Atmosphere

Back to yoga

It's been a few years, but hi readers!

If your new to this blog, let me give a quick run down:

Years ago during a MS support group, the idea of starting a blog/vlogs and documenting your journey was encouraged.  Soon enough, I'd gain a decent following, met extraordinary people and great friends (a few I still keep in touch with).  It was therapeutic.  I'm not very open with discussing all the feels, but having this blog really helped with that.  I'm opening it will help again, and perhaps help other people new to this disease reading this.  I've unlocked all of my previous entries and will be unlocking my YouTube videos.

Since I last posted, I moved away from Philadelphia and made roots in Buffalo.  Strangely enough, MS is super prevalent around these parts.  I don't have to explain to a single person what Multiple Sclerosis actually is.  However, over the years I became withdrawn.  No longer being active in the MS community, I wasn't even telling people I had MS.  I thought moving to Buffalo would give me a new identity.

Living with this disease has absolutely been no picnic.  I stopped spending time with friends.  I stopped dating.  I stopped taking overall care of myself.  I became angry at the world, kept people at a distance and avoided my diagnosis at all costs.

Life was going well, blissfully ignorant, with my head in the sand.  Until I met someone new.  Let's call him R.  Now R is much younger -- I am talking real cougar, 9 year age difference.  What started off as what I wanted to be short-lived and inconspicuous, I would quickly become aware that this was the real deal.  Even though I've known him for 2 years, I've know him for much longer -- he was the image in my head of the ideal partner in crime for myself.  Plane going down levels of anxiety would set in.  After constantly being told you are perfect by someone you care about, it puts a lot of pressure on a person.  Telling someone you are romantically interested in that you are disabled with a disease that has no cure, panic and depression sets in.

Then my vision started to become blurry, the next month I had pins and needles in my hands, and then the following month I started to have difficulty walking.  I had to wake up to reality that this person who has put me on a perfect pedestal would see me at my worst.  Then my mother would validate my worst fear out loud -- he is 25, you are 34 with a progressive disease, so why on Earth would he stick around?  Like that, I would be at war with myself.  One side started to purposely try and sink the ship.  The other would put him to the test to see how he would be in crisis.  Lies, deception, and an overall shit-show would soon happen once my health became worse.   We had an expiration date and my mother could be right.  But with talent, I pushed away.  Ask anyone with MS and they will tell you that feeling like a burden is our worst fear realized.  I wanted R to not see me as perfect, as it was too much pressure on this sick girl's shoulders.  I cannot be perfect if there may come a day where he would have to help me take a shower, help me dress myself, or hold my hand when I'm unsteady.  And let me say that he is possibly one of the most unreliable people I have ever known.

He told me the other day that I ruined us.  And I did not because I purposely wanted to, but because of my own insecurities with being disabled.  It took burning what I had with R down to ash to realize that.

So here we are.  Losing someone I truly love very deeply was a wake-up call to get shit together, to take care of myself better, and to stop sabotaging life because I am scared shitless.  I need to work on myself.  In my 34 years of being on this Earth, I had never felt that way for another person.  In the process, I ruined myself as well.  And if I am going to welcome any relationships or friendships in the future, I am going to have to stop being a scared, self-sabotaging shithead.

I don‘t have many good years left, I need to start living.  I need to get out of my head and enjoy life for what it is.

I hope to reconnect with a lot of you soon.  This blog needs an extreme overhaul.

Smoking Pot Benefits MS Patients

Researchers from the University of California, San Diego School of Medicine have found that smoking marijuana can help relieve pain, and muscle tightness "spasticity" in individuals with multiple sclerosis (MS). The study is published in the Canadian Medical Association Journal (CMAJ).

Even though there are drugs available to relieve spasticity, a disabling condition in which the muscles become tight and hard to control, they do not always improve the condition in patients and can have also have side effects. 

This Is A High Speed Roller Coaster, With Sharp Turns And Sudden Stops

This might be my last blog post for a little while (I am writing this one from class). My schedule is going to be very hectic and I won’t have much time to sleep, let alone write on Blogger.

I’ve been happy. Honestly cannot remember the last time I have been this relaxed and cool as a cucumber.

Before I begin, I want to clarify that I am a very loving and forgiving person. I don’t like conflict and I definitely don’t like drama. However, when people come into my life and offer nothing but trouble, there is nothing else I can do other than say goodbye – especially now. It is time to be selfish. If there is a situation or a person in my life that offers me nothing but pain and grief, I have no other option than to leave it behind. It is what it is. I’m a sensitive person, and outside forces effect me quite deeply. If you stick around positive, you feel positive.

Been thinking a lot this week about where I am now. If you told me in the beginning of this year I would be living where I am, doing what I’m doing and spending time with the people I’m spending time with; I’d think you are crazy. When I first decided to move to my apartment now, I made it a plan to work, go to school and carry on. I didn’t move here to make friends, have a ton of fun on the side or meet someone I have an awesome connection with. My priority was all work and no play.

