ONE YEAR! plus 2 weeks - Happy Halloween

 1 year, 1 week Post Lemtrada

October 31, 2020

It's official, official - I've made it one year!!! 🥳

With the end of the year barreling towards us and this being such a bizarre year, I am sure that everyone is thinking about what they thought they would be doing right now.  We were already planning out when I would get my second infusion; how we would time it around the holidays.  Wouldn't it be nice if that was our only variable?  I've been making a mental list of all the crazy things that have happened.  The wild fires in Australia; seeing burned and dead koalas broke my heart.  I thought it would be this huge global story and I think it was for a couple days, maybe a week?  I believe I read that up to this point in the US, 2 million more acres have burned this year than last year and there are still 22 fires burning in California.  You actually have to look for that data because it's not even headlines.  Hurricane season in the US has broken a record with the most storms hitting the US since 1916 and the most storms hitting Louisiana since records were kept! This year is tied for most named storms in the Atlantic with Zeta being the last but 2005 had 28 "name-able" storms; I guess NOAA missed one.  We still have a month of Hurricane season to go and there is a disturbance they are watching. The next name would be Eta. This year deserves to be the king of hurricanes; it would be great to have a couple more as long as they just stay out in the ocean and don't cause any damage.  There is craziness in the US political arena but I'll leave that stress and nonsense alone. There's been small outbreaks of mosquito born and water born diseases that happen occasionally in a normal year but this year; you just think "stop. already.".  Meteors are always coming close to the planet but this year they are adding to the pile too.  My only concern is, why does it seem like amateur astronomers keep finding these things? Don't we all have space agencies for that?

Anyway, it seems to be the year that keeps on giving as the world seems to be heading for a second wave in virus cases.  Well, I am not sure the US ever came out of the first one; I think we've just been riding peaks and valleys in the first wave.

On to the health stuff...I did get my flu shot and 2nd pneumonia shot; no issues except for a sore arm. I asked my Neurologist about my lymphocyte/immune system strength question.  He said that I was right, my immune system won't mount much of an attack at this point but that he was happy with the level of my immune system recovery.  I am doing well but not out of the woods.  I was getting a little bit more comfortable with going to stores, at less busy times though.  Now that numbers in Texas and the US are spiking again, I am going to have to rethink things. So far my area is fairly stable.  

I had that Urodynamics test this past week, finally.  It sucked!  Apparently, I have an overactive bladder and I am getting additional ultrasounds this coming week...fun.  All other symptoms are the same; nothing better, nothing worse.

2020 is also the year of new hobbies or getting better at current ones.  I've never been a bird watcher but I've been taking pictures and keeping a list of birds I see in my backyard.  Here's my list:

• Humingbird (ruby throated and probably, black chinned)
• BlueJays
• Northern Cardinals
• House Finch
• Carolina Chickadee
• Carolina Wren
• Lesser Goldfinch
• Black-Crested Titmouse
• White Winged Dove
•  maybe a House Sparrow but they were moving too fast

I included a couple pictures of a Blue Jay and a Cardinal.

Stay safe out there, for real.

Weeks 45-51 - One year coming up

Weeks 45-51 - Post Lemtrada

October 11, 2020

My one year anniversary of my Lemtrada start date is in 4 days; I started counting on the last day of treatment so this is the end of week 51.

The Good News: 🎉

- My MRI came back with 'no disease progression' i.e. no new lesions.  That is especially great news because it was in comparison to a Nov 2018 MRI so I had gone 11 months prior to starting Lemtrada.

- I haven't caught COVID (knocking on lots of wood).

The Not-So-Great News: 😔

- My thyroid might be shot.

- Three of my relapsing symptoms have been pretty permanent since the Lemtrada.

Of course being human, my brain concentrates on the not-so-great things.  Do you think that's a survival adaptation?  To metaphorically be looking over your shoulder because you definitely notice the positive people, seems to be less of them out there.  Anyway, my lab work was a little late this month because I had yet another UTI. 😢 That's the fourth one in 12 months.  The results showed my TSH is still almost 0.  I do finally have an appointment with an Endocrinologist.  The US healthcare system at it's finest.  It took me over 6 weeks to be allowed to make the appointment and now I am waiting another 7 weeks for the actual appointment.  This is how that looks when you have a HMO (currently, my only option): my Neurologist sees my low numbers and refers me to an Endocrinologist but my PCP (Primary Care Physician) is the only one who can send a request to my insurance company.  So the Neurologist office contacts my PCP's office; they do not respond so I contact the office; they get the request through and I wait for the insurance company to whatever they do; they finally approve it then I have to wait for the official approval to get sent over to the Endocrinologist and for some reason I have to wait for them to call me; now I have an appointment the first week of December.  I am not dead, clearly, I haven't lost all my hair and I am not fatigued to the point that I can't function so it must not be that bad.  I already take some thyroid medicine so I am not completely without thyroid hormone.  I would hope if it was an emergency, they would get me in sooner.  For now I am just trying not to worry too much.  I had an online yoga training intensive the last two weeks that took my mind off of pretty much everything. That was a nice break. 

Looking back at my last post and my notes-to-self; I had 't realized that I didn't post at all in September.  Other things that have been going on; I had a telehealth appointment with my new Neurologist at the end of August.  He scheduled me for the MRI since I hadn't had one; we are going to put off my Lemtrada until there is a vaccine for COVID. He said that because my MS isn't really active; he would rather put it off because if I did take the 2nd dose of Lemtrada now, I wouldn't be able to get the COVID vaccine until my immune system built back up enough.  We talked about my leg spasticity and CBD oil.  He said he has patients that it works for and some that it doesn't.  He's never prescribed it to anyone because of the strictness in Texas' medical marijuana laws.  He also recommended stretching in the morning and before bed.  I haven't been consistent with the stretching.  I am still using the CBD lotion but it's still the same; seems to help a bit but not completely.  He said I was good to get a flu shot and my 2nd pneumonia shot; I am taking care of that next week.  I asked him about the T&B cell subset; he said they wouldn't give me anything that would reduce my immune system right now so basically there is no point in tracking it.  I decided it was better not to know since they wouldn't do anything about it anyway and it would be one more thing for me to obsesses over.  My Lymphocyctes went down a little compared to the end of August which itself isn't a big deal but I did have that UTI so it's a little disconcerting that my body didn't seem to mount any kind of attack.  I've been trying to tell myself that it doesn't necessarily mean anything but I think I am just going to ask my doctor.  He can tell me I am over thinking.

I think I hit all the big things.  We are back in the heat of Texas; still in the 90s in October.  I've got my bird feeder back out and bought a peanut wreath.  I am watching a squirrel hang upside down to get a peanut.  They are buried all over my backyard.  I've turned into a 70-year old lady feeding the birds and squirrels.  👵  All the other things finger tips, energy level, etc are the same.  I had my annual physical and another appointment with my functional medicine doctor.  My physical went fine and I am still working with the functional medicine doctor to even things out.  Still throwing darts at a wall. 😕

I've got my latest blood work posted.

Stay well.