LiveLoveLaughRA

Tomorrow I graduate from grad school. Three years in the making and I am absolutely not the same person I was when I began this program. I mean, I’m not the same person I was when I moved to NYC almost 5 1/2 years ago but these past 3 years I have seen a major difference. In a good way. I couldn’t be happy with the change, as if I stayed the same person I was when I started this grad program, I would be somewhere else in my life.

Not only have I seen a change in the past 3 years, the past few months have really made a difference for the best. I have gotten “healthy,” relatively speaking. I have been into yoga and eating “right” for years but since January, I kicked it up. No, I’m still a work in progress but I feel great. The 40-days to a personal revolution program started me off right after the new year and the sprial since then has been amazing. Of course I slip up still and woud still like to make some changes with my nutrition. But, after working briefly with a holistic nutritionist I know that it is a work in progress and a trial and error learning process.

2012 is turning out great. I hate to put so much into a “year” but with graduation, our wedding and such a personal health revolution (that has spilled over into my fiance), I can’t help but be excited. I know everything can be taken away in an instant and i try not to live in the future. So, that’s why I am living now. I choose to fill my day with good nutrition, exercise and positivity.

Tomorrow I grad…

Week six. It went by fast and I feel like I could keep going forever. It really has been a transformative program and I feel like I am just braising the surface.  Our graduation is this friday. We have to present our “manifestations.” A few weeks ago my manifestation would have been quite different but today, right now I am determined to move forward with my life dream of opening a wellness center filled with yoga, nutrition and life coaching.

We had to do an exercise from the book “Living Awake” by Landon Carter. The general gist of this exercise was to list words that describe who we are. My list ranged from daughter, sister, Iphone addict, rheumatoid arthritis warrior, patient, and blonde (just to name a few). After dissecting our list into those things that we either “have,” “do,” or “be.”  Then the part that blew my mind…we were to cross out all the things that would still make us…us. Like I would still be me if I wasn’t a blonde or a fiance or even a sister. I was ok with those things being crossed out. But then we were told that every single item on that list should be crossed out.

What?

How can I be me if I am not a person with various chronic illnesses? I was born with them…I never knew myself as any thing different…No, I can’t cross that out…

But I did. Crossed off the list. I would still exist.

And there it lies. The “attribute,” the “thing” that keeps me from being me. From thriving. From doing what I am passionate about without worrying about failing. I may have always been the girl with RA, the girl with swollen knees, bulging knuckles, uneven hips and shoulders, with low energy; but how could I let these things define me? After all, we are all just a bunch of atoms.

I realized that the fear of failing due to my illnesses has always been a crutch. I am terrified of becoming a mother because I might not be able to do it “right.” I am scared of becoming a yoga instructor because I just may not ever be able to get up into handstand.

Well, that’s not good enough anymore. My life is passing by and I can’t only and always be defined by things like “masters student” “patient” “advocate” and “reality tv lover” It is a tough thing to process and I am still making considerations in my head…but that’s all it is, considerations, excuses, blocks to hide behind or use to a particular advantage.

This is clearly only the beginning but I have never felt more excited or had such a rush.

Who are You?

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Cover of "40 Days to Personal Revolution:...

Cover via Amazon

I am on Week 3 of the 40 Days to Personal Revolution by Baron Baptiste. Last week we had to write “our story”  You know, the one that keeps playing in your head, maybe its good, maybe its bad…

At first I, like many of my group-mates, were opposed to this and terrified. But we completed this task and shared it with our buddies. I decided to share my story here. It’s not complete, but for the most part explains my current thought process and ways of living today.

“I have never been a healthy person. From the outside I don’t look sick but on the inside I have been fighting a chronic illness since birth. I have been fighting my whole life to keep up with my outside; that I don’t look sick. Throughout elementary school and high school my parents fought the Board of Ed in order for me to have accommodations that I needed such as having a second set of books at my home so I didn’t have to carry them all on my back; extra time passing in the hallways between classes so I could use the elevator if needed or take extra time on the stairs because I couldn’t keep up with my peers fast pace, and being allowed extra time to take written exams so I could rest my hands between questions. All of that while I tried my best not to look or act sick in front of my friends, teachers and classmates. I would rush to get to class to pull out my in-class books so my classmates wouldn’t see me getting it out. Whenever I was questioned about it by them I would either ignore the questions or make up something about forgetting my book in my locker. I did whatever I could to hide my illness and keep up the best I could with my friends so no one knew or even had a chance to question me.

I hated to admit I ever needed help and did everything I could not to ask for help and not complain or make myself look like I was different. I made it through undergrad without any special accommodations or even registering with the disabilities office at my college. I didn’t let my roommates or classmates even know there was something wrong with me all while going home once a week for my mom to inject me with medication that allowed me to function. A few close friends knew but I rarely mentioned it and did everything I could to keep up that it was never acknowledged. After dating my now fiancé for a few months, I finally let him know. He didn’t seem to be phased by the news but I’m not sure he quite understood what it meant either. 

