My Life with Multiple Sclerosis 053022

Good Morning, Possums, from the Celebrity Wing of the UT Southwestern SPA and Resort.

I remain here in the hospital - not sure for how much longer.  Yesterday, I had an IV drip of antibiotics, a 3-hour MRI and  Plasma Exchange.

Today, I’m having another antibiotic IV Drip and Plasma Exchange and there’s been talk of starting my chemo treatment. I hope to find out today.

I need my laptop and some clothes from my casa if I’m going to be here longer.

Anyhoozle, I wish you all a Spectukar day.  Be nice. Be well.  Be Happy!

Peace, love and blessings to you all.  -AJ

My Life with Multiple Sclerosis 052922

Good Morning, Possums, from the Celebrity Suite of the Wyndemere Condominiums on Turtle Creek in Dallas, Texas. Today is Sunday, May 29. It’s going to be a bright, sunny day in Dallas today with a high of 94.

Happy Birthday to:

Deborah Harrison Upton

Melissa Lonneman Arrambide

Monty Kehl

Warren France

Another beautiful, hot day in Dallas today; an almost exact duplicate of yesterday. My day yesterday is a bit of a blur. Between PLEX on Friday and a little change in my MS meds, I was napping on and off all day. As nice as that was, I may be switching back to my old pill regimen. LOL

Today is Day #2 of the 3-day weekend and the possibilities of what to do are endless. Between naps yesterday, I allowed myself to think how ‘limited’ my life has become and is becoming. Well, that’s bullshit! It is as limited as I make it. I may not be able to do everything the conventional way, but there is another way - I just have to figure it out. It may take a little longer and require some extra effort, but I will figure out how to cross each bridge as it approaches. LOL - Have we met? I’ll probably call Uber.

I’m going to church this morning and maybe meet up with some friends this afternoon. Getting out of my casa sounds very nice after being inside all day yesterday. At some point I need to start scheduling things for NYC. What this means is I haven’t put everything into a spreadsheet by day and time to see where the free time falls. I like to refer to that free time ‘scheduled spontaneity' - anything is just a cab ride away in NYC. The fact that I like scheduling things and putting them in Excel is just an added bonus.

What’s on your schedule today?

Anyhoozle - I wish you and everyone around you a SPECTACULAR day. Do everything today with kindness in your heart. Choose to be nice and say nice things!

...wear a mask (when appropriate)

...be kind and compassionate to one another

...dance/sing/laugh it out. It might not help but it sure as hell couldn't hurt.

Peace, Love and Blessings to you all. -AJ

#strengthpatiencepeacefaith

#hopelovejoygrace

#AndyStrong

My Life with Multiple Sclerosis 052822

Good Morning, Possums, from the Celebrity Suite of the Wyndemere Condominiums on Turtle Creek in Dallas, Texas. It’s going to be a sunny day in Dallas today with a high of 94.

Happy Birthday to:

Eugenia Matthews

Jay Box

Nancy Faulkenberry

It’s here - a three-day weekend. It is ashamed that I will be kicking mine off a bit slow. PLEX yesterday went went - no issues other than running out of my #AndyStrong bracelets. I took and gave out three of them yesterday but word got around and all my nurse friends dropped by to get one. Note-to-self: Take ten next week. LOL.  

I expect today will be the usual post-PLEX day of getting a few things accomplished and a nap here and there (I’m OK with that).

SHOUT OUT to my Dallas Titans playing the the Minneapolis Softball Tournament this weekend. Good Luck, Guys!

What’s on your schedule this weekend?

Anyhoozle - I wish you and everyone around you a SPECTACULAR day. Do everything today with kindness in your heart. Choose to be nice and say nice things!

...wear a mask (when appropriate)

...be kind and compassionate to one another

...dance/sing/laugh it out. It might not help but it sure as hell couldn't hurt.

Peace, Love and Blessings to you all. -AJ

#strengthpatiencepeacefaith

#hopelovejoygrace

#AndyStrong  

My Life with Multiple Sclerosis 052722

Today is Friday, May 27.  It’s going to be a sunny day with a high of 89.

