  My TSH is still really low and almost 0.  My T4 was on the high end of normal and my T3 was slightly higher than normal.  She took me off my thyroid medication completely and wants to recheck me in June.  I get my TSH checked every month as part of my Lemtrada checks; she'll also check my T3 and T4 again in June.  Apparently, it takes 8-12 weeks to see the change from the medication.  I asked her "when does temporary become not?" and she said as long as I am not experiencing symptoms of hyperthyroidism then she believes it's just a temporary condition from the Lemtrada.  

All of my other labs have been fine and I just got the results of my last round today.  My Lymphocytes are stuck. Just when I thought I was noticing a pattern. For the last five months, the number has been bouncing between 1320 and 1590 cells/uL.  I haven't broke 1600 yet.  I have a follow-up with my neurologist next month.  I am sure he's going to say that happens.

I mentioned in my last post that the texas governor had lifted the mask mandate. The state had a rise in cases right after but it came down again quickly and leveled off.  Leveling off of course is still thousands of new cases a day. 

I think I mentioned in another post that this whole journey started when I got a MRI to make sure that the hearing loss in my left ear wasn't anything physical.  It's not but the MRI showed active lesions on my brain which led me to a new neurologist then to Lemtrada.  Over the last couple of months I noticed that even with my hearing aid in, I was asking people to repeat themselves more.  I got a hearing aid in December of 2018 for my left ear and now I am at a hearing loss level that I could get one in my right ear.  Nothing like getting hearing aids to make you feel really old. 👵 I had a followup with my ENT last week.  He's not going to order more scans since the first MRI didn't find anything physically wrong and both my ears lost hearing at the same pace this time around.  He also mentioned that I could get a hearing aid for the right ear if I wanted to.  I am going to wait and see what my follow-up hearing test shows in September.

 In central and southeastern Texas, we are prone to flash flooding.  We get in these weather patterns, especially in the spring and fall where we almost continuously get pounded by heavy rain and storms coming up from the gulf.  We got into one of those patterns at the end of April and the first couple days of May.  My cheap little rain gauge which I know isn't very accurate said we got 4 inches total; 2 inches on Saturday the 1st.   San Antonio and areas east of us got 5-6 inches just on that Saturday.  There was also a tornado touch down over there.  I know there was localized flooding but I didn't hear about anything wide spread.  Good for our poor frost bitten plants but also good for weeds. 🙄

Finally, I did lose a friend last month.  We had been pretty close for several years but had lost touch over the last couple.  She had a neuroendocrine tumor which I guess isn't technically a cancer but acts like one.  She was very private about it.  Only her family and a close friend or two knew so it came as a huge shock.  Our daughters are the same age, just about to graduate high school.  It's really sad.

Overall, I've been doing ok.  That's really the best I've got at the moment.  I am still on the treadmill trying to find the magic combination that will increase my overall energy and mood.  That is all I can do. Keep trying and try not to beat myself up too much in the process.

Take care.

Pademic Hobby - Bird Watching List

 This is definitely in the category of pandemic hobbies.  I've been a casual bird watcher as just someone who enjoys the outdoors but not at the level where are knew any birds by name except for the very common ones.  I still don't recognize many of their calls because I usually forget within a day of noticing it. 🤷 I am just going to start putting lists and pictures here for anyone who's interested and anyone who's not, they know where to avoid it. 😊

I bought a bird feeder in May 2020 and a wreath that holds peanuts in September 2020.  This is just a list of birds I've spotted in my backyard since then.

 

3/23/21

As of March 2021, my daily visitors are:

- A Chipping Sparrow family (their are some of breeding age with the rust color caps, I though they were different birds at first)

- Northern Cardinals (Currently, two males that battle it out and a female.)

- White Wing Doves (currently, three)

- a pair of squirrels that sometimes tolerate each other and sometimes not.