It’s not until we lived together in a different state did he really realize the impact RA has on my everyday life. I saw me on good days and bad days and got to see first hand sitting in a chair in the hospital getting pumped full of medicine or injecting myself in our bathroom. My needing to take time off from work for doctor’s appointments left my close-knit co-workers to wonder. I finally disclosed my fight with RA to a select few after ending up in tears because a city employee called my supervisor to question why I was always so stiff and not bubbly and energetic like my fellow co-workers. It finally hit me that I am getting older and the odds of my good days out-numbering my bad days are slowly coming to an end. I had always ruled out having children of my own, and as a girl in her young 20’s I wasn’t even really concerned about it. Now I am in my later 20’s, getting married and wanting a child of my own.

I made myself into an independent person so much so that it was actually destructive at times. I pretty much fought this battle in private, dieting and exercising on my own, pushing thru pain and swelling and trying to complete my tasks at home and work with out questions and going to different doctor’s appointments without letting many people know. I hated to have to ask for help from anyone other that my immediate family. I started to become more verbal about my illness and let people know when I wasn’t feeling well. I actually found that I needed to educate people on this illness because it is not the commonly known osteoarthritis and young people do get this disease.

I knew staying active was one of the most important ways to combat this illness and looked to yoga after finding myself paying a $30 co-pay for physical therapy services that left me in the corner of some big room doing variations of cat and cow pose. I was surprisingly happy with the yoga sessions and didn’t have to hide anything. I could have RA and still keep up, using any variations needed. I had to problem grabbing a block (or two), a blanket for support or strap for extra help. I never once felt inadequate or like I was so much worse than any other student practicing with me. 

I am learning how to balance my pride and independence that I forced myself into so many years ago and accept that I do need help sometimes and it is not a bad thing to ask for it.”

It already half way thru this month! I feel like new years day was yesterday. A lot of big things this year! I’m graduating in May from my master’s program, getting married in August, hopefully going to Hawaii for our honeymoon and *maybe* trying for a baby. Thats just a few of the exciting things I’m facing, but the “good-things” ball keeps rolling for my friends and family as well, my dad is engaged, a friend with RA is due in September with her first baby after her and her husband have been trying for over a year, another friend who lost her first baby late last year is trying again with new hopes due to medication to make her pregnancy stay and other friend got engaged and moved into her new home yesterday! Again, thats just to name a few. These are a lot of good things. I’m working hard to stay focused on the present though because I feel myself getting overwhelmed thinking of whats to come.

I’ve just completed my first week of the 6-week program at my yoga studio; Baron Baptiste’s 40-days to personal revolution. This program was offered in the fall but I wasn’t able to get the time to do it. This time when she opened it up again I knew I had to sign up. There are always a bunch of excuses I can find, especially with work and school. But I committed myself to this program and personal revolution. During the 6-weeks (40-days), we have to meditate twice a day, starting at 5 mins the first week and building up to 30 mins the final week; also we have to practice yoga for at least 20 mins 6 days a week. We complete readings in Baron’s book each week, journal our thoughts and feelings and anything else, complete questions from the book about ourselves (an example from this week is question 5: when in your life do you flirt with danger?), also we are buddied-up with another person in the class that we don’t really know and we have to each call the other at least once a week (texting and emailing not included). There is also a diet part to this and what makes it even greater is that it is not strict and super structured. During the 4th week we will complete a 3-day fruit fast, but thats it besides figuring out our “temperature” (hot or cold) and either adjust our eating or make changes were needed. Of course it is recommended (and I am participating in this aspect wholeheartedly) that we avoid CATS: caffeine, Alcohol, tobacco, and Sugar. We meet as a group monday nights after a yoga practice for about 1-2 hours. Tonight will be our second class.

I swear I have been searching for a class or something of this nature for years and it was like a dream that it was dropped in my lap almost and at the best time. Seriously, what better time to participate in something so great? I’m not sure what will happen over the next 5 weeks but I have a great feeling about it. I actually walked in to work smiling a few times last week. I get up and feel a lightness to my body. The meditation this week was focused on staying present; something I really didn’t think I would have a problem with. Turns out I rarely live in the present at all. And when I thought I was, it was the unconscious presence where I am zoned out on the couch watching crappy TV and usually eating nutrition-lacking snacks. I am always thinking of the future (of course thats not always a bad thing) but I realized that is stopping me from enjoying my life, my friends, my family, my job, my home, my everything in the here and now and thinking of what I have to do tomorrow, the next week or even in the hour after I am out with someone else.

