Thankful

On this thanksgiving I wanted to share just a few of the many things that I am truly thankful for: 

I am thankful for my truly amazing husband.

I am thankful for my all six of my parents, my one awesome brother, my grandparents, my stepsisters, stepbrothers, brothers-and-sisters-in-law, aunts, uncles, cousins, nieces and nephews who truly light up my life every day.

I am thankful for our beautiful home that we live in. 

I am thankful that we always have enough food on our table. 

I am thankful we have clothes on our backs. 

I am thankful that we both have cars to drive that work and are 100% paid for. 

I am thankful we have steady income right now. 

I am thankful to be able to be back in college, at age 29, with the hopes of one day finally becoming a college graduate!  

I am thankful for red shoes, which even on my worst days, make me feel beautiful and powerful. 

I am thankful that my hands still work most of the time so that I can play Oscar, my piano. 

I am thankful for the days when I see well enough to drive. 

I am thankful for the team of doctors and nurses at Shepherd Spinal Center and other places, including my dad, who all help to take such good care of me year-round. 

I am thankful to have so many dear friends who cheer me on, love me and make me laugh always. 

So I put it to, fabulous readers: What are you thankful for this year? Feel free to share one favorite thing or more than one. 

Leave a comment and tell me what you're grateful for! 

Finally, I am so thankful for the people who visit my blog to check in on me. 

People email me or come up to me and tell me that I inspire them, but hearing that my small journey on this earth can do that for even one person means more than you will ever know. It inspires me to know that people out there read my writing and think it isn't half bad :-) 

So thank you...from the bottom of my heart. 

My love always, 

Caroline

XOXO

Blip...blip...blip

I am sad to report that after feeling worse and worse over the past 10 days I spent the afternoon at Shepherd Spinal Center (thanks for taking me Mom!) and my doctors think I am having another "exacerbation" or "episode", but I think I may prefer "blip". A blip implies a short, brief anomaly on the radar and while it is my third blip this year I hope it will be short-lived and I will be feeling better sooner rather than later. I will not bore you with details, but it is mostly just worsening of existing symptoms and a few mild new ones (feet totally numb all the time, and weakness in my hands). I am trying to stay positive, optimistic and rest lots and let the high-dose steroids run their course. 

With only 18 months of this thing under my belt, I still have a lot to learn about my disease. While I certainly hate feeling this bad right now (and for the third time this year!!) in comparison to other MSers, my "episodes" have been fairly mild, i.e. I haven't gone blind or lost total use of any of my limbs, etc. etc. I wouldn't wish an MS relapse on my worse enemy, but still in the grand scheme I am grateful that I don't have it worse. 

Anyway, just wanted to update everyone. Keep us in your thoughts and prayers for a quick recovery. I want to be able to enjoy all the upcoming festivities. Chris and I are going to have our first ever Christmas tree in our new house! Plus I am still in college and have exams to pass! Lots to do. Gotta feel better Sooner rather than later! 

Look for my thanksgiving post to follow this one....and I expect lots of audience participation :-) XOXO

PS- for some reason this round of steroids has me looking like the Stay-Puffed Marshmallow Man. I am so swollen that the skin on my face is peeling, I can't get my wedding rings on and my shoes have all shrunken in my closet!! So if you have the pleasure of seeing me in Marshmallow mode feel free to bring along the graham crackers and hershey bars and we'll just make S'mores together :-) hehe

Pumpkins

For most of us with chronic illnesses, every day is a balancing act.

With MS, you have to measure your "spoons" ahead of time and then sometimes re-evaluate your spoon supply throughout the day. (If you missed the Spoon Theory, you can read it here: http://wearingredshoes.blogspot.com/2008/03/spoon-theory.html )

For instance, I wanted to go to Target the other day. At the time I felt I had enough energy/eyesight/balance left to drive the 7 miles to Target, shop and drive home. About halfway through shopping I realized I was about to turn into a pumpkin (my latest catch phrase which reminds me of Cinderella, another lover of fabulous shoes!) So I am at Target and all of a sudden I find myself holding onto the shopping cart for dear life (in other words, my balance was beginning to fail me) and my legs felt as though they were pumped full of lead.

This type of scenario happens to me alot and when it does I have two choices: A) ignore my body, push on and finish what I am doing or B) go straight to the nearest register and get home to rest. Frankly, there are problems with both choices.

First of all, I want to be able to finish whatever I am doing: shopping for groceries, eating lunch/dinner with friends, etc. It is extremely irritating when the rude MonSter interrupts what I am trying to do!

On the other hand, if I keep pushing my body when it starts to give me these warning signs then inevitably I will have to pay the price in some way later on. It might be later that day (my pain level spikes or my vision gets worse to the point I have no hopes of driving or seeing anything worth a darn) or it might be tomorrow that I pay the price for what I did today.

