I am overcoming my inability to type with my ability to talk (and talk and talk and talk) I'll be posting a video every week on my YouTube channel. I'll be posting those videos here too along with an occasional regular blog in the mix. (As long as my hands are up to doing the extra typing.)
You'll be able to watch the videos here, but I encourage you to stop by my channel at YouTube once I'm up and running to follow me and get my numbers started!
Sometimes things that you don't have but are necessary can pile up on your shoulders so bad that it drives you into depression. I'm not talking about feeling down, I'm talking about real life depression. Been there, been diagnosed with that, recovered and never want to do it again. But here I am.
I need a home health aide, someone who can help keep me cleaned but also help with getting the things I use organized and get me ready to do my Vlog every week. Aides are in very short supply and very difficult to find unless you have tons of money right now. Agencies, who don't pay aides well at all, are charging even more because they can't find employees. Some independent contractor aides are asking for an hourly rate that is less than the agencies asked for and more of what they're worth and in the price range I can afford but some are asking as much or more than the agencies asked for and none of them want to pay taxes on the income. But I have to have an aide for me to be able to do pretty much anything.
I need to take a leave of absence maybe as little as three weeks could be as much as a couple months, but I do want to come back.
TV shows get to take a week or weeks off and show you whatever reruns they want you to see. They have a whole staff and crew working on their shows and my YouTube show is just me with a little bit of help now in then. So I'm taking a week off and YOU get to pick what rerun to watch or just enjoy a couple minutes of my photography and I'll see you next week!
Being organized and in control of my own brain is something that's always been the driving force in everything I do. MS has not taken that away from me. In some ways it's made it more difficult to physically keep up with what my brain expects of me, but it hasn't taken that drive away.
However, I have always had the tendency to take on more than I actually have time for. That's always gotten me a little mentally cluttered but I've always had ways to unclutter myself. Stupid MS, seems to get me cluttered with less, but the drive to do more than I have time for is still alive and well. Regrouping has always meant uncluttering my physical space. The space is smaller now, but uncluttering it has the same mental regrouping effect
We start off with a little bit baseball! Actually, a whole bunch of baseball. Then I wheel onto my accessible soapbox to talk about Covid, changes in vaccination for immunocompromised and questions that can't be answered about the selfish people who are afraid to be vaccinated and are possibly helping the pandemic get worse.
This is a collection of clips from the cutting room folder. It's funny or informative bits that just didn't fit in their original vlogs. There's also a "halftime show" with some short cat bits. Because cats seem to rule YouTube. LOL
PSA "Prince,” The Humane Society of The United States, Maddie’s Fund & The Ad Council, 2016.
I've been lucky as far as getting matched up with good doctors. I have a tendency to really research them before I see them, EXCEPT when I was being shoved from doctor to doctor and specialist to specialist because everybody knew there was something wrong with me but they didn't know what it was yet. One doctor that everyone said was very good but a jerk, ended up being incredibly honest and respectful with me and one department that was supposed to be totally dependable screwed up big-time on a set of my second of three MRIs in five months.
The neurologist who diagnosed me with MS was fantastic and he just recently retired. I struck even greater gold being able to take a look at the other two neurologists the CPA I really like works with and I found a neurologist that is absolutely fits the type of MS I have even better. (Now I just hope he doesn't retire for quite a while! LOL)
But I've also ended up with doctors and specialists that have sent me looking for doctors and specialist who I work with better. There are all kinds of qualified people and all kinds of people in need. A mutual line of communication and respect is necessary for it to work on both ends. It hurts so bad when I talk to other people from other MS patients, to other chronically ill patients, to people just going in for a yearly physical, who come back saying they don't feel respected and they don't understand half of what their doctor tells them. But they keep on going back because they don't think about the fact that they just don't have to. If there are better choices - make them! When it comes right down to it it's just their paycheck. It's your LIFE.
I was still tired and you can hear it in my raspy voice, but the vlog must go on!
