Day 5

Days one through four were perfect!  Day five was awful!  

Part of the reason was that instead of Monday through Friday, which is the way most people do Lemtrada, I did Tuesday through Saturday. During the week, I had my routine, being there on a Saturday completely threw me off. 

Instead of having Lloyd with me, my mom was there. Lloyd had to come up for a visit though, he had to run up my blood pressure medication when that spiked for a reason I couldn't figure out at the time. Then I did; I started my period.  Between the Lemtrada, the steroids, and being cooped up, my body was going crazy!  

Treatment week is now behind me, never to be repeated. Yes, I know I'm going to have another three days of treatment a year from now, but three is a lot less than five. I also know that I'm going to have other challenges with this treatment. It's a marathon, not a sprint. 

Day 4

Started a new IV for day 4 and 5 today. Very tired and can never sleep. 

Treatment went fine, less steroids today, but the "'Roid Rage" has hit me like a ton of bricks tonight!  

I feel like I want to rip something; and it seems to mostly be my husband's head off his body!  I admit that it's not his fault, and we both knew this was coming, but it still stinks. 

I know my emotions will regulate eventually, but until then, I'm stuck being an evil green monster. And I still have one more day!

Day 3

Day 3 was largely uneventful. I spiked a bit of a temperature (99.3). It went back down after ibuprofen.  The day took a little longer because my regular nurse was out and will be for the rest of the week. She's going to a graduation out of town. I also had the IV taken out at the end of the day to start day 4 with a new vein. This also has me worried because I'm not so great with needles and I don't know if the new nurse will be as good as the last nurse. 

The bad thing happened when we got home. Angela had a restless nights sleep the night before, so I was expecting her to nap. She was asleep on the ottoman when we walked in. As she woke up, her fever spiked. This is more of a problem because she has had febrile siezures in the past. 

We gave her ibuprofen, and Lloyd took her to urgent care where they found no infection, but they gave her amoxicillin anyway. We were up all night watching the temperature. The insomnia from the steroids helped.  No siezures and she slept ok. 

But this is what I'm the most nervous about. How do I deal with having no immunity and a three year old?  I asked my nurse about it, and she said as long as I use lots of Lysol and Chlorox wipes and wash my hands, I should be fine. She also suggested I wear a mask if she gets really sick. 

Day Two

Day two was completely uneventfull, so this will be short. I'll run through the daily protocol as it is supposed to be, since on day two it happened exactly as it was supposed to. 

Arrive, get line flushed with saline and then a shot of IV Benadryl. 

1 Hour steroids

Flush with saline 

4 hours Lemtrada itself. 

2 hours Saline drip and observation

Still no side effects, apart from a little insomnia. No headache, no rash. 

Day One

I had the alarm on my phone set for six, but Angela wanted us up earlier. She decided to wake us up at about three. By the time I got her settled, it was around five thirty. 

We hit the snooze alarm until six thirty. 

The drive to the infusion center at my doctors office was easier then I thought it would be. Traffic was light and we got there early. We walked in at 7:30. 

I was given a private room with my own TV to seperate me from people who were there for other infusions. I was told I could leave non valuables there from day to day if I wanted. My IV was started and the steroids were off. 

My blood presure was a little high because I hadn't taken my blood presure meds, so a back up perscription had to be called in before I could start Lemtrada. I almost cried, but thankfully, there was a pharmacy in the building, and I was able to take the pill, then switch from steroids to Lemtrada.  It was a non issue. 

The thing that surprised me the most was how much I had to use the bathroom!  I was up quite a bit. And the IV stand was not easy to roll. There also were not enough bathrooms for all the patients, but it turned out to be ok. 

Day one was pretty easy. No major side effects, just a slight headache that was cured by some Motrin. 

I got home to Angela who was very happy to see me. She didn't even notice the IV still on my arm, though wrapped.  

Looking forward to tomorrow. 

Preparing for Quarantine

I had round one today, but I'm behind on posting, so I'll talk about the long weekend first. 

It was the weekend before treatment, and Memorial Day weekend, so I decided it would be a weekend of fun, since Mommy can't do as much fun stuff after treatment this summer. 

The weekend of fun began on Friday because Lloyd got off work a bit early. We all put on our bathing suits and went to the neighborhood pool. We don't have the best neighborhood pool, but it's fun anyway. Angela got to play in the kiddie pool while Mommy soaked up some much needed Vitimin D from the sun, hopefully some of it got through the waterproof sunscreen. 

After about an hour of splashing, we went home, got dressed, and went to eat Chinese food with my aunt, my cousin, and her daughter.

Saturday, it rained, so we didn't do much. 

Sunday we went to the San Antonio Zoo and luckily, the weather cooperated.of course the animals are the main draw, but we like going to the artificial beach they have there.  Unlike the real beach, the water is only ten inches deep!  It is still tough to walk, but when Lloyd is there too, it's not so bad. 

Monday was DoSeum day!  For those of you who aren't from San Antonio, the DoSeum is the children's museum here. It's been open for about a year and we love it! It's great because there is a lot to do indoors. When mommy is heat sensitive, this is a really good thing!

Angela got to cook on the food truck! 

Monday was also the day my mom came in from Houston. I am very thankful she was able to come and watch Angela while in doing treatment. We took her out to a thank-you dinner at Saltgrass Steakhouse. The funny thing is, we all ordered chicken!  

Why I'm starting this Journey

I was diagnosed with MS in July of 2014. My daughter was about a year and a half old at the time. Just after my diagnosis, both she and I headed to preschool, her as a student, me as a teacher. 

I made it through another year of teaching preschool, but I almost didn't. All the symptoms were getting harder and harder to deal with. I was taking medication (Gilenya) and it worked moderately well, but I still couldn't function as well as I did. 

I decided to take a year off and focus on my daughter. This coincided with the time I was taken off Gilenya due to liver issues. Then my husband switched jobs, so I couldn't start a new med until my new health insurance kicked in. Once it did, I saw my neurologist for a perscription for Copaxone. Right before I was going to start, I had a relapse. Between the relapse and the injections, this was not pleasant. I decided to go see the doctor again. 

I was hesitant to try Lemtrada for a few reasons. The first of witch was that I didn't know if I could have another baby after taking it. Then I found out, I could still have another baby as long as I waited until four months after treatment. Second, I was worried about the drug itself. It was only approved by the FDA a year and a half ago. But I found out that it had been used in other parts of the world with success for years. The third, which is still bugging me, and the main reason I'm starting this blog: how will having my immune system essentially whipped out affect my ability to be a good mom?  

I officially start Lemtrada on May 31st, and my first round will last Tuesday through Saturday.  I am going to spend the time during the day at the infusion center that is attached to my neurologist's office.  My mom is coming in to take care of my little girl Angela. My husband Lloyd is going with me to the infusion center. I'm getting ready to start this medicine that will hopefully give my my life back.