One year plus 7 weeks - Quickie

Quickie

One year plus 7 weeks Post Lemtrada

December 5, 2020

Just a quick update. My latest blood work is posted.  My Lympocyctes went up a little, my total white blood count is down a bit and my TSH is up so slightly that it's not really worth a mention.

I had an appointment with the Endocrinologist this week.  She said that it is possible that this is just a temporary situation caused by the Lemtrada.  She said that my Thyroid anti-bodies being low was another sign of that.  She checked my T3 & T4 numbers again which are both in the normal range.  I haven't heard back so I am not sure what that means to the doctor but she did say she might just take me off of my thyroid medication completely to see if that gets the TSH number up.

I didn't mention this last time but my ultrasound results came back normal.  Well, normal for what they were looking at.  

Take care.

One Year & One month - Thanksgiving time

One year and one month - Post Lemtrada

November 30, 2020

I am really not sure how the weeks keep escaping me.  I was planning to do a quick update right after my last post when I got my latest blood work results but here I am a month later again.  The blood work was all within the normal range except my TSH which hasn't budged even though I've lowered my thyroid medication.  My Lymphocytes made a pretty decent jump though.  I've noticed I have a slight pattern.  Except for March/April when I did the steroids to slow down my Bcells; my Absolute Lymphocyte number stays about the same for two months then takes a good jump up then stays about the same for two months then takes another jump up. The pattern even stayed the same when I had my last UTI and was on antibiotics.  It's just something I noticed.

Tomorrow I have a telehealth appointment with the Endocrinologist.  She had me get another T4 count and it was still in the normal range.  So other than my TSH everything seems normal but of course I am taking thyroid medication already.  We will see what she says.

Other than that everything has been the same for me.  We stayed home and didn't have anyone over for Thanksgiving.  I was disappointed to see the airports packed this past weekend.  We are already in a massive spike of cases and the healthcare system in certain areas is already stressed.  I am really afraid of how things are going to look 2-3 weeks from now.  I have a friend and two family members who tested positive right before Thanksgiving.  Luckily, all three have/had mild symptoms but my mom has a friend who was very sick.  Her and her husband spent time in the hospital and she is recovering very slowly.  It's not a good situation here.  I know, I really know how frustrating it is to have to lock yourself away.  Hold on folks; there is light at the end of the tunnel.  Several vaccines look promising. The sacrifice now isn't just for you but our society as a whole.  Hang in there!

That's all I've got really. On an unrelated topic...I saw our Road Runner, a Spotted Towhee, a Robin and a Mockingbird in our backyard in the last month.  Robins are always a sign of spring in Michigan but I've never seen one in Texas although I know they pass through.  I now have 12 birds on my list who've visited our backyard this year. :)  A couple photos are below of a White Wing Dove & Titmouse and a Mockingbird.

Please stay safe and healthy.

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.

Weeks 41 - 44 - dog days

Weeks 41 - 44 Post Lemtrada

August 23, 2020

Twenty days of 100+ degree weather in Texas this month.  Glad we are still up- north.  The kids' school start date was delayed then they are starting online for a few weeks but we will continue online school until we think it's safe.  We will be heading back to Texas soon though.  The number of COVID-19 cases has come down from it's peak in July but all the indicators (new hospital admissions, Positive rate, etc) are still higher than they were in mid-May.

So what's been going on with me...my thyroid seems to be failing me. 😞 I had my blood work done last week and my TSH level came back at 0.02; basically 0.  I had a follow-up appointment with my functional medicine Dr. a week and a half ago; I mentioned that my hair seemed to be falling out more again.  She put in an order for me to have an extra blood draw for some hormone tests to be done at the same time. Obviously, I got my Lemtrada lab work back but I haven't gotten the extra test results yet.  My Neurologist's office called me on Friday because of the TSH level. They sent in a referral to see an Endocrinologist.  They also mentioned some additional blood work.  I did tell them that I should be getting some more results in; they are going to see what those numbers are before they order more.

I also talked to my functional medicine Dr. about medical marijuana and CBD for my leg spasticity.  Apparently, Texas does have a medical marijuana card system.  I use system loosely because you can qualify for a card but you can only get low level THC products which according to my Dr. is legally available without a card for the most part.  She did say that she really liked the idea of me using CBD and recommended I seek out a doctor who is more knowledgeable about it.  I did buy some CBD lotion from a dispensary here.  I hope it's better quality then the stuff you can buy at Family Video. 😉 I used it for about 5 nights in a row and I woke up one morning and didn't have any shakiness in my legs at all.  I noticed right way because it's been an expectation that I need to pause for a moment until my legs are ready.  It was only that one morning but I have noticed the shaking has been less. But the intensity has been up and down since it came-on in November.  Basically, the jury is still out on whether it helps or not.  She also mentioned a book to me that she has mentioned several times but I keep forgetting to look it up.  It's called Angle and the Assassin by Donna Jackson Nakazawa. I bought it but haven't started reading it yet.  It's about cell function.

