Archive for the ‘wellness’ Category
Who Are You?
Posted on: February 15, 2012
- In: rheumatoid arthritis | spoonie | wellness | Yoga
- 1 Comment
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?
Dog Days of Summer
Posted on: August 10, 2011
- In: rheumatoid arthritis | spoonie | wellness | Yoga
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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!!
Why does she walk around like that?
Posted on: July 22, 2011
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Okay. Today wasn’t too bad, relatively speaking. I mean it’s not over yet, still waiting on class to start for this evening, but beside some RLS symptoms, aches in my hips, knees and ankles, I didn’t have any breakdowns.
People at my job tend to get on my nerves a lot lately, but I have been empowering myself to not think about their negativity, off-beat comments and overall drama and to just think about positive things. And ya know what? It has been working. I don’t stress about it, I let things go and move on. Due to the RA and many other chronic illnesses and symptoms I have throughout my days and life, I have noticed that I end up being a doormat for most people’s’ harsh and just down-right mean antics. I have had to fight through people thinking I am a snotty brat because I happen to walk around with what appears to be a stick up my behind. However, I learned a few years ago that I do in fact walk around like that BUT it’s not because I do have that stick lodged up there it’s because I have constant joint stiffness, RA symptoms, scoliosis and chronic pain and fatigue. Frankly, I’m lucky that I’m walking around any which way (since my parents were told that I would be in a wheelchair by age 6).
I’ve recently learned (mostly the hard way) that I can’t hold normal friendships. I mean, this has been true my whole life but I convinced myself that it was just “them” and not me. unfortunately, like most people with chronic INVISIBLE illnesses I look normal upon the first meeting and because in my head I passed that initial meeting, I feel the need to continue trying to act normal. It’s not that I don’t tell me I have RA, it’s just not something that needs to be stated upon initial (usually painful) handshake.
Anyway, point! I have been working at my current job for 4 1/2 years (ugh) and the place really does have excellent employee retention, therefore these people I share my 40 hours a week with have known me for that long. You’d think they’d all know about the RA, I mean I do talk about, it has been of conflict at one point (that’s another story), I do take time off for Dr’s appts and infusions…but yet of the 18 other individuals I see daily (and some after work to hang out) not all of them know or even seem to understand and care that I am in constant pain and exhausted 99.9% of the time.
Doormat. Sure, I do what I can to stay up on office gossip and take time for chit-chat and regular banter, but lately I just can’t do it and my exhaustion and symptomatic body comes across as me being a snotty, stick-up her bum, b-i-t-c-h. I don’t have the energy to defend myself anymore so I let it fly. I just let people talk behind my back, say how socially awkward I can be at times or how royally bitchy I am because I know the truth and hope one day they understand.
Believe me, I am not using RA as a “free pass” to act a fool and actually be a snot but that seems to be what is thought. And here, again is where forcing myself to think positively works. I smile (usually on the inside because my jaw hurts) and think that things can change in the future and for right now, I have a man who loves me, understanding and empowering family members and some good friends that do accept me…stick up the booty and all. Really? Can you ask for much more…well beside a cure for these crappy chronic illnesses?
Moody & Miserable
Posted on: July 21, 2011
Boy oh boy! What a summer it has been. I started this blog a few months ago with all intentions of entering something at least once a week, if not more so (I know, that’s what every new blogger says). But this summer has proved to be quite trying for me. I mentioned before that I enrolled to take full-time classes for the entire summer semester (10+ weeks) while continuing to work full-time…and plan a wedding (Save the Date 8/18/12!!) and well, ya know, try to stay as healthy as possible with RA, CFS, fibro, scoliosis….
Here I am half way thru week 9 of the semester. I try not to think about it because I honestly don’t have an answer as to how I made it thus far. I apologize to those close to me, especially my fiance because these 9 weeks have brought out my not-so-pretty side. I really only cried about twice, mostly because I don’t have the energy to breathe let alone actually create tears and cry them out!
I like to hope that it will be worth it in the end, by maybe getting a great job with less hours, less travel and less stress…but I think I choose the wrong degree to pursue. Oh well, once this summer semester from hell is over (and I do have to remind myself about 50x a day that it WILL be over soon) I will graduate May 2012, get married in August 2012 and *hopefully* get to begin our lives together.
Sounds kinda like a fairytale though, right? Education, marriage, family, happiness. I have to constantly wonder…can all of this be attainable with a chronic illness? And by attainable I mean as comfortable as possible with as little flares, breakdowns, stress, and tears. Days like this I find it very hard to believe that it is. For one, I plan my month around my orencia infusion. Today, after going to an 8:30 am meeting for work, running into the office to get as much work done as possible for a few hours, taking my vacation time to get to my infusion appointment, drive in 95 degree weather into the city (which is my nightmare) with just enough time for the infusion before class to be told that they must have messed up the schedule and they can’t see me today. BUT I can come back Friday. Really? Because Friday doesn’t work for me, I have a job and school work and other responsibilities that giving up more vacation time at my stressful busy job is just not in the cards for another day. Technically I could have waited 3.5 hours for them to fit me in at the end of the night…but alas I have my one and only in-class final exam tonight at that time. Boooooo.
