Update for 2017

Happy New Year Friends! Time is flying by and I cannot believe 2017 is already over. Megan is thriving at A&M, making a lot of friends and enjoying the Aggie experience. She is now a psychology major. As Aggies and Aggie parents we could not be more proud. Mason continues to excel his junior year and plans to join his sister at A&M in 2019. X Box, fishing, and baseball are his favorite activities. We spent time in Vancouver last summer and had one last trip to our beach house in Surfside before it officially sold. Mason and his dad spent a few days at Falcon Lake down south on the border of Mexico last summer and again after Christmas. We just back from a wonderful trip to Cabo with family. The weather was gorgeous.

As for me it is day by day, hour by hour. There is nothing fun about MS. The disease is progressing faster than I could ever have anticipated and I am learning to live with disability. I am so thankful and blessed that I have a loving, supportive husband and wonderful friends and family who are always there for me. It isn’t always easy. It isn’t always happy. Most people really don’t understand how difficult it is for the caregiver, not just the patient. But we are working through the hardships, day by day, learning how to enjoy life despite the challenges. And always thankful cancer has become an afterthought.

The biggest question is still always “How are you feeling?”. I will try and give you some perspective but remember every day and every hour the answer to that question can change.

If you have seen me this past year you know I have a lot of trouble walking. Two years ago I was mostly just using a cane. Today I have a cane, leg brace, walker, scooter, and wheelchair. I use my walker around the house mostly. Outside of the house I can use a cane or walker for short distances but even walking into an appointment can be difficult. My scooter is always in the back of my car in case I need it. Sometimes at home I will use the wheelchair if my legs get too tired. I don’t know anyone who accepts these things with ease. It is important to maintain mobility as long as you can but difficult to do without pushing yourself beyond your limits. It does get easier and now I am grateful for assistance. I could not maintain independence without it. It is my left leg that is affected which thankfully does not affect driving.

My other symptoms literally come and go all day. Besides limited mobility the hardest thing to deal with is just not feeling good mainly because of dizziness and fatigue. On a bad day both usually happen at the same time. On a good day it’s just mobility. The best way I can describe it is to compare it to when you are sick. You’re not terribly sick but when you walk around your head feels “out of it” and you just feel like lying down. You want to to get up and go but as soon as you do too much you realize you need to sit down. Some days I can do a little more, some a little less. Resting usually calms my symptoms temporarily. There is no predictability. I could be having a bad day and all of a sudden start feeling better. Occasionally, usually at night, my walking significantly improves and I find myself not needing the walker as much. I am always grateful for those moments and for good days. I am thankful for good friends who invite me on outings and always offer to drive or drop me off or just offer assistance. This disease is not easy for me to understand and I know it can be puzzling to others. There are a host of other symptoms that can happen with MS. Most of my other symptoms are manageable.

I have started a new medicine that is supposed to help slow the progression. I would say my progression is pretty advanced but there’s always hope. At this stage I will take any delay I can get. The medicine is called Ocrevus and was approved by the FDA last March. The side effects are less and I only have to have an infusion once every six months. The other drugs I have tried required injections 3 times a week and made me feel terrible. I am also still taking a medicine called Ampyra. Without it my fatigue and mobility are worse. I still follow a fairly strict diet avoiding gluten, sugar, dairy, and red meat when possible. I’m not as diligent as I have been in the past but I am pretty consistent. Although diet has not impacted MS I do believe it is helping me stay cancer free which is my motivation.

If you follow my blogs you know I put it all out there. This is my journey. MS does not follow a designated path and is different for everyone. Some people fare better than others. Many people my age live a fairly normal life with occasional relapses. I have always been an optimistic and positive person when it comes to my ailments but I am also a realist. I know someday I will be using a wheelchair full time. Maintaining independence is important to me, one day at a time.

Facing an uncertain future can be a challenge. How do you live your fullest today, plan for tomorrow, and try not to worry? If I figure it out I’ll let you know. But for now all I can do is remember the many blessings I have in my life and be thankful - day by day, hour by hour.