Landslide

I read a lot on MS forums. I tried to write about my experiences a few times, but face it – if you have something to say about MS somebody has probably already said it more eloquently than I. But I had the strangest experience yesterday and I would like to acknowledge that it happened.

Rubik’s Cube of nonsense

I have been on Ocrevus for a year and it was MRI time and the doctor’s visit. I am at the point in my life where my age related issues are overlapping my MS issues in a Rubik’s Cube of nonsense. Bone pain from severe arthritis or is it nerve pain from MS? The medical community seems to enjoy playing ‘hot potato’ with my pain by attributing it to whatever specialty they are not. Does the spasticity get worse because of sciatica or does the sciatica aggravate the spasticity? Yes. My personal life is stable and am lucky to have a spouse who cares, but we fight constantly and when it gets heated he dismisses the the discussion as related to my brain being screwed up from having MS so I don’t know what I’m talking about, which angers me further. Plus, my next birthday is the big 6-0 and to be honest I never thought much about being an old lady with MS, but guess who is an old lady with MS?

In the silence, I hear Stevie Nicks

Anyway, I get set up and go to the tube, and the tech gives me headphones to listen to music while getting the test done. So as I lay on my back I start to hurt real bad, my bones aching and trigger points in my shoulder start hurting, and then the spasm in my leg starts to seize. I am trying to rise above this mentally to get me through the test and I realize there is no music. I thought about saying something but I didn’t bother.

The machine is rat tat tatting away and I start to get overwhelmed by it all. I hear a little static through the headphones and say to myself oh, good, the music is on. Well, as the machine stops the noise as it sets up for the next scan I hear Fleetwood Mac and the song Landslide and in the silence I hear Stevie Nicks clear as a bell sing the verse: Can I sail through the ocean’s changing tides / can I live through the seasons of my life?

And the tears start coming because that’s where I am in my life: Can I do this? Will I be able to do this? WTF?

What’s wrong

They pull out of the tube to inject the contrast, and the tech looks at my tear stained face and asked what’s wrong, and I just said, “Fleetwood Mac,” and she gives me a box of tissues. I then endure three needle sticks until they can find a vein to inject the contrast. Back into the tube I go to finish the test, all the while wondering: will a landslide bring me down?

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Comments

View Comments (7)
  • Courtney Santos
    2 months ago

    That was lovely.

  • nanarides62
    3 months ago

    Hi Cindy. Welcome to my world LOL. I should change my user name because I am now 63 and I haven’t ridden my Harley in a long time due to fatigue and cognitive issues.

    I am a late bloomer and was officially diagnosed this week after years of symptoms, 2 prior brain scans with “nonspecific changes,” a negative spine MRI, and a negative lumbar puncture. The report for my MRI of the brain this week, done at a different facility, actually contained the words “multiple sclerosis” and “MS plaques.”

    My neuro/MS specialist ruled out rheumatologic issues, Lyme disease, etc. I do have scoliosis and pain associated with that but we found my bladder issues were not associated with any nerve damage from the scoliosis. In fact, it was my urologist who a year ago suggested my slow stream and incomplete emptying could be due to MS.

    I also have an intention tremor, depression/anxiety, “cog fog,” FATIGUE, chronic pain, restless legs, cramping, etc.

    My husband divorced me 8 years ago and I lost my medical transcriptionist job of 20 years one year ago due to a layoff, just when my symptoms got really bad. Two years too young for Medicare but thankfully I am on Medicaid now and I am receiving topnotch care through the University of Washington. It’s really hard trying to reinvent myself at this age to have an income but am working with a rehab specialist at the UW MS clinic and am working 30 hours a week as a greeter at Walmart. Even that is mentally and physically challenging and wipes me out but I’m dealing with it one day at a time –sometimes even one minute at a time.

    At least I am out of the limbo of not knowing what type of autoimmune disease has been attacking me and forever changing my life as I knew it, on top of the “normal” effects of aging. I am also working with a “talk doc” weekly and learning to deal with stress better and am truly grateful for a lot of blessings in my life.

    Sorry this post is so long but I tend to ramble more the older I get!

  • nanarides62
    3 months ago

    Update: I just recvd a note from my doctor who said the radiologist who read my latest MRI mistakenly called the findings “MS plaques” because he thought I have MS, but apparently I do not! I’m so confused. Still in limbo land, I guess, as to what ails me.

  • Gemma Kennedy
    3 months ago

    This is beautiful and I felt a lot reading this. It’s difficult when you love you partner and they love you but it’s easy to use your MS as the problem, I start to question if my partner unintentionally uses my memory when it wasn’t my fault. But I don’t remember so I can’t say much.
    You sound like a very lovely woman which a big heart and soul ❤️

  • lcal
    1 month ago

    although it’s not funny, in laughing at I start to question if my partner unintentionally uses my memory when it wasn’t my fault. But I don’t remember so I can’t say much”, because I do and think this same thing all the time. It definitely works in others benefit, but at the same time not staying upset over things because ya forgot them is a great stress eliminator.
    Lisa

  • meghmacn
    3 months ago

    So much yes to this! I completely get where you were and how you got there, and how Landslide tipped it off. Those moments of clarity are both beautiful and excruciating.

  • Erin Rush moderator
    3 months ago

    I am so glad you finally wrote this down and shared with us, ASAPcindy! What a beautiful, evocative description you offered!

    I truly believe every member voice matters here, because, as I am sure you know, every person experiences MS uniquely. While there is some definite commonality in symptoms, each person’s experience is uniquely their own.

    And I think the big questions you are asking yourself are very normal and appropriate. I think many baby boomers are reaching a point where they are asking, “What’s next?” and “Is this all there is to life?”. I think it’s because you are starting a new chapter in life and with every new chapter, I think we all ask those types of questions. Add MS to the mix, and well, those questions become even weightier. And, who better to be the soundtrack to those questions than Miss Stevie Nicks?

    Thank you again for sharing! I am so glad you did.

    Best, Erin, MultipleSclerosis.net Team Member.

    I hope you are able to get some answers and some pain relief options very soon.

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