My yoga teacher always reminds us that this is our only moment. Right here, right now. As soon as it passes we won’t ever get it back. This is so true and I really have been working on making myself live this way. It’s an amazing time in my life and how can I miss it by thinking about what may or may not be coming next year, in the next month or tomorrow?

I live on an island. Like a real island that is not connected to any other land except by very long narrow bridges. It is not a luxurious island, although it does cost a ridiculous amount of money to live in a tiny apartment…but that’s not the point.

So this island, with a population of about half a million people has 4 bridges. Only. Four. Bridges. And 3 of them do not even lead into the state in which it belongs to. So there isONEbridge that travels to its own state. Is there something wrong with this picture? Apparently not, because not only do the “lucky” residents of this island (all .5 million of them) get to deal with the lack of ways in which to flee…they get to pay $12-13 a pop for doing so.

I swear I am missing something here. I was not born nor was I raised on this island so I am not as accustom to these traveling conditions as most here are. Of course it graciously provides you with the option to travel to and from it for free via ferry. And really there is not much more to say about that. No really, I can drive to the ferry (which is in a not so accessible part of the island surrounded by not so welcoming neighborhoods); pay to park my car, walking (through parking lots bigger than the mall, up and down a ton of flights of stairs) onto the boat which runs on a very inconvenient schedule into lower Manhattan (where you are then slapped on the ass and told good luck). If there are not at least fifty things wrong with that previous sentence I must be crazy.

I understand that this complaint can make me sound like a bit of a “princess” (Moi? Travel by public ferry??) But seriously? I have more horror stories about that riding that thing than I do about planning a wedding in another state with divorced parents on both sides while finishing grad school, working full time. And that yields pretty scary stories.

Back to the bridges! As if the traffic in this over-crowded city built for pedestrians is not always a nightmare…an entire bridge was shut down due to an accident (no one was seriously injured). The polite highway sign informed me that all lanes are blocked and to use an alternate route.

Clearly the updater of this sign must have had a good laugh. An alternate route? As in: your suggestion to me as I attempt to travel to a meeting for work that I gave myself over 2 hours to get to (this city traffic, man…2 hours to get some place that should take 20 mins) is that I should use an alternate route? Oh! Oh! That clarifies things. Thank you. Thank you for the laugh. My car’s flotation device is in the shop, so swimming across is out of the question. There are no exits left for me to exit in attempt to travel (along with thousands of other stranded communters) across the island, take an alternate bridge into a different state then travel around the entire metropolitan vicinity to get there. In the rain nonetheless.

Should I cry? Should I scream? Stomp my feet? Beep my horn? Put my car in park in the middle of the highway and blast Christmas music over my Pandora app?

I did the last one. Back spasms, neck pain, leg cramps and all. And you know what? I made it over that damn bridge. And only ½ hour late for my meeting! (InNew York Citytime that’s like being early!)

I still do not understand the “design” of this island. Hey! Here’s a lot of useless uneven land that used to be used as a toxic dump! Let’s cram as many people as possible on to it, charge a butt-ton of money to both live there and travel to it and instead of fix pot holes, traffic lights and street signs, just build more paper-thin new construction homes and recruit more residents!!

Yup. That is the island I call home. ButNew York Cityis my backyard, my playground. I have access to the best doctors, services and people. As long as I pay my dues and make it through that damn traffic.

And the question remains…how do you get to the other side?

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Yesterday was the Jingle Bell Run in Battery Park, NYC. I participated with my fiance and a couple of friends and their families. It was a lot of fun. Perfect weather for December. We all walked it, but a kinda wonder if I could run it. Maybe next year? I completed the Couch to 5K app last spring. I guess I should get back into it. I love yoga and running. Other than that working out is my nightmare. So in order to keep my butt moving I should at least run and keep up with the yoga.

My team (Team Live Love Laugh RA) raised about $1200 so far for the run and donations keep coming in. I’m pretty impressed. It’s for a great cause (obviously)!!  It was a much better turn out than the Arthritis Walk this past spring, but I’m blaming that on the rain. It was miserable that day and I choose to wear rain boots to walk the whole 5K. Not a smart idea, but you live and learn.

So I have a rheumatologist appointment coming up in a couple of weeks. I haven’t seen her since June. We left that off with discussion of possibly planning for a pregnancy (if I could be that blessed) next year or so. Now almost 6 months later I will be returning to tell her about the increased pains in my back and neck, extreme jaw pain and clenching and my new, super awesome (sarcassm) diagnosis of basel cell carcinoma. Boy. I feel like a ray of sunshine. But she always seems to answer my questions. And I’m hoping to switch from the IV orencia to the self injectable orencia that is now out. That alone would save some of my sanity in traveling to and from the upper east side once a month. Hopefully I’m a candidite to make the switch and if I do so it continues to work pretty well. I’ll keep you update.

 

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