Living My Life on Permanent Vacation

What if we could live our entire life on vacation? Sounds relaxing, doesn't it?

I have spent the entire summer working like the rent is past due lol. I really enjoyed it but I am truly in need of a vacation. Maybe I could do like Stella and go get my groove back in Jamaica or the Bahamas. Or maybe I could do a nice, cozy getaway in a quaint little cottage in the Blue Ridge Mountains. Or maybe I can do like my girl, Queen La, and do an extravagant getaway in Czech Republic where I can eat rich foods, do death-defying activities like base jumping and get pampered all...day...long....ahhh *happy sigh.* :)

I think reading "Eat, Pray, Love" really has me yearning for a getaway of my own...going off and eating new things, learning new languages (just because) and getting closer to God and myself. A vacation like that would be a dream come true.

Well, reality check: I'm back at college for Resident Assistant training and classes are quickly approaching...but I still want my vacation! So, here's what I decided. I'm gonna take my vacation right here...in my imagination. I'm back in my dorm, but in my mind- my dorm room has transformed into a five-star hotel suite with a wet, tropical backdrop. I have a monkey outside of my window! The cafeteria (and this has required the greatest lengths and strengths of my imagination) has been transformed into this cute little cantina on the waterfront that serves only the BEST dishes from the best chefs. Yesterday, I had a grilled chicken po-boy (chicken patty on a bun) with a sweet tomato-y dressing (ketchup), potatoes au gratin (crinkle fries) and the freshest hand-picked, hand-washed greens I've ever tasted (Glory greens straight from the can lol). I am living large!

I have been going to sleep early and waking up with the sunrise to do my own yoga and meditations led by one of the best yoga teachers in the world (my AM yoga dvd). I may even start taking walks on the waterfront with my ereader in tow! I'm taking my time to get to places, walking around like I have a fruity cocktail in my hand and just existing in a state of totally relaxed bliss.

Sounds lovely, right? It is. I'm really enjoying myself and I'm starting to think that I'll never leave this place. In "Eat, Pray, Love," Liz Gilbert took classes in Italian just for the simple fact that she likes to wanted to learn something new. Why can't I start looking at my classes like that? I enjoy learning. A lot of successful people work, not because they have to, but because they want to do something productive. Why can't I start acting like that about my various jobs? I love my jobs on campus.

I saw a quotation yesterday that read: "Live like Heaven is right here on Earth." Interesting concept, isn't it? There's this girl at my school from the West Coast and I have always envied the way she walks around like she's at some kind of resort. I'll be like, "Hey girl! What you up to?"

She'll smile lazily and reply in a relaxed, jazzy voice something like, "Hey babe...I think I'm just gonna head to the caf...I think they have fresh grapefruits today. Then I might go the gym...and I have class in between there somewhere, so we'll see how the day goes." Then she'll wave her hand nonchalantly and slowly walk off, never in a hurry, and continue on her way. [Please let me note that this girl is not even close to being a slacker. She is my age (20) and actually started her own business last year and is preparing to bring it to another country. This girl is on POINT].

Well, I think it's time I join my relaxed friend here on the island for good. It makes things a life a lot more enjoyable and exciting. So, if you need me, I'll be here in Jamaica getting my groove back with Stella. ...Do not disturb ;)

The Beginning of a Routine

I re-started my daily injections today. I had been doing the injections during the entirety of last year, up until May- when the doctor told me (with surprise) that the medicine was no longer working because my body had built up neutralizing antibodies. I finally got on track to begin a new medication during the past few weeks, and to be honest...it's bringing some routine back into my life.

This new medication (Copaxone) must be injected once a day, everyday. Sounds annoying but I think it will be much easier to keep up with than my previous medication (BetaSeron), which was to be administered every other day. With BetaSeron, I had to schedule reminders in my phone so that I wouldn't forget if the day was an "on" or "off" day. It got pretty confusing and easy to forget (and ignore). So with Copaxone, my plan is to get up every morning, brush my teeth, wash my face, take a shower and then give myself the injection. Hopefully this consistency will become more routine than the former.