My blood work results are posted.  I did not get the Lymphocyte subset done this month but my absolute Lymphocytes are still headed in the right direction.  I have a telehealth appointment with my new Neurologist this week and I plan to talk to him about continuing the subset.  I also want to ask him about getting a flu shot this year.  I am wondering if it's not advised since my Lymphocytes are still low.  I have other questions that pop into my head that I need to write down because I keep forgetting them.

Other things: I had to fill out new Lemtrada One-to-One forms because my Neurologist changed.  I thought it didn't matter because I was in the same clinic but apparently it does.  I started listening to a webinar on MS & Covid19 by the Rocky Mountain MS Center.  It was one of those things where you are sitting there 10 minutes early waiting for the webinar to start then something distracts you and now you are 15 minutes late. 🙄 In the first part they were talking about the statistics of MS patients surviving Covid and if they were on a medication, what medication; if they had other health issues, what health issues.  I watched about 10 minutes of it then they switched topics.  It's recorded; I am planning to go back and watch it.  Here's the link if you are interested.  The most interesting thing that I caught was that your Bcell level doesn't matter for survival.  They said the data showed you could have 0 Bcells and still survive.  I asked about information on Tcell levels but they didn't have any.

That's all folks.

Wish me luck with my thyroid. 🤞

Take care of yourselves.

Weeks 35 - 40 1/2 - Best laid plans

Weeks 35-40-1/2 Post Lemtrada

July 29, 2020

This post was supposed to be done the day after my "I am still alive" post but here I am; a week and a half later.  My daily to-do list for the last 4 weeks has included yoga, an online Spanish lesson and a blog post. Out of those three things I've done a Spanish lesson once and yoga maybe 4 times.  I am clearly not the best at prioritizing and very good at getting distracted by the thing that is in my face at the moment.  For someone who still spends most of their days at home hiding from other people, I don't get much of my 'want to do' list completed which is a little depressing honestly.

I've had two rounds of blood work done since my last post.  I posted my June results on my pages a couple weeks ago.  I'll post my July results today.  My Tcells made a good jump from April to May and then again from May to June.  They went up just a little between June & July.  My Bcells made a jump between May & June and only a little rise between June & July.  When I got my results back this last month, I was told that the metabolic panel and the lymphocyte subset weren't required anymore.  No one mentioned that to me so of course I asked why.  My new Neurologist said it was because my numbers have been stable.  My Absolute Lymphocyte number is now above the lowest normal range but my Tcells are only about 50% of the lowest normal range.  My other Neurologist did not mention only tracking my T & B cells for a certain amount of time so I am suspicious of this change but I guess I'll find out more at my appointment next month.

My MS symptoms are the same numb fingertips and bouncy legs in the morning.  I was thinking yesterday morning that my leg spasticity seems to be here to stay.  It used to be a precursor to another relapse symptom but it's been constant since it started after my Lemtrada treatment.  The severity of it is up and down but it's always around on some level.  I've also been noticing when I am laying in bed in the morning my legs will periodically stiffen.  It's upsetting to realize the medication has made certain things worse or it seems that way.  Other health stuff: I got my DNA/compatible medicines report. I am pretty much compatible with everything but I need to use caution with Morphine, Naltrexone and one of the statins.  Naltrexone caught my eye but my Doctor pointed out it was for full dose Naltrexone and I was fine because my dose is so low.  I am fine to keep taking Wellbutrin.  I didn't feel anything for the first 3 weeks of taking the Wellbutrin after that I felt a small increase in my energy and mood but now I feel like it's leveled off to "ok".  I have a follow-up appointment with my functional medicine Doctor in a couple weeks.  The other thing going on is embarrassing to write but this is a blog about my medical journey so here it goes...I mentioned I was having bladder issues which is a very common MS issue.  The Doctor I was supposed to see to have that urodynamics test called me because Covid cases in Texas were on the rise again (this is in late June) and I had left a message because I was concerned about going into the hospital for the test.  She called me to let me know she thought it would be better to postpone due to being immunocompromised but that she was concerned about the level of bladder retention shown in that quick test done at my neurologist's office.  Apparently, I was right on the border where it could cause kidney issues.  She sent me catheters. I was very upset and depressed.   Then I got on with it, figured it out, talk to the urodynamics doctor afterward and she determined I was ok without them but use them if I felt I needed to. Done writing about that.

