They Say The Sky Is The Limit, And To Me That's Really True

Again, a painfully early pain management appointment was made easier by a breakfast of toasted-to-perfection flax toast topped with organic, natural peanut butter and organic fruit. I left early to take some time to enjoy the scenes, sunlight and fresh morning air, driving with the windows down singing along to Michael Jackson's greatest hits. The plus about early appointments is that you are in and out in a matter of 15 minutes, which is record time, and you do not have to plan your entire day around an appointment right smack in the middle of the afternoon.

Nothing earth shattering went down in that little waiting room, but my fentanyl patch has been raised to 25 versus the 12 I have been absorbing for the past four weeks. I'm excited for more relief but heedful based upon my prior reactions to the patch... a small price to pay for a better quality of life, right?! Right!

I received one of my favorite answers to an RSD question today...... "We don't really know much about RSD, so..." I had myself a little chuckle and drove off into the summer sun.

Now, I am off to get my bloodwork done. It has been two weeks since I started the prednisone, so I should know the results within the next few days. Fingers crossed!!!!!!!

Even The Best Of Us Feel Hopeless

It's Groundhog's Day over here in NJ as I wake up each morning to the doom and gloom of global warming's constant grey. Wake up, take meds, stretch, take meds, take meds, take meds, go to the doctor, take meds, sleep, wake up and do it over again with no real results, which is highly difficult for a girl who is goal-oriented and used to have no limits. I'm coming toward the end of my run with prednisone and some duplicate bloodwork to see what's what in this bod of mine, and I must say, the waiting sucks...this is when I have the most difficulty coping. In my life, I've set goals, constantly worked toward them, and attained them rather effortlessly, but this game has a different name (one that I don't care for). Just another lesson in learning to cope with life and its ups and downs. Thankfully, my super awesome support system has been lifting me up :-)

Above is the picture of a lovely, unique, and very "me" ring that my fiance gave me to say "thank you for supporting me through this tough time," which I totally love and am so grateful for. I don't need a gift to support him, but it sure was an awesome gesture <3

I Asked The Faithful Light

Thursday and Friday were days happily spent wih Pat and the baby singing along with musical toys and carrying the tunes home with me in my memory. I found myself singing one of the melodies as I shuffled my way to the shower Friday morning before meeting with my surgeon, Dr. McDreamy, once again for our every-three-month pow wow.

My pain has been quite remarkable the past few days, with the burning portion taking the forefront. Besides for the actual buffet of pain sensations one experiences in the RSD spectrum, there are certain types of pain ranging from "oh my god, I am paying for what I did yesterday pain" to "I'm in extreme pain for no reason" pain. The type of burning I am experiencing has no rhyme or reason that I can figure out, but may be due to something ominous or weather patterns...who knows. All I know is that no amount of pain killers can erase the hot, burny, stinging sensations.

I know exactly what the remedy is... reruns of The Real Housewives of NJ :-) My fiance is out for a run around my neighborhood right now, and maybe we will take a trip to the bookstore when he is done. I am in need of a new soul searching book. Enjoy your Saturday evenings!

Gosh, I Love Animals

I am just passing along some memorable passages from my favorite crazysexylife.com blog posse. Read, enjoy, absorb, ACT.


As global citizens, we implicitly understand how acts such as torture and genocide against other humans are wrong. But, I remain perplexed by our failure to empathize with other animals. Humans are not alone in our capacity for emotions such as horror, helplessness, shame, and empathy. Elephants and chimpanzees experience PTSD and other forms of psychopathology as a result of trauma. Learned helplessness has been described in victims of domestic violence, as well as rats exposed to inescapable shocks in the experimental laboratory setting. Even upon being handled, mice become distressed. Nonhuman primates, dogs, mice, chickens, and sheep demonstrate empathy. Pigs kept in isolation become withdrawn and refuse to move or eat when they become depressed. Fowl chicks separated from other chicks become anxious and depressed, and their symptoms improve when they are reunited or when they are treated with medicines used in humans. And the list goes on.
(http://crazysexylife.com/2009/extending-protections/)

Our philosophy is pretty much in line with that of the author and feminist Alice Walker “The animals of the world exist for their own reasons. They were not made for humans any more than black people were made for white, or women created for men.” It’s time we question our our self-appointment dominion over the animal kingdom and make every effort to break bad cultural habits namely, that of eating them. And when people say “but we’ve been eating meat for thousands of years” tell them that we were slave-owners for most of our existence as a species too. For thousands of years women and children were treated as property–but of course that didn’t make it right. Just because we’ve been doing something bad or oppressive for a long time doesn’t justify our continuing to do it.
(http://crazysexylife.com/2009/hetty-and-the-angry-inch/)

I Am Still Alive

It has been all quiet on the medicine front, as I wait for my two week dose of prednisone to come to an end, and I have been feeling majorly uninspired thanks to my menstrual pain coma of the last week+. Thankfully, I am coming out of it unscathed ready to make the most of the next 20ish days until it comes back again. Poo poo.