But if I have learned anything important this year, it is that timing is everything. Friendships that have formed and bonded over 10+ years can fizz out. New acquaintances become closer and on their way to a better friendship. Sometimes feelings that were lost can be found again. Everything eventually has their way of working things out, and even if you don’t like the result, it may just be for the better.

More importantly, give into what is instead of what could or should be. Sometimes doing nothing is better than doing too much, or too little. Just enjoy the ride and stop thinking too much -- you'll miss the best parts.

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.

My Top 5 Pet Peeves About Having MS

5.  Jumping To Conclusions

     There have been many, many times men have jumped to the conclusion that I cannot bear children.  Even though I'm pretty sure I don't want children in the future (and if I do, I'd probably want to adopt), men think because of my diagnosis, I'm barren.  Fact is, pregnant women with MS are 5 times more likely to be even healthier during their pregnancy.  Not to mention, many jump to the conclusion that MS will render me useless in my old age.  Maybe it will, but the only one who knows for sure is my body.  The most unfortunate case has been being turned down from jobs because of my health (not just MS). 

Although that shit is illegal, it's not exactly something you can prove.

4.  Insults

              I have pretty thick skin.  The only people I honestly care about how and what they feel
          about me is my family.  I've always believed when someone has something pretty bad to say
          about you, it's usually because they see something in you they feel they lack themselves.  Or
          the actual insults and the act of putting you down, lifts them 'up' in some way.

    However, it pisses me off (not really 'hurts') when my disability is used against me in some way.  For example, a few months ago I was called a "gimp".   Or the worst, "you deserve cancer!"  Man, it's just plain evil. 

3.   "But You Don't Look Disabled"

     Even though I have handicapped parking plates on my car, I usually don't park in a handicapped space unless I feel it's necessary.  I know first hand how it is being in a wheelchair (or using a cane/walker) and being unable to park in a handicapped spot when I really needed it.  But when I did park in those spots, there have been times I've been approached with the angry statement, "but you don't look disabled!" 

2.   No Invite

    Sometimes friends won't invite me to certain places because they're afraid it would be too much for me, and my MS, to handle.  Like if a camping trip was being planned, or down to small tasks such as going into a jacuzzi.  

    I'm not a person totally incapable of having fun because I have Multiple Sclerosis.  I can do the same shit you do -- and sometimes -- even better.  So what?  I have MS.  It doesn't mean I sit at home with my thumb up my ass.

1.  Damaged Goods

     My number one pet peeve is being treated as damaged goods. 

I will never forget how one day in rehab, my speech therapist came in for our session while my father was in the room visiting.  My speech therapist, who is paralyzed from a neck injury from the waist down, is permanently in a wheelchair.  My dad was asking her about her disability and her personal life... then seemed shocked to find out she was married.  As soon as my therapist left our session, my dad turns and says, "see!  She can find a man and a good job!  I'm sure you can too!" 

I know he meant well, but it hurt like hell.

The fact is -- I'm proud of myself.  I know it sounds morbid, but I'm kind of thankful I've been through what I've been through.  I wasn't the greatest person in my early 20's (already with health problems, anyway).  Being disabled has jump-started something inside me that I could never fully comprehend or even begin to explain.

I love life.  I have such an appreciation for life and waking up every single day.  And even though things can be shaky (like trying to date or find work suitable for my disability), I still make what's best of it.  What kind of life is it if you're miserable all of the damn time?  I don't want to be that person who hates waking up in the morning.  I don't want to be that person who takes things for granted.  And especially don't want to be that person who doesn't appreciate all the awesome small things life has to offer me.

Reader's Submission: Brie's Diagnosis

My boyfriend came around the bed, pulled me up and supported my steps all the way to the bathroom. I sternly made him leave me alone as I tried to stand on my own. I was holding on to the sink , staring at my reflection in the mirror and saying to myself "come on! Standing up is not that tough!" then, as I let go I fell to the floor, wallowing in a pool of my own urine and was unable to stand back up.

Just the day before, I was enjoying my life and job as a busy, successful bar  manager. I was walking aimlessly through life, excited about what the future may bring my way. The day after, I realized how cruel the future could be. I was lying in a hospital bed, unable to walk, barely able to talk and fearing my diagnosis. I was terrified of what was coming when a doctor, with a less than desirable bed-side manner, simply looked at me and said "Oh yeah, you have MS" and walked out of the icy cold hospital room. I was left all alone to come to terms with the news. For the first time in my life I was faced with my own mortality, unsure of what a life with Multiple Sclerosis would mean.

My busy fun-filled life had now turned to punishing days filled with depression, dependence and exhausting physical therapy. I remember hours and hours of frustration over not being able to stick a peg in a hole. Some challenges were just too much. I became isolated and withdrawn, pushing away everyone I loved. It was in that isolation that I realized that the disease may have my body, but my mind was vibrant and well.

As time went on, I was able to regain my ability to walk and talk, but the fear of relapse is always lurking around the proverbial corner. I was, and still am very well aware that MS is not curable and I will most likely end up in a wheelchair. More importantly, I came to realize the one thing that I can still depend on is my brain and my spirit. During my isolation and seclusion I had an epiphany. I could exercise the assets I had and either use my brain to learn or to teach. I decided to do both.

