Tag Archives: MS


Ahhhh the life of an MSer. 

I freaked my husband out recently. Tears and all. I feel bad about it. Sometimes I feel like I’m loosing it though. Like I literally have no grasp on reality anymore. Of course that’s not why I freaked out. My left foot has been getting worse. I now have to think about picking my foot up when I walk. Curbs and stairs hate me! I haven’t fallen. But every time I walk up or down stairs I picture myself falling and exactly how I would hit the ground and exactly who is around and how embarrassing that would be. But in my attempt to stay healthy and active I am still taking the stairs instead of elevators. This may just be part of my stubborn streak. If something/one tells me I can’t do something then that’s all I want to do. Even if it’s my own body. Even if it’s just stairs. 

I also am very thankful that I am right handed. My left hand no longer has the ability to hold things except in a grasping fist type fashion. Something like a pen or pencil would be out of the question. Coffee mugs by the handle are out of the question. The weakness in my left three fingers is constant now. 

This is why I freaked out. I am aware that MS is a degenerative disease. I thought that because I’m young the lesions that I already had would heal. Or at least not get worse. Now that I’m on Tysabri and my damn immune system can’t get into my brain or spine I thought great, I’ll be ok. I know I’m being naive. Isn’t this how we all want to think though? Now I wonder, is it going to get worse? 

My husbands advice is to get back to being more active. He’s not wrong. I kinda crashed after last month. I really pushed too much. The recovery took significantly longer than I thought that it would. 

Let’s think about that for a second. What was too much for me? I ran 2 book fairs at different schools back to back with a few overlapping days. During this time I also had meetings and events for Board of Ed. Now that’s not any more than a normal person with a job has to do on a regular basis. However it took me a month to recover from it. 

That is what I hate most about this. Take my leg and hand. Give me back the ability to have my crazy full life. I love my crazy full life! 

So back to it. The month is over. Back to running. I miss it. Maybe it will help. You know what they say about bodies in motion. 😉


Posted by on April 12, 2016 in Life with MS


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C25K week 2

I just finished week two day one!

On infusion day!

I’m not going to lie though. I did almost cry half way through. And on the last stretch of running I could no longer flex my left foot. So yeah for thigh muscles.

Week two is a five minute warm up walk, followed by alternating 90 seconds of running and two minutes of walking for twenty minutes, ending with a five minute walking cool down.

I made it the whole way. Yes I’m a day behind and that means that I am going to have to run again tomorrow. The day after my infusion. The worst day of the month for me. But yet again I am arming myself with help. My mother runs with me on Wednesdays. I’ve got this.

Starting this new endeavor has already shown me that I can do more than I ever thought that I could. Sure I’m still at the beginning. But I haven’t given up. I’m still pressing through despite the MS. My future is feeling very positive right now.

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Posted by on January 12, 2016 in Life with MS


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New Funness

Last night I made a discovery.

It was Wednesday. The craziest day of the week for me. And the kids actually. I now get “I didn’t have any time to play today” from Tyler every Wednesday. It’s only partially my fault that their schedules are crazy that day. And no it’s not sports. Everyone always assumes that if a mom is running around with their kids it must be sports. It’s not. It’s Holiday Play practice and CCD (religious ed.) for 2 kids at 2 separate times. I also squeeze in homework and dinner. It’s fun.

But … Not the point. The point is that I finally got to sit down (not in my car). This is when I noticed that something was different.

I had changed into my PJs, grabbed my coffee, and sat down to watch S.H.I.E.L.D. I felt something on the back of my left leg. Somewhere between ankle and calf level. In hind site I can’t remember what I felt. Was it an itch? I don’t know. But when I pulled my legs up on the couch and ran my hand down my left calf that’s when I noticed it. A hole. Or indentation if you will. It was like I had been resting my leg on a bar and the bar left the indentation. Except there was no bar. I hadn’t been resting my leg on anything. Hell, I hadn’t been resting any part of me at all.

I tried to ignore it and watch the show. Which was pretty good. I didn’t realize that Rich, sitting next to me on the couch, was searching on the internet for the possible cause of the hole. He came up with ” I must have injured my Achilles Tendon.”. I was unsure of this answer. I had absolutely no pain. I don’t remember doing anything that could have possibly injured it. And I had no loss of strength or movement. So then I did a little searching. A lot of people have this happen to their thigh muscle. And that seemed to have reasonable explanations. But when it came to anything below the knee there was much less information. A lot of sights started talking about Edemas, which this is not. Or blood clots, which this is not. Otherwise they said that it could be in issue with your diabetes. They then said, begrudgingly it seemed, if you are not diabetic, which I am not, and it is not one of the above mentioned situations, then…. you may have MS.


I had no idea. Maybe I should check with a doctor. SMH!!!!

So I gave up and went to bed. I still wasn’t convinced that this was MS related. My brain is protected after all. Isn’t it?

