On Friday, the man & I journeyed down to UPenn for my follow-up with our (my?) new MS specialist.  I have to say… anti-climatic.  I’m not sure if I have the time or patience to put together a really thought-provoking diatribe about my frustrations with the short-comings of our medical industry.  But please know that my non-sensical rants at the height of frustration and fatigue focus fairly specifically about just that.

Not knowing much more now than we knew before is disappointing.

Signing up for a myriad of tests … again … that’s just downright discouraging. I know it’s part of the process – part of what needs to be done.  But man oh  man.  I just want to get to the point where my calendar isn’t a lot of green ink and doctor’s appointments.

It’s also ironic that as I wade through all of the ins and outs of MS, the Obama-care debate is raging … in fact, the government might or might not shut down tomorrow.  Craziness.

Healthcare.  It’s a real bitch.  And then again, it’s the most important thing of all. It carries such a weight of importance.  It sot of blows my mind that for much of my twenties, I didn’t have insurance, and I didn’t even think about it.  What if my benefits significantly change now, and all of a sudden, MS cripples my husband and I financially?  It’s frightening.

Anyway.  Enough with the doldrums!

Lots of good things happened to redeem September, so I’m heading into October uplifted and enthusiastic.  It’s my favorite month, I’m feeling more mobile and more comfortable in my own skin again, and those things have to be the foundation of my outlook.

So, I have to admit something.  I have read through some of my past posts, and while I like what I had to say (haha, I did feel the need to say it, after all!) I feel as though I’ve walked quite a line in my narrative.

It makes sense, as I’ve also been walking quite a line in my mental attitude and preparedness for the changes that have been occurring in my life.

I wanted to really embrace and document what I’ve faced as perhaps something that someone else could relate to … but I don’t know that I was or am particularly prepared for all that.  When all my health issues began, I did the only thing I knew how to do ~ I ignored it.  My mother had gotten ill during the exact same week, and that seemed infinitely more important.  I don’t think I specifically neglected myself ~ I just prioritized myself beneath my mother.  I don’t regret that.  When staring down the barrel of two guns, I think I chose the easier to deal with.

That, and the intensity of my struggles seemed to pale in comparison to the journey my mother was travelling.  That balance has tipped a little in recent months ~ sort of forced me to face things I would rather have ignored.

I haven’t always handled things well ~ it’s a huge thing to wrap one’s brain around ~ the idea that I might never have full feeling or control in my legs again.  After breaking my foot on my honeymoon, I definitely felt frustrated and deflated.  I wanted to get back to the mat and start running again in preparation for a half marathon (ah, dreams!).  And just as my foot began to heal, my left leg just… well, sort of stopped working?  The man and I journeyed to NYC to visit my brother and I could barely climb two flights of stairs.  A week later, I nearly collapsed climbing to our seats at PSU … not once, but three times.  It was once of the most frustrating and humbling things I have ever endured.  I sat on the bench, staring out at the field, a field I have watched every year of my life, barely able to see anything, hot tears stinging my ineffective eyes.

It’s difficult as well, to read other people’s accounts of having MS and living seemingly normal lives.  I feel as though John and I have made so many valiant efforts to be as proactive as possible ~ juicing, and limiting dairy and gluten, and going to bed at 9pm (because I can’t get through a day without at least 10 hours of sleep).  And nothing feels as though it’s effective at all.  I have gone from a weekly injection to a daily injection, I did my fourth course of IV steroids (and by far my very worst experience).  I try to walk my dog around our yard, and live as normally as possible … and yet sometimes, I’m just irrationally angry.

John believes that we will find a balance ~ find a way to live a fulfilling life.  And most of the time I really trust him.  But I worry about the burden of this on his shoulders ~ the worry of maintaining health benefits and paying bills and attending doctor appointments (of which we have an abundance).  I worry about the strain of a disease like this on a relationship ~ no matter how strong we are together.  I worry about my own job, and how long I will be able to do it before my physical in abilities handicap me.  And I know that worry only makes things worse … only, how can I not worry about these things?

I come to this blog to remind myself of good things ~ making my lists of things to stay positive about, focusing on things to look forward to (which, sidenote, is NOT the Steelers season so far!).  I don’t want to dismiss my MS but I also don’t know that I want to be that person who is solely focused on it.  I don’t have much of a choice right now  … it’s taken over my body and all I can do is hope and wait that the steroids do their job.

I want to hold onto the choices I began to make at the beginning of this ~ committing to a healthy lifestyle and diet, spending quality time enjoying my friends, family and incredible husband (I get such a kick out of calling him that!).  Sometimes, I will lose my way, and I hope that when I get lost, I can come back here, and find my center again.

Til tomorrow.  xo

Okay, so here are the facts.  I absolutely broke my foot this summer, and it absolutely took longer to heal than anticipated.  It opened my eyes to what it’s like to be physically challenged going through life on a day-to-day basis.

But my foot isn’t the only challenge I’ve faced, and that has been even more eye-opening.

This past Saturday, the man and I explored Ikea on a mission to find a piece of furniture for my side of the bed.  For anyone who hasn’t wandered the paths of Ikea, it’s a pretty vast place and the walk is long.  Along with limping a little due to my bum foot, I have also been dealing with stiffness and weakness in my legs, courtesy of MS.  As I struggled to stay on my feet and walking at a normal pace, I got frustrated with all the people around me for being totally oblivious of me ~ cutting me off or walking in front of me ~ or my favorite, not moving out of the way, thus forcing me to change my course.  I got mad ~ wanting to spit the words “This isn’t hard for you like it is more me!” at every person who bumped me, or caused me to lose my balance.

And then, as I sat on a day bed resting my legs for a minute and regaining better sight (exertion, heat and stress cause my optic neuritis to flare up, which as you can imagine, is always fun), it occurred to me that physically, I look exactly the same way I did a year ago, before all this bad sh*t started to happen.

There is no way for anyone who looks at me, sitting or standing, to know that anything is wrong with me.  And if a person -at this point- sees me shuffling along and favoring my left foot, they might assume I sprained my ankle.  Not that I’m struggling with my legs.

And I wondered how many times in my life I might have caused difficulty for someone else, struggling like me, who showed no outward physical symptoms that anything was wrong.

It sort of bummed me out.  And it’s been on my mind for days.

Do I want sympathy?  No.  Do I want people to treat me with kid gloves because they are concerned I am not as capable as another, fully healthy person? No.  But with that comes taking the lumps of walking around Ikea and being treated like everyone else … when physically, I’m not.  When physically, whether I look like it or not, I’m struggling to walk as normally as possible.

In January I came out of the gate strong ~ stay positive, live life normally.  Be normal.  That has gotten increasingly challenging as symptoms have taken over my body and I’ve been handicapped by a broken foot.  Through my mother, we visited an MS specialist at the beginning of August.  He felt my medicine wasn’t working, so as of last week, I’m on a new course of treatment.  We are hoping the new meds and the new doctor help to get things under control, but it’s definitely been an uphill climb.

This summer has been hard and things might be hard in the future.  But I hope I always have moments like that moment at Ikea.  Reminding me that from the outside, I’m still me, and I look the same as I’ve always looked.  And in truth, I am still me. And that’s how I hope I stay.