Changing my perspective changed my life. I know it sounds ridiculous, but I have often been thankful for my diagnosis. I went back to school, I am working on my Masters Degree, and I am also teaching. I have found wonderful treasures in the little moments in life.

Alcohol, Smoking & Diet May Affect MS

Booze = good, smoking = bad

 __________________________________________

Dietary factors and cigarette smoking may alter the course of disease in patients with a milder form of multiple sclerosis, a new study finds.

Out of nearly 900 patients with what is called "relapsing onset" multiple sclerosis (MS), those who regularly consumed alcohol, caffeine and fish were less likely to progress to the point that they needed help walking, which is considered a milestone in the course of the disease. In contrast, cigarette smoking was associated with an increased risk of becoming disabled.

One explanation is that dietary factors might have a direct protective effect on MS patients, said Dr. Marie D'hooghe, a clinical neurologist in Belgium and lead author of the study. Caffeine, fish and alcohol at low to moderate levels are all known to have anti-inflammatory properties, and focal, or localized, inflammation in the brain and spinal cord is an important aspect of relapsing MS.

However, the study did not prove that caffeine and alcohol will slow MS, an incurable disease of the nervous system, and patients should not use these findings as a reason to suddenly start brewing coffee and sipping cocktails.

Also, the study only saw the associations between diet and smoking and disease progression among patients with relapsing-remitting MS, and not among those with what is known as primary progressive MS.

This suggests that progressive MS is a distinct phase of the disease with different mechanisms, D'hooghe said. "Degeneration [of nerve cells] is probably more relevant in progressive onset and inflammation is not as important," she said.

MS affects more than 350,000 people in the United States and about 2.5 million worldwide. Most patients experience relapsing-remitting MS, which has a variable disease course involving alternating attacks and recovery periods, while about 15 percent of patients have primary progressive MS, marked by a steady worsening of the disease.

The new study is published in the April issue of the European Journal of Neurology.

For the study, researchers mailed questionnaires to patients registered with the Flemish MS Society, asking about their consumption of alcohol, wine, coffee, tea and fish, as well as about cigarette smoking.

The questionnaires also asked patients about their disease (relapsing or progressive), and whether they had reached the stage that they needed a cane or other support to walk about 330 feet, and if so, how long after disease diagnosis they reached that point.

The study included almost 1,400 participants, about 900 with relapsing-remitting MS and almost 500 with primary progressive MS. They were between 17 and 89 years of age.

Researchers found that the association between delayed disease progression and consumption of alcohol, caffeine and fish among relapsing MS patients was stronger for patients with greater consumption.

For example, patients who did not consume any alcohol took about 25 years to progress to the stage of disease where they needed support to walk. However, those who had either less than one drink or at least one alcoholic drink per week reached this stage at around 28 and 32 years, respectively.
In contrast, smoking appeared to accelerate disease progression. Smoking is known to be a risk factor for developing MS, and could also play a role in disease progression, D'hooghe said.

Still, it remains possible that diet and smoking do not affect the disease's course, D'hooghe noted. Instead, people who drink alcohol and caffeine and eat fish might be more likely to make other lifestyle or diet choices that affect the disease.

Another possibility, D'hooghe added, is that the MS patients who are able to enjoy a glass of wine or go out to buy fish are also the ones who have less advanced disease.
But even if dietary factors are not helpful against disease, this study suggests that low to moderate consumption might also not be harmful. "At least we have no argument for an adverse effect," D'hooghe said.

Another expert said it is tricky to know what the findings mean for patients.

Dr. Bianca Weinstock-Guttman, a neurologist at State University of New York at Buffalo, suggested that patients talk with their doctors about whether drinking alcohol might interfere with their medications and about the possibility that drinking caffeine could aggravate bladder problems that are common in MS.

While these dietary components could help early in the course of relapsing MS, it is very difficult to have a clear-cut benefit in the later stages of the disease or in the case of primary progressive MS, said Weinstock-Guttman

Source  http://news.yahoo.com/diet-smoking-may-affect-ms-progression-200408416.html

A New Beginning

I received quite a few messages from my past post about the 7 Stages.  I wish there was something more I could do, I really do.

Some people could very well move past though stages with grace, and some might become stuck.  I know it took me a very, very long time to get through those stages and I'm still very much in the process of acceptance.  So yes, I get a lot of you... I try to.
 

The old me after a night of boozin' @ 24 yrs old

Once upon a time, there was a girl who had many many friends (but not really the friends you wanted to have), she lived life in the fast lane and never looked back.  The only thing I cared about what was happening in the present, which wasn't much at all, but at the time I thought life was pretty damn rad.  But it took me a long time to figure out that I'm not that person anymore (probably up until very recently too).

There came a point where I realized I had to start all over again -- new job, new school, new friends, new boyfriend, new everything.  I also realized that dealing with situations, loving someone, friendships, all of that I once thought I had a handle on would never be the same.  After my diagnosis, I had to re-learn everything all over again, like a newborn.  Old me would have dealt with situations by pretending they weren't there, drinking the problem away or doing stupid any immature kid at that age would.  So not only was I now older, I had extreme health issues.

