Thursday, November 28, 2013

A Stress-Free Thanksgiving

With Thanksgiving happening tomorrow and the stress building up with questions like ‘Will I run out of food? Will the turkey finish thawing? What if no one shows up?’ Well let me advise you, there are ways to lessen the stress this turkey day.

Stress isn't a friend to MS fighters, so take a deep breath, understand that if you make it through the entire Thursday without a nap, you are a superhero!

Tip 1: Watch the Macy’s Thanksgiving Day Parade

Take a minute to watch the Macy’s Thanksgiving Day Parade in your PJ’s. Don’t turn on the TV while cooking or getting ready. Sit down with your morning brew and snuggle up to a festive time.
If you have kids, this is a fantastic tradition to begin with them, they won’t even know it’s actually for you to rest!

Tip 2: Divide the Duties

Don’t fret if your in-laws are bugging you to bring an item to Thanksgiving dinner…hello! Take them up on the offer! Divide & conquer should be your motto. If you take on the entire feast, you are probably going to make everyone you live with miserable while preparing. You’re laughing aren’t you, because you know that will happen!

Also, for kid-friendly households, have your spouse entertain the kiddos so you can have the time needed to get the scrumptious feast under way. You really don’t want them under your feet all day while checking on the turkey.

Tip 3: Breathe

Last but not least, breathe. You will be tired, you will want to scream, so don’t overload yourself. Enjoy the time with family and friends and know that everything will fall into place.
Consider your Thanksgiving dinner a success if you don’t burn down the kitchen, then you will exceed your expectations when the whole night goes wonderfully well!

I hope this helps but I have to admit, I don’t plan to really ‘follow’ any of these rules(except watching the parade). Hypocrite? I think not…I've taken the ultimate stress-reliever by making lunch reservations! Perhaps that should be Tip #4? 

Monday, November 25, 2013

5 Misconceptions about Multiple Sclerosis

From the first time I heard of Multiple Sclerosis 10 years ago, I believe that the awareness has grown tremendously, but with that comes some misconceptions or myths about the disease that want to focus on.

Misconception 1: Multiple Sclerosis is a Death Sentence

While we are all going to die someday, MS is not something like Cancer where death is an option. MS will make your life harder, make you stronger, but will not automatically be the cause of death. It's not like West Nile Virus or Mad Cow Disease, it's more like being hit by a freight train every morning but blessed to survive.

Misconception 2: Women are Unable to Have Children

I'm a young, married woman with no children. When I was diagnosed, this was by far one of my biggest fears. Questions went through my mind, Will my husband and I have to adopt? Will we be the coolest aunt & uncle to our nieces and nephews and just live with dogs forever? So many questions surrounded this issue, yet there isn't anything to worry about. MS is interesting when you are pregnant...I'll explain:

Basically, your immune system kicks into high gear when you conceive to be sure to help out the baby, therefore it isn't focused on eating away the Mylein on your spine. (go here to read more about Myelin).

I will actually be able to get off of my injections for the time leading up to conceiving and all throughout the pregnancy (that's definitely a blessing!). There is one drawback though, typically MS patients relapse right after delivery, which means a round of IV steroids is almost always given. I think this is going to be amazing, I mean I get drugs that keep you up and give you tons of energy during the first week home with a new baby?! Sign me up!

Now, I know how the current trends are with breast feeding...but for my situation, it's not an option. What a blessing it was to hear from my doctor that I WOULD be able to have children. I think I can handle the not breastfeeding part.

Misconception 3: You Will Never Walk Again

According to the National MS Society, "Two-thirds of people who have MS remain able to walk, though many will need an aid, such as a cane or crutches" - The odds are definitely in my favor (I couldn't resist a Hunger Games mention), especially looking at my mother who has had this disease for 10 years, she still walks, works, and does way too much than she actually should! 'Hopefully' I follow in those footsteps.

Even in the event I do become confined to a wheelchair, you should know that it will be pretty amazing, and orange! I definitely will stick out in the crowd!

Misconception 4: You are Unable to Hold a Steady Job

This is something that I am very passionate about. I absolutely love my job, I don't want anything to come between my ability to enjoy my profession and go to work every day. There are many professions that I don't think I would be able to do, even at this point of my diagnosis. Anything that is out in the heat would be a killer for any MS patient, I'm thankful to work indoors sitting comfortably at my desk.

Misconception 5: All you will do is sleep

This one is the most important. You will do more than sleep, you will eat, cook, clean, work etc. But trust me, all you WANT to do is sleep! I've never had a problem keeping my eyes open during college classes or at work, but now I seriously have to put in an effort to not doze off.