Well now it’s morning. The area around said indentation is numb. Like a hand sized circle at the bottom of my left leg. Numb like my face was 3 years ago when I was on Copaxone (which wasn’t working). I noticed this in the shower. When water ran down my leg it felt like there was something covering that piece if my leg. Like if you felt water on your hand while wearing a glove. And now I’m thinking about it too much, so there is a constant fuzzy circle there now.

There is no impairment to my walking or anything. This is the same leg that has my other issues. The thumper situation, where my foot will bounce for no apparent reason, and the flipper crap, where I have a hard time flexing my foot when I’m tired. That last one does make walking more entertaining. So I guess a hole and now numbness is just par for the course.

I think that at this point it would be pretty hard to blame it on a non MS situation. But I welcome all thoughts. 🙂 because I am pretty sure that it would take another MRI for the hubby to believe that it is MS related. This feels like an Akum’s Razor type of situation.

Please share any knowledge that you might have about this.


Posted by on October 10, 2013 in Life with MS


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Random thoughts of a scattered mind

So I have been appointed chairperson of PTA Membership. It’s official. I’m a mom. A PTA mom. All I need now is a soccer mom van and I’m good to go. I never saw myself as this person. But…. I’m embracing it as much as my psyche will allow. So I am kicking a little bit of ass! : ) Anyway, my gripe this morning is this; who staples money to paper?!? My son’s principal. That’s who. WoW! I’m just going to go with “it was his secretary.”. It helps me keep my confidence in the school.

I watched “Becoming Jane”. Yesterday. Twice actually. Once while the kids were in school and once when I was waiting for Rich to come home from a planning board meeting so that we could watch “the dome”. All of that was useless knowledge. Sorry.
How have I missed this movie? It was fantastic. I love the mental voice of Jane Austen and was so impressed with Kevin Hood and Sara Williams for keeping it so true to form. I would love to actually read the letters that Jane wrote that inspired this movie. I’m still all mentally wrapped up in Jane’s loss. I wrote more to the ending in my head.
Tom’s wife is dead. I don’t know/care why. And Jane never got married. So now the two of them can finally be together. I like when they leave it open for our own interpretation of what could happen. Like “Castaway”. Good Stuff.

But now that my mind is back in that movie I can’t remember my other random thoughts. So quick note about me. I know that you are on the edge of your seat. : )

I’m back in the chair. Headaches have been a disaster this season. And my favorite nurse isn’t here today. So the needle is back in the hand. I don’t know why that annoys my so much.

I went to a fundraiser this past weekend. It was a lot of fun. They had a Chinese auction and my table won a ridiculous amount of prizes. But what was very interesting for me was what I learned. The fundraiser was for Scleroderma. My friends mother died from this last year. And it happened very fast. I had no idea what this was. I just assumed that it was some form of cancer. Shows how ignorant I can be. It’s actually an auto-immune disease. Much like MS. So it really kinda hit home for me. I am so glad that they have so many friends and family to surround them with support.

Alright I’m done rambling. Hopefully I’ll write again before I’m back here in my big comfy chair. But really people, is there any better time to blog?

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Posted by on September 17, 2013 in the little things


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Oh no! I hope I didn’t loose you by saying that awful word. Sometimes it sounds worse than cursing.

I’m not sure why we make that word feel so heavy. Like it is attached to everything that we hate to do.

So I am going to say that I just moved more. Significantly more.

But I am not going to chew your ear off about the awesome activities that I have been doing. : )
Instead I thought that I would share the benefits of it.

I stopped taking my Celexa! Yeah! I know that you are supposed to ween yourself off and what not. In my defense though it started as an accident. I left my meds at mom’s. 4 days later I’m back at my mom’s meds in hand. Then I stop.

“Why am I taking this?”

I know why I used to take it. But I feel great. The only reason that I started taking it was because my Neuro said that it would help with the fatigue so I would have more energy. Well last year proved that that wasn’t true. Then I kept taking it because I know first hand that when you stop cold turkey you turn into a royal bitch. Well I did. Then I started having anxiety. So I was actually asked if I would like to up my dose of Celexa. I said No. Emphatically No!

Then last week I really started moving a lot more. It was definitely forced on me. Right now I am on kind of a stay-cation.
(I actually hate that term. There is no such thing as a vacation where you don’t change your surroundings. You are all fooling yourselves. But I did change my surroundings. I’m at my parent’s house. So maybe I can consider it a real vacation?)

Well my mom is like the energizer bunny. Never stops moving. And while she understands if I am too tired to do something she will definitely push me to try.

Since right now I am sitting at the hospital waiting to be hooked up last week was not what I would have considered a great week to start moving more. But move more I did.

It started begrudgingly. But after my first act of moving (kayaking to be specific) I felt amazing. I got to my mom’s on Monday morning dragged the kids to swimming lessons ( where they did great by the way) and I felt like crap. I of course did not share this news. Then my mom informed we that we were taking the little ones kayaking. I was not thrilled. Be she seemed so adamant about going and so excited to take the little ones, who have never been, that I couldn’t talk her out of it.