After celebrating my birthday with things planned for three days in a row, it took me another 3 1/2 days to start to recover and get my normal energy back. It was totally worth it, but it's a lot easier to do if you know what your energy limit is and make an effort not to overdo it too much. In my life before multiple sclerosis, I tended to overdo it anyway. But it takes me longer to recover now. There was a time when I worked 2 80-hour weeks in a row producing a hockey game for a charity I really believed in. My boss told me she didn't want to see me for three days after the production was done. Now, I carefully schedule how long it takes me to complete a simple vlog once a week and that requires a few hours of rest in between and after. My energy limits changing is probably one of the hardest things multiple sclerosis has made me adjust to.
But you can do you things that are fulfilling and things that are fun even if you are living with a chronic illness or are always in a wheelchair. You just have to learn to adjust what your limits are and go ahead and push them! Just PLAN your time for recovery, so you can push those limits again.
It's not just a story I'm out though streamliner festival at Spencer North Carolina in 2014, what it is, is the connection of that festival to a fantastic family day riding behind the Norfolk & Western 611 steam engine in 1992. I have fantastic memories of both - one was a trip where I climbed up into the cab of the locomotive and one was being able to travel on the museums train trip in my wheelchair.
Two very special memories forever connected by one very special locomotive.
I'm so sorry that this is a late for the Premier on YouTube if you enjoy watching the premiere. But the great thing about the Internet is once it's there it stays! The cyber coffee shop is open 24/7/365 (366 every four years.)
The past couple weeks have been rough MS weeks so my hands have been working worse than usual and I'm having problems finding a home health aide, which is someone I desperately need a few days a week. If you have a moment to send a prayer or good thoughts that this problem gets solved as soon as possible, I'd really appreciate that! (It's looking like it may be ruining my birthday next week, which makes me very sad.)
This weeks vlog, Overnighters 2 continues where Overnighters 1 left off. Seriously, it's where The Editor decided to cut Overnighters and make it a two-part vlog.
In Overnighters 2, I talk about some of the places that I've been with my wheelchair & the update to the ADA in 2010, including information I collected and changes a favorite local business made without me naming any names to Washington. The 2010 update also helps with how to get places for your overnight trip and some of my thoughts about where to stay on your overnighter.
Sometimes you lose control and lose track of things that are going on. This is actually not a sad vlog, it's just a repeat vlog. Instead of finishing up “Overnighters 2,” I ended up with the offer of going on a couple of them & running out of time for editing. So this is a replay f “Heat" and ways to beat the heat outside. That's something that I’m really going to need since I'm going to be out for a few days in the summer!
“Overnighters 2,” will premiere NEXT week while I enjoy a couple of those overnighters myself.
'm in a wheelchair and I can't stand up at all I need assistance to move around my own home and I can't even dress myself without a lot of help and then be put in the wheelchair to leave the house. That doesn't mean I'm "homebound.”
Even in the wheelchair as long as you have someone who can help you a little bit and travel with you for an overnighter you can get away from the house and enjoy lots of things the dark too far away from where you are but far enough that they are traveling!
This two-part vlog let you know about things that you can do near you and things that you can do for free because you're in a wheelchair. It's not necessarily always a bad thing do you have that piece of electric or self propelling metal underneath you.
It's been almost a year since I started the vlog! It's been a wonderful year of learning so many new things. My mother always said that “the day that you stop learning is the day you start dying.” Along with the length of my to do list, I figure I'm good for another 150 years. Maybe by then they'll have cured MS I've gotten my lower back surgery and gone through therapy. I'll be walking up Sand dunes again and I'll actually get to try skydiving. Having a plan in mind is important so are healthy fantasies.
So these are things that I've learned about YouTube, communication, feedback and wonderful things about life in general. Like so many things when you make public a project that you do to help yourself you end up helping your self in ways you didn't know you would while you're also extending help to other people.
