F You Fatigue

It comes in waves. I can be up and about, then it hits me and I feel like I could fall asleep where I stand.

I haven't felt fatigue like this since my first trimester of pregnancy. But at least then I knew there was an end in sight.

Naps aren't 20 minutes but two hour affairs where I am as fast asleep as I am at night. If I don't nap, then you will find me passed out on the couch before 9 pm. On those days that I power through the fatigue, I'm in bed not long after the kids.

Some days, I feel like I could go back to bed after only being awake an hour. I'm impervious to coffee.

So if you invite me out for an evening on the town and I decline, it has nothing to do with you, but with the sleep my body so desperately needs. Those nights out mean days of short temper and exhaustion so I have to choose them wisely, especially since my day could involve chasing kids. I save my energy for them. They deserve the best of me, not the worst.

F You Fatigue

Would you hire someone with MS?

Someone pointed out to me, after I shared that I am blogging about my diagnosis, that it could work against me with future employers. Though it is illegal for them to ask any questions about illnesses etc., a quick Google search or click from my LinkedIn profile would point them towards this blog and my diagnosis. They could discriminate against me during the hiring process.

First question: Would I want to work with a company that wouldn't hire me because of my illness? HELLS NO. So I'd be thankful that they discriminated against me and saved me from learning about their true nature on the job.

Second question: Do you know me? If you have worked with or for me, you would know that I hold myself to the highest standard, usually above what any employer would expect. I am my own toughest critic and loudest cheerleader. This blog also shows that in the face of adversity, I tackle it head on.

So am I worried about future employment? No. Nor should I be. Any employer would be lucky to have me.

The Three Rs: Relapse, Recurrence and Rest

It's been three months since I've started my drug regimen and I have good news to report: no new lesions on my brain since between my MRI in February and my MRI in June. This is great as it means that since my two episodes, there doesn't seem to have been any progression in the disease. Hopefully now that I'm in treatment, we'll continue on this path.

There were a few new developments.

My most recent MRI included my spine - to benchmark as lesions can also develop there. As I anticipated, I have two lesions on my spine and one on my thoracic spine. How could I anticipate this? Ever since my leg numbness in the Fall, I've been extremely tight in my lower right back. Chiropractic and physiotherapy sessions along with yoga/pilates have helped loosen it a bit, but it's never fully released. So now I know.

I also was getting lightning bolt type pains in my left temple. I noticed it here and there, but tuned into my body one day and noticed twinges or bolts of varying severity about every 45 minutes. Think of a contraction in your brain. Troubling.

Luckily, I had my follow-up with my neurologist who informed me that it could be a recurrence of my optic neuritis (which occurred in my left eye). My eyesight was a little blurrier so entirely possible that it had flared up. More troubling is that after I left her office, I proceeded to get these pains in my right temple. In rapid succession. Stronger. More painful. That could mean a relapse.

What to do? I began three days of steroid infusions. We have attacked each obstacle as we go on this journey and I wasn't about to sit back and let it ravage my eyesight again. Thankfully, the bolts subsided and are far less frequent and painful.

However, it did lead me to question why this flare-up happened.

It has been a particularly stressful time both personally and professionally. Without going into details, I clearly wasn't handling the stress the way that I should. Was it the most stressful time that I've experienced in my life? No - I've handled more so I pushed myself through it.

I've come to realize I can't do that anymore. Every day, I am teetering on the edge of an episode. I don't know what might set it off, or how it will present itself. But I do know that there are things I NEED to do for myself to avoid going over the edge. Exercise. Nutrition and proper meals. REST.

I also need to reset my priorities and the standards to which I hold myself. I need to say no to some things that I may like to do, but could mean I sacrifice more of myself than I should. I need to give myself permission to do that and not have a FOMO.

So with that in mind, I'm off to catch a little snooze while Lily naps. And I won't feel guilty about it.

Another step forward!

Only two weeks have passed since we visited the MS Clinic, but I'm happy to say we continue to move forward.

