The Drug

I'm finally breathing a sigh of relief.

Relief that I have done all that I can do at this moment to better my health. 

Relief that I have gotten past the anxiety of starting something new. 

Relief that I am on the mend. 

So far the worst part about this journey has been the unknowns. The unknown of what is actually wrong with me, the tests, the results, the medicine.

I won't lie, I am an anxious person- and even taking something as simple as a Tylenol can make me second guess how my body will react. So when you are put in a situation with a drug that - according to my wonderful nurse - "most everyone will have an allergic reaction" you don't feel good.

2 weeks ago I went in for the first half dose of my medicine. The medicine is given in two half doses so that the body can adjust. 

Look here I am at my first infusion.

We were greeted by possibly one of the nicest nurses I have ever come in contact with. She immediately took my nerves down from "total freak out" to "okay I might freak out." As I sat down in the chair I actually started crying and laughing at the same time-- it was a pretty awesome sight. Once I calmed down (the nurse hugged me like 10 times) we were ready to go.

The drug is given to you by an IV and it can take 6+ hours to administer.

Before you get started you are given IV Steroids, Benadryl and Tylenol... okay great, so they are preparing you for something.... deep breath. 

The medicine is administered in slow doses that increase every 30 minutes. The fun part? Well knowing that the "allergic reaction" doesn't occur until about an hour and a half in... okay so i'll just sit here and wait.... for my throat to close. 

As I anxiously smiled around the room, made small talk with the nurses in the back of my head I kept wondering "WHAT THE HELL AM I DOING?! WILL THIS EVEN WORK? AM I EVEN SICK? IS THIS ALL IN MY HEAD" 

The minor meltdown kept my mind off of the hour and a half mark. Which came and went with no issues.

Lucky for me I was one of the odd balls (surprised?) that didn't actually react to the medicine. So after an hour observation I was sent on may way to relax through the weekend.

When I returned home I was pretty exhausted, weak and just not really "present" with the real world. This feeling lasted for about 5 days and then I started feeling back to myself.

The second dose was given to me last Friday. This time it went much smoother- less anxiety and a quicker bounce back time! 

I am currently 4 days out from my infusion and I'm already bouncing back quicker than round 1. 

Now it is a waiting game. 

I go back in February for my 2nd does (this one is given all at once). In the meantime I will have a MRI in November-ish to make sure nothing is progressing. 

The plan is for me to be on this medicine for at least 2 years. After the 2 year mark we will take a break and see how my body wants to repair itself.

The goal is that after the 2 years my b-cells (the ones that over-active and that we are killing off with the meds) will learn to grow back at an acceptable rate, and stop attacking my body and just do what they were intended for! 

So how am I feeling overall? 

I'll be honest, this summer was rough. I had new symptoms (dizzy, shaky, heavy legs, anxiety, numbness in my legs)- the heat has been BRUTAL.... the disease is active and I can feel it.

I will say I am hopeful. The week between my two infusions, felt good. I had energy, the numbness in my legs were back to tolerable and I felt an excitement of whats to come.

For now I get back to focusing on my diet and exercise (which is SOOOOO important with this disease --- even the days where my legs feel like 100 pounds each YOU HAVE TO MOVE! ) At this point I'm not actually sure what "normal" feels like, so I'll just say I'd like to feel better than I have this summer. 

Again, thanks for all the support for the past 2 weeks, If I could bottle up all of that love and put it in my IV- I bet I would be cured. 

<3