Curveball

Retro 51 Homerun

It’s been a weird week/month/year. Since the beginning of April, I’ve been experiencing strange and spreading numbness in my right leg and odd sensations (like walking on electrified sandpaper) in both feet. At first the sensations were faint and I blamed them on the fact that I’d lifted a number of 5-gallon cans of solvent at work. Heck, so did the doctor for awhile. But then the odd feelings intensified and really took root, and I pretty much knew something bigger was up.

I won’t go into all of the details, but let’s just say that the last five weeks have been filled with battles for appointments that weren’t two months away, fear and tears, more MRIs than seems safe, good news that turned out to be wrong (“It’s a pinched nerve in your back.”), and ultimately, a fairly sure diagnosis. Last Thursday I learned that it’s quite certain that I have MS.

I have to say that I sort of saw it coming as the days passed and symptoms stayed. But still, it’s a lot to take in.

I’m in the process of getting a referral to an out-of-town MS Clinic and I really can’t wait to get there so that I can finally feel like I’m taking action while, hopefully, beating back my symptoms a bit.

As I process this “new normal” (a hackneyed expression, but one that totally fits), I find myself thinking thoughts that are totally cliché and belong on bad bumper stickers. Stuff like:

  • The only moment we really have is RIGHT NOW. Don’t fret about the future. (God, I suck at this.)
  • Family and friends (and pets) are what’s most important. This becomes crystal clear very quickly.
  • All of that stuff you’re worrying about probably isn’t worth it. (I’m sure I’ll continue to do it, anyway.)
  • You have to take care of you.
  • Don’t sweat the small stuff…or even the big stuff. Enjoy the sun, a walk, a movie, a letter, a book, lunch with a friend.

Like I said, trite stuff that I knew but didn’t really KNOW until now.

My biggest fear is that I’ll lose the ability to write. My pens and pen friends and letters and journaling (sporadic as it is) have become such a big part of my life—a place that I draw calmness and strength from—that I worry (see? I can’t stop) that MS will affect that.

BUT, my sister (who’s always been a positive-thinker), sent the following words to me, “Sometimes in life we are thrown a curve ball. Not realizing how strong we are, that “ball” can, and will, be knocked out of the f–ing park!”

Maybe it’s fitting that my Retro 51 “Homerun” Tornado arrived during all of this. Maybe it’s a sign.

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81 thoughts on “Curveball

  1. Wow. This really is a curveball and a spitball and a turdball. I am sure this is such a devastating and frightening time. I’ve been through all that testing, and never came out with a definitive diagnosis. The waiting and the worrying are so horrible. At least now, with the diagnosis you can work with the doctors to mitigate the symptoms. But, man, how scary. I hope that you never have to give up writing or fountain pens. I understand that worry, and it’s real, and it’s okay to worry, to be afraid. I just hope that you are surrounded by friends and family who can hold you up when you’re scared and cheer you on as you face the hurdles.

    • It IS a turdball!! You certainly know of which I speak. The waiting is pure torture. But, so many good wishes, from near and far, are helping to counteract the negative times.

  2. Mary, I’m so sorry to hear your diagnosis. I don’t know much about MS, but I do know I enjoy and look forward your posts a great deal, and hope that MS does not cause you a lot of pain or debilitation. I wish you strength and optimism, and please know that you have many people in your life wishing you the best – even some you’ve never met!

  3. I don’t know what else to say other than I’m so sorry and extremely sad to hear this. I know that you have the entire pen community supporting you and always remember you have many friends (Internet and real-life) in the community

  4. My thoughts are with you and I wish you the best possible outcome as you look for specialists and treatment. Thank you for your wonderful reviews and positive presence in the pen community.

  5. I am so sorry. I am happy to hear that you have family and friends and pets who are there for you. I sure hope the clinic can help you find a way to keep the disease in check.

  6. I’m sorry to hear about the rough patch you are going through. Even though we don’t know each other, I’ve enjoyed your blog and wanted to wish you the best. While it seems very scary, and rightfully so, there is certainly hope that you can keep the symptoms from becoming worse. I have a close friend who received the same diagnosis at a very young age, and through treatment has been able to not only prevent the symptoms from worsening, has even been able to make many of the symptoms improve. Stay diligent in continuing to seek out and ask for different treatments, even new / experimental / or not well known ones. You may have to do a lot of research and even help to educate your physicians who may not be able to keep up with the cutting edge of every disease treatment that they encounter in their patients. If you have a great doctor to partner with, you will find success in keeping this illness at bay!