The other thing about chronic diseases is that you have to take A Lot of medicine just to stay afloat. Some days I feel like I am 29 going on 89, certainly with the amount of my daily medicines. People with MS and other types of nerve damage don't have a lot of choices. They just don't make that many drugs to treat this kind of complicated disease and unfortunately none of these drugs come in XR versions. XR stands for Extended Release, meaning take one pill in the morning and then it releases little bursts into your body throughout the day. So sadly I have had to become a Pill Popper. I take pills 5-6 times a day in order to manage nerve pain and spasticity.

Last week I helped my stepdad do hair and makeup for his show "The Sound of Music". I had several kids assisting me in The Cave, as we affectionately call the makeup room. I would arrive around 4pm and help put on makeup and braid hair and put in bobby pins and during that time I would inevitably have to take a dose of pills. I was so afraid I would forget to take them, with the wonderful distraction of 45 teenagers, so I set my phone alarm to go off to remind me. By the end of the show's run, I had kids checking on me, "Caroline, you weren't in the Cave and your alarm went off. Be sure to take your pills," or passing them over to me while I braided hair.

I had worried so much about having to take all these pills in front of them, but it sparked all sorts of wonderful conversations, and the students opened up in new ways and shared things with me about their own lives. No one has it easy- everyone has some burden to bear, whether its a serious health problem or some other type of challenge to overcome. Everyone has Something. 

I think what makes it so hard sometimes is that feeling of being alone in the world. I often feel alone in my disease. I am the only one trapped in this body, with these symptoms. It is easy to feel alone. But just the simple act of someone else reminding me to take my medications, or passing them across the room to me - those tiny gestures - they made me feel just a little less alone. To quote the cheesy "High School Musical", "We're all in this together..." and that means you have people on your side always. No matter what happens to you, No matter how many pills you have to take, Even if you run completely out of spoons and turn into a pumpkin right there in the middle of the Target!! No matter what happens there are Always people cheering you on, in large ways and in tiny ones, too. And sometimes it is those tiny gestures of love and friendship that keep us all going. 

Friends

This post is late, as are most things lately (read previous post!!) but nevertheless it was very important for me to share!!!

Let us go back in time to September 13th, to Great Neck, Long Island for the wedding of Chris' college roommate, Dominic and his lovely bride, Alexis.

We have both adored Dom since the UPenn days, but we fell in love with Alexis within 10 minutes of meeting her. Chris and I both had the same reaction: "Oh man...I hope Dom knows to hold on to this one!!" :-) We have enjoyed several destination wedding weekends with them and the other 415ers, and while they currently live in NYC we have talked them into coming down to visit a couple of times. Along with our dear friend Kempton they were the icing on the cake of Chris' surprise 30th birthday party. I will never forget the look on Chris' face as he turned around to see the 3 New Yorkers standing there to celebrate with him.

People that fly in for less than 48 hours just to celebrate your birthday with you are pretty serious friends.

But I digress...back to the wedding! It was a lovely weekend catching up with old friends, making new ones, getting to see the "Perfect Family" (I LOVE the Ainscough's) and toasting the soon-to-be Mr. & Mrs. The ceremony and reception were just stunning. Venue was amazing, every detail taken care of, and the Bride looked like a movie star. Chris stood proudly as a groomsman and before we knew it we were all enjoying the reception together.

When it was time for dinner we all headed to the ballroom. The table settings, flowers were just gorgeous. As I sat down I noticed my fancy china, silverware, a rectangular shaped card that I assumed was the menu and then a smaller round card above that. I wasn't seeing too well by that point in the evening (and my magical glasses clashed with my dress so I wasn't wearing them) but I finally closed one eye and tried to read the interesting round card to see what it said...and I was Speechless.

Printed out at every single guests' place setting was a beautiful card that read, "Dear Family and Friends, In honor of our guests, we have made a donation to the National Multiple Sclerosis Society. We thank you for being part of our lives and joining us on our wedding day. Love, Alexis and Dominic". And all of a sudden I am blinking back tears and doing that silly waving my hands at my face thing that women do when they are trying not cry! hahaha

Instead of giving their guests favors, our dear friends gave a donation to my favorite charity, in our hope for a cure. I don't think friends get much better than that.

I always feel so guilty about not spending enough time with the people I love, for not being able to do more, to fly up to NY or Cherry Hill to visit the people I hold near and dear, to spend more time with my family and friends here in Atlanta...I always feel as if I am not a good enough friend because this disease and just Life in general robs me of so much energy and time.

And then I see how much my friends love, support and appreciate me with an amazing gift like the Ainscough's gave me that day and I realize that the Wizard, as he spoke to the Tin Man, was right all along:

"And remember my sentimental friend...that a heart is not judged by how much you love, but by how much you are loved by others."