Nothing like getting older and a disease like MS to keep you humble.

We left Texas and headed north at the end of June.  Covid cases were already starting to rise more quickly everyday by mid-June.  We weren't planning to go anywhere this summer because we didn't want to risk the exposure of driving/traveling but it was clear that it was going to be safer to travel to a smaller town then stay in Texas.  We laid low for two weeks after we got here to make sure we hadn't picked anything up.  We've been here for almost 5 weeks now.  Cases have been on the rise here since the 4th of July but there are less people so things aren't rising exponentially like they were in Texas.  I am still being careful.  Even though exposure is less likely and my immune system is stronger then it was when this all started, I don't want to take any unnecessary chances.  Pretty much you are fine here as long as you stay out of bars. 🤷We've been getting out for some hikes and we saw Comet Neowise.  I included a couple pictures I took; both are with a 4 sec shutter; the close-up is with a 300mm zoom. 

Take care & mask up!

I am still alive

Blog post coming soon...

Week 32-34 - Summer is here

Weeks 32-34 - Post Lemtrada

June 14, 2020

It's been a while since I posted...time keeps slipping by.  I am still self-quarantined even though the State of Texas has been in the process of "re-opening" for over a month now.  You may have seen on the news that there has been a spike in cases in Texas over the last couple of weeks.  There is more testing here but in the larger cities the increase is out pacing the increased testing and hospitalization rates have been going up over the last week.  I was feeling more comfortable with things for a minute but now I am back to being nervous.  Again, you just don't know who has it and the State government isn't requiring people to wear masks in public or allowing the cities to require or enforce it.  It leaves it up to businesses which then requires employees to enforce it so grocery stores that were once requiring masks are now rolling that back. Honestly, it is such a mess in this Country and in this State.  We are continuing to avoid stores by doing curb side pickup or having things shipped. If we do need to go to the store, we are being strategic about it and going when stores are less busy.

It's been almost 14 weeks since I started my newest round of self-isolating.  I am still keeping myself busy with projects around the house.  We are obviously cooking more so that in itself keeps us busy.  I've been continuing to do yard work but since it's been in the upper 80s/ low 90s or higher pretty consistently since the end of April; that is done in couple hour bursts in the morning or before sunset.  I realized that we have Virginia Creeper taking over an area of the backyard and climbing trees. :(  Getting rid of that will probably keep me busy all summer.  My latest entertainment has been a bird feeder.  I bought one that's basically just a tray that hangs from a tree branch and bought a mixed bag of bird seed.  I need to get myself some binoculars but I've seen Morning Doves, Northern Cardinals, Carolina Chickadee, Blue Jays, some type of Wren, and I think a Tufted Titmouse or a House Finch, I can't really tell.  I've seen Swallows flying overhead.  The Northern Cardinals apparently live in ours or our neighbor's backyard because I've seen them often all spring.  There are three males that chase each other around the yard and I think only one female.  Since we've gotten the bird feeder, I've also noticed that Northern Cardinals are racist. I've seen a Morning Dove, a Wren and a Finch eating together at the same time but the Cardinals will only eat with other Cardinals. ;) Actually, I've noticed a lot of birds do this "dance" around the bird feeder where they fly to the tree and wait their turn.  It's kind of funny.  That would be one of the perks of this pandemic; being able to slow down enough to watch nature.

I've had several things going on in these last three weeks. I had a virtual appointment with my Functional Medicine Doctor about 2.5 weeks ago.  We are making some tweaks to my supplement regimen, I did a DNA test to see how my body metabolizes certain medicines (cheek swab) and she started me on a low dose of Wellbutrin.  The test will determine other medications too but we are primarily doing it to see if Wellbutrin would even help.  I think I said this in my last post that my energy level has been all over the place since March; I know everyone's has with the stress, anxiety and uncertainty we've all been under but overall it's definitely up since I started the DHEA.  My mood on the other hand is still just "blah". So we are trying the Wellbutrin which apparently can take 5-6 weeks to work and the test. Just another dart...we will see if it helps. It's been almost 3 weeks and so far not much.

I went into the office to do the cheek swab instead of mailing the sample back and forth and in the first week of June; I had to go in for my 6-month skin check (all good) and I had to go to the Dentist.  Going into a medical office seems like the lowest high-risk thing you can do right now.  At least you know that they are taking precautions seriously.  For both my dermatology appointment and my dental appointment, I needed to call them when I arrived and sit in the car until they were ready with a room. Of course everyone had masks and the doctors had face shields on as well.  Everything else has been video or phone calls.  My next in person thing will be my next lab work this coming week and then I am supposed to get a pelvic scan on the 1st but we will see if that actually happens.  If hospitalizations continue to rise, I can see them postponing non-essential medical procedures and tests again.

