A Little Known Addiction

As I am going through the month long preparation to start my field placement with the MICA (mentally ill and chemically addicted) population, I'm left feeling a pull to blog about an VERY common addiction. No, not pain killers...grrr... but the more common and less talked about addiction to food, particularly unhealthy, processed, fattening, comfort foods... and comfort being the operative word here. I preach about my dedication to the raw food, organic, vegan lifestyle (when permitting...I am not obsessive), but I understand how truly, truly, truly difficult it is for many individuals, no matter how strong their desires are or how dire their situations are, to maintain healthy lifestyles. The main reason why I believe it is very simple for me to make good choices is because I am emotionally stable and self-aware, using food as fuel and medicine, although that was not always the case for me. I was never addicted to food, but I did use food to fulfill a need that food should never be used to fulfill, and that was my need for control. After over a year in therapy, I reinvented my relationship with food, and if any of you out there who read my blog are struggling, I highly suggest some time with a mental health professional and/or some self-reflection on your own. It is nothing to be ashamed of and is a very common issue, so please never feel embarassed or ashamed, and do something wonderful for yourself by looking deep within and changing the relationship you have with the foods that nourish you and prevent and cure disease. It is possible!

I am always willing to be a listening ear, too, so feel more than free to contact me if you are struggling.

But I look So Good?

**Pre-RSD and Post-RSD. Not much of a difference on the outside and much healthier post-RSD on the inside. Obviously, the photo of me in my UM running gear is the pre-RSD me!

That infamous statment, "But you look so good..." If I had a dollar for every time I was on the receiving end of such a compliment, I would be living in a studio apartment on Miami Beach, but despite the frustration many of us illness warriors feel when we hear that statement, I find it to be flattering because it is reflective of my hard work and daily pledge to sustain health.

I am often asked, "How do you stay so thin," especially since my exercise routine is down to a few minutes of yoga a week and my lifestyle is more than sedentary, but it's not about being "thin," it is about thriving in a less than desirable situation. Because of my looks, not only is my illness invisible, but I sit on the fence and move back and forth between the "disabled world" and the "abled world," needing special accommodations but looking like the me of yester-year.

Basically, it comes down to the fact that I choose health. I don't drink, I don't smoke, and I practice a raw, vegan, organic lifestyle when permitting. Often, we make these things seem so difficult, but they truly aren't. Just as I worked hard to get into graduate school, I work hard at creating health. It really is that simple, but it takes some serious honesty with yourself, 100% self-awareness, and a true, true desire to be healthy despite the obstacles in your life. This disease is no excuse, and I don't buy the story when it is used as one. I am in the driver's seat of my life, and therefore, I've started down the highway of health making no stops and never turning back. You can, too.


Oh, and speaking of health, I am addicted to LUSH's natural beauty products. They are made from organic, cruelty free fruits and veggies and are environmentally friendly and all natural for you. You MUST check it out! http://www.lushusa.com/shop/

Raw Traveler

I'm sure some of you are wondering how I stayed on my diet while on vacation, and while I am not a stickler for perfection, I spent my vacation still eating raw and organic when possible. So I wouldn't withdraw from my delicious green juices, I ate as many salads/greens a day as I could, and before we left Miami for West Palm, we stopped at Whole Foods so I could get some organic fruits and veggies. In my suitcase, I packed organic nuts, seeds, and other snacks, and with that, I successfully kept up my healthy lifestyle :-) Pretty simple. I usually ate fruit and nuts for breakfast, a big salad for lunch, and a big salad for dinner with snacks of nuts and seeds and tofu. Oh my!

Home Again

Miami was steamy and hot, just as I like it! A fabulous stay with my girlfriend and former housemate, Stacy, full of laughs, gab sessions, and shopping was sandwiched inbetween two very painful traveling days acting like little book ends to remind me of what my life is really like in case I forgot during my stay in Miami and in Stacy's hometown. Being in Miami again made it all the more clear to me that either A. I must move down there ASAP and/or B. I must visit more often than every year and a half. That place stole my heart and the heart of my fiance, which makes for an easy relocation when we are both done with our schooling here in NJ.