Most days I also have:

- a pair of Blue Jays

- a Northern Mocking Bird (sometimes two)

- Black Crested Titmouse

Since it started warming up, I've seen:

- a male and a female House Finch (he's red, apparently they can be yellow or orange depending on their diet)

- a pair Carolina Wrens (one is pretty round but apparently birds don't look "pregnant"; and I am not the only one to google that because it popped right up)

- Carolina Chickadees (which I've seen occasionally throughout the winter)

- A Spotted Towhee (I've seen him or her twice this month and I saw them in the fall)

This January/February, we had a flock of Robins hanging around.  I didn't know that Robins traveled in flocks but apparently they do in the winter.  I have two different types trees that have red berries in the winter.  The mocking bird took care of most of the berries on the one tree and Robins swooped in one day and took care of the other tree.  It was crazy.  The tree isn't that big but was full of berries.  The Robins took care of the majority of them in one afternoon then came back for the rest of them the week of our winter storms. I saw them for about a week after that in the area but haven't seen them since.

Since the winter storms, Turkey Vultures have been circling more often. My lot is a little over an acre but the majority of it is wooded and I back up to a 10 acre lot that is mostly wooded and a green belt.  Lots of critters and I am sure the week long freeze left lots of things for the vultures.  😔

Chipping Sparrow family; looking up because one just flew away.

 

During winter stormageddon

One year, 4 months & 2 weeks - Covid Free & Fully Vaccinated

 One Year, Four Months plus Two Weeks - Post Lemtrada

March 4, 2021

Since my last post, the kids and I somehow managed not to catch covid from my husband; I got new blood work results; I've been on Vyvanse for four weeks; people in this State literally froze to death in their homes; the US hit 500,000 covid deaths; the governor of this State thought it was a good idea to lift the mask mandate before most people are even eligible for a vaccine; and I got my second covid vaccine shot.

I have no idea how the kids and I did not get covid.  The day my husband tested positive my sinuses were feeling a little dried out and weird.  I don't know how else to describe it.  I did my neti pot that morning.  After he tested positive, the kids and I were taking extra Vitamin C, Zinc, and some airborne.  I was also taking licorice root.  Even though I was sleeping upstairs, I wore a mask around the kids and used a separate bathroom.  I thought for sure I was going to come down with it; how could I not?  My sinuses started feeling better two days later and after another two days I was feeling a little more confident and not being quite as careful around the kids.  I am still shocked that we didn't get it...definitely, another bullet dodged.

I got the Vyvanse and for the first couple of days got pretty light headed within an hour of taking it.  I would say that it's helped my energy level some.  I am definitely a little speedier. 😉 I have a follow-up with the neurology nurse practitioner next week.

I wrote about the winter-apocalypse in a separate post.

The US did hit over 500,000 deaths.  It's just unbelievable to me and I am not sure many people let that hit them.  They are numb or don't care; I am not sure.  Half a million people in a year, just in this Country and people want to make wearing a mask a political issues.  It's very upsetting to me.

I got my second covid shot last week.  The City health department is behind and the winter storm pushed them another week behind.  It ended up being six weeks between my shots.  The last one didn't bother me except for a sore arm.  This one knocked me down for about 48 hours.  About seven hours after the shot, I got the chills. I don't remember ever having the chills that bad. I had three blankets on me and I was still shivering.  I was achy, my balance was off a bit, and I ran a low grade fever. That lasted for about twelve hours after that I was just fatigued as if I had been sick then after two days I felt fine.  Two days of not feeling great is worth the piece of mind.  I am tired of being scared of everyone.  On a related note, have you seen the flu case numbers this winter?  We are at about 1,500 cases for the whole country.  Compared to the 147,000 cases at this time last year.  I am wearing a mask every winter. 😷😊

My February blood work was normal. My lymphocytes were up a bit and my TSH was up slightly, only to 0.07 so not enough to excited about.  I did my March blood work today and my T3 & T4 were rechecked.  My follow-up with the endocrinologist is in two weeks.  I don't know how long a temporary thyroid issue can go on before it's not temporary anymore but I am losing hope.

That is all I have...take care and stay safe.