For the last few days, I have been reading my soul searching books and running to sit outside with my pup pup at the hint of a break in the clouds between popping pain pills. This NJ summer has not impressed me thus far, but I believe the universe is waiting for our pool to be done before it gifts us with any hot days... just a little cement and landscaping left.

SYTYCD is coming on, so I am off to watch it with my mommy. I'll write a good post tomorrow :-)

Sending love to all who read!

**EDIT: Prednisone & Stuck In The Victim Role

**EDIT: I just started taking my two week run of prednisone. I am on 10mg once daily for the 14 days. No biggie. :-) I just hope it doesn't make me feel as bad as those first two patches!

Illness, especially chronic pain, has an uncanny way of making individuals feel hopeless and out of control, and if you are isolated and without a solid support system, it is understandable... for a certain amount of time...

Although many of us did not do anything willingly or choose to be in the sick role, there are a number of individuals with disease who choose to stay put, rather stubbornly, in the victim role, rendering themselves helpless and draining the energy of those who surround them. If you transform yourself momentarily into a detective and look back into their past years, you will see a pattern of playing the victim in several areas of these individuals' lives. These persons often believe they have no control over their lives and often wait for someone to rescue them rather than do the work required to succeed themselves, but in believing they are powerless, they have truly become powerless. This negative outlook often, understandably so, drives away whatever support system, if any, that was in place and becomes a breeding ground for clinical depression and substance abuse.

The truth is, each of us has access to an incredible amount of power, wealth, success, and creative energy that we can choose to tap into and live our lives on purpose, or we can choose to ignore and stay stagnant in a role that becomes very lonely and predictable into the bitter end. Only us as individuals can convince ourselves, and then continue to believe, that our inner and outer resources are lacking, and in doing so, we become powerless. Some choose to stay in this role because negativity is predictable and acknowledging that we each have the power to create the lives we desire means these individuals have to put in some constantly avoided effort. This means they have to change, and change ain't easy!

Our outer worlds are reflections of and identical to our inner worlds, which is a powerful statement considering only we have control over what our inner worlds look like.

The Future Is Vegan

**How adorable is my Shorter?!?!?

"Happiness, peace, and freedom flow from nonviolence. We are all connected, and our joy is in blessing others. I don’t know how it will happen, but this I know in my bones: our future is veganism. Our future selves are vegans – delightedly and powerfully aware of the ancient truth of our magnificence. We are not shrinking, reducing, commodifying, cruel and numb people who heartlessly destroy the Earth and the sacred web of life—who have no future and have lost our purpose by stealing the purposes of others. We are consciousness, grace, kindness, creative inspiration, joy, and understanding. When light shines, darkness simply disappears without a trace. No fight is required. Letting the light shine through, breathing deeply and fully, we partake of the infinite, moment after moment.

We are all beings of light and awareness and love, born into a culture of violence, ignorance, and exclusion. We take on its darkness and fear, and the core ritual used by our culture to effect this is our daily meals, where we are forced to participate in routine killing by eating and buying the flesh and secretions of imprisoned, terrified animals. Our path to freedom lies in freeing these animals. Veganism is the feminine wisdom of interconnectedness, the spiritual and practical key to happiness and peace for all. She is our future. She is beckoning to us."

Beautiful words written by Dr. Will Tuttle that I wholeheartedly stand beside. This brilliant, compassionate man has read my mind. We will never be able to see the divine in ourselves and others if we continue down a path of hate, fear, judgement, and violence. Read the rest here if you are feeling inspired, which you should be. It's time for a HUGE shift in the way we live and treat all living things: http://crazysexylife.com/2009/our-future-is-vegan/

That Mountain You've Been Climbing Is Just A Grain Of Sand

Running off of my "autoimmune high," I spent yesterday at my fiance's house with my pup, who I never leave behind :-) The little bugger is my shadow and even a security blanket of sorts for me with this disease, which makes my horizontal days on my basement couch much easier to take when I use him as a pillow substitute. He's really comfy!

My fiance and I made our ways over to the movie theater to see My Life in Ruins, and we both really enjoyed the flick's romantic comedy set in Greece's majestic ruins and seasides. I haven't been to the movies in a REALLY long time because I don't really enjoy the movies that much... well, that is a half truth and the excuse I tell most people. The real truth is that it is painful for me to sit in those seats for two hours straight, and I would probably enjoy good movies more often if I didn't have this illness. Therefore, I only sit through movies I deem "worth it."

Moral of this story: Absolutely any and every small aspects of your lives should not be taken for granted and should be enjoyed with overwhelming gratitude to their fullest extents. I learned this too late, but live by it now, enjoying what I do have and can do as if it will be the last day I ever experience it.