Well I have to tell you that when I got back (we had a blast by the way. My little bear is awesome!) I felt great! I felt like I had energy and I was in a good mood. Like a complete 180 from that morning.

I took that experience and repeated it every day. Not the kayaking, but other things. And had the same result every time. It’s like the new super drug! Who new! And it is unfailing. So far it has worked every time!

So this is my advice;
If you feel like crap, for whatever reason, go do something. I don’t mean in your house. Go out. Take a walk, go to the park. Anything. Just get moving. All though I do think that a big part of it is being outside. Not positive about that, but an exercise (not that word again!) tape at home just doesn’t sound the same.


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Not ready for round 2 yet.

I refuse to admit that I have been doing too much!
I love being busy. Every day that I don’t have something to do is like torture.
That being said, the brain is starting to revolt. It’s just the normal fatigue/dizziness/left arm and leg weakness. But I think that I have to take today off. So as much as I miss my friend John and love his fireworks and the party that he throws every year I am sitting this one out. : (
Last night was wonderful! My husband ran the fireworks display in my town. He did a very good job. The town hasn’t had fireworks in many years. So being able to bring it back was a lot of fun and I think that everyone really enjoyed it.
Tomorrow is yet another party at the in-laws. I have every intention of drinking wine and floating in the pool all day! I can’t see how my brain could have a problem with that.
I hope everyone is keeping cool out there and enjoying there weekend!

Oh and can’t forget the big Wimbledon Men’s Final tomorrow. I don’t know who I want to win more! I love Djokovic more definitely, but Murray is a Brit. He so deserves to win at The All England Club that half of me wants to see it happen. The other half of me wants to see Djokovic bury everyone he plays. So I guess it will be a good match either way. Everyone keep your TVs tuned to ESPN2!

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Posted by on July 6, 2013 in Life with MS


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Day ? I don’t know I have already lost count!

I’m still going strong baby! Really excited about that!

Let’s see where did I leave you? Ah who cares right? No one wants to hear a day by day of my summer.

I did go to the Crayola Factory with my kids…. And my sister’s kids….. and my aunt and 87 year old grandmother….. and my 12 year old cousin. But that’s not what made it a crazy day. It was a rainy day so every kid for miles around was there. It was a ridiculous mad house. I am so very, very thankful that my eyes are all better. My advice to the world at large is that if you are having eye problems, like say an upbeat nystagmus (or probably any direction) or Optic Neuritis, avoid the Crayola Factory like the plague! All 4 floors are a riot of bright colors (shocker). And the amount of people, there is no break. Not even on the benches against the wall that you have to fight to sit on. I will admit to having a couple of verbal confrontations with other moms, and grandmoms. Since a 90+ year old hag cut my son in line after we were waiting a half hour. You know I can deal with the routy kids. The obnoxious parents are another thing all together.

“You know what Lady, we have all been waiting in line a long time. When did God come down and say that it was time for you to jump in front of us all and go first?”

Yeah I don’t handle other parents well at all.

For those of you without any eye problems and are capable of being civil, I whole heartedly recommend the Crayola Factory. I actually think it’s called The Crayola Experience. It was very cool. There was a chance for the kids to be creative on every floor. We made our own crayons and markers and a whole bunch of little art pieces. We had a blast. Also the town that it is in Easton, PA is really neat. Book stores (of course that’s the first thing that I noticed) right next to coffee shops. Not Starbucks mind you, but honest to god coffee shops. Love it! And then for those of you that that is not enough for, there are museums and such. I wish that we had more time to spend there than just an afternoon. Maybe another time.

Last night’s fireworks were canceled due to rain. Made me very sad. It was the fireworks show at the vineyard. They were so cool last year. Tonight is the 4th of July Party at a family friends. We are very excited. Everyone except Tyler who would be happy sitting on his computer all day. : ( We will force the fun on him. He really has no choice.

On the MS front I am doing fantastic. I got my blood results back. No JC Virus antibodies. No Tysabri antibodies. So all is full steam ahead for my meds. I have been seriously thinking about adding another doc to my repertoire. I don’t love my Neuro. I love that he knows what he is talking about and that he has the Tysabri infusion center. But his bed side manners ugh! He has a pill for everything. Tired? I have a pill for that. Anxiety? I have a pill for that. Having troubles remembering things? I have a pill for that. AAAHHHHH!!!!! So I found another doc who will hopefully be able to actually listen to me. She specializes in Lyme’s Disease. A lot of the symptoms with Lyme’s mimic the symptoms of MS. So my newest issue of having Anxiety attacks, when I have no reason to have anxiety, she knows what to do with. Also I am hoping that she will take me off of the happy pills. I like being happy. But I would like a better way of managing the debris floating around in my brain that makes me sad. I’m excited to go see her. I can’t wait until the anxiety attacks go away. It feels like you are having a heart attack. You can’t breathe. You feel like something is sitting on your chest. It is absolutely debilitating.

Alright, I feel I have probably talked enough for one day. I hope that everyone in the states enjoys their Independence Day/weekend.


Posted by on July 4, 2013 in Life with MS


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