While We're Young

I won't be live-blogging this one from the hospital, because every time I start to talk about it, I cry like a giant baby.  Plus, there is an insanely cute nurse on my rotation this morning... let's keep it cool, here, right?

As of right now, I'm waiting to go get a swallowing test.  I've done so many of these in my lifetime of MS.  Basically, they put you up against an x-ray machine and watch you eat radioactive food.  The doctors are able to see the way you swallow because everything in your mouth and throat looks likes Superman's gourds.   Doctors are believing the reason I get chronic pneumonia so much is the fact I'm not swallowing my foods right and the food is going down the wrong tube.  I could potentially die from this.

My MRI's came back, as well.  My brain is riddled with new lesions, as well as old lesions.  It's safe to say, my MS isn't getting any better.  My loving readers, my MS has been upgraded to Progressive.


For some reason, this hospitalization was different.  I've lost count over so many times, but I took a life at my, at my choices and I got this deep, dark sinking feeling that I've been wasting away the years of my health to... well, nothing.  As if I've been chasing my tail and getting absolutely nowhere.  I've had quite a few chances over the last few months to move, but I knew it would be a bad idea with maybe the worst roommates ever.  Now that I'm not on a lease living by myself and I'm taking a break from school, what a better time than now to make a run for it?

I'm happy, but I know I'm not giving it my all.  Whether it's plain laziness or fear of failure, goddammit, I will give this attempt 110% effort.

I was sinking right back into the place I tried to run from in my early 20's.  I didn't tell people I was sick.  I didn't tell friends I was in the hospital.  I didn't care -- this fight was my own to fight.  I have no right to be angry at others for it

After talks, and when I say "talks" - I mean crying blubs of mess - with my parents... they came to my help.  And after more talks with friends, I knew it would be a done deal by the 3rd night in the hospital at 2 a.m. looking at schools to transfer to, essays to write and check-lists to be done.

I never believed in running away from your problems.  I've always felt they'd come right back to haunt you if you conquer them in the first place.  However,  feel like me and Philly have ended our love affair a long time ago.  Like I've told the folks the other night; "I want to live somewhere no one knows I'm sick.  I want to be given a second chance in life like any normal girl should."



I think I at least deserve that.  I want the ability to live a life I haven't yet while I'm still young.

What It Feels Like To Be Diagnosed With MS

My dad brought me into the E.R. during the afternoon of February 14th, 2006.  The E.R. was packed.  I remember one man's skin was literally melting off after an explosion with his grill.  There was a teenager with his hand wrapped, bandages soaked in blood.  As soon as I walked up to go register myself, I fell right to the floor.  I could feel my legs, but the floor felt like sand and my legs weren't listening to the commands in my head.

"GET A WHEELCHAIR!  HURRY!  GET HER A ROOM!" the nurses said, yelling for help.

 ____________________________________________

 
I was resting in my hospital bed after a long day of being poked and prodded.  I remember the lights were off, but the glow of the television set lit the room.  I wasn't watching t.v., I was waiting for a doctor to come tell me why I couldn't move my legs.  I was wondering why my friends weren't calling.  I wondered what my boyfriend was going to do that night for Valentine's Day.

My neurologist came in and explained to me all of my test results.  Blood tests were negative, negative for STD's, negative for drugs, negative for Lyme Disease, negative for Transverse Myelitis.

"The only option left is Multiple Sclerosis.  You'll have MRI's tomorrow to see if there are any lesions," he explained, holding my hand as I cried in my hospital bed.  I knew what Multiple Sclerosis was, my cousin had it and his MS was so severe.  I had heard stories of how my aunt took him to Mexico for bee stings and snake venom.  Years ago, there barely were any options to help MS, but rumor had it that bee stings and venom could be a possible cure.  My aunt had tried her hardest.  My cousin's MS impacted the family so traumatically, I knew when I would tell my father that I'd have MS, he wouldn't take it so well.

I think I became more worried about telling people about MS than the actual diagnosis itself.

The hospital doctors talked about I-V steroids and rehab -- maybe I'll get better and walk again.  I was in high spirits, but not for long.  In rehab, everyone is on a set schedule.  There was a 7 a.m. wake-up call, 8 a.m. breakfast, 9 a.m. rehab, 11 a.m - 1 p.m. was lunch and resting, 2 p.m was rehab and you were done for the day at 4 p.m., followed by a 5 p.m. dinner.

