Tag Archives: infusion

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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(Insert sad puppy face here)


So as promised, this is a picture of our snowman, and my boys. Sad I know. But we had fun making him. 🙂

The eye doctors went well. He said that it looks much better. I asked him if he could be more specific about the scar. Maybe draw me a picture. He said that it was like wispy clouds over my eye. Like a full on haze that just gets thicker in some areas. Unfortunately he was not up to the task of drawing it. 😦 He is hopeful that we caught it soon enough this time that the scar won’t grow. The nurse did the vision test again. It turns out yes there is a big E. But she tricked me. It was the first film that she showed. So there I was looking at 3 thick fuzzy lines. It could easily have been three lines of letters. I had no idea. And since we hadn’t already been through the smaller letters I wasn’t quick enough to lie about it. So now it is officially on my record. “Can’t read the big E.” Ah well, what can you do?

At my infusion I followed my usual routine. Pick my chair, take my coat off, sit down, take my shoes off, don my adorable infusion booties, break out my book and blanket. Then the nurse walked over and says “wow you haven’t given up on that book yet?”.

I hadn’t realized that I had been reading it for so long. It’s been 3 months! And it’s not like Pride and Prejudice that I’m not still reading, but reading over and over again. How embarrassing!

It’s a Stephen King so of course it’s very long, but still…

I told my brother that I was reading “Under The Dome” and he got so excited because he had wanted to read it. So that weekend he read it expecting me to be done so that we could talk about it. He read it in a weekend!

Yeah… So now I am shame faced and determined. This book will be done before my next infusion. 🙂


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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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Back in the Chair

Fare warning, I am going to talk about my boys and a tiny bit about religion.

(I forgot my ear buds today. : ( well it was sad until I stopped at cvs to pick up a new pair. : ) which was so worth it that this blog might have gone a totally different way. For one thing they work a whole lot better than the ones I was using before. And most importantly the person that just took the chair next to me is having a lengthy conversation with her mother in what sounds like Portuguese. )

My 5 year old, Noah, and henceforth to be referred to as THE BEAR, had a nightmare the other night. He was staying on the couch in my room due to his room momentarily being converted into a guest room. So when he came to my side of the bed, that he had to pass his father to get too, he climbed in without saying a word. I decided to make room for him instead of sending him back to his bed. I figured he’s in our room anyway, might as well. I got restless lying on my left side so I grabbed the bear and rolled with him so that now he was in the middle of the bed. Well halfway through the roll he goes “are you kicking me out?” In the most horrified voice. This is the first thing that he has said since climbing in. My poor little bear! So I reassured him that I wasn’t and he wrapped his entires body around my head like an octopus. He was terrified. After calming him down I asked him what was wrong. He said “I’m seeing things that aren’t real!” In a horrified voice with tears in his eyes.

LoL even now I’m laughing just recalling this. : )

After I stopped laughing and peeled him off of my head enough so that I could breath I explained that he just had a nightmare. Possibly his first since he clearly didn’t know what was happening. He spent the rest of the night glued to my head. Not hugging me like a normal child. Not sleeping next to me just letting me drape my arm around him. But wrapped around my head, knees under my chin, arms wrapped around squeezing my ears. It was not the most comfortable thing in the world. But I’ve never seen my little bear so scared. So I let him stay however made him feel better. When the sun came up in the morning he said “can I get out of this room now?”

I found out later that he was under the impression that there were eye balls on the ceiling staring at him. That is pretty creepy. Poor kid.

The other thing that I wanted to share is about my older one, Tyler.

He is now an alter server at our church. This came up all of his own volition. And to be fair, I always wanted to be one when I was little. I told him that and he said “well then why didn’t you just sign up?”. I had to explain to him that when I was little girls weren’t allowed to do things like that. Talk about making me feel old and deprived as a child.

Anyway, not the point. : )

So we sat upfront to watch him. He is so grown up! Watching him up there, I could not have been a prouder momma. Love that kid! This was, obviously the mind set that I was in. My kid is awesome and now everyone in church can see that. Then the Eucharist part of mass happened. I knew that one of the things that the kids do is wash the priests hands before he touches the host. But to see if happen!!!!!! I had a surge of red hot anger run through me. How dare this measly old man think that he is so much better than my son that he has him washing his hands. How pompous can you be?!?!? It’s possible that I have an eternal hatred for this man for this. It might not have been so bad if he didn’t have this look on this face like “Ugh! A new one that doesn’t know what he’s doing. Stupid kid.” I really hope that that was not what he was thinking, but it was certainly what his face was saying. So So Angry!
Alright, I’ll get over it. And clearly no one else was bothered by this. The anger was just running rampant in my head and the rest of the mass was going on as usual.

I know, it’s clear that I have issues. : )

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Posted by on February 5, 2013 in Life with MS


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My Cautionary Tale

I do really, really want to blog about the election and what it was like and still is like and all that is involved. But right now I have a cautionary tale.