    • Thanks for your words, Ryan. I’m currently trying to navigate the medical system and hitting some walls, but I hope to eventually end up in the right place with the right doctor. It sure does take endurance!

  7. Oh Mary! So sorry you have to deal with this. You have a lot of well wishers out here in internet land.

    I will be praying for you, and I look forward to the writing I’m confident you will share with us! Attitude is everything!

  8. So sorry to read your latest news, my best wishes and I’m sure that of the whole pen community are with you, keep positive!

  9. Mary,

    We are very sorry to hear this news as it must be very disheartening but it sounds like you have a fighter’s spirit and will meet this new challenge head on.

    We hope the Homerun is a sign as you wrote and you knock it out of the park. Our prayers and thoughts are with you.
    -Retro 51 Team

  10. Dear Mary, all the best wishes from us. You are such a kind and warm-hearted person, and you definitely have the positive attitude to fight back. We hope your treatment is effective and that you can continue to bless everyone with your beautiful writing for years to come. We are here for you!

  11. You’ll be in my thoughts. And, for what it’s worth, I’d take a letter from you in any format, even if it was typed or recorded on a microcassette or something. 🙂

  12. Very sorry to hear your unfortunate news, Mary. I wish the very best for you in both your prognosis and and any treatments and hope you will continue writing your Pen Cup blog and keep your followers in the loop, so to speak. I have heard that MS sometimes goes into long periods of remission, so maybe that will happen with you. I mean, why not? Keep your spirits up and hope for the best… we are all sending positive vibes your way.

  13. This is not the news one wants to hear. As one who loves paper and the physicality of writing, I can imagine the distress around what is ahead for one of your joys in life. Let us hope a loss of your ability to enjoy pen and paper never happens or is a long time coming – if it must. Specialty clinics, remission, research, and your own fine spirit bode well for you.

    • Thank you! I’m so anxious to get the ball rolling. The medical system is not for the faint-hearted. Trying to navigate!

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  15. I am so sorry to hear this diagnosis and hope that you will be able to find a path of treatment that keeps you writing and blogging and doing all the things you love. We’re here for you, whatever you need.

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  17. Many healing thoughts your way; so many good treatments these days that allow patients good quality of life. We’re here to support you!

  18. I’m sorry to hear about this, but I don’t think you should fret too much in the mean time (I know you will as we all do!). I have family friends who have been diagnosed with MS who have had years without a progression in symptoms, so I don’t think it’s time to put away the pens!

  19. Mary, we are sorry to hear about this recent diagnosis. Your positive attitude in this reflective post is encouraging to many. You are a valued member of the fountain pen blogging community and our thoughts are with you! -The Goulet Pen Company Team

  20. Dear Mary, I’m so saddened to hear about this diagnosis. Your blog is one that I’ve enjoyed following this past year and I have you to thank for my Levenger paper obsession! Your positive/can-do attitude will transcend any challenges that come your way. Humor is the best medicine, so surround yourself with those will make you laugh! You’re in my thoughts and prayers! {HUGS}

  21. Dear Mary,
    I’m so sorry to read this. Having faced life’s challenges lately I realize how short it can be or how much it can change in a very short time. I hope you’ll find the strength in your self and support from your loved ones to face this challenge.
    All the best
    Frank

  22. Mary, I have enjoyed reading your blog for some time now. Today is a greater age, and the treatments for MS are far better than they have been in the past. My high school friend from high school, has had MS since her 20’s and is on an injectable medication that has prevented it from progressing. She is a graphic designer, and is still able to do all that she needs to and write/draw just like before. Find someone who knows MS and has experience treating it. Like pens and ink, there are good combos and bad ones. Same goes for doctors, find the perfect fit – we will, no doubt, be reading your blog for many, many more years to come!
    Brandon
    Kansas City

  23. I am sorry to hear you have MS. I have a friend with it and she was diagnosed at 50. She is now 70. She has bad days, but also months if remission where she can walk normally and be symptom free. She has learnt to manage the days when she has symptoms. I hope you get good doctors and effective treatment.