I got into my wheelchair at 7:30 a.m. to get ready for breakfast.  At that time, I barely knew how to use a wheelchair.  I couldn't push with my legs, so I relied heavily on others to push me around.  And there I was -- in the middle of the rehab hallway by myself, unable to push my wheelchair and no one around to help me.  It was then when I realized how alone I felt, how my diagnosis alienated me from the world I knew.  It was then I realized my diagnosis would change my life forever and the life as I knew it would never be the same.

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My friend doing the WalkMS with me last year

When someone is diagnosed with MS, their world is turned upside-down.  First, you have to learn to accept it.  It might take years to accept a diagnosis, but initially, you hear it happening but you never believe it will ever happen to you.  Second, you worry about what your friends and family will think.  You will start to feel like a burden to other people.  You feel like you'll become the "downer" to your friends.  Then when friends call less and less, your fears become realized.  I had spent hours on a computer researching what MS really was and I sunk myself into a world of "what if's".  Will I ever have children?  Will I become a vegetable one day?  Am I going to work again?  Who will want to love someone like me?  Will I ever be happy again like I was?  A diagnosis sounded like the end of the world.  

But a diagnosis doesn't have to be that way.  I tell everyone I talk to from this website the same thing -- I wish I could tell you everything will be coming up daisies, but it won't.  However, MS will change your life in ways you have never imagined.  Even though friends came and go, a new crop of friends will show... friends who will support you no matter what; true friends.  Family bonds will be tightened.  And here's the best part -- your confidence will be stellar.  You are fighting MS -- you can fight anything.  You are the ultimate fighting ninja warrior and you can do it all.  Positivity and determination will take you every where in the world, always remember that.

Update

I have the best news.

I am going home from rehab... using a cane!

I will post a giant entry Wednesday.  Lots of trouble, happiness, strife, heart ache and a different physical appearance.

Love.

Steroids vs. Weight Loss

February 17, 2011





When I was weighed the first day at the hospital, I was only 109lbs. I was severely underweight. It’s not like I starved myself, I wasn’t even on a diet. I worked a job that required walking for 12 hours a day, where we could not sit, eat, or have a lunch break. My food intake was scraps from the restaurant I was working at and alcohol after my shift. At the restaurant, when food became “bad” (food taken back to the kitchen and sat unwanted), we waitresses would pick at the dish like scavengers. I ate, but I would burn all of the calories waitressing. On top of that, I lived in the city where I would walk or use a bicycle.



When the nurses would come into my room to administer a Heparin shot (blood thinners for those who are bed-ridden), they would always joke that I had no fat on my stomach to poke the needle in. Then the steroids started.



Steroids will make you gain weight quicker than you can say, “how the hell did I gain all of this weight?!” Never mind the chalky aftertaste of an IV-steroid drip, that stuff made you super duper hungry. I did nothing but sit in bed, watch television and eat. I thought, “I need to gain weight anyway, so who cares?”… but like I said, the weight packed on… and on… and on.



Our Lady Of Lourdes (the rehab I spent a total of 6 months recovering) had an awesome cafeteria; especially considering hospital food is probably worse than eating dog food. I gained more weight than I’d like to admit on my blog, and by the time I was released, my size 0-2 clothing had to go. After 3 years, I was a size 14. I had never been that big in my life, all because of steroids and the side effects. The weight gain made me so embarrassed to leave the house and see old friends because I didn’t want them to see a fat Natalie. I had to do something about it, especially when my blood work came back and I was diagnosed with high cholesterol. Worse, the rapid weight gain (not to mention being in a wheelchair) was torture on my knees, and I still have problems with them – I get cortisone shots in both knees every few months to this day.



So I started to exercise and diet. I stopped smoking. I even stopped drinking alcohol. Weight was coming off, but slowly. The past year, I started to really push myself – running a marathon, doing MS Walks, using the stairs instead of elevators, biking, and taking exercise classes. I also held a strict diet, and still do. I make smoothies: bananas, strawberries and some low fat frozen yogurt. I eat fruit and granola for breakfast with Slimfast, another Slimfast for lunch, almonds whenever I have the munchies, but I ate dinner. Dinner, however, I cut in half. I bought smaller plates. Biggest weight loss plan: STOP EATING SALT! I do, occasionally on the weekends, cheat and eat crap food, and drink alcohol on occasion (usually vodka). Eventually, my stomach shrank and food was no longer the enemy.



Every month, I lose more and more weight. Since the fall, I started jogging in the morning, I’ve lost so much weight, and I feel extremely healthy. I’m 5’ 8” and I’m definitely not aiming to go back to the body I had before MS. I looked pretty sickly. I’m now a size 6, my legs are toned and my belly is thinner.



