Even In Your Darkest Hour, I'll Stand By You

 "The worst lies are the lies we tell ourselves.  We live in denial of what we do, even what we think.  We do this because we're afraid.  We fear we will not find love, and when we find it, we fear we'll lose it.  We fear that if we do not have love, we will be unhappy."

                                                                                              -- Richard Bach

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First and foremost, I want to thank my readers who donated.  Me and my family were able to pay a huge bill for my rehab back in November.  We appreciate it so much, and when I showed my mom the amount in PayPal, she cried happy tears.  So, thank you so much for being awesome!


Second, I started this blog a little over two years ago.  I follow many blogs from authors who are sick, but no one really went into detail about what life is like actually being sick.  And even though we are all different in our own right, we have one thing in common; our health.  I can write a million entries about case studies, cures, but I want disease to have a face.  Through reader's submissions, through stories of my daily life -- I want the disease to have a face, a story, a human being behind it.

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I've been eating super healthy, which is a big deal in my life because I just don't cook.  My fridge has been packed with green, with fruits and water bottles.  I've only had a few drinks in the past month, and this no boozing policy made a giant difference.  I haven't felt this energized in awhile.

The other night, I was out with a friend and I was leaning against the door frame of my car when my friend went to shut the door -- but it shut on my damn hand.  Bounced right off.  I've been in incredible pain the past few days.  I was staying at a friend's house ❤ the other night, and he gave me some Motrin and an ice pack.  It helps, but the pain gravitates from hand up to my shoulder blade.  My boss helped me get an quick appointment to get an X-ray this morning and I have a small fracture in my thumb.  MS is funny, it can flare-up with the smallest thing.  Even though my body is fine, the fracture in my hand is making my hand seriously shaky, and nuts with pins and needles.

I was watching an interview with Mitt Romney's wife, Ann, who suffers from MS and cancer.  A reader recommended it to me (thanks Shawna).  I thought it was interesting she said MS is much more difficult to deal with than cancer.   I agree with her -- MS is unpredictable and has no treatments.  There isn't much known about MS as there is with cancer.  What do you guys think?

Spring break is going on in session, but work is going really well.  However, I'm trying to look for makeup jobs again now that I'm feeling better.  I didn't want my MS to damage my reputation, so I tried to duck out for a quick minute until I felt I was ready to have a steady hand to do it again.  I have a wedding coming up in two weeks I'm working, I'm sure I'll be busy during prom season and I've been talking with a salon by me to come in and do appointments.

And one last thing... It is legit awesome to have someone special there you care about and who cares just the same about you.  Someone you can talk about life, love and hardships with.  Someone to share your day with.  Someone to go to with bad news, with good news.  I've been missing that in my life for a long time, and it's really sweet to just sit back, relax and let the positive take over.  The things coming out of my mouth lately have been super corny, but I like it.  I'm fiercely loyal and protective.  When I truly care about someone, their happiness is a priority of mine.  I cannot see someone I care about in pain, or suffering in any way, because that makes me suffer as well.

you can lose sight of it all.
and the darkness inside you

I know can make you feel so small.

if this world makes you crazy,
and you've taken all you can bear,
you call me up.
because you know I'll be there.

10 Men

"Nurses - one of the few blessings of being ill." -- Sara Moss-Wolfe

My stay at Our Lady Of Lourdes was pleasant all due to the nurses.

One woman, G, was a single mother working hard to make ends meet. She was very religious, but the kind who wasn’t pushy and made it very endearing. Comforting my mother every other night, G also sat with me in my room to watch television – her favorite, Dancing With the Stars. In the midst of my stay, G gave me a bracelet. The bracelet has wooden squares each connected on a band. The squares are beautifully painted with religious icons.
“Someone needs to watch over you while we aren’t here, honey.”