Good Morning, Possums, from the Celebrity Suite of the Wyndemere Condominiums on Turtle Creek in Dallas, Texas.  

Happy Friday.  Happy FriYAY.  And Happy Memorial Day Weekend.

 

Happy Birthday to:

DJ McQaude

David Murray

Rosemarie Gonzales

Sam Harper

It’s here - the rarely seen and quickly fleeting 3-day holiday weekend.  WOOOT!  I have nothing planned (which I do NOT find problematic).  OK, maybe a little work.  I have a lot going on at work right now.

My neurologist called me yesterday morning to check on me and to let me know she is presenting my case to the Doctors.  All of the neurologists meet once a month to discuss their most difficult cases and I am #1 - I WIN.  I have broken through 3 protocols so far and they will come up with my new treatment plan which already includes one, possibly two, rounds of chemotherapy - possibly starting in the next two weeks.  

They do not do chemo very often.  It is sort of a last resort before switching to a completely different protocol.  They will discuss a different protocol as well if they think that is more of a viable option.  She said she is trying to get it all done well before my trip to NYC - she’s the best.

But today…today I have NO work meetings.  The only thing on my calendar is a trip to the UT Southwestern Spa and Resort for Plasma Extraction/Infusion (PLEX) and hopefully a nice nap in the process.

After that, the weekend is mine.  There is probably going to be a little work in there - and that’s fine - but I also think there may be a massage, a trip to the Boardroom and possibly a mani / pedi.

What’s on your schedule this weekend?

Anyhoozle - I wish you and everyone around you a SPECTACULAR day.  Do everything today with kindness in your heart.  Choose to be nice and say nice things!  And as always:

...wear a mask (when appropriate)

...be kind and compassionate to one another

...dance/sing/laugh it out. It might not help but it sure as hell couldn't hurt.

—and if you can’t say anything nice about anyone…come sit by me! (Clairee Belcher, Steel Magnolias, 1989). 

Peace, Love and Blessings to you all.  -AJ

#strengthpatiencepeacefaith

#hopelovejoygrace

#AndyStrong 

My Life with Multiple Sclerosis 052622

Good Morning, Possums, from the Celebrity Suite of the Wyndemere Condominiums on Turtle Creek. Today is Thursday, May 26. It’s going to be a sunny day in Dallas today with a high of 84.

Happy Birthday to:

Genie Velez Haynes

It’s Friday Eve! The three-day weekend is within reach. Having a three-day weekend and no plans whatsoever is sounding pretty good right now.

I have had two wonderful neuropathy-free days and that has come to a tragic end. It’s off the charts today and my walking is not that great either. Sounds like it is time for PLEX. Tomorrow at noon needs to get here - PRONTO!

Only one meeting today. I’ll take that over the eight I had yesterday - LOL.

What’s your day like?

Anyhoozle - I wish you and everyone around you a SPECTACULAR day. Do everything today with kindness in your heart. Choose to be nice and say nice things! And as always:

...wear a mask (when appropriate)

...be kind and compassionate to one another

...dance/sing/laugh it out. It might not help but it sure as hell couldn't hurt.

—and if you can’t say anything nice about anyone…come sit by me! (Clairee Belcher, Steel Magnolias, 1989).

Peace, Love and Blessings to you all. -AJ

#strengthpatiencepeacefaith

#hopelovejoygrace

#AndyStrong

My Life with Multiple Sclerosis 052522

Good Morning, Possums, from the Celebrity Suite of the Wyndemere Condominiums on Turtle Creek. Today is Wednesday, May 25. It’s going to be a partly cloudy day in Dallas today with a high of 71.

Happy Birthday to:

Darin Hustead

Leith Wewe

We finally got some rain - lots of rain - ‘the streets were flooded’ rain. Also, we had a pretty decent light show last night with the lightening and the thunder. It was relaxing for me (because I wasn’t out in it and I didn’t lose power) but not so much if you had to be outside.