Steroid weight is a total bitch to get rid of, but it is possible and totally hard work. It takes dedication. The downside? Buying new clothes every few weeks. But the feeling of squeezing into a size small/medium is totally worth it.

Happy Kinda Awesome

Holidays have come and passed. Happy belated Holidays!

I was experiencing a flare-up before the holidays, but wanted to wait it out till they had ended. However, my symptoms were getting worse every week. Good news is, no new symptoms and the ones I was experiencing first are dissipating.

Though, the past week I’ve had Dysphagia. My primary doctor, Dr. P, made an emergency appointment with my neurologist for this morning. My neurologist seemed off, impatient and took my case like I got a scratch on my knee. He didn’t even perform any examination of my mouth/swallowing! Only hearing the usual “well, your right side is weaker than your left” and other bullshit, he wrote me out a prescription for steroids. Now, last time I had a flare-up, I was losing my vision and he wanted me to immediately check into a hospital, until I talked him into home care. Here I am, a shipwreck of health problems, and I’m dismissed quicker than a toilet flush.

Anyway, to make a long story short, I called Dr. P for some advice. Dr. P made some phone calls for me to get treatment at UPENN and basically told me to not go back to my original neurologist. I like Dr. P; he’s a Harvard grad, a heart surgeon and actually speaks to me like a human being, not a Petri dish.

A Doctor problem aside, the most difficult thing today was my father’s ignorance. My parents are strong believers in the “if we pretend it is not happening, it isn’t there” mantra. I turned to my father in the doctor’s office and asked, “Do you know why we’re here?”

“Yeah, you have a problem eating or something.”
“Dad… I have Dysphagia. I could get fluid in my lungs and develop an infection,” I explained, concerned.
“Don’t be all doom and gloom,” he replies, going back to reading a month old tabloid magazine.

I am not even sure if my father knows what Multiple Sclerosis is.


On a brighter side, my holidays were the best I’ve had in awhile. My parents were in a great mood, I spent a lot of time with friends and had a lot of fun, too. I celebrated my birthday three times! I got super drunk last week, something that doesn’t happen very often in my life, but I did learn what it felt like to be Lindsay Lohan the morning after. And on New Years, I couldn’t have spent it with better people. I also received a pretty sweet kissing session, too.

You could say that I concluded my year with a happy ending. And I couldn’t be more excited for 2011.

In The End, Life Is Stronger Than Death

Went to the doctor today. The reason being was I am having a hard time ingesting food, and I constantly feel as if my gag reflux was checking in some over-time. It was not a neurologist, just my internal medicine doctor. For weeks, I had a horrible case of the hiccups, always choking on food, the thought of eating made me gag even though it smelled delicious and eating has become a chore.

For example, eating hard food felt like it was going down the wrong tube. That is the closest I can compare it to.

It was discomforting (to say the least) to find that my symptoms came back to my MS. I was diagnosed with Dysphagia.

Definition: It seems like swallowing would just be second nature, not something we have to think about in order to do safely. However, swallowing is a complicated process that involves all sorts of muscle coordination and feedback to and from the brain through certain nerves and neural pathways. Multiple sclerosis (MS) can damage any of these nerves as well as the area of the brain responsible for coordinating swallowing, the brain-stem. This can lead to swallowing difficulties, called Dysphagia.

And what does Dyspagia feel like?

- Difficulty chewing

- Coughing while eating or immediately afterwards.

- The need to swallow more than twice.

- Choking sensations.

- Food sticking in the throat.

- Weak, soft voice.

- Feeling that it is hard to swallow food or move it to the back of the mouth.

- Aspiration, meaning food or drink is going down the windpipe into the lungs.

And why I'm in panic mode:

Dysphagia can become so severe that people become dehydrated or malnourished. If the tips for managing swallowing difficulties (such as chewing your food thoroughly and adding thickener to your drinks) don’t work, it may be necessary to use a feeding tube. Aspirated food or liquids can also cause aspiration pneumonia. This is a particularly dangerous lung infection, and it is the number one cause of death in people with MS.

This is what my cousin Johnny passed away from.

My doctor called my neurologist immediately and informed him of my situation. It usually takes a pretty damn long time to get an appointment with a specialist, but in this case, my neurologist made me his first priority on Monday morning.

This could go two ways:

1. I could be admitted into yet another rehab for speech and swallowing therapy. They would want to watch me for the next few days because at the rate I'm losing weight and not eating (or picking at food), the idea of malnutrition was brought up. I would also need a scan and ultrasound of my throat.