I received the call yesterday from our selected treatment option's patient assistance program. If all goes well, I will receive the drug by end of week and start weaning it into my daily routine. This is amazing news.

Why aren't we mentioning what drug I will be taking? There are a few reasons:

1) This drug isn't an option for everyone. Several folks that know someone with RRMS are not on this particular drug for various reasons.
2) I do not want this blog to be seen to promote one treatment option over another.
3) I have yet to begin taking it. I may have a reaction, I may not stay on it, who knows?
4) This may not be the only drug I try.

Needless to say, we are thankful that we continue to forge ahead in our fight against MS. This drug won't reverse the effects but it hopes to prevent further relapses which can cause irreparable damage to my body.

Yay!

It's been a while...

It's hard to believe that I stepped away from this blog for more than two years. Blogs are hard work and one thing I wholeheartedly believe is post when you have something to say, not just because.

Many things have happened in the last couple of years. My business is thriving. We added another member of our family (#HappyLily). But the most recent change prompted me to return to the keyboard.

The original title of this blog was Misadventures of a Modern Mom. I've updated it to MSadventures of a Modern Mom. This is not by accident.

I have been diagnosed with Relapsing-Remitting MS (Multiple Sclerosis). It is the very early stages of the disease.

In the fall, I experienced numbness in my leg. At the time, all signs seemed to point to a pinched nerve, even though it persisted for several weeks. A little physiotherapy and it returned to normal.

Fast forward to January. After a routine migraine, I had what I thought was a persistent aura. I slowly went blind in my left eye over a couple of days and eventually was diagnosed with optic neuritis. This was a significant symptom that led to blood work and an MRI. The results of the MRI were clear. I have MS.

Thanks to the help of an amazingly supportive husband, some awesome friends and family as well as a family doctor who truly is an advocate for my care, I visited the MS Clinic at St. Michael's Hospital yesterday in Toronto to receive the official diagnosis and begin the path to treatment.

So how am I doing? This seems to be the million dollar question.

I am happy. Truly happy. I am happy to live in a city that can provide world class health care. I am happy to have a phenomenal support system around me. I am happy that the challenges I have faced up until this point in my life have given me the mental fortitude to keep a positive outlook and continue moving forward. I am happy that we identified it early enough to begin treatment that will likely see me live a normal and productive life for many years to come.

I am happy.

Breathing Room

This fall was very busy. Business was booming which kept me bouncing between projects and tasks. I thrive on being busy but I'm thankful now for some breathing room.

The only thing that happens during this lull is that the things I have pushed to the back of my mind (this blog included) stare at me, flashing like a big red light that I can't ignore anymore. I feel guilty.

I haven't exercised as much as I would like due to an ankle sprain (almost completely healed now, thank you very much).

My office looks like a paper explosion. I need to file things away.

I have a pile of receipts that I need to get into my accounting system for tax season. It now feels overwhelming.

I've neglected every day life. I have to remind myself that it's okay. All of these things can wait till tomorrow.

I'll let Future Jessica worry about it.

Baby Boom Bitterness

This is a difficult post to write because I know that several friends, some close and some far away, will think that I'm writing specifically about them. That's not the case. They are all fantastic and I wish them only love and happiness.

It seems that in the last couple of months, many friends have announced they are expecting their second (or third or fourth) child. This is amazing news for them.

However, it's hard to hear that news. It reminds me that we haven't yet been blessed with our next child. We almost were, but then it was gone.

This feeling sucks. I feel guilty for being bitter that we haven't gotten pregnant again. I feel guilty for being angry with life that it 'seems' to come so easily for others. I know that it likely isn't the case - I may just not be privy to their struggles. I feel guilty for resenting their happiness.

It is not any one individual. It's just a collective baby boom that seems to be happening around us that we wish we were participating in.

So with each heartfelt congratulations goes a twinge of pain and guilt. I only hope that we can soon share our own news and that pain and guilt go away.