Sometimes remaining optimistic is a challenge. Things can happen that can't be controlled and it can seem like the world is working against you. But one thing definitely is true. When things happen that are out of your control, it's not your fault and you don't how to apologize for them. But “I’m sorry” is something that we all say and it's often said about things we don't need to be sorry about.
I'm so far behind on everything. I really want to catch up, to get everything on my list of priorities done so that my time is mine again. I do realize there are just some things I should probably just say no to doing.
I've taken over making sure all of the household bills, including my medical bills, I get paid. Since I started doing that we haven't had one late payment and they do it all digital so we don't kill trees getting paper bills or just clutter David's table and never get paid. I know it's like a 1950s housewife horror movie but I called my life. But considering that when Social Security time comes around my degree and years of working will mean nothing and my Social Security checks will be based on the fact that I was a wife. It's humiliating, but I'm going to be the best darn simple wife that I can handle with MS.
But the biggest and most important priority if my world is my vlog. It makes me feel like I'm working again. That's a pretty big deal to a recovering workaholic. And that makes me feel like I'm doing something worthwhile. Like when I was a self-help group leader, I can try to help people with chronic illnesses be more positive. I also hope it helps caregivers and loved ones of people with chronic illnesses, like me, I understand better what their loved one is dealing with and to keep those friendships and relationships as close as they've always been.
I'm sorry I didn't put a note up here. There was no video last week (I put it on Facebook and Twitter, but if you don't follow me on those media, it kind a lefty wondering and I'm sorry.) I was moving some things so I could stretch a little bit because my legs were sore spending a whole day trying to edit in a hurry video that was supposed to go up last week. My husband left on a weeks vacation and I had just lost the agency that was applying an aide 9 hours a week, which is better than nothing. But now I did have nothing going in to seven days with no one coming in. To say that I was overwhelmed is a major understatement!
So, while I was trying to get last weeks blog done and I've managed to really get "in the zone" of that I forgot about stretching my legs at all. When I was moving things the most dropped to the floor and I had to wait until my husband got home to retrieve it. The only problem was it was broken. I can't edit or even do anything in Photoshop without my mouse. That's the skipped week. I got on Amazon and ordered TWO mice so there would always be a back up. The first mouse that I got mail was a gift for my friend and former coworker, Mary. The message was "enjoy your gift. Now get back to editing!" She knows you're a workaholic friend too well. LOL
Today's YouTube video it's about that week but I was so afraid of and how it turned out to be a very good week after all.
No matter what your chronic illness is a self-help group is an excellent opportunity to be with people that deal with the same things that you do. And let you know that you are not alone.
I was a certified self-help group leader with the national MS Society for about a year and a half and it was a wonderful experience. I met so many other people with multiple sclerosis and so many different types of MS. It gave me a greater understanding of what I'm living with but it also gave me a better understanding that I'm not the only one living with it. I discovered that a healthy combination of optimism and realism is key to making the most of existing with a chronic illness.
This vlog talks about multiple sclerosis self-help groups, that will resume being person to person meetings eventually as we move towards a post-Covid world, because that's my personal disease and my personal experience. But I'm sure a web search will reveal many peer groups for various chronic illnesses as well as local person-to-person support groups.
I've been looking forward to finishing and posting this one for a while!
There is a difference between assistance animals and therapy pets. This week we're talking about emotional support pets, therapy pets. If you have a chronic illness, or if you're recovering from an illness or injury, your pets can be the comfort you need to recover or make it another day. Even if you're not dealing with an illness or something you're recovering from, if it's just been a bad day or a frustrating day, if you're just sad about something that's happened, your pets, furry, feathered, scaled or swimming, can calm you and make everything okay. Pets give love unconditionally and all they really want is to make you feel good.
Whew! I almost didn't get the vlog done this week! It's been a very, very busy week. Some of it is explained in the vlog, but the aide that I had left the agency abruptly. They didn't have anybody to replace her so they waived the usual two week notice to leave since there was nobody that wasn't getting paid if I left because they had nobody to assign to me.