Putting in that effort just makes you want to sleep's bad.

Does anyone else think about sleeping and think that it's similar to a long awaited vacation? Yet you only woke up 2 hours ago...every day right?

I hope this helps answer some questions you might have about MS or 'myths' you may have heard.

Friday, November 22, 2013

Who Else Celebrates Birthday Week?

This week I turned 25, that's right folks, halfway to 50! 

Why do I feel 85? Aren't I supposed to be staying up all hours of the night, enjoying the weekend's with friends, and repeat each week? 

Perhaps I am lame, because a 9:30 bedtime and naps on the weekend are both included in my idea of fun. 

My sweet husband took me to the mall to pick out a purse for my birthday, I have a problem and it is called purse shopping. 

I don't look at price tags until I'm already poor husband. 

So we did that for a few hours then headed off to eat a fabulous dinner at The Cheesecake Factory. I was Googling like crazy trying to find their gluten free menu, but no luck. I did however find a ton of awesome reviews on their gluten free menu. 

We decided to give it a try, if worse came to worse we could trot next door to PF Chang's because their menu is fabulous! 

The food and service was great and did I mention gluten free chocolate cheesecake?!

Seriously get it to-go and eat it in the bed while watching Big Bang Theory. (Sidenote: I may or may not have done that) 

So it was a great night with my husband, but there's something that I love about birthday week...I don't cook, or grocery shop at all! Meaning, I don't care how the food gets in my belly as long as I don't peruse the grocery store looking for it or slave over the stove every night to prepare it. (My husband doesn't cook, so remind me to run a few extra miles next week) 

Birthday week really needs to implemented across all households, I highly recommend my method for you! 

Now, to just get my employer on board, I could make next year's birthday week an amazing one! 

Monday, November 18, 2013

MS Explained in Layman's Terms

So what the heck is MS? We hear about it often in the news and with celebrities like Jack Osbourne, Montel Williams, Nascar driver Trevor Bayne, and even country music star Clay Walker. But what is it, and is it deadly? 

I'm going to give you the 'layman's term' for it, not a bunch of crazy, confusing crap about Myelin. (I've always hated science, I barely passed my Geology class in college, why do rocks have Cleavage?) 

It's an auto-immune disease which means your body is attacking itself. Your immune system is literally eating away the stuff (myelin) around your spinal chord. This create lesions on the spin, neck, and in the brain. Once you get hot, stressed, or over-exert yourself, BAM you get to really feel MS. 

It's messes with your nerves in the weirdest ways, you have crazy things that twitch, usually during the most important times, job interviews, client meetings, sleeping. You literally just watch your eyelid, arm, toe, finger, whatever it might be go to town. 

MS is not a cookie cutter disease, it treats each person completely different. The most common symptom is optic neuritis - which is when your optic nerve is affected and makes your vision blurry or even worse, you could lose vision. 

Most things go back to normal after a period of time...this could last a week or several months. 

So here's a list of the most common symptoms MS patients have.
  • Numbness & Tingling 
  • Vision Problems 
  • Bladder/Bowel Inconsistencies 
  • Depression/Anxiety 
  • Muscle Weakness 
  • Balance Issues - We are stumblers, I run into things constantly and wobble back and forth with no apparent reason. AND I cannot close my eyes during a standing prayer, I will begin to fall over - Can I get an Amen?
  • Fatigue 
  • Cognitive Issues

There are many different things associated with it and if something starts happening to me, I always blame it on my MS. I mean who the heck knows, I could grow a duck's beak tomorrow and I would certainly blame it on my MS. 

Wednesday, November 13, 2013

My Brain Doesn't Work, Ever!

Let's face it, the things that we think in our heads come out entirely different when we open our mouths. I was always a well spoken person, could even give impromptu speeches (in Spanish) at the drop of a hat.

Now, I have a hard time coming up with simple words. It's an everyday battle that has truly decreased my self esteem. 

While at work, I tend to not speak up because the words usually don't come out right. At my previous job I worked with a fantastic group of girls who knew what I was going through and would pick up and continue the conversation during an important meeting. 

At my new job, no one knows, which means I sound like an idiot at times...I can't even blame it on anything without them knowing! 

I noticed this problem months before being diagnosed as I would always ask my husband for something extremely bazaar. We would always just laugh it off. Things like "Can you put the milk in the oven" or repeating the same question numerous times during the same 5 minute period, yes I'm like an old lady. He always answers with the same tone and same patience, I just love that man :)

It usually doesn't bother me too much, as I have learned to work around it during my job and my husband and I can laugh it off. However, we have made some new friends over the past few months and were getting our usual yogurt dessert this past weekend. 

