Remission or a New Normal?

I saw my neurologist this morning for my routine check up. As far as she’s concerned there have been no new developments or exasterbations from the MS. I still have tingling and roaming numbness through out my body, it’s sometimes like the nerves in my skin struggle sometimes to keep up with the touch sensations, but it's nothing that overly concerns her.

As she’s asking me about how I’m doing with this or that, and I have to think back over the past couple of months, I’ve realized that more and more of the issues I’ve complained about has drifted to the background. This is good... I’m at least not focusing entirely on my symptoms and they’ve lessened significantly. However, I still do not feel the way I used to feel before this all happened. Which leads me to the question...

Is remission just a new normal?

When I first was diagnosed with MS, the idea of remission was a promise of normalcy; that my body would go back to the way it had been before all of this happened. However, with my doctor immensely pleased by my ‘progress’ and the lack of new symptoms I have to wonder if this is what they would consider to be remission. If so, then I feel gipped because I do not remotely feel anything like I did a year ago.

Honestly, I can barely remember what it felt like to be “normal”, to not have my body go through weird and random lapses in feeling, or feel exhausted just walking across a parking lot in 90º weather. It’s almost impossible not to think about MS every time I take my shot or my pills because thats the reason why I take them, but it’s not a thought that’s on my mind all of the time. 

Slowly but surely, I’m adjusting to the new me, and I can’t help but think that remission is just an acceptance of what you can’t control and change. You stop fighting and railing against it, and it starts to slip to the back of your mind more and more. While you still don’t feel like you used to before all of it happened, you’re getting used to the new ways your body feels.

Is that how you live with MS? By quietly accepting every failing, every unwanted feeling, every unwanted limitation, and every dose of medication you take? 

I suppose it makes sense. It’s useless looking back to the past and how I used to feel and how I used to live. That person is gone, she doesn’t exist anymore. Even if all of the symptoms did go away, as the idea of remission promises, I will never be who I was one year ago today.

Welcome to the New Normal. At least what constitutes normal today. Tomorrow?


Well... That's a horse of a different color.

To Tell or Not to Tell

To tell or not to tell, that is the question.

As I am in the process of finding a job, I have to think about how MS is going to fit into that part of my life. The question if disclosure is a big question when it comes to if and when I tell my new employers and how that will affect my on the job.

A part of me is inclined to be honest up front because it feels almost dishonest if I’m not. MS can have an impact on my job performance. There could be days where I am so fatigued I could barely get out of bed, I have more doctor appointments that an average person, and there is the potential for other issues. Not saying anything means that I have to be vague about absences, sick days, leaving early, and that could reflect negatively on my work ethic. I could wait to get hired and then say something, but it feels like some sort of bait and switch, the company hired me with one expectation and then learns that there may be limitations on my end. Once hired, I could not be let go because I had MS so a company could feel stuck.

However...

Being upfront can definitely hurt me ever getting a job. I still cannot be discriminated against, but it is much easier for a company to find other reasons not to hire me even if I were more than qualified.

Things are getting better MS wise, and it’s getting easier to almost forget that it’s there. The chances are, there would be no issues MS wise when I start working again, but I’m anxious. The only job I had since my diagnosis was with the school and it ended with me in the hospital. That’s not a positive experience to draw from, and I’m worried that it will happen again.

So, to tell or not to tell... that is the question.

World MS Day

II suppose I should spend the last 30 minutes of today to comment about World MS Day.

Today is World MS Day, one day where people should stop and give consideration to all of us who suffer from MS.

Aaaaaaaaand.... the moment passed.

I won’t go on about how it’s ludicrous to devote one day to raising awareness about anything, breast cancer, diabetes, MS, whatever... One day where other people stop and think about a disease they know nothing about but are glad they don’t have. I wish I could spend one day thinking hard about my disease and then push it aside and it isn’t there anymore. It’s up there with Mother’s Day or Father’s Day... One day out of the year to appreciate your parents who’ve spent the other 364 days appreciating and caring for you. 

Where is that fair?

This time last year, I was just starting summer break with the kids. I had no idea that there was a World MS Day, and if I did, I didn’t give it much thought; I was too busy playing with my boys and enjoying the break from work. Now the idea of a World MS Day has a whole different meaning, but honestly, I still would have been just as fine not knowing a thing about it while I prepared for another summer hanging with the guys.

So, this is my moment where I give some thought and consideration about this disease that is wreaking havoc on my life...

