Multiple Sclerosis Anniversary

Exactly 5 years ago today I got my official MS diagnosis. It feels like so much longer but since it can take over a decade for a MS diagnosis I guess that’s why.

MS sucks, it sucks super hard, for me anyway. Every person’s MS shows up with different symptoms and/or severity.

From 2016 through 2017 my brain volume measured the same. From 2017 to 2018 it decreased in volume compared to other women my age with MS by 11%. From 2018 to 2019 it decreased another 16%.

My “norm” went from the 91st percentile in brain volume compared to other woman with MS in my age group to 64th percentile in 3 years.

While the scans show no new lesions it cannot measure my symptoms or disability. My EDSS score has been 4.5 since a study I did for a neurophysical therapist in 2016. The only way it increases is if I go to a wheelchair.

I see posts about people being “warriors” and envy them. I wonder how they can stay so positive and hopeful. What’s the secret? Is their MS not as sucky as mine or am I just weak?

People have asked my opinion about Selma Blair and her bringing light to this disease. At first I was super pissed about it. Good for her, she has money and unlimited resources and probably doesn’t have to worry about working to survive.

The treatment she chose to under go is not something available to those of us with the same disease because insurance only covers it for most as a last resort or not at all.

Here’s what I do know, I can’t move to Europe where stem cells are approved form of treatment. I cannot afford to do it on my own, especially since I only got a 15 month break from some of my symptoms not even all.

I know my boys need a mom, I know that my experience may help one person to feel understood and less alone. I don’t know what the future holds or what it will look like.

I hold some semblance of hope that treatments will get better before it’s too late. Someone out there hold an idea on how to fix our brains, they just may not know it yet.

When Your Appearance Matters to Your Child

My typical outfit for the last 11 years has been jeans, a t-shirt and something to cover my head due to alopecia, typically a bandanna of sorts or something like what cancer patients wear when they do chemo. I shave my head so that the significant loss of hair due to alopecia doesn’t break me every time I look in the mirror.

When I drop off my kids and pick them up I am in my usual attire, that’s what I am comfortable in, when you work in IT and they let you wear it every day you get used to it. Depending on how I am feeling I may wear a “nicer” top when going to events at the school (parent/teacher conference, back to school night).

I volunteered at my second graders school for one hour this week. It consisted of sitting on a stool next to a filing system where the kids school work goes and then putting those papers in the corresponding folders. Easy enough for my wonky brain and broken body, though I must admit that doing that for an hour, as simple of a task it may be, actually wore me out. I felt more foggy and fatigued than usual but my kid was so excited I was there.

That being said, and knowing that I already draw attention with a service dog, I put on a more business casual top for that day and my son picked out what was going on my head. He did not approve of the plain black scarf I was going to wear tightly around my scalp with a knot that made it look like a bun at the back.

He is keenly aware of appearance at the ripe age of 7. Most recently he likes to check himself out in a full length mirror attached to a cabinet in the living room where we keep the snow gear. He wears light weight jackets around his waist like an accessory, and makes careful selections about his shirt each day. I expect this from my 13 year-old, I wasn’t prepared for it from my 7 year old.

The oldest made a comment the morning I went to volunteer asking  me where I was going because I was more dressed up than usual. While I would like to think people should just accept us how we are, fashion choices and all, I know that is not the world we live in. It saddens me to think that what I may be wearing will have an impact on how classmates treat my son, it doesn’t make sense and yet that is the world we apparently live in.

Until the world changes, I will continue to let my kids advise me on attire when I am attending something with them or at their school because I love them and don’t want their life to be any more complicated than it is having a mom with MS, Meneire’s disease and a service dog.

Motherhood, Multiple Sclerosis and Isolation

Isolation is an unpleasant feeling and I think perhaps a bit shameful. At least I feel shamed when I’m feeling isolated.

I have friends, I have a solid group of mom friends in addition to non-mom friends. So why do I feel isolated when my husband works late almost every night during his first week at his new job? In part he’s late because he’s getting to know co-workers so he has to stay to finish work. I’m not angry at him for it, I’m actually happy for him. Finding people to connect with in a new environment is hard, it gets harder with age.

Perhaps I’m a bit frustrated at handling everything at home and dealing with sibling fights, homework, dinners, Cub scouts and all the other shit that I normally have a partner for so I’m not out numbered. So I feel bad and a bit ashamed of myself for getting upset that I’m here, parenting alone with no energy.

More likely it’s because this week as been rougher than I’d hoped. Taking a week off of things to recoup from being in a social setting for 10 hours hasn’t been as relaxing and restorative as I planned.

I feel terrible, my body aches, I’ve had a headache on the verge of migraine for 5 days now. I had a cookie that I feel bad about eating because I was doing really good with keto. Arguments about bed times and video games are never ending.

No one wants to hear how super shitty I feel this week so I sit with it, hold it in like a secret. I don’t want pity, nor do I want someone to say the things they think they should because I answer honestly when they ask how I am.

So I isolate myself more so I’m not a burden to others. I don’t have to be another thing for someone else to worry about. I’ve got this, I may not be doing well but eventually it will balance out, it usually does.