2. I could possibly have a nurse come to my home and hook up the IV's again. Also, I would have a therapist come to the home to monitor me.

The thought of going into the hospital does not deter my worry -- the thought of death does.

The Ram

Earlier, I was writing essays for my grad school applications. They were all about my diagnosis with Multiple Sclerosis, but I never gave a proper ending to the story on my blog.

I spent 4 more times in the hospital. This is only counting MS related visits; MS lowers your immune system and creates a whole lot of other hospital visits. With every visit, my faith in the universe dwindled down to the size of a pencil tip. But my last hospital visit was different. A very good friend, Astrid, sat down and said, "you need to fight."

"What the hell do you mean 'you need to fight'?"

"Remember when we were watching Animal Planet and the leopard was attacking the ram and the ram was just giving up? Then at the last minute, the ram just runs the damn thing into the wall and sticks it's horns in it?!", she asks. "You need to be the ram."

I had absolutely no idea what episode she was talking about. Although, I did get what she was trying to say and it made me realize that I was walking in pity of myself. This "woe is me" shit had to go. So I worked my ass off. I felt as if I couldn't live with myself unless I tried enough to accomplish something.

I receive a lot of e-mails asking me how I went from a wheelchair to walking again. There is no special diet. There are no cures with bee stings and snake venom (I'm not kidding, Google it). However, I did push myself every single day to walk, talk and function again. And don't just think your actions will take you far; you have to believe it. You have to believe that your hard work will pay off, that you could make your own happy ending.

Be the ram.

The Size Of The Fight In The Dog

A friend recently told me that is it’s not the size of the dog in the fight; it’s the fight inside the dog. It has been keeping me grounded. (Thank you)

Tonight, I had an invitation to a party where the theme was ‘G’ and I was excited about going. I have a beautiful Geisha costume, some parts original and authentic.
This past week, I’ve been driving to and from class but I’ve noticed that I can feel the pedal, I just don’t know where the pedal begins or ends, so my foots slips off. Or my foot feels so heavy, that I speed up quickly or make short stops. To help myself, I’ve been using a cane while at school; carrying a 20lb book-bag can tire a girl with MS out, but my friends haven’t seen me with a walking device for almost 5 years.

The girls I had plans with have seen me at my worst… at the hospital, during therapy and in a wheelchair. What made me so afraid? When one of my best friends asked when I would be arriving, I spent close to 15 minutes trying to respond whether or not, “should I lie and say I’m sick? Or should I tell the truth and risk friendship?”

My flare up is about a 6 ½ on a scale through 1-10 (10 being back in the chair). It starts off as a pins and needles sensation, like that feeling you get when your foot is just starting to fall asleep. Gradually, the sensation increases as if your leg was full-on asleep, like that moment when you try to gain balance from rising up from your seat and you are having a hard time feeling where your foot lands on the floor. This sensation reaches all the way to my lower breast and it’s all on my right side (which means I must have a lesion on the left side of my brain).

I can easily get treatment. Treatment should take 3-4 days depending on the severity. My flare up started a few weeks ago but I’ve been hesitating calling my neurologist. You see, school is ending and it has been the most difficult semester thus far. I had only 2 weeks left; why stop now? I promised that I would get treatment immediately but there is one thing that bothers me.
The last time I came to my doctor about a flare up, the only symptom was loss of vision. He instantly jumped to the conclusion that I should be admitted into the hospital. After some bargaining, I convinced him to do an at-home treatment where I would be set up with an IV. The steroid IV lasts for 3 days, 3 hours a day and you cannot leave the house because there is a temporary IV in your hand that can’t be exposed. If I came to my doctor now and explained that I’m pretty concerned about my health, I know an at-home treatment would probably be out of the question – I would be hospitalized again.

What gives me hope is that some days are better than others. When I used to have flare ups, they would increasingly become worse by the hour, but this time its been prolonged. What bothers me is that my social life is back to normal, I feel comfortable with my friends, I’m happy – hospitalization would destroy my spirit.

I can never explain how lonely it feels when you are experiencing an exacerbation. You’re basically on your own.
So tonight, instead of the party, I spent hours reading and cutting pictures out of National Geographic magazines from the 1970’s, knitting and painting presents for friends.

What’s different now is that I know I have it in me to fight, like my friend said. Years ago, I had nothing to fight for… my life was transient, unstable and had no direction. Now, I want my Doctorate more than anything, I love my friends, and emotionally I feel calm and stability I’ve never felt before.