So with David planning on his vacation during the first week of June, I had to find a new agency very fast! I basically said “sign me up” to the first agency that called back. It's been an exhausting week with new people in every day at the beginning of the week and having to go through the whole speech of “this is here, that is there, this is how you put me in a sling, this is how you wash my back…” over and over and over three days straight. One of the symptoms of multiple sclerosis, no matter which kind you have is fatigue. The first three days of this week with four hour shifts with new aides every day has been exhausting. Add to that it's Cottonwood season! Cottonwood is the nastiest of my spring allergies. So I have exhausting new aides, medicine I take for my allergies in pain meds, which I have had to take because being that tired makes pretty much all of my symptoms a little worse. Thursday morning arrived and I haven't recorded anything for the vlog. I hadn't even really had time to write my bullet points that are my cheat sheet for when I'm doing the video recording. I didn't even know what I'd be talking about until this morning. So please watch the video and let me know what you think of my improv!
Now that I've had my Covid vaccine and I got my OK from the doctor to leave the house May 5, 2021 my husband and I went to Fort Wayne Indiana to see the Michigan Whitcaps at Fort Wayne Tin Caps. After the awful year 2020 was, and remember I also boycotted baseball because I was angry with how they did the 2020 season, but I can't stay mad at baseball. I'm a lifer when it comes to being a baseball fan. So my first day out for other than a Covid shot in over a year being a road trip to go to a baseball game was the most awesome date day with my husband that I could think of. It was a great day!
Oh and I am choosing a microphone so that when I am out loud events you can hear me more than the background. I think I did okay but next time when I'm out it's gonna be even better.
A Chronic Illness SHOULD Make You Immune To Common Stuff
If you have a chronic illness like the MS I have, Parkinson's that including some very well-known entertainers have, diabetes that my second adopted big brother had since he was two years old, lupus tormented an old friend of mine, and the thousands of people I've read about with fibromyalgia. I did that book report about Judith Heuman’s book Being Heuman, living life in a wheelchair WAY before the ADA because of polio.
We are SPECIAL. Because we get these wonderful chronic illnesses we should automatically be immune from everything common. The common cold, a common flu, and seasonal allergies should be things that we no longer have to worry about because we’re special.
I wish that were true. Because today's relatively brief, for me, Vlog is all about how spring allergies have kicked me in the butt… because multiple sclerosis is not enough.
Sorry I'm late with the link for the video this week. My priority list includes putting some blogs up that aren't just links to YouTube. But like I said before I'm probably the most overworking I'm a disabled person out there! I'm going to get everything together and get my priority list taken care of. (I promised my therapist that I would do that) but these things take time. Unfortunately getting slammed by seasonal allergies makes them take more time. So I will give the readers of The Chronicles of Nani blog that hint on next week's video. It's taping day and I'm about to talk about seasonal allergies and fun stuff like that.
But in case you didn't link to it from Facebook or another social media link here is this weeks vlog:
Prior to diagnosis, MS made me pro at falling. Of course at the time I had no idea what was making me such a klutz. In fact there was one time that I was out to dinner with a friend and as we were leaving I stopped to hold a door for a couple of people coming in. I jogged up to catch up with them and I get an uneven spot in the sidewalk and when he tried to grab me I ended up falling flat on my face and lost my two front teeth. (THAT story is not in the Vlog because I just remembered it!)
See my large bruises on BOTH sides of my face in the course of just over a year and how I manage to even fall now that I don't walk. But I've learned how to do it more gracefully and less prone to bruising.
I've definitely learned that MS is not for easily embarrassed or the beauty obsessed!
And so the story continues… OK, so my brother is expecting twins and they found out a week after I got my new car. So once again the 1994 family glory returned to him. It took me 16 years (yeah I say 15 in the video, but the correct number of years was 16 because our "teen sitting" trip was March 2011) but I did get even for stealing the thunder of my new car. LOL
I adored those twins from the moment they were born and we’ve done so many things together their whole lives, but that weekend in 2011 was just awesome on many levels!