I got some disappointing news a couple weeks ago.  My neurologist is leaving. The clinic I go to is part of a University hospital so apparently he'll be there until the end of the year but he isn't working in the clinic after the end of June.  He's the guy who convinced me to do Lemtrada.  His experience with it is the reason I said "yes".  We moved to Texas 11 years ago and this new Doctor will be my 4th neurologist since I moved here.  The first two guys retried on me.  They were neurologists, obviously, but not specialists in MS.  At least I'll be working with another Dr. who specializes in MS and he's a younger guy so hopefully he won't retire any time soon.  I don't know if that's typical to need a new neurologist every 3 years but it isn't easy to find one who's personality you mesh with and someone you trust.

Let's see...what else?  No changes in my fingertips. :(  My legs have been better the last couple weeks.  They still are a little unstable first thing in the morning but I can keep walking instead of needing to pause.  My stomach was giving me some issues the last week in May and first week in June.  I was trying some digestive enzymes so I think that was part of it but something I ate made my stomach more sensitive in general.  I made some gluten free peanut butter cookies so maybe the extra peanuts? Or maybe the extra sugar?  We've been baking more than normal but honestly it hasn't been that much.  Emotionally, I've been a little bit of a roller coaster the last couple weeks and especially the last week; I've been more weepy and have bursts of anger that aren't typical for me.  Well, it usually takes a lot more to get me angry then it has been.  I need to remember to mention that to my Function Med Dr, maybe the Welbutrin? ...always some mystery to figure out.

That's all I have for now and this has been a long one so I am sure you've had enough.  I am going to leave two links for some homemade face masks.  My son and I made the first one out of old T-shirts but we used a bead to make the straps adjustable like in the second one.  I guess the WHO is now recommending 3 layers so you'll need to add an extra layer and ours aren't in compliance. 😷🤷 Emojis are back! 🥳

Take care, stay safe.

https://www.youtube.com/watch?reload=9&v=8cdFhw12-nE

https://www.youtube.com/watch?v=-t_Gz3lGwF8

Weeks 30 & 31 - Eleven weeks in

Weeks 30 & 31 - Post Lemtrada

May 24, 2020

I've been self-quarantine-ing for eleven weeks now.  I am not sure how the time has gone by so fast. Slow but fast at the same time.  I can't believe it's going to be June already next week.  My total outside people interactions include: a trip to the pool supply store, a trip to the string shop for my daughter, three trips to Quest for monthly blood draws, a curbside pick-up of mulch and a basil plant, a drive through pick-up of prescriptions and a curbside pick-up of groceries. Four of those interaction have been in the last week which gives you an idea of how little interaction I've had with people outside of my family.  We've had food delivered but even delivery people are now leaving things on the porch.  My husband went to the grocery store a couple times but mostly we've been doing curbside pickup and he's been doing the pickups.

I've had some good news; I got my latest blood results last week (I posted them on my pages) and my T-cells are continuing to go up at a pretty decent rate. I am at about 29% of the lowest normal level, last month I was 21%.  My overall white blood cell count is down a bit and my Eosinophils (another white blood cell) is a little high. I asked one of my neurologists about that and he said that it's something they will keep an eye on but that they have noticed Eosinophils can spike and that at this point it wasn't anything to worry about.  My B-cells are behaving and are at the same level as last month so no need for more steroids at this point.  Oh, my platelets were a little lower than normal.  My platelets tend to bounce around at the low end of normal but they had been closer to 200 the last couple of years.  My neurologist said that I should keep an eye out for signs that they are getting really low.  Things like little red dots on my skin, bleeding gums or bruising easily.  We first discovered my platelets were low a little over 10 years ago during a routine work physical.  They couldn't figure out why they were low; I even had a bone marrow sample taken to make sure I was producing them correctly and that was fine.

Thinking about the bone marrow aspiration makes me feel like my health had a definitive turning point. When I had my second baby, I had been in the hospital a total of three times in my entire life.  I had my tonsils removed when I was in middle school and for two births.  I never went to the doctor for anything.  It seemed to hit me all at once.  Six months after my son was born, I had my first MS symptom. A few years later they were checking my bone marrow for platelets and some time around then I slipped two disks in my back and had pain shooting down my leg (thank goodness that went away with PT).  No one in my biological family that I know of has MS.  It makes you wonder what I did to trigger it?  I grew up in the same polluted area the rest of my family did.  I didn't eat any worse then the rest of America does.  I had two babies within two years but three of my cousins and my sister have kids that are two-ish years apart.  I don't know?  I am not feeling sorry for myself; it's kind of interesting and kind of doesn't make sense.  There is a study out there that links MS to the Epstein-Barr virus. I never had Mono that I was aware of.  Who knows? Maybe one day we will.

