Ugly Like Me...

Starve the sickness, feed the heart (LBI 18-miler)

The problem with LBI is that every time I spend any amount of time there (that extends past a day) I get delusional. There’s a part of me that wants to march right into Fantasy Island and fill out an application for ‘cotton candy lady.’ How cool must it be to dip those flimsy, white paper cones into those vats of pastel-colored sugar and spin those little happy cones for kids all night long?

And now I can run with these delusions a little longer because I am no longer teaching, but living on writing alone. Holy smokers… I can do my job from anywhere! I can even write AND then do the cotton candy lady gig for FUN (and to support my kids’ cotton candy addiction). I would imagine I wouldn’t even need a sitter if my job were at Fantasy Island. I will stick AJ on the Bee ride, lock him in with a man purse full of tokens and let him buzz all night.

But I imagine that Long Beach Island gets lonely in the winter. If you have ever been there in October, the winds get bossy and shove you around. And they are cold. Really, really cold. Which leads me to my second delusion. I want to run the LBI 18 miler again. I have run it twice, both before my MS diagnosis. But how do I know I didn’t ‘have it’ then? Why should I stop chasing these dreams of chasing long-distance finish lines? How many things could I do if I just tried and forgot that I had MS?

My chiropractor Dr. Todd Carnucci always fights me on running. He’s huge into snowboarding. He could care less about running. ‘It’s so bad for your knees’. I’m super close with his wife Nicole, who strangely enough, I met when we were trying to conceive our sons. We were both on Baby Center boards for support. We sent each other super long, personal emails for about 6 months before we realized we literally lived down the street from each other. We got pregnant the same time’ish. Had the same due dates. AJ came a week before Xander.

Even more strange is that Todd, Nicole’s hubby, was the only doctor who would listen to me when I was convinced something was wrong. I didn’t know chiropractors could do this, but he ordered my MRI’s. So Todd has taken care of me since I was 6 months pregnant and two years beyond my MS.

He knows every curve, every lesion in my spine. I go to him several times a week. I’m so used to him dissing running. It’s like it is part of the furniture, or some PT machine in his practice. I tune that out as he adjusts me.  I sit on the edge of a bench, and he hugs my back as I fall back into his arms.  Click. Click. Click. Click.  Some days I will go the very next day and I get the same amount of ‘clickage’.  My spine simply comes undone, no matter what. Todd said to me a few visits ago (I almost fell off the table), “Jame, ya know what? Run. No matter you do your spine goes crazy. F’ it. Do what you love.”

So maybe it isn’t THAT delusional if I tried to run the LBI 18-miler. Actually, going from 0 miles to 18 in 13 weeks is a smidge delusional, unless you are Bill Rodgers or somewhat ‘olympic’, BUT I don’t have to run the whole thing. I could run as far as I could and walk. Run as far as I could. Walk. And repeat. And if I completely bonked, there’s a number of Pancake Houses that line the course. I will just go eat some pancakes and move on, no?

People have all of this advice on what to do and how to treat whatever sickness you have. And people get all statistic and research-driven. Which is necessary. But there’s something to be said about being sick and continuing to do something you love. We need more research in how healing that can be.  Feeding your heart, while starving your illness. On my heart's behalf-nom nom nom...

Twelve more cases reported of brain infection (PML) for Tysabri patients (that’s me). That brings a total of 145. Total number of those that resulted in death is 29. For those who are still living with the infection, it isn’t pretty to live with PML. You are a vegetable. That is the worst that can happen to me on my infusion. What is the worst that happens if I run? If I try? The worst would be the realization that I can’t, a long walk home, and a short stack of pancakes. I’m going for it.

 

 

 

 

 

 

 

Meatball on his burfday...

I’m typically an early riser. And it isn’t because I’m cool and June Cleaver or whatever. It’s because I’m more of a loner. If I wake up early enough I get  some time to myself to drink my coffee and reflect and read the Bible, and then Perez Hilton, and maybe write…alone. But, I haven’t woken early, not on any day, thus far, since we've been on vacation.

My spine and the coils in the bed don’t agree (on what I don’t know) and I keep coming out to the giant sectional in the living room at 12’ish and falling back to sleep at around 4. Only to be woken by my son, knocking on my forehead, saying, “Milky?” It is always this cute question at first and then ends up, as my brain starts to come to, being more of a tantrumy demand. “Milky! Milky! Milky!” Three bangs on my forehead.