I left. I fought back tears. Paid the parking lot attendant and headed downtown to school. I wanted to kick and scream and cry because it’s not fair…but I don’t have the energy. And seeing how I’m already 2 weeks late on the infusion…I don’t want to send myself into a flare in the 97 degree weather with a heat index of 105. Just then…the fatigue hits me like a mac-truck. And to walk six blocks to take a test now.
I’m sorry. I had to vent. On top of that I get to deal with co-workers brushing off the severity of my illness to talk about how bad they are doing. Can I just live on a pain-free deserted island please? Can you tell that this is seriously my summer from hell? Moody and miserable is pretty much my daily status. Hopefully that will change soon. Again, I apologize as this entry really didn’t promote health or inspiration…but as superhuman as I try to be, I am still just human at times.
This is an amazing story that I felt I needed to share. Beautiful and said perfectly.
Look into the future…
Posted on: June 21, 2011
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.
My 1st Arthritis Walk
Posted on: May 18, 2011
I participated in my first arthritis walk this past Sunday. It was the one in battery park in NYC. I had signed up with Dustin only about a week and half beforehand but am so I was able to go.
The weather was rainy and cool but we finished. My back and knees hurt and I won’t lie, I went home and took a two hour nap. But we raised about $500 between the two of us so I think that was worth it!
I have been feeling a little better since my infusion last week. It helps me get through the days. I’ve made a conscience decision to cut out as much gluten, dairy, coffee, and nightshade veggies as I can and increase my intake of fresh fruits, RA friendly veggies and fish. I also started regularly taking some vitamins that are recommended for RA.
So far it’s been 4 days. Not as bad as I thought. I really just want to keep it up and get my pain under control. I only have one life, so why not try everything I can to help myself right?
Infusion day
Posted on: May 13, 2011
Man, I am not having a great day. I am in a lot of pain everywhere. Days like this make me feel like I can’t have the life I want to have. Why does this happen to me?
I’m due for my orencia infusion. It scares me that my body seems to know that it’s time. I NEED the medicine. I actually even took some ibuprofen today. I rarely take anything additional. It’s like I like to prove to myself I don’t need it. Like I’m normal and can make it through the day with not additional meds. And when I swallow an ibuprofen or muscle relaxer or other pain reliever I feel so defeated.
I’m sitting in the hospital and just feel tears welling in my eyes. My day isn’t even done, I have class downtown later. Of course I put up my defense mechanisms and act like I’m fine. Pain on a scale from 1 to 10?? I said 7. I don’t know what that means. A 7?
Today I just want to curl up and cry. If that’s me feeling sorry for myself then so be it. But I don’t. I’m just going to go to class tonight and get up for work tomorrow morning. I’m working towards my goals and just have to push through this pain.
Power Yoga
Posted on: May 12, 2011
- In: rheumatoid arthritis | wellness | Yoga
- 3 Comments
Image via Wikipedia
Yoga has become a new part of my life. I try to go at least once a week. I’d loooove to go more often but with working full-time and going to school full-time, I just can’t make it.
However, I went to a class last night: Hot Power Yoga at a new studio that a previous teacher of mine opened. The room gets heated to about 95-100 degrees and the class lasts about 75 minutes. It’s an intermediate class so its meant for mixed levels, but there was only another student and I in the class.
And what are the odds, the other student has rheumatoid arthritis? I had told her at the beginning of the class that I have RA and she seemed relieved and thanked me for sharing that because she also has RA. She is new to yoga so I shared my experiences with her and she seemed to be excited for what lies ahead.
This yoga teacher always says “If you can’t make it there, fake it there.” I love it because it just goes to show in yoga or in life you shouldn’t take yourself too seriously. You do what you can do with the body you are given, some days are better (or even some hours in my case) but if you are doing the best you can, you aren’t cheating yourself.
The teacher also says that you should not worry about anything going on off of your mat. Don’t look at your neighbor or what anyone else is doing, this is your practice. I love this advice because it also reigns true in life, just because you aren’t doing what someone else is doing (for whatever reason) doesn’t mean you aren’t doing the best you can for yourself and body.
My body is feeling pretty well today but I know the great feeling I have after a yoga class will fade. I’m not discouraged, just hopeful that the more I try and more I do, the better outcome I will have.
LiveLoveLaughRA 