 

One year & 4 months - frozen

One Year & 4 Months - Post Lemtrada

February 22, 2021

We were frozen in the heart of Texas this week.  Last year taught us to expect the unexpected and here we are again.  I saw some of this coming; weather forecasters were predicting snow and the extreme cold temperatures for about a week.  I had bought some extra groceries and planned to stay home and off the roads for a while but thought we would be thawed out and back to normal by Friday at the latest.  The extreme-ness of this event caught me off guard.  We were lucky to be on the same circuit as a nearby hospital so we had power and heat except for a few short outages on Friday but we had no water for a week.  Even though we had power we were asked to conserve so we had our thermostats down to 65 and had been using as little electricity as possible.  I'll say, we were very uncomfortable.  My house was not built for that kind of cold so even though the thermostat said it was 65, it was not really 65 everywhere in the house, we were using pool water to flush our toilet, we were reheating food so we didn't dirty dishes (it was cereal, chili, chicken noodle soup and frozen pizza all week) and we had both of our outdoor spigots break so my water was turned off 24 hours before the neighborhood lost water pressure and turned back on 12 hours after we got it back.  I say very uncomfortable because it was miserable but others had it much much worse.  Some people had no power or heat for 4+ days and we were below freezing for 8 days in a row with lows in the single digits 2 nights in a row. I bought extra groceries and made a big pot of soup and a pot of chili before our water went out but I also had power so I didn't lose all the food in my freezer and I had a way to heat our food.  I think it was a combination of the magnitude taking people by surprise and losing their food but there were huge lines just to get in grocery stores, shelves were bare and the roads were so bad (we don't have much to treat the roads or snow plows) that deliveries weren't coming in.  

The schools were closed on Monday for President's day, on Sunday they announced school was going to be 100% online for the first part of the week.  Once the snow storm hit and everyone lost power then water, the school district canceled school for the whole week.  Over the weekend, they canceled classes today and tomorrow and will be 100% online the rest of the week because school buildings were damaged and so many families are trying to clean up and recover.  

Events like this bring out the best in people looking out for each other but it spotlights the worst too.  We were sitting in a cold dark house to save energy for our neighbors and the downtown areas of Houston and Austin were lit up like Vegas.  The cities had to ask the DDA's to ask their "partners" to conserve.  The cities had already asked people to conserve that should have been enough, they shouldn't have to make another special ask.  As you can imagine, when pictures were posted on Twitter of all the lights people were livid.  Over the weekend when it had warmed up but most people still didn't have water, many car washes thought it was a good time to reopen.  Again, folks without water 🙋 were not too happy.  Again, the city had to make a special request to something that should have obviously applied to them too.  People were also reminded that Texas State Legislature had hearings on why the power grid failed after a winter storm 10 years ago and they allowed power plants to voluntarily winterize their equipment and here we are again.  I am sure you've also heard about the insane electric bills some people are getting.  Sorry about that lengthy discussion but that was a major event.  

Since this ended up being long, I am going to leave it here and my next post will be health related.

 I grew up in Michigan so I know this looks like nothing but we actually got 6 inches of snow and I had drifts that were close to 2 feet in some spots and it stayed on the ground for 5 days. The biggest snow storm we have had since we moved here before that was this January when we got 2-3 inches of snow and it was on the ground for over 24 hours.  There has been a couple winters where we've gotten a dusting of snow maybe up to an inch but it's typically gone in a couple of hours.  Here you can't even see where our front walk is.

 

One year plus 3 months & a week - Covid happens

One year & 3 months - Post Lemtrada

Sunday, January 31, 2021

Covid did happen...on Wednesday this past week my husband tested positive.  My kids and I were negative on Wednesday and so far we all feel good.  The virus has gotten so out of control in the US that everyone knows several people that have had it and each time you here "I've been so careful, I don't know where I got it" you think "yeah, sure you have been". Then you are the one; I've been so careful...  We actually have been very careful.  My husband says I've been overly cautious about it. 🙄 And who got COVID? just sayin'.  Anyway, here's the story...a corporate trainer came in from out of state and did training on Thursday last week, on Sunday (a week from today) my husband got a call that "someone" he was exposed to tested positive.  He went out and got a rapid test on Sunday, it was negative.  On Monday, he started feeling bad; sinus type headache, fatigue, achy, stuffy nose and a cough but because he had drainage.  He actually spent the day in bed on Monday and Tuesday.  He had gotten his first covid vaccine shot two weeks ago yesterday.  For about 48 hours after the shot he didn't feel well, fatigue and achy and he said that he hadn't been 100% since then.  This time of year cedar pollen is super super high.  We have something they call "cedar fever"; it's not really a fever but it can cause an intense allergic reaction like a bad cold.  So I reasoned that it must be allergies since he tested negative AND he hadn't been feeling well for about a week (at that time) but on Tuesday when he was still bad enough to be in bed all day (completely out of character for my husband), I told him I thought he should get retested but did we put on masks and quarantine him? Noooo. 🙈 On Wednesday afternoon, he told me he lost his taste and smell and I thought 'ooooh, fudge' (but actually not the G version of that); I knew we were in trouble then he tested positive.  I am frustrated with myself because that was pretty dumb after being so careful for so long to then to try to blame it on something else and not retest until Wednesday.  The alarm bells were going off and I ignored them, dumb.  When my husband saw our  doctor, she gave him an antibiotic for a sinus infection and sent out a swab for that too.  I've been sleeping up in the guest room again since Wednesday.  He is feeling much better but still tired, a little nasal congestion and the taste and smell are only back a little.  Our doctor also gave him an inhaler in case he developed a cough.  He hasn't been coughing at all except the first couple of days when he had drainage.  He never ran a fever but he was taking Dayquil then Advil Allergy the first couple of days so it's hard to say if he would have.  