Being in school again at my age is no picnic.  It's hard to make friends... am I expected to do keg stands with 22 year old kids?   And doing makeup, something I loved to do, was more difficult with symptoms of Multiple Sclerosis.  I had to learn new techniques, I had to go to classes again and re-build my reputation because who wants an artist with an uneasy hand?

Most recent picture of me and my BFF Fio

And friends... well, true ones, of course.  I still know the people from the past, actually tried to resurrect them again somehow trying to build a mirage of my old former self.  In all honesty, I hang out with the same few people, people I truly love and consider real friends.  Sometimes I'll spend time with friends I haven't been so close with; a drinking buddy is more of a proper term I guess. Trying to make new friends in your mid-20's with a disease isn't so easy.  All the people I've known for most of my life had moved, "grown up" or couldn't handle me being in a wheelchair.  Like I was saying to someone earlier tonight... tons of people I know will write on my Facebook wall about how much they miss me.  It kind of irritates me, you know?  I'm not dead.  I didn't move 1,000 miles away.  Call a bitch up, yo.  Seriously.  You can't miss me that much if you can't use a phone.

And dating is just a disaster.  The first time I had my chance at it, my first gut-reaction was to pretend I was the girl I used to be in order to.... I don't know.... impress.  To make it look like I was like any other normal girl.  I said dumb shit.  I did crazy things.  Think of it this way -- you begin dating as a whole new you: new set of emotions, new set of goals, with a new personality.  I had a handle on my past relationships because I was comfortable with myself, I've had serious boyfriends before and at the time, they were successful... but now I'm different.  And even if the person you are with considers it 'games' (I hate that word), I understand you ladies.  To the way you handle a fight, to the way you show feelings, to the way you open yourself up to someone is all brand new territory.  We are all capable of crazy shit.  It's almost like you are entering in your very first relationship.

On the other hand, I'd still try to use those immature techniques I did when I thought I knew-it-all.  I remember once, I purposely started a fight just to see a reaction.  That's kiddie shit, that's shit I did when I was 23 years old.  Now, I knew very well I was doing it, although I didn't like doing it, I didn't want to do it, but up until that point... I had absolutely no lessons on healthy communication.  I'll always feel bad for Chunks in a way, because he met me at a time when I was re-building myself and I had absolutely no idea what I was doing, behaving in a way I would never behave, a way even my own friends found foreign to see.  I put that guy through hell at times, and for what?  To try high and hell water to have him not see me as a 'sick girl'?  Luckily, I can learn and take away from that.

On the upside, I feel more confidant than ever.  I can honestly say I know what I want.  If in my heart I feel like what I'm doing is the wrong way to handle something, then now I know which way is right.  Do you understand?  I once had a fear the people I've grown close with wouldn't like the 'new' me.  They met the old one, ya know?  But these past few weeks have been incredibly amazing because it's the first time in years I have been able to be myself -- whether someone likes that or not.

I wish you guys the best of luck.

The 7 Stages Of Grief

Any Psych 101 student can explain to you the Kübler-Ross model, commonly known as The Five Stages of Grief.  Kübler-Ross added that these stages are not meant to be complete or chronological. Her theory also holds that not everyone who experiences a life-threatening or life-altering event feels all five of the responses nor will everyone who does experience them do so in any particular order. The theory is that the reactions to illness, death, and loss are as unique as the person experiencing them. Some people may get stuck in one stage.

__________________________..............__________________________

 

STAGE 1. SHOCK & DENIAL  (2006)
You will probably react to learning of illness with numbed disbelief.  You may deny the reality of the diagnosis at some level, in order to avoid the pain.  Shock provides emotional protection from being overwhelmed all at once. This may last for weeks, or in my case, years.  

A lot of friends and family would ask me, "why didn't you tell us sooner?", but in all honesty, it takes some time to accept the news on your own before having the time to tell others.  I always believed telling people your diagnosis was making it a reality.

STAGE 2. PAIN & GUILT  (2007)
As the shock wears off, it is replaced with the suffering of unbelievable pain.  Although excruciating and almost unbearable, it is important that you experience the pain fully, and not hide it, avoid it or escape from it.  

I turned to alcohol.  Some turn to drugs, others turn to casual sex.

You may have guilty feelings or remorse over things you did or didn't do, or what you did to deserve it.  Life feels chaotic and unstable during this phase.  

I struggled daily with the thought of karma -- what did I do to deserve this?

STAGE 3. ANGER &BARGAINING  (2008)
Frustration gives way to anger, and you may lash out and lay unwarranted blame for diagnosis on someone else.  Please try to control this, as permanent damage to your relationships may result.  Even though MS claims it's not hereditary, I felt as if my father done the damage (MS took the life of his sister's son; my cousin).  This is a time for the release of bottled up emotion.