We were all enjoying the visit and laughing extremely too loud for such a small shop, when I smelled a "burning smell" - ya know the kind of smell that you smell when someone blows out a candle. 

In my mind I was going to say "I smell something burning" however, from my mind to my mouth, it just didn't happen to come out that way. 

Instead I blurted out "I smell thunder" in a very serious tone, one you would use when you are talking about smelling smoke....

Laughter proceeded for the entire table. I nearly lost it, I almost lost it because of the reality. How can this disease take over every part of your life, why can't it only be stumbling and numbness, or fatigue and headaches. Instead we are mumbling, blubbering, wobbling stumblers trying to make it through life.

Can anyone relate, I hope I'm not the only one?

Monday, November 11, 2013

Needles, Sweet Needles

What do needles have to do with MS? For me, it means everything, a way of life, and extremely ugly marks all over your skin.

The current medication that I take is Copaxone, it's supposedly the safest one out there, but it means that you feel like a drug addict every night while taking your injections.

The only major side effect is swelling and itching of the injection site, which pretty much happens every time. The extreme major side effect but rarely occurs is when you feel like you have a heart attack, pass out, and chest pains for thirty minutes after the injection. Luckily, I have never had the latter before.

My mother (you can read about how we both have this wobbly disease here) began her MS treatment on Copaxone, switched to Gilenya for a short period of time and had a bad experience, then switched back. Basically, all we know in our family is Copaxone.

For those who don't know, it's a daily injection that I give to myself around 9:30pm every night. I have about 15 minutes of slight pain and then life goes back to normal. I rotate each day so I don't begin to have indentions in my skin. Here's a nice photo of the injection sites.

Tracking Relapsing-Remitting Multiple Sclerosis Injections with COPAXONE iTracker™

I've had several issues with injecting in my legs with knots that would stay for weeks. I began giving the shots by hand, rather than with my Auto-inject device, and I have noticed a much better reaction.

I enjoy this drug because it is one of the safest, but the nightly injections do get old. However, I don't mind and I hope that I continue to feel this way. I know many MS patients get very tired of using shots and switch to different medications in order to get away from the shots.

With that being said, it would be so much easier to take a pill but I want the safest drug on the market, even though it's a needle.

Needles don't have to be bad, I look at it as a way of life, something that I have to do in order to live a much fuller life.

Thursday, November 7, 2013

The 5 Things To Help Me Stay Positive

Staying positive during this whirlwind is sometimes difficult. It's easy to get caught up in what hurts, the reality that you will never get better, and the fact that you are always so darn sleepy. Can I get an Amen?

These are things that I try to focus on when I start to feel a little down, it typically seems to help.

1. My Family

I am blessed with a wonderful husband who is the most patient and supportive person I have ever met. When the dreadful fate was revealed to us earlier this year, I was so thankful to have him by my side.

Blessings come in big packages and I have the best support system in the form of parents, siblings, and in-laws. Without them I wouldn't be able to stay positive and realize that this disease doesn't define me, it makes me stronger.

2. My Dogs

I don't have children but I have two dogs, a laid-back Snorkie named Trixie and an ADHD Husky named Mia. These little ones are always happy to see me and they really help to keep a smile on your face. You can be yelling at them for barfing on the floor one minute and they will be wagging their tail the next...always bring happiness.

3.My Job

Working allows me to realize that I am not disabled, it lets me know that I can accomplish things just like a regular person. It keeps my mind focused and busy. It really is something that I enjoy doing which also helps me to stay positive.

4. Exercising

Now don't freak out, this is something I hated doing my entire life. I was in the people aren't athletic. However, I knew that this was something I needed to do in order to keep my strength and agility. I began walking short distances. The moment my feet would tingle, I would head inside. I kept building up and finally run every other afternoon for 2 miles without any body part going numb. Exercising releases endorphin and that actually makes you happy.

5. Sleeping

This is by far the thing I look forward to every weekend. I typically nap on both Saturday and Sunday and don't feel bad about it one bit. Sleeping always make me happy. End.Of.Story.

I'm not tooting my own horn, trust me, sometimes I'm just cranky and can't do a thing about it. However, I always tell myself that it could always be worse.

Wednesday, November 6, 2013

Jack Osbourne, An Inspiration for all MS Fighters!

My idea of a great evening is piling up on my couch for two hours cheering on Jack Osbourne as he dances his way to the top!

I've always loved Dancing with the Stars and have faithfully watched for many seasons but there's something different this Fall, I can relate 100% to Jack.