The woman who ran the nurse department in rehab was very close with me. Instead of taking breaks in the cafeteria, she would sit in my room with a tray, prop up a chair and watch American Idol. We would talk about my friends, about life, about everything and anything that didn’t have to do with Multiple Sclerosis. She told me that I was such a great patient to have; all of the nurses would try to schedule their shifts to be on my part of the floor.
Though, my favorite was K. She was a free agent from the south, lending a hand at the hospital for a few weeks. The second time into my rehab, it was my darkest and hopeless stay. One night, I wheeled my chair out into the hallway to get “air” and she asked me how I was. Breaking down into tears, I told her God was punishing me, which this was my entire fault for things I’ve done. My family was suffering because of me. My future was up in the air; all I wanted to do was go back to college.

“You prove those doctors wrong, ya hear? I know you got the strength of 10 men in there,” she said as she comforted me at the nurse’s station.
“I want you to go to bed tonight with a dry eye, wake up in the mornin’ and think of all the wonderful things you can do with your life.”

Even though I left the hospital still in a wheelchair, I began planning my future – chair or no chair. I would help others, go back to college, respect my family and stop with the self-loathing.

Happy (belated) nurse appreciation.

UPDATE
This post is now printed out and hanging at the nurses' station. Thanks gals!

Everything In It's Right Place

"The Persistence Of Memory" by Dali


I feel like I have a lot of personal work to do. Working as hard as I possibly can in school, I’m doing extremely well. The staff at Drexel is impressed with me, and that makes me feel a sense of accomplishment. I’m being placed into an excellent co-op program at a top hospital in Philadelphia, where I’ll be following doctors around with a clipboard. Best part – I get paid very well. I decided to stay with Drexel University, even though Temple did everything they could to tempt me to attend their school, but I thought that experience trumped what Temple had to offer.


My moving into my own place is going smoothly, even though my father is pulling every guilt trip possible to have me move back home and stay with him. My heart wants to, very much. The love I have for my parents is stronger than ever, especially with my father. We always had our differences. Plus, I’d be saving money if I lived at home. However, my head tells me moving on my own is the smartest decision. I’m 28 years old, I need to live on my own without relying on roommates, take responsibility and the thought of living closest to Drexel is something to look forward to.

On the upside, my mother is excited about it. She, too, wishes I would live with them in New Jersey, but she understands where I’m coming from. My mom has already started buying me little things here and there for an apartment I haven’t even rented out yet. We do have a real estate agent (a close friend of mine) who is helping us with the move, and it looks like I’ll be all by my lonesome starting May 15th. Not only will I be the first in my family to graduate from college, I’ve been on Dean’s List every semester, so you can see why my family is being so supportive. Part of my hard work in school is proof for my family that I am no longer a spoiled brat who takes advantage of her opportunities, but instead a woman who embraces and makes the best of the opportunities that come my way now.


Health update: A few months ago, I had an MRI that shown a lesion pressing against my spinal cord. The neurologist warned me that the lesion would eventually grow and start to show side effects. When I tilt my head down, my body feels like it’s stinging down to my fingertips and toes.

This time around, I’m more worried about my father. We went to the doctor on Thursday morning to review his blood results. Knowing I’m interested in medicine, the doctor spoke to me like a protege. I was the translator of doctor lingo between my father and Dr. Patel. His overdose from two years ago has given him liver damage. On top of that, his cholesterol is off the charts and is at high risk for a heart attack. I’m proud of my dad – he has thrown away all the junk food in the house, started replacing butter with substitutes, started eating healthy and gave up sugar. My father is a man whose ideal dinner is a big greasy piece of meat, with anything fried on the side. Now he’s shopping at Whole Foods.

We made a deal; he better live long enough to see me graduate Medical school.


I don’t think I would be where I am today without my diagnosis, as crazy as it sounds. I think sometimes it takes trauma for people to change; I’m definitely one of those people. When your life is undetermined, when your future is unclear, all because of one diagnosis of Multiple Sclerosis, you start to really push yourself to become a better person, and make a positive impact on those around you.

