Category Archives: Life with MS

Hello Again

Why Hello Again!

Did you ever notice that throughout the day you have a million thoughts, that you think, WOW! This would make a great blog! But you never actually write it. You never even make it to a computer. Sure sometimes you write the thought down. Hell I have an entire section in the notes on my phone of future blogs that I want to write. I even bought a book of ideas to write about.

Yet here I sit, with nothing written.

So lets start, again.

I’m going to start with me. Just in case you are new here. 🙂

There are the usual boring things. I have 2 crazy boys, I’ve been married forever, and I live in the cutest old town with all of it’s dirty little edges.

What is on my mind right now though, I am on my local BOE. It has been a huge struggle. It has given me stress and happiness. Honestly though, most of the time I feel like I am working by myself. I am banging my head against a wall. Why is it that people say they care about something, go out of their way to be part of something, and then NOTHING! Why?!?

This is actually why I stopped writing. This blog is tied to my real name. So I am forever afraid that someone will read this and somehow I will get in trouble for what I write. There are so many rules. For some reason there are more rules and guidelines for the members of a Board of Education than there are for your local government. Thankfully there is also significantly more training in New Jersey for a Board member. That should say something fellow Jersians. There is a reason our Government sucks but we have the best schools in the country.

I just want people to care. I just want people who say that they care to actually care.

Alright rant over. 🙂

I started this blog as a way to talk about, vent about, dealing with this ridiculous disease called Multiple Sclerosis. My invisible monster. I hit my 100th Tysabri infusion last month. It felt like somehow I was getting somewhere. Just like when I was on Copaxone. When I finished a box of shots I got all excited. It felt like, Yes! I have accomplished something! I must be done now. This has to be over. I have made it to the end! Then the next box of shots shows up at my door. DAMN IT! Same exact situation with my infusions. Just last week I went to my 101 infusion. And being the Disney nerd that I am, I was upset that there were no puppies. Puppies seemed like the most appropriate way to celebrate my 101 infusion. But, no puppies. And I still have to go to my 102, and my 103, and so on.

Many more things catch my attention, drive me nuts, and make me laugh than my life with MS. This is my place to share those things with you. I hope you enjoy the crazy place that is my brain.


Posted by on November 12, 2019 in Life with MS


Cognitive Issues 

Spinning to the Left!

Spinning to the Left!

Ok now that we know it’s definitely Vertigo…

So things have not been great. 😦

I haven’t been saying anything at my Neuro appointments or at my infusions when they ask me if anything is new. Cause technically it’s not new. Just worse. And I blame that on how I am living my life these days. I pretty much gave MS the middle finger and went back to living the way I want to. Busy most of the time. Always with plans. This is how I live. This is how I thrive. Unfortunately my MS disagrees with this attack on life. So I am full steam ahead for a week and then on the couch for a month. Uhg! At my last infusion I talked to some other MSers. 

I know. Hold the phone. Shocker! Janet talked to other people?!?!? I know.

But I found out that their are drugs for Fatigue. And of course I knew that there were drugs that helped you stay awake. Anyone who has ever pulled an all nighter for college or watched a movie knows this. But just for MS patients? I didn’t even think of this. So the research began. I looked up provigil. Seemed good. I looked up nuvigil. Seemed even better. Then I came across Ampyra. Seemed like it would solve the root of the problem. Not just the fatigue. 

So instead of calling, I just stopped by my Neuro’s office. That seems to have the best results. I got to talk to the “head nurse” who usually solves all of my problems. I really expected to leave with a prescription. 

But no….

She feels that my problem is not just my walking, she’s right, it’s more cognitive issues. Ampyra only solves walking problems. Which are minor for me. So she wants me to see my Neuro for more testing. So Friday I have an appointment with him. Supposably he will send me for cognitive testing. These should see just how bad my brain has gotten. 

I know that I have no new lesions. But before the Tysabri kicked in I developed lesions in the thought process section of my brain. And I forget stupid immediate things now. 


Not only can I forget my car/house keys/purse somewhere. But I will actually get into an argument with you about how I never had them in the first place!

And other stupid little things like that. 

Not to mention the inability to find the right word regularly.

Or loosing an entire day. 

Oh my god is it 10pm? What did we do today? You did what?!?!? Where was I? I was sleeping? I was sitting right there watching you? I have no memory of any of this. How is it Sunday night already? 

Yeah…..those are my weekends. 

I know that there are a lot of my fellow MS warriors out there that experience this same thing. You are reading this saying “Exactly.” 

But I’m freaking out!

I feel like I am loosing my mind.

So back to the Neuro I go. I just keep hoping that there is some way to make this better. Rearranging my life to fit this crap in is not something that I want to do. 😦

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Posted by on April 10, 2017 in Life with MS



Is Vertigo caused by a lesion on the brain? Or is this something that everyone with MS has to deal with for some other reason?Does it matter which way you feel like you are spinning? And to be fair, the world is spinning. Not me. 