He said during the show that one of his biggest fears was that he just had a daughter and being diagnosed with MS, he didn't want to end up in a wheelchair while being a father. I can honestly say that young MS fighters all feel that way.

I was in high school when my mother was diagnosed, it was different, she was older, I could help her whenever it was hard for her.

I'm 24, with no kids...yet.

I have to keep my body healthy and continue to fight in order to 'hopefully' have the opportunity of raising children while being able to walk and play with my kids.

So what do I do, how do I keep my mobility and agility? I believe in if you "Don't use it, you will lose it," therefore I began walking...very short distances at first due to my feet and hands beginning to tingle. I was very discouraged, and felt like an 80 year old lady walking to the mailbox.

I changed my diet, I completely cut out gluten, didn't 'cheat' and started to see a difference. I was able to work up to walking two miles. So then I began running, I-AM-NOT-ATHLETIC, not even joking. But I began running and built up to running the whole two miles!

Now, I'm not going to be running a marathon, half marathon, or even a 5k, I don't even weigh myself. I exercise and eat the way I do in order to live a fuller life today and in the future.

I admire Jack Osbourne, how scary it must seem to have the possibility of relapsing while doing Dancing with the Stars.

Exhaustion and stress are definitely a player in his competition and that will lead to a relapse. If vision or mobility is lost, then the competition is over for him.

There's not a Monday night that I don't shed a tear, I appreciate what he is doing not only for himself but for the entire MS community. It is so inspiring and gives hope.

So with this, thank you Jack, for continuously devoting your week to dancing this season, you are doing more than dancing in the hearts of so many of us!

Monday, November 4, 2013

MS Walk - The Woodlands

Over the years my family has participated in the MS-150 to raise funds to find a cure for MS. However, now that both my mother and I are MS fighters, we decided to take to the 5K walk held in The Woodlands, TX this year.

We had a team of 15 friends and family participate and raised over $1,000! It was an amazing experience and I was so grateful to have the support of those who walked and donated.

The local Houston MS Society is amazing, they put together a fabulous event and had great sponsors for the day. We got free food, T-Shirts, and Sweet Tea (provided by McAlisters Deli).

The best experience of the day was being able to come together with all of those who are affected by MS and have a photo. We huddled together (without falling over) and snapped a couple of photos. We were able to meet and connect with others in the community who struggle with the same pain.

MS brings MSers together, ain't that right? My mother and I made instant friends and everyone was so interested in our story because we were a mother-daughter fighting duo! (FYI, there's not much of a story except when you put us together, we are usually a complete mess)

I would highly recommend all of you who have never participated in an MS event to sign up and lead a team. These events put a positive spin on such a yucky, negative experience we all live with. They inspire you to raise awareness and to build hope within your community.

One of my biggest fears with this disease is becoming negative or depressed and I personally believe that events like these help us to center ourselves on what's important - building a community of fun loving, supporting individuals who inspire us to be the best we can be.

What events or activities have you participated in that help you stay on the right track, stay happy, and inspire others?

Friday, November 1, 2013

My MS Story, My MS Blessing

The most 'life' I had done at age 24 included graduating from college and getting married. My husband and I were cruising along with absolutely no worries in the world. 

When I woke up to find numbness and deadness from my waist down, I knew immediately something was wrong. 

Multiple Sclerosis - I knew it, I felt it, something wasn't right. After multiple tests and appointments, I was given the firm diagnosis of the truth - I was not as scared as most people are. Why? Because I had watched the strongest member of my family for the past 10 years overcome each day with an undeniable strength, my mother.

Solumedrol is my friend, most people seem to hate it, I feel like a drug addict begging my neurologist for it. Seriously, how many other times can you get nearly 10 hours of sleep over 5 days and be EXTREMELY productive?! 

See, there are some benefits to those pesky steroids! 

After being diagnosed in May, I began Copaxone as my form of treatment (more on this later), and less then two months later, I had another, more serious relapse. 

When your entire body is tingling from the neck down - it's unbearable. However, I thanked God each day that it hadn't impaired my ability to walk or see. 

Each time a relapse happens, I can't help but be thankful that it isn't worse. Each time I want to cry alone in the shower, I am reminded that this can be a blessing, it can be something to use as a testimony in my life. 

I have only been living with MS for less than a year but I want to make an impact on others who have the disease and those living with family with MS. 

It's difficult, it makes life hard, it's invisible, but we are in pain. 

We cherish the friends and family who understand, those who want to provide assistance or lend an ear, I cherish them. 

What is it that you do to use your MS as a blessing?