Happy Anniversary

Today is my 5-year anniversary of my diagnosis.

I was accepted to two Universities simultaneously over the weekend – without any interviews. A part of me likes to think that this may have been on purpose. In my entrance essays, I wrote about my journey with Multiple Sclerosis and how I was diagnosed on Valentine’s Day. Their timing couldn't have been any more perfect, or ironic. I have to admit, in both essays, I wrote something like, "while in a wheelchair, I dreamed of going to ___ University" (I changed the name in both essays, of course). Maybe this was their way of showing me some love.

Who knows?


I came home from work to find two huge packets from both colleges. Nervous as I could be, I tore open the first package and dug through until I found the letter from the Dean; a double “Congratulations!”

After crying for almost an hour, this overwhelming sense of purpose and relief came over me. It’s like working your hardest for a goal that almost seems impossible, to only have it come true. Five years ago, I thought life was over, I thought things were hopeless. Now, my future is infinite of opportunities. Here I am, exactly where I was dreaming to be 5-years ago. The next step: finding an apartment close to school. Hopefully somewhere that's not scary, an apartment where I don't have to sleep with an uzi under the bed. Are there ninja classes I can take?


So, I’m not sad about today. I’m not exactly celebrating it neither. To me, it is only a milestone in the future I have completely mapped out for myself while I sat for months in rehab. Hard work and patience do pay off.

P.S... Please donate to my Walk for MS team. And if you would like to join in, just click the join our team button! Donations will help find a cure. I'd like to live a long and very awesome life. Donate here!

Welcome To Your Life

“Something is different about you, Natalie,” my mother and father say almost on a daily basis.

I feel different, too. Almost like I woke up one morning and my view on everything had changed.
I’ve been planning my walk for the MS Society in May; handing out brochures, posters and awareness pins. So far, my walking group has reached over our goal of $300. Without my friends and family, I don’t think I would be where I am today, and I am honored to be walking with them.

Feeling the benefits of charity, I have also joined the Big Brothers and Sisters of America. Even though I haven’t been set up with my ‘little sister’ yet (I asked to be paired with a girl who is disabled), I’m excited to be making an impact on youth.

A huge check came in my name last month (I have a job on a hit television show), and I was able to pay off my debts. Instead of going out, buying a dozen pairs of high heels and having a shopping spree, I decided to pay off all my debts. I am happy to announce that I have absolutely no debt.

Watching my best friend Astrid falling for my very good friend Dave is having an affect on me. Why am I still single? I am patient. Not everyone out there is meant for you, but once in awhile, someone comes along and makes your day a little bit better. However, I need to work on myself. I have too much respect for myself to involve myself in any toxic relationships. My focus has been on nothing but school, charity, family and friends. For years, I’ve had problems with relationships. I felt as something was missing, but now I know what it was -- me. I needed to be happy with myself before I could become happy with anyone else.

I’m at the point right now where I am comfortable being with myself and I don’t need a relationship to validate that. After all of the bad dates, crazy boyfriends and not so wonderful friendships, I finally know what true love is -- and I have it within myself.

I feel content. I feel like I've found my purpose.


“There are great things in store for you in your future, Natalie. I feel like your life is just beginning,” my mother said with a smile.

So when I ask my parents, “what is so different about me”, their response is, “you’ve grown up.”


Please donate to our MSWalk group -- we need all of the support we can get.
Donate here!

The Darkest

Just when things were working out so well, I started to develop a pretty bad exacerbation.

It started with my foot. Sometimes when I’m having numbness in my foot, my foot starts leaning towards the side while I walk. I had a brace made for me a few years back in the hospital but it no longer fits me, so I have to be careful while I walk. No heels for a little while.

Then the sensation started to move upwards towards my lower torso. I joke that you could probably stick a fork in my side and I probably wouldn’t feel it. And my hands are very shaky -- not good for business. Someone at a dinner party the other night asked, “Are you okay? You’re shaking!” It’s embarrassing sometimes. What do you say to that? Not to mention that my balance is off, so I appear to look drunk or hopped up on something.

