LiveLoveLaughRA

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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…

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.

 

Not too much pain today, regular neck ache at night.

I’m spending the weekend in Connecticut to celebrate Mother’s Day with my mom 🙂 I didn’t tell many people I was coming up because it ends up being so crazy trying to see everyone. Over 4 years living away and we still haven’t found a way to make it easy with visiting. Not to mention allergies are making me feel terrible. But I’m glad to be able to visit my mom on mother’s day 🙂

However, celebrating this day makes me wonder if I will ever be able to celebrate being a mother myself. Rheumatoid arthritis and pregnancy don’t seem to go together. I’m in the process of researching this and deciding my path.

I spent time with my friends 2 year old. She is awesome and loves me but the lower back pain from holding her for only a few hours makes me wonder how it’ll be 24/7. I’m hopeful and grateful to even be able to consider having a child of my own.

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Hi! Thanks for taking the time to read this blog. I am currently 26 and live with my fiance in one of the boroughs of NYC.

I decided to write this blog because there seems to be a real lack of resources and support for young people living with chronic pain, fatigue and everything else that comes along with a chronic illness. I was born with this a disease that took the first 3 years of my life to diagnose. I have been told that those first 3 years of my life were stressful and heart breaking for them. Their first (and only at the time) was always cranky and they couldn’t seem to console me. In the mid 1980’s Doctor’s told my mom that it was growing pains and I’ll get over it. Going even further to tell that they should discipline me more so I wasn’t so moody.

In that time we moved from Florida to Connecticut. Doctors visits after Doctors visits and batteries of tests were done. This wore my parents down until finally an answer to their question. The answer was bittersweet. They knew what was causing their daughter to be so uncomfortable, but now to deal with the diagnosis.

Juvenile Rheumatoid Arthritis (JRA)

A 3-year-old with a rheumatic disease was rare and it took a lot of persistence on my parent’s part to get people to believe it.  23 years diagnosed and it’s not much different.

Only now I am an adult who doesn’t always look “sick.” Should I apologize for that when people are accusatory about why I’m so tired or can lift something just because I don’t look the part? Well of course not, but some people feel like they are owed something from me. That, along with constant pain and fatigue is a constant struggle for me.

I am hoping this blog, over time, provides me with the strength to navigate the difficulties of this disease and maybe some support to those fighting against the same oppositions.


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