Also, BetaSeron caused some of the worst fatigue that I have ever experienced! And while I never considered myself depressed, I realize now that I am no longer on the medicine, that it took a LOT of effort to care about anything last year! Thankfully, Copaxone does not have these side effects on general health- mind, body & spirit.

And speaking of overall general health, I had physical yesterday and the doctor told me (disregarding the MS), "everything looks great!" I never thought words could sound so sweet :)

Everything (& Everyone) Happens for a Reason

Well, it's been a few days since I've updated but I just want you all to know that I am so, so, so, so, so, soooo glad that I went to the annual MS Womens' Conference! I was definitely apprehensive about going but something kept telling me that I woke up that morning for a reason...and that something also kept telling me that the conference was the reason! Needless to say, I got dressed and headed over to the venue realizing I'd either leave feeling inspired...or traumatized (lol).

I showed up and to my surprise, they had a laminated name tag ready for me as soon as I walked in! I checked-in the attendees and began to get used to seeing the tons of women arriving in wheelchairs, scooters, walkers and canes. Some appeared as young as 30 and some as old at 80+!

*Note: MS is an autoimmune disease of the central nervous system that can lead to (severe) disability over time if not treated quickly and aggressively. As of now, no medicine can stop the progression of MS, but they can slow the down rapidness of disability for awhile.

As I greeted these women, I kept a bright smile on my face and handed them their conference materials. Many of the women appeared to be just as happy as I was, some seemingly unaware of their physical conditions. In greeting these women (about 80-100 showed up) it saw that it is clear that MS does NOT discriminate. Not only was there a wide range of races and ethnicities, some of the women were clearly wealthy, while others looked like they had just wandered in off the street. The age range was also pretty significant, as well.

Another interesting observation I made was that almost all of the black women that I saw were not constricted to wheelchairs, scooters, walkers and canes. Some of them looked just as healthy as you and me! I thought that is was extremely encouraging. My dad suggested that this may be due to culture of the strong, resilient black women. Maybe most of the black women I saw should, in fact, be wheelchair-bound but their unwillingness to bend to the disease kept them walking. Either way, it was definitely encouraging to see them walking around (slowly) with their heads held high, shoulders back and glowing with grace. I definitely pray to look the same way throughout the years ;)

The event featured a chair-yoga session (it was kind of boring and couldn't feel anything) but it was still fun. I also got a free 15-minute chair massage and loved it! After the massage, the conference split up into break-out sessions. I went to the Research Update session, where two scientists talked to us about MS, the recent scientific advances and the quickly approaching possibility of an oral medication (I can't wait!).

For lunch, I went to sit at a table with all of those strong black women that I talked about. There were about 10 of us at the table, all strangers and all diagnosed with MS. We talked openly about all of our cases, and as many question that I had for them- they had so many more for me! I was surprised at how interested they seemed to be in me, until I realized that I was clearly much younger than anyone at our table...and anyone at the event. Laughing, sharing and confiding with them was definitely the highlight of the conference for me.

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So, I've still been receiving daily IV-infusions of steroids because numbness in my feet still hasn't gone away yet. Yesterday, when I went in for treatment, I ended up (unknowingly) sitting right next to one of the young black women that I had met at the conference! We talked for hours as we received our IV-treatments. She's a super sharp pharmacist from Colorado who was recently married and new to the area. She and her husband spoke with me and my mom about everything. She was diagnosed at the same time as me, last summer and has some of the same feelings that I do about things concerning MS. Meeting her and running into her two days later was such a huge coincidence...but then again, you all know how I feel about coincidences :) Everything happens for a reason...and so does everyone. I think I am supposed to know this woman, and I definitely plan to keep in touch!

Annual MS Women's Conference

It's been a long two days, but I got down on my knees and prayed last night for the first time in awhile. Woke up this morning feeling renewed...my head was surprisingly clear! And when I say clear, I didn't wake up with some kind of epiphany that explained everything that has been jumbled in my head for the past days- I mean clear as in a peaceful. No, I don't have all the answers but I have the assurance. I guess this is called "peace of mind." Thank God for humble prayer and good night's sleep.

