Thursday, June 5, 2014

Carnival of MS Bloggers #156

Welcome to the Carnival of MS Bloggers, a monthly compendium of thoughts and experiences shared by those living with multiple sclerosis.

by Jamia at MS is a Mother...

As mothers, I think that we are given the permission from the Universe to lie to our kids. And not really big lies, but little lies that help smooth out tough conversations.

Lies like, “This is going to hurt me more than it will hurt you” as we rip band-aids off of “boo-boos”. Little lies like, “We will be there before you know it…” knowing full well that the car ride to the amusement park is at least an hour away and there is a traffic jam.

So as I continue to embark on my motherhood journey, I too, have started telling these same little lies to smooth out difficult questions that my four year old is fond of asking me.

But one question that caught me off guard that I didn’t have a little lie to tell was this: “Mommy why do you get tired all the time and why do you walk funny sometimes?”

The dreaded questions that I was hoping not to have to answer for at least another year were already being asked! As a mother living with relapsing multiple sclerosis, I try very hard to mask those tougher days by announcing to the family that “Today, Mommy is moving like a robot “which means that I will be plodding around the house shifting my weight from side-to-side because my legs are agitated by the effects of Multiple Sclerosis leaving lesions on my spinal cord that at times will affect my gait and balance. Being “Mommy robot” sounds a bit more fun and allows us to keep the situation light. Sometime I do walk funny and my gait is off do to my MS, and becoming a “Mommy Robot” puts things into perspective.

But on this day I decided that not every MS manifestation I could have could be attributed to “Mommy Robot”. So as he waits for an answer, I get the perfect way to explain multiple sclerosis in a way that my two and four year old will understand.

So I casually say, “Jacks when you fall and hurt yourself, what do you say?” Jacks looks at me a bit annoyed because this is NOT the answer to his question. But being a good little boy he says, “Ouchy.”

“Good” I say. “And what if you fell and hurt yourself all over, what would you say then?”

Jacks cocks his head to one side and says very confidently, “Ouchies, Mommy. I would have “ouchies” all over the place!” He spreads his arms as far apart as he can.

So I take a breath and continue, “So guess what Jacks? Mommy has “ouchies” too.” I say matter-of –factly as he runs to me looking all over my arms and legs.

“Where mommy? Where are your ouchies? I don’t see them?” His big brown eyes filled with a bit of concern that almost makes me want to cry. But I keep going.

“Well Mommy has “ouchies on the inside” of my body where you and I can’t see them. That is why I get tired and walk funny sometimes. Mommy’s “ouchies on the inside” are “acting up.”

I stop talking and look at him. He sits silently and I figure that this was a bit too abstract and maybe I should have kept up with the “Mommy robot” story.

A little lie to smooth out a difficult conversation.

So then this is when I knew that as much as we mothers like to shield our children from uncertain truths, they show us that they can handle it. Jacks looks up at me and starts planting kisses all over my face and arms and legs. I start laughing at this sudden display of affection. And before I knew it my little Dylan has joined the party.

“Jacks, what are you guys doing? “ I say as I laugh because their kisses are tickling me. And the two of them have now knocked me over and we are all on the floor.

“Kissing all of your “ouchies” away, Mommy. Feel better now?” he asks as Dylan echoes my answer with some of his indiscernible toddler ramblings.

And at that moment I did feel better. Much better.

Telling the truth can also smooth out difficult conversations. Lesson learned. Another stamp in my passport: MOTHERHOOD.

This concludes the 156th edition of the Carnival.  The next Carnival of MS Bloggers will be hosted here on July 3, 2014. Please remember to submit a post (via email) from your blog of which you are particularly proud, or which you simply want to share, by noon on Tuesday, July 1, 2014.

Thursday, May 1, 2014

Carnival of MS Bloggers #155

Welcome to the Carnival of MS Bloggers, a monthly compendium of thoughts and experiences shared by those living with multiple sclerosis.

by Lori at A Girl from MS and A Boy with MS

I'm sorry is a phrase that is either really easy to say or really hard to say. Sometimes it is used lightly, and sometimes it is used in some pretty intense situations. In marriage and really in life in general, the art of saying I'm sorry and what it means is actually really complex.