Sometimes life is not always about living with my chronic illness. It's not always about bad days and it's not even always about making the best of good days. Sometimes it's just me as a human being.
Early on in doing my vlog, one of my aides suggested that every now and then I should just tell a story. She said she loved hearing me tell stories because it's some thing that I did well. I was very flattered as I was flattered what is my grandmother told me when I told stories like my grandfather did when I went to visit her just a few months after he died. My grandfather was the greatest storyteller I've ever known and my grandma told me I inherited his gift. So this is part one of my first story time. I thought I should give a little bit of a background before I tell the first story.
You hear a little bit about the sibling rivalry story this week but the rest of it will come next week in part 2.
What you eat can make or break you. I found that to be incredibly true with MS! Thanking I was being nice, I made stupid mistakes in my diet when I could no longer walk and couldn't cook for myself. And MS and eating video at Cleveland Clinic made me think differently and move me in the direction of the way are used to eat. Sometimes you don't realize how bad you feel until you make changes that make you feel a whole heck of a lot better!
A friend looking for a Mediterranean salad ideas for me to try out brought me to a website full of fantastic very MS friendly ideas. Within a week of making that diet change I realized how bad I didn't feeling without even knowing it!
Join me on YouTube today at 8am to chat with me during the premier!
Or Watch anytime my cyber coffee shop is open 24/7!
David and I got our first Pfizer vaccine shots on St. Patrick's Day! (The older of the two teddy bears in our front window is now wearing a green Band-Aid to let everyone know he got his first shot too.) I made it a whole year o never getting outside of the house except for some fresh air without going insane. But even if it was just to get a shot, it was great to be in a large group of people again.
Don't worry if you don't speak French! There's only a little bit of French at the beginning of the vlog and there are subtitles in English. I just wanted to show off that I still actually remember some of my high school French. (I took French 101 and 102 in college because I needed some "easy" elective credits.) I only had to look up one word in the intro that I speak in French.
But this video is about COFFEE! It talks about my personal coffee history, what coffee actually means to me, my favorite coffee and the ridiculous tendency to judge people by their choice of coffee.
So, stir up your favorite cyber coffee shop beverage and enjoy!
(BTW, demitasse means "small cup." I do realize that every time I say "demitasse cup" I am being redundant.)
This weeks video really is just what it says a rant. It's not the happy smiling me you're used to seeing or reading. (You'll see then again next week) but for this week it's me breaking down and putting it on video.
The good news is, much like when I do an art journal I am upset, once I finished editing this it was like a weight lifted off my shoulders and I was at peace. No more tears for the last four days!
OK I'm behind on things right now! I'm finding some nasty allergies. March just sort of slipped into my world before I realized I'm starting to feel the crap that I'm feeling because we're headed into allergy season. I have a to do list that I set for myself. Not only did I have everything ready but forgot to post this one but on my to do list it also includes that it's not just the video blogs but I want to make a point of posting a regular well once a week or two. I'm currently kind of slipping up on both, but I'm also realizing that and fixing things up!
Please forgive me because it's Thursday and there will be a new vlog tomorrow, but if you didn't see last weeks yet here's the vlog that debuted last Friday.
Things didn't go as planned and this week's vlog ended up being done on a day that started with tears and almost no will to record. Instead it was plans changed and this is why the day started with tears. I think it turned out pretty good.
The Chronicles of Nani - MouSeThis weeks video starts with a great daddy /daughter day that Pop and I shared. Then it goes on to tell you how I describe MS in simple non-medical terms!
2021 started for everybody else a little over a month ago. I sort of took a hiatus from life until just now. My vlog life started today and I'll probably write some actual blog stuff this weekend. But my real video world starts next Friday, although you can see my preview for that right now.