Tonight, it made me happy to think that the only problems I have in my life are schoolwork and who to kiss at midnight on New Years Eve. I will never let my MS trump me, I hold the cards and it is my decision how to play them.

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?

Visual Reference: Therapy In Bed

[permission]

Walls Come Down

It’s been almost 24 hours since I started my IV-meds. I can happily say that my hands are not as numb as they have been for the last month, though my fingertips are still missing the proper sensation. My eyesight has also improved immensely.

I’ve also been contemplating the subject of karma. For years, especially when the MS began, I always cried, “Why me!” Wondering what I did in the first place to deserve all of the tragedy that has come with the illness.

I’ve said before, that prior to my diagnosis, I wasn’t the most perfect person. I mean, who is, anyway? Though, I’m not proud of things I’ve done. I behaved very childishly immature, in my early 20’s, only caring about myself.

The other night, an ex-boyfriend told me that I contributed to his trust issues in people. The words are burned into my brain because I’m sure I’ve led to the same problem with many other people I’ve known when I was younger.

I’m also sure there are quite a few people that are happy to see me with a diagnosis.

However, I couldn’t be happier about all of the hospital visits, the diagnosis, and the pain. I’ve had to learn about patience, love, unselfishness and trust.

Do I believe in karma? I don’t know. But what I do know is that I’ve learned very important lessons over the past few years. I wouldn’t trade anything I’ve been through for the world. Fortunately, the worst of times has brought out the best in me.

Quick Update.

I went to see my Neurologist yesterday (Dr. Bruce Lipsius of Cherry Hill, NJ).

It was a check up, and to also get the results of my nerve test I had done a month prior. However, I told him about my eye, and how I have been having vision problems. My right eye... it seems like I've been starring into the sun, and the white light won't go away. It also hurts, as if it were strained.

He let me know he was worried about losing vision, and said I was coming down with a case of "optic neuritis".

I asked if there was any possible way that it could go away on its own.

Instead, he tells me he wants me to get an IV steroid as soon as possible. Having a nurse come to my home for the next three days, I will be lugging around an IV-stand like a sick inpatient. After the three days, I will have to take oral steroids for five more.

Good news!?!? I'm in remission!!!!!!

UPDATE: I could have gone to the hospital because I'm alone with the IV... but I'm safe enough to stay home. Medicine is now dripping, two more days to go...

Visual Reference: Steroid Side Effects.

2005: size 2
late 2006: size 2
late 2007: size 12
now (2010): size 8

Beginning of 2007 was spent in a wheelchair, and 2008, along with daily doses of Prednisone, contributed to dramatic weight gain. As of now, I'm still losing weight, with the help of daily exercise, and a healthy diet.

Back To Shape

The combination of the steroids and living in a wheelchair had made me gain a lot of weight. Since December, I've lost 35lbs and I'm very close to being my goal weight again. It didn't come easy.

First, I stopped taking steroids. This is a super controversy, much to my family's chagrin, but the steroids were making me gain a ton of weight. No matter what the symptom was, I would work through it on my own with therapy.

Second, I got off my ass. Being determined enough to get back to my old self, I found things to do: painted the house, cleaned, walked to the store instead of driving, and using the stairs instead of an elevator.

I also stopped eating unhealthy. Not only did I notice a difference in weight, I noticed that my symptoms were far and few in-between. I'd have a Slim-Fast and a fruit cup for breakfast. For lunch, I'd make a smoothie. Six to seven strawberries, a tiny bit of cream, 2 cups of 2% milk, 2 tablespoons both frozen strawberry and vanilla yogurt.
If I was craving stacks, I would eat almonds, grapes or berries.
Dinner time is most difficult. I avoided as much carbohydrates as possible. Only turkey, skinniness chicken, or fish and a side of vegetables. I cheat on my diet, maybe, twice a week. Whatever food is on my plate, I only eat half of it. I also made use of smaller plates to force myself to have smaller portions.

There is a Multiple Sclerosis Bike-A-Thon later in the year that I had signed up to. It's a 25m bike ride that needs intense training. At first, it was little a time. A half a mile here, a mile there, and then riding 5 miles a day. Since it has been pretty hot out, I wait to ride my back till the sun starts to set and it gets cooler outside (usually around 7 or 8 o'clock).

For my last advice, be careful. You will know when your body wants to stop, so don't push it. Even on the days you feel extra tired, take a little nap, and get that little needed energy to exercise.