Ocrevus

I have completed my first 2 infusions of Ocrevus, the very first disease modifying treatment for progressive MS. I had no allergic reaction and do not see any side effects. And now I don't have to go back again for six months!

May the end of my MS progression begin!

Do you ever get mixed feelings?

Why is it that good news can make us sad?

First, I got word from PA saying I would receive 62 hours of home health services per week. It was a long process, and I cried with relief when I got my wish. Life got a lot easier. Whew! But then I felt sad about needing the help in the first place.

More recently, I learned that the first ever treatment for progressive MS, Ocrevus, was approved and available soon. I've been hoping for years to find something to stop my abilities from declining. Again, relief that help is on its way! But I also feel sad that it's even necessary.

I guess I've found ways to pretend life is just fine. In some ways, it is. I have lots of love from friends and family. I have a beautiful home and lots of things I enjoy doing. I'm good at focusing on the positive. Sometimes things shake my reality. Physical care and advanced medicine are two things most 46-year-olds don't have to consider. I do.

We take the good with the bad. So it's okay to be happy and sad at the same time. It just feels odd.

Thanks for listening!

patient

1. 1 :  bearing pains or trials calmly or without complaint
2. 2 :  manifesting forbearance under provocation or strain
3. 3 :  not hasty or impetuous
4. 4 :  steadfast despite opposition, difficulty, or adversity

Are you patient? I think I must have been born with a patient gene. 

As a teacher, I had lots of patience for my students. They had struggles, and I think my calm, easy-going manner was helpful.

I have daily frustrations with MS. I have honed my patience over these 20+ years. My mood is always better when I can calmly face my challenges.

 

Now, I am nearing the end of a new test of my will to be calm. I moved to PA in September 2016 and immediately applied for a state program to fund my home health care. The application said "30 to 60" days. It has now been over 5 months!

Sigh. All I can do is wait. I'm tired of complaining but I can't seem to help myself.

Thanks for listening. 

Wishing you patience when you need it!