But today, ahh today. I opened my eyes mega early. The sun was excited and knocking on my window. Get Up! My belly has a Christmas feeling. Why? Milky? Errr, what day is it again? Ahh. It is AJ’s birthday!! My little man is two.

On Meatball’s 6 month birthday; we fittingly, were having a meatball dinner celebration. That was when I got the call. I ‘got’ MS. It has been a year and half of sorting out life and values and what means what. Almost two years of comparing his little light to mine. His was brilliant. Mine seemed to be going dim. At first, yes, but that was brief. That feeling or observation of stark contrast was sobering and overwhelming at first. It was intense. And then, it didn’t matter. Because this little man, this little light of mine, was quite honestly, magic. So brilliant I couldn't look away. Especially NOT to look at me and my sickness.

Walking the world, his hand in mine, has been magical, despite the little uglies that have occurred along the way. Those little uglies are so peripheral compared to THIS. Him. Meatball. AJ.

I thank God for you every day. He has been so good to me, always. And I thank God for the men and the women that surround you and model what it is to be good people. That is, undoubtedly, the surest way to grow up ‘good people’.

I was reading a dedication page in a book about God the other day and the inscription was to the author’s father. It read, For my father, following you taught me to follow Jesus.  If you don't believe in Jesus, replace 'Jesus' with the word 'GOOD' to help you to better understand what I mean.

I pray you learn by following me. I pray you learn how to follow the good and how to make small of the dark. And I pray you follow my friends and family in the same way…hands squeezed tight…always in the light. Happy birthday Meatball. Everything is magic in the world when I’m walking it with you…

Lovecoasters and Turn Ons

 

I used to come here as a 16 year-old and loiter outside Fantasy Island. I thought I was big. Looking back, if you used one of those sticks--Must Be This Tall-I wouldn't have been 'tall enough' for Grown Up.  I wasn't THAT big. Until I met Patrick. He was older and preppy. A dark haired Irish boy. He went to Lehigh. He looked like a Kennedy.

When he was done with me, I was officially 'grown up'. Whip out that stick. Allow me on the ride. The one that involves big girls and beautiful boys and first loves and heartbreaks and REM songs and the smell of sun tan lotion. Long make-out sessions that made you feel turned on. I didn't know what that feeling was. I was more accustomed to those super awkward 'I think I bit his lip'  kind of kisses. Patrick was magic.

I remember sitting in the dark on a lifeguard stand with him. We didn't know each other. Our pheremones wanted to. We were stuck with each other. Our friends were off somewhere on a distant point on the beach, making out.  I cooked too much in the sun that day. I was starting to bubble up. He kept touching my face. Made me dizzy. I remember stars, lots of them. Playfulness. I was funny that night-I was ON. I remember the stand crashing and tipping us onto the sand.  I remember him on top of me (not in a scary way). I remember that kiss. Everything after that was a blur. My relationship with him was a blurry dizzy exciting love coaster. It was exhilarating. And like any awesome ride, it was over too quickly.

Twenty years later and I find myself on the same sand, only now I'm with my family. And the exhilaration comes from the calm. Washing the dishes while looking through a window overlooking a clothesline with our fun gear drying in the sun. Bikinis. Spongebob hats. One lone sock. A breeze. My family lining up for dinner on the deck. The Lawrence Welk Show on in the living room because it reminds me of my grandfather sitting next to me in his chair when I was a child. I can almost smell him over the smell of my pasta. The thought or the feeling overcomes me-how happy to have a family. How lovely to to be off that ride. I don't want any rollercoasters. I want calm.

MS is a bit of a coaster ride for me. I can have the best day ever. Be warned, best day means energetic and washing things and cleaning things and wrestling with my kids. And the NEXT day, seemingly out of nowhere, I will have a hard day. Can't walk. Too tired to lift my head. Weird things in never known places hurt. It is so up and down and seemingly out of my control. Ick.

Last year when we came down here, it was so much harder. We were on the first block and before I even got to the beach (a whole block, say with sarcasm), I would yak and my legs would stop working. The heat is very dangerous for people with MS. I remember the frustration of WANTING to be ON so I wouldn't blow this for my family. When MS lets me down, it lets them down. This year is different. I was up at 7 am yesterday and got in at 11 PM. The day seemed effortless. It was beautiful. God is so good.

 I didn't like rollercoasters at 16. I don't like them at 36. Whether they are lovecoasters or MScoasters. I don't like watching my kids on rollercoasters because that ONE  article I read a year about the poor baby that fell off the ferris wheel haunts me. I don't like a lot of things. But...

