Uncomfortable Pain

I haven’t blogged for awhile. Minus the post from a few days ago.

My MS is keeping me homebound; 91% of the time. Since Monday my left leg has turned into what feels like a block of cement. I’m pretty much in a slight state of depression over this. I walk and feel nothing but pain. I want to cry, but I can’t. I’m dragging around my leg and I know people are looking at me, so why go outdoors? Why face the stares?

I have to. Because I do need to make a living while I still can.

Sigh.

Orlando

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I feel as though I need to address what happened Sunday morning.

This act of terror hit close to home. No, I’m not gay myself. But a close friend and family members are. In fact, one lives close to Orlando.

Let’s look at it this way.

We’re all supposed to be free to love whomever we wish to love in this country. We’re supposed to have that right. No one has to agree with who we love.

Here’s the problem:

A man saw something he didn’t like between two other men. If it upset him, well, in my opinion, it was none of his business what this couple was doing.

That was the solution.

Mind your business.

That’s also another problem in this country. People don’t know how to stay out of anyone’s business.

This terrorist took it upon himself to take the lives of 50 people and injure 53 more. All because he didn’t agree with their lifestyle? How did the FBI let him skim under the radar once he was red flagged?

The more the week progresses, the more we try to understand how this happened.

As a Catholic person, I try my best not to judge anyone. It’s not my place.

In America- we’re allowed to voice whatever opinion we have. Thing is: Someone’s opinion usually initiates more hate.

I hate to break it to you Christians who may be reading this: The Bible may state it’s a sin for a man to lay with another man. You do not know if Jesus/God said this. YOU DON’T. Just because a book tells you that it is the “word of God”, doesn’t mean it is. For all you know, a crackpot could’ve written the Bible and made his own beliefs regarded as God/Jesus’ beliefs.

Again. I’m not an atheist. I’m Catholic. And I have a hard time believing that “God’s word” judges other people. When… the Commandments speak of adultery, murder…yet people do this. Every damn day.

These victims in Orlando, God rest their souls, were out enjoying themselves with their friends, significant others, and families. Just because people don’t believe in gay marriage or gay rights; the people they were with, did.

This is a time we as a Nation should be looking at ways to prevent this behavior; not commend it. No one “deserved” what happened to them.

Hate is a major problem in this country.

Let’s stop the hate and come together.

At the end of the day…

Love wins over hate.

 

 

 

Sympathy… I Don’t Need It.

Whenever someone finds out I have MS, they act like I’m dying. Like it’s the worst news I’ve ever been given. Of course, I automatically want to punch said person(s) in the throat. Why?

Because I am left the rest of the day feeling self-conscious about myself. Whenever I get this sympathy,  I become uncomfortable with my diagnosis.

Note to you healthy people: Don’t do this to MS folks. Don’t.

We already have our issues with our bodies every day and we don’t need your sympathy to where we are even more aware of our issues. I don’t need to feel like there’s something “tragically” wrong with me. There isn’t. Outside of this disease, I’m quite okay. Fine, actually. I’m not depressed. I’m not upset anymore that I have RRMS, I’m quite content with it. It’s the hand I got dealt.

So please, when you find out my diagnosis, don’t give me that look and give me your “worst news” voice. Smile and wish me luck or ask me about my journey. Or please, change the topic. Or keep walking.

My Adventure

My sister and friend (plus some kids) decided we all needed to have a hiking adventure yesterday. Me? Well, I was kind of leery about it. My experience with the Copaxone hasn’t been that great. I ended up with an Upper Respiratory Infection and tonsillitis. I was talked into the hiking adventure, however. Giving the benefit of doubt, I joined.

It couldn’t be that bad, right?

Right????

No, really, it wasn’t that bad. The hiking trail was beautiful. I do mean BEAUTIFUL.

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Then there was this waterfall…20160518_202445

….which my friend’s daughter later fell down and went with later. (Literally. She fell down the waterfall) and my sister cleverly yells “Don’t go chasing waterfalls..”

and then…

I’m proud of this one. I pushed myself to climb a cliff and finish the trail. Which I did.

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People may argue limits and boundaries with this disease… and I will argue one more time back. This disease is NOT and WILL NOT define who I’m going to be. I will continue to be who I’ve always been. A stubborn & determined person. I will always be that person. I may have MS… it does not have me.

Living a “Normal” Life

Before I came down with symptoms in 2006-

I was 22.

I loved playing with my toddler nephews, playing soccer, going on crazy activities with my family. Things were pretty “normal”. Nothing seemed out of the ordinary.

Now at 31–

With my diagnosis, it’s clear that everything has changed. No matter how hard I try not to let RRMS take control of me- I know I may not win. No matter if I believe I am Batman (and I do believe this… 24/7), my reality is that I don’t have a normal life.

My nephews, who are now pre-teens, are well aware that if its 92 outside; I can’t be outside. They know if I’m asleep on the couch at 2:30 in the afternoon, it’s fine. They believe it’s normal. They don’t understand the depression and pain, but they know this is who I am.

What is normal for us may not suit others. I’ve lost friends and I have no idea why. It makes me wonder if they were even my friends to begin with. I sometimes believe they don’t know how to talk to  me anymore- but that isn’t a reason to abandon someone you called a friend.

Time to adapt to the “new” normal.

Ten Years

Ten years…

Well, not quite ten years has come and gone since my life has turned upside down. In the summer of 2006, everything changed

In the beginning, when the MS symptoms start; you want to think it’s all in your head- and when doctors are telling you that you’re imagining the tingling in your hands and feet; who are you to correct them?

Two weeks after I experienced my first symptoms: I was hospitalized because I had lost my ability to walk. The entire hospital had no clue what was wrong with me; before they ran me through the MRI machine- I was told I had cancer. At the time, I was twenty-two years old. Twenty-two. So, I guess when you have no idea what is wrong with a patient; you automatically assume the worst instead of sending them to another hospital.

The first night I was in the hospital, I went through respiratory distress and ended up in ICU and eventually ended on a heart floor. I was told I had a disease known as Guillain-Barré syndrome (even though the doctors had been told MS had ran in my family, they ignored me). I was then kept and given an immune system treatment that was basically like chemo.

I had to go through PT and OT to learn everything over again… even the women who worked with me during this time swore I had multiple sclerosis.

In 2013: I started having headaches that turned into migraines. Bad migraines. My doctor didn’t think much about it. Then around Thanksgiving… I got sick. When I say sick I couldn’t get rid of a virus I acquired. I was really sick. Till Valentine’s Day. 2006 pops back into my head and I told my doctor “I wanna be tested for Multiple Sclerosis. I think I’ve had it all along.” He tells me I was too young to have it. I said I didn’t care. I wanted to be checked.

Well, MRIs came back empty. Then a neurologist did a spinal one. And BAM. Lesions 1 and 2 on the spinal cord. I get sent out of town to an inept doctor who did another brain MRI and he said all I had was a stuffy nose. Come to find out…. I had a lesion exactly where my head had been hurting

2015: I found a new neuro and was diagnosed with Relapse-Remitting MS.

2016: It’s been a long road.. but there’s still a long struggle ahead.

 

I can’t believe it’s been ten years.