STAGE 4. "DEPRESSION", REFLECTION, LONELINESS (2009 - 2010)
Just when your friends may think you should be getting on with your life, a long period of sad reflection will likely overtake you.  This is a normal stage of grief, so do not be "talked out of it" by well-meaning outsiders.  "Things could always be worse," people say.  During this time, you finally realize the true magnitude of your diagnosis.  

I isolated myself on purpose -- after my diagnosis, I swore of relationships for 5 years.  The most time I'd spend with someone was up to 3 weeks, and out the door I went.  I didn't feel worthy of a healthy relationship.  I felt damaged, unwanted and not needed.  I always focused on memories of the past.  I have never felt that truly lonely in my life during those years.

STAGE 5. THE UPWARD TURN (End of 2010 - 2011)
As you start to adjust to life with a diagnosis, your life becomes a little calmer and more organized. Your physical symptoms lessen, and your "depression" begins to lift slightly.

I was sick -- I cannot change that, it is who I am.  Accept me as I am or not.

Make your diagnosis a positive attribute in your life, like I did when I started this blog two years ago.

STAGE 6. RECONSTRUCTION & WORKING THROUGH (2011 - NOW)
As you become more functional, your mind starts working again, and you will find yourself seeking realistic solutions to problems posed by life with a diagnosis.  You will start to work on practical and financial problems and reconstructing yourself and your life with health complications.

I started dating again, not looking for a serious relationship because I knew I wasn't ready, but I started dating to find company, just not casual sex/dating.  I would meet the first person I'd care about during this period, and even though it was shaky, I learned how to care again.  I would learn what it took to make a relationship healthy, since it had been almost 6 years.  I started opening up to people I cared about, sharing my thoughts and feelings with others.  And I started to love myself again. 

I also learned you could move a thousand miles away, find new friends or try to live a new life -- but you will never be happy, no matter where you are or who you are with, if you aren't happy with yourself.

STAGE 7. ACCEPTANCE & HOPE  (2012 - NOW)
During this, the last of the seven stages in this grief model, you learn to accept and deal with the reality of your situation.  Acceptance does not necessarily mean instant happiness.  Given the pain and turmoil you have experienced, you may or may not return to the carefree, untroubled YOU that existed before this tragedy.  But you will find a way forward -- you will find a NEW you.

I feel ready to share my life with others, I feel ready to let love in and begin a healthy relationship.  I feel ready to show my life to someone I care about without the fear of them learning how damaged I had become because of my diagnosis.  Finally feeling carefree and able to relax again, I haven't felt this calm in years.  I'm finally happy again, with the new person I had become.

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

_______________________________________________

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.

_______________________________________________

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.

Denial Than Acceptance

I'm starting to think the past few months, my denial about what my life is really like spiraled me into situations I normally wouldn't have put myself in, or actions I normally wouldn't have done.  I'm a little embarrassed of myself but hey... live and learn.
Talking to that guy I like earlier... I told him I stayed in tonight because I was in pain.  My legs hurt.  I also said I have to get up early for a doctors appointment.  We had a long talk about everything I've been talking about here.  My attempts at normality, my attempts at trying to look my life was perfect in every way so no one would remember that I was sick in the first place.  Dammit, it felt good.  It felt good to finally tell the truth.  I can't wait to see how this plays out.

I'll be filming my doctor's appointment, by the way.

I haven't felt this much peace in years -- a peace with myself.  I've been so unsatisfied, so unhappy, playing games, doing too much acting... and now?  I feel like I'm free.  I'm finally free.  Good God, I haven't felt this good in so, so long.

Wendy Booker Is Proud Of Me

Wendy Booker has heard about my blog and contacted me!

If you don't know who Wendy Booker is, she was diagnosed with MS in 1998.  Facing life in a wheelchair, she did something awesome instead: climbing mountains, going to the North Pole and facing adventures in the name of Multiple Sclerosis.

Thank you, Wendy!  

It's people like you who inspire ME to do what I do.

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.

 ____________________________________________

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.

Walk Or Grow Wings

Sunny readers,

You all know I've been going through a tough time right now and I really, really appreciate all the support you've given me.  This weekend has been a very dark time, and I went to a place mentally that I haven't gone since the night I was first diagnosed with MS.  I started to question myself and lose faith in the hope I have to live an amazing life, even though I'm sick.  Then last night, I went to go check my PayPal.  Listen, I hate asking for money and I don't even like borrowing it.  I was terrified that donation button would be tacky and I didn't want any of my readers to think I was taking advantage of the support they've given me, even though the donations are extremely appreciated.  Times are tough -- I don't even know if I'll have money to buy groceries next week after paying off bills from my hospital stay.  It's like, pay my rent or buy my injections and fill my prescriptions? 

Anyway, I went to check PayPal and there were donations in there.  I literally broke down crying (and I still cry just talking about this).  Sometimes you forget there are really good people out there.   Very truly, from the bottom of my heart, I thank you so very much.

Readers -- you saved my life this weekend, in more ways than one.