But here's the thing.  No one else at that training tested positive or got sick.  Everyone got tested on Sunday then retested later in the week.  Also, some of those people actually had more exposure to the trainer because they went out to dinner and one of the managers actually drove them to the airport and they weren't wearing masks. seriously?!? 🤨 Anyway, now it's not as cut and dry but it seems like they were exposed at the same time since their symptom onset was only a day apart. I asked him if there was anyone not in the training that they were both exposed to.  He said 'no'.  Our doctor said incubation is 2-5 days.  That's the amount of time you need to have enough virus to show up on a test.  Then you think 'ok, what did you do between Wednesday and Saturday that could have exposed you?'.  Other than some errands where he wore his mask the whole time, he had lunch with a buddy outside.  Neither his friend nor his friend's girlfriend have been sick.  The conclusion (this has been my detective work for the week) is either A. his friend was asymptomatic and he picked it up from him or B. He encountered a "super spreader" who was shedding enough virus to get through their masks.  We will never know.  Even if his friend got tested by this point it's been over a week and he would likely test negative.

On the Wednesday before his training, we did go in-person to my neurology checkup.  We were there for a good hour and a half but we were together so if he picked it up there then I would have too.  I thought my neurology checkup would be the main topic of this blog post then all this other excitement happened.  This was my first in-person check in almost a year. We talked about when I would do the next round of Lemtrada, the vaccine and my mental state.  He wants me to try going back on Vyvanse for my energy along with the Wellbutrin, keep track of how I am feeling daily, start back-up with a therapist and follow-up with my functional medicine doctor about my Wellbutrin.  I also have an appointment to follow-up with the Neuro NP in 6 weeks.  We talked about my feeling like shit, basically.  I told him I have a baseline of feeling “ok” and that my mood varies a little up and more down from there and my hormones definitely play a role in my being down.   I don’t like being on medications…I hate putting a band-aid on things, especially because I am not doing the things I know will make me feel better like eating more vegetable and exercising but I have no motivation.  I don't have enough get up and go to even get me to the start of that.  I also told him how it makes me sad that I don’t even have the motivation to do things like my yoga homework when it’s something I love doing.  We talked about the concentration issues I’ve been having where I just move from thing in front of my face to thing in front of my face then run out of time during the day because I am slow and not focused. He basically wants to start with the Vyvanse and see how things go and he doesn't want to wait 6 months for my next visit to find out things aren't working.  I did have a telehealth appointment with my functional medicine doctor.  She has some additional ideas but she doesn't want to start too many things at once either.  She also wants to see how the Vyvanse is working first.

I haven't even gotten the Vyvanse, a week and a half later.  First it was out of stock then it took 4 days for my insurance to approve it and now it's out of stock again. Yay! American health system. 👍

I found out a lot of things that I didn’t know were issues. He said that my immune system was back enough for the vaccine to be effective.  Apparently, I could have had not enough white blood cells for the vaccine to "teach" how to protect me.  The vaccine still might not be as effective as it would be in someone with a full immune system but it should be high enough to protect me enough.  Also, I won’t lose all that “instruction” my body received from vaccine when I do my next dose of Lemtrada.  Apparently, part of your immune system that isn’t on the periphery stays with you and retains the vaccine.  Then it occurred to me; how does Lemtrada work if some of your immune system stays with you?  He said it was hard to explain (I asked through the portal) but it was why Lemtrada wasn’t 100% effective.  So that's two things I didn't even know I should be worried about but it's good to know that I don't need to worry about them. 🤔🤷

