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Tysabri or Bust

  
I am attempting to live in my own little world right now. I am craving that hut in the woods.

Some how I managed to set the bar too high. Not somehow. I do what I want, and how I want to do it. That is what set the bar too high. I am blessed to be able to do this. I love everything that I do and I want to do it great. Normally I feel like such a slacker. There are so many more things that I want to be doing, so many more things that I want to be learning! Right now however, I just want everyone to expect nothing from me. Right now I am capable of nothing. 

My infusion had to get pushed back a week. Which I know explains everything. Thank goodness I am here now. A friend of mine posts at every infusion how unhappy she is at infusion time. I don’t understand this. I look forward to my infusion like a life raft. I am terrified of the day that they take me off of Tysabri. 

This thought is what filled my mind on the way here today. Sometimes I wonder if it would make a difference. Do I only notice things that are wrong with me because I’ve already been diagnosed? My whole life I have been the “suck it up and deal” kind of person. I am still that kind of mom. “Is it broken? Are you bleeding? No, than stop complaining.” So why is it that now I am so sensitive with myself? I can still walk, talk, breath, eat, see. I can do everything! Is that because of the Tysabri? Probably. Let’s not think about it, right? 

If I am honest I know that the dizziness and the fatigue are not normal. But is it something that would send me to the doctors if I wasn’t diagnosed? No. Not ever. I’m surprised it did 6 years ago. Of course back then the crap with my eyes and the fact that my face went numb would have sent me. When I think about what I am going through now though, there would be no doctors. 

I feel very, very fortunate with my life. That said, I crave some serious alone time. No responsibilities. No, don’t worry about it Janet will take care of it. For a little while I’d like to be in my hut in the woods. 

Don’t worry world I’ll be right as rain tomorrow. Tysabri is coursing through my veins as I type.

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Posted by on March 15, 2016 in Life with MS

 

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Oh is it ever a new year!

So first, unofficial photo shoot under my belt. Weird. I am now a published writer. Ha! (Having nothing to do with the photo shoot, that was all about my husband. This is the life of the wife of a politician.) Ok, so all I did was write an article for our local town paper. But it’s out! It’s in people’s homes! Why, when I know that this blog has the ability to reach the entire world, am I so excited about an article that only reaches the members of my town? I don’t know. It’s something about seeing it in print. Something about seeing a title in a paper followed by my name. I love it!

There have been many other blogs, articles, that have talked about how people with MS’s life is split into two. There is the life that we started with, and then there is life after diagnosis. I have been thinking about this a lot recently. Yes, I am a little too familiar with some doctors now. But in truth, because of my right eye, I have always had issues. So all I’ve really done is add a new specialty. There are now new tests and I no longer have any issues with needles. I miss having issues with needles. I miss needles not being a common place thing in my life.

However, if you knew me before you may not even notice a change. My husband and kids notice a change, but random people that I see, let’s call them friends, probably wouldn’t notice. I myself have finally come to a point where I don’t see it as a before and after scenario. For the first year, ok 2 years, after diagnosis I was convinced that life would never be the same for me again. It didn’t help that I was on Copaxone, that wasn’t working and I had upwards of 9 new lesions at every MRI. But Tysabri has brought me back to life. No new lesions in 3 years. I’ll take it! Sure I still have issues from the previous ones. Those are things that are as of now unfixable. But I’m positive, I have put myself back out there in the world, my family is doing great, it’s a good new year! Now all I need to do is win the lottery so that I can go back to school. 🙂

 
 

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No Spoons

This is what I get for helping out. It is possible that this time I have really bitten off more than I can chew. For the first time….in forever….wait that’s a song. No, for the first time since I’ve been on Tysabri I have no spoons. I woke up with no spoons and it has gone downhill from there.

Ah! Now I can’t get the song out of my head.

I spent most of my day comatose on the couch. It is an absolute miracle that the kids made it to and from school. The world is spinning. My favorite part. And I have less than no energy. All of this at this point in the day would be fine. Great even. Rich is home so he can take care of homework and dinner. I should be headed to bed. That’s where I want to be headed.

However, this is not how my night is going to play out. I applied, and was voted onto the board of an organization. Have any of you heard of Main Street U.S.A? It’s really a great program. My town is part of the New Jersey Chapter. So now I am a voting member of Main Street Mount Holly. Exciting right? Well I hope it will be anyway. Tonight however, not exciting. It is my first meeting. And feeling like crap is not how I wanted to make my first impression. *sigh*

I think that normally I would be fine. Except right now I am 4 weeks and 5 days since my last infusion. Does that mean that I’m going to feel like this until next Tuesday? I really hope not. I have big plans tomorrow night. I’m going to see The Piano Guys in concert. Yeah! So I’m really hoping that I feel better tomorrow.