    • Thanks, Clare! I can’t wait to get to my first appointment with a specialist to get the ball rolling. The waiting is so tough!

      • Yes, it is. My partner took 11 months to have prostate cancer diagnosed. He was 81, yet lived until he was 90, despite it having metastatic cancer in the hip.
        My friend, who has MS is still attending museum lectures, making notes and helping her husband in research. I am sure once you get to see a specialist and start treatment you will leave off worrying and concentrate on keeping yourself healthy. Anika, who is Dutch but married to an Englishman, says that the thing to do is watch out that you eat fresh, good quality food whenever you can, and take as much rest as you need. Over tiredness is the enemy, she says. Good luck with your first meeting with the specialist.

        Clare

  24. Dear Mary,

    I am sorry to hear of your MS diagnosis, but I have perfect faith in your ability to tackle the complicated healthcare system/treatments with the same integrity with which you review pens, paper, and ink–attention to detail and an uncompromising spirit. My thoughts are with you and your loved ones.

    • Thanks, Kim! I am finding the initial steps to take some perseverance! Finally got an appointment with a specialist in a couple of weeks. The medical system is not for the faint-hearted!

  25. This hurts. In your blogposts, your personality shines through, and that is one of the warmest kind. I was sorry about your pets, but this is different stuff. Hang in there.

    • Thanks, Hans. I’m starting to navigate my way through this new journey. Takes some guts to force your way into the medical system. I’ll keep pushing! Hoping for the best.

  26. My father has MS (has since he was in his early 30’s I think?), as well as 2 of my aunts. I think the key thing with managing a chronic condition is to take it one day at a time and realize that just because yesterday was bad, today doesn’t have to be, or that if yesterday was good, that doesn’t mean today will be. It can be really frustrating, but there are huge advancements being made in medicine everyday and I’ve heard that a lot of the treatments available are more effective for women, so at least you might have a leg up there.

    Another important thing is to not be afraid to take your treatment into your own hands. Keep a record of how you feel each day, what things seem to trigger problems, etc. If you are proactive it will be so much easier to recognize trends and find the right treatments for you. My father has been ~90% gluten free for the past year or so and says that it has greatly improved his symptoms, yet doctors aren’t really suggesting that as a thing to do yet. You never know what might help (or hurt, yes) until you try it and see.

    • Thanks, Andi. Your advice is very helpful. I’ve finally secured an appointment with an MS Specialist group…the victory of the week! I’m also reading up on nutritional aspects…basically paleo with specific groups of vegetables and fruit. I’m reading Wahls Protocol…a book that lays out the eating plan for autoimmune conditions. Starting on this new journey!

  27. So sorry to hear about this. BUT – my husband was diagnosed with MS 11 years ago and got on treatment right away. He has had only one minor exacerbation since, and other than remembering to take the medication, and being attentive to getting enough rest (not a bad idea for anyone!) the MS has had little effect on his day to day life. Looking at him, or even being with him for long stretches, you would not have any idea he has a chronic illness. The first year after diagnosis was tough for him, but he found being proactive helped him come to terms with it. There is some very significant research being done, and there is so much more choice in meds than there was even 10 years ago. You will find the right treatment for you, and you will do great. Don’t lose heart – it is a big blow to be diagnosed, but you will find out that it will not be the end of life as you know it. Wishing you the best.

    • Thank you for this, Cathy. It’s so great to hear from folks doing well and managing their condition. Incredibly helpful!

  28. Mary , my thoughts and prayers are with you and your family I know how those curveball can be. You CAN knock the cover off of them. I’m proof that a diagnosis is not necessarily a sentence carved in stone. Hang in there, lady!

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  30. I know I’m late to this, but just wanted to send you lots of good thoughts and encouragement! I’m sure you’ll definitely “knock it out the park” 🙂 Let me know if you need anything!

    • Hi, Joe! It’s still early in the journey so no worries! Thanks for sending encouragement. So appreciated.

  31. I just found your blog and read your post on your recent medical discoveries. Thanks for sharing. Prayers and happy thoughts to you and yours and I look forward to reading your upcoming posts.

  32. Catching up on the blogs I read and I’m so sorry to hear this news! I’ll be thinking of you and praying for you. Your sister is right! You can knock this curveball out of the park!

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