Tag Archives: doctors

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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3 months ago I was told by my ophthalmologist to try a new contact lens instead of having a corneal transplant.
I was less than thrilled. Having tried hard contacts a few years earlier with not fantastic results, I did not want to go down that road again.
Back then the problem was that the improvement to my vision was not good enough to make me forget about the amount of pain that I was in. The doc informed me that these new lenses, the Scleral lens, was larger and there for less painful. I did not believe him. Having the surgery was also supposed to be cutting the virus out of my eye. Right now it sits dormant waiting to pounce once again. It was very exciting to me to find out that I could just cut it out and be done with it.
I love that idea! Oh, there is something wrong with you? Let’s just cut it out and you’ll be right as rain. This is why I was hoping that my diagnosis 4 years ago was a brain tumor and not MS. An operable brain tumor, I should clarify that. There is no cutting out MS though. Apparently there is no cutting out this virus either.
I finally bit the bullet and had an appointment with the contact doc. Actually I have to say that during the appointment he felt much more like a sales person than a doctor.
The nurse checked my vision. 20/40 in my good eye and 20/240 in the other. It doesn’t seem as bad as that makes it sound. Since legal blindness is 20/200. My left eye compensates a lot.
The doc comes in and starts talking about a contact for my left eye. I stopped him and was like, hey doc, that’s the good eye. Let’s leave it alone and deal with the other one. To which he tells me that the test that I just took says otherwise but he was begrudgingly willing to agree to disagree. This did not make me like him. Of course I already didn’t like him because he was the one pushing the glass of pain.
So he sent me to try a lens on. That was entertaining. It took me about 20 tries to finally get it in my eye. The lens is freaking huge! It covers most of your eye, whites included. I had to use a special suction cup to get it on. Then my vision was worse. Much worse. There was a prescription on the lens. Which clearly was not my prescription. After managing my way back down the hall they checked my vision again. This time they had that large black piece of equipment in front of me so that they could try different prescriptions. They turned the white box on and had me start reading lines of letters. I read down to the 20/30 line. I was impressed with myself that I got one better than last time. Especially since he had been trying to push a contact on my left eye.
But then they told me that they had the left eye blacked out. I was only looking at the white box with my right eye.
you mean to tell me that I could read actual letters with my right eye?!?!??? I could not contain my shock. I am still having a hard time believing this. Not only could I see, but I could see better than with me left eye!!!!
I was like, order one. Order one now!!!!
Let’s add to that the fact that there was next to no discomfort. No pain at all! I could tell that it was there. I felt almost like an itchy sensation close to the bridge of my nose. But otherwise no pain. I was/am thrilled. I can’t wait to actually get the lens and start wearing it.
Of course, the virus is still there. Unfortunately it was never a 100% guarantee that the surgery would cut it out anyway. So I am going to agree with my original doctor that this is definitely the better, less invasive way to handle it right now. I am still always shocked when I agree with my docs. In this case I am very pleasantly surprised. Right now I am hoping that my Christmas present will be being able to see!!!!!

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Posted by on December 10, 2014 in Life with MS


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