My big concern with tonight is my previous issues with my filter. Is it going the way of my equilibrium right now? I hope not. I guess as long as I can stay awake and keep my lack of patients in check it will all be good. I’ve done all of the prep work that I can do. Hopefully I don’t say anything stupid. 🙂

 
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Posted by on March 25, 2014 in Life with MS

 

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MRI results are in

I have what people are telling me is good news. It doesn’t feel like good news. But I’ll let you decide for yourselves.

I had my follow up with the Neuro on Monday. My left hand is still a little weak. The doc was very happy about the strength returning to my left foot though. My MRI showed no new lesions on my brain but still showed an old lesion on my cervical spine. He saw this as great news. That means that the Tysabri is working. He was very disheartened when he noticed that I was having problems. Join the club right? So Tysabri is still the super star. He told me that the old lesion that is at this moment still causing problems is in the T4 region. I nodded and pretended that I knew what that meant. When I got home I jumped on the computer to find out. T4 is the 4th vertebra down. The nerves in that area control all muscles from the abdomen and up. Which means it could not have been what was affecting my leg/foot. However it is what is affecting my left hand. That area also controls your  Bronchial Tubes, Common Duct, Gallbladder, Heart, and Lungs. So I guess that I should take solace in the fact that it didn’t affect any of those things. Maybe this is why I start feeling like I am having a panic attack when I am not panicking. But leave it to me to have a lesion in one of the few places that could actually kill me.

I know I know. Don’t stress. I can hear my husband yelling at me in my head.

Now, while the Neuro didn’t out and out say it, I believe that this lesion started acting up again because of stress.

I also now know that unless they did an MRI of my lower spine (the lumbar section) they wouldn’t know about my leg/foot. I bet that if they did that MRI they would find a nice big lesion in the L5 region. I guess that since the lesion was obvious without looking at my spine, why bother. It’s not like they can do anything about it anyway.

I still have the numbness on my arm, hand, leg, and foot. And the weakness in my hand and foot. It’s funny that the longer you are having the problem the easier it is to explain. At the Nuero’s when they had me explain how I was feeling I explained it so much better than last time that they wanted to know if I was having new numbness. I said no, I’ve mentioned it before. I’m just not panicky and cloudy right now. I like not being panicky and cloudy. It makes the world a nicer and easier place to be in. It’s frustrating that all it takes is the kids to upset me, ok anyone really, and I’m back in the cloud.

So yeah oh fun! All of this sounds like fantastic news doesn’t it?

I haven’t gotten the blood test back yet. They said that when it’s a study that is testing it, then it takes longer to come back. It could be another month. I’m not happy about that. Honestly though, it won’t make a difference. Now that I know that I don’t have any new lesions I’m not switching drugs. So if it comes back positive. I’ll just have them monitor my levels of antibodies. I’ll just have to make sure I am on top of my research about the JC Virus and what I should be looking out for. I am hopeful however that my results will come back negative and I won’t have to worry about any of this yet.

 
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Posted by on November 20, 2013 in Life with MS

 

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Is Snow good luck? I hope so!

It snowed this morning! Just enough to make everything white and beautiful. I think that it should do that every morning from now until March.

Today I’m back at the hospital. Just the infusion. No new catastrophes. I get my blood test back today. Hopefully that is good news. I don’t know what to do if they say that I have the JC Virus. Do I continue to risk my life on this drug? If I was still episode free I would say yes. Emphatically YES! I have felt so much better on Tysabri than I did on Copaxone. But i did have an exacerbation (I keep calling it different things because I don’t know what to call it). So if the test comes back positive is it still worth it? I don’t know. Hopefully it is a mute point. I’m just sitting here waiting for the news. Also to be hooked up. They are slow today. But my favorite nurse is back!!!! No needles in the hand for me today. 🙂
Of course on the way here I was thinking how it would be nice to avoid needles for a while. Maybe a bit longer than a couple of weeks. Wouldn’t that be nice?

My left leg from knee down still feels weak. I have been walking again though. I tried to do more strenuous exercise than walking but I only made it 10 minutes before the room started spinning. : ( I’ll try that again next week. Shaun T is going to have to wait.
My left thigh gets a hell of a work out with just walking though. About 2 miles in I start having to throw my leg forward to keep it going. Thank goodness it has still been holding me up though. No more falling for me! I hope, I hope, I hope.

Ah! Still no results. But at least I’m hooked up now. I’m off to loose myself in my book.

 
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Posted by on November 12, 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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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.

 
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Posted by on July 4, 2013 in Life with MS

 

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