BIG Autoimmune Updates

After laying horizontal allllllll day yesterday in my dark basement due to my horrendous migraine-like headaches, I received a call from my rhuematologist with the results from my blood workup. AGAIN, my antinuclear antibodies (ANAs) are high and EVERYTHING else is perfect, as if from the healthiest person out there, indicating an autoimmune response. My Lupus compliments are low, which would indicate Lupus except for the fact that my Lupus factor was negative. This is also another sign that there is an autoimmune response taking place. In order to make this diagnosis, he is putting me on a very low dose of prednisone for only two weeks, after which I will repeat my blood workup. If there are changes, he will know for sure it is an autoimmune response and start me on a drug to reverse the damage.

This is BIG. Just the results themselves are BIG because I am the picture of health. I haven't had a cold, flu, nothing in two years, and I am a raw, organic, vegan, yet my ANAs are up STILL (after a year and a half)? And the only problem I have is RSD! An obvious sign that this disease involves the immune system.

My doctor was extremely interested in these results and sounded very excited for what this could mean for RSD treatment. How incredible is it that lil' old me walked into a doctor's office and said, "I think RSD is autoimmune. I have a theory. Will you treat me," and this man agreed??!!!! Props to me AND props to him (and my parents for agreeing)!

Quick Patch Update And Pictures

**There is a farm, literally, behind my house that is selling its organic strawberries. How delicious do they look?!?!

I just slapped on my second fentanyl patch, but don't get too excited, it isn't doing any extra pain relieving at this dose. My plan is to wait until the end of the week to update my doctor so that I have been on the patch for a full week. The pain relief from the patch is equivalent to the pain relief I was receiving from my norco, so I am about par for the course right now.

On Sunday, I literally slept all day, only waking up every two hours to eat. This seems to be a pattern after several days of exerting myself. I hate wasting beautiful days...


**EDIT: After putting on the second patch, I started to feel pretty darn awful, just like Sunday. I called the doctor's office, and they asked me to "hang in" a little longer because this could be part of the side effects from a transition off of opana and onto the patch.

Happiness Is A State Of Mind

**I am wearing the patch on my arm in this picture. It is so small and clear that you cannot even tell!

Frolocking around NYC? Me? Well, my idea of frolocking anyway, which was walking a few city blocks and shopping in my absolute favorite store, Urbanoutfitters, that my father SWEARS I own stock in by now. We had a delectable vegan lunch before sunning ourselves in Bryant Park gossiping and exchanging theories on happiness and unconditional love for all living things. After the sun became too hot and we both had to use the bathroom, we decided to take the trip over to Urbanoutfitters to do a little browsing and buying. I purchased two adorable purses and a tie-dye-esque onesie that I absolutely adore (the picture doesn't do it justice. it really complimets my muscular, tiny frame)! All that sunning and shopping made me ready for another salad, so we sat on the street munching and chit-chatting about everything under the sun. A perfect day!

I put my first fentanyl patch on this morning, and the low dose isn't doing much of anything, which left me still using my norco to get through today. I'm not surprised since a "low dose" of anything is no match for this disease.. Obviously, I was in a lot of pain and am feeling the ramifications of a day off the couch, but it was sooo worth it!

One of the topics my girlfriend and I were talking about is the idea that happiness is a state of mind, and if all your basic human needs are being met, this statement is extremely true. Happiness is a choice we are given to exercise every single day, which is why someone in a situation like mine can be happier than most people who seem to have it all. It seems I have made the right choice :-)

I really need to rest. Today took more energy than I have to give, but again, more than worth it!

Oh, P.S. To save my legs so that I could enjoy the day, my parents drove me into the city, hung around, and drove me home. Incredible, right?!

Love Is All That Matters After All

I just returned home from an ungodly early pain management appointment, which Pat accompanied me to :-) It's so wonderful and humbling to always have the support of my loved ones. After discussion about my disdain for morphine and the extreme agitation it caused an otherwise pleasant girl, he decided to put me on/start me off at a low dose of the fentanyl patch. This way, my chances for side effects not worth the pain relief will be lowered...not that the opana relieved my pain at all. Substituting the opana for the patch still leaves me with my norco to take, but the goal is to eventually only use the norco for "breakthrough pain." I have no idea what breakthrough pain feels like because I am always in a steady stream of uncontrollable pain, so it will an incredible day when I just have breakthrough pain to contend with.

Still waiting on Project Enbrel.

One of the many characteristics I love about my pain management facility is that they are near obsessed with insisting psychological help should be a large part of a pain management regime based upon the high rates of reactive depression, anxiety, etc... We always seem to chit chat about this fact since they know I am in graduate school studying to become a mental health professional to help those cope with chronic pain and illness. Too bad they don't hire therapists in the facility itself. That would be key... one stop shopping.

