quick MS recap

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.

 

 

living

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

 

grateful #photofriday

I’ve never seen my husband cry.  He’s not that sort of guy.  But today, on the phone, he said his eyes were full of tears of joy.

Today brought us some truly great news.  I don’t think I realized the weight I was carrying and how it was eating away at me until the fear went away this morning.  Heavy, right?

Some pictures that make me happy for today’s #photofriday

Two of my favorite places on Earth ~ Jackson Hole, WY and Bamburgh, Northumberland.  (Yes, Bamburgh does actually look like that).

I cannot express into words how much I love my little brother.  It’s a lot.  I’m lucky to have such an awesome sibling. I just wish there were more pics of us at this age.  Too cute.

My dad, my brother dressed up as Richie Tenenbaum and me at a PSU tailgate.  A tradition we have had since before I was born.  Penn State is part of who I am.

 

My mama and my aunt.  The twins.  Both incredible people, and the best examples of being a strong, smart, independent woman.

The family John and I have built together over the past five plus years.  Couldn’t have survived this summer without my man and my pup.  They are my whole heart and soul. (PS.  This isn’t the most flattering photo of the two of us, but it is our whole family, including Lucy’s beloved Dragon Draco).

Happy Friday the 13th.  Xo.

moments

I love the fall.  Even though sometimes life just feels really hard, and for me, now is one of those times, I still love the fall.

The recent two-day heat wave has been a bummer ~ but my weather app tells me confidently that this weekend is going to be lovely (aka, in my perfect place, the 60s), the man and I are headed to Happy Valley to root on my alma mater and I am currently enjoying my newest love ~ Zen Tazo Green Tea, from the Keurig.

My brain has been at full capacity lately ~ full of life, and philosophy, and work (of course).  I guess often times, you don’t think about things until you’re up against it ~ like the benefit of good health benefits.  I went for years in my twenties without coverage.  I was only added to my husband’s plan earlier this year ~ and then, of course, it became an unexpected blessing to have quality coverage as we’ve navigated the rough waters of MS diagnosis and (endless) testing and (lifelong) medication.

Sometimes it’s hard to see those blessings when everything else feels so hard.  I keep thinking of the saying “you can’t see the forest for the trees” but I think it’s more like “you can’t see individual trees for the forest”.

This week, for instance, I discovered the green tea K-cups (which seems like a small thing, but when you have a Starbucks addiction as I do, but choose not to spend $5/day on a hot beverage, this is an amazing discovery.  In fact, I have been searching for something I truly loved for the Keurig for months … and this week, poof!, there it was.  Beautiful!).  I also happened upon Melody Gardot on Pandora, and until I began listening to her music, I didn’t realize how much I loved that jazzy, throw back sound ~ like sitting in a Parisian nightclub wearing a ’20s flapper dress and sipping a gin fizz.  And I began listening, and I felt at ease, remembering moments from my youth and my mother’s Ella Fitzgerald sings the Cole Porter Songbook album.  The music evokes an air of innocence ~ curled up & reading gentle books like Coming Home by Rosamunde Pilcher (quite probably my favorite book of all time), or wandering through misty green fields wearing Wellington boots.

Life can be ugly and messy and mean and … well, gray.  Gray as in ~ no right or wrong, just the slushy mess in-between.  Maybe I like being naive, maybe I like clinging to the dream of simplicity.  I’m not sure.

I think this time of year breeds nostalgia ~ the memories of back to school, and big snuggly sweaters and hot chocolate.  Flashbacks to a time when life didn’t feel nearly as hard as it does right now (well, for me at least!)  Back when you had to ask your parents to borrow the car, get home by curfew ~ when the biggest angst was being asked to Homecoming.

I don’t know if I’d want to go back to a time before I knew my husband.  I wasn’t lucky enough to meet him in high school … or college.  I think we both had some learning and growing to do before we could fit together.  But no matter how nostalgic I am sometimes for the simplicity of being the child instead of the adult, I guess that’s the beauty of life.  Could we all have so joyously embraced life if we knew then what we know now?  Maybe… maybe not.

I love the fall.  I love the changing colors and the cooling temperatures.  I love the smell of the leaves and the routine of football weekends.  I love the ramp up to the holidays, and the anticipation.  The man says we can better appreciate and love each season because none last ~ they cycle through and there are ups and downs of all the seasons (it is back-to-school after all, I guess).

One of my favorite mental images about the fall comes from You’ve Got Mail.  I can’t remember the line precisely ~ it occurs in voiceover, as the audience is introduced to the two main characters’ email relationship. The line includes the phrase “a bouquet of freshly sharpened pencils” which to me, was so visceral and real.  What an incredible image.

Anyway, that’s a little ramble from me.  When I can’t get the doctor’s office to call me back, or get my boss to make a decision about insurance coverage or find a dog-sitter the man is happy with ~ when all those things are happening at the same moment, I am so glad it’s fall.  And I have a Green Tea K-cup, and Melody Gardot is singing to me.
Xo.