Do the doctors ask this question to see if you are making it up? If you can’t tell them in which direction you are spinning then you must be lying. 

Or does it mean something if the world is spinning left, or right , or if you feel like you are rocking back and forth?

I have experienced all 3 of those. But at this very minute the world is spinning left like I’m in a tilt a whirl. 

Well it turns out that YES. Yes indeed Vertigo is caused by lesions. Specifically lesions in the complex pathways that coordinate visual, spatial and other input to the brain needed to produce and maintain equilibrium.

Good times people.

After doing some research on this it seems that it doesn’t matter which direction you are spinning, but that you are in fact spinning in a direction.

This site has a great explanation. They refer knowing you have Vertigo to being like knowing you are in love. There is no question. You can commit to it. 


I am definitely spinning left.

Because otherwise there could be different reasons why you feel dizzy that are not Vertigo. And you want to make sure that you are being treated for the correct ailment.

So there you have it people. Commit to a direction and take your motion sickness pills. 

*not me though. I’m going to sit here on the couch and pretend I just got off an awesome rollercoaster. Wweeeeeee!!!!!!!

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Posted by on January 24, 2017 in Life with MS


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Invisible symptoms 

With MS there are a lot of possible symptoms. Diagnosis is difficult because some of them are so impossible for people to see. Our invisible symptoms. One of these is commonly referred to as Brain Fog. 

Brain Fog is not just Fog. 

I feel like I am loosing my mind. The world is spinning around me at 100 miles an hour and I am standing still. Except I feel like i just ran around in circles and I can’t catch my breath. 

This is the world that I am living in right now. 

Forgetting things, like people’s names and the day of the week are becoming common place. Sometimes I forget where I am, how I got there, and am terrified to move ahead further. And I’m a block from home! 

On a bad day I am constantly fearful that I have forgotten something huge. Like my kids at school. Thank goodness I haven’t actually done this yet, but I fear it anyway. Feels like I shouldn’t be left alone sometimes. Unfortunately it is at those times that all I want is to be left alone. 

I read a book called “Moo!” once. Horrible book. In it the characters were putting on a play called “Stop the world. I want to get off.”. This is how I feel. I want to push a giant pause button. I want to curl up on my couch with a cup of coffee and stare at my Christmas Tree for an entire day! No responsibilities, no one expecting anything of me, no one judging me. I promise I’ll be better after that day! 

However, I don’t want to miss anything. I still want to throw these awesome events in town and at school. My kids and my town mean the world to me. And by “my kids” I don’t mean just the ones that I made. I mean the ones that call me Ms. Janet or Noah’s mom or Tyler’s mom. The ones that think I am just So Cool because I let them dress up like pirates at the book fair. The ones that I ran around in the woods with taking video of for a social studies project. I love these kids. 

So when people say to me, Janet you need to slow down, I ignore them. I know that they are right. But I feel a strong obligation to make sure that these kids have an amazing childhood with amazing memories. I want them to see magic in the world! 

Yes, I know I sound crazy. But these are my thoughts.

So please, Stop the World!

Just for a day. 

Just so I can catch my breath.

Just so that I can keep trying to create magic. 🙂

(This is my Brain Fog.)

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Posted by on December 3, 2016 in Life with MS


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A bunch of randomness

The brain is not functioning on all cylinders right now. However, I wanted to share out some quick randomness that is floating around up there. Hope you enjoy. 

Random thoughts
– I wish that my Fitbit was tapped into my MS. That way it would understand that just running errands today hit my limit. Like a “spoonbit”, someone needs to invent this! And when you hit your limit it shocks you so that you know to go take a nap!

– The left side of my body has decided to revolt. Bastard! It feels like I have a full arm weighted sleeve on and the same on my left leg from knee down. 

– Today started out as an absolute nightmare. I woke up at 3:30am with an insane migraine. I stumbled to the kitchen and took an imitrex, then went back to bed. At 7am I decided it was time to give up on that working. I woke my boys up in the usual fashion. I’m such a lucky mom. I give them big hugs, even my ginormous 14 year old and a kiss on the cheek. To which they wrap their arms around me and tell me they love me. Again, so lucky! I tell them if they can be ready in 20 minutes I’ll take them to D&Ds for breakfast. Then I threw jeans on and stumbled to the living room couch after taking 2 excedrin. The boys were ready in 10 minutes. Shocker. The promise of donuts will do that. So I grab a large plastic cup, just in case I don’t make it, and we head out. D&Ds is thankfully really close to my house and set up more like a cafe. So we get our breakfast and settle into some comfy leather chairs. Conversation is always entertaining with my boys. We are doing a relay for life tonight and I was trying to convince them to wear tutus. They refused. 😦 even after I told them I found some in camouflage green. Sad times. They also said I wasn’t allowed to get one for their father. They ruin all of my fun. 😉 Then when I was dropping my little one off at his school the principal was in the car line with a sign that said “Folwell’s future is Bright! Flash your lights for a Bright future!” To which of course we all did. So all of these things turned my crappy morning around really fast. I am so grateful for that. It is always the little things. 🙂


Posted by on October 14, 2016 in Life with MS


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Who needs sleep?