Today, I am spending some time with Pat and the baby, and tomorrow, I am heading up to the city to visit my best girlfriend since high school and go to Pure Food and Wine to eat lunch! I can't wait!!!! Yay raw vegan restaurants!

I am having an awesome snack of freshly cut, organic watermelon and organic coconut milk to drink.

Illness Education Once And For All

Education, and I'm not talking about the kind you pay an absurdly large sum of money for to walk away with a degree that may or may not help you get a job these days
;-), I'm talking about the kind that assists and empowers you, me, and all chronic, acute, and terminal illness babes to live more secure and self-assured lives.

Several years ago, Little Miss Meek (me) NEVER EVER spoke up in regards to my needs and desires as they pertained to my deteriorating body, which created massive amounts of disappointment, shame, and offense, amongst other negative emotions. I assumed that everyone should understand what it was like to be ill and only utter the most appropriate and supportive phrases without me informing them what words fell under the umbrella terms "appropriate" and "supportive..." that is, until I placed myself into a therapeutic relationship with a licensed social worker (can you sense where I got the idea to became a therapist?).

Over the following year and a half, through much self-exploration and personal development, I pocketed a myriad of important lessons with me on the way out of her office for the final time, including how to relate to others who do not understand illness. We CANNOT expect others to know what we don't tell them. While my family and friends are super smart and ultra cool, they aren't mind readers, and if they were, I would already know my fate as it pertains to this disease. It is extremely important for your sanity and your important relationships that you take the time to explain what, for you, is the appropriate way to speak, act, and exist toward you with the illness that you have.

Take those clutzy, almost painfully offensive moments and turn them into an opportunity to educate your loved ones and even strangers. Know that you are worth the extra effort of others, and if they do not understand why what you are telling them is important, perhaps they are not appropriate for your self-saving support system during this difficult time?

Come on, chronic babes! You are worth it! Just because we are ill, doesn't mean our self-worth depreciates... it actually goes up!!!!! This is a time to become more self-assured, empowered, and SEXY... because illness can still be sexy :-)

Sun, Smiles, And Pink Eye

We took the little doll to the beach with us for the first time, only for a few minutes to introduce her to the sand and what the water looks like. She really enjoyed flying over the waves and kicking the sand around with those chubby little gams of hers! Super fun to watch. The boardwalk is lined with bench after bench, which is a total dream for a girl with RSD in both legs! Walk, sit, walk, sit, walk, sit... and the sitting didn't have to be on the ground for once!!!!

A lovely day :-)

Do You Know What It's Like To Believe?

**Here is that bathing suit I ordered in person. I really love it for its shiny, textured look, and my fiance thought it was cute, too. Well worth the 20 bucks for anyone who is thinking of ordering it!!!

The last few days have been full (to an RSD girl) and exciting, starting with the celebration of life, growth, and being present my girlfriend and I had Saturday in a tattoo shop, broken up by a coffee run, and in a park beneath the sun, sky, and thriving greenery. After she got her awesome bod art and I resisted more, we headed off to the party store, not to party, but to pick up a red and a teal balloon to ceremoniously let go into the perfectly blue sky, but not before scribbling meaningful words and phrases all over them to symbolize letting go and moving forward. We set them free at seperate times, but they caught up to one another and intertwined as if dancing some light hearted dance over the tree tops and into the infinite sky. I, of course, felt a twinge of guilt for letting something that isn't natural go off into hot mamma earth, but it was for a great reason, so I put that guilt aside just this one time.

Sunday, I drove to Pat's house in the morning, and in the afternoon, we took a spontaneous beach trip to frolock in the sand. While it was a bit chilly when the sun went in, the day was near perfect with the ocean and love nearby :-) For the first time ever, I was elated to have a handicapped parking sticker because we got an incredible spot a few steps away from the sand and the bathroom, great for a girl sipping on green juices all day.

Monday, with my pup and Pat in toe, we went down to the hospital to get my blood drawn for Project Enbrel, and while chit chatting with the woman drawing my blood, I got to thinking about random acts of kindness, or RAK, as I like to call them. Basically, RAK are not done enough, and it is a shame because they can be transformative. Imagine just 100 people in your town doing RAK each day all day long, and by doing that, they inspire 100+ people to perform RAK, too. The sad part is these acts aren't that difficult to do and take less energy than it would take to frown all day long, but yet most people ignore the selfless opportunities to make someone else smile... Hmmmmmm...

Today is a rest day for me filled with lots of green juices. I am going wild and throwing a little bit of everything in there today. My digestive system needs a huge break. Happy sipping!

P.S. Pain level today = tolerable with my many meds thanks to a lot of sitting around lately minus field. I am so happy with the decision to stop my field placement right now.