Well, it’s Hump Day and we have made it half way through the week. That three-day weekend is almost here. I have no plans except to relax and enjoy it……and probably a little work as well.

Today marks two days in a row my hands feel almost like normal hands. My neuropathy is still on the low end of the scale. I cannot explain it, but I will not complain about it either. I will enjoy typing, using a mouse, a remote - anything electronic without it feeling like my fingertips are being stuck with incredibly sharp needles with every touch.

Oh MS, you are a crafty one - silent, unpredictable and indestructible - and quite frankly, most days, a pain in my ass.

I think my walking is a smidge better today as well but I will not be able to test that too much - I have eight (8) meetings today. So much for getting any work done.

What’s your day like?

Anyhoozle - I wish you and everyone around you a SPECTACULAR day. Do everything today with kindness in your heart. Choose to be nice and say nice things, but if you can’t say anything nice about anyone come sit by me! (Clairee Belcher, Steel Magnolias, 1989)! And remember:

...wear a mask (when appropriate)

...be kind and compassionate to one another

...dance/sing/laugh it out. It might not help but it sure as hell couldn't hurt.

Peace, Love and Blessings to you all. -AJ

#strengthpatiencepeacefaith

#hopelovejoygrace

#AndyStrong 

My Life with Multiple Sclerosis 052422

Good Morning, Possums, from the Celebrity Suite of the Wyndemere Condominiums on Turtle Creek. Today is Tuesday, May 24. It’s going to be a rainy day in Big D today (at some point) with a high of 79 and lots of thunderstorms. YAY!

Happy Birthday to:

Darnell Williams

Elizabeth McCraw

My trip to the Neurologist yesterday was pretty OK. While I did not get the answers I was expecting, I did get some good information regarding the formation of a plan of attack.

At UT Southwestern (in the Neurology department), the doctors meet once a month to discuss cases; in particular, problem / challenging cases. For instance, they would discuss (what they think would be) the best treatment options / plan for someone who has broken through three protocols in the last two years. (FYI - that’s me). Yep - I am their #1 problem child / case and the entire department will be discussing and creating my next treatment plan.

More than likely, though my doctor is still on the fence about it, I will have only one round of chemo to start (possibly two), to get my immune system to settle down. This will happen in either June or in July when I return from my vacation. After that, my doctor still wants me to finish the second and final round of my current treatment which will take place in September and October.

I have also been advised to get the COVID booster before I go to NYC but I have to do that on a Saturday after PLEX on Friday - I’m already exhausted! AND….I get to have another three hour MRI in July / August. This does not make happy.

My walking is still not better but my neuropathy is all but non-existent. My hands almost feel like normal hands. My legs are not tingling. I don’t feel like I am vibrating from the inside out. This hasn’t happened in a while but I’m not going to complain.

So what I got out of all that is I am the #1 Problem Child in the Neurology Department at UT Southwestern. LOL

Only two meetings today and a lot of other work. What’s your day like?

Anyhoozle - I wish you and everyone around you a SPECTACULAR rainy day. Do everything today with kindness in your heart. Choose to be nice and say nice things! And as always:

...wear a mask (when appropriate)

...be kind and compassionate to one another

...dance/sing/laugh it out. It might not help but it sure as hell couldn't hurt.

—and if you can’t say anything nice about anyone…come sit by me! (Clairee Belcher, Steel Magnolias, 1989).

Peace, Love and Blessings to you all. -AJ

#strengthpatiencepeacefaith

#hopelovejoygrace

#AndyStrong

My Life with Multiple Sclerosis 052322

Good Morning, Possums, from the Celebrity Suite of the Wyndemere Condominiums on Turtle Creek. Today is Monday, May 23. It’s going to be a cloudy day in Big D today with a high of 73 and a chance of thunderstorms right around my bedtime. YAY!