Other than that things have been ok.  My fingertips and legs are the same.  My legs are still wobbly every morning.  I have to put my hand on the wall while they do their thing and then when they are done, I move on with my day.  My fingertips are the same numbness. I have noticed that I've been a little more scattered again and more easily distracted than normal but like with my energy level, it's so hard to tell what is causing what.  My sleep still isn't very regular either.  Other than that I haven't noticed any other symptoms.  My mood has been a bit low and I've been a bit weepy.  I've been really concerned about how things "move on".  We can't stay hermit-ed forever.  There is a business to run and it appears the kids are going back to in-person school somehow.  I've been reading articles about risk of coronavirus infection with different activities and I've talked to my doctor and I still can't assess/wrap my head around my risk.  We are just going to have to do what we can to keep ourselves from contracting it and hope for the best.  I am scared and that's what is making me upset but really, there isn't any other way around it.

That's all I've got for now. I'll leave you with a few articles and a blog post that I found helpful or informative. Stay safe and for everyone around you, please wear a mask. :)

Blog: The Risks - Know Them - Avoid Them

From Camping To Dining Out: Here's How Experts Rate The Risks Of 14 Summer Activities

If 80% of Americans Wore Masks, COVID-19 Infections Would Plummet, New Study Says

From October...mask OG

Weeks 28 & 29 - Quarantine your Mother

Weeks 28 and 29 - Post Lemtrada

May 10, 2020

Blogger made some changes to it's layout and it's taking me a while to figure out where everything is.  It's been 60 days of quarantine-ing.  We've celebrated two birthdays and mother's day; next week will be birthday number 3.  I've heard of some creative "social distancing" birthday parties but we are pretty boring so there is nothing creative going on here. In the party sphere anyway.

I haven't been writing much; not even notes to myself.  I think I've gotten to the point where rehashing brings me down.  Also, it goes against the 'being in the moment' mantra.  I've been reading and listening to fiction lately just to think about something else.  I've also been doing a little yard work, watching a movie or non-news TV shows and we've been breaking out the board games.  Fun fact that my husband shared with me: board games became popular during the depression when people didn't have money to go out for entertainment.  We've been talking about habits that will change after this like habits that changed after the Great Depression.  I think one thing that will change for a little while is that more people will start gardening and/or having a home chicken coop.  Urban chicken coops were already starting to get a little popular.

So I don't really have any notes to remind myself of what's been going on for the last two weeks.  I can tell you that I had a telehealth appointment with the PA from my neurology office.  We talked about my next MRI, Vyvance, my immune system/blood levels, the pandemic and my next Lemtrada infusion.  I had made a list of questions and "when will I need a new MRI" was on my list.  I am actually due for one now.  They like to do them 6 months after a new treatment is started to get a baseline but because of the current situation and because I am not having any clinical progression, she is recommending that we wait.  She said it wasn't worth the added risk right now.  My second infusion of Lemtrada is going to be a 'wait and see' situation as well.  I stopped taking Vyvance for now and we are going to see if it has any effects on my bladder and how much negative effect it has on my fatigue.  She is happy with the way my blood results are going (I have another one next week, already).  I asked about my immune system levels.  I was wondering if there was a certain number that I needed to hit with my Tcells to feel safe or more protected.  The answer is "no" to a certain number.  She said that now that I am over 100 on my CD4s (helper Tcells), she isn't as worried about me but everyone is a little different with how their cells react/fight off viruses.  She said I still need to take all the precautions everyone else is taking (washing hands, maintaining distance, etc) and that it was important to continue to take my Valcyclovir everyday.  She also pointed out that we are learning more everyday and hopefully in another month and definitely by October we will be able to better judge my risk.

Our state Governor started "reopening" the economy at the beginning of the month.  First restaurants and stores were allowed to open at limited capacity and following certain rules (according to a local newspaper, very few are complying completely or at all).  Last week salons and gyms were allowed to reopen.  I don't have a problem with slowly reopening things.  It has to happen sooner or later but it would be nice to know how many asymptomatic people are out there and to have a way to discover another outbreak before it shows up in hospitals.  As a Country, we have no plan. "It's just time to reopen". Our state has a plan but they aren't even following it.  Our 7 day average for cases was dropping in mid-April.  We had about a two week drop in case average (we still aren't testing enough people though) then around April 24th it started rising again and now it's higher then we were at our original peak in early April.  But golly there were protests of a couple hundred people who also had to bring their guns so we are reopening the economy anyway.  I will also point out that the original protest was on April 18th and 3 days later daily cases were on the rise again.  Coincidence? Maybe?