The first words Josh said to me after his diagnosis were "I'm Sorry." I am pretty sure I looked at Josh like he was an idiot. Why was he apologizing? Who says they are sorry for being sick? Are you kidding me? Being diagnosed with MS is something that is totally out of a person's control. Thinking about it now, I'm sorry is a little bit ironic. The things I really need Josh to say I'm sorry for are things like...
  • Sorry for leaving the toilet seat up, and the fact that you fall in the toilet at least once a week as a result of this.
  • Sorry for never unpacking my bags after business trips.
  • Sorry for falling asleep with a glass of red wine in my hand and waking up startled resulting in me drenching you with red wine at 3 in the morning. (True Story... Don't you feel sorry for me?)
  • Sorry for being grouchy when I wake up.
  • Sorry for leaving my work stuff scattered on the table.
  • Sorry for leaving empty glasses on the nightstand.
Even after reading this list, the things I want him to say he is sorry for are pretty pathetic. They are such minor things in life. AND truthfully, I might miss some of these things if he ever quit doing them. Although, he is free to stop doing these things just so I can test out what it is like. :)

On the MS front...

The eye washout has not completely gone away. Josh needs a steroid for his eyes to knock out the inflammation. Dr. Emily called in IV Infusion that can be done at home. Sounds dramatic, but it really isn't-just more of an inconvenience. Josh does an incredible amount of paperwork for his job. Really, I may never understand the amount of paperwork that he does. The IV is being done at home which works out really well for him so he doesn't have to stop work. Just another perk of having a home office. He has to do 3 consecutive days of the steroid. We are hoping to get them started today and finish on Saturday. I laughed and told him maybe he will have a cute little nurse come out to set it up:). It amazes me how far technology and medicine has come. The fact that he can do this from home and it not have an impact on his work is truly amazing.

Back to the "I'm Sorry's"...

Our wedding was FUN. Like, so fun I didn't want to leave. In fact, when we left the reception the first time, no one was outside to see us leave. We had to do a redo and tell the band to stop playing music so everyone would come outside to see us hop in the limo to start our happily ever after. Our friends and family celebrated (maybe celebrated a little too much:), but the main part of our wedding was our vows. When I took those vows, I signed up for MS. I signed on the dotted line when I signed our marriage certificate. Did I know it at the time? No. When you are young and in love, you feel invincible. All you can imagine are picket fences, babies, puppies, and rainbows. (At least as a girl I imagined this. I would be interested to see what Josh imagined:) Would I do it all again and sign up for MS? Yep. And guess what? I. AM. NOT. SORRY. And guess what else? I will NEVER be sorry.

by Lyla at Dear Diary

I have been a runner in my lifetime. Some days I still feel like one, but most of the time I am happy to have the memorable experience of sustained motion. In 1999 a friend talked me into doing a "fun run" with her. She had just had her third child and wanted to get back in shape. She had been very involved in track during her college days and was really quite good, and fast.

I said yes, and over the next five years I ran in several events including four marathons and three triathlons. In 2004 I had a training accident which inadvertently led to an MRI revealing evidence of demyelinating disease. My next marathon had begun. It took another six years of head scratching before the diagnosis came. Oddly welcome. Nice to know the reason why, right?

Some questions though, do not have answers that feel satisfactory. And then there is the whole thing about not knowing what the future holds. All there really is to plant my feet on is what is in front of me right now. I am more than ok with that. Distance running is kind of the same. Being in the moment, being with myself is a big part of what I would try to do during a long run.

Now the distances involve navigating the space between my CNS and my body, the emotions that surface with the myriad neurological sensations and the time it takes me to employ good old-fashioned self care. Running shoes are optional.

by Cheri at I Tri not to Forget...

After transitioning to the autoimmune paleo and Wahls protocols, I definitely have had more good days than bad, as far as my MS fatigue. I have also learned to be more in tune with my energy levels, and therefore what I schedule for the week, making sure I rest if I need to, so I don't crash.

Having said all of that, there are days when I feel really good and I get caught up in the moment and push it too far. For example, last weekend, I started off my Saturday with a 1 hour vinyasa flow yoga class from, then went for a walk with my daughter as she rode her scooter around our neighborhood and I ended up spending a couple hours in the afternoon out in my yard cleaning up the garden. I felt great and then it hit me, like somebody turned my switch to "off". I had just fixed dinner and then realized I was exhausted, and needed to lay down that minute. I basically ate dinner and went to bed and that was it for me. A couple months ago, I would have been down for the count the next day too, but I wasn't this time. I took it easy the next day, but I was still able to function, so I feel like I am making progress.

I believe that my body is slowly healing, and I am making peace with this new life, but sometimes this "MSness" can just sneak up on me...

This concludes the 155th edition of the Carnival.  The next Carnival of MS Bloggers will be hosted here on June 5, 2014. Please remember to submit a post (via email) from your blog of which you are particularly proud, or which you simply want to share, by noon on Tuesday, June 3, 2014.

Photo Credit: Dawn - Pink Chick via Compfight cc