Archive for the ‘rheumatoid arthritis’ Category

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.


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?

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?

Wow it’s been awhile. I feel like time moves so fast but seems so slow at the same time. This semester is coming to an end and fast approaching as with all Fall semesters are the many finals to study for, papers to write, holidays to consider, shopping for gifts, planning travel, actually traveling and trying to please family and friends without looking ungrateful, rude and selfish. I’m try to be none of those things but this darn RA sneaks up on me and sometimes just gets the best of me.
Well anyways, the whirlwind of this time of year makes me really feel what I have up against me…RA/fibro/cfs/etc. I am counting down the days until this semester is over leaving me with (I hope) only one semester left (yay!). However last week I saw a dermatologist and was told I have the “best” type of skin cancer (pending the biopsy results coming any day now). This news comes while sitting in a crowded, stuffy Drs office after working all day and dealing with a terribly busy day at work and learning (at that very same moment) that a good friend just miscarried that morning. She was so excited, her first pregnancy! I was excited for her and her husband an even felt myself getting a little “baby-fever” as well. That day was draining. There were so many other details I won’t bore you with or care to relive. Have you ever had one of those days…no, one of those weeks everything seems to work against you? That was last week for me. But thanksgiving was apart of that week bringing some family and friends together making me pull myself out of that slump and push forward. As I am seemingly reminded of often, life waits for no one, no matter how fast or slow it seems to go by.

My first night of classes for my last fall semester. Did that make sense? I don’t know but can you tell I’m excited to get this degree done with??? Honestly I really really really loved undergraduate school. Had a blast! Graduate school?? Not so much. I don’t know if it’s the type of degree (MSW…I choose this path obvi) or what, but I am just not into it. My undergrad is in Psychology so the learning is along the same line but I just don’t EVER look forward to coming to school. Maybe because I’m a little older…a little “wiser” now than I was then? Maybe.

Regardless…the end is in sight. Kind of. I will be more excited to start the Spring semester in January because that will be my LAST semester (well…it better be!). I’m doing the full-time thing again this semester but it hopefully won’t be as grueling as this past summer semester. I only have classes 6p-9p on Tuesday nights and 6p-10:10p on Thursday nights…and of course that nagging internship class. Luckily I am allowed to do it at my current job so that should knock out a ton of stress due to travel time.

Gosh. I feel like I’ve been complaining this whole time. I don’t mean to be. I feel blessed to be able to go and complete a Master’s degree. There are so many people who cannot due to illness and/or financial reasons. I may be exhausted and broke because of this degree but I am doing it and I will be so proud once it’s complete. Family and friends call me “crazy,” “amazing,” “super-smart,” “a nut-case” for working and going to school full-time while living with RA and all my other illnesses…including chroinc fatigue. I swear if I don’t sleep for a week straight after graduation this May I might believe them.

In other news…I’m like 99% sure I’m hiring a part-time wedding planner. I just can’t be stressed on the day of the wedding so I would prefer to hire someone to make sure everything runs smoothly that day. Again, I have been called crazy for doing this but the price is honestly worth the peace of mind.

Happy September!

I’m getting married in one year from today!  8.18.12 I can’t believe we actually set a date. I mean after dating for 6 1/2 years and being engaged for the past 5 years I think it’s about time. I am looking forward to it but I just hate being the center of attention. The next year is going to be crazy! Graduating from grad school in May 2012 and planning this wedding…I just hope I have it in me to do my best in all I need to get done.

I have been feeling pretty fine the past couple of days. I mean, the typical aches and pains and fatigue but I took some great yoga classes in the beginning of this week and felt great. I felt sore but in a GOOD way. Exercise is good its just really hard for me to get going.

Taking it one day at a time.

I did it! I did it! I finished my summer classes…full-time summer classes while working a full time job. Ok, I know it doesn’t sound like much but for me it is. I apologize to my fiance and co-workers, family and friends. I was a little miserable (little being an understatement of course) and not so easy to be around the past 10+ weeks. But here it is: my summer…already been to a few yoga classes, some walks, shopping and a whole lotta catching up on my DVR!

Is it weird that with all this new found “time” (and by time I mean the about 4 hours I have after work before I go to bed) I feel lazy? I don’t want to be lazy, but after working in my not so un-stressful job all I want to do is SLEEP, NAP, and SIT ON THE COUCH. Bad bad bad. I know. I force myself to yoga a couple of evenings. But when I don’t have a class to go to I feel like I want to suck up all my free time and not do a damn thing. Here in lies the reason I lose my closer friends, because I just don’t have the energy to say “hey, lets grab dinner after work” or to sit on the phone yapping all night when I could very well be watching crappy reality TV.

That makes it sound like I don’t value my friends and interpersonal relationships…which couldn’t be further from the truth. But, and this seems like a reoccurring theme in my posts, I seriously don’t have the energy and talking on the phone physically hurts me. Literally. It hurts. I don’t know why but it does.

Ok, enough. I have about 3 weeks left of my LAST summer vacation. And good things are planned! Trip to CT to visit my mom this week, friends birthday party in the city one weekend, a visit from some friends from CT another weekend and some day trip activities on some other days! And, we just bought BIKES!!! Yippie! I got a super cute cruiser that hopefully continues to be feel as comfortable as when I tested it out in the store. This actually excites me the most. I feel like a kid on christmas again! The bikes were ordered online and should be here in a few days. I can’t wait to get on it and just cruise around!!

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