“I needed something–the distraction of another life–to alleviate fear.” ~ Bret Easton Ellis
There are 6 traffic lights between my house and the hospital. How do I know that? I counted them.
I’m sitting on the passenger side looking out the window, listening to Adele and thinking about my future.
Will this be it? Is this the answer I’ve been searching for? Or will I have to modify my treatment again?
After months of tests and appointment changes, I’ve finally been cleared to start a new MS medication. And even though it feels like a weight has been lifted off my shoulders, I’m still scared. It’s like a relentless drumbeat of fear thundering in the air. Beat after beat, as we approach the 6th light. Then a quick turn and we are at the hospital.
Once we park the car, it begins to feel like I’ve reached the point of no return. I try to stay calm during the slow wheelchair roll down a long hall to the infusion center. Five straight days hooked to an IV. Everyday will be the same. 1 gram of Solu-Medro Steroids, 500 ml of Saline Bolus, 12mg of the new medicine and 2 hours of post monitoring.
But am I doing the right thing? Will this just be another misfire in my cursed search for a medication? No one really knows. The cure remains an unanswered mystery. So until an ideal treatment is found, I’ll lean on hope.
But I must admit, even my hope is spiked with doubt. It’s because my mind has been beaten senseless. Pistol whipped by the pain of knowing I can never get back what multiple sclerosis has taken from me.
And what hurts the most is the loss of memories. There was a time when my past was so fresh in my mind. I could pull up things without much effort. Now my strongest memories are my current actions. Those lost recollections are like time collapsing on it self. Gone forever.
Once the IV starts, my confidence builds. I begin to believe this new medicine will stop or at least slow my progression. I know I’m jumping the gun. It’s way too early to presume it has worked. And even though I have positive thoughts, I still can’t stop myself from going back to a place of doubt. Because I realize MS is so unpredictable. And thinking about it is driving me crazy. Therefore I try to concentrate on things I know for sure. Simple things that give me comfort.
So after I finish the infusion and leave the hospital. We get into the car. I sit on the passenger side. Listen to Adele. And count the lights.
6 traffic lights back to my house.
Is the new drug Lemtrada? I’m about to start it in the next few months. Ever optimistic. 15 years with the MonSter and Im dubious, but not ready to give up just yet. Love your blog, big hugs
U figured it out. It is Lemtrada. It’s been 1 month, so I don’t know if it has worked or not. First blood draw this week. My hopes are still up. Tell me how it works out for u.
you stop light is so me… I go to concerts with my husband and it doesn’t sink inside my head like they used to. I knew something was wrong but covered it with I will see a DR after I do… it took for my right eye to go blind for me to go to the DR. Now that I have been diagnosed I am still fighting MS thinking that the Paleo diet or the medication will subside the symptoms. Hot or stressful days remind me that I have no fight against this disease. It is a terrible disease and I am three years that I know of into this. I believe that my natural mother gave me to my father after they divorced because she might have had MS. I look sadly at my children and try to educate them while I can
Hope you’re well and the new MEDs work for you. I’m still battling my first relapse and you continue to inspire me…thank you!
It is obviously a long while since I last stopped by your Blog.
I am loving the new theme of the site. It make it look and feel so much more professional.
You have incredible courage and so selfless to share with us!
Hi Nicole, so happy to hear that you have started Lemtrada I am so hoping that this is the one! Thank you for sharing your feelings and experiences with us. Please sign me up, as I will be your BIGGEST cheerleader. I will be routing for you and Lemtrada. Take care hoping to hear great things in your next posts.
I just cried reading your article nicole. Its like you took the words right out of my mouth. I processed everything afterwards, and knowing someone els thought and felt everything i did… its heart wrenching. Keep looking forward, keep your head up, and know we are all fighting. Xoxo
Good Luck Nicole! There is a great Facebook group of Lemtrada users that I hope you will join….
I believe you’re starting Lemtrada, right? I’m about two months post and am encouraged by experiences of other SPMSers’ like myself. This video blew me away!! It’s not until about 1/3 to 2/3 through that he gets to folks like us. God bless you on your journey, Nicole!
Good wishes to you. I believe lemtrada is our hope right now, next stop would be stem cell therapy. May your M.S stop dead in its tracks!
Nicole, I think you’re a wonderful person! When I met you briefly at the MS Getaway this year, I kept you in my prayers,and I’ve even sent you a message to your inbox about some new information I’d found recently.
I’m praying for you Nicole!
~ Miracles & Blessings
God bless you. Thank you for sharing your written words.
Nicole I pray right now for your continued strength, faith, courage and determination. You are such an inspiration to so many. I hope we, too, can inspire you to keep a positive outlook on this moment and the future. God bless you and your family!
I pray that the treatment works. I will be trying something new for my MS when I get to new home in Idaho next month.
Hi Nicole – I am praying for you as you go through this treatment! Praying it will really help! So wonderful to meet you at CAN DO!
The memory stuff is what hurts the most for me, too. It seems like more and more details of my life are ending up in this massive black hole in my mind. It’s scary. I’m only 44 and my mother is worried I have dementia. Wishing you the best of luck on Lemtrada!
I wish you the best wit this new med, Nicole.
You are amazing. You are strong. You give me hope. Xo
You are such a fighter and a warrior. Often times, I do not comment but I reach each of your blogs. It’s therapeutic because you put into words sometimes what I cannot. Did you experience side effects thus far? I am always wary of using my last option or is it really our last option you know? My husband is very caring and protective,I just worry about the future. I think all of us do. Just live life and keep moving! Lately,I have been having these chest pains so bad go to doc they find nothing. Ever experienced anything like that? Sending you blessings and hugs that this med is the one!!!