“Your pain is the breaking of the shell that encloses your understanding.” ~ Khalil Gibran
I named my blog My New Normals because it describes my life since being diagnosed with multiple sclerosis. I live with constant change. Just when I become acclimated to a new symptom or damage caused by an exacerbation, a new problem seems to surface. Knocking me out of my comfort zone of remission.
You would think since I’ve been living with MS for the past 15 years, I wouldn’t be shocked by change anymore. But my latest new normal has knocked me for a loop.
My doctor sent me for a routine MRI a couple of weeks ago. Over the years, I’ve done several MRIs. It’s just after this one; I received some devastating news. Well, maybe not devastating. That’s a little too dramatic. My husband often tells me I’m being melodramatic. So, I’ll try to stick to the facts.
The MRI was needed to evaluate my progress since starting Rituxan as my multiple sclerosis medicine. The drug is infused once every six months and at this point, I’ve had four doses. Yet MS is still lurking around. I thought by now it would have at least stabilized the disease progression. Instead, since beginning the drug, I’ve had no noticeable improvement. As a matter of fact, my baseline has dropped and I’ve had a continued steady slow decline in function.
I know, devastating right? Well that’s not the bad part. The bad news is, after getting my MRI results; my doctor told me I had new lesions on my brain.
This is the same doctor, who in the past informed me I had too many lesions to count. So my first reaction was, “Wait! Now there are more lesions?”
I’m scheduled to see my neurologist again next week. I know he wants to change my medication. And in the end, we both want what’s best for me. So I plan to follow his lead and hope whatever we decide won’t have too many bad side effects. I just wonder what he has in mind at this stage in the game? After all, I’m secondary progressive. That means there’s no medicine available and because of that my fear is mounting.
So forgive me for being dramatic but that news truly hit me hard. I know I’m not dying or anything like that, it’s just so upsetting that no matter what I do, I keep getting worse. I’m so scared and I just want to wake up from this nightmare. But I can’t. It’s not a dream. It’s my life. And the reality of my circumstance is making me sadder than I have been in a long time. I guess you can’t get to comfortable in remission when you have a progressive disease.
I love you love sweetheart!
Hey Nicole-I was just looking at the website for The Ann Romney Center for neurological diseases at Brigham and women’s hospital and who should I see but YOU on the title page! Have you visited the center? I just listened to her book,
“In This Together: My Story” on the Audible app on my iPhone. It was very impressive. Now that we LIVE in Boston I’m hoping to visit the center.
Thank you for all of your messages–I love hearing from a kindred spirit! 😉 But not so happy that we share this horrible disease 🙁 Let’s keep praying for a cure!
Oh Nicole,
I am so sorry…I too am SPMS
This disease is friggin scary.
Right now I am on a chemo drug, cytoxan.
It is suppose to keep me stable.
I am stable so far, and actually seeing improvements.
Never give up!
I didn’t realize with SPMS, we can still get new lesions.
Learned something new 🙂
Faye
Dear Nicole,
You have every right to be dramatic, scared, sad, fearful etc. I can so relate to your comment about waking up to a new day and a new symptom just when you had finally gotten into a routine. I have new lesions that are playing havoc with my body too and it is no fun. It is just my husband (of 27 yrs) and I in this world. I have had the luxury and stress of him being unemployed for the past 6 mos but he starts a new job on Monday and I am so scared because I’m not sure how I’m going to take care of myself. But it is one baby step at a time right?
Nicole;
I acknowledge that you are scared. You have EVERY right to be. You are one of the bravest people that I know. I am daily in awe of what you do and how you face life – often with a smile even though you are terrified. Life has given you some rotten apples. Allow yourself to grieve for everything that you have lost. Know that I will be here with you through it all. I feel so fortunate to have you as a friend.
Best luck with the doctor next week!
Nicole,
it really is a scary disease. I´m so sorry to read that you have more lesions. I will send you a lot of thoughts all over the ocean. You are in my mind 🙂
//Helen
Hi Nicole,
Thank you for always keeping it real and I’m sorry for your recent report. MS sucks and I’ll keep running until my legs fall off to raise awareness and funds for a cure!
Your friend,
Tim
#MSRunnerDude
Nicole,
I have ppms and understand your frustration at the absence of answers. Thank you for having the courage to share your ms struggles as you speak for those who can’t share.I will pray for you and your family fervently and humbly.
Continue to let your light shine !
Vivian
I am so sorry to hear this Nicole. What is so important about your blog is your honesty and your readers thank you for sharing all of it. I am sending you hugs and prayers my friend.
i hear you. that fear is real. i’ve been SPMS for several years. while there is nothing available at the moment (except symptom management), i hold out hope that progress is being made. it is difficult sometimes to keep going in the face of uncertainty. but we do. today is a bright crisp fall day, and tho i am sitting in a wheelchair, i’m here, reading your words and writing my own and digging the gorgeous fall colors and thinking about today and tomorrow. i try to keep that fear pushed to one side when i can,try not to let it swallow me whole. keep in touch. peace and love.
As a fellow “secondary progressive” diagnosee, I feel with you. All the various names and types basically mean nothing…
Nobody ever explained to me the difference between primary progressive and secondary. Something sets off the neuro folks, but the names they give mean nothing, as far as daily living-with-it is concerned. Things are worse, and there’s nothing you can do to make it better. Just like, y’know, life. Oh well… As Garrison Keillor would wish his listeners, “Courage.” In Japan, they say “Persevere.”
Nicole I am so sorry to hear you have this challenging news. Thank you so much for sharing it with all of us. You are truly an inspiration and helping us all by sharing this journey.
My thoughts are with you and I understand as I have the secondary progressive MonSter. However, I gave up on the medical advise as it began to do nothing for my slow decline – controlling stress seemed to do more. And also homeopathic remedies.
But then the only drugs that I have been given since I was diagnosed in 2000, are for the spasms – not MS drugs but epilepsy ones.
Wishing you all the very best.
I’ve been reading your blog for a few months now. Thank you for being so candid and revealing about how this disease is changing your life. I was diagnosed about two years ago and your words have brought me laughs, tears and a lot of comfort. I wish I could do the same for you. Well, not the tears, but definitely the laughs and comfort. I’m sorry about your progression. I would find it devastating, too! I’m hoping for better days ahead for you. And I am one of many people hugging you from afar.