I have MS

As you can see, I don’t look sick…

I don’t usually write too much about my personal life on my blog. I tend to keep that for my social media profiles. I have mentioned a few times while posting the last chapters of Mr. Darcy’s Compassion that I was having health problems. In early February, I posted that my MRI came back with lesions indicating MS. I’ve undergone additional testing and on February 18, I was told I definitely have MS.

I’ve decided to open up on here. People on social media are asking for more details and it’s just easier to write it in a blog post than on Facebook. Another reason I want to be transparent and share my journey is because I hope, in some small way, it can help someone else.

I’m by no means an MS expert and would suggest reading more about it on various medical websites or the National MS Society.

First of all, MS stands for Multiple Sclerosis. This means many scars. MS attacks the central nervous system. It is an immune system response. Instead of fighting infections, it destroys the protective coating over the body’s nerves, breaking it down over time. These areas are what makes up the scars. They can appear as white lesions on an MRI.

What causes MS? Doctors are not quite sure. The leading guess is that it’s a combination of factors such as stress, viruses, and environmental exposures which some people have a winning lottery number for. MS does not seem highly genetic, although your chances of having MS do increase if a family member has it.

Diagnosing MS is a several step process. For me, it was an MRI of my head with and without contrast. Then, we did a Lumbar Puncture. In order to be diagnosed with MS you must have evidence of demyelination (the nerves being destroyed) in two different areas of the central nervous system. In my case, it’s my head and my spine.

There are many kinds of medications available ranging from oral pills to injectables. They’re all insanely expensive. I’ve been offered assistance from the drug company. I’ve also already met my insurance deductible and out of pocket maximum. I am starting on the drug Techfidera. Tomorrow will actually be my first dose. I’ll let you know how that goes. I was quoted the average of $60,000 a year for MS meds from my neurologist. Mecial costs vary by drug, location, and insurance plan. My prescription was almost $8,000 for a one month supply and my copay was only $60. I’m so thankful for that. I don’t know what it will look like next year since I probably will not have met my deductible and out of pocket maximum so early in the year.

The prognosis for MS is unique to each individual. The majority of people have what is called the Relapsing/Remitting course. That means the symptoms will come and go. Some people go into remission for years. Others relapse every few months. A relapse is also called an exacerbation or a flare. It means there are new or worse symptoms that last for more than 24 hours and it’s been several months since the onset of your last batch of symptoms. While in remission, some symptoms may remain. Again, it varies by the person.

MS is not fatal.

What does my future look like? I truly don’t know. It’s impossible to know. I’m hopeful that once I start the medicine, I will see an improvement in many symptoms. It’s designed to cut the number of relapses in a year in half. Looking over my medical history (more on that later), and I think I’ve been relapsing one to two times a year. So, that would be a lovely improvement. However, there’s no way of knowing in this moment if I will one day need mobility assistance. We caught it early. My symptoms are relatively mild–although, it sure doesn’t always feel like that! I definitely plan on doing everything I can that will prolong my mobility.

For now, I plan on taking care of myself. That means working less. That means earlier bedtimes. It means resting in the middle of the day, or any other time I feel I need it. I can’t have steady plans for outings or commitments on getting so much work done. Somehow, I need to find time and energy to workout and eat better. I am still the mother to two special needs kids and their teacher. I’m aware that since I don’t know if I’ll be mobile forever that I need to make the most of today and right now with them.

I won’t let MS take over my life. However, I need to be mindful of my own limitations.

What does it mean for my readers? Well, it means kicking my 2019 plans out the window. I’m not giving up and want to accomplish a lot of them still. But, I also know that’s unrealistic now. If I wake up in remission tomorrow, I still need to guard how I use my energy. I am arranging my plans under the idea that I may not have a new publication as frequently as I had wanted.

Mr. Darcy’s Compassion releases this coming Saturday, March 2. I want to finish Tempting Scandal. I probably won’t be able to publish it and the other group of non-JAFFs this year. However, I want to finish a non-JAFF that is not assigned to me by a publisher. I just want to prove it to myself. Then, I will finish Lady Darcy’s Bluestocking Club. I had wanted to do them at the same time, but we’ll have to see if my brain can handle that. I used to write several manuscripts at once, but I’ve been experiencing cognitive and memory issues. There are times my brain is just too dull to write. I had a lot of sequels planned this year. I’ll have to see how that goes. Now, that I won’t be publishing as quickly as I planned, I might have to offset that with nonsequels if it looks like they sell better. On that, I’m sure my brain will comply. 🙂

Finally, I wanted to say thank you to my readers. Your patronage helps pay for these medical bills (ouch, there are so many!). Your loyalty and kind words bring a smile on my darkest days. If you don’t follow me on Facebook or Instagram, I’d love to see you there!