I remember a very brief time in college that I was very depressed. It was horrible and lonely and there was absolutely no excuse for it. I have always had a wonderful, charmed life. Yet there it was. Favorably is not exactly how I looked back at that time. I have a tendency to joke about it. I was at my thinnest back then. Who doesn’t want that? I wasn’t eating & I went for 7 mile walks every day. Healthy, I know. The walks were my happy place. On the boardwalk in LongBranch. The beach can do wonderful things to ones psyche. And when you have sleep ready to enfold you in it’s velvetty darkness, who needs food?

These days, however, it’s a different story. I am finding myself looking back at that time with a tinge of jealousy. That was when I had the best sleep of my life. 

I could sleep at any time of day. I never had a problem sleeping through the night. I could have easily slept through an entire day. Hell, I could have slept through an entire week! 

Then, there is now.

Now I can’t sleep through the night 2 nights in a row. I’m lucky when I get a full night of sleep multiple nights a week. When I do finally get a great night of sleep, I wake up knowing that I will pay for it the next night. 

Maybe I used up all my sleeping back in college. 

I read on the numerous MS feeds that I follow that lack of sleep is common with us MS warriors. Why is that? We are tired most of the time. You would think that at night we would sleep! But no. I go to bed early because I’m tired and then I wake up in the middle of the night. Wide awake. Writing a blog. I just don’t see the correlation to the holes in my brain. We work harder all day, every day, to do things that healthy people take for granted. Like showering. 😦 This should make us more tired. And it does! I could take a healthy 20 minute nap after I shower. Every. Time. Of course, no one has time for that. So why doesn’t our body just store up that fatigue so that we can use it at night? Instead we have to take naps during the day, just to make it through. We should be able to skip the nap and sleep through the night. I am sad to tell you though, this is not how it works.

A little while ago, when I was having really bad toe cramps, I understood the non sleeping. You can’t sleep when you are in pain. I get that. A lot of us go through having chronic pain, or just inappropriate outbursts of it at inappropriate times. Like when we should be sleeping. That makes sense to me. However, right now I have no pain. Just irritation. 

I would hate to have to add yet another pill to the pile. I believe that it is now time to go back to the research. How can I (Don’t shoot me for saying this. I’m already cringing internally.) naturally & holistically find a way to get better sleep? 

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Posted by on September 20, 2016 in Life with MS


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If the shoe fits.

I need someone to follow me around and say no for me when I get crazy notions to just keep pushing. But at the same time I need someone with me to say “Janet, get off the couch!” When I have become so lazy that I start feeling crappy just because I haven’t moved in a long time. Why do I have no happy medium. I’m either on, or nonexistent. 

I’m like this in absolutely every aspect of my life. My biggest flaw right now is that I do this with people. If I decide that we are friends, I trust you completely. I will tell you absolutely everything about myself. I will go out of my way to always stick up for you even when I disagree with you. Because now you are one of my people. 

The hard learned reality however is that this is not a 2 way street. Sometimes it is. And then that is glorious! But most of the time not. 

So I have decided that….for a little while…..I will be an observer of my life. Sounds strange, I know.

I need to focus on my health. Stop letting other people’s drama affect me. A good friend has a saying “Not my monkeys, not my circus.” I need to remember this.

I had my 6 month Neuro appointment last week. Between constantly telling me how lucky I am he told me that my brain was retraining itself. It is learning to go around the frayed nerve fibers. This is why my hand is getting so weak. Why my left 3 fingers are almost useless now. The OT said that I should use a resistance ball for an hour on each hand every day. I looked up some exercises that I need to start doing with my hand too. Screw you brain! I’m going to prolong the abandonment of my hand for as long as possible. Also between “you are very lucky”‘s he told me that it will get worse over time. But, I’m not getting new lesions. He’s not wrong. I had a momentary wallowing in self pity though. 

Fine, loose my left hand. But my left foot? Ok and both? I won’t be able to move myself around in a wheel chair. I’d need a scooter. And a new freaking house! 😦 but I came up with a solution. If I could put a brace on my left foot that kept it straight then I could use a cane with my right hand. I’ve got this! Wallowing over.

Observing life. 

Trying to figure people out. 

I have always liked the fact that my immediate reaction to people is notice what’s good about them. But I need to stop ignoring their flaws. Sometimes the red flags are there and blinking and waving, yet I still ignore. I figure they will go away. At the root of it I know this is a great person, they will get over this faze. 

 “No!” They won’t. And even if they do first they are going to take you down there destructive little path. 



Do hand exercises.

Love your family!

Do what you know is right.


Avoid other people’s monkeys.

Learn to have a happy medium!

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Posted by on July 5, 2016 in Life with MS


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