He also told me that if I wanted to, I could get my second dose of Lemtrada 6 weeks after my second covid shot.  I let him know that I would like to wait until 2022.  I am just tired and I need a break. It's been a year and 3 months that I've had to constantly worry about germs and trying not to get sick.  I don't want to jump right back into that.  My daughter is graduating this year and I would like to travel.  I'll do it in February of next year.  That will be the end of winter and flu season will be wrapping up plus it will give me enough time to recover before my son graduates.  Yes, my kids are a year and a half apart in age and one grade apart.  My bank account is about to be emptied by colleges. 😉🤓 I think that's a better plan for me and there is no data that shows that it matters if you don't get the next dose exactly at one year.  It does mean that I'll have an extra year and a half of monthly blood tests. 😕

Real quick because this post is getting too long...I told my functional medicine doctor how I've been feeling and that I felt like I've been sleeping walking these last two month.  We lowered my DHEA because of the hair fall out (I think it's getting better, not sure) and my thyroid is working or not working we aren't sure.  But all of that could just be throwing me out of balance.  Oh and I am due for my monthly labs next week as soon as my Doctor thinks we are clear to be out and about.

Below is a picture of a Road Runner running through my yard.  They are so fast that I only had time to grab my phone.  I also saw two new birds a Chipping Sparrow and either an Orange Crowned Warbler or Nashville Warbler.  They look pretty similar and I saw it while I was outside so I don't have a picture to compare it to. That's all for now...Take care.

 Crappy iPhone picture of a Road Runner

 

One year plus 13 wks - Vaccinated!

1 year & 13 weeks - Post Lemtrada

January 17, 2021

First things, first...HAPPY NEW YEAR! 🥳 We survived 2020.  My kids kept talking about how people were acting like as soon as we got to the new year everything would be better.  I don't exactly feel that way; I was just glad to have a not-so-great (putting it mildly) year in the rear view mirror. 

Second things...I got my first shot of covid vaccine last week.  I am in Texas' group 1B which is people 65 and older and people with health conditions that make them more susceptible to covid complications. 🙋 I actually wasn't sure if I was included in that group but my doctor told me she thought I was.  Group 1A in Texas was health professionals and people living and working in long term care facilities.  Vaccine doses are very limited so I am very lucky I was able to get one.  I was on five waiting lists.  That is the downside of not having a national health infrastructure; the roll out has been a mess.  Some how the federal government isn't even sure what they have.  Promised amounts of vaccine doesn't arrive or arrives in smaller amounts and the States are mostly going with CDC recommendations for priority groups but they all have their own distribution plans.  That leaves people confused with how to sign-up, where to sign-up, etc.  Every pharmacy has their own procedure.  Some have waiting lists, some just want you to keep checking back and they'll put up a scheduler when they have some.  Most don't know when they'll get more.  Texas has a dashboard but I am not even sure how accurate that is.  It says certain pharmacies have vaccines but according to their websites they don't.

I received the Moderna shot; I'll need to get the second one in four weeks.  My arm/shoulder was sore for a few days but I had no other reaction.

My latest blood work is up on my pages.  It's from a week and a half ago.  It's the same as it has been for the last several month.  My TSH is still near zero and my lymphocytes decided they wanted to mess with me after I mentioned I was noticing a bit of a pattern.  They went down a little but are basically the same as the last three months.  I have an appointment with my Neurologist this week.  I am not sure that we have much to talk about on the Lemtrada front but it's been almost a year since I've seen him in person so we'll see if I've had any neurological changes.

The other thing that's been going on is that I've had an increase in hair loss since early December.  My thyroid levels were normal at the time.  We are still trying to figure out the cause.  I did reduce the amount of DHEA supplement; that may help.  The Endocrinologist did lower my thyroid med dose and I have a follow-up with the her in March.

That's what has been going on here.  All other symptoms are the same; numb fingertips and morning spasticity in my legs.

We are heading out of the tunnel.  Please stay safe and protect yourself and others by wearing a mask.

Take care