18 thoughts on “I have MS

  1. I am so sorry to hear this. *hugs* It is terrifying to have odd things going on with your body that may point to a MS diagnosis. I had a brain scan for MS two years ago but my scan came back with no brain lesions. I remembered the wait for results and telling myself I could still write, I could still function with a wheelchair. It is so unsettling because MS is so individual. I hope you keep it at bay!

    Liked by 1 person

    1. I was honestly blindsided. The neurologist thought it was a reaction to a virus when he sent for an MRI to rule out other things. I didn’t get the news in office. I had an appointment scheduled but had the flu and had to cancel. The hospital emailed me the results and I definitely panicked at first. I’ll be posting about that soon! It feels surreal sometimes. Like MS doesn’t happen to “people like me.” Yeah, I had a few weeks of bad nerve pain and stuff but it went away and I’m doing better. I’m so tired but that’s because I kind of give myself permission now. I’ve been fighting this for years and just keep trying to jump up and run again when symptoms begin to subside. So this is definitely a turning point. I have had issues with my hands and my brain being clear enough to write. I’ve had issues with speech so even if my hands hurt, dictating isn’t always a choice. I hope it doesn’t, but this could definitely end my writing my career one day.

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  2. Oh Rose, I’m so sorry you are suffering from MS and I’m praying that you are in remission more times than not. Obviously you must concentrate on your health and your family as these are the most important things.
    Your writing may have to take a back seat but hopefully you will manage to continue. I’m so looking forward to re reading Compassion when it arrives on Saturday as I really enjoyed your posts so thank you for finishing it.
    Take care of yourself and fingers crossed your treatment helps considerably.

    Liked by 1 person

    1. Apparently, I’ve been having flares for years and either pushed through or would lay low for a bit and jump back up. This time, I’m just trying to be more mindful. I definitely intend to continue to write until I physically can’t. Hopefully, it never comes to that.

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  3. Please …
    Love Yourself
    Love Your Children
    Love Your Husband

    The rest of us can wait! We look forward to your stories but we can wait!

    Feed your faith and your fears will starve to death. ~ Author Unknown

    Liked by 1 person

  4. Oh Rose, I’ve been following your terribly difficult and tortuous trials getting to this diagnosis and I just could not come up with something to say that didn’t sound trite or patronizing. It’s frightful how much the meds cost for MS. I pray this works for you. The fact that you need to take care of yourself and live for the moment with your family sounds like such an obvious thing to do. Try living it though. That’s the tough part. We get a wake-up call and commit to these ideals until we feel better, then slowly let the calls on our lives ring louder than the commitment…until the next wake-up call. And you know now that MS is gonna knock you on your hiney again at some point.

    We your readers and fans love what you give us, when you give it. I’m so glad that Mr. Darcy’s Bluestocking Club is on the future list. And if we do get it, whenever, it will be the gift worth waiting for. When we see new things coming from you, we’ll rejoice in more than just the reading but also the fact that you did it with all the responsibilities and added limitations. Each publication will be seen as more than the triumph the average author achieves with their new works…..but who the heck are those ‘average’ authors? You share so much of your life with us, we feel we know you, but for now take as much time off for yourself as you need. You’ll need to do that throughout your future. But like you said, it’s not fatal. Your faithful readership is here, plugging for you, praying for you, and happy for each blessing that comes your way.

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    1. I’ll continue to write until I can’t and hopefully it never comes to that. I just need to bear in mind my limitations and my priorities. No more staying up late to make a deadline happen thinking that I can make up for it the next day. I get what you’re saying about the triumphs of publishing. I’ve been having flares for years and didn’t know it. I have a book releasing just a few weeks after I got a diagnosis, during a terrible flare. My case is mild but even the neurologists hadn’t heard of someone losing feeling in their entire body before! I totally plan to have quite the celebration on release day! Take that MS!! Look what I did!

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  5. I feel for you Rose. I salute you for not giving to it. As you mentioned, it varies for each individual. have met some who had Ms for years and with some medications (and probably lifestyle changes, they did not have major functional deficits.

    If you want to also look at the bee sting research and also calcification of the pineal gland(which some research states has a link to MS.

    Praying for you and your health.

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    1. Thanks! Yes, I’m very thankful for insurance right now. I had hopes and goals to retire my husband and he could do something else for employment out of enjoyment but he did always bring up the insurance factor and right now I’m so thankful it never worked out.

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