The normal thing would be to go to my Neurologist and set up an at-home IV treatment or spend a few days in the hospital, however I can’t afford to right now. My fall semester is ending very soon and I can’t miss any days. If I miss days, I lose the grant money I was awarded for having MS in the first place – irony, huh? So all I can do is hope that I don’t become worse between now and December 20th.

The worst thing I could possibly do is become negative about it. In the end, all of this makes me even stronger. Having MS puts your will, patience and mind to test. Someone recently told me that good things always come from something bad. That’s the way you have to look at life sometimes. No matter how dark you may think things are.. there will be a light somewhere.

My father once told me three things: don’t ever tell any guys you date that you are sick; they will never want you, to not be disappointed in life because I can’t be successful as other people because I have a disease, and try not to make friends; they will only hurt you in the end.
I can’t help to think sometimes that he may be right and I used to think that I would try my hardest to prove him wrong. That's not the case anymore; everything I try to do, I do for myself. How often can you say that you are truly proud of yourself?

When Is Enough, Enough?

"Too much of a good thing does not make it a good thing very long" -- my fortune cookie.

I wish I could stay this age forever.

Recently, I won award money for school by writing an essay on MS and what it was like being disabled. After the next semester, I'll start applying for the bigwig schools. I'm excited about my higher education and how far I've come.

Though, I'm still pushing myself. There's a marathon in the spring and I figured if I could ride a bike, I could definitely run on foot. I barely have any free time and I'm always on the go, something I like but I can feel my body telling me "enough already". On top of that, I barely eat. It's not something I choose to do purposely, I'm just so busy that I can never tell if I'm hungry or not. I can't use the same pair of pants after 3 weeks because they become too big; have no idea what size I am now. And I have two work projects coming up that guarantee even more of a time-suck.

The friendships I had in my youth are so much different than what they are today. Today, we talk about love, life and change. Then, we talked about bars, sex and drama. All the bridges are burned between any hostile friendships I have had. It warms my heart to hear about friends getting married, having children or are successful at work. The stability at this age can get shaky, but watching it bloom into something so fantastic is amazing.

I have a very close friend, MG, that I care about very deeply. She’s the reason I’ve been fortunate enough to experience life without my walls up. MG has brought happiness in my life and when I’m around her, I feel at home. Last night, me, MG and another close friend, A, were sitting on a roof deck in Northern Liberties, looking at the Philadelphia skyline. That moment was euphoria. I’m a sucker for the “little things”, and moments like that always stick in my mind the most. I was in the greatest city in the world, with some of the most extraordinary people I’ve been lucky to meet.

For four years, I avoided dating altogether. It came time this past year to decide whether or not I was ready for a relationship. Of course, there are always a few frogs or guys that aren’t mutually mentally and emotionally mature as I am at this point in life. It’s been so long since I have felt anything for anyone romantically. I would never have believed how difficult it is to find someone that can quit playing games and let things happen naturally. It’s also difficult for guys to get used to my schedule. I’m so curious to how something could develop considering my friendships have grown this beautifully. Won’t lie; I’m so very tired of the dating game. I hate that there are conceived rules, pressure on marriage and mind tricks. I’m tired of bullshit.
A partnership where just being around each other is enough, where sex becomes intense due to a special chemistry, and the ability to feel absolutely comfortable.

For so long, I was dependent on other people to help me; bathe, eat, walk. It's nice for a change, to depend on one person, like I have been for awhile. But the other people in my life make living so much sweeter.

Hurts Worst.

I’ve been hesitating writing about the subject of prescription medication. I don’t even feel comfortable talking about it to friends, let alone the blog-o-sphere.

In my late teens, early twenties, I drank a lot. I may have experimented with things, but I didn’t consider myself with any kind of drug habit; only a normal kid my age.