I also woke up to an appointment in calendar that I almost forgot all about! Two months ago, I had inquired about volunteering at the annual MS Women's Conference in downtown Raleigh. Well, that conference is this today from 9am-1pm! I knew I woke up (wide-awake) at 6am for a reason! The conference will feature keynote speakers, a yoga session, fashion show and tons of networking. The MS Society invited me to come and help with registration and escorting, so I definitely plan to take advantage of this (free) invitation ;)

I have a feeling that this day is going to be very eye-opening and inspiring. I hope you all find something that makes you feel the same way this weekend! I will update soon. Be blessed!

BRING Your Own Advocate

Remember what I said about "being your own advocate?" Well, that's still true. Be your own advocate. But if you want a super strong case...bring your lawyer friend too (a.k.a. my mom, in my case).

So, I went to my appointment at 2:00. Proceeded to wait for 30 minutes (what are they doing back there anyway?) and finally saw the Nurse Practitioner. My plan was clear. I walked in armed with my notebook of diligent notes and questions I wanted to cover. As I tried to make my case, my lawyer (or mom) kept jumping in to add (and add detail to) important points that I was making. By the end of the session, my mom had completely taken over, the nurse was completely engaged and ready to help us in any way possible.

So here was my first lens (attitude): Annoyed. I was aggravated that my mom was not letting me make my case and get in and out as I had planned to. After the appointment the nurse decided to immediately put me on a I.V. steroid called Solumedrol. As I received my medication, my mom embarked across the office to plead my case to any and every person who would listen...the nurse, the other nurses, the front desk clerk and even the innocent scientists who came to me asking me to participate in a study. By the time we left the office, everyone knew my story, whether I liked it or not.

Current lens (attitude): Grateful. I left feeling annoyed, overwhelmed and aggravated. Then as I proceeded to shift my lens (as I've been consciously doing all day), I began to realize that I should feel awesomely blessed to have someone who know me better than I know myself on my side. My mom is the best lawyer/advocate-partner I could ever ask for and I only pray that other people have someone like that on their side when going through situations like this.

By the time I got home, my phone was ringing off-the-hook. The drug rep ASSURED me that my medication would be here by Tuesday- well before I leave for school and that everything will be fine. They even gave me the cell number of my person representative if any questions were to arise. As for the doctor's office- my mom turned that place out...all for me. Those people are at our every beck and call right now, and though I was embarrassed at first, I am now so overwhelmingly grateful. Sure, I have a debilitating illness...but (unfortunately) not many people can say they have as much support as I do- with or without their health.

So, I'll be receiving these infusions for three more days at most, and I'll be back on regular medication on Tuesday ("at the latest"). It looks like my life may be making its way back on track.

Thank God for my lawyer :)

Time to Practice What I Preach

So my appointment is at 2:00 this afternoon...with the nurse (or PA, to be specific), because both of my doctors are out of the office. I'm slightly upset because this is the same woman from last year who cried with me when I came in for an emergency appointment during school last year. I want something to make this numbness go away...not a counseling session!

I'm not exaggerating. My last appointment with her involved me driving 3 hours to get home because of the severe headaches and mood problems I was experiencing. When I met with her she proceeded to hold my hand and say, "I know it must be so hard," while tearing up. I began to cry too and replied..."it really is!" Haha. We sat there for awhile talking about how life sucked at that moment and I ended up leaving with nothing...not even peace of mind.

But as I said earlier, it's about shifting my lens. My positive lens tells me that I have the ability to take charge of my health and take charge of this appointment today. In my post from yesterday, I talked about the importance of being your own advocate. Well, it's time to practice what I preach and do just that. I'm taking notes now on exactly what I plan to discuss and the exact medication I need to handle these symptoms (hopefully she can prescribe it).

I'm not worried; this has all happened before, therefore God has blessed me with the knowledge and prior experience to handle it. I will update you all later ;)

It's Back

Woke up this morning to an all too familiar tingling in my feet. I tried to rub the feeling out for about five minutes, then decided I must be having what doctor's like to call "an MS episode-" my second since my diagnosis last year.