I love being able to take my children on vacations. I love creating traditions and memories of experiences with this nuclear family I created. I love adding to their nostalgia memory bank. That smell reminds me of vacations with my family as a child. It is better than any THING I could ever give them. Will AJ remember playing in the outside shower as I hung clothes on the line out back? Will he smell pasta wafting through the air and hear Lawrence Welk every time he's near the ocean? Will they see me every time they see a sea shell and smile? Will the sound of their dad's laughter as he hops over a crashing wave echo in their ears throughout their lives, no matter where they go?

But more importantly, how old before my dear Zoe goes on a lovecoaster? Can I take that ride for her so she doesn't have to scar the way we do after our first broken heart? And our second?  And our third? Can I take that hit for her? I can't. But hopefully these carefree days will overcome them.

What NOT to say to someone who is sick(Foot In Mouth Disease)

There's  something that is heavy on my heart lately.  So I’m just gonna write about it here and get it out. I'm totally purging my heaviness on you. Gross. You would think I have some inkling of what to say to someone when they are seriously sick and scared. Come to find out, I have no idea.

My dear friend’s hubby, who I now consider a friend,  is sick. He’s been through a month long hospital stay, the loss of a gallbladder, and now some serious presentations that look like neuropathy, but no diagnosis yet. He is in extreme pain. A slow, simple movement makes him grunt. But he’s a man’s man too and doesn’t want to talk about it. He is afraid.

He reads my blogs. I think in some ways he trusts me with his sick because he is so familiar, even loyal, to mine. But (here comes the big but), I blew it. I reached out to him and he timidly responded and I didn’t know what to say when he said he was scared. I had this little space; this tiny little opening in the door; totally enough space to stick a bare foot in and I blew it. I’ve spent a year and a half judging people for what I considered either their inconsiderate and cold reactions, or the super dramatic reactions. I was so overwhelmed by my own judgments of how they should have reacted. Super funny that now that it is my turn I still have no clue what to say to someone when they are scared and sick and no one knows the depths of what is going on.

I think if my friend were religious I would have had an easier time. For my friends who don’t believe, there are certain things we approach together hand in hand (like funerals and sickness) and it stops us. We hit a wall. A friend of mine passed a few months ago, and my one friend was very close to him. He sobbed. He was devastated. He doesn’t believe in God or ever afters. I didn’t know how to console him without them.

 My theories and approaches to understanding these things rest on God, so I’m totally and utterly lost when a friend is struggling and I can’t go there. I don’t know where else to go. I stop. The dialogue ends. And it sucks.

I have gathered a few tidbits here. They are kind of random, but here goes:

You can’t tell someone how to react to your news. Nuff said. If someone upsets you with their way off the wall remark (i.e. You have MS? SUCKS FOR YOU). Let it go. Holding on only hurts you. Like my good friend Kristin Cifelli says, “Love is the benefit of the doubt.” Give them that. The people who said the dumbest things to me when they first got wind of my diagnosis, turned out to be the ones who were really good at being there for me.

Never say, “Oh well, it’s only…” Cancer. MS. A cold. Whatever. Rude. Rude. Rude. It minimizes something that is very BIG to them, especially if it is new. You may think you are looking on the bright side, but they will see you as minimizing their pain. I yelled at my friend when I was crying about the gauge of a needle I had to give myself (intramuscular, ouch) and he poo poo’d the gauge. “It’s not THAT big.” I went ballistic on him.

Don’t act like it is a death sentence. You don’t want to act like the person is dying tomorrow either. That could send them into some dizzying, terrifying, icky places. Places they are more than capable of going on their own-don’t feed that fire. There is enough fear in the world. We are good.

So, you want to walk a line between the two. So here is the line—I am sorry my friend and if you ever need anything, just say the word. If and when they reach out, you take your cues from them. They will lead you. I think less is more at first. Until you get a feel for what they want or need.

To my friend who is sick--hang on my friend. Sometimes the marathon is in finding a diagnosis. The hardest part may be behind you. And if you ever need anything, I'm your man. And I promise I won't blog about it.

 

 

 

 

 

I don't trust roids, only doctors who wear cowboy boots...

  I used to have this doctor who acted like having MS was akin to having a cold. My problem with this is that while I don’t want to give this disease too much credit, I also wanted some credit for what I handle on my own on a daily basis. I don’t want a medal, but yeah, I kind of do. I won't say his name, but I will give you a clue-he practices in Summit.