If you are wondering if I was planning to go out to dinner sometime soon, the answer would be "hell, no".  We might know more about the virus in general but we still have no idea how prevalent it is in the community and the United States is too full of morons who feel wearing a mask to protect others is too much of a burden on their personal freedom.  Sane people out number the morons but it only takes one infected moron to infect the rest of us.  I will continue to do my shopping by delivery and curbside pickup and I will continue to be very grateful to those people providing these services.  Sorry, if I was overly harsh to morons or if you are one but I have no tolerance for selfishness or those who ignore experts and science.

Huh...well, I know this will make everyone very sad but Blogger doesn't seem to have emojis anymore. :( I guess I'll leave you with pictures then. I've had a digital camera for about 10 years now and I am finally getting around to messing with the settings. Enjoy! ;)

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)

Week 23 - Dodged a bullet...for now

Week 23 - Post Lemtrada

March 29, 2020

Another week that felt like a month.  The week started with good news, my husband tested negative for COVID-19! We definitely dodged a bullet there.  He had traveled domestically so we were already keeping our distance. He started having headaches that didn't go away and feeling fatigued.  He thought it was stress and/or being tired from traveling but was still checking for a fever and never had one.  A week later he still wasn't feeling great and read about a NFL coach who tested positive and his only symptoms were a headache and fatigue with no fever.  He contacted our doctor; she had received some tests and wanted to see him and maybe test him.  He went to her office but stayed in his car.  She came out in full PPE.  She checked his blood pressure, temperature, etc.  No fever still but he did have swollen glands.  She tested him for COVID-19, flu (negative) and strep (negative).  She gave him a mask and told him to act as if he was positive.  She also told him it would be 2-14 days before he got results because the labs were backed up.  For three days, he was isolated to either our bedroom or the office.  I cooked and he ate in the office.  I kept telling myself it had to be something else; we were being cautious in the house but not perfect and with my low immune system, I would have come down with something in the week he wasn't feeling good.  Plus the two people he traveled with weren't showing any out of the ordinary symptoms.  It was extra difficult for a few days but then we knew for sure he was negative and I was able to sleep back in my own bed! 😁 Our doctor did send in a culture of his throat swab.  We found out on Thursday (almost a week later) that he did have some strep and other bacteria but since he was feeling better by that point she didn't prescribe him any antibiotics.  It was a good thing that we had stayed away from each other for that week.  I would have caught something.

Our doctor recommended that anytime any of us go out that we should wear masks. Some of my neighbors are sewing face masks to donate to hospitals for use with non-covid19 patients.  You need a N95 face mask to protect you from virus already in the air but if we all wore any kind of mask it would make things safer.  It would help keep the virus from getting into the air by those who don't realize they have it and keep people from touching their nose and mouth.  Numbers are spiking all around the US; I am ready to just stay put for a while and not come in contact with anyone else if possible.

This week our weather was unseasonably and record setting warm.  Two nights in a row, I woke up several times during the night sweating.  The AC was on so it didn't really make sense that I would be sweating but I wasn't running a fever so maybe it was hormones?  The only other thing besides the temperature outside that changed was that I ate a little gluten.  I've never noticed that gluten affected me like that but now I'll have to pay more attention.  I thought about doing a mid-week blog this week since my last post was so long but aside from the test results news; it's been a quite week.  Our county went under a Shelter-in-Place order on Tuesday night.  We still had people hanging out at swimming holes. 🙄 The number of cases in our county has been going up pretty steadily this week and the numbers lean more heavily 20-39 year olds.  That is either due to being a college town and having a younger population in general and/or younger people feeling more invincible.  🤷 I read about a 27-year old women in the area who got really sick; no underlying health issues but she had difficulty breathing and described it as feeling like she was drowning.  I read a post about a 60-year old man and his 54-yr old wife who were very sick as well but still able to take care of themselves at home.  He said they had never been so sick.  All three were sick, thought they were getting better then it hit them hard again.  It took about two weeks for them to really turn the corner.  It's a little scary that some younger people are getting hit so hard and even dying; a 44-year old man who lived in a city near here died and apparently had no other health issues but Rand Paul who had part of his lung removed had no symptoms at all.  I tried to search to see if he had any symptoms come up later but there is no news on him after he tested positive.  It makes you wonder if there are different strains.