Aaaaaaaand, we’re done.

Wanted: One brain, it’s grey, kinda wrinkly. I must have left it somewhere...

I am seriously starting to lose my mind, and not in the my kids are diving me crazy, I’ve got a boat load of work to do and not enough time to do it in, losing my mind. I seem to be losing cognitive functioning.

For example:

I’ve been saying wrong things with out knowing that I’m saying things incorrectly. I’ve told the kids to rinse off their dishes and put them in the microwave. I ordered a hot ‘n sour soup in stead of an egg drop soup at or favorite Asian restaurant on my birthday; I hate hot ‘n sour soup.

When I write, everything looks normal, my spelling is correct, no typos, but when I go back to something I previously wrote, it will be full of typos, wrong words, etc.

Today, I had an appointment at 10:30 in the morning. I finished a few things around the house, dishes, laundry, etc. Went up to dress, I did my hair, make up, and when I went downstairs and looked at the clock it was only a little past 10. I had plenty of time before I had to leave. So, I balanced my checkbook, contacted a potential client, packed my bag and left at 10:15. I got to my appointment, I sat in the waiting room, opened my book and started reading. My cell phone starts going off, but I don’t recognize the number so let it go to voicemail. Curious, I check to see who called and it was my doctor saying that we need to reschedule because when he came out to get me I wasn’t in the waiting room. Confused, I checked the time and it was 11! I thought I’d gotten to the appointment on time, but when I checked the call log from the call I made before leaving the house, and it was at 10:34. Somehow I looked at the clock, saw 10:15 and when I got to the office I saw that I was indeed on time.

I’d spent the whole morning thinking that I was on schedule and yet time had completely gotten away from me and I had no idea that it had; which really freaks me out.

I have a test, I scheduled a couple of weeks ago, to have a neuropsychometric exam. For awhile I’ve been having issues finding words and losing words, plus now using wrong words, so my neurologist wanted me to have this test that should determine if it’s my medication that’s causing the issue, or if it’s apart of the MS.

That’s right folks. Not only can the MS cripple me physically, it can also cripple me cognitively. Apparently it has something to do with the lesions in my brain, how many I have, where they are located, but cognitive loss is not a good sign. According to my reading, people who’ve had MS for years will start to have cognitive impact as the condition slowly progresses. It’s scary to think that after less than a year, I’m having cognitive issues.

I really hope that it’s the medication because then there’s something that could be done. First of all, I quit what’s causing the problem, and that’s easy because I don’t think it works anyway. I still have pain, I still have neuropathy, and its all getting worse.

Did I fail to mention that?

Yes, my symptoms are not only still present, they are worsening. Along with the worsening symptoms, the cognitive issues seem to be worsening too, especially if I add losing time to the list of brain issues I’m having.

If it’s medication driven, we quit the meds I’m taking and possibly try new things. If it’s MS, the damage is irreversible and well I don’t really want to go there at the moment...

They say first steps are the hardest... But sometimes you just have to jump in.

On Sunday I got back on my bike for the first time since I was diagnosed. Hobbes was driving me nuts and I figured the best way to appease him was to take him outside to ride bikes. I wasn’t sure how I would do, but I was willing to give it a shot. We ended up taking a bike tour around the neighborhood with Hobbes showing me where he likes to bike and where his friends live.

It felt good to bike again, and we had a lot of fun.

Today it’s warm and sunny out and I decided that I wanted to take a walk. I packed my iPod, sketch book, some pencils, writing journal, and a book. I went out, taking it slow, and after awhile I sat down to sketch. It was so great being outside in the sun, listening to music, and drawing. It almost felt like none of this MS stuff had happened.

I’ve come to the conclusion that I’m tired of talking about MS. 

I’m tired of talking about my health. Somedays are good, somedays are bad, on the good days I’m out and about while on the bad days I’m hibernating. When I feel good, I don’t like being reminded that I have something not right with me. Even coming off a bad episode, when I feel good I want to put the bad episodes behind me. 

I don’t want to look in the mirror anymore and see MS, and I don’t want people to only see that part of me as well. It’s like the nondescript music that plays in a department store; it’s there, you hear it, but it blends into the background and you forget that it’s even playing. I want MS to fade into the background; it’s there, I know it, but I want it to blend into my life. 

This song has been overplayed, and it’s has long worn out it’s interest. It’s time for MS to become the muzak in my life. 

This is the picture I sketched while on my walk.