Happy Birthday to:

Chad Ehmke

Greg Haynes Johnson

Jacey Lett

Liz Turner Lynch

It’s time to kick off another work week. However, this time we are gunning for a THREE-DAY WEEKEND. We haven’t had a holiday since February. Not that I have huge plans for Memorial Day Weekend, but it’s a three-day weekend.

Have my appointment with my Neuro’s PA this afternoon. Lots of questions to ask and answers to get (I hope). My neuropathy was nearly non-existent yesterday. WTH? I am not complaining, mind you, but I wish I understood how it does that. Again, I think stress has a great deal to do with it.

For example…

Yesterday / last evening, I was with my friends feeling nothing but love. They all watch out for me and take such good care of me. But this morning, it woke me up and stayed with me on my commute to work (about 5 feet). It is still quite prevalent.

I rest my case. No matter! Making a plan today and getting some answers.

Anyhoozle - what’s on your schedule today? I wish you and everyone around you a SPECTACULAR day. Do everything today with kindness in your heart. Choose to be nice and say nice things! And as always:

...wear a mask (when appropriate)

...be kind and compassionate to one another

...dance/sing/laugh it out. It might not help but it sure as hell couldn't hurt.

...and if you can’t say anything nice about anyone…come sit by me! (Clairee Belcher, Steel Magnolias, 1989).

Peace, Love and Blessings to you all. -AJ

#strengthpatiencepeacefaith

#hopelovejoygrace

#AndyStrong  

My Life with Multiple Sclerosis 052222

Good Morning, Possums, from the Celebrity Suite of the Wyndemere Condominiums on Turtle Creek. Today is Sunday, May 22. It’s going to be a cloudy day in Big D today with a high of 68 and a pitiful chance of rain.

No birthdays on my calendar today.

Can you believe it? We are inching closer to the end of May. The year may start off slow as molasses but it sure does pick up speed as the months go by.

Yesterday was spent doing some work and some laundry and I started binging ‘Ray Donovan’ from the very beginning. I have never seen it before and I am already hooked.

My neuropathy has become less of an issue as of yesterday afternoon and today (so far). I think the issue is stress: stress about my upcoming chemo, work stress and even stress about my upcoming vacation trip. I know that last one (in particular) is more of a first world problem, but stress is stress and it’s not good for someone with multiple sclerosis.

But it’s all good. I got this. And more importantly, we have decided on a place for brunch in NYC…Vita Verde. It looks nice, reviews are more than decent, they can seat our entire table (15), there’s a roof top margarita bar, there are no accessibility issues (for me) and most importantly…… they have bottomless Mimosas and Bloody Marys - the Sangria looks good too.

Honorable Mentions which may also warrant a visit, just not for Sunday Funday brunch, include The Horny Ram and Peculier Pub. I would still like to go to Little Italy and to Magnolia Bakery and even a return trip to the Today show (I am NOT above using my disability to try and score a picture with Dylan Dryer - I just love her). Why is there never enough time to do everything in NYC?

Only 52 days until NYC Vaycay Departure - but who’s counting! I need to start putting together the daily itinerary (because I am my mother’s child) and start thinking about my budget (because I am also my father’s child).

OK - so I have church this morning followed by a little cooking (and by cooking, I mean throwing stuff in my crock pot). Maybe a little more Ray Donovan and a softball fundraising event this evening. I would like to go but it’s going to be very crowded - TBD.

Anyhoozle - what’s on your schedule today? I wish you and everyone around you a SPECTACULAR day. Do everything today with kindness in your heart. Choose to be nice and say nice things! And as always:

...wear a mask (when appropriate)

...be kind and compassionate to one another

...dance/sing/laugh it out. It might not help but it sure as hell couldn't hurt.

...and if you can’t say anything nice about anyone…come sit by me! (Clairee Belcher, Steel Magnolias, 1989).

Peace, Love and Blessings to you all. -AJ

#strengthpatiencepeacefaith

#hopelovejoygrace

#AndyStrong

https://www.youtube.com/watch?v=SHCBSZxwAag