Symptom-wise: my energy level was lower for a few days when I wasn't sleeping well but the weather got cooler over the weekend and as soon as I was sleeping better, my energy also went up.  I noticed last week that my hair isn't falling out as much.  That's been going on for a few weeks but I just hadn't really noticed.  I did notice two spots at the top left and right of my forehead that have little pieces of hair growing back in.  It's funny, that's where I noticed hair growing back 6 months after my kids were born.  My fingertips are the same; my legs are a little worse only because it's every morning now but not any stronger.

Other than that we are just trying to hang in there like the rest of the world. Trying to enjoy the extra family time we have without also killing each other. 😉  There are perks, like your kid baking and bringing you beautiful cupcakes.

Take care

Week 22 - The Surreal-ness Continues

Week 22 - Post Lemtrada

March 22, 2020

I kind of have a lot to say today so if this starts to get long winded, I'll help you out by putting a meme in the middle of this.  😜  I slept like garbage last night.  I stayed up a little too late reading and then I came across a Washington Post request for submission. I decided to write that so I wouldn't be writing it in my head all night but then I was editing it in my head so I kept sitting up to take care of that and quiet my mind down but then I started writing this blog in my head!  I think it was almost 5am before I was actually able to drift off to sleep.  I did not give in and write this blog at 4am.  I just tried to think of music or something else.  I woke up at 7:30; just know, if this post goes off the rails it may have something to do with less than 3 hours of sleep.

This has been one of the longest weeks of my life.  Even longer then spending five 8-hour days in an infusion chair.  It feels like two months have gone by and I have to remind myself that it was actually only two days.  Before I get into the craziness of the Covid-19 aka the Coronavirus, let me start with my new blood work.  I went on Tuesday (I double checked it was actually Tuesday).  I wore a mask and so did the phlebotomist.  I also brought gloves with me and wore them when I went into the bathroom to collect my sample.  Before I came into the room she wiped down the chair and she had me swipe my credit card so she didn't have to touch it.  There was hand sanitizer in the room and I used it after each time I needed to sign confirming the labels were correct. There wasn't anyone else waiting when I walked in and only one person in the lobby when I walked out so I didn't have to come into contact with anyone else or sit in a crowded lobby.  I got most of my results back on Wednesday and the rest came in on Thursday afternoon.  They all looked good for where I am at.  I've posted them on my 'pages' if you are interested in looking at the numbers.  I get two counts of my absolute Lymphocytes.  One is part of the CBC and one is part of my Lymphocyte subset.  I got the CBC results back first and it had my Lymphocytes at 853 and the lowest normal level is 850, I was pretty excited.  Lymphocytes are the part of your white blood cells that fight infections.  Thursday I got the Subset back with my T & Bcell counts.  My absolute Lymphocyte count there was 816 so back below normal but it's getting there.  That count is probably more accurate because it's processed differently and seperates the cells out more.  The two counts are usually off a little bit but it's normally less than 10. I am a little surprised the counts are so different.  The good news about the Subset is that my Bcells didn't change at all which is great because that give my Tcells a chance to catch up and my Tcells made a pretty good leap.  If you total all three types of Tcells together they increased by 88 cells.  It doesn't seem like a lot but it's the biggest jump my cells have made since Month 1 post Lemtrada.  I am 16% of the way to the lowest normal level but if you look at my pre-Lemtrada numbers it's a little sadder; I've only gotten back 6% of the Tcells I used to have.  I will take just a low end of normal protection over no protection.

I think I've talked about blood long enough.  Blood and veins, not something we usually talk about in my house.  There are a couple squeamish people who live here and I won't mention any names but it's not me.  😈  I don't usually talk about my day-to-day that doesn't include health stuff not because I think there is anything wrong with blogging that way; it's just that I am a pretty private person in general.  I've exchanged several emails this week with Tracy, who I mentioned in a previous blog post.  She's the British bird who did her first round of Lemtrada almost 5 years ago.  Sorry Tracy, all my British slang comes from Austin Powers and Doctor Who. 😉🤗 Blog link.  I love reading Tracy's blog because she just throws it all out there; I also love that she has kept up with it this long.  It's really important for Lemtrada patients in general and MS patients overall to see how someone else's journey is going even though everyone's journey is different.  I had tried to reach out to her once before but Safari doesn't seem to play nice with Blogger and it wasn't letting me respond.  I found her email this time and decided to try again because she mentioned that she was scheduled to try a new MS medication called Ocrevus and I wanted to ask her about it.  Lemtrada works to "freeze your MS" meaning that you should not get any new lesions or new symptoms.  Obviously, nothing is 100% but that's what Lemtrada is supposed to do.  When I was picturing the "freezing", I was thinking that your current symptoms would stay the same.  Some people see improvement but mostly what you have is what you have and I thought it probably wouldn't get better but it wouldn't get worse either.  Well, apparently that's not really the case as Tracy has been finding out.  She does not have any new disease progression but her old symptoms have been getting slowly worse over the year and got to a point that it was obvious.  Ocrevus, which I had only heard of recently on MS World's forum, works on your current symptoms.  I haven't read into it at all but from what I understand it's an infusion also.  So there it is...one more potential thing that I may have to consider in the future.  It's good to reset my expectations that way I am not shocked if I do need another medication.  It's been really great to connect with Tracy.  I haven't had a chance to connect with anyone else who has taken Lemtrada.  I had tried on the MS World message boards but never got a response.  Most of the Lemtrada messages were pretty old.

