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Posts Tagged ‘Health

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.”

Almost half way through this full-time summer semester! Word to the wise…not really a smart idea, especially if you work full-time (or at all) and live with a chronic illness. I try not to let myself stop and ask questions…like can I make it though this week or month or ten weeks of classes? Am I crazy? Well obviously there is a little crazy in us all.

I just want to be finished (hopefully May 2012). I hate that I contemplate regularly if pursuing my masters degree was worth it (both in time and money). I mean, when I started (Fall 2009) I wasn’t planning a wedding or on having a family. I just figured it would be me and my fiance (husband at some point) and we would work and go about our daily lives. For some reason I just ruled out having children for the past 10+ years. I like babies. I like kids. I just never thought I would be healthy enough to be pregnant and take care of one myself.

But as the time has passed…I think I caught “baby fever.” Don’t get me wrong, I don’t feel stronger or healthier. But I feel some want for “normalcy.” Yeah yeah. Is there really such a thing?? I’ve already missed out on so much (long-lasting friendships because I just can’t keep up, parties, travel, extra cash that now gets spent of co-pays and physical therapy) and I (with my fiance’s support) want a family of my own.

And why can’t I? I don’t even know if I can have children. I mean, I’ve spoken to my Rhuematologist and she said I should have no trouble with meds and will recommend a good OB…but I have that fear that maybe I can’t even get pregnant (I’ve never tried) because I have been on so many different kinds of medications since I was 3 years old. There really aren’t any studies on the effects the these types of meds have on the growing child, adolescent and young adult.

I am all for the holistic route and am easing myself into it once again, but I didn’t have that choice when I was younger. My parents and I just needed me to be well enough to go to school and have as “normal” a childhood. What’s done is done and now I need to look to my future. I am sure that I can have an impact positively on it. I’ve cut out gluten and have already noticed good things in my GI tract and (I think) my joints. I am jumping a little ahead of my self (maybe) as I don’t plan on even trying to get pregnant until at least another year or two. But…there is no harm in planning I guess.

I hope to gain more enlightenment on this subject as there is just not a whole lot of information out there (there has got to be a lot of mother’s with chronic illnesses right?). I will post some links that I have found to be useful in case any of you are wondering the same.

Again, there is nothing I can do but stay positive and educate myself. I have the support of an amazing man, a crazy family and a strong light inside me. If something goes “wrong” I (hope) I know I can find my way.

hospital_bed-5139

So I had my monthly Orencia infusion yesterday at the hospital. Before that was work from 8am-1:30pm then I had an appointment with my rheumatologist at the hospital. I hadn’t seen her since December! Not because I didn’t really need too but I seriously can’t believe how over 6 months flew by. Anyways, this particular was great! It was a very hot and humid day in the city (over 100 degrees at one point) but I loved it! I love all things summer…well except sunburns, pesky insects and sand being stuck on me, but other than that I think I would love to live in a year-round warmer climate.

On to the rheumi-appt: She said my progress is great, I am really taking to the Orencia. Of course when I mentioned that I have been changing my food intake, she wasn’t super interested in it, but I have learned to accept that medicine doctors are not huge fans of the natural approach. Whatever, I see results so I’ll keep doing it.

I told her that I plan on getting married next year and would like to start “thinking” about starting a family. I told my fiance that this visit I would ask so I am glad I went through with it. I was scared of a negative answer. But that turned out to be the opposite. She was thrilled! She said she can recommend Ob’s at NYU Hospital that she has worked with in the past and she really thinks I will do great! She told me she’ll ask around also specifically with Orencia although I basically know that there is no clear research out there. It will help hearing it from her and her colleagues.

She did end up putting me on Celebrex for a little bit to help with my constant neck and back pain and likes that I was doing yoga and light jogging and walking. I say was because I am currently in the summer school from hell and have no time to eat let alone exercise. My body misses it soooo much though. I will be back in full swing come the fall.  

I called my fiance right after the appointment before I headed upstairs to the infusion unit and he was so excited and happy to hear the news. We don’t get a lot of positivity around us so this was a nice boost.

Of course after I had my infusion until 4:30pm and raced to class from 6p-9m in on the opposite side of the city! Traffic gods were with me and I made it with time to spare to grab some fruit. It was Thursday and I just about made it through the week. Bronx Zoo with some Connecticut friends on Sunday?? I hope so! Enjoy your weekends everyone!!


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