March 2006. Paralyzed waist down from MS

This was the little blog that could.  Back in 2010, I started this as an outlet to talk about my experiences with disease.  Now in 2012, I get visitors to this blog every minute of the day and messages from all over the world thanking me for doing whatever I'm doing.  All of you give me life.  All of you.  You all give me a reason to wake up in the morning, you all give me a reason to keep fighting and all of you beautiful creatures give me hope. 

When I was diagnosed in 2006, I had died and was re-born after my diagnosis.  

My diagnosis has given me more life than I had ever lived before 2006.

And from the bottom of my heart -- thank you for saving my life.  Thank you for giving it meaning.

That said... Here is Sunny's first reader's submission.  This beautifully made tribute video is by Karen Keefe Krueger from Elk Grove, California.  Diagnosed at the age of 27, Karen is another face of Multiple Sclerosis.  With two children, she looks that diagnosis in the face and shows no fear.  She's an inspiration to all of us here.  Karen's been campaigning hard for her WalkMS team and I wish her the best of luck!

What Is Multiple Sclerosis? For MS Awareness Month

There are currently 2.1 million people living with Multiple Sclerosis.

Every hour of every day in the United States, someone is diagnosed with MS.

The likelihood you know someone with MS...

Your co-worker, your neighbor

Your friend, your family

Yourself

Someone you love and care about is living with Multiple Sclerosis.

What is MS?

MS is an unpredictable, devastating and often disabling disease of the central nervous system.

It interrupts the flow of information within the brain, and between the brain and body.

Imagine it as a telephone line -- your brain is calling your body on the telephone, but it takes a few tries for the call to get through fast enough, and for some, the call never goes through. 

Imagine all of the times your foot, leg, hand or arms have fallen asleep.  Now try using those extremities.   That's how it feels to us with MS.


And you know that intense pins and needles feeling when your foot or arm starts to regain feeling, but you are overwhelmed with a painful pins and needles sensation?  That's the pain we feel all of the time.

Most people are diagnosed in their 20's and 30's.

But MS lasts a lifetime.

And there is no cure.

MS disrupts people's lives.  MS affects people's careers.  

MS eats away at the brain and body.  We are walking expiration dates.

MS disconnects you from the people you most love and care about.

MS impacts friendships and relationships.

MS takes things we don't want to give.

Like the ability to hang out with friends.

Or play with our kids.

And future grandchildren.

Or the ability to maintain a successful career.

Or even get dressed on our own.

MS can get worse.  Or it could get better.

Some people have relapse-remitting,

which means their MS comes and goes, but always remains the same.

Some people (like me) have secondary-progressive,

which means MS comes and goes, but progressively gets worse as time goes on.

And some people have progressive MS,

which means their MS never goes away, and symptoms continually devastate the body.

You can't always see MS, but trust me, it's there.

Did you know women get it more frequently than men?

Unfortunately, when men are diagnosed, their MS is more progressive.

Children can even be diagnosed with MS.

Someone you know is living with MS,

RIGHT NOW.

You may have MS and not even know it yet.

Even though some have symptoms, a diagnosis could take hours or years.

8: The number of available treatments for MS.

$28 Billion:  The cost of MS on the U.S. economy.

$2, 681: The average cost of Copaxone per month; the number one used injection to treat MS.

$49, 000:  How much it costs a median household living with MS every year.

10:  The number of years is takes for the average person living with MS to leave the workforce.

You,

Everyone you know,

Need to use your voices to get the word out.

IT IMPACTS US ALL.

Together we can raise awareness.

Handicapped Parking

I have a handicap plate on my car.  I drive a Nissan Murano -- a semi-small SUV that was perfect for holding a wheelchair in the back.  Being permanently disabled, I have plates on my car.  Here's the thing... if I'm healthy, if I'm feeling alright, I will not use a handicap spot.  I know first-hand how hard it is to get those spots when you truly need them.  But if I'm experiencing a flare-up, I'll utilize those spots.

Today, an old peepaw wobbled up to me and yelled, "you aren't allowed to be parking in that spot!  What's wrong with you?  You don't look disabled!"

I've heard this sooooo many times before.  My mother has even been yelled at before, because they'll see her get out of the car, perfectly healthy... but, not realize there is a young lady in the vehicle with a leg brace on and using a cane (or a wheelchair).  I have actually seen (usually peepaws and meemaws) waiting in their car, watching who comes in and out of those handicap spots.

I blew my lid.

"Listen peepaw, it's none of your goddamn business why I need to use this spot.  Just because I'm not 100 years old or I don't have any disabilities you can see with your 20/20 vision eyes doesn't mean I'm not disabled!"

Sorry, folks.  The agonizing pain I'm feeling in my body is not worn on the outside, but trust me.. sometimes that pain is so bad, I don't want to wake up in the morning.  With each spasm, it feels like a hundred pins and needles going through your body.  Just because you cannot see it, doesn't mean it's not there.

Updates + Welcome New Readers

Ohhh!  The abundance of posts... I've been staying in a lot because of my speech problems.  I mean, everyone pretty much knows what I sound like because I posted a YouTube video of it, but it's still embarrassing.  There are a few things I want to get to everyone about...

