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." -__-