He used to talk to my husband about me and my diagnosis like I wasn’t in the room. He wasn’t accessible. I didn’t trust him. One day I went home and sat in my computer chair and prayed that God would lead me to somebody that would help me. I didn’t need a cure as much as I needed compassion. In the name of the Father, The Son, and the Holy Spirit. Amen. With that I googled ‘best MS doctor in new jersey’. Dr. Gregory Anselmi came up on the cover of the New Yorker or some magazine.

The problem with doctors who have notoriety is that there comes a waiting list with that fame. And, if you wait it out, sometimes you will get an associate at best. They are too famous for you. You talk to their ‘people’. But I called anyway and made an appointment. I wasn’t sure why I was going, but I didn’t think there was anything to lose either-as long as they took my insurance.

I went to him after work one night with my sister. I was totally unsure of what I was going to say. If you waltz into a doctor’s office and explain you thought your other doctor was an asshole, it is off putting. Who says I won’t say the same about him?

He walked in as I was trying to conjure up an opening line. “Hi I’m Jamie, I have MS!” or “Hey doc, I prayed and God led me to you so here I am!” The door opens and my gaze rested on his black leather cowboy boots. I was fascinated. I was disarmed. I don’t remember what catchy opening line I went with, but I was there for 3 hours.

His father is on the board at Mount Saint Dominic, my alma mater. His sister went to MSD. His parents go to the same church as my BF’s parents. All the stars aligned when I found this man, cowboy boots and all. When I crawl into his office on my worst of moments and I get all whaaaaa on him or me or whoever it is those cries are meant for—he quotes me. He reads what I write. He remembers what I say in these blogs, which is so hyper annoying when I want to feel bad for myself. BUT, when I get over it I realize how genius it is. He quotes me to stop me from going to those poor me places, but he does it in a way where he is also giving me confidence in my writing. He builds me up in so many ways.

I had to make an emergency visit with him yesterday. Most of the time when I’m with my doctor, I feel strong. Or stronger. It is such a relative term. The people he sees, the ones next to me in waiting rooms are so frail. So visibly sick. Most of the time I feel like the honor student in his classroom. And then there are those times like last night when I crawl into his office. Coiled up. The times when he almost literally picks me up off the floor and maneuvers my body because no matter how hard I try, I can’t will it to.

Those are the days I feel small. But more importantly, those are the times that I feel safe. There are very few people I would let see me that way. Very few I would let see me physically fall and cry. Emotionally I let people support me. But in the physical, I am very embarrassed by these moments of sick me. It isn’t cute or sexy or smart or young. I look crippled in the ugliest of senses and I keep people away. Conversely, I think there are very few people who feel safe with their doctors. What I have is special.

It's almost like my body holds on until I get behind his door and I collapse. He put me on a chair and pulled it to his. He hit my reflex thingy in my right knee and my leg was sent into hyperactive jerking motions, my thigh muscles were contracting and crazy spastic. Every muscle in that leg was quivering.

Moments like these scare the bejeezus out of me. It is an out of body experience when I watch my body react in these ways. It is like I’m staring at someone else. I hover over myself and think, This shit is scary? I feel so bad for this woman! To balance the heavy and the fear I grabbed that reflex thingy and hit him hard in the knee. He didn’t laugh. He said I’m in a flare-up. Time for IV steroids at home for a week to stop the inflammation. I told him no. They hurt my body more than the help. I made a vow in September that I would never put my body through that again and I’m keeping it. Anselmi totally respected my choice.

I just want to say this about doctors and choosing a doctor. Besides that other guy being smug, this was a red flag-he didn’t give me any options. He gave me, “You have MS you will start Avonex in a couple weeks.” A good doctor gives you options. Anselmi sat and talked with with me for hours about all the different avenues we could take. He sent me home to think about it. He was caught up, he knew his stuff and didn’t tell me what to do—just gave me the options. When I ask him what he would choose, he tells me. 

For the record, I thought there wasn’t a good reason to see another doctor, but thank God I did. The smug doctor who acted like I had a cold never thought to order an MRI of my spine. Anselmi did. My spine is the worst part of my disease-if I hadn’t been treated for it I would undoubtedly be in a wheelchair today. If you are sifting through doctors and need help—this is a good place to start distinguishing. A good doctor lays out all of your choices. The second element is cowboy boots. All good doctors wear cowboy boots.

PS-In happier news, my blog was featured in TypePad's Blogs That Rock! It was so much better than roids! Thank you Type Pad peeps.