Updates on my relapse:

• Knees are in pain.  Sometimes when I stand up (or get out of bed), the pain is so excruciating, I feel like my knee-caps are breaking in half.  Worst pain ever (worse than kidney stones).  I have arthritis in my right knee but now both knees bother me.  Doctors think I got arthritis from being in a wheelchair so long, and going from very active to inactive, back to very active.  I've been keeping those warm knee-wraps on at night, which help tremendously.  
•  Speech problems are improving.  Not so much stuttering anymore but just speaking veeeery sloooowly... I sound like I had a few too many.  Ironically, when I was drinking, I sounded normal.  Ah, that's life for ya.
• Vision is coming back.  It's my right eye.  I'm noticing a lot of my symptoms are on my right side, which instantly reminds me of what my doctor said once:  the lesion should be on your left side.  Brain works in mysterious ways.  I know the lesion is in my brain because I'm having mostly cognitive flare-ups.  
• Spasms are under control.  I have been taking Ativan three times a day, which helps a lot.  I notice my foot still turns, but I'll wear my AFO if it's a problem.  Don't want a sprained ankle now, do we? 

Went to the doctor's Monday morning with Hall.  Test results came back -- NO TREATMENTS NEEDED!  YAYAYAYAYAYA!

There was a time when my friends would get freaked out about my symptoms with Multiple Sclerosis.  Maybe it depends on the people, I don't know.  Like, someone like Chunks probably would have laughed if he saw the last video I posted.  However, a few of my friends, and people I'm friendly "with" but not "close", shared my video across Facebook and Twitter.  The response I am getting from the last video I put up has been mind-blowing.  This morning while I was checking my logger for my website, I noticed I had probably 5x's more viewers than I normally did.  It's now 2:00 p.m. and I have a visitor almost every minute (I am hoping my blog doesn't crash?!).  The MS Facebook page put up my link to my Slurred Speech + Afo video on their Facebook page.  I want to cry, THAT IS SO AWESOME!

Speaking of stories, I asked on Facebook today (which some is public, most of it is private, so I ask you to add me!) asking my Sunny readers if any of you would like to contribute to my blog.  I'd give you permission to access my blog and you can write, then submit your own entries, vlogs, pictures, whatever you'd like!  Even if you want to write a poem, or want to write some song lyrics that move you... anything!  I think it would be really cool to have different perspectives from us sick folk from all over the world.

And to you, Sunny readers --  Are there any subject topics any of you would like me to talk about?  I know a few of you wanted me to go more into the sex thing, but I'm curious what others you'd like to see??!

FOR NEW READERS

Please use the "tags" option at the side of the blog to find entries.  Want to know my hospital stories?  Click on "hospital".  Want to see my experiences in a wheelchair?  Click on "wheelchair".   You get the picture.  

Here are some blog entries to get you started:

My first entry -- How I was diagnosed 

 Pictures of my month long stay in the hospital, back in November.

 

Dating + Multiple Sclerosis

My first big relapse in 2 years + going into heart failure 

Welcome : )

It's Got Two Wheels, But It's Not A Bike

I've never really talked in-dept about my experience being in a wheelchair.

When I first started using that hell-on-wheels, I thought I was going to get pity (and you know I hate pity).  It was actually quite the opposite:  assholes came shining through, let me tell you.

One time, I was out shopping with my mom.  Shopping was always a hard thing to do.  Think of Target and think of how little the spaces are between the racks -- now imagine fitting a wheelchair between them.  Women would look at me like, "you are in my way".  I remember one woman actually pushed me out of her way -- pushed my chair! 

And I'll never forget one time when I was in CVS.  I was wheelin' my way through, mindin' my own business, when a man looked at... smiled, and said, "you are still very beautiful."  I don't think he knew how good that made me feel.  You don't get many compliments being in a wheelchair.

However, the worst time was when someone took me to the aquarium in Camden, NJ.  At the aquarium, there are spots right in front of the displays just for those who are handicapped.  I would be wheeled right up to the handicapped spot and be surrounded by a million children.  I like kids, but being surrounded by 20 of them gives me hives.  The kids would start touching my wheelchair, which was okay... I understood they were curious little creatures.  But then, the kids would start climbing on my wheelchair to get a better look at the display.  They would put one foot in my wheel and hang onto the back, while their parents would look on in horror but not say anything about it and probably hoping I didn't say anything about it either. 

I get a lot of questions about how I got out of my wheelchair.  In all honesty, I think it comes down to one thing -- determination.  You start to lose the ability to live life while using that thing, but I mustered everything inside me to want to walk again.

You Are Not Your Diagnosis

She'll be the same, just improved & with a bigger heart

I was talking to someone earlier about telling people about a diagnosis of Multiple Sclerosis. You see, MS is tricky – there is no cure, the treatment is not very reliable and not many people know what it is. But more importantly, when you are diagnosed, you need time to accept that diagnosis before you can tell other people.

And this is a great topic, because my anniversary is on Tuesday.

