Lemtrada Year 2: Days 2 & 3

Notes so I remember:

Both days started with two needle sticks to insert the IV port. I've always had a really easy time with nurses finding a vein, but this week didn't go as well. Anyway, luckily she got it each day on the second try and the medicine started flowing.

I was super snoozy each day so I slept and then did the awkward jump and wake up thing in my chair.  I think the combination of Tylenol p.m. at night and a huge shot of Benadryl each morning knocked me out. 

On day two and three I had no issues with blood pressure or labored breathing; it was a very easy two days.

It was interesting to speak to the other two ladies who were also being treated for multiple sclerosis with the same medication. Before they were diagnosed, they had no idea what MS even was.

Multiple sclerosis is not new to my family.  I often think of my great aunt, Tia Elisita, my grandfather Federico's sister, who had MS. I only saw her a few times in my life but when I did she was full of smiles and sweetness. I remember her calling my dad "Peaches".  And then there's my Tia Aleida, my mom's sister, who also has MS. She is a fun and loving aunt and MS hasn't slowed her down. They are my inspiration and my reminders that life goes on, so keep on living it. 

Of course, my kids are also my daily reality check that life goes on.  On the homefront today, day three, was a cancelled day of school due to extreme cold. Luckily I had grandparents galore and our housekeeper to help out with the kids.

Then when I got home I had to make a phone call to the mother of a girl who is hosting a birthday party tomorrow. Gracie Jane is thrilled to be invited, but it is a semi-formal, boy/girl party so of course I had to speak to the parents to make sure there would be chaperones and no alcohol.

At the current stage of my disability, MS is a constant in my life, but it's not what matters most in my life. Not by a long shot. It's a PAIN IN THE BUTT, and some days very time consuming, but I'm thankful for my crazy, chaotic, LOUD family and friends to keep life
meaningful.


Year 2 of Lemtrada... DONE.

Now...gotta get these Christmas gifts wrapped somehow!  Life goes on in the best ways.  

Lemtrada Year 2: Day 1

Notes so I remember:

The day started with my daughter yelling at me because her brother got a flu shot yesterday and she didn't. (This from the kid we literally chase around the kitchen table to give her the shot each year.) My husband brought an extra flu shot home from work, my son willingly rolled up his sleeve and that was that. After convincing her to go to school and promising we'll get her flu shot ASAP, we got on the road to come to Fort Wayne. 

Two other ladies are  here getting meds alongside me. Looking at her, one looks like she walks ok. I was here with her last year, my last day and her first day. I remember she had a horrible reaction, she was so hot and we kept calling the nurse to come put fans on her. She's fine so far this year. Oh wait. Now we have one hour left and she's fading.  And she can't feel her legs. This medicine is scary. 

The other lady walks JUST LIKE I DID before I got my power chair. Her husband is here with her all day. He brought her in a wheelchair, but helps her walk to the bathroom. She told me she uses a walker at home. 

And me. I came in my power chair of course. My husband is with me and helped me in the bathroom. While in there we both yelled and I ended up sobbing. This medicine and this disease and this disabled lifestyle is scary. 

After the bathroom trip I asked him to leave for a while. We needed breathing room. The final 15 minutes of my medicine dripping into my IV caused some stinging in my hand. Seems during the bathroom fiasco we bumped the needle in the back of my hand and the meds still dripped in, but not in the vein. So I don't get to keep the port in, it had to be pulled out due to the puffy medicine just hanging out under my skin. I was told it will absorb through the tissue in my arm overnight and they'll put a new IV port in tomorrow. 

By the end of my meds, my blood pressure is high (unheard of for me) and my breathing is labored. We're blaming the steroids. (Lemtrada is infused after an hour of steroids and a huge sleeping beauty sized shot of Benadryl.) All patients stay after the medicine is done for a two hour observation period. Wish I could do a dance or a magic show to give them something fun to observe! 

The wifi here is sucky to non-existent. Luckily Netflix and Amazon both offer download-and-watch.  I'm getting caught up on Narcos and Transparent. And reading too, of course. 

I'm supposed to be drinking water like crazy, but going to the bathroom here has proven to be too stress inducing, so I'll drink tonight. 

(Water, Alina. You'll drink water tonight...) 

Can't wait to get home, hug my kids, hear the stories of their days, and GET IN BED. 

When Medicine is a Crapshoot

I was diagnosed with multiple sclerosis in September 2004, my daughter GJ was six months old.  Since then I have been on three "official" multiple sclerosis medications:

*Avonex, which was a weekly intramuscular shot with a ridiculously long needle. I gave myself that shot for seven years.

*Tecfidera, a twice daily oral pill.  In 2011 I started limping and noticing extreme leg weakness. My neurologist suggested that I try this new oral medication.  I was thrilled to stop giving myself shots, but the oral pills came with their own intense side effects.  While I was on Tecfidera, I slowly progressed in my decline in mobility.

*Lemtrada, a medicine given  through IV.  The first year is a five-day course of IV drugs, 8 am to 5 pm at the neurologist's office. I did my first round last year in early December. Next week I will begin my second round  of this medication, this year it is a three-day course. The goal of this drug is simple...  Stop disease progression.  The medicine wipes out the majority of my immune system. The thought is that as the immune system builds itself back up it will behave better, quit attacking itself.  

Stop. Getting. Worse.  I was, and sometimes still am, worried that I will be bed bound.

I did not journal or blog  last year when I started this medication. I wish I would have. I know that I was not walking well. I had my power chair at home, I got that last October,  and I was using my scooter out in public.  I was still able to transfer out of my scooter on my own, but it was very difficult. I know that my right hand was bad  and writing and typing on the computer had become impossible.  (I'm a lefty now.  Sloppy eating and even sloppier handwriting.)  I know that last year I didn't even go in for my second day of treatment because I had fallen in the night due to extreme weakness.

How do I know if it's working?  I feel like I'm worse than I was a year ago. I'm not transferring on my own at all anymore.  I need help in every aspect of my life, I just can't move on my own.  The fatigue can be crippling.

There are days when I think  that surely this is the worst it is going to get.  One year from now  I hope to be at least the same if not a little bit better than I am right now.

But on other days I wonder, what if this is good compared to where I will be in one year?

One day at a time.  I have to repeat that over and over to myself. I can handle today.

Sometimes my mind wanders and I get scared about the fact  that I literally can't live alone.  The list of things that I did independently for 40 years can go on and on and on.  I, who love to be alone and can get lost in my thoughts  for days on end, now have a caregiver with me 90% of the day.  I am simultaneously thankful and resentful of the help that I constantly get, yet consistently don't want.

Then I remind myself:  today. I can handle today.