MS Tip Jar: #2

I can be a bit of a control freak. I like things the way I like them. I make plans in advance. I’m a girl who’s an organized son-of-a-gun, and I’ve been that way from a very young age.

Insert into my life: Multiple Sclerosis, an unpredictable diagnosis which guarantees lifelong uncertainty.

It’s almost like I’m supposed to be learning something here.

Well, guess what? It has in fact been a hugely enlightening experience for me to FEEL that loss of control which came with my diagnosis, because for the first time in my life I realized I have NEVER had control. It was simply an illusion of something I thought I possessed. Think about that for a minute as it applies to your own life. It’s so true, right? A diagnosis like mine simply shines a light on that truth nugget, and because of this newfound realization I’ve naturally started morphing into someone who goes with the flow—someone who accepts bumps in the road with a big ol’ heap of peace in my heart.

It’s awesome and I like it.

Here’s an example for you. I got an MRI last week. Long story short, between my MRIs last September until now I’ve been in a relapse without treatment (even though I thought I was getting treatment… long story and totally my bad). Anyway, my doctor found out about my mix-up and wound all the silver lining right out of that cloud, letting it loose it into a new MRI order so that we can see the rate of progression with my brain lesions. In other words, I’ll have a clearer prognosis and idea of what’s actually going on with these brains in my noggin. We’ll now have a the best possible baseline to work off of, and that’s a pretty valuable thing.

Valuable indeed… but also kind of scary because these results might not tell me what control-freak-me wants to hear. What if my MS is more progressive than initially believed? Luckily go-with-the-flow-me is pretty gosh darn calm about it. In fact, I’m supposedly getting the results today, and this morning I made a conscious decision to tell God that I’m good with whatever they come back as. So that’s what I told him, and then I went to work.

I’ll end by saying this: losing my illusion of control initially felt like my prison, but it’s evolved into my freedom from worry. Not like 100% worry-free, but like 95%. I think that’s pretty good.

So que sera sera, people! Whatever will be will be, and it will be fine.

MS Tip Jar: #1

Even before I was diagnosed, but especially after, I’ve had friends express that they don’t understand how I always have my hands in so many things. In a way they are absolutely right; I am involved in a LOT. However, while I appreciate the sentiment whenever it’s shared, I know for myself that the only way I’ve been able to “do it all” is because I consciously choose to say “no” to so many other things. No one really knows how much I DON’T do.

And thus is born my MS Tip #1: “I can do it all because I DON’T do it all.”

My diagnosis has actually made this concept an easier rule-of-thumb to live by. I feel less guilt for cancelling or bailing on plans when I’m not feeling up to it, and I’ve had a better ability to delegate projects to others rather than just doing it myself exactly like I’d want it (this has always been a shortcoming of mine). Feeling able to say no to things that aren’t a priority has been a freeing thing, as has choosing to let go of some of my perfectionist tendencies. I recommend it!

If you have MS, consciously choose to dismiss all guilt of not being involved in everything you’d like to be involved in. Decide what your priorities are. Give your energy to those things, knowing and accepting that from day-to-day your energy commitments and plans may need to change. Believe that you can accomplish your goals with MS, even if it takes some adjustment. When you give yourself the patience and compassion to NOT do it all, you really CAN do it all.

The MS Tip Jar

I can’t apologize for being MIA since my last post. People. I have Multiple Sclerosis. Sometimes I can’t do stuff. I will however acknowledge my absence. Thanks for sticking around!

I wanted to announce that I’m starting a new series here on the site called the “MS Tip Jar.” You can also follow the hashtag #MSTipJar on Instagram if you’d like. Basically, these posts will range from my personal musings to practical tips for life with MS.

Keep an eye out for the first tip which is coming soon!

Mine and Thine

If you haven’t visited the “About Me” tab yet, here’s the gist:

I’m Melissa and I have Relapsing-Remitting Multiple Sclerosis (RRMS).

Wow. It feels a bit crazy to type that, because I know I’m going to publish this post where anyone in the world can find it. Until today, I’ve only told a handful of people in my life: my family, a tiny group of my friends, and my two bosses at work. This is such a hard thing to share!

That said, I feel I’m meant to share.

I’ve felt that way since I started realizing something was really wrong in my body and I wasn’t just going through a weird phase of some sort. My symptoms really kicked in full-force starting October 2017. I definitely had stuff going on for quite awhile before that time, but it didn’t seem too concerning. Each symptom presented in such a random way that nothing seemed related to each other whatsoever.

However, by December of 2017 I started getting scared, because I truly felt—I mean it was like I knew it in my bones—that something serious and major was happening with my body and health, and that I needed help. I remember feeling so scared to the point of hyperventilation multiple times, but, oddly, at the same time I felt an overwhelming sense of peace and a deep understanding that whatever was going on was “meant to be.” In fact, I remember in late December—a few days before I went to my first appointment which coincidentally was scheduled on my birthday, by the way—I fell down by the side of my bed (on purpose) and said a prayer where I told God that I would completely accept whatever the outcome of this journey would be, and that I knew this situation—whatever it was—would put me in a position to help many others whom I was meant to help. I told Him I felt complete peace about all of it even though I didn’t have any answers yet, and I meant it.

I still mean it.

I’ll share my onset symptoms and the long process to getting diagnosed in a later post, but you might start to get the picture when you see the specialists I went to during just the first five months of 2018:

  1. My Family Doctor
  2. ENT (Ear Nose Throat Specialist)
  3. Two Different Nephrologists (Kidney Specialists)
  4. Pulmonologist (Respiratory/Lung Specialist)
  5. Two Different Endocronologists (Hormones/Endocrine System Specialists)
  6. Hematologic Oncologist (Cancer Specialist Specializing in Cancers of the Blood)
  7. Sleep Specialist
  8. Hepatologist (Liver Specialist)

Those were the first eight specialties I worked with, listed in chronological order. May I just state the obvious regarding that list, though, which is that the eight specialties don’t represent eight appointments, rather they represent each area of specialization I worked with and visited many, many times. It also doesn’t account for hospital stays, lab work, or ER visits. I can specifically recall five ER visits in 2018, and the number of hospital bracelets I received last year came to a total of 12! Um, most years I get zero, thank you very much! Well, until now I suppose. On top of all that, I can’t even count or tell you how many lab and imaging tests I had. I’ll throw out a conservative number of 50. Geesh. Come on, Kathy.

Okay I don’t know why I just wrote “Come on, Kathy,” but I plan to make it a thing.

Anyway, that’s the gist of the beginnings of my path that eventually led me to the right doctors with the right specialty. Thanks, Kathy!

I’ll be sharing much, much more in posts to come, and I would love to have you share in this journey with me. And here’s the thing, folks:

  • Maybe you are a curious cat who knows nothing about MS and just wants to learn something new. Great!
  • Maybe you know someone with MS and want to get a deeper look into their experience to develop more compassion for what they’re going through. Awesome!
  • Perhaps you yourself think you may have MS and you can’t get a doctor to take you seriously no matter how hard you try. That sucks! But you’re surely welcome and I think you’re warriors!
  • Lastly, of course I can’t leave out the people who have a known diagnosis of Multiple Sclerosis, in whatever form, whatever severity, and whatever way(s) it’s affecting your life. I (literally) feel your pain, and I thank you for taking part in this journey of mine. You ROCK!

To all of you, whoever you are… because like I even know you unless you’re Kathy…, thanks again for reading. Let’s meet up here again soon!