When I was first diagnosed, I lost my shit. I really had no idea what MS was and there were many times I sat in the rehab “rec room” to use their public computer and Google what I should expect. It took me awhile to accept that diagnosis, it took awhile to get over that initial shock and I was terrified about peoples’ reactions. You can really tell the bond between friendships when you are sick. I’m warning you now: some of the people you think may be there to support you, may not be there. When I was in the hospital back in November, the guy I lost my virginity to (and that old group of friends) was there and supported me every single day. Crazy, right? At the same time, you might become closer with those you didn’t think you would, like the example I just gave. When I really needed someone in the hospital, when I needed someone to hold my hand and just be there – it was one of my ex-boyfriends. We’ll always love each other. When I called him and told him what had happened, he drove right over. He pulled up a chair, made me laugh and watched television with me for hours.

When you are going to tell your friends about your diagnosis, start with those who have been through the worst with you. You will need someone to be there if you fall. Give the news some time; let everyone sink the information in. It can be a really beautiful thing when people begin to support you in ways they hadn’t before. And when you tell… let’s say a significant other or someone you are dating, I don’t know. I’m not an expert, clearly, on that. I’ve always found dropping, “hey, I have MS” a lot easier than saying “hey, I have cancer”. Think of it this way: if your partner leaves you because of your diagnosis, you did not need that person in your life. I don’t know about any of you, but I like my partners to feel like best friends. I want to feel able enough to go to them with anything and not feel like I’m being judged. If you have to question this, seriously re-evaluate. There might come a time when you are healthy for years and end up in a wheelchair down the road.

However, significant others are tricky too. You are going to hear questions like, “can you have children?” “is it contagious?”, or them re-word something nice with a bow but really mean “will I have to take care of you one day?” And sometimes you might get lucky. I recently dated a really great guy, who when I told him I had MS, he researched all about it later that night. When the next time I saw him, he knew so much about my condition, he felt really comfortable to talk to me about it. He read my blog; all of it. Some people are really compassionate and some people aren’t.

Bottom line is, it’s extremely difficult to tell the people you know you’re sick. It’s almost like making the disease real and come to life by everyone knowing. And sometimes, people may leave your life because of it. It’s an awful feeling. It’s one thing for someone to leave your life because you are a total asshole or doing something you can change about yourself, but it is another for someone to leave you because of something you can’t control.

There are always going to be issues down the line about telling someone your diagnosis. After my ex-boyfriend left me, it took a long time to trust someone again, but I eventually did. But it has made me a seriously greater person because of it. You are the ultimate kick ass fighter. I have a few friends that can’t piece themselves together after a break-up, drink and cry themselves into oblivion, and I have to wonder what they’d do if they had cancer. But you – you beautiful creature – you are a fighter. Everything you’ll do from now on will be more awesome. You’ll appreciate life more. You’ll appreciate the people in your life more. And you’ll know you’ll be able to conquer anything.

** I have been getting so many messages about me stopping my blog. Then I got one message, from a girl in New York, who told me she just had been diagnosed with cancer last month. She had been reading my blog to feel “as if she had a friend”. It broke my heart. Someone in my life once made a comment about my blog, about how he could never have time to manage one, let alone read it. It made me feel like shit, especially since my blog is about being sick. But I realize, I help people. I try to, at least. I have made really great friends because of my blog and connected them to other people in their situations. I am a strong, beautiful, intelligent woman. I work three jobs. I go to school part-time. Nothing in my life is more rewarding than speaking to all of you and knowing I might have helped at least one person because of my story.  And even though a lot of you have become totally immersed with my situation like it's Big and Carrie from Sex And the City (a few of you compared it to that - hilarious - I wish I had Carrie's shoe collection and Big is actually charming dreamboat) but I won't be talking about him.  Actually, I won't be talking about anyone I am romantically linked to, go on a date with or am interested in.  I mean, if I get married on Valentine's Day, I don't want my future husband to be like, "who the hell is Chunky Monkey?!"  Lately, I've lost "my fire" as a friend said.  Bottom line is, I don't want a relationship right now (I have work on myself first before I put "serious" energy into another person) but I want to enjoy company, I want to be romanced, I want to have fun on dates, I want to be cuddled with, I want to enjoy my new collection of lingerie, and I want to be smooched without all the hub-blub of something intense.  I want to be involved and have a little sweetness in my life without having to be COMPLETELY emotionally invested in something I know I can't put my 100% in at the moment.

The past year, I've been becoming closer with a lot of the people in my life and it's been a test for me.  I've always had a wall-up when it came to anyone close to me.  I've been so self-conscious about being so vulnerable, I forgot to enjoy life like I used to.  And because I've been so self-conscious, I've expected way too much from others to compensate for what I felt I lacked.  Like I told someone last night, I'm a Ferrari but I am acting like a Pinto.  I realize the old me wasn't the greatest person in the world, but that doesn't mean I have to completely change myself, which I thought I did.  I'm working on bringing the old Natalie back, even more awesome because this time around, I actually love myself, I love the people in my life and I love life.  Life is meant to be enjoyed and lived, not for everything to be so serious all of the time.  Thanks.