Not everyone with MS feels pain in the same way. Some have a burning sensation, some are sensitive to the touch, and others are often mistaken for arthritis pain.

I feel pain in my joints, at all times. If you remember growing pains as a kid – that’s exactly what I’m talking about. Sometimes a doctor will ask, “on a scale to 1-10, what is your pain rating. Ten being the worst.” The worst pain I have ever felt was when I was in the first stages of the diagnosis. My mother used to touch my feet, a gesture of comfort, and I would yell at her because the sensation was as if she were executing me. As time went on, because of being in a wheelchair, my joints started to ache. I now receive Cortisone shots in my kneecaps.

In the beginning, a doctor prescribed me Percocet. At that time, I had thought I found the cure. The pain went away, my mood changed, and I was able to do daily day-to-day things I hadn’t been able to do before. However, my body became used to Percocet and the doctors at UPENN thought I needed something that was long term, for chronic pain. I was prescribed Fentanyl patches. The patches eventually did work, but they couldn’t stay on properly to my extra sensitive skin; they were making me break out in rash, as well. The last resort was a prescription for Oxycontin, given to me two years ago.

Oxycontin is supposed to be taken every 12 hours. Two years ago, I started off at 20mg and now I’m up to 40mg, because just like the Percocet, my body was becoming used to it. I can completely understand why a heroin addict does what they do. Say I run out of meds, I’m late making an appointment to go get them; I never knew what a “10 on the pain scale” really was until I started experiencing withdrawls.

Around the time you are supposed to take your next dose, you start to get a runny nose, a headache, and like a friend described as “your skin feels like it’s crawling”. Last year at work, my medication was stolen and I was left with absolutely nothing. I actually had to go make a police report for proof to show my doctor (whom I’ve been going to since I was 13 years old). Within that week, I started sweating, vomiting, and I couldn’t keep still. I didn’t sleep, eat, and I couldn’t function like a normal person. My doctor did re-fill it, and she let me know that a sudden “cold turkey” going off synthetic heroin like Oxycontin can actually cause a heart attack. Now, pain or no pain, I feel forced to take the medication to function properly. Luckily, NJ legalized the use of marijuana for MS and cancer patients. Within the year, I will have a prescription for marijuana, and be able to grow 2 plants on my own. I won’t have to worry about the number 10 on the pain scale anymore, of overdosing, or of heart attacks. I rather worry about getting a serious case of the munchies.

Finally, I met a young woman the other day and she’s been on my mind for the last few days. The girl kept asking me, "what is going to happen to me?" She is only a year younger than I was when I was first diagnosed. She’s new to the diagnosis, new to the MS Society. Telling her it will be alright, I knew deep down that she will experience that 10 on a pain scale just like I had, emotionally and physically. I didn't have the heart to say it. It’s brought back a lot of bad memories of that first week in the hospital, and the consequences of my diagnosis. I know that girl will have a long, long, difficult road ahead of her. And I know she knows it too. I feel for her, I really do. In a matter of not only a year, I had lost my boyfriend, a lot of “friends”, my apartment, my car, and the sanity of not only myself, but my family. Now, close friends of mine always compliment the way I have handled my Multiple Sclerosis, even though I’ve hidden it very well. But have I really handled it well? I still feel lingering depression about it, not to mention anxiety and a serious lack of trust within my social group.

So, I think about her, and all of the other millions of other young kids diagnosed with MS. I’ve been attending college, my major being Psychology, for awhile now. My goal was to go into Research, but I know now I want to work with the physically disabled. I want to make sure no one ever has to 'hurt worst'.

Dean's List

Meanwhile, I'm going to two different schools... I've been taking some classes at a local community college. I'm trying to speed up my degree. I've signed up for some basic classes (Science, Anatomy, Spanish, etc) at the community college, while I focus all of the classes that revolve around my major at the University. I have a 4.0 at both schools.

Today, I received an award from BCC. I made Dean's List two semesters in a row.

Pretty good for a girl that has a lot on her plate.