Nothing new on the RSD front right now, but I did get accepted for the internship as a group therapist for the mentally ill and chemically addicted. There is a lot to be done for the placement in September, so I receieved a rather large packet to get started on right away.

I'm off to my bi-weekly massage, which is right up there on the "things that keep me in less pain" list with opiod medications. My back is a mess thanks to this illness.

My Old Stomping Grounds. University of Miami.

Miami, My Second Home!!!

Ahhhhh yes, life is much easier with my pain patch on :-) I'm not sure if my pain has progressed in the past few months, but once I took the patch off, I couldn't even sit on the couch all day with my feet elevated and be comfortable (even though I still kept going, going, going and enjoying my life anyway). While my quality of life has not increased with the use of the patches as far as what I was aiming for, which is the ability to stand for longer periods of time, I am able to sit comfortably. I'll take it for now!!!

Yesterday, I had a massage appointment and spent the rest of the day with my fiance and my pup laying out by the pool, shopping at Whole Foods, laughing, loving, and once the air cooled, I accompanied them to the park so they could go for a run and I could read at a picnic table with the fireflies lighting the air around me. Lovely :-) How fun is my life?! Tomorrow, I am off to Miami, my second home (I went to the University of Miami for undergrad), to visit my girlfriend who is home on a month leave from the Peace Corp. Traveling is painful, but I'm used to it being that I spent 4 years of my life flying back and forth from Miami to NJ.

I may get frustrated sometimes, but who doesn't??? I'm a 24 year old former athlete who was planning on running 30 marathons just like my dad when my pain hit me. I had to quit my college cross-country team, move back home with my parents, and figure out how to start anew with this illness in my life. A true athlete can never take the athlete out of herself because it runs through our veins, it is in our blood. It is only natural that I feel frustrated when treatments fail, but that is life. You live, you learn.

I'm off to visit my grandma and spend the rest of the day with Pat and the baby.... oh, and finish packing!

**EDIT: Honor Your Feelings. It's OK!

**EDIT: My pain has reached a level where I cannot function on only norco and ultram alone. I called the PM office and asked if I could stay on the lowest dose of the patch (12 mcg/h) AND four norco a day plus the 200mg of ultram. They agreed that that would be a fine idea because the lowest dose of the patch is enough to take away some extra pain while also leaving me with some mental clarity. Anything above the 12 mcg/h gives me that "high" feeling, and while some individuals spend their whole lives chasing that feeling, I HATE IT and cannot function at the graduate school level. For now, this should be enough to keep me sane until I see a pain management doctor who specializes in RSD. It is amazing how everyone with RSD is different and requires different combinations of different pain medications tweaked here or there to function. For example, my body takes vicodin like it takes advil, no side effects, no "high" feeling, etc... but vicodin makes some individuals violently ill. The human body is incredible.

Thank you, everyone, for your support! Don't you worry about me. I am 110% fine, although the hour after my PM appointment (when I wrote my blog post), I was despairing. After 1.5 years in therapy and 4.5 years in chronic pain, it is super important for me to honor my feelings, whether they be frustration, despair, or loneliness, because pretending like all is fine in a situation that really does suck (let's be honest with ourselves) is very unhealthy. Pushing down feelings creates blocked energy in the body and creates an environment for depression, anxiety, and unhealthy coping mechanisms to flourish. I believe it is extremely important for all who read my blog, especially those with RSD, to know that I am not immune to feeling low, but it is what I do with those feelings that make me resilient. I take an hour to cry, kick, scream, and talk it out with my awesome parents, my fiance, and my furry pal. I have consistently been praised for my strength, and while this is super duper flattering, it is important for you to know that I am not blissful all of the time, which is why I wrote my last blog post. I react like anyone would react to failed treatments and bad interactions, but it is what I do with my reactions that have earned me praises of strength and resilience, which I always appreciate (thank you!)!!!!

We must honor our feelings, and doing so does not make us weak or falling victim to disease... it makes us strong because it is far easier to stuff down your feelings than it is to sit with them for some time and then let them go.

This sucks, people!!!! It's OK to feel it!