Well, on to the next topic...Covid-19.

There you go...a haha before we head into the next not so fun topic.  Inspired by Tracy who put a handy coronavirus adaptation meme in her blog and sent to me by my husband.  Take a look at her blog for an additional smile.  I mentioned before that this week seemed like a year...it just did.  This was spring break for my kids and they had some fun plans but ended up spending the whole week locked in the house with their, very young and fun but still are, parents. 😼  On Monday, we got an email from the school district that school would be closed until at least April 3rd and that they would be working on an online school system in case physical school couldn't start back up on the 3rd (it's not going to).  On Tuesday, the city we live in announced that all restaurant dinning room service and bars needed to close and that social events couldn't be more than 10 people.  My book club has more than 10 people some months (which we are actually going to do virtually this week 📚🤓).  I don't think I've mentioned before that my family owns a restaurant so it was a very tough week.  We had already decided to go carry-out only.  We were seeing a higher and higher percentage of our sales going to carry-out over the weekend and it was the right thing to do.  So we closed on Monday to reorganize and talk with managers and staff and re-opened on Tuesday evening for "no contact" carry-out only with a lot less staff.  We had to lay-off a lot of staff which is never something you want to do and we had to look at our own finances and figure out what needed to be done personally with less money coming in.  If things stay the way it is now, we should be able to keep the doors open.  Hopefully, if a full "shelter-in-place" happens it won't last long or maybe we can start doing delivery.  In the back of my mind I feared a recession, a pandemic that shuts down the world was not even on my radar.  Maybe it should have been, we have enough movies about it. 😷

So it's been a horrible but survivable week. I've been journaling every night for the last 5 nights and checking the Johns Hopkins tracking website at about 11pm every night.  I knew the exponentially growing number of cases would happen because we are just starting to increase testing and there are still shortages of tests.  Some states are saving tests for first responders and medical staff because they just don't have enough and are diagnosing patients by eliminating the flu and x-ray. What has been most disturbing is the number of deaths that have been reported in Italy over the last week.  I think they have report around 700 deaths per day for the last 4 days.  It really is shocking.

I am just sitting here watching it happen through my laptop.  In a sense it's very real, the ramifications are affecting our business and causing me to be stuck in the house again. In another sense, it's happening somewhere else and I am just watching it.  I am worried about family that we don't live near.

Tracy mentioned that she is on a 12-week mandatory "lockdown" because she has MS and is considered high risk. She's working from home and so is her husband so that he doesn't unintentionally bring it home to her.  I was thinking that this is my 3rd time I've been confined to the house in the last 13 months.  Last year in February I had surgery on my nose to fix my deviated septum.  It was something I had been wanting to take care of for over 10 years and never got around to it.  They had to break it and the bruising was so bad that I looked like I had been beaten within an inch of my life.  I caught a glimpse of myself in the mirror at the hospital and started crying; I was very high but I looked like a monster.  It took a very long time for the bruising to go away.  I spent the majority of 6 weeks around the house.  Only going out if I couldn't avoid it.  Then of course this winter because of Lemtrada and now again because of Lemtrada and Covid-19.  I am not really sure when I'll be able to leave again. 🙈 I've already decided that I am not going to do my second Lemtrada dose until they have a vaccine.  If I am honest with myself, it won't be safe for me to be out and about until they get the spread of the virus under control and that depends on how aggressive they are going to be. 😢

One last thing...thanks for sticking with me if you made it this far.  My symptoms: I haven't been sleeping very good but I am not overly tired; my fingertips haven't changed much and my legs are back to noticing some days and not others.  

I will end with something that a friend shared with me that might help us make it through. Happy Hibernating! 🐻😴