I'm not freaked out or scared. More just annoyed...I don't have time for this lol. I'm planning to call my doctor ASAP. As for right now, as I get ready for my internship, I'm just trying to change my attitude. Attitude is everything when you have a disease like MS, so I'm trying to shift my lens before I leave the house this morning to take on the day. Prayer is key.

So, during my conversation with God this morning, He told me everything will be fine. I'll update you all later. Have a lovely day!

Be Your Own Advocate

Ever seen someone go to court without a lawyer? Well, I watch a lot of Law and Order so I've seen it many times. The defendant walks into the courtroom with an arrogant swag, shoulders back and a flimsy folder (if that)...deciding they know and have everything they need to present a concise and well thought-out case, then as soon as the judge slams the gavel down everything falls apart. The defendant forgets what they were meaning to say, stumbles over their words and gets run over by the prosecutor. It's painful to watch.

That's why if you ever go to court, bring a lawyer. I'd also argue that if you ever go to the doctor, bring a lawyer. Or be as prepared as one.

Since I was diagnosed with MS, my view the the health care system has changed dramatically. In a day, I went from a friendly, seemingly all-knowing pediatrician to a much older, seemingly wiser, more hurried neurologist. After seeing him once, I was sent off on my own to give myself shots, pay close attention to my body and be truly independent. After he diagnosed me, the specialist literally told me "see you in six months!" Eight months later, it was my family who had to call to remind the office that we were supposed to be having a check-up. It was my dad who had to remind the doctor that we were supposed to be looking at the updated MRI results, while I was in this so-called check-up. It was my mom who had to repeatedly call the lab to get my test results to find out why this prescribed medication was not working anymore.

Two months later, it's me that's repeatedly calling the doctor's office, the drug company and anyone necessary to find out what the next step is. It's me that's getting on the nurses for forgetting to sign my prescription...two weeks ago. It's me that's having to carry around paper medical records in case a specialist or my school doesn't have access to them (...which is what my company handles :) ). It's me that's calling my doctor's offices to make sure my appointment still stands.

Right now, I'm reading "Eat, Pray, Love" (on my e-reader!) and in the book she speaks about how she always used to live her life passively. Even during her rough divorce, she decided to sit back and go with the flow, to avoid further conflict (her divorce ended up taking two years because of her attitude). She called herself going what she thought was the "Gandhi-route" or "Mandela-route." She laughs about this later because she points out that she didn't realize that both Gandhi and Nelson Mandela were lawyers, themselves. Point made: want to be a change-agent and make things better for yourself? Be your own lawyer.

Doctors and nurses should make us feel like we are their only patient. Like they have all the time in the world to spend with us and tell us about what's going on. But unfortunately, they don't. It's up to us to do the research, keep track of our bodies, take care of our bodies and be persistent about important appointments. Walk into that doctor's office like your own lawyer. I'm talking, a THICK notebook of your charts, your scans, notes taken on small changes you've noticed (whether mood-based, weight-based, etc.), research and case studies you want to address, dates for follow-up and a list of questions to not forget.

One thing I personally hate when I go to see the neurologist is small-talk and illegitimate counseling. My mom is a psychologist. Get to the point and tell me what's going on and what we need to do. I did not come for you to cry with me and talk about how hard things must be. This is about business.

I'm saying this to everyone, but most of all I'm saying it to myself. I've let doctors, parents and everyone else take care of me my whole life while I took a back, window seat. Now that I'm getting older, it's time I take charge of my health, because I've realized that if I don't become my own advocate/lawyer...no one will. Who knows where I would be if my family had never called to ask about a check-up in April. Who knows where I would be if I hadn't scolded the drug rep for 5 minutes today about follow-up. Who knows where I would be if my family and I followed their lead and weren't as aggressive?

You know what? I plan on never finding out where I would be. That said...

"ALL RISE! The court of Judge Jessica is now in session. You may remain standing until I say otherwise." -__-