My dad and I are on the hunt for someone who works with RSD patients consistently and who is not afraid of giving me what I need in order to finish graduate school.... because I am not falling victim to this disease... my life, my goals, my dreams will not fall victim to this disease. Mark my words.

That Sucked

My pain management appointment went down in flames, and I left there shocked feeling as if I just wasted precious time with someone who is not willing to treat me as an individual. He pushes the SCS and doesn't perscribe oxycontin to anyone. It seems these local pain management people work with chronic backaches and migraines and not with a disease that is worse than end stage cancer pain with NO END. Think about that... 24/7, 365 days a year of "worse than end stage cancer pain" pain in all four limbs. I'm not willing to drill holes in my spinal column and have a device implanted in my 24 year old body just yet, especially without trying medications like methadone and oxycontin, so it seems as if my dad and I need to find a pain management specialist who works specifically with RSD patients and drugs like oxycontin and methadone on a daily basis.

Now, I'm taking my norco every 6 hours and 200mg of ultram in the morning... that is the same amount of pain medication I was taking when I had to quit my field placement because the pain was too severe. Wow, I really made progress, huh? It's difficult not to feel defeated when school is a month and a half away.

Strawberry

I haven't been feeling so great lately, physically or mentally, so I have been employing lots of learned, healthy coping skills and trying to stay afloat in this search for a cure, or at the very least, some real pain management. I'm heading back to my pain management doctor early, this Monday, because I am not a fan of the pain patches. I cannot sacrafice that much mental clarity for a medication that is barely increasing my quality of life. For some, sacraficing mental clarity for pain relief is a great option, but I'm a graduate student, and there is only so much mental clarity I can lose before I become useless in my tasks. You can't f*ck around like that in graduate school, to give it to you straight, because it is difficult enough as it is to get all of that work done without large amounts of opiod medications.. this is a conversation to be had on Monday with my physician. Oxycontin or Methadone seem like good options now, since I am more opiod tolerant than I was before, and at 108 pounds of muscle, it's better to be safe than sorry.

Does a little piece of you die when yet another treatment fails? Yes, absolutely, and after 4.5 years of failed treatments, it just becomes more difficult to grow that piece of you back. A lot of energy every single days goes into keeping yourself sane.

I interviewed at a new, possible field placement for this fall that I absolutely adored. It is an outpatient behavioral health program, and I would be working in the adult day program for the MICA population, which translates to mentally ill and chemically addicted. I'd be doing case management and therapy groups, and one group happens to be a "wellness group" focusing on things like diet and nutrition. Right up my ally :-) Cross your fingers for me that I get the position!

June Pain-Blog Carnival

Yay! I've been featured in How To Cope With Pain's June Pain-Blog Carnival! Here's the link:

http://www.howtocopewithpain.org/blog/1076/pain-blog-carnival-june-2009/


Here is the link to their mian site: http://www.howtocopewithpain.org/

Update

I haven't updated since I got the news about a week ago... My bloodwork didn't change much on that low dose of prednisone, which only means that I cannot go on Enbrel or Fosamax right now because of my low Lupus compliments. Both of these medications can exacerbate any sort of atypical Lupus, Lupus, or other connective tissue diseases/illnesses on the Lupus spectrum, and because my Lupus compliments did not change, I can't rule out any of those illnesses in combination with my RSD. I started taking Plaquenil, which is an immune suppressant used when medications like Enbrel cannot be used for reasons like mine. The only downside is it takes near two months to start working, so I will get my bloodwork done again and we will go from there. I might just wind up going on the medications in two months. This is all cautionary and doesn't mean I 100% have a Lupus like disorder (my Lupus factor is negative BUT my Lupus compliments are low, which occurs in people who do have the illness) since I have no other signs/symptoms, but these precautions need to be taken just in case... This could all just be an immune response from the RSD. We shall see.

Oh, and the reason why I haven't updated is because of how crappy this patch makes me feel as my body gets used to the higher dose, 25 mcg/h. It takes me about three patch cycles to want to get up off the couch. Add that with stinky RSD style PMS, and I am down for the count.