My next infusion just happened to fall on Election Day. Now with my husband running for a political office, I had to be there. So I tried to reschedule for the next day, or as soon as possible. Well apparently it is not that easy. The next available spot was my usual time a week later. In hindsight I guess I should be thanking the powers that be that I didn’t have to wait a whole month. These past couple of days have been frustrating. I feel like I did before I started the Tysabri. I’ve been making it till about 11am. Then it’s all over. I have to lie down after I take a shower because the room is spinning and moving seems impossible. And if the kids stress me out with their bickering and their sword fighting I get ridiculously mad and cranky. Poor kids have to put up with my BS. Not to mention the fact that my left foot and knee are having issues again. I think that that is due to the fatigue but REALY?!?!
Yeah, so it is official. Do not push back your infusions people. Do not reschedule or skip one. Unless for some reason you need to be reminded why you started taking it in the first place.

I can not wait until next Tuesday!

Just one other thought.

I finished the book my sister gave me; review is coming. Now I am reading book two of the Fifty Shades series. I really need a nice clean book after all this though. 3 insatiable books later, my mind is a very interesting place to be. Which is great, but I feel like I need to get out a book that has something other than sex in it. Not that I am not loving every bit, but I swear my IQ is going down. 😦

Sent from my iPhone

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Posted by on November 10, 2012 in Life with MS


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Infusion Day

I just got a compliment that I have never received before. While walking through the infusion center a woman said “You walk so well.” I laughed. I thought that it was funny. It seems like a strange compliment. However, then you have to take into effect where I am. I hope that the woman isn’t mad that I laughed.

My JC Virus antibody test came back. It was negative. So no JC Virus yet for me. Yeah! I like knowing that my brain isn’t going to slowly turn into pudding. One more year of Tysabri for me. Hopefully my next MRI will go just as swimmingly. That’s not for a couple more months though.

Rich came with me this time. My mom came with me my first time and compared the experience to when she had to go with her mother for her chemo therapy. Which I didn’t realize is also an infusion. There was also a time when I brought my mother-in-law. Not on purpose, but she refused to let me drive myself. Well she was very upset. Of course she was very good at not letting me know that she was. When we got back to her house I over heard her talking to my Father-in-law about it. The gist was “I can’t believe what she has to go through.” That surprised me. I never really gave it a second thought. What the medicine is doing and how scary the side effects can be, sure, I gave that a lot of thought. But not the procedure itself. My only thought was, thank god I don’t have to give myself shots anymore. I was relieved. Now I get to let someone else stick me. Then I can just sit here and read my book. Or blog as I am doing right now. I get to give it time if that makes sense. When I was doing the shots it was; do the shot, pretend it doesn’t hurt like a bitch, and continue to get the kids ready for school, or whatever we happened to be doing that day. There was no sympathy or understanding. It was “What’s taking you so long up there?”. But now, now it’s a completely different story. Now the process of getting the meds is so much easier. Except apparently it’s scarier for my “mothers”. My Mom buys me coffee every time before my infusion and my Mother-in-law makes sure that I get all the rest that I need. Offers to drive me and watch the kids. I am feeling spoiled. Rich however I think is not going to have a similar reaction to this. This will just be another day for him. Seeing how he was the one who had to help me with my shots some times and he is the one that had to do my steroid infusion. He will see this as the cushy chair infusion that it is. But at least he took time out of his ridiculously busy schedule to come with me. And before elections too. I really am being spoiled. 🙂

Now it’s back to my book. I am reading Beauty’s Punishment by Anne Rice. It’s very good. This is the second book in her Sleeping Beauty Series. There was a prologue by Anne that helps put in perspective the things that made me mad about the first one. I have never been a fan of the whole slave aspect. The idea of having to do what someone tells you and being punished If you don’t. Especially the degrading things that Beauty is told to do. I am learning with this one to just give in and enjoy instead of needing to be in charge of everything. Listen to me, like I’m actually in the book. Well Anne is yet again opening my mind. Love that woman.

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Posted by on October 9, 2012 in Life with MS


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One Year In

Blogging single handed today. Unfortunately my other hand has been rendered useless due to my IV.
I am very excited/nervous/scared as hell right now. The infusion center took my blood today. Hence the different location for the IV. Normally it is in my left hand or wrist which still gives me most of my mobility. Now I am concerned that I won’t be able to read my book. More on that in a sec.
So they took my blood because apparently it has been a year and now I’m being tested for the JC Virus again. Yeah! And at the same time, Oh Crap. I don’t even want to think about the consequences of it coming back positive. I probably should so that I am prepared and know what I am going to do. UH!!! I’ll think about it later. It’s a crazy week and I have way too much to think about, plan, and do to get all upset about this. UH!!! I had totally forgotten about the stupid JC Virus. I haven’t been worried about instant death (slight exaggeration) in a while. UH! Time for another Yoga class.
Positive thoughts. I just need a possible contingency plan.
Well, back to the book that I’m not sure I can read one handed. My Mother-in-Law has given me a self help book about love after marriage. Maybe I’m complaining about Rich too much. 🙂 Love you sweetie. I started reading it just because I knew that I would be quizzed about specifics when I handed it back. Well so far it’s not that bad. Course, I’m only a chapter in. I have never been a fan of self help books, but I am keeping an open mind with this one. But while I am reading it I am very thankful that Richard and I are on solid ground in our relationship.
Side note; There is a woman here that is complaining about everything. It is driving me nuts!
Hopefully after this infusion my left leg and my eyes get back with the program. The last week or so hasn’t been a lot of fun. Very excited that the kids are both in full day of school though. More time for me! 🙂

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Posted by on September 11, 2012 in Life with MS


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